Why I choose to medicate

I look back at the behavior analyst I was ten years ago sometimes and smile. I came from a very strong ABA program. I learned from some of the very best names in the field. I practiced my skills in a variety of environments working alongside some brilliant students of ABA, and I saw how beautifully effective behavior analysis is when implemented consistently. I was a believer in ABA, as I still am today, but I believed with a fervor reserved only for those who feel they’ve already learned everything they could ever need to know.

Among my list of things I knew for certain: I’d never have autistic children as I could ABA them to normalcy before they were old enough for it to matter. I’d never spank; I’d never yell. I’d never repeat myself. I’d never try any of those crazy things other parents try that are lacking in data support. Most importantly, no matter what, I’d never medicate.

Fast forward to 2014, and I’ve done all those things, maybe all in the same day. It’s been a tough lesson for me to learn as the years have passed that you can be a good mother and a good BCBA, but those two areas don’t, and maybe can’t, always overlap.

My five-year-old never hit communication and social milestones on time. He was a sensory kid from birth, and he was diagnosed with classic autism at three. He is currently in a regular kindergarten classroom with pull-out support, and he is academically appropriate for kindergarten. My six-year-old was a 23-week premature baby who spent eight months in the NICU. He is visually impaired and has gross and fine motor delays. He has severe neurological damage. He is currently in a CDC kindergarten class with pull-out every day to spend academic time in the regular classroom. He is also academically appropriate for kindergarten, although he needs more support for basic life skills.

Don’t get me wrong, I’ve ABA-ed my kids to death. My kids are doing astoundingly well considering where they started, and ABA has been a huge part of that. You can’t completely separate the BCBA from the mother. It is, however, sometimes important to separate the mother from the BCBA.

When my six-year-old, Dax, was born, we expected he’d need help. We knew from birth he would likely need therapies and assistance. Tyler, the five-year-old? We expected he would be fine. We didn’t plan on autism. I didn’t plan for the food refusals and the head-banging and the lack of responding and the glaze over the eyes. He was autistic from birth, and I know that now, and whether it is a set of behaviors he displays that are reinforced by the environment or a neurological disorder which manifests itself in behavior, to me he is still just my precious little boy. I had him tested by early intervention at eighteen months. He had speech and OT and early intervention and me. I hoped he’d avoid an autism diagnosis. I hoped he’d make so much progress that, by the time I had him tested, they’d say, “Oh, he’s just a bit quirky, but he’s fine.” And he did progress. He acquired new skills all the time. The tantrums and head-banging and food refusals were never reinforced, and they got better. But still, at three, I sat in the room with him and watched as he was tested, and I saw him stimming and staring at himself in the one-way glass and ignoring the testers, and I knew what they would say.

I was trained to believe with enough ABA, medications are, at best, useless, and, at worst, detrimental. I secretly looked down my nose at parents who chose to medicate because, seriously, how lazy? But suddenly, when my son was three, I was holding a prescription from his neurologist for an SSRI. Going to the neurologist was not a quick decision, but one day it hit me how much more my son could absorb from his environment if he could just slow down. If I could just take that glaze away, how much better would he be able to take in all those things a typical three-year-old sees and learns from everyday? I tried. I tried and I tried to ABA the glaze away, but it was there, everyday, like a wall between me and him.

And then there is the science side. If Tyler had something in his brain causing his body to go haywire, I wanted to know what it was. Most behavior analysts don’t have the authority to change the internal environment to see the effect on behavior. I did. I had the chance to modify serotonin re-uptake to see if that changed behavior. I had the chance to try caffeine as a stimulant to see if that changed behavior. I had the chance to see what made my son tick from the inside out. I got the chance to understand my son’s automatically-reinforced behavior, which is something, as behavior analysts, we rarely get to do.

