[This entry is Part 5 of a six-part series presenting my talk on autism delivered at the Autism and the Pursuit of Happiness conference at the University of North Carolina earlier this year. I invite you to read all the parts in the series — the entire talk. Please see the links at the bottom of this post if you’d like to read the other entries first; the series starts with Part 1 here. Thank you! ~ rah]
The fifth value contrast I want to talk about, one that addresses an issue shared by parents of autistic children and autistic adults, and also the one most awkwardly worded right now, is: YOU AS AUTISM OR YOU AS YOU.
When I was working on this part of the presentation, Nicholas was messing around before bed playing the game Simon — the original Simon game from around 1980. After my mother passed away, my middle brother got the Steinway piano, and I got the Simon. (Just kidding here.)
It’s a game that has four large buttons with lights in different colors, each with a unique note, arranged on a circular board. The buttons flash and make a sound in a random pattern, and the player presses the buttons to repeat back the pattern, which gets one beat longer on every turn and which intermittently plays faster and faster. Nicholas was getting scores of 12, 16, 8 — good scores mostly, but he was just messing around.
I said to him, “Buddy, I need you to have a good game for my presentation.” He looked up at me. I turned on my iPhone’s video camera. He looked down at the game. He played.
This is the end of that game, the one he played immediately when I made the request (I’m playing the video a little longer than I did at the presentation, and it’s pretty awesome, I think) …
Nicholas maxed out the game at 31 on the hardest level, which he had never done before and which is, I can tell you, very hard for anyone to do: 99 percent of people would not be able to do it no matter how many times they played.
And Nicholas did it simply because I asked him to have a good game. Otherwise he would have just kept messing around at it — and had an excellent time doing so.
It would be so easy, and so common, to say: Nicholas is great at Simon because of his autism.
Similarly, we could say that Nicholas remembers and insists upon exactly the right way a specific thing needs to be done — because of his autism. Nicholas can’t carry on much of a substantive neurotypical conversation — because of his autism. When Nicholas would tantrum years ago — because of his autism. When he fixates on something and becomes very good at it, like juggling, when he has an utter fear of the water, or when he overcomes his utter fear of the water due to obsessive determination: because of his autism.
Parents do this all the time. My child has meltdowns because of his autism. My child isn’t potty trained …. lines up all the bottles in the bathroom … doesn’t talk … or doesn’t show love for me, because of her autism.
Professionals do it, too. Your child is this way, does this or that, can’t do this or that, because of her or his autism.
But let’s pause here.
Many non-autistic people have behavior issues, are math whizzes, have OCD preferences and dislikes, are socially inept, aren’t demonstrative about love, or are good at Simon.
So is your child — or are you — this way or that way because you’re autistic? No. That’s really meaningless.
You’re this way only because you’re you.
There are tendencies and traits within the autism community, yes, That’s because those very traits are exactly how we define and diagnose and identify the community.
People who are like this and that and the other thing are labeled autistic. But it is just a label.
It is randomly assigned and a convention.
We could shift those conventions and so shift the population we call autistic.
We have, in fact, at different times shifted those conventions. People suddenly are or aren’t autistic because of a change in diagnostic definition or systemic evaluation approach.
In certain spiritual traditions, labels indicate — or, rather, create or even are intended to create — differentiation. They mark something as separate from oneself. They are used to distinguish oneself from other parts of reality.
So, if autism itself is actually anything, it’s a group of individual people who have been collectivized by a label whose definition is largely random.
Perhaps there are advantages to certain collectivizations. Collectivized labels and groupings, randomly assigned due to circumstance and culture, exist in countless aspects of our lives: think countries, cities, and towns, fans of sports teams, ethnic and racial designations, schools, advanced classes and resource classes.
These labels can foster identity and culture and a sense of belonging.
They can also lead to creating a sense of otherness — the other — that may lead to bullying, ostracization, discrimination, ghettoizing, and even final solutions.
We sometimes may stop thinking of individuals as individuals but as ideas, as caricatures of collective identities. This can happen both outside a population and inside of it, and most certainly in the thinking of those close around it — including parents of autistic people.
A person can take pride and have a sense of identity in a grouping, and that’s wonderful. There’s a strength in community, a belonging, overcoming together pejorative associations and meanings, taking pride in identity.
But ultimately, regardless of all the labels and the assumptions they create, you’re you.
You are the one who is good at math or at recognizing patterns, who is socially quiet or whose senses might overload at a gathering. Whether or not you are autistic.
You can’t separate the autism out from your child — or from you, if you’re autistic. But you also cannot define yourself or the child as autism. It is, instead, part and parcel.
Parents often subsume their child in autistic identity. So do teachers, therapists, and others.
Doing so usually means stripping away individuality and using depersonalized, collective, generalized approaches for collective, depersonalized best outcomes, rather than honoring the individual person, the individual circumstances, and the individual life.
Parents can also strip their child of autistic identity: autism as something outside that has happened to their child. To go back to the first part of this talk: accept the child, reject the autism. In some ways that’s the opposite approach even though they’re not really mutually exclusive.
It is equally entirely common, and it is just as injurious as a denial of a child’s whole personhood.
If you missed the other posts in this series, here are links to all the articles in the series, including the concluding Part 6 that follows this entry. I would appreciate your comments on this and the other posts, or your sharing them on social media using the share buttons toward the bottom of each page:
Part 1: Accept or Reject
Part 2: Grieve or Live
Part 3: Support or Save
Part 4: Acceptance or Self-Acceptance
Part 5: You As Autism or Autism as You
Part 6: Independence or Connection