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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, February 29, 2008

 

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.

12 Comments:

Blogger Casdok said...

I hope they do invite you on their show!!

12:29 PM  
Blogger misha_k said...

Considering Autism Speaks is linked to you they too should be open to having a discussion with you and autistic individuals. But I have a feeling that won't be happening any time soon. So, I find it hypocritical that they link to you but have done nothing to start an ongoing conversation regarding autism with those who are autistic.

3:04 PM  
Blogger iportion said...

All I could find was the CNN feed back form

The only thing I found was this feedback form
http://www.cnn.com/feedback/forms/form5.html?12

3:50 PM  
Anonymous Amanda said...

Nobody needs permission in order to link to a website. I get what you're saying, but I could link to any autism organization I wanted to without asking and be totally within my rights, and any autism organization can do the same to any other.

4:50 PM  
Blogger Estee Klar-Wolfond said...

Amanda,

Yes, I know that anyone can link to websites...what I was concerned about was the implication that somehow I was part of it.

I want to make clear that I was not aware until I stumbled from my site meter onto the link. I also want to encourage continued dialogue about the problems of their methodology as a large autism organization.

5:03 PM  
Blogger Estee Klar-Wolfond said...

ipotion,

Did you follow my written direction?

Go to www.autismspeaks.org. Then go to Community. Then go to Resources. Then go to Blogs.

5:04 PM  
Blogger S.L. said...

"I invite Autism Speaks and Larry King to invite me on their show..."

That will be an amazing day! I understand completely why you are making this distinction. I am really curious as to how TAAP became a link on their website (last I checked, "acceptance" is a word simply not allowed at Autism Speaks).

12:33 AM  
Blogger iportion said...

No, LOL I was trying to find Larry King producer info for you. Sorry I wasn't clear.

8:37 AM  
Blogger iportion said...

I do love the sweetness of this site

8:37 AM  
Blogger Erin said...

I just found your site. My son was diagnosed with Asperger's 6 years ago when information was difficult to come by. I have always cringed at the movements to "cure" autism, blame it on immunizations, and never stop to consider the people affected. I have felt quite alone in my viewpoints on the subject until just recently. You've done a beautiful job with your site.

10:35 AM  
Blogger LAA and Family said...

I hope that Larry King will have you on his show some day too! The two shows of his I have seem about autism are so negative about autism.

12:15 AM  
Anonymous shelly said...

I have been reading your entries and thank you so much for sharing them.I really hope that you do get a chance to go on Larry King live. As a mother of two autistic children it is hard but I love my children with all my heart. So people do not understand what parents who go thru this endure. Someone needs to speak,My name is Shelly and I really applaud everything you are doing. http:leshel.word.press.con & http://stepinstones.blogspot.com/ is where I do my daily entries regarding my life with my family and dealing with autism. Thank you for being a light.

11:47 PM  

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