Has anyone's child been diagnosed with PDA (Pathological Demand Avoidance)?

[Oh2beatsea]

We recently saw a Paediatrician who didn't feel my 9 year old daughter had autism as she has friends and can make eye contact!
When I asked about PDA the dr said they don't diagnose it as it would come under the autistic umbrella but I could ask our GP to refer her to a private clinic specialising in PDA (costing £3000) which would need CCG funding. This didn't make sense as she didn't think my daughter had autism. Has anyone managed to get PDA diagnosed via the NHS?

Unfortunately as PDA is not yet in the medical books. But it is accepted by the autistic society and recognised by many medical professionals. Same as sensory processing disorder. My daughter struggles massively with this, and again, the same psych I mentioned below told me she only does it because I allow her to! Not sure how a child just decides to have SPD one day..especially as she has had it for 8 yrs!!

Yes.

My son got an official dx of autism at 3, although, partly I believe because he was SO unco-operative and also delayed (with speech, walking). Autism and what I read didn't seem like a good 'fit'. I did acknowledge that he was not 100% NT but even before he had speech he was so communicative. A nod of his head, a point, a growl, a laugh, he successfully communicated everything he needed to and I never had the feeling that he didn't feel very connected to me.

I was reading article after article on line about autism and none sounded like him. The usual advice depressed me, reward charts etc. {sigh} It took me a long time to have the confidence to tell the multi disciplinary team that 'no, the problem is not my lack of consistency, the problem is this method is not RIGHT for him!''. I have given some of the people who've attempted to 'treat' him a book about PDAs. In some ways I feel lucky because he is not stereotypically autistic but in other ways it's hard because there is no help. I'm the expert. Nobody can help me because they know fuck all about PDA and I end up explaining it to them.

I still can't make him to co-operate/join in, for example, he never, ever does anything purely because the other kids are doing it, but if he chooses to join in, he participates with confidence, eye contact, creativity, imagination, empathy.................... So some 'friends' of mine decided he had Bold Brat Syndrome. I was told ''give him two weeks in my house and I'll sort him out!''.

Anyway, no official diagnosis of PDAS no, but I am certain that's what he has. I was venting on an parenting website years ago and a woman, a behaviour management therapist (?) told me to research PDAS to see if it was a good fit and it was. Bingo. Lightbulb moment.

I've had to explain what PDAS is to some people he's seen along the way now. We're getting ready for secondary school here and I know it won't be easy settling him in to a new secondary school.

To those with younger children with PDAS I would say that it gets a bit easier. NOw my son is 11 I can say things like well it's your choice and I don't mind but you can either go to this class or you can stay at home with the internet turned off, but I really don't mind, it's UP to you! Your choice. Then don't discuss it at all. YOu have to brazen it out and FAKE not giving a monkey's which choice he makes.

happyatthehome123
HOw did the transition to secondary school go!?

My son has coped well with primary (on the whole, few incidents of course) but because PDAS is anxiety based, I'm wondering if i should think about a course of anti-anxiety medication for the run up to secondary school. It's not this september thankfully.

He does have a close friend and other people he pals with but the one close friend is a bit of a crutch. He will go places if and ONLY if this one other boy is going! So he seems braver than he is. The boy he's close to, as is to be expected, his parents have different criteria from a secondary school and I'm certain they won't choose the school that has the best reputation for helping children with mild sn for their son. They might go the sporty all boys route which I'd never consider, or the private route. So my son will almost certainly be going to secondary school which would be bad enough but I don't think he'll have the 'crutch' of any of the children he knows going.

Just wanted to say this thread is so valuable and could really help many parents. I've read so many books on pda and still feel like I know nothing!

2 of my others have classic autism and switching from the direct " you need to do this" approach to the PDA " velvet glove" approach makes my head spin at times

oh boy, that must be a nightmare imnotacelebget

I have one 'nt' child but I feel bad for her. Her whole life the dynamic has been let's tip toe around dc2 so that that little bomb doesn't go off.

My PDAer is nearly 16 and I have a NT 13 year old -who has now reached the 'why should I do anything when you don't make her do anything?' stage

I completely get where she's coming from

Oh yes - my 12yr old although ASD often uses the " well you don't make her" phrase. I feel sad that it probably seems like we favour her when we don't - but he isn't quite able to understand yet

Sensory Processing Disorder was the first diagnosis she revived.
She hasn't been to school in seven years. After she was suspended at the age of 4 we attempted one more term. it was a disaster. I removed her and her sister as a temporary mesure but over 7 years on we are still learning at home. My PDA girlie has developed a keen interest in machine sewing and other creative pursuits.
I feel I was protecting her from ignorance around the condition. She has a neurological condition I didn't want to add to it mental health conditions also.

