I am completely exhausted. All in the name of science.
About three weeks ago, I received a letter in the mail from the Interactive Autism Network, asking if we’d participate in a research project through Children’s Hospital. The study, sponsored by the Simons Foundation, is looking at families with just one child on the autism spectrum in attempt to understand if there’s a genetic or environmental link to autism. All participants receive an autism evaluation for their child for free. My family fit the research criteria perfectly : only one child with an ASD diagnosis aged 4-17, one or more typically developing sibling older than 4, two biological parents willing to participate, and no other cases of ASD in the immediate or extended family (that we know of).
At first, I put the letter into the recycling bin. I wasn’t all that interested in putting my family through some research project, and I was somewhat skeptical of the study as a whole. But something kept bringing me back. We fit the criteria perfectly. What if by gathering data on our family, we were able to help scientists find a cause for autism? What if we were able to help identify ways for earlier detection, and thereby earlier intervention? I did a little research into the Simons Foundation and the project in general, talked to Tim about it, and decided to give them a call.
I asked all the appropriate questions, and got all the acceptable answers. Yes, it was all anonymous. The blood samples and questionnaires were all assigned an ID number so we could not be identified. The information from the assessment would be ours alone and we could choose to share it with school and/or our doctor if we wanted to. The blood draw would be handled by Children’s Hospital by a team comfortable working with kids on the spectrum (and 8 year olds who are terrified of needles). They would even send us a practice kit and a social story for the blood draw. The kids would be compensated for their participation, and the researchers would come out to the house for the interview portion of the study. After getting the ok from Gerry about the blood work (five minutes of torture equaled a new Star Wars Lego set in his mind), we set up the appointment.
(speaking of Gerry, we included him fully in the discussion of whether or not to do the study. His participation was important and we thought he was old enough to understand the purpose of the research and how he could be helping scientists discover the cause of autism. He thought about it for a long time, as he is apt to do. He came down on the side of helping kids like his brother. Couldn’t have been more proud of his thought process. The only exception is when I told him that the criteria involved having one kid who is on the spectrum and his other sibling not on the spectrum. His response to me: “well, I know I’m not. But we don’t know about Lewis yet.” Ugh. That was the kick in the gut that I didn’t need).
So today two researchers came out to the house and spent four hours with me and Howie. One researcher administered the ADOS (Autism Diagnostic Observation Schedule) to Howie, and the other one went over the ADI (Autism Diagnostic Interview) with me. Howie did great – he spent almost the whole four hours at the table with the woman with just a few short breaks. On the other hand, I was a wreck. The questions were incredibly comprehensive and detailed, asking me to recall a million small details of the last four years of our lives. She asked about his speech, social interactions, and what developmental milestones were met or not met. She asked for specific examples of speech patterns and moments of aggression. She asked when we first noticed problems. She asked four straight hours worth of questions.
I tried really hard to focus. In so many ways, it was as if I was reliving those years all over again. I could feel myself starting to fidget, and my body language was clearly showing my discomfort. I know this because the whole interview was videotaped, and the little screen was turned around facing us at the table so my crossed legs and arms were staring right back at me. It didn’t help that every question that I answered out loud for Howie I was answering in my head about Lewis. A little bit of knowledge is a dangerous thing, and I was diagnosing Lewis along the way.
After finishing the ADI, we went through two more questionnaires – one about Howie and one about Gerry. She gave me a few others to complete before our blood draw day at the hospital, including one social behavior questionnaire that I answer about me and one that I answer for Tim (and vice versa – that should be interesting). They closed up their video cameras and went on their way around 2pm. Thirty minutes later, Howie was out for a nap. He was done. And so was I.
I’m still having some mixed feelings about the whole thing, even after today. We’ll finish up the study at the hospital in a few weeks and get the complete report from the assessments in about 6-8 weeks. I’m not really sure what we’ll do with the information we get. The scientist in me says that I should just file it away, that the point of participating is to help gather data with the hope of discovering a cause of autism spectrum disorder. That’s pure science.
