Update Feb. 2, 2013: I’ve had three emails this week about medication and autism. I’d work on a better, more concise post about meds, but my DVR is running out of space and that situation needs to be handled immediately. So here’s my post on the subject from last year. If you have any resources you’d like to share, or blog posts of your own (Pro-medications or not, I’m open to all experiences) I would greatly appreciate it and will incorporate it all into a future post.
Casey used to rage. He still does, but nothing like it was. When he was four, things were getting unmanageable. He’d rage for hours. He’d scream, he’d kick, bite, slap, punch and throw things at anyone who came within his reach. We tried everything. Every behavior modification technique I had learned in my psychology courses. I read. And read. And read. But every technique we tried only seemed to infuriate him more. Finally, our only resort was to clean out his room except for his bed. But even that, in one particularly bad rage, didn’t work. He ripped off the metal scrolls off of his bed.You can see it in the picture. We should have also gotten rid of those curtains before he did.
For years the teachers and paras at Casey’s preschool told me that we should put him on ADHD medicine. I refused. I wasn’t going to drug my kid just to make their lives easier. I thought then that ADHD was entirely over-diagnosed. He was just busy. And he was autistic. His older brother, Carter, is incredibly “busy”. Always has been. We would use behavioral techniques because psychology combined with prayer can do anything, right?
Nope. It became clearer to me as time went on that Casey just. could. not. stay. still. Not ever. There were too many things going on. Even when he slept his body couldn’t quit moving. And sleep was RARE. So I gave in and had him tested. His teachers, his speech therapist and his dad and I filled out questionnaires. He had ADHD, and not just a little bit. It’s hard to see where the line between autism and ADHD is…if there even is one. For Casey, the ADHD was something we could treat.
We tried out several medicines, monkeyed with the dosing until we got to the one we’re on now- vyvanse. Each kid is different. It sucks that you have to experiment on them, but it’s the only way to get to a good, even dose (update 2/13: there’s new genetic testing that can help determine which kind of ADHD medicine will help your child the most. It’s new, but most insurances cover it…post forthcoming). At the same time, we put him on a sleep aid. We had tried melatonin in all it’s variety for months before. It helped for the first few hours, but didn’t last. He was usually up for the day between 3:30 and 4, after getting up during the night a half a dozen times. We put him on Trazadone. Trazadone doesn’t help him fall asleep so much as it helps him STAY asleep.
The difference was night and day. He could sit! He never could just SIT. We had never been able to sit through even the first fifteen minutes of church before I had to take Casey to the hall. I thought it was all the autism’s fault. It wasn’t. From that point, he really blossomed academically. He started to read! The sleep was helping a bunch, too. He wasn’t so irritable. It was a Godsend.
But the aggressive behavior continued. It wasn’t horrible all of the time. Casey cycles. He would have a couple of bad weeks, then a couple of really good weeks. But by six, one of his cycles stopped seeming like a cycle and started seeming like a new normal. Something in him had changed. He was throwing desks at the other students. He punched his teacher in the face. And his aid. And the recess lady. I was going to his school every single day, usually to bring him home because there was nothing more they could do. He was a danger to himself and to others and they did not have the manpower to care for him.
Neither did I. Abby wasn’t yet six months old. She had her own serious health issues. I worried for her and the other boys’ safety. I worried about Casey. I knew he didn’t want to act like that. He’s a good, sweet hearted love of a boy. I knew he wasn’t happy. He just couldn’t control it. I ached for him. For the pain and turmoil he was feeling. I didn’t want him to feel like that anymore.
We took him to the Seattle Childrens Hospital Autism Center. They tried Guanfacine first. Guafacine is a blood pressure medicine. It’s off-label use is for children with issues such as Casey’s. It started to help a little, but as we had to increase the dose, he started getting headaches. We came to find his blood pressure was dropping too low. They suggested respiradone.
This to me was the mother of all scary drugs that I did NOT want to give my child. I thoroughly researched it. Years before I went to an autism convention and heard a lecture by one a neuropsychologist who was doing research into the drug. This was when Casey was four and was so aggressive. I spoke with him at length after about Casey. He said that Casey’s form of autism responds very well to the drug and we should really consider it. I kept going back to that conversation. The doctor had given me his email and we had written back and forth over the years. He sent me literature that showed how much it had helped.
And I believed him. I didn’t doubt that there was a chance it could really help. It was the side effects that I was afraid of. I watched the PBS Frontline program called “The Medicated Child” and it scared me even worse. I knew very well that Casey’s brain was not completely formed and I was scared of what powerful drugs would do to it.
Respiradone is an anti-psychotic. It was first used to treat schizophrenia. Studies were done that found that it was hugely successful in treating aggression in children with autism. We felt like there was no other choice. After a lot of prayer and a LOT of tears, I gave in.
Casey is mainstreamed this year with the help of his fantastic teachers. He could have never been in a regular class without these medications. He still has his rages, but they are rarely violent. He’s able to control himself, mostly. It also has the side affect that it makes him hungry- which is good because the AD/HD medicine makes him not. He’s been able to maintain his weight. He still looks like a “stick figure” (in his own words), but we’re not worried about weight loss any longer.
I’m not sure what the future holds medicinally for Casey. We tried to take him off the Repiradone this summer (sort of because we didn’t have a prescription as we were traveling across the country…). It did not go well. I think I sort of hoped that his aggressive behavior was just a stage and that we were through it. But I think more now it’s a symptom of his autism. I don’t want him to be on medicine forever. But I don’t think I’m against it, either. Not when I see what kind of good comes from it.
If you are having aggression issues with your child, it may be something to look into. This is just our story. Make sure you understand the risks involved and weigh those before making such a decision. But after hearing stories of families calling 911 because they were afraid of their 7 year old, I figured it was time I say something about the medicines. It doesn’t work for everyone. But it could work for your child.