Where are the Black Autistics?

This post is inspired by two things: 1. I’m usually the only black person (or only minority in some cases) in autism groups. 2. Mom was the only black person in the parent group. This blog post will mainly focus on black autistic people because I’m a black autistic person, but there may be some similar experiences between all autistic people of color. Please note that all discussions about a lack of a diagnosis will not include a lack of awareness from doctors as this is a problem regardless of race. This post is about barriers to black people getting a diagnosis.

To me, the biggest factor in why black people don’t get diagnosed is because of stigma within black communities. Yes, there is a stigma about autism in all races, but it’s worse in people of color due to not wanting to be seen as even more imperfect in a white-favored world. There’s also the religious belief of “claiming something” means it’s true. If someone says your child is autistic, then they are “doomed” to struggle or other religious brainwashing. It doesn’t help that many autism resources (including blogs on WordPress) only focus on the challenges of autism without discussing the strengths. A friend from college experienced OCD traits and when she told her mom about them, her mom said “Don’t say that. There’s nothing wrong with you.” She comes from a very religious family. If the child gets diagnosed with autism, how would family and other people react? Family is VERY important in black culture and there are fears that having an autistic child will make family members push away and thus make families of autistic people feel even more isolated.

Let’s say the stigma of having a disabled child didn’t exist. What other barriers exist?

Cost. It is a privilege to be able to afford an autism evaluation, and people in lower income communities do not have that privilege. It cost me about $2500 to receive my autism evaluation, but the cost may vary depending on the evaluation center. Not every evaluation center will accept insurance and those that accept insurance may make you pay for the evaluation before a superbill can be submitted for reimbursement (my evaluation center did a superbill). Looking back, my autistic traits started becoming obvious in tenth grade and neither of my parents were working at the time. Dad retired after nearly 30 years of being a first responder and mom had been medically retired for years at that point. With only a pension as payment for each of them, could they have even gotten me evaluated? While some people may be self-diagnosed as autistic, you need to have a diagnosis in order to get necessary services.

Access to Resources. This is a combination of living in an area that lacks resources or the lack of knowledge of resources. At risk of sounding like a social justice warrior (hate that term), it feels like knowledge of resources especially decades ago is a form of white privilege. Why do I think that? Let’s compare three autistic people: my uncle, Dr. Temple Grandin, and Joey from It’s Joey’s World.

Dr. Temple Grandin. White. Her mom had gotten books to create therapies for Temple when she recognized autistic traits in her.

Joey. White. His mom also found books to create therapies when he was diagnosed.

My uncle. Black. Nothing.

If there are resources for autistic people that aren’t online, you have to know where to look. Autism centers or other centers focused on neurodivergent people (mainly children) may only be in big cities by hospitals or any place that is not a majority-black location. There may not be many therapists to help with coping with anxiety (many autistic people have anxiety issues, but it for some reason isn’t a part of the autism diagnostic criteria) in “inner city areas”. We could go back to the cost of therapy and say that resources may not be affordable. You then have to ask if these resources are even good resources. In my state, one major resource in the big city is affiliated with Autism Society and another is the Center for Autism and Related Disorders. Both organizations promote ABA Therapy, which is a “therapy” that is hated by autistic people because it forces autistic children to fit society’s definition of normal.

Oh, you want resources for autistic adults? Well good freaking luck to you!

Going very slightly off-topic, I’m going to mention why I feel like I don’t see black autistic people in autistic spaces: Autistic spaces are mostly white spaces. I have heard stories on a Discord server I participate in where black autistic people go to an autistic space, don’t see any people of color, and feel too uncomfortable to stay. Yes, it seems like younger (as in Gen Z) black people hate white people now, but that’s beside the point. I’m used to being the only (or one of the few) non-white people in a room. Heck, my church is mostly white or white-passing which I wasn’t expecting. However, some people want to be in comfortable spaces to talk about intersectionality. The server owner of the aforementioned Discord server created the server to have a space FOR neurodivergent people of color. While white people are allowed in the server (you must be a person of color, LGBTQ, or neurodivergent to join), the server is majority POC with most of the POC being black.

I might do another post about how I have seen absolutely ZERO representation of successful black autistics (or successful autistic people of color in general), but I probably did more than enough blog posts about representation years ago.