This post is about challenges I have observed with the autism diagnostic process. In writing this, I recognize that I have a lot of privilege as a white, cis-gendered male, because it is well established that the diagnostic process is biased toward people like me. I also have good health insurance and can afford all the monetary costs associated with diagnosis. In addition, I was lucky to find a local doctor who specializes in adult diagnosis, who had only a three month wait for my first appointment. For someone without my privileges, the process would be significantly more challenging, or impossible.
When I embarked on the process of being diagnosed autistic, I thought I was seeking a definitive answer, or explanation, for who I am, why I behave the way I do, why things that seem easy for other people feel so hard for me, and why I have so many challenges in relationships with other people. I wanted to be able to understand the root cause of all the pain, rejection, struggles, and oddities that I have observed in myself. I wanted a doctor - a credentialed professional with years of experience diagnosing people like me - to test me and then say, “This is what you have and it explains the following things about your character, your life, and how you exist in the world.” At least, I think that’s what I wanted.
The diagnostic process is long and involves several components. I had learned this from all the Googling I had done in the year before I finally had an appointment (only three months of that year were waiting for an appointment, the rest was researching, doing self assessments, and thinking about whether it made sense for me to pursue a diagnosis). There were several things about the process, once I met the doctor, that surprised me and left me with a feeling of uncertainty, rather than the definitive answer that I thought would be so satisfying:
The process is subjective - there is no definitive test or answer to the question “Am I autistic?” The doctor is making a subjective judgement based on your (and your parents’, and other people’s) subjective answers to questions about your thoughts and behaviors, now and in the distant past. I came away from my first meeting with the doctor thinking that whether this doctor concluded I was autistic or not, I could probably see another doctor who might come to a different conclusion. That felt weird to me.
The process involves bias in several ways:
Much of the doctor’s investigation is in the form of conversation. How the doctor phrases things, the examples the doctor uses to explain questions, the tone of the doctor’s voice, and the doctor’s body language can all influence or bias the person answering the questions (in my case, me, my mother, and my wife).
The doctor, as a human, also has their own biases that they bring to the process. They may have more experience diagnosing people “on one end” of the spectrum. They may be skeptical about people who seek a diagnosis later in life (Why now? What do you really want? Are you just trying to get disability benefits?) They might make snap judgements based on your posture, ability to make eye contact, gate, or hand movements when you walk into the room and sit down for the first time.
And, of course, the diagnostic criteria itself (and all the research that underlies it) are biased towards white male children whose autistic characteristics manifest in very specific ways. I won’t go into that topic here, but I encourage folks to read up on it (this is one starting point). In my case, this bias means I’m more likely, not less likely, to be diagnosed autistic.
The process is based on memory. Your memory, and your parent’s memory, are key elements of adult diagnosis because the diagnosis requires that the autistic characteristics were manifest in early childhood. Autism is how your brain works, and if you are autistic, you are autistic from birth (you can’t develop autism later in life).
All of these elements came up as questions in my diagnosis. My memories of childhood are colored by my perspective as an adult. And, of course, how accurate are those memories? Even the ones that are etched in mind with incredible, vivid detail, I know might be completely fabricated, or materially altered, by my imagination. We see examples of people remembering the past differently from how it “actually” happened all the time (including, sadly, by the people who write history books for children, though that’s a different topic). My mother’s memories of my childhood, though presumably more reliable than my own because she was an adult at the time, are equally subject to the limits of human recall. If I think about everything happening in my parent’s life when I was a small child (living in a new, strange town, in a new part of the country, dealing with the challenges of small children, money stress, figuring out careers, complex family issues), I can appreciate that nuanced memories of very specific and subtle behaviors may be hard to recall. I have a five year old daughter now. I find it challenging to remember details from when she was three. I can’t imagine what those memories will be like forty years from now. Of course, now we have video cameras in our pockets that record things I store them in perpetuity in the cloud. When I was a kid, most people didn’t have camcorders. And home movies from that era are stored on rapidly deteriorating VHS tapes that you probably don’t have a player for.
I have taken many self-assessments, several of them multiple times. Some of these were administered by the doctor, some I found online (though I was surprised to learn the ones you find online are the exact same ones the doctor uses, including the scoring methodology). If you look at the results of my self-assessments, the picture seems remarkably clear. It screams “HOLY COW THIS GUY IS SUPER AUTISTIC!” I have re-taken self-assessments because the score was so high I thought I must have been exaggerating, or that I somehow “did it wrong”, and on subsequent attempts I deliberately tried to “tone it down” and select more conservative answers. And still the results scream “AUTISTIC!!”
