Monday, May 7, 2007

Taking Time for Autism

I would like to take a break from my regularly-scheduled nonsense to talk about something that is extremely important and far more worthy of your attention: autism.

Most of you know that I am a speech-language pathologist (communication therapist, as I prefer to call it) specializing in work with children with autism spectrum disorders. When I am not at work, I continue to learn all I can about the challenges these children and their families face. Late at night, I read a few pages of current books on the subject before falling asleep; I read daily emails from listservs dealing with the disorder (in particular, listservs focused on those using the Floortime intervention technique); I occasionally write for The Family Room, designed to share information with families; I read blogs written by parents with children on the spectrum. I am not "in the trenches" - my children are neurotypical - but I would say that I've claimed a little area alongside the trenches and have been digging for some years now.

I am inspired to post this today for a few reasons:

1) The Cure Autism Now/Autism Speaks WALK NOW Chicago event is coming up in less than two weeks. Matt, the boys, and I will be walking with a team of families and colleagues, the Wiggle Walkers, which has raised over $15,000 to date. Our goal is $20,000. As a family, we have raised $175 and I would like to increase that with your help. Although I do not always agree with the way these organizations portray children on the spectrum (as tragedies), this event raises funds for autism research. And we really, really need more research. You can do it easily online at any time: donate here.

2) I am reading a particularly poignant book on the topic right now. It is called "Mozart and the Whale: An Aspergers Love Story". It is a beautifully-written story of the relationship and marriage of two adults with Aspergers Disorder (often referred to as a "high-functioning" form of autism). This book is worth reading. It is a rare glimpse into the minds of two adults with this disorder and it also chronicles their experiences as undiagnosed children. The pain inflicted on them throughout their lives by others who do not understand them is unbearable to read at times. It doesn't lay blame, per se; after all, their families did not understand them, nor did they understand themselves. They didn't hear of autism or Asperger's until well into adulthood. They were children in a different time. However, it leaves me wishing that humans in general might show more compassion for people we don't understand.

The last book I read was also worth recommending. "The Boy Who Loved Windows: Opening the Heart and Mind of a Boy Threatened with Autism" is written by a mother (who happens to be a writer) whose son was born with significant developmental delays and eventually diagnosed with autism. Her journey to support him in overcoming his challenges is amazing. This is an incredible window into the life of someone parenting a very young child with a more severe form of the disorder. It can give parents great hope for a successful outcome, although I found myself distracted by the tremendous emotional cost to this particular family.

In addition to the fact that these are interesting, well-written books, there is a reason I believe we should all read these books, and that is because there are children and adults all around us who are living with autism. You may have heard the newest estimate that 1 in 150 children is now diagnosed with an autism spectrum disorder. If no one in your immediate or extended family has it, then I can guarantee that you have a neighbor who does. Your child will go to school with children on the spectrum. They will be in swimming class, gymnastics, and summer camp. Being so familiar with the various characteristics of the spectrum, I see children with autism everywhere. You, as a parent - we as a country - are going to need to understand autism in order to intelligently and compassionately talk to our children, interact as part of a community with children on the spectrum and their families, and support appropriate research, education and intervention. These children are intelligent, joyful, and as capable of showing love and affection as you and me. They deserve to be full members of our schools and communities.

3) Last, but highly significant to me, is the point that we as parents of both neurotypical and autistic children have a great deal to offer each other. I don't know how parents of children with autism managed before the Internet; it has become an excellent source of information, support, and networking for parents. And yet there often remains an isolation from parents with neurotypical children. Today I read a compelling post from an excellent writer, MOM-NOS (a play on the diagnosis often given to children on the spectrum: PDD-NOS). Please read it: you'll understand why it moved me to post about this topic. It left me thinking about how much we can all learn from each other and support one another if we open ourselves up to it.

I know most of my readers are parents of young children, and the majority of you have typically developing children. I strongly recommend adding at least one blog written by a parent of a child with special needs to your regular reading; and whether your child has special needs or not, comment and share your ideas and experiences. Please, help to open that dialogue. Here are a few of my favorites, but each of these sites has links to many more: MOM-NOS, The Family Room, and Special Needs Mama.

Also, here are links to a couple of fascinating articles that may interest you:

On the possible link between vaccinations and autism. (Rolling Stone)

On the theory that there is a higher incidence of autism in Silicon Valley due to all those math and science genes. (Wired Magazine)

Read up, my friends. Read, learn, doubt, ask questions. Talk amongst yourselves.

It'll do all of us some good.

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