Our Medication Journey

I've seen so many parents on Autism feeds asking questions about medications so I thought I'd talk about our journey, for what it is worth.

When our son was in the 2nd grade, the year COVID hit, his teacher called us in and recommended we consider that he might have ADHD and need medications. This didn't come as a surprise. We know the co-morbidity of Autism with ADHD. Having been diagnosed with ADD in my much younger years, it made sense. Consequently, I am a big proponent of medications for those that need them. I understand clearly how important ADHD medication can be for people who need it and what an amazing tool it is. In fact, I think one of its most important impacts is that it can quiet the brain so you can learn how to use other tools in your toolbox for regulation. Unfortunately, it didn't take long to realize that our son's teacher, even though I believe she was coming from a good place, conflated what was autistic behavior with that of ADHD and thought that medication would also "cure" his autistic qualities. Admittedly, at some level, I was doing the same thing - mistaking some of those autistic behaviors for ADHD and thinking they should abate.

In comes COVID. Like everyone else, when COVID hit we were sent home to fend for ourselves and we learned a lot about our family.

My role was to be the parent who worked with our son during the school day. I observed him in online school and provided the types of supports any aid would. We kept him medicated and changed things around a bit to better address what I thought I was seeing. We changed long-acting to short term because the long-acting seemed to wear off fairly quickly. We changed dosages when we experienced facial tics and extreme agitation. We added something for anxiety because of increased anxious responses our son was having to making simple decisions and moving forward with anything. We changed medications entirely thinking it would help the agitation, but only made things worse. We increased dosages trying to calm behaviors, and it didn't. Finally, we stopped.

It wasn't necessarily intentional, and it wasn't immediate. We didn't really see any difference in his anxiety, so we first weaned him off of that medication. And when he was off, we didn't see a difference either way. Then, over Christmas break, because of travel, different sleep schedules, etc., we ended up skipping a few days of ADHD medication. What we noticed is that he was less agitated, and now, he loved us again. He was singing to himself again. He was kinder and happier.

Did he move more? Yes. Did he stim more? Yes. Was his full menu of autistic flavors on full display? Yes. Did the appearance of "active listening" go by the wayside? Yes. But did it affect his attention, what he was learning in school, and the quality of his schoolwork? No! Did it affect the number of meltdowns he had and why he had them? Also, no. Nor did it affect his in-person socialization and playtime with other kids. It was very eye-opening.

In fact, I didn't tell his teachers until 2 weeks in to see if they noticed anything different and what they noticed was that he seemed less agitated, and some noted that he moved more. He is in middle school now, so seven teachers provided this feedback. To the one, each said the quality of his schoolwork had not diminished.

We aren't certain we could find a brick and mortar whose teachers would accept his "think-walking" and talking to himself -- that certainly is not the mainstream idea of "active listening." Fortunately, for the time being, our son prefers to be in virtual school (on-line, in a classroom with teachers and other students). We won't cross that bridge unless and until we come to it. It is of note that he actually chose to take his medication before testing two weeks ago; so, at some level he does perceive a benefit.

Like all things "autism" in our family, we have learned that everything is an evolution - a moving target. There may be a time when the medication is necessary for function or for focus. And when that time comes, I will support it wholeheartedly. But for now, a happy child spinning in the living room is much better than an agitated child sitting in his seat.

Everyone's journey is different, but a question to ask on the medication journey might be "what are the behaviors we are trying to address, and from where do they stem?" The answer might require some experimentation. It also may involve a balancing act between the needs of your child, the needs of your family, and the needs of your lifestyles. At any rate, there is no one-size-fits all and I hope this encourages you to not feel afraid to find the size that fits your family best, no matter how long it takes or how many mistakes you make along the way.

In school while watching the April eclipse.

Autistic Active Learning in Action!