Yesterday, I was searching for autism bblogs and stumbled across Pam Byrne’s blog. In one of her latest posts, she writes about her son’s increasing and then decreasing behavior problems. One of the things that stuck out to me was the tough choice Pam made to medicate Alex.
Back when I first learned aobut autism, it was through Autistics.org and other autistic advocacy sites. I was a firm opponent of medicating for behavioral control, believing that an autistic child or adult should be helped with proper supports, not dulling meds. Particularly neuroleptics (antipsychotics) can cause severe cognitive dulling and other side effects with autistics, so I reasoned one should stay away from those especially.
That was in like 2006 to early 2007. In July of 2007, however, I was about to move to a new city and into independent living. I was having terrible meltdowns related to this. My community psychiatric nurse suggested a psychiatrist’s consulttion, and I agreed. The psychiatirst listened to my story and thought for a bit. Then she started to describe what she thought medication should do for me, and I paged my inner pharma encyclopedia to find out what she might be thinking of prescribing. She suggested Risperdal, an antypical antipsychotic. I had little opportunity to change my situation in any other way – the move, that was one of the worst moves in my life, had already been scheduled for the next week -, so I felt I had no other choice but to consent to the medication.
This was a bad choice: I had quite serious side effects that weren’t being taken seriously, and the med was used to dull me into submission when in fact living on my own was not suitable for me. I tapered myself off the Risperdal two months into my new living situation. Three weeks later, I landed in a psychiatric crisis tht led to hospitalization.
The psychiatrist who admitted me into the hospital recognized the need for better supports rather than medication. I agreed and was med-free apart from a PRN tranqilizer now and then for over two years.
However, supports have their limits. Especially in a society that relies on massive budget cuts, it’s not like you can actually get perfect supports. I at least can’t. Also, I have always wondered whether medication could somehow help me reduce the overlaod that is actually quite inherent in my experience of autism. Medication should not be used to manage behavior in an unsuitable situation, but what if one’s support situation is as suitable as can be? Could meds actually calm the autistic mind when it is nonsituationally unquiet?
I asked to be put back on meds in early 2010. The medication suggested by my psychiatrist this time was Abilify, another atypical antipsychotic. And to be quite honest, I like it. I started at a very lwo dose, which had to be increased three times. Not always did I agree to this, in the sense that on occasion I’ve felt that supports could’ve been improved, but they won’t whether I’m on meds or not. I have minimal side effects even on a pretty high dose of Abilify, and I can tell, three weeks after my l ast increase, that I’m happier this way. So is Pam’s Alex. Of course, with a child or non-communicative or intellectualy disabled adult, it’s harder to tell whether the person is truly happier than with a person like myself, who can communicate reasonably well. This is why I still advocate taking proper care when thinking of putting a child or communicatively impaired or intellectually disabled adult on an antipsychotic. These meds do dull cognition, and it can’t be known in these cases whether the person is truly less irritable. I strongly oppose the idea that this is not important, except when a person is severely aggressive or self-destructive. In cases other than this, a person should only be put on meds if they’ll actually be feeling better. I do, and going on Abilify was therefore one of the better decisions I’ve made in my life.