When ADHD Medication Gave My Autistic Son Tics

Hi, everyone! We recently ran a piece by Luise, whose son has tics and possibly Tourette syndrome. Afterward, Caro got in touch. Her son is autistic (Asperger's), and he had tics too, but his showed up as a side effect of ADHD medication. We wanted to know more, so we asked Caro for an interview.

Dear Caro, your son (12) is autistic and has Asperger's. Do you remember when you first noticed that something was different?

I have to back up a little… Honestly, our son was an incredibly easy baby. He was our first, and I always joked that he was a "starter baby." He slept well and was sleeping through the night pretty early. He liked lying in his stroller or his crib, watching the world around him. He was a calm but happy kid who had no problem being cared for by other people. Looking back (and compared to his sister), you could maybe call that an early sign. But at the time, we were just happy he was so easygoing. 

We didn't start to wonder until the typical toddler defiance phase dragged on for an unusually long time. His meltdowns were intense, and they came whenever something didn't go "according to his plan." He had that plan in his head, but we had no idea what it was.

Can you describe that in more detail?

Sure. Here's an example: The doorbell rang, a package was sitting on the doorstep, and I brought it inside. But he had wanted to bring it in himself, so he'd burst into tears or get really angry. The only way I could fix it was to redo the whole thing. I'd put the package back outside, ring the bell myself, and let him bring it in. Only then could he calm down. 

At first I figured it was just a typical defiance phase. Like a 3-year-old who wants their apple sliced and then cries because you sliced it. But with him it lasted way longer than average, and it kept happening in exactly the same way in all kinds of different situations.

There was also a behavior that outsiders would call "sulking" (or even worse, "being stubborn"), and it lasted until the end of elementary school. When he was in a situation that overwhelmed him (we sadly only figured that out much later!), he'd curl up into a tiny ball and cover his ears. If he could, he'd crawl under a table or into a corner. He was barely reachable at that point, and it took a huge amount of patience to coax him back out.

How did he behave at daycare?

His daycare had an open concept with lots of freedom, so he didn't stand out. He could spend hours doing what he enjoyed (building something, or being outside) and he found his way around the set routine (breakfast time, lunch break) just fine. It wasn't until his last year before elementary school that we noticed he had trouble when instructions had several steps. New and chaotic situations clearly overwhelmed him.

When he didn't know what was coming next, he'd shut down (the "sulking") and then often nothing worked anymore. We started the evaluation process in the spring before he started school. Because neither the daycare nor the school entry exam (the health screening kids go through before starting school in Germany) flagged any major concerns (neither cognitively nor socially), he was enrolled in our local elementary school like any other kid. The first call from his teacher came after three weeks…

What kind of kid is your son? Tell us a little more about him.

Our son is a quiet person overall, and more of an introvert. He's very into tech and started using a phone and laptop early on. He writes and understands English with no trouble. He's what a lot of people today would call a "nerd," which makes him a little less conspicuous among kids his age. But he doesn't have special interests, he never lined things up, and he's never had trouble making eye contact, which is what many people associate with autism.

Even so, he had massive problems with structure at school. People often say structure is very important for autistic people. But the structures weren't logical to him. Constantly having to do things just because that's how things are done was (and still is) hard at times. The room changes, the unexpected substitute teachers. All of that led over and over to problems, and to teachers who didn't understand.

A classic example: He's still working on a math problem, but class is over. Now everyone is expected to put it away and move on to the next subject. He can't do that, because in his head he's still on the math problem. Maybe an especially caring teacher comes over, sees the problem, and kindly offers to let him finish the previous task.

But he can't do that either, because according to the schedule it's now language arts, and he may already have been told to finish up the math problem. An inner conflict builds that he can't resolve on his own. What follows is what's called a shutdown. His system powers down and he's trapped in a freeze, which through fourth grade often took the form I described above: making himself small and hiding.

What matters most for our son is as much predictability and preparation as possible. If he has that and nothing gets in the way, things just go smoothly. Getting braces, for example. Or starting middle school. But also the daily bus rides (including transfers) or going to learning therapy right after school. When he knows what he's supposed to do, he does it. But he has no plan B.

Your son was also prescribed Ritalin. Why, and how did the ADHD medication affect him?

Because he has trouble following multi-step instructions, he was also tested for ADD/ADHD. The result wasn't really clear-cut, so the medication was more of a trial. We started the "classic" way, with extended-release Ritalin. That went fine for about 3 months, and then he developed tics. First it was just frequent blinking, then he'd squeeze his eyes shut, and then came throat clearing and snorting. All of it still kind of manageable.

