LEAD STORY

  • Plug Pulled on Penn Valley’s ABLE Program

    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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  • Summer Travel Tips for Families Living with Autism

    If you’re traveling with an individual with autism, here are some tips from the experts to make the trip more enjoyable for all concerned.

    Plan in advance. Call ahead and inform the airline, hotel, resort and cruise line of the individual’s situation and inquire what special accommodations – fridge, inside room – are available.
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  • ‘Landmark’ Autism Guidelines Touted for Missouri

    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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  • Series on Dubious Autism Treatments Wins Journalism Award

    By Toni Lapp

    Two reporters from the Chicago Tribune won top honors from the Association of Health Care Journalism over the weekend for their series on dubious autism treatments, reports that AHCJ judges said “bring new clarity to a notoriously murky subject.”
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DEVELOPMENTS

  • KC Autism Alliance Calls Off Walk

    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 [...]

  • Missouri House Passes Autism Bill

    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.
    Last year, a measure that passed the Missouri Senate would [...]

  • MU Thompson Center Extends Recruiting in Landmark Autism Research Project

    By Toni Lapp

    Anyone who has a child with autism has at least a passing interest in research of the disorder, so I assume we are all now familiar with the 1998 study published in The Lancet medical journal by British researcher Andrew Wakefield. His work purportedly linked the measles, mumps and rubella vaccine — or [...]

EDUCATION

  • Modifications to Ease Anxiety at School

    By Jeanne Holverstott, M.S.
    One of the most common co-morbid conditions within ASD is an anxiety disorder. Whether anxiety is part of the diagnostic make-up of the spectrum or whether anxiety warrants an “additional” diagnosis (hence becoming a co-morbid condition) is akin to the “chicken or the egg” dilemma. Because anxiety rears its ugly head in [...]

  • Commentary: The Wall of Fame or The Wall of Shame

    By Jeanne Holverstott, M.S.
    A parent of a client e-mailed me a copy of the school newsletter and asked me to look at the “Wall of Fame” students on page 6. Placement on the “Wall” was based on the Eight Keys of Excellence: Commitment, Flexibility, Balance, Speak with Good Purpose, Integrity, This is it!, Ownership, and [...]

  • Picking One’s Battles at an IEP Meeting

    By Jeanne Holverstott, M.S.

    A recent IEP meeting made it apparent that ignorance is only bliss from the perspective of the ignorant. For the rest of us, ignorance is torture. And, for those individuals on the autism spectrum, ignorance is disastrous.
    The principal of a local school attributed the social and emotional struggles of my client to [...]

THERAPY

  • YMCA Challenger Program Wins Grant from Autism Speaks

    By Toni Lapp
    Thanks to a grant from Autism Speaks, a YMCA program that benefits children on the autism spectrum will be expanding.
    The YMCA of Greater Kansas City Challenger Athletics program already provides year-round opportunities for children with disabilities to participate in sports, recreation and social integration activities. Activities that have paired children with disabilities [...]

  • Deconstructing the Meltdown

    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.

  • How Service Dogs Help Kids on the Spectrum

    Our son’s service dog changed his life.

MEDIA REVIEWS

  • Buy Sunglasses, Support Autism Org

    High-end sunglass maker Oakley, Inc. has partnered with Talk About Curing Autism (TACA), an organization that supports, empowers and educates families living with autism. Oakley has created unique renditions of two of its popular eyewear designs and will donate $20 to TACA with each sale of these special editions. This is the final week to take [...]

  • A Primer for Girls on the Spectrum Entering Middle School

    By Toni Lapp
    Think back to when you were preparing to make the transition from grade school to middle school (or junior high, if you were like me). Chances are, your social interactions gave you an inkling of what to expect. Perhaps you had older friends who were in upper grades, or maybe you had friends [...]

  • Books Offer Insights from Siblings

    By Toni Lapp
    Looking for a book to help a youngster in your life understand autism? There are a few new books out written for kids on the spectrum or who have siblings with autism.

    The newest is “My Brother Charlie,” (Scholastic, April 2010) written by actress (and “The Apprentice” contestant) Holly Robinson Peete and her 11-year-old [...]

COMMENTARY

  • Picking One’s Battles at an IEP Meeting

    By Jeanne Holverstott, M.S.

    A recent IEP meeting made it apparent that ignorance is only bliss from the perspective of the ignorant. For the rest of us, ignorance is torture. And, for those individuals on the autism spectrum, ignorance is disastrous.
    The principal of a local school attributed the social and emotional struggles of my client to [...]

  • Can Mo. Pass Autism Legislation if its Lawmakers are for Sale?

    As Missourians prepare for another round in the push to pass autism legislation, they might better scrutinize the actions of their lawmakers.

  • Does “Adam” Get It Right?

    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.


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ASK AN AUTISM SPECTRUM SPECIALIST

The Summer Break: A Catch-22?

By Jeanne Holverstott, M.S.

Question: It seems like summer can be full of pitfalls for my son with Asperger’s — the structure has gone away, and he’s no longer in contact with classmates. He is content to play on the computer all day, but seems to get moody more easily. Should we treat summer vacation as a long break from school-year stress, or what?  

Answer: Summer vacation presents a contradiction: Children with autism spectrum disorders thrive on structure, routine, consistency. Summer vacation throws these principles of ASD parenting and behavior management in flux.

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DEVELOPING TALENTS

Intervene, Intervene, Intervene

By Kate Duffy

A while back, Toni, the SpectrumConnection editor, asked me to write about how far parents should go to help their teens on the spectrum land a job. Since then, several of our Hot Topics parents have shared their kids’ job search stories with me, and I realized there was no easy answer to her question. For the most part, though, their stories revolved around the kids’ inability to accurately read situations, to remember instructions and to multitask to make a deadline. Looking at that list, it sounds like business as usual on the job for most of us — which is why it is so very important that our kids start learning about the world of work as soon as they can.

That’s why the short answer to Toni’s question is this: do what you need to do.

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EVENTS

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PERSPECTIVES


  • Is Primary Care Ill-Equipped for Detecting Autism?

    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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  • Science?! Ba Humbug!

    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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  • The Special Role of Siblings

    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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  • A Game Changer at Autism Speaks?

    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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  • Group’s ‘Hot Topics’ are About Working with Autism

    By Toni Lapp

    There have been times that I couldn’t picture my teen-age son Ryan maturing into a responsible adult. When he entered high school he would converse about communism and the Bolshevik revolution to strangers, he had few friends, and he was frequently the target of his peers’ jokes. Seldom did a week go by that I didn’t get the dreaded Parent@School notice apprising me of missed assignments.
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