Why aren't autistics writing the autism assessments?

No, but literally... did they consult any autistics on these questions?

There’s a lot of differences between the way neurotypical brains and autistic brains work, but one really well-known difference is the way that autistics process information: we tend to take information at face value, or literally. 

It’s why most autism assessments have at least one question like this:

”Are you very literal in your thinking and have trouble understanding idioms or slang expressions such as “break a leg”, “bite the bullet”, “stabbed in the back”?”

But there’s a problem with this question, both in the form above and in the various adaptations of it found in other assessments.

I would select “FALSE” for this question. 

Because I learned in drama club that “break a leg” is a way to wish someone luck and if someone said, “my friend stabbed me in the back,” I would not for a single second think that they meant that their friend crept up behind them and sunk a shiv into their spine. 

Unless they were telling me this story from prison.

Or if they were a pirate, maybe.

Or if they also said they stole $100 from a biker with anger problems named Slasher.

But you see all that up there? 👆

That’s the exact kind of literal thinking this question is TRYING to identify. 

And it’s doing it badly. 

If you were to follow along as I answer more questions on these autism self-assessment tests, you’d see that it’s not just that one question that fails to account for Autistic literal thinking.

“You have trouble interpreting people’s body language.”

I’ve read six or seven books on body language and I took a free online course in non-verbal communication, so I can usually figure it out. FALSE!

I suppose I can see how needing half a dozen books and a class to do a thing miiiiight mean you have trouble with that thing, and almost certainly means you used to have trouble with that thing.

But that’s not what they asked, so FALSE it is!

“Think about your daily routine. Would you say you follow the same schedule every day of the week, and don’t like unexpected events?”

FALSE! I would say that my routine is often affected by my travel schedule and by having a young child so my every day isn’t the same.

Now, do I drive past three perfectly acceptable grocery stores to go to the one near my old house because I already know the layout, even though I moved almost three years ago? Every time.

But that’s not what they asked, so FALSE it is!

There’s also a lot of absolutes in autism assessment questions, which introduce other problems for literal thinkers.

“I never do this” means “I NEVER do this.” If I did it one single time, the answer to “I never do this” question is FALSE.

And if the question says “I always do this” then even one exception will cause me to choose FALSE, too. 

I’m not being coy or difficult, or trying to “outsmart” the test.¹

I just read the question and answered it exactly as it was written, because that’s what literal thinkers do.

“I can’t tolerate things I dislike, like smells, textures, or sounds.”  

Well, as much as I prefer not to, I can tolerate them if I have to.

For a little while.

I might feel horrible after and I might never go back to that place again. But I do what I have to do to survive, so let’s go with FALSE!

If the questions were written this way explicitly to elicit the kind of roundabout answers I’m giving above, that just might be OK. These tricky questions could act as a Trojan Horse, unwittingly inviting the assessor into the autistic’s literal mind where they need only take a quick peek around before shouting, “Stop the test! We’ve found one!”

(AI-Generated Image) Those sneaky psychologists and their ancient technology.

But that’s not what these questions are doing. There’s no room for explanation or clarification or follow-up. No room for nuance. Choose TRUE or FALSE, and move on to the next question.

And there’s a good chance that next question will ask assessment takers to compare their experience to “normal.”

Even if we ignore the problematic normal/not-normal dichotomy being set up here, it’s baffling to me how nobody could see that these are impossible questions to answer, logically.

How should I know if “I speak with a normal rhythm” or “I speak in a normal tone” when the only experience I know is my own? How would I be able to identify if “things that should be painful are not,” if it’s predicated on the fact that it doesn’t feel painful to me in the first place?

“You may speak too loudly when you should keep your voice down.”

Sometimes people have told me that I’m speaking loudly, but I never think that I am. 

So that’s another FALSE!

(AI-Generated Image) Speaking too loud? Me? I don’t hear a thing.

With so many false negative opportunities for literal thinkers in these autism assessments, it’s a miracle any of us get diagnosed at all, honestly.

But even if an autistic woman like me makes it this far into the assessment without too many false negatives, they’d still have to contend with questions that may produce false negatives merely by being so… well… male.

I keep lists of things that interest me, even when they have no practical use (for example sports statistics, train schedules, or calendar dates.)

I know tons of random facts about animals, art, nature, and languages, and I’ve got more Taylor Swift factoids and lyrics memorized than will ever be useful, to be sure. But I don’t care for trains or sports, so this must be FALSE for me!

Do you prefer to play individual games and sports like golf, where everyone works for themselves, instead of team sports?

I don’t play sports at all, thank you very much. FALSE! (And no offense, Autism Assessment Maker, but golf definitely wouldn’t be my first pick if I were to start. BORING!)

When autism assessment questions like these are presented through a male-centric lens, or only cite traditionally male activities and interests as examples, it increases the chance that autistics socialized as women won’t be identified.

It’s not just about gender, though. Golf is a physical and expensive activity dominated by the wealthy and white, typically living in suburban areas with enough space for sprawling courses.

So this single question is likely to alienate not just autistic women, but also autistics of color, urban autistics, autistics facing poverty, those with physical disabilities, and more.

I understand, of course, that the questions can’t cite every possible hobby or interest or include every possible identity. But still, it doesn’t seem terribly difficult to make them more inclusive and less stereotypically male, especially given the table-stakes understanding that these assessments are being taken by literal thinkers.

Here’s my attempt:

I keep lists of things that interest me, even when they have no practical use (for example, facts about favorite animals, sports teams, musicians, books, and other interests.)

See? How hard was that? (Not. It was not hard.)

I know a lot goes into making these things scientifically sound, and I can’t just waltz in and reword the assessments at will.

But I guess this is me saying the powers-that-be should make that effort.

Getting diagnosed as an adult is hard enough, and its even harder for women, POC, and other under-diagnosed groups. We’re up against uninformed medical professionals, social conditioning, harmful stereotypes, and all kinds of other complex forces. All those things will take a lot of time, and probably a lot of money, to fix.

By comparison, revising wording on some assessment questions seems pretty doable.

1. I cannot express how many times I have been called a “smartass” for answering questions in this way IRL. Being a smartass is always so far from my intention that it usually leaves me feeling more like a dumbass. See “One man’s explanation is another man’s excuse.”