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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, September 28, 2007

 

Praise Only for the Cured: A Comment on Jenny McCarthy, and How The Media and Society View Disability

My commentary on recent media events:

26 Comments:

Anonymous Maddy said...

Thank you.

1:12 PM  
Blogger Camille said...

I love it, Estee.

I would change "thoe who overcome" (I can't remember the exact phrasing" to "those who grow out of" or something like that. It sounds like with enough effort some autistic kids overcame their autism, but the others didn't try hard enough, which I KNOW you didn't mean to say.

There's the issue of kids being misdiagnosed as autistic and then developing normal, too, they didn't overcome "autism" because they never were autistic.

3:17 PM  
Blogger Joseph said...

I have yet to see a convincing "cured" autistic. Even Raun Kaufman, who is the poster adult of autism recovery, is (I believe) single and works for his parents. He does appear pretty normal on TV. But in fact, there's not a whole lot of difference between Raun Kaufman's outcome and that of any of the 13 "success stories" Kanner wrote about in 1972.

5:21 PM  
Anonymous Anonymous said...

What a gorgeous way of doing life history! Fantastic. We are looking at doing something similar for the people we support in our service! What a very touching story!

1:17 AM  
Blogger Jen said...

Thank you- that was great. Good work!

5:49 AM  
Blogger Alyric said...

Great post - loved it!

Does TAAP have regular office hours?

10:56 AM  
Blogger Estee Klar-Wolfond said...

Hi Alyric,

Can you email me at estee@taaproject.com so we can coordinate a call? We are in and out (meetings, life) but I am in the office every day. Mira works part-time.

11:39 AM  
Blogger Estee Klar-Wolfond said...

There will be a second part to this video.

The thing that I find extremely frightening is a reporters INABILITY to do research. It's just okay to print something from any press release. So when Laurie Mawlam goes on CBC and the anchor says that "science proves that biomed and diets work," it's all B.S.

A study of mice does not yet constitute "PROOF."

It's not just the fault of the quacks who just want to be right, it's the fault of the media who have such incredibly low standards of accuracy.

A cultural dialogue about autism and disability is necessary and the media ought to be looking into this side of the picture.

As for sensationalism and unproven science - it is utterly disappointing that we have no reliable media source and that media is really -- all about entertainment and selling papers.

Where are the really GOOD journalists, please???

12:09 PM  
Anonymous Jon said...

With the mainstream media, I think it goes further than not doing any research. When two MSM organisations got their maths/stats completely wrong re. UK autism prevalence rates, I phoned and e-mailed to explain carefully what they got wrong (as did a load of other people). Neither have properly corrected/retracted all their mistakes yet...

I've just blogged about Dorothy Bishop's excellent new article on Dore - a very powerful critique of a 'cure' for dyslexia, dyspraxia, ADHD, asperger's syndrome, and I'm guessing other things as well. An excellent, clear, entertaining article on an area of real public interest - but will the MSM pick up on the article?

Sorry, am I sounding bitter ;) nice video, btw :D

7:31 PM  
Anonymous Angela said...

You are so right! I love and accept my child as she is and always support her, I am the stressed not her, she is sooo happy!
When I am stressed I mean that my body and soul hurts from the challenges of motherhood. I am so exhausted but I know I am doing such a good job because my house is full of love and joy!
Of course I dream with the day she will tell me a story that happen to her in school but, she is the kid that screams the most across the school yard: "MOMIEEEEE" with so much exitment to see me when I pick her up. The others don't.

2:31 AM  
Anonymous Elissa said...

"Support autistic dignity, value and potential" - I think this says it all!

5:52 AM  
Anonymous Anonymous said...

I really liked your video. I think there is a message in there for all parents, regardless of what kind of interventions they choose for their children. I think acceptance is always the key before any other measures are pursued. This keeps a person in balance so they don't make desperate or short sighted decisions. Over the years, I have witnessed people sell off their homes and go into serious life altering debt in pursuit of therapies and treatments that do not have a proven track record of success in a large percentage of the people recieving them. It is very dangerous for families to jeopardize their security in this way. I am not against people looking into or pursuing therapies that may be different from what I might choose. I just think that prudence is in order and one must never lose sight of accepting their child for the person they are right now and that they will most likely always retain their condition to whatever extent, and that is alright.

1:07 PM  
Blogger Roxan said...

We seem to have posted the same video on our blogs.
I have a 19 year old Autistic daughter who is doing quite well, but the signs of Autism are still there. I've been told by a psychologist that my attitude toward her Autism is the best she has ever seen. When my daughter was diagnosed I didn't take a "poor me" attitude. I said "well that explains it." Infact, I was downright thrill at hearing the news. Not because I wanted my child to be that way, but because it answered the questions I had in my mind and gave me a way to shut up the accusers. The ones who said it was my fault she was like she was.

10:42 PM  
Blogger Estee Klar-Wolfond said...

Thanks, Roxan. It's my video. It's under The Autism Acceptance Project account on You Tube. Or taaproject.

Thanks for sharing your story.

5:47 AM  
Blogger Estee Klar-Wolfond said...

Elshiva,

please post your comment again. it did not come through.

5:09 AM  
Blogger jypsy said...

Thanx
We interrupt this Blog to bring you an important message......

11:09 AM  
Blogger farmwifetwo said...

