Mosaic of Minds

Why Social Success is not a "Skill"

2011-12-17T00:14:00.000-06:00

This post was inspired by the following quote:

I don't think social skills can be judged as something that any individual person can and can't do because the people you're succeeding or failing to socialize with aren't objects. It's always two-way. That's why I think social skills can't be objectively judged like other skills (being able to read, being able to see). -Amanda Forest Vivian*

People who are able to win friends, influence people and achieve their social goals are said to be "socially skilled." Charismatic people are said to have large amounts of social skill, while some say autistic people lack it, either partially or entirely. We try to train them to improve this skill through social skills groups and other therapies. I believe these efforts show a fundamental lack of understanding of what it means to get along with other people.

These efforts implicitly assume that social functioning is a skill--something that is intrinsic to a person and can be measured in isolation from its environment, like intelligence (or better yet, working memory). Remembering large amounts of information, reading quickly, creating vivid mental images, or sustaining attention for a long time are all abilities. Because abilities are qualities inherent in a person, they can be measured and compared to those of other people.

Socializing with other people is not like this. By definition, one never interacts in isolation. All parties involved contribute to the interaction. Furthermore, each person's contributions cannot be neatly separated and measured because conversations are not a linear cause and effect chain brought about by one or another person's actions, but a complex feedback loop that evolves moment-to-moment as each person adapts to what the other did the instant before. It's not that multiple "skills" come into play here--although this is true. Rather, one cannot isolate the contribution of a particular individual to an interaction under most circumstances.

For example, suppose Sarah goes to a party and meets two strangers, Ben and Dave, and feels equally well-disposed towards them at first. Despite behaving similarly with both, down to using the same opening lines with each of them, she develops mutual liking with Ben and mutual distrust with Dave. Why did these interactions turn out so differently? The outcome was influenced by each person's personality, history, values, physical appearance, goals for the interactions, and momentary mood, all of which found tangible expression in words, expressions, and body language. Ben and Dave may not have been aware of all the information they were communicating through their words, expressions and body language, nor what cues they were using to infer Sarah's qualities. One might say, "Sarah's interactions with Ben and Dave turned out differently because Ben was clearly a nice person, while Dave was clearly a scumbag," or in other words, the difference was like this:

s + b = outcome1

s + d = outcome2

b =/=d

therefore outcome1 =/= outcome2

(Where s stands for Sarah, b stands for Ben, d = Dave, outcome1 stands for the success of Sarah's & Ben's interaction, and outcome2 stands for the success of Sarah & Dave's interaction).

But actually, without knowing it herself, Sarah reacted slightly differently to Ben and Dave's behavior, thus changing her contribution as well. Furthermore, the idea of an additive equation drastically oversimplifies the situation because at every conversational turn, Ben and Dave might part ways, giving Sarah an opportunity to react differently in her turn--giving Ben and Dave further opportunities to differ, and so on over potentially dozens of conversational turns. Given that conversational turns can occur every few seconds, in a long interaction (e.g., several hours long), the forking paths grow exponentially to the point that they might as well be infinite.

So suppose you wanted to compare Ben and Dave's social ability and argue that Sarah liked Ben and not Dave because Ben was more socially skilled than Dave. One could not do so easily because one would not only have to process exponentially-forking paths but determine how much of the forking was due to Ben (or Dave) and how much was due to Sarah.

Thus, the only social intelligence that could possibly exist in a situation like this is that of the entire group of individuals currently interacting. There is no such thing as social "skill."

Of course, some people do well every time they choose to interact, while others fail every time. The saying "the common denominator is you" does apply to some extent. But consider that even the most socially unsuccessful person acts not in a vacuum but in response to others' behavior. Furthermore, very few are truly uniformly socially unsuccessful. Many experience positive interactions and long-lasting relationships when allowed to interact with people of different ages rather than age peers, or people who share common interests and experiences rather than only geographic proximity. Autistic people can often connect deeply with NT family members, and even those who cannot figure out how to connect with NTs often develop friendships with other autistic people with comparative ease.

This lack of uniformity suggests that most of the time, when an interaction fails, it is due not to one person's lack of social skills. Rather, it occurs because of mismatches between the individuals involved. They might desire something different from their interactions (e.g., "small talk" vs. "deep conversation" about feelings or values vs. intellectual debate). They might have different interests or values (reality TV vs. indie bands, anime vs. political activism). They might use different body language norms (e.g., interpreting lack of eye contact as unfriendly vs. viewing it as polite). An extreme introvert and an extreme extrovert could annoy equal numbers of people. Social norms that served you well growing up may make you unpopular if you move across the country or even change schools or jobs.

Arguably, almost no one is inherently a social failure.

Thus, our approach to people who don't fit in is fundamentally misguided. This isn't just an academic issue; treating social functioning as a skill can do real harm. Many people see a person not fitting in and say, "this is happening because they have poor social skills," but they ignore the provocations that led the person to behave in this socially unacceptable way, and they do not tell the provocateurs to stop contributing to the person's isolation.

For example, in second grade, Adam was "friends" with two boys in his class, Bob and Chuck, who teased him mercilessly. After a while, Adam would lose his temper and yell at them, and once in a while he hit them. His teacher would lecture Adam for his loud, obvious misbehavior, and treated the bullies almost as "teacher's pets." This injustice really made Adam lose control. One might dismiss this teacher as simply oblivious or uncaring (and indeed, she happened to be a bad teacher), but plenty of kind, attentive people say similar things and act in similar ways, especially when it comes to children with autism. The result is to condone, and even implicitly support, bullying, and to blame one child for the faults committed by all parties.

As the quote from Amanda Forest Vivian suggests, many autistic self-advocates would agree that social interactions are not matters of "social skill" and each person's contribution matters. Thus, we should not always blame the autistic person for their social failures and expect them to do 100% of the changing while allowing truly egregious NT behavior to continue. However, I perceive many autistic self-advocates as going to the opposite extreme. In reaction to being told all their lives to do all the work and changing, they seem to hand the responsibility entirely back to NTs. Ironically, this would support the idea that people with autism are less socially skilled than NTs--otherwise, they would be able to handle an equal share of the social load. These self-advocates' attitude, while understandable, is not only unrealistic, but it may turn off people who might otherwise support them.

On the other hand, much of the therapy to which we assign autistic children does operate on these false assumptions and place all the onus on autistic people to change, ignoring our own contributions to their social failures. All of us--parents, friends, teachers, clinicians, and researchers--need to reexamine these assumptions and revise how we treat autistic people accordingly.

*I just went back and read through many of her entries trying to find this quote and link directly to it, but I couldn't, so I'm linking you to her entries on social skills instead. They're pretty interesting in their own right.

Cathy Lord's Longitudinal Autism Study

2011-12-16T00:00:00.000-06:00

Some time ago, I was lucky enough to be able to attend a talk by Cathy Lord on her recent longitudinal study of children with autism. Two hundred kids from several states entered the study at age 2 or 3 and were followed up at ages 5 or 6, age 9, and as adults. They are now about 21 or 22. Because the study began over 20 years ago when fewer high-IQ people were diagnosed with autism, many of the participants have intellectual disability.

Dr. Lord wanted to know:

Diagnosis: How stable is an autism diagnosis made at age 2 or 3? What are the best predictors of having an autism diagnosis at age 9?
Autism symptoms: How do DSM-IV autism symptoms change over time?
How does cognitive ability (esp. IQ) develop over time?
How does language develop over time? What predicts whether a person develops expressive language or remains nonverbal?
Outcome: How do people diagnosed at age 2 or 3 function in adulthood? How do they do in school? Do they work? Do they have friends?

Diagnostic stability

Of children diagnosed with autism at age 2, 76 retained this diagnosis at age 9, 13 were downgraded to PPD-NOS, and 1 was found not to be on the spectrum at all.
Of children diagnosed with PPD-NOS at age 2, 27 were diagnosed with autism at age 9, 11 retained this diagnosis, and 6 turned out not to be on the spectrum.
Of children found not to be on the spectrum at age 2, 2 were diagnosed with autism at age 9, 9 were diagnosed with PPD-NOS, and 34 continued to be NT.
In other words, diagnostic stability is pretty high both for the obviously autistic kids and the obviously NT kids. For kids in the "gray area" who receive a diagnosis of PPD-NOS, however, stability is quite low. Interestingly, it's not because "normal" kids are getting pathologized--most of the misdiagnosed kids turned out to be more severely autistic at age 9.
The best predictor of having an autism diagnosis at age 9 was clinical diagnosis at age 2.
Repetitive behaviors at age 2 also predicted diagnosis, as did parent reports of unusual communication.
Formal tests of verbal skills at age 2 predicted autism diagnosis at age 9, but interestingly, did not predict later verbal scores very well. (No, I'm not sure what this means).
Also interestingly, parent descriptions of social behaviors at age 2 did not predict an autism diagnosis at age 9.

Changes in autism symptoms

Between ages 2-14, calibrated ADOS scores changed in different ways in different kids.
40% of the group were called "persistent moderate." They consistently had moderate ADOS scores.
40% of the group were called "persistent severe." They consistently had severe ADOS scores.
10% of the group decreased in ADOS scores.
10% had increased ADOS scores, but actually this was driven by a mix of kids who went up and down a lot and kids who started out with mild scores and later increased.
Symptoms can change over development, but the diagnosis remains stable. For example, one child was always outgoing and socially directed, but as his language skills improved, his eye contact became less frequent and his facial expressions more muted.
There were changes in activity level and motor skills. Children who were coordinated at 2 were often less so at 9.
The relationship between verbal and nonverbal IQ can change over time.

Language Development-Predictors of Verbal Level at age 9

At age 2, nonverbal IQ was predictive of later language development, while verbal IQ was not.
Active parent participation in ANY sort of treatment before age 5 was related to improved language development.
Children with an initial PDD diagnosis ended up slightly better off than control NT kids with early language delay, while children with an initial autism diagnosis did way worse.
Participants broken into several groups with different developmental trajectories. While all started out at roughly the same (low) point, they differed both in rate of growth and where they ended up.
Of kids with autism diagnoses, a few had rapid growth in verbal ability and ended up with high scores, while most developed very slowly, with a few ending up with close to average scores and most below average.
For kids with extremely low verbal scores on the Mullen test, the gap between nonverbal and verbal IQ ranges from 10-40 points.
Nonverbal IQ tended to be higher than verbal IQ, but when verbal IQ increases, so does nonverbal IQ.
Verbal and nonverbal IQ both seem to predict language ability. For children who had poor expressive and receptive language, the average verbal IQ was 66 and the average nonverbal IQ was 76. For those who had poor expressive but intact receptive language, the average verbal IQ was 84 and the average nonverbal IQ was 100.
Out of the 200 original participants, only 84 had no words by age 2. 13 of these had low nonverbal as well as verbal IQ, and thus could be expected to have language delay. Of the remaining 61, 39 had some expressive language by age 5, while 22 still had no words. I have no notes on how many were still nonverbal by adulthood, unfortunately.

Life outcome

Dr. Lord reported that there were 2 highly successful groups of participants. In what she called the "optimum outcome group" were 8 people who have jobs and are going to university. While they originally had ADOS scores of 12, they now score close to 0 and do not look autistic to the untrained eye. The other successful group consisted of 10 participants who still look very autistic but have age-level adaptive skills, are doing well in school and at work, and had a steady but less dramatic decline in ADOS scores (from ~13 to 6).
Everyone in the "optimal outcome" group was white, from a two-parent family, continued living near where they first grew up, and had good academic skills.
These 2 successful groups were the only ones with dramatic verbal IQ increases, from the 50's to almost 100. They showed the most dramatic verbal IQ increase after age 5.
While most participants showed increasingly wide gaps in adaptive living skills compared to peers, the two successful groups went up.
There was no difference between the two successful groups in the interventions they participated in.
It looks pretty bad that only 10% (20/200) of Dr. Lord's participants ended up with "successful" outcomes. Cathy Lord thought this might be due to the large number of intellectually disabled people in the study, and said this was actually an improvement compared to previous longitudinal studies. In one earlier study, 50% were nonverbal as adults, whereas far fewer were in this study.

This was a very important study, but I had a few problems with it.
1. It stigmatized people simply for "looking autistic."
After Dr. Lord's talk, I asked her if there were any differences between her two successful groups other than whether they "looked autistic." While I didn't say this, if there were no functional differences between the two groups, calling one the "optimum outcome" group simply because they didn't look autistic is discriminatory. She replied that the two groups were very similar, but the "optimum" group did slightly better socially. While neither had many friends, members of the "optimum" group sometimes had a close friend or two. This is definitely a functional difference, but I'm not sure whether this is due to the "optimum" group having better social skills or the fact that NTs discriminate against them less because they look less autistic, and I think she should have been more reflective about the ethical issues here.

2. It didn't look at sensory symptoms, even though they're likely to relate to functioning and autism severity.
When I asked her about it, she said she did look at them, but indirectly, as these were in the "repetitive behavior" category. This despite the fact that as far as I know, it's been assumed rather than established that there's a close connection between sensory abnormalities and repetitive behavior. I think this was a major weakness of the study and I would have looked at sensory symptoms separately.

3. At least in this talk, it didn't address the role of support (other than autism-specific interventions) on outcome.
Yet the successful participants who learned to pass clearly had plenty of support--in particular, they never went through the stress of divorced parents or extensive moving. It seems their parents had plenty of social and economic capital to invest in them. I hope the data is published soon, because I'd like to see how much of functioning was due to participants' own early cognitive characteristics and how much was due to how they were raised and what sort of support they received.

4. What does it mean for the diagnosis to be stable if the underlying symptoms change? Is this actually meaningful at all?

TL;DR summary: It seems that people about my age who grew up with autism end up a lot better off than previous generations who've been studied, but there's still lots of room for improvement.

Gratitude

2011-11-26T14:36:00.002-06:00

As many of you know, my brother has Asperger's syndrome. Looking back on the eight years (wow) since he was diagnosed, I feel overwhelmingly grateful for all the skills he's learned and the confidence he's gained. While my family and I have supported him every step of the way, all the hard work has been his. Here are all the ways we've been blessed the last eight years, in no particular order.

He was diagnosed in a time when a concept of learning disabilities existed, so we knew he wasn't just a bad kid.
He was diagnosed at a time when we knew refrigerator mothers don't cause autism.
He was diagnosed at a time when kids with autism weren't automatically institutionalized. We knew college, a job, and independent living were possible for him.
He was able to get speech/language, visual-motor and social skills coaching when he needed it.
His therapists never abused him (not even "quiet hands" style).
When he needed it most, he had teachers who loved and understood him and a school flexible enough to accommodate both his disabilities and his brilliance.
Even when his behavior was at his worst, his school never gave up on him and kicked him out.
My parents struggled with his diagnosis, but they didn't feel like they lost their child (or communicate that to him). They never grasped at pseudoscientific or dangerous cures.
He can communicate his thoughts, feelings, and needs, verbally and nonverbally (though mostly, he talks about video games and Dungeons & Dragons! :D).
His peers like his sense of humor and accept him. Not bad for high school. He doesn't get invited to parties much, but he'd probably say parties are overrated anyway.
He's learned to prevent himself from having meltdowns, particularly at school.
He was once unable to write (organizing his thoughts was too much, especially combined with the physical effort of writing). Now he's a prolific and creative writer.
He's learned to understand metaphors and figures of speech, ask about what he doesn't understand, and use quotes in an appropriate context. If you hit on a topic of shared interest, he's an enthusiastic and witty conversationalist.
While he's still a picky eater, he's expanded his repertoire considerably.
He can now usually pass. (We have always told him he can choose to break the rules, but he's got to know what they are).
He's made a friend who shares his interests!!!
He works hard to be polite and kind to others, but he's not willing to turn himself into someone else to be popular. He'd rather hold out for true friends. (If only more NT kids had that kind of backbone!)
The world is no longer a terrifying, senseless place to him.
While he knows he has things to work on, he's confident in who he is.

He's happy, confident, functioning well, and yes, still quirky and aspie. I wish we could have seen this eight years ago.

I hope my Internet friends with autistic children will have similar changes to be thankful for. I hope my Internet friends with autism have found, or will find, the same confidence and inner peace my brother has. Happy Thanksgiving.

What's Next?

2011-11-25T22:55:00.000-06:00

While writing my grad school applications, many blog entries have been percolating. Which of these would you be most interested in reading next?

How psych & neuroscience researchers contribute to the stigma against autism and other disorders, and what can be done about it
My take on the divisiveness in the autism community.
Why social skills are probably not what we think they are, and why this will please and irritate both neurodiversity advocates and their opponents.
What does it mean that checklists of gifted traits read like the positive interpretations of ADHD or ASD traits? Are they the same traits interpreted through a different lens? Are these just the same behavior occurring for different reasons? What does it imply for diagnostic validity for all of these categories? And why are there so few empirical studies on this (AFAIK)?
Diagnostic validity: a recent study showed autism tests could reliably identify non-NT kids, but couldn't accurately distinguish kids with autism from those with other disabilities. Studies continually show overlaps in genetics and symptoms between ASD and ADHD. What does it all mean? How can researchers deal with this problem?
The importance of good visual and auditory processing for school learning

(There's a few others in the pipeline, but these are the ones I find most interesting and easiest to write).

Feel free to discuss these topics, too--I look forward to hearing your thoughts!

Autism 101: A guide to Autistics Speaking Day, 2011

2011-11-05T23:13:00.001-05:00

If people really want to understand Autism, they should be listening to Autistic people. We are the experts of Autistic experience. Ignoring us won’t make us go away. – Corina Becker

Last week was Autistics Speaking Day, an event where adults with autism had the opportunity to educate others about their lives. You can read more about the history and purpose of the event here. I was overwhelmed by the sheer number of posts--I counted close to a hundred--so I can only imagine how intimidating keeping up with the event must have been for people unfamiliar with the autism community. This is unfortunate, since part of the purpose of Autistics Speaking Day is to bring, not merely awareness, but true understanding to people who have little exposure to autistic people in their daily lives. Thus, I'm posting an idiosyncratic guide to Autistics Speaking Day 2011.

This guide will focus on two basic ideas:

1) What autism is like. How does it feel to have autism? How does autism affect daily life?

2) What obstacles autistic people face in an NT world, and how they seek to overcome them. The stigma and invisibility autistic people often face. Methods of self-advocacy.

In the interests of space, I'm only including posts by people with autism, although several non-autistic parents wrote very sweet and supportive posts. I've attempted to include all entries by autistic people focusing on these important themes, but I may have missed a few, so let me know if I haven't featured your post.

If you want to deeply immerse yourself in the world of autism, you should read the whole entry. If it's TL;DR, just check out the "Autism 101" links.

Note:

*** refers to posts that changed the way I looked at autism and gave me new things to think about.

* refers to posts I found either particularly interesting or particularly well-written, for various idiosyncratic reasons

Autism 101

1. "25 Things I Know as an Autistic Person" by Corina Becker

This inaugural post is a classic.

2. "10 Things You Should Know About Autism" by ThoughtyAutie

3. "Speaking Up For, and Busting Myths About, Autism" by Normal is Overrated

4. Sarah debunks 13 myths about autism

5. In a 4-part series of posts, [here, here, here and here], members of the autcast.com community share things they want to communicate, but can't.

6. "Just because I can't speak doesn't mean: 1. I'm unhappy 2. I'm "not really there" 3. I'm less of a person or 4. I don't have anything to say!" -Lydia

7. "Three things to remember about autistic people: we're smart, we're monotoned and we're great in bed.....Well that's not all true; we're not all monotoned." –Jacob (Did I mention they also have a sense of humor?)

8. You can't necessarily tell whether someone is autistic by looking at them...any more than you can tell if someone is religious by looking at them.

9. "Stop feeling sorry for me because my son is autistic, he's taught me more about being a good parent than I've taught him on how to be a good person." -Tina

What does it feel like to be autistic?

1. One's senses are extremely powerful. This can make the world beautiful, but also painful.

As sorry as you might feel for me staring quietly at patterns on a carpet while others chatter away, I feel just as sorry for you, unable to see how wonderously beautiful ordinary things are while you desperately try to fill in silence that doesn't need filling. I don't see how I'm the one who's "empty" here. –Heidi

the world is an intense place. It screeches and screams, burns, freezes, and bursts into brilliance. It’s a place where words are too small to express the explosion of emotions flowing out of me — a place where words have yet to be invented to express a fraction of the howling fury of frustration and panic, the aching heartbreak, the stabs of betrayal and embarrassment, the abyss of despair and confusion, the weightless ecstasy of joy, the soaring heights of pure wonder, and the warm embrace of security that I feel. - Corina Becker

2. Paradoxically, even though the sensations coming from the outside world are so intense, it can be hard to pick up the sensations coming from one's own body.

Most of the time, I have no real awareness of my body. This means I’m not sure where it is in space, what it’s doing, and how it’s feeling.-Danni Brennan

3. Daily life can be exhausting, particularly when it involves communicating with other people.

"Communicating with people uses a lot of energy. It takes energy to listen to people, process what they’re saying, and then respond in a way that they can understand. ...I am verbal most of the time, but I have more times of being non-verbal than I used to, since I became more ill. I become non-verbal when I’m overwhelmed." -Danni Brennan

Every morning, I look at my todo list, get overwhelmed, and start my work day. The list is always long. I use software to prioritize tasks and to view them in very focused ways. Otherwise, I would not have any idea what to do first. If I have to think, I am doomed to spend hours in a state of confusion while rapidly alternating between hundreds of things for 30-60 seconds each. Very bad for productivity to say the least… When I am not serially uni-tasking at rapid speeds, I can usually be found doing the exact opposite, hyper-focusing on one thing for hours at a time. –Lori

4. When all this exhaustion and overstimulation really becomes too overwhelming to handle, one might have a meltdown, shutdown, or panic attack.

A meltdown is similar to a panic attack in appearance (I also experience panic attacks) but it’s not the same inside. With a meltdown I lose complete control. I say my brain explodes, as that’s how it feels. I’m so overwhelmed by all sensory input, all my internal feelings, all emotions that I just can’t cope. I may scream, may hit, bite or scratch myself (I keep my nails short after scarring myself during a meltdown), and there’s nothing anyone can do to stop it other than wait it out. Unlike a panic attack, I don’t have enough control to end it as I can’t think at all, it’s just a massive amount of badness in my brain. Afterwards I’m completely exhausted, and need to sleep.
A shutdown has the same brain explodiness, but instead of it being expressed outwards I just stop doing anything. I don’t move, don’t respond to anything, can’t hear, can’t think. I will remain in the same position for however long it lasts, which can be hours. Again, it’s exhausting and I’ll need to sleep when it’s over. -Danni Brennan

Or...one might just run away (metaphorically speaking, that is).

Other people though I lacked suitable work or relationships because I was lazy, too picky or simply did not try hard enough. in reality, it was the highly tuned instinct of a prey animal frightened of living in captivity.
However, although I excelled at being a prey animal, I was not ahappy one, and I suspect that most aspies are unhappy in the victim role to the world has relegated them. True prey animals in the wild have the solace of the herd, and that is the one comfort that autistics most sorely lack. We are usually loners and not always by choice. The true loners of the animal kingom --the cat, the owl, the wolf --are hunters, not prey. -Charlie Devnet***

5. People with autism love, but they don't always show it in the usual ways.

With my boyfriend, I grind my head against his, I squeeze his hand. I growl softly. Most of my more genuine acts are unusual from the traditional displays of affection. Yes I kiss, but french kissing isn't a favorite of mine, I like rubbing against him and being tickled. Those to me are the most intimate of acts next to making love. I also know when he says I love you, when leans on me. When he kisses the top of my head. It gets to the point when he kisses my cheek I say. "I love you too."-Bard

Conversely, when they do give the expected gestures of affection, they may actually be doing it to appease the other people in their lives.

I use affection in the same way a dog might roll over on it's back. It's not out of love sometimes it's out of fear. I am afraid of being abandoned or yelled at, so I shower my dad with kisses or hugs and "I love yous" it's not out of tenderness but submission. I just want to make sure, dad isn't mad at me. It's childish, but it's an act that I can't shake. -Bard

6. Perhaps most of all, autism is about uneven functioning. For most people, if you can write your name, speak fluently or tie your shoes today, you can do the same tomorrow. If you can get an A on the spelling test, then as long as you work equally hard, you can get an A on the next one. It doesn't work that way in autism, no matter how hard one works. Sometimes, unpredictably, one stops being able to do things one could do previously, only to be able to do them again later. It can be hard to understand why one loses functioning, or predict when it will happen. This is one of the things people find hardest to understand about autism.

Actually my son said it best to his developmental doc "they think because I did it once, I can do it all the time...some days everything is bothering me and I just can't, I want to, but I can't". He was talking about writing, but it really applies to everything I see him struggle with. –Bari

my hope is that by sharing my point of view, NT’s may understand why I will not always meet your expectations. As one of my readers recently put it, “Too many people are not aware of how far out of our ‘skin’ we go to do things sometimes. Some of them don't realize how it is to push yourself on things that come easy for them.” –Matt *

“Part of being autistic is that things do not always go according to plan. Part of being autistic is that I can’t always synch up with everyone else. Part of being autistic is that I can’t, in fact, deliver meaningful content and communication whenever I’d like–or, really, whenever other people want me to. Part of being autistic is that I can go months without anything much to say at all, really. Part of being Autistic is knowing that that’s okay. –Julia Bascom

Please, please wait for me to find the words to say what's on my mind! I can't translate my thoughts into words as fast or easily as you can, and sometimes I just can't retrieve the right words at all. If only I could wire up a projector to my brain and stick it to my forehead so I could show you my thoughts rather than tell you. –Niamh

7. Because people don't understand this uneven functioning, autism is often about being told you can and should do more and better, even when you can't.

Because I appeared intelligent, people could not fathom that I would have difficulty understanding basic things like figures of speech, subtext, visual-spacial perceptions, and pop culture references. I could not, in their minds, have legitimate difficulties, so I must have been rude, or lazy, or intentionally obtuse. The slightest mistake would undo my hard-earned status of hyper-competent and instantly reduce me to my childhood status of “insane.” As I was so intimidated by the prospect of being outed, I learned to nod along and feign understanding. Appearing competent became much more important than being competent, which led to some of the most devastating poor decision-making of my life. -Kyriolexy *

many of us carry with us a sense of shame. If you are a neurotypical (NT), I would like you to understand where this shame comes from. Because every day, however unintentionally or implicitly, you expect us to behave as neurotypicals do. This is an expectation we cannot meet.

I have been told, throughout my life, I have so much potential. I could do so much more. If only I would learn to be more outgoing. I heard it as a child, before anyone knew I was autistic. I still hear it as an adult, from people who know I am an Aspie. ...

“I can’t do what you ask,” I told them.

“Not can’t,” they said. “Won’t.”

They were so sure. Scornful, even. As if my choice was obvious. As if I was sitting on a treasure chest full of potential, and chose not to unlock it to see what was inside.

But at the time, I could not help but develop a sense of self-doubt. A sense I would never be good enough. A sense of shame. ...

As an adult, learning about the autism spectrum lessened this burden somewhat, but not completely. Our world is an NT world. It will always be an NT yardstick we are measured by. Our world values smiles, phone conversations, small talk, and fitting in with the group. It values extroverts.

As an adult, I continue to receive constructive criticism, well-intentioned, to help me reach my potential. I’m not enough of a leader. I’m not assertive enough. Not engaging or friendly enough. It still hits like a punch in the gut.

I can explain now, that I am autistic, and I may not meet these expectations. I am glad to say people are more understanding, when they know. It still bothers me though, to fall short. - Matt *

9. Because people with autism function so unevenly, you can't look at an autistic person at work and predict how well they function at home (or vice versa). Sometimes, a person with severe handicaps can compensate and function well, while a person who seems normal and intelligent may, on the inside, not be that different from a severely handicapped person.

The "trick" to my survival is that even though I have perceptual difficulties; even though I have significant gaps in my capacity to understand social cues and body language; even though I have serious deficits in executive functioning; I have been able to leverage my native intelligence sufficiently to build a workable model of reality. One that gets me through life even if my life is not triumphantly successful. –Bob Castleman*

it is often astonishing to me that, while I am outwardly "almost normal" (I'm regularly called strange, odd, weird, etc), I find that my internal states and thinking patterns resonate far more harmoniously with the descriptions by severe autistics using various forms of assisted communication. It is very disconcerting to read something written by an autistic living in an assisted living setting, someone that cannot function in "normal" society, and understand EXACTLY what they are describing. It is unnerving to find that my true compatriots are actually those that this society calls "abnormal", "dysfunctional", "impaired" and "disabled". - Bob Castleman *

10. Autism can also involve deep and constant self-doubt, whether a person is diagnosed or not. Part of this comes from how people with autism think, part of it comes from knowing they're different than everyone else, and part of it comes from how we raise and teach them.

There are four learned men on a train travelling through Scotland. As they are looking out the window, they see a sheep. "Ah," says the first man. "Sheep are white in Scotland." "Some sheep are white in Scotland," corrects the second. "At least one sheep in Scotland is white," adds the third. "There exists in Scotland a sheep which is white on this side," says the fourth man, and returns to his book. Autists tend, as a rule, to be like that fourth man. ...We doubt. But because of a lifetime of being the odd one out, of being the one quiet dissenter in what appears to be a sea of unanimity, we most of all doubt ourselves. There's always that niggling voice in the back of your head whispering "... or maybe it's just you." Or maybe that's just me. –catsidhe ***

It's really, really hard to put your own experience to the front, and have the strength of will to assert, even to yourself; "Maybe everyone else is wrong." Especially so when your entire life has been the experience of being the one who is the odd one out, whichever group you are in. –catsidhe***

“I’ve spent most of my life feeling like something was off, but I didn’t know what it was. This can lead to an incredible sense of insecurity, especially for a young person. I knew that sometimes I did things that other people didn’t like or understand. Once I realized that I was not always acceptable, I started to feel that I couldn’t trust my own judgement… In my adult life I’ve worried about relationships, walked on eggshells trying not to upset people, all the while ignoring my own feelings. When someone else got upset with me I automatically assumed it was because I was wrong and was bad at relationships. –Britt***

“So, teach us how to start a conversation politely or how to make proper eye contact. But also teach us that we are unique individuals who have as much right as anybody else to express how we feel. It is important to accept constructive feedback from others, but we must not let other people decide how we should feel or what is in our best interest. We must have the confidence in ourselves to make these decisions in order to be healthy, happy people. And, we must stand up for those decisions, even when other people don’t understand them. You are the only person who knows what is right for you. Trust yourself. –Britt***

Neuroatypical children are taught, effectively, to be people pleasers, to place their self worth in how much other people like them, and in turn consider it a fault with themselves if someone does not like them.-Louise*

11. Not everyone with autism was diagnosed as a child. Some only figure it out well into adulthood when their kids are diagnosed or they happen to read something about autism and feel a sense of recognition.

