Last night on CNN, the topic on Larry King Live was Autism. Among the panel of guests were Jason McElwain and Doug Flutie who both shared their perspectives on coping with Autism. A big part of the show turned to the public debate of the impact of childhood vaccines on children later diagnosed with Autism.

I am often asked what Julie and I think about this issue as parents of a child with Autism. It’s impossible to be objective on this subject and I’ll never be close to being a medical or neurological expert, so I just lay out exactly what happened with us.

Up until the age of 18 months John’s social and language skills appeared to be developing close to a typical schedule – he had about a 20 word vocabulary including ‘Mama’, ‘Dada’, ‘hi’, ‘bye’, ‘bus’, ‘plane’, and many others. We can also distinctly remember several occasions of John interacting socially and verbally with those around him. Julie’s most vivid memories of this are at the supermarket checkout line where he would always greet the cashier with an enthusiatic “Hi!” and depart saying “Bye, Bye!” with the diction of a grade schooler. I can remember him standing on our outdoor deck and pointing to the sky and saying “plane” as one flew overhead. We also have video of John at somewhere around 14 months where he’s playing in the tub verbally responding to Mommy’s cues. We rarely play this video because it’s so tough to watch John doing things that he cannot do today – there are no words, and social interaction is absent. Doug Flutie, who went through a similar regression with his son, mirrored our sentiments on Larry King. (Paraphrasing) “It’s like we were getting a glimpse of Dougie’s true personality and it was suddenly taken away”.

John’s communicative abilities began to fade at about 19 months, exactly at the time of his MMR vaccine. Immediately after the vaccine John also exhibited physical signs of an adverse reaction – his cheeks were constantly red, and his face appeared bloated for many days. On top of this his (ex) pediatrician administered the vaccine while John was still recovering from an ear infection and still on antibiotics, which we’ve come to learn is not the best practice to say the least.

So, of course as parents it is this experience that has pretty much defined our position, which is we believe that the MMR contributed to John’s condition. Does this mean that Julie and I have hired an army of lawyers to combat the drug companies because we think John would be typical if not for these events? No. Does it mean that I’ve quit my job and become an expert on childhood vaccines to prove our case? No. Our energy is devoted to making sure John gets the best treatment and therapy for his future.

But, you can damn well bet for sure that John’s 2 and a half year old brother Will has yet to receive this vaccine, and will only do so in separate trials at a much more developed age than 18 months. But that’s just our own (and only) way of letting our past experience regarding this topic affect our decisions going forward.

There is a interesting article in issue 16.03 of Wired Magazine that outlines another autism debate: disorder vs. difference. The article presents both sides of the argument. One supports the common belief that austism is a disorder characterized by abnormal brain development. The other claims the autistic brain is not defective, just different.

The Truth About Autism: Scientists Reconsider What They Think They Know

When I first heard about John’s diagnosis in the Spring of 2005, I knew nothing about autism. Like a lot of folks, my only reference point at the time was the movie Rain Man. Of course I know now, Raymond Babbitt was a dramatized version of an autistic savant and that manifestations of autism cover a wide spectrum. But I talk to folks today and for some that movie is what they think of when they hear the word autism.

The next obvious step was to scour the internet. I was intent on learning more about what John and his family were facing especially since back then we lived 3000 miles away in Redmond, Washington. I found clinical definitions, charity sites, news articles, blogs – a wide range sources and stories none of which gave me a sense of what it was like to raise a child with autism.

There were several memoirs written by parents of children with autism. I’m not sure how I picked it – probably based on reviews – but the first book I read was Susan Senator’s Making Peace With Autism. She is a professional writer and lecturer so it is a well-written account of how autism has affected her life. I believe her son Nat, who has autism, was around 13 at the time the book was written so it covered everything from the initial diagnosis to family dynamics as time passed. Reading it helped me gain perspective. Can you recommend any similarly enlightening books about autism?

Here is an ABC news story on a family in Utah with six kids on the Autism spectrum:

Raising Six Kids With Autism

The chance of having siblings with autism is 15%, so six on the spectrum is extremely rare.

“Boston-based autism researchers have pinpointed a genetic hot spot where DNA errors appear to increase a child’s chances of developing autism one-hundred-fold.” Read the article…