The Souls of Black Autistic Folk, Part III: Difference and the Question of Visibility

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.
We strange.
(from my poem, “1 in 88, Nicole Style”)

(Note: This is a continuation of the series”The Souls of Black Autistic Folk”. I encourage the reader to read the introduction, part 1, and part 2 of this series.)

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.

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The Souls of Black Autistic Folk, Part II: Paul Robeson, the Aspie?

I have done the state some service, and they know’t.
No more of that. I pray you, in your letters,
When you shall these unlucky deeds relate,
Speak of me as I am, nothing extenuate,
Nor set down aught in malice…
(From Shakespeare’s Othello, Act V, Scene 2, lines 339-343a)

Paul Robeson

 In part I of this series, I provided an overview of Paul Robeson’s life in order for readers to begin to understand who we was. Robeson was a multitalented individual – an academic star during his undergraduate studies at Rutgers, an actor of great renown, and a singer with a power, singular voice. Based on evidence presented by Norm Ledgin in the book Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models, I also believe that Robeson was autistic. I will present that evidence in this post.

 (Please note: Ledgin uses a summary of main points of the diagnostic criteria for Asperger Syndrome from the Diagnostic and Statistical Manual-IV. At times I will be referencing more specific criteria for Asperger Syndrome – 299.80 – as posted at the Centers for Disease Control’s website.)

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The Souls of Black Autistic Folk, Part I: An Introduction to Paul Robeson

And here is
Paul, the man made out of crossroads, seven or eight men
in one body. Call him Othello if you like. He is
voice-colored and fist-worn with Jim Crow’s black feathers
plastered to his knuckles. He has a sixteen track mind,
almost drowned by man-made lightning. He was a
serif font road sign: Poitier and Belafonte read him and
found their way to the stage. Here is Paul.
(an excerpt from my poem, “Tribe”)

I began this exploration of being African-American and autistic a few days ago by mentioning Paul Robeson, an individual where Black history and autism intersect. I had encountered the premise that Mr. Robeson had Asperger Syndrome in Norm Ledgin’s book Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models about two years ago and was immediately fascinated by it. While other African-American historical figures such as George Washington Carver and Benjamin Banneker are proposed to have been autistic, Robeson is the only African-American who to my knowledge has been analyzed for autistic traits using any sort of diagnostic criteria. And since my online journey began in late April 2010, I have noticed a distinct lack of the African-American presence in the online autism community. In an act of echolocation, I seek our presence to find, confirm, and perhaps reaffirm my own existence and reality as an African-American autistic. So Mr. Robeson, I have chosen you as my psychopomp for this journey.

Paul Robeson

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I Am Here, Where Are You? Blogging, Autism, and Phatic Communication

Last month, Leah Kelley of 30 Days of Autism reposted my poem “Code” on her blog as well as our online exchange. It is a very rewarding experience when we can reach out to each other. This is probably one of my favorite things about blogging is the ability for echolocation — or as Susan Brackney, author of the “Lost Soul Companion” puts it, phatic communication, giving an example of how birds tweet to each other. We autistics who blog begin by saying “I am here, where are you?” and that was certainly one of the reasons for which I started Woman With Aspegers.

What else do we have to say? Listen to our language.

Thank you Leah for reposting the poem, which appears here.

The Souls of Black Autistic Folk: A Prelude to the Journey

Last Friday was the beginning of Black History Month. Amidst what we will be hearing about it in February 2013 — which tends to be everything ranging from the celebration of African-American historical individuals and events to the usual question of why the shorter year of the month was chosen for this celebration — I will certainly be adding my own voice to the chorus of writers and bloggers.

