Behind the Interview: Thoughts on Autism and Communication

Our languages are not mistakes,
or broken syllables, or to be dismissed as mere
unintelligible nonsense. They simply need our translations
to be understood.
— “Code”

I was invited by Emma Kingsley of BBC Radio 3 to be part of an episode of “Between the Ears” called “How Was Your Day, Joe?”. In mid-May, she interviewed me at WCBE Radio in Columbus, Ohio through a high-speed connection from England. Kingsley asked me questions about communication and autism and asked me to read a few of my poems. This program aired on June 7 on BBC Radio 3: you can listen to the archived show here. I was honored to be a part of this program and to be given an opportunity to share my experiences and art to help people better understand autism.

Specifically, Kingsley centered the program around a question which she asked Joe every day but with which he found frustration – “how was your day, Joe?”. Kingsley asked autistic people to provide insight on why answering the question would be so difficult for Joe. She also interviewed clinical psychologist Andrew McDonnell, speech therapist Robert Bell, Simon Baron-Cohen (Director of the Autism Research Centre at Cambridge University), and Delia Barton, Michael’s mother. Excerpts of two of my poems, “Glass and Concrete” and “Code“, were played during the broadcast.

Communication about Communication

In preparation for this interview, Kingsley sent me a general list of questions about communication and my own experiences. The questions forced me to think about a lot of things – how I process my episodic memories, how I communicate my experiences to others, and even my own childhood and teenage years.

First, let me speak about how I process and communicate my experiences. I have said before that my mind works rather visually. Borrowing from Dr. Temple Grandin’s explanation of autistic types of thinking, I have determined that I’m mostly a visual thinker with some verbal logic thinking as well – this is how I compose my poetry, translating the images and moving film in my head into words. So when I think of my memories, I must first rewind, replay, and even freeze-frame and focus on the details I desire in order to speak about them. After that, I must find the words to reflect what I perceive with my senses and feel with my whole self.

Secondly, Kingsley’s questions about my childhood forced me to realize one horrific truth. I have little to no memory of anyone asking about my day when I was younger, and certainly no memory of this after about age thirteen…because as a teenager, no one asked me about my day. If you had asked me back then how I felt about this, I might have actually told you that it was a good thing no one asked. I would have seen it as avoiding further verbal and physical abuse through exposing myself emotionally and then being cut down with insults or hit by my aunt because of her disapproval over something I did, or ridicule by one of my cousins.

However, I realized before and during the interview that the fact that no one asked me about my day…was a bad thing. It confirms my worst feelings about those years of my life – that no one paid attention to me except to abuse me, to give me subtle and not-so-subtle messages that I was a burden…because I wouldn’t be normal, because I had needs, because I was confused about the world and made a lot of social and other kinds of faux pas, because they were afraid that my behavior would call too much attention to the lie and dysfunction that was my family of origin.

Untangling myself and communicating these yarns have sometimes been rather difficult for me because of these horrific years. I curled up inside myself and pulled a clam shell of safety around me. That clam shell was made of books, poems, stories, fantasies, dreams, and sometimes hopes, both strong and brittle. Although my silence was not as complete and total as what the late Dr. Maya Angelou experienced as a child following traumatic sexual abuse, it was none the less silence. Perhaps that is why, as I accounted when Kingsley asked me about communication and meltdowns, I often felt like I would explode. I probably had enough canon fodder in my heart for a hundred wars.

Make no mistake – silence does not necessarily mean a lack of speech. Dr. Angelou proved that this was true. Nonverbal autistics communicating through alternate means – such as Amy Sequenzia, Tito Mukhopadhyay, and Amanda Baggs – also prove that this was true. What I mean by silence here is a confining, soul-deadening prison in which all you hear is the empty echoes of your own breath. I have been there. The late Johnny Cash might call this place a chasm “between heaven and hell…[and] in that chasm is no place for any man”.

My own experiences, as well as the experiences of other autistics, underscore the human need for communication. When we chose the silence for healthy reasons, it is because we need it. But when we chose it to avoid pain and abuse…or when silence is forced upon us at our detriment to serve others’ selfish interests…or when no one asks us to communicate because they assume we do not or cannot…this is were the problems lie.

I am grateful that I can reach out, that I mostly feel safe in doing do, and that (thanks be to God) poetry has become a tongue I borrow to better speak or when my own fails. My willingness to communicate and to reach out more broadly is also partially thanks to my fiancé, who has been constantly supporting and encouraging me since we met fourteen years ago. I am grateful for other autistics speaking, blogging, and writing as well. I am also glad that explorations into autistic communication such as this radio program are taking place, but much more needs to be done.

I Was a Little Worried…and Still Am

I must admit that before my fiancé and I listened to the broadcast on Saturday, I felt a bit of trepidation knowing that Simon Baron-Cohen had contributed to the program. I tend to feel trepidation when those who are deemed experts on autism speak about it, because sometimes they get it all wrong. And that “getting it wrong” leads to conclusions which are not only errors of fact but dangerous in that they continue to promote misunderstanding and prejudice about autism and autistic people.

However, upon first listen I found the program was balanced in its look at autism and communication. I was also pleased at the fact that autistic people were asked for their thoughts, feelings, experiences, and insight – I was interviewed along with Wendy Lawson, Michael Barton, and Kingsley’s 13 year-old son Joe, who was the genesis of this episode’s theme. We observed that Kingsley was genuinely on a detective mission of sorts — to find out why Joe had such difficulty communicating about his day, and to explore issues with communication and autism in general. She concluded that perhaps the question — “how was your day, Joe?” — was itself part of the problem.

