Monday, April 14, 2014

On Labels, Awareness, and Community: Guest Article

On Labels, Awareness & Community
Cinder McDonald
March 26, 2014

I am Aspie.  I am also trans, genderqueer leaning toward male, gay, queer, physically disabled.  I am the mother of an Aspie young woman who stands tall and proud, has a busy social life and makes beautiful things.  I am the older brother of a nonverbal autistic man who sees shapes in clouds, finds endless wonder in car keys and tires, who signs “friend” whenever he sees Bert and Ernie on Sesame Street.  I am poly, with two husbands under one roof.  Poly means two incomes in addition to my puny disability check and it means I have enough help on-hand that I don’t have to have strangers coming into my house to provide personal care.   Sometimes I think I could drown under the weight of all these labels that seem to be stuck to me like stamps.   I should start introducing myself that way: “Hi, my name is Cinder, I collect labels and diagnoses”….

Tell me, what does it mean to be “aware” of autism?   I’ve never been quite clear on what all this “awareness” is supposed to do.   Lots of people are already very aware of me, since I am not the least bit shy with my opinions.  I’ve been told my secret superpower is pissing off people, making them look at things they’d rather not pay attention to.  Nobody can work up a good righteous outrage like I can.  I must admit such candor does not get me invited to too many parties and sometimes I feel sad about it.  Most of the time, I’m happy to be alone, to write, to express myself.

For all my intent to stay home and be an introvert, I find I am very good at starting groups and bringing people together.  I open my mouth, wonderful ideas pour forth, and the next thing I know, I’m having to act on those ideas.   Despite my great creativity and flair, I am terrible at fundraising.  Fortunately for me, I have two husbands who kindly indulge my group-starting, community-organizing addiction and don’t seem to mind too much when I spend household money building a float or buying lunch for young adult Aspies who rarely get to dine out.

Most Aspies in my generation had to grow up without knowing they were autistic.   Others were subjected to harsh therapies that harmed more than they helped.  We do our best, but our past experiences seem to hamper us more than we would like.   The Aspies of my daughter’s generation are different from us, they’ve grown up with knowledge of their identity.  They come into adulthood knowing about accommodations, from us, they get to see what autistic maturity looks like.  It’s less stressful.  I think it’s easier for them to embrace the power of community because of the wealth of tools they have.  Texting, Skype, Twitter and Facebook comes so easily to them.   When young Aspie adults form their community of choice, they do what other groups of young adults do.  They figure out housing.  They network to find jobs.  They go to school together.  They build long-term relationships.   Aspies tend to get along with other Aspies because of shared language, common interests and brain maturity relative to age.   We need to recognize that Aspie brains mature more slowly than neurotypical brains.   There are far too many Aspies who pushed hard in their early twenties, only to find themselves burned out and chronically ill in their forties.  

If you want really want to do something for people with autism, whether this month or any month, look for the autistic groups in your community that are run by people on the Spectrum.  They may not be the best advertised and I bet they are run on a shoestring, but they are there if you look hard enough.  Give of your time and money if you can.  I’m sure many of us could use help with transportation or organizing events.  Then next April, when you’ll see the awareness ads pop up, you can shrug your shoulders and say, “Awareness?  Ha.   I know folks on the Spectrum now.  Good people.  Good friends.”

Image of a lighthouse and Autism puzzle ship on the rocks. A rainbow beam comes from the lighthouse and shines on the rocks.