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.
I understand your feelings completely. My son has a brain tumour and I was recently asked to have him take part in a study that assessed if kids with his type of tumour have learning difficulties, and what kind. I felt like saying,”I already know they do, so why should I put him through more hospital appointments just so you guys can confirm that this is true? Why can’t you use your time and money to develop something that will actually help him?” By the way I don’t think you are bitter OR in denial. And I hate that poem about Holland (okay maybe I am a little bitter…)
What a great, thought provoking post Christine. I totally and completely understand where you’re coming from and then read Jen’s comment and thought ‘how well put’ – and I agree.
Before I had Will, my sister came with me for my ‘genetic testing’. When the doctor found out that my nephew had autism, he asked if he could do some genetic tests on my sister and I to see if we shared any genetic anomolies etc. I think all doctors in the field are so frustrated by this disorder that anything that they can think of, they’re trying.
I totally get your frustration with the system and its faults. You need to do what feels right for you and for Cuy!
I can not relate exactly, Christine, but I can relate to your feelings of resentment. When my mom was diagnosed with terminal melanoma she decided to participate in some clinical trials. I sort of knew at the time that these trials were very unlikely to help her but would help to advance research. But I still hung onto the hope that this would be a magical cure for her. I think she knew better than any of us that her act was a selfless one and that her best hope was that her involvement would some day help someone else.
We had no idea during this time whether she was getting the “drug” or the placebo. We didn’t know what they were measuring or how she was responding, if at all. We never communicated directly with anyone involved in the study, only with the staff administering it who were as in the dark as we were. I resented this. I hated the fact that they identified her by a number. She was MY MOTHER. I was desperate and definitely in denial.
However, looking back I realize what a gift she gave. Yes, even she likely had some small hope that this would extend her healthy time with us but, as a life long nurse, she would have known that her final act was a selfless gift to the future. She was well aware that, although she was one of the most important people in our lives, she was just one of millions suffering and dying from cancer.
As hard as it is, Cuyler is one of millions and he has an opportunity here to possibly help others and maybe even to help himself. Those research dollars you were referring to? Here they are in action. I know how hard it is to look at someone you love and want to shake everyone and make them realize your desperation. I can not even imagine how all encompassing this would be with a child. But with this his legacy could be greater than just the impact he has on those in his every day. Maybe then it is worth it?