Whether you’re considering medication for yourself as a neurodivergent adult, or for a child, it can be a difficult and complex decision. Today, I’m talking about my personal history with medication as an autistic ADHDer, what considerations went into my decisions, and how I confronted medication stigma.
Contents
- 1 Show Notes
- 2 About Neurodiverging
- 3 Transcript: The Medication Question | The Neurodiverging Podcast
- 3.0.1 My Medication Story as an Autistic Adult
- 3.0.2 An Autistic Experience of Birth Control
- 3.0.3 Anxiety and Depression as an Undiagnosed Autistic Woman
- 3.0.4 Confronting My Stigma Against Psychiatric Medications
- 3.0.5 How SSRIs Work and What They’re Prescribed For
- 3.0.6 How SSRIs Support Autistic Challenges
- 3.0.7 Choosing to Medicate a Child as an Autistic Mother
- 3.0.8 Medication as an Accessibility Aid
- 3.0.9 A Reframe for Medication Stigma
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Show Notes
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About Neurodiverging
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Transcript: The Medication Question | The Neurodiverging Podcast
DANIELLE: Hello, and welcome back to The Neurodiverging Podcast. My name is Danielle Sullivan, and I am your host. Today, we are talking the medication decision. How do you make a decision about whether going on an SSRI or similar medication as an autistic person is a good idea for you?
As someone who’s on medication myself, quite proudly, and also someone who’s had to consider the decision for one of my younger children, I have lots of thoughts, and I just like to share them because I know it’s a difficult topic.
Before we dive in, I do want to thank my patrons at Patreon.com/Neurodiverging. Patrons support the podcast and our ability to offer coaching to lower-income clients, especially a lot of us who are on disability, by throwing a couple of bucks in the pot every month in exchange for some really excellent perks. If you are interested in learning more, please go to Patreon.com/Neurodiverging. We appreciate your support.
All right, medication. So — I cannot tell you the number of clients that I have worked with who have been considering medication and have had a lot of stress about the decision, whether that is medication for yourself as an adult human being or medication for a young kid, which comes with an additional set of complications.
My Medication Story as an Autistic Adult
So, I thought it might be helpful to just talk briefly about my own medication journey, how I think about the problem, and some things that might help you make the decision for yourself. I do want to say upfront, in case you’re new and you’ve somehow just bumped into me, hi, I’m Danielle; I’m a neurodivergent adult and a late-identified autistic and a coach, a certified coach — I am not a doctor. I am not a psychiatrist, so I’m not going to be talking about specific medications in this podcast just because I think choosing which specific medication is going to work for you should be between you and your mental health professional. I am not talking about dosing, I am not talking about brands, I’m just talking about the general decision of adding a medication to your mental health routine.
So, if you are considering it, I hope this personal overview is helpful, but also please go talk to an actual professional human who’s gone to school to learn more about your specific options and what’s going to work best for you. Because just because it’s suited me does not mean it’s going to suit everybody.
An Autistic Experience of Birth Control
Okay, so when I think about my own personal history with medication, I think the first thing I have to talk about is birth control, right? I went on birth control pill form when I was a young adult to prevent pregnancy, and I couldn’t even tell you now which ones I tried, but I tried somewhere between, I want to say, five or six different prescriptions because I had so much trouble with the side effects of prescription birth control. And I am so grateful it exists, but also, I had some challenges.
And so, just to give you an idea, some of the challenges I had were — And I was undiagnosed autistic at the time, and I was a young adult, I had just transitioned from college and into kind of the adult working life, right? And, so, there were other things going on in my life that could have contributed to some of this, but some of the medications that I was on for birth control created significant anxiety, created depression, I had suicidality with one of them. So I had some really negative mental health side effects that were related to the medications. And as soon as I changed medications — I had a really helpful primary at that time who believed me when I told her about these symptoms I was having, and when I was switching or trying to find something that worked for me, I would sometimes be okay for 4-6 months on a medication and then start experiencing symptoms of depression or anxiety, and then sometimes I’d be okay for another 4-6 months on a medication and then start experiencing symptoms.
