PDA and medication refusal
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
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").
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
So I can't say what your daughter is thinking, but I wonder if there's some negative experiences and associations here:
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.
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?
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.
I live with an adult with a similar neurotype. My experience is that the advice in this thread can all help, especially regarding "Is there anything I can do to make this more comfortable for you?" and "This is important because..." stuff. But once the PDA gets really ingrained against something, there's just nothing I can do. I just have to leave her to it and hope she comes around. As an adult, she is capable of making her own decisions...but I have no idea what to do when the person involved is a kid that might not really understand long-term repercussions. I know that the times when her parents really put their foot down ended up extremely exacerbating the PDA and ultimately led to her ability to exercise her autonomy being extremely damaged. But they also weren't...uh...empathetic about it (lots of screaming and shouting), so I don't know if putting their foot down was the problem, the verbal abuse, or both.
Sorry for the mild ramble with no real advice, just saying I commiserate. It's really fucking hard to live with an adult with that neurotype, I can't imagine trying to care for a child. I wish you luck.
I know I have not been fully empathetic at all times either, especially before we got the diagnoses. She got ADHD diagnosed about 2 years ago and autism very recently, so its been a wild ride trying to learn everything and then everything again. The PDA part definitely put a twist to it as they are diagnoses that collide in many ways from what I understand. Thank you
My wife has adhd and autism, both recently diagnosed and a mountain of trauma due to it having been undetected so long. A tendency to burn herself out.
Its hard to be understanding at all time but from what I can see, you‘re already doing better than her parents did by getting your kid diagnosed. I‘d wager a guess that you‘ll arrive at the conclusion that its best for her to not have to do anything really and start taking things in her speed so she can build her own boundaries and personality.
Getting your boundaries crushed by well meaning parents can lead to severe problems with self worth, suicidal ideation and other harsh things.
But I dont have kids (because my wife and I fear exactly that situation while dealing with our own trauma) so I get that you need to make your own decisions. Just supposed to show that you‘re on a positive track and dont need to appraise anyone but your child and yourself I guess.
Good luck.
Do you know if it's potentially because of a side effect? What medication if you don't mind if I ask?
I've been on SSRIs before and although they made me seem outwardly calm they made me feel pretty rubbish inside.
I dont mind, not sure how global the names are though. It's Intuniv and Strattera (Atomoxetin). We never noticed any side effects from these. The medication has been changed a lot to find one that works without any unrealistic side effects, some of the others had side effects related to hunger (or lack thereof) mostly. I think she is usually pretty good at describing how she feels, she says she feels the same on the inside (pretty rubbish as you described it, but at least not worst from the meds) but can acknowledge that it help with anger and irritation
Did you already check out the facebook PDA groups? They're filled with parents with similar problems, and I assume there you might get faster help as it's not only PDA/Parent specific but more active.
(And I really don't like to recommend facebook ever... or any meta-product... but well, it somehow is where many of these groups exist, and I know nowhere else that is not targeted at (adult) Pandas themself.
My wife has taken facebook route and are in several groups about autism and ADHD, but we struggle to find anywhere that is specific to PDA and ADHD (problematic duo as much of their traits go against each other). We have tried to apply whatever trickery we get from the groups we are in (and of course all the doctors we are speaking to every week) but to no avail. We have gotten lots of good advice on other parts of this though, so it has not been in vein
We have noticed a big difference from when she took them so we really want her to get back on them
We have tried to apply whatever trickery we get from the groups we are in
We have gone through a slew of different meds and delivery systems that she outright rejected because of nasty taste or hard to ingest.
The only reason we are getting our of her is that if she takes them, we (the parents) win and ergo, she looses
Can you really not see a connection?
Does she feel better on them, or is she just easier for you to deal with?
Kids know when you trick them, and every time you do, they lose trust in you. Autistic people especially value honesty and directness, we often see right through the bullshit. Stop playing tricks on her, and start working on building trust back.
She may absolutely benefit from the medication, I am not her doctor and I don't know anything about her, and I am not advocating neither for nor against it, but from what you have said, it sounds like you've put her through a hell of a lot to try and find something that "works", but it doesn't sound like it's working for her, not at this point anyway. If the medication makes her feel better, she'll probably want to be on it again in her own time, or she won't, and then either way - you have your answer.
"your medication is on the table" works for our PDA kid. As does just bribery
I can't really say anything about the autism, I myself am on strattera for ADHD.
For those meds I can say they have the side effect of making me drowsy/buzzy sometimes. A few hours after taking them. Maybe she has something like that and doesn't associate it enough to talk about it, but somewhere still feels like she needs to refuse meds because something is going on?
From a parental view, my daughter had it recently that she suddenly changed her behaviour because of random words from peers in kindergarten. Managed to explain it to her on my end, but it was still tough with a non-autistic but strong headed girl. I don't know your daughter's circumstances, etc, but such a sudden change can also come from external sources you aren't privy to. Maybe she opened up to a kid that then had a strong anti-med stance from its own upbringing? Maybe she was told somewhere that her parents are trying to make her be someone she isn't - even if it's not true. Maybe she's doing it to fit in with that kid/group? Just possibilities.
I'm not saying it has to be something like that, it could also be something completely random. It's just another two items on the list of things to possibly ask about.
I do believe that the autism part of her is whats causing the most issues, PDA (Pathological Demand Avoidance, meds being the demand in this case) specifically. But like you say she is subject to outside circumstances all the time and specifically (I should probably have mentioned this one) a change of school at the same time she stopped taking her meds. Her previous school was garbage, the new one is miles better but we still struggle with attendance because of previous experience. We have really tried connecting the school and meds situations but not come up with anything that has helped either
Is it possible that she's rebelling because she - in her mind - got ripped away from friends? Maybe she's also overwhelmed?
I would say you definitely have the trigger point in mind then. Who knows what else is going on in the new school that you as a parent don't get to know easily?
I can only think how I'd go over it with my daughter, so this might not work for you. I would leave the matter of the meds to the side for any discussion for a little bit. Figure out the rest of her circumstances first, then reintroduce the meds once she feels understood again. This can also be very soon. Just don't make the talks about the meds for now. Again, I don't have experience with PDA but if you push too much too often it can be counterproductive even before factoring that in.
You will most likely have to get a new prescription for the strattera as well, as going from zero back to full will be problematic. It needs ramping up time with the dosage. Otherwise there will be side effects that might lead to setbacks. That's personal experience.
If she doesn't want the meds, then they are most probably harmful. Stimulants are being prescribed like remedies because they are profitable. But what may work for pure ADHD threatment also affects the autistic traits in a bad way.
I think you should focus on behavioral therapy while keeping an eye on the stress level, or she will later most probably burn herself constantly out, such as I did.
(Until recently, when I decided to refuse all the stress because it's about to get life-threatening.)
I think she is burned out already unfortunately, due to medication as well as other factors (mostly school related). We are currently working with a very lean reintegration plan for school to not have it go beyond what is hopefully repairable.