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Pathological avoidance disorder

13 replies

What2do2 · 05/10/2020 16:18

Just wondering if anyone has experiences of this with young children. My 6 year old has always had quite difficult behavior, never slept as a baby or toddler, constantly crying etc. We tested for allergies, tried different things to get him to sleep or help him with all the crying. He’d have tantrums which were more like meltdowns in that he couldn’t stop and was completely inconsolable etc. These were a huge worry as I really couldn’t distract him at all once he was in this state.
Anyway huge, huge relief once he turned 4 as he suddenly started sleeping really well and the tantrums hugely reduced etc.
He’s six now, wonderful , very loving and creative child , I’m frequently told he’s so well behaved in school, he gets stars every week as he’s so kind to others or he’s being so well behaved etc. As you can guess his behavior is not the same at home . He is definitely not badly behaved, he never hits or is purposely naughty, we just have huge issues with him refusing to do certain things. He has sensory issues with clothes , I totally accept this and work with him but he also refuses to dress himself , it’s hard to describe but everything is a battle with him . He won’t put on his own trousers , socks , shoes and it’s not normal obstinate behavior as he won’t do this , we could be there an hour and even if we are going somewhere he wants to go he won’t put them on himself. He does this happily and willingly everywhere else . I know children with asd can mask behavior though.
It’s also the same with something he wants , for example if he wants something in a shop he will go on and on and on and not give up even though I’m totally consistent and if I say no I mean no he’ll still push and push and push or if we are going somewhere and he wants to go somewhere else he will go on and on about the other place.
It’s just so, so wearing, I could list 7-8 incidents like this a day. We try our best to be patient but I’m ashamed to say I have become really angry out of sheer frustration at times and I know this is wrong. I feel like absolute crap about it all.
We have jobs and other children so having to deal with this constantly is wearing. I have mentioned it several times to the school but they don’t see a hint of it and say his behavior is exceptionally good, he’s very sociable and is the least likely to get rough etc. When I said of the incidents they seemed really surprised and sortof downplayed it by saying kids can be worse for the parents . Tbh I actually have a fair bit of experience with education and v surprised the don’t realize how children with asd or on the spectrum often mask. Like that would be one of the first things I’d think of . If anything they made me really doubt myself.
I keep thinking are we imagining things as he eats everything, has absolutely no issue with change , travels the best of any of my children , will sleep anywhere, now goes to loads of clubs happy out . It’s just these daily battles with clothes and how he can’t let things go. I had him booked into play therapy but it’s been cancelled with covid . I hope to have him in once they reopen. Does this sound familiar to anyone. I’m crying writing this but it prob sounds so minor but it really isn’t. I also feel we are failing him.

OP posts:
What2do2 · 05/10/2020 16:58

Hopeful bump

OP posts:
BogRollBOGOF · 05/10/2020 17:04

Sounds like there's a lot of overlap with my DS's behaviour. He has an ASD diagnosis and masks through school. He has a secure best friendship and gets on with other children... but... he manages better in places like school or scouting where there is a structure and boundaries. He finds loose arrangements like parties much harder.

We sought diagnosis through the GP.
School really don't see it... but it's a nice cosy small school. I suspect secondary will be very different.

What2do2 · 05/10/2020 17:34

Puberty and teenage years is also what I really , really worry about tbh as how does they behavior translate then.
It’s just such a difficult thing to describe as he’s fine in structured places but also in totally unstructured like parties , travellind , camping , friends over etc, he loves all of that kind of thing. It’s just this extreme obstinate type behavior where he will refuse point blank to do something. It often works out that he’ll one day start doing whatever it is at his own accord but then a new thing comes up. It’s also the not letting anything go which worries me.

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DownToTheSeaAgain · 05/10/2020 17:39

Have you any kind of ASD diagnosis? You will need to get that before you can pursue the PDA which is a sub section of and a lot of professionals don't believe in it.

Best place to start is the GP for a referral. FWIW my son (13) who displays very pronounced PDA tendencies at home is totally fine at school. He has a diagnosis of ASD. However if it is not a problem for school then they won't really care.

