Expert: Ettina - 1/20/2010

Question
My 14yr old daughter is autistic, diagnosed 11 years ago. She has very limited speech, but fair understanding of commonly spoken words. She was diagnosed with epilepsy 5 months ago and is now taking Epilim, thankfully with no further seizures. She has had some side-effects, mainly relating to increased appetite and hair loss. Recently she has developed very strongly obsessive behaviours relating to emptying things and throwing them away. Particular favourites are food packets which she has to eat to finish, despite having eaten plenty already, and anything that goes in a bath, such as bubble bath, shampoo, soap etc. We are finding it increasingly hard to manage these behaviours. It is impossible to reason with her to try and stop the behaviour. If we physically try and stop her, she gets desperately upset, charging around the house, slamming into walls/doors, screaming incessantly. At 55kg, we worry that she will harm herself. She is utterly focussed on the behaviour and cannot be distracted. Eventually we give in or she sneaks behind our backs to complete the process. Some of this behaviour was present before the epilepsy medication started, but it does seem to have got worse, though whether there is a direct link we're not sure. We are barely able to ever sit down and relax, which is taking it's toll on us and her two siblings. Does anyone have any suggestions regarding strategies to deal with this?

Answer
There are two basic types of compulsions in autism: happy compulsions (things they do because they're fun, relaxing, or otherwise enjoyable) and anxious compulsions (things they do to avoid feeling unpleasant emotions, such as anxiety).
Unless your daughter has been allowed to get away with quite a lot, her compulsions are pretty clearly anxious ones. This is basically the exact same thing as obsessive-compulsive disorder, and the medications used for that condition might help. Apart from that, letting her do it when possible rather than interfering is a good option.
Since it got worse after she was put on her current medication, it could be a side effect. You might want to talk to a psychologist about adjusting her dosage of Epilim, in the hope that you can find a dosage that controls her seizures without too many side effects. If this is a side effect of Epilim, you'll have to carefully weigh the problems her seizures can cause with the problems her compulsive behavior causes.