Saturday, February 28, 2009

The myth of the black Aspergian

When I began learning about Asperger’s and autism, one of the first things I read was that its incidence was virtually the same across all races. It was more common in males, but was otherwise evenly distributed throughout the world.

It was with that conventional wisdom in mind that I embarked upon my new career speaking to readers and other groups on life with Asperger’s. I began in the summer of 2007. Since then, I’ve made over 100 public appearances and spoken to some thousands of people who have a personal stake in Asperger’s or autism. One interesting point stands out.

The number of black Aspergians I’ve met can be counted on one or possibly two hands. Why might that be?

I have met many Asian Aspergians. When I went West, I met Mexican Aspergians. In some communities in the East, I meet Aspergians from Puerto Rico. In many cities I see Russian Aspergians, and indeed I see Aspergians from all the European countries. The fact that I have met so many Aspergians from America’s other “minority populations” suggests something is up.

If black and Hispanic people are the largest minority populations in America, why don’t I meet them in similar numbers? Hispanic Aspergians are common at my city events. Black Aspergians are nowhere to be seen.

Perhaps they are shy, you say. Maybe they visit me online. Maybe that’s true. I have no way to know the ethnicity of blog visitors. I will offer this tidbit: Look Me in the Eye is sold in over 20 countries, and in the last 30 days my blog saw traffic from 88 countries. That suggests Asperger's does indeed reach across many races, countries and cultures.

I have considered several possible explanations for the absence of black Aspergians at my events.

It’s been suggested that the population is smaller - fewer black kids are diagnosed with Asperger’s because they receive a lower level of care than other kids. But if you believe that, how do you explain the Hispanic and immigrant kids I meet with Asperger’s? Do you believe their schools and care are better?

It's been suggested that they are poor, which is another marginally insulting explanation that I don't buy. I meet plenty of poor white Aspergians. They come to events even though they don't have money to buy books. Why should they be different?

It’s been suggested that most books are read by white females, and my audience at events is simply a reflection of this demographic reality. That readership statement is borne out by much market research, and I can accept it. It may explain the makeup of the largest portion of my audience at events. But it does not explain why I see members of the other groups (Hispanic, Asian, etc) in greater numbers than black people.

I confronted this question last fall, when I spoke at the annual convention of the Asperger Association of New England. There were 750 people in the crowd that day, and one black female said, “Where are the black guys with Asperger’s?” They certainly were not in that room. We had affluent Aspergians, and poor Aspergians. We had tekkies and animalists. We had all sorts of people. What we didn’t have in that group were black Aspergians.

Some people have suggested racism holds the key. Maybe black Aspergians don’t feel welcome in groups like the AANE, they say. Anything is possible, I guess, but when I think of racism in the context of my own life, one thing stands out: Part of my obliviousness to non verbal cues includes obliviousness to the race or appearance of any other person. If my own life is any guide, we Aspergians may be largely oblivious to the triggers for racism in neurotypicals. So my own life experience makes me doubt that explanation.

I’ve now got some questions of my own about this:

Could there be something different about black American culture that somehow better integrates Asperger’s into the general population, thereby rendering them invisible? I think Asian cultures integrate Aspergian behaviors into society at large, but Asian Aspergians remain visible. Do black Aspergians have a secret the rest of us might want to know?

Is there some (genetic) difference in black people that makes them less susceptible to Asperger’s? If so, what is it?

We have culture and genetics. What else is there?


China said...

This could possibly be support for the Vitamin D defiency theory as a cause for the increase in autism.( Black people get outside more and aren't so afraid of the sun as most of us have become, so they aren't D deficient - maybe.
Or it could be a cultural thing. I have two children with albinism (one also with ASD) and it seems that black people are a little under-represented in the albinism groups I've been a part of too.
I met a black woman at the store once whose child obviously had albinism. The child's unique light complexion, pale eyes, and obvious vision impairment were my clues. I tried to introduce myself and told her my daughter had albinism (is albino) also, but she adamantly denied that her child had albinism. She did not claim she was bi-racial though. I thought it sad and strange. In some cultures impairments or differences are more shameful. Could this be the reason?

smauge said...

VERY interesting - as an Australian (mother to an aspie) I have no valuable input to your discussion, but the theory of black Americans having some secret better way of intergrating aspies into their community could prove valuable if there is some truth found in it. I look forward to updates on this subject.

John Elder Robison said...

