What’s in a Word: Asperger’s and White Privilege9 min read

We often hear, “If you’ve met one person with autism, you’ve met one person with autism.” This maxim, coined by Dr. Stephen Shore, holds true.

Still, there are some rel­a­tively con­sis­tent traits that are easily rec­og­nized. In schools, on social media, and in pop­ular cul­ture, the face of autism is…

White.

Mostly, it’s white men with the stereo­typ­ical IT/physics/engineering pro­cliv­i­ties. But why?

There are a number of rea­sons this phe­nom­enon hap­pens, and below I’ll con­jec­ture about a few from obser­va­tion and my informal research. For the pur­pose of this series, I use the word Asperger’s to indi­cate those autis­tics who go undi­ag­nosed because the APA diag­nostic guide­lines are now based on how “obvious” the pre­sen­ta­tion of symp­toms are.

Please note that every family is dif­ferent, and this article is meant to address sys­temic trends. Not every Black and Brown family will have the same expe­ri­ence, and some white fam­i­lies might also expe­ri­ence these phe­nomena.

“Environmental” Factors

When I was a teacher, I once had a behavior spe­cialist warn me about one of my stu­dents. He’s trouble.  I don’t expect he’ll be here too long.  He’s a thug and a trouble-maker. The boy was dark-skinned, with ill-fitting clothes, ragged shoes, and a hair cut that looked like he’d done it him­self. He looked a few years older than his peers.

When I glanced at him, I felt my chest tighten with sad­ness. He was sucking on the side of his hand and rocking back and forth. This was the start of a two-year battle to help him obtain an IEP, a ser­vice plan for stu­dents with spe­cial needs. He had entire Goosebumps books mem­o­rized, made strange noises in class, often tripped over his own feet, gig­gled at things he didn’t under­stand, and had a ten­dency to try and “escape” when con­fronted. When he was excited, his hands flapped.

The first time I went to bat for him, he was facing place­ment in alter­na­tive school. When I looked at his dis­ci­pline his­tory, his refer­rals were for making noises during class, repeating teachers’ words back to them, walking away when con­fronted, and tap­ping his desk or other dis­rup­tive but non-threatening behav­iors.

I begged my admin­is­tra­tors to rec­og­nize that this wasn’t a mali­cious child, it was a mis­un­der­stood child with autism. The first time he’d been eval­u­ated, he was found inel­i­gible because his symp­toms were con­sid­ered to be “envi­ron­mental.” This is a euphemism for “ain’t got no home training,” a politically-correct to say that he was wild because of how and where he’d grown up.

Generational Poverty

People of color in majority-white coun­tries are not always poor; how­ever, racial and ethnic minori­ties are dis­pro­por­tion­ately impacted by poverty and specif­i­cally gen­er­a­tional poverty.

White priv­i­lege often trans­lates to finan­cial priv­i­lege and edu­ca­tional priv­i­lege. This means that there are more edu­ca­tors, health care workers, and other pro­fes­sionals in the fam­i­lies, places of wor­ship, friend cir­cles, and neigh­bor­hoods of people with gen­er­a­tional wealth.

Having these pro­fes­sionals spot the warning signs, being able to name-drop during doc­tors appoint­ments (My sister-in-law, Karen, is a spe­cial edu­ca­tion expert on the school board, and she says…), and being con­nected to power struc­tures pro­vides more account­ability for edu­ca­tors and health care pro­fes­sionals to pro­vide accu­rate diag­noses and ser­vices.

Further, those with pri­vate insur­ance have much more freedom to choose spe­cial­ized health care providers who refuse to accept Medicaid.

Generational Privilege

Diagnosticians are typ­i­cally doc­tors with areas of spe­cial­iza­tion; how­ever, only about 5% of gen­eral prac­ti­tioners and family doc­tors are Black, while over 75% are white (Xierale & Nivet, 2018). The per­cent­ages skew even more for spe­cial­ists. Not sur­pris­ingly, studies indi­cate that the majority of med stu­dents are from homes with six-figure incomes and par­ents with grad­uate degrees (Sreekumar, 2016).

This means that the majority of physi­cians are from white, upper-class homes. They learned from pro­fes­sors and physi­cians who were from multi-generational white, upper-class fam­i­lies. Those who have defined and char­ac­ter­ized autism, those who write about it and are esca­lated into inter­na­tional acclaim as experts, have con­ceived it through the per­cep­tion of upper-class, neu­rotyp­ical white­ness.

They have a pic­ture of what autism means, and that pic­ture is the autistic child from white sub­urbia and how it is at odds with that lifestyle. There is very little research and lit­er­a­ture accounting for how cul­tural dif­fer­ences may cause autism to present dif­fer­ently.

