SPECTRUM CONNECTION

By Toni Lapp
When classes ended at Penn Valley Community College in May, the school laid to rest its ABLE program, another victim of the sour economy, The Kansas City Star reported.

ABLE, an acronym for Academic Bridges for Learning Effectiveness, helps students with learning disabilities — many of whom are on the autism spectrum — navigate the transition to college life. It was founded at Longview Community College and had been in place for 10 years at Penn Valley.
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By Toni Lapp

As I leaf through the 164 pages of Missouri’s new autism guidelines (written about here), a thought occurs to me:

The typical well-child visit with a primary-care physician is not rigorous enough to detect signs of moderate or high-functioning autism in toddlers. At least not the well-child visits I remember, but then my oldest son was born in 1993, and nary a pediatrician had heard of Asperger’s syndrome then.
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By Toni Lapp

With autism prevalence rising at alarming rates in the United States, the push to make a diagnosis as early as possible has taken on new urgency. On Thursday, Missouri health officials unveiled the state’s first set of guidelines.

A grant by the Missouri Foundation for Health has made the 164-page Missouri Autism Guidelines available for free.

“This is a landmark document for the country, and definitely for our state,” said Michele Kilo, M.D., a developmental pediatrician at Children’s Mercy Hospital who served as one of four primary authors of the guidelines. “We’re hopeful it will be well-used and well-worn.” Missouri is only the second state to issue guidelines, the first state being California in 2001, Kilo said.

The guideline panel — a group of 42 professionals and parents who met over the course of a year — looked carefully at California’s guidelines, but in the end, came up with a completely new set, authors said. Missouri’s recommendations reflect more recent research and is more “state of the art,” said John Mantovani, medical director of St. John’s Mercy Children’s Hospital and Medical Center. “There has been a lot of progress in our understanding of the condition” since 2001, he said.
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By Toni Lapp

I was recently at a gathering that included other parents with children on the autism spectrum, and one of the parents declared loudly that he hated it when people faulted autism treatments that were not supported by science. Given that it was a social setting, I didn’t say anything… then.

At risk of being called a cynic, I’m going to offer my thoughts now. After all, if you are paying thousands of dollars for an experimental treatment and your child is showing a lessening of autistic symptoms, why listen to naysayers?
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By Toni Lapp
I have two sons, and each frequently complains about the other. No doubt, parents for time immemorial have wrung their hands over sibling squabbles.

But the sibling dynamic is set on its ear when one child has Asperger’s and the other is neurotypical, which is the case with our family. Further complicating our family hierarchy is the fact that Ryan (the Aspie) is two-and-a-half years older than his brother, but he does not always demonstrate the authority one would expect of the older sibling — not that Cory is a model of maturity.
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By Toni Lapp

Computerized binocular infrared pupillography measures light reflex in a study participant at MU Thompson Center.

It’s oft been said that the eyes are the window to the soul. Now researchers are wondering whether the eyes can offer insight into a person’s brain functioning. They suspect that pupil response times can indicate whether a person has autism.

Researchers as far back as 1961 noted that children with autism had sluggish pupil changes when attempting to track objects. Building on these observations, University of Missouri researchers at the Thompson Center for Autism and Neurodevelopmental Disorders are conducting a study of pupil response times in individuals with autism compared against response times of neurotypical individuals.

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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

Although a Kansas state senator has told the Topeka Capital-Journal that the future of an autism bill being considered by her committee is “looking cloudier and cloudier,” autism advocates remain steadfast in their support for legislation to mandate health insurance coverage for autism therapy.

Kansas law requires any new mandated health insurance coverage apply only to the state health care benefits program before a mandate can be approved by the legislature for the general population. Kate’s Law (SB 12/HB 2367), backed by the Kansas Coalition for Autism Legislation, was written to be exempt from this statute, which some lawmakers are opposed to.
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By Toni Lapp

An estimated 1,000 people braved rain and sleet to participate in the Autism Alliance of Greater Kansas City's walk at Unity Village in 2009. The walk will not be held this year.

After years of facing sleet, snow, freezing rains and other elements wrought by Mother Nature, the Autism Alliance of Greater Kansas City will not be organizing a fundraising walk this year at Unity Village in April — Autism Awareness Month.

The event, which had been held since 2003, had drawn over a thousand participants in recent years despite wintry conditions that inevitably developed on walk day. A Unity Village staffer said they were all set to hold the walk this April and had talked with the Alliance about possibilities.
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By Toni Lapp

Missouri Gov. Jay Nixon is calling the bipartisan passage of House bill 1311 “a major step forward for children with autism.”

On Thursday, representatives voted 135-18 in support of the bill, which would mandate insurance coverage of behavioral therapy for children with autism.
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