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 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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By Toni Lapp

Several people have asked me for updates on my son Ryan’s job-hunting quest. To date, he has not been called for an interview at the grocery store where he applied, but then, there are probably lots of teens without Asperger’s syndrome who are waiting for a callback, too.
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By Jeanne Holverstott, M.S.
Rumor has it that the new Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-V) will eliminate the diagnostic category of Asperger’s Syndrome, 16 years after its inception in the DSM-IV. “Asperger” symptoms will be combined with those of another mild form of autism to create a new category to be named.
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By Toni Lapp
There have been times that I doubted whether my 16-year-old son with Asperger’s, intelligent as he is, would be destined for college. When he reached the age when his teachers started giving out homework, I began receiving notices that assignments had not been turned in. Heck, sometimes I’d get notices that assignments that he’d completed in class hadn’t been turned in; they somehow got lost between his desk to the teacher’s inbox.

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By Jeanne Holverstott

Q: When we go out to dinner with friends and family, my teen-age son often regales the table with political discussions on topics that are usually out of reach for most kids his age. When he was a preteen, this would elicit chuckles from our friends. Now it’s starting to make me uncomfortable. Sometimes these friends will take the bait and debate him, and it never seems to turn out well. Other times they’ll wave off his precociousness, but he’ll persist. Sometimes he’ll even make political comments to the wait staff. It’s like he doesn’t know how else to engage people. I’m not sure how to handle these situations: by nipping it in the bud, playing along with him and hope it doesn’t go too far, or trying to change the subject.

What are your thoughts?
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By Toni Lapp
Over the weekend I attended Johnson County Community College’s conference on autism spectrum disorders, where I met several other parents, who, like me, were there to find more ways to support adolescents with Asperger’s syndrome.

I’m raising a teen-ager who attends mainstream classes at an area high school. One concern of mine has long been for him to have a social network.
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By Toni Lapp

First of all, kudos to director and writer Max Mayer for attempting to bring to the silver screen a story that probably has limited interest for the general audience. His effort earned him entry to the 2009 Sundance Film Festival where “Adam” received the Alfred P. Sloan Feature Film Prize.

After seeing “Adam” over the weekend, I’m compelled to write about a few of my impressions.
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By Toni Lapp
Behavior analyst Baker Wright vividly recalls the first time he was called in to consult on a child with Asperger’s syndrome. A school had referred a sixth-grader for behavioral services because of his disruptive behaviors – ranging from refusal to follow directions to crying and yelling in class.

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By Jeanne Holverstott, M.S.

Question: How do you tell a child that he or she has been diagnosed with Asperger’s Syndrome? Is this something that a 9-year-old needs to know? My feeling is to protect my son until it’s absolutely necessary – perhaps when his status becomes more of an issue. Is that wrong?

Answer: To begin with, let me share a story I will never forget.

“Don’t say the ‘A’ word about your brother,” a mom once said to her 7-year-old daughter. I was surprised to hear such a reprimand directed at a girl who was always polite, never crass. Somewhat jokingly, I asked when such colorful language had entered the repertoire. “We decided to tell her, you know, about it.” About what…..? There I was thinking about how behind I was in parenting literature to have missed a page on when to tell your little ones the little four-lettered ones. But then I understood, but not completely.

I do not have a child on the autism spectrum. I do not have children yet. I do not know how the possible grief and denial associated with parenting a child with an autism spectrum disorder feel.
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