Autism Genetic Study

[Mickey'sGirl]

Since Euan is now 4, our family has been invited to participate in a genetic study at the Hospital for Sick Children here in Toronto. They were looking for mulitple diagnoses in single families -- but the participants had to be between the ages of 4 and 18.

So, on Thursday, we will spend the day at Sick Kids, where the boys will undergo physical, academic and IQ testing, and then Brian and I will have some generalized testing as well. Afterwards, we will all have some bloodwork done....Even our parents and siblings will have the bloodwork done.

I am excited to be participating in such a long term study that is focussing on understanding the spectrum -- not curing it. (Anyone who knows me will realize this is a huge issue for me. I celebrate my children and am not looking to "cure" them.)

So we'll see what happens and let you know. All I know is that my hand has severly cramped from all of the forms and questionnaires I have completed in preparation!

[robyn221]

Many thanks to you and your family for being a part of this study (and for suffering through the writers' cramp). What you all are doing could really benefit so many families.

Robyn

[Von-Drake]

Our son participated in an autism related study earlier this year at the Medical University of South Carolina. He was fine except for when they had to draw blood. Let us know how yours turns out.

[HulaMinnie]

Wow, that's really interesting. Please keep us informed, if you will.

I think there is a family member on both my husband's side and mine who are somewhere mildly on the autism spectrum but it wasn't being diagnosed back when they were kids. I think the genetic factor is definitely there, but something environmental triggered it further in our son. Not necessarily saying vaccines, etc. - don't want to get into that discussion! - I don't know what, but something that took it beyond just being "extremely bright, but quirky" like these family members to actual autism in our son.

Anyway, I'm glad it's being studied and that you're able to participate!

[kakn7294]

Thanks to you and your family for participating in this study. I hope your participation provides some valuable research that can go a long way towards helping other families. You seem to have a different approach and attitude regarding autism. I'm betting you and your family benefit greatly from that.

[disneydeb]

I want to add my thanks to the list! You have a wonderful family and it was a pleasure meeting you all in October. Let us know how things go.

[KineGirl]

I am excited to be participating in such a long term study that is focussing on understanding the spectrum -- not curing it. (Anyone who knows me will realize this is a huge issue for me. I celebrate my children and am not looking to "cure" them.)

I think that the study sounds great! I have a nephew on the far far side of the spectrum and we all feel the same way. We just love the little guy (hes 7) and while we wish for his own self that things weren't so frustrating for him at times, we love him as he is. Hes taught us so much! <3 Im in my own genetic study that will probably not do much to help me with my own disorder (theres no "cure") but I wanted to do it to help others down the road understand the "hows" and "whys" and who knows... maybe even find a way to prevent the genetic trigger.

[MsMin]

Congrats and so glad you are helping out. Your comments remind me of a woman who had a PDD, a 15yr daughter and she asked, well she's 15 and it's developmental to that means she will be out growing it soon?? I wish more mom's were like you and the mom's on here, accepting and understanding

[ElenitaB]

Jenn, to you, Brian, the boys and your entire family for participating in this study.

My own family has participated in studies related to ovarian cancer and I find it very rewarding (and even empowering) to know that just by doing something as simple as giving blood, we can help the researchers come to understand more about our condition.

[BandMan]

We are also participating in a genetic study. As soon as DS #2 was diagnosed, we were approached by Children's Hospital in Minneapolis about participating. I think having two children on the spectrum is significant to the researchers.