Tuesday, November 06, 2007

An Educator Offers Insights into Families of Kids with Autism

Barbara Firestone is asking some good questions: "What does it mean for a person with an autism spectrum disorder to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences?"

Firestone, the author of a new book called "Autism Heroes," is also offering some insights, based on her listening to and learning from a group of 38 families about their experiences coping with with growing up, going to school, participating (or not) in the community—essentially a collection of concerns that sounds like many of the things that Autism Bulletin readers are thinking about. Besides dignity, other chapters in the book discuss themes like hope, opportunity and love.

I emphasize "sounds like" because the book from Jessica Kingsley Publishers just came out and I have only read brief excerpts. Barbara Firestone is making an author tour on the east coast starting November 11 in New York City with stops in New Jersey, Massachusetts, Pennsylvania and Virginia (more information at the author's book site).

For parents and families of kids with autism, there are so many books coming out that it is challenging to keep up. So why focus attention on this one? Well, the author herself is intriguing: Firestone is president and CEO of The Help Group, a non-profit organization based near Los Angeles in Sherman Oaks, Calif., which runs six day schools for students with autism. She also serves on the California Legislative Blue Ribbon Commission on Autism which recently came out with an important set of recommendations for improving the state's autism services, education and awareness. (For more coverage, see this article.) Someone who is involved in both educating students with autism—a key component to helping individuals grow and develop—who also takes the time to get involved in an important public policy mission offers parents seeking answers and insights the chance to learn something.

Below is a brief excerpt. Firestone asks some good questions, and hints that in some respects, conditions for people with autism are improving:
What does it mean to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences?

Families recount how insensitive, uninformed, and distancing the community can be. When children, who otherwise look normal, have disruptive or unusual behavioral problems in public, strangers can be very unforgiving. Frequently, onlookers attribute the child's behavioral problems to ineffective parenting or to the child being a "bad seed." They often stand to the side rather than help, their faces full of judgment rather than empathy.

Some parents have told me that, although it's difficult for them to admit, they wished at times that if their child had to be disabled, that the disability had taken a more socially acceptable form. Some parents make the decision to fully participate in activities outside the home no matter what the cost; others modify what they will attempt; while others retreat, saying that it's easier to avoid being ostracized. And of late, parents are beginning to tell me that they sense a greater understanding in the community— a more "How can I help?" rather than "What kind of parent are you and what kind of child do you have?"

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