5/14/2013

Learning to understand what autistic people understand (or don't): What you see is not what you get

There are two opposite ways to misunderstand autistic people.  One is to assume they don't understand when they do.  The other is to assume they do understand when they don't.

My younger brother, who is very bright, had hyperlexia--a form of language development involving early reading, vocabulary, and mechanical knowledge, but delayed comprehension.  He loved Disney movies as a toddler, and we caught him spelling out "Walt Disney Pictures Presents" with alphabet blocks when he was two.  It can be hard to tell when a child growing up in a sea of words and books truly learns to read, but we think he taught himself to read when he was three.  Although he was late to talk and spoke very little at first, when he did start speaking, he had good vocabulary and grammar.  And when we spoke to him--the way my parents spoke to me, the way we'd speak to any verbally talented child--he seemed to give all the verbal and nonverbal indications that he understood.

But often, he didn't.

In retrospect, the signs were there.  There was a particular way he stared sometimes when I talked to him that looked like a deer in the headlights.  Eyes large and blank, mouth open.  I figured there was no way he couldn't understand me, so I thought he was doing it on purpose to annoy me.  It was only after the diagnosis of "Aspergers" that we realized that he really didn't understand.

Flappiness wrote a beautiful but often painful post about the opposite problem: struggling to presume competence in a child who gives none of the cues to understanding we expect.  TRIGGER WARNING: this may be hard to read if you yourself have been presumed incompetent.  The reason I'm quoting her here is that she *does* understand the importance of presuming competence, and tries to do it, but it might still be hard to hear why it's difficult.  If that's true for you, please skip to the end of the block quote and continue reading.  She writes:

“Always presume competence” can be a hard rule for non-autistic folks to follow.  That’s not because we don’t agree – at least in theory.  But severely autistic people may not give a lot of signals that they understand something.  They often do not appear to be listening or watching.  And, when you ask them to do something based upon what they have seen or heard, many do not respond as we would expect them to.  In the absence of any visual indicators demonstrating competence, it is easy to wonder whether understanding is happening at all.  For, somewhere in the back of a typical person’s head, we wonder why someone who understands doesn’t respond when it’s in his best interests.  It’s a lot like religion.  You can be taught the tenets of your faith.  You can reason out your belief system in your head.  But, in the day to day grind of living, it is natural to question what we cannot see.  We wonder if there is a God out there.  And we wonder if our severely autistic loved ones really comprehend all that is happening around them.  Maybe you’ve never wondered.  Maybe you are like those fortunate folks who have never doubted their faith.  But, if you’re like me, you have wondered, worried, and sometimes been haunted by the possibility that you are wrong.  Or even that you are right. 
When I began to be convinced of Callum’s autism, of the first things a mother of two autistic children told me was never to talk about him while he’s in the room and to always believe that he knows what is happening.  She related stories to me of her children recalling events from years earlier that she had believed they had not noticed. 
But they had.  And with perfect recall of the details.  Because they didn’t talk at the time or cooperate with what was requested of them, she had assumed they weren’t listening.  Having known them at that time, I would have agreed with her.  They didn’t appear to be listening at all.  At that time, they could barely talk.  No, we shouldn’t have assumed, but -unfortunately- it’s an easy mistake to make. 
Fast forward several years, and now I have an autistic little one of my own.  But even having heard her story, I questioned the truth of it with regard to my own child.  I’ll admit that I was somewhat confident of my own ability to read him.  I thought I would see the proverbial light bulb go off and then I would presume competence.  But Callum, in the grand tradition of children everywhere, has humbled me recently.  We are having a little “language explosion” you see.  Almost every day now, he is surprising us with knowledge he had – but had not previously shown. Knowledge I was so very afraid he wasn’t absorbing. 
Today, Callum spoke his name for the first time.  And I missed it.   It sounded more like “Cam”, so I didn’t pick it out of his typical babble chatter until he said it a few more times–while waving at his own reflection in the mirror.  (Yeah, I know.  Sometimes, I am not so smart.)  I remember turning and asked him if he’d said “Callum”.  So he looked back to the mirror, waved at himself again, and said, “Callum” — with the sweetest smile.  I’m sure I stopped breathing for just a moment.  Overjoyed though I was that he finally said his own name, what hit me was his determination to be seen and heard.  He kept on – until I got it — and then confirmed it.  Apparently, he was motivated to speak his name by the reflection of himself in the mirror.  A reflection he liked. 
So, now I must learn how to adjust the mirror in my eyes to reflect who he really is and who he can be.  Because he is watching.  He is listening.  He is learning.And when he looks at himself through me, I want him to like and be inspired by what he sees.  For, if what he sees in my eyes is not faith in him, how will learn faith in himself?

All right, everyone back with us?

The problem is, most of us have a certain set of verbal or nonverbal cues we automatically assume mean understanding, and another set that we automatically assume mean incomprehension.  A particular sort of fixed-but-not-too fixed eye contact; nodding; mimicking our movements; interrupting only to ask an appropriate question or to "follow on" or "elaborate"--these and others seem to say, "I understand."  Blank eyes, furrowed brow and puzzled facial expressions, looking around a lot, shrugging, unusual silence without questions and comments--these and others say, "I don't understand."  And most of the time, for most people, these work--otherwise, we'd have a different set of assumptions.  The problem, though, is these interpretations don't feel like interpretations.  They're automatic.  You look at someone and see "they understand" or "they don't understand what I'm saying" the way you look at the sky and see it's blue.  It takes a thoughtful person to even see how you could question it.  You see it, it's there.

But autism doesn't work like that.

