My Poem, “Color (A Modest Plea)” Published in Shift Journal

Greetings! My poem, “Color (A Modest Plea)“, was published today in Shift Journal of Alternatives: Neurodiversity and social change.

For those not familiar with Shift Journal, its premise is that autism has existed all along and it entertains “the notion of autistic as a legitimate way to be in the world, from the crossroads of theory, society, and personal experience”.

The poem was inspired by a piece by Rachel Cohen-Rottenberg of Journeys with Autism which appeared earlier this month in Shift Journal, “An Open Letter to Robert MacNeil Regarding PBS’ Autism Now Series“. I used the same quote by Robert MacNeil from the series to jump-start this poem as one of 30 poems I am writing for National Poetry Month. Please jog over to Shift Journal to read it, and check out the many other contributions in the journal about autism and neurodiversity.

-Nicole

Autistic Adults Speak on Rethinking Autism

Please check out the new “Our Voice” page on Rethinking Autism’s website. Autistic adults have lent their voices — advice and insight — on what they would like parents of autistic children to know. I have a quote there as well, as well as Sharon daVanport and Tricia Kennedy of Autism Women’s Network and Kat Bjornstad. There appears to be a video in the works — stay tuned! (And have I mentioned that I think Rethinking Autism rocks?)

-Nicole

The Autism Gene: What Does It Mean for the Autistic Woman?

I came across this article on Shift Journal this past Friday, which discussed the recent results of a study conducted at George Washington University about the genetics of autism. The researchers in question found that one particular gene in question, retinoic acid-related orphan receptor-alpha (known as RORA for short) may be responsible for the appearance of autistic development and tendencies in a person’s brain and nervous system.

How the RORA Gene Works

How exactly does this work? This report by MSNBC of the researchers’ results explains it this way: during the gestation period of a human baby, there is both estrogen and testosterone present in the mother’s womb. Both of these hormones affect the expression of the RORA gene, each in its own way: estrogen helps promote the expression of the gene, while testosterone inhibits it.

Why is this significant? While more research on the function of the RORA gene is still needed, what researchers do know is that the RORA gene is responsible for promoting the expression of, or “turning on”, so many other genes. For example, as the MSNBC article quoting researcher Valerie Hu said, the RORA gene “has been shown to protect neurons against the effects of stress and inflammation — both of which are elevated in autism” (which in my mind seems to suggest that the “intense world” theory of autism is correct).

In other words, too much testosterone in your mother’s womb, as the study theorizes, may well be responsible for the development and expression of autistic traits in your brain.

What About the Autistic Woman?

This conclusion at first glance sounds rather simplistic, and I believe this bears more study and exploration. But some immediate questions came to my mind…and all of them related to the autistic or Asperger woman.

First, I wondered: how might these findings be relevant to autistic women? The MSNBC article framed the results in terms of higher rates of autism spectrum disorder in boys and cited the typical 4:1 ratio of autistic men to women (I believe that women are underdiagnosed anyway, but that’s a whole ‘nother subject) and suggested that estrogen may have some mitigating qualities in terms of the RORA gene for women. Given this, and assuming that the testosterone/estrogen balance is one of the primary factors responsible for the development of ASD, does this mean that autistic girls and women may have received too much testosterone or not enough estrogen in the womb?

Then I remembered a book I’d read a couple of years ago –Why Men Don’t Listen and Women Can’t Read Maps: How We’re Different and What To Do About It by Barbara and Allen Pease. One section in particular spoke to how sex hormones affect the brain development, or “wiring” if you will, in a developing fetus and drew on Dr. Gunther Dorner, who has done research in sex-related brain differences and sexual orientation.

How does this all work? According to Pease and Pease, the basic template for the human body is female – up until between the sixth to eighth week after conception. Dorner’s research showed male hormones are the key to changing that “template”: in fetuses which are genetic boys (XY), testosterone in particular is used in the developing body to form testes and to configure the brain for masculine traits and behaviors. In contrast, little to no male hormone is typically present with a genetically female fetus (XX) and thus the body forms female genitalia and the brain remains female according to the original template; estrogen facilitates the continuation and completion of the female brain wiring.

So what does this mean? As the Peases explain it, testosterone is first used for the development of the male genitalia and whatever remains is used for sex-linked brain development. If there is not enough testosterone, then the brain may not completely develop with male wiring – he will end up with typically female thinking patterns and abilities in varying degrees according to how much testosterone was lacking during development. Conversely, if a female fetus accidently receives too much testosterone, she may end up with some male brain wiring in varying degrees, again according to how much testosterone she received in the womb.

