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The burdens and joy of autism families

autism heroes.jpgI stopped by Barnes & Noble in Fresno on Saturday afternoon to hear author Barbara Firestone discuss her book, "Autism Heroes." Unlike a lot of authors, Dr. Firestone wasn't there just to sell books. She was on a mission to shine light on the struggles of children with autism and their families.

Most in the audience showed up because they're parents or grandparents of children with autism. There was a lot of pain in that room, as they explained how the system wasn't giving the children they love the care they deserved. The public schools didn't want to deal with their problems, the insurance companies wanted to duck their responsibility, their neighbors didn't understand why they couldn't control their children..

Dr. Firestone spent much of her time Saturday listening to the family members tell of problems in getting basic education and health needs met. Some of the questions were complicated and she said she'd talk to those parents privately. She has learned patience in dealing with families with children who have autism.

I was one of the few in the audience without a personal connection to autism. I went out of curiosity because my daughter is volunteering in a research lab at UC San Diego, where she is an undergraduate student. Researchers in the UCSD baby lab are studying autism, and looking for protocols leadng to early diagnosis. That would allow for better treatment of children diagnosed with autism spectrum disorders. My daughter has been telling me about the research, and I wanted to learn more about autism. The book signing in Fresno was a wonderful opportunity for me to hear first-hand about this subject.

Dr. Firestone is president and CEO of The Help Group, which is a nonprofit that serves children with special needs related to autism, Asperger's Disorder, learning disabilities, attention-deficit/hyperactivity disorder, mental retardation, abuse and emotional problems. She is vice chair of the California Legislative Blue Ribbon Commission on Autism.

Her book, "Autism Heroes," recounts the experiences of 38 families and how they have dealt with autism.

Representatives of Families for Effective Autism Treatment of Fresno/Madera County also attended the lecture and book signing. This is an important local advocacy group.

Firestone said autism spectrum disorders are a public health crisis affecting one in every 150 children, mostly boys. The Legislative Blue Ribbon Commission is supporting a package of eight bills to improve autism treatment in California. Firestone is urging autism families to write California senators and Assembly members asking them to vote for the bills.

Comments

Autism along with other disorders are very difficult to deal with and they should be given an education the same as anyone else. When they are taught, worked with and loved they can be functioning human beings. They just need a chance. The families need support as well and can be a very real help to their children if they have support.

I also was at the book signing. It never ceases to amaze me that no matter where I go I meet families that have children with autism for the first time. The faces are different but the stories of struggles to get services or education for the children with autism remain the same. The cries for help are often accompnied by anger over the fight to get help for their precious children with autism.

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