this post was submitted on 14 Feb 2024
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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.
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.)
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