Family first
I only become aware of the autism spectrum when I was trying to understand certain things about our family and a lecture I listened to laid out some of the behavioral and psychological aspects of autism. As I had always done when a thing intrigued me, I started researching obsessively.
My search led me to tentatively and then determinedly self-diagnose one of our children, even though the first formal evaluation he had came back negative for autism, concluding with “unspecified anxiety disorder” instead. Rather than relief, we felt we were no closer to finding insight or solutions to our problems. There is no community built around “unspecified anxiety disorder” and the solutions offered seemed vaguely like they belonged to someone else.
That evaluation set us back, causing us to question everything we thought we had learned. Had we been mistaken in identifying things we had observed and read about? Or had our observations not been given sufficient weight? In hindsight, the process of determining if diagnostic criteria are met involves a judgement call by the evaluator. This is affected by their specialty, educational background, and experience. The next time the same child was evaluated, we searched for someone that specialized in “high functioning” autism. The evaluator spotted his instantaneous joyous smile that lit up the room and subsequent total absorption in the Toy Story toys in her office and said “It’s because he has Asperger’s and that is his special interest.” (Note: at that time, our son was almost absolutely monomaniacally obsessed with Toy Story.) Same behavior, different interpretation: after an initial meeting with us to hear our concerns, two sessions of testing, and a handful of questionnaires we filled out, our son was diagnosed with autism.
Now… Me?
I hadn’t given up research after his first evaluation and my interest waxed hotter when the next came back positive. I tended to find some of it relatable. Indeed, I had started daring even to say I might have autistic traits months before after I started asking Google questions like “who collects obsessions like me” and found the only meaningful results were links to Lonelyplanet.net, a large Asperger’s forum. After reflection about a socially awkward moment when I had confessed my fascination with, among other things, intelligent women to a nice lady I had just met, I started collecting data about my possible autistic traits in a Google doc. By the time we came to our son’s second evaluation 4 months later, I had collected 9 pages. I told the evaluator that I had promised not to make the appointment about me, but I was also interested in having an evaluation. About a year of careful reflection, when I was finally able to have my own appointment, it had reached 19 pages.
A week in advance of my appointment, I shared the document with the neuropsychologist and returned several questionnaires she had sent me. I discovered to my surprise that I had just as much anticipatory anxiety about appointments as anyone else. I didn’t want to be a bad patient that would only listen to what I wanted to hear, but I honestly didn’t know what I would do if she disagreed with my conclusions. I resolved and prayed that I wouldn’t be rude or argumentative. I was trying so hard to be circumspect and open minded that I didn’t even prepare a list of questions beforehand, which is just not how I roll.
In the end, there was no dramatic scene: she didn’t argue with me at all, but agreed that I had done my research well and was indeed on the spectrum, though I had apparently managed to find a lot of support even before knowing. My wife and I had a good, thought provoking conversation with her and left with a strong feeling of confirmation.
All of this probably prompts the question, “what is so different about you that you merit an autism diagnosis?” I shall try to briefly answer this question in part 3 of this series, “What’s it like?“
Read the other two parts of this series: “The History of Autism” and “What’s it like?“
I suspect the route to diagnosis is different all over the world. It would be ideal if only medical doctors who have specialised in neuropsychiatry and neurodevelopmental conditions were to carry out assessments for autism, but there are not nearly enough of them everywhere. I have seen trained psychiatrists miss a clearly autistic adult diagnosis, because they neglect the early developmental history of the patient, focusing more on the difficulties the patient has experienced as an adult.
I have also seen psychologists jump too eagerly to make diagnoses of autism in schizoid or anakastic personality disorders, for the same reason. It is often a tortuous journey to diagnosis, as you outlined in your essay, more convoluted for some than for others.
However. like you, I have hope for the future, that things will ge better.