Isolated No More

Filed Under (Acceptance, autism, Parenting) by Estee on 08-08-2010

Fellow Aut-Mom Bloggers: Kristina Chew, Kyra Anderson and Me

I’ve been to a few autism conferences in my time since Adam was diagnosed in 2003. The ones I found most helpful to me in those early days were the ones where many autistic adults “ran the show.” There was nothing more helpful to me at the time in trying to understand Adam, autism and the future for us both, than in meeting adults who were living their lives successfully — non verbal typists to wonderfully verbose Aspergians. I learned from everyone that there is a future for autistic people except that the issue for autistic people was that they were often not invited to speak at autism conferences for parents, or invited to participate on policy panels regarding the treatment and services required for autistic people.

As I said, I think this helped me become a more settled, accepting parent. I avoided parent conferences after that primarily because I was avoiding negative messages, fear and stereotypes perpetuated largely by non autistic “autism experts.”

A couple of years later, interested in pumping my writing life “up” again, I attended this year’s Blogher Conference in New York City where I met many autism mom bloggers that you may already be familiar with:

This Mom
Niks Mom
Thinking Guide to Autism
Susan Senator (although we crossed paths this trip)
Stimeyland
We Go With Him
Love That Max
MFA Mama
Sneak Peek At Me
Have Autism Will Travel
Pixie Mama
The Betty And Boo Chronicles
AspieAdvocate

Squidilicious

(If I missed a blog, can someone please post it in the comments?)

At the autism panel I was really overjoyed at the outcome as I have never heard parents so contented with the state of autistic being. For me, this is a real change from parent conferences I attended in the past. Perhaps this is the next step in the history of autism acceptance within which we are all participating and creating.

There was discussion about the isolation as an autism parent — that the diagnosis of autism, we were told, is “life-ending.” Then, there was laughter in the room.

Yet, I acknowledge that I did feel in the beginning that I would be all alone in this. There is some truth that when speaking to others about autism, it is sometimes tiring in that we are always educating others and thus feeling separate from them, not to mention some missed coffee klatches because our lives are different. Feelings of isolation are very real, and yet, I was wishing that every newly diagnosed parent and child (and I will say parent and child because it effects both so deeply), could listen to this kind of presentation. Maybe newbie autism parents would feel a sense of relief that we all so deserve.

My favorite line was from a mom who described her child having fun and being happy to which she responded with ironic laughter, “oh isn’t it so sad, there’s the misery.”

There was no misery in this autism room in NYC, We’re no psychedelic dreamers. We have our feet on the ground, and we’re still smiling.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.