Label me?

Parents waiting 3 months for a CAMHS appointment, 6 months to see an Occupational Therapist or 2 years for a diagnostic assessment for autism. Secondary school children on an SEND register with no chance of seeing an NHS Speech and Language Therapist unless they have an EHCP. Families who can’t afford a dyslexia assessment at £500+. All these circumstances limit the family’s chances of being able to put a name to their child’s difficulties. How much should this stand in the way of children making progress in school?

Parents’ responses to diagnosis

A diagnosis of ADHD for one family will begin a journey of acceptance, understanding, environmental adaptations and advocacy from the child, family, school and community in serving the interests of the child. It will be the catalyst for an approach that says ‘I find X more difficult. Therefore, I need to work harder than most people at Y and it would help me if you could do Z’. They look back on the day of diagnosis as the day that transformed their child’s life for the better.

A diagnosis of ADHD for another family will begin a journey of grief, denial or lowered expectations. Instead of a recognition that advocacy – and eventually self-advocacy – is needed to help the child have their needs met, there begins a reluctant acceptance that the child cannot succeed, rather than a conversation about how the child can succeed. They look back on the day of diagnosis as a trauma.

I make no judgements on the second family. The grief that families can experience in these circumstances is very real. Parents of children with SEND will have their own process to go through and may well be entering a world about which they know very little; they need to be listened to and supported by schools.

So the acceptance of a diagnosis is not straightforward. But in many cases, neither is the journey towards that diagnosis, which often takes a great deal of persistence, a lot of patience and in some cases a significant price. The result of course if that many children who might receive a label don’t. What are the implications of this? It’s easy to argue that waiting lists should be shorter and access to services simpler and free. Of course they should. But that won’t be happening fast. What are the implications for school professionals when our children don’t get diagnosed?

SENDCOs’ responses to delayed diagnosis

I read a Huffington Post article last year about unacceptable waiting times for autism assessment and the subsequent damage this does. The frustration felt by a parent waiting to find out if their child meets the criteria are totally understandable. But as school professionals, shouldn’t we in many cases be able to look at the child’s strengths and struggles and use the assess-plan-do-review cycle to attempt to support the child, irrespective of their diagnosis?

If every person with autism is different, every child with autism needs a personalised response to the things they find difficult. That means that, irrespective of label, we still need to treat them as an individual. We still need to support them in a bespoke way, which may do no good at all to the next child with autism. This bespoke approach means understanding the child. And if you understand the child, why the need for a label?

Seeing a child, not a label

It is true that, in many cases, you need a diagnosis in order to access services. To get an EHCP, to access funding, to see a specialist – you need a diagnosis. But the danger here is inaction from professionals.

For a SENDCO working with colleagues to support teaching and learning, there is a clear advantage to being able to say ‘these are the students with ADHD. That means they’ll find X difficult; this means we should all do Y to support them.’ However, there is a danger in that approach. Though it may be seen as a way to get messaging out about a large number of children quickly, it has a danger attached to it that the condition comes first and the child second. That a teacher treats all children with ADHD the same, without appreciating that some will need a check-in every 2 minutes while others will find it intrusive; some will benefit from a seat at the front while others need a seat right at the back.

The way forward

This is a sensitive topic. I’ve met parents who won’t go near a clinical assessment and other parents who work tirelessly for a label for their child. I’ve been delighted and frustrated by both approaches in equal measure. I’ve met teachers who reject labels and others who put a child’s label at the forefront of their planning and delivery in class. I’ve also been delighted and frustrated by both approaches in equal measure.

The answer to all this of course is to be guided by labels but not governed by them. To know the child as an individual first and then to use any diagnoses as steers towards what they might find helpful/unhelpful, rather than as labels that define them.

A label only carries the weight you give it. But in an overstretched system where those who perhaps should receive a label don’t, SENDCOs need to feel confident in their judgement to agree what support the child requires, irrespective of a label. They need to use the assess-plan-do-review cycle and be dynamic in how they respond to the children in front of them. They need to know the support that a label can bring but focus on supporting the child and family first, and pursuing a label second.

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