OopNorfDahnSarf · 05/10/2020 17:45

Try reading The Explosive Child. If it chimes with your experiences you might find it helpful. You could also search on here for previous threads on PDA.

Gilead · 05/10/2020 17:49

You do not have to have all symptoms listed for an ASC diagnosis. Also some areas will give a PDA dx without an ASC dx.
A couple of suggestions: Getting dressed: offer a one day on, one day off, eg. You one day, him another, lots of praise when he does it, even if clothing is inappropriate.
Asking for things in shops. Offer as a reward.
Competition can be useful, bet you can’t get your socks on before me, type of thing. Not with siblings though!

What2do2 · 05/10/2020 17:56

I spoke with a gp and a public health nurse (I’m not in the Uk) and they did some assessments and questionnaires , also observations at home and they said they saw no traits of asd and there wasn’t any obvious red flags. Also things very much calmed down between 4-5 but now is coming up again. I think I’ll need to go back again and pursue it.

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SewingBeeAddict · 05/10/2020 18:19

One of mine refused to get dressed around this age.
They went to school in PJs , clothes in a bag.
Calmly explained to teacher
Never did it again
Persistently asking for things
Warn prior, consequences if he wont stop asking.

SkepticalCat · 05/10/2020 19:21

Hi @What2do2 My child is diagnosed with ASD + demand avoidance. Lots of sensory issues, doesn't cope well with change, high anxiety, narrow (but very deep) interests etc. But traditional ASD methods don't work, eg daily timetables are a 'demand' when imposed by others, yet we have a very solid routine which is entirely set by my child. Novelty works - so going somewhere once can work really well, repeat visits maybe not so much. Very hard to explain.

Looking back at scenarios when they were a toddler (they are 10 now), I remember it was almost as if they had to "save face" when asked to do something; it always had to be on their own terms.

The demand avoidance pervades everything we do. Eg we could be watching videos together on YouTube and they will say "I'll watch that one next". If I say "good idea", then it becomes a demand for them to watch that particular one and they change their mind. We have to be incredibly careful with our language (verbal and body language) and be extremely nonchalant if they decide to do something that we've been wanting them to do for ages.

Demands can be intrinsic as well, so things that my child think they should be doing and they don't even have to be imposed by others.

As I think a previous poster has mentioned, the avoidance isnt just boring/difficult things that they'd rather not do and most people want to avoid, but things they love as well.

It can be incredibly debilitating; I can suggest going to the park, shops to buy a treat, cinema etc and more often than not the answer is no. I know I might be in with a chance if I get "maybe". And if the answer is "ok then" I need to be ready to move that instant before something triggers the demand avoidance and they change their mind.

A phrase used to describe PDA is "can't help won't" eg they cannot help not being able to do something, in fact they often want to do it, but can't.

What2do2 · 05/10/2020 20:01

Thank you @SkepticalCat , that’s a really, good explanation. And thanks for the other replies. I’m not sure if it is that now , it’s generally about things he doesn’t like and doesn’t want to go . If I give in he would stop but I can’t give in all the time and if I don’t he will go on and on for a very, very long time

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What2do2 · 05/10/2020 20:09

I’m going to start a log and book a gp appointment. It’s very hard as constantly doubt myself but I have other children and I know this behavior is more extreme.

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SkepticalCat · 05/10/2020 20:10

@What2do2 I would echo what @OopNorfDahnSarf says about reading The Explosive Child. It's not a book about PDA specifically, but more about how to create a dialogue with your child in order to get the outcome that works for you both.

There is also a website called Lives in the balance:

www.livesinthebalance.org/about-cps

TheTeenageYears · 06/10/2020 09:07

Look up Oppositional Defiant Disorder and see if the explanation for that is a better fit. I feel your pain if not in the U.K. - it's so difficult trying to look into these things but all I would say from personal experience is do it now while young. Don't ignore or leave till later. If there are issues for more than a 6 month period it's very likely to be something and not nothing and it's so much harder to deal with when they are older.

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