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Anyone with a PDA diagnosis, please talk to me about it!

(49 Posts)
popgoestheweezel Mon 28-Jan-13 17:24:46

I need advice and your experiences of getting PDA diagnosed please.
We are sure that ds (6) has PDA, two years ago we were referred by our GP for investigation. We have seen the community paed three times now and they have referred us to SALT, OT and ed psych which were turned down because school has to do interventions first. He has had blood tests and they all came back OK (some borderline but apparently fine). They've also given us a GARS form to fill in.
At home, we give him a variety of supplements which have really helped, we're very careful with his diet and he does OT-type exercises twice a day for the last year which have helped too. But still he cannot cope with the ordinary demands of life.
At school, he has better times and bad times. He has attended a social communication group but that didn't make any difference. Initially we heard a lot about him growing out of it, then they told us he was sociable (i.e.. not typically autistic) so there was 'nothing they could do'.
Eventually, we wrote to the newly appointed head quoting from SENCOP about barriers to learning and failing to fulfill potential and he arranged for us to have a meeting with the ed psych. She gave us a CAST to fill out, in which he scored just into ASD territory.
On tuesday we had another meeting with ed psych, teacher and senco. The teacher said how worried she was about him and we said the same. The ed psych said that he had ASD traits but not enough. I have been politely mentioning the fact that we believe he has PDA throughout every meeting/appt we have but no one seems to take any notice!
Ed psych told us she plans to observe ds again this week so we have written saying that we are convinced it is PDA and that it will be hard for her to observe as children with PDA typically behave better in school then release the pent up stress at home.
So, what do we do next?

HotheadPaisan Mon 28-Jan-13 17:33:19

Any GP/paediatrician input?

popgoestheweezel Mon 28-Jan-13 18:51:36

Seen paed 3 times now and he is sympathetic but we aren't really getting anywhere. He has referred us to various services as I said but no joy.

HotheadPaisan Mon 28-Jan-13 19:37:41

Sorry, missed that, it's up to the paed to diagnose, would he refer you to ENC?

HotheadPaisan Mon 28-Jan-13 19:42:56

And have you got recs from the PDA Contact Forum?

bigTillyMint Mon 28-Jan-13 19:43:19

I am guessing that he has been seen at the Social Communications clinic which is where children in our borough get diagnosed/not for ASD and other social communications difficulties?

I 2nd ENC

Walter4 Mon 28-Jan-13 20:12:08

The ENC are the ideal , however, PDA is becoming more recognised now. I would ask on the PDA contact group, there are some professionals there who may be able to advise you of where to onion you're area. I might also give ENC a call , they are helpful and could point you in the right direction. Assessment privately there is around 2600 I think.
Best of luck, I'm sure you will get there in the end smile

AuntStressie Mon 28-Jan-13 20:23:53

What county/part of the country are you in?

We were assessed at the ENC via the NHS. The GP had to require the extra funding and it all went from there, so another way in so to speak.

acquire not require lol

HotheadPaisan Mon 28-Jan-13 20:43:27

I still rate Daphne Keen with her approach of diagnosing an ASC and then explaining how this is characterised (anxiety, demand avoidance, controlling and oppositional behaviour) in this relatively rare but well-recognised group of children. If people actually read her report it's a blueprint for DS1 and tells you all you need to know.

PDA is gaining ground but I would want it placed firmly in the ASD sphere until the tide turns sufficiently. Bit chicken and egg I know.

HotheadPaisan Mon 28-Jan-13 20:44:36

Gaining recognition I meant. His paed needs to diagnose or refer, it's not fair to leave it in the air.

We were going to see Daphne Keen, hmm wonder if it's still worth a visit, just to see if she 'gets' anything ENC missed. However ENC were spot on with a lot of things with DS, he is also down syndrome and severe learning disability. They are also going to help get him the right support, so may sit and ride a bit longer. I mean another few month on 12 year won't matter?

Walter4 Mon 28-Jan-13 21:04:39

They were spot on with my son too and have be great in providing follow up help and advise as needed.