I led what seemed to me to be an ordinary life: Career, two marriages, daughter, granddaughters, retirement, and hobbies; except, in a million ways, I wasn’t like anyone else. –Randy Brachman*

That is the journey: Learning the rules of behavior of a foreign culture. Each day you get a little better. Each mistake teaches you a little more. Your foreign accent fades a tiny bit. You are better integrated into the NT (neurotypical) culture, but it will always be a foreign country. The language in NT land is always a second language, the customs still strange.- Randy Brachman*

For the first few months [after diagnosis], I felt as if a dozen stormtroopers had marched into my life, dragged me away, and put me in a camp for those society had discarded. I stood behind a wire fence, looking out. I could see the world, going on without me, but I was no longer part of it, and I wasn’t wanted out there. I was caged, with all the abnormals, and even if I one day escaped, the prison would always be there, in my mind. –Tielserrath*

[When meeting with other autistic people, ] Often the shock of recognition, of shared experience, brought me close to tears, because each episode made it harder to deny the truth of what I’d discovered. And I needed to deny the truth, because its existence shattered all the hopes I’d had for the future, of love, and companionship, of family and friends. –Tielserrath*

Furthermore, not all people diagnosed in adulthood were only "mildly" affected.

12. Contrary to the popular stereotype of people claiming to have Asperger's as an excuse for rude behavior, it can be extremely difficult to "come out" as autistic.

If unpleasant people find out about my diagnosis, they’re likely to find ways to be patronising, or downright nasty. But I still prefer that to the hippy types who tell you that autism is wonderful, and a special gift, when it’s clear they haven’t the minutest grasp of what it actually is. Then there’s the people who instantly deny your diagnosis, in a way that suggests they’re doing you a favour. And the ones who don’t want to be told anything about it because knowing you’re not normal spoils their image of you. -Tielserrath *

When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information. –Lydia

When I mention pretty much any of my diagnoses other than Asperger’s, people mostly just nod and accept it. Of course it’s possible to be a successful human being and also have ADHD, OCD, or tics. But whenever I mention the Asperger’s diagnosis, the response is frequently something along the lines of “really?”, “I find that hard to believe,” or “maybe, but it’s very mild.” After all I have excelled academically and have a job at which I’m competent, and not even as a scientist or programmer or one of those other jobs that people on the autism spectrum are supposed to be especially good at. How can you even BE a lawyer and have Asperger’s?
This sort of response is exactly why I haven’t explicitly disclosed this diagnosis to more than two people whom I know professionally. I want people to perceive me as a competent employee or co-worker, so I can’t exactly respond to their skepticism by listing all of the things I can’t do or have significant trouble doing. I’ve spent years learning essential career skills, often to the exclusion of general life skills, and consider myself highly competent at activities relevant to my work performance. But if I start listing all of the non-work things that I have trouble doing, there’s always the risk that someone will have a hard time believing that I can’t do those things but can still work.
...So far, I’ve settled into the habit of saying something along the lines of “thank you, I worked hard on that skill, and actually Asperger’s involves a range of sensory and attentional differences aside from social conversations. In fact, I was mainly mentioning my Asperger’s diagnosis to explain xyz,” where xyz is usually a past experience, a sensory or attentional issue that I’d like to be acknowledged or accommodated, or a very specific “social” issue such as my extreme difficulty remembering people’s names or faces. –TwitchyWoman at WeirdLaw*

disclosing a disability – especially one as stigmatized as autism spectrum disorder – is a minefield even for people who are highly socially competent. –TwitchyWoman at WeirdLaw*

How does being autistic affect daily life?

*“Autistics Speaking Day” by Lori

The challenges and benefits of autism when running a freelance business

“In the closet: autism at work”

Fryfan20 points out that in the workplace, many autistic people are “In the closet.”

“A Slow Adjustment”

John Charles Saunders shares the challenges of adjusting to graduate school

*“How Autism Made me a Better Parent”

Bridget lists 7 ways autism has made her a better parent.

“My Sense of Humor”

Julian Edward Frost describes his sense of humor.

Stigma, discrimination and invisibility

People with autism are caught between stigma and invisibility.

Those who are visibly autistic, particularly those who have difficulty speaking and living independently are often seen as incompletely human and as burdens on society.

Being autistic is being set up to fail again and again, and having your inevitable failure attributed to your disordered brain.
Being autistic is being set up to fail again and again, and succeeding anyway and having your success attributed to treatments.
Being autistic is succeeding anyway, and being told that your success doesn’t matter because you still aren’t what your parents wanted.
Being autistic is having strangers pity your parents because of you.
Being autistic is having strangers express their pity in your hearing, because you obviously can’t understand them.
Being autistic is being bullied and abused every day and being sent to therapy for it, because you’re the one whose social skills are considered lacking.
Being autistic is expressing what you think, feel, and desire, and being told that you are in denial.
Being autistic is having other people dictate how you really feel.
Being autistic is being denied the things you enjoy “for your own good.”
Being autistic is being told so many times that your pain is pleasure and your pleasure is pain that you come to believe it.
Being autistic is being driven to extreme frustration every day, and being autistic is having the frustration inflicted on you blamed on your autism.
-Kyriolexy *

this is what society does. It makes us the unendurable other, the person in need of a cure, the stonelike nonentity who can be bullied with impunity because we have zero empathy. That we don’t understand is no excuse for our failures. We should be silenced. The pain of our lives is the pain we cause others, not the pain we endure and bury deep inside. We are a genetic mistake, normal people locked in a cage of inappropriate behaviour. We have no understanding of the minds of those around us. We are difficult, contrary, incomprehensible. And as long as these are the myths they build in our names, nothing will change.–Tielserrath*

You discover that Autists aren't really people, they're more like soulless shells in human form. You discover that you aren't your parents' child, but an empty changeling left behind after the Autism fairy visited and cursed your family. You discover that Autists don't feel emotions; we're like psychopaths, but we're the "good" kind. –catsidhe***

Because we are autistic, it’s presumed we can’t speak for ourselves, don’t know what we want, can’t articulate it if we do, and if we can and do speak, it’s presumed (and we are told) that what we’re saying isn’t valid, because “that’s just your individual opinion” (even when we make plain we’re speaking for a group), and “we know what you need” (better than you do, is the implication), or even that “if you can talk, you’re not really autistic” (despite our real and ongoing difficulties with life). –StrangerinGodZone

Those of us who fought through our own deficits, low expectations, parents who misunderstood us, teachers who considered us ineducable, and sometimes violence to reach the professions carry scars nothing can erase. We are the lucky ones. –R. Larkin Taylor-Parker*

When all of a disabled person’s actions are categorized as “behavior” that needs to be changed to look a certain way–instead of as communication–this is the act of taking away someone’s voice. –Amanda Forest Vivian

Am I allowed to have a personality and preferences, or just perseverations? –Julia

In the best of all possible worlds we can create, we will still be expected to explain ourselves to others in ways that no neurotypical person would have to do. We will still frequently face assumptions and stereotypes that require us to work twice as hard for the same results.Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment… Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are. –Ari Ne’eman*

Meanwhile, those who live independently and can pass for neurotypical (the normal brain) suffer because others assume they're neurotypical & treat them accordingly.

I am, technically speaking, one of the lucky ones- but after battling long periods of depression and very low self-esteem, I certainly don't feel lucky. Which begs the question... if I, one of the 'lucky' ones, can get hurt this badly, where does that leave people who had it worse than me? –Louise *

What’s called a lack of social skills for me — and requires me to undergo therapy when I mess up — is considered being rude for everyone else.- Corina Becker

Even speaking about their lives for events like Autistics Speaking Day is a double bind.

Frankly acknowledging the hardships we face is interpreted by anti-autistic factions as evidence of the inferiority of our condition, proof that autism is suffering and we would be better off cured. Emphasizing, instead, the benefits, strengths, and exceptional abilities of autism, though, brings charges that we are whitewashing the disadvantages, or that we are so minimally impaired as to be not really autistic. –Kyriolexy *

Many of the difficulties people with autism face stem not from their own deficiencies but from discrimination and barriers to access created by neurotypicals. First of all, many autistic people seem a lot more disabled than they really are because we expect them to be disabled and see our preconceptions, not the reality.

When some aspies challenged members of one autism organisation committee on their claim to speak for adults on the spectrum, they were told ‘we know best’, and that, even though they weren’t on the spectrum, the members considered themselves ‘qualified’ to speak for autistic people, and ‘not in need of input from autistic adults’.
I should note here that these aspies are mostly past forty years of age, some have advanced degrees, all have relevant life experiences or skills, and are articulate and self-aware. I’m not entirely sure what’s going on in the heads of the members of such organisations, but it does seem obvious they see us as ‘incompetent’ and ‘defective’ somehow in our capacities, and in need of their ‘help’ and ‘management’. This is the ‘deficiency’ model of autism, which many of these organisations are still actively promoting – and given that they are seen as the ‘experts’ on autism, where they lead, the general public, and governments, will likely follow...This model has become a brick wall, a blanket to smother us and keep us helpless and silenced. It is I believe our own personal Berlin Wall, and like that ghastly symbol of oppression, it needs to be torn down. -AStrangerinGodzone

Second, the biological condition known as autism is not a disability unless the autistic person cannot function within his or her environment. Disability is culturally determined, varying across historical time (e.g., dyslexia does not harm members of preliterate cultures); across cultures; and even across a lifetime (e.g., ADHD caused some children to fail in school, but later helped them succeed as entrepreneurs).

I do not suffer from Autism. I suffer from a lack of understanding and support.- Corina Becker

Because autistic people's social problems often come from a mismatch between how their minds work and how other people's minds work, other people have a responsibility to meet them halfway.

Listen to us. Get to know us. Respect us. Include us. Don't put all the onus on us to fit in to your world – meet us half way. And most of all, don't eliminate us just because we're different. –CurlyAutie

For these reasons, some people with autism do not want to be cured. Not surprisingly, they're sick of other people telling them that they should want to be.

My abilities, challenges and perception of the world all go hand in hand. If I were to be "cured" of my autism, the person that I am would cease to exist. –CurlyAutie

We do not want a cure. We do not want to be made normal. We do not want to prevent future autistic children. We want radical social restructuring such that future autistic children are accepted, nurtured, and supported, and we won’t need silence campaigns for our voices to be heard. -Kyriolexy *

When parents say, 'I wish my child did not have autism', what they're really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead'. –Jim Sinclair, Don’t Mourn For Us

This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces. –CurlyAutie

People with autism want to be happy and often want to live independently, but they don’t want to turn themselves into someone else in order to do it. And ultimately, this is what a “cure” means to them. –Matt *

When we argue against cure, we don’t argue against having more skills, having a better life, being a better person, we want that, but we are always going to be autistic, and ultimately the really important part is to know that is a good thing. –Alicia Lile

This perspective, that autism is a difference in need of accomodation rather than a disability in need of a cure, is called "neurodiversity."

I support neurodiversity because I am yet to meet a neuroatypical person who has not suffered from stereotyping, bullying, and discrimination at one stage or another, and I support neurodiversity because for many of these people, the discrimination has come from parents and teachers they should have been able to trust.

I support neurodiversity because the rate of mental illness amongst neuroatypical people, especially people on the autistic spectrum, is through the roof, and nobody seems to see it as an issue. Many professionals accept this as 'a natural part of autism', rather than looking for an external cause and trying to treat it, like they usually would with a neurotypical patient.-Louise *

who are we to say that every child must have a goal of being athletic, extroverted, and socially graceful? Not even every neurotypical child shares these traits.-Colin Barsily Goodwin & Mika Gustavson

It will always be an NT world. Despite the progress we have made in autism awareness and education, I still feel that I am “chasing typical,” looking for something more that will “complete” me. Is there more of my potential inside that locked chest? Or is there nothing but an empty box? Maybe all that potential is already here, outside the box. Maybe I am squandering what I already do best, in chasing after something more that might be inside.
My hope is that a day will come when I no longer have to compare myself to the NT ideal. When I can stop chasing after what I can’t do, and start going full speed ahead at what I can do well. When I am truly free to be different, not less. –Matt *

We need to accept Autism, we need to feel proud of being autistic, we need to love ourselves. -Alicia Lile

Where people with autism often differ is in their approach to self-advocacy and their views on how to bring about a world that respects neurodiversity. Some would like to see true reciprocity between people with and without disabilities, even if that requires a little effort from people with disabilities...

when it comes to people with disabilities ... too many of us have been taught that it is unnecessary, that it is even an "onus," to wonder what we might need to do, or might offer others, as part of gaining the goods or services that we want, that we need, and that we believe we have a right to. We've been taught to "milk the radio" (or to expect others to do it for us) — and wonder why we're thirsty. –Kate Gladstone ***

...Others demand from society the human rights others already have. They seek salvation in political activism.

Wearing our labels in public will expose us to bigotry. We know the weight of that burden. Will we leave it to children and people with the most significant deficits? There is only one way to stand with them: we who can pass as neurotypical must stop. When we who can speak or write claim the term, we reduce its stigma. If struggling, challenging, individuals are grouped with us in the public eye, society will care about them. ––R. Larkin Taylor-Parker*

Some challenge the non-autistic members of the community--parents, charitable organizations and professionals--to act as real allies rather than contributing to the stigma.

Autistics routinely have our voices co-opted by our allies and diverted by large “non”-profits such as Autism Speaks. Many of us are frustrated by the lack of Genuine Voice that the general public hears from us. Instead of looking at the things that help us live our lives and improve the quality of it, research funding is sent to projects that could potentially prevent us from being born in the first place.

Indeed, when we speak we are dismissed using logical fallacies so that the voices of those who proclaim themselves working for our “own good” can be prioritized. Obviously, not all of our allies are like this. But some are, be they parents, professionals with pet theories, or Organizations whose bottom line would be affected by what we are saying. Those are the ones we are talking about when we talk about how our supposed allies need to step back and stop centering themselves. -Savannah Logsdon-Breakstone *

Others see little hope of sufficient change as long as autistic people are in the minority, and instead look to build a strong autistic community.

The better option has always been filling the gap between what we need and what we can get from society with each other. As we work to make the world better, we can provide ourselves with a place where we feel safe and understood, even if we don’t yet feel that way in the broader society. Every time we speak up about what being Autistic means to us as opposed to those who speak on our behalf, we can empower other Autistic people to do the same thing. Every time one of us comes out of the closet in a place where people don’t expect people with our kind of brain to be, we carve out a little bit more cultural space that we can claim for our community. What if the next generation of Autistic people grew up with the idea of Autistic community and culture an ever-present factor in their lives? What if we took our individual experiences and turned them into a collective narrative, as so many other minority groups have done across history? What if we knew, that even when life was hard and the world at large didn’t understand, that we would always have the chance to connect with those of us who have gone through the same struggles? Whether it’s through creating resources by and for our community – like ASAN’s new Navigating College handbook – or just connecting with other autistic adults informally in social groups or online, I feel that Autistic community is and can be a revolutionary concept. -Ari Ne'eman *

Thanks for reading. Whether or not you agree with the perspectives presented here, I hope they challenge you to examine your views on autism. I hope you will continue to learn from and immerse yourself in the autism community.

The Case of the Impartial Autistic

2011-10-12T11:23:00.000-05:00

A study published in Proceedings of the National Academy of Sciences this week discovered some interesting findings about how people with high-functioning autism make decisions, but it says as much about the often problematic ways we interpret such findings as it does about autism.

Izuma and colleagues wanted to know how autistic people's decision making would be affected by being observed. They tested this by:

asking people to make real money donations to UNICEF under two conditions: alone in a room or while being watched by a researcher.

This is a standard task for studying decision making in neurotypical people. Researchers typically find that people donate more when someone else observes them, presumably in order to look like a good person. Izuma's team wanted to know whether people with autism would show the same effect.

"What we found in control participants - people without autism - basically replicated prior work. People donated more when they were being watched by another person, presumably to improve their social reputation," explains Keise Izuma, a postdoctoral scholar at Caltech and first author on the study. "By contrast, participants with autism gave the same amount of money regardless of whether they were being watched or not. The effect was extremely clear."

To make sure that autistic participants weren't simply ignoring the fact that there was another person, they used a control task that didn't involve moral reasoning, or any sort of decision-making at all. Both the autistic and the control participants had to solve math problems, with or without an observer present. This time autistic participants showed the same reaction to an observer as controls: both did better on the math problems when watched.

"This check was important," says Ralph Adolphs, Bren Professor of Psychology and Neuroscience and professor of biology at Caltech and the principal investigator on the paper, "because it showed us that in people with autism, the presence of another person is indeed registered, and can have general arousal effects."

The research team argues that being observed does not influence autistic people's decision making because they do not consider what others think of them at all. Says Adolphs:

"what is missing is the specific step of thinking about what another person thinks about us. This is something most of us do all the time - sometimes obsessively so - but seems to be completely lacking in individuals with autism."

This may be an intuitively plausible explanation, but if we look at the study a little more closely, we can find other possible explanations that these researchers do not seem to have considered.

First of all, note the strangeness of the decision making task--I'm not sure why it was even chosen in the first place. While Izumi's team talks about this task as if it were a generic decision-making task like any other, moral decision-making is its own domain that involves its own complex set of concepts. Furthermore, as one blogger has already pointed out, it is the autistic participants who make the normatively correct response, from a moral perspective. We generally view giving to help someone else, or to act morally for its own sake, as better than giving to make oneself look good, and our holy figures, such as Jesus Christ, tend to exemplify impartiality. It seems odd, then, to take a deficit perspective on the autistic participants' choices.

Some other possibilities:

What if autistic participants care what other people think of them, but also have a moral code dictating impartial behavior, and it is the latter that determines their moral decision-making?

In this case, one should find that in a decision-making situation without moral content--say, an economic one--that autistic participants show the same pattern as controls.

One could also give them descriptions of hypothetical moral decisions, ask them what the correct decision would be, and then ask them to explain why they chose this answer. If autistic participants rely on a moral code, this should be reflected in responses like "it's just the right thing to do" or "because we should follow x principle." Alternatively, one could use a multiple choice approach, where the answers are code-based, utilitarian ("because this decision has a good effect"), or social status-based.

If anything, the fact that an autistic person often gets negative reactions from people could lead them to be more concerned with others' reactions rather than less. That does not necessarily mean they can understand these reactions. What if autistic participants care what other people think of them, but because of their difficulty reading other people and predicting how they will react, it does not influence their behavior in a systematic way? In other words, it functions as a source of anxiety about an amorphous threat rather than as a guiding force towards appropriate behavior?

In this case, control tasks would need to be designed to isolate caring about others' reactions (maybe using some sort of autonomic measure of reactivity or approach/avoidance) from understanding such reactions.

The study is currently behind a paywall, so I'm missing a lot of information that would help in interpreting the results. For example, how generous are autistic participants, relative to controls? If they follow a moral code, they would make high but unchanging donations; otherwise, they might make typical or low donations. Unusually low donations might indicate a lack of focus on others' needs.

I also don't know about relevant personality or motivational factors in either autistic or control participants. I'm not very familiar with personality research, but people do differ in how much they seek others' approval. If there are measures of this, it might be possible to tell more directly whether autistic people really do seek others' approval less.

Ultimately, what troubles me is that these researchers have taken up a theory of mind based deficit model so reflexively that they do not seem to consider other possible explanations for their results, or address the fact that the autistic participants actually make the more moral decisions. This is a common trend in autism research that I think would be less so if researchers interacted more with the autism community. Most professors oversee and write up their research, but do not actually interact with their participants. In such a situation, it becomes all too easy to see autistic people as a collection of deficiencies rather than as human beings with strengths as well as weaknesses.

Adults With ADHD: 1 in 4 "fakers" may really be telling the truth

2011-04-25T18:02:00.000-05:00

I'm dismayed by a new news story going around the interwebs about adult ADHD. A typical headline: "Adults with ADHD: 1 in 4 may be faking it." The problem with scandalous headlines like these is they (perhaps inadvertently) convey the larger message that adult ADHD does not exist and anyone who claims to have it is just "faking" in order to improve their cognitive performance or get high. The idea that ADHD is a disorder with no valid basis to begin with, invented by pharmaceutical companies to make money and overstretched schools to keep kids submissive, is unfortunately extremely common, and this story only adds fuel to the fire.

I would be less likely to question the dire social consequences of stories like this were the findings actually accurate. But, in fact, a closer examination suggests some major conceptual problems with the study.

A study in Medical Neuropsychologist (which I am having difficulty locating online) examined the medical records of 268 patients and found that 22% of participants who claimed to suffer from ADHD "tried to skew test results to make their symptoms look worse."

Some of those who exaggerated their symptoms actually had ADHD, but embellished their reports to ensure they got diagnosed, said the study's lead author, Paul Marshall, a clinical neuropsychologist with Hennepin Faculty Associates, a medical group that provides services at Hennepin County Medical Center in Minneapolis. Others didn't have the disorder at all, but were having a tough time dealing with their workloads and lives. "A lot of people think they have it because they are struggling, but it's not because of ADHD," Marshall said. "Often times, it's simply depression, anxiety or lack of sleep." Other patients may have been faking symptoms to get access to stimulant medications, Marshall said...And some just want the meds for an inexpensive high, Marshall said.

The MSNBC website also reports on an "informal poll of 100 primary care physicians" conducted by text message for their website as if it were on the same level of reliability as the Medical Neuropsychologist study.

Responding to the text message survey, 38 percent of doctors said they suspected a patient of exaggerating or faking symptoms to get a prescription for ADHD drugs. Some said that a red flag would go up when patients got the symptoms right, but seemed to be exaggerating their severity.

There's an obvious problem here. On what basis can a person be said to "exaggerate" their symptoms? Consider the fact that if a person with ADHD has other assets--particularly high intelligence, supportive surroundings, self-knowledge, and the ability to develop study strategies and workarounds--they can excel at such a high level that others do not notice the disability. For this reason, many people who exhibited clear ADHD symptoms in childhood (and thus really do have the disorder) may not be diagnosed until adulthood, when environmental demands may finally outpace their ability to come up with new strategies. If the questionnaire in this study just looks at how "high-functioning" an adult might be, many adults with ADHD will be considered to exaggerate the impact of their symptoms simply because of their success at managing it.

In such a case, the adult with ADHD will make sacrifices no one around them has to just to keep up with the demands on them. A student may have to give up entirely on having a social life, having a job, or being involved in extracurricular activities, where others may just need to cut back a little. An adult may be constrained in the jobs they can take or the distances they can commute. Most people take for granted the ability to stop working, relax, and enjoy life every so often. In order to keep up, a person with ADHD can almost never do this, which takes a toll on his health. If he ever does get a chance to truly relax, he may not know what to do with it because it may have been years since he last got the chance. This same adult may be a straight-A student or a successful businessman who comes off as perhaps a little more distracted, absent-minded, and addicted to coffee than normal, but certainly not as ADHD. If you ask this person's teachers or coworkers for their opinion, they would rate such an adult as perfectly normal and would perhaps scoff at the idea someone so accomplished could have a developmental disorder. But if you ask the person herself, you will uncover years of struggle and sacrifices. In other words, rather than a suspect source of information, a patient's judgments are often the BEST and MOST RELIABLE evaluations of their struggles with attention, energy, or organization. For who could possibly know more about a patient's behind-the-scenes struggles than the patient him/herself?

There are, of course, some caveats. A patient knows, better than anyone else, how much she struggles. But she may not know why she is struggling. As a brief comment in the MSNBC article pointed out, ADHD symptoms can occur because of depression or emotional and mental stress. Executive functioning problems also occur in many developmental disorders, including the autism spectrum, and in intellectual giftedness. Sensory processing difficulties can mimic inattention (a person who seems not to listen to instructions and can't remember them later may have had difficulty processing the auditory information in the first place). They can also distort attention, as in sensory overload, when everything seems louder, faster, harsher, and yet less meaningful. Certain medical conditions, such as dehydration or thyroid problems, can look like ADHD. Chronic lack of sleep can look like ADHD. And of course, these can, and probably often do, coexist with classic, clearly-diagnosable ADHD. Even an extremely perceptive patient may not know about these other factors or be able to tell which might be causing his problems. That's where the doctor comes in.

So, where does that leave us?
* The odds are quite good that far fewer than a quarter of ADHD patients are faking or exaggerating their symptoms, when we consider that patients are generally the best judge of the severity of their own symptoms.
* However, some of these patients may have something other than ADHD and not realize it. Some proportion of the 25% "exaggerators" probably consist of people like this. This angle should have been emphasized more, but misdiagnosis makes for less sexy headlines than "OMG, PPL ARE PRETENDING TO HAVE SEVERE ADHD WHEN THEY REALLY DON'T."
* People who really are just out to scam the system and get drugs (of course they exist, and I've known some personally) are even more of a problem when we consider that the patient is the best source of information, because they undermine the necessary trust in patients. As some of the doctors in the informal poll pointed out, there ARE red flags, such as requesting specific drugs on the questionnaire and when prescribed alternatives.
* Scammers will be less of a problem when we have better cognitive or neural tests for alertness, attention and executive function problems. Objective tests like this should be used as a complement to subjective reports, and not only as grounds for rejecting them. My guess is that when such tests exist and become widely used, a lot fewer than 1 in 4 adult ADHD patients will turn out to be "faking."

In defense of obsessive interests: Or, what clinicians and researchers won't tell you about ASD and giftedness

2010-12-18T14:01:00.005-06:00

This is how the NIH describes people with Asperger's syndrome:

"The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic to the exclusion of any other."
"Children with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors."
" Children with AS will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it."
"Unlike the severe withdrawal from the rest of the world that is characteristic of autism, children with AS are isolated because of their poor social skills and narrow interests. In fact, they may approach other people, but make normal conversation impossible by inappropriate or eccentric behavior, or by wanting only to talk about their singular interest."

Don't they make these kids sound really unpleasant?

What you're supposed to picture: an awkward, geeky boy (it's always a boy), with giant glasses, ugly clothes, too much pimples, and a loud, monotone voice. He's probably either gangly or overweight, and either way, he's clumsy and carries himself in a way that seems indescribably "odd." You're usually forced into spending time with him. He sits or stands too close to you, making you feel uncomfortable, seemingly desperate for you to like him. He has some unusual interest--obsession, really--like rare butterflies of the Amazonian rainforest, and he knows every imaginable fact about them. Which is nice, except that's all he wants to talk about. He tells you facts about butterflies whenever he gets the chance in a flat, monotone voice that's a little too loud, not pausing to explain why it's interesting, ask you what you think, or give you a chance to comment.

When you start looking bored, then flicking your eyes around looking for an escape route, he doesn't seem to notice. When you make up some excuse and try to leave, he follows, still telling you about rare Amazonian butterflies. When you finally get angry and yell, "I'm not interested in what you're saying, I'm tired of you following me around, and I just wish you would go away!" he looks up at you with wide, hurt eyes like a kicked puppy, and maybe says something like, "why didn't you tell me?" Needless to say, he never makes small talk. When he grows up, if he finds a job aligned with his interests, he resembles Sheldon Cooper from The Big Bang Theory.

And, because of the unsympathetic outsider's tone the NIH uses, you'd be forgiven for thinking that. But that's not the only person you could picture, and it's not what I picture.

I picture a gifted kid, like the one I wrote about in an earlier entry about gay suicide and prejudice. She is bespectacled, yes, but decently groomed. She wears clean, appropriate clothing, and has clearly showered, washed her face, and brushed her hair. Dinosaurs are her special interest, and she spends all her spare time reading about them and going on online discussion groups to talk to paleontologists and other dinosaur fans. She has her own theories about how dinosaurs should be classified and why they should be classified that way. She runs up to you, excited to tell you something she just learned about dinosaurs: it turns out that, as she has long suspected, the famous comet didn't kill the dinosaurs after all. Like the first boy, her voice is a little too loud, but far from flat and monotone, it is breathless from excitement. Her words spill out just slowly enough to hear and she gestures animatedly, looking into your face and trying to convey the enthusiasm she feels.

Unfortunately, like many people, you don't really care what killed the dinosaurs. She notices you looking away, stops midsentence, and pauses for a moment, as if trying to think of something to say. Then she asks you a question, or lets you change the subject. But it's clear she really wants to talk about dinosaurs, and she keeps trying to bring the conversation back to them. Though she tries to pay attention to the topics you raise, her eyes keep glazing over. If you tell her you're not interested in dinosaurs, she'll look at you, hurt. If she were older and more self-aware, she might say, "look, you're my friend. You tell me about America's Next Top Model and I'm not interested, but I listen to you because it's important to you. Well, dinosaurs are important to me. Why won't you listen to me? Aren't I your friend, too?"

Incidentally, this girl happens to have an IQ over 130, and thus could be considered a "gifted child." Regardless of their level of social skills, gifted kids usually have "obsessive interest in a single object or topic to the exclusion of any other." They "want to know everything about their topic of interest," and will "gather enormous amounts of factual information about their favorite subject and will talk incessantly about it." In fact, this desire might be the driving force that makes them gifted.

Because their interests are so important to them, "their conversations with others will" often "be about little else." Many are noticed and tested for giftedness in the first place because their "expertise, high level vocabulary, and formal speech patterns make them seem like little professors." As social beings (like most NTs), "they may approach other people," but because other children lack their interests, intellectual maturity, vocabulary, or passion, they may find no common ground, and "normal conversation" may be "impossible."

Gifted children have no difficulty socializing with people at their intellectual level (adults and older children), showing that at least at a basic level, they possess normal social skills and a normal desire to engage with others. But to kids their own age, their behavior seems "inappropriate or eccentric." In my opinion, this shows more about the limited capacities of typically developing children than it does about the gifted child--in fact, research typically finds gifted children to be more empathetic, more socially perceptive, and far more concerned than typical children about injustice, whether it be another child being bullied on the playground or human rights issues in other countries.