It's been said that autistic kids are monotone (but really, their pitch is wider-ranged and more variable than the average person's; we just don't hear it because we don't expect it 1,2,3,4).  It's been said that autistic kids have a poker face.  I don't know of any studies actually investigating this, but my guess is it's true for only a few.  The rest probably have subtle, or just different, expressions we don't know how to interpret.  It's been said that autistic people don't express their feelings, even know what they are, until they explode in a dramatic meltdown of tears and yelling and maybe even flying fists.  Maybe--but isn't it also possible that we don't see the warning signs before the meltdown the way we might with a typically developing kid who is overtired, hungry, and on the way to a similar meltdown?  It's been said that autistic kids are in their own world, that they don't express love.  And it's true that many don't like hugs, don't point, don't follow their mothers' joint attention.  But they feel connected and learn new words when their parents follow their joint attention, just like any other kid 5,6,7.  And some autistics, such as Ballestexistenz, have pointed out in video recordings all the signs of love and caring that autistic kids show.  Ones that weren't conventional, weren't expected, and so they were missed.

There's a lot of emphasis on teaching autistic kids to understand how and why neurotypical people behave the way they do.  And there should be, so autistic kids no longer feel so adrift on the "wrong planet" where the rules don't make any sense  There's a lot of emphasis on teaching autistic kids to emit the cues we're expecting, so we know how to interpret their feelings and behavior.  And this is a great thing for autistic people to be able to do, especially when dealing with people they'll only have to deal with once or twice, who aren't going to invest the time to learn their cues.  But parents, siblings, spouses, and friends who want to learn how to interpret their autistic loved one's cues are on their own.  Only like-minded neurotypicals and autistic adults are encouraging them to do it.  Most don't even know it needs to be done.  Unfortunately, a lot of neurotypical parents, siblings, spouses and friends don't seem to realize that either.

And here's something everyone in the autistic community should know: it's hard to undo conditioning you didn't even know you had, that's as basic as seeing that the sky is blue, and replace it with....what?  As hard as it is to undo your basic reactions, as much patience and self-questioning as it takes, at least you know what's required.  But when trying to figure out the real cues, how do you know what to look for?  It's even harder if your autistic loved one can't speak and tell you if you're on the right track.  This is one of the most valuable things autistic bloggers do: not only do they tell you what the world looks like from their perspective, but you can sometimes catch little glimpses of what they look like from the outside, so you can tell whether your autistic loved one is experiencing a similar emotion.

This is a hard struggle, and I can understand why people looking only for casual friendships or acquaintanceships might be scared off by the work required (although as Rachel Cohen-Rottenberg points out, they are placing their own convenience above another human being's need to feel connected).  But I think anyone who loves an autistic person and is connected with them in some long-term way is obligated to try.  We need to question our assumptions, observe our autistic loved one closely, ask them and other autistic people about anything we don't understand (and there will be a lot of questions--and probably should be).  (By the way: not every autistic person always feels up to answering, or wants to field questions, something we should also respect--and ask someone else).

We probably will fail, a lot.  We need to be patient with ourselves and keep trying.  And if the autistic person in our lives grows up and one day asks, "why did you do this horrible thing?" We have to be able to look them in the eye, apologize, and say, "I'm sorry, I did the best I could, but I didn't understand."  

To acknowledge that replacing our automatic social assumptions is hard is not an invitation to engage in a "woe is me" pity party.  We only have to learn to interpret a new set of social cues, not learn to imitate them ourselves--the autistic people in our lives have a much more difficult struggle than we do.  For other non-autistic people, it's about realistically confirming, sympathizing, validating: yes, this is the unique situation involved with loving someone with autism, no, you're not alone, yes, it's hard, and yes, it's OK to feel overwhelmed sometimes, even if other people have harder struggles. For autistic people, it's about understanding that when we (inevitably) screw up sometimes, it's not out of malice.  Some of us really are doing our best, and are open to learning, but we have our own limitations of time, energy, patience, or mental health to deal with.  So please bear with us as we keep learning.    

The world may not always understand the autistic person in our lives, no matter how "typical" they may have learned to appear.  But I'd like to think that we can.

References:

  1. Yoram S. Bonneh, Yoram Levanon, Omrit Dean-Pardo, Lan Lossos, & Yael Adini (2010). Abnormal speech spectrum & increased pitch variability in young autistic children. Frontiers of Human Neuroscience 4: 237.
  2. K. Hubbard & D.A. Trauner (2007). Intonation and emotion in autistic spectrum disorders.  Journal of Psycholinguistics Research 36, pp. 159-173.
  3. A. Nadig & H. Shaw (2012). Acoustic & perceptual measurement of expressive prosody in high-functioning autism: increased pitch range and what it means to listeners. Journal of Autism & Developmental Disorders vol. 42 Iss. 4, pp. 499-511.
  4. Megha Sharda, T. Padma Subhadra, Sanchita Sahay, Chetan Nagaraja, Latika Singh, Ramesh Mishra, Amit Sen, Nidhi Singhal, Donna Erickson, & Nandini C. Singh (2010). Sounds of melody--pitch patterns of speech in autism. Neuroscience Letters Vol. 478 Iss. 1, pp. 42-45.
  5. Michael Siller & Marian Sigman (2002). The behaviors of parents of children with autism predict the subsequent development of their children's communication. Journal of Autism & Developmental Disorders vol. 32 Iss. 2, pp. 77-89.
  6. Michael Siller & Marian Sigman (2008). Modeling longitudinal change in the language abilities of children with autism: parent behaviors and child characteristics as predictors of change. Developmental Psychology Vol. 44 Iss. 6, pp. 1691-1704.
  7. Twyla Y. Perryman, Alice S. Carter, Davniel S. Messinger, Wendy L. Stone, Andrada E. Ivanescu, & Paul J. Yoder (2012). Brief report: Parental child-directed speech as a predictor of receptive language in children with autism symptomatology. Journal of Autism & Developmental Disorders.