December 15, 2019

Self Diag-KNOW-sis in Autistic Women

Admit it. You have done it. You have googled a medical symptom (“blotchy red thing near my navel”) and panicked slightly as a rare and highly serious condition (“Staphylococcal scalded skin syndrome”) populated in the possible explanations. As you read about treatment options and success rates, you come across the sage recommendation to seek out a medical professional before you perform some ancient home remedy or call your lawyer to review your last will and testament. After all, Google doesn’t know everything, so we do need someone with expertise to diagnose and treat. 

Imagine your personal diagnostic efforts being met with skepticism by your chosen professional helper. “Maybe you just scratched yourself in your sleep. No need for alarm. Here’s some Benadryl. See you in a few weeks if your condition doesn’t improve.” A healthy, respectful dose of skepticism is clarifying, reassuring, and just the reason you opted for an appointment rather than the home brew. 

However, imagine your attempts to solve your own problems being pathologized. In effect, you are sicker because you tried to figure it out. Such is the experience of adult women who believe they have autism. While I could eviscerate professionals who lack the expertise diagnosing and treating autism in anyone other than a seven-year-old boy, that has been done. Instead, let’s consider the resume (read: credibility) of our would-be autistic female. 

It is fairly well documented that autistics aren’t your run-of-the-mill half-assers of that which fascinates, interests, and motivates them. Collections are organized by logic, not aesthetic. Think Dewey decimal, instead of “this shelf has all the pretty paperbacks”. Wardrobes, arts and crafts supplies, and food consumption (M&Ms, Skittles, and Starbursts to name a few) are governed by the laws of science: ROYGBIV. Purchasing a new computer, taking a vacation, reorganizing the pantry, or any other decision is preceded by exhaustive research. If I was a gambler, and I’m not, I’d confidently put my money on the research efforts of any autistic.

We certainly are not talking about a population of people fond of speaking with receptionists to schedule appointments, completing reams of often redundant paperwork, traveling to unknown places to interact with unknown people, enduring unpredictable sensory offenses and answering unpredictable and redundant questions only to be met by skeptical professionals not familiar with real world autism. 

In my experience as a diagnostician, women who wonder if they are autistic have familiarized themselves with the diagnostic criteria (from all editions of the Diagnostic and Statistical Manual of Mental Disorders and the International Classification of Diseases) with ample documentation of how they manifest each diagnostic criteria. They have scoured every applicable research article, forum, and website and taken copious notes. They completed self-assessments from reputable researchers and brought scored copies for the professional. They have read accounts (often horror stories) of other women whose diagnostic experiences have varied from worthless to infuriating to maybe, just maybe, helpful. In preparation for the clinician interview, scripts have been written, rewritten and memorized in preparation for the questions they know will be asked (because they watched a video) to avoid what they know may happen when they sit down on the couch: doubt, misdiagnosis, dismissal, invalidation. And, they know that if they talk about all of this preparation, the red flag of “faking it” starts to appear. 

They have done their homework. Not for days or weeks. But for months and years. Oh, and they have questioned themselves and been questioned by others along the way. Relentlessly. By the time the courage is mustered to make the appointment, they aren’t just prepared or anxious, they are desperate. 

Interpreting this desperation as efforts at manipulation are understandable in the right context. However, in this context, the outcomes are disastrous: Another woman, who does not manifest the typical male phenotype of autism, is dismissed or receives an incorrect diagnosis. This woman may or may not seek out a second opinion. She may or may not medicate the incorrect diagnosis. She will continue to feel like a broken, incomplete neurotypical. 

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