The 'over diagnosed' debate

Is the fear around over diagnosis robbing our children of early intervention?
Is the fear around over diagnosis robbing our children of early intervention? Photo: Getty

Conversations about modern-day parenting are fraught with danger. It seems everyone has an opinion – regardless of whether they’re a parent. And when the talk turns to children’s behaviour and paediatric mental health the conversation often explodes into a full-blown war of words.

Lately, we read a lot about the so-called ‘over diagnoses’ of our children. An increasingly popular view suggests we are medicalising completely ‘normal’ aspects of childhood. Autism, Attention Deficit Hyperactive Disorder, Asperger’s Syndrome and Oppositional Defiance Disorder are just some of the conditions we hear about more often these days – and that attract considerable scepticism in some circles.

There is no denying that we have seen an increase in the number of children being diagnosed with mental health disorders, but are there more children with these disorders – or are we just better at diagnosing them? Some suggest our society is labelling children as disordered if they don’t comply with our ideas about the perfect child. You know the one: talking in sentences by eighteen months, playing piano and violin by the age of two, killing their first NAPLAN on the way to their law degree. But is this really what’s going on, or is it an urban myth?

In my day-to-day job at the Lizard Children’s Centre, I meet parents just after their child has been diagnosed with an autism spectrum disorder. I’m there when the tears are still fresh, the grief is raw, and the question ‘what do we do now?’ looms large. Those who talk about ‘over diagnosis’ often suggest that parents purposely hunt out labels to feel special, or to excuse poor parenting, or even to access funds. But the idea that the parents I see are fist-bumping me and high-fiving one another because they received an official diagnosis is preposterous. Wow, they’ve lucked on all those endless funds to help pay for early intervention … Oh no, that’s right, there aren’t any.

The absence of these types of diagnoses thirty years ago didn’t necessarily mean disorders like autism or ADHD weren’t there; they were just called something different. We were good at sweeping difference under the carpet, or outsourcing it to institutions. Outside the norm wasn’t welcomed then – and really isn’t welcomed all that much now.

If a girl who couldn’t sit still and learn at school wasn’t diagnosed with ADHD (and thus received no treatment for it), would she have eventually ‘settled down’ and now be mid-way through a medical degree?

And what do we do with children whose speech and communication delays are so severe that if left untreated at a very early age, they may never go on to lead an independent life? Should we hold off diagnosing them with autism – and therefore treating them?

In my opinion, not diagnosing a child who clearly struggles with mental health issues or a developmental delay because we are concerned about ‘over diagnosis’ is akin to child neglect. The process of diagnosis is not fun, but denial – and therefore obstructing treatment – is counterproductive and appalling.

Diagnosis suggests that we have looked into something and measured it with recognised assessment tools, backed by medical science – and that we’re on the road to effectively addressing the problem.

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A diagnosis is nothing more than a snapshot in time to say this is what we are looking at. The response it triggers – effective intervention, support strategies and possibly medication – is what determines a child’s long-term outlook. There seems to be no lack of professionals prepared to be part of the assessment and diagnosis stage of a child’s condition, but see the numbers dwindle when we get into the messy nitty gritty of intervening post diagnosis.

I challenge anyone who believes that we ‘over diagnose’ children to make ourselves feel better to spend a day with me at the Lizard Centre, working with parents caring for children who genuinely struggle, who have just emerged from the gruelling process of diagnosis – and to not change their minds.

The day your child is diagnosed with something as life-altering as an autism spectrum disorder is devastating. There are few words to describe that pain. However, the fact that someone recognises this problem and can see that your child is struggling – that they’re not writing it off as ‘bad behaviour’ – is also a kind of relief. And it’s not comparable to applying cream to a burn; it’s more like removing the axe from your head.

It is patronising to minimise a child’s condition as something that he or she will ‘grow out of’. Maybe they will, but would you want to take that gamble if it was your child? I certainly don’t, and I don’t want any child to be left behind because the grown-ups in the room didn’t analyse the situation, using the best medical resources available, and act.

Let’s recognise these conditions for what they are and get busy treating those children who need our help. After all, isn’t that what being a good parent – and a good citizen – is all about?

Nicole Rogerson is the CEO of Autism Awareness Australia and the Director of the Lizard Children’s Centre. She is also mum to Jack (17yrs old on the Autism Spectrum) and Tom (12yrs old and apparently ‘normal’)

Nicole is taking part in the upcoming Intelligence Squared debate: Our Children Are Over Diagnosed at the Melbourne Town Hall on June 18. Tickets $20/12 concession. Tickets at wheelercentre.com

As a special offer for Essential Kids readers, take advantage of the Wheeler Centre's baby-sitter discount and quote 'debate' when booking to receive $5 off the price of your ticket.