Autism Speaks (doesn't yet talk to me)

Just to let people know, I recently discovered that The Autism Acceptance Project website and my blog are resource links on Autism Speaks' website. (If you have trouble go to www.autismspeaks.org, then to Community, then resources and then to blogs).

I want people to know that Autism Speaks never contacted me for such permission to link from their site to mine and in no way am I currently affiliated with them. To link to my sites is open to anyone and I will not deny access, but I do not wish the public to think that there is tacit cooperation between us at this time as they have made no effort to contact me personally for a discussion on why I, along with many others, take offense to the way they politic and market autism.

I am open to having a discussion with Autism Speaks on their politics and the problems with it, with other autistic folks. I believe everyone has a lot to learn from each other, but that autistic people have to be at the forefront of this dialogue, and I stand beside them and every effort to make this happen.

I am happy that people from Autism Speaks' site will be traveling here, but in no way am I endorsing their mixed message, as recently seen on Larry King Live as an example of tying in acceptance with a cure for autism. Many autistic individuals and myself have real problems in applauding people "who become normal," or "who overcome their disability," or "independence" as the Holy Grail. There is a difference between that expectation and celebrating milestones. There is also a difference between the burden of low expectation and the expectation that someone is to look and become as normal as possible.

The difference is that we accept autism as a valuable way of being and contributing to society. We accept that autistic people learn at their own pace and in their own way. We do not hail indepdendence, although it doesn't stop us from also celebrating those milestones that may take a person there. In other words, we celebrate everyone and acknowledge the real challenges not as a form of pity, but in order to enable and assist others to reach their fullest potential. I think that those who directly experience such challenges are far better able to express the dynamics better than I, but as a mother who strives to understand the challenges my son faces, and who is beginning to express those frustrations with others and his limitations in his own typing, this is how I've, so far, made sense of it all.

I invite Autism Speaks and Larry King to invite me on their show to discuss the issues and implications of why their message of tying "hope, cure and recovery" are so problematic and dangerous, and how we can work as allies to stand beside the autistic adults who are really paving the way for our autistic children.

On a better note, here is David Wolman's Wired article (The Truth About Autism -- link on PDF above video) for which he interviewed me for an hour, but TAAProject received no mention.

Adam Speaks

I have no words yet for this...they are trivial. So I made a video instead:



PLEASE NOTE: This video was made with the knowledge of Adam, who has been very happy, by the way, at everyone's responses and congratulations. From hereonin, he will address HIS readers, directly.

Petition -- Hospital Ignores Family Wishes

Many of you subscribe to The Autism Acceptance Project's monthly newsletter. In my blog AND in our last issue, Barb Farlow, a mother with a child with Trisomy 13, wrote a piece on how a Toronto hospital issued a DNR without her consent. She has been an active advocate ever since for the rights of disabled individuals everywhere.

Barb directed me to this petition, where Grace Hospital in Winnipeg ignored a family's wishes and issued a DNR without their consent.

Why is this important to discuss and what relevance does it have for autistic people? It has to do with human value and worth and how others ascribe or take away that value. Do hospitals truly understand the great lives we lead with disability in the family? What happens when hospitals get to decide human worth when our non verbal children become ill? Will they think that our kids are "tragedies" and make consequent decisions based on that false assumption? Please consider what it means to sign that petition for our children.

Reasons to Smile

As I wrote already, Adam lost his first tooth last week. I had to travel for a couple of days, and the reports from school were that he went to all his friends to continue boasting how he lost a tooth.

"Tooth fell out," as he pointed with his finger. "Tooth fell out!"

Like all kids whose teeth fall out, he is really fascinated by this so much so, he is interacting and telling his peers, I think, more than ever. Yet, Adam can quietly work alongside them, even WITH them -- currently he is learning the map of Canada and already interested in the provinces. He knows were Nunavut is. I do not (except that is far North somewhere). As Adam's classmatees come to know him, they accept that he doesn't talk much, and they jest me that I come too early and peer at him. Adam, who has only been at this school for a year now, likes to push me away from recess and doesn't like me to come and get him before his classmates also have to leave. For us, that is really something. Peshaw with all those who believe that autistic people (even the non verbal ones who appear as if they are not paying attention) do not want to be social!!

Adam has also started his first REAL piano lessons. We loved music therapy, but I thought now is the time (since he is interested) to learn to really play.

Here he is with Grandma (grandparents are wonderful and patient teachers) as he has to learn to count and move and study his fingers. He already knows how to count and move his fingers, but this is a piano exercise. I'd say he's already got it down pat.



So, there are many reasons for us to smile as we continue to grow and learn.