Thanks for your comments. I had some photos to upload too, so I copied this post to my blog at Psychology Today. We'll see what comments it draws there

Strange Behaviour said...

I'm hoping for a reasonable, non-political/racist discussion here.

I have often wondered if there is some kind of genetic link between autism and the hispanic population. As a casual observation, there seems to be a far greater representation in my kid's social skills groups and special ed classes. Is it that these kids are evaluated more frequently for educational placement due to the 'english as a second language' issue? I remember being asked over and over if my son had ANY hispanic origin and if I was SURE about it. Granted this was more than 10 years when less was known about autism and AS. I was surprised to encounter this question even at UCLA, where they are really supposed to know their stuff. (I haven't found any studies to support or debunk this notion.)

Kim Stagliano said...

Perhaps less access to full prenatal and post natal healthcare?

Dejahmi by Beth Respess said...
This comment has been removed by the author.
D & M said...

I'm an African American mom of an autistic child. Many Black kids are late to get diagnosed and then they live in areas where services are lacking. Having Aspergers probably makes the situation much more difficult because many Aspies are mis-diagnosed (ADHD, bi-polar, schizophrenic, etc...) I live in an area where there is plenty of awareness and a bounty of services. Plus, parents here will take school districts and insurers to court at the drop of a dime, so we are overrun with excellent, autism services. That can't be said for inner city and blighted, urban areas.

I am very active in my community, but I have never met an adult Aspie or HFA. Go figure! It makes no sense. But, there is also something Smauge hinted at that may/may not have validity. Because of our struggles, I do feel Blacks have a coping mechanism that could have physiological implications. I see it in myself. It's hard to explain, but it's almost like a Darwinian survival thing...putting us in survival mode quite often and I feel that may be applicable to the children subconsciously. If they're higher functioning, they may have this inert ability to grasp what is demanded of them socially. My son is making remarkable recovery and I attribute some of that survival mechanism in him.

John, I really loved your book. Literature by adult Aspies/Autistics themselves have given me so much hope and insight into our journey than anything else. It's an education in and of itself.

D & M said...

Sorry, I meant to say that I've never met a Black, adult Aspie/Autistic. I've met plenty of them of other races/cultures.

Jill Elaine Hughes said...

A significant proportion of the African American adult population is currently incarcerated. (I believe the statistic is 1 in 3 adult black males----staggering). It could possibly be that a lot of the undiagnosed autistics/Aspies in that population are among the incarcerated, due in part to their difficulties in adapting socially, which are then exacerbated by the existing social problems in inner cities.

I have no other data or science to back this up, I'm just speculating. But it seems plausible, since autism/AS occurs so much more frequently in males.

Dennis Sanders said...

Well, I'm 39 year old man, who is African American and was diagnosed with Aspergers last year.

I wonder if part of the problem is that the lack of services and the cost. Luckily, I have a good health care, but that's not the case with everybody. Going to see a specialist and in my case a psychiatrist as well and the price of medications means that the cost can be really expensive.

Another reason that I remember hearing years ago is about how African Americans were slow to go to mental health professionals- going to one was percieved as being weak.

I try to attend the support groups the autism society of Minnesota offers for adults with Aspergers and I happen to see a good number of fellow African Americans there.

We Black Aspies are out there, though.

Thomas said...

Traditionally, African American males seeking any kind of mental health services at all (the most common complaint being stress, and the most common disorders being depression and the impacts of trauma) have been most often diagnosed with schizophrenia, despite the relatively low prevalence of schizophrenia within the African American community. I believe it has to do with racism -- African American males are considered "scary," things to be controlled rather than reasoned with, and people with schizophrenia are considered "scary," things to be controlled rather than reasoned with, so they're often lumped together. There are very few African American male psychologists, psychiatrists, and neurologists, and the doctors' stereotypes can go a long way in clouding their judgment.

thegrauels said...

Yes, I feel all of your comments, Jill as well, have validity. I myself have wondered about the un-diagnosed, Black autistic population and incarceration. I can see how not understanding one's psyche or disorder can lead to big social programs, even sociopathological behavior, if unchecked. It is very sad to think about.

Our culture is very closed-minded when it comes to seeking psychological services. I got over that type of thinking real quick with my child and he does have a Psychologist, even thoug he's very young. She's ABA trained, has a Family Counselling Background and 10 years working with autistics. She came recommended by one of our autism support groups.

