SPECTRUM CONNECTION

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 whose older siblings shared advice.

Reading the newly published “Middle School: The Stuff Nobody Tells You About,” I’m reminded of what a jarring change the shift to middle school can be for girls — on and off the spectrum. However, girls on the spectrum are at a natural disadvantage because they often do not have the social circles — and hence, the information shared in these networks — that typical kids have.

Adolescent girls on the spectrum need all the information they can get, and local publisher Autism Asperger Publishing Co. (AAPC) serves it up in this book, written and illustrated by Haley Moss, who at 15, surely knows the material well. Indeed, she tells of attending three different middle schools, switching schools between 6th and 7th grades and 7th and 8th grades.

The author writes with brutal honesty, which any person on the spectrum will appreciate: “The ‘friendship front’ isn’t good for me at all times because of constantly changing friends,” she tells the reader at the outset. Each chapter features advice from her on the selected topic (example: good habits before school starts, changing classes, lockers, and so forth) as well as a teacher’s perspective and advice from other girls on the spectrum.

Here’s a sampling of Haley’s advice:

* On hallway etiquette: “On the way to class, there may be kids who bang into you in the hall. Try to stay cool and don’t hit or push back. In most cases, this is an accident, as the hallways and walkways are crowded with kids rushing to and from classes.”

* On showing off knowledge in class: “Sometimes it is best not to raise your hand at all, even if you know every answer.”

* On friendships: “In addition to friends and acquaintances, there are ‘frenemies.’ These are people who may pretend to be your friends but are mean and talk about you behind your back.”

Haley describes her first day at a new school with great detail, referring to a seatmate from one class as “World History Girl,” and telling of her relief that the girl finds her at lunch. “I don’t know if I can pull this social stuff off,” she writes. “I tend to be shy and a loner, and she is very shy and very self-confident.”

While boys can relate to many aspects of the book, it is intended for girls. Haley talks about the need to keep spare change handy to purchase sanitary napkins, for instance. She also talks of the importance of looking fashionable, so other girls will be nice (and refers more than once to the movie “Mean Girls” as being instructive).

I initially found Haley’s anime-inspired cover illustration to be somewhat out of sync with the topic, until I read in the preface that her mother first told her she had autism by telling her she had magical powers. Indeed, those reading her work may agree.

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 daughter Ryan Elizabeth Peete. Filled with bold, colorful pictures, the book is a visual delight, illustrated by Kansas City artist Shane Evans. It features a simple narrative in which a sister describes life with her twin brother who has autism. In Peete’s family, Ryan Elizabeth’s twin brother RJ has autism; the story is described as a work of fiction, but the story line follows events from the young author’s life — like when she hurts herself and her brother rushes to comfort her and expresses his love for her in words for the first time.

So is it worth the $16.99 cover price? The book certainly has lined up its share of celebrity endorsements, from Bill Cosby to Jason McElwain of hoops fame. It is an enjoyable read, and will no doubt be invaluable for young readers first grappling with the idea that their family is “special.”

For a book that will appeal to older children, look for Scholastic’s 2006 “Rules,” a Newbery award winner. Author Cynthia Lord, mother of two — one with, one without autism — said she was inspired to write the book when her daughter came home from school and asked “How come I never see families like mine in books and on TV?” Lord no doubt drew on her family experiences in writing the story, told from the point of view of 12-year-old Catherine, whose family seemingly revolves around her autistic brother.

Deemed “pretty good” by my 17-year-old son with Asperger’s (that’s high praise from him, actually), the book is now in paperback and offers an author interview and bonus games at the end.

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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Click here to download a brochure for this summer camp developed to teach empowerment skills to children 10- to 14-years-old.

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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JUNE 12. A fun-filled evening begins at 5 p.m. with a $5 all-you-can-eat taco dinner. Chinese auction starts at 7 p.m. At the Grand Elks Lodge, 13600 Arrington, Grandview, Mo. For more information, contact Cheryl Heller at 816-529-7741 or Tom Heller at 816-824-3572.

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 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 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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