The answer to this is: Yes, with stipulations. Brendon has been involved in two studies so far in his five years. I do say "so far" because in the future, as long as a study fits our guidelines and his abilities, I would probably put him in it. Some people will think this is horrible and that my child is being used as a guinea pig. Let me explain my point of view.
In the first place, a study must be harmless to him, not exacerbate any issues he already has, not irritate him emotionally or physically, and must not be a burden on our family. Second, it must have a potential to benefit other disabled people in the future.
The first study simply involved him wearing a small unobtrusive recording device so many hours a day to record the sounds he made. The one he's finishing up now is a behavioral study. I take him once a week to a one hour session. The idea is to see whether he will continue to use a method of communication he chooses longer than an alternative when all reinforcements are removed. I sit on the other side of a two way mirror and watch every second of every session. Let me tell you what it amounts to. In essence, Brendon plays with bubbles, play dough, or an IPad for an hour, but he has to request whichever item in some way to get it. Meanwhile, he is being videoed and three people with computers are taking notes on his every move. He has a lot of fun and hopefully this information can someday be used to tailor therapy for other disabled people.
What is our benefit? There is no monetary compensation, even for gas, but the doctor heading the study has been willing to give us ideas and input on some of Brendon's problem behaviors.
So do I allow my autistic son to be involved in research? For me, it's a YES!
I think that's great that you value research and allow Brendan to participate in studies. Without research, we wouldn't know which treatments were effective and which were worthless. Researchers take great pains to avoid any harmful effect from research procedures and have to have their projects reviewed by a human subjects committee before they are allowed to conduct any tests. Other families owe you a thanks!
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