My DD(15) makes eye contact, has friends and an ASD (not PDA) diagnosis.

I recommend that you read what Tony Atwood has written about women/girls on the spectrum. We found it very helpful in negotiating our way to a diagnosis and then putting supports in place to help our DD and the rest of the family cope. She was diagnosed at 9 and while it's not perfect, she is coping so much better now, so there is hope.

I also have a 13 year old NT who had been amazing at helping with her sister but almost out of the blue became very frustrated/fed up with our situation. "Why can't we just go for a meal without XYZ?"
I think we're coming through that now.
The reality is though the whole family are hugely affected.
People are awful with there comments. Particually when my child was younger. Comments like you need to break her!
My granddaughter would never behave like that.
That child needs a bloody good smack.. I could be here all day

im not antischool and I hope very much your sons transition to secondary school goes well. All we can do is our very best. And work closely with the school. My daughter says she might go. So watch this space . If I'm honest though I think it would be disartourous. If her anxiety levels get high. As they did recently on an attempted holiday to Cornwall her behaviour can be explosive. I'd rather wait while she matures. We just keep working on emotional intelligence. The HE community have been very supportive of us.

I know what you mean, my dd says oh why can't he be normal?? and I think even normal autism is less like a series of landmines. I know other children with autism and they settle in to their routine, they might never go on to university but they are cared for within a system that understands them. They are square pegs and their are square holes.

My son on the other hand is so clever and capable of being so 'normal' when he's not anxious that I can't just shrug without pushing water up hill. And there's no point battling. It's all velvet glove. It's all below the surface of the lake, paddling like a swan, just trying to keep him at school for as long as possible. Already I feel positive that he has the tools on board to decide to do further education. If he dropped out tomorrow, he has a curious scientific mind, he's good at maths and his spelling is excellent, he is given extra spellings! The other day he told my Dad that there is a p in rasberry. lol. My dad was like, really, omg I@ve been writing rasberry for 74 years! Burned by an 11 year old. So I try not to go crazy investing in to him staying at school. He knows that if he chooses to sit at home all day, I won't fight him at all but I will not provide internet connection either.

Gosh wish I could edit all my typos. 😊

Happy, any thoughts on a course of anti-anxiety medication? Taken for the first year? I'm not in the UK and it's just so frowned on to medicate here. Nobody talks about it if they're doing it.
I may ring the PDA organisatio and ask them.

I didn't notice the typos!

I think it's so true what you say about the emotional intelligence. I think five years ago, any tiny thing that my son did not want to do that was it, immediate shut down. He lived in the moment only. If he didn't want to do it now there was no future to him. Obviously part of growing up is that you understand that lack of participation has a consequence. Lack of co-operation makes things worse. Postponing things doesn't make them go away. He still panics and withdraws and avoids a good bit but now when he is quiet and withdrawn and non-communicative, I can tell that there is a dialogue going on in his head. He is trying to counsel himself either in to being brave enough or assessing the repercussions of not co-operating/participating. So that has come with age. That acknowledgement that what happens today counts tomorrow and the week after next. Obviously a five year old just says no and no is no. I'm finding things easier now he's 11, even though the issues at stake are more important.

It sounds like he is doing well 👍🏼.. i Fred to think what school place we'd be on now. She's like a computer crashing when it goes wrong. No logic exists only the desire to gain control. When she's happy though she is the most charming, lovely helpful girl you could meet.

Personally I would always avoid medication. But obviously although our children may share a diagnosis. You've met one child with autism you've met one child with autism. Horses and courses. As a family who has often been judged I aim to always support and never judge. So for me if my daughter felt medication would benifit her I would support her choices. But if I had to consider drugging her for an environment it would be the environment I questioned.
I have no experience in this subject so maybe shouldn't have opinion at all. Just do what's right for you and yours ❤️

I do understand that but the secondary school could be the best to meet his needs in existence, everybody could be bending over backwards to accommodate him, but it'd still be NEW!

Obviously I'm not going to do it without looking in to it thoroughly and I've yet to meet anybody who has given their child medication. I have a friend in America and her son is on something for ADD. She hasn't had a moment's hesitancy over it. But America is different, they tend to race in with a tablet I think. I might end up there, but it won't be a race!

I can understand wanting to avoid drugs, but sometimes you have to do what is better for the child. You can't always change the environment for the child, you can only shrink their world down so much.

I hate giving dd melatonin for sleep. But without it she won't sleep. It is far better for her that she sleeps than not.

I tried everything, but after 6 of her 8yrs struggling to get her to sleep at a decent time, I couldn't make any new adjustments to her bedtime/routine.

exactly, you can't always change their environment, and you want them to help themselves by sleeping, or getting an education, or going to the dentist...!