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PDA and medication refusal (lemmy.world)
submitted 2 years ago by to c/autism@lemmy.world
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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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[–] [S] 8 points 2 years ago (3 children)

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 2 years ago (1 child)

    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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  • [–] [S] 4 points 2 years ago (1 child)

    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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  • [–] 5 points 2 years ago (1 child)

    Wild theory: maybe she is unhappy with all the changes and feels like she has no say in anything, and this is the only way how she can get some semblance of agency.

    Did she want the school change? Did she have a say in which school she is going to? Do you believe her when she says she can't do something, even if it doesn't make sense to hsyou?

    I'm asking the last question because for 35 years, it was not enough if I told people something is too much or I didn't like it. They didn't feel that way, so obviously I was just being difficult. This pattern of accidental gaslighting fucked me up big time.

    I'm still in therapy for that, and I still feel unexplainable resistance to doing some things. Nowadays, with the help of a therapist, I found success in not pushing myself, but instead asking myself why I have this resistance. The key is that I'm willing to drop whatever I'm trying to do.

    So maybe stop pushing and trying to convince her, and find ways where life currently is difficult for her and work with her to make it less difficult. If she is burned out, time may be the best cure.

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  • [–] [S] 1 point 2 years ago (1 child)

    I dont think shes unhappy, but rather overwhelmed. She says that she really likes the new school and wants to go, but just cant.

    Yes, she wanted the school change as well, but also not. She misses her friends, we try to set them up outside of school instead now, but its not the same. She was very involved in the decision to change but not to where, we applied to 3 different ones after interviewing principals and staff at several more and choose based on what they said they could do for our situation. Location as well, so that new friends she makes would be in somewhat close proximity.

    I do believe her, now. But it took some time for me to understand that i really dont understand everything and just have to take her word for it. I have been trying to explain that to her, that i might not always understand, but that i trust her. Its a process for both of us. Im sorry you had to go through that, because what I do understand is that it take a big toll one someone to be gaslit like that.

    Everyone seem to be giving similar advice here, less pushing and let her figure it out, with our help of course. Im just afraid that giving it too much time will leave her behind, in school as well as socially. To be clear, I dont care about grades or performance in school, just that she might loose connection with friends in her age.

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  • [–] 2 points 2 years ago

    Here's the deal: even if she's missing time in "normal" education, time that would normally be spent in class, it's not the end of the world. People have flunked out of school to have fun and got their bearing later. She, however, has a good reason not to go right now.

    I can tell you that me pushing myself through all the normal milestones has not helped me - you don't want to see my cv or hear about my experiences with work. It's just sad. And still, finally, last year, I found my niche.

    Allow her to be on her own timeline. Don't worry about her missing out. Allow her to figure out what fhe needs to be comfortable in life. Once I was able to set boundaries and prioritize being comfortable without constant fighting I was able and willing to compromise sometimes if I consider it important. But the base is unconditional acceptance of my needs. Without that I was in constant self-defense and senf-preservation mode.

    At some point I sat crying in my therapists office. The agency for benefits was pushing for results, and I was so frigging overwhelmed. I told my therapist "I wish I could just do nothing for the rest of the year." He looked me dead in the eye and said: "That can be arranged." I didn't think much of it but suddenly there were no appointments. They dragged their feet on paperwork and I could only tell the agency that I can't get the paperworks, I'm waiting too. They eventually gave up, and I had almost four months where there was nothing to do. I only realized in hindsight what my therapist had done for me, but that break helped me rest and heal a lot, so that we could actually work on things in the new year.

    Give her the gift of time and acceptance. Once she feels safe and heard, she is hopefully in a position to take on the challenge of therapy and getting better.

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  • [–] 4 points 2 years ago (1 child)

    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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  • [–] [S] 2 points 2 years ago (1 child)

    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 2 years ago* (last edited 2 years ago)

    I feel for you. I know that dealing with the average 10 year old can be difficult.

    I keep think of Temple Grandin. The reason is because I wonder if there are any support groups that have some people with high functioning autism in them who might be able to help you to relate or help your daughter to communicate her feelings to you. I don't know just a thought.

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  • [–] 2 points 2 years ago (2 children)

    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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  • [–] [S] 4 points 2 years ago (1 child)

    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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  • [–] 2 points 2 years ago* (last edited 2 years ago) (1 child)

    I admire you you saying that it's her choice (and she's soon going to reach the level of maturity where she should be self-advocating if she isn't already). But my question is, what will you do if she chooses to stop the meds and doesn't want to go back on them?

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