A significant majority of autistic people aged over 40 in the UK live without an official diagnosis, new research reveals.
Researchers from the Institute of Psychiatry, Psychology and Neuroscience (IoPPN) at King's College London reanalyzed UK healthcare data from 2018 and estimated that a staggering 91.45 per cent of autistic men and 79.48 per cent of autistic women aged 40 to 59 remain undiagnosed.
This points to an alarming overall underdiagnosis rate of 89.29 percent within this age group, a figure that reportedly increases even further in older demographic groups. The findings were published in the Annual Review of Developmental Psychology.
It found that 96.29 percent of men and 97.19 percent of women with autism over the age of 60 are believed to be undiagnosed, with an overall rate of 96.51 percent.
In contrast, the rate of undiagnosed autism among people aged 20 to 39 is estimated to be 52.54 percent, and 23.34 percent for those under 19 years of age.
Commenting on this research, Tim Nicholls, deputy director of policy, research and strategy at the National Autistic Society, said: “This research clearly shows what we already know and hear every day: there are large numbers of undiagnosed autistic adults and going through life without a diagnosis has a major impact on many aspects of their lives.
“Autism assessments can be the first step in understanding a person's needs and a diagnosis can be life-changing and, in some cases, life-saving.”
To better understand how autism can present later in life, Dr Lisa Williams, clinical psychologist and founder of The Autism Service, has shared seven subtle signs of autism that often go unnoticed in adults over 40…
1. Dependence on structure and predictability
“Older adults with autism who have been undiagnosed for much of their lives often fall into a set routine, which can make them feel more comfortable and in control,” Williams explains. “Reliance on this can become more noticeable with age, as unexpected changes and interruptions to this routine can trigger stress and anxiety.
“Signs of routine dependence may include extensive planning ahead, sticking to daily habits, and feeling unsettled by spontaneous or sudden changes in plans.”
2. Have specific and obsessive interests
“It is not uncommon for anyone with autism to develop deep interests in particular topics or hobbies, but this may especially be the case for older adults,” Williams says. “This may seem like a lifelong passion, but if it dominates their free time and tends to be something they talk about almost obsessively, it could be a sign that the person is somewhere on the autism spectrum.”
3. Sensory sensitivities
“Increased sensitivity to key sensory sources such as light, noise, smells and textures may persist into later years in autistic adults,” notes Williams. “Noticeable discomfort in crowded, noisy environments or with particular fabrics could indicate differences in sensory processing typical of autism.”
4. Struggles with change
“Change can be especially challenging for older adults who may have undiagnosed autism,” Williams notes. “Moving house, starting a new job, or adapting to new technology can trigger natural anxieties about a lack of predictability and familiarity. Constant signs of this can be a hallmark of autism.”
5. Difficulty understanding social rules
“Unwritten social norms, such as eye contact, small talk, respect for personal space, body language, and understanding subtle humor, to name just a few, can be more difficult for older adults with autism to understand,” Williams says. “People with autism often think differently than neurotypical people and may interpret things much more literally or have difficulty picking up on subtle social cues.
“This can result in feeling out of step in social settings or needing more time to process interactions, even with years of life experience.”
6. Struggles in romantic relationships
“Adults with autism may experience difficulty forming or maintaining romantic relationships,” Williams says. “This may include difficulty expressing or interpreting affection, discomfort with physical intimacy, or preferring independence to cohabitation.
“They often thrive in relationships with partners who understand their needs, communicate openly, and are willing to accommodate their preferred ways of connecting.”
7. Difficulties of integration in the workplace
“While many autistic adults excel in specific roles or tasks, they may struggle with aspects of workplace integration, such as adjusting to frequent changes, navigating office politics, or participating in group meetings that they find overwhelming,” Williams says.
“However, supportive managers who provide reasonable accommodations, such as clear communication or flexibility in work routines, can help them succeed. Without this understanding, autistic employees may face unnecessary stress, conflict, or even unfair disciplinary action.”
For more information about autism diagnosis and evaluations, visit the National Autism Society website at autism.org.uk.