The one that created suicidality for me was immediate. I was on that thing for a week, and I started noticing some very impulsive behavior and intrusive thoughts. I stopped taking it. I was like, “We need to find something else,” and those symptoms went away when I switched again, but because I had been lucky enough not to need medication for other things prior to that birth control experience, and because once I — I then switched to an IUD and was on an IUD for many years before I had my kids, and so I was somebody who wasn’t on medication for a majority of my life except for those couple of years that I was on the pill version of the birth control.
And the IUD, the one I was on anyway, does produce a small amount of hormone but is very different than taking an SSRI daily, right? I think I’ve talked about this a little bit before in my episode on PMDD, but I have what’s called premenstrual dysphoric disorder, which means that a couple of days before my period, I experience symptoms that are PMS on steroids. That I get highly emotional, irritable, angry, impulsive, and have other symptoms related to a hormonal imbalance. I’ve always had very difficult periods, but I started having these symptoms after my first child was born. And we think it was just your hormones change after you give birth, and mine, unfortunately, changed in this un-useful direction.
And so, the usual treatment for PMDD is to go on an SSRI. There are other options; it’s not the only treatment, but just in my specific case, that was the recommended treatment by several professionals that I talked to. I struggled so hard over the decision at the time.
Anxiety and Depression as an Undiagnosed Autistic Woman
Even before I had kids, I had struggled with depression and anxiety — Not to the extent of what the birth control pills brought out for me in terms of symptoms, but I was an undiagnosed autistic person, I had anxiety, I also was undiagnosed ADHD, so I had like lots going on. Just because of my age and what the culture was like when I was growing up, you were kind of taught to just suck it up and keep moving forward, and so I had never considered that my depression or my anxiety were bad enough to require a pharmaceutical intervention, and I just want to say that was not a correct thought.
That if you are thinking about trying a med for your anxiety or depression, it is bad enough. You would not be thinking about it if you weren’t in a place where you were looking for support and you had tried other things, right? People don’t just go on meds, especially if you’re somebody who’s listening to this kind of podcast (laughs). You’re a self-selecting group. You’re a thoughtful individual. You like information. I’m just speaking from what I know of my listeners. People don’t just, like, willy-nilly go on meds. It’s usually a carefully thought-out progression of events that leads to that. And if you’ve thought about going on meds before, likely, it’s because you’re having a big challenge and you’re looking for support with that.
But I was brought up thinking like, oh, everybody’s a little depressed, everybody’s a little anxious. And I’ve also talked about this before that, you know, neurodivergence runs in families. There is a big hereditary component. And that means that those of us, especially those of us who were not caught when we were kids — I wasn’t diagnosed until my early 30s, there are neurodivergent adults in my family, in my immediate and my extended family, who are not diagnosed and who would probably not self-diagnose either. As a child, that meant to me that what I was experiencing was something I was seeing my other family members experience, and they were just sucking it up and moving forward with their lives because that’s what they were taught to do.
Confronting My Stigma Against Psychiatric Medications
And so that assumption that, oh, I just need to suck it up and keep going was sort of passed down to me. And I also encountered a lot of stigma around psychiatric drugs from one of my family members, who was a nurse and is very pro-medication in a lot of senses, but because they worked in the ER for many years, the psychiatric medications they were most often using were not things like SSRIs. They were things like antipsychotic meds, which are not really good for anybody — That’s a personal opinion.
And so that sort of engendered in them a little bit of a fear — a reasonable one, I would say — of psychiatric-related medications. And even though SSRIs are very, very, very safe for the majority of people and can be given at very, very low doses, I sort of inherited this stigma against psychiatric medications from this family member.
When I was diagnosed with PMDD, it was like, “Oh, this is really the only option for handling these symptoms.” And because I had young children, I felt very motivated to find a way to become less irritable and become more stable, mentally stable, because you can’t freak out at a two-year-old. You just can’t do it. It’s not acceptable, right?
When I was going through problems on my own, that was like, “Oh, I should just suck it up and move through,” but when it was like my kid was going to be affected by my problems, that’s when I was like, “Okay, now we’re going to try meds.” I really wish that I had been able to consider meds sooner because I had to try a couple of different prescriptions, I had to try a couple of different dosages, right? But once we found the thing, I have been on the thing for approaching 10 years, and it has changed my life immeasurably.
