For part 2 of the autistic community’s reaction to the Autism Spectrum Quotient test (AQ), I’ve interviewed three people from the autistic community about their reactions to the world’s most commonly-used autism screening tool. To learn more about this, read part one of this series.
The internal dialogue from autistics reveals a cavernous divide between the perception of the test creators and the autistic test takers.
Question 33: When I talk on the phone, I’m not sure when it’s my turn to speak – Wendy Katz Âû
I used to love talking on the phone as a child because it was WAY better than trying to focus on eye contact. Phone conversations can still be challenging though. Here’s why.
When I talk to people in person, I used to try to feel the rhythm of the interaction, even when I wasn’t good at non-verbal visual cues. It was almost like singing and trying to keep the beat of a song to intuit when to speak.
But on the phone, it is harder to feel and gauge that rhythm. All you have is the other person’s breathing. Often when I try to move to fill a silence, the other person moves at the same time. Then we both go quiet and it happens again. There is less of a lifeforce or a rhythm to it. Sometimes you think a person is done speaking and they just pause for a second and keep going, so you end up interrupting.
Other times I get the feeling they are waiting for me to say something, but since I couldn’t read between the verbal lines of the communication, I have no idea what.
Anyway, I get into great rhythms with people I know well, but struggle with acquaintances and strangers. Chatting through text is so much easier and less tiring if I don’t know you well! Sometimes I wonder if neurotypicals ever have these experiences.
Question 27: I find it easy to “read between the lines” when someone is talking to me – Daniel Maskit
I feel I have sat through many presentations at work where there didn’t actually seem to be any content. There were things said that seemed to mean something to everyone else, but I never understand the purpose of these meetings.
So I guess that is a long-winded way of saying ‘what lines?’ and what do you mean by ‘between?’ Why can’t neurotypical people just say what they mean? If you want to tell me that you think I did something wrong, why do you instead tell me that I did something else right? And expect me to know that that was meant to be negative feedback?
I mean, seriously, you are saying something negative, you want it to be heard as negative, but you say it as if it were positive? And this makes you ‘compassionate.’ Whereas when I want to say something negative, which I want to be heard as negative, I say it as if it were negative. And that makes me hard to work with?
What the actual f*&k?
I understand, intellectually, that neurotypical people somehow take the negative thing stated as a positive thing to be a negative thing but said in a way that upsets them less than when I tell them a negative thing stated as a negative thing but I don’t understand why this matters so much to them.
Perhaps some number of neurotypical people will read the above and get a sense of how mystified we autistics are by many of their ‘rules of social conduct.’
Question 14: I find making up stories easy – River
I totally find it easy, and I love to do it! There’s so many possibilities for each and every thing, almost infinite possibilities! I like to think of some of the most enjoyable possibilities, the ones that feel nicest to me, and see the patterns of where they could connect and use those connection points to make stories.
People call me “whimsical.” It’s a huge part of how I cope in the world, because otherwise everything is just so chaotic and separate and I can’t bear it; I need the patterns, even if I have to make them up myself.
However, it’s a bit difficult to do on demand, and with stuff I don’t care about, like I’ve encountered in testing: “Make up a story about this feather, this sponge, and this crayon.” Bah, boring. My brain doesn’t leap for that; it slogs. I don’t care about that feather, that sponge, and that crayon. Let me pick my topics and I’ll spin you a tale!
Simple Questions, Complex People
Questions like these could be answered as “almost always,” or “almost never,” or just about anything in between, yet a person’s life and access to verification about their neurotype rides– not on their complicated interactions with the questions– but on what bubbles they pencil in on the paper.
Should the ability to create stories be something used to screen someone in, or screen them out? Do autistics need to sell themselves short, downplay their talents, and break themselves into an “almost always” or “almost never” in order to get the diagnosis– and with it the support and accommodations they need to thrive?
The widespread prevalence of this questionnaire is a metaphor for autistic existence, though: the majority of people do things because “it’s the most common,” and not because it makes the most sense, and autistic people suffer because others prefer what is common.
Click here to read part 3 of this series.
- Book Review: I Will Die on This Hill - January 6, 2023
- The political effort to separate autism from “severe autism” is misguided at best - November 12, 2021
- Spectrum 10k: The Fallacy of Genetic Autism Studies - September 3, 2021
I am really enjoying everyone’s reactions to the AQ – at least the ones I have seen and experienced thus far.
Lots of amusement; absurdity; skewing; satire/wit.
Even I prefer “what is common” or at least what is known; when it comes to stories.
And whimsy comes from patterns/is patterned? And people use whimsy to get away from patterns?
And there was a whole week of THINKING PERSON’S GUIDE TO AUTISM where people discussed their Zoom experiences …
Re Q27 “reading between the lines…”
I used to work for the RSPB (Royal Society for the Protection of Birds; a UK conservation charity). Each year we would have an annual appraisal of our work, and given clear feedback from colleagues we worked with in the form of ‘Stop Start Keep’:
– STOP doing ‘these’ things (eg “stop interrupting people in meetings if the door is shut; if you think the matter urgent, please inform the office manager instead”)
– START doing ‘these’ things (eg “start making a to-do list at the beginning of each day; it’ll help you focus on your priorities”)
– KEEP doing ‘these’ things (eg, “keep on answering the phone in the way you already do – you make customers feel great!”).
It can feel a little too upfront at first, especially if you’re not used to it (because of the culture nowadays of ‘sandwiching’ a negative comment between two positive ones) but it’s actually clear, helpful and effective. I wish all companies would take on a similar way of giving feedback (although not limit it to a once-yearly appraisal!).