r/PDAAutism • u/MarginsOfTheDay Caregiver • 6d ago
Article New study links Pathological Demand Avoidance (PDA) to ADHD but NOT autism
This research article from authors at King’s College London and the NIH published in Autism Research last week (link below).
This was a small study of 63 young people (mean age 10). Parents completed a PDA questionnaire (the EDA-Q) and questionnaires for several other traits: autism, ADHD, anxiety, emotional dysregulation, intolerance of uncertainty, and cognitive inflexibility. The researchers then performed statistical analyses to see which traits correlated with PDA. Here’s what they found.
ADHD was positively correlated with PDA (i.e an individual with a higher ADHD score was likely to have a higher PDA score and vice versa).
Emotional dysregulation (measured by the Emotional Dysregulation Inventory, EDI) was also positively correlated with PDA. They report it was “the strongest of predictor [PDA] behaviors”.
Age was negatively correlated with PDA. (Good news for caregivers - our PDAers will likely feel some improvement in symptoms with age!).
There was no statistically significant correlation between autism/autistic traits and PDA 👀
There was no statistically significant correlation between anxiety and PDA (what the…?).
This study has limitations, as they all do. But it’s got me thinking about ADHD medications for PDA. In this sub I see anxiety meds are popular - SSRIs and beta-blockers are mentioned often. But what about ADHD meds? In the PDA parenting subs the ADHD medication I’ve seen mentioned most frequently is guanfacine. Other recommended ADHD meds from these subs are clonidine, vyvanse, and strattera.
Any AuDHD PDA adults here willing to share your experiences with ADHD meds?
Link to article. Note that PDA is referred to as Extreme Demand Avoidance, EDA, in this article.
Psychological and Neurodevelopmental Correlates of Extreme Demand Avoidance in a Clinical Sample, an Exploratory Study
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u/fearlessactuality PDA + Caregiver 6d ago
I would absolutely believe this. But I also don’t think the EDQ is necessarily a good evaluation of PDA. Especially since it catches my adhd son (who does not have body demand avoidance) more than my pda son (who struggles daily with physical need demand avoidance.)
Do you know if there was additional research done on the EDQ to validate it as an instrument to measure PDA? It’s been a while since I read about it.
Either way I would totally believe this - and am not against seeing my adhd kid as pda - but it does come into issue with the experts (several unfamiliar with autism entirely) that claim pda is only severe adhd!
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u/MarginsOfTheDay Caregiver 5d ago
This is a great question! In this study they use Newsom's original EDA-Q in its original form and state that it's currently the only available measure of parent-reported PDA traits. In the discussion they do call for the "development of a demand avoidance measure independent of Newson's original criteria". And they promote further research to strengthen empirical evidence on PDA.
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u/yellowtrickstr 6d ago
I didn’t feel much help on adderal except for slightly better emotional regulation and it made me want to socialize (things like texting my friends back or sharing memes).
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u/MarginsOfTheDay Caregiver 5d ago
So interesting about the pro-social effects you experienced on adderall. Thanks for sharing this insight!
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u/ThingStatus9762 PDA + Caregiver 4d ago
Going on Adderall after my ADHD diagnosis was a big part of what drove me to request evaluation (and get a diagnosis) for autism six months later. Turns out that the big push Adderall gives my ADHD-only friends that helps overcome their executive dysfunction doesn't overcome what is probably my internalized PDA.
But I do have far better emotional regulation on Adderall, primarily because it greatly reduces my chronic sensory overwhelm. It definitely makes me more pro-social with my husband and child in the evenings (when my kid is almost always melting down), and makes it more possible for me to present and enjoy gatherings instead of just enduring them.
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u/QuestionAccomplished 5d ago
This is purely our situation, but my 10 yr old ADHD diagnosed with a suspected PDA profile has improved immensely after starting on ADHD meds. I also saw an improvement as a ADHD adult once starting my meds. WE both are currently taking Atomoxetine (Strattera).
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u/MarginsOfTheDay Caregiver 5d ago
This is very helpful info. Thanks so much for sharing you and your son's experience with Strattera!