Without high speed I cannot view the video.

But I get the gist.

Like Roxan I did the "so that's what's wrong"... I don't ever believe it was some mistake I made.

As for one who has a "techically cured by biomed treatments son"... I find that to be lies. He is not cured, the signs/symptoms etc are all there. Which surprises people when they see this "normal" child head bang his head off the floor last night at Timber Wolves b/c he was WOUND!!!... IMO there is no cure, just education and acceptance.

Yes, dairy makes him stoned. Yes we accidentally did an experiment was NASTY results (24 very long hours all over a tiny bit of butter)... but we removed dairy at 6mths from the little one and he's on the severe end of the spectrum... A "one size fits all".. does not "fit all".

What they don't show or tell is the hours of therapy. The hours of speech therapy and tutoring my son has also received. Removing dairy didn't cure him, removing dairy removed some symptoms that were harming him. The speech therapy, tutoring etc that he's received has made him the boy he is at 8.

Now.. off to an IEP/IPRC meeting at the school. I have my copy of "Teaching litteracy to children with significant disabilities". I don't take "we can't" for an answer when it comes to my Gr 1 boy.

S.

11:41 AM  
Blogger LAA and Family said...

Thanks for such a wonderful statement! I'm sharing it with others on my blog too.

11:48 PM  
Blogger Roxan said...

I was impressed with it and thought others on the outside should see it too. Hope you don't mind.

3:34 AM  
Blogger Casdok said...

Yes, thank you.

9:55 AM  
Anonymous Anonymous said...

Diagnosis: Autism


It happened before the rain came. Growing up in NJ, my husband and I had never gone more than a few weeks without rain. We moved to Los Angeles in July of 2004. By December of that same year we still hadn’t had a drop of rain. But we did get a diagnosis of autism for our son. Our lives changed and then the rain fell. We had missed the rain so we welcomed it, just as we did our son--with his autism. We embraced his differences while forging a plan to help with his deficits. We read books and found doctors with tried and tested therapies. We tasted success and kept moving forward. Sometimes I want the therapy to stop. I can see, in his eyes, how tired he gets. It is only then that I get angry that he has to work so hard to do things that come so naturally to other kids, like attending a birthday party or making up stories. I get angry at myself and consider letting him go back to rolling crayons off the desk and stimming as they hit the floor. Then I remember that my husband and I won’t always be around to accept him. It’s a thought that even as I write this, brings me to tears. So we do what parents should do and teach him our words and what is socially accepted. We give him hugs and kisses and tell him that we love him. He needs that, all children do. When I look toward the future I imagine my son and I talking over a cup of coffee. I tell him how thankful I am for teaching me one of the hardest tricks parenthood--acceptance. I thank him for all those times he lifted my mood from exhaustion to exhilaration with the upturn of his smile and the times he put up with me asking him to repeat words and phrases over and over again until he said them with the right affect. The truth is that we have become better people and better parents. How can that be a bad thing? I look at our journey through autism like a downpour that never lets up. We've built our boat and we're taking turns at the wheel. Recently it rained again. It hadn't rained in what seemed like over a year. Our son asked for an umbrella and ran outside wearing a raincoat and boots. He put down the umbrella and let the rain pour on his face. For a moment I almost stopped him and then I remembered what it was like to feel the rain on my face.

12:10 PM  
Blogger misha_k said...

This video is wonderful to see. Such a strong and powerful statement. I know I am so tired of seeing how the media portrays autism.

I'm like some of the other moms here in the fact that I wasn't devastated when my son got his diagnosis. My world didn't fall apart. If anything it made it more cohesive. I finally had an answer to what made him different from other kids he knew. I cheered. I thanked the psychologists. I was relieved. I finally had a solid foundation from which to base everything and go forward from there. And we've done just that. We don't mourn that my son is autistic. We celebrate it.

5:40 PM  
Anonymous Anonymous said...

Well said. I couldn't agree more. It was a huge relief, not a death sentence. I feel sorry for people who don't accept their children.

6:30 PM  
Anonymous Anonymous said...

I just became lost for hours within the internet and autism. Thank you so much for stating how I feel. I was slowly becoming depressed as I read and scanned page after page of information. My son apparently is PDD-NOS, whatever that really means. To me, my son is Troy. That is who he is and who he always will be. It's his smile that makes me get up every morning. His laughter that lightens my heart on a heavy day. His impromptu kisses and hugs that remind me of 4 teenage boys, he gives us the least amount of grief. And the list goes on. Thank you for reminding who my son is and not what my son is. I momentarily forgot.

Anne from Winnipeg

11:23 AM  
Anonymous Anonymous said...

Keep on going Anne from Winnipeg. Keep Troy loved and happy for that is what will make him grow. All of our children are precious--the typical and the not-so-typical ones. You just have a different journey to go on now than with your other boys. A journey that isn't so clear. So embrace the differences and celebrate them. He will never stop astounding you.

10:52 AM  
Blogger ballastexistenz said...

Camille: I would not even call it "growing out of". I might say "who pass better at the moment".

Saying that for instance, because the degree to which I pass has depended so much on a combination of situation, the amount of effort I could put into it, the amount of knowledge I had, and the prejudices and biases of the people around me, and I am sure that is true of many of the kids supposedly "normal" now (something that might not even be permanent).

12:03 PM  

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