While I did not at first glance detect any glaringly obvious problems with what he said during his part of the broadcast, I still remain cautious regarding Dr. Baron-Cohen and his research, considering that his material includes conclusions such as lack of empathy on our part and the “extreme male-wired brain” idea of autism. Following the axiom of “nothing about us without us”, many of us will continue to aim a logical and critical eye at such research and counteract misinformation, fallacies, and lies contained therein.

The Next Steps

My own experiences as an autistic communicating, as well as a need to understand how these processes work inside us, are reasons why I believe that more research and dialogue needs to happen regarding autistic thinking and processing. Autistic people are the perfect individuals with which to start. Many of us have already begun to analyze our communication and thinking processes and share our experiences with the world at large. Some positive things have already resulted from this broadcast — for example, an open dialogue with my coworkers about autism.

However, science and researchers need to take our experiences and input seriously. Because of misinformation, pathologization of neurological differences, and flat-out prejudice towards autistic folk, some of us do not trust the medical, psychological, and scientific communities. Additionally, organizations such as Autism Speaks only continue to make things worse. To the medical, psychological, and scientific communications I call for a logical, even-minded approach to researching autism and a greater commitment to involving autistics by genuinely listening to our experiences and opinions. And to Autism Speaks and to the celebrity opportunists (yes, Ms. Jenny McCarthy, I mean YOU) who use autism to further your agendas, I call for an end to your propaganda, lies, and disregard for autistic involvement in how you define and speak about our unique neurology.

I and my fiancé speak about our autism openly (although I am the louder mouth of the two) and choose activism through art — with our own art and by promoting neurodiverse literature through our journal, Barking Sycamores. And we will not give up. I suspect if you are autistic and reading this, you won’t give up either. To allistic friends and allies, thank you for not giving up as well. And to Ms. Kingsley and BBC Radio 3, I offer my sincere thanks for giving me and the other autistics in the program an opportunity to share about how we communicate and process.

To allistic folk who are new to autism, I say to you these things:

Forget what you have heard from the media about autism.
Forget what you have heard from Autism Speaks.
Forget what you have heard about autism being a tragedy or a sentence to a miserable life.
Forget what you have been told about autism by celebrities pushing their cause du jour.
Forget the tenuous and invalid connections which have been made between autism and things such as psychopathy, a lack of empathy, widespread savant abilities, and gun violence.
Open your minds.

And finally, talk to an autistic. I’m here. And a lot of us are out here. We’re willing to listen. Are you?

-Nicole

P.S. Please stay tuned for a special announcement about the Woman With Asperger’s blog in the upcoming days.

Today is Autistics Speaking Day.

Today is Autistics Speaking Day. Folks have plenty of things to say. I’ve submitted my post from October — “Isolation, Loneliness, and the Angry Aspie” for ASD. Go over to the FB page to read/submit your experiences: https://www.facebook.com/AutisticsSpeakingDay

UPDATE: I also did write a poem for ASDay. I’ve been writing poems about Helen R. Jones, a black woman born in the early 1940’s who is likely autistic (but undiagnosed). She struggles socially, is more interested in books than in fashion, and can never meet up to the expectations of her mother, who is a socialite wannabe (on a steel mill worker’s salary, no less) in the Black community of Steelville, Ohio, where Helen is born and lives out her life. Helen’s mother pressured her to suppress her flapping habit as a little girl. Helen/Aanteekwa is a fictional construct, but I think speaking about her today gives a voice to what many of us went through as teenagers…that is, feeling as an outsider. Here’s the poem, “a bright light jolted Aanteekwa awake“.

 

 

Listen to my Appearance on “The Poetic Travels on the Autism Highway” Radio Show

If you missed this past Saturday’s episode of the Poetic Travels on the Autism Hwy radio show where I was a guest, have no fear! The show, hosted by Kelly Green and Erik Estabrook, is available as an archived broadcast for your listening pleasure. We spoke about autism, poetry, creativity, activism, and a host of other topics (yes, even the J. Cole incident). You can visit their show on Blog Talk Radio and listen at:

http://www.blogtalkradio.com/erikevision/2013/07/27/poetic-travels-on-the-autism-highway

I had a great time talking with the hosts and sharing my poetry, which included three selections from Novena (remixed): “Icarus”, “Meridians”, and “You Don’t See It”. I also read “Tribe”, which appeared in We’ve Been Here All Along: Autistic Over 35 Speak Out in Poetry and Prose. And don’t forget: Novena (remixed) is available August 14! More information about the new book is at my other blog, Raven’s Wing Poetry.

-Nicole

J. Cole’s Lyrics Prove that More Understanding of Autism is Needed in the Black Community

There’s nothing like the smell of insults in the morning. I checked my Twitter feed and found this little gem:

I did some investigating about the lyrics which @AutisticPoet had referenced and found that they come from Drake’s song “Jodeci Freestyle”. In the last few days, J. Cole has certainly gotten the wrong kind of attention for these lyrics. There are many, myself included, who are upset at him because he chose to use the word “autistic” as an insult. “Autistic” by itself is merely a descriptive word that describes a person on the autism spectrum, or a person with autistic traits – unfortunately, the way in which J. Cole and others use the word can change its connotation to being negative, demeaning, and potentially dehumanizing.

Some in the autistic community are already taking action about this. Anna Kennedy and the Anti-Bullying Alliance have started a petition asking for an apology from J. Cole and Drake for the offensive lyrics. But I think this particular incident is indicative of a larger issue: the severe need for autism understanding and acceptance in the Black community.

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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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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.