Autism with PDA (Pathological Demand Avoidance) or EDA (extreme Demand Avoidance)

[Tap]

Is anyone familiar with PDA/EDA. This profile really fits dd15. She currently has an Autism Diagnosis, and I am going to talk to her psychiatrist about PDA. 

Adding the diagnosis, won't really change much, but it gives me some different ways of thinking about her struggles. I know she has a lot of anxiety. We are always working through that, but I never thought of it as an avoidance disorder. It is funny, that after years of therapy (500+ sessions) that I still stumble upon new tidbits of information helpful for issues she has had for her entire life. I always felt that her anxiety was because she felt overwhelmed by processing too much information or was uncomfortable for some reason. I  never made the connection to her just wanting to avoid demands on her. I was reading a meme that was talking about getting notices in the mail from not paying a bill. She had the money; just didn't pay the bill. Solely because,  paying the bill was placing a demand upon her. 

Thinking about dd15, and this really helps to explain more of her behaviors and why sometimes what she will and won't do, seems so erratic.

Anyone have this issue themselves or with someone they love. Any strategies that seem to help? 

[prairiewindmomma]

@gardenmom5

[Terabith]

This does seem like it fits, but just so you're prepared, PDA isn't a currently accepted diagnosis in the US.  I think it's only "on the books" in the UK.  

[gardenmom5]

Yeah - PDA is not recognized in the US.   Boy does it explain a lot.

Probably what is going on with Dudeling.

he has been so blasted resistant to *everything* I have ever done to try and help him.  Professionals have thrown up their hands in frustration.  One psychologist who did eval's on him, specifically refused to even take him as a patient because of his particular issues.  (she told me this in so many words)

I've had professionals who were making progress with him, and he was starting to relax, - then he'd refuse to even get in the car to go see them.  My suspicion was making progress/lowered-defenses = scary/felt-bad so he'd freak.

There are things I'd like to try, but he refuses.  just a few. . . 

1. - vagus nerve stimulation.  fyi.  The vagus nerve is the longest nerve in the body, and goes through every single organ.  re: His ND sold us the stimulator  from vagus.net.   It has been demonstrated in the past that in  ASD an over active vagus nerve leads to the fight/flight response.  So, resetting/stimulating/calming the vagus nerve can calm that too.  (If you do this - You MUST use it on your left ear.  the nerve along your right ear goes past your heart.)  Dh has a small tragus - so we used a stretchy knit headband to keep it in place while using.  (nothing metal.)

there are various exercises that can be done to stimulate/reset the vagus nerve, you'd have to look them up.

2. yoga (will calm the vagus nerve).    Most exercise stimulates the sympathetic nervous system (stimulating).  Yoga stimulates the parasympathetic nervous system. (calming.)

3. cranial sacral therapy.  1dd did this, and her progress was amazing.  She was diagnosed with ASD as an adult, no clue what was going on.  Huge benefit from this.  

 

I've tried swimming, horse-back riding, martial arts, etc. etc. as well as therapists.  he refused to even get in the car.

[Rosie_0801]

Ha ha, no, nothing I've tried does any good. It's like the demands of being alive in the first place cause sensory overload so there's no room to be willing to do anything that might help.

[Mrs Tiggywinkle]

I’m absolutely positive it is what DS11 has but no one here will diagnose PDA.  He has diagnosed autism.  
He was on Abilify for several years; initially we saw some benefit but as he grew older and matured he seems to have learned how to handle his mood swings better. He is on Prozac for anxiety now and it’s been night and day.  He’s a really enjoyable child now and has gotten 6th grade student of the month three times this school year alone.  We deal with a lot of the avoidance behaviors but I feel like we’re doing a thousand times better than I ever expected. Maturity plus a therapeutic school plus meds seems to have really helped. The school, honestly, has been fantastic for him. 
 

I recognize a lot of myself in the ASD/PDA literature. I’m still like that.  They’ll institute a new policy at work, something that makes total sense, something that I’ve even done on my own for years, and my first response is that I’m just going to stop doing it because it’s a policy and I’m being told to, so I’m not going to do it anymore. It drives my husband nuts and is really difficult to deal with myself, honestly. But it is what it is.

Edited February 12, 2022 by Mrs Tiggywinkle

[bookbard]

What I worry about with diagnoses such as this - and oppositional defiance disorder - is that it stops some professionals there. "Why won't he do X"  -"because he's oppositional" - "how do you know he's oppositional?" - "because he won't do X".

