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This Common Diagnostic Assessment Tool Is Failing Adults With Suspected Autism. Here's How.

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If pressed to describe my experience with the ADOS-2 assessment for autism spectrum disorder (ASD) in a single word, I would call it “humiliating.”

Humiliation doesn’t quite cover it, though. At 30 years old, following a lifetime of bullying and struggles in almost every facet of my life, I sought an autism assessment as a way of trying to understand myself a little bit better. Maybe, just maybe, that understanding might also come with a little self-acceptance, a quality that I dearly need. So, I took the leap. I fought to be taken seriously. When you’re an adult seeking an autism assessment, it feels a little like everything is against you. Adults aren’t “supposed” to have autism, you see. Autism is just for children, or so the common thinking goes.

Let it be clear that I don’t know if I’m on the autism spectrum. I didn’t then, either. All I wanted was an answer and a chance at understanding. So after fighting for an appointment, I was offered an assessment through the health service’s Adult Autism Assessment Disorder Service. I was terrified — of course, I was — but I was hoping I would find the answers I sorely sought no matter what they would be.

My partner came with me as moral support, and I remember sitting in our car and counting down the seconds until I’d have to walk into my appointment, telling her I didn’t care what the outcome was; if it said I wasn’t autistic, then I’d trust in the process and seek answers elsewhere. If only that had been the case.

Have you heard of masking? I hadn’t until I even started seeking answers. I learned that autistic adults typically mask their symptoms — their social behaviors, their neurodiverse thinking — after a lifetime of just trying to appear neurotypical in a society that doesn’t always respond with kindness. When you’re thrown into a swimming pool and you can’t swim, you either learn or you drown, right? So what about when your mind works in a neurodiverse way and all you’ve known is being told you’re “different,” you’re “not normal,” and you must act “normal” or you’re going to be a target? Do you sink, or do you swim?

From the first moments of my assessment, I knew something was wrong. The woman told me that the test wasn’t exactly designed for adults. She asked me some questions about my upbringing, my family, my childhood. I told her all about the bullying I’d experienced, the social delay, and how, while my symptoms were stronger when I was a kid, I still experience many of the behavioral traits seen in ASD. Then came the practical part of the assessment.

This is where things get fuzzy for me, but they are viewed through the hot, seething lens of humiliation. Looking back at it causes the sickness to rise into my throat. I can feel it there like a fist.

I was given several basic shapes and asked to tell a story with them. I stared at the assessor. Was she being serious? I’m a creative person and could probably create a story out of two bits of stick and some twine if given enough time, but under the expectant stare of the assessor and the weight of shame pressing down on me, I couldn’t imagine what she possibly wanted me to do. I don’t remember the story I told. I think I pretended one of those shapes was a car. I was, after all, fresh from my drive to the assessment and wishing already that I was back in the car and speeding away from this den of shame.

Next, I was asked to take those basic shapes and fit them together, like a puzzle. There was no rhyme nor reason to it; they were just basic assorted shapes. I vaguely remember saying I didn’t know what to make, and she produced another shape or two that I could use if I wanted.

The memory skips, then, like traumatizing moments often do. What came next, though, is solidified in my memory and will likely be for all time.

She produced a children’s picture book: “Tuesday” by David Wiesner. It’s a 1991 almost wordless picture book for ages 3 and up. In it, frogs escape their ponds on flying lily pads and cause some mild chaos in a nearby town. In fact, it was made into an animated short, produced by Paul McCartney, and includes the voices of some pretty big Hollywood names. You can see the actual book below, though, and imagine the next part of my assessment journey along with me.

Page by page, I was asked to describe what was happening to the characters. What were they thinking? What emotions were they experiencing? Yes, the man who is eating his sandwich is surprised by the frogs. The frogs look happy to be flying on their lily pads. The turtle is scared. The police are confused.

Out of all the research I have done in preparation for this article, I found countless threads on other sites questioning the ADOS-2 (module 4) assessment. This is the module meant to diagnose autism in adults and yet here are myriad other people feeling patronized and humiliated by all aspects of their assessments, particularly this book and its associated questions. It felt reassuring to know I’m not the only one who felt this way, but it begs the question: In what world was this test meant to assess the likelihood of autism spectrum disorder in an adult who is perfectly capable of understanding a picture book? Some people in those link threads, among others, have their own children. They likely read those very same types of books to their children without struggle. And they, like me, have been masking their autism traits for years just to keep swimming in a neurotypical society that often sees them as “wrong” — a society that does not accept them, accept us, for our differences.

