Nine: The value of self diagnosis
Why do many autistic people self diagnose, but then also seek a formal diagnosis?
There was a dialog on twitter the other day that made me reflect on my own diagnostic process and how it was similar to patterns I’ve seen other late-diagnosed autistic folks describe. First, I self assessed by doing a lot of research and reading, taking numerous autism tests online, talking to other autistic folks, and building a strong sense of identification with what I discovered. I think this is an important point - self-diagnosis is not something that is simple or just a matter of saying, “I think I’m autistic”. It’s a months-long (or longer) emotional journey of understanding and self acceptance that can be both joyful and painful, filled both with encouragement and skepticism, relief and self doubt.
After I spent months thinking, researching, taking self assessments, and talking to other autistic folks, I didn’t come out and say, “I’m autistic!” Instead I thought, “I need to know if I’m really autistic”. My next step was to figure out how to make an appointment with a doctor who had experience diagnosing autism in adults (people who have spent a lifetime masking their autistic traits, trying to fit in, feeling ashamed for who they are, and trying to show up as someone else). This is where I feel like I was extremely lucky compared to other stories I’ve heard. I emailed my local Autism Society (at this point I was unaware of the autistic community on twitter and not informed about any of the issues around needing to vet autism organizations to see if they are autistic-led). The Autism Society said they had a year-long waiting list for assessment, but referred me to a local psychologist in private practice who specializes in adult diagnosis. I emailed him, and made an appointment for three months out. I have insurance and had no difficulty paying for the process (about $1000 USD). I understand that many people are not so fortunate to be able to access and pay for an assessment, and that could be a huge barrier to formal diagnosis.
Nothing could have prepared me for the first of two four-hour sessions with the psychologist. My mother and I went together, because the doctor wanted to interview her privately to ask questions about my childhood as part of the assessment. As we progressed into the interview, my mother and I both recoiled a bit and the attitude of the doctor.
He appeared highly skeptical of adult diagnosis and seemed suspicious about why anyone would seek it (he suggested many people are doing it so they can collect disability payments from the government).
He made disparaging comments about other patients.
He elaborated on every question he asked by giving the most extreme examples of behavior imaginable, cutting off my replies to say things like, “But were you banging your head into the wall repeatedly?” As if anything short of that wasn’t “autistic enough”.
He made comments like, “I see these TED Talks with people who are supposedly autistic, and I am absolutely certain that they are not autistic!” (ironically, he also stressed the importance of the diagnostic process and how nuanced it was, not realizing that his comments about TED Talks undermined this because he was apparently comfortable doing armchair diagnosis from an 8 minute video clip of a highly rehearsed speech).
With almost every question, we would digress into a long story about himself or his sister that seemed totally irrelevant and prolonged the process significantly.
After this session was over, my mom and I looked at each other as we walked back to the car in exasperation. “That was weird”, I said, not having any other words. My mom asked if I was going to return for the second session. She pointed out that no matter what his diagnosis ended up being, that she probably wouldn’t trust it because she couldn’t respect him as a professional given his behavior. I was immediately thinking that I’d have to find a new doctor, get on another waiting list, and go through the whole process again. The likelihood of me gathering enough “executive function” to do that, I knew, was slim.
And then I thought, “What’s the point of diagnosis anyway?” If diagnosis is such a fickle thing that one doctor might say, “Yes, I think you’re autistic” and another doctor might say, “No, I don’t think you are autistic”, then is it really meaningful? And if it’s so subjective, what are doctors basing their opinions on? My sense was that this doctor saw himself as a gatekeeper, as a kind of protector of the integrity of the diagnosis. He didn’t want to water down the definition of autism by diagnosing people who didn’t seem autistic on the surface so that it would retain some meaning for the people who were more “obviously autistic”.
But there was another feeling that I couldn’t quite dismiss. From the first moment I spoke with this doctor on the phone, my sense was that he himself was autistic. The way he perseverated on details, the way he kept talking about himself and his own life, the way he fixated, the loudness of his voice, the awkwardness of his questions and way of interacting. I assumed he was aware of this, but he made no mention of it during our interview. I’m not sure if it was because I felt I sort of related to him, or something else, but I didn’t want to just walk away. I decided to send him an email to see how he would respond. This is what I wrote:
Reflecting on our session on June 9, I wanted to let you know that during the session I felt uncomfortable with some of your comments and questions that were unrelated to the screening. If you are interested in feedback, I would be happy to share some examples of this.
Aside from that, my overall sense is that your questions were focused on the more severe manifestations of the autism spectrum in addition to other mental illnesses we discussed in the screening. My case is clearly not an extreme case. In seeking this diagnosis, I am looking to better understand myself and how my brain works; I am not seeking any kind of social service or support.
With that in mind, I’m actually not sure if it makes sense to continue the process.
