Diagnosis

Lately, people have been asking me about my informal diagnosis of ASD.  Unlike many adults, who experience their own diagnosis as empowering, I was devastated. Let me explain. As a teenager, all I ever wanted was to be invisible inside a crowd, and to some extent I succeeded. I recently attended a high school reunion from my school  – it wasn’t my year but mine was invited to one of the events.  I knew a couple of people but the majority of them were strangers to me – all of them.  And I was a stranger to them. Many knew me only in the context of my ex-husband’s memoir, “Look Me in the Eye.” I guess I was more successful at vanishing than I remembered.  Invisible, I was never a part of the group. I only had a few places where I felt comfortable in high school – in the AV Club and in my gym class, but the reasons why the typical place for trauma – gym class – was a place for comfort is another story – the nickel version is, it was a unique co-ed class that used “Outward Bound” as its model, so we did a lot of teamwork exercises instead of calisthenics. 

After high school, once I decided that invisibility was preventing me from any success, I started to be more outgoing, which was very difficult; my problems with recognizing others was certainly a handicap. I did my best to blend in – I tried to be social, chatting about inconsequential things as well as important issues. I thought that I had finally achieved “normalcy.” I made friends and tried very hard. Still, I was informally voted the geekiest teacher at a high school known for peculiarity.

The avalanche of awareness finally caught me – John asked me to participate in Simon Baron-Cohen’s longitudinal study of family members of people on the spectrum. Since Jack had been diagnosed at this point, I was needed as his mother. I logged in to the website and started answering questions honestly and to the best of my ability. I grew more and more uncomfortable as the instrument progressed. For the first time, the totality of what I had always considered “my quirks” was laid out. I couldn’t finish; I cried out, “I’m fucking autistic!” 

At first, I cried hysterically, then gradually acquiesed to the unacceptable. I blew my nose on some tissue (Puffs Plus, the only kind I like) and wiped my smeared glasses on my shirttail (all-cotton, of course).  I’ve done the same things every time emotion overcomes me, for whatever reason. Sometimes, the hysterical crying takes longer and is smearier. After a little while, I finished the survey. The results came quickly and were exactly what I now knew but feared; I was on the spectrum (but not officially diagnosed they warned – they don’t diagnose from this single albeit extensive survey but my scores were highly indicative of one who qualified for such a diagnosis), and did I have any family members who might also be willing to complete the survey? I called my brother, Ed, and asked him, me still sniffling, eyes leaking. He agreed, so I gave his contact information. An hour later, he called; he was one, too, and his scores were, if possible, even more indicative than mine! This gave me a little comfort; misery really does love company! We chatted for hours in the middle of the night - he lives on the west coast so it wasn’t so late for him.

In the aftermath, it took me months to be willing to start talking about it with others. I was immediately dismayed. My friend, Amy, said that she’s known for years but knew that any comment would only upset me, so she had kept silent. Matt said that he, too, had been diagnosed. Bill said his son had a formal diagnosis and he had an informal one. Apparently, most of my friends are on the spectrum, too - like has attracted like (or we just don't notice the traits that annoy neurotypicals). John told me of, the previous year, giving a book reading in Oregon. Ed came to the reading; a lady asked John if I was also on the spectrum. He referred the woman to Ed, as a brother would be more of an expert on me, who stood up and nodded. I was devastated all over again.  I thought that I had fooled everyone into thinking that I was “normal”. If my act hadn’t fooled anyone, was my life a failure? Rather like when my clothes got tight and yet I refused to consider that I might have gained weight, the only one I’d successfully fooled was myself. 

For me, knowledge was not empowering but it was undeniable. In the last few years, I’ve had to face some hard truths. I’m fat. I’m in a world that isn’t interested in hiring someone with my odd skill set. I’m female when most of the people who share my interests are male (and suspicious). I have chronic digestive problems. And I’m on the autism spectrum. The first, I might someday succeed in conquering, but the rest is just me. I’ve had to accept it – good and bad - or I would end up hating an integral part of myself. THAT is unacceptable. I don’t HAVE autism, I AM autism, just like I’m female. For me, trying to change those aspects would be mutilation. I even accept the visible scars on my body from my digestive battles. They are the outward symbols that I continue to survive. Eventually, the Truth will set you free.