The other day, I was bumbling around on YouTube and found a (then very recent) video from the I’m Autistic, Now What? channel titled “You’re Not Autistic, You’re Just Privileged.” It was, essentially, a response to two TikToks that were critical of self-diagnosing or people using social media to explore the possibility they might be autistic. I won’t rehash Meg’s points, which were well thought out and worth watching anyway, but the whole thing did get me thinking. What is to be done about the question of legitimacy?

As a people-pleasing, rules-following individual, I have often espoused going the “legitimate” route, if only to avoid giving people easy ammunition for casting aspersions. But now that I’m older, grouchier, and aware of pervasive, systemic dismissal, I’m taking a more punk rock approach to my life.

This insistence on people’s lived experiences only being valid if they’re “legitimate” – whatever that means – absolutely rankles. And frankly, I’m convinced it’s pretty damaging.

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Hysteria: A History

To get some background on the problem with demanding legitimacy, let’s consider: hysteria.

We might say that hysteria was the original medical catch-all. Dating back to ancient Greece, the “wandering uterus” diagnosis is now most associated with 18th and 19th century medicine, primitive asylums full of violations against human dignity, and female sequestration in the vein of The Yellow Wallpaper. However, modern psychology took longer to discard the diagnosis than you might think; a corresponding list of symptoms persisted in the Diagnostic and Statistical Manual until its 1980 revision.

In the 19th and 20th centuries, the root of hysteria was decided to be mental, and they believed it could manifest as any number of psychosomatic symptoms. Essentially, “you’re making it up” with extra steps. All this made it so invisible illnesses (or anything for which the cause couldn’t be determined) could be chalked up to hysteria. And this phenomenon is still alive in well in the form of medical gaslighting.

Nowadays, medical gaslighting often takes the form of a blanket anxiety or depression diagnosis or assumptions that symptoms are just transient results of the menstrual cycle. We also see dismissal of women’s pain levels, either in refusal of pain management (such as for IUD insertion) or simply treating women with invisible, chronic illnesses as if they’re just drug seekers. The phenomenon has even affected years of research through a lack of women’s inclusion in medical studies.
At best, being sidelined can result in delayed diagnoses. At worst, women risk death.

Not Just Cis Women

Before I continue, I want to clarify that medical gaslighting is not just a women’s issue. Feminist intersectionality acknowledges that this type of disbelief and dismissal is perpetrated against people across marginalized populations. Black and brown people of all genders, members of the LGBTQIA community, and anyone else who could be considered “different” often face the difficulty of misdiagnosis.

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Me, Myself, the Illegitimate

Gatekeeping care and self-revelation in the name of legitimacy is particularly dangerous because it can wear people down, dissuading them from seeking help. I’ve personally experienced this all my life.

My headaches started in third grade. Before I learned that being sick was unacceptable, I would tell my teacher and be sent to the nurse’s office. They’d give me a painkiller, and I’d lie there on the little bed, my cranium splitting open, my stomach in knots, and I’d wait to stop hurting.

Eventually, adults started getting suspicious about how often this was happening, and despite my status as a general goody-two-shoes, I think they decided I was trying to get out of work. “You’re too young to have headaches,” they told me. By 4th grade, I’d stopped telling anyone about my pain. I carried my own ibuprofen (which was probably not allowed then and would certainly not be allowed now) and covertly self-medicated when necessary.

When – in my late teens – I finally sought help from my primary care doctor, I was told it was either sinus or tension headaches, and nothing could be done. It took another 10 years before I described my symptoms to a new doctor (a woman this time), who immediately said, “Oh honey, you have migraines.”

When my thyroid condition made itself known, I was lucky that both my ER and primary care doctors recognized the atypical presentation of Hashimoto’s. As a result, I received a refreshing amount of validation until a year later when my blood pressure meds seemed to stop working. During a weekend flare-up, I resorted to the urgent care clinic and was told, “I think we need to deal with your anxiety.” Admittedly, the antihistamine the nurse practitioner prescribed (hydroxyzine – often used in psychiatric applications) did put me straight to sleep. But I can’t say I felt taken very seriously.

At what point do I become medically legitimate? At what point does it become acceptable for me to raise my concerns about various symptoms without being brushed off? Was it once I’d been found to have at least two autoimmune conditions? Or later, after my tube removal surgery revealed moderate endometriosis? I think I have hypermobile joints; should I have that investigated? What if they think I’m a medical “pick-me”? Could my joint pain actually be rheumatoid arthritis? I bruise really easily, but no one has ever seemed too curious about why.  Should I bring it up? I’ve had subtle social problems all my life. Could I actually be autistic? Is there even a point to investigating that?

They’ll think I’m a hypochondriac. Maybe I am.

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The Other Side of the Coin

Alright, Devil’s advocate time. What’s the other side in this? Many people argue that the current trend of casual TikTok autism education and self-diagnosis spreads misinformation and has the knock-on effect of de-legitimizing peoples’ real diagnoses. The best example of this is probably the situation with fake service dogs. To some people, it seems like a perfect life hack: just buy a vest and a fake “certification” paper off the internet, and you can take precious Pookie anywhere! It’s ok if he barks. All dogs do that, right?

The real effect of this, though, has been public suspicion.

Fed up with misbehaved “service” animals, some store personnel have started questioning people accompanied by an animal – and their questions are not always strictly legal. This represents a real barrier to accessibility for people whose animals really are trained for specific assistance tasks. Even worse, an out-of-control dog can undo years of expensive training if they attack someone’s service dog.

I’m not trying to sneak a dog into Walmart, though. All I want is permission to stop feeling like a trash human.

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Acceptance: the Balm of the Self

My attempt to get formal ADHD diagnosis was a definite flop – one that I intend to write about in more detail. Even still, since I decided to just proceed on the assumption that I am, in fact, neurodivergent, I’m feeling better than I have in a long time. Understanding why I do the things I do, abandoning unreasonable standards, and rejecting shame has lifted a cloud I’d grown so used to, I didn’t even realize it had been there until it was gone.

It’s kind of like this: all my life, I’ve been surrounded by squirrels. And it was taken for granted that everyone should be fantastic at leaping from branch to branch and – stay with me here – have a lovely, fluffy tail. And here I was, awkward, still getting up trees, but with much more effort. I didn’t understand why it was so hard for me to just be normal.

Until the social media ADHD sphere clued me in, I thought I was a substandard squirrel. Now, well, now I think I might be a perfectly fine possum.