SPECTRUM CONNECTION

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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By Toni Lapp
Last spring about this time was one of the most difficult periods I’d experienced as a parent of a child on the spectrum. It was my son’s freshman year at high school, and the transition from middle school had been difficult. I won’t go into detail, but suffice to say that there had been disciplinary issues and we were grappling with the appropriate measures to take with a child for whom normal rewards and punishments didn’t seem to apply.

There were times when I hated the circumstances I found myself in, but, even worse, I couldn’t commiserate with others who I felt would judge me as an ineffective parent for not being in better control.

And then I met another mother at my workplace who also had a son with Asperger’s syndrome.
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