Stereotypes

Several stereo­types pre­vent people of color from having their autism rec­og­nized, even late into adult­hood.

In a white middle- or upper-class family, an aspie is an ele­phant in the room. The person who rejects the social iden­tity that often accom­pa­nies the family name– the polit­ical ori­en­ta­tion, reli­gion, family busi­ness, norms, and core beliefs– becomes imme­di­ately the black sheep of the family. White par­ents are eager for someone to “fix” this kid who actively seeks to buck the status quo.

But, a person in a Black or Brown family who works actively against social norms, who defies authority, and who is loud or dis­rup­tive is seen as simply fit­ting into a cul­tural stereo­type. It’s thought of as jus­ti­fied enmity by pro­gres­sive thinkers and as cul­tural “enti­tle­ment” by those who deny their own priv­i­lege.

Another dom­i­nant stereo­type which seems to pre­clude many Black and Brown people from being diag­nosed as autistic relates to extra­or­di­nary talent. Autistics often have a talent or area of intense focus in which they excel. Many have per­fect pitch, rhythm, or near-photographic memory. They may be excep­tional with words, math, art, or music.

In America espe­cially, people of color are expected to have some kind of excep­tional talent. This stereo­type dimin­ishes the deserved appre­ci­a­tion for the con­tri­bu­tions Black and Brown people make to cul­ture and art, but it also reduces their humanity to the nov­elty of “per­former.”

How many films fea­ture a Black underdog arche­type with oth­er­worldly musical gift­ed­ness or ath­letic prowess? So, the spe­cial­ized tal­ents and highly-crafted skills of Black and Brown autis­tics are regarded as expected, while the strug­gles asso­ci­ated with being autistic are ignored.

Culture

In white fam­i­lies, advo­cating for your child often means chal­lenging authority fig­ures and demanding better treat­ment and access to sup­ports. Going up against teachers, coaches, health and mental health­care workers, and even law enforce­ment is some­thing a white parent men­tally and emo­tion­ally pre­pares to do for his or her chil­dren, should the need arise.

The expec­ta­tion is that the squeaky wheel gets the grease and that sup­port sys­tems are in place to, well, pro­vide sup­ports. A white parent knows that the police will be respon­sive and dili­gent if their child needs pro­tec­tion. They trust that schools and doc­tors have their child’s health, safety, and edu­ca­tion as a pri­ority.

In many Black and Latinx fam­i­lies, the expec­ta­tion is that prob­lems have to be han­dled “in house.” Generational and social mes­saging have estab­lished that authority fig­ures are not there to be sup­port but to super­vise and penalize. This con­tributes to stigmas asso­ci­ated with having a diag­nosis of any­thing related to mental health or devel­op­mental delays/learning dis­or­ders.

Often, because of a jus­ti­fi­able dis­trust of the power struc­tures that are pri­marily man­aged by white lead­er­ship, people of color seek guid­ance and direc­tion from the local faith-based com­mu­nity and con­sult the wisdom of sea­soned and expe­ri­enced par­ents in their social cir­cles. This vil­lage approach works and func­tions beau­ti­fully in many ways, but unless someone is well-acquainted with autism, their intu­itions will fail them.

To seek sup­port within predominantly-white insti­tu­tions is to admit vul­ner­a­bility to the people and sys­tems who are cre­ating and main­taining oppres­sion. Black and Brown par­ents are reluc­tant to seek ther­a­peutic inter­ven­tions or to add on another label that will stig­ma­tize and dis­ad­van­tage them or their chil­dren fur­ther.

Older gen­er­a­tions, espe­cially, are more reluc­tant to accept any label or ser­vice that may cause them or their chil­dren to seem weak because vul­ner­a­bility in a racist society increases the like­li­hood of being seen as a dis­pens­able lia­bility or an easy target.

The Heart of the Matter

Essentially, people of color feel that they will not be received with kind­ness, empathy, and respect when seeking sup­ports from edu­ca­tion and health­care sys­tems that are not rep­re­sented equally by pro­fes­sionals of color. They don’t trust authority fig­ures to have their or their chil­dren’s best inter­ests at heart. They fear that their chil­dren will not be truly under­stood and seen by pro­fes­sionals.

They’re not wrong, either. Studies demon­strate that for people of color, doc­tors hes­i­tate more to make an ASD diag­nosis com­pared to white clients, fewer dol­lars are spent on ser­vices and sup­ports in their com­mu­ni­ties, they are 5.1 times more fre­quently mis­di­ag­nosed with behavior dis­or­ders, and they are diag­nosed later in life (Rentz, 2018).