Gender Identity and the Autistic Woman

Following this line of thinking, one could conclude that autistic women may have received too much testosterone in the womb and might have developed more male-wired brains. This conclusion lines up with Simon Baron-Cohen’s ”extreme male brain” theory of autism. While I still need to research the ins and outs of his theory, I will continue following this logic for just a moment and ask the question: so what does this mean for autistic women and their sense of gender identity?

I have repeatedly encountered other autistic women who have reported that they do not feel like a typical girl or woman, or that they found themselves not exhibiting behaviors typically expected of a girl or woman. For example, in her list of female Aspergian traits, Rudy Simone mentions that Aspie women “may have androgynous traits despite an outwardly feminine appearance; thinks of herself as half-male, half-female (well-balanced anima/animus)”. And Liane Holliday Willey documents a little of this in her book, Pretending to Be Normal in the following passage:

”I designed myself for comfort and convenience, not trends. This drove my girlfriends beyond distraction. They were forever advising me to pay more attention to my appearance. They would take me into the bathroom to and give me hints on how to wear makeup and how to fix my hair. They would remind me how gross it was for me not to shave my legs or tuck my shirt in or wear the same outfit several times in one week.”

And this is true for me too. While I am biologically female, I have never felt at home in the world of women. I have trouble understanding and socializing with most neurotypical women, and I am not interested in the same things that they are: I’d rather talk about the Enneagram or philosophy than about the latest gossip in the mill. My sense of fashion and style has come from years of observation, developing my own color palettes (I find that black, purple, blue, red, gold, and silver are each to match with each other), finding comfortable fabrics and shoes, and making a lot of mistakes, and it did not come natural to me; you are looking at the girl who was more interested in Greek mythology and African-American poetry than fixing her hair, which used to drive the aunt who raised me to distraction. And as I have mentioned before, I have empathy but lack the ability sometimes to decode the signals of what people are feeling and what they might need. Truthfully, I do almost feel half-female, half-male as Simone described above – for example, I have a primary male alter-ego who finds himself as the speaker in about a good third of my poems.

Back to Brain Wiring

The Pease’s book discusses a great deal more about how gender affects brain wiring and breaks down specifics between typically male and female characteristics. I plan to address these differences in a later post, and examine whether autistic women exhibit more specific characteristics related to male-wired brains. At least right now, I am beginning to think that maybe there is a correlation between hormones, brain wiring, and autism. I think this needs more study, and it would be interesting to assess what kinds of gender-related brain wiring that autistic women exhibit.

So…what do you think? Is the conclusion too simplistic? Might there be a correlation between hormones, brain wiring, and autism? As an autistic woman, do you find yourself thinking and acting in ways that are either not typically feminine at all or even are more typically considered masculine? I would like to hear from you.

Until next time,

Nicole

Workplace Bullying and the Autistic Employee, Part I: The Basics of Bullying

In my ongoing research, I recently found an article from the Workplace Bullying Institute about self-defeating stigmas held by adults bullied in the workplace. While reading the article, I began to think about my own experiences with workplace bullying and recognized some of my own shame about it.

Then, I thought about autistic adults and workplace bullying as a whole. According to a 2010 survey by the WBI, 35% of workers have experienced bullying firsthand. With estimates of autistic children being bullied as high as 90%, it’s not hard to imagine that many autistic adults have been bullied as both children and adults. And if what the WBI call a “silent epidemic” is distressing to neurotypical employees, you can imagine what kind of pain and distress it might cause for an autistic employee.

Continue reading

Speech (A Poem)

Listen carefully. Hold your ear to the page
and hear the speech of hushed silence, how words
can rip a page apart if they are not careful. These little
black crispations carry swords and scissors – you just don’t know it
yet, and you won’t until you wake up the next morning and find
a small continent of blood, soaking in as a pillow stain
where your ear was resting all night.

There is a nook in the neck of the k where it
creased a crick while searching for a kiss, or for the end
of a bottomless ocean – that singular syllable made out of German slang
that I am very fond of using. But I will spare you X-rated fricatives
and give you the nectar from the nook instead. There is
also the curled come-hither of the c that looped itself
through the a hole in one of my earlobes after it snuck out of
my brain, and an n that strives to know how to fashion
the curve of its front leg after the curve of my nose. Every letter
is an escape artist – they all existed
as pictures projected onto the thick drive-in theater screen
made out of bone that stands behind my eyes. Everything
gets filed under vision.

