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“.

 

 

Sometimes, It’s Nice to Know that You’re Not the Only One.

Earlier this morning, I had a small, yet profound moment which was worth pausing to take notice of.

Since I’ve been unable to be as involved lately with the autism community at large (namely, I have been unable to blog, tweet, or read anyone else’s blogs), I’ve been feeling a bit disconnected. It’s strange how this might happen, even if your loved ones are also on the spectrum: my fiance shows signs of being  a spectrumite and I conjecture that if he had been diagnosed as a kid by DSM-IV criteria, he would probably be diagnosed with PDD-NOS. Also, we suspect that another one of our family might also be on the spectrum as well. Continue reading

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