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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").
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.
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.
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.
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.
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.
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 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).
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.
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.
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.
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?
I have no idea to be honest. Pivot I guess, just not sure where to
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.
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.
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.
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.)
100% agreed on everything (also side effects can hit us different and we can struggle to explain how), even the note at the end describes me almost exactly as well..
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
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.
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
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
ANXIETY MANAGEMENT
NEGOTIATION & COLLABORATION
DISGUISE & MANAGE DEMANDS
ADAPTATION
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
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.
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.
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
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.
I am very grateful for all insight given here. While its not a silver bullet, its another perspective we can take into consideration when trying to help her
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.
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.
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/
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
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!
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
"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.
I think youre right, we have talked about it and she says she misses some of the friends from her old school. We try our best to maintain her connection with the old crew, its not very hard as they mostly live in our neighborhood, but she also avoids them to some extent because she feels guilt towards them having to stay in a school thats as bad as it is. She was involved in the decision to change school, it was a very hard one to make. But despite the problems it comes with we have no regrets because of the complete lack of interest/knowledge in the old school. We actually have a lot of insight in the new school as well, they are extremely communicative and helpful, so that helps a lot at least.
We have also already taken that step to stop demanding her to take the meds or even mention them (mostly, we can do better), very recently though. And we have a meeting with her doctor next week to discuss how we proceed
You got this! Best wishes to you and your family.
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.