Special Autism Post: Why I Won’t Light it Up Blue

Once again, let me welcome you all to Autism Awareness Month.  This weekend, millions of people across the country are going to be supporting an Autism Walk, and this month, thousands are “Lighting It Up Blue,” putting up a blue light to support loved ones with autism.  This campaign, promoted by Autism Speaks (AS), is one I won’t be participating in, and here’s why: I cannot support this organization and its treatment of autism as a health concern. Here are some reasons why you should reconsider supporting AS.

Autism Awareness Campaign, or Image Management?
In 2005, Autism Speaks had an ad campaign called “Autism Everyday” that focused on how having a child with autism destroys families and lives. It included a mother claiming she’d considered driving herself and her child off a bridge…and in fact, shortly thereafter, a mother murdered her autistic adult child and herself. The Autistic Self-Advocacy Network (ASAN, another group I don’t support) does not in any way support AS, and thinks you shouldn’t either, thanks to AS’s fear-mongering, stereotyping, and what they see as an attempt to “cure” or abolish the autistic community. That’s right, adults with autism DON’T support Autism Speaks.  That alone made me step up and reconsider this group, but the “Light it Up Blue” campaign, to me, sounds like an attempt to recoup this image. NOW, they claim autism is a wonderful blessing to celebrate. Jeez, people, make up your minds… And this perspective change took 7 years? What, so they could save up to hire the image consultant? Which brings me to…

It’s All in the Numbers
First of all, you may be aware that the CDC  released autism rates of 1 in 88 for all children, and 1 in 54 for boys, in 2012. What you may not know is that those rates of autism come from 8-year-olds studied in 2008.  What you may also not know is that the rate of autism for the prior 20 years was on an average increase of roughly 13% per year.  If you keep that number steadily rising by the average, that would mean a 1 in 29 rate for kids currently aged three years old.  (Note that it is MUCH higher for the children with Down syndrome, higher even than for boys.  Here are some figures -39% of kids with DS in this sampling have Autism.)  On 4/1/12, I saw Sanjay Gupta himself on CNN saying that a 78% increase in a decade could not solely be caused by genetics.  OK, yes, I have heard the argument, “It’s a 78% increase in DIAGNOSIS, not autism.” Well, ok, not to worry, the APA is removing about half of those diagnoses, and completely eliminating Asperger’s by changing the standards.  Problem. Solved.  And screw* you if you think your kid still has autism, it’s just ODD or ADHD and here’s a lifelong script for you. Or maybe he’s just a Problem Child, and better off in juvenile detention

When I googled AS, I discovered this: “Workshop on US Data to Evaluate Changes in the Prevalence of Autism Spectrum Disorders”.  Seriously?  Do we need a  workshop on this?  We can’t just think and study outside the frakking* box?  There is ALREADY funding and studies to support biomedical research, why don’t we just continue down that road? But wasteful spending and where your donation goes is another part of the problem…

Where Does the Money Go?
A few decades back, a major charity that I supported out of a paycheck deduction suffered big time when accounts for that charity were mismanaged.  I stopped supporting charities until I found ones that I trusted or were referred to by trusted friends, like MercyCorps.  So, when you give to an organization, you need to follow the money.  Does it go to worthwhile causes?  Line CEO pockets?  Help the people it purports to support? Get spent in marketing?

For AS, roughly half their budget goes to research.  I’ve seen 65%, I’ve seen 44%.  The rest allegedly goes to “awareness”…and I’m sure a sizable chunk for that shiny new blue light campaign.  Consider this: Founded in 2005, it’s a top financial charity.  Just 3 years later, their top earner earned over $660,000.  (Wow.  Maybe I should start a charity, I could use some upgrades on my house.**) That fee went to their Chief Science Officer, Geri Dawson, and you can read some interesting background and commentary on her over at Age of Autism. (Note: it ain’t pretty.)

You should also know that AS is heavily tied into the CDC, who are adamant that vaccines and autism have nothing at all to do with each other, despite the fact that no studies even exist on combining the chemicals to multi-strain single dose shots.  Nor are there any studies on unvaccinated children and autism rates.  A study was done relating that thimerosal, a form of mercury that used to be placed in vaccines, does not cause autism, and then, for some mysterious reason, this “harmless” chemical was removed from vaccines.  For more on this, Google the Hannah Poling case.  (OH, and keep in mind it was the CDC back in the 50’s that declared cigarette smoking was safe.  If you think they cannot be affected by lobbyists and financing, think again.)

Their Own Daughter Disagrees, and Now the Founders are Wavering
Autism Speaks was started by a couple as a response to their grandson’s autism.  That mother, Katie Wright, now believes that vaccines contributed to her son’s autism, even though the CDC would have us think otherwise.  I’ve read that in the past, the parents and the daughter feuded over this, but after listening to the 4-part video interview below with Ms. Wright, it seems clear that her parents have little to do with the scientific advisory board anymore and do think environmental research needs to be done.  Much of the grant funding for AS, though, comes from organizations vested in the pro-vaccine side of the debate, although there seems to be a glacial move towards new funding and ideas.  The board itself is old school, and that too is holding up the process.  (I remember when we took Zoe to the local, highly touted autism doctor who scoffed at the idea of a gluten-free diet.  She was about 70, with a wall full of credentials.  Old School for sure.)  That leads me to the conclusion that AS is still putting its research funding in more of the same old research, and less into productive, cutting-edge or new research. AS is still heavily tied to the CDC, who I believe has too much vested with the pharmaceutical industry, the organization that keep trying to convince all of us that unlimited vaccinations are perfectly, completely, and utterly harmless and if you don’t agree you’re a stupid mom, or a slut, or both.

AS Does Nothing for the Autistic Community
I’ve heard the grants that AS does give to families about as accessible as winning the lottery.  I visited their website and while their list of resources seems long, I only saw one grant that seems to be their own. (Please correct me if I am wrong.)   When you consider that at a single gala even this year, AS raised more 1.3 million dollars, you’d think they’d have more than a single grant to offer.  This does not look like supporting kids with autism – it’s more about a scientific approach, and if their partners weren’t questionable and close-minded, I wouldn’t have a problem with that at all.  In my opinion, you’d do better to offer help to a family in need.

Now here’s the thing.  It’s not for me to call whether or not you should support this group.  This is my opinion, based on my research and the well-informed opinions of others, and for me, I think my money is better spent elsewhere.

How CAN You Support Autism Families?
If you’re convinced and you still want to help families like mine, here are some things you can do instead of walking.  Meet and befriend a family who lives with autism.  Learn about what the disability means to them (it’s vastly different for everyone), and see where and how you can help them.  For me, I’d love child care, housekeepers and lots of gluten-free goodies.  Most parents would probably like time, a cup of coffee or a beer, and a good strong, listening ear.  They want you to see the amazing person inside their child. Autism doesn’t mean a kid can’t shine, you just have to know how to reach them, and that takes time, patience, and perhaps a bit of silence.

You can also help by assuming that tantruming kid in the store or restaurant is screaming in pain that you and I cannot feel rather than accusing moms and dads you don’t know of “bad parenting”. There is a very good chance nowadays that that child has autism and his or her brain works completely differently than yours and mine. Maybe throw the next beleaguered parent you see a smile and do a random act of kindness for him or her.

As autism continues to rise in our children, those of us who raise these awesome, struggling kids need the rest of you to embrace and support us.  They are our future.

Part 1 of Katie Wright’s 4 Part Interview (find the rest on YouTube):

 

Originally posted April 16, 2012