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.

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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Finding One’s Voice: Art, Autism, and Communication

…we
dip into this thing that we cannot
name except for the words
flowing from our pens and tongues.
– From my poem, “Samadhi”

So much of the dialog about autism focuses about how we as autistics cannot and do not communicate. I’ve noticed that the emphasis seems to be on our capability (or lack of) to communicate with speech, and I sense an underlying assumption that limits human communication to the realm of speech. Besides the distinction of high-functioning versus low-functioning (which I think are somewhat limiting concepts), verbal versus non-verbal serves as yet another division line between autistics. I feel that the emphasis on verbal communication in autistic people promotes a severely limited idea of how autistic people can and do communicate which does not allow for alternate methods.Loose Lips

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Why Communication Shutdown Day Is a Bad Idea (And What You Can Do Instead)

listen carefully – this is Asperger’s talking
speaking in tongues ain’t easy
but I do not regret the wings that God gave me
just give me my damn feathers
and I will keep on singing

(from my poem, “Speaking in Tongues”)

I happened to come across this post over on the No Stereotypes Here blog in which the author, Corina Becker, discusses Communication Shutdown Day, an international effort scheduled for November 1 which attempts to raise money for participating autism-related charities.

The idea behind Communication Shutdown Day this year is to refrain from using social networks (such as Twitter and Facebook) that day. It is, in the words of one supporter, supposed to “mirror autistic silence” and “draw attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others”. In short, it is supposed to create empathy for those on the spectrum as well as raise charity money.

And I think it’s a bad idea.

Hold on a minute, Nicole, you might be saying. This is helping raise awareness for autism. So what’s the problem?

Well, for one thing, it could reinforce an existing idea that autistics cannot communicate – and if you’ve been reading this blog, you know of at least one autistic person who can. I am not denying that we do have our communication difficulties, and that many individuals on the autism spectrum are non-verbal. HOWEVER, reinforcing the concept of our silence is just a bad idea and doesn’t really do much for us as autistic individuals. While this event claims to help create empathy for us, I can’t help but wonder how much of that is going to end up becoming pity instead.

And the last thing our community needs is more pity. Pity for us is based on the idea of “oh, poor things, they live such miserable lives – they need a cure”. Pity detracts from the real issues that confront us day by day, which include: equal treatment, opportunity, and access to needed services and accommodations in educational institutions and the workplace; dealing with the social landscape of whatever cultures we are in; encountering and finding solutions to problems unique to our population, such as sensory overload, emotional expression, and low frustration tolerance; building and maintaining a healthy self-esteem; ensuring that we are treated with care and respect by medical and mental health professionals; and navigating an uncertain world with a brain and nervous system that craves predictability. Pity also detracts from our strengths, such as: persistence and focus; unique thinking patterns and methods; honesty; narrow interests which can lead to expertise in a subject; and the potential for creative, scientific, and other forms of positive contribution to society.

Becker has proposed an alternative: Autistics Speaking Day. Instead of remaining silent and refraining from usage of the Internet and social networks, she proposes that we on the autism spectrum speak out. As she puts in in this post:

…on November 1st, Autistic people should speak up and be heard. That in the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences.

And once I read about the idea, I found myself in natural agreement. So to help spread the word and promote Autistics Speaking Day, I will be tweeting about it, posting about it on Facebook, and other places. I also encourage those who agree with this idea and/or plan to participate on November 1 to SPREAD THE WORD. Tweet, blog, share on FB, etc. the HELL out of this mofo. Let OUR voices be heard that day. I’ll be tweeting that day and writing at least one poem as part of this effort.

If you do participate, please read her suggestions here (e.g. being mindful of subject matter that could trigger people and so forth). And SPREAD THE WORD! Thank you.

-Nicole