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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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[–] 5 points 2 years ago (1 child)

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.

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  • [–] [S] 3 points 2 years ago (1 child)

    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

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

    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.

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

    To add to this aspect:

    Pandas are especially prone to reject conventional therapy, because therapy is a demand: "Healing begins now".

    Same thing goes with medication: "We expect you to get better after taking this"

    For myself, the best thing is to just let me do my thing. Put the meds somewhere where I can see them. But don't expect me to take them. If they'll help and you're away, I may decide I take them, but because I want to, not because it's expected from me.

    But that also means: If I myself feel better without the meds, I won't take them.

    (but I'm a high masking late diagnosed panda and in regards to PDA/ADHD unmedicated, therefore I have no expertise with medications of panda-children or how parents would handle that.)

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  • [–] [S] 3 points 2 years ago (1 child)

    The “We expect you to get better after taking this” part is interesting, because I was thinking that it was more in terms of "We expect you to take your medication". Taking some pills is something she can control, but "getting better" is not up to her.

    The unfortunate part of Strattera is that its a long lasting medicine, so just taking it sporadically is probably not very valuable. So something with more direct effect might be better actually, where she can have them at ready to take when its her choice. But then the ones we have tried had other shitty side effects

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  • [–] 1 point 2 years ago (1 child)

    Demands for a panda can be everything, way more than what a neurotypical or even non-PDA autistic would intuitively assume.

    The name PDA in itself is misleading, a bit. Yes, it's the most visible symptom, but not the cause.

    It's- at least in my own personal experience and some other pandas - more about the expectations of people around us and our autonomy.

    (that's why it's Also sometimes called "Pervasive Drive for Autonomy")

    We kinda need to be in control of ourselves at all time. We don't want people to decide who we are and what we do. Up to a paradoxical level where doing what people want can cause us stress and these people don't even have to be anyone else than ourself.

    That'a why I dont like gifts. People expect me to be happy. And even if it's a good gift... I just don't like it how everybody around me expect me to be happy.

    Understanding what each panda sees as something to avoid is a tough task, as my girlfriend could tell you. But if one is accepted for differences and compromises are seen as good enough, then everybody can be a bit happier.

    Example: I cannot (unless I really force myself) put the garbage in the garbage bin. I always make a few piles sorted by material on the table next to the bin. My gf does not think "This stupid person, never putting the garbage where it belongs", but "Nice, Person has cleaned up the room and put the garbage here for me to throw away". Something that is called a "demand compromise" in literature.

    I recommend to watch the following video: https://youtu.be/_abB44rPqEM

    (keep in mind that he is one single autistic individual and PDA is a spectrum in a spectrum.)

    I can also recommend some videos of "I'm Autist, now what?"

    In general I may suggest to seek resources of adult pandas. Medical literature, especially on PDA, is mostly from the outside with nobody ever listening to the actual autistic individuals. And surely much of what they tell from their live is also applicable to children.

    Regarding the meds, yeah, I thought something along the lines could be the case; that's why I initially didn't want to recommend too much from my side: I simply don't know all the chemicals and therapies etc; all my knowledge comes from adults.

    All my meds were just the "usual" stuff (cough, fever, pain)

    Therefore: I guess I cannot help you on your initial question at all, but may this text and these videos will give you a better understanding on what different pandas might see as demands.

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  • [–] [S] 3 points 2 years ago (1 child)

    I strongly relate to the gift part, christmas was always very messy before we knew and could explain to her relatives and make the adaptations needed to make it as smooth as possible.

    Lately that exact video has been passed around in my extended family as well and everyone have reacted the same, "this explains a lot". I will check out “I’m Autist, now what?” as well! Thanks for the tip.

    I have never heard the term panda in this context before today, thought it might be something cute I could tell her. But it looks like another rabbit hole of information to take a deep dive into

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

    It's a somewhat-common term (at least in my sub-bubble) for individuals with PDA traits.

    I got the term from the PDA societies flyer (here in germany PDA is quite unknown and one of the best ressources in german is the german translation of that flyer. sad...): https://www.pdasociety.org.uk/wp-content/uploads/2021/04/What-is-PDA-booklet-website-v2.1.pdf

    I cite:

    The giant panda is our ambassador, since they also need a tailored approach in order to thrive, and the letters P A N D A also provide a useful summary of helpful approaches …

    PICK BATTLES

    • minimise rules
    • enable some choice and control
    • explain reasons
    • accept that some things can’t be done

    ANXIETY MANAGEMENT

    • use low arousal approach
    • reduce uncertainty
    • recognise underlying anxiety and social/sensory challenges
    • think and plan ahead
    • treat meltdowns as panic attacks: support throughout and move on

    NEGOTIATION & COLLABORATION

    • keep calm
    • proactively collaborate and negotiate to solve challenges
    • fairness and trust are central

    DISGUISE & MANAGE DEMANDS

    • word requests indirectly
    • constantly monitor tolerance for demands and match demands accordingly
    • doing things together helps

    ADAPTATION

    • try humour, distraction, novelty and role play
    • be flexible
    • have a Plan B
    • allow plenty of time
    • try to balance the amount of “give and take”
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  • [–] [S] 1 point 2 years ago

    There is apparently a more medical part of it as well, being short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections and supposedly connected to autism in some way

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  • [–] [S] 3 points 2 years ago (3 children)

    We definitely see the connection and think we have a pretty good idea why she is not taking the meds. A big part of the problem is that we have been told by school and doctors for a couple of years now what to do, and we have done as instructed because they are supposed to be professionals. And the result is like you described, she does not trust us fully anymore.

