Friday, 27 January 2017

I don't think PDA is as rare as we're told.

I'll start with a disclaimer. I'm not an expert, not in the qualifications sense anyway. I have read widely around the subject of autism and PDA, and I have spent much of the last couple of years hearing very similar stories to our own with alarming regularity.

This has got me thinking, and I have a theory about this. It may be rubbish, you have been warned! This will almost certainly be disjointed and waffly as I have a helpful PDA boy around at all times now, so I'm grabbing brief moments to rant write.

To recap briefly on our experiences:

PDA boy became increasingly unmanageable and violent when he was six. Whilst the headteacher at school was lovely, PDA boy's teacher was dreadful. She was one of those, sadly not uncommon, teachers who doesn't really believe in autism unless it is obvious, she believes all students should sit smartly giving full eye contact, even those poor pupils who find eye contact uncomfortable, yet when a child will give eye contact, this means they are definitely not autistic. Because PDA boy also masked this was seen simply as a parenting problem, he was fine in school therefore the problem lay with us and only us. Even with a detailed hourly diary implemented by PDA boy's OT (occupational therapist) which pinpointed exactly how events during the school day were leading to very difficult behaviour at home, school were still in denial about his needs.

This pattern has been repeated at every school PDA boy has attended. There are a few notable people who have been amazing, but on the whole, the many people who have worked with him have been able to run with their own rigid views about autism being obvious and children being naughty little so-and-sos.

Unfortunately, the way that assessment processes in many areas work, relying on schools giving accurate details and having a knowledge of autism that, to be frank, even many experts do not possess, means that for so many children who mask or do not show the most well known signs of autism, they are likely to go unsupported and undiagnosed, with unfair assumptions made about them (weird, manipulative, naughty) and their parents (weak, useless, pandering).

There is also the issue that for many children who don't mask, they may not be showing the expected behaviours, perhaps eye contact is not a problem, they may be eloquent and be able to mix ok with others, so even when concerning behaviour is shown, lashing out, frequent outbursts of anger, rudeness, or like a child I know, being unable to take part in work that doesn't interest her, hiding when overwhelmed, and these are all seen as wilful, disruptive behaviours, rather than spotting that their conduct indicates a root in something other than naughtiness or a desire to disrupt lessons.

So many signs go unrecognised as potential autism, and are dismissed by people who simply do not have the qualifications or experience to do so.

Plenty of parents have the experience of schools filling in important questionnaires incorrectly which obstructs the diagnosis process, but they have limited chance of overturning this; the common assumption is that parents lie, teachers don't.

During PDA boy's assessment his ADOS results and our DISCO interview (both where he scored over the threshold for ASD) were both ignored in favour of school observations. We know he showed signs in school as the NHS psychologist had spotted them and told us, even if she did then leave them out of the final report. We know he showed signs in school because parent volunteers, in to read with children, would warn me of impending meltdown as they could spot the telltale signs of blank, still face and redness under his eyes. If they could spot it and they were only in school for brief periods of time, it has led me to believe that some teachers (most in our experience) simply do not want to engage with any suggestion that a child may not simply be naughty, so deny everything, and because they are the experts in children, their opinion holds more value.

I live in a rural area, lots of green fields and countryside, generally a lovely, quiet area. Within a six mile radius there are three small schools each with between sixty and a hundred pupils, possibly 240 children in these schools in total.
I'm a bit of a hermit, I tend to keep myself to myself, I don't gossip, so I'm not best placed to hear about children having difficulties in school, yet in this small area I personally know five children who are having the same difficulties as PDA boy did in primary, having spoken to their parents, they appear to tick boxes for PDA and either mask exceptionally well or present atypically. Again, my disclaimer, I am not an expert, there may well be other explanations for these childrens' behaviour, but it strikes me as interesting that in my tiny world I know five children who are displaying behavioural problems in line with PDA, and each and every one is receiving no support in school, and when the parents approach school, the issues are dismissed, ignored, denied. Just like they were for us.

