Not so new news about Risperdal
November 7, 2006 by Kristina Chew, PhD
Filed under Health
The anti-psychotic drug Risperdal was approved in October by the FDA to treat irritability and “behavior-related problems associated with autism in children” (see this UPI article). We have known about Risperdal being used to “manage” aggressions and self-injurious behavior in autistic children for more than a few years; we have also long known about its side-effects (including weight gain). Charlie has been taking Risperdal since March of 2004.
It is therefore somewhat misleading for an article in today’s NewsDay.com to headline an article about Risperdal and autism as A new drug for autism, and a new debate. Rita Schreffler, executive director of the National Autism Association, an “advocacy group for families of autistic children,” is quoted as saying:
“The choices parents of autistic children have to make regarding medications are very difficult and very important. We don’t fault any parents for doing what they need to do for their kids. But this particular drug appears to have some very serious side effects. It’s a nightmare.”
A doctor, Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Schneider Children’s Hospital in New Hyde Park, NY, is referred to as calling for a “‘balanced approach,’” in which medication may be an option if a child is (for instance) head-banging or biting himself and other treatments have not been successful.
I concur with both Schreffler’s and Dr. Adesman’s positions. Schreffler’s choice of the word “nightmare” to characterize the side effects of Risperdal needs, though, to be weighed against what a parent and what an autistic child faces if that child engages frequently in self-injurious behavior. Knowing that your child might detach his retinas by head-banging—and taking him to the optometrist regularly for the purpose of checking his eyes regularly—is something of a nightmare—-has nightmarish aspects—in and of itself.
I’d rather have detached retinas and brain damage from head-banging than be on Risperdal. Nightmarish is certainly how a large number of autistic people I know describe Risperdal. You can talk all you want about how horrible it is as a parent to have a kid doing these things, but maybe you should put yourself on Risperdal for awhile.
Tardive dyskinesia was a nightmare. Lactating was a nightmare. The drug they put me on with Risperdal to prevent said lactation was REALLY a nightmare.
But the few good months I got of no meltdowns where I totally forgot what I did (and destroyed…) and where I could SLEEP were nice, given that I was living at a YWCA. It was the right drug at the right time.
AND it was a baby dose (0.25mg for a full grown, if small, adult), with FREQUENT monitoring and a doc who listened to me & made changes the second I had problems. I had ways of making it known that there were problems-though “twitching…bromocriptine…cyclemoodthing…seizuresmaybedunno…ummmTDandthisisALLDONE!” probably only made sense because the nurse, doctor, AND therapist at the clinic I went to at the time were skilled at translating Kassianese at this time, and the nurse had known at least 20 OTHER autistic adults.
Most people being put on Risperdal “for autism” aren’t in this situation. And I still think approving it for irritability was CRAP.
I’m not brave enough to have taken that step yet, but I’m sure that parents have carefully researched their options.
Approving it for “irritability” still strikes me as a strange turn of phrase—thank you, Ballastexistenz, for the suggestion (again). Charlie-ese is a second and foreign language to me but a parent can only stumble her way through a translation—-after research, and worry, and in full knowledge of making a mistake.