I am about to begin a new job in the NHS, which will involve splitting my time between being a researcher, teacher and practitioner. My new job will be working with children and young people with autism and other neurodevelopmental differences. Our understanding of autism has changed greatly since I graduated from the University of Kent and started in my first Assistant Psychologists role about fifteen years ago. However, autism remains an enigma. The rates of referral for assessment have increased and we are diagnosing more children and young people with autism. This presents challenges for services and society as a whole. How do we meet the needs of people looking for answers regarding their strengths and difficulties? How do we adapt as a society to embrace these differences?
I went to a talk by David Skuse before the pandemic, he explained that all of the areas of associated with autism are normally distributed in the population. This means that like many psychological characteristics, most people have average social communication and reciprocal social interaction and fewer people who have excellent or struggle in these areas. However, as time passes where we are drawing the line between what we consider typical, as opposed to consistent with autism is very slowly moving closer to the average. One of my colleagues told me that many years ago in autism services you would not have come across people with autism without a Learning Disability. As we identify more people with autism and perhaps those with more subtle presentations. what does this mean about our conceptualisation of it? Do those with more significant problems struggle to find a voice? When we have limited resources how do we prioritise those most in need? These are some of the questions which I am trying to grapple with in the early stages of my work as a researcher.
At the same time, people with autism have become more politically organised and advocate passionately about their rights. The neurodiversity movement has led to some amazing role-models like Great Thunberg, whose determination to stop the climate crisis has inspired the world. It has forced clinicians to think carefully about difference, the language used to describe people and the ethics of some of the interventions used. Some have argued that autism should not be diagnosed at all as it is not a disorder but a difference. Yet the rates of diagnosis continue to increase.
Dorothy Bishop argues that there is an enormous amount of overlap between neurodevelopmental problems. She states that co-morbidity is the role rather than the exception and that the diagnosis you receive is likely to vary depending on the type of clinician you see and their specialism.
In Clinical Psychology, Lucy Johnstone and others are keen for us not to over medicalise mental health. We have moved away from diagnostic labels in mental health, although we still rely heavily on anti-depressant and other medications. The spirit of the age in psychology is formulation, the idea that you use a framework to help people to understand the different factors which have contributed to their difficulties. This may be things which have happened in the past, events which have occurred recently, things which keep it going and strengths. There is a great deal of variation in the formulation models we use as psychologists to understand people’s presenting problems. Perhaps similarly we need a new framework for neurodevelopmental difficulties?
As psychologists we have moved away from diagnosis in mental health, however some psychologists have remained involved in neurodevelopmental, typically autism and attention deficit hyperactivity. The waiting lists for assessments are growing. When one service tried to prioritise children and young people who were at risk of family or school breakdown they encountered resistance from the community. However, the budgets for health services are not increasing with the level of demand and commissioners face stark choices.
The challenge for clinical psychologists working in this area are numerous: meeting the high level of need with limited resources, striking a balance between describing complex needs, validating people’s perspectives. whilst not pathologising or stigmatising individuals who may not have a voice. In my clinical work, teaching and research, I hope to explore some of these issues and perspectives and contribute meaningfully to the debate.