Racism In Autism

I had originally scheduled a post on insomnia for this week, but with everything going on with Black Lives Matter and all the protests I thought it was important to address it now, as well as how racism had manifested in autism.

Obviously there are individual autistics who are racist just like there are individuals of every kind who are racist, and just like there are good and bad people in a more general sense, but what I'll be discussing here is the racism (whether intended or not) within the autism diagnostic process.

The diagnosis of people with autism has always been heavily biased in favour of white boys and men. I think the earliest we can look back to find the root of this is to the 1930's and 40's with Leo Kanner and Hans Asperger. I explained in a previous posts about how Hans Asperger worked closely with the Nazis who were a heavily racist German political party aiming to establish the German population as a superior race by eradicating others, famously including Jews. I remember someone saying to me years ago that their aim was to create a race of purely white skinned, blonde haired, blue eyed humans but now true that is I'm not sure.

With Asperger's heavy influence at the beginning of our understanding of autism, and the much more racially biased nature of the mid 20th century in general, it's little wonder that racism stuck around in the diagnostic system for such a long time. If I'm honest I do sometimes wonder how nowadays we're only just starting to properly understand autism, but I guess any progress is good progress, even if it's slow.

So how are people of colour affected in the modern day in terms of getting an autism diagnosis? First of all there's medical bias that could stop them from getting a diagnosis. This could mean for example that a doctor (especially an older one whose knowledge might be more outdated) may be may not refer a black person to an assessment service because they don't believe that they are - or even can be - autistic. Just to give an insight into how real medical bias is, my wife is a student midwife and highlighted this article to me which explains that women of colour are 5 times more likely to die in childbirth than white women. Obviously this is a huge difference and is clearly unacceptable.

Another factor that affects the diagnosis of people of colour is their location. One of the many things I learned from watching Netflix documentary 13th is that the "war on drugs" in the US was designed to target black people who were predominantly poor. So in relation to autism, especially in countries like the US where medical and health services are expensive, the autistic person is less likely to be able to afford assessment for a diagnosis.

The final point I want to make (although the points I'm making here are by no means exhaustive) is that other people's reactions and attitudes might be more likely to put them off seeking diagnosis. This ties in a bit with what I mentioned earlier about the attitudes from the 30's and 40's lingering for a long time. Their peers, family, colleagues and so on might have outdated views which can cause disheartening, or even worse it can cause argument and fall outs with the people they confide in.

All of these issues that I've discussed are reasons that we need to educate and inform the whole of society, which is absolutely what I aim to do with this blog, as do lots and lots of other autistic advocates through their blogs, YouTube videos, social media accounts, books etc. I feel like now more than ever education is needed around how autism presents and affects all races, genders, ages... everyone! As a final note I think it's important to share some links to black autistic advocates' pages. The best ones I can think of are AutisticTyla and Aspienelle. These links are to their Instagram accounts. Let me know about any more black autism advocates in the comments or on social media!

I really, really hope I've helped with this post. I know I say that about every post, but this one in particular is such an important topic as we're essentially missing out on a whole section of the autistic populaton. Please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: The Black Lives Matter logo (a black fist raised upward) with the infinity loop in white on the wrist to symbolise that black lives really do matter whether disabled, autistic, otherwise neurodiverse, or anything. This is on a white background and underneath it is the post's title with "Racism In" in black, and "Autism" in rainbow colours.]

The Term "Asperger's"

Asperger's Syndrome has been a controversial term in the autism world for a while now. Because of this controversy it's being phased out slowly from the medical diagnosis model of autism, and therefore eventually from the autistic community as a whole. Before I was diagnosed just 10 months ago (exactly 10 months today, in fact) I identified and self-diagnosed as an aspie. The reason for this is because I was still quite early into my journey of learning about the world of autism that I'd unknowingly been a part of for over 31 years prior to diagnosis. And it was also because although I'd heard of the disturbing truth about Hans Asperger which I'll get onto shortly, I tend to avoid big and heavy topics like that so I didn't look into it much until recently.

