For many long years I've felt that those of us in the autism community resemble the African-Americans in the 1930s and 1940s who would go to movies filled with white faces and yearn for the moment when one of their own would appear on the screen for even just a fleeting moment. By and large these actors would do nothing more than utter a sarcastic quip or provide some important piece of information, or simply take somebody's coat. It would matter because for a brief moment the members of that community would feel they too were part of the American nation.
I couldn't help but feel a bit of solidarity with those audiences as I sat on the sidelines and heard President Obama says this on April 13, 2011 in regards to the Ryan plan.
It's a vision that says up to 50 million Americans have to lose their health insurance in order for us to reduce the deficit. Who are these 50 million Americans? Many are somebody's grandparents, maybe one of yours, who wouldn't be able to afford nursing home care without Medicaid. Many are poor children. Some are middle-class families who have children with autism or Down's syndrome. Some are kids with disabilities . . . so severe they require 24-hour care. These are the Americans we'd be telling to fend for themselves.
And yet it all sounds so hollow.
Does anybody believe this means President Obama is going to do a single helpful thing for this disease which is striking more than 1 in 100 children and is now twenty times more prevalent than polio ever was in the population?
Now I'm not writing this to tell you who to vote for, but to simply point out how useless politicians seem to be about anything in regards to autism. Remember that kid with autism who scored so many basketball shots in a row and President Bush stopped by to see him? Nice gesture, but who the hell cares?
Maybe I'm just a little punchy because in the past month I've spent two nights in the hospital with my daughter who was having breakthrough seizures, then she got a yeast flare which caused her to be up for several nights in a row walking around the house, or that the new seizure medication seems to be giving her incredible rages.
What does it really cost to make a difference in autism? If the government spent ten million dollars they could answer the question of whether vaccinated kids have a higher rate of autism than unvaccinated kids. Is there some issue more pressing than discovering if we're destroying a generation of children?
Let's think of all the associated problems with autism. There's immune disregulation, increased oxidative stress, increased expression of pro-inflammatory cytokines and chemokines, mitochondrial dysfunction, retained heavy metals, gastro-intestinal issues, increased gut-blood-brain barrier permeability, and chronic active microbial infections suggesting an underlying immune deficiency.
What would all that research cost? Maybe fifty million? Supposedly a child with autism will eventually cost society about three million dollars. That's just a little more than the expected lifetime cost of seventeen of our children. And there are close to a million of them. Let's figure out how to cure our kids rather than paying for a lifetime of care. How's that for a sound fiscal plan?
All of these issues cry out for scientific investigation and yet nobody provides any funds for this research. Instead we get Presidents who stop by to say "Nice shot!" or use us as tools to bludgeon the opposition.
Personally, I'd love it if any politician really took an interest in autism. If I disagreed with every one of their positions, but they did the right thing regarding autism, they'd have my vote. I'm sorry, it's just that important to me.
But if you're just going to use our kids as photo-ops or talking points in some partisan fight all I can say is "Get your damned hands off them!"
Kent Heckenlively is Contributing Editor to Age of Autism