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.

#LoveNotFear Flashblog Event Today

Greetings, WWA readers!

Today is the #LoveNotFear flashblog event in which autistics, family, friends, and allies are invited to share their thoughts on what the statement “love not fear” means to each of us. The event is a creation of the Boycott Autism Speaks movement. I’ve chosen to participate to help indeed spread love, and not fear, and thus help promote a greater and better understanding of autism.

I’m sharing a poem for this event, “The Sky Belongs to All of Us”, which is up at my Raven’s Wing Poetry blog and the #LoveNotFear blog will also be publishing many fine write-ups by autistics and their allies today on this theme.

Speaking of which…for a very long time, I have felt that my best way of self-advocating as well as promoting understanding, not to mention the very act of activism in and of itself, is through my art. I am a poet — I speak best in verse. Some of you may have noticed that I have not posted very much here at Woman With Asperger’s for a while. My art is taking over my life, and in a way that’s a good thing.

I will be making a public announcement in more details about my plans for Woman With Asperger’s in the next few weeks. Until then, enjoy the articles and things that are here, and please keep commenting! I will try my best to respond soon.

-Nicole

Speaking in Tongues (This Is Autism)

Today is the “This Is Autism” flash blog event, and the moderators of the official TIA flash blog (http://thisisautismflashblog.blogspot.ca/) have invited people to share what autism means to them. This is my contribution. Pop on over to Raven’s Wing Poetry to read it.

Raven's Wing Poetry

Hello there! If you’re looking for this poem, it has been published in Red Wolf Journal.

Click here to read it.

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Listen (An Open Letter to Autism Speaks)

Autism Speaks has decided to hijack Washington and present its own agenda about autism. Time and time again, they have not included autistic people in their leadership, promoted “cause and cure” thinking about autism, has not represented the interests of autistic people, and continually paints autism as a tragedy. I speak best in verse, so please consider jumping over to Raven’s Wing Poetry and reading my open letter (poem) to Autism Speaks. Oh yeah — and please share. 🙂

-Nicole

Raven's Wing Poetry

after Michael Stipe

Listen: I have a voice. It is my own.
I did not install you as a little charm box
to hang in the back of my throat
and chime discordant when I send
wind from my sails up to the world

to produce sound – nor did
I rip a little patch of my soul from
the cathedral of strings inside my neck
and give it to you to own and
sound as you please.

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On July 27, I’m a Guest on the Poetic Travels on the Autism Hwy Radio Show

Autism HwyOn July 27, I will be a guest on the Poetic Travels on the Autism Hwy radio show, hosted on Blog Talk Radio by Kelly Green and Erik Estabrook. I will be discussing my poetry, how autism relates to my work, and performing some of my poems (including three from my upcoming chapbook, Novena (remixed)).

The show is scheduled for 4:00 PM Eastern/1:00 PM Pacific Time. The link below will take you directly to the broadcast:

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

I am honored to be a guest on their brand new show, of which this is the second broadcast. Tune in on July 27! You won’t want to miss it.

-Nicole

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

Continue reading

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,

Continue reading

We’ve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose

Two of my poems, “You Don’t See It” and “Tribe”, were published in We’ve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose. The anthology, edited and published earlier this fall by Rachel Cohen-Rottenberg (also the creator and webmaster of Autism and Empathy), features writings by twenty-two autistics speaking about, as Rachel put it in the description on her website, “issues as growing up without a diagnosis and coming to understand themselves in adulthood through the lens of autism”.

“You Don’t See It” is probably my best statement about what having Asperger Syndrome is like. “Tribe” (unpublished until this anthology) is a statement of pride, a recognition of how autistics throughout history have shaped and colored our world. And I am the frizzy-haired little girl on the upper right corner of the cover.

I am 36 years old and on the younger end of the age group in which the contributors are, but I share some things in common with some of the other contributors: late in life diagnosis. When I was growing up, the conventional wisdom was mostly that girls weren’t autistic and autism wasn’t that well-known…so the “gifted and weird” or “difficult” labels were slapped on me. Couple that with Asperger Syndrome not being an official diagnosis until 1994, the year I graduated high school. I went undiagnosed until age 34.

