for my benefit???
a question on self-diagnosis
I saw a post recently that was saying something along the lines of, if you discredit autistic self diagnosis (even when you think a lot of white people self diagnose on purpose (like collecting oppressions or the Oppression Olympics), we’ll be harming BIPOC who need this most (with extra emphasis made on Black and Brown people being mentioned throughout the post - not even Indigenous peoples! - which was wild to me, but that’s for another post).
Anyway… that message kinda got to me.
Not only because it was a white person using BIPOC experiences to try to prove their point, but mostly because, Damn! My queer, Black femme, ND advocate self didn’t even know this!
OK, OK. I knew of some BIPOC online who self diagnose because they’re waiting for official assessments (as in, everything is arranged and they’re expecting a call). Or maybe they are in situations where they are safe enough to disclose they’re self diagnosed. Hell, I even self diagnosed from the safety of my platform (not so much in real life though). Either way, I don’t know many. (But I do know we’re not a monolith, so don’t at me with your one self diagnosed Black autistic friend and tell me it must be prevalent because of it.)
What really got to me about this post though was from what I knew and experienced of the Black community, it didn’t seem like it was talking about the Black community I knew. The Black community I know is still coming into the idea of mental health, neurodiversity and going to therapy. But even knowing about being autistic, let alone the ability to self diagnose and then telling people about it???
I wasn’t so sure.
Yes, we might benefit from self diagnosis for our own personal knowledge like everyone else, but I was struggling to see the real benefits. Even disclosing ADHD at a school, hospital or work place as a Black or Indigenous person comes with hella risks. What amount of grace or support do you think we’d be getting for being autistic, just self diagnosed?
Maybe the same amount (or even less perhaps?!) we get when we’re diagnosed???
Now, I’m a huge fan of self diagnosis because I want everyone to get what they need. I know not everyone can access assessment services, wait times suck and yes, medical racism is still very real too (my own recent assessment experience is proof of that). But since getting to know more about my own Blackness and the Black community (I’m a transracial adoptee, so I’m a mess with my racial identity, I can admit that), saying that discrediting self diagnosis would harm Black (& Brown) people most didn’t quite land for me.
Everything harms us (Black people) most anyway.
We’re already (or can be) screwed when it comes to being/getting diagnosed/self diagnosing autistic. Not only from society as a whole, but also within our own communities as well. We self diagnose at our own risk as much as we gotta risk getting a diagnosis within the system. Only diagnosis within the system gives us a better shot at access to recourse and support if we need it (although even then that can be a long shot for us).
Because let’s face it. Our self diagnosis means nothing when we’re still seen as Black first.
We experience our own unique oppression within the autistic community, whether we’re self diagnosed or not too. Whereas white self diagnosed autistics still hold that privilege of being seen as white first. We know being autistic (even self diagnosed) while white hits a lot differently in society than if your Black or Indigenous (and that’s even before adding autistic to our social marker).
So, is self diagnosis really for my benefit and discrediting it being most harmful to me?? I’m not so sure. Because Black (and Indigenous) people know we’ll have to fight to be seen in our humanity within yet another oppressed group, and still struggle to have our unique needs met as one of the most marginalised with it, when we do (cuz whiteness loves to make itself the most in anything it can and that includes oppression).
So, after reading that post and checking in with a few of my Black and Indigenous autistics, I decided I needed to do some research on my own.
Friends, let me tell you, I couldn’t find anything that said we Black and Brown people, (I’d change Brown people for Indigenous peoples though, because those experiences are not the same in the health systems), need to utilise self diagnosis a lot more than white people. Now, I found loads of info on why we would need to do this, but that’s not what I’m asking about - we all know why Black and Indigenous peoples would have to utilise self diagnosis - but are we using it more often and is it here primarily for our benefit? Would we be most harmed if it was discredited??
There’s something off about using BIPOC oppressions to defend a practice that predominantly benefits white people in order to access/utilise more of their privilege. I’m wondering how much of this energy we’re witnessing with the discrediting self-diagnosis will harm BIPOC most argument here too.
What’s your story about self diagnosis Black autistic fam? (Indigenous peoples too! Brown, South/East Asian, AAPI and other visibly darker skinned ppl please feel free to share your thoughts too) Let me know, what self diagnosis means in your communities? What have you noticed about its use online or in real life? When are you self diagnosing and why?
PS. I’m not interested in hearing from white people on this topic at this time, so if you comment, I’ll delete it. Your self diagnosis is valid to me, but that’s not my point this post.