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

Isolation, Loneliness, and the Angry Aspie? An Open Letter to the World and My Readers

While I have always tried to be truthful and revelatory when writing posts for this blog, in this post I am probably speaking with the most candor, bluntness, and with the rawest language I have used in a long time. I don’t see the need for a trigger warning, except that I am speaking about negative events and feelings I have been keeping private for a long time. Also, I will be using more profanity that my readers are used to seeing here on WWA. If that doesn’t scare you, read on. I should warn you that some of this may not read very cohesively and might seem like a very long rant, but I have had a need for a long time to say some of these things.

Isolation and Loneliness
When I was a little girl, I was a veritable chatterbox. Some of my earliest memories from around age five or six involve inundating other children, people my family knew, and my own parents with an explosion of words – what I was thinking or feeling, what I had been reading, things I’d seen earlier in the day that I thought were really marvelous, spectacular, or even beautiful, and so forth. I’m even guessing that some of these were lengthy descriptions of something related to my Aspie “special interests”. I remember Dad having to tell me to stop chatting and eat my food at dinner, as I would stop eating at some points and just start talking.

You probably wouldn’t think that the above description fits me if you were to meet me today. Yes, it is true that I can be very opinionated and expressive. In the past, I’ve not hesitated to “put myself out there” in terms of my poetry, my experiences with being an Aspie, or other things that interest me (anyone that’s chatted with me online about The Doors can attest to this). However, within the last few years I have been finding myself feeling more isolated and lonely than I have since I was a teenager in the small town in which I grew up, trying to negotiate the social landscape.

Believing that it was not wise to allow too much personal information about myself on the Internet, I chose not to speak of my experiences and feelings in this regard until now. In and of itself, this would not be a big deal. However, events were going on in mine and my fiancé’s lives that only worked to add distrust and paranoia to our already growing sense isolation. Our family was certainly of no help and in many cases, caused the very problems we were experiencing. Other events upon which I do not care to elaborate began to make us feel even less secure and more fearful. Although it may not seem obvious to those who know me from the autism and poetry communities, I was beginning to feel the need to close myself off and withdraw. And that, my friends, was where I began to lose the idea that I understood or had a true grasp on reality.

What does this have to do with autism or Asperger’s? Plenty. I’m sure there are many autistics or Aspies reading this right now who can identify with the feelings of isolation and loneliness of which I speak. While I fight for the emphasis of the positive things that autism can bring to our lives – our unique talents and gifts that enrich ourselves, our families, and our societies – I also believe in authenticity and honesty in revealing my personal and unique autistic experience. We need to be honest about the loneliness and isolation we may feel plus the difficulties we experience while navigating a neurotypical world. I figure it’s been long overdue for me to talk about this in my own life.

Continue reading

Poetry for Autism Awareness, Acceptance, and Understanding

Since I self-diagnosed myself in early 2010, I’ve been writing poems about autism and Asperger’s in order to understand them, as well as myself, and to make sense of what being autistic means. As part of both Autism Awareness/Acceptance/Understanding Month as well as during National Poetry Month, I’ve written some more poems about autism and Asperger’s.

You can read these poems over at Raven’s Wing Poetry, and I’ve gathered them all in one category to allow for easy finding.  Some of these are password protected, so you’ll need to hit me up either via comment moderation, Twitter, or the contact information on Raven’s Wing Poetry if you’d like the password to read them (I did this so that they are not considered “published” and thus I would still be able to submit them to journals or other markets).

Happy reading!

-Nicole

Putting the Awe in Autism: My Poem on TV and Other Thoughts

Note: this post is modified from a post which originally appeared on Raven’s Wing Poetry.

First, an announcement: an excerpt of the video of my poem, “You Don’t See It”, was featured in a Long Island TV FIOS segment about Awe In Autism.

The segment has been posted on MyLITV’s website in two videos. Part 1 features Awe In Autism, its founders (Deborah French and Kim Covell), and some of the work featured on the site, include the excerpt of my poem. Part 2 features “for dylan”, a song and music video which the founders call “the song behind the Awe in Autism” project.

In and amongst this bit of news and self-promotion, I feel the need to express a couple of things. First of all, if I haven’t said it before, my thanks and gratitude go to Awe in Autism for giving the opportunity for my poetry, namely “You Don’t See It”, to be featured on their site. AWE has given many autistic artists, musicians, poets, and others an opportunity to have their work seen, heard, and accessed. Also, as Kim Covell states in the first video, artists with autism often have a harder time self-promoting, and while I’ve gotten used to it thanks to the Internet, I must say I still find the task daunting sometimes. I am grateful for the opportunity for my work to reach a wider audience and go beyond this blog thanks to AWE.

Secondly, as I have said before, “You Don’t See It” is probably my best statement and expression to the world of what having Aspergers/being autistic is like. The experience of self-discovery and acceptance has been joyful and at times painful and overwhelming — but probably the most significant thing I could say is that is has been enlightening. And through it all, the craft of writing and poetry have been a conduit and a means for this journey.

Writing is my native language. I am much, much better at the written word than I am at oral communication: there are times that my tongue fails, but praise God my pen does not. This is part of my reality as an autistic person, and is true for many others. The poetry helps me say what sometimes my lips cannot. I hope I have given you, the readers of WWA, at least a glimpse or a peek at what that reality — and my reality as a whole — is. I also hope that through the writings on this blog, both prose and poetry, that I have reached you, moved you, connected with you, made you think, and most of all, made you feel.

Finally, please consider not only watching the videos of the segment but visiting Awe in Autism to see the vast, wonderful spectrum of art by creative and talented autistic individuals. I can promise you that you will not be disappointed, but amazed at the breadth of expression the site has to offer.

Saludos,

Nicole