Walter do they provide ongoing support/advise or do they discharge you? just we are going back for a 2nd visit to discuss moving forward.

Walter4 Mon 28-Jan-13 21:15:30

They have asked to see us again in a few months, they provide ongoing support though I don't know if everyone gets seen again or not. I have contacted them by phone and email and always got great help and advise. The school can also call them ( they don't though:/) it was just lovely to be with people who totally got it!

we were only there about 2 weeks ago and we go back next week, they have been in touch by email a few times inbetween hmm

endoftherainbow Mon 28-Jan-13 22:14:01

We've had a dx for ds3 via camhs. ASD with PDA traits. It's taken a while as ds3 hasn't 'ticked all boxes'. Ed psych's aren't there to dx but advise school on strategies etc. As ds3 was an increasing barrier to his own learning we requested statutory assessment, separate to school making their request. Initially it was for behaviour but the category and hours are changing since dx. A child doesn't need a dx to get a statement but school need to be able to evidence strategies tried to date inc iep's. I'm guessing he's on school action + so if this isn't working he needs a statement. Check out ipsea and ace web sites. Think I've read on other posts that a developmental paed is needed rather than community paed. We had referral to camhs via our GP.

popgoestheweezel Mon 28-Jan-13 22:47:57

We have thought about ENC, we are in Leicestershire so it's on the doorstep, but it is a lot of money.
I guess one of our probs is that he isn't on school action plus (unless he de facto is because the ed psych has seen him?) I don't think there are any IEPs either. The good/bad thing is that he is coping OK at school (although they know he's unhappy, he's not that disruptive) and other than in maths is ahead in academic terms so no alarm bells ringing there. Also, he really doesn't have any classic indicators of ASD- that was the point the ed psych made that it can't be ASD because he's very sociable. I agreed with her and pointed out that he does display all the diagnostic criteria for PDA but she just fudged that issue ,probably cos she hasn't got a clue what PDA is, despite me banging on about it to everyone 'in authority' for the last two years!

endoftherainbow Mon 28-Jan-13 23:06:55

We're still at early stages but my vague interpretation from camhs is that a child can be on the spectrum I.e. they tick a lot of the boxes but not all of them. So, just because he's sociable this shouldn't exclude him from possible dx. There are a few posts around on PDA worth reading. Keep going. It can feel as though you're the only one 'shouting' with no one listening.

popgoestheweezel Tue 29-Jan-13 10:29:22

I have had another chat with ds' teacher this morning after embarrassing myself by crying when ds punched me in the jaw (he has a mean right hook, it still hurts now) because he didn't want to go into school. He'd been kicking and hitting me all the way up the road from our house although luckily it's not far.
I told her we can't go on like this and she agrees. She has 25 yrs teaching experience and is head of KS1. She says that at the beginning of the year she was sure she would be able to work with him and help him acquire the skills he was lacking but now sees that the tried and tested techniques that have worked with every other child she's taught just do not work for him.
I told her that only PDA techniques will work and explained that I've already given the guidelines and info to his previous teachers in recep and in yr1 and gave copies to the senco and previous head. I have also given the info to the paed and asked for it to be put in our notes. But, as yet no action has resulted from anyone.
I said how frustrating it is to have the answer but no one listen to us, not even the ed psych. I will give her some info today and she said she would talk to the head. I think dh will go and see him tomorrow too.
Ed psych will observe him on thursday morning and dh and I have agreed that we will suspend PDA techniques that morning and just treat him like the average child ie. expect him to wash himself, dress himself, sit still to eat breakfast, put his own shoes on and carry his own bags to school. It's certainly not an unreasonable number of demands but we know it will lead to a meltdown.

HotheadPaisan Tue 29-Jan-13 11:00:37

pop, I'm so sorry it's so bad atm, I know how it can be and it's exhausting. DP and I were both in tears of frustration and sadness last weekend.

I would be asking for an emergency psych appt, that's likely to take forever unfortunately but as I'm sure you know you have to tackle this on several fronts and you have to say how bad it is to anyone who will listen.

popgoestheweezel Tue 29-Jan-13 19:00:26

Thanks for the sympathy- it does help to know there are people on here who understand what you're going through, not easy to talk to those in RL who try to understand but can't really imagine it.

