Dear AuDHD Auntie,
Is autism really as common as it seems to be now? Do we believe doctors are better at detecting it, or are diagnosis mills to blame?
-Autism Skeptic
Dear Autism Skeptic,
This is such a good question and one that comes up often in neuroaffirming spaces.
Historically, assessment, symptoms, and diagnostic criteria were all modeled on the observation of cisgender, heterosexual, white autistic men and boys. Unfortunately, due to the racism and white body supremacy of our culture, this is common throughout the medical model regarding both physical and mental health matters. In fact, in the US, it wasn’t until 1986 that the National Institute of Health established a policy that *encouraged* researchers to include women; it was not until 1993 when Congress wrote the NIH inclusion policy into Federal law through a section in the NIH Revitalization Act of 1993 (Public Law 103-43) titled Women and Minorities as Subjects in Clinical Research.
Women and gender-diverse people who are Black, Indigenous, and of the Global Majority have overwhelmingly been neglected in medical research, which has led to millions of people going undiagnosed, unassessed, and just plain ignored by doctors, psychologists, and providers.
What we are witnessing currently is not necessarily a surge of sudden new cases of autism but rather the result of people having access to information, language, and lived-experience narratives of others in a way we never had before social media.
There is hopeful movement of more and more providers adopting the Disability Justice social model of disability, which views neurodivergence among a person’s identity facets rather than a disorder or disease. Collectively, we are a work in progress learning how to expand our definitions and assessments of autism. We are working toward placing greater emphasis on an autistic person’s lived experience as an indicator rather than external observation, assumptions, and biases.
As for the role of “diagnosis mills,” it is wise to hold a healthy skepticism when seeking out a provider for therapy and/or autism assessment. Legitimate assessments are performed by master or doctoral-level licensed clinical providers. There is currently a movement among neuro-affirming providers to make the assessment process more accessible. It is often a lengthy process, with interviews, questionnaires, and clinical assessments requiring hours from the clinician and the client, which is why the cost is generally high. Unfortunately, many insurance carriers do not cover diagnostic assessments for autism and ADHD because they’re not considered medically necessary.
The decision to pursue formal assessment and diagnosis is profoundly personal, and there is no right answer that fits all people and all circumstances. For more information on what to consider when making this decision, check out our Ask AuDHD Auntie letter here.
Many people who self-identify or self-diagnose feel relieved to learn more about how their brain works and to have some answers to questions that have haunted them all their lives.
Ultimately, people need access to the language necessary to describe their experiences. While society often claims that specific identities are just trends started on social media, what is happening is the sharing of language and narratives that help people describe what they have been feeling and know that they are not alone in their experience of that part of their identity.
The field of neuro-affirming care is ever-evolving, as it is rooted in a neuro-inclusive culture that values growth mindset practices. We continue learning about ourselves, our brains, our identities, and our bodies, and so the information we have changes over time as we explore, discover, and ask questions.
Kindly,
AuDHD Auntie
