Autism 101: A guide to Autistics Speaking Day, 2011

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.

*** 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*

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.
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. 


  1. Hi Emily,

    I'm an Emily too :)

    I can't imagine how long it must have taken you to compile this post, but I am so glad you did! I've only had the chance to skim through it as I'm working on a paper (on disrupted neural synchronization in autism, of all things). I'm looking forward to reading it more thoroughly when I'm done though, as even in my skimming I saw certain things that will surely help me put some of my own thoughts into words.

    Thank you!

  2. Thanks for putting this together, and for the link! You could turn this into a sociology paper :)

  3. Twitchy Woman,
    Thanks for reading! Your post gave me a lot to think about, so I was happy to link it.

    What sort of sociology paper did you see this turning into? I have a lot of partially-formed thoughts floating around about neurodiversity and the autism community, so it'd be great to bounce some ideas around. :)

  4. Hi Emily,
    Thanks for reading! I'm glad to hear from another Emily. :) You said you saw some things that'll help you put some thoughts into words--I'm looking forward to seeing what you come up with.

    It did take a few days to put this list together, but if it helps spread the word about ASDay and gets people talking, it'll be worth it.

    You're working on a paper on disrupted neural synchronization in autism? Interesting! Are you a psychologist/neuroscientist, too?

  5. I don't have a very specific idea of what kind of sociology paper you could write - maybe a sort of general discussion of the diversity of the adult autistic experience and identification of frequent "themes" in autistic narratives.

    The one neat sociology-type paper I've read was this one: http://www.asknz.net/uploads/2/9/3/7/2937986/invisible_at_the_end_of_the_spectrum.pdf

    It's by a clinician and not a sociologist, and is focused entirely on people perceived as "high-functioning," but I really like its methodology and was pleasantly surprised to recognize myself in a lot of the narratives. I think it would really help to try and synthesize the narratives we're seeing on the internet and put them in a format that's accessible to professionals and academics outside of the community. It might also be helpful to autistic adults who are considering becoming more active in the community and want to know more about what it's like.

  6. I guess I should say I'm working on a paper *about* a paper on disrupted neural synchronization, haha. I'm taking a developmental psych class this quarter and our most recent assignment was to compare a popular press article with a professional journal article about some aspect of cognitive development, so I used a press article about Dinstein, et al.'s recent research. Then we had to apply constructivist, information processing, and nativist interpretations to the findings. Fun stuff :)

    And yes, thank you for the link as well!

  7. Thank you for compiling this interesting compendium, and for linking to me not once but three times! I discovered some excellent articles here that I had not yet seen as well as some that I had already read back on 1 November.

    Blessings and peace,

  8. I'm kind of amused by your summarizing my post as being about allies being the problem. to me, They aren't- they can even be a resource. The problem is that they aren't acting as allies. the type of allies that I'm referring to center themselves, and don't allow or even disqualify the voices of actual Autistics- particularly when they disagree with said Autistic voices- instead of listening and supporting.

    Also amused because I feel like next to some of the other Autistics I know I'm such an ally lover/caterer. . . ;)

  9. @crackedmirrorinshalott: So sorry, I didn't mean to mis-summarize your post! I agree that these sorts of allies who don't listen aren't acting like allies. I meant to quote you as saying these sorts of allies are the problem, not all of them. I'll go back and fix this. :)

    @Lydia: You're welcome, I'm glad you found some interesting posts! Blessings. :)

    @thoughtyautie: Interesting! Sounds like fun! What kind of interpretation did you end up doing? I'm not immediately sure how any of these perspectives would respond to this sort of study, and it's giving me a lot to think about.

    @whoselaw: Thanks for the link! You've definitely gotten the wheels turning. I can see how this would be interesting to autistic adults new to the community. It's good to know there might be general academic interest, too. Something to look into once I've finished grad school applications...

  10. Hmm...the interpretive part of my paper is 4 pages long, and I don't think I can really summarize it. If you give me your e-mail address through the contact page on my blog though, I'd be happy to share it. Just keep in mind that it's a 100-level course, and that even though the article is about neurology, my interpretation is about the theories of cognitive development, so anything I say about neurology is solely for the purpose of hypothetical interpretation :) But yes...it was indeed fun!