CAMHS psychologist doesn't recognise PDA..now what?

[pia78]

I have posted before re sons challenging behaviour and suspicion of having PDA.
Have started CAMHS process but after visiting him at school (a good day according to teacher) and observing him for half an hour she had decided against further assessment. He behaved perfectly at the children's centre where she observed him, to the point where he was compliant and engaging in a way that I have never been able to get him to do in FOUR AND A HALF YEARS. am so frustrated as i know there is something not right with my boy and it is not a parenting issue ffs!!
How can I get this sorted properly? I have spoken to Elizabeth newson centre but I can't afford the £3000 to go private, also because husband in denial and won't support. It's been a milestone to get him to realise his behaviour is extreme- only taken me 2+ years to get him to agree to see a psychologist.
Can anybody recommend a PDA specialist in London who we could see?
Why is this disorder not recognised by the diagnostic manual?

[Marshmallow09er]

Sorry to hear it's been so frustrating for you.
The PDA society recently did an article to say increasingly clinicians are diagnosing 'ASD with a PDA profile' (this is what my DS has - he was diagnosed with ASD aged 4 and then his 'profile' has been added on subsequently).

www.pdasociety.org.uk/blog/2017/02/pda-profiles-nas-changes-and-new-article

I do know how terribly difficult it can be when the Jekyll and Hyde part comes into play - when my DS is calm and in adult company he is an absolute delight (and really this is the real him - it's the anxiety which brings out the challenging behaviour).

We had a fair few observations at school from professionals in the early days when he was having a good day and honestly I think they came away thinking that the school were making a fuss about nothing. Then it all spectacularly fell apart and it was clear to everyone who observed him!

I would keep documenting everything you can, ensure school are documenting everything thoroughly from their end too. Build up a big bank of evidence - if he goes any clubs etc get them to add in their evidence.

I can't say re private diagnosis as ours was done on the NHS - there is this company I have heard about (not London based, and by no means a recommendation, but I know the PDA society have had some links with them)
www.help4psychology.co.uk

Is the CAMHS pathway your only option? The only dealings we had with a psychiatrist there (mainly about anxiety) were not great and they really didn't get ASD / PDA. We are under a development paediatrician who has been brilliant for us (DS was first referred to her at 18 months and we still see her every six months now he's 8).

More than anything keep / start using Explosive Child techniques as these were life changing for us.

[BoogleMcGroogle]

There's an educational psychologist called Dr Hilary Dyer who does assessments and diagnoses. Perhaps worth getting in touch with her?

[Oblomov17]

Many LEA's don't recognise PDA.

Camhs directed us to NAS. She (NAS) wrote report to school, after observing him in school, re his PDA behaviour.

Her opinion was quashed and rejected.

It is really hard.

[oldbirdy]

Oblomov the issue is with the diagnostic manual that psychiatric diagnoses are made from. Pda isn't included and therefore can't be officially diagnosed. Plus the issue around how DSM 5 collapsed categories of autism into one spectrum condition and pda attempts to separate a category again. Pda was recently considered for ICD 11 ( the European diagnostic manual, DSM is the American one) and it was decided not to include it for the same reason - it's all part of autism.

It's not people just being obstructive and bloody minded. Most of us in the game recognise the presentation and personally I have been aware if it for about 12 or 13 years. However it is a UK only diagnosis and really it is covered by an autism diagnosis, albeit the anxiety is the absolute over rider and mustbe at the heart of any planning.

[oldbirdy]

Polter - there is a movement to use EDA (extreme rather than pathological) to Des ribs the presentation. Part of my issue is that many many autistic children who are taxed beyond their ability to cope in a particular situation will respond by becoming demand avoidant, but in my experience only a very few have that presentation chronically and enduring beyond all interventions.