So, obsessive interests can provide the driving force behind the development of talent. They can also lead to social problems, not because of a social deficit in the obsessive person, but because of the intellectual limitations of his listeners.

Here's another way to look at the situation. Indie music fans tend to scorn fans of pop music like Britney Spears, and vice versa. Indie music fans see Britney Spears fans as undiscerning victims of the herd mentality, while Britney Spears fans view indie music fans as snobs. Imagine you were the only Britney Spears fan in a world of indie music fans. Everyone else thinks she's a trashy sellout. Whenever you talk about listening to her music or going to see her concerts, people roll their eyes, make cutting remarks, or try to get away from you. What you do next depends on how much you value Britney Spears. If Britney is just a lukewarm interest, one of many, you can simply talk about other things instead and enjoy her music in private. But what if Britney (as silly as this sounds) were the animating passion of your life?

Imagine the passion that Olympic athletes put into their sport, or Nobel Prize winners put into their research. Now imagine that's how you feel about Britney Spears. Now imagine not being allowed to talk about her, because no one's interested.

What does it feel like to have unusual interests that are so passionate you are bursting to think and talk about them, to the exclusion of all else? I can't speak for every passionately obsessive person (I hope others will comment), but here's what I experience.

When I think about one of my obsessions, I feel like a totally different person. I feel alert, excited, so energized I feel like I could think about it forever, without stopping. My mind races, asking questions, forming hypotheses, coming up with experiments to try, sorting through observations of myself and other people for relevant examples. Ideas keep bubbling up, and while observing them, I find some creative and interesting. I can feel my understanding of my obsession growing deeper and more complex. I am as happy as if I've just discovered the meaning of life. Food, water, and sleep become irrelevant--indeed, I sometimes get so engrossed in reading or talking to people about my interests that I forget to eat. No matter how tired, sluggish, or demotivated I felt before, I now feel as if someone had switched on the reward center in my brain. I feel as if I just drank ten cups of coffee and my whole skin is vibrating with energy, but instead of diffusing worthlessly everywhere, all that energy has narrowed to a point behind my eyes so I can use it. I feel like jumping around, skipping, and singing.

Not only do I want to know everything about it, but I want to bounce my ideas off someone else to learn what they think about it. Most of all, I want to share all this excitement with someone else. First, it makes the experience more real and meaningful, as all experiences become when shared. Second, I want to give someone else a taste of the ecstasy I'm experiencing.

Other people see my eyes sparkle, my gestures become animated, my smile become deep and genuine and my whole being become more present. When I talk, I can barely contain my enthusiasm so I gesture broadly and talk fast, smiling like I'm doing what I love most in life.

This is how I've felt when engaged with one of my passions, ever since I was five years old and obsessed with the Oz books. It is one of the best experiences I've ever had, and certainly the most all-consuming*. If you've felt it yourself, you'll recognize what I'm talking about. If you haven't, it might be impossible to understand. I suspect most people lack this sort of deep, emotional-intellectual-energetic connection to something that possesses their whole being, so the behavior of a gifted child or a child with ASD seems inexplicable. Peers and even adults don't see the emotional message, the eagerness to share one's joys. Neither do they see the elaborate structure these children use to structure their knowledge. So when obsessed kids try to share their passions, others might just hear a litany of "unrelated" facts.

To me, a friend is someone I trust enough to be myself in their company, someone with whom I can share my joys and sorrows (and who can share theirs with me). My greatest joys are to find out about something that fascinates me, and to share that joy of discovery with someone else. These are the drives that push me to, as the NIH (uncharitably) puts it, "talk incessantly" about my intellectual passions. The instinct to share yourself with another person is a fundamentally social instinct, so how ironic that children are perceived as having no social understanding when they try to reach out and connect with someone else.

How would you feel if, no matter how hard you looked, you couldn't find someone with whom you could share your deepest joys and sorrows, someone with whom you could be yourself? Imagine if someone asked you, "how was your day?" and you couldn't tell them about the fascinating thing you just learned, even though it made your day? Imagine that, if you ever wanted to talk about something you care about, you'd be forced into one-sized conversations, because the other person would drop out and leave you talking to yourself? Imagine that you couldn't be yourself around your friends, because they can't or won't understand. Meanwhile, well-meaning adults keep telling you that conversation is about connecting with other people, and even though your peers reject your attempts at connection, the adults tell you the problem is with you. They tell you you have a neurological disorder, and if you complain that the label doesn't fit, you're told (in that condescending manner of people who diagnose learning disabilities) that you're in denial and there's a word for it: "anosagnosia."

What does it mean that who you are, and what motivates you, is so different from everyone else? Should you be "normalized," rid of those troublesome "special interests" once and for all? Would a gray, boring life without authentic connection be a worthwhile price for "normalcy?"

NTs with normal IQ can be themselves around other people, because they all like roughly the same things, and they all draw from a common pop-cultural base (though they may differ in their opinions of various segments of it). Gifted children don't have that luxury. "Normal social skills" are for people whose personalities and fundamental motivations allow them to be normal.

Obsessive interests do not preclude a lack of social skills. But one can be a social genius and still come off as "Aspie-like" sometimes because of a passion for things most people don't care about. That social genius must go towards papering over the mismatch between one's own nature and one's peers', not to mention one's own knowledge that the gulf may be too wide for a true connection to ever develop.

Obsessing passionately over things, even unusual ones, is not inherently pathological. But as long as the DSM, the NIH, and many autism researchers leave out their benefits, and the inner experience associated with them, they will be stigmatized, and well-meaning people may pathologize children unnecessarily.

*Given the extreme pleasure and deep satisfaction that comes from pursuing obsessions, it's not surprisingly, some people with autism experience their obsessions as almost like addictions.

...

In Part 2, I will discuss the evidence that many clinicians and researchers not only leave out the inner experience and positive effects of obsessions, but exaggerate and perhaps even invent negative effects. I may also provide a link to thoughtful blog entries by parents who saw the value in their children's obsessions. As usual, parents are way ahead of the research and diagnostic community.

Currently Pondering...

2010-10-27T05:09:00.004-05:00

1. There is a double association between the skills that high-IQ people with nonverbal learning disabilities do well and the skills that low-IQ savants can do. On the one hand are explicit skills that are either fundamentally verbal, or symbolic and easily verbalizable (like the skills learned in an English class or explicit deductive reasoning, for instance). On the other hand are implicit musical, artistic, spatial, time perception, arithmetic calculation, calendar calculation, or size estimation skills.

Why this division? Why do some skills go together and not others? Why is it that among gifted students who took the SAT, almost all were strongly skewed in favor of either verbal or math, and very few were equally good at both? There has to be a brain basis for why some of these skills go together, but not others, and why these tendencies to math-spatial or verbal skills tend to appear at an early age.

2. The key has got to be in the parietal lobe, at least regarding the nonverbal functions. Spatial, attentional, time-related, magnitude, size estimation, mental rotation, and such skills have all been associated with the parietal lobe, often with great overlaps in the regions activated (Sound familiar? These are pretty similar skills to the ones where savants excel). In general, similar types of computation tend to be performed near each other, so these various nonverbal functions should overlap in space because of some overlap in function.

3. What is that functional overlap, though? What exactly are all these component processes in the parietal lobe that so much resemble savant skills/nonverbal learning disability deficits, and what computations do they all have in common? Why are they all centered in the parietal lobe? Do they tend to be wiped out together in cases of brain damage because they're all next to each other, because they're functionally related in a network, or both? (Presumably both, as functionally similar areas tend to be located near each other, but it's not a given).

4. What makes some people develop strengths in nonverbal parietal-centered abilities and others develop weaknesses? (One would probably have to do a longitudinal study where people with nonverbal learning disability are matched with typical people on verbal IQ, and savants are matched with typical people on nonverbal IQ, and all three are compared both behaviorally and with neuroimaging).

5. It's pretty clear that to understand nonverbal strengths and weaknesses, we need to look to the parietal lobe. But what about verbal abilities (the language network seems to be distributed all over the brain, with short-range connections diminishing and long-range connections increasing over development)? There may be parietal involvement here too, as a parietal region is involved with integrating phonology and orthography, and the parietal lobe is considered part of a network relevant for (explicit) intelligence of the sort measured on IQ tests (the P-FIT model). My guess is verbal abilities are probably more distributed in location than nonverbal ones, and explicit IQ even more so, but why should that be? And again, what would that say about the relationship between verbal and nonverbal ability, and why they so often trade off?

Not an easy set of questions to answer, as the parietal lobe is full of areas that activate for many different kinds of tasks, with very subtle differences between coordinates and lots of room for differences of interpretation. One really needs to compare across experiments to understand what's going on, but that requires comparing not only hard to visualize coordinates (in different numbering systems), but also procedures and statistical thresholds...not to mention, taking into account the overall task-related network in which each activated region appears...in short, information overload. So, in spite of finding, and starting to work my way through, a bunch of fascinating papers on the parietal lobe and its functions, I haven't made much progress on thinking through these questions.

Also, these questions (and the reading I would need to do to address them) have only the most tangential relationship to my homework, which I should really be doing instead...

Books I want to read on break

2010-10-19T10:03:00.003-05:00

Books to finish:
The Brain that Changes itself-Dr. Norman Doidge
A User's Guide to the Brain: Perception, Attention, & the 4 Theaters of the Brain-John Ratey
Notes from Underground-Dostoevsky
Thinking in Pictures-Temple Grandin
20/20 Is Not Enough-Seiderman and Marcus

Books to read:
The Man Who Mistook His Wife for a Hat-Oliver Sacks
A Mind at a Time-Mel Levine
The Construction of Reality in the Child-Jean Piaget
Extraordinary People-Dr. Darold Treffert
Mellow Out, They Say. If Only I Could-Michael Piechowski
Nobody Nowhere-Donna Williams
Godel Escher Bach-Douglas Hofstadter

Books to reread:
Gifted Grownups-Strezniewski
Flow-Mihaly Csikszentmihalyi

Bullying: We're all responsible; we can all do something

2010-10-07T17:29:00.001-05:00

I am deeply saddened, frustrated, and angry that so many gay teenagers have been bullied so harshly, and for so long, that they feel they have no choice but to kill themselves. I'm not surprised.

So many of us otherwise nice, everyday people who would never bully a gay teenager ourselves have, lurking not so far under the surface, a deep-seated need to squash difference as soon as they see it. Never mind whether that difference might be good (a child performing several years above grade level), bad (a child who can't keep his temper and hits the other kids in his class), or neutral (a child who is gay). The attitude comes out in perfectly nice adults, and children who are not so nice pick it up, and are bound to bully anyone different. Unfortunately, in this culture, gays are an easy and "acceptable" target, but the same bullies attack people who are different in all sorts of other ways. As long as we either promote or condone fear or hatred of people who are different, we create an environment in which people will be bullied.

You might not think this applies to anyone you know. After all, you are most likely a tolerant, upper-class liberal sort, who would never dream of looking down on anyone for their race, sex, sexual orientation, religion, country of origin, economic status, etc. You haven't looked down on someone for dressing and talking like a "goth" or a "prep" since high school. You might even champion "diversity" at times. Well, let me tell you a story.

***

The preschool teacher came up to Jane with a worried look on your face. "Your daughter is so charming," she said, "But she's just too different. She writes her whole name on all her pictures, and worse, she insists on signing her pictures as 'Buttercup' when everyone knows that's not her real name. She reads whole books. Whenever she reads about the planets, she calls herself the earth and me the sun and starts dancing around me. She actually says she believes in fairies. You need to do something about her or she'll be miserable in kindergarten. The other kids will make fun of her."

Note the tacit acceptance of the other students' behavior. The teacher felt a deep sense of urgency--but not about teaching children not to torment others who are different. Apparently, the real crime is not to be a bully, but to be a target.

Jane's daughter did not seem like the sort of child who anyone would dislike. Dainty, dimpled, and anachronistically wearing dresses, bows, and patent leather shoes, she looked like she'd just stepped out of a doll catalogue. Only rarely was she seen without a smile, and she skipped everywhere. She greeted everyone around her fearlessly, including total strangers, hoping to strike up a conversation. And of course there was that high-pitched little child's voice using words that were bigger than she was, and pronouncing them perfectly. When she danced, as she did at the slightest opportunity, she would go into almost a trance, where people would comment on the grace and beauty of her movements and ask where she took lessons. (Her mother was amused, as she was always too busy dancing to pay attention in ballet class, and besides, she couldn't tell her left from her right). In short: imagine the living incarnation of the song "I Hope You'll Dance" and all it represents, in the body of a four year old.

To be fair, Jane's child was guilty of more than just being academically advanced, imaginative, emotionally engaged in everything she did, and full of zest for life. Her teachers were also concerned that she couldn't throw or catch a ball and that when she cut things out, she always turned the scissors instead of the paper. That emotional involvement could be a problem when she got so attached to her drawings that she wouldn't let anyone touch them or throw them out. In one particularly amusing episode, she was so deeply involved with pretending to be a hen laying her eggs that when some other kids grabbed the eggs out from under her to play with in the toy kitchen, she argued with them and then started crying as if her own babies had really been taken away. She would occasionally run into the street at that age because the lamp posts, which looked like the scary black dinosaurs in Fantasia, seemed scarier than the cars driving by. Anyone who has spent any time with a quirky kid knows that the same traits that make them cute, charming, lovable, and occasionally awe-inspiring also make them maddening sometimes. There is nothing wrong with insisting that a child like this learn how to cut with scissors, or stay calm when someone interrupts her fantasy world, or sit down and listen during a lesson instead of dancing around acting out the lesson. The problem is when the teacher then goes on to say: "There is something wrong with who your child is. Your child needs to change. Someone will bully your child. And rather than tolerate your child, we will tolerate the bullies."

Kids absorb messages from their teachers, without them ever being verbalized explicitly. Think about the messages this child's putative kindergarten classmates were getting. Could some of these kids have grown up to bully some poor gay kid to death? Or make some other, closeted gay kid live in fear that someone would find out who he really was?

And while this child was too young to absorb the attitudes towards her, what happens a few years later when she starts realizing her teacher and her classmates want her to be someone different from who she is? Best case scenario, she doesn't think or feel that there's anything wrong with her. She likes how she thinks and feels and behaves, and her parents do too, and support her. Now she faces a major existential conflict between herself and the people with whom she spends a majority of her day. School feels like an exhausting war zone. She learns to put up a front of not caring what other people think of her and take refuge in being "the smart kid," but still, years of nasty words, or worse, being treated as if she were invisible, still leave scars. Long after it all ends and people treat her as just another person, she still expects to be rejected.

Now imagine that you aren't sure that you're okay, and if your parents knew who you really were, they wouldn't think you were okay, either. So you have no one to turn to (or believe as much), and you feel utterly alone. No one supports you, not even yourself. You are abused or ignored. You know that no one in authority cares; after all, they tacitly support the bullies. In fact, you're pretty sure the teachers and authorities hate you, too. All of that before we even get to the cultural images that call you a wimp, and worse.

Did that hit you like a punch to the stomach? Now imagine you're a gay teenager and you get to experience that wonderful feeling 24 hours a day, 7 days a week, 365 days a year. For four long years of high school, and then...who knows?

I hope the recent suicides inspire you, as they do me, to create an environment that truly welcomes people who are different. Those of us who would never bully anyone ourselves have tremendous social power, which we can use to embrace gay people and others who are different, and "boycott" those who mistreat them. Let's use that power. Not out of pity, but because given a chance, they're amazing people and our lives would be so much emptier and duller without them.

Currently Pondering...

2010-10-05T17:01:00.001-05:00

A function called "spatial attention" is really important. The reason we have a unified perception of an object instead of seeing a bunch of disjointed color, shape, and other features is because we bind them together by directing "spatial attention" to a particular location. When spatial attention is compromised after damage to the parietal lobe, people can develop Balint's syndrome, an inability to notice more than one object at a time. This can make it difficult or impossible for them to take care of themselves or engage with other people or changes in their environment. Other types of parietal lobe damage can lead patients to neglect one whole side of space. It's not that half their visual field has been cut off--moving their heads doesn't do anything, and they neglect one side of whole objects, too. Rather, it's as if their spatial attention finds it difficult or impossible to move to that side of space. And on a more mundane level, poor performance on laboratory spatial attention tasks has been associated with ADHD and is probably also involved in Nonverbal Learning Disability.

But "spatial attention" is an odd hybrid concept of "attention" and "spatial perception," each of which have their own distinctive properties and are measured and understood very differently. Thus, it's hard to understand what spatial attention really means, and why it matters so much.

Attention is more like working memory: it's a limitation on the amount of information that can be held and worked with at a time. Attention, in some theories, IS the set of all information in conscious awareness. Limitations on attention, then, are quantitative limitations. The modality (verbal vs. visual) of attention may affect the nature of these quantitative limitations (e.g. a different limit might replace the famous, verbally-derived 7 + or - 2), but in essence, attention is best defined by the quantitative limits it puts on cognition.

Spatial perception, on the other hand, is a set of several maps or grids that we build by input from several different senses (hearing, sight, balance, proprioception), and multiple sources of information within the same sense (e.g. to compute depth from a 2D retinal image, we use some combination of stereoscopic, structure from motion, shading, texture, shadow, size, and perspective cues). We know there are several grids because space can be represented with reference to one's own body (egocentrically), with reference to particular objects, or with reference to cardinal directions (e.g., N/S/E/W). A problem with spatial perception seems like a difficulty representing space in one of these ways, or integrating these processes together to form a coherent mental map. These are fundamentally qualitative problems with cognition.

The question I'm asking is this: when spatial attention goes wrong, is the root cause a problem with attention or a problem with spatial representations? Or both? If both, do attention problems and spatial representation problems lead to different difficulties with spatial attention? And what kind of experiments can one use to answer these questions?

New theory on human reasoning: We evolved to argue, not to be right

2010-08-07T10:38:00.004-05:00

The argument of this Newsweek article on why we reason badly seems pretty stupid. It posits that we commit logical fallacies because they make us sound more convincing to other people. (Note that it never explains why we would find an illogical argument more persuasive in the first place. Which, if you think about it, is the same question in a different guise. So, instead of explaining why humans are illogical, the article actually defers the question while pretending to answer it).

Let's grant that a fallacious argument makes us sound more convincing when we argue with other people (I agree that it often does). Why would we have evolved to argue with each other? Even assuming that speech evolved long enough ago that we would evolve other abilities in response to having it, what reason do we have to privilege arguing as so important to survival? (IMO, this is the fallacy of assuming that because something is the case now, it must have been in the distant past).

I think it's more likely that we evolved to reason roughly and inaccurately without looking for counterexamples because that's what's necessary to act in a world that changes quickly and unpredictably. (Think about how many people would be crushed in avalanches or eaten by saber-toothed tigers while sitting around trying to think up a counterexample).

OK, so people with ASD lack social skills. But what ARE social skills?

2010-03-22T13:30:00.003-05:00

As you may have noticed, I don't feel entirely comfortable with theories about ASD based solely or mainly on social skills explanations. It's not that I think people with ASD don't socialize differently, or that it doesn't cause problems for them or for others. To me, social differences are the most obvious signs of possible ASD: it's really easy to spot a person who makes poor eye contact, enjoys monologuing without asking people questions about themselves or following up on what they say, or periodically interjects quotes from TV shows or books that have nothing to do with the ongoing conversation. It's more that, especially at higher levels, it's not clear how to define "social skills" so we can research them or teach them to others.

Are social skills a species of hypothesis-testing ("social cognition") as many psychologists seem to think, or are they something intuitive and unconscious? If they involve processing information unconsciously, what sort of information do people use to make these sorts of social assessments? How do we deal with the fact that social skills are necessarily situated in a cultural or subcultural context? A crude example would be a gesture that means something different in two different countries, but many books have been written about expressive and interpretational differences between WASPs and Jews in America, or between men and women within the same culture. Is there some broad set of social skills that exists across culture, gender, age, ethnicity, and personality? Or should we define social skills as the ability to adapt to any new social "culture" within which one comes into contact? If we do (which I think we should), how would we test such flexibility or determine whether a person suspected of ASD lacks it?

Finally--and tied to the preceding point about culture--is there a normative aspect to social skills? i.e., suppose there are two people, Abby and Mitchell, who are both equally good at interpreting others' behavior and projecting the sort of thoughts and emotions that they intend. Abby hates conflict, while Mitchell enjoys argument and debate (they energize him). When Abby and Mitchell get into disagreement with others, Abby will tend to behave in ways that avoid conflict and improve the relationships of the people involved, even if it means her own concerns may not be addressed and her frustration continues. Mitchell will seek out argument when it might be more productive to pick his battles. Both of these approaches have their strengths and weaknesses, but how does one determine which is the more "socially skilled" response? If "social skills" are judged by the ability to make people comfortable and have harmonious relationships, Abby will seem more socially skilled. If "social skills" are judged by the ability to achieve one's goals, then either one may seem more socially skilled, depending on whether Abby succeeds in avoiding conflict and Mitchell succeeds in not antagonizing important people in his life. Personally, I think true "social skills" are not normative, but the normative aspect necessarily comes in for parents and teachers when they try to teach a child with ASD how to behave towards others, and is often overlooked.

My biggest misgiving, however, is that a lot of evidence suggests that neurotypicals (NTs), the supposedly "socially skilled" group, really don't have particularly great "mind-reading" abilities. That is, their interpretations of others' thoughts and feelings, and the reasons for their behavior, are usually wrong. For instance, we have a systematic bias to see ourselves in more detail than others see us, and others in less detail than they see themselves. This may affect the attributions we make in explaining others' behavior. And consider the following, from this article:

Strangers (who are videotaped and later report their second-by-second thoughts and feelings, as well as their assessments of their counterpart's thoughts and feelings) read each other with an average accuracy rate of 20 percent. Close friends and married couples nudge that up to 35 percent. And "almost no one ever scores higher than 60 percent," reports psychologist William Ickes, the father of empathic accuracy, who is based at the University of Texas at Arlington.

Furthermore, "past research has shown, for example, that people often do little better than chance when it comes to accurately identifying those who find them attractive, intelligent, or likeable."

Research on the mind-reading abilities of NTs consistently finds that they are biased because they have an egocentric perspective. And yet, most of the time, the average NT manages to make friends, find and keep a romantic partner, get through a job interview well enough to get a job, and get along with coworkers well enough to keep a job. I don't think this is because any but the most perceptive NTs have a particular knack for understanding others' thoughts or feelings, either on an intuitive or an intellectual level. Like people with ASD, they are stuck in their own heads all the time. The difference is that the majority of people think, feel, and express themselves similarly enough that they can guess accurately--at least, up to 35% of the time, which apparently is good enough. When they meet NTs of other genders, personalities, cultures, or nationalities, they stumble a bit, but after all, "it's a small world after all," the fundamental neurology is largely similar, so after some false starts, most can learn to "translate" from one social language to the other.

What makes people with ASD--at least, the "higher functioning ones"--different from NTs is that, from basic sensory processing on up, their brains don't work the same way. They feel the same emotions in different situations and use different body language to express them. They find very different things interesting or motivating. The differences are real, and so vast that a person with ASD may see himself, and be seen by NTs, as being from another planet. Conversation depends on common ground and there is very little common ground. The difference may be great enough that, without any difference in either social skills or egocentric perspective, people with ASD cannot learn to translate.

The evidence for this view is that NTs are often no better at understanding people with ASD than people with ASD are at understanding NTs. If NTs were really better at translating from one very different "social language" to another, that would not be the case.

I know, the idea that NTs have as big a stumbling block as people with ASD in their mutual interactions is probably shocking and seemingly unlikely, especially if you yourself are NT. But consider the autistic blogger ballastexistenz's description of what she, and NT members of the MIT Media Lab, observed when they watched the "Autism Every Day" video:

instead of watching it straight through, we stopped it and focused on the social behavior of the children in the video, and the parents in the video. The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings. We concluded that somehow through the camera person focusing on the mothers, combined with the mothers focusing on the camera people, the viewer’s focus was not on the social overtures of the children, who were then possible to describe as not engaging in social overtures even when they were very clearly affectionate, social, and concerned with their parents’ feelings.
So again, how do we measure innate level of social skill in this context? This is a context where autistic people’s parents are somehow (possibly by training from doctors, possibly through instinctively looking for a different set of social cues than the ones we use, possibly because of some other construction they have in their heads that overrides what’s in front of them) clearly not noticing our social approaches or our concern for them.

Ballastexistenz points out that the sort of overtures NT parents expect from their children are a sensory nightmare for children with ASD. Eye contact is often uncomfortable and overwhelming, making it hard to think. As this blogger puts it, "Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations. To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up." This may sound melodramatic if you've never experienced it, but many first-hand reports by people with ASD experience similar discomfort (for instance, see here and here).

Lastly, if people with ASD were truly "mind-blind," they would not even be able to understand one another because they would, like children who fail to pass the false belief test, assume everyone else had exactly the same knowledge they did, whether autistic or NT. But, at least according to self-report, they can have comfortable, rewarding interactions with other people with ASD. Same principle as NT-to-NT socializing: we understand those who are like us, with whom we share common ground.

Given both the extreme sensory differences of people with ASD and the rather profound lack of social skills shown by the supposedly normative NTs, theories of autism based primarily on social symptoms are misleading.

What botox tells us about embodied cognition and ASD

2010-03-19T14:47:00.003-05:00

Some of you may be familiar with the theory that mirror neurons may underlie our understanding of others' emotions. The evidence for this theory also supports the theory of embodied cognition, which states that many features of what we think of as higher-level cognition actually stem from aspects our ability to act and to sense the movement of our bodies. Mirror neurons fire both when a person performs an action (e.g., reaching for an object) and when he or she sees someone else perform the same action. They are also highly active in situations where people have to imagine others' mental states . This evidence suggests that a large part of understanding others comes from the ability to simulate oneself doing what another person would do. Our brains literally put us "in someone else's shoes." Not surprisingly, research on autism has often investigated the mirror neuron system.

It is not intuitively obvious that mind-reading should be grounded in the same system that represents states that are not fundamentally mental, such as reaching for an object. In fact, some philosophers have supported the idea that instead, mind reading is instead based on a commonsense theory, akin to a scientific theory.1 That imagined action is such a fundamental part of mind-reading, when it need not be, suggests that mind-reading is another function based on embodied cognition.

An intriguing study on users of Botox presents further evidence that embodied cognition underpins mind-reading. Botox smooths out frown lines, making it harder to convey anger and other negative emotions. In keeping with a long-standing finding that smiling actually makes one feel happier and scowling actually makes one feel angrier, researchers wanted to figure out whether Botox users actually were happier.

However, the study was designed in such a way that it actually measured not one's personal mood, but one's ability to imagine how someone would feel in a particular situation. Forty volunteers participated in the study twice: before and after they got a Botox injection. Each time, they read statements describing situations that typically make someone feel angry ("the pushy telemarketer won't let you return to your dinner"), sad ("you open your e-mail inbox on your birthday to find no new e-mails") or happy ("the water park is refreshing on the hot summer day"). After reading each sentence, they pushed a button to indicate that they understood it.

If mind-reading is a theoretical process, there would be no reason to expect a before-after difference in how quickly people respond. If, however, mind-reading is a process of embodied simulation, then reducing participants' ability to express anger and sadness should reduce their ability to simulate these emotions, which in turn should reduce their ability to understand situations involving them. There should be no change in response to happiness, because Botox does not interfere with expressing it.

In fact, the post-Botox volunteers pressed the "I've read and understood this" button just as quickly, but took longer to read and understand the sentences involving anger and sadness. As the Newsweek article puts it, "the emotions just did not compute as easily as before their sadness and anger muscles were paralyzed." This study adds to a large amount of data supporting the theory of embodied cognition in all sorts of seemingly abstract cognitive processes.

The researcher's adviser, UW Madison professor emeritus of psychology Arthur Glenberg, discussed further implications of the study. The Botoxed patients took less than a second longer to understand statements of angry and sad situations than before, but this is more than enough to affect social interaction: "In conversation, people respond to fast, subtle cues about each other's understanding, intention, and empathy. If you are slightly slower reacting as I tell you about something that made me really angry, that could signal to me that you did not pick up my message."

What are the implications for autistic spectrum disorders?
I have sometimes entertained the idea that somatosensory perception might be different in some people with autistic spectrum disorders than for other people. Lack of accurate information about their own bodies may make it harder to see how they look from the outside, which may affect both their understanding of others' reactions and their understanding of themselves (since we rely in large part on information from others in order to develop beliefs about our strengths, weaknesses, and other qualities). If this theory turns out to be true, then Aspergers could be viewed as the condition of approaching life top-down because one cannot approach it from a fully embodied perspective.

Gwen McKay has a more interesting, and less intuitive, theory about the implications of the Botox study for how we should help children on the spectrum. In SHIFT, he writes:

Like the Botox patients, many autistic children placed in behavioral therapy programs have been prevented from engaging in physical movements that their brains associate with specific emotions. Autistic individuals may, for example, rock back and forth when they are anxious or flap their hands when they are happy and excited. Behavioral programs often focus on suppressing these autistic traits because they are socially stigmatized, without considering whether they serve any useful neurological functions such as processing the associated emotions and their expression in language.

Although the results of the Botox study do not conclusively establish that suppressing body movements associated with emotion can impair the cognitive functioning of autistic people, we should, at the very least, be aware of the potential risk. Because many autistic mannerisms such as hand-flapping are completely harmless, they would be better dealt with by ending the stigma and improving society’s acceptance of neurological differences. It makes no sense to put the mental and emotional health of our autistic children at risk just to teach conformity to narrow, prejudiced expectations.

Seems like a good idea to me.2

----
1 If this were actually true, one would expect people with Aspergers to be the social geniuses of the species, as they are highly intelligent, theory-driven, and known for coming up with theories of human behavior to replace a lack of intuitive understanding.
2 However, the stigma may be difficult to overcome because a lot of stimming gestures--intermittent sounds, head-banging, flapping, rocking, stomping, etc.--can be intrinsically distracting, even for people who understand and are tolerant of autism. (I plead guilty here).

Counterpoint: What responsibilities do we have to the autistic community?

