Ep #56: Medication Shaming

You are listening to episode 56 of The Autism Mom Coach, Medication Shaming. The decision to medicate or not is one that confronts every Autism parent at some time or another. And this is among the most difficult decisions that any parent can make because as with everything else Autism related there is no one size fits all. It is more art than science. It is a lot of try, fail, try again and again and again and all of this can be gut wrenching.

These are hard decisions but they are also decisions that I see us making harder on ourselves by shaming ourselves about the decision to medicate in the first place. If this is you right now or you fear sometime in the future keep listening.

Welcome to The Autism Mom Coach, a podcast for moms who feel overwhelmed, afraid, and sometimes powerless as they raise their child with Autism. My name is Lisa Candera. I’m a certified life coach, lawyer, and most importantly I’m a full-time single mom to a teenage boy with Autism. In this podcast, I’ll show you how to transform your relationship with Autism and special needs parenting. You’ll learn how to shift away from being a victim of your circumstances to being the hero of the story you get to write. Let’s get started.

Hello everyone and welcome to the podcast. I hope you are doing well. This week we are going to talk about medication and of course, I am not a doctor and I am not prescribing medication. I’m not recommending medication. I am going to talk about my experience with medication to some extent and also that I see of my clients and folks that I know who are also in the same boat.

So let me just start with what inspired this week’s episode. So I am a member of a few Facebook groups, a couple of private ones and one is Carrie Cariello. She is the author of the book, What Color is Monday. Her son, Jack, is probably 18 or 19. He’s just a couple of years older than my son, Ben. And I originally read Carrie’s book when Ben was eight or nine and felt so seen by her discussion of her experience raising him. And I’ve been a fan and a follower ever since.

Anyhow, Carrie was sharing in a blog post, some of the challenges that she has been having with securing medication for her son as a result of shortages. She was talking about the difficulty she has every month trying to get the medication to her son in time and moments crying in the pharmacy drive-thru, been there, I’m sure some of you have too. And just how heavy all of it is. She then wrote, ‘You guys, I hate it. I hate medicating my son but it is the only way to tame the slithering snake of anxiety. It is the best option for smoothing the jagged edges of OCD.

Medicine does not take Autism away but it helps my son think, sleep and learn. If he were diabetic we would give him insulin. When he has a headache he takes Advil. Why should this feel any different?’ So when I read this I was nodding along because this is very much my experience. And I was just also observing the fact that Carrie who has a pretty decent following, a loyal following, this is her own private Facebook page, she still felt the need to explain herself a bit.

And maybe that’s not how Carrie saw it, and maybe she wasn’t but the way I read it was that she was saying, “Yes, listen, I’m looking for this medication but I really hate doing it but I kind of have to do it because of all these reasons.” And this felt so familiar to me. I do this all the time. Whenever I am asked about my son’s medication history I am so quick to say, “Well, I mean I didn’t medicate him for years. I mean we were getting by. It was fine. But I mean I really just had to. We got to COVID and then puberty and then OCD.

And this was really a matter of safety. I swear I tried all the things, I did all the things. I’m not a bad parent, please don’t judge me.” That is the context of all of that explaining at least for me. And I see it in my clients too, the clients who have medicated their child for years. It really never gets easier. And then I hear it in the fear of my clients who have not yet made that decision one way or the other, but the fear of it coming up. And I totally get that.

So first, let’s just normalize that. Why are we so afraid? Why do we struggle with this decision? Well, it’s not like insulin and it’s not like Advil because when you take the insulin it fixes the problem temporarily. And when you take the Advil you stop having the headache usually. But that’s not the same thing with Autism with brain based developmental disorders. It is, let me say it, hit or miss. It doesn’t always work. It’s a gamble. We are trying, we are seeing if it works. We are making the best attempt with informed decisions by doctors.

We’re getting genetic testing. We are doing all of the things and we still can’t know and that is gut wrenching. It is gut wrenching to be in a place where you’re deciding this is bad enough that I feel like I need to do this but I’m not positive of what it will do and there are side-effects. It feels like we are playing God with our children’s lives and their bodies and it feels horrible. And so many of us had made that decision because horrible, uncomfortable was still better than what we were experiencing and what our children were experiencing.

And so I understand why the decision is hard but for so many of us it’s what we have, it’s what we’ve got, it’s what we’re working with right now. It’s a decision that we’ve made. And I think that as hard as this decision is to make, as hard as it is to execute and to implement, we make it harder on ourselves by shaming ourselves or explaining ourselves in the way that we’ve done something wrong.

And so I wanted to dig into this just a bit. Why is this that we feel the need to explain? And so when I was thinking about this what I came up with is maybe we see medication for Autism as optional. Because unless our child has a seizure disorder or some other imminently life threatening condition we don’t really have to medicate them. I think and maybe we have bought into the bullshit that medicating our kids’ behaviors is the shortcut to doing the hard work and it’s an end run to make up for our lazy parenting.

The fact is, Autism is a behaviorally defined disorder, this means no blood test, no MRI, no CAT scan. We look at behaviors and that is where the diagnosis comes from. But for so many of us whether we grew up with it, whether we are being fed it by our parents or our neighbors or society in general we see behaviors especially in children as symptoms of lax or bad parenting. We believe on some level even if it’s not conscious, we believe that they can be fixed if only you didn’t give your child their way or you employed traditional consequences then they would stop doing whatever it is.

And oh God forbid if they do the thing sometimes and not others, that is just evidence that it’s willful and you need to get on top of it. When we are looking at behaviors from this lens then the decision to medicate, yeah, we could conflate that with, well, if we were just doing our job, if we were just enough, good enough, all of that, then we wouldn’t have to medicate. As if this decision to medicate was not hard enough, now we are feeling the need to justify ourselves to schools, to family members, to our pharmacists. I swear I tried all the things. I swear I’m not a bad parent.

Yes, we do the therapy. Yeah, we’ve tried it all and my child is still struggling. Here’s my experience and here’s the experience of so many people I’ve worked with. For some kids, medications are life enabling. This is not frivolous, it is not because we are lazy, not because we aren’t doing enough or the right things. That’s all complete bullshit. Our children have Autism. This is a brain based condition that impacts our children in ways that we are far from fully understanding.

In this moment in time medication for our children can be the difference between participating in life, sleeping, learning, socializing and being imprisoned by their fear, being ostracized because of their behaviors. I am not saying that every child with Autism needs to be on medications, absolutely not, I have no idea. I know about my kid and you know about your kid. The decision is yours. I just want to offer you that no matter what your decision is, you don’t have to shame yourself either way.

You are not a bad parent for medicating your child and in my opinion, you’re not a superior one for not medicating them. You are doing the best that you can. You are raising a child without a roadmap. And I really do believe that one day hopefully far in the future when we know more about the brain and we know more about Autism that we will look back on the parents like us and be like, “Holy shit, they were working with two cards in the entire deck and they still made it work. They still tried their best.”

There is no shame in wanting your child to struggle less. And there is no shame in wanting to struggle less for yourself, your life is hard enough. You do not need to make it harder by shaming yourself. And don’t let anyone tell you differently.

Alright, that is it this week and just a reminder. If you’re ready to do this coaching, if you are ready to have someone like me standing by your side teaching you the tools that you need to really show up in your life the way you want to even when you’re making the hardest decisions, and I mean the hard ones because I’ve made quite a few of them, I got you. Schedule a consultation on my website and let’s get started. Alright, I will talk to you next week.

Thanks for listening to The Autism Mom Coach. If you want more information or the show notes and resources from the podcast, visit theautismmomcoach.com. See you next week.