Neurodiversity: the hidden condition
Seniors who experience the world differently demand understanding and action too.
A researcher’s personal experience
NARI researcher, Professor Sandra Thom-Jones, has neurodiverse conditions and lives the challenges associated with neurodiversity and ageing.
“We know that the health care system is a huge issue for autistic people,” she said. “When I have a medical symptom, I find it difficult to understand how I’m feeling and then to be able to explain that to a doctor.
“Then the doctor asks me questions in a way that’s not how I communicate as an autistic person. We don’t understand the question. We give the wrong answer. And so we’re sent away without a solution to our problem.”
“Putting us into an aged care home is an even bigger trauma than it is for anyone else because we’re being asked to change. Then I have to eat different food and sit in a room that’s a different colour, and have different furniture, and socialise in a way that I don’t feel comfortable.
“There’s just so much we really need to understand about that autistic experience.”
Neurodiversity and neurodivergence are nonmedical terms used to describe people who experience the world differently than others. And these conditions don’t disappear as you get older.
Neurodivergent baby boomers are often called a “lost generation” by researchers. They include those who had and maybe still have learning disabilities, emotional, or behavioural issues – conditions that fall under the categories:
Autism, or Autism Spectrum Conditions
ADHD: Attention Deficit Hyperactivity Disorder, or ADD: Attention Deficit Disorder
Dyscalculia
Dyslexia
Dyspraxia, or Developmental Coordination Disorder (DCD).
Previously, older people with these conditions were drugged and/or institutionalised. Studies are only just starting of older neurodivergent people and Australia is behind other countries.
That has led the National Australian Institute for Ageing (NARI) to begin a national conversation about neurodiverse conditions in aged populations.
Most older people who have neurodivergent traits know themselves, even if they have never been labelled, and are likely to have well-established routines and coping strategies.
However, raising public and industry awareness that older people, not just the young, live with these conditions can lead to research and improved aged care practice, including residential staff being more aware that someone’s established strategies could impact on their wellbeing in a solo or communal environment.
The theme for NARI’s 2024 conversation is “Understanding, embracing, and supporting neurodiversity as we age” and researchers say it highlights an urgent need to improve awareness, diagnosis, and support for older people with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD).
These are areas that NARI says are under-recognised, under-researched, and under-resourced when it comes to older people.
Professor Mark Bellgrove confirmed there was a lack of national and international research into ADHD, a neurodevelopmental condition characterised by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development, and older people:
“We have very little data regarding the precise prevalence of adults with ADHD. So, this is really a big issue for us in Australia because we’re having a dawning recognition that ADHD is not just an issue for kids – it’s a lifelong presentation.”
It is a similar situation with ASD, or autism, which is another neurodevelopmental condition that involves persistent challenges with social communication, restricted interests, and repetitive behaviours.
Professor Sandra Thom-Jones said people do not grow out of autism.
“There is no issue identifying what proportion of people who are autistic children will be autistic as adults. That’s easy. The answer is 100%.”
Professor Bellgrove cited recent anecdotal reports about the adverse effects of menopause on ADHD in older women.
“There are well-known interactions between dopamine (which is generally low in those with ADHD) and oestrogen (which decreases in women during menopause). But in what ways menopause might make ADHD medications less effective, or exacerbate symptoms, in older women is not known.
“It’s an area where we’re hopelessly underdone in terms of our research knowledge. And yet we have lots of women presenting as adults for diagnosis and treatment.”
The situation is made worse by a dearth of expert clinicians in the public health sector who diagnose and treat ADHD in adulthood.
The lack of public awareness and understanding about neurodiversity in older people also limits access to social services and supports due to discrimination and stigma.
NARI says the first step is to ask older Australians with ADHD what their experience is and what their priorities are, so to better skill the health and aged care workforce to bring awareness of ADHD and older adults to all the different professional groups that might intersect with them – nurses, occupational therapists, geriatricians, or adult psychiatrists.
“We know quite clearly that what constitutes a positive experience for an autistic child in school, or a positive experience for an autistic person in the workplace, is very different to a non-autistic person.
“Yet we make assumptions about what healthy ageing looks like for autistic people based on what we know healthy ageing looks like for non-autistic people. I think that's the huge gap,” Professor Thom-Jones said.
Related reading: NARI, Health Direct, The Elder