    Im certain she feels better from the meds, but perhaps not directly. But all the fights and irritation that can be avoided has so many side effects. And we saw a very different person back when she took them, happy and at least more content. Its a bit of a catch-22 at this point and I just wish there was something we could do.

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

    I never had meds as a kid, only as an adult. I hated them, and I did not feel better. I probably behaved better around others, but I was dead inside and it felt artificial. I knew what was happening and felt awful.

    I am not going to diagnose someone online. But keep in mind meds are not for everyone and the change you see vs. What they experience may be vastly different things.

    I wish you the best of luck.

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  • [–] [S] 3 points 2 years ago (1 child)

    While i think i knew that, its so hard to not lean towards something that (from my perspective) seems to work. But you are not the only one here with this idea, I cannot overlook that and might just have to accept that meds are not for her. Thanks

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  • [–] 1 point 2 years ago (1 child)

    I could be totally off base. I only know my own experience. It's possible that hers is similar, it's equally possible that it isn't. I'm sorry that is not more helpful but I wanted to put it out as another viewpoint.

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

    Well at the very least you're willing to take a step back to assess the situation and acknowledge that meds might not be what's right for her, and by extension your family, which is an important first step.

    I can understand how overwhelming it can be with all the advise coming from every direction, and also how easy it can be to trust the "professionals", but never forget - they are just people, often trying to make their job as easy as they can, and with biases that inform that (in this case mostly capitalistic ableism - focusing on how we need to "fit in" and be "contributing" or "functioning" members of society when the measure is potential employment and "independence" rather than focusing on our well being and on if our needs are being met), and gaps in knowledge like everyone else (you'd be horrified to know how few health and education professionals get any training or education on working with autistic people).

    But all the fights and irritation that can be avoided has so many side effects. And we saw a very different person back when she took them, happy and at least more content

    This could be a sign that she is content, it could also be a sign that she is being prevented by the meds from expressing her distress. You not seeing an obvious reason for irritation (that could easily lead to a fight be virtue of simply being overwhelmed) doesn't mean there isn't one, and while not all sources of irritation can be removed from our environment, removing the ability to express the feelings they cause is not the solution.

    I just want to make sure I'm clear again - meds can be lifechanging for some people, I am not anti-meds on principle, what I am is cautious about treating symptoms over cause, as well as others' convenience over her well being, because that's unlikely to end well long term.

    Lastly, I think if you've not come across them yet, understanding the models of disability would be a good place to start:

    https://www.drakemusic.org/blog/nim-ralph/understanding-disability/

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  • [–] [S] 3 points 2 years ago (1 child)

    To be a bit blunt, I have been thinking of meds as a way to reverse a downwards spiral, a way to get out of a rut. Then we could take further decisions together with her if its something she wants to continue with or not, after "the worst" is over. But hearing what you and others here have said that might not be the best way forward. I have learned a few important things today I think, and while I was of course hoping for a "just do exactly this and everything will be fine"-advice, I was not expecting it.

    The gaps in knowledge was undeniable at her previous school, as apparent not only by our situation, but some other former classmates of hers as well. At least we left them with a lot of reading material and advice on how to handle it in the future, lets hope they read it and act.

    Thanks and I will read up on that, it looks familiar at a glance and I suspect it's stuff we have been reading about in another language

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  • [–] 2 points 2 years ago

    As I mentioned above, the fact that you are willing to take a step back to assess and correct your course is the important part, so many parents, despite what are generally the best intentions, get really defensive and refuse to even consider they might need to adjust their thinking, so going forward you've got a massive advantage. Good work helping the other parents out too!

    I think the most important thing I would say to always keep in mind is that you can't "fix" autism (not even in a similar way to how you can "fix" ADHD), so while some medications can help with some symptoms, and some therapies (not ABA) might help with others, always stop and think (and teach her to stop and think!) - are you treating a symptom to make her life better, or are you treating it to make her seem "less autistic" to the world? If it's the latter, it's probably never worth it. Embrace the autism, embrace the community (which you definitely seem to be doing), and let her be her.

    I really hope things go well!

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  • [–] 1 point 2 years ago (1 child)

    Okay, I’m going to explain something here that I don’t think any of these professionals have. Especially because school has been pushing for this too.

    When you give a person a medication solely to lessen “behaviours of concern” (fights and irritation) then that is a chemical restrictive practice. What does that mean? It’s a term that gets used in the disability field, alongside four other types of restrictive practices (mechanical, physical, environmental & seclusion). Now these aren’t always used for bad reasons. But if the school is pushing for her to take them due to behaviour issues, that’s a chemical restrictive practice. If the medication is to treat the symptoms she feels from her ADHD then that’s not one. So I think it’s important to ask yourself which is the primary reason. Using restrictive practices can be valid, but only really as a last resort.

    Source: Disabled adult with ADHD & Autism, as well as Bipolar, Ehler’s Danlos Syndrome and POTS. I’m a disability advocate as well.

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  • [–] [S] 1 point 2 years ago

    Sorry I was a bit vague there I think, school has pushed for a lot of thing related to ADHD/autism and school absence (although at the time we did not know about autism), but not medicine. More in terms of how we should behave towards our daughter, push her harder to come to school etc. Listening to them is something I regret deeply as it has definitely scarred my relation with her.

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