I considered myself to be a person with Asperger's Syndrome due to the misconception that Asperger's is essentially "high-functioning autism" and as far as I could tell I didn't have any particular sensory needs or atypical thought processes, and in social terms I must have been able to pass for neurotypical otherwise surely I'd have been been diagnosed a lot younger than 31, right? I always struggled with my social skills (or lack thereof) and found it hard to make friends and build relationships when my peers always seemed to do it naturally and effortlessly. I always felt different because of that but I always just put it down to being shy. In reality, functioning and grading labels such as "high/low functioning" or "severe/mild" autism are inaccurate. The bottom line is that if you're autistic you're autistic. Functioning labels only serve to express how other people experience your autism. So if you're like me and slipped under the radar until well into adulthood you'd be classed by most of society as high functioning when in fact you're no more or less autistic than somebody who might have severe (read: noticeable) sensory difficulties or someone who is unable to live independently. There are no different levels of autism, it's just that everybody is different so their autism will manifest in different ways - some more externally obvious than others. It's this increase in understanding of how functioning labels are irrelevant that initially lead to Asperger's being phased out. When I was finally diagnosed in December the diagnosis given to me was the umbrella term of autism spectrum disorder (ASD) and it was briefly explained to me about Asperger's and functioning labels being no longer used.

Now this is where it gets a bit heavy as we start to look at the other - possibly more urgent - reason for Asperger's being faded out. Asperger's Syndrome was named after the Austrian doctor Hans Asperger who was closely involved with autism in children during the 1930's and 40's. I want to first state that it's undeniable that without some of the work that Asperger did we wouldn't have the diagnostic criteria that we have today, and as a knock-on effect we most likely wouldn't have the understanding and acceptance of autism that we have today. That's not to say that society's understanding and acceptance of autism is anywhere near where it needs to be, but it certainly would be a lot worse without Asperger's work. With that said, there is a very, very dark side to the work he did. It was brought to light in a report early last year by Herwig Czech of Vienna's Medical University that Hans Asperger was heavily involved in the Nazi regime. While on the surface he maintained an image of a hero and saviour to many autistic and disabled children, it turned out that underneath this image was a horrible and vile supporter of the Nazi's eugenics program meaning that he strove to create a genetically uniform society eliminating perceived weakness and disability. Asperger was responsible for sending children into a euthanasia program who were deemed unfit to live or who were considered a burden. These children were the ones who weren't seen as valuable enough to train and recruit as soldiers into the Nazi regime.

Presumably, his public image of being a saviour to autistic kids comes partly from him working closely with the ones he kept alive. Their recruitment must have been presented in a way that made it look like he was giving them purpose and a place in life, when in fact it was those individuals who appeared to be lacking in things like empathy or emotion, and those who were easily controlled who were the ones recruited - their qualities theoretically making them perfect soldiers. They were obviously used by the Nazis for their own gains and with no concern over whether these autistics were killed during the war effort.

So that's briefly the dark history of Hans Asperger and the origin of his Syndrome. This post is not to say that identifying as an aspie is wrong in any way. In fact far from it. Although Asperger's Syndrome is a phrase that's considered to be tainted by many people, at the end of the day it's down to each individual as to whether they identify as Aspergic (if that's even a word?) or not. There is no right or wrong answer and a lot of people who were diagnosed with Asperger's would prefer to stick by the diagnosis given to them, whereas a lot of others have most likely stopped identifying that way and started identifying as autistc. Realistically there is no difference as I discussed earlier. Some may choose to see the positives in Asperger's work that lead us to where we are today, and others may choose to see the negatives in his Nazi affiliation. I guess it's the dilemma of separating the art from the artist. A bit like after the Michael Jackson documentary Leaving Neverland aired on Channel 4, it left lots of people pondering whether it's still ok to listen to Michael's music because at the end of the day he was a brilliant musician despite the horrible things he did behind closed doors. It's definitely a grey area but it's all down to personal perspective and preference, and the purpose of me writing this is to provide information so that you can all make your own minds up.

I hope this post has been informative and interesting for you. Please make sure to hit the "Subscribe" button at the top of the page to keep up to date with all my posts. Equally, make sure to follow me on Twitter @DepictDave for more content.

[Image description: Black and white photo of Hans Asperger sat at a desk with papers in front of him. He appears to be explaining something, indicated by his hand gesture where they're held out slightly in front of his face.]