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April 2nd is World Autism Awareness Day.
Yes, just one day devoted to building autism awareness around the world. As the mother to two boys—the oldest being on the spectrum—I consider myself an expert on autism. I'm not an expert on all the studies, treatments or research or the hows and whys of autism but an expert on the real world of autism. I spend a great deal of my time shadowing my adult son. I plan practically all of his daily activities so he can venture out into the community successfully. I'm basically in a constant state of micromanaging when it comes to my son's life. It can be overwhelming at times but I do have a very supportive husband who carries his fair share and we receive respite with our wonderful trio of personal support workers.
But...
When it comes to autism, I fear that I'm less of an activist in the autism community and more of an advocate for my son. When time permits, I try to be involved in the autism community, (I admin the @AutismOntLdn Twitter account and run a Facebook Group Autism Optimism), but a recent US report by the US CDC has ignited the activist in me. In the last decade their research has reported an increase from 1 in 155 to 1 in 88 cases of children diagnosed with autism. In Canada, the results from a McGill study in 2006 reported a similar ratio of 1 in 154 children with an autism spectrum disorder so the same increase can be inferred. With this dramatic increase in autism one would hope that more funding and programs would follow the obvious demand for services. The real truth in Canada is that funding is being cut to services and programs are being slashed left, right and centre. Schools have their hands full and families are missing out on services and this leads to very little hope for the future of individuals with autism. This should be a growing concern for us all and not just families that are dealing with autism.
Children with autism grow up to be adults with autism. Every child with autism should be given the opportunity and resources to develop his or her skills, be intergrated into society and live an independent life if it's possible to do so. If we keep cutting programs and funding what will the future be for individuals on the spectrum? Just a little something for us all to ponder as the cuts go deeper while the number of cases increase.
Since I run a blog about books, I can't resist the awesome opportunity to highlight a few books on the topic of autism. I hope that these books can be part of building autism awareness in the population in general and help family members, caregivers, and friends of people with autism.
Be Different by John Elder Robison
John Elder Robinson was diagnosed with Aspergers at the age of 40. He managed his difficult childhood at a time when the word autism didn't even exist. He learned to cope with his challenges and developed skills to function "normally" to lead a successful life. His book cover states, My Adventures with Asperger's and My Advice for Fellow Aspergerians, Misfits, Families, and Teachers. He shares tips on how to deal with bullies, and why social skills like manners matter. Robison is the author of the bestselling memoir "Look Me In The Eye" and the older brother (and frequent subject) of the bestselling Running With Sissors author, Augusten Burroughs. You can read my earlier blog post Vive La Difference written for Be Different's hardcover release and read an excerpt from Be Different.