Get a Diagnosis, Not Gaslighted

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Women(I use “women” to refer to women and people with minority gender identities). all over the country are looking to be diagnosed with autism. Undiagnosed women are recognizing themselves as they explore writing about autism. Women are trying to understand themselves and their experiences, navigate daily life, jobs, and relationships, and make self-affirming choices.

Too many women are being laughed out of offices and told “You don’t look like Sheldon.” Many women feel lost finding someone knowledgeable who will listen.

Autism has intersectionalities with race, gender, and ethnicity. Too often, women of color don’t see themselves in what they read or what's posted about autism. There are autistic women of all races, ethnicities, and identities. There is a higher percentage of gender nonconformity, specifically, trans identity, among autistics than in the general population. Having an intersectional identity is challenging because of multiple cultural biases about autism as well as biases about different races and genders.

There’s a huge discrepancy in the charge for an autism evaluation. Some evaluations cost $2,000 and less; others go all the way up to $6,000. The standards are unclear. If the charge is very high, ask about it. Charging for prep time and writing time as well as face-to-face time is reasonable.

People are also recommending neuropsychological testing. If the evaluation is for a school-aged child, get a comprehensive evaluation. Often, children have undiagnosed learning or processing issues that affect learning as well as other important functions.

When it comes to adults, I believe the situation is different. As someone who did neuropsychological testing for over 30 years, I don’t think this kind of expensive evaluation is usually necessary. Domains of intelligence, memory, visual-spatial problem solving, sequencing, etc. aren’t part of an autism diagnosis. The issues relevant to an autism diagnosis are identified based on what happens in real-life social relationships and experiences, not on rating scales or tests.

One can argue that autistics often have ADHD (attention deficit hyperactivity disorder). ADHD is also a clinical diagnosis, not a testing diagnosis. One can use checklists that exist, or one can do this by interview. Similarly, one can use a good checklist or interview to ask about executive functions and alexithymia (the inability to experience, differentiate, or describe emotions, which is distinct from autism but present in about 40 percent of autistics). A good clinician will check out frequent co-existing issues like anxiety, depression, and mood disorders, and ask about eating disorders, Ehlers-Danlos syndrome, and gender nonconformity.

Women looking for a diagnosis should be sure a clinician is neurodiversity-affirming and has relevant professional credentials. They should ask how the evaluator does the evaluation. Research has suggested that tests like the ASQ and RAADS-R (self-testing online) can miss women and are meant for screening purposes. Women have told me that filling out checklists can be confusing and frustrating. The ADOS (administered by a professional) can miss women who mask. There should be an extensive clinical history and interview by a clinician who is experienced in working with autistics. I interview a second person to get an outside perspective.

Another thing to consider is the criteria an evaluator uses in order to determine a diagnosis. I believe that to be “official” one must be able to validate the diagnosis if someone wants ADA accommodations. This means checking off the DSM-V boxes, albeit with the differences of women in mind—their social behavior is different and they don’t always have noticeable repetitive behaviors.

Because of the research-based differences between the way women and men present with autism, DSM-V criteria would need to be rewritten for women.

The social challenges of DSM-V criteria are met with difficulty navigating typical social interactions that can’t be pre-scripted and are not in a “role,” (like a professional role) but rather are spontaneous, have inferred meaning, and unclear expectations. Women usually have difficulty reading inferences from nonverbal cues and most have difficulty using nonverbal cues themselves. Autistic women have issues with initiating and/or following through social interactions and with small talk. Women mask, but constantly trying to read what’s appropriate and expected is effortful and stressful. How other women seem to bond naturally is a mystery; most feel they never “fit in.” Many feel isolated and exhausted by social interactions. A neurodiversity-affirming clinician would recognize these differences from the standard medical model of autism.

The DSM-V is by no means comprehensive. It’s very limited and pathologizes autism, not taking into account an autistic perspective on autistic identity or the environmental and social components involved. In making a diagnosis, I use a list of autistic traits from research and corresponding with and reading autistic writers.

If a diagnostician is neurodiversity-affirming, has worked with autistics, uses clinical interviewing to get a nuanced picture, explains diagnostic criteria, with or without screening tests and checklists, that sounds solid.

Women(I use “women” to refer to women and people with minority gender identities)