The other day I was upset by a particular thread in a popular private FaceBook group for autistic people and their allies. There was a post about how a woman in a group was selling a personal cosmetic line and one of the eyeshadow palettes she was selling was autism-themed. It was a great selection of colors, but the cover art featured the dreaded puzzle piece and was predominately blue, which most in the autistic community now see as offensive. Immediately there were furious posts that eventually led to several people giving detailed instructions on how to report her until FB took down her account in order to destroy her business.
But little background: Her young child had just been identified as autistic, she was struggling financially to provide for him, and using the profits of the sale of her cosmetics to support them. And she is black.
Luckily, some VERY patient black autistics set the record straight and spoke out to white autistics in a long, beautiful post about why intersections matter, how to critique Black Owned Businesses who are being ableist, and why black autistics have a harder time than white autistics. I would love to link to it in full, but it was a private group. Here are the major points:
- Black families and autistics are not given any decent resources upon diagnosis. While it is difficult for all people to find proper information on autism because of the vast web of profit-driven misinformation surrounding the condition, black people are given even fewer leads to go on and are not offered the same resources or supports. In addition, what supports do exist are largely biased and clinics are run by professional, neurotypical white people who are TERRIBLE about understanding or reaching out to communities of color. (I have seen for myself how bad the racism of clinicians is, especially towards black people.)
- Black families and individuals are far more upset by an autism diagnosis because it’s an added layer of extreme danger when they move about society. Black families trying to accommodate a disability do not have the things they need in their neighborhoods, and black kids are more vulnerable than white kids to violence from the police, care-takers, clinicians (yes, clinicians), and the rest of society. (This in no way suggests that white autistics are not vulnerable to police; they are. This just means the probability of having a bad run-in is higher for black autistics, and the level of violence is more sudden and severe.)
- The way white autistics respond to the ableism of black NTs is far more harsh than the way they respond to white NTs. I don’t know this from personal experience, being white, but I have looked through the comments on the post we are discussing and they are full of over-reactions due to white fragility. While most of the time people try to educate white NTs, the thread went immediately to “burn her business to the ground – here’s how.”
- Money from cottage businesses is often the way black people make up financially for lack of medical insurance, supports, and entitlements when they or a relative is disabled. Yes, white autism moms are annoying and harmful as hell, but being white they usually have more ability to make ends meet and recover their business if some assholes on FaceBook tank it.
It is incredibly hard to be any type of autistic person. We are the most erased minority out there and it gets frustrating seeing the media coverage every other minority has. We are more unemployed than any other group of people, even other types of disabled people. We have a life expectancy decades shorter than that of a black man in America. We have a sexual assault rate that compares with that of Indigenous women. We have a youth suicide rate similar to that of trans youth (being aware that many trans youth who take their lives are also neurodiverse.) We get tired of seeing the murders of autistic people not reported by the media or excused when they are covered. We get weary of open ableism in every area of life and how it is not considered serious even by “progressive” people.
But every frustration I have as genderqueer, AFAB, chronically ill autistic person with a criminal record is nothing compared to the bullshit a black autistic person faces. The sole reason I still have my life is because I have white privilege. I was given shorter sentences in jail because my parents could afford a lawyer and the judge was less harsh on me. I had the privilege of getting an official diagnosis. I have educational privilege which made it easier to look for and find the information and support I needed. I have medical privilege in that even though I still have difficulty getting a doctor to believe and treat me, I am not totally disregarded like a black patient would be. I have privilege in the autistic community because I am able to physically move and speak the way I want. I have class privilege which makes my situation easier than generationally poor autistic people of all races. I have some NT passing privilege. And I have intellectual privilege because my mind is sharp in certain ways and I can understand things with less effort.
My intersections are many and very difficult, but my life is immeasurably less challenging by not being black. Period.
I am seeing a disturbing trend in many autism groups on FaceBook and elsewhere. A person new to the subject and world of neurodiversity comes in with a question and in that legit question a “forbidden” word is used or they talk about puzzle pieces or they mention ABA (“conversion therapy” for autistic people.) In the comments, autistic people will harshly reprimand the person who is confused about why everyone is reacting so strongly. They feel attacked and leave the group with a newfound distaste for autistic adults.
There’s a few reasons this happens over and over:
- No one considers that there is a learning curve on this particular subject. We have noted that the media does not cover issues in the disability community and even less so from the perspective of autistic people. The information out there that comes up when you search about autism is heavily skewed towards the pathology paradigm and controlled by the companies, institutions, and charities who profit from people thinking we are diseased, disordered, and in need of invasive treatment. It’s no wonder people are ill-informed and need GENTLE education, preferably in the form of an educational article by an autistic person informed on neurodiversity theory, rather than personal attacks or interpretations.
- Most of us have rejection sensitive dysphoria. While this is not an “officially” described condition in the DSM yet, it needs to be addressed in our community. RSD is a trauma response common to neurodiverse people which makes it difficult to not take things very personally. It leads to reactivity that is out of proportion to the offense. In other words, we truly feel like the use of an outdated term or idea is a personal attack. There’s no ability to put it into context. I struggle with it myself and have a hard time calming down and measuring my response to certain social media threads. Or not responding at all.
- Autistic people, even the mods and admins, get carried away with the power and become extremely pedantic to the point of silencing people and squandering teachable moments. They often focus on the error and not the content of what is being said. We have the same dark tendencies of any person who has been bullied, erased, and dehumanized and that comes out sometimes through being unfair gatekeepers. This is wrong and all mods and admins need to give other disabled people who haven’t been exposed to the same information more latitude and less attitude. Remember that we all struggle with being appropriate.
- White autistics who are late-diagnosed are often carried away with finally having an ax to grind because they are suddenly thrust into a minority group when they previously thought they had more privilege than they actually do. One problem with this is that they don’t acknowledge the intersections of non-white and poor autistic people and their families when responding to posts.
If you are a white autistic person who is getting offended in discussions and firing off at people, please take a moment to list the ways you do have privilege in America. No matter how bad you have had it as an autistic person, and we have certainly had it worse than anyone but us can know, it is still not the level of erasure and danger a black or non-white autistic person has experienced. It is horrible for black autistics in these white-dominated groups to experience our level of fragility and defensiveness. We all have racist thoughts, words, and attitudes because we were all raised in a culture of white dominance. Being autistic does not make us immune from the flaws of regular people. We have much to unlearn and it is a life-long never-finished process.
A few other things that came up in the thread about this woman’s cosmetic business deserve comment:
- Do not EVER compare puzzle pieces to the Star of David in WWII Europe or compare the slurs we hear to the N-word. It’s not the same thing and not as harmful (although it is harmful.)
- Many parents are not only getting horrible information from everywhere, but they are also statistically more likely to be developmentally disabled themselves as autism is often an inherited condition. Older people are less likely to have ever gotten a proper diagnosis and having a child diagnosed is often just the beginning of self-discovery, so be extra patient.
- If you are a mod or admin, before you reprimand someone, make sure you are not being reactive or having a rough day – get someone else to handle the comment or post if you are feeling sensitive or angry. Ask yourself if the error is worth alienating someone who deals with alienation all the time. If a post is mildly offensive or wrongheaded, please give the person the benefit of the doubt and do not humiliate them by correcting them in the thread – send the person a direct message and don’t be a blunt dick about it. We are dealing with rejection dysphoria. This will cut down on push-back as most people are willing to correct a mistake as long as their honor is not besmirched.
- And always consider the person’s other likely intersections and listen to intersectionally marginalized autistics with respect and validation, not defensiveness.