I have had so many clients who are scared to try, and I just — Obviously, I’m not going to tell clients what to do in terms of their own medication; I would never do that; that is completely unethical. But in my heart (laughs softly), a lot of times, I really want to say, “Please just try the med. Please just try the med.” Obviously, I would never, ever say that to a person, to somebody I was working with, right? But in my experience, people are so scared, they have so much internal stigma around drugs that are really very safe.
And in my case, I had the stigma from the family member who’s in the nursing field, but I also had the stigma, sort of, from my birth control experience that I’d had this very reaction to medications in the past, and it really made me shy away from considering medications for anxiety and depression when I really, really should have been earlier.
Very recently, as of the time of this recording, I actually ran out of my meds for about a week and a half, which is the first time in almost 10 years that’s happened. Well, I was a little slow on remembering to refill, and then there was an issue with my doctor’s office where they denied the refill, and I had to call them and sort it out. And it was a clinical error, but it resulted in me not having my meds for a week. And luckily, I’m not somebody who is going to die or have some significant negative outcomes from not having my meds for a week.
How SSRIs Work and What They’re Prescribed For
So if you’re not familiar, the way SSRIs work — and I’m speaking from a layman’s perspective, right? SSRI stands for selective serotonin reuptake inhibitor — a positive mood is created by your brain releasing serotonin into your bloodstream. Basically, what’s supposed to happen is your brain releases serotonin into your bloodstream, and then after a period of time, the serotonin has done its job, and your brain grabs the serotonin back out of your bloodstream, and that’s the reuptake, right? So it drops it down, and then it uptakes it back, right?
What a selective serotonin reuptake inhibitor does, is one of the theories is that people who have depression, anxiety, et cetera, are either not producing enough serotonin, like your brain’s not dropping enough in there, or it’s getting sucked back up too fast before we have the positive effect of serotonin, and so what the inhibitor does is it stops the brain from reuptaking that serotonin quite so quickly. And so we get more serotonin for a longer period of time, is the theory, and that is what creates the improved mood, okay? So, SSRI, selective serotonin re-uptaking inhibitor, it’s a whole category of drugs.
We know that SSRIs work, but we don’t know exactly why they work or exactly what the mechanism is for what they work. But a week is more than long enough for me to start feeling that the serotonin in my body is not working the way that it’s supposed to work. And it was really interesting because I haven’t been off meds for like I said almost 10 years, and what I noticed in that week was that I got so irritable, and so grumpy, and so highly sensitive to noises, especially. And it really reinforced for me how much I need the meds. Because when you feel better, especially for a long time, you start to think, “Oh, maybe I don’t need the meds anymore.”
And I never got so far as to talk to my doctor about it, and I also know that just because you feel better, it means the meds are working. So, I know that there’s this thing that humans tend to do of saying, “Oh, I don’t need the meds anymore.” We stop taking them, and we start feeling crappy again, and I wasn’t going to do that to myself. But there’s still this little voice in the back of my head that was like, “Oh, maybe you don’t need them anymore,” and then I didn’t have them for a week, and I was like, “Oh, gosh, you need them.”
How SSRIs Support Autistic Challenges
The other thing I was thinking about while I was off meds and experiencing all these negative reactions to my brain not having access to enough serotonin — Like I said, I got really hypersensitive to noise and overstimulation again and vibration. Those are my sensory triggers. I got very irritable. I started wanting to go to bed at like 7:00 PM again and just hide in the covers because of feeling overstimulated very often. I was a little shorter with my kids. I actually had to I sit them down and be like, “Listen, I have this medicine that (laughs) helps my brain feel calm and happy, and I don’t have my medicine right now. And if I’m grumpy, it’s not because of you. If I say something rude, you’re allowed to say, ‘Mama, that is too rude,’” because I didn’t want them to feel like it was their fault if I was being snippy because I knew I was going to be snippy.
What it really reinforced for me was that — And I knew this logically, but I hadn’t really thought about it — I didn’t get better, I didn’t recover from autistic burnout until after I was on the meds. And there’s all sorts of reasons that that could have happened in terms of what was going on with my kids, what was going on with my health, what was going on with my relationship, what was going on with my living environment, right?
