For Neurodivergent Black Adults, What’s in a Diagnosis? Nia’s Story

During peak pandemic time, I was spending hours of my day engrossed in a TikTok spiral. I learned how to cook various dishes, watched people discover their sexuality in what felt like real time, and danced to too many culturally-relevant songs — I was TikTok’s ideal customer.

So, it didn’t surprise me at all when I happened across the ADHD side of TikTok. After all, I had been diagnosed with ADHD in 2016. Although I took ADHD medication that worked well for me, my late diagnosis had always felt frustrating. Would knowing I had ADHD as a kid have helped me focus better in school or helped me contribute to my friendships better?

One day, during a TikTok spiral, I saw a video where someone was explaining how they never managed to change the lightbulb in their shower and, as a result, had been showering in the dark for months. This seemingly innocuous video caught my attention — I did that too!

Not with lightbulbs, necessarily, but that same thing where I noticed something amiss, forgot about it immediately, and then proceeded to be inconvenienced by it until I had a burst of energy big enough to overcome the barrier of my executive functioning.

That was the moment that I realized how little I actually knew about my ADHD diagnosis. Were there other things I did, inconveniences or peculiarities, that were a result of my ADHD?

Well, being the type-A Virgo that I am, I set out to find out.

I was a dog with a bone. I wouldn’t settle down until I knew whatI “had” or what was going on in my brain.

One diagnosis to rule them all?

Fast forward to the summer of 2022, when I sat on a couch sorting cardboard shapes into matching groups.

“This feels like consensual torture,” I told the person assigned to walk me through the diagnostic testing procedure.

They chuckled, and I marked a win in my mental column that included the number of times I could put someone at ease or win a point for making a mental health professional laugh.

The process had been a long one. Earlier that summer, I’d gone to my usual psych provider and asked her if it was possible that I had autism in addition to the other diagnoses I already had — ADHD, bipolar disorder, eating disorder, dysthymia, generalized anxiety disorder, PTSD, cPTSD, OCD, and a scattering of a few more.

To me, it seemed nearly impossible for someone to have so many diagnoses.

Was it more likely that there was just one diagnosis at the root of it all? That the rest came as a result of something akin to autism?

Self-evaluation

When I stepped into my psych provider’s office that summer, I was armed with printouts and questions.

I had taken a deep dive into autism-related Tiktok, talked with friends, and had a couple of conversations with an autism and ADHD coach. I went from relating slightly to autistic people online to sitting down and taking the RAADS-R self-report test for autism.

Semi-surprisingly to me, the results showed that I was on the spectrum for autism. I sat with it a while and then dove headfirst into the other suggested tests on the website. I took the Aspie Quiz and the CAT-Q test. I took every test on the website I could. Each of them spitting out the same result: on the autism spectrum.

My psych provider sent me home that day with more self-rating questionnaires that spanned a swath of various mental health disorders.

At our next appointment, she reviewed my answers and told me that while it looked like I did qualify as having most of these disorders, she couldn’t say definitively whether or not I had autism. The questionnaire itself showed that I had several autistic traits, but it wasn’t a loud confirmation.

I left that appointment with the phone numbers for a couple of testing centers and a sense of disbelief. I wasn’t even sure if I wanted to have autism. But I sure knew that I wanted answers.

I made the calls, set up the appointments, and hours of testing later, I sat on that couch with those cardboard cards, feeling closer to an answer but also just as far away.

The results are in

Jump forward to the fall of 2022, when I finally got the results of the formal testing I’d done. I sat in my living room on Zoom as the person who had walked me through the testing informed me of things I already knew, like the fact that my OCD was milder than it had once been and that I was affected by anxiety.

The first blow came when I was informed I had bipolar disorder I. I wasn’t surprised. I’d been diagnosed with bipolar disorder II in 2016 after an extended hypomanic period during which I had managed to start an entire business. But the change in diagnosis from II to I did unsettle me ever so slightly. I kept listening.

They then told me that according to their level of testing, I did not meet the diagnostic criteria for PTSD, generalized anxiety disorder, or ADHD.

My stomach twisted roughly as I shifted in my seat. “You’re telling me I don’t have ADHD?” I asked, confused.