In my case, I am fascinated with Paul Robeson — one individual where autism and Black history intersect. I first studied African-American history in high school through a (what was considered groundbreaking) semester-long class and found myself introduced to history I had never encountered before. It is where I was introduced to the Harlem Renaissance. It was where I began to explore poetry and where my love of the craft began to take wings through learning about Langston Hughes, Paul Lawrence Dunbar, and Maya Angelou. And I recall a brief mention of Paul Robeson — giant of stage and song and inspiration to the likes of Sidney Poitier and Harry Belafonte. Robeson, best known for his portrayal in the title role of Shakespeare’s Othello, is proposed to have been an Aspie by author Norm Ledgin in his book Asperger’s and Self-Esteem: Insight and and Hope Through Famous Role Models. Ledgin compares some of Robeson’s behavior with the diagnostic criteria in the soon-to-be-superseded DSM-IV and concludes that Robeson fits the criteria for an Asperger diagnosis.

This month, I’m going to explore Robeson — who he was an an artist and a person, and through the lens of Asperger’s. Robeson was born in 1898 and died shortly before I was born (January 1976). I wonder — and would like to explore — about the reality he encountered as an African-American autistic in the early part of the twentieth century, and how that reality compares to the reality I encounter today as a multiracial African-American autistic.

And of course, this exploration will lead me to related questions. I know I am not the only African-American autistic out there. In my journeys over the last three years I have encountered some wonderful individuals, including record producer and autism advocate Michael Buckholtz. Logic dictates that he, I, and the few other individuals I have met cannot possibly be the only African-American Aspies out there. The big question in this case is: where ARE we? Through a bit of exploration, I hopefully may find some general answers (while being careful to respect the privacy of those who cannot be “out”) this month.

I hope you’ll join me on this fascinating journey this month. Hold on tight. It might be one heckuva ride.

-Nicole

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In this series:

Who Are We? Women, Autism, and Social Mimicry, Part II

Some of you may remember the Women, Autism, and Social Mimicry survey that I conducted back in November of 2011. As I mentioned earlier, I was aware of my own use of “scripts” for social interaction and was intrigued about the phenomenon of social mimicry among autistic women. This survey was meant to “take a pulse” or to get a sense of how common this might be.

I posted part I of the results of this survey in December of 2011. Due to personal issues in my life, I have been unable to devote the amount of time I have desired to the WWA blog until recently. Now I have been able to post part II of the survey results (questions 5, 6, and 7), which deal with the amount of difficulty with social interactions that the respondents experiences and whose social behaviours they mimicked. Questions 8, 9, and 10, which concern the reasons why respondents mimicked social behavior, bullying as a motivating factor, and continued mimicking, will be posted in part III. (Note: I initially intended to post this in two parts, but opted to post in three to aid in ease of reading.)

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Q5. Amount of Social Difficulty Experienced as Children/Teenagers

Women who took the survey were asked about the amount of social difficulty they experienced growing up — examples of social difficulty cited in the question included difficulty in making friends, playing with others, understanding social cues/facial expressions/tone of voice, and decoding unwritten social “rules” in their families or peer groups.

Most of the women who took the survey reported that they experienced either a moderate amount (33.49%) or a great amount (55.5%) of social difficulty as children and teenagers. This is nearly 89% of the respondents — and it’s not surprising, considering difficulty with social interaction is one of the most difficult and painful aspects of Asperger’s or other autism spectrum conditions.

3.83% of respondents reported that they were not interested in social interactions with others as children and/or teenagers. 2.39% reported experiencing a minimal amount of social difficulty, and .48% reported no social difficulty at all.

I received a variety of interesting responses by those who chose the “other” option (4.31%). A few of these stood out at me:

  • “Depended on situation: severe problems with family and random strangers, only moderate problems with self-selected peer group.”
  • “I had a core group of nerdy friends in school who accepted me as quirky. It was after graduating that I found it close to impossible to initiate or maintain any sort of social life.”
  • “Great amount of difficulty when I tried, much of my life I wasn’t interested in even trying.”

I found the first response very interesting because it was true for me at various times in my childhood and teen years. It was mostly true between ages twelve to eighteen and I attribute the major reason for my social difficulty with family members to the dysfunctional nature of the family in which I grew up. I’ve found that dysfunctional families can be the worst in regards to enforcing conformity to “status quo” — I believe that this tendency belies an attempt to hide the dysfunction from outsiders and thus any behavior construed to be even remotely weird, quirky, or out of the norm is regarded with suspicion or actively discouraged. While no exact data is available on the number of autistics who might have grown up in a dysfunctional family system, I imagine that it would be easy (albeit ethically and morally wrong) for other family members to cast them into the “scapegoat” role due to the perceived odd behavior and other challenges that come with autism spectrum conditions.

