We live in a town of 14,000 people and when I read that the autism rate was one in 10,000, I figured that it was unlikely that I would ever find another parent with an autistic child.
Although I taught school for eight years before I was married, I had never heard of a student with autism. This of course was all in the days before the invention of the really big lie, when the truth was still discussed about autism affecting only a small number of kids.
After what seemed a very long stay in grade school, where no professionals had any training or experience with handling kids with autism, starting in the fourth grade, I home schooled John.
Those were the good years. He learned at his own pace. Being a teacher myself, I designed a curriculum that he could work with. Some things he could do with no help, others were like a hopeless mystery.
John took piano, and we were all in 4-H and belonged to a home school social group. We took vacations and John had a paper route, but he was still pretty unresponsive when he was around strangers and he didn't like to go to public places.
When John was fifteen, everything changed. I found a doctor who specialized in developmental disorders. I wanted to learn how to get John to interact more with people.
This was when I got the shock of my life. In the eight years since John's original diagnosis at seven-years-old, the rates for kids with autism had exploded. Suddenly, doctors and educators knew about autism. Kids with autism were everywhere. The doctor's assistant even had two autistic sons of her own.
In fact, I learned that now there was a whole spectrum of autistic disorders and John's was called Asperger's Syndrome.
I'm pretty sure that this was when I was told the really big lie for the first time---that all of the autistic kids were the result of "greater awareness and better diagnosing," and that autistic children used to just "fall through the cracks" or were labeled with other disorders.
It didn't make much sense, but at least I had a lot of company now.
John's doctor had us combing through our family tree trying to find our "autistic relatives" that were labeled with something besides autism. This was also when I first heard of the "autism gene" supposedly responsible for this "inherited condition."
When I was first told that John had Asperger's Syndrome it was such a rush of relief because I assumed that there would be people to help John and school programs for kids like John that were not available when he was diagnosed eight years earlier.
This is when I realized that the really big lie was just that, a really big lie. There was a huge disconnect between the really big lie and the reality of services. If these kids had been always been around, what had the schools done with them?
I mean, it's impossible to ignore a child with autism, they must have had something for them. I was one of the original members of an Asperger's Syndrome parent group at a local hospital and I met so many people just like me struggling with children and nowhere to turn to.
When I first started hearing about the rise in autism cases, I knew immediately that John and others like him were just the tip of a very large iceberg hidden underwater for the moment but not for long.
The one thing that scares me more than anything else in life is wondering what will happen to these kids once they are adults if we can't even provide for them in schools as kids.
Although I taught school for eight years before I was married, I had never heard of a student with autism. This of course was all in the days before the invention of the really big lie, when the truth was still discussed about autism affecting only a small number of kids.
After what seemed a very long stay in grade school, where no professionals had any training or experience with handling kids with autism, starting in the fourth grade, I home schooled John.
Those were the good years. He learned at his own pace. Being a teacher myself, I designed a curriculum that he could work with. Some things he could do with no help, others were like a hopeless mystery.
When John was fifteen, everything changed. I found a doctor who specialized in developmental disorders. I wanted to learn how to get John to interact more with people.
This was when I got the shock of my life. In the eight years since John's original diagnosis at seven-years-old, the rates for kids with autism had exploded. Suddenly, doctors and educators knew about autism. Kids with autism were everywhere. The doctor's assistant even had two autistic sons of her own.
In fact, I learned that now there was a whole spectrum of autistic disorders and John's was called Asperger's Syndrome.
I'm pretty sure that this was when I was told the really big lie for the first time---that all of the autistic kids were the result of "greater awareness and better diagnosing," and that autistic children used to just "fall through the cracks" or were labeled with other disorders.
It didn't make much sense, but at least I had a lot of company now.
John's doctor had us combing through our family tree trying to find our "autistic relatives" that were labeled with something besides autism. This was also when I first heard of the "autism gene" supposedly responsible for this "inherited condition."
When I was first told that John had Asperger's Syndrome it was such a rush of relief because I assumed that there would be people to help John and school programs for kids like John that were not available when he was diagnosed eight years earlier.
This is when I realized that the really big lie was just that, a really big lie. There was a huge disconnect between the really big lie and the reality of services. If these kids had been always been around, what had the schools done with them?
I mean, it's impossible to ignore a child with autism, they must have had something for them. I was one of the original members of an Asperger's Syndrome parent group at a local hospital and I met so many people just like me struggling with children and nowhere to turn to.
When I first started hearing about the rise in autism cases, I knew immediately that John and others like him were just the tip of a very large iceberg hidden underwater for the moment but not for long.
The one thing that scares me more than anything else in life is wondering what will happen to these kids once they are adults if we can't even provide for them in schools as kids.
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