There has been a recent flurry of new discoveries about the nature and cause of autism (revised estimates about the role of the environment vs. genetics, new data about the likelihood of a younger sibling having autism it the older one has it, research advancing the idea of different biological types of autism). But as important as this research may be, it doesn’t change the day-to-day reality for parents currently raising children with autism.
A column posted today by Lisa Jo Rudy, who writes about autism for About.com, offers a useful reminder about the challenges these parents face: They must sort through a wide array of time-consuming and costly therapies for these kids who have very different needs from each other despite all being on the autism spectrum. While there may be some experts who can offer guidance, they are few and far between and often have long waiting lists. What that means is that parents often shoulder the burden for how to proceed. In writing about her own experience raising a son with autism, Rudy notes, “I was constantly rocked by waves of guilt over whether I was doing ENOUGH, TOO MUCH, or the WRONG THING to help him.”
She also discusses various approaches that are widely accepted and observes:
Over the years, I dipped (with Tom [her son]) into auditory processing therapy, vision therapy, dietary therapies, dance therapy, RDI, Floortime, music therapy, social skills therapy... But being a bit of a skeptic, it occurred to me early on that there was NO WAY to know which of these would help the most, or even to be sure which were making a difference when his skills improved. After all, he wasn't going to quit OT, PT, speech or school in order to try out vision therapy exclusively!
What was worse, since all these therapies are essentially "alternative" in the sense that a typical pediatrician knows little about them, there's no one to help guide a parent through the maze. Yes, there are coaches out there, but none know more than the well-versed autism parent about whether X Y or Z therapy is going to be the best option for their individual child with autism.
The column does not offer a neat solution. But it offers useful advice on how to evaluate and make choices. And it does explain why parents of children with autism can become so frustrated. For many seeking help, they have no one to turn to but themselves.
Previously: What’s a parent to do: Risk of autism appears to run higher in siblings and Surprise: Environment’s big role in autism risk