I think PDA is about a person using one method (avoidance) to cope with anxiety/stress. There are lots of methods, from meltdowns to ritualistic behaviours, for coping with overload. And there will be different levels of demand that each person can endure - getting dressed in the morning? having a conversation? eating something new? It'll be unique, some will have a lot more than others. But reduce the chaos of "what do I have to do" (eg visual supports for getting dressed) can reduce the stress and sense of demand. 

NB I work with younger kids. My repertoire of strategies for older kids is limited. Which is tricky as my oldest child is a bit like this. 

[gardenmom5]

1 hour ago, bookbard said:

What I worry about with diagnoses such as this - and oppositional defiance disorder - is that it stops some professionals there. "Why won't he do X"  -"because he's oppositional" - "how do you know he's oppositional?" - "because he won't do X".

I think PDA is about a person using one method (avoidance) to cope with anxiety/stress.  ...And there will be different levels of demand that each person can endure -

The one pysch who refused to treat him, had already decided. And what she claimed were not behaviors he engaged in.  Either way - I wouldn't want her to treat him.

 

And for dudeling - life is more than he can deal with.  Starting as an infant.  The ONLY way to start to calm him, was a completely silent dark room.  That was it.  I ended up firing my ped of 25 years, after he had a fit (the ped, not dudeling) that two year old dudeling wouldn't stand on the scale to be weighed.  (It moved, and that scared him.)   Eventually it was a game - but in those days, it was genuine fear.

[wendyroo]

Elliot psychiatrist has said that he would diagnose PDA in a heartbeat if it was recognized here.

It wouldn't change anything. Elliot has diagnoses of ASD, ODD, DMDD, ADHD, and generalized anxiety. None of the diagnoses on their own explain all of his behaviors, and neither would PDA. It would just encapsulate a slightly different subset of the behaviors.

[chiguirre]

Hugs to everyone trying to help their kids cope with this!

 

I just wanted to stop in and reinforce your views that this is a separate issue from ASD. My sons don't deal with PDA/EDA. They're generally eager to comply with demands if they're capable of doing the task. They like to feel like they're helping someone out. They do start to become stressed if they don't understand the instructions or don't know how to do the task. Then their anxiety can kick in and they'll shut down and refuse to try.  

[KSera]

3 hours ago, bookbard said:

 

I think PDA is about a person using one method (avoidance) to cope with anxiety/stress. There are lots of methods, from meltdowns to ritualistic behaviours, for coping with overload. And there will be different levels of demand that each person can endure - getting dressed in the morning? having a conversation? eating something new? It'll be unique, some will have a lot more than others. But reduce the chaos of "what do I have to do" (eg visual supports for getting dressed) can reduce the stress and sense of demand. 

 

I agree with this. I have one that always sounded like this would fit, except, they weren’t on the spectrum. Fast forward to adulthood, and they now have a spectrum diagnosis. It made school exceedingly difficult, even though it was homeschool and totally tailored to this kid’s needs. There were occasions where they physically became rooted in the spot because I wanted them to do something (like walk forward in a busy place), and they refused, and then me putting a hand on their shoulder to guide them as I would do for any of my other kids was the trigger that pushed them over into completely digging in and being unable to move. I can see in hindsight that that was a thing that happened in visually stimulating or noisy environments. Think grocery store or county fair. But at the time, it was mystifying why this behavior. I’m talking all the way up into the teens, not with a toddler. Medicating the anxiety and providing good therapy has helped a lot, but the overall instinct to become very stressed about any demand is still very much there. I don’t ask this kid to do any more than I need to. They will eventually wash their laundry or bring their dirty dishes out of their room, but asking/telling them to do so is the shortest way to ensure it’s not going to happen. It’s definitely frustrating.

[wendyroo]

1 hour ago, chiguirre said:

I just wanted to stop in and reinforce your views that this is a separate issue from ASD. My sons don't deal with PDA/EDA. They're generally eager to comply with demands if they're capable of doing the task. They like to feel like they're helping someone out. They do start to become stressed if they don't understand the instructions or don't know how to do the task. Then their anxiety can kick in and they'll shut down and refuse to try.  

Yeah, with Elliot, ASD is his least influential diagnosis. Everyone knew something was very wrong behaviorally from the time he was 2, and we had dozens of professionals wonder if he had ASD and give him screening tests, but ultimately every one concluded that he just did not fit that diagnosis...or, at least, not well, and in some ways he was the polar opposite of typical ASD behavior.