2010-01-18T20:54:00.003-06:00

In her blog Raising Complicated Kids, Accidental Expert tells a heartrending story so many families have experienced. I personally have known people who went through the same experience, and more than anything else, it inspires me to become a researcher.

When I ask all those professionals what it does look like, no one has an answer. They only scratch their heads. Again.

Right now, all I know is, we have a child who exhibits extreme moodiness, is irritable at best, and gets severely stuck on the most benign issues. The other night a two hour meltdown ensued after she was asked to clear the table before she began a painting project.

What I've come to realize is that all those so-called experts are just as confused as we are. ...Why just until a few years ago, the medical profession didn't think Bipolar could manifest until later teen years. As for Asperger's, it wasn't even a diagnosis until the mid '90s.

There is little research available. These are kids after all. ...Why the more I see, the more I firmly believe that many of the interventions, the medications, and even the diagnoses themselves, are educated guesses at best. Life is complicated. Its rarely linear. And, as I look at my house in all its glory, it is certainly not neat. So why the preoccupation with fitting our children into pretty little boxes?

The more I look at these "pretty little boxes"--ADHD, NLD, SPD (and its subdisorder APD), ASD--the more I think very few people actually fit into them. All these disorders share symptoms--primarily attentional, sensory processing, and motor/praxis problems. In a sense, the same child could be any or all of these things. On the other hand, many people are like Accidental Expert's children: they don't fit in any of the boxes. They have attention and executive problems that don't fit classic ADHD; they have the praxis and sensory problems of NLD without the rigidity or problems with abstract thinking; they have the social problems of ASD while showing uncanny empathy and insight into others, when they have the chance to think about it. They don't seem to have any defined disorder. And yet, they may feel unable to cope with certain classes, with completing homework or chores, with daily living tasks, or with social relationships.

There is nothing like the frustration of a person who knows there is something wrong with him, but can't find an answer to the question: "what is it?" Or a person who is handed a box which doesn't really fit, then handed another box, then another, then another. And left to wonder whether all this time and money spent on consulting "experts" left her better or worse off than when she started.

Labels are supposed to carve nature at its joints. The current labels are all wrong because they don't do that. They're a rough collection of behavioral symptoms, the equivalent of "Headache Disorder" or "Stuffy Nose Syndrome." I want to do research that changes this. I want to ask the hard questions about how attention, sensory processing, and more complex cognition develop and interact with each other. I want to understand how these functions go wrong. I want to understand what symptoms actually go together, and why. Most of all, I want to ensure that no one ever has to go hunting through Label Land ever again.

Accidental Expert drew a very different conclusion than I did:

In the end I believe the answers won't come from the doctors, the scientists, but from us the parents. We're on the front lines. We live this every day and love our children for who they are and not the labels they possess.

So, as I step down from my soap box tonight, the only advice I can leave for others is to trust your instincts. Don't be afraid to fight for what you think is right or against what you know in your heart is wrong. After all, accidental or not, we are the experts.

Well, of course she's right that parents know more about their child than anyone else, and it's up to them to fight for their children. I've known several twice exceptional (gifted and learning disabled) people. Those whose parents didn't fight the endless labeling, drugged them, and left them to fend for themselves in an inappropriate educational environment struggled with depression and academic stagnation in high school and college. Those whose parents fought for them every step of the way, by obtaining appropriate diagnoses, rejecting inappropriate ones, and using educational alternatives when needed, struggled along the way but ended up successful.

Yet I don't think parents can come up with consistent, effective drugs and therapy for their child. Asking them to do so would be like asking parents to come up with cures for depression on their own. We need scientists and researchers. It saddens me to see Accidental Expert turn her back on the medical profession and on research, and ask others to do the same.

It's understandable why she does this; researchers and clinicians haven't lived up to their responsibility to the autistic community. Researchers in particular: clinicians wouldn't be scratching their heads in response to Accidental Expert's kids if they had decent categories to work with. Our responsibility is not to come up with theories about neurotypicals or to investigate a curiosity of nature. Our responsibility is to create a science of the development of individual differences that ensures that no child will ever be bombarded by ill-fitting labels ever again. When we live up to our responsibilities, I hope people like Accidental Expert will regain their faith in doctors and scientists.

Point: What relationship should researchers have with the autistic community?

2010-01-18T15:55:00.003-06:00

One of the most important questions psychology researchers can ask themselves is: "what role should the experience of my subjects play in my research? What responsibility do we have to the subjects we study, in choosing our research topics and in reporting them?" Scientists are often suspicious of "anecdotal" evidence and subjects' self-reports, since after all, subjects aren't scientists and can't see into the workings of their own minds. Yet if we fail to take into account their perceptions of their own condition, we risk doing research that is useless and unhelpful to the very people we hope some day to serve.

In her Psychology Today blog, Lynne Soraya found herself frustrated with a recent Kennedy Krieger Institute study that showed that children with autistic spectrum disorders often have poor handwriting. As she pointed out, adults with ASD and parents of autistic kids have made the same observation for years.

She responds:

There is a world of autistic people out there eager to share their experiences with the world. To understand why they have synesthesia, or prosopagnosia. Why they they have trouble with speech. Why they struggle to make friends and have jobs. Why life sometimes feels so hard...

The information is out there...but it seems they are just not listening. While the media and experts are patting themselves on the back over "discovering" a new bit of information about autism, there are kids out there struggling. There are adults like me, frustrated. Wanting to learn about why we are the way we are - but left out in the cold.

Autism should not be a researcher's "pet project." Autistic people should not be used as a pawn to prove someone's theory about how "normal people" see and interpret the world. And, it might be worthwhile, every now and again, to ask a person on the spectrum before pronouncing opinions, or posting speculations about us -- how we think, or why we do things. Some of us do speak...and we can tell you.

We might just have a perspective that you might not have thought of...and we are the ones who have to live with the results if you're wrong. If you want to know what research matters, ask a person with autism. Ask a parent. Ask a professional that works with us every day. Ask someone who knows. We'll tell you.

There are two problems with this argument. First, it suggests that only research that autistic people and parents of autistic children can understand is worth carrying out. Unfortunately, basic science must sometimes proceed applicable results. In medicine, many boring experiments with animals, neurotransmitters, and chemical compounds must be done before useful drugs can be developed. Many of these studies have incomprehensible titles based on the interaction between very specific chemical compounds. Patients might look at the titles and say, "so what?" Yet without such highly specific and technical studies, drugs could not be developed.

Similarly, we need to know what autism is neurologically as well as behaviorally before we can come up with tests for it, develop drugs for it, or develop targeted therapeutic measures. Different causes of autism imply a need for different methods of diagnosis and treatment.

If autism is caused by several auditory and visual processing problems leading to dyspraxia and inability to perceive many social cues, then clinicians should emphasize sensory processing tests and therapy should focus on training perception (followed by helping the patient brush up on the social and motor skills they missed).

If autism is fundamentally an information-processing disorder caused by overly profuse and faulty connections or inability of the brainstem to regulate sensory input and attention, identification might require fMRI connectivity scans and therapy might train attention.

If autism is fundamentally a problem with the emotional and face processing systems, including the amygdala, prefrontal cortex, and fusiform face area, autism can be diagnosed by eye-tracking studies (i.e., do they look at the face and eyes normally?) and fMRI activation. Therapy might focus on developing face-reading, emotional perception, and emotional intelligence.

If a chemical imbalance causes autism as it seems to in depression and anxiety, drugs might be a promising treatment. If specific genes cause autism, then targeting the specific genes might make more sense. Other possible causes might have still other implications for diagnosis and treatment of autism.

Right now, we don't have a science; clinicians do what seems to work, but many of them don't really seem to know what they're doing and why they're doing it. They may have theories, but these theories amount to either pseudoscience verging on mysticism or "it works in all these (anecdotal) cases, therefore let's apply it." That's not good enough. Before we can develop appropriate diagnoses and treatment for autism, with a real scientific basis, we have to understand how autism works and how it develops. And many of these studies will be highly technical, focus on arcane brain areas or cognitive functions, and seem irrelevant to most laypeople.

Autistic people know better than anyone else what it is like to have autism. They know what it feels like and how it impacts their lives. That does not mean that their theories about the causes of autism are correct. Autistic people do not have any more insight into the workings of their brains than the rest of us have, and countless psychology studies indicate that we do not understand or predict our own behavior very well.

Just because your symptoms improve when you have a fever or stop eating gluten does not mean that an immune system defect or a gluten allergy necessarily caused your autism (although it's possible). Maybe it helps treat the symptoms but has nothing to do with the cause. Maybe it's a complete coincidence. Autistic people often have sensory processing difficulties. Does this cause their autism? Maybe, but what about the equally vocal group of autistic people who swear they don't have any sensory processing problems? Are they just not aware of how they compare to normal people, or are they correct about themselves? And would co-occurence really imply causation? Maybe, maybe not. That's what scientific studies are for.

This is not to say that we should ignore what autistic people say about themselves, or what parents say about their autistic kids. What autism feels like is as much a characteristic of this condition as the more observable traits on a standardized autism test. If we don't know what autism feels like, we don't really understand the disorder. Thus, self-reports should be a source of hypotheses for researchers. If many autistic people say they have certain sensory processing problems, researchers should test for those. (They may or may not find a causal link, of course).

Lynne Soraya is right that we have a responsibility to listen to autistic people and parents of autistic kids, and do research that will eventually lead to helping them. However, that does not mean that they will always be right.

What the CDC Report Actually Says

2009-12-20T09:00:00.004-06:00

The CDC just issued a press release saying that the average rate of ASD among 8-year-olds increased by nearly 60% between 2002 and 2006, such that almost 1% of 8 year olds have an ASD. The anti-vaccine community's response has been predictable. A post on my twitter page says "Can Neurodiversity ideology survive latest #autism rising CDC facts?"

This CDC study is important. But most of the conclusions being drawn from it are either overblown or erroneous. Nothing in the CDC study itself supports the claims of the anti-vaccine community.

Some background...
According to the CDC, data was collected in 2006 from 11 states (Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina, and Wisconsin). The 2006 data was compared to data from 2002 from all of the above states except Florida.

Children were identified through "screening and abstraction" of existing health and education records from health-care or education facilities. For the purposes of this study, to have an ASD, children's records had to "document behaviors consistent with the DSM-IV-TR criteria for autistic disorder, prevasive developmental disorder-not otherwise specified (PDD-NOS), or Asperger disorder." An "evaluation record" was defined as "the documented record of an assessment conducted by a community professional to determine the need for special education services or the presence of a developmental disorder. The assessments could be conducted at any time in the child's life through age 8 years." These could be conducted by a professional with special training in developmental disabilities, such as a developmental pediatrician, child psychiatrist, pediatric neurologist, clinical or developmental psychologist, or speech/language pathologist. The CDC says such an evaluation must be made showing behaviors consistent with an ASD, but does NOT seem to specifically state that these professionals must actually diagnose the child with an ASD.

Indeed, the key evaluations were made by a team of doctors, psychologists, and speech/language pathologists assembled by the CDC, not by the professionals who had actually evaluated the child. All the documents about the children in the study were sent to this team. They used a coding guide based on the DSM-IV-TR to determine whether the evaluations suggested either autism, Asperger's, or PDD-NOS.

What can we conclude from this?
1. Only 10 states are fully represented, with a beginning and end point. These states may or may not be representative of autism rates for the nation as a whole.
2. Skewed downwards? One of the states with high reported rates and many resources for helping kids with ASD, California, was not included, which may have shifted rates downwards.
3. ...Or skewed upwards? Notice that children did not have to actually be diagnosed by professionals as having an ASD. Their records merely had to show "behavior consistent with" an ASD diagnosis, according to the DSM-IV. Since ASD is a spectrum and many neurotypical people have ASD-like traits, the CDC might have reported higher rates than actually exists. This is NOT a trivial problem.
4. Skewed upwards? We are at a large remove from the children themselves. Consider that there are many overlapping symptoms between ASDs, sensory processing disorders (SPD), ADD, nonverbal learning disability (NVLD), and gifted children. Much sensitivity is required to determine what certain behavioral symptoms indicate, as we've discussed. Good clinicians say that the first step is to rule out other possible disorders. The CDC's professionals haven't done this. They didn't check for other possible disorders that might better explain the child's symptoms, they checked only for an ASD. This is understandable, since the researchers had to process large amounts of data, but it could lead to inaccurate diagnoses that overestimate the rates of ASD.
5. The years being compared are 2002 and 2006. On the one hand, these years are very close together, so a dramatic jump in the number of diagnoses would be noteworthy. On the other hand, even the earlier measure occured since thimerosal was removed from vaccines, iirc. Also, not enough time would have passed for major environmental or lifestyle changes to have swept through the US population.
6. No information about causes was collected. This was not an experiment, with manipulations and control groups. It was a purely demographic measure. Therefore, this study does not tell us whether better diagnostic practice, environmental or dietary changes, or assortative mating between ASD people might have caused the results. Statements from researchers are just that--statements of opinion. They are not evidence of anything.

Armed with this information, let's consider what the researchers found.

In Age of Autism, David Kirby writes:

According to the latest CDC figures, the ASD rate at 11 sites among 8-year-olds in 2002 (kids born in 1994) was 60-per-10,000, and 94 per-10,000 in 2006 - among kids born just four years later, in 1998. Some of this increase was explained by better access to school records and other factors, the CDC said, though it added that a "true increase" could not be ruled out.

Note the CDC's statement. The study does not investigate causes. Therefore, it can't rule out anything. The fact that we can't disprove a "true increase" in autism rates does not mean we have an epidemic on our hands. We probably can't disprove that you just killed someone yesterday--should we believe that you did?

Comparisons between different racial and ethnic groups also do not support the anti-vaccine movement's claims that we have an environmentally caused epidemic. David Kirby writes:

Another surprise was the difference between some of the racial and ethnic categories. In 2006, the rate among non-Hispanic white children was 102-per-10,000, but among black children it was 76-per-10,000, a 34-percent difference, and among Hispanic children it was 61-per-10,000, a difference of 67 percent. Inexplicably, the rate among Hispanics in Alabama actually plummeted during the period in question, by 68%, from an already low 19-per-10,000 in 2002 to an almost rare 6-per-10,000 in 2006. Meanwhile, with the exception of Arizona, the CDC said, "prevalence among Hispanic children did not change significantly within any of the other 10 sites.”

Black and Hispanic kids are more likely to be economically disadvantaged. They are more likely to confront broken homes, crime, and other situations that may disrupt their social and emotional development. They receive less support and enrichment inside and out of school. Cheap urban housing, and urban life in general, likely exposes kids to toxins, so you would think black and Hispanic kids would have more exposure to environmental toxins and thus higher rates of autism. The facts don't support that.

The majority of the Kirby article consists of quotes from Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the federal government's Interagency Autism Coordinating Committee (IACC). This man is tasked with recommending funding priorities for autism research and services. Some representative quotes here:

He added that he never saw a single case of autism during his training in the mid-1980s, including a full year's rotation in child psychology. "I wanted to see children with autism. I couldn't find them," he said. "Now I wouldn't have to go any further than the block where I live to see kids with autism today."

"Yes," Insel said. "I don't think anybody is arguing that it is 100-percent genetic. And I don't think in those terms, exactly, that it's either genetic or it's environmental. From my perspective, it's almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?"

Insel said, "It's quite believable to me that there are many children who develop autism in the context of having severe gut pathology, of having autoimmune problems, of having lots of other problems. And some of these kids really do recover. And that is quite different from the autism that was originally described in the 1940s and 50s - where it looks like you have it and you are going to have it for the rest of your life."

Notice that none of these are drawn from the actual results of the study. They are just his opinion. The fact that he is director of NIMH and chair of the IACC does not make his opinion anything more than an opinion. Nowhere does he actually cite any studies. His evidence is his own experience. Experience is okay for formulating hypotheses about individual children, but not so great for population-based causal studies or for determining funding priorities.

Furthermore, I believe that David Kirby is either accidentally or wilfully misunderstanding Dr. Insel and taking his remarks out of context. First, note that "environmental factors" doesn't necessarily mean things like exposure to mercury. If we're talking nature vs. nurture, the way the brain develops always depends on an interaction between genes and the environment--including the social interactions and school experiences one has. Neurodiversity advocates would not disagree with this interpretation of Dr. Insel. Second, he says, "I think that we're approaching autism as if it is a single thing, as if it is a syndrome that will have one cause, one treatment"--an approach with which he disagrees. I would consider myself a moderate believer in neurodiversity, and this entire blog is devoted to the idea that there are multiple "autisms." The "neurodiversity advocates" who supposedly believe that only genetics cause autism and who are supposedly hurt by the CDC study are straw men.

Finally, let's look at the most important and widely quoted fact: the prevalence rates themselves.

The average rate for all 10 of these states is a little less than one percent. I would bet you more than one percent of kids in the US have the flu right now, and we're not worrying about a flu epidemic. For comparison, a reputable researcher, Shaywitz, estimates that between 5 and 15 percent of the US population has a reading disorder. Is anyone frantic about an epidemic of reading disorders? No, but the affected percentage of the population is five to fifteen times higher. The frenzy over the so-called "autism epidemic" combined with indifference to reading disability is caused by the same reasoning errors that lead us to fear airplanes but not cars, even though the death rates for driving are much higher.

In other words: the CDC study is not evidence for some sort of vaccine/environmental toxin-caused epidemic. Rather than panic, let's continue to research the nature and causes of ASDs.

Public perceptions of giftedness, part 2: Prodigy

2009-12-19T16:26:00.002-06:00

We continue a discussion of common views of giftedness held, implicitly or explicitly, by many people. This entry will focus on giftedness viewed as prodigy. The next will examine giftedness viewed as talent.

Giftedness as Prodigy
A child prodigy is a person who exhibits adult-level achievement in some area from early childhood. The prototypical geniuses are Mozart and Gauss.

On the surface, prodigies seem a lot like geniuses, but several important differences exist. If giftedness is prodigy, then only those who seem brilliant from an early age are gifted. Thus, counterintuitively, Albert Einstein was not a genius. After all, he talked late and seemed retarded to his teachers. Neither was Thomas Edison, whose only obvious childhood gift was a gift for trouble. Furthermore, not every child prodigy becomes a genius as an adult.

If giftedness is prodigy, a child's giftedness should be obvious to all. Who can miss a child reading at the age of two or speaking in complete sentences while their peers are still saying “mama” and “dada?” Who could overlook a six year old composing concertos or inventing ingenious ways to add up all the numbers between 1 and 100? A prodigy is impossible to miss; thus, so is a gifted child.

Obviously, only a child can be a child prodigy. Thus, people who at least associate giftedness with prodigy overlook adolescent and adult giftedness. Until recently, gifted adults were overlooked. There were almost no books, support groups, or classes for gifted adults the way there were for gifted children. It was as if everyone assumed that giftedness was a second skin that one shed at some point during the teenage years. It didn't seem obvious then that gifted children become gifted adults--perhaps because, if giftedness is prodigy, then children really do grow out of giftedness.

The process for identifying gifted children is largely based on the idea that giftedness is prodigy: it looks for early and precocious achievement, assumes that a child's giftedness will be obvious to teachers or parents, and overlooks adolescent and adult giftedness.

Most gifted people are identified in school, based on standardized intelligence and achievement tests, grades, observations by teachers, observations by parents, creativity tests, portfolios, and interviews. All of these methods discover children who achieve beyond age level from an early age, but they probably could not spot a “late bloomer” like Einstein or Thomas Edison.

Presently, only very precocious kids will likely be identified as gifted. Observations made by teachers usually play a key role in identifying gifted children. Teachers have many children to pay attention to, and many classroom responsibilities besides examining children for giftedness. A child who is not obviously precocious may not attract attention. Furthermore, in many classrooms, children actually participate very little in class. Unless a child routinely gives unusually precocious responses to a teacher's questions, she will have very little opportunity to demonstrate her abilities. In some schools, parents can suggest that their children be tested for giftedness. Studies have shown that when parents identify their child as gifted, they are almost invariably correct. However, that does not mean that parents will recognize their child’s giftedness. In a family unfamiliar with the idea of giftedness, a child will only be recognized if she is so obviously precocious as to attract attention wherever he goes.

These methods are rarely if ever used to identify adolescents or adults. In middle school and high school, gifted programs may still exist, but fewer people are identified as gifted. Colleges and universities don’t screen for giftedness.

A system couldn't select for prodigies better if it were designed to do so.

***
Prodigy looks miraculous not because of the level of ability itself, but because of the difference between the ability level and the child's age. The older the child gets, the smaller the age difference and the less remarkable the ability appears. Thus, although the child's abilities do not diminish, his or her prodigy does, disappearing by adolescence.

It's hard to look past a prodigy's seemingly impossible abilities. Other, more normal traits seem to fade into the background. As a result, perfectly well-meaning people see a child prodigy primarily as a prodigy. They end up valuing a child for his abilities. If everyone around a child sees him primarily as a prodigy, the child himself may identify mainly as one. When the prodigy inevitably disappears, the gifted person faces a painful loss of identity. (Gifted children do not have to have Mozart-like, adult-level talents to experience this loss. A merely precocious child may experience the same thing).

How prodigies react to this situation depends in part on how they feel about their area of talent. Prodigies who do things because they think they're good at them will stop doing them when their prodigy wanes, so they do not become geniuses. Often, they lead ordinary lives. Sometimes, they become mentally ill and even commit suicide. Prodigies who engage in their area of talent because they love it are more likely to continue when they stop being prodigies. They may become geniuses. Furthermore, they may suffer less from the shock of losing their prodigy, because they have invested their identities more in interest in a subject than talent in a subect. That leaves them something to fall back on when they can no longer be prodigies.

The "gift of dyslexia": how it might work (but why it might not be the whole story)

2009-12-09T16:43:00.003-06:00

I've read, in the Eide Neurolearning Blog and elsewhere, that dyslexic kids tend to have very good visual-spatial abilities. I never really understood the connection. I just treated it as part of the more general observation that cognitive styles can be roughly divided into the verbally gifted but spatially-backward Harvard types and the spatially gifted but verbally backward MIT types. It turns out, though, that the mechanism that causes mirror reading and writing might be the very one that makes them so visual-spatially gifted: their ability to mentally rotate an object.

When we think of mental rotation, we usually think of an engineer visualizing some sort of machine--a car, say--and turning it to look at it from the front, back, up, down, left, right. I think people like me, who are bad at mental rotation, tend to think of it as transformation of one distinct thing (the object from one side) into something that looks very different (the object from another side). I think someone good at mental rotation sees it differently. Instead of having multiple representations that they transform into each other, they likely have a representation for the invariant structure of the object that might give them cues for what they'll see when they turn it. Their repesentation of the car is the car's invariant structure, and it calls up different views depending on how they want to turn it.

This system works great for 3D objects. But what happens when skilled mental rotators confront the wonderful world of print? While a spoon is a spoon no matter how you turn it, a b becomes a d or a p becomes a q. Yet these letters have the same basic structure: a half-circle with the open side connected to a line. b differs from d and p differs from q only in the rotation of the half-circle about the line. b and d differ from p and q only in whether the semi-circle is at the top or the bottom of the line. So it's not surprising that skilled mental rotators would mirror-reverse letters during reading or writing, or that their visual-conceptual problem with letters might cascade into problems matching graphemes to phonemes. In other words--it's easy to see how dyslexic kids' strengths might create their weaknesses.

Here's how the Eides illustrate this idea:

"I remember being surprised when our then young son brooded over how to write the letter "f"... he said, "f, f, f,... oh that's right, it's a flipped over 'j' with a line through it." Huh? I hadn't even thought about the relationship between the letter 'f' and 'j' before that. To this day both he and Brock are able to read words backwards more quickly than me."

This, they suggest, is what kids with dyslexia do all the time.

So, have we explained dyslexia? Can all the dyslexia researchers pack their bags, go home, and congratulate themselves on a job well done? Probably not. This is almost certainly only one of several paths that lead to the behavioral symptoms known as dyslexia. Each article I've read on the subject takes it as a given that dyslexia is fundamentally a problem with poor grapheme (letter) to phoneme (sound) matching caused by poor "phonological awareness" and more basic auditory processing problems. A lot of studies seem to show that dyslexics don't process either speech or non-speech sounds exactly the way typically developing kids do.

So, do different causes of dyslexia imply mutually exclusive subgroups (i.e., different developmental disorders cause "dyslexia")? Or do a child's strengths (mental rotation) and weaknesses (auditory processing, phonological awareness) interact to produce a tradeoff between spatial and verbal ability? All I know is, we need more research.

Public perceptions of giftedness, part 1: Genius

2009-12-04T15:42:00.003-06:00

Everyone has a different idea of what giftedness means, from parents to teachers to well-meaning neighbors to advocates for the gifted to gifted people themselves. Ask ten people in the same room what they think giftedness is, and you will probably get eleven opinions. Carol Fertig, a knowledgeable blogger at Prufrock press, writes, "When asked the question, 'What does it mean to be gifted?' my standard answer is, 'I have no idea.'" For better or worse, though, we all have a mental image--however fuzzy--of a gifted person in action. And how we define giftedness, to ourselves and to others, has a huge impact on how we see ourselves (if we're gifted), our children, or our students. And while Carol Fertig can successfully advocate for gifted people without a personal definition of giftedness, most of us--especially gifted teenagers trying to figure out their identities or parents trying to plead their case to skeptical public school administrators--do not have that luxury.

While researchers and experts on giftedness have their own dueling conceptions of giftedness, most of us are more likely to encounter laypeople's ideas about the gifted. Like most widely accepted ideas in the culture, these are fuzzy and mixed together, but one can separate them out into three basic strands: giftedness as genius, giftedness as prodigy, and giftedness as talent. Gifted people as well as those who have never met a gifted person seem to share similar images. In all likelihood, your view of giftedness draws on one or more of the archetypes described below.

This entry will focus on giftedness as genius. The next will examine giftedness as prodigy.

Giftedness as Genius
When advocates for the gifted talk about the need to support our "next Einsteins," they implicitly draw on this conception of giftedness. A genius is someone whose achievements transform some area of the culture in a lasting way. For instance, Shakespeare wrote what are still considered the best plays in the English language, expanding the bounds of both literature and language. Darwin's theory of natural selection laid the foundation for the modern understanding of evolution and transformed our understanding of human nature.

With the possible exception of Mozart or Gauss, no child has ever fit this definition of genius. A genius is something one becomes when one grows up.

Most people who view giftedness as genius also believe that genius is some sort of innate ability. From here they split into two camps. Many people seem to assume that, since genius triumphs over adversity, children need no help to develop it. This attitude may explain some people's hostility toward enrichment programs for gifted children. Gifted advocates, on the other hand, claim that children need emotional support and opportunities to develop their abilities in order to become geniuses. Of course, most children identified as gifted do not grow up to be geniuses. Advocates for the gifted argue that this happens because gifted kids lack the support and opportunities that they need. Since gifted kids clearly are getting very little support, this explanation seems reasonable.

Most people who view giftedness as genius also feel that genius is a quality of the individual and the work he or she produces. Most people don't create anything lasting; surely there must be something special about those who can. We tend to look at geniuses as a class apart, almost superhuman, regarding them with a mixture of awe and envy. We take perverse pleasure in pulling them off the pedestals we ourselves put them on. Why else would there be a small cottage industry of diagnosing long-dead geniuses with mental illness? We love to hear about geniuses' mental or physical disabilities because these disorders seem to "compensate" for the advantages nature gave them. If geniuses can do so much that we can't, then fairness demands that there must also be things we can do that they can't. That's why we always imagine Einstein as an old, wild-haired man sticking his tongue out--his eccentricity makes up for his brilliance.

Many of the myths about gifted people are really just age-old, unexamined myths about geniuses. For example:

Gifted people can succeed without help.
Gifted people are antisocial. (This one comes from the tendency of geniuses to lock themselves away while doing their creative work, or perhaps from their prickly, anti-authority personalities).
Gifted people must have some counterbalancing flaw--eccentricity, mental illness, lack of social skills, lack of athletic ability, odd appearance, etc. If a gifted child is smart and an early reader, he must be a nerdy loner who sits alone on the playground everyday reading because he can't make friends. (Note that this myth can prevent gifted people with a learning disability from being identified. Their weaknesses are viewed not as signs of disability, but as just the flip side of being a genius).

When we identify children as potential geniuses, something of our attitude towards the adult genius often rubs off on them. We communicate that their gifts set them apart, but that they shouldn't get a swelled head. We tell them they should value and develop their gifts, but that their gifts belong not to them but to society. Finally, we communicate that we love them for their gifts, but resent them for the same abilities. When children receive such mixed messages about their talents, is it any wonder that as teenagers and adults, they often deny that they have any special gifts at all?1

Some gifted children have actually been identified as a future Mozart or a modern messiah, often by complete strangers and at a very young age. They may think something like, "I don't feel like a Mozart or a messiah. Maybe I'm not. But I'm supposed to be, so I have to live up to that expectation. I hope no one realizes I'm not what I'm supposed to be." They feel an incredible pressure and at the same time, a suspicion that they are not really as good as everyone says they are. This suspicion may shade into a fear that if people knew who the "genius" really was, they wouldn't like him or her any more--especially if such children believe they are only valued for their gifts. An older person might be able to verbalize these misgivings and prevent strangers' remarks from skewing his or her self-concept, but a small child likely lacks the self-awareness and emotional intelligence to do so. While the same dynamic can be seen most obviously with children hailed as geniuses in the media, it also occurs with precocious children a mere six to ten years above grade level in their strongest area.

If geniuses are somehow a different sort of person than the rest of us, it stands to reason that what they do is natural, and easy, for them. Thus, we expect gifted children to earn top grades and create impressive products with ease. Gifted children often expect never to have to work hard, and never have to, until suddenly in middle school or high school they are expected to show organizational ability as well as brilliance. Then, suddenly, they "hit the wall" and stop turning in impressive work. The child capable of creating her own proofs gets a first B or C in math because of calculation errors. The child who imagines vivid stories of high adventure fails a writing assignment because he cannot transfer his complex ideas to paper. If the gifted child has a learning disability, he or she will hit the wall harder and more painfully, but most gifted children are assumed to hit the wall sooner or later. Is it any wonder that gifted people come to assume that they're imposters, not really as smart and successful as everyone says they are? (More about this in Part Two).

