The new referral reads “severe autism, nonverbal, challenging behaviours, medications not working. Assess and treat.” Johnny is a 16-year-old lad who lives in a group home. His current medication list includes lisdexamfetamine, clonidine, aripiprazole, quetiapine and lamotrigine. He’s also on polyethylene glycol, vitamin D and metformin.
Johnny, I would like to hear from you how you ended up on five psychotropic medications. I understand you take these willingly. You let them slip down your throat with sweetened juice, without protest. I wonder if you’d be willing to take a sixth … to address these residual challenging behaviours.
So how did you end up on risperidone at age four? I guess it was the prolonged and repeated tantrums. It was never quite clear what precipitated them, was it? Your head banging unnerved your caregivers. I guess the risperidone took the edge off. I guess. You were able to stay a little longer in that preschool program.
I see you’ve already been on a number of attention-deficit/hyperactivity disorder meds. Have you found lisdexamfetamine to be helpful? They say you’re a bit less hyper on it. Is the clonidine for the hyperness, too? I guess that one is not so clear. I see you’ve been on it a few years. I’ll interpret your pushing me away as a sign that I won’t be getting a blood pressure check today. Maybe next time. I’ll leave the clonidine for now.
You don’t recall when or why they switched your risperidone to aripiprazole, do you? I guess that was quite a few years ago, too. Hard to remember whether it made much difference? What were we targeting with that one, again?
That’s quite a lot of weight gain you’ve had. It’s a concern that your body mass index is now above the 99th percentile. It’s a problem with some of these antipsychotics, as your body knows. I see you have not had the follow-up blood work recommended for someone on antipsychotics. I hear you’re a little too big to pin down for blood draws anymore. Maybe next time you go to dentistry, if they sedate you, we could try then. We do need to check your glucose and cholesterol and … Is the trade-off right? Your aggression is down, your weight is up. You get restrained less frequently. Is the trade-off right? I am not sure how to weigh this risk-benefit ratio. Restrained or medicated? Or …
Quetiapine at night. I guess that’s your sleeping pill, right? I’m not so keen on you being on two antipsychotics. They say melatonin didn’t touch you. I wonder why you’re not sleeping at night. I guess it’s a low dose of quetiapine. Maybe I will let that go for now. I wouldn’t want to mess up your sleep, your quietness at night.
So what’s up with this lamotrigine? No history of seizures. It must have been added after that incident at a previous group home, when two staff got injured while trying to interrupt your head-banging. I guess that lamotrigine study looked promising enough to give you a try on it. I see you have already taken some selective serotonin reuptake inhibitors, and even a course of naltrexone. What have we not yet tried?
Of course you have not received only medications. I understand you’ve also tried a weighted vest, but it’s not clear to me whether it helped, or whether you found any comfort in it. I understand you are struggling to make use of the picture exchange communication system. I understand that your most recent behavioural consultant is trying to help you develop some functional toileting skills, employing one of your few identified salient positive reinforcers, Life Savers.
I guess my role is to look at your medications. That’s my part — the part I need to sort out. Yet, I want to do something more. Something better. I look for enlightenment in the book I am currently reading, “The Faces of Intellectual Disability: Philosophical Reflections,” by Licia Carlson, but I get lost in the Foucauldian references and our socially constructed identities.
So I’ll review each of your medications, again. I’ll ask your guardian to set some priorities and consider whether there is a medication that will help to achieve some of those priorities. I’ll ask the group home staff to try to get you more active, to maybe burn off some of that excess weight gain, although I know it’s a challenge: you need two staff with you when you go out of your group home. I’ll ask the dietitian about improving your diet. I’ll ask the pharmacist about drug–drug interactions I ought to avoid, but one wonders what happens when it gets to five. I’ll try to reduce the doses of your various medications and maybe get rid of one or two … and I’ll try to avoid adding a sixth.
However, I will not take your silence as indicating you have come here willingly. I will not take your silence as agreement with our chosen priorities for you. I will not interpret your silence as a testimony that I have done you more good than harm. I will not interpret your willingness to swallow pills.
Footnotes
CMAJ Podcasts: audio reading at https://soundcloud.com/cmajpodcasts/170165-enc
This article has been peer reviewed.
Johnny is not a specific patient, but rather a composite of threads of the author’s experiences with a number of different youth, some of whom may or may not have autism spectrum disorder.
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