NOTE: Seems like since Mrs. Wright's death last year, Autism Speaks has changed its mission from "It's time to listen," to "It's time to give up." What a sin. Let's live with autism. Cancer. Alzheimers. Diabetes. MD. Raise money and live with it. Disgusting in the extreme.
By Ginger Taylor, MS
Just saw a new Autism Speaks commercial. The message...
"Learn to live with it."
I kid you not.
(Let's just skip past the horrid imagery of a child with autism on a boat in the water with no supervision for the sake of time and trauma.)
For the few people who don't see a problem with this or understand why so many of us are so angry, please contrast compare two possible positions here. The first has been espoused by our community for more than a decade, the second is espoused by Autism Speaks.
1. Autism is preventable and medically treatable.
2. Autism, learn to live with it.
The first is accurate and appropriate, as there are medical treatments for people diagnosed with autism that will alleviate the symptoms of autism (some of which are life threatening... re: children in a boat in the water with no supervision). This will make their lives better without them having to spend hours and weeks and years combating a terribly debilitating condition. If there is medical treatment available for a debilitating condition, is ethical to tell people that there is medical treatment available for their debilitating condition.
This is made all the more important, as an autism diagnosis cuts life expectancy IN HALF.
The second is a sadistic, self-serving position, held by Autism Speaks and their funders, that leaves the burden on the child. Yes we could work to relieve the burden on the child via medical interventions based on 20 plus years of research and treatment, but have decided to withhold the information that his burden can be lifted, even in part, and simply make him work to "learn to live with it better."
While being fine with the fact that his life expectancy is now the age of 36.
I hold that the second position is evil.
And Autism Speaks used a child with autism to deliver this message, which is just slimy.
If this child was able to participate in informed consent, and was offered three years of ABA (to the tune of hundreds of thousands of dollars), or a treatment for brain inflammation (costing even as much as 25,000) that would take up about a month of his time, each having the likelihood that they would give him the same amount of "progress," in functioning in society, which do you think he would choose?
What other medical syndromes do we expect people to, "learn to live with," even though there are proven medical interventions for them and that result in the abatement of their symptoms?
"Sorry, Grandma, there are medical interventions that help people recover from stroke, and your broken leg that happened in your fall due to your stroke, but we feel the stroke was naturally occurring, and is now a part of your identity, so we are simply going to teach you how to learn to live with it better. So no meds, surgery or cast for you. Get yourself to physical therapy now. Because early intervention is crutial."
It has been widely circulated that since last year, Autism Speaks has ended their participation in the pursuit of treatment research. That the line item has been deleted from their mission, and they are now just another group that advocates for support services for autism (quite a lucrative business these days.) This commercial confirmed that for me.