Part of the problem is that we misunderstand genius. It's understandable, but false, to assume that special qualities absent from the rest of us make someone a genius. After all, Van Gogh, unrecognized during his lifetime, is now considered a genius. Did Van Gogh suddenly become more brilliant after he died?

In fact, genius is as much a matter of a culture's needs at any given moment as of the qualities of the individual and his or her work2. The individual and the culture interact to produce a genius. First the culture determines what opportunities are available for children to discover and develop their talents. However well-adapted to science Einstein's neurological profile might have been, he would not have gravitated to theoretical physics had he grown up in Borneo. Next, a culture determines who counts as a genius by selecting whose new ideas to absorb. A culture can only absorb so much new input at a time without falling into total chaos, and there will always be more talented creators than a culture can accomodate. Those who succeed often do so because they were in the right place at the right time, saying or doing the right things.

That is not to say that one needs only luck to be a genius. Mozart may have needed access to an instrument and an audience in order to be recognized as a genius, but that doesn't mean everyone given an instrument and an audience will become Mozart. Talent, imagination, and persistence are ncessary, though not sufficient, qualities. One must not only be in the right place at the right time with the right skills, but recognize that fact and know how to act on it.

As a result, many talented children will not grow up to be geniuses. If genius is located as much in the culture as the individual, giftedness cannot equal future genius, regardless of the educational opportunities promising children receive.

If we (implicitly or explicitly) adopt the view that giftedness is genius, what does that imply for our child? If "gifted" means "future genius," you can take for granted that your child will produce a paradigm-shifting discovery or invention as an adult. However, she will not be able to take credit for it because her achievement is taken for granted. After all, as a gifted person, he's destined to change the culture in some lasting way. But if for some reason your child fails to change the world, even if she achieves more ordinary measures of success, she won't be able to appreciate the accomplishments she does have. Should one appreciate a waste of ability? What would count as success for anyone else looks like a failure for someone who could have been a genius.

Research suggests that to become a genius, your child must find a passion by his teenage years and devote himself to it above all other interests and relationships. She must devote her youth to developing all the skills needed for her masterpiece. The timing couldn't be worse: while still trying to figure out who he is, your child must also find the path to his destiny and start walking it. But how does she know what her destined contribution will be? Not surprisingly, your child may end up obsessing over whether he's developing the right skills and talents, or whether he might somehow, unknowingly, be jeopardizing his future. That's what happens when you carry such a burden of expectations. You bear all the responsibility if you fail, but take none of the credit if you succeed. If your child becomes a genius, he's only doing what he's destined to do. But if she fails, she's jeopardized her own future.

In Part Two, we will discuss the next image of the gifted person in popular culture: the prodigy. Stay tuned!

1 The technical name for this denial of one's talents is "imposter's syndrome." See also The Gifted Adult, by Mary-Elaine Jacobsen, which was written to convince her many gifted psychotherapy clients that they were not hopelessly deficient, but gifted.
2 For a more detailed discussion, see Creativity by Mihaly Csikszentmihalyi.

Slow visual attention shifting in autism: could it explain social & behavioral symptoms?

2009-11-30T19:07:00.004-06:00

It's common knowledge that kids with ASD don't like to look people in the eye, and tend not to follow others' gaze. A lot of researchers1 have assumed that kids with ASD have a specific face processing deficit and try to trace it back to the brain, particularly the fusiform face area (a part of the network for visual object recognition that is particularly active for most people when recognizing faces). But what if a more general visual processing problem causes them to have trouble following gazes--along with some of the other visual and motor differences seen in autism?

A study by Eric Courchesne illustrates the sort of visual processing problems found in autism. Subjects had to look at a computer screen containing two empty square boxes, with an X between them. Subjects were told to focus on the X and to press a button as soon as they saw that a light had been turned on in one of the boxes. Autistic patients took much longer to register the light than normal subjects. These results suggest that people with autism are slower to notice and react to new visual stimuli.

John Ratey, who describes this study in his book "A User's Guide to the Brain," thinks that problems with the cerebellum might explain autistic people's problems with visual attention. The cerebellum does not just coordinate smooth movements and balance. It also seems to help us put our attention where we want it to be without having to think about it. Intriguingly, in Courchesne's study, patients with damage to the cerebellum, like autistic patients, took much longer to register the light than did normal subjects.

Such problems placing visual attention can lead to problems with reading faces, seeing wholes rather than parts, and gaze following. Eric Courchesne found that while a typically developing baby can shift its attention from the parent's nose to an eye or to the mouth in a fraction of a second, an autistic baby may need as many as five to six seconds to make such a shift.2 If it takes a child five or six seconds to shift his gaze from his mother's nose to her eyes, it will be difficult for him to form a coherent image of his mother's face. He will, instead, store it as a bunch of face-pieces. Thus, face recognition may be impaired--as has been observed in some studies.

The length of time required for autistic people to shift their gaze may also explain why they tend to focus on parts of an object rather than the whole. (Or as Tim Page, a man with Asperger's, put it, "not only did I not see the forest for the trees, I was so intensely distracted that I missed the trees for the species of lichen on their bark.") One can only take in a small amount of information--a part of an object--without moving one's visual attention.

If all one sees is parts, one's concepts may also be highly part-driven and analytical rather than holistic (since we typically abstract concepts based on what we see). Perhaps autistic people's constant need to make some sort of larger sense out of tiny pieces of percepts and concepts explains their tendency to systematize?

It's easy to understand why slow gaze shifts might impair face reading. Facial expressions are holistic, involving most facial features, and they shift very quickly--much faster than an autistic person can move his or her gaze. Thus, even with the utmost attention and care, most of the information in emotional expressions will simply pass an autistic person by. As John Ratey puts it: "Social information, the look on a mother's face...is fleeting; it happens in a moment and is gone. The autistic baby, locked into whatever stimulus has captured his gaze, cannot move his eyes up to his mother's face quickly enough. If the baby is staring at a puppy and the mother smiles, he will miss her smile. By the time he can attend to her face, her expression has changed."

It's not surprising that slow gaze shifts would impair autistic's gaze following abilities. Suppose a mother says to her autistic baby, "look at the dog." A typically developing baby would notice that his mother just spoke, look at her face, notice that she is looking towards the dog, and look at the dog, too, all within a second or two. An autistic baby will look at her mother's mouth, since after all the sound came from there, and a few seconds later will look at her mother's eyes. By then her mother might no longer be looking at the dog but at the child, frustrated that her child didn't immediately respond by following her gaze as expected. Or, when the baby turns to look at her mother, she will see only her mother's ear, because her mother has already turned to look at the dog. Either way, the baby and her mother have not shared joint attention. Not surprisingly, autistic toddlers are unlikely to ask their mothers to look at something they are, since as far as they are concerned, such behavior has never been modeled for them. Unfortunately, gaze following is a vital milestone for social understanding. It teaches young children to recognize, and seek out, common ground--the awareness that you and another person are looking at, and referring to, the same thing. The knowledge that you and another person are looking at the same thing are sometimes thought to be the foundation for more complex understandings of other's knowledge that develop later. More advanced "theory of mind" might not develop in some people with ASD without the foundation laid by gaze following in infancy (or so such prominent researchers as Simon Baron-Cohen and Uta Frith believe).

This slow gaze shifting theory might even help explain autistic people's visual strengths. To compensate for slow gaze shifting, autistic people might become highly skilled at visual search. After all, if large amounts of information are passing you by while you try to shift your gaze, it pays to minimize the time needed for search and maximize the accuracy. If you don't look to the right place the first time, shifting focus again will put you even further behind. Indeed, as predicted, autistic people are unusually good at visual search.

Unable to shift their gaze quickly enough to process a whole, autistic people see a world of pieces. You can imagine how strange and confusing a world of small pieces must seem. For example, if a baby pulls a puppy's tail, "he will miss his mother's frown. Her 'No!' and his tail-pulling will not form a coherent whole in his memory. They are separate pieces of reality, disparate fragments in a life that does not add up."3 People will seem to be yelling at him all the time, for no reason. No wonder autistic people engage in self-soothing behavior to calm down ("stimming"), or develop obsessive routines to make sense of the world and assert some control over it. No wonder some autistic people are so overwhelmed that they go into fight or flight mode and fly into rages where they seem to lose all self-control.

In short, if at least some people with autism have abnormalities in the cerebellum that make them take longer to shift their visual attention, it could explain the variety of social and perceptual symptoms they experience.

---
1 i.e., the following:
D. Hubl, MD, S. Bolte, PhD, S. Feineis-Matthews, H. Lanfermann, MD, A. Federspiel, PhD, W. Strik, MD, F. Poustka, MD and T. Dierks, MD (2003). Functional imbalance of visual pathways indicates alternative face processing strategies in autism. Neurology, 61: 1232-1237

Kim Dalton, Brendon M Nacewicz, Tom Johnstone, Hillary S Schaefer, Morton Ann Gernsbacher, H H Goldsmith, Andrew L Alexander, and Richard J Davidson (2005). Gaze fixation and the neural circuitry of face processing in autism. Nature Neuroscience, 8:4 519-526

Geraldine Dawson, Sara Jane Webb, and James McPartland (2005). Understanding the nature of face processing impairment in autism: Insights from behavioral and electrophysiological studies. Developmental Neuropsychology, 27(3): 403-424. Can be found here

2 Some of you will ask: but don't we all constantly make minute movements of our eyes in order to "refresh" our visual image, since we literally cease to see things if they don't change? I don't think the Courchesne study refers to this sort of movement, which barely shifts the focus of gaze, if at all. Presumably, an autistic baby's eyes still randomly wobble a bit from central fixation, as with the rest of us. Unlike the rest of us, they are slow to make purposeful, attention-driven gaze shifts.

3 John Ratey, A User's Guide to the Brain

Throwing out the baby with the bathwater: The dangers of turning against "learning styles"

2009-11-25T14:53:00.005-06:00

The pendulum always swings back in the other direction. When I was in high school, the fad for multiple intelligence and learning styles was at its peak. Today, we're seeing rumblings in the media that there are "no such thing as learning styles." Is there anything behind either position than just the same old pendulum of opinion, swinging away?

Self-disclosure: it is intuitively obvious to me that not everyone learns the same way. I know from experience that I understand what I learn better, and remember it better, when I'm given a big-picture "this is what we're learning it, why we're learning it, and how it relates to what we've already learned" blurb up front, before I have to learn the minutiae of how to do it. My theory is that the big-picture gives me a meaningful label that I can use to store the information and transfer it. This style seems to work for things like writing essays that make broad and unexpected connections (most recently, using the TRACE model of language learning as an example of the sort of processing that might occur in particularly low-IQ people with savant syndrome). Yet I've noticed that many of my classmates, or the people who work in my lab, seem to prefer very much the opposite. I seem to retain information the best when I can write it down, regardless of how it is presented in the first place. Not everyone I've spoken to seems to benefit from this, and a lot of people have more specific preferences in how material is presented than I do. My eyes glaze over, my brain shuts down, and I fall asleep when I read a textbook, yet my father loves them so much he collects them. I could go on for hours, and I'm sure you could, too.

It's equally obvious that we mean a lot of things by "learning style." It's a vague term, and we all have different examples. We have people who need the big picture first vs. people who need to deduce the picture from the small picture. We have people who benefit from different modalities of presentation. There are people who benefit from different methods of rehearsal, a separate issue than the original presentation. (A person with amusia--lack of ability to perceive music as anything other than noise--might be an "auditory learner," but setting material to music won't help him remember it). There are people who like to have information presented to them and people who like to jump right in and ask questions or do some hands-on project relating to it. There are people who think in a more linear way and people who think in a more associative way. We mean all these things--and more--when we talk about "learning styles." It's a confused mess.

I realized that the craze for multiple intelligences/learning styles was producing a confused mess back in high school. At that point, the term "learning styles" was used to mean a combination of three concepts: the modality through which students best take in information, the modality of the best techniques for them to study and remember it and/or the modality of the person's imagery; and the modality of the output in which they will be most successful. I.e., "auditory learners" are supposed to take in information best through listening, learn best when they use aural strategies to memorize, and perhaps learn well through discussion or answering in-class questions. What unifies this conception is the idea of sensory modality. This is a bit more coherent than "learning styles" can sometimes be, but there's a lot of vagueness here. For instance, what about visual learners who absorb information best through pictures vs. those who absorb more through print? What about "spatial" learners who think in terms of spatial relationships--these are abstractions drawn from a number of senses including auditory, visual, and kinesthetic, so does it make sense to lump them in with the visual learners? And why would the modality of the initial input have anything to do with the ideal modality for processing and output? And why would students fit into only one "learning style," anyway? To their credit, a lot of learning styles advocates, such as the Eides, were asking exactly these questions. They discussed learning styles in the broader sense, too, but their approach was always to break down the complexity (see this and this). And it was their discussion of these issues, and the complexity behind these seemingly simple categories, that got me interested in studying neuroscience.

But the Eides might be the exception to the rule, and even they don't draw fine distinctions as well as I would like. So, given all of this vagueness, when you see this quote from Professor Frank Coffield, you might think he has a point:

"Next time you see a learning styles questionnaire, burn it [we] produced two reports for the now defunct Learning and Skills Development Agency, which got cold feet and refused to launch them. It was afraid, as one of the government's "delivery partners", to back research it had itself funded, in case it upset the DfES.

Our reports reviewed, systematically, 13 models of learning styles and concluded that this area of research is theoretically incoherent and conceptually confused. I listed in the reports 30 dichotomies, such as "activists" versus "reflectors", "globalists" versus "analysts", and "left brainers" versus "right brainers". We should stop using these terms. There's no scientific justification for them.

We do students a serious disservice by implying they have only one learning style, rather than a flexible repertoire from which to choose, depending on the context."

(The article I linked to links to the full report and a more manageable summary).

It's true that current models of learning styles are based on confused concepts without a lot of theoretical justification (even though there is plenty of educational research on the one hand and sensory processing and cognitive research on the other that could provide a good basis for such a theory). And Frank's last point is particularly thought-provoking: what happens when we believe, and tell our kids, that they have only one learning style, and it's set in stone?

I define intelligence as the ability to solve the problems one encounters--either academic or "real-world"--appropriately (i.e., in a way that gets you closer to your goals, assuming that you aren't self-destructive). Even in academic domains, the set of problems carved out by each discipline requires a different set of questions to ask about the material, and different criteria for a correct answer. When you take into account the real world, too, the number of productive thinking tools out there must be countless. It follows that an intelligent person is one who has the ability to learn and apply a lot of different thinking strategies (whether they actually choose to apply them, of course, is another matter). Everyone has a few natural ways their brain is predisposed to reason, but smarter people can break out of that and learn new ways. A not-so-intelligent person has only a hammer, and treats everything as a nail. An intelligent person has a whole toolbox. A learning disability is kind of like selective "stupidity" in a certain area: it makes your thinking inflexible and prevents you from learning thinking tools in a certain area. You might immediately think about the rigidity of autism. But a dyspraxic person also just doesn't build the knowledge structure everyone else does about how things work; her mind just won't go in that direction.

The goal should be to broaden students' learning styles so they can solve whatever unpredictable problems they'll need to in the future. Does that mean we should forget about learning styles? Well...no. For better or worse, students' brains entering school are the way they are. There are certain ways of learning that are effortless for them and others that don't seem to help no amount of effort the child expends. Any good teacher would tell you you have to meet the child where he or she is. If you know a child takes in information really well through print and pictures, is mediocre at auditory, and couldn't learn by doing if he did it for a year, that tells the teacher where to focus his or her attention. First, to maintain his great visual skills, the teacher should provide some opportunities for visual learning. For a large portion of the time, she should focus on developing auditory learning rather than kinesthetic, because that's where the greatest return for her effort will be. Later on, his kinesthetic abilities might have matured to the point where she can start targeting them as well.

So, yeah, anti learning styles people have a point that learning styles advocates are leaving all this out. But you know what? All these complaints are perfectly compatible with the observations we've all made that...everyone learns differently! It's a huge stretch to say that because of all these issues with learning style theory, learning styles must not exist and everyone must learn the same way. Come on now, can anyone really believe that?

But that's exactly what this blogger does. And while I could dismiss him as just another talking head on the internet, he provides endless links to important, credible people who are making these reasoning errors. The American public school system is inflexible and atherosclerotic, still operating based on models set up at the beginning of the 20th century to produce docile factory workers. It's centered on the interests of teachers, administrators, and interest groups, all of which pay lip service to the interest of students, but ignore them. (What school of education actually spends more than a token few minutes talking about the huge body of research out there about how children think and learn--or adults, for that matter?) Thanks to the frenzy over learning styles and multiple intelligences, we've finally gotten a little bit of flexibility into the classrooms. It's not always done well; the token visual-spatial and hands-on activities don't always actually teach the main concepts in the lesson, but at least baby steps are happening. Kids are occasionally actively involved in what they're learning. But all this progress is hard-won, incremental, and extremely fragile. If we take the advice of anti-learning-style advocates and stop "institutionalizing" learning styles, we'll undo all the progress we've made. Or is that, perhaps, their agenda?

ASD social problems: a failure of common ground?

2009-11-19T22:34:00.005-06:00

I've been thinking a lot lately about the implications of "common ground."

The concept of "common ground" was so obvious that it wasn't defined and studied much until recently. (It's currently a popular organizing principle in cognitive psychology research on communication, itself a fairly new area). The basic idea is that when we speak to each other, we need a common reference to talk about. If neither person has knowledge about the world in common with the other, then they will be unable to communicate. A conversation might go like this:

American college student #1: "Where are you from?"
American college student #2: "A stone age tribe in Indonesia."
ACS 1: ::pauses, unsure what to ask:: "...What was that like?"
ACS 2: ::how on earth do you answer a question like that when nothing in a stone age tribe in Indonesia is familiar to an American college student?:: "Uh...I dunno."
ACS 1: "Oh."

If there were common ground, the conversation would be more like this:
American college student #1: "Where are you from?"
American college student #2: "I'm from Miami."
A.C.S. 1: "Oh yeah, my cousin's from there. Do you miss all the parties?"
A.C.S. 2: "Nah, I kinda like the quiet here. But I do miss the hot weather!"
A.C.S. 1: "Yeah, Minnesota weather is the worst. Do you know how deep the snow got last year?"
...etc.

This is why people always ask the same boring questions: "what are you majoring in?" "Where are you from?" "Do you know so and so?" If I know something about your major, or know someone who has your major, or had a teacher who taught classes in your major, I can ask you questions about it and share my experiences. Furthermore, each topic opens up a rich vein of potential conversational topics. If I know nothing about it, I can't think of anything to ask, and I can't share any relevant experiences.

As banal as these observations seem, they have an interesting implication: we might associate with people of our own race and socioeconomic background, not because we're prejudiced, but because we have more common ground that way. It's easier to talk to people with whom we share a lot of experiences, and we tend to do what's easy.

The concept of common ground might also be a reason why adolescents don't talk to their parents about their lives (although I'd imagine privacy, not wanting to be judged, or wanting to separate from their parents all play a role, too). If you think you live in a different world than your parents did, if you think your parents don't remember what it's like to be your age, or if you think your parents won't understand what you and your friends talk about, you're likely to think you don't have much to say to your parents.

Most studies of common ground involve one stranger teaching another how to do something. They demonstrate how opaque speech can be and how much communication relies on two people seeing the same thing:

Instructor: "First you, um, take this thing here--"
Doer: "The thing to the left of the red one?"
Instructor: "No no no--yeah, yeah, that's it--"
Doer: "Do I put it here?"
Instructor: "No, to the right of--yeah, to the right of that hole...you got it...now turn it over?"
Doer: "Wait, do I turn this over or do I turn that over?"
Instructor: "The bigger one."
Doer: "O.K."

Or, as a friend once said to me: "it's the thingy between the thingy and the other thingy." She was serious.

Conversational partners develop a set of labels that they use repeatedly with the same partner. They'll start with a long, descriptive label--"the blue bird with the red belly and the pointy beak to the left of the cardinal" and will gradually shorten it to "the blue and red bird" or "the blue pointy bird" and will use that label every time with the same partner. When they do the same task with a new partner, they may develop a different label; say, the "blue robin" instead of the "blue pointy bird."

For the labeling process to work, and conversational partners to agree on what objects are present, both partners must see the same features: the bird's blueness, the redness of its belly, and the pointiness of its beak, for example. They must also realize that the other person sees the same features they do--in other words, that their conversation partner's "blue and red bird" is the same as your "blue and red bird," and your conversation partner knows this. The complexity of this simple, everyday task leaves a lot of stumbling blocks for people with learning disabilities.

The first problem is that conversational partners might not see the same features in the first place. Consider the problems that arise when an experienced computer user is trying to teach an elderly person who has never used a computer before:

::they've just discussed how to turn the computer on and are getting down to the business of using it::
Young person: "Put your hand on the mouse."
Old person: "What's the mouse?"
YP: "You know, the gray thing that you click on."
OP: "..." ::Looks between the keyboard, which has buttons you click on, the mouse, which has buttons, and the computer, which after all has an on button you can click. All are gray.::
YP: "It has buttons."
OP: "...This?" ::picks up the mouse::
YP: "Yes. Now scroll to the start menu, left click on it, and hold the mouse button there."
OP: "What do you mean by scroll? What does the mouse do? What is left clicking? What am I trying to do?"
YP: "You're trying move the mouse around the screen so you can open a program."
OP: ::picks up the mouse and holds it on the surface of the screen:: "I put the mouse on the screen, why isn't it doing anything?"
YP: "No! You don't do that! It's a mouse, how do you not get this? I give up."

Yes, there really are people who don't know that a mouse is supposed to move an arrow around the screen that lets you interact with icons that represent files stored on the computer. And if you don't explain that, they certainly won't understand any fancy terms you throw around like "open a new tab in your browser" or "now you're going to work in an environment." And "directories?" Forget it.

In these situations, the old person rarely learns much about how to use a computer. The old person feels condescended to while the young person feels frustrated and unappreciated. If situations like this happen enough to the old person, he or she may just decide this newfangled technology stuff is too complicated and give up on trying to learn it entirely. Notice any parallels with learning disabilities?

The defining feature of a learning disability, for many kids and their parents, is the need to verbally explain a concept that everyone just knows. For instance, everyone just knows that you don't walk up to random strangers and grope them, but I know a boy with ASD who has to be told over and over. In an earlier entry, I described a dyspraxic person who viewed a coffeemaker as like a black box and did not understand how it worked. These errors are frustrating to neurotypicals because the correct behaviors are too obvious to be formulated s a rule or even verbalized. Experts in any domain are bad at explaining how they do what they do, but it's especially bad in practical and social domains. This spells trouble for people with learning disabilities that affect their practical and social functioning: they desperately need explained what only trained professionals can explain, just so they can share some common referents with the rest of us.

If sensory processing problems are severe enough at an early enough age, they seem to prevent kids from forming basic academic, practical, or social concepts, thus leading to the academic, practical, or social blindness that so frustrates neurotypicals. But this doesn't always happen; after all, some people's sensory processing problems go underground until adolescence or adulthood. However, these processing differences can still affect common ground. Such a person may not notice subtle features that neurotypicals notice, or they may notice a different set of features.

Once they have referents, people need to know that their conversational partner shares them. This is difficult for people with ASD for two reasons. First, people with ASD may be used to perceiving the world differently than everyone else. As a result, they correctly believe that others do not share their frame of reference--there is no common ground. Second, people with ASD are less able to use the compensating behaviors neurotypicals use to create common ground in difficult situations.

It turns out common ground can be difficult to establish even for neurotypicals (think about the conversation between the instructor and the doer or the old person and the young person). Explainers compensate through gesture: they use pointing and eye gaze to indicate an object. Comprehenders ask questions. For example:

Explainer: "The screwdriver you're looking for is in the study."
Comprehender: "Where in the study?"
Explainer: "It's over there" ::points at a table in the back of the room. However, pointing gestures can be a little vague sometimes, especially since there are several pieces of furniture in the back of the room. So the comprehender asks for clarification::
Comprehender: Do you mean that table? ::walks closer to it and points at it::
Explainer: Yeah, you got it. So it'll be uh, on the right side, behind, you know, the thing that holds the papers... ::moves hands to the right and mimes pushing it aside::
Comprehender: I just found a paperweight on the right there, and all I'm seeing behind it is a giant pile of papers. Are you sure it's there?
Explainer: Oh, sorry, I forgot I put it away. Actually, it's in the drawer...

People with ASD are bad at following gaze from infancy. They may not realize that gaze direction carries information. They also tend to be bad at asking questions. When Adam was in speech and language therapy, he had to be taught to ask his conversational partner questions, not just talk about his own thoughts. It took him a long time to internalize this. It also did not occur to him to ask questions when he didn't understand something someone said, which happened often when he was in early elementary school. Thus, he would often repeat phrases he heard without knowing what they meant--and he didn't know what they meant because he never asked.

In short: we can look at social deficits in ASD (and probably nonverbal learning disabilities) as a failure of common ground. Seems like a nice alternative to the "no theory of mind" explanation that doesn't work for a lot of high-functioning kids.

How can we help kids like Tanya?

2009-11-17T17:16:00.002-06:00

I was talking to a grad student and former teacher about problems like Tanya's today, and asked her what she would do to help such a child. She told me she taught her 4th grade students to circle the words who/what/when/why/where/how when it appeared, underline key vocab words in the question, and make a note when multiple items need to be mentioned (i.e., the three in "give three examples of traits produced by natural selection"). This reminds me of how I used to circle or underline the word "not" when it appeared so I wouldn't answer a question backward. I wish I had known her other tips as a student.

Here are some benefits of her approach for students like Tanya:

It tells them what sort of words are important for comprehension--the "w" questions, certain sorts of vocab words, and the number of examples to give. For young students just learning to look for these things, it fosters thinking habits needed for reading comprehension. (When they get used to thinking this way, the circling/underlining will be unnecessary and will seem gimmicky).
If they have to circle or underline it, they will be more likely to pay attention to it.
As a result, they are more likely to answer the exact question being asked, and not some tangentially related one (a common mistake).
It slows them down. This in itself should reduce the number of "stupid mistakes."
It prevents them from misreading words (i.e., reading "fovea" instead of "retina").

For the teachers and clinicians among you: have you tried things like this, and have they worked? What else do you do to help students understand test and homework questions as written?

For the rest of you, did your teachers do anything like this, and did it help?

Savant syndrome: still a landmark to our ignorance

2009-11-17T01:58:00.004-06:00

I haven't been blogging much lately because I've been trying to wrap my brain around savant syndrome. Since it's basically the flip side of gifted people with learning disabilities, it's amazing that I never really thought about it before. I'm obsessed now. I'm also discovering the same problems in research on savant syndrome that I've seen in research on giftedness and ASD.

The main problem is that the population in question is never rigorously defined, and the working definition is vague and constantly shifting. That's understandable in research on gifted because researchers are education people concerned with practice and equitability, not scientific psychologists trained in cognitive development. In ASD, research attempts to find "the explanation for ASD" against a shifting pattern of PPD-NOS, Asperger's, and other diagnoses. I know there is research that explicitly attempts to find subgroups that differ in some meaningful cognitive or neurological way, but I have yet to encounter them.

With savant syndrome, the vagueness increases exponentially. It doesn't help that the terminology has changed. In the early 20th century, there was "idiot savant," which was inaccurate and demeaning. After Rain Man, there was "autistic savant," which obscured the fact that many savants don't have autism. Both terms were replaced by "savant syndrome" recently, probably thanks to Darold Treffert.

The variety of talent--each of which probably has a different neural basis in neurotypical people--is astounding. There are artists and musicians (all with perfect pitch, some composers and some performers with perfect memory for pieces they heard once 40 years before). There are calendar calculators, who can tell you what the day of the week was on a certain date. There are math geniuses who can find prime numbers of 8 or more digits or factor large numbers in their head. There are polyglots who can learn a language in a week, people with perfect time sense, prodigious memorizers, people who can measure accurately without instruments, and more. Basically, if someone with a nonverbal learning disability is likely to be bad at it, a savant is likely to be good at it. Some believe people with hyperlexia are also savants because they have good mechanical abilities with language but little comprehension; this is more controversial. Only the most general similarities link these skills. All of these talents could be loosely called "right brain." They have been (falsely) called nonsymbolic. (Math is clearly symbolic, as is music to a lesser degree. Calendars aren't exactly symbolic, but they're highly structured). It's hard to believe there can be one cause for all these talents, but of the more than a dozen articles I've read in the past couple weeks, every single one has proposed one single explanation for all of savant syndrome.

Worse, most of these explanations aren't savant syndrome-specific. They tend to be explanations of autism imported over wholesale, on the assumption that savants are all autistic. (This is a misconception probably created by the movie Rain Man--in fact, only about half of savants are autistic). So we see the same, somewhat annoying theories about weak central coherence, detail-oriented processing, etc., most of which have only the most tenuous connection to savant abilities. For instance, none of these theories have anything to do with memory, but every savant has higher memory than others with the same IQ, and many have memories that would be impressive in a neurotypical. For some, like Kim Peek, the memory IS the talent. As far as I know, while there may be minor memory differences between people with autism and neurotypicals, memory differences are NOT a key symptom of autism. And yet, in my literature search, almost every article seemed to look only at autistic savants, use autistics who were not savants as control groups, apply a theory about autism to savants, and/or just cite a lot of literature about autism.

Consider the differences between Kim Peek, the inspiration for Rain Man, and Daniel Tammet, known for reciting pi to 22,514 places. You can see their brief encounter here. Kim has mental retardation and lacks a corpus callosum; Daniel believes he owes his talents to synesthesia, possibly caused by epileptic seizures as a child. Daniel has come up with an intriguing explanation for his abilities (in the most recent Discover magazine, I believe), but I'm not sure how well it applies to Kim. Similarly, a theory designed to explain Kim (not that I've seen any) might not cover Daniel.

A discussant at a 1964 meeting of the APA said that the importance of the savant "lies in our inability to explain him; he stands as a landmark of our own ignorance and the phenomenon of the idiot savant exists as a challenge to our capabilities" (Horwitz et al, 1965). Despite our advanced neuroimaging techniques, that seems to be as true today as it was then.

