A new study from King’s College London has found that the majority of people aged over 40 with autism are undiagnosed, and are at risk of a range of mental and physical health problems
A pioneering new study from King’s College London has revealed that middle-aged and older autistic adults are grappling with undiagnosed autism, alongside a range of mental and physical health issues. The research also highlighted shocking gaps in autism studies focusing on older people with the condition.
The investigation, published in the Annual Review of Developmental Psychology, found that approximately 23% of under-19s with autism are believed to remain undiagnosed. In stark contrast, 96% of autistic people over 60 have never received a diagnosis.
This older age group showed the highest rates of missed diagnoses, with 96.29% of autistic men and 97.19% of autistic women over 60 failing to receive a proper diagnosis.
The 40 to 59 age bracket wasn’t far behind, where 91.45% of autistic men and 79.48% of autistic women remained undiagnosed. In the 20 to 39 age range, diagnostic rates improved significantly, leaving just 53.17% of autistic men and 49.27% of autistic women without a diagnosis.
The study concluded that overall, 89% of autistic adults over 40 years old are undiagnosed.
Dr Gavin Stewart, British Academy Postdoctoral Research Fellow at the IoPPN and principal author of the review, said: “These very high underdiagnosis estimates suggest that many autistic adults will have never been recognised as being autistic, and will have not been offered the right support. This could make them more susceptible to age-related problems, for example being socially isolated and having poorer health.
“The high rates of underdiagnosis also mean that much of our research has systematically overlooked a large proportion of the autistic population, potentially skewing our understanding of how autistic people age, and leaving critical gaps in policy and services.”
The study found that middle-aged and elderly autistic people suffer from significantly higher levels of virtually every physical and mental health condition when compared to non-autistic adults. This encompasses immune illnesses, heart disease, neurological conditions, digestive problems, anxiety and depression, as well as ailments associated with getting older, such as Parkinson’s disease, cognitive impairments, osteoporosis and arthritis.
Elderly adults showing high autistic traits were also six times more likely to experience suicidal thoughts, self-harm ideation and actual self-harm. The findings further revealed these adults were four times more likely to be diagnosed with early onset dementia compared to non-autistic individuals.
Autistic adults faced poorer outcomes regarding employment before retirement, relationships and overall quality of life due to significant levels of social isolation.
The review also found they came up against barriers when trying to access healthcare support because of autistic traits including communication differences, sensory sensitivities, uncertainty about service access and insufficient understanding of autism in adulthood amongst healthcare professionals.
Professor Francesca Happé, Professor of Cognitive Neuroscience at the IoPPN and co-author of the review, said: “Understanding the needs of autistic people as they age is a pressing global public health concern. As autistic people age, the nature of the challenges they face changes. We must adopt a lifespan approach that funds long-term research, integrates tailored healthcare, and expands social supports so that ageing autistic people can live happy and healthy lives.”
The researchers urged for additional studies and investigations to gain better insight into the experiences of autistic individuals in midlife and older age. This could help enhance outcomes for autistic people as they get older.
If you suspect you’re showing signs of autism, the NHS advises reaching out to a healthcare professional like a GP and requesting a referral for an autism assessment. This is carried out by experts in autism who may inquire about any difficulties you’re experiencing, consult with people who know you, or observe your interactions with others.
Getting a diagnosis can shed light on why you see and experience the world differently from others, help you access support and potentially even financial benefits. It can also aid in explaining to others why your perception and experiences differ.