I think most of us in “the same boat” can agree that, as a whole, we don’t know more than we do know about autism. We don’t know what causes it, we don’t know how to “cure” it, and we are still in the phase where we’re trying to figure out how best to treat it.
We’ve known that something was not quite right with the Monster since before his second birthday – as I’ve mentioned previously, that factored into our timing for child #2. One of the factors that went into that timing and decision was weighing the risk of having a second child with developmental delays… and the fact is, there’s not a lot of research into the probabilities of it happening twice.
The best research we could find at the time we started trying for child #2 indicated that we had roughly a 5% chance of having a second child on the spectrum… but that was also when statistics also said that there was roughly a 1 in 110 chance of having an autistic child. (I think the number was still quoted at 1 in 166 when the Monster was born.) And the fact is, “roughly” isn’t good enough for me. I was trained as a scientist, way back when, and I want real data to work on.
So. There isn’t a lot of data to work with. There’s only one solution for a scientist, and that’s to be proactive about changing that.
When we were closing in on child #2’s due date, the wife enrolled in a research study that’s looking for genetic markers. (This was also very helpful, as it helped nudge our doctors towards getting off the fence with the Monster’s diagnosis. It is so frustrating to hear, appointment after appointment, that they’re willing to put down that he has ‘significant developmental delay’ but hedge on whether it’s autism or not.) I had to give samples, she had to give samples, and we had to get a few samples from the Monster… and now we’re in the ‘getting samples from baby’ phase. I’ll save the humorous stories from this process for another post, though.
The flip side of the research study is having to fill out surveys now and again. The wife handles most of the ‘raw data’ surveys herself – questions on what the baby’s eating and the like – but I’m getting drawn in for the more qualitative questions, such as whether he’s squirming never/rarely/half-the-time/often/always when we change him, etc. (Well, I’m getting dragged in for pee-pad-placement and removal too, but that’s part of being a dad.) And this is the part that just gnaws at me. It’s not just the matter of trying to establish which of those boxes to check off for the baby, but also wondering which answers are the ‘right’ ones for typically developing kids, and how we could have missed that the Monster wasn’t hanging tight to that curve.
Given my gut feelings at the moment, at least as far as I can trust them, it feels like the baby’s doing ‘fine’. I can’t remember, though, if the Monster was doing the same things at his age, so it’s really hard to compare. All I can really do is continue to be honest with our answers to the surveys (they’ll continue until the baby’s turned three) and hope that maybe this time, we’ll have a better, earlier idea of whether intervention’s necessary.
There still is that unknown genetic angle. The study obviously doesn’t quite know what they’re looking for yet, or if they do, they’re not sharing. They also obviously aren’t going to tell us (if they identify something) that we do/don’t have it running in the family. I am hopeful that if they do identify something, it’ll eventually be useful for our kids. To put a different face on it – my wife and I are both Ashkenazic Jews. Before we got married, we were both tested for the most prevalent genetic disorders that run rampant in our population so we’d be forewarned before trying to have children. I can hope that, someday, they’ll do something similar for any genetic traits they find that are predisposing factors towards autism, just so parents have that warning as to what they might be dealing with.
All things considered, I think the study is a very good thing in the long run. In the short run, though, it does make me question how attentive a parent I’ve been…