April is Autism Awareness Month. It is also my oldest granddaughters fifth birthday. When she was fifteen months I began researching Autism, because I was concerned that her incessant rocking back and forth (now know that is called stimming) meant something wasn’t right. She had begun to speak when she was twelve months and then a few months later stopped. I later learned that, along with lack of eye contact, regression in speech was an indication of Autism to look for in small children. In the summer of 2007 it took two years to get an appointment with a Childrens Hospital of Philadelphia (CHOP) developmental pediatrician. We got an appointment with a pediatric neurologist who suggested after seeing her that we have a pediatric hearing exam which we did. The examiner suggested we contact Delaware County Intermediate Unit to see if she was eligible for early intervention services. We did and they were great providing three types of therapy in the home. We were lucky enough to get an appointment with a developmental pediatrician in Camden NJ by the time my granddaughter was 19 months old. She was diagnosed as PDD-NOS pervasive developmental disorder -not otherwise specified; a diagnosis that accounts for 90% of the children on the Autism Spectrum. ; the remaining 10% having one of 5 more specific diagnoses.
Then began my daughters’ journey on the Internet and in books learning everything she could about Autism Spectrum Disorders and PDD-NOS. Now that 1 in 110 children are affected by ASD there is a wealth of information on possible causes, cures, therapies etc. It seems to be clear that most cases are somehow different and there is no one fits all solution. We don’t know the causes - to what extent do environmental factors cause or trigger inherited tendencies; can mercury or aluminum in vaccines trigger some toddlers’ gastrointestinal problems then affect development; is the vaccine question one not of the vaccinations but of the number of vaccinations (often more than 12 in the first year of a baby’s life). Empirical evidence would suggest that in some cases, e.g. my granddaughter, diet can play a factor - she is now on a gluten free, casein free, soy free diet and no one except a trained developmental pediatrician would even see signs of ASD.
Now when Autism is a worldwide epidemic and some progress is being made comes the Great Recession and the right wing attempt to cut government programs at the federal and state level. The research that is being done including major studies of genetic factors in autism (including replicating Autism symptoms in mice using a one gene mutation) is a result of government funding. Twenty-five states have mandated that health insurance sold in these states must offer coverage for Autism related therapies. Yet all this and more is threatened. The efforts to cut Medicaid will also affect long term community services for those children and support services at home and at school as well as supported employment when these children age into the workforce.
Some in the government get it. In 2006 Congress passed and the President signed the Combating Autism Act of 2006 which provided funding for Autism research and created the Interagency Autism Coordinating Committee. That historic act sunsets on Sept 30 of this year. Readoption of that Act is critical to maintaining the progress made so far in combating this epidemic. Over 130 members of Congress from both Houses and both Parties have formed a Congressional Coalition for Autism Research and Education but that leaves 405 others who need to be educated on this.
We were lucky we realized what was happening early and got early intervention. Today major studies are concluding that screening for ASD in toddlers as young as 18 months is doable and valuable.
The childhood epidemic of my generation was polio. We are a great nation and we eradicated polio, often with government funded community clinics that distributed both types of vaccine. We cannot let a Great Recession and the national debt crisis consign an entire generation to what this ASD epidemic can do to them for their entire lives. We are so close to coming up with the answers and to helping those who are on the Autism Spectrum; and possibly even finding a way to prevent that 1% from becoming 5%.
Eradicating polio in the 1950's was not an Eisenhower initiative nor was it a political matter - it was a matter of public health and the entire nation united behind accomplishing it. So the same can be with Autism. I had the honor of speaking personally to then Sen. Obama about Autism when he visited Wallingford in 2008. He then made some commitments that he has kept. But this should not be an Obama budget initiative nor a Ryan Republican budget alternative. This is a matter of human decency and the decency of Americans to help all those little children who unlike my granddaughter may have parents who may not recognize the signs of Autism.
[For more information on Autism Spectrum Disorders see the website of the Autism Society of America www.autism-society.org]
4-8-2011
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