There were all sorts of contributing factors that enabled me to recover from autistic burnout once I was identified. But one of the things I hadn’t given enough credit to was that the meds and the SSRI specifically allowed me to develop higher levels of basic skills than I would have been able to do without meds. Things like emotional — I’m alexithymic, so things like emotional intelligence, developing my communication skills, starting to do the anti-ableism work, including reducing stigma against meds, right?
But starting to do the work about how it feels to be autistic and ADHD, how it feels to be late-diagnosed, how to reprocess all this stuff. I wouldn’t have been able to do any of that if I was not medicated because I would still be struggling to maintain emotional equity throughout my day. And once I was medicated, it was like, I have a baseline of rough calm, right? I’m not like a zombie, I’m not unable to feel anything, but I have a baseline and a base — If you’re thinking of the pyramid, right? I have a base of the pyramid so that I can build all of these skills on top of it, and once I didn’t have the meds for a week, I still had all the skills, right? The skills didn’t go away, but it was a lot harder to want to use my nonviolent communication, and my active listening, and my somatic exercises when I was irritated all the time. You know, when you’re already irritated, it’s really hard to access those skills, and medication really offered that to me.
I often talk to clients about it, and I think a lot of us have an internalized stigma around medication. And there’s also legitimate reasons to be afraid of medication. Right? Like, many of us have had experiences with being hospitalized or with given meds as young adults or children that we didn’t agree to, or that were a bad fit for us, or that caused negative symptoms and that is a significant issue. And that was a lot of what went into my decision to not pursue medication when I was younger. But I also so, so wish that I had access to the medication I’m on now when I was younger. And I don’t think I could (stammers) — I think I had to work through it, right? I think I had to get to a place where it was an urgent concern, and it was for my kids’ welfare for me to do it. And I kind of hate that, but I don’t really know that I could have ever talked myself around to trying it if it wasn’t for wanting to be a good parent to my children.
Choosing to Medicate a Child as an Autistic Mother
Around a year ago, we had to decide whether to try meds for one of our kids, and it was a huge challenge. And we had tried basically everything else — I’m not going to get into it too much because I want to preserve their privacy, but we had tried basically everything else that we could think of in terms of therapy, support, parenting, yadda, yadda, ya, and we were at the point where it was like meds might really help.
Our kiddo at the time was seven, which is very young, and it really was frustrating when we only got to seven before we were considering it. Even though I am very pro my own medication and obviously very out about it, I really felt like a little bit of a failure. It felt like I had all this internalized stigma around having to medicate children, and this feeling like if you were medicating, then that might mean that you hadn’t pursued therapies enough, or you hadn’t, like, been a good parent.
There’s so much internalized bad parent stuff that we have to deal with, especially if you’re a mother, right? Like, so much of our children’s behavior is attributed to your mothering, and we internalize some of that, whether we want to or not. And I work so hard (laughs softly) to, like, un-ternalize it, and confront it, and point it out to people. And I’m good at pointing it out to clients, but pointing it out to me is still — like myself — is really hard.
And so I was really dealing with, no, you actually are a pretty good mother, this is just where we are. They might need the support medication offers. And I was thinking a lot about how medication, like I just said, offers me this base that I can build skills upon, and we were thinking, well, maybe this child needs that base that they can build skills upon.
I think there’s also this idea that we carry that meds change us as people, right? There’s this whole idea — Like the antipsychotic class of meds, like I was talking about before, have hugely negative effects on personality and can make somebody into a walking zombie, right? And they’re really only used to try to keep somebody alive when they’re having some high-risk mental health break.
But a lot of us, when we think of things like even SSRIs, even low-dose SSRIs, are thinking about how it turns you into zombies, it makes you a robot, you’re not even real anymore. There’s all this cultural stigma around medication that affects the brain. And when I was considering it with my partner for my child, there was a lot of wrangling with, like, first of all, if we put them on this medication, is that going to change them, right? Is that going to make them a different person, right? And this fear that that would do that. Even though we knew that was bunk, we still had that fear, and we really had to work to confront it.
