21 August 2024

Media Release

The National Ageing Research Institute (NARI), Australia’s leading independent, non-profit medical research centre dedicated to research into ageing and aged care, has opened up the conversation about neurodiversity as we age during their annual online public engagement program ‘Conversations on Ageing’ held on Wednesday 14th August 2024.

The theme for this year’s conversation, ‘Understanding, Embracing and Supporting Neurodiversity as we Age’, highlighted the urgent need to improve awareness, diagnosis and support for older people with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). It took the form of an online discussion with Professor Sandra Thom-Jones (Autistic author, artisan, academic and advocate) and Professor Mark Bellgrove (Cognitive neuroscientist responsible for leading the development of Australia's first NHMRC-approved clinical practice guideline for ADHD in 2022). With over 300 online registrations, the event was facilitated by new NARI Director, Professor Tracy Comans, who has been instrumental in informing and influencing implementation of the Royal Commission recommendations into aged care.

In opening the conversation, Professor Comans reinforced NARI’s commitment to promoting accurate information about ageing and older people, aiming to paint a realistic picture that is not overly negative but also not patronisingly positive. She explained that the topic of neurodiversity had been selected for this year’s discussion as it is thought to be an area that is under-recognised, under-researched and under-resourced in relation to adults and, in particular, older people.

Professor Bellgrove confirmed there is a current 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.”

Professor Thom-Jones identified a similar situation with ASD, or autism, which is another neurodevelopmental condition that involves persistent challenges with social communication, restricted interests and repetitive behaviours:

“We 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%.”

Despite this, Professor Thom-Jones described older adults with autism as an “ignored population” and reflected on her own lived experience in identifying significant challenges associated with neurodiversity and ageing:

“We know that the health care system is a huge issue for autistic people. 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.”

Professor Bellgrove also suggested there had been recent anecdotal reports regarding adverse effects of menopause on ADHD in older women, although he acknowledged that more data is required to understand the reasons behind this:

“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.”

Unfortunately, as Professor Bellgrove acknowledged, situations like this are compounded by a dearth of expert clinicians in the public health sector who diagnose and treat ADHD in adulthood.

Professor Thom-Jones elaborated on this, commenting that the lack of awareness and understanding regarding neurodiversity in older people also limits access to social services and supports due to discrimination and stigma:

“I think it's a really complex space to be in - being ageing and being autistic. These are two groups of people who experience a lot of discrimination and a lot of stigma. And when you put both of those aspects in one individual there's a lot of really negative things that people are going to be getting from the community, and a lot of things that are going to make it really difficult for them to connect, interact and feel welcome and included.”

Finally, both panellists agreed that the key to improving the health, wellbeing and quality of life of older people with neurodiversity is to involve them in much-needed research.

“I think the first thing we have to do is actually ask older Australians with ADHD what their experience is and what their priorities are, either in terms of their unmet needs but also in terms of research. But there are also definite needs in skilling 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 - whether it be nurses, occupational therapists, geriatricians or adult psychiatrists. This is critical in dispelling the myth that ADHD is just a childhood presentation and, instead, putting it on the radar for the older person in front of them.” (Professor Bellgrove)

“The experience of older autistic adults is absent across so many different service providers, individuals, community groups - it's just not there. 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)

NARI is keen to explore opportunities to partner with government agencies, advocacy groups and health and aged care organisations in conducting translational research to improve the health, wellbeing and quality of life of older people with autism, ADHD and other neurotypes – please contact Amy Parker (Strategic Projects and Communications Manager) via email: [email protected] to discuss further.

View the recording of the Conversation on Ageing: Understanding, embracing & supporting Neurodiversity as we age

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Media Contact: Amy Parker – Strategic Projects and Communications Manager, NARI: [email protected]

About Professor Sandra Thom-Jones:

Sandra Thom-Jones is an autistic author, artisan, academic and advocate. She is the author of Growing in to Autism (2022) and Autistics in Academia (2024), and a passionate champion for the inclusion of autistic people in all aspects of society. Sandra worked for more than two decades in the university sector as a researcher and senior leader, most recently as Pro Vice-Chancellor, Research Impact at Australian Catholic University (ACU). She now works as a consultant providing a range of services for autistic people – as well as professional development, research and consultancy services for education, employment and healthcare providers – through her website Autistic Professor. She is also an Honorary Professor at the University of Wollongong. Sandra has undertaken numerous research projects in partnership with the autistic community on the experiences of autistic people, and the knowledge and attitudes towards autism in the broader community; including research that won the Autism Cooperative Research Centres (CRC) 2019 and 2021 awards for research translation and 2022 award for inclusive research.

About Professor Mark Bellgrove:

Mark Bellgrove is Deputy Head of School (Research) and a Professor in Cognitive Neuroscience in the School of Psychological Sciences at Monash University. He is also Co-Chair of Monash Neuroscience, a university-wide collective of over 600 neuroscience researchers. At Monash, Mark leads a multidisciplinary team studying the biological basis of attention and cognitive control. His research achievements have been recognized with awards from NARSAD (USA), the Academy of Social Sciences in Australia and Biological Psychiatry Australia. In 2021 he was elected to Fellowship of the Academy of Social Sciences in Australia (FASSA) and was also recognised as Supervisor of the Year within the Faculty of Medicine, Nursing and Health Sciences at Monash University. In 2023 he was awarded the Vice Chancellor's prize for Research Engagement and Impact for the leading the development of Australia's first NHMRC-approved clinical practice guideline for ADHD. Mark also founded the Australian ADHD Professionals Association (AADPA), an interdisciplinary group devoted to advancing evidence-based diagnosis and treatment of ADHD in Australia.

About NARI:
The National Ageing Research Institute (NARI) is Australia’s leading independent, non-profit medical research centre dedicated to ageing, health and aged care research. With a strong focus on translational research – from healthy ageing through to end-of-life care across all services and settings – NARI makes a measurable difference to the lives of older people and those who care for them.

Founded in 1976, NARI is highly respected across the community, health, aged care and research sectors in Australia and internationally. Our work is underpinned by effective and meaningful collaboration, engagement and co-design with a range of key stakeholders to understand and respond to identified need.

We bring together the expertise of industry leaders, advocacy groups, academics, clinical experts, world-class educators and older people themselves to influence and shape the agenda; providing a bridge between academia, policy and practice by rapidly translating research into accessible evidence, knowledge, tools and resources to enable informed decision making by government, service providers and clinicians. This has positive health, wellbeing, social, cultural, environmental, and economic impacts for individuals and the community.

Current priorities for translational research at NARI include a focus on healthy ageing; prevention and management of medical conditions associated with advancing age; technological solutions to support older people to age well; diversity and inclusion; carer support and education; health and aged care systems evaluation; and evidence-informed model of care development. We are also committed to tackling growing societal issues such ageism and an increasing prevalence of elder abuse as well as challenges in recruiting and retaining a capable and resourced community, health and aged care workforce to meet the needs of Australia’s ageing population.

For more information, visit: www.nari.net.au