I have a 10 yo daughter with PDA autism (and ADHD) who decided to refuse her medication in early January. We have noticed a big difference from when she took them so we really want her to get back on them, but nothing we have tried works. Anyone with some experience they want to share? We are grasping for straws at this point. Help

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11 points
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I don’t have kids nor have I had to take or give medication myself, so take this with a grain of salt.

The first question I’d try to figure out is why she isn’t taking them. Maybe it’s a texture thing (my parents tried to give me omega 3 capsules, they were just generally unpleasant to take, blegh), or perhaps she doesn’t understand what they do or why they are important (autistic people like to have concrete reasons for things rather than “because I said so” or “it’ll make you feel better”).

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8 points

We have gone through a slew of different meds and delivery systems that she outright rejected because of nasty taste or hard to ingest. But these ones were never an issue, especially since we introduced pill-covers with good taste. The only reason we are getting our of her is that if she takes them, we (the parents) win and ergo, she looses. We have tried with every way we can think of to explain what they do and why they are good, and why nobody looses and everyone wins. And sometimes it feels like we get through, but when its time to actually take them its like there is a muscular block that just wont go through with it and we end up in a several hours long, one sided, war

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9 points

So I can’t say what your daughter is thinking, but I wonder if there’s some negative experiences and associations here:

  • Given that you’ve tried multiple delivery methods, some of them must have been unpleasant feeling for her.
  • These medications also have unpleasant side effects in the past.
  • Any time she does try to take it, she gets involved in a multihour fight with her parents.
  • She probably doesn’t feel any better with the medication beyond being told that she does.

Given all of that, taking the medication might be very stressful for her, even if she doesn’t know why.

While I (autistic, but without pda as far as I know) haven’t taken antidepressants, I have taken things like multivitamins. However, in my experience, actually taking pills is difficult. It’s very unnatural to me to avoid chewing on “food” and swallow things whole. I have to do it quickly before my brain figures out what is going on, and I have to be in a good relaxed headspace. Out of interest, do other autistic people here feel the same?

I like to think of autism as being overwhelmed all the time. I can’t say that that’s how everyone feels, but that’s how I model it internally. In another comment, you mentioned these issues starting when she changed schools. That’s something that’s overwhelming to any child regardless of their neurotype, even if the new one is better.

I wonder (and may be wrong) if the school change has made everything more difficult for her, which makes it more difficult for her to take medication (which was already difficult). So she gets stressed and physically feels unable to swallow the pills. And then she feels like you’ve made it a competition that she feels pressured to win (she has two options, “win” or take the meds, and she can’t do the latter).

Anyway, I’m not a professional healthcare person, just a guy online, so don’t take anything I say too seriously. Just airing out my read on the situation.

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4 points

I greatly appreciate every insight and idea I have gotten here. Im neurotypical myself so all I can do is try my best at understanding, and reach out to places like this to try and get a different perspective.

While we understand that a school change is difficult (for any child) and the things you mentioned about her previous experiences with meds, we have a hard time finding the connection. It might sound like a very obvious connection, but we have tried so many things to figure it out that the conclusion came pretty much from exclusion. So when you say there might be one still I appreciate that insight, we need to rethink that part.

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4 points

How long has she been taking these meds? Is it possible that she does not feel like herself when she takes the meds? I remember when I was taking Adderall for ADHD the symptoms improved, but I didn’t feel like the same person anymore. I wasn’t me. I eventually stopped taking it for other health reasons but when I did I felt like I was me again.

Perhaps that is what is going on for her? Maybe this medication works great for improving interactions with her but it alienates her from herself?

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2 points

I am not surprised at all if this is a major part of it, it’s not something she has expressed though (which is completely understandable for a 10 yo I think) so we are only guessing. She took these meds for a couple of months before she stopped, several others before that (that didnt work for different other reasons).

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2 points

I don’t know anything about PDA, but I wonder if she’s thinking of it in terms of “winning and losing”, if there’s some kind of “win” you could trade her in exchange for taking the meds. Like it or not, Autistic brains (mine at least) often frame the world in a very transactional and utilitarian way. There may be something she wants.

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4 points

We have tried trading it for things she wants and tried giving her some kind of choice in for example when she wants to take the meds or how, to give her a sense of ownership of the situation. We have told her it is ultimately her choice if she wants to take them or not, hoping she would feel the difference herself and choose to start again.

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1 point

That’s not how PDA has worked for me, it’s as if the action has a -infinity attached to it, and no amount of rewarding or threatening works.

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