Q My granddaughter was diagnosed with autism and mental retardation. She does not speak and is extremely hyperactive. Her sleeping pattern is irregular. Her medication is constantly being changed. She is currently taking Geodon and clonidine. She rarely has a full restful night. Would she benefit more from being evaluated by a psychopharmacologist? We are open to taking some new direction since all medications have really failed.
Before we get to the question of a new evaluation, I’d like to discuss the symptoms and behaviors that you are concerned about. Sleep is difficult for many kids with autism. Researchers have been trying for years to find medications that not only induce but also regulate sleep to address this concern, but they have not been successful. While not originally developed for this purpose, Clonidine is sometimes helpful in inducing sleep but not maintaining it. (Clonidine is also often used in the treatment of ADHD, which your granddaughter appears to have at least some symptoms of.)
But the bigger issue—and this is of course difficult to ascertain because of her communication deficits—is whether your granddaughter wants or needs the sleep we tend to believe she requires. In my experience, many people with autism have fundamentally different sleep patterns than those who are not on the spectrum, leading me to believe that there may be a physiological basis for these patterns. Autistic brains are profoundly different than ours, and I think that many people with autism just don’t do, or possibly need, 8 hours. If this is the case, then this is a difficult proposition for caregivers, but I think it is one that needs to be considered.
As for the prescription for Geodon, which is classified as a “second generation” or “atypical antipsychotic,” it can function essentially to help reduce impulsive or aggressive behavior. This would lead me to believe that along with your granddaughter’s hyperactivity there may be some impulsivity and even aggression, either towards herself or others.
Now, there is nothing odd to me about this combination of medications in a child with impulse control and sleep problems. But it does make me wonder who is prescribing and monitoring it. In my experience, a pediatrician, pediatric neurologist, or developmental pediatrician, who would likely make an autism diagnosis and manage a child’s care, would not always be comfortable prescribing this combination of medications without the consultation of a psychiatrist. In any case, any regimen of psychotropic medications should be monitored by a professional who is comfortable and experienced with the prescriptions, so I do believe that an evaluation of the treatment plan by a child and adolescent psychiatrist skilled in psychopharmacology is warranted if you do not already have one.
But the much larger point I must make is that all of the other interventions we have learned to provide for young people with autism are much more important than psychopharmacology. Whenever I have been involved in the treatment of a child with autism, it has always been as a consultant—a spoke on a wheel whose center is a comprehensive intervention team that is skilled in a number of interventions that can include behavioral interventions, speech and language interventions, social skills training, occupational therapy, and physical therapy. Medications alone are never enough and cannot treat the core symptoms of autism, for one, and secondly it “takes a village” to help kids with this disorder to learn language and the basics of social interaction and to live up to their potential. I truly hope that you have a support network like this for your granddaughter, and if not I would make it my first priority to build one.
In closing, it is a fact that medications do not always alleviate what we see as distressing symptoms of autism and when they do work the impact is usually modest. However, the addition of behavioral (like applied behavioral analysis, or ABA), speech and language, and social skills interventions can succeed in giving people with autism helpful skills to navigate the world that they might not have otherwise had.