I recently read Virginia Bovell’s book, Danny’s People: a Memoir and Manifesto About Autism (Community Living, Autumn 2024), then talked to the author about the relationship between autism and learning disability.
Bovell is mother to Danny, who has a diagnosis of autism and severe learning disabilities, and is one of the founding parents of TreeHouse School and its umbrella charity Ambitious about Autism. She researches and speaks about autism and ethics, for which she received a doctorate in 2015.
Here, I share a little of our conversation.
Jan Walmsley: As a historian and an older person, I ask where people with autistic spectrum disorder (ASD) were in the past – people who struggled with social interaction but never had that label, like my brother-in-law who was diagnosed with bipolar disorder.
Virginia Bovell: Long before autism was recognised, people behaved in ways that might confer a diagnosis today; retrospective diagnosis has become almost commonplace, focusing on eccentric geniuses such as Einstein, Newton and Mozart as well as on so-called feral children. I’ve met contemporaries previously diagnosed with conditions
such as bipolar disorder who have been re-diagnosed as autistic.
JW: The statistics are interesting. The British Medical Association estimates that one in 100 children are diagnosed with ASD. The rate of new diagnoses are also interesting, like the well documented increase in childhood diagnosis and the relative rarity in diagnosis in people over 50. Does this indicate that its impact lessens with age or is there another reason?
VB: Improved awareness is leading to better early diagnosis, waiting lists notwithstanding. This means that the numbers of autistic children is rising regardless of prevalence in older adults. Professionals I encounter say they think there’s a real underlying increase in prevalence that a broadening of the diagnostic criteria over time cannot fully explain. My guess is that, as awareness grows, more people who would hitherto have been thought of as odd – or mentally ill – are now being diagnosed with autism. Also, many older neurodivergent people are now self-diagnosing but this is not reflected in the official statistics.
JW: What value does the label have for your son? His needs are specific and individual. For example, his intestinal problems, which you describe in the book, appear to be more significant than the label of autism for his quality of life. If every person who is labelled as autistic has different needs, might it work better to argue that everyone has specific needs and, if these are well met, people will benefit?
VB: His medical problems cause him to suffer in ways that autism and learning disability do not. But, even without his health problems, he would require a lot of support to thrive. A focus on an individual’s unique profile is necessary, but I believe Danny’s diagnostic labels are a useful starting point for needs assessment and support planning.
Professionals say they think there’s a real underlying increase in prevalence in children that a broadening of the diagnostic criteria cannot fully explain
JW: In the book, you discuss the danger that the interests of people like Danny who have profound and complex needs may be swamped by the rising tide of people diagnosed with autism or seeking an assessment. It appears the wait for assessments in children is growing, in part because of underfunding and also because of this rapid increase.
VB: Numbers grow, funding doesn’t keep up. Many autistic people are not eligible for any support unless in crisis, even though they can be more vulnerable and neglected than those who receive support on account of learning disability. Let us not generate competition between subgroups but instead look strategically at meeting so much need. The biggest improvement that could save money and boost quality of life would be a new training and career structure for the workforce: this would improve job satisfaction, staff retention and outcomes for everyone.
JW: Agreed – and this may be the subject for a future conversation.
