In 2005, at the age of 30, I began therapy and received a diagnosis of Asperger’s Syndrome (now Autism Spectrum Disorder). It caught me off guard, because I had gone in specifically to receive help with depression and social anxiety. A spectrum diagnosis was not on my radar, and it took me over a year to fully come to terms with the reality of it.
The first psychologist I spoke with made the diagnosis within a few sessions. The speed with which he reached this conclusion made me suspicious. As part of this process, I was also seeing a psychiatrist, to see if medication could help get the depression under control. She added her agreement with the spectrum diagnosis. It was a lot to absorb; I remained hesitant to fully accept the information.
Due to a personality conflict, I switched to a second psychologist. It was explained to me that she was an autism specialist; I thought a third opinion from someone with more autism experience and relevant training would help clarify the situation.
Instead of leaping to a conclusion, we spoke for many months before she confirmed the diagnosis. She was careful, thoughtful. On the day she explained her reasons for making the diagnosis, she frequently paused to ask if I had questions. It was pretty clear to me that her goal was not just to apply a label…her primary goal was to walk me through the process so that I could better understand my life and sense of self. At the end of that first year of discussions, I finally accepted that the diagnosis was accurate.
I then decided to tell my family. I was 31…I had experienced a lifetime of challenges with sensory issues and social pragmatics. A whole lot of social milestones had gone by, unmet. Aversions to lights and tactile sensations were a daily struggle. And without a diagnosis- without a way to make sense of these differences- my family had never really had a way to understand what was going on.
Growing up, a lot of things about me were clearly different. And their reaction was to work on helping me hide these differences. There was a lot of pressure (polite, insistent pressure) to blend in, conceal aspects of my personality, mask the sensory issues and so on. They meant well…but they seemed worried that I might be perceived as “different”…and this made concealing those differences priority number one.
This led me to believe that they would be relieved by the autism diagnosis.
As I entered adulthood, I had become increasingly withdrawn…I had been socially isolating for a lot of years by the time I entered therapy. The family: increasingly concerned, perplexed. I thought learning of the diagnosis would be an epiphany for them; finally, a lot of things would make sense.
Instead, they refused to hear about it.
I described the diagnosis to my parents…I described the process I had recently gone through involving several mental health professionals and repeated confirmations. My parents reacted with silence…they were visibly uncomfortable. Finally, dad said, “This is a phase. You’re just trying on a new identity.” Mom said, “You’re just shy.” And that was it. They refused to discuss it further. I brought up the topic a few more times, tried different approaches…they cut me off, changed topics. It’s just not something they are willing to discuss or even hear.
Sometimes, online, I see people questioning the validity of self-diagnoses. I think there is a general impression that official diagnoses are “real” and self-diagnoses are questionable…maybe real, maybe not, but they are somehow “less than”.
And every time I see that skepticism, I’m reminded of my parents. Thing is: they weren’t skeptical of the diagnosis. It was official. It wasn’t up for debate. They were averse to hearing about it because it meant my differences were no longer something they could ignore.
That aversion to difference…that reluctance to allow people the opportunity to be, openly and fully, who they are…that’s what I see behind the skepticism of self-diagnoses. Because I know without any question: you can get the so-called “real”, official diagnosis…and people will still find a way to belittle it.
It’s not about official…it’s not about accuracy. It’s about self-advocacy. That’s what the diagnosis skeptics are really uncomfortable with.
Some might wonder, “Why self-diagnose when you can seek out the ‘real’ thing and know without any doubt?”
I suppose this works in theory, but the reality is that we are not currently doing a great job of consistently and accurately identifying autistic individuals.
Women are massively under-diagnosed- and often misdiagnosed. People of color are massively under-diagnosed- and often misdiagnosed. And that’s here in the US. I frequently hear from readers who live in countries where diagnoses are simply not available; where awareness and even the concept of a “spectrum” are non-existent.
Seeking an “official” diagnosis simply is not an option in all contexts, for all people. “Official” is privilege…on average, it tends to work a little better for white guys like me, who fit a narrow, outdated stereotype.
In a context like this, self-diagnosis is self-advocacy.
And I think that’s what the skeptics really target. I think that’s what they really can’t stand. Sense of self defined by the individual, from the inside out, with a full understanding of who they are…the skeptics instinctively want to shut this process down.
I am not defending autism self-diagnosis as someone who self-diagnosed. I’m saying this precisely because I received an official diagnosis and still found that people were skeptical and dismissive…of the label, of me, of who I am.
So much for official. It can be necessary in order to gain access to appropriate supports and services. But it’s not what the self-diagnosis skeptics claim it is…it’s not some iron-clad, legitimizing concept. For too many, official is just a cover for their fear of self-advocacy.