The New (Ab)normal: On Being Diagnosed as an Adult with ASD

During my first meeting with the adult autism diagnostic specialist, we discussed how trendy high functioning autism / Asperger’s has become (it’s commonly referred to now as the new ADHD), and how this trend has driven more people than ever to seek diagnoses for their children and themselves. For many people, that search begins on the Internet, when they take one of the handful of interactive diagnostic indicators, such as The AQ Test, based on Baron-Cohen’s work. Sometimes, they stop by the forums on Wrong Planet or Reddit to ask whether that means they have it, and we always tell them the same thing. It’s one indicator, there are many related diagnoses, and only a professional can tell you for sure. The reason I had been so certain in my self-diagnosis is because psychology has been — at least since my undergraduate years — a special interest. When my son was diagnosed, I began to read autism research and literature continually. I had a good foundation in differential diagnoses by the time I sought an official diagnosis. And yet, I felt trepidation. What if I had been wrong? What if my self-understanding was not confirmed?

So that was my state of mind when, in our initial consultation, the assessment specialist (let’s call her Dr. L) and I agreed that Asperger’s is over-diagnosed — for my part because I wanted to assure her that I wasn’t seeking a diagnosis as a result of its trendiness and for her part, perhaps, because she wanted to prepare me to be disappointed. Dr. L explained how rigorous the testing process would be, and how much of it would seek to validate the different diagnostic dimensions that add up to autism through quantifiable means. There would be self-reports (covering everything from sensory processing to obsessive compulsivity to attention to mood) and a report from my spouse (someone who knew me well that I was permitted to choose). But there would be much more tests of reasoning and aptitude: IQ, attention, executive functioning, empathy (ability to recognize emotions on faces and by voice), space-time, reaction speed. My social interaction with the assistant conducting the tests was even being analyzed, as well as my mannerisms and grooming, as I discovered later from having read the lengthy report. Of all of these, Dr. L explained, the IQ test served as the foundation of everything else. What she would be looking for is variation between different areas of ability. The degree of variation would be indicative of autism.

By my choice, we completed all of the necessary testing within a single month (November 2013) over the course of 4 sessions that lasted 2 hours each. These were in addition to the initial interview and the self-reports, which I completed at home over another 3 hours or so. It had taken me nearly 3 months to initiate the first appointment (mid-August to end-October). Once testing had ended, it took another 3 months to get the report (February 2014). Dr. L met with me to explain the diagnosis and answer any questions I had, and then provided the report for pick-up about a week later.

The diagnosis: “Autism spectrum disorder; level one severity; without accompanying intellectual impairment; without accompanying language impairment [299.00].”

299.00 is the diagnostic code from the DSM-V for Autistic Spectrum Disorder. Autism Spectrum Disorders include Autistic Disorder (AD), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder (CDD), and Rett Syndrome. The DSM-V famously eliminated the Asperger’s diagnosis as a separate category in May 2013, leaving those who would have been diagnosed with Asperger’s (as my son had been in 2008) to be either diagnosed as autistic or left off the spectrum (perhaps with the new diagnosis of “social communication disorder” or SCD). At the same time, the DSM-V sought to create an autism spectrum diagnosis that was “more accurate, and medically and scientifically useful.” A research team led by Kristine Kulage (Director, Office of Scholarship and Research Development at Columbia Nursing) concluded from a literature review (Journal of Autism and Developmental Disorders, February 2014) that this change in the DSM-V has already resulted in a “statistically significant decrease in ASD diagnosis of 31 percent using the new manual, DSM-5, compared with the number of cases of ASD that would have been identified under the previous version of the manual, DSM-IV-TR.” The study also found that “Under DSM-5, there was a statistically significant decrease in AD diagnosis of 22 percent, compared with the fourth edition of the manual, the meta-analysis found. There was also a statistically significant decrease of 70 percent in diagnosis of PDD-NOS. While diagnosis of Asperger’s also declined under DSM-5, the reduction was not statistically significant. In addition, the study found that some individuals who no longer met the criteria for an ASD diagnosis under DSM-5 would also fail to meet the criteria for SCD.”

So here I am today, with this hard-won diagnosis. And how do I feel? Perhaps my strongest initial emotion was vindication. My previous employer had discriminated against me based on my autistic traits, which had sent me on a path to seeking diagnosis. I had been told I would not be accommodated in the workplace, because I only believed I was autistic. I had no proof. Now, even though I had resigned the position months before, I had proof.

I felt relieved, too. My son was diagnosed with Asperger’s just before entering the second grade. It was through helping with his diagnosis (I was his intimate other reporting to the child assessment psychologist) that I realized I was probably an Aspie. Over the intervening years (my son is now in the 7th grade), we had bonded over our identity as Aspies, with traits and behaviors that echo one another and other Aspies so well that we can’t help but feel like our own tribe. To be told that this did not apply to me would have hurt terribly; I would not have known how to explain it to him. And through having participated in autism advocacy and forums, I would have felt separated from a community I’ve come to value being a part of. There would have been a loss in all of this, as well as hit to my sense of self. When I learned what Asperger’s and high functioning autism were, not just on the surface (a list of traits) but in their daily lived experiences, I had truly had a moment of self-revelation. I had understood not only more about who I was, but also that the what of what I am had been shaping the who all along. Biology may not be destiny, but it does determine some of who we are and how we are in the world.

I do not feel that I have changed or lost myself through achieving a diagnosis, but I have not found myself, either. I am the same person I have always been. I just have a deeper sense of self-understanding as well as connection with others who are (ab)normal like me.

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