When I failed to receive my adult autism diagnosis
Now that I have been able to emotionally detach from the events of July 17th, 2020, I thought that I would share my experience seeking an adult Autism Spectrum Condition (ASC) diagnosis.
I had an initial psychiatric evaluation with a noted child psychiatrist with one of the most esteemed healthcare-providing organizations in the San Francisco Bay area, which lasted 1.75 hours. He did a very superficial intake of my history which included my extensive information about my father’s family of whom my father and my great aunt were both likely autistics (hand flapping, humming, inflexible, locked into routines, multiple environmental sensitivities, and favorite topics, etc, etc).
I talked about my own childhood and being diagnosed in 1967 with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified), Infantile Schizophrenia, and not speaking until just after my 5th birthday—facilitated by speech therapy.
I discussed my environmental sensitivities, FTM transgenderism, social difficulties, dyspraxia, etc, etc. I also included that I have had two long marriages, but am now single and have been for 15 years. I didn’t get as far as being scheduled for an autism evaluation following this initial intake as this psychiatrist ended our Zoom Telehealth session with the following words:
“I don’t think you’re autistic. You’re too high functioning. You’ve been married twice and have been able to hold down jobs for more than one year,” stated the psychiatrist.
“Hmmmm…I disagree. But this wouldn’t be the first time that I have disagreed with someone holding a professional degree,” I replied. “Dr. So-and-So, Dr. Temple Grandin is also considered ‘high functioning’ by many. Do you think that she has autism?”
The psychiatrist gripped the edge of his seat cushion tightly, then arched his back, looked sharply to the left, and with a Duchenne smile replied, “I’ve known Temple many years.”
I hesitated for a few moments wondering if Dr. So-and-So would add more to his comment before I stated, “Dr. So-and-So, it’s nice that you’ve known Temple Grandin for many years, but you didn’t answer my question. Do you believe Dr. Temple Grandin is autistic?”
Dr. So-and-So repeated his physical tightening and preparation for a question that he clearly didn’t want to answer before stating, “I have a professional opinion about Temple.”
I hesitated again, waiting for additional words to appear, but none did. I replied, “So your answer to my question, ‘Do you think Dr. Temple Grandin is autistic?’ is that you hold a professional opinion about her?”
Dr. So-and-So replied, “Yes…that is my answer.”
Why do I think that I wasn’t identified as needing an autism evaluation according to Dr. So-and-So? I could write a dissertation on this topic. I feel that predominately it was “Extreme Male Brain Theory” being used to judge me since Dr. So-and-So follows Dr. Simon Baron-Cohen’s assertions about autism which disregards much of the presentations found in natal females and transgender men.
In addition, however, I believe that the secondary reason that I wasn’t diagnosed with autism is that I am obsolete at 58-years-old. My history includes the fact that I am physically disabled collecting monthly SSDI payments (U.S. Social Security Disability Insurance via the U.S. Social Security Administration) that place me living under the 100% poverty level for 2020. I will never return to the job market. I am no longer counted by U.S. government statistics as a producer, consumer, or taxpayer in the highly competitive and capitalistic climate of the U.S. so why bother to diagnose and treat someone with ASC who is both physically disabled and who is approaching the age of retirement? When one considers a cost-benefit analysis of providing me with a diagnosis and treatment for autism, it is seen by highly strapped healthcare institutions and their clinicians as an all-costing, little-to-no-benefit conundrum while simultaneously facing the dearth of adults now seeking autism diagnosis and treatment in the U.S., U.K., and elsewhere.
I faced a similar experience during the 1980s when I saw three psychiatrists in succession who were specialists in Gender Identity Disorder (GID) in Long Beach, California. At the time, these specialists were all cisgender providers who acted as very expensive gatekeepers for my transitioning to male. There simply were no other known transsexual men in Southern California at the time so I was left to perform my own research and shoring up my mental health in light of the first two psychiatrists stating flatly that they thought that I was not transsexual despite all the evidence that fit the criteria, and the fact that my mother consumed Diethylstilbestrol (DES) during her pregnancy with me which was known to cause many offspring to identify as the gender opposite that of their natal biology before its use was banned in the U.S. during 1971.
The third psychiatrist found me to be transsexual and I transitioned—32 years ago! I couldn’t be more content and comfortable with being male. Until 2001, guidelines for gender transitioning were set forth by cisgender clinicians under the Harry Benjamin Institute.History of the Harry Benjamin International Gender Dysphoria Association | WPATH
But then a miracle happened; transgender clinicians themselves redesigned the guidelines under a new organization named Transgender Professional Association for Transgender Health (TPATH) (based on WPATH). We, transgender people, took control of our own destinies! And; various research performed over the past two decades—including by none other than Dr. Simon Baron-Cohen himselfAutistic Traits in Treatment-Seeking Transgender Adults (Nobili et al., 2018)The stability of autistic traits in transgender adults following cross-sex hormone treatment (Nobili et al., 2020)Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses and autistic traits in transgender and gender-diverse individuals (Warrier et al., 2020)—demonstrates that up to 26%Prevalence of Autism Spectrum Disorder and Attention-Deficit Hyperactivity Disorder Amongst Individuals with Gender Dysphoria: A Systematic Review (Thrower et al. 2019) or more of transgender people have an Autistic Spectrum Condition,There’s Growing Evidence For A Link Between Gender Dysphoria And Autism Spectrum Disorders | Zhana Vrangalova | Forbes and 4–5.4% of autistic children may potentially be transgender or gender-diverse, compared to 0.7% of non-autistic children.Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder (Strang et al., 2014)Gender Variance Among Youth with Autism Spectrum Disorders: A Retrospective Chart Review (Janssen, Huang & Duncan, 2016)Gender variance in children and adolescents with autism spectrum disorder from the National Database for Autism Research (May, Pang, Williams, 2017)
Taking back power
We, autistic individuals, need to form our own research-based and clinical consortiums to address the underdiagnoses of natal females, transgender men, and people of color. Autistic clinicians should play a larger role in defining diagnostic criteria and addressing the treatment of autistic people. The narrow focus of using male-identified criteria for determining autism is outmoded and unethical to use as a blanket approach, as is citing constrained budgets that limit care to children only.
We are already making progress in this area, speaking out, and daring to disagree with neurotypical experts. We will succeed for ourselves and subsequent generations of autistics…just as we did so many years ago as transgender individuals taking back our power and identifying and defining our individual lives and the larger community.
Don’t get discouraged
I ask that you not be discouraged if you have failed to receive an autism diagnosis as an adult. I ask instead that you seek out other autistic individuals, our online communities, in-person autism groups, and allies; for support, further information, and perhaps a referral to an autistic psychologist or psychiatrist for your ensuing ASC diagnosis.
Let us know what you think!