The National Autism Association has officially named September 9 "How Much Longer Day." On that day, they are encouraging parents and other members of the autism community to get in touch with their federal representatives in support of a whole raft of issues in areas including health care, education, insurance, and more.
The National Autism Association, for those who don't know, has a mission that states they will "...educate society that autism is not a lifelong incurable genetic disorder but one that is biomedically definable and treatable. We will raise public and professional awareness of environmental toxins as causative factors in neurological damage that often results in an autism or related diagnosis."
Their mission places the NAA at odds with most mainstream autism-related organizations and researchers. But for the NAA, the mission statement is just a start.
For the past few weeks, the NAA has been distributing dramatic, passionately written missives in VERY LARGE FONT, addressed to a variety of institutions and individuals, ranging from the CDC to President Obama. Each message includes the words "How Much Longer?," and each addresses a different cause related to the NAA's concerns.
It's tough to argue with some of the NAA's concerns. For example, they're concerned with seeing insurance cover treatments for autism. They want to see the educational system address abuses against children with special needs. They're interested in seeing the safest possible vaccine schedule for infants and young children.
It's hard to imagine any sane person arguing with these concerns.
On the other hand, the NAA's science has something to be desired ("we all have two eyes and a brain and we used them in combination to determine that our children were speaking before vaccines and but then stopped speaking afterwards" isn't precisely iron-clad proof of a causal link between autism and vaccines).
And their style of presentation may not be everyone's cup of tea. It certainly isn't mine.
For example, in one message they accuse the American Academy of Pediatrics of "promoting an antiquated mindset that stifles our children’s potential to be healthy."
In their piece addressed to the CDC, you state: "WE’RE ANTI-BS AND YOU’RE PRO-SEE-HOW-MANY-PEOPLE-WILL-KEEP-BUYING-IT?" (caps theirs, not mine).
To Tom Insel of the NIH, they say: "Dr. Insel, your job should go to someone else who has the courage to seek those answers."
I have no doubt that the NAA is sincerely passionate, truly angry, and, in the words of the movie Network, they're mad as hell and they're not going to take it anymore. And I'm sure many readers will feel that personal accusations of cowardice and deceit are the best way to make an impact on federal policy.
Personally, however, I've been impressed by the fact that many states are already requiring insurance coverage for kids with autism -- as the result of negotiations with organizations of parents and professionals who are able and willing to work through the process. I've seen solid improvements in public understanding of autism, and far greater willingness to support and accept families living with autism. These changes have been coming about even as parents such as those involved with the NAA campaign grow angrier.
Granted we have a long, long way to go before people with autism -or any developmental or mental disability - are fully accepted, supported, and valued. There are abuses, there is neglect, and these issues must be confronted and addressed.
But it's hard for me to believe that a kick in the teeth will motivate anyone -- even Tom Insel -- to positive action.
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