As we conclude autism awareness month, I wanted to write about my experience with psych meds for my autistic son, Trey. I imagine that challenges are had by all when it comes to finding the right medication no matter what the issue, but this is especially challenging in the special needs’ population. Autists are given meds that are used for those with mental health conditions. It is because there is really no medication to treat autism. Autists are treated for the behavioral symptoms they are experiencing not the developmental condition that they have. This is understandable given that their issue is a neurological difference, but it does make it tricky when finding the right kind of medication for someone with this condition. To tell you the story of my journey finding the right medication for my son is a long one. My son didn’t get diagnosed with autism until he was age 3 years and 3 months (yes it was a pivotal time, so I remember his exact age). He had some serious behavioral issues due to his age and him being nonverbal. Those issues especially became more obvious when he reached kindergarten. When his hyperactive and impulsive behaviors became too much to bear for his schoolteacher, I started to look at medication. It was not my first choice, but my last resort. I have never been fond of medication for children, so this was something I begrudgingly did to keep his teacher quiet and make the school day smoother for Trey.
Well, when I tell you I almost gave up with medication for Trey is an understatement. First of all, primary care physicians are not equipped to give consultation on mental health meds. They just are not. They are general practitioners who know a little about everything physical but not a whole lot on the mental at all. I had to give Trey’s doctor suggestions on medications to consider for him with her kind of nodding her head and going along with whatever I said but not giving any feedback. We first looked at stimulants for Trey due to his short attention span, impulsive behavior, and hyperactivity. Guanfacine was the first medication I remember trying because it was long-acting and could hopefully get him through an 8-hour school day. It was the liquid version since he would not chew pills or swallow any medication. I had to use a medication dispenser to shoot it into his mouth. The doctor explained that Guanfacine was a blood pressure medication and that he would need to come in for regular appointments to make sure it didn’t make his blood pressure too low. The whole time we were in our office she was on the computer looking up stuff so I figured out pretty quickly she had no knowledge of these medications so it would be up to me to really pay attention to how this worked with his body. This medication was a complete disaster! Within a week (or two, and I’m being generous), Trey had gone from a hyperactive silly child to an aggressive one. He was biting children for no reason! This was not something Trey had ever done to children (maybe to adults that made him angry when he was a toddler) and to hear that he was hurting other children made me act quickly. I took him off that medication immediately. I informed his doctor and took him in for another appointment because I didn’t know how taking him off that medication would affect his heart health. She checked his blood pressure and said he was fine and apologized for the results of the meds. I swore off medication forever and proceeded with dealing with whatever complaints the teacher made. When the teacher started to complain about Trey’s behaviors getting in the way of his learning, I felt helpless. Of course, I didn’t want Trey’s development to be impacted by his behavior. Trey was 5 and couldn’t sit still in his seat long enough to do the mountain of paperwork his teacher expected him to complete. I swear these traditional school settings expect little children to be like employees and pushing paperwork. Trey’s teacher was recommending medications I should try such as Risperdal because the EC facilitator’s son was taking it and it was doing wonders for him. I knew of the side effects of this medication (weight gain, developing breasts in boys, and lactating breasts) and outright refused for to allow my son to try this. Plus, with it being an antipsychotic, I thought this was not appropriate for my 6-year-old son to try because of his young age. I complained to the EC facilitator about my son’s teacher’s high expectations of him because I knew she was an autism mom and could be an advocate for my son. She tried to get Trey’s teacher to consider other ways to help Trey learn but even in the special needs setting they do a “one size fits all” approach. So, I was left with no other choice but to consider medication again even with the adverse side effects we had last time.