Q6. Frequency of Mimicking the Social Behavior of Others

Survey respondents were asked how often and how much they mimicked the social behavior of others as a child and/or teenager. Most autistic women in the survey reported a moderate amount of social mimicking (40.67%) and 32.54% reported a great amount of social mimicking. Some respondents reported a minimal amount of mimicking (12.44%), while 7.18% said that they were not interested in mimicking the social behavior of others. Less than 1% of respondents (.96%) reported that they did not mimic others’ social behavior at all.

6.22% of respondents chose the “Other” option and provided some interesting answers when asked to write in:

  • “This, of course, was different from my mid teens when my autism developed into Asperger’s Syndrome. From age 22, I was made aware of the importance of making (or faking) eye contact, faking certain body language, etc. – as an adult, I mimic much more.”
  • “I mimicked to a very small degree as necessary, but I was not interested in doing so. Only did because it was necessary.”
  • “I didn’t realize I was doing this until recently, when I look back.”
  • “I didn’t even realize that there WAS any social behavior that I could have mimicked.”
  • “I did not seem to pick up behavior ‘in person’ well at all. I did learn some mannerisms from fictional characters in books.”
  • “Again I was too socially aloof to even know there was a requirement or that I was not like everyone else.”
  •  “100%, that’s all I did. Every action was a concerted effort at pretending to be the people around me.”
  • “I didn’t start mimicking until I was in my mid twenties.”
  • “Just observed as a young child; began to try out hypotheses about how to act at about age 6; have continued that approach lifelong. Do, observe results, modify or not.”

The results to Q6 indicate that a large percentage of survey respondents moderately or greatly mimicked the social behavior of others as children and teenagers. One might look at the amount of social mimicry as a continuum, with more of respondents skewing towards frequent mimicking.I’m being careful not to draw larger conclusions, but I find it this result very interesting. Might the large percentage of social mimicking, if translated into the same results for the larger population of autistic women, be one of the reasons many of us missed diagnosis? Dr. Tony Attwood seems to think so, but I think this question should be explored further.

A personal note: If I had answered this survey, I would have probably reported a minimal amount of mimicking — I didn’t really start doing this until I was 18 years old and at college, which is similar to a couple of the “other” respondents above. In my case, I was sick of being alone and ostracized as I had been throughout high school and thought that the way to end my loneliness and to gain friends was to become more extroverted, as I’d seen from some of my classmates in high school. I thought that once I was way from home, that gave me license to act in any way I wished. Unfortunately, I began to reject my introverted nature and developed a lot of behaviors that aren’t natively my own, which I am still trying to unlearn now.

Q7. Who Did Respondents Tend to Mimic?

(For this question, respondents were asked to select all applicable answers and were allowed to select more than one to answer this question. Totals may add up to more than 100%.)                                                                  

Judging from the responses, those autistic females who mimicked the social behavior of other people chose a variety of models. (5.38 % of respondents to this question said that they did not mimic the social behavior of others.)

A large number of respondents (52.98% collectively) reported mimicking the behavior of classmates, playmates, and friends. 25.78% used the behaviors of both male and female classmates/playmates/friends as their models, 22.95% chose to mimic the behavior of other female classmates/playmates/friends, and 4.25 % chose to mimic male classmates/playmates/friends.

Altogether, 32.58% of respondents reported mimicking the behavior of family members. 16.15% said that they chose both male and female family members to mimic, 10.48% said that they chose female family members, and 5.95% reported mimicking male family members.

Breaking down by gender, 41.93% imitated the behavior of people from both genders (family members, friends, classmates, and playmates) while 33.48% imitated females and 10.2% imitated males.