Dennis, I'm curous about the African American in your support group. Are they younger, older or a combo of both?

I'm happy to see my sista's like Tisha Campbell, Toni Braxton, and Holly Robinson Peete speaking openly about autism. Our community needs all the awareness it can get. There's also a prominent Black female attorney in LA with an autistic son who created an organization to create awareness amongst us, but I can't think of her name right now.

I think the reason why my child will grow up with a sense of respect and understanding for his condition is due to where we live and the services/projects he gets to participate in. We benefit from all the efforts of affluent, White moms who don't take shi* off of doctors and school districts and to me are at the cutting edge of autism treatment and intervention. They've paved the way and we're kinda riding that coat-tail, so to speak. But, I'm grateful for them because they have opened doors that I would not have been able to.

I want other Black autistics to get the same treatment, services and acknowledgement.

Sue said...

Hi John,
Thank you so much for writing such a wonderful memoir.
I first read Running with Scissors and found out about your book.
I knew little about Asperger's in spite of knowing the child of a good friend who also has it.
Your sensitivity and sweet kindness shines in your book. I am so happy for you that you have the life you worked hard to get.
I wish you all the happiness you deserve.
And....... I believe your father would be very happy and proud of your memoir :)
Thanks again for educating me.

Sue said...

Hi John,
I just listened to the audio version of The Wolf at the Table. Wow, I cried my head off at the end. I am really saddened by your brother's experience with your father. I am also amazed at his warmth and kind heart, in spite of all he went through.
I understand how two brothers can have the same parents and live completely differently, as is apparent in each of your books. I've seen it in my own family of origin. Both you and Augusten have touched me deeply with your writing.
I wish you both the very best and hope to find more of your work in the future.
Thank you!!! :)

Aspie_chav said...

When you talk about black, I assume you are talking about decadence from slaves. Being a slave was the biggest factor in wiping out the aspie gene in black people. As you probably already know, having Asperger syndrome can have an advantage to the civilization in general; but being an Aspie black slave, there was no opportunities for education, or any opportunities to progress, find like minded people, or express any interest any hobbies. The only thing they had was all their weaknesses to deal with by themselves with no support.

I have more to say about this, but I have things to do at moment

deletedblog said...

It has nothing to do with lack of access, poverty, or any of those things mentioned.

However, it is rooted in slavery. Yes, slavery. Regardless of disability, blacks have to be normal. If you aren't, you'll learn, even if your caretakers have to whip it out of you.

Meltdowns? don't exist because "you can't act like that in public, and if you do, I'll whip your a---" Thus, most of us are some of the most well behaved children you will ever meet. In fact, all of the behavior commonly associated with Aspergers is quickly "fixed" when witnessed, whether through intimidation, or discipline.

I slipped through the cracks. No one can tell me that the little 'weird" child who turned over her bike to spin the tires, collected and counted rocks, avoided eye contact, stayed in a fantasy world, sat upside down to watch TV, wall crawled, stared in any reflectile object, spoke like a news anchorwoman, disturbed by the buzzing noise of the flourescent lights and smells,felt sorry for walls, learned how to play a B3 hammond on her own, loved to imitate cats and any other sound was not an aspie.

Yet, no one recognized it and just felt safer calling me the weird one. I survived life by joining the military where there was structure. Yet, I had a hard time there because people thought I was aloof, arrogant, rude, narcissistic, gay, etc. So I left, only to wander from state to state, hospital to hospital as a sonographer. The profession suited me well, yet I am always read with the aforementioned disclaimers.

Now I know who I am, only as a result of my daughter who was recently diagnosed. I watch a mirror image of myself. We exist. Unfortunately, we are labeled with "angry black woman" because we are sometimes stand-offish.

Rasha Hamid said...

I think Black/brown boys, in particular, are more likely to be seen as difficult than Aspie. So while there's definitely the piece about how mental disorders are seen in Black communities, that's not the extent of the issue. When Black boys have social difficulties in classrooms, teachers and school staff often see them as aggressive and angry, preventing them from noting Aspie traits that may actually lie at the root of the problem. If these same boys are offered services that help them navigate social situations, they'd benefit. Instead, they're punished or suspended.

Autism's Love said...

In all honesty, I know of several black aspies, myself included. I am formally diagnosed with Asperger's Disorder. My son is diagnosed with Autism/PDD-NOS. At one point and time I was on a mission to educate people in my community about Autism/Asperger's. What I encountered were many people who did no know about Autism or Asperger's and in many cases were not interested in knowing. I've even heard people in say that Autism is a "white disease".