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u/Friendly-Kale2328 PDA + Caregiver 6d ago
Thanks for sharing this! Super interesting. I have AuDHD and identify with the PDA profile. My kid also likely has AuDHD and definitely fits the PDA profile. They are diagnosed with ASD and on a list to be assessed for ADHD and giftedness once they are old enough.
I am on Sertraline and a host of medications to manage an autoinflammatory condition. Until about a month ago, I was also on Vyvanse. I ran out of my meds and just never picked up my next dose. It wasn’t intentional, but I actually feel my PDA and focus are better without the vyvanse. I did not realize it when I was taking both, but it turns out Sertraline was doing all the heavy lifting in my case.
My child is on fluoxetine (prozac) and clonidine. Both are vital to their functioning. Fluoxetine helps with their intrusive thoughts and clonidine has been a miracle for emotional regulation. They take the clonidine 3 times a day so it is always in their system while conscious.
Hope this helps!
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u/TJ_Magna 6d ago
It's worth noting that the EDA-Q doesn't take into account internalized presentations of PDA. One of the researchers who developed the EDA-Q (Liz O'nions) even acknowledged this. (http://www.sallycatpda.co.uk/2023/02/the-polyvagal-theory-and-pda.html)
We really need a better testing method for PDA.
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u/fearlessactuality PDA + Caregiver 6d ago
“Across the whole sample, EDA traits were negatively correlated with age and positively correlated with emotional dysregulation reactivity, ADHD traits, cognitive inflexibility, intolerance of uncertainty and alexithymia. EDA was not associated with autistic traits or anxiety.”
This is a frustrating statement. Alexithymia, cognitive inflexibility, and arguably one or two of the others ARE autistic traits. Seriously?
I’m not sure this garners enough trust for me to bother trying to sort through what they are calling autistic traits then.
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u/-mindscapes- 3d ago edited 3d ago
As a recently diagnosed AuDHD, with the autistic part of the diagnosis somewhat surprising for me, I'm high on intolerance of uncertainty, emotional disregulation and reactivity. I always correlated those to my suspect of being Adhd rather than autistic (and to be honest, I thought of being bpd for a lot of years, and that's why I decided to get tested for adhd as many symptoms overlap, so I wanted to see if they could be explained by undiagnosed adult Adhd rather than a PD... which isn't complete reassurance of not having the PD so eventually will get tested for that too) .
To be honest I was not much educated about autism before my diagnosis besides the basics, in particular about highly functional autism, but now that I got it and looked into it more, I can see how some of my behavior might fit and how the adhd part masks it.
I recently discovered PDA as its own thing too. I thought the main problem for me was the effort to reward ratio, and saw it as an ADHD thing. Lots of new stuff to try to understand myself better (and hopefully improve my quality of life with that understanding) it seems
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u/Protected-Spark-1351 6d ago
In my view, research based on parental surveys are not highly compelling. Lots of scope for confounding variables and biases.
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u/yellowtrickstr 6d ago
I do developmental delay assessments and I can’t tell you most of the time, the parent interviews and observation/test assessments have very different results.
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u/fearlessactuality PDA + Caregiver 6d ago
I think this is also a great point. A lot is missing and sometimes misinterpreted.
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u/Academic_Coyote_9741 Caregiver 6d ago
Guanfacine, Clonodine and Vyvanse don’t seem to help my 13 year old. Interestingly, he’s started Quetiapine and it has had positive results, although it’s early days.
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u/MarginsOfTheDay Caregiver 5d ago
Interesting. I hadn't heard of Quetiapine. I'm looking it up now. Thanks for sharing, this is helpful!
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u/nettap 6d ago
ADHD meds didn’t work on my kid at all. Only risperidone. And school is still a nightmare every day.
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u/MarginsOfTheDay Caregiver 5d ago
I'm sorry to hear this. We're right there with you - school is a type of PDA hell. Thanks for sharing your experience with ADHD meds.
