Taming the Stigma of Autism

Taming the Stigma of Autism

This year, more children will be diagnosed with autism spectrum disorders (ASD) than with childhood cancer, diabetes, and pediatric AIDS combined.

There is good news, however, according to Dr. Barbara Firestone, President & CEO of The Help Group, a non-profit organization dedicated to serving children with a wide range of special needs. “Research is already showing promise in the area of early identification and early intervention,” she says, “with current research revealing that autism can now be reliably detected as early as 18 months and intensive early intervention can result in significant positive outcomes for many children some of the early warning signs are recognizable within the first year of life.”

However, whereas the research is off to a running start and awareness is improving, there is a serious and immediate need for some help. Families who suspect their child may be developing differently or who have just been diagnosed with an autism spectrum disorder often times feel alone, confused, and unsure of where to turn. They now live in a world where their family is “different,” with special requirements that can many times make it difficult to fully integrate into their social group, further perpetuating feelings of isolation. Granted there are support groups for parents and siblings of children with autism, but not yet as many as needed to meet the growing need, and Dr. Firestone has taken it upon herself to try to provide a sense of community, support and hope for families across the country in the form of a book, Autism Heroes: Portraits of Families Meeting the Challenge, a compelling and sensitive account of the experiences of 38 families living with autism. The following is an excerpt from her book*:

“Mary Cole knows that she has high functioning autism. Her parents, actors Teddi and Gary Cole, made the decision to tell Mary, their family, friends and community about her autism and to speak freely about it. They believe that this candor will not only prevent stigma for Mary but will also contribute to reducing the stigma for others.

Teddi: “When Mary was first diagnosed, people said to us, “Don’t use the A word.” That seemed to make sense: we wouldn’t want her to know that she had autism. But that’s sort of treating it like the Scarlet Letter. It’s not the Scarlet Letter. It’s not a label; it’s a diagnosis. When you have a diagnosis, you know where to go, what to do, how to work with whatever IT is. Gary and I made a decision early on: we’ve talked openly in our house about autism for as long as I can remember. Mary knows she has autism. She knows that she’s had a harder time doing things socially than other kids. So we felt that to pretend, not to call it by its name, would in the long run be harder for her and for us.”

A sense of community has never been more important for everyone in this country, let alone those facing a family medical challenge. If you’d like more information, please visit www.thehelpgroup.org. All book royalties are being donated to The Help Group in support of its efforts on behalf of children with autism spectrum disorders and their families.

*Excerpts from Autism Heroes: Portraits of Families Meeting the Challenge are reprinted by permission of Dr. Barbara Firestone and Jessica Kingsley Publishers and may not be reproduced or reprinted without their permission.

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