I can't rightly say why there aren't many "visible" black aspies. I can tell you from my personal experience that there are not many blacks that believe me when I tell them I am an aspie. I've been met with much scrutiny and at time disdain for even mentioning it. I am also aware that many black males who suffer from similar traits are often diagnosed with ADD or ADHD which can present very much like Asperger's. So the question of if we exists...yes we do. Are we being properly diagnosed...not so sure. Another defining factor is how church perceives Autism/Asperger's. I have heard stories of people trying to get help from their church only to be told that they need to be delivered or that they have a demon inside. I have not personally experienced this, but I will say there is little to no support in many of the churches we have attended.

Black Aspies do exist, but I for one can't speak for the masses. I can only speak about my personal experience. Perhaps it is fear of what might happen when a truth is spoken but there is no support or acceptance from those who are around you. Perhaps we have so much against us that we need not claim another issue. Perhaps due some of us have experienced severe beatings for odd behaviors that were completely out of the norm. I know I was. I would be beaten for talking outwardly and openly about facts that I found interesting. I'm part of that generation where children were meant to be seen and not how dare I speak opening in the company of adults.

I possessed many aspie traits growing up. Apparently my traits weren't anything anyone was accustomed to seeing. There was no explanation. My parents turned to what they new best...discipline. If I stemmed, I was beaten. If I spoke out of turn...I was beaten. If I had a meltdown...beaten and so on. I did not respond to social cues like others in my peer group. I was always seen as different. Often times teachers would say things like, "she does not participate in classroom activities, but if there's a prize offered she beats everyone in the class." I was even beaten for that. No one could read between the lines and they didn't even try. I was labeled slow and I dare say even retarded even thought I am a self taught reader who was able to read chapter books like "Hardy Boys" before entering kindergarten.

I don't have the answers to why more black aspies aren't visible. I just know by the way I was raised that my aspie traits were not something to be tolerated. Massive ignorance prevails and I've yet to see a way around it.

Autism's Love said...

I know of several black aspies of varying ages, myself included. I am formally diagnosed with Asperger's Disorder. My son is diagnosed with Autism/PDD-NOS. At one point and time I was on a mission to educate people in my community about Autism/Asperger's. What I encountered were many people who did know about Autism or Asperger's and in many cases were not interested in knowing. There have been times I've heard people say that autism was a "white disease" and that was that.

For me, scrutiny and lack of acceptance are often present even when I share information about my experience with other black parents having autistic/Asperger children. They often do not believe me or don’t want to "accept" that I am an adult who is on the spectrum. Could this be because they fear that something could be "wrong" with them as well? Perhaps on the surface I appeared to be normal, so there's no way anyone would believe me. One time, at my son's music therapy session I saw two parents videotaping me. It took a while for me to figure out what they were doing, but I got it after a while. I guess it was easier for them to see some of my traits during the playback of their videos. On one hand I was highly offended, yet on the other hand greatly relieved. Finally, they would see what I've been telling them all along. I just didn't expect the outcome to be what it was. The next time I saw those two ladies, one tried to avoid speaking with me and the other one spoke to me in a very slow and deliberate manner. Hmmm, funny how things change when one's truth is revealed.

You may want to consider the marginally disproportionate diagnosis of ADD/ADHD in black communities. This may play a role in who identifies as aspie or not. Afterall, if many of us are already diagnosed ADD/ADHD then why would we seek a diagnoses of Asperger's if we even know what that is? Asperger's and ADHD are very similar in how they present themselves. Let’s face it, you could walk into a black community and ask various people if they know about asperger’s and many will not, but walk into that same community and ask if they know about ADD/ADHD and you will get a different response. To answer your question of if black aspies exist...of course we do. Are we being properly diagnosed...more than likely not. I am not an expert, if there is such a thing, however I have noticed that several blacks that I know, especially males having aspie traits have already been diagnosed with ADD/ADHD at a very early age (2-5 year).

Another defining factor rarely mentioned may be church and how religion plays a role in how communities perceive Autism/Asperger's. I have heard stories of people trying to get help from their church or even religious family members only to be told that they have a demon and need to be delivered. I have not personally experienced this, but I will say there is little to no support in some of the churches we have attended.

