Designing autistic assessment tools for actually autistic people?

One of the things that confuses me is when diagnostic tools for autism are designed without consideration of what it’s like to be autistic. When I went through my assessment for being diagnosed with ADHD there were a basic screening for autism too. One of the questions was if I found it hard to understand what other people were feeling. I answered that I didn’t find it hard, even though I think other people are confusing most of the times. Why?

Because I’ve been working so hard all of my life to figure other people out. I’ve read, practised, analyzed, been in excessive therapy and concluded stuff. Compared to when I was a kid, people aren’t nearly half as confusing to me now. Today, I can intellectually figure out what other people think and feel most of the times. This influenced my answer but it was not the only thing. Consider the fact that I have a tendency to interpret questions literally. Also, consider what it’s like growing up and feeling constantly misunderstood. I was under the impression that nobody was very good at understanding anybody else, because most people were unable to understand me and my feelings. What to you think these three facts together resulted in?

The question wasn’t phrased with any reference to my childhood. The question said nothing about who I was supposed to compare myself with or how hard I had to work to understand other people. So I answered that I didn’t have any difficulties. Because yes, I have worked myself into exhaustion trying to understand people most of my life, but since everybody told me that it’s normal to be tired I thought that this state of constant exhaustion was what life was all about. That I was just lazy, unmotivated and demanded too much from life since I couldn’t just live with it.

I don’t think this is a particularly uncommon experience for people seeking diagnosis as adults. I’ve read enough storied from other autistic people by now to know that there are other people who share my experiences. So why isn’t this taken into consideration in questionnaires?



4 thoughts on “Designing autistic assessment tools for actually autistic people?

  1. I think this is beautifully said. I didn’t experience this kind of problems when I got my diagnosis. They kept asking about my child hood years, but I sure think they could have explained things better if they only had more experience with autistic people. In the end, I convinced those doctors and councellors that I really have autism, and they agreed.

    Liked by 1 person

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