The Ritalin dose was increased and the tics became more obvious. Suddenly he was hiking up his shoulder and jerking his head to the left. It also really got in the way of eating, so it was quickly clear to me that this couldn't go on. At first I suspected Tourette syndrome, but in my internet research I came across hints that tics can be a common side effect of Ritalin. I called the psychiatrist and got a breezy answer that I'd have to know for myself what mattered more to me: concentration with tics, or no concentration. We stopped the medication, the tics gradually went away, and we switched psychiatrists.

So you tried other medications…

Right. About a year later, with the new psychiatrist, we tried other medications in different combinations. The range is much wider than outsiders would guess. But there is no "one" medication, and you have to try quite a few things over a long period of time. So there's definitely no quick fix, which is what a lot of people would wish for.

Luckily, the tics didn't come back with the new medication. But here's what all the ADHD medications sadly had in common: His concentration got better, but the autism-related difficulties got bigger. My son became unfriendly and incredibly sensitive, and the smallest changes completely threw him off. On medication, he got to work faster at school and could maybe follow the lesson better overall, but he also hit (long-lasting) shutdowns much more quickly. In the end, my son decided that it had to work without medication.

All of that must have been pretty hard on you, too. How did you cope as a mom?

I realized quickly that I had to become the expert on my child. I'm sure every parent whose child has limitations or differences of any kind can relate. I educated myself a lot about school (support needs, support options, accommodations, a school aide, and so on) as well as about the diagnosis and the medications. What's possible? What isn't? What else can we do? I read books and went to talks.

Up until he started school, everything was more or less normal, and then all of a sudden I was sitting in meetings every month with teachers, the after-school program, the principal. At first I agreed to everything, because I simply assumed the teachers and educators knew best what to do. Before I knew it, my child had been given the "social-emotional" support designation (in Germany, a formal special-needs status, a bit like an IEP), and an application for a one-on-one school aide had been filed. I had no time to think that it could have negative consequences for him, too.

It was absolutely incredibly stressful. My husband is far less diplomatic than I am, so I was the one who preferred to handle the conversations with the school. But after every meeting where it was once again only about deficits and problems, of course I felt awful and had huge self-doubts. Are we on the right path? The uncertainty wore me down so much!

How is your son doing now?

At the start of fifth grade, we made one last attempt with another medication, but got the same result when it came to sensitivity. My son then said clearly that he didn't want to try any more.

Shutdowns still happen, and every now and then there are teachers who think they can manage without support (he has a school coach, and one teacher is also trained in social-emotional support). But we have to accept that, too. I think he himself never saw any problems. He doesn't dwell on being autistic, and so I think he doesn't feel limited by it.

You also told us that switching to middle school had a lot of positive effects. Why was that?

Elementary school was marked by rejection, a lack of understanding, and a lack of trust from the teachers. He could clearly tell that (some) teachers didn't like him, and maybe were overwhelmed by him, too. Autistic people really aren't as unemotional as people always say. They feel things that others don't even notice, and they feel them more and more often. And they have a hard time telling their own emotions from other people's. If the teacher was stressed, he was stressed. Some autistic people then consciously decide it's better to feel nothing at all…

In the end he chose a middle school on the other side of town, where no kid from his old school went, so a total fresh start. The school is just very open in every way when it comes to neurodivergence. The teachers are warm toward him, they see his strengths, and they read him well.

His elementary school ended up refusing to take him on field trips without extra supervision. Here that was no problem. They tried it, and it worked. The highlight was the class trip in June. A third teacher came along just for him. A week, pretty far away (five hours), and without a phone, which is how he regulates himself. And it just worked. The teachers were thrilled to see him like that, without the school stress.

Since then, his relationships with his classmates have gotten better. Now he has 2–3 friends he hangs out with, spends recess with (in elementary school he only sat inside!), and spends hours with in the afternoons, gaming and talking on the phone. He has visibly blossomed and got off to a surprisingly good start in the new school year. Right now he's enjoying summer break and is still in touch with his classmates, which makes us really happy.

You've also been through some very challenging years. What have you learned from these experiences?

Sadly, we learned the hard way that you can't and shouldn't rely on any system, and that you have to question everything. I've also learned that you're stronger than you think. And I celebrate every bit of progress and every bit of normal, simply because it's not a given. When his homeroom teacher recently sent an email to me and to the parents of the kid who sits next to him, saying the two of them talk too much in class, I just had to grin…

It has made us stronger as a family overall. I reflect on my own behavior a lot more than I used to, and I've developed much finer antennae for when something is off.

Is there anything else that's really important to you about this topic? 

No two autistic people are alike. I've read so many articles about autism, including on your blog, always hoping I'd find my child in them, and maybe the ultimate solution along with it. But in reality, I could only find him in bits and pieces, because autism has so many facets. I wish more people were aware of that, and that the picture of autism wasn't so shaped by the usual clichés.