But if you look at the assessments that my wife and mother completed, the results are more subtle. The assessments they completed were of observations of my behavior. In the case of my mom, from her memory of my childhood, and in the case of my wife her daily experience living with me. Of course, they only see what I show them. They don’t see (or hear) what is happening in my head that leads to the behavior they observe. But, then again, when I was a child would I have been able to “mask” or control my behavior the way I do now? Probably not, but that brings up the memory problem again. And, of course, “it’s a spectrum”. I never had seemingly sporadic hand movements, I didn’t rock back and forth, and (according to my mom) I was appropriately verbal (though I believe I had “marked impairment in the ability to initiate or sustain a conversation with others”1, but that could only be confirmed by 40+ year old memories).
The doctor has to weigh all these different inputs, all these different pieces of subjective information, and make their own subjective judgment based on the flawed evidence in front of them. In my case the result was a report more than 30 pages long. The ultimate conclusion is that I am autistic, without accompanying intellectual disability. The report doesn’t say this, but verbally the doctor emphasized “in its mildest form” (whatever that means). The doctor also said that, if he only had his interview with my mom to go by, he would not have diagnosed me as autistic. But, after reviewing the assessments, and based on the seven or so hours of dialog that we had (spread over two in person interviews and a few phone calls), he felt there was “more than enough evidence” to warrant a diagnosis.
The impression the doctor gave me was that he takes autism diagnosis in adults extremely seriously (which of course I hope he would), and he often does not diagnose adults whom he assesses. Throughout the diagnostic process, he is screening for other conditions that he wants to rule out. He presented himself as skeptical about the various YouTube videos and other online testimonials he’s seen from people who “claim’ to be autistic. The fact that he had this attitude was disappointing and off-putting to me, but I would think it would also prompt me to be more confident in his diagnosis (because of his skepticism and hesitation to “hand them out”).
But still, I feel that my diagnosis is somehow caveated. I wonder if I need to get a second, or third, opinion, just to be sure. But if I did that, would I believe those any more than I believe this one? I had imagined, before getting my diagnosis, that if I were to receive a diagnosis I would be comfortable openly sharing it. And yet it has been hard for me to share. I am writing these posts from an anonymous account, which I had not imagined I would want to do. I don’t think this is because I want to keep the fact that I am autistic a secret, but more because I worry people will doubt the validity of my diagnosis. Am I really autistic? Really? I wonder if I somehow fooled the doctor. If I was just making up answers to his questions to align with what I thought would lead him toward a diagnosis. But, as I explained to the doctor in our first meeting, I wasn’t “hoping” to get an autism diagnosis - I was looking for potential explanations and was open to the doctor telling me it wasn’t autism that explained the questions I had.
So, why do I have this hesitation? Am I not as ready as I thought I was to accept the diagnosis myself? Do I need more time to sit with it before I fully realize its truth? Or did I become disillusioned with the diagnostic process for the reasons discussed above, and therefore have I concluded that the entire concept of diagnosis is meaningless? I don’t know what the answer is at this point. But, I plan to keep writing, to keep connecting with autistic people, and to keep listening to my body, and my mind, as I try to deepen my understanding of myself and how I navigate the world.
Autism Society. “DSM IV Diagnostic Classifications.” Autism Society, 2013, www.autism-society.org/archive/dsm-iv-diagnostic-classifications.
I relate a lot to this. I often think I am just pretending to be autistic to get a bit of a break for how difficult I find life. And nobody around me sees me as I see myself. Of course they also don't have the experience of actually being me. They don't see all the errors and mix-ups. And when they do they often find them amusing or endearing. Naturally I pretend to find it amusing too, in order to save face...
It's strange isn't it?
I had enough evidence of my difference to seek diagnosis. But getting it didn't totally prove to me that I really am different.
Maybe this is just more evidence of how my brain works. How hard it finds it to settle on a position.
Have you read about the struggle for a sense of self in the autistic person? Have you experienced it?
I have. And I guess it is continuing as I go through this new experience of discovering I qualify for autistic diagnosis.
It was the same when I was getting sober via AA. And of course I started a blog about it and wrote hundreds and thousands of words.
I guess we are both entitled to the label if we want it. Why do we want it? Now there's a question. And I mustn't speak for you.
I wanted it because I wanted to understand what was wrong with me. Cos it was clear that something was.
I like the idea that I run on a different operating system. That's friendly.
Possibly another way of saying there's something wrong with me maybe. But kinder. And kindness really matters.
The people who love me who don't see me as having so much wrong as I feel in myself will all attest to the fact that I think too much.
Mostly I think they don't think enough.
Anyhow, I'm with you. And it's quite exhausting. I hope you find some peace with it.
I now say I'm autistic publicly. I want reasonable adjustments! I need them, in fact. So yep, I'm taking the diagnosis and running with it.
But also doubting it.
Especially cos of the narrative that the spectrum doesn't mean anything anymore.
It's confusing. The hallmark of my life has been confusion. The more I learn the less I know.
Anywho, gotta go n live my life now. Thanks for writing this. 🤖💙