Long story short, after several months of research, weighing pros and cons, and trying less-intrusive things, I finally decided to give the SSRI a shot. I figured we’d give it two months, and we had the choice to wean him off at any time. Three weeks in he began to get into everything. He began opening doors and going outside and scaling baby gates. He started breaking things he’d never touched before. I was at my wit’s end until I realized he was doing all those things a typical child would have done at two, but he was noticing them for the first time. A few weeks later the glaze was gone, and he began asking to toilet and responding to his name and calling me “Mama.”

No, I am not advocating for medications. That’s not my point at all. The SSRI was not a miracle pill that cured autism or made him speak. It’s not for everyone. It was a educated choice made by Tyler’s team that, luckily for us, helped. My hypothesis? It altered the potency of the reinforcement of internally-driven behaviors, which therefore increased the reinforcement value of external reinforcers. It let Tyler experience and focus on things outside of himself, and it turns out he really likes people and music and playing and talking. That’s just a guess, as it always is for us when we can’t physically see it. The point is, it worked for him as an individualized element of his treatment plan, and I’m glad we did it.

In the end, what we did for him is open a window through which therapies became more effective and learning became more fluent and accessible during the years learning should developmentally occur the fastest. Two years later and he is on the same dose and has no side effects to speak of, although I do want to try a wean at some point to see if it’s still necessary. Did I sell out as a parent? As a BCBA? You may think so. But my happy, social, bright, glaze-free five-year-old is all the data I need to know we’ve done something right.

What I’ve learned through my years as a special needs parent is that my kids only get one shot at this. As a BCBA, I get multiple chances to change the world. As a parent, I only get two. I can’t mess this up. If that means eating crow, then I’ll take it with a side of potatoes and lots of wine, please.

Mollie boys

Photo credit: Dan Weese


Mollie and family

Mollie Sheppard, MS, BCBA, has been a BCBA for ten years and a mother for six. She resides near Nashville, TN, where she works primarily with adults with intellectual disabilities when she’s not focused on beating cancer. For more info, check out her blog at www.onlythesheppards.blogspot.com.


 

3 Comments

  1. Tiffany N. Kilby, MS, BCBA

    Mollie,

    I cannot express my gratitude for you sharing this piece with The Behavior Station. What an inspirational and heart-felt story. Thank you for your contribution, and helping The Behavior Station uphold its mission and purpose.

    I hope to see more of your work on The Behavior Station. We would be honored to share your wise words again anytime!

    All the best,
    Tiffany

    Reply
  2. Emily

    Thank you for contributing this well-written and informative post. As someone going through the BCBA coursework, I have the same belief about medication but I love how you’ve put it into technical terms that make it easier to share with behaviorists. I am also interested in the use of medication to reduce “emotional disregulation” but have a hard time talking and finding info about ABA providers as it’s rather “mentalistic”. Did your son experience any sudden changes in emotional level without a clear external antecedent, and did the SSRI help with that?

    Reply
  3. Mollie Sheppard

    Tiffany, thanks so much for inviting me to do this!

    Emily, great question, and thanks for your feedback. As for changes in emotional level, Ty was a miserable baby, but once he was old enough to walk I found his emotional outbursts/tantrums were usually associated with being tired or hungry. In general, since around age one he has been a fairly happy child, and the SSRI did not seem to have any impact there. Now, that being said, he’s recently been diagnosed (with an endoscopy, by a GI) with celiac disease. I do wonder what role, if any, stomach pain has played in the emotional responses he does have. He’s been gluten free for five days now, so it will be interesting to see if there are any changes as time progresses. (BTW, GF diets were another thing I didn’t really believe in… And now he and I are both diagnosed with celiac disease. Life is funny.)

    I have had clients in the past who presented with emotional outbursts for which I was never able to determine a function. They are some of the more frustrating cases, I think, because you want to help them but just don’t know how.

    I will say, working primarily with adults, one thing I’ve learned to watch for is actually emotional outbursts as a side effect of medications. Some seizure meds and allergy meds (such as Keppra and Singulair) are well-known for causing “unprovoked” outbursts. I find it’s handy to send medication lists to a pharmacist friend from time to time to have them look at the potential side effects so I can discuss the possibilities with the team.

    I hope this helped!

    Reply

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