One Negro speaks of rivers: change
the term, but the color’s still the same – and I speak
of computer hard drive brains, over-wired
circuitry, and hearts that fracture
at the slightest jolt. The souls of Black Folk?
What about the souls of autistic Black Folk?
We mud colored, we chocolate colored, we
beige colored. We green colored, we alien.
(from my poem, “1 in 88, Nicole Style”)
When Paul Robeson was alive, autism was not very well known or understood. By the time he was a young man at Rutgers, neither Dr. Leo Kanner nor Dr. Hans Asperger had coined their terms for what we now call autism or Asperger Syndrome – those discoveries would not come until the early 1940’s, when Robeson was well into his theatrical and singing career. The public was not really aware of autism until at least the 1960’s, and unfortunately, awareness and media coverage on the subject came in the form of articles that declared autistic people as “mental cripples” such as this infamous 1965 Time Magazine article documenting Dr. Ivar Lovaas and his research at UCLA which led to the ABA (Applied Behavioral Analysis) methods of today. (Warning to abuse survivors: this article contains potentially triggering material, as it discusses what would now be considered physical and verbal abuse.) And Robeson lived – and died – before individuals such as Dr. Temple Grandin began to speak public about autism, themselves as an autistic people, and began to allow the public to gain a glimpse into their worlds and realities.
Given all of this, I don’t know if Robeson ever heard of the term “autism” (and I imagine he certainly would not have heard of Asperger Syndrome) or if he even gave any thought to the matter. Until three years ago, before I began to consider that I was an Aspie, I didn’t either. Autism was so far removed from my mental world of possibilities and was so ingrained into my subconscious that it was a “thing that happened to other people” – mostly boys and young men – that when my fiancé suggested five years ago that I might be autistic, I nearly laughed in his face and thought there couldn’t be anything more ridiculous. If I didn’t know much about autism in 2008, it’s safe to assume that Robeson would have known even less in 1918 – or 1938 – or even 1968.
And now over a hundred years later, I find myself beginning to examine Robeson and trying to make sense of my own existence. I wonder how Paul Robeson experienced this world. I also wonder if Paul experienced the gnawing feeling of being “different”. This feeling I speak of might have not just been felt as a result of his awareness of being African-American in the twentieth century and the prejudice dealt to him because of his color. What I mean by “different” is the additional subtle knowledge of relating to and experiencing the world in a drastically different way than most other people.
Not too long ago, I began reading W.E.B. DuBois’ The Souls of Black Folk. DuBois was also painfully aware of his difference, as he documents in the first chapter, “Of Our Spiritual Strivings”. He speaks of his first awareness of it as a young boy in the following passage:
“I was a little thing, away up in the hills of New England, where the dark Housatonic winds between Hoosac and Taghkanic to the sea. In a wee wooden schoolhouse, something put it into the boys’ and girls’ heads to buy gorgeous visiting-cards—ten cents a package—and exchange. The exchange was merry, till one girl, a tall newcomer, refused my card,—refused it peremptorily, with a glance. Then it dawned upon me with a certain suddenness that I was different from the others; or like, mayhap, in heart and life and longing, but shut out from their world by a vast veil.”
In my case, I also grew up knowing I was different — but unlike DuBois, whose difference was apparent, I did not know why. The first knowledge of this came at around age seven when I had trouble interacting with other children at school. I found myself shut out of games and social interactions at school. This pattern continued until I graduated from high school, and the only answers I was ever given for the bullying were short, succinct reasons which focused more on my “defects” than anything else:
“Because you’re a dork.”
“You’re a weirdo.”
“Nobody talks like you.”
“You talk white.”
“You act too smart.”
“You’re a freak.”