This is what happens when speech becomes futile. You see,
I have three mouths – one on my face, one below my belt, and the
last one existing in the center of my brain. It grows teeth
as the words come, busting through bloody gums that eventually
send speech down the nerves of my arms and into my fingertips. Magically,
the teeth turn into type, this hushed silence
that you are reading right now. My brain is wired

to be a picture bank, a sound disc dictionary
that spins as the track to a thirty-four year-long movie
that has not yet ended or sent to the cutting room floor. It was
wired for me by invisible Asperger fingers that snuck inside my mother’s womb
while cell and soul were being knit together. And it is
wired for sound to be received through your eyes. Listen carefully. Don’t
read my lips. You won’t find anything there today.

—————————————————
This poem was one of the two specifically written for Autistics Speaking Day. The other, “Back Door Blues“, is over at Raven’s Wing Poetry. There is a list of other poems I am sharing today here. And hats off to everyone participating in Autistics Speaking Day.

 -Nicole

Autistics Speaking Day Is Tomorrow

As you probably know, Autistics Speaking Day is tomorrow, November 1. Many of us on the spectrum have chosen this day to speak out instead of shut down, and The Coffee Klatch will be hosting a 24-Hour Chat on TweetChat tomorrow for Autistics Speaking Day. Also, other events and stuff may be happening too: feel free to check out the Autistics Speaking Day event page on Facebook for more info.

And I will be doing what I do best — poetry. I will be sharing some new poems I have written just for Autistics Speaking Day on here and Raven’s Wing Poetry, as well as sharing some other poems I’ve written in the past. I will post a list tomorrow of all of the poems here as well (so you don’t have to go a’diggin’) as well as Tweeting and posting on FB as much as possible. I look forward to joining everyone speaking out tomorrow in the Interwebs and Blogosphere and am honored to be part of such an event. Be LOUD and be PROUD on November 1!

-Nicole

ANCA 2010 Naturally Autistic Awards

We are less than a week away from the 2010 ANCA Naturally Autistic Awards. The awards ceremony is set to take place in Vancouver, BC on Saturday, October 30.

ANCA has been in existence since 1995 and its mission is to ” support the natural development of autistic people by providing education and training to autistic individuals, their families, and the community at large.” They have been holding the yearly Naturally Autistic Event in Vancouver, which celebrate artistic talent in autistic children and adults — but this is the FIRST year that ANCA has opened up awards and participation to artists, writers, filmmakers, and musicians outside the Canada. In addition to Canadian awards winners, this year’s ceremonies will feature artists from the United States and Austrailia.

The program of that afternoon’s ceremonies can be viewed at http://flipflashpages.uniflip.com/2/34838/73200/pub/index.html or via PDF at http://www.naturallyautistic.com/wp/wp-content/uploads/2010/03/NA-Program-final.pdf.

Tickets are still available for this event at: http://naturallyautistic.eventbrite.com/?ref=ebtn

Please watch this blog for more developements or check out ANCA’s Facebook Page. Also, check out this note on AutismHWY’s Facebook page discussing and supporting the upcoming awards.

-Nicole

This Is Why We Do What We Do

For those of you who have been following this blog or have been around the Interwebs, you probably know by now about Autistics Speaking Day (for those who don’t know, check out the link and my last post about this.)

I received a comment about this which I thought was especially thoughtful and articulate from an autistic gentleman who counsels adults on the spectrum. I especially loved the last half of his post and thought, “This is why we speak out. This is why we are self-advocates. This is why we do what we do.”

Please read the comment from Jim below:

“I wholelly agree. I have autism as a diagnosis (since my 6th). I’m also a councellor specialized in coaching of adults with autism and a normal to high intelligence.

In my communication with clients, the main issues they speak of are:
* sexuality and the wish to have intimate relations.
* communication, and the difficulties in verbal face 2 face communication with non autists.
* giving meaning to their lives.
* wanting to be treated as equal, worthy citizens.

Some clients prefer speaking back to back, some prefer internet chat or e-mail, some prefer text…… very few prefer face to face contact or telephone voice contact.

modern communication media have increased the communicative capacities of persons with autism. Unfortuneately, the internet has also become a gathering place of non autists who choose to give meaning to their lives by emphasizing how pitifull we are, and advocating a cure for us.

Don’t fix us, we aren’t broken.
Don’t pity us, we aren’t pitifull.
Don’t change us, accept us as we are.

Cherish us.
Challenge us.
And watch what we do.

Try to connect with us.
And follow our lead.
Because we will innovate.
Because we have to innovate.
Because we don’t understand the standard.
So we’ll make our own.”

And maybe one of us will be foolish enough.
To show the rest of you the way to the stars…….”

Bravo!

Also, please check out these other amazing posts and pages about Autistics Speaking Day:

And if you find any other awesome or thought-provoking posts about it, PLEASE don’t hesitate to share them in the comments.

-Nicole

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