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
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
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.
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.
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).
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
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…