A Plea to Educators, Researchers, and Healthcare Workers

If you work in direct con­tact with the autistic pop­u­la­tion, con­sult with adult autis­tics and learn about them. Learn about autistic chil­dren from autistic par­ents. Find them on social media by using the hashtag, #ActuallyAutistic. Follow their blogs. Follow this blog. Interact with them and get their input by using the hashtag #AskingAutistics. You will find that they are ages ahead of the neu­ropsy­chi­atric com­mu­nity in map­ping out and char­ac­ter­izing autism.

Invest more in research under­standing the cul­ture of autis­tics instead of researching for a cure. The vast majority of us don’t want to be cured. Find out how it feels and what it means to be Black, Latinx, Asian, indige­nous, gay, trans, female, Muslim, Jewish, Christian, Hindu, rich, poor, or working class and autistic. Ask Black par­ents what their Black autistic chil­dren need. Understand the human rights crisis in not affording a diag­nosis to those of us who are “barely notice­able.”

Autistic minds are invalu­able to social progress. They are respon­sible for the hard­ware and soft­ware that made this blog pos­sible. They were some of the most bril­liant artists, authors, sci­en­tists, and rev­o­lu­tion­aries to ever have left an imprint on society. Black autistic lives matter, and failing to empower them with a diag­nosis is to add to the uphill bat­tles they face to carve out a safe and sus­tain­able life in an antag­o­nistic society.

Being an Autistic Person of Color

Being autistic means that there is tremen­dous like­li­hood that some­thing you do is going to be mis­in­ter­preted by authority fig­ures, edu­ca­tors, employers, and law enforce­ment. Being autistic and not being diag­nosed increases the like­li­hood of all of those things, which is com­pounded when someone is Black or Brown.

People of color already face dis­crim­i­na­tion. Autistics already face dis­crim­i­na­tion. Both struggle to be rec­og­nized as fully autonomous, valu­able human beings deserving of respect and equal oppor­tu­nity. It is a valid fear that claiming autism, the invis­ible part of the equa­tion, will increase the hard­ship.

The sad fact is that with or without the diag­nosis, dis­crim­i­na­tion is likely. Sometimes it’s in the form of school­yard bul­lies, and some­times it’s in nuanced inter­per­sonal office pol­i­tics. At least, with a diag­nosis, there is a lan­guage to define the nature of the dis­crim­i­na­tion.

What having a diag­nosis does is increase fed­eral pro­tec­tions that schools, employers, physi­cians, and other authority fig­ures are required to observe. No mar­gin­al­ized person expects that the law is going to pro­tect them from big­otry; how­ever, it gives autis­tics and their loved ones leverage to self-advocate.

References

Rentz, C. (March 19, 2018). Black and Latino children are often overlooked when it comes to autism diagnosis. Shots Health News from NPR. Retrieved from https://www.npr.org/sections/health-shots/2018/03/19/587249339/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism

Sreekumar, P. (September 24, 2016). Wanna go to med school? You’d better be rich! in-Training: Stories from Tomorrow’s Physicians, (2). Retrieved from http://in-training.org/wanna-go-medical-school-better-rich-12070

Xierali, I. M., & Nivet, M. A. (2018). The Racial and Ethnic Composition and Distribution of Primary Care Physicians. Journal of health care for the poor and underserved, 29(1), 556–570.
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3 Comments

  1. While I totally agree with every­thing you’ve written here, I can help thinking back to when I was in the ser­vice. Asperger’s wasn’t a term when I served but it was clear that there was “some­thing not right” with me. It seemed my African American com­rades in arms tar­geted me because I was an easy target than others. Note: they never trou­bled the red­neck moun­tain boy who openly stated he was in the KKK. Again, Aspergers wasn’t a term back then but one African American referred to what I had as a ‘white boy’s con­di­tion.’
    I guess what I am trying to say is that I sup­port your claim that more infor­ma­tion needs to be avail­able to non- white par­ents whose chil­dren may be on the autistic spec­trum and then sup­port given to them as much as priv­i­leged white people who chil­dren are autistic.

    1. Author

      I think the article addressed to a degree that there is def­i­nitely a cul­tural aspect to having an intol­er­ance for what is per­ceived as vul­ner­a­bility. I think bul­lying is a phe­nom­enon that knows no demo­graphic. I’m sorry that hap­pened to you.

  2. Thanks for sharing your analysis. This is really insightful, and it helped me better under­stand the inter­sec­tion of autism and race.

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