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Why Labels Matter

Recently the Integrated Care Board (ICB) of Bristol, North Somerset and South Gloucestershire announced changes to the autism assessment criteria, the result of which is effectively to deny the possibility of an autism diagnosis to any child not considered to be ‘in crisis’. For parents and carers battling to obtain recognition and support for their children and young people with SEND, many of whom are neurodivergent, this is a huge blow. Compounding this is the frustration, added to by decisions such as these, that they are misguided in seeking a diagnosis in the first place.

Frequently well-meaning (and not so well-meaning) armchair psychologists speculate that diagnosing children as autistic, dyslexic, ADHD etc predetermines how they and others will perceive them and ultimately limits their potential. Wouldn’t it be better, they say, to focus on a child’s strengths rather than dwell on their challenges? Well, maybe. It is both upsetting and exhausting to continually have to highlight a child’s difficulties, as any parent or carer of a child with SEND will tell you. Unfortunately, however, given the world that we live in it is also necessary. This is so not only to access support and services that are very often subject to stringent gate-keeping via diagnosis, but also to enable children and young people to understand themselves better. As recently published NHS guidance states in relation to autism:

For an undiagnosed autistic person access to personal understanding, healthcare, education, social care, reasonable adjustments in the workplace, statutory protection from discrimination, or benefits may be withheld… Clarity about autism diagnosis can be validating for many people in their day-to-day lives. For example, this can help with the development of a positive autistic self-identity and foster connections with the autistic community”.

And whilst there is a legitimate debate to be had about the role of diagnoses in the context of neurodiversity (and the view that they are unhelpful and pathologizing should not be dismissed out of hand) they are undeniably important because they vindicate people’s real lived experience, remove a degree of shame and blame, and open up a path to self-actualisation. It is also clear that people are given labels every day regardless of any diagnosis that they may or may not have, and those labels –lazy, awkward, clumsy, selfish to list just a few of the less offensive ones - are far more damaging.

But let us pause for a moment to consider the inherent inequality of suggesting that neurodivergent children (and adults) do not require diagnosis, that in fact a diagnosis could be positively harmful to them, when the same logic is not applied to other forms of disability. It is not routinely suggested that labelling children as deaf or blind or paraplegic is unhelpful and limiting and we should therefore stop. Rather it is understood that such labels identify something important about that person and how they experience the world, and – at least in theory - help those around them to know how to support them. It is also implicitly accepted that a deaf person will still be deaf whether you formally acknowledge their deafness or not. And yet when it comes to neurodivergent people the same rules do not seem to apply.

In truth it is not labels themselves that are the issue, but society’s views on what those labels represent and the stigma that accompanies those views. But like deaf people, neurodivergent people will remain neurodivergent regardless of whether they are acknowledged as such. Moreoever, the downsides of recognition are largely hypothetical, whereas the damage done by failing to provide the support that such recognistion could and should bring is, is all to real.


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