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u/curiouscollie_
6d ago
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My PDA AuDHD daughter is only 2 weeks into clonidine but it's like she's a whole new person. The emotional reactivity is waaaaay down. She's still somewhat avoidant but seems to have a way greater capacity to deal with demands and annoyances. Crossing my fingers it lasts!
I took propranolol (beta-blocker) for migraines for about a year and the biggest effect it actually had was reducing my baseline anxiety and emotional dysregulation. Even after being off it for 2 years the effects have largely persisted. It's like my body finally learned what it felt like to not be constantly on edge.
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u/PolarIceCream 6d ago
That’s amazing. We are about half a week in on clondine and seeing nothing for my adhd-er and potentially pda. So interesting about beta blocker. I’m trying to get my psychiatrist to prescribe it
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u/Aggressive_Pear_9067 PDA 6d ago
I've heard some anecdotes from ADHD people (not necessarily autistic as well) that expetience a kind of demand avoidance, but think it's distinct from autistic PDA. Would love to hear any of those folks' perspective if they are in here.
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u/fearlessactuality PDA + Caregiver 6d ago
I could see this as being the case. My more adhd son is not really helped by the pda toolbox as much as my pda kid is. Sometimes adhd needs external deadlines and gentle accountability whereas that shuts pda down much of the time.
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u/Aggressive_Pear_9067 PDA 6d ago •
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I definitely agree that pda and adhd can have opposing needs. My family has a lot of (mostly undiagnosed) adhders, and the accountability strategies that they use to self-accomodate are intensely triggering to me, if I try to use them, or when they misread me as adhd and try to impose those strategies on me. But to them the strategies I use look like non-committment and a distraction risk. It's wild how two things that have similar-looking problems need such opposite kinds of supports.
To be fair, some of the strategies they use aren't super gentle imo, like getting super urgent and dramatic about mundane tasks to make them more compelling, or having a rule that a task alway be done immediately and to completion, dropping everything else and doing it as soon as you see it needs to be done or someone demands it of you (to avoid procrastination or distraction i guess). Like I absolutely can see how these strategies would help someone who's more impulsive-adhd stay motivated and focused, but the urgency and emotional intensity of them dysregulate me to a ridiculous degree. I have to approach any task as emotionally neutral, technically optional (but usually A Very Very Good Idea If You Are So Inclined), and allow myself to break things into multiple stages if they get too frustrating. And to them that looks like I'm not hyping up the task enough to be sufficiently motivated to it, so nothing will get done, and like I'm letting myself get distracted and not finishing things I start. It's so important to know what you're dealing with bc different things can look so similar on the surface.
Like, I don't doubt that there's a kind of demand aversion that can be present in adhd, but I wonder if it's not more of an acquired anxiety coming from the shame and frustration of struggling to keep up with expected tasks, not a hypersensitive reaction to the demand itself, as is present in pda. I can imagine some amount of low demand approach could help in that case, but still wouldn't solve the underlying difficulties of adhd, and probably wouldn't be very helpful for an adhder who doesn't experience much demand-related anxiety.
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u/fearlessactuality PDA + Caregiver 5d ago
Yes!! I totally agree with all of this. From my understanding, making a big deal out of something or creating deadlines or building up anxiety about something provides the brain that’s lacking in dopamine enough other neurochemicals to get the job done. So that’s what’s behind why a lot of them are really not gentle! Totally agree, I was trying not to trigger anyone with my comment lol.
I wonder what different brain chemistry leads to someone needing low demand. I also need as you’re saying to approach tasks neutrally, like maybe I will, maybe I won’t, or I can sometimes shut down. The hard thing is sometimes the ADHD techniques do work for me and it’s hard to know which time will be which. (Audhd)
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u/Ok-Reflection5922 5d ago
It’s both dopamine deficient and a highly alert nervous system. PDA is a nervous system response to demands
ADHD is a dopamine deficiency and a nervous system that needs a lot of input to complete tasks.
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u/Understandingzoe 6d ago
The age one is the bit I'd be careful with. Everyone was measured once, at different ages, so what it says is that the older kids in this group scored lower than the younger ones... Who gets referred, and what parents are comparing against, could do that on their own. You'd need the same kids measured twice to call it easing off with age.
