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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To ask what your child with PDA is like?

29 replies

HipHipHippoo · 30/03/2019 14:04

My 5 year old DD is the most insolent child I have ever met. She refuses at least 80% of requests, she hits, bites and pushes. She takes everything very literally; we'll be playing a game and I'll pretend to get her and she'll scream the place down and bite and hit me because she really believes I'm the bad guy I'm pretending to be. She is very clumsy and trips and falls or walks into things at least 6/7 times on every trip out.

Her speech is very very difficult to understand yet she tries taking to everyone and just keeps talking at them even when they're clearly not listening or understanding. She's under SALT but it isn't making a jot of difference. I'm having to home school her as we moved house and we're waiting for a school place (she's only just turned 5) so I can't get school input. But at home school groups she doesn't interact with the other children and just talks at the adults.

She is very impulsive and often hurts herself as a result. I think she could be showing a lot of signs of PDA but the GP dismissed it as being a normal 5 year old

OP posts:

Treaclepie19 · 30/03/2019 17:50

I'm afraid I can't offer any advice but I'm wondering the same about my son.

Brexshitfuuuuuuuck · 30/03/2019 17:52

What is PDA?

lunicorn · 30/03/2019 17:54

Yes it sounds like PDA or ASD.

lunicorn · 30/03/2019 17:54

Pathological Demand Avoidance

Whatsername7 · 30/03/2019 17:57

Ive taught children with PDA. It is a very tricky issue to navigate. No two children are the same. Often, it can be tied in the ASD issues. I would recommend getting an educational psychological involved asap.

SheldonandMama · 30/03/2019 18:05

She does seem to have some ASD features. You could raise with the SALT. If not I'd persist with GP referral to a Paediatrician or your local assessment pathway. The school could ask an Ed Psych but this could take time. Be persistent. It can take years to get a proper assessment. Good luck.

Original poster

HipHipHippoo · 30/03/2019 18:49

The GP said they absolutely won't refer without an educational professionals say so. Her speech therapist thinks she's shy and that's why she often refuses to play the games there. I don't know how I can cope with this for years. Earlier today we were talking about our upcoming holiday and she just kicked me in the shins really hard, for no apparent reason. Later we went swimming and she refused to stop pulling her sibling under water so we had to leave. The other DC are losing out because of her behaviour constantly and nothing I do or don't do seems to make the blindest bit of difference

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ChittyChittyBoomBoom · 30/03/2019 18:57

Can you see a different gp? My dd has autism, not pda (although can be very demand avoidant) and I didn’t require an educational professional’s say-so to get her referred to the community peadiatrican. In fact, as a teacher, I’ve only been asked for my professional opinion once the referral has been made.

There’s a brilliant blog calleed Steph’s Two Girls (she’s on FB too) written about a girl with pda.

Treaclepie19 · 30/03/2019 19:06

Our health visitor has referred us to a paediatrician for our concerns. Could you go down that route?

Isadora2007 · 30/03/2019 19:29

As so many others have said- it sounds like ASD which PDA can be tied to. In some areas you can’t actually get a singular diagnosis of pda without asd as it is only recognised as a comorbid condition.
Contact your local autism charity or support centre for further info for links specific to your area.

youaremyrain · 30/03/2019 19:39

Unfortunately, PDA isn't in the DSM-5 so it's very hard to get a diagnosis at the moment

snowdrop6 · 30/03/2019 19:46

You need to get her in to school..what is the hold up? Have you picked a school that's full? You need to phone every school in your area and go and visit.if they have a place fill in the lea forms and apply.once in school they can assess and apply for ehcp..they can get referral going for asd..don't wait for Lea to find you a place ,they will be in no rush.

snowdrop6 · 30/03/2019 19:49

I speek from experience,I have a child with asd and pad...when visiting schools try to say as little as possible about anything negative...we viewed 10 schools and once they knew the diagnosis they suddenly couldn't meet need ,when on the phone they seemed keen and had places....your local school should not be able to refuse you .

emmaluvseeyore · 30/03/2019 20:06

She sounds very like a pupil I teach that has PDA. I would definitely go to another GP and push for a school place if that’s what you need for an assessment. It might be worth you doing some research online on how to deal with PDA as you will want to try and reduce your demands as much as possible and give more choices so she feels like she is in control. This has worked wonders for my pupil.

Perihelion · 30/03/2019 20:07

Has she had her hearing tested?

