Pathological Demand Avoidance

[mum2DEW]

Hi I'm really looking for advice about this. Our ds1 (age 6) has always had behavioral issues. Not so much that I was overly concerned, we just thought the terrible twos stated early and lasted a long time! Recently we took him to psychology and OT. He has been diagnosed with mild sensory defensiveness and I totally agree with this (I think I have the same). I have always thought that his behavior was anxiety driven and we have been using visuals in our house from he was 3. Preparation for things happening always helped and he found change challenging but despite outbursts on a regular occurrence we coped. It has always felt like a battle of wills between him and us. I never know if I should be giving in our holding my ground. Some days I would decide what had to be done and as long as it happened her could do it whatever way he wanted that was fine, e.g at weekend he can choose his own breakfast, eat it whenever, choose his clothes and take as long as he wants to put them on, obviously this doesn't work on days we have to go to school and work! on those days he fights against things but we get there eventually-it's just so hard.

Anyway he's having cognitive assessment at the moment and psychologist thought autism from our description of ds1 but as soon as he met him he said no (I've always said it's not autism). Now he's given us something to read on PDA to see what we think. Well I read the thing he gave us and have spent the last 24 hrs reading every regurgitated thing on the net about PDA! Some of it definitely fits him but reading the parents blogs he doesn't feel as bad as some of the things they write. I think he hass demand avoidance but pathological doesn't sit well with me cos sometimes you can say put your plate in the sink and he does it without thinking. Are there different levels to this? Also he was not delayed at talking-he had words at 7 months and at 1 yr had enough single words for a simple conversation with you. He is very sociable with adults and likes kids but has problems with them not playing what he wants. Control is a big part of his life and the OT said it was a strategy for his sensory defensiveness. I'm so confused and not helped as dh read the PDA stuff and just said it sounded like ds1.

Sorry this is so long just wanted to get as much info in as possible

[tumbletumble]

Hi mum2DEW

My friend's DS has PDA - I'm not sure he has a diagnosis yet, but that is what his consultant is suggesting. He is 7.

I'm afraid I can see a lot of similarities with your description - sensory issues, finding change challenging, anxiety, no language delay, control issues, wanting to play with other kids but not always knowing how to do so (eg she told me a story recently about him not letting a little girl leave a treehouse when she wanted to because it was against the 'rules' of the game - she got scared and her mum was furious, my friend was v embarrassed).

My friend's DS sounds worse I think - he can get very aggressive/violent when he doesn't want to do something. They are having a lot of trouble with him at school - he's bright but refuses to co-operate with the teacher. How is your DS at school?

I don't think your plate example proves he doesn't have PDA, my understanding is that the problems arise when you ask him to do something that he doesn't want to do so sometimes he will do as asked (if he doesn't mind doing that thing). There are definitely different levels of this. As with autism, it's a spectrum.

You could try posting on the Special Needs board for more replies. Good luck with your DS.

[mum2DEW]

Thanks tumbletumble. He's had a few outbursts at school and one took his teacher by surprise, she said she'd never experienced anything like it ever before but on the whole school are ok with his behaviour, they just want him to be able to sit still and listen and follow instructions etc. They say they don't think he's achieving his full potential with his written work but on verbal tasks he's very enthusiastic and they can expand the lesson.

So far he's not violent as such but you can see he's bottling it all up, the other night he had a meltdown cos he didn't want to wear the pyjamas I had left out for him (his favourite the night before!)Anyway he started punching the air, but this is nearly as violent as he has got. Normally outbursts involve crying, screaming, door banging, foot stamping etc.

I might try the special needs board, thanks for the tip.

[Kleinzeit]

mum2DEW yy to what you say about different degrees. My DS has an Asperger’s diagnosis, and I’d say that with a lot of his problems his abilities are blunted rather than totally non-existent? And as he’s getting older he uses his intellect to reason things through, where other kids can rely more on instinct.

These conditions have a lot of different aspects, I don’t think any kid ever has all of them. Some of them can even be opposites, the child-psych told us that Aspie kids were often either totally tidy or totally disorganised and messy! One extreme or the other.

I agree that the “pathological” in PDA sounds wrong but really it just means “a lot more than most kids”. Because most kids will avoid demands now and again, so it has to be more than that to count as PDA. Anxiety is a big factor in meltdowns for kids with ASCs. With my DS, very strict routines helped a lot, and we had a timetable on magnetic labels for the weekend. May be different for yours though! The diagnosis and investigations will help you and the school figure out what he finds stressful. It sounds as if you’re doing a lot of the right things already.

[sewingandcakes]

Hi Mum2DEW, I haven't got any useful experience of this to give advice on, but I wanted to say that this sounds very similar to my son. We're at the beginning of what will be a long process to get a diagnosis. I suspect he has As

[sewingandcakes]

Aspergers, but your post has really made me think about PDA, and whether that describes his behaviours more accurately.

I hope someone can advise you, and thank you for posting about your experiences.

[mum2DEW]

It's so good to chat these things out. I finally felt comfortable (after 48 hrs of constant internet trawling for info) to speak to our OT for her opinion on whether his control is PDA or sensory defensiveness related. I laughed when she said it was a question for the psychologist but she promised to consider my question. Since this has been suggested to us we have had a wonderful compliant little boy who has done most things asked (yes I regularly have to ask a few times and in varying ways) I know I may be using more strategies but we have had virtually no meltdowns. DH even took him for a haircut and the worst that happened was he got it off the seat twice and his hair want perfectly finished but DH just went with it and said it was ok he'd done enough. I was more delighted with DHs response if I'm honest, he really seems to have taken on board the guidelines.

My decision at present is to apply the PDA guidelines when they work for us and not worry about a diagnosis at the moment. Had a great chat with my lovely GP today about it all and am feeling much better. I may crumple tomorrow again but tonight (after half a tub of chocolate ice cream) I feel good!

[tumbletumble]

That sounds very positive - using the guidelines / strategies when they help you and seeing how things go. Good luck!

[Kleinzeit]

Sounds like a very good strategy for the time being! You may want to go for a diagnosis later on for the sake of the school, as it might help the school to get support if your DS needs it and also teachers change and a diagnosis can give the new teacher a heads-up on how to support him.

[mum2DEW]

Well just to update everyone. We saw psychologist yesterday. DS1 scored 132 full scale score on IQ test so quite high! after lots of discussion psychology says that PDA diagnosis is the best fit for ds1 but he will only go forward with it if we want to. Then he told us he has never diagnosed PDA before but has a colleague who has once. I asked if the psychiatrist in the asd/camhs team would know more. He said he didn't know but if we wanted to forward with diagnosis he would probably be referring us on there for a second opinion anyway.He said if we went for PDA diagnosis then as it falls under the umbrella of asd that is what would be in the report and it would be the way he would get resources at school. We said we didn't want the asd diagnosis as people will just see that and won't understand PDA and I don't believe it will help. The psychologist is going to talk to school and then talk to us again. I think he then said he would do further investigation about anxiety but I'm not too sure.Still a bit in the air but I feel more confident in my decision making ability. We're meeting school anyway next week and I plan to give them PDA guidelines and ask them why he is barely reaching the average in his class work given his ability (they have always suspected this) and I'm also going to see what they think he needs to help him reach his potential.Will keep you posted on our progress!

[tumbletumble]

Thanks for the update. It sounds like the psychologist was pretty helpful? At least he didn't dismiss you with 'it all seems fine' or similar.

I think you are right to push for the correct diagnosis.

Good luck with the next steps.