What happens when visual processing breaks down? Rickie's story

2009-11-10T17:15:00.004-06:00

When sensory perception breaks down, its ripple effects can spread throughout a person's life. It disrupts academic and social functioning. Worse, it can lead to emotional problems and even suicide. The underlying problems in the brain may never be diagnosed: not knowing that others see differently, a person may think their faulty sense is normal until their teenage years, by which time they have had enough hurtful reactions and misdiagnoses to avoid describing their perceptions. In A User's Guide to the Brain, John Ratey describes how this happened to a girl, Rickie. Bold for emphasis was added by me:

"Rickie's father still remembers an odd incident that took pace when his forty-five year old daughter was only three. They were standing together in front of a giant picture window, looking out into a forest. Suddenly, Rickie began to tremble. She grabbed her father's hands and stood virtually paralyzed, deathly afraid. Her father hurriedly asked her what was wrong. 'The trees are coming into the house!' she yelled. 'They're all coming in here!'

Her father was taken aback by Rickie's strange behavior, but then again, she was only three, and young children certainly have their moments. He dismissed it. But it was a defining moment that would cast Rickie into a tortured life, though at the time neither she nor her father knew it...

[Rickie] was a bright student when she first entered elementary school in the early 1960s. But by the time she had finished third grade she heard the teachers talking behind her back: 'She's stupid. We're going to have to put her with the "special" kids.' Rickie was terrified. She loved schoolwork, even though it took her a long time to read, write, and do math.

Rickie had one great friend, but that was it. At home she was vibrant and full of life. But she never played with more than one child at a time, and avoided any kind of group activity. She heard the labels again: 'She's a loner.'

Rickie's parents had her tested. Her eyesight and hearing were fine. Her cognitive abilities were well within the norms...She was placed with other children who had learning disabilities because she just couldn't keep up with the regular class.

As Rickie got older she became mystified herself. At tmes everybody and everything seemed far away. She felt as though she was sitting in a closed box and seeing things 'through a pinhole.' But she didn't tell anyone; everyone already thought she was strange, and she certainly didn't want to say anything that made her seem even more like a 'weirdo.'

Then her grandfather, the only adult who didn't judge her, died, pushing her into a descent from sadness to despair. She was admitted to a psychiatric hospital when she was thirteen. She was first diagnosed as mildly autistic and then as borderline schizophrenic. Her fate was sealed, for in psychiatry in those days...a diagnosis...was impossible to shake, and it directed all subsequent treatment.

For ten years Rickie was in and out of mental hospitals. She became severely frustrated because no one could tell her what was wrong. The insults, the scolding, the drugs they gave her, and the sense of futility made her more and more depressed. She got so bad at one point that she was given a series of eighteen shock treatments, which jolted her out of clinical depression, but only long enough for her to try to kill herself...

The damnedest thing was that often, when she was talking with a doctor, she was lucid and calm...the doctors figured her lucid spells were deliberate cover-ups.

When Rickie was twenty-three she was referred to Melvin Kaplan, a developmental optometrist--one who specializes not in how the eyes work alone but how they work together with the brain. Although standard eye exams had shown that Rickie had 20/30 vision in each eye...she was prone to accidents and falling because she walked into or tripped on objects that someone with good vision would easily have avoided...

Kaplan asked Rickie to focus on an object. She stared for a minute or so and then looked away. Kaplan asked her, 'When you look at something, how long does the image stay?'

Rickie seemed puzzled.

'Does it stay or does it disappear, vanish?' Kaplan asked.

'It stays. I mean, I can make it stay.'

'What happens when you look at me?'

'Well, if I look at you for a minute or so, you start to disappear. But if I get my will power going, I can keep you in sight for a long time.'

'And what happens to the rest of the things in the room?'

'At first I see them, and you. Then, as I concentrate harder on seeing you, they get dimmer and dimmer, until I can't see them at all.'

Kaplan expressed his surprise.

'Isn't that the way everybody sees?' Rickie asked.

...Kaplan conclued that Rickie could not sustain a visual image for more than a minute without beginning to shut down everything else. She had to muster all of her brain power to keep seeing...Rickie had been struggling with a serious visual perception problem that probably became evident when she was about three years old--around the time of that fateful afternoon when she became frightened that the trees were 'coming into the house,' an early sign of the eventual collapse of her depth perception...

Rickie may well have had mood problems, but the terrible sequence of events that almost led to her suicide could have been avoided with the proper detection and understanding of what was initially a pure perception problem.

...When she was a teenager, [Rickie] knew the world sometimes didn't look right, but didn't want to say anything about it because she was afraid of the consequences. On one occasion she had complained to her psychiatrist that when she tried to read, the letters would suddenly crumble. He told her she was phobic--that she was a poor reader and was afraid to read because she knew she would fail. Rickie knew that if she objected more vehemently she would be rehospitalized, so she simply shut up...

Rickie had such trouble reading [because] she would look at the words in a book, and soon they would crumble--just fold and collapse on the page, melting into a black wash. If she tried to focus on the blackboard the room would soon get dim; the teacher would start to appear farther away...she literally couldn't see the words, or the board...She wasn't a loner, either. She loved people and friends and yet because she could only focus on one object at a time, dealing with more than one person in front of her was confusing at best and frightening enough that she never got involved in any group activity...She thought it was normal to struggle to see and hold her visual field together, because that is what she had always known. She thought it was that way for everyone.

[Improving her visual focus using special glasses was easy enough.] ...the truly more difficult part of Rickie's recuperation was correcting the psychological problems she had developed...after two decades of learning that people were cruel and could not be trusted, it took her years to reverse her depression and improve her social skills permanently. Not until she was forty was Rickie able to feel normal.

But she succeeded. She went to work as a rehabilitation counselor for people recovering from mental illness. She got married, had a baby, and then twins...

At one point, however, Rickie nearly lost it all. When she began a job and moved out on her own, her vision suddenly collapsed. She panicked, horrified that all her problems would come flooding back. She was readmitted to the hospital, calmed down, trained with her glasses again, recovered quickly, and never again returned to the psychiatric halls. The episode taught Rickie and her doctors a vital lesson: stress can shut down her visual system.

...Rickie has recovered not only visually, but psychologically as well...Unfortunately, there are other Rickies in the world who have perception problems that have not been diagnosed. There are still others who have actually discovered their peculiar perception problem and had it corrected, but have not been able to rebound psychologically or socially after years of insult from the world around them."

Take-home messages
This is written as if for parents, but only because it's shorter to say "your child" than "your child, student, or other acquaintance." Teachers and others could probably benefit, as well.

Perception may be the most important psychological function to study, in that how you perceive information affects everything you do with it downstream.
If your child says something odd about what they see (i.e., "the trees are coming toward me!"), pay attention. They might just have an active imagination, but they could be describing how the world really looks to them. Don't freak out, but look for more conclusive signs of perception problems.
Misdiagnosis can cause real harm. A label can stick with someone for life. Avoid people who apply the diagnosis-of-the-month to every kid with a problem, and look for people who will do a complete neuropsychological evaluation before they label your child. Be careful not to assume an emotional or motivational problem when there could be a perceptual one.
When a student I know went to a hearing clinic to ask about her problems hearing speech in noise, they asked her if she was under a lot of stress. She was annoyed, because she knew how to handle stress and was already working to eliminate it from her life, and she thought her functioning was worse than stress alone would predict. But actually, the clinicans were asking a good question. A person with a perceptual problem or a learning disability, like a person with chronic pain, has to struggle to hold it all together and perform tasks most of us take for granted. While they may look normal from the outside, they feel exhausted from the effort that requires. Stress depletes their resources, they no longer have the mental effort to force normal performance out of themselves, and their performance plummets. This is one reason why uneven performance is considered a sign of learning disabilities. The take home message: while stress management is important for everyone, it's especially important for people who might have a perceptual problem or learning disability. Make sure your kids have good coping skills!

Is the DSM-V throwing the baby out with the bathwater?: Thoughts on labels

2009-11-09T21:03:00.006-06:00

The forthcoming new DSM (DSM-V) is getting rid of the diagnosis of Asperger's syndrome.* It's sparking a lot of controversy. The New York Times printed a set of three letters that represent some of the main positions in this debate. What a great jumping off point for a discussion of the autistic spectrum, diagnosis, and what makes a label valid!

Note: The names of disorders (i.e., autism, Asperger's, ASD) will usually appear in quotes but will occasionally appear without. When it appears in quotes, I'm talking about the label. When it appears without, I'm talking about the condition.

To the Editor:
Only an academic psychiatrist would believe that because the term Asperger’s syndrome is “confusing and not terribly useful,” to quote Catherine Lord of the University of Michigan, it is appropriate to replace it with “autism spectrum disorder” — a category that is even broader thus even less useful.
Perhaps they should consider a more politically correct and even broader term: “mentally and emotionally challenged,” which would encompass the entire range of everything and make the diagnostic manual obsolete.
Ron Baldwin
Newark, Del.

Ron Baldwin must have been so proud of himself for pointing out this logical loophole that no one had noticed. Nonetheless, he has a pretty unsophisticated view of what makes a label valid and useful.

What makes a label valid?
What makes a label valid is not how broad or narrow it is, but how well it posits a cause-effect relationship that suggests specific ways of responding to the condition. The cause should be an explanation of the specific function that is impaired and the corresponding brain wiring problems. For example, here's a description of a condition I made up:

"Hyperfocus is a neurological profile in which an individual has heightened ability to focus on one thing (a strength), but has impaired task-switching ability (a weakness). Hyperfocused people can be seen playing video games or writing books for hours on end, often forgetting to eat, sleep, or go to the bathroom, and often do not respond when others interrupt them. They appear to be in a trance and may describe themselves as in a 'flow' state if familiar with the concept. XYZ problems in an areas that integrate visual information and XYZ task-switching areas are underdeveloped in hyperfocus. People with this profile are exceedingly good at tuning out environmental noises because of XYZ process in XYZ auditory and frontal attention areas. This may because when not in a hyperfocused state, they are intensely auditorily sensitive and may jump at every little noise because of hyperactivation in auditory area XYZ.

Hyperfocus can be constructive in people who do creative work--most accounts of creative work describe a flow state of this sort, hence the idea of "inspiration." It can be problematic in school and work environments that require a lot of task-switching. It's not great for multitasking or performing rote tasks that don't require a lot of attention. Hyperfocused adults should arrange their lives and careers in such a way that their hyperfocus helps, rather than harms, their performance. They may need to set timers to break them out of their trances. They may need headphones, earplugs, etc. to help with their auditory sensitivity, as well as coping skills like avoiding noisy places when possible. Helpful exercises would train them in integrating visual information, integrating auditory information, and task-switching. Repeated practice would help rewire the brain so hyperfocused people have an option other than hyperfocusing."

Valid labels will tend to be fairly narrow because they have to be specific about function and, when possible, neural mechanisms. If there are ten different reasons why one might have an attentional or social problem, each one will have a different label and they may be grouped together as a family ("Attentional Disorders" or "Social Disorders"). However, broad labels of a certain sort can also be valid. If one functional problem (a sensory processing difficulty, say) turns out to cause a variety of symptoms now grouped under several labels (i.e., "ADHD," "Asperger's," "high-functioning autism," "PDD-NOS," "SPD," and "NLD"), then the label will seem "broad." It will still be valid, though, because these heterogeneous symptoms have one cause.

In this respect, psychological diagnosis would work like medical diagnosis, which it currently does not. Medical diagnosis organizes by causes, not by symptoms. You can imagine how much headway a doctor would make if there were diseases called "Fatigue," "Nausea," "Congestion," "Mild Chest Pains," "Vomiting," "Fever," etc. But I would argue that "ADHD," "Asperger's," and the rest are the equivalent--they are descriptions of attentional, social, and motor symptoms that can exist for any number of reasons.

What makes a label useful?
What makes a label useful is very different from what makes it valid, although obviously a valid label will be more useful in that it implies more suggestions for treatment.

"Useful" can mean at least 3 different things. For Ron Baldwin, it means "valid and intellectually consistent," a nice minimum qualification that, IMO, most LD labels don't currently meet (but that's another post). It can mean "medically valid," in the sense I just described. It can mean "useful for identifying people who have a learning disability and getting treatment they might not otherwise have, and which is better than nothing." A label can be useful for identifying and treating people without being either intellectually consistent or medically valid. And I think the current labels are very useful in this sense. Finally, it can be useful for helping people understand themselves and explain themselves to others. An intellectually and medically consistent set of labels would probably be more useful for this, but some people find the current labels useful in this sense and are very attached to them.

How Valid and Useful are Asperger's and ASD?
With this more sophisticated understanding of diagnosis in mind, let's look at "Asperger's Syndrome" and "Autistic Spectrum Disorder" again. How good are these labels? Which is better and which is worse? And are either too broad to be useful?

Several years ago, shortly after Adam was diagnosed with "hyperlexia" and "autistic spectrum disorder" (more like "Asperger's" than "classic autism"), his parents went to get a second opinion. The diagnostician said he didn't recognize "hyperlexia" because it was a linguistics term, not a clinical term. He said he had only 2 labels: "classic autism" and "Asperger's." Since Adam clearly didn't have classic autism, it was "Asperger's" or nothing. While not all clinicians are like this man, "Asperger's" is often a convenient dumping ground for high-functioning kids with nonverbal learning disabilities who don't quite fit any label--kids with persistent attentional, motor, and social issues who don't seem to have ADD, classic autism, emotional problems, or any of the other usual suspects.

What happens to these kids when there's no longer a label "Asperger's?" I see two possibilities. The first one was raised in a letter by Nomi Kaim, who herself has Asperger's.

Professionals who work with Asperger’s have a more specialized knowledge base than those who treat autism as a whole, and books on Asperger’s address topics like higher education and romantic relationships that do not apply to many people with autism. Indeed, having to constantly straddle the line between disability and (often astonishing) capability is what makes the Asperger’s experience unique.

For me, the greatest gift of the term Asperger’s syndrome is that it has given me an identity. If the label disappears, I fear that the distinction between Asperger’s and autism will eventually also disappear from the literature and from the minds of professionals. Then people like me, who have a subtle, even “invisible” disorder, will never find the resources they need to get a diagnosis and make sense of their lives.

On the other hand, there are more descriptive labels that haven't yet gained wide acceptance: "Sensory Processing Disorder" (SPD) and "Nonverbal Learning Disability" (NLD). Sensory Processing Disorder seems to have more of an obvious basis in brain function, while "NLD" seems to be more of a symptomatic catchall, like "Asperger's" and "ASD." Both labels could fit children who are lumped into "Asperger's" by default. Maybe if we stop labeling them "Asperger's," "SPD"and "NLD" will come into use out of necessity.

"ASD" is designed to be an umbrella diagnosis. Like "Asperger's," it's broad enough to include people with odd patterns of noverbal learning disabilities that don't look like classic autism, and might not otherwise be diagnosed. It has two major advantages relative to "Asperger's," and two disadvantages.

First, "ASD" is more likely to help kids get treatment. According to the New York Times, in some states like California and Texas, people with a diagnosis of autism qualify for state services, while those with Asperger's and PDD-NOS do not.

"Asperger's" is a one size fits all diagnosis: you have it or you don't. "ASD" highlights that people with the disorder are just on the extreme end of the continuum of traits we all have. As such, it lets tools that help severely socially disabled people be used to help people with less severe deficits. Furthermore, it suggests that people with ASD are not aliens; their differences are in degree rather than in kind. That helps neurotypical people understand and sympathize with them despite their sometimes frustrating behavior.

But "Asperger's" also has advantages "ASD" lacks. Because "Asperger's" is somewhat more homogeneous than "ASD," a treatment is more likely to work for a particular child with Asperger's than it would be for one with ASD. The variety within "ASD" might be one reason for all the controversy between proponents of various approaches (ABA, Floortime, diet, etc.). Most likely, none is the one true solution to autism, but each clearly works for at least some kids.

"Asperger's" is visualizable enough to be the basis of an identity. The label "ASD" is too vague for a person to really identify with what it describes, but anyone can understand identify with a "little professor." As a result, people with Asperger's have a deep, emotional attachment to their diagnosis:

For me, the greatest gift of the term Asperger’s syndrome is that it has given me an identity. -Nomi Kaim

"On one trip to the bookstore I came across a book about Asperger's Syndrome...After about 15 minutes of reading about AS, my jaw dropped to the floor. I said very audibly in the store, 'Hallelujah!'...I felt an immense wave of relief wash over me as everything suddenly made sense. I looked back over my life, [through] all the painful memories that could now be explained...Getting a diagnosis can be a very cathartic experience...Those hidden barriers between you and others that seemed like a mystery over the years will finally be understood...It made me feel both better and worse knowing that I hadn't meant to disturb or hurt anyone." -Nick Dubin, Breaking Through Hidden Barriers, quoted in Asperger's From the Inside Out

"I have finally reached the end of my race to be normal. And that was exactly what I needed. A finish--an end to the pretending that had kept me running in circles for most of my life." -Lianne Holliday Willey, Pretending to be Normal

"I bought a book of essays on the condition...and devoured it with stunned fascination. Despite the daunting medical language of some of the chapters, I felt as though I had stumbled upon my secret biography. Here it all was--the computer-like retention, the physical awkwardness, the difficulties with peers and lovers, the need for routine and repetition, the narrow, specialized interests...had they created a developmental disorder just for me?...I wouldn't wish my condition on anybody...yet I am also convinced that many of the things I've done were accomplished not despite my Asperger's syndrome but because of it. I'm sure it's responsible, at least in part, for my powers of concentration...I'm sure that it's one of the reasons I take my work so seriously." -Tim Page, in Parallel Play

"Two years after diagnosis, my relationships have been more civil towards [my coworkers]. I believe they improved because I learned to be easier on myself and others for our imperfections. -Jason Zervoudakes, quoted in Asperger's From the Inside Out

Now imagine what a blow it will be to them to lose this diagnosis that had such effects on their lives. Is it any wonder that the new DSM is so controversial?

Some conclusions
Neither "Asperger's" nor "ASD" are medically valid. "Asperger's," because more specific, is somewhat more intellectually valid. "ASD," because more general, is more useful.

There's actually a simple solution to the controversy. Why not maintain both labels, but group "Asperger's syndrome" as a more specific disorder under the umbrella of "ASD?" That's how I've always thought of it and seen it described.

We don't have a science yet since our diagnoses are far from medical, so we should be humanist about the diagnostic process and adopt whatever labels would do the most good for the most people. Thus, we should use both.

I think the DSM-V is taking the wrong approach to making labels more "valid." Rather than throwing out the current labels, we should instead revise them to make them more intellectually and medically valid, and add more.

What it feels like to have a learning disability: error detection without error correction

2009-10-28T16:40:00.003-05:00

Tanya* is a highly gifted girl who is increasingly coming to wonder whether she has some sort of nonverbal learning disability, but is increasingly frustrated because none of the labels she's encountered seem to fit very well.

For her, the central experience is that she can detect her own errors, but can't stop herself from making them.

"In my AP psych class, they talked about how rats could learn how to do things like avoid pressing a bar so as not to get an electric shock. I always wondered how rats knew they were pressing on the bar so they could stop. If I were a rat, I wouldn't be able to stop pressing the bar.

I used to be good at taking tests as a kid, but now in high school, I'm not. First of all, I get all the 'stupid questions' wrong, the ones that are supposed to test how well you remember every word of the textbook. OK, so I can't remember whether Jamestown was founded in 1603 or 1607 (it was 1607). But I know it was founded before the Pilgrims landed on Plymouth Rock, I know most of the early settlers died of disease because they stupidly decided to land in a swamp, and I know they were mostly young men out for adventure, not families like the Pilgrims. But any time I get a question like "Which year was Jamestown founded, 1603, 1605, 1607, or 1609?" I ALWAYS get it wrong.

It really makes me mad that kids who ask questions showing they don't understand a word of the textbook can get these questions right, and I can't. I study hard and try to remember that stuff, but I still get these questions wrong, every time.

But that's not so important, right? After all, there aren't enough questions like that to bring down your GPA too much. And at least I can feel all superior because I understand what I've learned, I haven't just memorized it. Ah, but that's the least of my problems.

I had a bio teacher who was a stickler. If you didn't put your graphs on a separate page, on graph paper, she'd take off points. If your intervals went up by 2 instead of by 1, or vice versa, she'd take off points. If you gave one of your lab writeup sections a different title than she liked, or centered it instead of left-justifying it, or some other formatting "mistake," she'd take off points. I don't think I ever got a point off from her for content, but I routinely got half the points taken off my homework for formatting. She never said at the outset what her rules were, or gave us a list of them to look at when we did our homework. I could never remember and follow all her rules, even though I spent hours trying to get my lab reports right. I would dread getting my lab reports back because I never knew what she was going to pick on, but I knew there'd be something wrong. I thought her rules were stupid, but I really tried, because I got sick of failing half my homework assignments.

Bio was a real problem, but at least there, the teacher had it in for me. (You should've seen the sour look on her face when she handed back my A+ final--multiple choice, so she couldn't do anything about it). My math teacher, though, was actually a nice guy. It didn't matter. I used to dread seeing all the red marks on my homework when he handed it back. I lined problems up wrong, forgot about negative or double negative signs, and probably did lots of other stuff I couldn't identify. Often, I had no idea why I was getting these problems wrong. I knew what all the steps were. It was always a calculation error I made, and it seemed to be different every time. I paid lots of attention to how I lined up my work. I wrote out every step of the problem so it'd be easier to check. Every step, I checked to make sure I was using all the negative signs. And after I finished each problem, I checked it repeatedly. It didn't help. I never caught everything.

Needless to say, it was the same way in French. Pages of complicated, creative sentence structure and ideas with a red mark on practically every line. Obviously, I read my work aloud to myself and checked it for mistakes, but I didn't catch the missed accents, misconjugated tenses, etc.

Every time I have homework or a test, I would read it over carefully, see nothing wrong, and smile with satisfaction at my perfect assignment. Then I'd be shattered when it came back covered with red ink.

It'd be even worse, because every so often, when it really counted, I wouldn't make these mistakes. I got a class grade of A- by the skin of my teeth in math and bio by getting a perfect score on key tests. I didn't know why I suddenly wasn't making mistakes, because nothing felt any different than it usually did. And then my teachers were surprised, and started expecting more from me. Then they were disappointed when it was a fluke and I couldn't deliver.

It felt like this was completely out of my control. It was like the mistakes appeared by magic. It was like they were falling out of the sky, or like I had a magnet that attracted them all. They didn't feel like they were coming from me. After all, I couldn't even see them. I could never figure out why I was making them, and I could never stop myself, either. Since it was irrational to think I was cursed, or somebody up there hated me, I decided I must be becoming stupid. That sure answered the everlasting question: if you're so smart, why are you doing so badly?

My parents would tell me to work harder, pay more attention, check my work more. As if it were under my control. All I knew was, something was wrong, it wasn't under my control, and it was terrifying. After all, if I had a choice, why would I make these mistakes? I am angry and frustrated with myself and disgusted because something is obviously wrong with me. I'm frightened about my future, feeling helpless, out of control, and demotivated. And I'm frustrated that I can't convince my parents and teachers, who have such high expectations, that I'm doing the best that I can.

The whole point of a learning disability is that you can put you best effort into something, be really smart, and still do worse than you "should." If I had one, it would mean that I'm not becoming stupid, I'm not lazy, and yes, I really am paying attention. And if there's a name for what I have, then someone's probably studying it. And if someone's studying it, then maybe someone can fix it, before my grades and self-esteem go completely down the toilet."

Why Gifted Education?

2009-10-19T13:12:00.003-05:00

Despite the push to ensure no child is left behind, an unlikely group of students has fallen through the cracks: gifted students. This is only exacerbated by a set of false beliefs that many school administrators and teachers hold: that kids who are born smart will stay that way, no matter how they are educated; that providing a more challenging education to some kids is "elitist" and individual differences should be minimized; and that society's resources should mainly or only be spent on kids who are doing badly in school.

Unfortunately, cognitive science research and research on gifted kids suggests that these beliefs are false. And when we shortchange gifted kids, we shortchange society.

What do we mean by gifted?
The term gifted has been defined many different ways. When people think of gifted children, they variously imagine child prodigies (i.e., Mozart), geniuses who discover or invent things of lasting importance (i.e., Einstein), students in honors classes, or just people who are very good at something. Many gifted programs define them as those with an IQ of 130 or more (or 120 or more combined with evidence of special talent). The Javits Act, which provides grants for education programs for bright kids from low-income families, uses the following definition (as do many other government acts):

"The term gifted and talented student means children and youths who give evidence of higher performance capability in such areas as intellectual, creative, artistic, or leadership capacity, or in specific academic fields, and who require services or activities not ordinarily provided by the schools in order to develop such capabilities fully."

Thus, the gifted are a heterogeneous group, but generally, most of them perform at least a year above grade level, have a higher-than-average IQ, and demonstrate any or all of a set of traits commonly associated with high intelligence. These traits, which contribute to the need for a different educational experience even more than intellectual ability level, include a tendency to constantly ask questions, a need to learn and use their brains (though not necessarily for academic subjects), higher-than-average creativity, and perhaps a tendency to nonconformity. They may also care deeply about big philosophical questions like the meaning of life and the reasons why evil exists. They're often deeply concerned about adult issues like protecting the environment or ending hunger, long before their peers consider these questions, and before they themselves are really emotionally ready to confront these problems. Such a symptomatic definition of giftedness amalgamates many commonly-used definitions and clearly identifies a group of children different enough from the norm to "require services or activities not ordinarily provided by the schools" in order to develop their abilities.

Reason 1: Intelligence doesn't last if you don't use it
Many people believe that if children with above-average abilities spend years doing what everyone else is doing, they will still have above-average abilities when they leave school. Or, to put it differently, a 150-IQ kid will stay a 150-IQ kid after 12 years of performing at a 100-IQ level. Sadly, the last 20 years of neuroscience research shows that this is not the case.

Neuroscientists use the phrase “use it or lose it,” meaning that any connections between neurons that are not used regularly are lost. The neurons stop performing the rarely-used function and are used for other purposes. This is why, if you don’t speak a foreign language or practice a musical instrument regularly, you gradually forget how to do these things. Similarly, gifted children’s brains are built on connections between networks of neurons, which they use to make connections between ideas quickly and creatively. If they never use these abilities, they will eventually lose these networks. In short: a gifted kid, if ignored for long enough, stops being a gifted kid. When this happens, we lose everything they have to offer.

Neuroscience has also shown us that once you learn something, you can’t just learn it again. Learning is a process of building new neural conections. In order to learn something again as if for the first time, you would have to undo the brain structures you built while learning the subject in the first place. Both experts on gifted kids and the children themselves agree: they don’t learn better by hearing the same concepts presented over and over again to the rest of the class. They just get bored and tune it out. Meanwhile, their minds have not been engaged, their time has been wasted, and they are one step closer to losing their abilities.

With greater capabilities come greater needs for certain sorts of educational stimulation. We have seen that a certain amount of mental stimulation is required to merely keep the brain ticking over, never mind creating any improvement. Advanced children tend to perform above grade level because their minds work differently: they can sift through a large amount of information, find the relevant facts, and understand the relationships between them, and they can usually do so very quickly. Because they can go through lots of information very quickly, they need nearly constant stimulation just to maintain their current level of ability. They are also capable of, and interested in, going into depth on a subject, especially if it interests them or answers their questions. For example, at home, a child interested in bugs may keep an ant farm, spend hours in the backyard digging up bugs and observing them, check out armloads of books from the library about them, draw them, and talk about them ad nauseum. Such a child may be frustrated and confused by a class that breaks a topic into single facts and dispenses them one at a time. Stephanie Tolan, an expert on the gifted, compared this situation to an elephant being fed grass a blade at a time: “he starves before he realizes anyone is trying to feed him.”

Gifted children often know when their needs are not being met. Many report feeling like they are "turning stupid" or their brains are "shutting off,” sometimes while attending excellent schools.

Reason 2: Without some sort of intervention, gifted kids are likely to lose their abilities in school
Experts on gifted children estimate that for the typical gifted child, 50% of time spent in class is wasted. For “highly gifted” children of 160 or higher IQ, it may be as high as 90%.

How can so much of a child’s time possibly be wasted? Imagine a seven year old who can read at a high school level. This child also ponders questions like “what happens to us after we die” and “can my baby sister think if she doesn’t have words yet?” At home, he reads “The Dinosaur Heresies,” a book written for adults that argues that dinosaurs were actually warm-blooded, asking his parents for help with words and concepts he doesn’t understand. Although there’s a lot in this book he doesn’t understand, he’s learning facts about evolution he wouldn’t otherwise learn until middle or high school. He’s also getting a sense of the geological time scale, which is invaluable for taking a historical perspective—something high school and college graduates have been demonstrated to have trouble doing. He’s also learning by example how a good argument is structured. At school, the same child spends his time on phonics, readers, and the like. Observing a child like this, it becomes more intelligible how 90% of a child’s time could be wasted in the classroom. Furthermore, one can see how even a “good” public school simply will not meet this child’s needs. No matter how well-resourced the school, how skilled the teachers, or how small the classes, a first grade class teaching phonics and basic reading skills will not help a child who can read books for adults with decent comprehension—a fundamental disconnect.

In short: All the funding and skilled teachers in the world won’t make Dick and Jane appropriate for a child who can read books for adults with decent comprehension. Such a child would learn more than he would in school just by going to the library and reading whatever adult books he likes all day.

While this child represents the extreme range among gifted children, his case illustrates the problems faced to a lesser degree by many children.

Children lose their abilities if they can’t use them, and they can’t use them between 50 and 90% of the time. We should not be surprised, then, if many of our gifted kids simply stop being gifted.

Reason 3: Society has a responsibility to gifted kids too, and can benefit from educating them properly
Society has a responsibility to provide all children with an appropriate education, one that fully develops their capabilities so children can use them to improve society. This imperative is reason for making sure that disadvantaged kids don't get left behind, but it's also reason to make sure that gifted kids develop 100% of their capacities, not just the (at most) 60-75% teachers can help them develop without paying much attention.

Furthermore, society has an interest in developing the abilities of highly smart and talented kids, too. Not only the cliched "next Einsteins" but many of the next inventors, statesmen, CEOs, doctors, lawyers, engineers and yes, teachers and reformers, will come from their ranks.