Within minutes, my phone rang. I thought it might be the doctor, but I didn’t feel ready to talk to him, so I let it ring. He left a long voicemail, which I was a bit nervous to listen to. When I was ready, I played the voicemail and found that he had quite a different tone. He was extremely apologetic, he acknowledged and took accountability for the harm that he caused, and he expressed a sincere desire to talk. I appreciated that, and so I called him back. We spoke for over an hour, quite candidly. He was receptive to the feedback, acknowledged that he needed to do better, and expressed concern that I thought he may have biased my mother’s answers to his questions by giving her such extreme examples. He also explained his intention was to illustrate the range of the spectrum, not just focus on one end of it (I told him he was not successful). After our conversation, I was still skeptical of the value of the diagnosis, but I decided to continue the process.
The next step was for me, my wife, and my mother to all complete a series of assessments about me. Interestingly, the ones I completed were the same ones I had found online. I would then do another four hour session with the doctor by myself, and he would also interview my wife. After that, he would review all the notes and assessments and I would return to his office for the diagnosis a few weeks later.
On the second visit, he was again very apologetic and also thankful for the feedback I had given him. As he explained his process to me, and as I watched him respond to the feedback, I felt more certain that he was also autistic. Although I was quite offended and put off by this man, I also felt I could relate to him. I felt he was like me, in a way. (I realize I can’t diagnose someone from a few conversations, but I do think autistic people have a kind of “autdar” for one another).
I went into the second session with more of a strategy. With the first session, my attitude had been, “I’m just going to respond to his questions and trust that he’ll make an objective assessment and let me know what the right label for my condition is.” But in this second session, I realized that I had to explain to him in more detail the thoughts that underlied my actions and behaviors, both as a child and now. I understood more clearly that the diagnostic questions only got at the surface - they only examined the observable actions. They didn’t account for deliberate attempts to suppress my natural instincts (masking), or the internal deliberations that accompanied the actions. I realized that I had to more vividly illustrate for him what I saw in all my research that made me think I might be autistic. He wasn’t going to just figure it out, I had to explain it explicitly and connect the dots for him.
And that brings me to the twitter thread that spawned this post: I don’t think there is any way the doctor would have concluded I was autistic if I hadn’t first self-diagnosed. Self diagnosis gave me the language, the insight about myself, the ability to articulate my experiences, in a way that would help the doctor align my observations with the diagnostic criteria. Autism is far more complex than the stereotypes about it. The research that doctors study and are trained with covers only a narrow segment of the spectrum. The way my autism presents, it wouldn’t be picked up with the structure and format of the diagnostic process.
In the end, it wasn’t just the way I explained things in the second session that led the doctor to diagnose me as autistic. It was that, plus my self assessments (which significantly passed the threshold for diagnosis), and his observations. He stressed the importance of “triangulating'' different sources of information and not relying too much on just one. He stressed repeatedly that in his 40+ years of diagnosing autism, he was extremely cautious not to diagnose unless he was absolutely confident, unless he felt that there were multiple “sources of evidence” indicating a diagnosis.
Still, I left the process feeling like I did not find in the diagnosis what I had thought I might find. The diagnosis didn’t give me anything I couldn’t find on my own. On some level, I suppose it “validates” my self-diagnosis, but on the other hand it just made me skeptical of the integrity of the process itself. So, I didn’t leave with the feeling of certainty I thought I would come away with if I got a diagnosis. I didn’t leave with the confidence to shout my diagnosis from the rooftops of social media as I imagined I might. I didn’t come away with a desire to reach out to all my old friends and say, “Guess what?” And then hear them say, “Oh, wow, that explains it!”.
I’m left with two conflicting thoughts. On the one hand, I feel like the diagnosis is a silly formality that is highly subjective and biased, and not really worth the weight that society and the medical establishment bestow on it. On the other hand, on some level, I feel better having the diagnosis; it makes me feel more valid, more legitimate, more confident in saying “I’m autistic”. I know that regardless of the value I place on the diagnosis, that if I tell anyone else I’m autistic and don’t mention the fact that I have been diagnosed officially by an autism doctor with forty years of experience diagnosing autism, that they will be skeptical and not really believe I am autistic. They will think I’m just seeking attention, or trying to find an excuse for my behavior, or trying to give myself an easy way out of participating in the expectations of society.
It’s as if I only have the right to question the validity of the diagnosis because I have the diagnosis. If I didn’t have it, and I questioned it, I’m sure people would say, “You are only questioning it because you don’t have it!” I don’t feel there is a conclusion to this question - only an endless circle that leads back to the beginning again and again. And so, to return to the twitter thread that prompted me to write this, I would paraphrase @MxOolong and agree that I have some really complex and nuanced ideas about self identification.
Woah, that was a strange diagnosis experience. I'm sorry, that sounds incredibly unhelpful. But you write about it very well, and it sounds like your initial self-diagnosis has given you some self understanding at least even if the self doubt etc is still there.
I'm always amazed by the autistic advocates on twitter who speak with such authority about the various topics that we discuss on there. I am always gathering data and rarely arriving at final position.
I love reading these, thanks for sharing.