Autism and healthcare: multiple perspectives

This blog accompanies a twitter chat on 19 June 8pm UK time. Joining a twitter chat is easy – use your usual provider and follow #ebnjc.  Remember to insert #ebnjc in all your tweets for that.

Autism is not one distinct ‘thing’: it is social construction that is often described in a neurobiological way and encompasses a range of ‘conditions’. Diagnosis focuses on persistent deficits in social communication and interaction, and restricted, repetitive patterns of behaviour, interests and activities. Sensory over-sensitivity and under-sensitivity are also common features. It commonly co-occurs with learning disability, affecting about 45% of that population.

One key feature of ASD is that it is hard for a neuro-typical person to appreciate the experience and it is a far more diverse experience than is usually appreciated. A person with ASD may be severely affected by their condition, requiring emotional and physical support and care 24 hours a day. At the other end of the scale there are people neuro-diverse people living independently and by any measure society might choose to use –successfully. While a small proportion will have extra-ordinary skills (associated with memory) most do not, but such individuals are remarkable and therefore disproportionately represented in media reports.

People with ASD often describe themselves as feeling excluded and out of place, unsurprising since the space we occupy is designed and managed by the neurotypical. We are fortunate to live in age where autobiographies and qualitative research provides a rich source of information about ‘what it is like’ to be a neuro-diverse person in a neuro-typical world. This information is useful but is limited by the fact that the authors and participants only represent a specific sub-population – those who are better able to manage the rules of the neuro-typical world and articulate their experience in a way that is accessible. Experiences of those more profoundly affected tend to reported through the lens of the carer – still a rich and useful resource but different.

It is important for health care professionals to have a good understanding of ASD. People with ASD have high levels of co-morbid medical and mental health conditions including gastro-intestinal, seizure disorders, depression, anxiety, and bipolar disorder, which bring the person into a confusing and over-stimulating neuro-typical world regularly.

Questions for our chat:
What are your experiences of being neuro-diverse in a neuro-typical health care world?
What are your experiences of caring for a neuro-diverse person in the health care setting?

Recommended reading:
Davidson J (2010) It cuts both ways: a relational approach to access and accommodation for autism Social Science and Medicine 70(2): 305-312

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