Pushing for a diagnosis?

There has been an article printed in the Guardian which I just couldn't ignore this week - 'Parents pushing for Special Needs Diagnosis for children'.

This has of course done the usual Facebook rounds, shared most likely by two kinds of people; those who feel somehow vindicated by this report (carried out by a provider of assessments to schools) because it mirrors their beliefs, and those, most likely parents of children with Special Needs themselves, who are completely incensed by the idea that anyone would want to make up a label to gain some sort of 'fantastical' benefit.
Hmm. Wonder if you can guess which camp I am more likely to fall into?!

As it happens, difficult though it may be to stick to on a Friday night, I am going to try and be the voice of reason here.

Whether to give a child a label or not has been discussed many times before. I feel it shouldn't be about labelling a child, it's about finding the best ways to support a child. Sometimes the best support only comes with the label; some children manage fine or may even fare better without.

The gist of the article by the Guardian is that middle-class parents who know how to work the system are pushing for a diagnosis while other children slip through the net, and that more than half of teachers polled believe there is misdiagnosis among pupils. Apparently 38% (of those polled) agreed that some parents who push for their child to be recognised as having SEN (special educational needs) do it to help their youngster gain a competitive edge in exams.

Obviously as the voice of reason I'm not here to deny any of these findings, although I do find it sad that they've been reported in this way. Those who will ultimately be affected the most are not the parents who the article is aimed at, but the children, most of whom will have bona fide needs of one sort or another.

I'm guessing the first statement is actually very true; that middle-class parents, or in fact any class of parents who have taken the time to try and understand the system, will push for a diagnosis. Meanwhile, other children slip through the net because their own parents are not so proactive, or because their parents have other issues to contend with. This might be because they are suffering from financial burdens which mean it's impossible for them to travel, or to be online, or perhaps there's a language barrier, or they have a full time job, or any other reason which might make it difficult for them to research the truly baffling system.

Teachers believing in misdiagnosis is a bit of a sticking point for me from this survey though. I don't know how we decide who is ultimately best qualified to give a diagnosis - parents, teachers or practitioners who have trained in certain areas of SEN? You could argue that a teacher spends a fair amount of time with a child.... they certainly see their behaviour in the classroom most. On the other hand, parents generally spend a much larger amount of time with their child and very often deal with the fallout of demands which take place in that very classroom - should this account for nothing? Practitioners have to study for great lengths of time and may know much more than me about the workings of a brain in general... but have they been specifically trained in how each individual child with SEN is thinking, for example? Surely we can all agree, not to disagree, but that everyone has some very valid points and that it's only when we all communicate together that we can get a clear picture of a child and their needs?

The truth is that there may well be some teachers who have met one or two parents who seem to be pushing for an unnecessary diagnosis. This brings to mind benefit fraud, and the issue with disability fraud at Disney which has led to the parks cutting back on their offering for those with additional needs. Or those who park on double yellow lines when they don't need to, or those who think it's OK to park on the zig zags outside school... the truth is, there will be some parents like that in every community. If the system is set up such that there's a way to 'bend the rules', some inevitably will. I'd like to suggest that 'some' is a much smaller number than all the others who are doing their best to do right by their child. Not all parents need to be tarred with the same brush.

Reports like this are in no way helpful, and can actually be very harmful to children with additional needs who may already struggle with extra prejudices.

There are bigger issues to discuss here which I will definitely come back to in more detail in the near future. One is that I have heard from many parents of children with additional needs who have not even started out on the path to getting an EHCP* because of the stories they've heard about how difficult it is. Then there are those who have done all the hard work involved in getting an EHCP agreed for their child, but who ultimately realise that there is no suitable education provision anyway so the whole process was verging on pointless? Maybe in fairness there should be a survey done of those parents, and those results then splashed about the news headlines?

I've also heard from several parents who believe their child may have Pathological Demand Avoidance (PDA), that they are being told by some practitioners that the notion of PDA is ridiculous, a 'made-up' diagnosis. Made-up by who, exactly? Elizabeth Newson wasn't some half-crazed mum who needed an answer for her own child, she was a well respected developmental psychologist. Do her research and findings count for nothing?

Why are some so keen to blame the parents for everything? I know it's easy to judge, and we all do it sadly on a daily basis - I see 'those types' of parents who will get the blame first. Even if the parents are struggling, it doesn't mean that the children of those parents don't have additional needs. Those children still need help. Attacking the parents and not offering support will only have a knock-on effect.

Please, before you judge, think of the children.

For more reading on this I'd recommend a survey of teacher prejudice by Starlight McKenzie, which also includes a great summary of the Whole School SEND event held on Thursday this week, and of course a comprehensive summary of the issues by Special Needs Jungle.

*(Education, Health and Care Plan - a document which should ultimately detail the support your child with SEND needs)

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