This nifty graphic from NIMH shows some of the differences in rates of autism across a few different races.
I have been wanting to start talking about intersectionality for a while now. From the geekfeminism wiki: “Intersectionality is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another.”
Personally, I find this to be a worthwhile thing to think about. An intersection that I am seeing gain increasing attention in the autism community is the intersection of autism and gender. It’s widely known that there is a significant disparity between the rates of autism in males and females, and people are wondering why. Is there something different about the genders that makes autism more common in males? Is autism harder to see in females? Are we just not good at knowing what female autism looks like? Is there bias among clinicians who do the diagnosing? It is a topic that people are talking about, pushing for, and is gaining attention with various articles and books being written on the topic. Being more or less female, I rather assumed that when I talked about intersections, this would be the first thing I talked about.
But instead, I want to talk about autism and race. Or rather, I want to talk about how it’s not getting talked about, and that’s weird. Along with being overwhelmingly male, the autism community appears to be overwhelmingly white. While people are talking about the gender thing, I see very little about the race thing.
I often do homework as a part of putting together blog posts. I look for articles and books and statistics and other resources to help me better understand what I’m writing about, as well as provide support for what I’m saying. I have never before experienced the utter dearth of resources as I did for this post. There is very, very little out there talking about this.
There are all sorts of books on amazon – many of them scholarly, or at least non-fiction – about autism and girls. I found NOTHING on autism and race. Eventually I managed to track down a few books of fiction that deal with both autism and racism, but by and large they are about white male autistic people, who learn about racism by seeing it happen to someone else. There was one book with an autistic character which also dealt with racism and I was just not able to tell via the description or reviews if said character was white or a person of color.
So, for some reason, this is not getting much attention. Not enough to warrant even a single book. I also tracked down a few statistics. Even that was a bit tricky, with surprisingly few resources out there. However, the CDC, when doing their research, also did some looking into autism rates across races. The famed “1 in 88” study also found “When data from all sites were combined, the estimated prevalence among non-Hispanic white children (12.0 per 1,000) was significantly greater than that among non-Hispanic black children (10.2 per 1,000) and Hispanic children (7.9 per 1,000).” Yet while people talk about the 1 in 88 statistic, and the differences in statistics between genders, I found extremely little talking about the difference in race. All the questions that people are asking about autism and gender seem that they would apply to autism and race (and probably quite a few more besides), but people don’t seem to be asking those questions.
Well, one of the catalysts for writing this post was learning that not only is there an absence of discussion, there is active resistance to said discussion. People, apparently, just don’t want to talk about it. ThAutcast posted a video talking about white privilege as a way to introduce both the topic of privilege in general, and the topic of racial privilege and how it relates to autism, given how overwhelmingly white the communities seem to be. There were some interesting responses to the facebook post.
I don’t understand this post. We are a community of people who our strongest message is that everyone is different and unique in their own way and not to judge one from another. How in the world would someone in said community even think about color? I just don’t get that??
Well that’s interesting. It’s true that diversity and the strength of diversity is an increasing theme in autism discussions. However, this person’s logic seems flawed to me. We don’t make a community diverse by simply saying that it is. We make it diverse by taking a good, hard look at it, seeing if we are succeeding, recognizing when we aren’t, and figuring out how to fix this. Ignoring privilege just makes it stronger.
Another person said, “race should not be a factor in anyones lives….autism sees no color…” Well… maybe it should and maybe it shouldn’t. Race should not be a problematic factor, anyway. Nonetheless, it is a factor. It does have an impact, and it does cause problems. Ignoring that impact does not make it go away.
So why are people resisting talking about this? Well, I don’t know, but I have a guess. I need to confess something. Until that post by TheAutcast, it had never occurred to me to think much about autism and race. I am white and I sat comfortably in my white privilege, seeing white faces reflected back at me, and it did not occur to me to question this. I think about gender because I need to – I do not have the privilege of ignoring it. But race privilege? I have that. It’s really uncomfortable to admit this. It is not fun to sit with that discomfort, to see where I’ve failed, to notice that I totally failed to connect my awareness of feminism and race to autism and race. It’s embarrassing. So I can sort of see how a person might prefer to declare that there simply is not a problem worth thinking about rather than sit with and accept that discomfort.