[oldbirdy]

Yup, agreed

[Marshmallow09er]

I agree too Polter.
DS is autistic and fully embraces that - he's proud of his brain and we talk about it a fair bit.
He's unaware of the PDA part, and whilst I agree it's a horrible name (EDA does sound a bit better) it is a useful shorthand for those familiar with the presentation (or constellation, which again sounds nicer!)

[BoogleMcGroogle]

I understand the issues with diagnosis, but the problem is that the strategies normally recommended for a child with ASD in school are generally ineffective for a child presenting with PDAS. Lately I've worked woth a couple of children with an ASD diagnosis for whom structure, rules, visual cues etc. provoke massive anxiety. From the point of view of schooling, those kids might be better with no diagnosis at all than an ASD one, as its been a bit of a red herring. And specialist teachers and other professionals aren't always great at advising alternative strategies, as they can be a bit rigid in their conceptualisation of autism ( as is he DSM in my view). I speak as a professional who has been on an interesting and steep learning curve in the last few months and meeting a cohort of children has made me reflect on current practice.

[oldbirdy]

Boogle - I think you are in the same job as me. As am autism specialist I have pretty much rejected any formulaic response to autism spectrum conditions and have a 'mental toolkit' in which the first principle is 'personalise' and the second is that an autism diagnosis is no more than a signpost and starting point. My third principle is that you start where the child is. If a child is demand avoidant or showing other severe anxiety symptoms obviously any intervention needs to begin by seeing what the child can do and using that as a stepping stone. I inwardly scream at the standard response of 'visual timetable and social stories' as an identikit response to anyone with autism as I am sure you do! I don't agree that they'd be better off with no diagnosis rather than ASC; I think the key point is that people (and we as key professionals have some repsonsibility for this) become much more sophisticated in understanding the autisms and that it really is true that 'when you've met one child with autism, you've met one child with autism'.

[BoogleMcGroogle]

Support in school should indeed be needs-led. But the issue is that it should also (to be most effective) be evidence-based and there just isn't a body of evidence about how to support those children with autism who don't respond to what the evidence has so far told us are the most effective strategies. So we try to think outside the box and do what works instead of what 'should' work, but without acknowledging that there is a particular (if somewhat fluid) cohort of children (to whom we might as well give a name, although I agreed the PDA name sucks) it's hard to develop any sort of best practice, which at least serves as a good starting point.

Uta Frith in The Psychologist this month seemed to be suggesting conceptualising 'autisms' instead of 'autism', as a group of heterogeneous conditions, separated possibly by different cognitive profiles ( I don't think she means like 'IQ' test cognitive profiles, something more subtle than that) but leading to an essentially homogeneous spectrum of the condition of autism. That makes more sense to me than 'autism' and 'not typical but not quite autism', which appears to be where some of the children I meet quite often fall, and whether they end up with an ASD diagnosis is not consistent.

I don't think I'm professionally incompetent (although I might be, I suppose I wouldn't know that myself, that would be for someone else to judge), but I am nonetheless not certain in my understanding of what autism is, isn't and might be considered to be in the future, and crucially how to work with children and families to make life and learning better. I think that uncertainty is reflected within the discipline of psychology as a whole and it's the mechanism by which we strive to find out more.

[oldbirdy]

As I said before - I see a heck of a lot of autistic children whose situation has led to overwhelming anxiety and demand avoidant behaviours (school 'refusal' being a classic example). We know that anxiety takes the form of 'fight, flight or freeze' and the demand avoidant ones are simply an encapsulation of those responses. I don't see that many where the demand avoidance turns out to be absolutely pervasive and long lasting, once the child is properly supported and understood....but there are a very few. I'm not convinced that some of those parents who recognise their child in PDA descriptors are not actually recognising a chronically anxious, overwhelmed autistic child who has became avoidant as a coping strategy.

[BoogleMcGroogle]

I think we cross posted oldbirdlady, and I think we are both in the same profession. Did you read the Frith article? I hope I'm understanding what she was saying correctly.