He finally did get an ASD diagnosis, but only by the skin of his teeth, and only at the age of almost 9 after we had had to call the police on him twice and he had spent two stints in inpatient care. Even then, the evaluating psychologist told me outright that the results were so borderline that he could legitimately swing them either way. I requested that he give the diagnosis so that we could access ABA services.

So Elliot is clearly a case where the vast majority of his PDA/ODD/DMDD behaviors cannot be explained by his mild, borderline, almost-undiagnosable ASD. This is probably also the reason that ultimately we dropped ABA therapy...it is really hard to make progress with someone who is innately, adamantly avoiding and opposing all adaptive behaviors.

[gardenmom5]

1 hour ago, chiguirre said:

Hugs to everyone trying to help their kids cope with this!

 

I just wanted to stop in and reinforce your views that this is a separate issue from ASD. My sons don't deal with PDA/EDA. They're generally eager to comply with demands if they're capable of doing the task. They like to feel like they're helping someone out. They do start to become stressed if they don't understand the instructions or don't know how to do the task. Then their anxiety can kick in and they'll shut down and refuse to try.  

It is a subtype, it is not separate.

Most people/children with ASD do not deal with PDA.   Most people with ASD have some degree of anxiety.  PDA isn't just anxiety. Every person wtih PDA also has ASD.  It's one of the diagnostic criteria.   I'm on a PDA support group.

Edited February 13, 2022 by gardenmom5

[purpleowl]

Is PDA something that is always present, like autism itself? Or is it something that can suddenly show up?

We have been seeing a number of things from DS that make me think this is possibly a fit for him as well, but it is recent.

Although, now that I think about it...he has always tried to do things just a little differently from what we ask. Like if we're playing together and I tell him, "Say, 'I love Mommy!'" then he will instead say, "Mommy is someone I love!" If I tell him to put his cup on the counter next to the sink, he'll put it on the counter next to the microwave instead. Just little things like that have always been part of how he acts.

But recently we are seeing outright refusals for things (and for things that matter more).

Those of you with experience, does this description fit with PDA?

[gardenmom5]

51 minutes ago, purpleowl said:

Is PDA something that is always present, like autism itself? Or is it something that can suddenly show up?

We have been seeing a number of things from DS that make me think this is possibly a fit for him as well, but it is recent.

Although, now that I think about it...he has always tried to do things just a little differently from what we ask. Like if we're playing together and I tell him, "Say, 'I love Mommy!'" then he will instead say, "Mommy is someone I love!" If I tell him to put his cup on the counter next to the sink, he'll put it on the counter next to the microwave instead. Just little things like that have always been part of how he acts.

But recently we are seeing outright refusals for things (and for things that matter more).

Those of you with experience, does this description fit with PDA?

One thing I've learned, from dudeling and 1dd (both ASD). . . . . hormones of puberty can escalate symptoms and introduce new ones.  Duelings's Ped-nuero confirmed ASD/ADD kids will get A LOT worse when they hit puberty.  Things you didn't notice before (or didn't think were a big deal) - can suddenly become overwhelming and are a complete game changer.

 

[purpleowl]

3 minutes ago, gardenmom5 said:

One thing I've learned, from dudeling and 1dd (both ASD). . . . . hormones of puberty can escalate symptoms and introduce new ones.  Duelings's Ped-nuero confirmed ASD/ADD kids will get A LOT worse when they hit puberty.  Things you didn't notice before (or didn't think were a big deal) - can suddenly become overwhelming and are a complete game changer.

 

DS is 7 and showing no signs of puberty.

[KSera]

1 hour ago, purpleowl said:

Is PDA something that is always present, like autism itself? Or is it something that can suddenly show up?

We have been seeing a number of things from DS that make me think this is possibly a fit for him as well, but it is recent.

Although, now that I think about it...he has always tried to do things just a little differently from what we ask. Like if we're playing together and I tell him, "Say, 'I love Mommy!'" then he will instead say, "Mommy is someone I love!" If I tell him to put his cup on the counter next to the sink, he'll put it on the counter next to the microwave instead. Just little things like that have always been part of how he acts.

But recently we are seeing outright refusals for things (and for things that matter more).

Those of you with experience, does this description fit with PDA?

My kid like this (but with no official diagnosis of this as we are in US) didn’t show anything noticeable like this until school age. Six or seven. I always chalked it up to starting around the time demands on her increased (without having known anything about PDA until many years later). I think early childhood was easy and free enough that it didn’t trigger this yet.