Enough and Not Enough: Autism Research
Studying Autism Isn’t Enough proclaims an article by autism parents Cathryn Garland and Michael O’Hanlon in today’s New York Times. While applauding the Senate’s recently passing of the Combating Autism Act and hoping for its approval by the House, Garland and O’Hanlon note that our nation needs to “focus seriously on treating those children who are already afflicted” and call for equal attention, and funding to be devoted to “treating” autistic children. Garland and O’Hanlon, who have a four-year-old autistic daughter, describe ABA, Floortime, and RDI as three methods that have helped her.
Like Garland and O’Hanlon, I very much believe that more resources need to be devoted to helping autistic children and persons. Unlike Garland and O’Hanlon, I do not see autism as something that my son Charlie is “afflicted” with, nor do I think that “it is time to rescue the children who already are afflicted.” Charlie is autistic now, he was born with autism, he does not need to be “rescued” from autism. He does need to be taught using the methods that are best suited to his particular cognitive needs (in Charlie’s case, this is ABA, and we have tried more than a few approaches). While as Garland and O’Hanlon write, “early and intensive intervention is critical,” “intervention” or rather educating an autistic child does not, and ought not, to end when a child reaches a certain age (say 5, the age after which most children no longer attend preschool).
I prefer, too, to speak not of treating Charlie’s autism, but of teaching Charlie, my autistic son. Garland and O’Hanlon suggest that the passing of the Combating Autism act will “hold out hope for the next generation”—-by finding, it is suggested, “the causes and characteristics of autism”—-but I look to no legislation to find hope for the future. Legislation is a necessary part in the process of helping our children, but I think that it is our children themselves—in autistic persons themselves—that the most hope is held out. I need look only at Charlie, need only see him stealing a glance at his dad as they race off on their bikes down the street or note his serious face in the rear view mirror as he looks out the window to make sure I am driving in the right direction to the store, to find evidence for why autism is much more than “a terribly devastating set of conditions,” and why there is always so much hope.
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POSTED IN: Diagnosis, Education, Family, Legislation, Money, Parenting, Politics, Psychology, Science, Treatment, Vaccines
5 opinions for Enough and Not Enough: Autism Research
Ashley Morgan
Nov 21, 2006 at 7:23 pm
Excellent post Kristina. The word “afflicted” isn’t a word to use associated with Autism. It’s not only horrible, but inaccurate. When an article like this comes out, it’s always a reminder about how uneducated the world is about ASD.
Leila
Nov 21, 2006 at 7:46 pm
But Kristina, I do hope for legislation that will guarantee an opportunity for ALL autistic kids to get the education they deserve. I’m lucky to live in a state and school district that offered everything my son needed on his IEP. But that is not happening for the autistic citizens of Maryland (2 hours a week, what a joke!) and other states.
So even though I also disagree with terms like “treatment” and “afflicted”, I was happy to see that article in the New York Times, because it may help push legislation to fund one-on-one teaching to autistic kids that are not receiving appropriate education right now.
Ashley Morgan
Nov 21, 2006 at 8:27 pm
I like what you said Leila. The majority of children are not getting the support they deserve. Because of this article, I believe many parents will feel enlightened and more confident when advocating on behalf of their children.
I also think “typical” households will be more enlightened to what’s happening as well, and how it makes economic and human sense to fund the education of our ASD children.
I have some of those comparisons too - just 5 minutes from my house there are no formal services for ASD children, while in our district we now have excellent service providers. The wealthier families indeed get the better services it seems.
Kristina Chew, PhD
Nov 21, 2006 at 9:15 pm
Leila, Yes, definitely am with Garland and O’Hanlon calling for education for all ASD kids; I understand the call for early intervention but want to ensure that any legislation also considers children who are past the age of early intervention. We’ve lived in the Midwest and in various towns in New Jersey and services (amount, quality) have differed from place to place, as Ashley notes. And two hours of EI is too little, for sure.
Autism Vox » A reason to be joyful
Dec 24, 2006 at 6:49 am
[…] Two autism fathers mix praise for the passing of the Combating Autism Act (CAA) with a call that greater resources be devoted to autistic children and autistic adults now in an op-ed in the December 24th Washington Post entitled A key achievement of 109th Congress. Michael O’Hanlon is a senior fellow at the Brookings Institution and father of an autistic daughter; he and his wife, Cathryn Garland, wrote an editorial in the November 21st New York Times on the CAA and calling for more attention to treating autistic children. Stuart Spielman, father of a 12-year-old autistic son and autism advocate, contributed to the drafting of the CAA and also to Maryland’s Medicaid autism waiver. As we work to fund what is authorized by the Combating Autism Act, we also need to turn our attention to the often neglected public policy question of how to help those already affected. This agenda includes everything from improving the quality of adult care for those needing intensive help throughout their lives, to helping autistic individuals find and keep work for which they are best suited, to making therapies more available to young toddlers in the crucial preschool years when the most can be done to help them. […]
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