Autistic Self-Diagnosis Is Valid

Because the diagnostic process is highly flawed

Dear fellow self-diagnosed adult autistics who are struggling with imposter syndrome, gate-seeking, and other barriers to formal diagnosis:

You are not alone.

I still struggle with imposter syndrome and self-doubt on a regular basis.

The formal diagnostic process is highly flawed and biased, and access is neither equitable nor equal.

The DSM-V criteria for autism was written with little white boys in mind, and nearly all autism-related research is still being done by neurotypical researchers, and is still focused on little white boys.

Researchers seem to forget that autistic children grow into adults, there are autistic people who happen to not be male, and there exist autistic people who happen to not be white.

There is some fantastic research being done by Actually Autistic researchers, women, non-binary people, trans people, and people of colour, but it’s only a drop in the bucket right now.

Camouflaging and masking

Some clinicians still have an outdated, stereotypical view of what autism really is and how it presents in different people.

Some incorrect statements people hear from clinicians when seeking an assessment:

• “You can’t be autistic, you make eye contact.”
• “You can’t be autistic, you have good social and communication skills.”
• “You can’t be autistic, you are successful/smart.”
• “You don’t look/act autistic.”

FFS. What does autistic even look like? Are they talking about overt behaviours common in autistic people, like stimming? Guess what? Thanks to social pressures, stigma, and repeated criticisms, many autistics have had to learn how to hide our stims as an act of self-preservation.

If we “pass” for neurotypical really well, that’s not a good thing, it’s the result of years of masking, camouflaging, and suppressing our authentic selves in order to avoid negative repercussions in our lives.

Masking is emotionally, psychologically, and physically exhausting and harmful to autistics, and can lead to increased rates of anxiety, depression, poor self-concept, self-harm, and suicidality.

Barriers to diagnosis

People wishing to access a formal autism assessment encounter a number of potential barriers, including racism, gender bias, disparities in accessing quality healthcare, and poorly informed clinicians.

People of colour and people with low income have barriers to accessing adequate healthcare, especially in places where there is a paucity of available resources, and areas where there is little to no financial assistance for psychological and mental health supports.

Gender norms and gender bias play a significant role in misdiagnosis and delayed diagnosis. Research has identified clinician ‘interpreting bias’, where their analysis of people’s behaviours and experiences differ based on their gender presentation.

The DSM-V criteria and assessment process were created by non-autistic people without consultation with Actually Autistic people. Autistics know autism better than anybody else.

The “symptoms”, characteristics, and traits are described from a neurotypical-centric (neuronormative) point of view and from a medicalized perspective, in which autism is pathologized. Autistics are seen and treated as “disordered”, and autism is considered undesirable, something to be “fixed”.

The entire premise of a formal autism diagnosis is that a neurotypical brain is ideal and preferred, and divergent brains are diseased.

“Neurotypicals are not healthier or more “right” than the rest of us, just more common… ‘Normal’ is just something a bunch of people made up.” — Dr. Nick Walker

Self-identified autistics

Self-identified autistics are usually (of course, not always) very well informed about what autism is really like, from an autistic perspective. Often we began with trying to figure ourselves out, trying to understand why we feel like aliens in our own world.

For me, it started with my son’s ADHD diagnosis in 2019. His diagnosis led to mine, and I began my life-long journey of self-discovery, which allowed me find an amazing community of fellow Neurodivergents (ND).

The ND community has largely been extremely welcoming and helpful. Many autistics recognize how difficult the diagnosis and self-discovery process is, given all I’ve mentioned above. This is made more difficult by the alarming amount of misinformation that is widely shared, both online and in person.

This is even more harmful when this misinformation is spread by professionals and groups claiming to be advocating for autistics, who then propagate stereotypes, outdated information, treatments, and “cures”.

Most self-identified autistics have done extensive research, have truly dug deep to find out whether this neurotype fits with their experiences — it’s not something people arrive at lightly.

Many of us develop special interests, subjects we become incredibly interested in, and tend to learn about in great depth. (Mine is this, by the way — neurodiversity, mental health, psychology, and advocacy). Many of us also enjoy researching a topic of interest in great depth and in considerable detail.

One (one being me) might say that self-identified autistics who have researched autism right down to the very last book, journal article, or scientific blog they could find, are demonstrating an autistic trait right from the get-go.

© Jillian Enright, Neurodiversity MB

Author’s note:

My choice to use the words valid and diagnosis aren’t intended to pathologize, nor underplay the importance of self-discovery and self-knowledge.

The title is a clap back at gate-keepers. I chose to use those particular words with the hopes of validating the experiences of others who — like me — often feel like “imposters” because they don’t have a formal diagnosis.

-Jillian

Related Articles

Autistics know autism better than anybody else

For a fantastic piece about why self-diagnosis is preferred over formal diagnosis, I highly recommend From Self-Diagnosis to Self-Realization, by Devon Price.

Self-identification is not just valid, it’s affirming. Figuring out why we are different can be a huge relief. Finding our community can bring comfort, support, and acceptance.

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