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