So my theory, in a nutshell, is that there are more children with PDA than are known about, and because children with PDA often do not present as typically autistic, they are far more likely to fly under the radar. When teachers are relying on their limited, outdated autism knowledge, which often focuses on common ASD myths (eye contact, no friends, "look" different), this will mean more children go unidentified. Add this also to a system which values the opinion of such teachers over that of parents who live with the child and often have to manage the fallout following their child's day at school, you can see why so many parents find the assessment process traumatic and unhelpful.

For a child to receive a diagnosis of PDA several things need to happen:

Parents need to know about it in order to understand that this may be what is causing their child's difficulties.
Teachers need to accept that autism is not always obvious to them.
Support workers need to recognise the signs of PDA, either from observations or from telltale traits when the child is discussed with parents.
Referrals must be made to the correct place, somewhere that will recognise and diagnose either PDA or ASD with demand avoidance.
When all of the above fails, as it is more than likely to, we then rely on parents being able to find the money to go private, or to be able to persuade their GP to refer them out of area with CCG funding (which is only likely to happen in the most extreme cases).
It's quite easy to see how so many children and their families cannot access adequate information, understanding and support, and it is obvious to me that in many cases this process cannot be followed, due to lack of knowledge and poor judgement.

When PDA is declared a rare form of autism, it is going by the small number of children who actually reach the point of diagnosis.
When people with PDA are well known to be sociable on a surface level, and are often able to mask to a high degree, it stands to reason that current diagnosis rates are probably much lower than they should be.

So what could be done?

First and foremost, autism training needs to be vastly improved. Ideally involving autistic people, who better to advise on all matters autism than those who personally know the struggles and pitfalls intimately! We also need a better understanding that autism does not always mean the most extreme traits all of the time, which I have noticed in training sessions, even when delivered by support workers with a lot of experience, which leads me to believe that generalised ASD advice can be counterproductive. Far more useful to aim to support individuals, working with parents to learn how best to support the individual in question, although in a school unwilling to support a child using well known ASD strategies, a personal approach may be beyond them.

We desperately need to drop the horrible assumption that parents are being dishonest, or aiming for some sort of gain, financial or otherwise, instead of parents seeing differences in their child and desperately trying to help them.

I don't think teachers should be given such a big a role in the diagnostic process beyond facilitating observations and taking on board more appropriate strategies. An autism diagnosis is a medical process, there is no place in proceedings for individuals whose knowledge is often steered by personal opinion rather than fact.

There must be more acceptance about PDA. We are at a point in the country where confusion is rife. Some areas are beginning to accept and diagnose PDA, in other areas PDA is flatly denied. In my area, CDC is beginning to accept PDA, CAMHS is in denial, so even if a child does receive the correct diagnosis, obtaining any meaningful support can be impossible. Unfortunately, when it comes to ASD and co-occurring mental health issues, there is too much leeway for unhelpful personal judgement to obstruct timely intervention.

I don't think PDA is rare, but I think we are still a long way off a point where there is the expertise to reliably identify it, and a long way off there being adequate understanding in the early stages of the diagnosis process.


  1. 100% agree. The masking is what meant our youngest child did not get the additional PDA diagnosis she should have had, instead she got demand avoidance and high anxiety but a statement it was not PDA, simply due to the masking in school (which was in fact due to almost abject terror of their behaviour management systems and getting told off by teachers, the fear being ironically down to her severe PDA-induced anxiety) and their total lack of understanding that as she has a dual ASD (classic HFA as well as PDA) she couldn't have PDA because her socialising was more like HFA.

    This was an assessment by a clinical team including someone who claimed to have been consulted for the development of the PDA screening tool, the extreme demand avoidance questionnaire. It's shockingly worrying. I strongly believe PDA is much more common (as is autism) than the claims allege.

  2. It is very worrying. Masking really seems to throw the people you would really hope had the experience to understand it.
    This is a good article about professional incompetence, which seems fitting with so many families' experiences (sorry, not a clicky link)

  3. Well said!
    If only the so called "professionals" (some highly respected in the ASD world) would read this, learn something, and stop putting families through years of stress fighting for their children's right to a correct diagnosis. I also agree that PDA is not as rare as it's made out to be..