Matthew's Puzzle - Autism Recovery, Gluten Free, Green Living Mom Blog

If you are reading my blog you are probably pretty aware of autism already, but I figured I’d pass along a few tidbits of information just incase.

1 in 110 children have autism in the US, 1 in 70 boys

Every 15 Minutes a new case is diagnosed

It can cost up to $3.2 million to raise a child with autism

Autism is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined

Autism is the fastest growing serious developmental disability in the US

Children with Autism have greater rates of Gastrointestinal, sleep, immunological and seizure disorders

Autism prevalence figures are growing

Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade

Autism receives less than 5% of the research funding of many less prevalent childhood diseases

Boys are four times more likely than girls to have autism

There is no medical detection for autism

Because autism is a spectrum disorder children with autism may range from the mildly effected to severely afflicted. Some children are non-verbal while others may talk quite well. The children “look” like normally developing children and often their disorder is thought to be bad behavior or poor parenting by the unknowing public. Often they have additional problems and disorders which make life even more challenging such as hypotonia, sensory processing disorder, OCDs, Tourettes Syndrome, Tuberous sclerosis, Anxiety, bi-polar and bowel disease. Many ASD children are considered elopers, which means they may wander off. A Danish study in 2008 found that the mortality rate in the autism population is twice as high as the general population. Many of these seats were attributed to drowning associated with the individual having wandered off.

When I read the statistics above, especially the 1 in 70 boys will be diagnosed with autism statistic, I often think of the Howie Mandel show Deal or No Deal. I imagine myself with a metal briefcase standing next to Howie and we have gone through a few cases already, 30 to be exact. Howie taps my case and asks me if I believe my case hold the autism or not? On the real TV show the contestants really have nothing to lose and very much to gain, but in my little game I’m not playing for money, I’m playing with my son’s future. Unfortunately for Matthew my case did contain the autism. Howie did not give me a congratulatory fist bump and the pretty models didn’t smile, opening their cases to reveal better choices. No, instead we got OT and PT, special diets and special education, and a child that tells me “Mommy, I don’t want autism. I don’t want to be different.”

I hope you are aware of autism. But more than that I hope you will help make a change. I hope you will demand better for our children before this epidemic effects 1 in 50 children, even before it effects 1 in 80. Really, if we have a show were people can win $1 million simply by choosing the right box out of 100 that should show you just how dire autism really is! Stay we..

I’m totally furious with the posts I’m seeing on the Internet saying that James Durbin doesn’t have autism because he seems so “normal”. How dare these people judge this man simply because he doesn’t look like he has classic autism? Would anyone dare to tell a woman with stage 1 breast cancer that she doesn’t really have cancer since her’s was caught before stage 4? Or that some one isn’t really pregnant since she hasn’t reached her 3rd trimester? Of course not! And who are these experts who watch James on a popular TV show and can diagnose him without spending time with him and knowing the actual criteria for developing a diagnosis? When Matthew was diagnosed it took several hours of intense testing and review of his developmental history, not one or two hours a week where he wasn’t even the main “character” and didn’t appear on screen the whole time. This lack of understanding is very frustrating particularly for me because my son too, is very high functioning.

Many times people have looked at Matthew’s autistic behaviors and assumed that he is just misbehaving or being “bad”. Sometimes they just call him weird. His autism effects every level of his life from his body’s ability to balance itself and to handle simple, normal stimuli to his hand flapping and different cognitive processing. Yes, he looks great and he is getting better ( often due to biomedical interventions), but my son still needs an IEP at school. He still needs OT and Speech therapy. He still has problems following directions and can become scared of things “normal” children find exhilarating.

Do I judge James? Heck no! I’m rooting for him to win, because I see Matthew, all grown up, every single time James takes the stage. I hope my son has his confidence and swagger when he is in his twenties.

Stay well!