Where is research money in the name of autism going?
September 25, 2006 by Kristina Chew, PhD
Filed under Health
With the big money going to basic research into the causes of autism, some on the front lines — those who work with children and adults who have autism — are frustrated.
Notes reporter Lindy Washburn in today’s Bergen Record, Unraveling autism’s mystery. The article is the second in a week-long series.
Indeed: So much funding is devoted to finding out why a child became autistic in utero or as a toddler—-when what we need to do is think about how best to help the autistic children and autistic individuals in our lives today, as old and young as they are, to acheive their full potential now and tomorrow.
“It’s wonderful to understand ‘why,’ ” says John Brown, director of the REED Academy, a small independent school in Garfield for children with autism. “But it’s more important to do something about it. The research questions important to me are about how to help kids who have this and how to help adults who have it.”
I think finding the causes is very important because it will definitely help us in finding treatments for these children. Money spent on research is put into much better use in my opinion than money spent at ABA for $100 an hour.
Danya, thanks for commenting here. Do you have an autistic child?
Yes. My son Danya is 3 years old and was dxed with autism at 26 months. I personally believe with a fraction of the money spent annually on autism by school districts across the country, some kind of treatment or prevention could have been found years ago, both of which would benefit children who are already autistic. But of course first the causes of autism have to identified.
Both are equally important in my opinion-Research on
1.the cause of autism and
2.better ways and strategies to support, manage individuals who have autism today.
There should be a right balance and both the efforts should happen parallely.
If you’re paying $100 an hour for ABA then you’re paying way more than you ought.
Then again, apparently Canada sucks at paying therapists properly, so what do I know?
Regardless, I would rather see money going towards appropriate supports for adults and older children. (And I don’t say that because I’d get the money; I only work part-time as a respite caregiver now.)
While research into cause is interesting and could be helpful in developing appropriate supports, I don’t think that prevention is necessarily the way to go.
Tan, thank you for sharing about your son and hope he is doing well. As my son has gotten older, our concerns and advocacy have tended to be not so much focused in regard to finding out why Charlie is autistic, as to helping him live the best life that he can, now and in the future.
Vidya, I always appreciate your balanced commentary!
Kristina, I understand your position as Charlie is older. But I am thinking about the thousands of children around the world who wouldn’t have to have autism the sooner the causes (genetic or environmental) are identifed so people can take the right precautions. The answer could be as simple as insufficient breastfeeding:
http://www.autismweb.com/forum/viewtopic.php?t=8053
“prevention” and “eugenics” are pretty much the same thing.
It isn’t breastfeeding. I come from a family with 7 kids. I’m the only autistic. My insane mother tried breastfeeding with my brothers and I, my youngest sister was bottle & I don’t remember the spread between my older sisters. I just know I am the only autistic. So that’s not the whole answer, and I hope no one starts passing it out as such, lest mothers who couldn’t or didn’t desire to nurse blame themselves.
There are a whole lot of autistic adults, teens, kids who need research into how to integrate us into the community TODAY. We don’t need research to eliminate us. And as autism is likely a combination of genes, a) how many does one need to get the pressured abortion and b) how long will it be before someone sues their doc for not telling them that their child would be autistic, if they had the testing and came in just under the cutoff number?
Get autistics working, as appropriate. Communicating. HAPPY. Advocating for themselves. “Self determination” comes up when discussing just about any other condition/disability, so what did we do that’s so heinous we don’t deserve that and instead deserve to be eliminated?
After all, the money is going to one or the other, right? I’m not seeing a whole lot for adults ’round these parts, not without an MR dx.
Self-advocacy comes slowly to Charlie (as everything, indeed)—-we have to start now, as all too soon I will see a tall young man instead of my tall boy.
Tan, thank you for the link about breastfeeding—which, for the record, Charlie took well too as a baby.