Isolated No More
Filed Under (Acceptance, Parenting, autism) by Estee on 08-08-2010
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
(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.





ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer.Curator of Art. Founder of The Autism Acceptance Project. Mother of Adam. I like to write about our journey, musings, attitudes towards autism.












I am a retired teacher of kids with autism and couldn’t agree more. The kids themselves have always been my best teachers. I highly recommend the Autism National Committee (“Autcom”) and its annual conference to all who wish to learn from the “real” experts. This year the conference will be held in Milwaukee, WIsconsin, Oct. 15-16. Visit the web site for more info. http://www.autcom.org
beautifully said, estee!
Char, I made sure to mention Autcom, actually, during the autism panel. Thank you for mentioning here as well!!
That room was a really wonderful room to be in. It made me so very happy. It was wonderful to meet you.
It was so great meeting you :)
It’s great to see more and more of us, autistic people and non-autistic allies alike, isolated no more.
Sounds like a lot of fun — I hope that in the future, you and Adam will be able to attend Autreat… The blog post you’d write would be a definite must read.
Oh, and the link to Stimeyland is giving a 404… :(
I wrote a post about Autreat in the Joy of Autism blog (archived at the side margin). I had not attended back then with Adam because he was really little. It had a great impact on me.
The only problem is that to find it, you’d have to skim through 800 pages. I unfortunately had to take that site down for personal reasons and then thankfully was able to archive it and re-post it here on this site.
If I can find it, I’ll maybe repost it here in the comments section.
I am most pleased with your observation of acceptance of autism; of the turn-around of dire predictions given to parents at diagnosis.
I’m wondering about comparing ‘acceptance’ of autism to the trend of attitude toward Down syndrome in the past – ?
I don’t see Shannon DeRosa’s blog listed although is editor of Thinking Person’s Guide. (Since you asked)
I put the Thinking Person’s Guide to Autism there. I should also put her other blogs…thank you.
It would be interesting, perhaps, for readers to turn to the Canadian Down Syndrome Society as IMO a really good organization that advocates postiviely, realisitcally and for people with Down Syndrom. They prepare packages for parents of what to expect, how to navigate, and deal with the life-long realities and training that help people with Down Syndrom contribute to society as they are.
I need not rave on … here is the link: http://www.cdss.ca/