9.07% of respondents chose the “other” option and gave a variety of explanations. Many of them reported imitating fictional characters from books, television shows, and movies. Some reported imitating teachers, authority figures, and other trusted adults. Others spoke of imitating celebrities and other famous individuals. I can relate to all of this because growing up, I did occasionally imitate classmates – however, I imitated fictional characters and celebrities more often. For example, I was a big fan of the television show “Punky Brewster” and when I was around ten or eleven, I began to imitate Punky, down to the way she dressed. Among other models I chose were both Pipi Longstocking, Denise and Vanessa Huxtable from The Cosby Show and Michael Stipe, the lead vocalist of R.E.M.

A few interesting responses regarding gender manifested themselves in explanations of those who selected “other”. Some reported identifying with males more or exhibiting what is generally considered male behavior. One woman had this to say:

 “As an adult with Asperger’s Syndrome and having only the occasional companion through my life who always tend to be male, I mimic male behavior and really struggle to learn femininity or how to identify myself as ‘female’.”

 Of course, statements like these raise more questions. I’m a strong supporter of being oneself and not conforming to behaviors expected for one’s gender if those behaviors are not naturally native to oneself. I believe that part of the problem autistic women encounter (and which I have encountered myself) is that we are confronted with gender norms and roles of which we may be unaware of or with which we cannot or do not wish to conform. I know I have found it difficult to find my own identity as a woman for these reasons. I find this particular issue intriguing and will be dealing more with it on this blog later.

Congratulations, Miss Montana 2012!

Miss Alexis Wineman, Miss Montana 2012

Miss Alexis Wineman (Image Courtesy of What’s On Tianjin)

I normally don’t pay attention to the Miss America pageant, but this morning during breakfast I happened to see a broadcast about Ms. Alexis Wineman, who is Miss Montana and is the first autistic contestant in the pageant. Miss Wineman was diagnosed with PDD-NOS and mild Asperger Syndrome at age 11 and plans to use this pageant opportunity to raise awareness and understanding about autism.

WWA offers congratulations to Miss Wineman and best wishes for this year’s pageant, which airs on Saturday, January 12 on ABC at 9:00 P.M.

To read more about Miss Wineman, check out this Huffington Post article and this International Business Times article. She is also on Twitter.

To Be Seen, or Not to Be Seen?

To be seen, or not to be seen?

I have spent a good percentage of my 36 years of life trying to figure out the answer to this particular question, which has expressed itself as a tug-of-war dialectic in my heart, mind, and soul. And the truth is, some days, I cannot decide which it is that I desire.

I was reminded of this struggle of my own upon reading this post on The Third Glance blog. The author speaks her own childhood growing up with autism and I found some of her account mirroring my own. I’ve quoted some of her post below to illustrate what I mean:

“She knew that if she complained, the consequences would be even scarier at home. When she first told her parents she wasn’t fitting in, she would get ‘talked to’, told she needed to try harder, that she needed to stop using big words, that she was obviously deficient. When that didn’t work, the responses got scarier, so she stopped saying anything…She learned that repeating the big words she heard in books would cause the other students to laugh at her and tease. She learned that no one else cared what happened in her books, or what she had just learned about her favorite things.”

I was reminded of my own childhood and my own struggles. Years before I knew that I was autistic, I knew that I was different. While I’ve said this before, I say it again now because there are people wandering around, like I was, without answers. There are children, teenagers, and adults who struggle with the decision between conformity and difference every day. Some, like the author of Third Glance and me at various points in my own life, choose to become invisible:

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The Connecticut School Shooting, Autism, and a Breaking Glass Heart

When I first heard on Friday about the school shooting in Newtown, Connecticut, I had no words in me at all. It was like someone had just punched me in the gut and I could only think about the senselessness of this violent act and how the victims of the families must feel. After I stopped crying, one of my first acts was to write this poem, “Candles“. If I can’t speak, I might write. Having few to no candles in the house but a few words bouncing around inside me, this was the best I could do to remember the victims.

