Autism Awareness Week 2022: Neurodiversity and neurodivergence

Last week was World Autism Acceptance Week. I believe the Royal College of Psychiatrists is in a strong position to be at the forefront of the medical colleges in promoting autism awareness and indeed, autism expertise) for our members. After all, we know that autistic people are at much greater risk of developing mental health problems and are significantly over-represented in psychiatric community and inpatient settings. Why shouldn’t autism be the business of all psychiatrists?

Leading up to autism acceptance week, I have had meetings with the organisations Autistic Doctors International and STAND (the Society for Tourettes, Autism and Neurodiversity), both of which have autistic psychiatrists in their membership. They told me that many autistic psychiatrists report being relatively unsupported in their training and careers, and that their psychiatric training in autism doesn’t always correspond with their lived experience of being autistic. Dr Sue McCowan and colleagues describe some of these issues in more depth in their recent BJPsych editorial. Dr Tahleel Javed, founder of STAND, has shared her own story in a recent series of blog posts for us.

It seems clear that the College could be doing more to support members who have neurodevelopmental conditions and associated disabilities. I know that Dr Raj Mohan (College Joint Lead for Race and Equality) is very engaged on this subject. Following a recent scoping group on disability, attended by psychiatrists with lived experience, three priority areas have been identified by the College:

1. Supporting reasonable adjustments for all members who need it –The College itself must set an example in implementing reasonable adjustments for its own disabled staff, and use its influence over employing mental health organisations to comply with equality law.
2. Clear statements from the College supporting disability equality: The College must be visible and active as an organisation that welcomes equal participation of individuals with disabilities, including neurodevelopmental conditions.
3. The College being an inclusive organisation for its members: for example, to ensure all online content including learning material and publications, conferences and events are accessible for people with disabilities.

At the most recent meeting of the College cross-faculty autism group, we had a discussion about the concepts of neurodiversity and neurodivergence. This is a contentious subject, with a divide between the medical model of disability (where the impairment is intrinsic to the individual) and the social model of disability (where impairment is because of lack of adaptation by society at large).

Although neurodiversity is a term increasingly used by service users, clinicians and policy makers, it sometimes seems to me there is a lack of consensus over what exactly it means. Neurodiversity is usually defined as the range of differences in brain function throughout the human population, whereas neurodivergence is variation from ‘typical’ function.

In terms of NHS service planning, should the term neurodivergent be reserved for people with a formal diagnosis of autism or ADHD; or should the concept be broader? The latter potentially includes people with learning disability, autistic/ADHD traits, other neurodevelopmental conditions like dyspraxia, dyslexia and Tourettes syndrome, people who self-identify as autistic/ADHD, and even people with other psychiatric conditions with a significant neurodevelopmental component (most notably schizophrenia and OCD). And where should the lines be drawn between difference, impairment, and disability?

These are difficult questions to resolve. One point of agreement in our group was that eligibility for services, support and reasonable adjustments should be needs-based rather than diagnostic-label based. Mental health, social care, and equality legislation are in theory already supposed to be based on need rather than diagnosis. However, the reality on the ground for most service users and families is that a (medical) label has become more or less essential to access the necessary support.

Perhaps we need a new paradigm in which the individual’s specific pattern of strengths, difficulties, needs and aspirations is put front and centre of care planning, with less reliance on diagnostic labels to determine treatments and service structures. In the meeting one of our members, Dr Prem Shah, described a potential way forward to reconcile the medical and social models, which will be published in a forthcoming BJPsych paper.

As psychiatrists we are required to follow the diagnostic criteria set out in the DSM and ICD criteria. But we also need to recognise the wider social model, the concept of neurodivergence, and the value and importance of self-identification for many people in the autism community. I don’t pretend to have all the answers, but I do think it is important that psychiatry is part of the conversation.

Written by Dr Conor Davidson