On autism research

Since the Batsman’s diagnosis in 2010, we have received multiple requests to participate in autism research projects. Some invitations have come via our ABA therapy service provider, others through various online forums and university noticeboards and others by word of mouth.

We have participated in quite a few. Some of these have meant testing and research assessments of the Batsman and his skills, others have involved me completing interviews and questionnaires and even the Batsman’s neurotypical little brother, the Bowler, has got in on the act participating in research projects based around siblings of kids with ASD diagnoses.

Research is such an important quest and it is this that has driven my decisions about doing it. I have viewed our participation in various research as one way that we can leave a legacy for those who tread the autism road behind us. But of course, it is always a tricky balance to ensure that being a part of these projects does not add unnecessary stress and angst to our little family, particularly to the boys.

This week I said no to a research request. No matter which way I looked at it, I couldn’t justify a 5 hour research and travel time combination for the Bowler to be part of a study in the week before the Batsman begins primary school for the very first time.

And even though I am ok with having said no, it’s still nagging at me. Just a little.

So I am curious, have you participated in autism research? What are your thoughts on it?
I’d love to know.