I experienced some bullying in college, but for the most part, I went out into the adult world trying to interact with others. But there were times that I stood off at a distance just watching them, trying to figure out what the hell it was that they were doing with such success that I kept either not doing due to lack of knowledge or doing and failing miserably. As I watched them, the gnawing feeling of being “different” lingered in the back of my mind. After a while, I concluded that I was eccentric at best or a misfit at worst. But this conclusion did not help me in the least – I still felt apart from the rest of humanity, still separated by some glass wall that I did not know how to shatter. Before too long, I reveled in being “the freak” and began to think myself as ineffably special because of my unknown, unnamed difference.
Later, I tried to slap a label onto that mysterious, ineffable difference. Had I been bullied – and was I different – because I was “mixed”? In junior high and high school, I was the only multiracial student to my knowledge who refused to identify as only “Black” and I was one of the few I noticed who didn’t adhere to the “little groups [who] have always been and always will until the end”, as Kurt Cobain would put it – yes, ladies and gentlemen, the cliques and social groups – for I would literally talk to anyone, probably whether they wanted me to or not. But for most of my adult life, I concluded that being “mixed” was a giant neon sign affixed to my forehead that both Blacks and Whites could see – and that their conclusions and stereotypes stood between me and interpersonal human connection.
Although I didn’t see it, my logic was flawed. My reasoning may have been partially correct for those years I spent in that little steel mill town – but it was certainly not correct for those years I spent in the large southwestern metropolitan city in the middle of the desert or in the large Midwestern beer-and-cheese city in which I was born. And as my alienation continued into adulthood, and race began to dissolve out of the picture, I encountered other multiracial people that were far from alienated, and far from the “tragic half-breed” stereotype perpetuated by our culture throughout the last few centuries. So what was wrong with me?
Where Are All the Black Autistic People?
I was self-diagnosed in early 2010 and obtained an official diagnosis later that year. It was not until these events that I understood what was so different about me. My first “A-ha!” moment came when I read a former classmate’s note on Facebook about her own possible Asperger Syndrome – and realized that about two-thirds of the characteristics she listed fit me as well. So that’s why I’ve always felt different. This moment began a journey, which has become a slow unfolding of myself – with all those little things about me that I could not explain before — and an understanding of childhood events and behaviors through the lens of autism.
I began reaching out to the autism community online, which has welcomed me and helped me further understand myself. One question kept lingering: where are the Black people? Save for a few brave visible souls, I didn’t notice many of us flocking to be online and speak of our differences. And I’m not the only one who’s noticed – John Elder Robison blogged about the notable absence of Black Aspergians in the first of his posts on Psychology Today and then offers two possibilities for the absence in a follow-up post. Other have joined in this discussion – like Tales of a Clockwork Pastor and along the way, I have met a few more black autistic souls. Based on my interactions, I am concluding that many of us are here but simply invisible.
From the stories I have read and those who have reached out to me, many tell of their own efforts to fit in. DuBois might say that those of us with certain gifts and talents (academics, art, music, poetry, etc.) have the potential to become part of the “Talented Tenth” – those trained to become leaders within the African-Americans community. It’s not hard to imagine that some of this Talented Tenth might be autistic – Paul Robeson certainly comes to mind, as well as music producer Michael Buckholtz as a more modern example. Our autistic tendencies simply might be branded as eccentricities or perhaps we might make a more concerted effort to be normal – I know I tried to “pass” as normal, or neurotypical (before I even knew the term existed) as an light-skinned multiracial person in earlier eras may have tried to “pass” as white. And it’s not hard to imagine that black autistics as a whole, given the potential dangers and pitfalls of being Black and “different”, might try to “fit in” to avoid being stigmatized.
The Visibility of Black Autistics
So, what is a black autistic soul? I’m certain that there are as many different answers as there are black autistic people. I know my experience as first a multiracial person and then an African-American with Asperger’s has been defined by two things: 1) a sense of “moving” between parts of my identity or membership cultures and 2) a sense of these identities “intersecting”. Generally, I’ve observed that people who are not part of a “dominant culture” already moves between two or more cultures or worlds as part of his or her existence. Some of us have multiple lines of difference intersecting within the same person – ethnicity, disability, sexual orientation, religion, and so forth. And there are even subtle nuances (and obvious differences) between the uses of broad terms – for example, one might generally call me non-white and disabled – and specific terms: in my case, a different mental picture might be generated by the terms Black and autistic than by multiracial and Aspergian. Welcome to the world of labels, my friends.