I have not had a chance to read except a small portion of the book, but from what I have read you will find intelligent, beautiful, eloquent, glaringly truthful, and sometimes painful writing, all from autistic writers. I strongly recommend reading the anthology and what we have to say about autism…from the perspective of the autistics themselves.

-Nicole

Two Poems Published in the All Said & Done Anthology

Hello WWA Readers:

Two of my poems, “Pretending to Be Normal (Eye Contact)” and “High School Jungle” were published in the anthology All Said & Done, a collection of light verse with some thought provoking pieces. The collection is published by The Amorphous Poetry Project.

A good percentage of the collection deals with relationships, communication, and empathy and feature some poets who are on the autism spectrum, including Donna Williams, Dave Spicer, and Wendy Lawson. Rick Lupert of Poetry Super Highway also has two poems in the collection.

All Said & Done is available in both print and electronic format. Proceeds from purchases of the book go to support the National Autistic Society of the United Kingdom.

-Nicole

Poem: Glass and Concrete (For World Autism Awareness Day)

I place my hands on the glass wall,
pushing against one more boundary
between me and the world, as if my bare hands
could make the wall more solid, less breakable: and when
I lift them up, I see the remains of one language
I speak, an entire matrix of lines, swirls, and whorls
dictated by DNA, stamped onto the glass
in oil and sweat. The handprints won’t tell you

about the endless rooms in my attic brain full of
my memories in Super 8 film rolls coiled up and sleeping
which have been magically appearing since I was a year old;

or the rooms of computer hard drives storing facts, numbers,
and encyclopedia notes numbering somewhere in the octillions;

or the glass-shatter heart that sometimes fractures if I breathe,
or suck in air from the shock or suspended surprise
of someone else’s pain, or when one of my own free-floating
pieces of celluloid with razor blade edges slices my fingers
when I yank it out of my film projector and try
to stuff it back into the canister it escaped from. The handprints

won’t tell you that our family’s collective lips are sealed
about our green strangeness, the unuttered word
that I alone out of the clan speak: autism. The handprints

won’t tell you that I shut my eyes and imagine
the lost, the mute, and the gaunt lit with pain
and pulling razor blades out of their throats
appearing as time-delimited half-tones behind this wall:
Tommy the pinball wizard;
my grandmother made of cedar beams, Indian blood, and elocution;
and a lizard poet, white knuckled, hanging on
to a rollercoaster of pain for dear life,
just to name a few. But the handprints will tell you
that I am human.

I wonder if you can see them: sometimes, I know
that on your side, you only see graffiti-infested concrete,
slapped and glued with headlines about
how our hearts are hollow, how we live as alien mutants
among you in a universe of uncertainty, and how
the word “never” seems to creep into your speech about
us. And you wonder why I erect a glass wall? Some days,
I am forced to pour concrete and hide behind
the wall of cold cinnereal while I listen to the noise
coming from the other side and my eyes
flood and create another ocean: but eventually,
I raze the walls that I construct, and all that separates
me from the world is a stately barrier of glass.

Place your hands on the glass and line them up
with mine: can you feel
the warmth from breath and skin, sweat and
rhythm, blood like tom-toms pounding and marching
all through my body? This is how we can be,
hand to hand, eye to eye, toe to toe, once I feel
I can approach the glass. We touch, and it can melt away
into a membrane, or it can eventually evaporate
and become a ghost that we used to look at each other
through: this is the understanding I need, and the vision
that you need. But as long as you insist on concrete
slapped with pity, pithy headlines, and ignorance,
you will never feel my handprints. You will never
feel my warmth. And you will be convinced that I am a
comic, hollow being that can never feel. And all
the while, I will be drowning in another one of my oceans
behind that wall.

Written 4/2/12
© 2012 Nicole Nicholson. All Rights Reserved.
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I wrote this to share today because it is World Autism Awareness Day (April 2, 2012). I hope you enjoy the poem and that it gives you another glimpse into my world.

-Nicole
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