No diagnosis? What's the Big Deal?

Today is Undiagnosed Children's Day. And yes, every day is a particular awareness day now it seems, and yes, it's Allergy Awareness Week too and I already blogged about that on my Recipe Blog.... but this one, this day, really REALLY matters.

You would be forgiven for thinking a diagnosis is an expected and usually almost inevitable end point when you or your child is referred for consideration of a collection of symptoms, often present since birth.  Indeed when you are first sent to hospital with your baby you have high expectations of enlightenment from the medical profession, and although no one seeks a "label" to define their child, it's a commonly accepted fact that a diagnosis in the UK is a passport to services, support, understanding and a pathway to appropriate supportive - and preventative care.

So you might be shocked to learn that  it is not given similar status by Consultants and health professionals. Indeed, there is a culture in this country of diagnosis avoidance, a pretence that by hiding from the logical, avoiding the obvious or avoiding searching for the unexpected they are in some way leaving doors open to you or your child.

I'm hoping for an ASD, ADHD, Down's and Spina Bifida Baby......

Because all parents-to-be, when starting trying for a baby, hope their offspring will be as healthy and happy as possible. Because we are human, because we associate good health and happiness with wellbeing and they are surely two of the most important gifts to bestow on anyone. Surely that can't be controversial?

And equally, once that tiny bundle arrives in your arms, you love it unconditionally, and want the very best for your child. It doesn't matter what peaks and troughs there are ahead on the roller coaster of life, you're in it for the long haul and are your child's fiercest advocate. Irrespective of anything. And that shouldn't be controversial either.

SATS - a sandwich, not a hot potato.

Yesterday Nicky Morgan announced that the Conservative Party would introduce SATS re-sits for children who perform badly in their Year 6 primary school tests. In the short time since many have already written of their strong anti-SATS feelings, compounded by anger and frustration that children will be seen to fail in this way. Having written myself against Gove's extreme passion for measuring and testing previously, you would be forgiven for thinking that I would be equally against this new suggestion. However, I don't think the situation is as simple as that, and - as ever, we are missing the elephant in the room.

The question is not "Should we have SATS, and are they good for our children?"

but 

"What is it about them that upsets parents, teachers and possibly children?"

Light it up Blue

A sobering thought, don’t you think?

But what if the word “excluded” didn’t refer to a single incident at all?

I still have a stack of fixed-term exclusion notices for H from when he was very young — forty-six of them, all issued before he was six and a half, and more than a year after his Autism diagnosis. It raises an unavoidable question: what exactly is happening in our schools when children with recognised developmental conditions are repeatedly excluded for behaviours that are fundamentally part of their condition?

Despite the tireless efforts of the National Autistic Society, local groups and countless parents, teachers are still entering the profession without the preparation they need to support autistic pupils. My own PGCE allocated half a day to SEN as a whole — nowhere near enough time even to familiarise ourselves with the full spectrum of physical, emotional, behavioural and medical needs we were likely to encounter, let alone explore how to teach and support children with them. And beyond training lies a deeper reality: for many autistic children, mainstream school is simply not an appropriate environment. Forcing a square peg into a round hole was never going to work, no matter how determined the adults involved.

As a parent of autistic children and a qualified teacher, I’ve learned more about learning, development and support than any lecture could have given me, yet ironically I wouldn’t currently be eligible to bring that experience into a classroom. Years spent caring for my children — writing every word of my son’s Statement myself — do not count as “official” experience. It’s a reminder of the odd, persistent divide between parental expertise and professional structures, and of why many families still feel they are battling the Local Authority simply to secure the support their children need. It doesn’t have to be that adversarial. In many cases, the simplest route to inclusion is to acknowledge that there is no single “correct” way to learn, and that expecting children to fit one predetermined mould is where the problems begin.