As a result of this and other studies, families are traveling outside the US to have potentially dangerous procedures, such as one similar to bone marrow transplants, done on their children with autism. Quoted in the news story, Judy Van de Water, an autism researcher at UC-Davis, expressed concerns about families seeking out such a procedure, which is “incredibly expensive with very little foundation in science to back it up.”
Reading this quote, I was reminded of phone calls my advisor got after his paper on propranolol and verbal fluency in autism was published. Even though this drug study was small (with 14 participants) and not yet replicated in an extensive clinical trial, parents were asking about prescriptions for propranolol for their children.
I understand the rush. Dealing with a tantrum-throwing, even self-injuring, child with autism is enough to drive any parent to seek out any form of treatment. But this rush is all too dangerous. Adopted without adequately supportive research, investigational treatments can be disappointingly ineffective, or, worse, harmful. Perhaps the best thing a desperate parent can do is wait; wait and listen for answers. It’s these answers, not the temporary fixes or the illusory “cures,” for which we are carefully searching.
[This post was originally published at my previous blog, Neurolore.]