Nonetheless, I think we should. I think we need to. I have no idea how one’s race affects autism, but I should not go assuming that it does not, or that it is not worth talking about.
Now, there definitely are people of color on the autism spectrum. A particularly famous example is Stephen Wiltshire, the artist. So why is there a discrepancy? Well, one possible reason is bias on the part of those giving the diagnoses. One article I managed to find on the subject talked about an African American family trying to get their son diagnosed. He showed all the classic signs of autism, yet “doctors and other professionals would pin a wide array of labels on Ronnie – including developmental delay, attention deficit disorder, hyperactivity and a social and emotional disorder. Even obsessive-compulsive disorder and oppositional defiant disorder were mentioned.” It took years for him to get the correct diagnosis and the help he needed. On top of that, it looks like there is a distinct difference in the ages of white children and african american children in getting diagnosed (“white kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids”). Why does this happen? How can we fix it? I don’t know, but we are never going to find out until we start to talk about it and make room for that conversation to happen.
Unfortunately, there does not appear to be a whole lot of room for that conversation to happen. As I mentioned, there are people who are pushing back on the idea of talking about this at all. I also took a look at a couple of autism forums and found some additional problems. The Autism Women’s Network (AWN) appears to be trying very hard to be inclusive. They have an absolutely lovely Statement on Gender on their About Us page, and their forums include sections dedicated to talking about gender, sexuality, and orientation as well as sections for parents, for school-related talk, for NT’s to talk to each other, for autistics and NT’s to talk to each other and more. Yet there was not a single forum for talking about autism and race. Nothing.
I found something similar on the wrongplanet forums. There is a section for adults, a section for teens, a section for LGBT, and more, but not a single section for talking about race or for people of color.
I do not believe that either of these two groups are trying to be discriminatory. In fact, given all their other sections, I would say that they are trying to be inclusive, but for some reason explicitly including race just did not occur to them. (I really hope it is not that it did occur to them, and they chose to not include that. For now, I am going to assume that they are not trying to exclude anyone) So I think that one thing I, at least, can do to try to change the landscape is write to both the AWN and wrongplanet, and ask/suggest they include a forum specifically for race/people of color. I have no idea if they will listen, but it seems like a good idea to try. I think I’m going to send something like the following:
To the creators of the AWN/wrongplanet forums;
I really appreciate that you have created forums and space for autism community. It’s nice to know that there is somewhere I can go to talk about various specific issues. I believe that you are interested in being inclusive and welcoming to diversity, which is demonstrated by the existence of forums specific to the needs of LGBT, adults, relationships, women, etc. By doing so you demonstrate that you are interested in what various minority groups have to say, and create an environment in which various people feel invited to participate and talk about issues that may be specific to one group or another.
However, I have noticed that no forum exists for people of color, or to explicitly talk about issues that have to do with autism and race. I am confident that this is not because you do not wish to welcome people of various races, but because it perhaps had simply not occurred to you yet to create a place to invite and welcome that kind of conversation. As such, I wish to suggest that you create such a place. We know that things like gender, age, and sexuality can all impact autism, and autism can impact our experience of those things. We cannot pretend that race is somehow exempt from that.
If you want to email either or both of them as well, you are welcome to use my email as a template.
Now I want to end with a positive example of change. This is about a completely different context – academic conferences. Presenters at academic conferences also happen to almost always be white males. “Conference hosts, VC’s, and others often attribute this to a “pipeline problem,” the idea that there simply aren’t enough qualified white women or people of color who wanted to or were qualified to participate.” Eventually the creators of a conference decided that they did not believe this, and wanted to find a way to change it. So they took a good, hard look at what was going on, and came up with a strategy to change it.
Their solution was to eliminate networking as a way to get presenters, and go exclusively by meritocracy, using a combination of transparency, blind selection, outreach, and enlisting help. The result? They wound up with a significantly more diverse selection of speakers than most conferences have, because people felt they actually had a chance against the more well-known (white male) speakers, so people who normally did not bother to apply to conferences did to this one.
While the situation was different and, obviously, so was the solution, I want to include it anyway as a demonstration that we CAN do better. And that maybe we are unintentionally perpetuating a problem, and to fix it we need to recognize that and find ways to change.
And we can. It may be uncomfortable to admit we’ve made mistakes, but it is possible and it is worth the discomfort.