Cornycremegg Tue 29-Jan-13 20:48:02

how long does the assessment at ENC take and how much does the child need to engage?

popgoestheweezel Tue 29-Jan-13 23:45:20

Assessment apparently is four hours and play based, I guess the degree to which the child engages is the sort of stuff that they're looking to assess.

hi, our assessment was supposed to be 5 hours and I'm sure it cost the NHS £3500. From what I picked up in our assessment they were looking at his anxiety levels, the level and need for control, how demanding he was and ways he used to avoid demands. They also picked up on a lot more than that and after 2 hours they had seen enough. HTH

Inaflap Wed 30-Jan-13 18:42:29

Hi

I think I have a kid with undiagnosed PDA at school. Can you point me in the right direction of strategies because nothing we are doing is working and unfortunately the home situation is not good.

popgoestheweezel Wed 30-Jan-13 23:27:33

The 'trouble' is with ds that he is inclined to be remarkably cooperative in novel situations and has learnt to pretty much stay under the radar at school. So, despite us seeing huge, glaring, classic PDA behaviours at home I worry that they wouldnt show up in an assessment. I know it's common for children with PDA to do this but it really messes with your head and sometimes dh and I think we must be imagining things. It does come out in other places but he is a highly skilled manipulator so lots of people don't realise- it took us until he was almost 5 to work out what was going on ourselves.
I guess the enc people are the total experts in their field though and will have dealt with children like ds before, I suppose they have ways of getting them to display behaviours.

popgoestheweezel Wed 30-Jan-13 23:29:03

Inaflap, I can post some links tomorrow but in the meantime google the PDA contact forum- there are education and handling guidelines on there. Are you a parent or a teacher?

bigTillyMint Thu 31-Jan-13 07:10:07

Pop, thanks for that link - I work with children with severe behavioural difficulties and think that one or two may fit that criteria. However, I have never seen a diagnosis of PDA for any child in 25+ years - does anybody get children diagnosed by an NHS paediatrician/social communications clinic or are they all private diagnoses?

Hi big, ours is via the NHS.

Apparently he is the only one in our borough hmm

pop it's unbelievable what they notice, I was amazed at what they saw, some of it, I didn't blush shock

HotheadPaisan Thu 31-Jan-13 10:40:26

DS1 has a diagnosis of ASC with very high levels of anxiety leading to oppositional/avoidant behaviour which is a good explanation of the root cause and reflection of the difficulties he has.

Some resources:

Info from NAS about PDA - http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

Understanding PDA - great strategies for helping children who struggle with high anxiety due to everyday demands which results in obsessive, controlling behaviour and angry outbursts - http://www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740/ref=sr_1_1?s=books&ie=UTF8&qid=1349034146&sr=1-1

Diagnostic criteria/background info - http://www.pdacontact.org.uk/noframes/criteria.shtml

What is PDA? - http://www.pdacontact.org.uk/noframes/whatispda.shtml

PDA comparisons - http://www.pdacontact.org.uk/noframes/pdacomparisons.shtml

PDA distinctions - http://adc.bmj.com/content/suppl/2003/07/02/88.7.595.DC1/887595supportingmaterial.pdf

PDA Education and handling - http://www.pdacontact.org.uk/noframes/guidelines.shtml

PDA parent group - excellent info and current advice, not as fast moving as the Mumsnet Special Needs forum but some very experienced parents on there - http://www.pdacontact.org.uk/

Motivation and Reinforcement by Schramm (2011 Edition) - very good on why some children are so controlling, explains it all really well - http://www.amazon.co.uk/Motivation-Reinforcement-Turning-Tables-Autism/dp/1447748360/ref=sr_1_1?s=books&ie=UTF8&qid=1349034063&sr=1-1

Huebner's book What to Do When You Worry Too Much is very good on anxiety and practical strategies for ages 6-12, there are others in the series on sleep, anger, OCD, negativity and bad habits - http://www.amazon.co.uk/What-When-You-Worry-Much/dp/1591473144/ref=sr_1_fkmr0_1?ie=UTF8&qid=1354348764&sr=8-1-fkmr0

HotheadPaisan Thu 31-Jan-13 10:41:07

Gah, wrong set of links, sorry:

Info from NAS about PDA - people tend to listen to NAS

Understanding PDA - great strategies for helping children who struggle with high anxiety due to everyday demands which results in obsessive, controlling behaviour and angry outbursts

What is PDA?

