The elderly woman in the long-term care bed shrinks back as staff lean close to comfort her. She becomes increasingly confused and anxious. That’s because she’s autistic, but neither she nor the well-meaning health workers are aware.
This scenario is a growing concern in wards across the nation, as people with autism age into residential care.
Autism was first described in 1943 and only became more widely diagnosed in the 1970s. Which means many seniors who would today be diagnosed as autistic have been told they have a learning disability or other disorder. Many are unaware they’re on the spectrum.
Older adults with autistic spectrum disorder (ASD) may have been diagnosed with depression, anxiety, obsessive compulsive disorder or even schizophrenia, according to Dr. Yogesh Thakker, an Edmonton consultant psychiatrist whose focus is on adults with ASD.
“We’re seeing quite a few individuals in their 50s and 60s now receiving an autism diagnosis--especially those who might have normal intellectual functioning,” said Thakker.
Thakker says regarding eligibility for supports, people with ASD fall into two categories: those with intellectual disabilities and those without. Data shows 30 per cent of autistic individuals have intellectual disability, while 25 per cent are in the borderline IQ range and 45 per cent are average or above average.
“Individuals will qualify for support from Social Services, such as group homes, outreach support or day programs based on intellectual disability, whether autistic or not,” he said. “But if you are diagnosed with autism without intellectual disability, which is more than 50 per cent of individuals, that’s where there’s the biggest gap in services."
“Little is known about ASD in the elderly, as existing studies have mostly been done in children," said Suravi Patra of the All India Institute of Medical Sciences in a 2016 autism review. She notes adults and elderly with ASD report changes in symptom dimensions with advancing age.
People with autism are more likely to have immune, gastrointestinal and sleep disorders, weight management problems and even Parkinson's Disease. They also face challenges in self-control and memory, and difficulties with flexible thinking and social reciprocity. Though there is no consensus on whether symptoms improve or deteriorate with age, early indications show communication improves, often because adults on the spectrum have learned to adjust to a neurotypical world. Other symptoms remain or deteriorate, such as specific interests and repetitive behaviours.
As autistic adults move into residential care, their independence shrinks considerably, and hard-won coping strategies may no longer be available. They can no longer simply leave a distressing situation or turn down the radio volume, for example. And because so few elderly adults have an autism diagnosis, healthcare workers have little experience helping them navigate the pitfalls of old age.
A 2015 survey of U.S. healthcare professionals found most don’t have the training needed to care for adults with autism. Even in the U.K, which enacted the Autism Act over a decade ago, a 2018 multidisciplinary group identified priority topics that still need work. They included better transitions for autistic adults into residential care, autism training for care staff and providing autonomy and choice.
One of the key challenges for people with ASD are big life events or significant changes in their household, especially in older adults, if their parents are admitted to hospital, or they experience loss of spouse or friends," added Thakker. "That’s a significant change people with autism struggle to come to terms with, and this is without any support or limited support.”
It is crucial for healthcare workers to recognize autism in elders under their care, stresses Thakker. An autistic resident can have social responses opposite to what is considered normal, and it may be misunderstood as rude.
“Knowing is the first step towards doing something about it,” said Thakker. “Even small changes that might be small for me and you, such as a staff change, might be a big thing for somebody with autism.”
In their 2021 review of autism research, David Mason and Gavin Stewart of Kings College in London noted the paucity of studies on autism and ageing is starting to turn. Since 2012, they report, there’s been a 392 per cent increase in related research--almost double than for childhood.
And at a 2014 conference at the University of Alberta on strategies for autism in later life--hosted by the Institute for Continuing Care Education and Research-- participants were reminded, "the child with autism today is the senior in long term care in the future."
Autism Edmonton has a Grey and Great Senior Support Group. The next session is Tuesday, April 19 from 6 to 8 pm. Register at autismedmonton.org/grey-great-support-group-5.
Autism Calgary has resources for adults with autism. Find more at autismcalgary.com/information
The Adult Autism Diagnostic Clinic at the Glenrose Rehabilitation Hospital in Edmonton offers assessment to adults with ASD. Register at albertahealthservices.ca/findhealth/Service
Canada Autism’s 2017 report outlines measures for greater understanding, support and further research on ageing and autism. See autismcanada.org/wp-content/2017-ThinkTank_Final.pdf