Not explaining autism

There are many attempts to define and explain autism out there. This may be hardest when it’s in a real-world context; “how do I explain autism to a judgmental parent on the playground?” or “how do I explain autism to my autistic child?”

The answer I’m arriving at over time is: I’m not going to explain it.

If I sense that people might wonder about my son in some context, I like saying something like: “he takes a while to warm up to strangers,” or “he needs a break.”  Or saying nothing at all.

I dislike invoking “autism as explanation”: “I’m not a bad parent, he just has autism” / “my son isn’t a bad kid, just autistic.” These statements internalize the ideology that difference isn’t OK unless psychiatry says it is, and they accept that others are “allowed” to judge us. My view is that it’s just fine to behave differently (in a way that’s harmless to others), and this requires no explanation or excuse. If a person behaves differently but meets no DSM criteria, that’s fine too.

Rather than describing some general label like “autism,” why not describe the person? If a child acts differently on the playground, say “he likes to do that sometimes.” That’s a fine explanation.

Unusual behavior is OK because the person is a person, not because the person has been labeled autistic by a clinical professional. We do not need a note from a doctor to be accepted. We do not need to justify ourselves to nosy, judgmental people.

I understand the pressure of judgment, and the fear of being considered a “bad mom” (moms are judged much more harshly than dads). It’s hard to cope with this.

What about explaining autism to your child? I haven’t had to navigate this one yet. But I think I want to say something like, “autism is what some people call people like us.” And then explain “like us” with lots of strengths included. I would focus the explanation on how schools and others need to put people in boxes, and how they are wrong to do so.

Autism is not a fact out there in the world; it’s a framing and a way of thinking. As always, that doesn’t mean the word “autism” is meaningless, nor does it mean that the traits and behaviors we call “autism” are imaginary. It does mean that given the facts we call autism today, we could group them differently, we could talk about them differently, and we could act on them differently. The meaning, framing, and actions around autism have changed from decade to decade over the last century. Skepticism is warranted, and I would embed that skepticism in what I tell my son.

So, I guess I am explaining autism; but not as a fact. I want to explain it as an ideology, a bureaucratic convenience, an externally-imposed way of thinking that I don’t necessarily care to internalize. I want to keep some anthropological distance from the culture I’m describing.

It isn’t a secret or somehow shameful that the word “autistic” might be applied to my son or to me. I’m fine talking about it (in person though; as you can see I keep it semi-anonymous online). The concern here is that I don’t endorse the meanings and implications baked in to the word “autism” as commonly used. It’s a matter of accuracy, an issue of clarifying what “autism” means to me vs. what it means to others.

Some pedantic accuracy

If forced to “explain autism,” I’d have to adjust the usual words quite a bit. Here’s an example from wikihow:

Autism is a developmental disorder that generally leads to differences in communication and social skills. It is a neurological difference that presents significant difficulties, but also blessings.

How many mistakes are in here?

  1. “disorder” is singular but should be plural
  2. “disorder” should be “condition” to remove value judgment
  3. “leads to” implies that autism is an underlying explanation for differences, when in fact it’s only a description of differences with nothing to say about explanation or cause
  4. “neurological” is a false distinction (non-autistic people are also “neurobiological”)
  5. “significant difficulties” may or may not be true for a particular person; autism diagnosis currently waffles on whether autism is an immutable trait or a functional impairment, especially for preschoolers
  6. “also blessings” may or may not be true for a particular person

So yeah, I don’t like that definition. I could nitpick the rest of the wikihow article too but you get the idea. Most discussion of “autism” internalizes and takes for granted a pile of assumptions that I can’t get on board with.

Let’s look at another article on The Mighty about a parent explaining autism to a child.

I love you so much and am so very proud of you. You are smart and good and funny. Autism just explains why sometimes things feel difficult for you, why you might get so frustrated, and why you have an extra teacher come help you at school.

“But autism not only causes you some frustrations, it also makes you unique. It helps you have an amazing memory. Even when you were very little I could read a book to you and you would have the whole thing memorized after just hearing it once.

Talking to my son about this is a hard problem, and as I said I don’t quite know how to have this conversation yet.

But the part of that article that jumps out at me is the belief that autism explains anything. It’s central to this text: “explains why,” “causes you some frustrations,” “helps you have an amazing memory,” etc. I can’t agree. Autism explains nothing. It’s not an appendage. It is not an outside force operating upon anyone. It is a description or classification of people along a certain dimension; it is a shorthand for a checklist of observed traits and behaviors. There’s no difference, other than brevity, between saying “has autism” and listing the specific differences that make up the definition of autism.

If a parent worries about a child’s differences, and they go to a clinician for diagnosis, they have not learned “the differences are because of autism,” they have learned “the differences are considered autism.” The first statement is a fact about an autistic person; the second statement is a fact about clinical and educational institutions and ideology. As parents, if we know our child well already, then diagnosis tells us nothing about our child — but it tells us volumes about the world our child lives in.

I keep writing about this theme on this blog. A while back I argued that we should redirect anger about overdiagnosis to bureaucracies, away from parents and clinicians. Recently I argued that schools reframe their own one-size-fits-all limitations into medicalized diagnosis of individual children.

Not afraid to use the label

Labels have practical value. (A nice little summary of pros and cons of labels can be found in table 1 of “Ten questions about terminology for children with unexplained language problems”.) I have no problem with using “autism” to get things done within institutions, whether schools or insurance companies. But I’m eager to compartmentalize this use of “autism” and keep my own understanding separate.

Autism as identity

I appreciate that some would take the term back, and convert it from medical diagnosis to Autistic identity. I respect that. I often feel that this doesn’t go far enough. For Autistic to work as an identity, medical authority over the word may need to be abandoned.

I can’t explain autism

For me, autism is an anthropological or sociological problem: why did the world create the idea “autism” and apply it to people like my son and I? I’m trying to understand that.

In most heated discussions about autism, I feel on the sidelines; as if both sides are accepting some facts that I find mysterious. Autistic people aren’t the puzzle pieces. The mystery lies with the social phenomenon of “autism,” and all the ways we talk about it.

Autism isn’t mine to explain. It’s someone else’s formulation — and often, it’s a formulation I don’t think I can explain and justify.

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