PDA diagnostic criteria/background info

PDA comparisons

PDA distinctions

PDA Education and handling

PDA parent group - excellent info and current advice, not as fast moving as the Mumsnet Special Needs forum but some very experienced parents on there

Motivation and Reinforcement by Schramm (2011 Edition) - very good on why some children are so controlling, explains it all really well

Huebner's book What to Do When You Worry Too Much is very good on anxiety and practical strategies for ages 6-12, there are others in the series on sleep, anger, OCD, negativity and bad habits

Evaluating the effects of medication on people with autism by Temple Grandin

bigTillyMint Thu 31-Jan-13 11:14:15

devientenigma, did you have to suggest and push for that or did the paed come up with it him/herself?

Wonder what borough you're in too!

It was a joint suggestion, with me, GP and cardiologist. DS doesn't just have PDA, has a whole host of medical, neurological and physical disabilities, from birth.

Health side is working with us. It's education and therapies who are our downfall. Have let him down for almost 12 year. In turn making it an ongoing battle. There has been a lot of back stabbing and buck passing. At the end of the day DS is much too difficult to work with and only a few have been honest enough to say it. As for the paed suggesting, we have had 3 arguing over who should take him on!

As for the borough, you will just have to guess lol grin

bigTillyMint Thu 31-Jan-13 13:11:22

Am going to suggest we go for a diagnosis with one of ours - I wonder if I'll get anywhere!

Inaflap Thu 31-Jan-13 15:03:48

Thank you. I'm both parent and teacher. Have googled and can see links with several students but don't know if I'm imagining it or not. One is a very passive girl who behaves like a jelly most of the time nd just does not complete work well yet socialises and is good with her friends. We put in place something for her which would make life easier for her but she just won't use it in case it marks her out as different. Her anxiety levels are high yet with friends, fine. She has one friend whom she relies on constantly and seems joined at the hip. She sulks if they are separated. However, we don't see any 'adverse behaviour' as such. I have another student who is manipulating by being 'forgetful' or too 'tired'. Again huge anxiet levels but when told off bursts into noisy sobbing. They are both secondary age. I have another with aspergers as a diagnosis but very very manipulative. Can lie for england and I know she is awful at home. Home support is not good. She is very very bright but doesn't come across as tradtionally aspie. The diagnosis is recent and I am surprised that PDA was not mentioned but again how much is down to a poisnous home situation I don't know. Thank you for the links. Good old mumsnet.

popgoestheweezel Fri 01-Feb-13 22:54:13

Good news- we have heard today that the ed psych is referring us to CAMHS and the autism reference group, which I think is a multi discp panel for trickier cases.

popgoestheweezel Fri 01-Feb-13 22:57:23

devient- interesting that you say they notice loads. I guess we've got so used to the average person saying "he's absolutely fine' when we're noticing loads of 'stuff' that we think we really are the only ones who can see what's actually going on.

notapizzaeater Sun 03-Feb-13 17:20:22

My ds is query PDA - dad and I convinced. We have a 25 hr statement and waiting or CAMHs diagnosis now (been waiting 14 months for assessment) but they warned us before putting us on the list that Calderdale do not recognise PDA ......... How's that work then ? I queried if someone had breast cancer but they didn't recognise that what would happen ....

Walter4 Sun 03-Feb-13 17:40:54

Hi corn, the assessment is about 6 hours. I wouldn't worry about the child engaging, they deal with PDA all the time, I thought mine would have a ball and look totally normal to them! I was wrong, they saw it all, even though he had such a good time he drove us crazy about going back the next day!

