As I read way too many blogs on the internet these days, I see a recurring phrase among autism moms. It goes something like this “I don’t care, what caused it. Now that he/she has autism, it’s my job to help any way I can.” I understand and respect that perspective, but there’s a part of me that feels a little defensive since I really do care about the causes of autism.
If Naomi had slow, steady progress with her therapies and biomed interventions, I would probably be among the ‘I don’t care’ ranks. After all, what does it matter if things are improving and you can’t go back in time? However, we haven’t seen slow, steady progress. Our path has been full of ups and downs. Progress – regress- progress- regress – progress -regress. (If I hear ‘it has to get worse before it gets better one more time, I’m going to punch someone!) I’ve frequently been told, when starting a new therapy or supplement. “Keep everything else the same so you know if it’s working.” This assumes, if we keep everything the same, Naomi’s behavior, awareness and sensory experience will stay the same. Well, it doesn’t. So often, Steven and I look at each other and said “Has anything changed in the past week? Are you giving her the same supplements, going the same places, doing the same activities?” The answer is usually “No. Nothing has really changed,” and “Yes, our routines have remained the same. ” Most of the changes we see don’t have an obvious cause. Of course, nothing is ever exactly the same. There are some things that are out of our control. We can’t keep the seasons, the weather, or several other extraneous factors the same. Nevertheless, there usually isn’t a change that we can point to. As far as we can tell, there’s nothing to point to.
So, if we knew the cause of her autism, maybe I’d have a better idea what causes this progress- regress pattern. We can’t possibly live in the modern world and avoid every last thing that may be unhealthy, but if I knew what triggered her, maybe I’d know how to prioritize and what to do to help her make progress. The ‘try and see’ approach takes an extraordinary amount of time, energy and money and it’s really not working for us. So maybe, just maybe, if we knew what the cause was, we’d our path forward would be clearer.
That’s why I care what caused it.