So, back in the doctor’s office we were 3 months later. I told the doctor I was super hesitant about trying medication again but had to do something. Guanfacine was out but what other options did we have given the concerns I described to her. We settled on Methylphenidate which was a short acting stimulant in chewable form. Trey would take one and a half each day. I swore to her that if I observed any negative changes in my son that I would quickly take him off. I couldn’t go through what I had experienced again. Luckily, I didn’t. Because Methylphenidate was fast acting, by the time I gave it to my son an hour before school, it was already taking effect by the time he got there. The teacher’s complaints dissipated. I saw results in my son when I gave it to him on the weekends when he was home. There were no impulsive behaviors such as before. We had found our medication. Now the medication isn’t perfect. It gives about 4 hours of peace and quiet on a good day. Trey is calmer and better able to take direction. After that, he is back to being Trey (which is not bad since he’s pretty cool). Of course, getting older has to do with it (he’s 10 now) and he is on a higher dose (2 pills a day). I realize that I’m going to have to increase the dosage as he gets older but I’m ok with that. My long term plan is to take him off this medication once he practices more self-control when he is in class and other settings. I have to see what he will be like when he goes through puberty. For right now, he will stay on the medication because it works for him. I want to inform you of a recent hiccup with the medication that I think it’s important to note. The pharmacy ran out of a certain manufacturer’s Methylphenidate and gave me another one instead. I didn’t realize this until I got home and noticed the pills looked different. I still had some of his old medication left so I gave him some of that and then the new one when I ran out. Then I got a call from his teacher that Trey had taken his penis out in class and peed on a stack of papers in front of entire classroom. This was unlike anything he ever did before. The teacher and I were both shocked and I swore that it was the new manufacturer’s medication and stopped it immediately. Well, I had no more left of the old one so I had to go back to his doctor to see what I could do. To make a long story short, it was a big mess that involved his insurance, the pharmacist, and his doctor. The manufacturer no longer made that medicine according to the pharmacy, so we had to go back to the doctor to look at our options. His new doctor (a very lovely woman who admits her ignorance with psych meds) suggested long-acting Methylphenidate in pill form that we could sprinkle on his food or put in his water and pleaded for us to consider a psychiatrist. I said I would consider a psychiatrist if this medication caused my son to have any behavioral issues. We agreed to meet again in a month.
Well, it actually had the opposite effect. There was no change in Trey. It was like he had not taken anything at all. I listened to my intuition and after doing some more research, put him back on the Methylphenidate chewable from the new manufacturer that I still had left from the pharmacy. I decided I would closely monitor him while he was home on spring break to see if I noticed any changes. I realized that it was not the new manufacturer’s medication that was an issue but that I had mixed two generics from two different manufacturers. Do not mix generics of medications. I read that this can cause some serious side effects and that it is better to stop one completely before starting another one. Trey is back to himself, and I have learned a grave lesson. I realize that eventually I am going to stop having to play doctor myself and turn this over to a psychiatrist. That will be another long road to finding the right child psychiatrist that also takes our insurance. I thought I had found one but had to cancel my appointment due to the doctor being out of network. Good psychiatrists are hard to come by, so I think I’m avoiding dealing with that headache until I have no other choice. I know this has been quite a lot to digest but I write for those parents who don’t know where to turn for their special needs children. Take it from a veteran who has been on this journey for 8 years now and wants you to avoid the missteps I have taken. Psych meds for children, especially ones with disabilities, is definitely something to ponder not jump into quickly. Research your options so you are informed but turn to an expert like a psychiatrist. They are the best ones to guide you through the challenges you might face. Also, don’t give up quickly either. If the first few medications don’t work, understand this is a marathon not a sprint. You may have to test out a few before you find the right fit for your child. But if the costs are too much to bear (adverse side effects included), abandon ship and return to this mission if and when you need to. Don’t beat yourself up for any mistakes you might have made but continue to communicate with your child’s doctor, so you have support. Feel free to comment below on you or your child’s challenges with psych meds or better yet, your successes! You don’t know how valuable this information may be to someone else. I welcome an open dialogue on this topic. I know how valuable it would have been for me to have learned this from someone else. I want to create an inclusive community that shares our struggles and also our successes. There are many take-aways we can get from listening to each other’s stories so feel free to share!
Lots of love and light,
Kira
