Sunday, May 30, 2010

Peter Bell of Autism Speaks talks about autism and his son

As readers of this blog know, I spent the latter half of last week at the IMFAR autism science conference. For the first time, my son Cubby accompanied me. He helped my friend Alex Plank, founder of the Wrong Planet website, to interview a number of people.


In this video Peter Bell talks about his son and his views on finding ways to help people who are truly disabled by autism, and want help, while recognizing that some on the spectrum just wish to be left alone.

In the image below, Peter's son Tyler and Alex check out a robot. The female on the right is Heather Knight of Aldebaran Robotics of Paris, France. I did not record the robot's name.



I'm really proud of the work Alex and my son did recording video interviews. Check it out and let me know what you think. In the next week Alex will be editing and uploading several more interviews.


5 comments:

Yvonne Mikulencak said...

John, My question is.. are the challenges his son is facing AS or a comorbid? It seems a lot of parents are attributing everything their child has as AS. If they sneeze and have a cold , its AS. If they have MS, they relate it to AS. Perhaps Autism Speaks can learn to differentiate what is actually AS and what is a co morbid disorder which anyone could have. NT's have OCD like AS people, NT's have speaking disabilities like AS people. I see Arthur Fleishmann work with his daughter Carly who could not and cannot speak , but learned to commuicate at 11 via computer... He took the initiative to work with the comorbid and now his daughter is leading an incredible life. As Donna states..we are a mixed salad .. what His son has that is so debilitating.. is it really AS related? I would hate to think my AS is being used for other disorders ..that is following the wrong trail for a real cure for a disorder... Autism is simply a different operating system of the brain..

John Elder Robison said...

Yvonne, speech impairments like Peter's son Tyler has are common in autistic people. I consider myself very lucky to have autistic social impairments but good language skills. I see so many autistic people with speech challenges . . .

Yvonne Mikulencak said...

John with all due respect.. where is the science on it? Many AS people like myself have OCD... , however, more NTs have OCD than AS people. This does not mean OCD is an AS trait. There is a separate gene for it... All I am asking is "since they have the money and want research for a cure, why are they not focusing on the causes of speech impairment and not just call it AS. Many NTs have speech impairments. Since they are science oriented.. I need more information on facts, not just his hopes and dreams and "guesses and assumptions". I think I am fair about this. this answers "I need more information".

Laura said...

John, I saw the video and Peter's comments. I agree with Peter as well. I wouldn't want to change my sons character. I struggled with putting my son on Ritalin for his ADHD and the one thing I said was the same as what Peter said; my son is very creative and I wouldn't want a pill to change that or discount that. I want my son to lead a happy life without changing the thread of who he is. So far, the Ritalin has helped him without changing who he is. I look forward to seeing more of Cubby's videos. Hope Cubby's mom is doing well. Take Care, Laura

Elena said...

OCD is connected to AS and who are you to say more NTs have it Yvonne, show me proof! i know lots of aspies and almost half of them have OCD, where as if you have NTs a lot less of them have OCD. it relates. so does ADD. i have both and i'm aspie. OCD like AS are brains that are wired differently. it's not a tumor, it's a whole brain. and it's wired a certain way.

and seriously, ritalin is for NTs, not autistics. they're trying to kill our differences! and that's a bad thing. i shudder to think if i had been put on ritalin. i chose to take meds as an adult, and don't regret it, but i wouldn't put that crap in a kid's body.

also, Autism Speaks doesn't help autistics, they want to cure us and make money off us. LOOK at their salaries, do some research. they speak for us instead of listening to us! they taint our reputation. look at the videos they've made. doesn't it appall you?