Interview with Peter Bell of Autism Speaks

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I confronted Peter Bell (vice president of Autism Speaks) about the idea that a lot of us on the spectrum do not want to be cured. Here is what he had to say:

[youtube]http://www.youtube.com/watch?v=isLawfXj6RM[/youtube]

Audacious to post that here, Alex. Regardless, thanks for the 4 minutes of entertainment.

And please PM me NOW. I need something really badly.

"I fully respect people who don't want to be cured, so much that I like to sue them... And umm my son dosen't participate with everyone else so he needs to be made into a sheep, and if there is a way I can pretend to speak for everyone with a same condition as him in a way that will make them want to give me money, then I'll gladly exploit the f**k out of it"

I'm surprised someone from Autism Speaks even talked to you TBH, considering they think we're haunted by demons (that's the impression the I Am Autism video gave me, anyway).

All i saw was

"I respect that. Now: me, my child, me, me, me, my child, me, me, me, my child, me, me, me, me, my child, my child, me, me, my child, me, my child, my child, me, me, my child my child my child, mememememe, my child my child my child, me, me, me, me, me".

I would still love to know why they claim it to be worse than cancer, diabetes and pediatric AIDS though... hmmmmmmmm... or why they tend to use scare tactics through the media...

I see nothing wrong with the things he says he wants for his son.

My disagreement with him is, cure is the wrong word. He's not looking to cure his child's autism, but rather than, to help his child grow and develop and overcome his limitations.

The problem is insisting on the word "cure", even though that term doesn't make sense (in any good way, anyway) to many people with autism.

Note, for those who haven't watched, he doesn't insist on the word "cure". He just talks about what he wants for his child with autism, and explains what "cure" means, from his perspective. My reference to "insisting on the word 'cure'" is about, generally Autism Speaks and others continuing to use the word, even if they know some autistics don't want to be heard, and have heard the perspective of those autistics.

Someone I know posted a link to a blog post on the Austism Speaks blog titled, "In Their Own Words – I Have Autism". Except, it wasn't in the words of anyone with autism. It was written by a parent of someone with autism, as if speaking for their child. And it didn't sound like an autistic person talking.

Thankfully, the guy in this video of Alex's isn't doing that sort of thing. He's speaking for himself, from his perspective as a parent.

You could put horns on him and make his eyes glow if it helped.

Good on him for having the courage to speak about his experience as a parent. ANY parent only wants whats best for their child EVEN if the motivations seem selfish.

And good on you Alex for speaking with him and getting his side.

I have said this before, my first cousin was so severely autistsic he had to wear a helmet so he did not give himself constant concussions from hitting his head against walls, floors and so on and that is only one feature of his situation. My uncle and aunty never wanted to change my cousins personality, they just wanted him to at least SURVIVE. He died at the age of 18 due to heart failure. And I don't care if seizures aren't directly related to autism as someone mentioned in a past post, I am saying that they may have been able to be treated better if Chris was able to take the medication to control them as a child. As it stood, to get anything into his mouth medication wise or anything else he didn't want, required him to be sedated. My family did not want to sedate him, as it felt really cruel. So, is it cruel to "cure" or cruel to sedate constantly? Yep, that decision is only ONE of all the unbelievably hard decisions parents have to make.

So, I do not want to be cured as I don't feel I have anything to be cured of. But I can not and no-one else can, speak for the parents of children with such severe autism. If someone had presented a cure to my aunty and uncle I am sure they may have considered it. Why wouldn't they and if a cure was available, would they have been seen as NEGLIGENT for not wanting to try to provide a better life for their son???

As a parent I have had to make decisions for my child before he could make them for himself. Is seeing his delinquent father safe? Should he be circumcised? Should he be vaccinated? Should I let my male son play with dolls if he wants to? Should I let him go to that kids house that I don't like very much? Should I let him use social networking sites any younger than 15 years old? What age is a good age to talk about coping with grief or rejection? How do I talk about morals/ethics/religion? and so on. These are basic questions that every parent asks, but these are arbitrary when faced with a debilitating, chronic condition in a child. We try to make the best decisions we can with our children. We try to make massive life-long decisions for our kids based on FACTS and possible outcomes/consequences and sometimes we get it right and sometimes we get it wrong. At the end of the day, WE DO THE BEST WE CAN.

Put it this way, if a child was in a wheel chair and there was the possibility of a cure so that child could walk again, would you do it? Of course!! ! How is wanting your child to speak with you or be able to express wants/thoughts any different? I am not saying a "cure" can do that, I am simply offering a scenario.

I loved my cousin and still do, just the way he was. But the absolute heartbreak suffered by my family at his death was horrendous. A cure for autism may not have saved him, but if it worked to some degree, at least enough that he wasn't so frightened and was able to say "This is what I want" or "I understand that I need to take this medication", the outcome may have been different.

Thank you Alex for this piece. I am glad that a parent of a child with Autism feels he has a voice, I couldn't care less where he comes from, or what his political attachments to Autism Speaks might be. When did we start judging the individual on the organisation? Are all individuals in a communist country, communists? They may display communist traits due to their environment, but ultimately their values and vision may be different from the greater whole. AND I am not comparing Autism Speaks to a communist country, I am making an analogy.

What happened to being impartial and seeing both sides of the coin? Logic rules, people, and last time I looked WE have a CHOICE as to whether we participate in a "cure". Autism Speaks is not taking over the world last time I looked. I would be more worried about China on that scale .

Mics

IMFA(I)R topic

Instead of trying to make his son conform to the rest of the world (gettingmarried, two way dialogue, having facebook friends), perhaps Mr. Bell could learn to like the kid the way he is. Note I said "like". It is easy to "love" your child, but how many of us actually "like" the child as an individual? Maybe the kid will never be Charismatic Charlie or Mr. Lover, but, for example, my kid has a train collection that is professionally displayed, or that his art talent is quirky and some of those paintings would rival anything done by Picasso!! Look at your son the way you would his NT sibs. All children are different, and celebrated differently.

We must get over what our children will not be, and focus on the great stuff. Mr. Bell started to do this, and then he reverted to the grief that his son will never display some of the characteristics of NTs. A shame, really.

Mr. Bell, by all means investigate that which will help your son develop all his talents, but do not grieve for what is not there. Your son does not grieve for YOU.

Yeah he did flip between sounding like he wanted to change him to be something different than he is, but also on the other hand saying he did not want to change him but just allow him to overcome basically the difficulties as he perceives them, e.g. the inability to express himself, to share and communicate.
He seems like a person still struggling to come to grips with it but also clear he loves his child though and was speaking from the heart.

Awesome perspective and logic from Mr Bell. If people still have a problem with Autism Speaks after this video, there's a serious lack of logic around these parts!