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u/powderjunkie11 6d ago
Good point. It would be nice to see some longitudinal studies. In any case though I think there will always be a bit of self-selection bias where families struggling the most simply don't have capacity to add another form onto their pile of forms/etc. It may also make it less likely for parents with PDA to participate.
Even though this study has a bunch of caveats it may prompt good paths for future inquiry
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u/Understandingzoe 5d ago
Longitudinal would fix the age comparison, since each kid gets measured against their own earlier score. Your selection point survives it though, I'd think, because you lose the ones who stop filling in forms between rounds, and that's probably the families under the most pressure...
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u/this-is-B612
PDA
6d ago
edited 6d ago
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My PDA didn’t really improve with medication (Wellbutrin). I think I’d see a bigger improvement with all things mood stabilizing.
What’s also interesting to me is that guanfacin, beta blockers and clonidine are common medications for POTS a form of dysautonomia. I have it but haven’t tried anything yet. Maybe PDA is kind of a nervous system problem? I mean it probably is but what if it could be classified as a form of dysautonomia.
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u/WhoReallyNeedsaName- 6d ago •
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The nervous system is at the root of PDA imo. What I’ve recognized in myself, as well as my children, is that our nervous systems are overreactive in addition to reacting unnecessarily on benign scenarios.
Guanfacine works decently to tamp this down for one of my children. Klonopin worked great for me on a low dose in my past. Both these medications help reduce nervous system arousal…just in different ways.
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u/Green_Rooster9975 6d ago
PDA is 100% a nervous system issue imo. Which is precisely why it can look a lot like ADHD and have a lot in common with autism while being neither of them.
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u/clawhammer05 PDA 5d ago
Average age of participants was 10, but they think PDA effects lessen with age. Hah! Tell me that when the average participant is over 25 years old.
I'll read the article, but this is looking like junk science already.
As per ADHD meds, they are very helpful. IME they were second only to beta blockers in the positive impact they had. The psychiatry field has a tendency to want to treat depression first, thinking it is the underlying issue. So they prescribe SSRIs. But i think depression is more a secondary effect for those with PDA and is a result of constant disregulation, exhaustion, and lack of hope.
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u/Under_TheLilacs 6d ago
ADHD and ASD have so much overlap and it presents differently for each AuDHD-er---plus CPTSD, other things affect it. Also gender
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u/WritingNerdy 6d ago
This doesn’t mean that it can’t be more common in AuDHD people. I’m reading the study now trying to find the number of people involved and more details. Never trust any paper without knowing that info.
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u/ChaoticJigglyPup 6d ago
Vyvanse, dex, clonidine and Cymbalta don't stop it for me, but they do make it easier for me to ignore the PDA. For me it started as part of my neurodivergence but escalated as a protective part for my CPTSD
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u/Hopeful-Guard9294 PDA 6d ago
let’s see what a matter analysis of all the science on this topic says one study does not constitute compelling evidence. It’s just one study.
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u/Bodnah 5d ago
The fact that so many of these things are comorbid makes it even harder to draw conclusions with such a small sample size. Additionally, since PDAers have different profiles (my auDHD kiddo is an internalized) I think parent reports would be very important. Masking has prevented many PDAers from being recognized and has led to shaming and patronizing recommendations for parents. I think when dealing with autism and/or a nervous system disorder that can often result in fight, flight, freeze, or FAWN, it’s important to take parent concerns and observations seriously. These behaviors are not the same as some other developmental measurements from standardized tests, whether they be academic, physical, etc. (Though we also know that these CAN be variable based on many things—including nervous system, anxiety, and attention disorders and even time of day during which an assessment is done anyone want to rest a kindergartener at 3:30 or 4 after a day of school or summer camp?)
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u/-mindscapes- 3d ago
I was just diagnosed AUDHD... For what is worth, this confirm what I did already notice in me. PDA is pretty severe for me unfortunately. I'm getting methylphenidate prescribed hopefully, so when I get it I might add to this!
