For 23 years, I have been learning how difficult it can be to separate an autism diagnosis from everything else.
When your child is profoundly autistic, nonverbal, and unable to tell you what he is feeling, every new behavior becomes a puzzle.
I’ve previously shared how Skyler’s digestive issues were dismissed for years as just another part of autism. His constipation, abdominal pain and other GI symptoms were treated as if they were simply something we had to accept because he was autistic.
But I’ve come to realize that medications were another area where I sometimes heard the same message.
For most of his life, physicians and psychiatrists often interpreted Skyler’s inability to sit still, his restlessness, impulsivity and other behaviors that were considered troublesome as anxiety related to autism. And the answer was frequently another medication. Risperidone, Olanzapine, Vyvanse & Abilify were among many in the rotation prescribed to him.
And to be clear, I’m not anti-medication. Far from it.
There were times when medications helped and made life more manageable. There were times when we were desperate for anything that might help Skyler feel more regulated or make the world a little easier for him to navigate.
But there were also times when I observed new challenges and concerns that hadn’t been part of his life before. Side effects like Akathisia (uncontrollable inner restlessness) and Tardive dyskinesia (uncontrollable, repetitive & purposeless muscle movements) that are common with the meds he was on made me wonder – are we really improving his anxiety and impulsivity or just adding to it?
That question is incredibly difficult when your child can’t tell you what is happening inside his body.
But there was always a little voice in the back of my head asking whether this was the right path or decision. And if I’m honest, I didn’t always listen to that voice.
Part of the problem is that when someone has been on medications for most of his life, stopping them isn’t that simple. His body and brain have adapted to them so it’s a decision that can’t be made quickly or impulsively.
So, for a long time, I’ve stayed with what we knew.
Until recently, that little voice crept up again and we reached a point where we decided, with his medical team, that it was time to slowly see what life might look like with less medication.
And something unexpected has been happening.
I’m noticing more patience, engagement, eye contact and his personality emerging in ways I haven’t seen in a LONG time. He’s smiling and engaging with us differently – even laughing at my jokes!
And maybe that’s what I’ve been looking for all along. Not a version of my son who is easier to manage, but the version where he is truly himself.
So, while I can’t confirm that every positive or negative change we’ve seen is because of starting or stopping medication, I do know this…
Skyler is so much more than his behaviors or his autism diagnosis. “It’s part of autism” cannot be the dismissive answer to every concern or challenge our children’s bodies experience.
Listening to our intuition and watching them closely often tells us what a medication list or diagnosis never can: whether we are simply managing a symptom or finally seeing the person underneath it.
