Like everywhere else in society, white privilege is present and dominates the autism community. This is prevalent in the fact that ethnic minority children tend to be overlooked for diagnosis and that white upper middle class families are more likely the ones to receive early diagnosis and services. Getting a formal written diagnosis of autism is a privilege in of itself since it is the gateway to receiving services and supports. This is due to the fact that Leo Kanner, the clinician who helped play a big role in the formulation of autism as a formal diagnosis category wrongly assumed that the disorder was more common in upper middle class white families. The consequence of Kanner's actions is the reason why autism is a "whitewashed" disorder. This attitude and belief still pervades today in the 21st century. It also doesn't help that the media reinforces white privilege when it comes to autism by frequently portraying Caucasian male characters in film and television. The structure of white privilege is very powerful because it affects the conversation and priorities on autism as well as whose stories or narratives get told and recognized in the greater autistic community.The recent events in which white nationalist groups show up to protest in Charlottesville, Virginia armed with torches which resulted in the death of a 32-year old woman, has sparked a lot of emotion and conversations about racism in this country. Like everyone else, I am shocked that an event in which Neo-nazi and white supremacy groups outwardly express their bigotry towards minorities would happen in 2017. I thought the days of white supremacy, KKK, lynch mobs and overt racism were behind us and were solved by the civil rights movement. It was hard to articulate my thoughts on this matter and it took awhile to compose a facebook status. Then again I am not surprised that an event like Charlottesville took place since there still seems to be ambivalence of embracing differences in terms of racial, religious views,sexual orientation as well as disability that takes place in this country. These recent events in Charlottesville has prompted me to think about how America in the 21st century still supports a structure that favors Anglo whites. More specifically, Charlottesville made me examine in how white privilege dominates the autism conversation and community. It is with these thoughts which will shape the subject of this post. I just want to issue a trigger warning since some parts of this post might come across as scathing and might make some readers uncomfortable or defensive. In particular, the examination and questioning of white privilege might make some of my white readers uncomfortable. This is just an opinion piece from my perspective and observations. It is not my intention to accuse whites as being racist. In my own life, I know a lot of white people who are all around good people. This post is critiquing the power structure of white privilege and not specific white individuals.
As a Japanese American autistic self advocate, I have noticed over the years that the majority of diagnosed autistic people are overwhelmingly white. However, it wasn't until I got involved in self advocacy that I realized how rare and uncommon someone like myself was since there are not too many self advocates of color in general. I also realized how extremely lucky I was to have received an early diagnosis since as I discussed earlier that autistic children of color rarely get an early diagnosis. Going back to the relative absence of self advocates of color, it is hard for people like myself to get the recognition in the autistic self advocacy movement. When you think about it, the most widely recognized autistic self advocates who are frequently asked to present at conferences are Caucasian and almost always come from privileged backgrounds and have advanced degrees.
A well known example of this is Temple Grandin. While I admire Temple Grandin for setting the path for other autistic self advocates, I find it problematic that the greater autism community treats her like an "autism Jesus" in which her teachings and views are equivalent to the holy bible on autism and should be applied to all autistics. As a result other autistic voices (particularly those of color) are often overlooked or not given much attention. As Lydia Brown states in her post "Critiquing Temple Grandin," a large part of Grandin's widespread recognition is connected to her race and social class. Echoing Ms. Brown's sentiments, Grandin grew up in a very wealthy background which afforded the privilege to get her where she is today. Her family was able to afford a nanny to work extensively with Temple to develop her social and self care skills (which can be equivalent to the 40 hour a week ABA that often is prescribed to autistic kids). She also went to a prestigous boarding school (another luxury afforded to the most privileged families) where she met her science teacher who played a big role in Temple's decision to pursue a career path in animal science. Most families (especially ethnic minority families) are not able to afford some of the luxuries Temple was given. Although my family's income was modest, there was no way that my parents could afford to send me to a boarding school or have a nanny due full time ABA with me. In fact they did not want to go down the route of spending a lot of money doing an extensive therapy regiment on me because it was too expensive and too intrusive for us. In sum, the overemphasis on white self advocates such as Temple Grandin prevents the voices of autistic self advocates of color from getting recognition.
Another example in which I believe white privilege infiltrates the autism community, is that the most well known and largest autism charity Autism Speaks was started by Bob and Suzanne Wright who also come from a very privileged background as being former news anchors on NBC. Being former TV news anchors affords them the privilege of being connected to Hollywood as well as celebrities. The backing of celebrities allowed Autism Speaks to have so much influence on how autism is discussed in the greater society and why they were allowed to perpetuate negative messages about the condition for so long. Most importantly, they played a big role in how funding was allocated for autism research in terms of finding causes and cures and early intervention. As a consequence of this, there is relatively little research that is adequately addressing the needs of autistic adults. Autism Speaks does relatively little to address the priorities and needs of the autistic community. I feel that they don't do enough to address disparities in autism diagnosis among ethnic minority groups as well as addressing cultural gaps and barriers to getting the right services and accommodations. This is why there are smaller disability rights groups that exist because I feel Autism Speaks is too busy hosting expensive Galas and national walks. In sum, the reason why I believe Autism Speaks grew up to be a very powerful organization is because of its roots in white privilege.
The events of Charlottesville has made me examine the power structure of white privilege in the very community that plays a big role in my life: the autism community. Although the reference to Charlottesville might not make sense to some readers , I just wanted to get people to think more deeply how the autism community is geared and tends to favor upper middle class white families. We need to be better at recognizing and addressing cultural barriers that so often effect ethnic minority families in obtaining a diagnosis as well as services and supports for their kids. The best way to this is that we need to reach out to these families and educate them on the signs of autism as well as resources that are available in the community. The good news is that there are organizations and projects going on that are attempting to address these issues. Most importantly, there needs to be more resources to empower and develop autistic self advocates of color. By having more autistic self advocates of color will send the message to society that autism is not exclusive to Caucasian Americans. Lastly, I want whites to act as allies and to use their privilege to address inequality and prejudice both in and outside the autism community. Like I mentioned earlier, I know plenty of whites who are empathetic and want to help close the racial gap that is currently present in the autism community. If we work together, we can accomplish our goals on equality faster. I hope this post has opened people's eyes on the inequality that still exists in the neurodivergent community.
Some Helpful Articles that address the race problem in autism :
- "Autism's Race Problem" -Pacific Standard
- "Autistic Girls of Color: Missing from Media Narrative"- Leanne Libas
|Image: The first Anthology consisting of autistic writers of Color produced by the Autism Women's Network|