From Research Studies to Wanton Self-Reflection

by Tim on October 19, 2008

If your child is somewhere on the autism spectrum and you live reasonably near a university, it’s not unusual to get notices about research studies you can participate in. In our case, we live about 45 minutes away from UNC-Chapel Hill – home of TEACCH and all manner of ASD resources – so we receive notices a LOT. We get them about once every month or two as the toddler age range is, not surprisingly, an important thing to study in autism. All the notices we get sound quite interesting. We automatically rule out any that are in any way invasive or excessively stressful (e.g., medication-oriented ones or ones that required a significant disruption of his normal day), but so far I don’t think I’ve seen any of those.

The one we’re in now is largely done in J-Man’s pre-K classroom at the elementary school, and the whole classroom is participating in the study. They send evaluators in from time to time, do some skills assessments, take some video of the sessions, and collect their data in a way that quite seamlessly integrates with his normal routine there. The study’s official name is insanely long, but the short version is “Autism Spectrum Disorder Treatment Comparison Study” (see link for an overview – and check out their links page while you’re there).

As I understand it, the basic gist of the study is to compare preschool classrooms that use TEACCH (that’d be us) with classrooms that use LEAP with classrooms who are ‘controls’, though I’m a little fuzzy on what the controls are doing. As I understand the purpose of the study, they are looking at what ‘interventions’ produce the most improvement in preschool-aged autistic children in these comprehensive classroom environments. There are sites in various parts of the country. Apparently it will be at least 2011 before findings are published.

I’m a huge believer in participating in education-based research studies. Anything at all that we can do to further the knowledge of how best to help our – and all – autistic children grow into the best people they can be seems like a worthwhile effort.

That said, we have a boatload of self-evaluation forms to fill out tonight as they are coming to meet with us tomorrow for an interview, see whether we had questions about the forms, etc. Among these forms are two just for the parent (yes, singular). Why they are looking for just one of us to fill out the forms – rather than giving each of us our own set of the forms – isn’t clear. As the stay-at-home dad for the past three years (even though Mary works from home now), I’m usually the one who gets to fill those out since my answers are typically more what they’re looking for. Anyway, based on the questions, it looks like they are interested in how much stress and perceived demands being a parent of an autistic child puts on us.

I was surprised about how uncomfortable some of the questions were for me. What they’re asking for is not anything top secret or whatever, so it’s not uncomfortable like if they were asking about whether I secretly enjoyed watching Bambi’s mama die to the point where I’d rewind the DVD repeatedly or not or something (I don’t, by the way). They’re more questions like, rate from strongly disagree to strongly agree, “Being a parent is harder than I thought it would be.” or “I find that I don’t have many friends anymore.” or “I’ve had to give up more of my personal aspirations than I thought I would.” or “My child does things that really frustrate me.” I guess these and others turned out to be questions I’d rather not be thinking about.

That last one especially got me. If I feel frustrated, I try really hard to remember that when I feel frustration, that’s about me. That’s my stuff; those are my emotions; I need to take ownership of them and not put those on him. But, I’m human, and so are you. We still yell things like, “Can’t you just for once do something I ask?” and then hate ourselves for it later.

So I found the forms depressing. Being a seasonally-affected person, the last two cloudy days didn’t help. Still, I know this whole journey has been harder than I imagined it would be, and that I really don’t have a social life or circle, and that I have radically changed my career aspirations, and I do feel frustrated. But at least by knowing all this, I can take some ownership of it.

As I circled each response, it was like claiming some little part of these wildly varying emotions. And the more I claim them, the less likely I am to take them out on J-Man or Mary. After all, those emotions are mine and they are about me.

The moral of the story perhaps is, the more you can circle and claim these feelings as yours, the less likely you are to blame other people for what is really your own stuff.

I actually had a whole next section to this post to continue the hardcore self-reflection, but maybe that’ll be for another time.

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{ 2 comments… read them below or add one }

Michelle October 21, 2008 at 10:48 am

You’re doing a great job, Tim. And believe me, you aren’t the first parent in the world to have those feelings. I never imagined my family would be on the roller coaster ride we are on either. I have to remind myself every day that being a stay home mom really is an investment. And when they are grown and out of the house, I can have the bathroom to myself!

Tim October 30, 2008 at 10:38 pm

Hey, Michelle! Thanks for cheering me on. Over the last few days I’ve been surprised about how much those research questions have lingered with me and how much I’d rather not think about them. I think answering all that stuff depressed both of us. It was one of those reality-check exercises where you realize you’re living on a whole other plane of existence from most of the rest of the world. But given everything y’all have been through, I’m not telling you anything you don’t already know.

One of the universal issues among parents whose one and only kid is autistic is that they lose all frame of reference about what ‘typically developing’ is supposed to be. On the occasions when we do intersect with the typically developing world, it can feel like being hit with a wave of sobering reality. You can see not only how far you’ve come but also how far there is yet to go.

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