Here I borrow again from DuBois’ first chapter of The Souls of Black Folk in which he speaks of a “double-consciousness” or, a “double self”, possessed by African-Americans at that time in history. He illustrates that this was the result of living in two different cultures – one Black, and one American. DuBois described this reality as “two warring ideals in one dark body, whose dogged strength alone keeps it from being torn asunder”. This is clearly a description of the intersection of two cultures—and it’s not hard for me to believe that other African-American autistics experience the existence of the “double-self”. How does it feel – and what do we experience – as we shift between these realities? What does it mean to be autistic in African-American culture? And what does it mean to be African-American within the autistic community?
These and other questions need to be answered. As autistic self-advocates continue to define the nature of autism within its public discussion, Black autistics need to join the discussion as much as possible. While I am sensitive to the unique problems of those who cannot be “out” as autistic, I firmly believe that there would be much benefit to more of us “coming out” of the closet. We need to step forward and define what our autistic reality is – or it will be defined for us, primarily in terms of our absence.
And this absence of African-American autistic voices presents a major problem: the noticeable lack of our voices in the public discussion of autism will continue to perpetuate the myth that autism is a “white” issue. The existence of this myth has several ramifications, which include the following:
1) Less of us will recognize that the possibility of being autistic even exists – which could mean anything from a lack of diagnoses to continued struggling in school to misunderstandings of autistic “quirks” which could spell social and legal trouble for Black autistics.
2) Professionals and service providers who buy into this myth will not recognize a Black autistic when they see one – and this can have several kinds of outcomes, including misdiagnosis (it would not be surprising to find Black autistics misdiagnosed as having ADHD, schizophrenia, or other conditions) or not providing accommodations, services, and specific care that some of us may need.
3) Lastly, while some of us are attempting to raise autism awareness within the African-American community, a lack of visibility will hinder attempts to raise not only awareness but to create understanding – which can result in some negative outcomes in how African-America autistics are perceived by other African-Americans. An example of this is the bullying of Black autistic children by other Black children: remember when I mentioned being told that I “talked white” earlier in this post? This was due to a tendency to use advanced vocabulary and “low incidence words” which made me the target of taunts and teasing in school.
In the first chapter of The Souls of Black Folk, DuBois proposed that the solution to the problem of the African-American “double-self” at that time was to merge this double-self into a “better and truer self”. DuBois goes on to say:
“In this merging he wishes neither of the older selves to be lost. He would not Africanize America, for America has too much to teach the world and Africa. He would not bleach his Negro soul in a flood of white Americanism, for he knows that Negro blood has a message for the world. He simply wishes to make it possible for a man to be both a Negro and an American, without being cursed and spit upon by his fellows, without having the doors of Opportunity closed roughly in his face.”
As we move between the realities of being African-American and autistic, we each need to decide what we do with them. Do we merge them, as DuBois suggests? Do we compartmentalize them? Do we find a way to achieve a healthy synthesis of the two that will promote greater understanding of autism in the Black community as well as of African-American autistics themselves?
I know that I am a Black autistic soul. I happen to be one which whips language and words around her tongue and slides them out through her pen. I happen to be one with a collection of my own narrow/special interests, talents, and philosophies. I happen to be one who is still healing from the effects of childhood bullying. But I know I am not the only one.
So come talk to me. Leave a comment in the box below, talk back to me on Facebook or Twitter, or email me (woman DOT with DOT aspergers AT gmail DOT com). Privacy and confidentiality will be respected. I just want to know that you’re here, too.