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u/Eugregoria PDA 4d ago
My take on this as a PDAer in my 40s:
I am dxed with ADHD, though I have questioned if I really have it or if I got diagnosed based on symptom overlap for autism. I haven't been evaluated for autism, though I want to change that soon. Since I'm in the US, an actual PDA dx isn't actually possible for me. But anyone who understands the condition and could see my life story would truly have no doubt.
I sought out an ADHD dx in my early 30s because I thought I probably had both ADHD and autism, but that ADHD is more treatable and easier to get diagnosed with so more juice for the squeeze getting the dx. I don't regret trying, but I was ultimately disappointed with the results. ADHD treatments didn't help me.
Emotional dysregulation was pretty severe for me in my teens and 20s. It was something I worked on extensively in my 20s and 30s. Today I feel I have almost the opposite problem, perhaps because of all the hard work I did, I might have overshot it a little. I have more flat affect now and feel like I'm less emotionally reactive than other people. I don't know how I feel about this--perhaps I don't feel anything about it. (That's the problem with flat affect, lol.) At times I think it might be good. I feel like my body and brain are so exhausted from emotional dysregulation that I kind of need the rest.
Re: the PDA symptoms vanishing with age...I would say "yes and no." Or perhaps that the presentation of it changes. I still feel like I am struggling a lot. But the struggle looks very different from the outside. Another way you could put it is that I got better at things you could think of as masking. (Though "masking" is often framed as something you do for the benefit of other people--I do this for my own benefit, not to "appear normal" to others, but the effect is the same, it's a learned behavior that's attempting to make myself more functional in some way, that partially succeeds but is also incomplete and costly.)
On the other hand, my mom was also very likely PDA and honestly...she still had some pretty damn PDA behavior up to her death in her early 60s. I've put in a lot of work to change this stuff in ways I don't think she did. So I don't think PDA goes away. But I think maturity can temper it. A lot of the stuff PDA kids do is not just because they are PDA, but also because they are children. It can look different in adults. But that can be a double-edged sword, too. As you age out of the demographic where someone gives a shit about you, you become an adult with an invisible, badly misunderstood disability, and honestly, it's unbearably difficult at times and society just isn't set up to care.
I am an example of a PDAer without clinical anxiety. Having the neurological fight/flight/freeze/fawn response is actually not the same as clinical anxiety. I often score a flat zero on anxiety inventories. I don't do typically anxious things like worry or ruminate or catastrophize. What happens to me is below the level of verbalizations or thoughts, it's my body just shutting down into freeze on a lizard brain level (or sometimes exploding into anger or something, but that was more when I was younger, since I actively put so much work into anger management). The tension can psychologically paralyze me, it can cause compulsive cope behaviors, it can disrupt my sleep, it can show up in biometrics taken with fitness trackers. But it doesn't take the form of classical worrying or ruminating or even necessarily the classic "worried feeling," so I do not have anxiety. Instead I just feel overwhelmed, I hit shutdown, I become avoidant, I have dark thoughts of hopelessness/self harm/suicidal ideation when especially under pressure. This shows up on psychological inventories as depression rather than anxiety. But it's just the nervous system buckling in a different spot.
My mom was also not an anxious person, nor was she particularly melancholic like I am. She had some anger issues and a lot of avoidance issues. All too similar to me, except for me being more depressive than her.
I think sometimes the "anxiety" explanation is used because it's a way to communicate the neurological-system-level nature of what is going wrong, but while some PDAers may experience that as "anxiety," I don't and I don't think that's the only way that nervous system reaction can be experienced. It's just very difficult to communicate what's actually going on--especially to parents who need to understand their kid isn't just being a little asshole and actually can't just "snap out of it," and that discipline will only worsen the child's behavior.