I hesitate to list my own proposed signs that I may be on the autism spectrum, but of those symptoms commonly listed, I exhibit the majority in the privacy of my daily life. Many were even more prevalent in childhood. I took things extremely literally. I had highly focused interests. I was insensitive, and I often still am without initially understanding how. I behaved extremely strangely, thinking it made me funny and not a target. Now, as an adult, I am highly anxious, sensitive to sounds, and easily overwhelmed. I struggle with slightly changed plans (even in the positive) and emotional meltdowns. While each of these components taken separately point toward other disorders, they paint a potentially different picture when taken together.

In case you’re wondering: no, I do not have autism spectrum disorder, at least not according to that assessment. My assessment report states that my “use of words or phrases tended to be more formal but … not obviously odd. Eye contact was used throughout … to initiate, terminate and regulate social interaction.”

Adults deserve assessment and we deserve to be taken seriously without being made to feel humiliated in the process.

Let it be known that eye contact can be deeply uncomfortable for me if I don’t know the person and I was, indeed, deeply uncomfortable with it throughout. But, that could be that pesky masking behavior, again.

The report states that I “spontaneously offered information about … thoughts, feelings, or experiences,” and “… there was some creativity demonstrated when an opportunity was presented however objects were used in a concrete fashion. There was a comfortable interaction between [Matt] and the examiner…”

I’m glad that she found our interaction comfortable because I certainly did not.

The report concludes:

“When considering results of all the comprehensive assessment [sic] undertaken, there were no deficits observed in social/emotional reciprocity or in non-verbal communicative behaviors used for social interaction. There was no evidence of historical deficits in development or maintaining relationships.”

I don’t know how I gave that impression, given my supplied history.

“There were some restricted or repetitive patterns of behavior, interests, or activities reported however none [were] observed. Whilst we acknowledge the difficulties narrated by [Matt] we have concluded that these difficulties do not suggest an underlying ASD.”

I have spent the three years since in a state of stunned sickness. I was so ready to accept the possibility that I’m on the autism spectrum — a spectrum that ranges from “mild” struggle to requiring substantial support — just like I was equally ready to accept the possibility that it’s not a good fit for me. However, I was only ready to accept this if it came from a place I knew I could trust, and not from an assessment that seems ill-fitting at best and critically flawed at worst. Adults mask their autism and it has long-term impacts. As a kid, my behaviors were odd, and I remain fairly certain that the results would have differed. I was a target throughout my school days until, it seems, I learned to hide parts of myself from others. I’m not the only one; we have articles from Mighty contributors who were also bullied due to autism and who are recovering from PTSD as a result.

I still don’t know if I’m on the spectrum. At this stage, I may never know, and I have to make my peace with that. I remain too scared of another encounter like the one described above. There’s only so much humiliation I can handle. And, while there exist other diagnostic tools, I’m fearful that any of them would be different. Even if I don’t have autism spectrum disorder, my experience with the ADOS-2 shows that it does not seem to be adequate for so-called “high-functioning” members of the autism community who are perfectly capable of describing emotions and social cues due to years of masking and learning. Adults deserve assessment and we deserve to be taken seriously without being made to feel humiliated in the process. The assessor’s own admittance that the test “wasn’t exactly designed for adults” attests to that, despite module 4 of the ADOS-2 being designed for exactly that — “for use with older adolescents and adults with fluent speech.”

“Perhaps self-acceptance is what we really need more than a diagnostic label.”

I write this during the latter part of autism acceptance month. Perhaps that’s exactly what I need to cultivate: self-acceptance of my behaviors as a bullied, abused child who clumsily grew into a bullied, abused adult. Perhaps that’s exactly what we all need; with more and more people self-diagnosed as autistic these days, perhaps self-acceptance is what we really need more than a diagnostic label as a means toward understanding. If we begin to accept ourselves, perhaps society will catch up and accept us too, in time.

Getty image by Thomas Barwick.

Originally published: April 26, 2022
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