I’m not “devastated” about autism
April 10, 2006 by Kristina Chew, PhD
Filed under Fundraising, Science
Just received the annual fundraising appeal letter from NAAR, the National Association for Autism Research which is now in partnership with Autism Speaks. The research that NAAR funds is into the “causes, treatment and prevention of this devastating disorder.”
That quotation is from the first paragraph of the letter. As much as I–an autism parent–am in support of research efforts to find out more about autism, I–also as an autism parent–object to how autism is spoken about in the letter, written by NAAR Co-founders, Karen and Eric London.
I object and disagree to the reference to autism as a “devastating disorder,” the diagnosis of which in one’s child results in “potential lost and dreams shattered.” An autism diagnosis seems “devastating” because our society still thinks that any kind of “disability”–especially one that is neurological, cognitive, developmental, intellectual–is something bad. Does an autistic child have no “potential” and can she or he have no “dreams” at all?
Parents–I was one of them—have preconceptions, “dreams,” for their babies in the womb—“will he be a doctor? a lawyer? someday there’ll be grandchildren!”. But these are the dreams of a parent and not of the person, the autistic baby soon to be a child and then an adult someday. I don’t know what either Charlie’s potential or his dreams are, will, or can be.
As an autism parent, I welcome learning more about the “causes” and “treatment” of autism, as such research will help me to learn more about Charlie. But as for the “prevention” of autism……….if Charlie’s birth had been “prevented,” my life as it is today would be unthinkable.
Because life without Charlie–who went on a 1 hour 37 minute bike ride this morning with his dad and who is learning to read, to manage his self-injurious behavior, and to enjoy listening to John Coltrane–because life without autism is unthinkable for me.
Without Charlie and our life with him, I would be utterly devastated.
How’s that for a fundraising appeal?
Jeff Stimpson
Jill Cornfield
well said, Kristina.
My autistic son once said to me, “I wish I could have been the boy you never had.”
I am SO GLAD he is the boy I have.
Give him your son a hug from us!
A daycare teacher once called Charlie “a quiet leader” and the words really do ring true.
I agree with all that you said. That’s my stance on autism– learn and research as much as we can about it, how to cope with the detriments (self-injurious behavior, auditory processing deficits, anxiety, all of that) all the while APPRECIATING the individual gifts that autistic people, like ALL people, possess. Thank you.
Hi Kristina,
I totally agree. There is enough division within the community of those touched by autism without having to use pejorative language about autistics to add fuel to the fire. I wrote something similar here.
When I talk to parents whose children are newly diagnosed, I always tell them that I feel we get the gift of realizing that our dreams for our children are just that…OUR dreams. Every parent learns this sooner or later, but we get to let go of that and just enjoy our kids for who they really are.
Very good resource on attorneys. However, there is much more here http://www.beforeuhireattorneyorlawyer.com...
i agree all the way on this issue i am a mother of 5 autistic kids and i love them so much they are my life,my joy.Even if i could cure them i wouldnt because they are perfect the way they are.I am not at all stressed out over takeing care of 5 autistic kids well i actually have 7 kids only 5 are autistic.Autistic people are wonderful human beings and i would not change a thing about them.