Then I remember there is no scientist in me. Just a parent looking for some answers and some hope for the future for myself and my family. Just like so many other families.
“She blinded me with science!”
And hit me with technology” – She Blinded Me With Science by Thomas Dolby
August 20, 2010 at 9:00 pm
I know exactly what you mean. We have Cubby in a sibling study, and every few months we go through a tortuous 7 hours. I have to just focus on the end result, and the benefits that the research will bring. Still, ick, don’t our kids go through enough?
August 20, 2010 at 9:44 pm
wow – I’m impressed that you do that. You’re right – the end result is the most important part. but yes, our kids go through a lot. All of them.
August 20, 2010 at 9:00 pm
Wow, those four hours of questions sound absolutely exhausting. Hugs to you for getting through it! I’ll be interested to read about the feedback.
August 20, 2010 at 9:45 pm
thank you 🙂 I’m actually interested to read the feedback too. I was so focused on trying to stay focused on my part that I couldn’t even eavesdrop on how things were going in the other room. I am curious to see what they say.
August 20, 2010 at 9:49 pm
I’d be REALLY interested to find out the results of this!
I’ve often wondered why all 3 of my kids ended up on the spectrum and why I didn’t get at least ONE NT child.
(My daughter is officially undiagnosed but many specialists have told me that she fits so much of the criteria that she would easily receive an aspergers dx)
I’m so proud of your little man for going through with this! How incredibly noble and brave of him!
PS, I also think it’s normal for you to have questions regarding Lewis, I mean, the “wondering” part is natural. It doesn’t mean that anything will come of it though 🙂
August 20, 2010 at 11:57 pm
It is an interesting study premise, and they’ve been doing in different sites all over the country for 5 years or so. I hope they figure something out.
Thank you for the support as always. 🙂
August 20, 2010 at 10:22 pm
Just want to thank you from the community-at-large. You gave up precious time so that many could benefit.
August 20, 2010 at 11:57 pm
wow! thank you! I guess I never thought of it that way…I hope they find something out one way or another.
August 21, 2010 at 1:20 am
I have also done studies about my son– 🙂 the ones I did pay us for our time!
But… I really know how you feel about all the questions I thought I knew my child untill they started asking all the questions.
Our study calls every so often and gets an update– it is SO great to answer, that “behavior” is no longer an issue!
August 21, 2010 at 3:32 pm
Wow, I am so impressed at your sacrifice. And amazed that Howie handled it that well, and you, for that matter. That kind of interview might have done me in. Way too hard to remember all that and to concentrate for that long. Still, I appreciate what you are doing for autism research. Let’s hope they find some answers.
August 21, 2010 at 3:47 pm
It’s funny that you say it that way, since I didn’t really see it as a sacrifice, but more self-serving (as in I know I’ll get a report back with some info). The interview did do me in, that is true. I fell asleep at the table while everyone was eating (just for a brief second 🙂 ) and had ice cream for dinner. My coping strategy 🙂
August 22, 2010 at 3:12 pm
Hi! I’m following from Bloggy Moms. I hope this research helps a little with at least providing more information or ways to help your child.
August 22, 2010 at 10:06 pm
Thank you, and thanks for coming over from Bloggy Moms!
August 24, 2010 at 12:51 am
We also applied for the Simons Simplex study, but were rejected during the initial screening process because Evan was premature. Evan has an educational classification of Asperger’s, but is probably PDD-NOS-ish. Gotta love a spectrum!
One thing you didn’t seem to think of…they kept you busy so you COULDN’T evesdrop on Howie. They’ve met moms like us before. 😀
August 31, 2010 at 11:33 am
[…] me for hugs for hours straight. I know others see it and think it’s cute. When we had the Children’s Hospital researchers here a few weeks ago, Howie was clearly uneasy about them being in our house. He asked […]
September 13, 2010 at 3:14 pm
I think it’s great you participated and am really impressed at how beautifully your kids handled it. I looked into whether or not we could do an SPD study (I have a science background and can’t help wanting to contribute). But we don’t live close enough to any of the centers.