On the Impossibility of Getting Medical and Mental Health Care as an Autistic, Deaf, Black Woman with Chronic Illness

Hey Lovelies,

Let’s talk about disbelief.

What does that look like?

Well, to be frank, it looks like me. I am a Disabled, Autistic, Deaf, Black Woman, and that alone brings a lot of adversity to my everyday life.

Being Black brings a certain amount of disbelief all on its own that many are blind to. What I mean by this is how society looks at us, people with skin like mine– from the school system to the judicial system, and medical system.

We are never believed when we say something is wrong or that we are in pain, or we are always racially profiled. Our neurodivergence, mental health, or disabilities are never taken into account before we are wrongfully, judged, accused, or apprehended.

I speak from experience on all these fronts. My biggest obstacle right now is my Autism. I was diagnosed as a child right before age 3. I had a very hard life from the beginning and was evaluated at this age and then a few more times growing up, although it wasn’t really brought to my attention until after I was taken away from my family. I got a “serious” diagnosis in 2015.

I grew up knowing I was different but never knowing why or if there was a name for it. My family never treated me like I was autistic, only that I was weird, a cry baby, or too sensitive.

Later, I went to a psychiatrist to help deal with my Bipolar depression and some other stresses and was asked if I was aware that I had ASD? I said “No?” and asked what it was. I was told I had Autism spectrum disorder, more than likely “Asperger’s” because I was articulate at times, so I was considered “high functioning” (This is not a compliment, by the way).

I was diagnosed by a woman doctor and was made aware that girls, women, people assigned female at birth (AFAB), and children of color are more difficult to diagnose and diagnosed later than white males and those with white-presenting skin.

So fast forward to the present day, and me being disabled and needing multiple doctors, it’s really hard because I am constantly being told that what I was previously diagnosed with must be wrong, so I spend a lot of time getting re-tested for things instead of being taken at my word.

With my Autism diagnosis, as an adult in a new state, all of my (male) doctors tell me I am lying, because “I don’t present as Autistic.” Excuse me?!Like what does that actually mean?

I was recently told by my new neurologist that my “claiming” that I am autistic is “dubious in nature” because I don’t have proof and don’t present as neurodivergent.

I didn’t initially catch this because I am hard of hearing and am never presented with an interpreter, but I always read the dr notes in my patient portal. I cried upon seeing this!

(Fuming, I was.)

How dare he, they, all of them! How would I get proof? Why do I need proof?

This happens with each new doctor, and with a lot of my other diagnoses as well. I always have to fight so hard for access, for proper health care, and I am EXHAUSTED!!!

I can’t help that they don’t believe that I am Autistic, sick, or Deaf. I’ve never had services growing up, and trying to figure out what I need or finding therapists or services that work with autistic adults as well as those with hearing difficulties are pretty much zero to none.

Being treated this way by pretty much anyone of authority worsens my depression tremendously.
Being judged for things out of my control, and being told I’m “not autistic enough,” keeps me isolated and alone.

All I can do is keep sharing my experiences, my truth, always speak out, and keep reminding myself I am enough.

Here is to Disability looking like me, not judging what we don’t understand, and keeping on fighting the fight!

Stay lovely.

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5 Responses

  1. True, it is a repetition of the obvious, but man, that ain’t right to be mistreated like that, none of it is. That you keep on keeping on through that mess could, maybe should, have you up for sainthood.

  2. I’m so sorry you’ve gone through this! Although I’m neurotypical, white-presenting, and cis female, I’ve gone through things just like you with health care. For example, once my pain was not believed in an ER, because he saw in my chart that I had had an audiology exam and everything was normal. Except that the audiology exam was for tinnitus. I had never said I had a problem hearing, but he took this “normal” hearing test to mean I was clearly faking pain or it was in my head. Doctors are so good at finding reasons to act incompetently.

    And I’m not even going to get into my MS journey.

    You are not at all alone.

  3. I am so sorry that you’ve had these experiences. Did you ever get anyone to elaborate on what they meant when they said that you don’t present as neurodivergent? Did they say this because you have superior masking skills? I am Asian. No one doubted me when I told them I was autistic. It likely helped that I was clinically diagnosed when I was 55 and have filed a copy of my diagnosis with my employer’s office of accommodations and compliance.

    I can only imagine how hurtful and stressful it must be to not have anyone believe you. While it’s always possible that a colleague or an acquaintance might say this, I would never expect to hear this from someone who is supposed to have a background in psychology. I wonder if these people were relatively young and inexperienced. Surely they realize that one of the challenges with diagnosing autism in adults is that many adults have developed coping mechanisms to offset their shortcomings.

    I would hope that observer racial bias would not be an issue but know from having read some of the current research out there that it is. One study I read concluded that Blacks and Hispanics are less likely to be diagnosed with autism than white people. While I understand that observer bias happens, I’d be curious to know about what they were thinking when they decided that you were not presenting as neurodivergent.

  4. Thank you for sharing this, it is really valuable for me to read. I appreciate it. I am sorry the system is biased and puts obstacles in your way. i hope people start believing you soon.

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