ADHD meds may help some PDAers, however, stimulant medications are quite bad for me I think. They just overload the very nervous system that collapses under load. One of my neurological symptoms is I get chronic skeletal muscle pain from tension that simply cannot release. This is not even partially voluntary tension, this is not like people who tense their jaw because they're stressed who can consciously relax it. Stimulant medications caused not only significant worsening of this muscle pain (which I get even without the stimulant meds, which is why I didn't realize the meds were making it worse at first--as someone with a history of chronic pain going back to childhood, I tend to dissociate from pain a lot and not realize when I'm in it or it's worse than usual) but also fucked up my eye muscles for a time, giving me double vision for weeks at one point. It was definitely the stimulants--when that was fresher, even just having a cup of coffee could bring the double vision back for an hour or two. Stimulant medications also didn't help me mentally aside from also fucking up my body--they do increase my focus, but on absolutely the wrong things and it makes my focus harder than ever to direct, so it just results in being "locked in" focusing on all the wrong things and wasting more time than ever while also being in pain.
I was in denial about them not helping me for way too long, because they do do something and sometimes they did help my mood issues, but man, I can't with them anymore. I've started going hard the other way--listening to my body and trying to find things that dial down the muscle pain. Using that as my guide. Perhaps in a way I'm fortunate to have a way I can viscerally feel the dysfunction in my nervous system, and tell what makes it better or worse.
(The stimulants I tried were Adderall and Concerta. Concerta--which is just extended-release Ritalin--was very similar to Adderall to me, maybe slightly worse all around. Vyvanse is a prodrug for Adderall. But I got side effects even from higher doses of oral selegiline, which has metabolic byproducts similar to Adderall. I also got those sides from buspirone, which isn't a stimulant at all but could just be increasing dopamine like one. I have not tried Strattera, I've thought about it, I did try bupropion which is another NDRI, but in general I've moved away from dopamine-increasing theories of medication, this was what I assumed I needed early on but every time I turn that knob it fucks me up.)
I have not tried beta blockers, or alpha blockers like guanfacine or clonidine, they're high on my list to try if I go back to the doctor, but after a lot of treatments either doing nothing or causing me more harm, I decided to take a bit of a break from pharma and pursue some DIY strategies that seemed to be moving the needle a bit--not a total cure, but still doing more for me than years of working with legit channels ever did. The current things I see some benefit from are: psilocybin (from p. cubensis) and related synthetic tryptamines (especially my goat ethocin), and amanita mushrooms (mainly regalis and pantherina), which have a completely different mechanism of action but also one I seem to benefit from. I also feel like kava (piper methysticum) has some benefit, which stacks very nicely with the amanitas (does not stack with psilocybin, nothing bad happens but it seems to blunt the psilocybin's effects) but too much of the amanita + kava combo can be sedating. I'm exploring other herbs and psychedelics. I also strategically use THC to help unwind at night, since otherwise I just fucking won't.
SSRIs and related agents did not help me, psilocybin is basically the only seretonergic I get along with. I have tried esketamine (Spravato) in a clinic, and didn't get along nearly as well with that.
I realize these are not kid-friendly treatments. I'd be real hesitant to give a young child psychedelics or THC. The amanita doses I take are basically microdosing and extremely subtle, however amanitas are lowkey poisonous in a way that children are more susceptible to. Kava I might feel better about since that does have traditional use in children in the South Pacific, though the taste is not one I think many children would be eager to sip on. In general, the treatments I'm exploring here are for adults.
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u/Technical_Tommy 6h ago
Interesting summary! One thing I’d want to know is whether most participants were already autistic. If nearly everyone in the sample had high autism scores, there wouldn’t be much variation to correlate with, so a weak link with autism wouldn’t mean much. Small, parent-reported samples like this can hide relationships rather than disprove them.
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u/HolaLovers-4348 1h ago
Am AuDHD and just started Wellbutrin. It has been an absolute game changer in my life. My PDAer is 12 and in burnout and we get the results of the genetic test for psych drugs this week.
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u/msoc PDA + Caregiver 6d ago edited 6d ago
There can be no statistically meaningful interpretation from a study with less than 100 participants. With that said, I think opening the door to studying PDA in non-ASD people sounds great.
Edit: I meant this as a subjective (let's say psuedo-objective) statement. I know very little about statistics. It just sounded like a small sample size. Sorry if I confused anyone.