Cornycabernet Sun 03-Feb-13 18:53:52

thanks walter
actually getting him there in the first place would be the biggest challenge I think!

popgoestheweezel Wed 06-Feb-13 10:40:35

dh and I attended a PDA workshop last night and it's confirmed our opinion that ds is a definite case of PDA. In fact, it seemed that ds was one of the more severely affected children and one of the youngest of the group too. That has silenced the silly little voice at the back of my mind saying 'maybe you really are just rubbish parents... maybe you are just imagining it'. It actually made me realise how well we are coping with a very, very challenging set of circumstances.
So, I think we really, really need to get a diagnosis now. As well as being a very useful tool for getting him the right support, I think it will help dh and I to feel 'validated' in our approach.
The question is, do we stick to the NHS route (already been on this track for two years, will take longer and potentially may never get diagnosis because they won't recognise PDA) or go privately Daphne Keen (I think fees somewhere around £1000??) or to ENC, fees £2600, but is the place to get advice from the real experts... Any recommendations?

HotheadPaisan Wed 06-Feb-13 10:49:18

Honestly, no-one has heard of PDA and there is deep suspicion of it where I am. ASC/D with very high levels of anxiety leading to avoidant and/or oppositional behaviour is DS1's diagnosis and I am happy with that.

Whatever the diagnosis it is the support and strategies that will matter. I highly recommend DK just for the incredible insight she gave us into why he does what he does but stick with NHS too (we have both, HFA/AS from the NHS, but that's not a great fit).

ENC would be good too, any chance of your GP/Paed/PCT funding that?

I saw our paed again recently and she reiterated how severe this is and how she had only seen a handful of children like DS1 (DK said similar).

I totally, totally understand what you are going through, it is utterly exhausting and dispiriting at times, for him and us.

HotheadPaisan Wed 06-Feb-13 10:50:10

And what workshop, I am jealous! If it is gaining ground in your area that is good. I have been told CAHMS 'don't like it' here, pfft.

popgoestheweezel Wed 06-Feb-13 11:26:48

PDA Workshop was run by autism west midlands in birmingham so not really our area. It was a run of strange co-incidences because I only came across it by chance and fortunately we happened to be working in the area that day so totally convenient. When I checked the address it was bizarrely just yards from my grandparents' old house- weird!
School would be happy to refer us to ENC and head initially said they would fund out of their own budget. When I said that it was £2600, he looked rather taken aback and, understandably, said he'd have to think about that kind of money. The way dh and I are feeling though is that we might just pay for it ourselves. If it is the route to the help ds and we need then it will be worth every penny imo.
ATM it feels like the NHS is just going be more of these 'talking shop' style meetings where nothing is ever decided, we have already put up with two years of this sort of thing, I can't take anymore of it.
After the workshop last night, I feel even more strongly that ds is 'pure' PDA without anything else (other than a few sensory issues) going on, no real ASD of any kind. However, maybe we need ASD in the diagnosis in order to access resources?? Or does it muddy the waters? I think ENC might have the answers to those questions.

HotheadPaisan Wed 06-Feb-13 11:58:35

We struggle with that, I very much doubt DS1 would have the support he does if his difficulties were perceived as 'just' anxiety, I think we would be down a behavioural track.

I think it is an ASC/ASD, the social interaction and communication problems are significant, but I agree he doesn't fit other aspects of the triad so well. But then the triad is very a blunt tool.

popgoestheweezel Wed 06-Feb-13 12:51:12

I also think 'demand avoidance' doesn't describe it particularly accurately. Although that is a massive part of it, the demand avoidance is actually a sympton of the 'anxiety-driven need to be in control'. That's why ds can't wait for anything, even birthdays or christmas because he is not in control of it, he feels anxious. Birthdays and christmas aren't a 'demand' but anticipation of them is a real problem for ds. He is already going on about his birthday, repeatedly asking how long it is then grunting and groaning at the answer, and it's not until the end of april! He can't control time biscuit- that's the sort of thing that makes him feel anxious and it's very difficult to help him with that.

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