Friday, January 20, 2012

More media

Teenager Carly Fleishman has written a book with her dad Arthur coming out in March called Carly's voice. It's about her breakthrough communicating with a computer after years growing up as a child with autism who couldn't speak. Carly uses WordQ, a word-prediction software developed at Holland Bloorview.

In case you missed this 20-20 piece on Carly, here it is above on Youtube. While I think there's much to be learned from Carly's experience, I think it's important to remember that many children who are non-verbal won't have similar breakthroughs. Sometimes I worry that stories like this will set a new expectation among the public and create even more pressure on parents.

New definition of autism will exclude many, study finds is a NY Times piece looking at proposed changes to narrow the criteria for autism by the American Psychiatric Association.

For those who missed CBC's Ontario Today interview with No Ordinary Boy author Jennifer Johannesen yesterday, you can listen to the podcast here and download it here .

And I LOVED this story about a 25-year-old man with Down syndrome who owns and operates a successful restaurant with the help of his family. Tim's Place: A dream followed

Happy weekend!


Hi Louise - I watched that video a few days ago after a friend shared it on facebook with the usual excited sentiments. Reminded me of the video that was going around a few years ago of the triathlete dad who carried/biked/pulled his adult son with disabilities through his triathlons. I remember thinking, I hope no one expects me to do that, 'cause it ain't gonna happen!

Just doing my usual bit of advocating for reality checks :)

Hi Jennifer -- Yup, I hope what people take from the story is that lacking a voice doesn't mean you lack a rich inner life -- that's the important point!

I felt so relieved that you mentioned that video and put it into perspective. Whenever I see things like that, I do feel a surge of hope, but then it's quickly followed by a hard to describe needling of guilt and agitation and a tinge of despair. Thank you for saying what you said.

On another note, I hope you'll help to publicize an upcoming webinar that I helped produce about technology and communication with developmentally disabled children. I have the pdf file, but I can't find your email! I'm at elsophie AT gmail DOT com.

Thanks, Louise!

Exactly! I think these extreme examples help to shift people's thinking about disability, which is great. But a shame it needed shifting in the first place.