Over the weekend, my fiance and I happened upon a video by a prominent YouTube personality about the shooting. He expressed, of course, his grief and anger but then later in the video suggested something I would call “lunatic profiling”. I found myself saying, “No, no, no! That is not the way to solve the problem!” I also felt that if such a suggestion were taken seriously, it could lead to people deemed “odd” or “eccentric” or even autistic people being targeted. And I said so in a video I posted on YouTube in which I read the poem.

This morning, I check the news and find speculation that the shooter had Asperger Syndrome. Oh boy. Where do I even begin?

First, I must say that while the effort has been a nearly Herculean battle within myself, I am trying to think more positively these days. However, it is very hard not to be concerned when I see the words “autism” and “mass murder” in the same headlines. So far, the worst I’ve encountered when self-disclosing about my Asperger’s has been gentle and curious ignorance and mostly, it has taken the form of comments such as “you look so normal” and “you seem to be handling it well”. I think many of us would prefer acceptance and understanding or even gentle and curious ignorance to fear-based, dangerous associations between autism and evil or autism and violence. This is why I couldn’t ignore the headlines.

I recognize that in the grief and shock that many people feel after such an event, they want answers. But they need to be the right answers. And any solutions being considered to rectify the problem of mass shootings and gun violence need to be tempered not only with rational and clear thinking, but with the preservation of civil liberties and the avoidance of unfairly stigmatizing an entire group of people based on myths, misunderstanding, and prejudice. I am deeply concerned that without the voice of autistics and with fear-mongering and lack of understanding of autistic people, assumptions will be made that we are a bunch of violent, unfeeling psychopaths when nothing could be further from the truth.

Many autistics are already speaking out about these issues. Rachel Cohen-Rottenberg has already aided to dispel the myth that we lack empathy with her website, AutismandEmpathy.com. Other autistics have written very articulate and well-thought posts to contribute to the discussion of where (if at all) autism fits in with this shooting and John Elder Robison has contributed his own thoughts as well. I won’t add much more to the discussion except for a few things:

  1. I must stress, as others already have done, that our particular condition involves difficulties with communication, sensory processing, and other neurological issues — not empathy or feeling. I know I have difficulty sometimes identifying my emotions and expressing them, and sometimes I do feel overwhelmed. I find myself angry, sometimes, like the next person and managing these emotions can be a challenge. However, this is not automatically a recipe for violence. Also, some of the hallmarks of Asperger’s, such as difficulty with social connections or the so-called “flat affect” are externals and to judge our capacity for feeling or empathy by these is a serious mistake. For example: though I am female, my lack of tears has more to do with my preference or even comfort level with expressing emotions in public. I prefer to cry behind closed doors, in front of my fiance, because I feel so vulnerable if it happens in front of strangers.
  2. Most of us have better things to do than to kill other living creatures, human or otherwise, and would never dream of inflicting this kind of harm. As for me, I’m too busy writing, or trying to do my best work at my day job, or trying to create, or have fun, or manage communication, or stop being apprehensive in social situations, or maintain a healthy relationship with my fiance, or ponder the nature of God, or…or…well, I think you get the point.
  3. Many of us in the autism community are saddened and grieve for the lives lost in tragedies such as this. My own glass heart is breaking for those who died and for their families. I wish for such a day when, as the Old Testament writer and prophet Isaiah put it, the “wolf…shall dwell with the lamb, and the leopard shall lie down with the kid; and the calf and the young lion and the fatling together” or as he writes earlier in the same book, when the human race “shall beat their swords into plowshares, and their spears into pruning hooks: nation shall not lift up sword against nation, neither shall they learn war any more.”

It is my sincere hope that everyone affected by the shooting find comfort, and that we pursue solutions to the problem with clear and rational thinking. I also pray that there is greater understanding of autism spectrum conditions and that opportunities for education arise rather than assumptions, prejudice, and fear of autistic people.

-Nicole

Aspie Poem: Code

Dear H: for those of us to whom words
sometimes do not easily run, saunter, or even
amble: we speak in code. We think in code. We
construct our languages painstakingly
like little Tolkiens, separated by time, distance, and space:
but the Hobbits and the Elves ain’t got
nothing on us. We have the dexterity
of pictures, objects, or even
moving film to send messages to world,

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