Labelling ‘Neurodiversity’ – Celebrating Neurodiversity Conference 2019 Discussions

 

Labels…

Humans have a need to label pretty much everything. Labels seem to make us calmer, making the big unknown seem more familiar and controllable. If you think about it, nothing really exists as what we know it as, until a human being comes along and decides that that is what it is.

Should we be using labels?

There are pros and cons of putting a label on anything, let alone something as vast and complex as neurodiversity. A correct label can feel as if a weight has been lifted form that persons shoulders. It can feel as if the answer to questions concerning their ability have been answered in the moment of validity and identification that a label can bring. ‘It was the characteristics of my Dyspraxia, not just me.’

A label can also feel like it comes with a key to unlock support that had previously been unattainable. Huge strides have been made in recent years in the quality of support those with neurodifferences can access. Cognitive, positive, and workplace needs assessments, strategy coaching, assistive technology; all now accessible to those with a neurodifferent diagnosis through government funded organisations such as Access to Work. These varying types of support are crucial for those with neurodifferences to be able to discover their strengths and utilise these in everyday life. But why should you need a label to be able to access this support network, if you have the challenges associated with a neurodifferent mind?

As discussed at our recent conference, some view labels a negative experience. Whilst a label can bring with it a validation perceived to be needed for relevant support, it can also bring with it predetermined perceptions of said label. It is very easy to forget the strengths that neurodifference can bring when we have a long history of associating these superpowers with negative characteristics. There is also no guarantee that a label will bring with it the vital emotional and practical support needed, to recognise and grow neurodifferent strengths. A label can leave people feeling limited, and not knowing what to do with their piece of paper diagnosing them as neurodifferent.

Language defines experience.  In 2014 our CEO, Nancy Doyle, conducted a survey for the British Psychological Society asking people how they would like to be named.  Neurodiversity won, hands down.  Neurodiversity was a welcome alternative to the ‘Specific learning disability’ term, which erases strengths and directs us to education as opposed to lifelong experience.

But the originator of this term, the venerable Judy Singer, did not intend it to be used as a proxy for disability, more a comment on the natural variations and diversity in our cognition, as a species, much like diversity in strength, agility, and personality. So it is time for a new survey.  What would you like to be called?

Answer here: https://www.surveymonkey.co.uk/r/JPRJ6BQ

Is the issue with the label itself, or what we are doing with that label?

Are the guidelines set too rigidly to appropriately support those who are neurodifferent? When labelling neurodifference, we must remember that we are all different. Neurodifference will be expressed uniquely from person to person, so why do our human derived labels not reflect this?

Does it matter if we are labelling neurodifference…?

…as long as we are supporting those with neurodifferent characteristics to develop and flourish? Ultimately, it is up to the individual on how they use their label, if they decide to use one at all. As Dr Helen Taylor of Cambridge says, are we really just referring to complementary cognitions?  A blend of specialists and generalists in our communities?  The only problem is how polarised our view of success has become and the inflexibility of our scaled up institutions.

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