Reason 4: We're creating a new "achievement gap"
While trying to close the achievement gap for underachieving students, public schools have actually created a new and equally unconscionable gap. At present, most gifted kids can only develop their talents by going to private schools, which are too expensive and far-away for many families, or by homeschooling, which is almost impossible for single-parent families or families with two full-time breadwinners. Thus, gifted kids from wealthy white families have the opportunity to develop their talents while those from poor minority families stagnate and eventually lose theirs. Not only does society lose talented people, but minority groups lose exemplars who could lead them to success and true equal opportunity.

How Big a Problem is There?
Nationwide, low-achieving students get more attention than gifted ones. According to a report on High-Achieving Students in the Era of No Child Left Behind by Ann Duffett, Steve Farkas, and Tom Loveless, “low achieving students receive dramatically more attention from teachers. Asked ‘Who is most likely to get one on one attention from teachers?’ 81 percent of teachers named ‘struggling students’ while only 5 percent named ‘advanced students.’” (The report compared the performance of the 10th and 90th percentile on the NAEP from 2000-2007).

The fact that a perception is widespread does not make it true. Despite what many parents, teachers and administrators may believe, most school districts do not, in fact, meet the needs of gifted students.

A genetic perspective on ASD: What happens when 2 geeks have kids?

2009-10-10T16:40:00.005-05:00

It's nice to see someone other than my mother and I discussing the possibility that geek + geek might = ASD.

This quote says it all.

What Dan Geschwind, director of the neurogenetics lab at UCLA, finds fascinating about dyslexia and autism is what they suggest about human intelligence: that certain kinds of excellence might require not just various modes of thinking, but different kinds of brains.

"Autism gets to fundamental issues of how we view talents and disabilities," he says. The flip side of dyslexia is enhanced abilities in math and architecture. There may be an aspect of this going on with autism and assortative mating in places like Silicon Valley. In the parents, who carry a few of the genes, they're a good thing. In the kids, who carry too many, it's very bad."

What do we make of the parents, whose difficulties make them eccentric and sometimes uncomfortable but not dysfunctional?

And what of their kids who don't inherit enough of these genes to cause full-blown classic autism or Asperger's, but are still noticeably different from the norm--the sorts of kids who get catchall labels like "Nonverbal Learning Disability" or "PDD-NOS"? The sort of kids with social, sensory, pragmatic, and attentional difficulties who also show high empathy and social cognition in some situations, and no stereotyped behavior or need for order? Is there a whole set of genes that lead to problems in non-academic areas, with fully "autistic" kids getting the whole set, dyspraxic or SPD kids getting particular subsets, and uncategorizable kids getting some odd, random mix? If so, would we see an increase in generalized nonverbal learning disabilities along wih the rise in autism?

The ripple effects of missing sensory input

2009-09-16T10:07:00.004-05:00

Sensory perception is about more than just knowing facts about your environment. As the bottom-level source of information, it pervades just about every function our mind performs. It affects one's emotions, ability to reason about real-world and academic situations, and sense of self. Yet it's hard to see how crucial sensory perception is until something goes wrong.

A New York Times article illustrates the ripple effects that occur when people are cut off from relevant sensory perception. Some of the US military's pilots and crew for Predator drones aren't deployed to Afghanistan or Iraq. Instead, they pilot their drones remotely from an Air Force base. They also don't perform takeoffs and landings, which are handled overseas. It would seem like these pilots get a great deal. They can avoid the danger and stress of overseas combat. So they should be less fatigued and burned out than pilots in Iraq and Afghanistan, right?

Wrong. Remotely operating crews had "significantly increased fatigue, emotional exhaustion and burnout" compared to crews with a pilot on board. The Air Force implemented a new shift system, giving more days off, with no improvement. Teleoperating crews had a "pervasive problem with chronic fatigue" to the point where it could "be expected to adversely impact job performance and safety," and they also had "impaired domestic relationships."

It turns out that remote flying is confusing and mentally exhausting because pilots are missing a lot of the sensory cues that pilots get when they're actually in their planes. While they get visuals from cameras mounted on the planes, they lack cues from their sense of touch and place. Out of 95 Predator "mishaps and safety incidents" reported to the Air Force over an eight-year period, 57% of crew-related mishaps were "consistent with situation awareness errors associated with perception of the environment." Or as the New York Times puts it: "it's hard to grasp your environment when you're not actually in it."

Most people, of course, aren't so cut off from relevant sensory information. But what about people whose eyes and ears function fine, but whose brains don't provide them with accurate information about the location of their bodies in space and in relation to other objects in their environment? Would they experience a milder version of the stress, confusion, exhaustion, and errors that these Air Force pilots did? If so, could this New York Times article help parents, teachers, colleagues, and friends understand what these people experience?

Where does social cognition break down?

2009-09-02T11:15:00.002-05:00

I don't normally follow social and family dynamics psychology, but there's some research there that has interesting implications for understanding kids on the autistic spectrum better.

Researchers on aggressive children have identified a series of steps in social information processing. These steps include a) encoding social cues from the enviroment, b) interpreting this social information, c) clarifying goals, d) constructing possible responses, e) making a response decision, and f) enacting that social behavior.

The first step, encoding social cues, might include noticing a friend's quick frown and abrupt gesture. In the next step, the child tries to interpret this social information. Is my friend angry? At me, or at someone else? Preoccupied and not wanting to be distracted? Sad? Frustrated? Impatient? Wanting to be alone, or wanting to be comforted? The child draws on a huge body of contextual knowledge, general and specific: what has this friend done in the past? What do these gestures mean in general? For children his age? What was just happening in the immediate interaction that might be causing the friend's behavior? What's happening in the friend's life in general that might be causing it? A staggering amount of information gets processed here, very quickly. During the next step clarifying goals, the child decides what he or she wants from the interaction. Does he or she want to comfort the friend, play with the friend, not deal with the friend's problems? Does he like the friend that much at all? Maybe she'd become more popular if she snubbed the friend--how important is that to her, relative to the friendship?

Next, the child considers possible responses based on all this information. She might choose to try to comfort the friend, distract him by suggesting a game, snub him and go play with someone else, ignore the gesture and keep the conversation going as before, or ask the friend how he's feeling. Next, the child actually picks a response. In the process, he has to predict the consequences of each of these responses: if I try to comfort my friend, will that make her feel better or make her push me away? If I snub him and go play with someone else to be more popular, will I feel guilty?

Finally, the child has to enact the social behavior, choosing the right words, body language, and intonation or the wrong ones. The same social behavior, in the same social situation, could be enacted gracefully or clumsily, leading to very different consequences.

The reason researchers on aggressive kids break down social cognition so finely is that aggressive children seem to show abnormalities on at least one of these stages. For instance, their interpretations (stage 2) are more likely to be negative than other kids'; they're more likely to interpret ambiguous social behavior as hostile. They may also be biased towards aggressive behavior at the response decision step, because they feel more confident with their ability to carry out an aggressive action than an acceptable one.

But this typology has far greater significance than this. We've seen that problems with understanding others' behavior and feelings can mean many different things, leading to people with very different cognitive profiles being lumped together as ASD. A fine-grained model like this could help researchers study each link in the chain, and could help clinicians better understand where kids are having problems and target their interventions more precisely. If we can import this model into research on ASD, we could have a much clearer understanding of what it means to understand others--and why so many of us fail.

What should we be telling teens with ASD about social skills?

2009-08-24T11:25:00.004-05:00

How do you explain the finer points of social skills to kids on the autistic spectrum?

It's not just that it's hard to codify it all into rules. A lot of it--especially with middle school kids-- doesn't make sense, and shouldn't make sense even to neurotypical people, even though they take it for granted. Here's an example of what I mean, which I observed when I was in middle school.

A group of sixth graders are in their English classroom waiting for the teacher to arrive. A tall, popular girl climbs up on a desk and starts disco-dancing, while everyone gathers around the table to watch. Dancing on tables just isn't cool, and normally a middle schooler wouldn't be caught dead doing it. But no one makes fun of her or gives her strange looks. Some laugh, while others go on talking to her as if she were just sitting at her desk.

A few tables away sits a short boy with a round face that looks perpetually puzzled and afraid. He doesn't have any friends at this school yet. Seeing all the attention this girl is getting, he stands up on his own desk and, smiling maybe a little too broadly, starts disco-dancing, too. A few people give him odd looks, but most people just ignore him. He sits down a minute later.

This story turns the usual idea about social skills on its head. The usual idea is that what makes kids popular is that they don't do awkward, weird, or geeky things. For instance, they don't get up and disco dance on tables for no apparent reason. That's for the not-so-popular kids. So we normally tell aspie kids things like, "don't dance on tables and people will want to be friends with you." But here, the popular kid and the not-so-popular kid are doing the exact same thing, and are treated very differently. What makes it okay for this girl to do it, but not the boy? Yes, there are differences in body language.* But it all comes down to the reasons for the body language differences: she already has friends and is accepted, while he doesn't, and isn't. But how was she able to get and maintain friends if she does awkward things like that? And why is the same behavior okay for popular people but not for unpopular ones?

Try explaining all that to an aspie kid.

Now try explaining to the aspie kid why he should accept an unjust system like this, where what you can or can't do is determined by who you are, not by whether your actions are good or bad. Can you explain to them that they should try to fit into that without flinching? I know I'd have qualms about trying to get my kid to fit into a situation with built-in double standards. Neurotypical people take stuff like this for granted, but maybe they shouldn't.

*Yes, I'm aware that the girl did it first, while the boy was obviously copying her to get attention. The girl had confident body language while the boy did not. Aren't we still left telling aspie kids--"don't dance on tables because you'll just do it wrong and make yourself look bad, but it's ok for other people, because they do it the right way?" How are they supposed to respect us if we give them advice like that? Or perhaps we should teach them the non-awkward way to dance on tables (so to speak). But how on earth do we do that?

Auditory-visual synchrony could explain why kids with ASD prefer mouths to eyes

2009-08-12T14:59:00.004-05:00

Ever wondered why sensory integration problems often go along with ASD? It may not be a coincidence.

Specifically, a recent study* suggests that sensory integration problems could cause young children to look at mouths rather than eyes, which in turn causes them to miss important social cues and fall behind in social development.

The study found that 2 year olds with ASD are strongly attracted to an exact match between motion and sound. The researchers started out with a standard design often used in research on face processing. They showed kids right-side-up and reversed, upside-down cartoons. Children and adults respond differently to inverted faces, which engage different brain circuits. An actor's voice, recorded when the animations were made, accompanied the presentations. The 2 animations were presented side by side, and researchers tracked the direction of children's gaze to determine which they preferred (based on looking time). Neurotypical and developmentally disabled kids without ASD not surprisingly preferred the upright animations, but toddlers with ASD showed no preference for the upright cartoons.

They did, however, strongly prefer the right-side-up animation in one case. The cartoon showed an upright figure clapping its hands during a game of pat-a-cake. The movement of the cartoon and the sound of the clapping were only in sync on the right-side-up animation. So the researchers redid their study and stimuli to see if they could find a consistent preference for visual-auditory synchrony in the ASD toddlers--and they did.

"Audio-visual synchronies accounted for about 90 percent of the preferred viewing patterns of toddlers with ASD and none of unaffected toddlers," said Jones. "Typically-developing children focused instead on the most socially relevant information."

Lip motion synchronizes with speech sound, while eye motion does not. Thus, children with ASD have a very good reason to be drawn to mouths instead of eyes.

Notice that this explanation does not propose that kids don't respond to or can't process eyes, just that they are much more drawn to mouths. This could explain why kids with ASD will look at eyes when cued to do so--there's no damage to eye viewing, just a preference for looking at mouths, which can be overcome at least temporarily through training.

Why would auditory-visual synchrony matter so much to the ASD kids? Perhaps they have trouble syncing up auditory and visual input on their own, so they seek that out in their environment. Neurotypical kids can sync up auditory and visual input on their own, allowing them to pay attention to social cues.

In other words: what might be going on here is an auditory-visual integration problem. We could test this hypothesis by repeating the experiment, only this time comparing ASD kids and neurotypical ones to kids with sensory integration disorders.

Integration per se wouldn't have to be the problem, though. Integration might make it easier for ASD kids to use one sense to make up for another. Most likely, they use auditory information to disambiguate visual input. We've seen a study suggesting that kids with ASD have trouble perceiving a gesture as a coherent motion. Importantly, kids were shown video clips without accompanying sound. Kids were then unable to use sound to sort out what they were seeing.

It's not surprising that kids with ASD look at bodies more than faces. People make noise as they move, and their movements are synchronized with this noise. There's a lot more opportunities for synchrony in the whole body than there is in the mouth alone. This holds true whether kids with ASD have an integration problem or a visual problem, but it'd happen differently. If they have an integration problem, they're seeing the gesture and hearing the sound at the same time, forcing them to integrate. If they have a visual problem, the sound allows them to see the gesture.

*Klin A, Lin DJ, Gorrindo P, Ramsay G, Jones W. Two-year-olds with autism fail to orient toward human biological motion but attend instead to non-social physical contingencies. Nature, Mar 29, 2009

ASD and Dyspraxia: What's the deal?

2009-08-12T11:53:00.004-05:00

One fact that particularly interests me about ASD: it's often associated with dyspraxia. (According to LDOnline, "dyspraxia" means "a specific disorder in the area of motor skill development. People with dyspraxia have difficulty planning and completing intended fine motor tasks." I'm not sure why they only mention fine motor tasks; maybe these are more easily separable from problems based more in the body than the brain, or maybe they're just more severe).

For instance, Dr. Minshew found that many of the ASD kids in her study were dyspraxic. "The children with autism either had poor handwriting, or wrote very slowly. Many had difficulty tying their shoes and with using scissors."

Two studies investigated motor behavior and motor learning in ASD kids. Both studies interpreted their results as showing that children with ASD have less connectivity between brain regions overall. Furthermore, the greater the distance between regions, the less connectivity they have. (This suggests an abnormal, immature pattern of brain development. Normally, development strengthens connections between distant regions to create complex functional networks and weakens connections between neighboring regions to create more specialized, nuanced processing).

I find the results particularly interesting because I've known people who have similar motor behavior and motor learning to the ASD kids in these studies for most of my life, but have never been diagnosed with ASD, and lack a lot of the social and social language symptoms. I've usually interpreted these difficulties as problems with sensory processing and with sensory-motor connections (i.e., the ability to act on what one perceives). So as I examine the results, I ask: are these symptoms caused by developmental connectivity differences? Are they caused by sensory processing and sensorimotor differences? Are they caused by the first in ASD and the second in whatever weird agglomeration of issues these people seem to have? Are they caused by the first in some types of ASD and by the second in other types (since after all, ASD is a family of disorders)?

Motor Execution in High-Functioning ASD
For most people, tapping the fingers in sequence is the most natural thing in the world. We do it while typing or playing piano or a stringed instrument, and most of us do it when bored. But it isn't quite so simple for children with ASD. While neurotypical kids use the cerebellum, a "reptilian" brain region associated with automated motion, ASD kids rely more on the supplementary motor area, a region of the brain responsible for conscious, effortful movement.

“Tapping your fingers is a simple action, but it involves communication and coordination between several regions of the brain,” points out Dr. Stewart H. Mostofsky, the senior author of the study. Researchers compared the functional connectivity of the brain regions involved in motor planning and execution in typical and ASD kids. The children with ASD showed much less connectivity between these regions.

Mostofsky thinks that ASD kids are using the supplementary motor area in order to bypass their less-connected motor systems. He points out that the areas involved in motor tasks are fairly close together. Social and communication skills involve much more far-flung brain areas, coordinated in much more complex ways. So it's not surprising that kids with ASD would have weaknesses here.

As fascinating as the connectivity issue is, I'm more interested in the fact that ASD kids process consciously where most kids automate. This is true for social skills, too--what most people do automatically, they do by consciously following rules. (This is why there's a much higher correlation between IQ and social skills among ASD kids than there is among neurotypical ones. The study's at home, so citation will be added later).

This study looked at high-functioning ASD kids. Maybe the use of more-conscious areas is about more than just covering up weakness (poorly-connected lower areas). Maybe their more-conscious areas are actually a strength for them (relative to the norm), giving them an advantage in academic areas? Maybe people like Adam are excellent at social skills after the fact but not in the moment because their more-conscious processing takes too long to be helpful in the moment, but lets them use their cognitive strengths to understand what's going on later? Maybe, in other words, there's a strength explanation as well as a weakness explanation. Does the weakness cause the strength, as Mostofsky assumes, or does the strength cause the weakness (i.e., overreliance on strong brain areas causes the brain to invest less effort in developing others, thus causing a weakness to develop?)

Motor Learning in ASD
In another study in which Mostofsky was involved, researchers compared the movements of autistic and neurotypical kids as they learned to control a novel tool, and discovered that autistic kids seem to learn new actions differently than neurotypical ones.

"As compared to their typically developing peers, children with autism relied much more on their own internal sense of body position (proprioception), rather than visual information coming from the external world to learn new patterns of movement. Furthermore, researchers found that the greater the reliance on proprioception, the greater the child’s impairment in social skills, motor skills and imitation."

(It seems counterintuitive to me that proprioception should be associated with poorer motor skills, as we use proprioception to position our bodies and intuitively understand what a movement should "feel like.")

Researchers believe that, in opposition to the normal pattern of brain development, short-range connections between neighboring brain regions are overdeveloped and longer-distance connections are underdeveloped. Proprioceptive areas are close to motor areas, while visual-motor processing is father away. So kids with ASD use less-effective proprioceptive areas to guide their actions because their visual-motor and motor areas can't communicate effectively.

Notice, though, that the earlier study of motor behavior suggested that nearby areas with the same function were underdeveloped, not overdeveloped. Do we have a contradiction here, or is the pattern a little more nuanced than the articles report?

The researchers drew these conclusions because a lot of studies show abnormal connectivity in people with ASD. But it's also possible that these kids with ASD have poor visual-motor processing and are using proprioception to compensate.

How might this work?

As a child, Diana took violin, ballet, and tap lessons. At her violin lessons, she had trouble imitating her teacher's movements. She could succeed either when instructed verbally in detail or when the teacher physically moved her arms and hands into the proper position. Her mother (who observed her lessons) and I both believe that a visual processing problem was involved here. She had trouble sifting through the large amounts of visual data bombarding her to find the particular information she needed to copy a movement, which was why verbal instructions helped: they allowed her to focus on only the relevant visual details.

But verbal instructions only let her follow the teacher's instructions while he was present. They didn't give her feedback on the correctness of her movements when was practicing at home. Being moved into position, on the other hand, allowed her to feel exactly what she would feel every time she made the movement, allowing her to self-check-up. Thus, it was the most effective way for her to learn.

Ballet (ages 4-9 or 10) and tap (apx. ages 8-10) gave her more problems, which is why she eventually quit. When Diana danced freeform to "the music in her head," people remarked on her grace and expression, so she didn't have a problem with motor coordination per se. But when she actually tried to do what her teacher and classmates were doing in class, she would often do it backward, and she was a lot slower than they were. Diana could answer correctly if you asked her which was her right and which was her left, but when she actually had to move, mirrors confused her, and she'd move left while everyone else was moving right (and vice versa). She didn't have that proprioceptive input--the teacher moving her body into position--and she didn't get individualized verbal input, so she never really figured out what she was doing.

Sounds a lot like visual processing problems and specifically visual-motor coordination problems, plus issues with mirror reversals, doesn't it?

Where Does This Leave Us?

These 2 studies raise the following questions:

Why do so many people with ASD experience dyspraxia?
Where does someone like Diana, a person without ASD but with dyspraxia, fit into this?

The answers remain unresolved. But to recap, here are some options:

Dyspraxia in ASD is caused by abnormal connectivity patterns.
Dyspraxia in ASD is caused by areas of strength creating areas of weakness.
Dyspraxia in ASD is caused by visual-processing and specific visual-motor coordination problems.
There are at least 3 types of ASD with dyspraxia, caused by abnormal connectivity patterns; areas of strength creating areas of weakness; and visual-processing & visual-motor problems, respectively.
People with ASD and people without ASD can have dyspraxia for different ones of these reasons. For instance, people with ASD might have dyspraxia caused by abnormal connectivity and/or areas of strength creating areas of weakness, while people without ASD could have dyspraxia caused by visual-processing & visual-motor problems (and maybe also areas of strength creating areas of weakness).
People with ASD and people without ASD can have dyspraxia for the same reasons. It's not a symptom of ASD that's also an independent disorder. It's an independent disorder that just happens to coexist with ASD a lot (maybe because they're caused by problems with the same gene).

Localizing ASD: Locus Coeruleus Links Sensory Processing, Cognition, Attention, & Fight or Flight Systems

2009-08-12T10:36:00.003-05:00

I've read a number of studies that attempt to localize ASD in the brain, and none of them thrill me. They focus on a couple of symptoms, such as face reading deficits or problems understanding other's behavior. They make sweeping statements like "such and such wiring problem seems to cause ASD" when they fail to even address how, say, face reading deficits would cause pragmatic language issues or obsessive and narrow interests. They just seem to assume that, once you explain the social skills issues, everything else falls into place.

ASD involves problems with sensory processing, social cognition and interpretation, social language, and narrow, obsessive interests. Thus, cognitive, sensory, and probably attention and executive systems are likely involved in ASD. These systems are all connected, but they're also dissociable. So, if you're going to localize ASD, you have to find some brain region that communicates with, and affects, all of these.

Amazingly, someone has actually done this. Mark Mehler and Dominick Purpura actually paid attention to decades of anecdotal observations showing that some autistic kids seem to improve when they have a fever, but relapse to normal when the fever ends. Only one brain system is involved both in producing fever and controlling behavior: the LC-NA system.

The LC-NA system has its roots in the locus coeruleus, a bundle of neurons in the brain stem that are more widely connected than any other neurons in the brain. Here are some too-perfect properties of the LC-NA system...

It has "widespread connections to brain regions that process sensory information," taking in "sensory signals from all areas of the body."
In fact, the more connected the LC-NA system is to certain visual areas, the better a person is at "global visual spatial analysis and elaboration of visuomotor responses," as opposed to an autistic person's "greater focus on stimulus feature extraction and pattern analysis." To unpack the jargon: a neurotypical person's LC-NA system seems to be involved in global visual processing. It's also involved in exactly what Lily has trouble doing: acting on visual stimuli. We've already seen that people with ASD are biased towards local rather than global processing, although it's not clear yet exactly what this means.
"It secrets most of the brain's noradrenaline, a neurotransmitted that plays a key role in arousal mechanisms, such as the 'fight or flight' response." (Fight or flight responses are common in Asperger's syndrome. Adam was considered a "problem child" at several schools because, frightened by a social world that seemed hostile and senseless, he continually went into fight-or-flight mode).
The "preeminent role of the LC-NA system in arousal and attention" has been known for a while. Differences in attention combined with sensory processing likely produces caetextia, or context-blindness, in people with ASD.
Not only does the LC connect with these more basic, earlier-evolved brain areas, but it also "activates almost all higher-order brain centers that are involved in complex cognitive tasks," Dr. Mehler says. (This finding recalls a study suggesting that complex tasks are a problem for kids and adults with ASD. While they succeeded at simple cognitive and perceptual tasks involving only one area of the brain, they "had difficulty performing certain complex tasks that involved brain areas working together.")

Mehler and Purpura emphasize that there is no actual damage to the LC-NA system in ASD kids. Instead, the locus coeruleus activates a lot less than it's supposed to, probably because of genetic abnormalities. Fever temporarily helps people with ASD because the LC activates a lot more during a fever, and this activation seems to spread throughout the LC-NA system to connected areas. That there is no damage, and the LC-NA system can be reactivated in some cases, shows that ASD is reversible and treatable.

These researchers propose studying the tens, hundreds or thousands of genes that impair LC activation in people with ASD. I think that's a great idea. But if the problem is with activation, I wouldn't be surprised if we start seeing therapies that electrically stimulate the LC. It'll be a while before we understand the genetics of the LC-NA, but I think we have the knowledge and technology to stimulate it now.

Why do gifted people seem so weird?: It might not be what you think

2009-08-10T12:32:00.002-05:00

I once asked one of my friends, who was labeled gifted and went to a school for gifted students for a few years, why gifted people were so "weird." He gave me what I will call the "orthodox theory of giftedness." I call it this because it's an unquestioned assumption thrown around by many members of the gifted community. I don't think it's necessarily a bad assumption, but I do want to question it.

The theory goes as follows:

There are a number of traits associated with giftedness whose connection with intelligence seems tenuous, at best: creativity, great emotional depth and intensity, keener senses, unusual sense of humor, unusual and almost obsessive interests, etc. These are the traits that make gifted people seem weird. And all of these traits stem from a higher-than-average intelligence.

In other words, gifted people come off as "weird" because they think differently and they think differently because they're smarter.

But why would having a higher IQ necessarily make one think differently? It might, if higher IQ reflects greater problem-solving ability, greater ability to see abstract relationships, or other cognitive skills that are qualitatively different. But high IQ might reflect a quantitative rather than qualitative difference. Maybe gifted people just have "higher processing power:" they think in the same way everyone else does, but they do it faster and more efficiently. Maybe their brains do the same things everyone else's brains do, only better. In which case, being gifted wouldn't make you act "weird." It would just make you better at a debatably wide range of intellectual tasks (depending on whether you subscribe to a general intelligence theory or a multiple intelligences view). It would not produce the divergent thinking and greater intensity and sensitivity many gifted people exhibit.

My experience with gifted people leads me to believe that high IQ reflects both a quantitative and a qualitative difference. Gifted people have more processing power, but they also process things differently. I don't know if one causes the other. Maybe they process things differently because they have more processing power or--more likely, in my view--they can process better because they process differently.

I don't think I agree with the orthodox theory, but at the very least, we need more evidence before we adopt it wholesale. I doubt we should completely dismantle the orthodox theory, but I do think it needs to be questioned and tested--expecially by advocates for the gifted.

Social cognition problems when acting, but not when observing: Lily's story

2009-08-10T10:41:00.005-05:00

I've long known a girl named Lily. I first met her in sixth grade, when she stopped homeschooling and came to my small, private school. She has never been diagnosed with an autistic spectrum disorder, and probably does not have one. But she is definitely closer to that side of the continuum than the neurotypical end.

Lily had spent her childhood either interacting with adults or playing with other children one-on-one. She preferred reading books to watching TV. As a result, although friendly and outgoing, she had no idea how to interact with others within the classroom environment. When she sat with other children at lunch, she would break the flow of conversation to make puns that they didn't get and not understand why everyone was staring at her. It didn't help that she talked like she had swallowed a dictionary and that--because she didn't watch TV--she knew almost nothing about popular culture (and often seemed bored by it). She was shunned by the girls she wanted to befriend and forced to sit with the geeky boys.

Lily quickly realized that she wasn't making any friends and that there were social norms she wasn't getting. I later found out that she consciously decided to learn what everyone else was doing and do it, too. Often a keen observer, she tuned in and quickly discovered a set of rules. Don't make jokes that other people don't understand. Use smaller words and put more breaks in your speech--don't talk formally or fluently. Compliment people on what they're wearing. Ask them more questions. Figure out what the conversation is about before you try to join in. Don't talk too loud or laugh too loud. And, later--avoid "geeky" topics like academic interests, your ideas about the meaning of life, fanfiction, anime, or video games, unless you know it's safe. Lily learned the rules both by closely observing people who had a lot of friends and by seeing why other people were shunned, often more cruelly than she was. She internalized these rules so deeply that by eighth grade, they felt like an "invisible current" dictating everything she did and "pushing" her to do things she didn't necessarily want to do, because she would feel everyone's disapproval if she did not obey them.

Lily never became friends with most of the people in her class, but she was accepted and treated with polite indifference by most. She became friends with a girl who helped her realize that the geeky boy's group to which they were both relegated were her real friends. They formed a close-knit group of misfits and weirdos of the sort you find in every junior high and high school.

In high school, Lily consistently found that her friends did socially unacceptable things far more than she did. Lily cared a lot about getting along with other people, and, knowing that most people did not understand and accept her for who she was, she responded by being quiet and saying only what she thought was safe. Her friends were a lot louder and, generally speaking, truer to themselves. Lily discovered she could tell immediately when her friends were committing a social faux pas. When her friend talked in a decibels-too-loud voice about Harry Potter fanfiction, drawing irritated looks from everyone in the hallway, it made her wince. When her bull-in-a-china-shop male friends left a mess all over her house and tried to edit the settings on her mother's computer (without a clue how rude their behavior was), she noticed and was embarrassed for them. A friend of hers walked funny, scuffing his feet strangely along the ground, and another bounced on the balls of his feet. A close friend of hers talked in an odd voice, with poor enunciation and odd breaks in the sentences, and while it did not bother her, it bothered her that she could see other people's reactions to it. Lily wondered if she was a disloyal friend.

But more than that, she noticed: she still had no idea how other people perceived her. The keener her perceptions of other people, the more she realized she had no idea what her body language, the tone of her voice, her dress or her choice of words said to people. She had consciously adapted the strategy of assuming the worst, which left her prone to depression, and she knew it wasn't the best solution, but she had no idea what else to do. Being polite, cheerful, and well-mannered, she rarely provoked cruelty from others, but she continued to have trouble making friends her own age, for reasons she did not understand.

Lily was a poor driver because she was slow to perceive large amounts of motion coming at her and determining a response. After a couple of close calls, she avoided driving as much as possible and went to college in a city where she could walk or take public transportation most places she needed to go. Lily was given poor reviews at a retail job she worked in high school. As a barista in a fast-paced store with lots of business, she could not seem to make the drinks quickly enough or move quickly between tasks such as cleaning the store and serving customers. When someone insulted Lily and she was forced to make a response, she froze up, trying to figure out the best response, and wouldn't think of an appropriate comeback until long after the fact. Lily was forever calling people back or sending up follow-up emails because of something she "didn't think of at the time" that turned out to be crucially important. She prefers email to phone conversations because it gives her more time to think about what she wants to say.

Lily is aware of her difficulties. She sees herself as the "eternal observer," in both the good senses (she likes noticing small details and talking and writing about them), and the bad senses (she feels she has trouble making decisions and acting on them).