One final thing…perhaps as a race we have so much against us already that we need not claim another issue.
I hope what I’ve shared helps. I can’t speak for others, I just know by the way I was raised that my aspie traits were not something to be tolerated. Massive ignorance prevails and I've yet to see a way around it.

Amy Scanlon said...

Here's a somewhat out there possibility.

Keep in mind that this is just a provisional hypothesis and the truth might be something like misdiagnosis/underdiagnosis instead.

But I can think of one thing that African American culture might have a tendency to teach to children more than most other ethnic groups: rhythm.

What would that have to do with Aspergers? According to some schools of thought, quite a bit. Some scientists have argued that at least some forms of higher functioning autism and possible at least some Aspergers may be at root a movement disorder, and rhythm and timing might be central to understanding this disorder.

And indeed, there are a number of therapies that utilize rhythm as a central part of their program such as interactive metronome, InTime (a bone conduction therapy where playing a little drum is part of accompanying exercise, and NeuroNet, and more.

I know that personally, I started to "grow" a much, much more innate intuition to learn from other people socially, how to respond to various situations. It was as if, when my sense of rhythm went from can't handle a toddler hand clapping exercises to being able to dance to polyrhythmic music and drum, a lot of other things seemed to "come with it". It it is hard to explain it. One of the funny things is that when I tried to explain it to other people, various notions about race came into it.

At first I was mostly outraged at the relentless stereotyping. And indeed some of it was blatantly racist and from people I didn't really expect that from.

But after I filtered through the nasty stereotypes, I thought a lot of people might be picking up on a lot of thing where a sense of rhythm might be connected to a lot of things in the brain, but where our society has often viewed them through a lens of "blackness" or "whiteness".

I want to be very, very careful that what I'm suggesting does not degenerate to blatant stereotyping. My brother has always been a fabulous dancer and I suffered from ear infection after ear infection after ear infection at a time. So obviously there are more people who don't fit this model than can be dismissed as "exceptions to the rule".

Nor do I want to portray myself as some culturally deprived victim. Indeed I shudder to think about the language deficits I might have had if I didn't have an Irish American mother (and that subcultures love of language) who went above and beyond the call of duty to make sure I had good language development despite all the ear infections.

Now it could very well turn out that what I'm suggesting is just another non-starter home brewed theory, and that the real issue is misdiagnosis.

But then again, it might be worth asking certain questions such as whether rhythm based therapies might have a larger role than they've traditional been given.

And whether some of the more persistent racist stereotypes are simply gross exaggerations of subtle effects of rhythm training on the brain....indeed training that can often be successful well beyond childhood.
But it is possible that if one American subculture tends to teach rhythm to children more and earlier than most of the others, that there may be a protective effect.

Chelle Weatherspoon said...

I was so glad to find this article, because I wondered if I was the only one who noticed this. I sought it out because I have an African-American child on the spectrum of autism. As he grew older, the Dr. informed me he is also aspergers. When he was young he did not talk but was extremely intelligent. When he learned to read he started to talk extremely well with perfect diction. He could read whole novels. He learned very rapidly from things he read. He is now 15 and can take broken computer components to make working computers and is very good with electronics. I had so many problems with the schools. So I homeschool him and keep him sheltered right now. When he is seventeen I am sending him to college. When your black child has aspergers it simply is not recognized because society does not like to see anything special about young black males. If they are not gang banger or on drugs they simply don't recognize them. I wish the author of this article would contact me.

Jesse said...

The reason for LESS Black-Folks with Asperges, is due to Melination!
Melination is Extremely important for HUmans.
For one the HUman egg needs to be coated in melanin in order for the one lucky sperm to achieve success.
Melanin is also found in Water and nervous-tissue.
It connects us with The Akashiak Records and is basically our intuitive-relay-system.
FACT:. During Vietnam War, they did experiments on Pineal-Gland, 75% of Black-men's Pineal-Gland was larger and pulsating at a much Higher-Rate.
Where as 75% of white.albinoid.paleskin was CALCIFIED!!!!

Unknown said...

Regarding your section on racism, I think it has less to do with the black Aspies perception of racism, and more how racist outsiders might judge the black Aspie. Behaviors that in a white, Asian, or even Hispanic student for example, send up flags to teachers that say "autism!" might instead send up flags saying "disruptive." If the students are not diagnosed young, it becomes increasingly unlikely that they will played on the spectrum rather than given a less reasonable label.
That's my theory, anyway.