March 14, 2010
By Toni Lapp
Critics of Autism Speaks have long complained that the group did not have any autistic people on its boards. Launched in 2005 by grandparents of an autistic boy, through a series of mergers Autism Speaks has quickly grown into the nation’s largest autism advocacy and research organization.
But many adults with autism, particularly those with Asperger’s and high-functioning autism, have asserted that Autism Speaks does not represent their interests. They have a mantra: “Autism Speaks doesn’t speak for me.”
(Disclosure: my 17-year-old son with Asperger’s Syndrome considers himself among this group.)
Could it be that Autism Speaks listened? Last week it was announced that John Elder Robison joined the group’s Scientific and Treatment Advisory Boards.
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March 10, 2010
By Jeanne Holverstott, M.S.
An initial clinical interview with a parent of a child with an ASD commonly follows this script:
Me: “Can you tell me about your child?”
Parent: “Yes. Well, he’s high-functioning. He…..”
Pause Script.
Question to Reader: Have you heard this before? Said this before? If so, complete the sentence with what you have said or heard.
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March 7, 2009
By Toni Lapp
Yesterday I had the pleasure of attending the 2009 Autism Conference, organized by the Autism Alliance of Greater KC and the Autism Society of America Heartland chapter.
Keynote speaker Peter Gerhardt’s comments in particular provided food for thought. He noted that he prefers not to use labels such as high-functioning and low-functioning, instead using terms describing how verbal an individual is. He made the point that some folks on the spectrum who can hardly utter a word have learned to lead productive lives, in some cases supporting themselves through microbusinesses (more on that for another day). Thus, he categorizes according to verbal skills, i.e., highly verbal or not verbal.
The labels tend to divide us as a group, Gerhardt asserted. We might agree on issues 90 percent of the time, yet instead focus on the 10 percent of issues that we are divided on.
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