People have suspected Lily has visual processing problems and that she tunes out her visual environment to focus on her thoughts. While this is true to some degree, she has a highly-developed aesthetic sense and is always pointing out features of the sky, trees, or buildings that those around her do not notice. Similarly, processing motion only seems to cause her problems when she has to navigate it, whether she's crossing the street or moving through a crowded mall. Visual processing problems per se are not the issue for her. Instead, she seems to have a problem with the link between perception and action.

I would argue that there are 3 levels of social ability that people with nonverbal learning disabilities can lack. The most basic is contemplating social behavior and other people's response to you, not in real time. This can occur when reading about characters, or when thinking about real acquaintances not currently present. Adam, for instance, is quite good at this, which is why he can talk intelligently about the psychology of characters in Pride and Prejudice. The midpoint is the ability to understand social behavior and other people's response to you in real time, but not feel personally involved and not have to act on it. Lily demonstrated this ability when she was embarrassed by her friends' social faux pas. Adam has some trouble with this. The 3rd, most difficult skill is being able to understand social behavior and other people's response to you in real time, when you are intimately involved and forced to act on it. This is where Lily falls apart. She can't represent herself in her physical and social situation in real time and act accordingly. The processing involved seems to overwhelm her, and she shuts down.

This 3 point continuum can explain the deficits of a lot of high-functioning ASD or ASD-like people like Adam or Lily. One of the influential theories of ASD is that people with it have a poor theory of mind. I'd argue that for people like Adam and Lily, who are empathetic and often think about other people's thoughts and motivations, theory of mind is intact-to-good. Anyone who can accomplish the most basic level probably has normal theory of mind. The problem is when they have to deal with 1) the pressure of processing in real-time (Adam), or 2) the pressure of being an actor in the scene (Adam and Lily).

The severity of a nonverbal learning disability might depend on where they fall on this continuum. Lily seems higher-functioning than Adam because she can process better in real-time. Neurotypical people outpace both of them because they can act in real time without difficulty.

I can't overemphasize the importance of acting. The difference between being an actor in a social situation and simply observing it is the difference between watching a movie and acting in the movie. The processing demands alone increase exponentially when you are forced to act. You have to view yourself from the outside (something someone like Lily has trouble doing), situate yourself in a 3-dimensional world, process your options for speaking and moving, consider other's possible responses, and then act--all in a matter of seconds. I think there may be more to Lily's difficulties than just processing demands, however. My guess would be that perceiving and acting (with all its self-representations) use many of the same brain areas, but are independent networks that can be separated by imaging the brain. My guess would be that Lily has an intact perceiving network, but her acting network is significantly impaired.

Perhaps ASD symptoms can stem from either a faulty perceiving network, a faulty acting network, or both.* The future of understanding and helping high-functioning people like Adam and Lily might come from researching these networks, more than from research on theory of mind.

*They may also have additional, more general sensory processing problems, which can interact and make things worse, but that's an extra complication.)

Piaget's conservation of matter task with water: Is it on the "level?"

2009-08-10T10:12:00.005-05:00

Warning: I'm about to question one of developmental psychology's sacred cows.

It amazes me sometimes how influential Piaget still is, and how much he is still believed. He's still taught in my psychology classes, with caveats such as "we now know that children don't reach the same level at all different sorts of tasks at the same time," and "children move up to the next level on any task more gradually than Piaget thinks," and "children can reach xyz level a few years earlier than Piaget thought." Sometimes it seems like developmental psychology is just tweaked Piaget (even though I know that's a gross exaggeration)*. But has anyone actually looked at his famous tasks and asked whether they actually measure what everyone thinks they do?

For instance, a task of water level is often used to assess children's understanding of conservation of matter at different ages. In this task, two identical beakers are filled with the same amount of liquid. Children are asked which has more water, and respond correctly that they contain the same amount of water. When one of the beakers is emptied into a taller and thinner container, the water level appears higher. Children are again asked which has more. Before a certain age, children respond that the taller, thinner vessel has more liquid, while older children say that the amount of water remains the same. Researchers conclude that the younger children do not understand the concept of conservation of matter.

There's another possibility that seems fairly obvious, though I've never heard it mentioned. Like other everyday words, "more" has ambiguous meanings. "More" is used to describe both things that take up a larger perceptual space--like water in a tall, thin beaker, or a widely spread display of objects--and larger absolute quantities, regardless of the space they take up. The difficulty is that in most cases, larger absolute quantities take up a larger perceptual space, so it may be hard for children to know which concept the word actually means, and they may erroneously choose the larger perceptual-space meaning because it generally applies. They don't yet have enough life experience to see a lot of examples of large quantities of objects that take up a smaller perceptual space referred to as "more," so they don't realize that the experimenter really means a larger quantity. With more conversational experience, they sort out this ambiguity of usage and learn that the "real" meaning of "more" is a larger absolute quantity.

(Furthermore, I would point out that researchers might artificially bias children to give the wrong answer by first showing the identical beakers with the same water height and asking which has more. This might prime children to pay attention to the height of the water (after all, it's hard to pour evenly, so a child might rarely see two containers with exactly the same water level). Thus, they're more likely to think that the experimenter wants them to talk about the height of the water, and answer accordingly. As they get older and their executive functioning develops, they may be better able to avoid this trap and inhibit this priming).

In other words, I submit that the Piaget task, with its ambiguous wording, could as easily test a child's pragmatic language/interpretation skills as his or her concept of conservation of matter, and we need some way of separating these two variables.

Piaget's methodology involved asking children questions and recording their answers. While this method can be very powerful for eliciting children's thoughts, it can also bias them. As both common sense and experimental evidence indicate, children often want to please the experimenter and do what he or she expects of them. So it's important to pay as close attention to the questions as to the answers. It'd be interesting to know how many of Piaget's other experiments, in his own time and today, fall prey to the same basic problem as the water-level-conservation task.

*Please let me know if I have somehow misrepresented Piaget's research (or his influence today). I haven't read a lot of the neoPiagetian stuff, so it's quite possible I've missed something, or my complaints have been addressed somewhere.

Beyond Checklists: How would you diagnose this child (or would you at all)?

2009-08-06T12:50:00.005-05:00

Here's an example of why crossing symptoms off a checklist is inadequate in diagnosing and labeling kids.

When Jessie was four or five, whenever she went to a new place, she always touched everything. Her mother was afraid to take her to any store with breakable items, because no matter what she said, Jessie reported that she "couldn't help" touching everything that looked interesting to her. (Thankfully, Jessie never broke anything). Jessie's piano teacher's desk and walls were crowded with toys and posters, and Jessie could not focus on what her teacher said until she had touched most of the objects in the room. Jessie liked the feel of squishy mud, and set up a "mud bakery" in her backyard, making mud "cakes" and "cookies" as well as the usual "mud pies." Her teachers told her bemused mother that they could not seem to stop Jessie from splashing in puddles while wearing a nice dress (her mother was used to this, and didn't really care). Jessie was a cuddly child and hugged everyone, especially when she had to say goodbye (as an adult, she is still this way with her family and a few other people she trusts). As a child, Jessie loved pulling her blankets tight around her and all the way up to her chin, associating it with the feeling of being a bird, safe and high up in her nest. She still sleeps better this way. Far from being claustrophobic, she actually likes small spaces and the feeling of being enclosed. For instance, she enjoyed being in an MRI as an adult and was so relaxed she almost fell asleep inside.

In some respects, Jessie was far from the canonical "sensory-seeking" child. She had terrible balance and avoided fast-spinning, fast-moving amusement park rides or playground equipment. Unlike the typical tactile hyposensitive kid, she seemed to have good control over how strongly she touched things, and was very gentle with animals and babies.

As an adult, Jessie has long since stopped touching everything. But she still gets a lot of enjoyment from the sense of touch.

Time for a pop quiz. Is Jessie a) tactile hyposensitive, b) highly tactile-sensitive, but gets pleasure rather than discomfort from the sense of touch? c) uses tactile sense to compensate for visual overstimulation? d) both b and c? e) ADHD, or at least highly impulsive? f) Some other combination? g) something else? or h) sounds like a perfectly normal child, stop applying labels to her?

Much of Jessie's tactile behavior matches the profile of a tactile hyposensitive that you get on behavioral checklists. My opinion is that d is actually the case, but e, f, and h could all describe her as well. This is a perfect example of how behaviors can mean multiple things, are more complex than is usually thought, and should be evaluated based on the overall context of their behavior.

Visual processing problems on the autistic spectrum disorder: what are they, anyway?

2009-08-06T11:37:00.004-05:00

I discovered yesterday that there are a large number of people investigating how sensory processing problems contribute to ASD--and specifically, how people on the spectrum tend to be more detail-oriented rather than globally/holistically-oriented. My first reactions: 1) Wow, that's so cool, people are actually studying this! 2) Looks like there's a lot of evidence supporting my hypotheses. Cool! Then I started really looking at the results of these studies.

This shouldn't have surprised me, but it turns out that "not seeing the forest for the trees" can mean a lot of different things, and the implications are very different. (Just like "difficulty understanding other people's mental states" can mean a lot of different things, with different implications). A few entries ago, I raised the possibility that people on the autistic spectrum might be detail-oriented in the sense that they literally do not see a context, only a set of details. They see so many details that scanning becomes impossible. My prediction, in other words, was that at least some ASD people might function like Dr. Gray. One could interpret the body language study as confirming this by showing that ASD people are seeing a lot of separate motions of different parts of the body rather than one coherent, meaningful gesture.

The problem is that some of the studies that are supposed to support ASD people's detail-centric processing suggest that ASD people are phenomenal scanners. O'Riordan et al1 gave neurotypical kids and kids with ASD two classic psychology tasks: a "feature search" task and a "conjunction search" task. (Those of you who know what these are should skip to the next paragraph). A "feature search" is when people are asked to find one object in a set that differs in only one important characteristic. For instance, one might be asked to find a green square in a set of red squares, or a green square in a set of green circles. A "conjunction search" is when multiple traits are present that could be shared by the object you're trying to find. One might be asked to find a red circle among red squares and green circles, for instance. For most people, the different object seems to "pop out" during a feature search. You don't have to look at every single item to find something that is different in only one respect. So neurotypical people take about the same time to do a feature search no matter how many items are in the display. On the other hand, a conjunction search requires one to look at every single item in the display to make sure that it is different in BOTH important respects. Thus, neurotypical people take more time to do the search as the number of items in the display increases. Notice that this task is basically a test of scanning under different degrees of stimulus complexity.

Search tasks like this are one of several common methods that seem to be used to examine the visual perception abilities of kids with ASD. O'Riordan* found the usual pattern for neurotypical kids: basically, feature detection is easy and conjunctive search is hard, with a linear time increase as the number of items increases. Autistic kids performed the same as neurotypical kids on the feature search, but they were significantly faster on the conjunction task. More precisely, "the ASD group was significantly faster than the control group when searching the largest display of 25 items but not when searching 15-item or 5-item displays" (display sizes were 5, 15, and 25 items). A study that cites the O'Riordan study2 says that the ASD group was nearly twice as fast in the 25 item condition!

This means that ASD kids are actually MUCH better scanners than neurotypical kids. That seems to rule out the possibility that ASD kids are hyperfocused Dr. Gray types. These results would seem to suggest that, if ASD kids knew what details to look for in social & practical situations, they would actually pick up meaningful detail much faster (and probably as accurately) as neurotypical kids.

Now wait a second, I thought. Maybe the problem is that these tasks are so circumscribed compared to the real world, which has countless 1000s of meaningful visual stimuli to parse. In this study, the rules of the game were pretty clear (find the one thing that's different), and there were only 2 items in the conjunction. In the real world, the parsing rules are loose or even nonexistent, and rarely stated, while there are literally countless conjoint visual stimuli to sift through. So maybe ASD kids are more skillful in clearly circumscribed tasks where they can put their detail abilities to use, but the real world is just too complex for them.

There's a problem with that interpretation, though. Notice that conjunction searches are more complex than feature searches. So you'd expect that even in the lab, ASD kids would be better at feature searches than neurotypical kids, and worse at conjunction searches--but that's exactly what you don't find.

I think a study would have to be done with much larger numbers of conjoint features in order to clarify the issue. After all, there's a bigger difference between real world-level complexity and lab conjunction searches than there is between conjunction searches and feature searches. But at the very least, the evidence suggests that a scanning problem is unlikely.

As I read more, the question becomes: we might know what it doesn't mean to see the forest for the trees...but what does it mean, and what do the studies actually predict? And is there anything that the studies aren't looking at that maybe they should be? Stay tuned for further thoughts...

*Others seem to have found this too, according to the following overviews of the topic...
Behrman, Marlene, Thomas, Cibu & Humprheys, Kate, Seeing it differently: visual processing in autism. Trends in Cognitive Sciences Volume 10, Issue 6, June 2006, Pages 258-264
Dakin & Frith. Vagaries of Visual Perception in Autism. Neuron, Vol. 48, 497–507, November 3, 2005
1 O'Riordan, Michelle A., Plaisted, Kate C., Driver, Jon, Baron-Cohen, S. Superior visual search in autism. Journal of Experimental Psychology: Human Perception and Performance, 0096-1523, 2001, Vol. 27, Issue 3. O'Riordan also did a follow-up study in 2004, which is next on my list of articles to read.
2 Dakin & Frith. Vagaries of Visual Perception in Autism. Neuron, Vol. 48, 497–507, November 3, 2005

How might sensory processing differences cause classic ASD symptoms?

2009-08-06T09:43:00.005-05:00

Here's a more visual summary of what I've been saying in the last few posts...Notice the emphasis on "in real time." Sensory processing problems affect what inferences one can draw in real time, but do not impair one's ability to think about the same topic later. Thus, sensory processing problems would explain what's going on with high-functioning people like Adam.

Edit: the page formatting seems to be cutting off part of one of the boxes on the right. It says: "difficulty accessing and using any info from context in real time (caetextia)."

High functioning ASD adults show smaller false memory effect: could context blindness be responsible?

2009-08-05T15:12:00.006-05:00

This study is somewhat out of date (2005), and anyone interested is probably already aware of it. But I'm writing about it here because it ties in with a lot of the ideas I've talked about in earlier posts.

This study from Ohio State University supports the "caetextia" theory that high-functioning people with ASD have problems understanding context and using it to draw inferences. Furthermore, that's hard for them in more than just social situations.

"Autistic people usually can't grasp the full meaning, or context, of a situation," [Ashleigh Hillier] said. "This often leads to difficulties in social settings, as making inferences from what someone else says or thinks is extremely difficult for an autistic person."

In an earlier study, Beversdorf and colleagues found that non-autistic adults were more likely than autistic adults to falsely remember hearing a word presented to them in a list of similar words. In 2005, they found that the same was true for images of geometric shapes. Non-autistic adults remembered a "lure" object--similar in shape, size, arrangement, and color to members of the set--as being in the set when it actually was not. Autistic adults were much less likely to make this error.

"This suggests that autistic people may have trouble with using context," Beversdorf said. "The image on the lure slide was so similar to the images shown in the original group of slides that it was fairly difficult to determine if it was part of the first group.

"Whether they were aware of it or not, the non-autistic people had used the context of the original group of slides – the shape, size and color of these images – to decide if they had previously seen the lure image. This same use of context doesn't seem to happen in the autistic brain, which may relate to the altered brain circuitry in autism."

This makes sense to me. In my experience, people with ASD tend not to draw inferences that are as obvious (to the rest of us) as "2+2=4." The same may be true for other disorders--for instance, dyspraxia. My stepmother was staggered when, after she taught me how to make coffee by straining it into a cup and by using a coffeemaker, I said I didn't like the straining method because it made the coffee turn out weak. The obvious inference--that the coffeemaker worked the same way as the strainer and the only difference was the amount of water I put in--escaped me. When she said "You're a smart girl, think about it," it still didn't occur to me. More examples will be discussed when I think of them...

Is there a connection here to the abnormal visual processing discussed in a previous post? (http://mosaicofminds.blogspot.com/2009/08/could-visual-processing-problems-cause.html#comments). Maybe some people with ASD don't "see context" at a cognitive level because at the visual level, they have trouble resolving local details into a context in the first place?

Could visual processing problems cause some forms of autistic spectrum disorders?

2009-08-05T11:13:00.004-05:00

Adults with autistic spectrum disorders (ASD) may have difficulty processing other people's body language because of more general visual processing problems, according to a study from Durham University (discussed at http://www.sciencedaily.com/releases/2009/08/090804193232.htm). This might lead to their difficulty with attributing mental states to others, because body language (while often overlooked) is so important to understanding other's mental states.

Participants were shown short video clips of body movements, without seeing faces or hearing sound, and were asked to identify the emotions conveyed by the body movement. Emotions were basic ones, such as anger, disgust, fear, happiness, and sadness. They were also given a motion coherence test: they were shown dots on a computer screen, with a certain number moving either left or right. The test had different percentages of dots moving coherently in one direction, creating different difficulty levels. There was a "strong link between performances on the tests" in this study, with neurotypical adults outscoring adults with ASD on both tasks.

The results suggest that adults with ASD have "difficulty in perceiving certain sorts of motion, particularly the movement of spatially separate elements spread over a relatively wide area that nevertheless move in the same direction, which is consistent with most previous findings."

This study is interesting because it specifically leaves out faces. Lots of studies have investigated whether people with ASD process faces differently, but there's a lot more to understanding other's mental states than just looking at their faces. A study like this gets at whether ASD problems are face-specific or affect processing of all kinds of social stimuli.

If visual processing is one of the contributing factors in at least some parts of the spectrum, that would be consistent with findings that sensory processing problems are particularly common in ASD kids. It would also be consistent with my guesses about why children with ASD tend to look away from faces (http://mosaicofminds.blogspot.com/2009/07/connection-between-looking-away-to.html#comments).

It'd also be interesting to look into this with kids...

I'd like to say more, but I'm still trying to find the original study. I have the citation to it:

Anthony Atkinson. Impaired recognition of emotions from body movements is associated with elevated motion coherence thresholds in autism spectrum disorders. Neuropsychologia, June 2009

...but so far I'm not finding it, even at Durham University's website (where Anthony Atkinson is from). Will discuss more when I can see the actual results.

What autistic spectrum disorders and leprosy have in common

2009-08-03T13:16:00.006-05:00

A hyperlexic boy* I know (we'll call him Adam) has no friends because he has trouble navigating conversations with his classmates or understanding why they behave the way they do. Yet, in 7th grade, he read Pride and Prejudice and talked intelligently about the thoughts, emotions, and behaviors of the characters. He often has no idea when he annoys or offends others. Yet he is highly empathetic, comforting others when they are upset and trying (clumsily) to defuse fights between family members. He refuses to change his behavior in order to fit in (on those occasions when he's aware he's "sticking out"), but he really wants friends and has admitted to being lonely.

People on the autistic spectrum are supposed to have problems with understanding emotions, empathy, or understanding what human relationships are about. And some autistic people clearly do. But where does this child fit in? How can we say he has problems empathizing when he comforts people when they're sad? How can we say he doesn't get the point of human relationships when he wants a friend--and not just the sort of friend you trade baseball cards with, but the kind you can talk to about anything? How can we say he doesn't understand emotions when he can follow Pride and Prejudice in 7th grade?

The usual reply: "The hallmark of a disorder is that a child's functioning is uneven. He or she may or may not have a problem, depending on the situation, the day, his or her mood, or just plain random chance." You get the same response when you ask: "how can a child who can spend four hours straight doing nothing but playing Final Fantasy VII have an attention deficit disorder?"

There's just no logic in a statement like that. If you want to say that a child is unable to focus his attention, he must be unable to in all situations. If he can focus his attention in some situations, he has a problem, yes, but whatever it is, it's not an problem of focusing attention per se. Similarly, if kids on the autistic spectrum have a faulty theory of mind, say, or an inability to understand other's emotions, this problem shouldn't mysteriously disappear as soon as they're removed from an actual, real-time social situation and able to think about it. Again--the child clearly has a problem, but it can't be a problem of theory of mind or an inability to understand other's emotions. That would be illogical.

But never mind logic. What are we to make of Adam being lumped in with Temple Grandin (author of Thinking in Pictures), Sheldon from the TV show Big Bang Theory, Christopher Boone from The Curious Incident of the Dog in the Nighttime, and possibly autistic savants, as examples of high-functioning ASD? What do all these people have in common, other than the label of "high-functioning autistic spectrum disorder?"

IMO, not much.

Yet studies of ASD--at least, the ones I've seen--battle over "the real" cause of ASD. Is it a mirror neuron system dysfunction? A face-reading disorder traceable to the amygdala and fusiform face area? Perhaps there's a cognitive/attentional component? Could it perhaps be because of physical abnormalities (larger brain size with more neuron growth and less pruning from an early age)?

Part of the problem is that these researchers aren't looking at the spectrum, from autistic savants to Adam, as a spectrum. That's not surprising, since they're not clinicians. All the studies I've seen sort only by IQ. Some really subtle ones might address the issue of whether to include people with Asperger's Syndrome and Pervasive Developmental Disorder (PDD-NOS) alongside classic autism cases--many do. Are we to believe that IQ is the only difference between Adam, who thinks in words, and Temple Grandin, who thinks primarily in pictures? Or between Adam, who understands what friendship is about even if he can't make a friend of his own, and Sheldon from Big Bang Theory, who has no clue?

Anyone familiar with the variety of people in the spectrum can see: people on the autistic spectrum might share some symptoms, but there are many differences in their abilities and disabilities. What it means to have trouble understanding others' behavior seems to differ drastically across the autistic spectrum.

Any differences in cognitive functioning must be based in the brain. So if there are a lot of different cognitive "types" within the autistic spectrum--and there have to be--then there must be a lot of different patterns of brain wiring that cause autistic spectrum disorders. Clearly, autistic spectrum is really a "family" of disorders, each presumably with a different neural and developmental source.

There's an analogy in medicine. All skin diseases that caused whiteness of the skin were once known as "leprosy." Gradually, as we started to figure out their causes, the word "leprosy" came to mean a very specific disorder. "Autism" is like "leprosy." It's currently a catchall term referring to a whole bunch of disorders that--hopefully--is gradually being sorted out. Perhaps one will end up keeping the name "autism." I think we'll get to this point eventually, but it'll be difficult. I'll probably explain why in a future post...

***
*Hyperlexia is a disorder on the autistic spectrum characterized by early development of technical aspects of language, but late development of figurative and social language. To unpack the jargon--Adam, although a late talker, used to spell out the words "Walt Disney Pictures Presents" with alphabet blocks when he was three years old, and learned to read that same year. During neurological testing in early elementary school, it came out that he didn't understand most metaphors. He used to repeat large numbers of phrases he heard on TV or at home indiscriminately, and often inappropriately. It often turned out that he had no idea what they meant. IIRC, this is a typical pattern of language development for a hyperlexic child.

Insight in the brain: mixing and matching with the PFC?

2009-08-03T12:36:00.004-05:00

Just a little snippet I found somewhere and thought was interesting...

The prefrontal cortex has undergone a dramatic expansion during human evolution, so that it now represents nearly a third of the brain. While this area is often associated with the most specialized aspects of human cognition, such as abstract reasoning, it also plays a critical role in the insight process.

...Hallucinogenic drugs are thought to work largely by modulating the prefrontal cortex, tricking the brain into believing that its sensory delusions are revelations. People have the feeling of an insight but without the content.
-J. Lehrer, New Yorker, 2008

This reminds me of what happened to Paul McCartney of the Beatles at a party during the 60's when he apparently smoked a little too much marijuana. Here's what he says about it, conveying both the urgency of the feelings of revelation and his completely different perspective after he returned to reality as we know it:

“I spent the whole evening running around trying to find a pencil and paper because when I went back in the bedroom later, I discovered the Meaning of Life. And I suddenly felt like a reporter, on behalf of my local newspaper in Liverpool. I wanted to tell my people what it was. I was the great discoverer, on this sea of pot, in New York…

So I remember asking Mal, our road manager, for what seemed like years and years, ‘Have you got a pencil?’ But of course everyone was so stoned they couldn’t produce a pencil, let alone a combination of a paper and pencil, so it was I either had the pencil but I didn’t have the paper or I had the …[ellipses in original] I eventually found it and I wrote it down, and gave it to Mal for safekeeping.

I’d been going through this thing of levels, during the evening. And at each level I’d meet all these people again. ‘Hahaha! It’s you!’ and then I’d metamorphose on to another level. Anyway, Mal gave me this little slip of paper in the morning, and written on it was, ‘There are seven levels!’ …Not bad for an amateur. And we pissed ourselves laughing, I mean, ‘What the f***’s that? What the f*** are the seven levels?’”
-Paul McCartney, Many Years from Now (autobiography)

This doesn't mean that that "Eureka" feeling is always content-free. I'm assisting in a lab that does insight research right now, and they've shown plenty of evidence that people who say they solved problems with insight use a whole different process for correctly solving problems. (For an example of what I mean by a whole different problem-solving process, see Jung-Beeman et al., Neural Activity When People Solve Verbal Problems with Insight, PLoS Biology, April 2004). Seems like the feeling of insight is independent from the actual process of insightful problem solving. Maybe the feeling of insight (located in the prefrontal cortex) can connect with a number of different brain processes, all using different networks. For instance, it'd be interesting to compare the network you get in insight problem solving to that of empty "insight" like Paul McCartney experienced.

If the feeling of insight can go with multiple different processes, that's great for me. I have some theories about the feeling of insight outside the context of the problem-solving process my lab is studying. Maybe my hypotheses could work after all? ::crosses fingers::

Connection between looking away to think and autistic spectrum behavior?

2009-07-30T13:18:00.003-05:00

In a recent post, the Eides (www.eideneurolearningblog.blogspot.com) wrote about a study showing that elementary school children look away from their questioner when given a difficult problem to solve (http://eideneurolearningblog.blogspot.com/2009/07/eye-contact-look-away-to-think-and.html#comments). When children were trained in gaze aversion, it helped their performance. When instructed to "look at me," their performance decreases. The theory is that looking away decreases "cognitive load" by removing extra environmental input from the attentional field.

Interestingly, the poorest performance occurred while looking at the examiner (over and above the decrease in performance from looking at a moving visual stimulus). As social beings, we're highly tuned to the facial expressions and gestures of others. So it's not surprising that looking at another person would be particularly distracting.

Children on the autistic spectrum are known for looking away from faces and eyes. What are we to conclude about them from this study, if anything?

Some researchers think spectrum kids look away from faces because they process faces differently than other kids. They note that spectrum kids show less activation in the fusiform face area (FFA) while looking at faces1. The FFA is particularly sensitive to faces, since most of us are face-reading experts, but they also activate in response to any visual stimuli in which a person has expertise. Car experts' FFAs activate for cars, but not for birds, while bird experts' FFAs activate for birds but not for cars2. Children on the spectrum process faces differently, some researchers argue, because from an early age, they do not look at faces as much as their peers3. As a result, they don't develop that expertise and their FFA does not wire properly to become sensitive to faces. That prevents them from taking in information by looking at faces.

Some researchers have disputed that assumption, I think convincingly. Dapretto found that spectrum and typically developing kids looked at the eyes for equal lengths of time, contradicting the assumption that children on the spectrum always look at faces less than their peers4. He used a fixation cross to cue spectrum kids to focus on the face and eyes, which studies showing less activation in the FFA did not do. The fixation cross overcame spectrum kids' usual tendency not to look at faces and eyes. If differences in methodology can remove gaze effects, then they're not a fundamental characteristic of autistic spectrum disorders. Furthermore, even at the most liberal thresholds, Dapretto didn't see any difference in FFA activation between kids on the spectrum and typically developing kids5. It doesn't look like face processing problems are the culprit here.

The gaze aversion studies suggest another possibility. What if children on the spectrum actually look away from faces because they are particularly sensitive to, and overwhelmed by, large amounts of stimuli from the environment? Many children on the spectrum are either over- or under-sensitive to sensory stimuli, so it would make sense. (Children who are over-sensitive are more obviously overwhelmed by stimuli from the environment, but it's possible that children appear undersensitive because they've developed the habit of tuning out stimuli so they don't become too overwhelming).

If children are just overwhelmed by large amounts of stimuli, they need not have a problem processing faces. Maybe faces are no more a problem for them than for their peers, but since they have a lower threshold of overwhelm, they have to look away more?

Maybe the fact that autistic spectrum kids look away more from faces, combined with the studies described by the Eides, supports the caetextia theory6. In other words, kids on the spectrum have difficulty shifting between attentional foci, and integrating memory and information from the environment into their thinking and decision-making. If taking in & integrating information from the environment is particularly a problem for spectrum kids, they'd probably be more likely to look away from faces than their peers.

I'd love to see research on this topic. For instance, it would be great to compare typically developing kids' and autistic spectrum kids' performance decrease when asked to look at the experimenter (vs. when asked to look at some other moving object).

Also--it'd be interesting to know how many people on the autistic spectrum have a hyperfocused attentional profile. There may be a connection here.
***
1 Bolte, S., Feineis-Matthews, S., Prvulovic, D., Dierks, T. & Poustka, F. (2006). Facial
affect recognition training in autism: Can we animate the fusiform gyrus? Behavioral Neuroscience in the Public Domain, 120(1), 211-216
Wang, A.T., Dapretto, M., Hariri, A.R., Sigman, M., & Bookheimer, S.Y. (2004). Neural
correlates of facial affect processing in children and adolescents with autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 43(4), 481-490.
Schultz, R.T. (2005). Developmental deficits in social perception in autism: The role of
the amygdala and the fusiform face area. International Journal of Developmental Neuroscience, 23(2-3), 125-141
2 Schultz, R.T., Grelotti D.J., Klin A., Kleinman J., Van der Gaag C., Marois R.,
Skudlarski P. (2003). The role of the fusiform face area in social cognition: Implications for the pathobiology of autism. Philosophical Transactions of the Royal Society of London—Series B: Biological Sciences 358(1430), 415-427
3 Schultz, R.T. (2005). Developmental deficits in social perception in autism: The role of
the amygdala and the fusiform face area. International Journal of Developmental Neuroscience, 23(2-3), 125-141
4 Dapretto, M., Davies, M.S., Pfeiffer, J.H., Scott, A.A., Sigman, M., Bookheimer, S.Y.,
Iacoboni, M. (2006): Understanding emotions in others: mirror neuron dysfunction in children with autism spectrum disorders. Nature Neuroscience 9(1): 28-30
5 As above.
6 www.caetextia.com