They explained that I very well may have ADHD symptoms, but according to them, I didn’t meet the requirements outlined in the DSM, the handbook clinicians use to help them diagnose mental disorders.

I wanted to close the computer at that moment.

For nearly 10 years, every therapist, psychiatrist, and mental health provider I had encountered identified me as having ADHD, PTSD, OCD, and anxiety within about one session of speaking with me and hearing about how my brain worked.

So, now, as I sat across from a person telling me that I had none of these diagnoses, especially ADHD — a key part of my identity and a part of my brain I deeply identify with — I was at best dismayed and at worst, well, angry didn’t cut it.

By that point in the call, I had slipped into a submit-and-freeze response, so I didn’t bother to bring up the fact that I had started this testing quest to see if I had autism. I just wanted out of the Zoom room.

After wishing them a good day, I exited Zoom. I then proceeded to curl up in a ball on the couch, cover myself with a blanket, and try to process what I had just experienced.

Bias in testing

I knew going into the testing that it would be difficult to get a fair or even accurate diagnosis. I knew that, especially as a Black person, assigned female at birth, it would be an even harder battle in a system made for young, white boys.

After all, that is who autism testing was created for. And as a trans, Black, Queer, adult human, I was about as far away from that as could be.

When I made it to therapy the next Tuesday and debriefed my therapist on the results, she looked a bit in shock. She pointed out that in her differing opinion, I most certainly did have PTSD (one of her specialties) and ADHD (she too has ADHD and treats several clients diagnosed with it).

She was the first person to point out something I had already turned over in my head.

“I struggle to validate a test that was made by white people, for white people, and tested over time on white people,” she said. I nodded in agreement.

She pointed out that even more so, autistic people may not have been included in the creation of these tests — and that this was a fault in and of itself.

This, as well as similar stories I have heard from fellow BIPOC peers attempting to get diagnoses, speaks to the direct importance of working with culturally sound and informed Practitioners of Color who can work through these biases when it comes to properly diagnosing folx from groups like mine.

We spent the session helping me bounce back from feeling whiplash in potential diagnoses.

In the end, we both decided that it made sense to write the testing off as — not necessarily unimportant — but unhelpful.

Doctor TikTok?

I think back to that original TikTok that pointed out the realities of ADHD to me. And then reflect on the number one concern I hear from people in relation to TikTok and mental health.

“Isn’t it problematic that people are trying to diagnose themselves from TikToks?”

In a talk I gave in September, an attendee asked this very question. I told them then — and remind myself now — that there’s no harm in people feeling more seen, validated, and understood.

I asked the attendee, “In what ways does a person advocating for themselves affect anyone negatively? In fact, it gives them, and as a result, others, the ability to see themselves in that condition. And it allows them to seek appropriate care.”

If people like me — Black, trans, Queer — saw more examples of neurodivergence in other Black, trans, Queer people, maybe we wouldn’t have to fight so hard for an accurate diagnosis.

What can I leave you with?

I will leave you with this: You have only one brain to live with for your whole life. It makes sense to get to know it, learn about it, and find out what it needs to survive and thrive.

An official diagnosis is just one piece of that. Advocating for yourself is just as important, if not more so.

An even bigger piece is learning how to care for yourself. Learning coping skills. Figuring out the best way to succeed in neurotypical spaces, like corporate work environments. Determining what accommodations from others will help you to be successful and do your best work. And trying out various home life situations that make you feel safe, calm, and cared for.

You are deserving of all of those things, regardless of what is written in your psychiatric chart.

You may have 20, 30, 40, 50, or more years ahead of you on this tiny, spinning globe. It’s my advice that you don’t spend it at odds with your brain, but instead show up for yourself and your needs.

Nia Patterson (They/Them) is a well-respected Black and Queer mental health advocate, writer, artist, and coach. They are the creator behind @TheFriendINeverWanted, the artist behind @SelfLoveToolChest, and also the host of @bodytraumapod. Their work centers on Social Justice, Eating Disorder Recovery, Queer Politics, and Body Liberation. Nia seeks to advocate for more resources and representation for people in marginalized bodies. They coach neurodivergent entrepreneurs to grow their businesses and you can find them at niapatterson.com.

Posted : 2023-12-14 08:56

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