Yesterday I received a phone call from a woman from ASD-CARC. She introduced herself and told me that I had signed with them in 2005. I vaguely remember something about that. They are a research facility and are funded by several agencies and are supported by Queens University among other community groups.
She asked if we would be willing to participate in a genetic study. It would be a DNA sample from Cuyler by way of a cheek swab/saliva sample. Their goal is to isolate different genes through the DNA profile of people on the autism spectrum.
It has been ruled out that there is no 1 autism gene, but they are now looking for patterns. They are hoping if they find anything that it may give parents an opportunity for earlier intervention.
I said that we would be happy to help and I asked a few other questions. Like if we would be privy to any results. She said generally no because it’s a group study and they aren’t looking at any one child in particular but we could check a box saying we’d “like to be informed of anything that may be of interest” to us.
I would have to send a copy of his formal diagnosis into them before the send us the kit – it’s all done through the mail.
After I got off the phone I didn’t feel quite as enthusiastic about the whole thing.
I don’t want to send his medical information to people I do not know through a fax machine.
I don’t want to send his DNA sample through Canada Post to people I don’t know.
Something just didn’t sit well with me. The whole mail-in part bugs me a bit.
And I don’t know why. If it could help other families – why wouldn’t I do it?
Am I being selfish if I don’t do it?
Maybe I’m bitter because I don’t feel like anything has helped us. I’m proud to say we’ve made enormous gains by ourselves. Our hard work, sweat and tears.
I see all this money being raised and millions being spent year after year on research and the best they can tell me is that ABA/IBI is the only proven effective remediation for kids like Cuyler therefore it is the only funded option.
Autism is a spectrum. No two kids are alike. So why would only one therapy work for all of them? One size fits all just can’t work here.
We tap every resource we have to pay for his therapies out of pocket.
Ya. I am bitter. But just a little.
I still haven’t decided whether or not I will have him participate in this. Something just makes me a little sad about having him be part of a research study. I don’t want my kid to be research.
Maybe I’m not bitter. Maybe I’m still in denial.