MumUnderTheMoon · 30/03/2019 20:28

PDA and aspergers aren't identified separately from autism anymore. My dd is autistic but comes at the world from a very anxious demand avoiding place. You said you child refuses requests. So, don't request anything, tell her what she should do and if you can blame an outside source eg I have Phillips hue bulbs all over the house, before dd gets in the bath I tell her " when the light flashes it's time time to get out" she can't argue with a light bulb. If I need her to do something I tell her to do it eg instead of "can you put your shoes on?" I'll say "it's time to put your shoes on now".

Original poster

HipHipHippoo · 30/03/2019 21:44

MumUndertheMoon I have tried telling. In your shoe example, she would just say no it isn't. If I say it is, we need to get your sister from school (or whatever) she would say no we don't, and so on.

Snowdrop she has been to view a school with me and i think it was because of her speech/behaviour that they suddenly didn't have a place for her after all. I have another daughter that I also need to get to school so I can't just accept any old school, though most are full here anyway

She has had her hearing checked and it's fine.

OP posts:

Original poster

HipHipHippoo · 30/03/2019 22:09

Thanks ChittyChitty, that blog is great. I'm wondering if she meets the ODD criteria more than PDA now

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sharksonmyswimsuit · 30/03/2019 22:21

What is my PDA boy like? Funny, clever, a little sweetie and he says that the best thing about him is his smile.

We use a lot of indirect requesting in this house. For example a request to put his shoes on is phrased 'wellies, trainers or nothing' as opposed to 'put your shoes on now please' Therefore he has the choice so his anxiety is reduced.

There are some excellent PDA strategies out there is you Google them and also a Facebook group that's a wealth of knowledge.

As for assessment, a lot of places won't diagnose PDA as a straight diagnosis. Officially my boy's diagnosis is high functioning ASD with a demand avoidant profile. That was a private dx as ASD assessment services where I live take years.

School wise what is she officially classed as by the LA and what school term did she turn 5. Have you been in touch with the LA as there are various protocols they can use to get a school to accept a child even if the school is full.

RavenousBabyButterfly · 30/03/2019 22:33

Having dealt with undiagnosed children at school who I'm sure fit the PDA profile I'd say get her a diagnosis ASAP even if you have to pay. Undiagnosed PDA children have a very difficult time in school. Having a diagnosis, even if it's ASD and not PDA on the diagnosis, gives them some protection. Also, research, research, research so you have some strategies to use. It's a very difficult condition to deal with though I have no doubt she will give you plenty of joy along the way too.

Original poster

HipHipHippoo · 30/03/2019 22:42

I can't afford to go private The waiting lists here are so long though. My friend first spoke to the GP about her concerns about her son at 2.5 years old. He was finally referred to a paediatrician at 4 and has just had his ADOS at just turned 7 after a 16 month wait.

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imip · 30/03/2019 22:43

My dd, ASD, no diagnosis of PDA because it is not recognised in our area. Until the age of 8/9 she was just a ball of rage. At about 6/7, we started using PDA tactics which made a recognisable difference e.g. we could get her dressed and generally to school on time. We use PDA strategies all the time, it’s made her ASD more noticeable, but we find her still difficult to manage. Like many autistic girls, she masks and getting a diagnosis was very difficult - it took two years.

I’d advise mapping her behaviours to the triad if impairments and pursue and ASD diagnosis (you’d have ASD also with PDA. Take this to the GP.

I work in a school and, coupled with my personal experience, would find relying on an education professionals referral as crazy. What qualification does a teacher have in diagnosising ASD. I told my GP that I did not believe they were expert enough to diagnosis ASD, and this wanted a referral.

whatsnewchoochoo · 30/03/2019 22:44

Does anyone have any links for tips for managing PDA (for a friend)

lunicorn · 02/04/2019 10:34

Does anyone have a child who doesn't demonstrate any PDA behaviours at school, only at home!

Myusernameismud · 02/04/2019 10:43

lunicorn yep. DS doesn't currently have a diagnosis, we're still waiting but he's been referred and his teacher (who is senco), his primary mental health worker and GP all agree its very likely he'll be diagnosed as ASD with demand avoidant profile. His behaviour is very difficult to manage at home, but the only concerns school have are with his social communication and anxiety (hence mental health referral). He struggles with the demands of school, but it doesn't manifest as you might think, he just becomes withdrawn and non verbal. So while he does show signs at school, they're not the typical aggressive, defiant behaviours he shows at home.

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