Learning Disabilities & Autism Opinion

Why language matters in transforming care

Dr Jeremy Tudway

Dr Jeremy Tudway, Clinical Director at Dimensions UK

Ten years on from Winterbourne View, whilst Transforming Care has made some progress some basics remain incomplete in the transition from institutional environments to person-centred homes.

In particular, I believe social care needs to be reframed; instead of something that happens to people in the guise of doing for, it should always be a process by which we support individuals together, keeping their voice at the centre of every decision, in line with visions like that of #socialcarefuture.

This starts with listening to the language that people wish to have applied to their lives. And to fully transform care, we must change how we speak about people’s experiences and support them to speak for themselves.

Reframing experience

A key issue is the concept of ‘challenging behaviour’ or ‘behaviour that challenges those around them’. When we speak about behaviour as ‘challenging’, we risk speaking in terms of our own perspective, rather than recognising the individual’s personal experience in a world that may be confusing and unpredictable. As an imposed term, it also risks becoming interchangeable with a person’s identity; the behaviour becomes the person, overlooking that distress is prompted by external factors.

That is why I fully support the families and advocacy groups I have spoken with who are calling for a change from language like ‘challenging behaviours’ towards ‘behaviours of distress’. This consciously infers causality, putting the onus on others to address what is causing the distress, rather than addressing the person themselves. Through this reframing, we can better respect people’s lived experience.

Language must reflect people’s own experience

Another issue to address is how autism and/or learning disabilities can often be perceived as a ‘problem’ to be ameliorated or medicated.

The narrative is frequently one of pathology, establishing footing for people to be discussed in terms of their ‘issues’ or ‘challenges’, or excluded from assessment of important elements in their lives. Whilst many parts of the social care sector make efforts to consider lived experience, this is often less notable in clinical environments.

So we should always recognise that a learning disability and/or autism are life-long ‘conditions’ that cannot be subject to treatment. At best, interventions can provide people with new ways to adapt their responses; at worst, medications can have significant side-effects.

Closed environments have a part to play in perpetuating the old fashioned model. Indeed, the scandals at Winterbourne View and Whorlton Hall rightly caused disgust, but similarities to the Ely Hospital inquiry in 1968 indicate an on-going issue.

Language must therefore be changed across all settings to ensure best practice is truly being lived and breathed every day. Whilst Transforming Care has achieved some progress, there is still ground to be gained in a relatively small step for professionals and a huge leap for people with autism and/or learning disabilities and their families.

Small changes, big impacts

 Indeed, simple changes to language can empower people we support by recognising that they are the experts in their own experience. So I would like to encourage some self-reflection from professionals in the care sector:

  • Can you say what you always do with people instead of to or for them?
  • Do you uphold the principle of nothing about us without us?
  • Do you recognise ‘challenging behaviour’ as a stressed attempt to communicate, rather than an aspect of someone’s personality?

The first step to change is recognising that there is something to change. We are all fallible, so embrace opportunities to do things differently!



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