[oldbirdy]

Boogle - I find recognising autism pretty easy; it's unusual in scope, manner or intensity in the triad. Never seen a PDA kid who wasn't very clearly autistic.

Did you know I think I'm right in saying Maslow's heirarchy of need and the human givens which we so 'assume' are correct have poor evidence bases (i saw an amusing reference to 'practice-based evidence - yes - in support of the human givens!)

I guess I am building up a big old store of 'practice based evidence' which says that standard autism interventions are a useful part of a toolkit but absolutely not to be applied to all children with this diagnosis in a blanket way. because the autisms are so hugely varied (we now understand) it is obvious that no one strategy will work for all - just as no one gene accounts for all autism.

[Marshmallow09er]

This has been really interesting to read.
(Sorry OP that this might feel it's a bit off tangent from your original post, but it's hopefully useful insights into PDA).

For me, it's not just the demand avoidance part (which DS has in spades), it's the other bits also often cited in the presentation such as a fixation on other children. DS does this - both positive (possessive) and negative fixations and it's incredibly challenging to manage - this as much as the demand avoidance itself.
Maybe this is often present in autistic children, but I do hear it often linked with PDA.

There's no easy solution I don't think - DS has been part time at school for nearly 6 months now and we're on our 3rd autism specialist in 2 years (all have been very good but massively overstretched. And we have no EHCP, unless we win at Tribunal, but that's another story).

He can't cope with the noise of the classroom plus his unpredictability around the other children is v challenging.
He's really bright but refuses to take on any new learning (but before learning became a requirement he gobbled if up - I remember asking for workbooks for his birthday pre starting school as he didn't play with toys and loved completing them. Now he's refused to write since October last year).

He does cope better with routines though, but finds visual timetables etc too overwhelming - even now / next is too much as he likes to choose himself.

I hoped by reducing his anxiety at school (which everyone involved has worked really hard to do with some success), his demand avoidance might decrease too; but this has not been the case (although rather than exploding at school he now at least uses charm or procrastination!).

I can't tell you how I much I hope his demand avoidance doesn't turn out to be pervasive and long lasting but so far no one's been able to break through. I live in hope we can find a way to harness his wonderful brain without doing his mental health any harm.

[Marshmallow09er]

Hi Polter

He's 8 (year 3)

[BoogleMcGroogle]

whether or not it's 'a thing' (and I think the jury will be out for a while on that one) I have found this booklet really useful in working with families and schools:

www.pdasociety.org.uk/education/educational-strategies-booklet-from-positive-pda

The golden rules are very simple for schools to follow, there are some useful resources and they would possibly work well with many anxious children, whatever the underlying 'cause'. I've been working with a girl recently where the school has implemented these with great commitment and consistency (and their own good humour and grace, which helps no end) and it's worked really well.

[oldbirdy]

Boogle, I do think it's a thing. Just not quite as common a thing as the number of "have you thought of pda" posts on here and other forums might suggest; I think some of those parents have highly anxious demand avoidant autistic kids who once properly supported and when their anxiety decreases are without the pervasiveness of those very few children where it really is a question of reinventing the wheel every 6 weeks or so.
Marshmallow, interestingly obsession with people is a not uncommon special interest, especially with girls on the spectrum. Often it's mum or a soap star or pop star...All common interests in NT children, but it's the scope duration and intensity which marks it out.

[crazybat]

There are so many differences between asd and pda the extreme demand avoidance is just one of them. Im a manual where you can count caffiene addiction as mental disorder something is very very wrong.

[AugustRose]

I'm sorry to hear you are having a problem with CAMHS. I suspect my DD (15) has PDA and Aspergers but haven't gone for a diagnosis yet as a Social Worker told me that our LEA don't recognise PDA.

We are currently going through CAMHS for anxiety problems but so far have only had a further referral to Barnardos MyTime. Luckily the school seem to have accepted her limitations as even she has noticed how much more lenient some teachers are towards her.