And the other thing was like are we fully accepting our child for who they are if we’re considering putting them on a med to change their behavior and their emotional volatility? One of the big symptoms they were having was this huge inertia, this inability to do anything even when they wanted to. We were really struggling with, are we fully accepting our kid for who they are if we’re also trying to change them, and how do we balance out those needs, right?
So there was a lot more anti-ableism work inherent in these discussions and these thought processes that I hadn’t really engaged in before because it’s just so much internalized stigma around medication and around humanness, right, and what humans are supposed to look like and not supposed to look like, and how meds interact and affect that. So here’s what I’ll say: Taking meds or considering them for a child is a really big decision, and I understand why people don’t take it lightly.
Medication as an Accessibility Aid
There’s a metaphor we often use that medication should be considered as a disability aid the same way glasses are, right? That some people need glasses to see well, and some of us need meds to function better, and in many ways, they are both accessibility aids. Many of us have so much negative background with medication and with the medical systems that prescribe those medications that it can feel very frightening to try them. That said, most of the most commonly prescribed medications are really safe, right? Or you talk to your doctor and make sure they’re really safe. But the larger class of SSRIs, for example, that are often prescribed for people with ADHD, for people with autism, for people with anxiety disorders, and —
Sorry, I shouldn’t use the word disorder, but for people with anxiety, for people with depression, for people with PTSD, right? SSRIs have a long history of being very, very safe when used correctly. And we don’t always have to think of them in these huge, scary terms. So, an experiment you can try, if it’s helpful for you and you’re dealing with this ball of thoughts yourself around meds, is sometimes trying meds can be the same kind of experiment as changing your schedule is, or trying a new bus route. And it can have a lot bigger results than trying a new bus route, right? You don’t just shave 10 minutes off your traffic commute. You are able to better skill build and have a better life, and enjoy your life more.
A Reframe for Medication Stigma
But meds can feel very heavy and very permanent. And for many, many kinds of meds, again, talk to your prescribing physician. But for many meds, you can try them. You can try them for a month, you can try them for three months, and if it doesn’t want you to stop taking them, right? And if they do work, then you have another tool in your toolbox to support you in mental health challenges.
So, for me and for many other people, it’s worth doing the experiment and just trying it, and then you’ll know, you’ll have the information rather than wrangling back and forth and back and forth. I wish I would have just tried it when I was younger. And my kiddo has now been on meds for a full year, and are things 100% amazing? No, we still have some challenges, but we have had a lot of good results with the meds. And I was so scared to try them for the kiddo, and I’m so, so glad we did. I wish we had done it earlier. I think we would have avoided a lot of heartache and a lot of bad habits that got entrenched because we didn’t have the resources that the meds provide for them.
So, that’s my experience with medication, with SSRIs, as an autistic adult. I hope it was helpful for you just to hear my story and hear that you’re not alone if you’re going through this. And whether you try meds or don’t try meds, please know that there’s support out there for you, and there’s no, like, better. There’s no 100% thing everybody should do, it’s such a personal decision it’s so complicated by any other conditions that you have.
Like, I didn’t talk about this much because it’s not relevant to me, but for example, I’m autistic with PMDD, right? I have this profile. Tons of autistic people have POTs, tons of autistic people have Ehlers-Danlos. Like, there’s so many other things that can affect your health profile and affect whether meds are going to be a good choice for you that it’s impossible for me, even if I wanted to, to give advice to every single person out there, and I don’t want to. I want you to go to talk to your doctor about it. But just to say that even if it’s scary — Just because it’s scary doesn’t mean it’s not worth doing, I think is what I mean. And just because it’s scary, that means you’re being a reasonable person, and you’re thinking critically, which I support. But also it can be worth time. It can be worth three months of your life to just see, to just see if it can be good.
Thanks so much for being here with me today. Thank you so much to my patients for supporting this podcast. If you’re interested in joining the Patreon, we have some amazing perks, group, community meetings, and accountability groups, and group coaching, and group, group, group. We’re at Patreon.com/Neurodiverging. Please remember, we are all in this together.
That I was taught — My light is on a timer. Isn’t that great (laughs)?