Realities from Ageing
Where we are
Few of us would dare to admit that our physical maturity through the years entails any kind of excitement or fondness as part of our natural response. For autistic people in society though, the realities which ageing into adulthood can bring can feel overwhelming, and potentially traumatic, for individuals who struggled to make sense of the neurotypical world as a child.
Whether it comes in the guise of finding suitable employment, adapting to changes in our body and the loss of loved ones who care for you, there are some stark realities which the world is yet to fully understand about autism and adulthood. Even by the average life expectancy, autistic people are 2.5 times more likely to die earlier than those who are not (53.87 in contrast to 70.2). Suicide cases are also 9x more likely to affect those people who are just autistic. To continue shying away from the injustice only perpetuates the struggle for the 500,000 autistic adults in the UK and populations abroad.
The Way Forward
Fortunately, there is a path being developed to begin shaping the questions that we need for researchers and autistic people to work in collaboration to begin the evidence base of improving the lives of adults in the future. I was pleased to be among a wide range of international experts, among other autistic advocates, at Newcastle University (who manage the Adult Autism Spectrum Cohort (AASC) for Autistica’s summit to address the wide vacancy of knowledge we need to acquire. What became an immediate call to action to motivate our cause came from Autistic Consultant and Trainer, Cos Michael, who highlighted much of the hardship felt in the community, is caused by indifference in wanting to find solutions. From issues which directly link to co-occurring conditions in ageing, including mental health, Cos emphasised the need to delve into studies why sleep deprivation and harmful self-medication (as examples) were so prevalent.
A substantial part of conversations which spanned across the summit pinpointed to health practitioners, GPs in particular, could better meet the needs and help autistic individuals seek medical attention when we need it most. For mental health alone, progress updates from the AASC found 40% of respondents could not access the service they needed. Whether it may be What are the barriers for autistic people to visit the GP or How do we reduce premature deaths, the poorer health outcomes among autistic people are fundamental challenges to create interventions which improve clinical expertise and confidence for autistics to be supported where and when they need it. Notably, the US has led the way in creating a co-produced toolkit with autistic adults which begins to go some way to ensuring greater accessibility in the various complexities in navigating the system. Presented by one of the figureheads behind the toolkit, Christina Nicolaidis, she states that while research as a means to drive scientific knowledge, there must also be equal impact that positively changes the lives of autistic people, as this toolkit seeks to achieve.
As a young adult in my own case, I was curious to better understand the nature of relationships which are part of the human experience and how much the greater risk of isolation worsens overall wellbeing when this need is unmet as a person ages. A pertinent theme came within the context of sexuality also. In my own conversations with some parents recently, autistic adolescents will exhibit sexualised behaviour which can pose its own challenges, but serves to remind that (like disabled people) such concepts are often sensitive in the wider focus upon young children and issues there. Besides effective sex and relationships education, one delegate raised the matter of gender issues and the way in which autistics would feel about their own identity as people. There is a strong distinction to be made for men and women’s experiences in ageing over the years, not least in life expectancy rates, but also vulnerabilities and diagnostic inequalities.
As it is, there are more areas for further research and no clear answers to avenues that could be pursued further.
Over the second day of intensive discussions, research priorities were identified under the following categories:
· Personalised healthcare (biology)
· Social determinants of health
· Residential care
· Outcomes and measurement (Are existing measures of pain and function valid in autistic people?)
· Cardiovascular and gut deficiencies
· Sexual development
· Health checks
It’s time for research to be bold and stop sidestepping the hard challenges which bring hardship for autistic people. Make way for finding answers to complex questions.
This summit only marks the start of a new programme of research to be established and new opportunities for autistic people to be at the driving seat of leading the research that’s important to us. As Autistica’s James Cusack announced over on Twitter:
Georgina Warner, Research Manager for Autistica, who additionally had an important role in preparing the summit, shared her thoughts about the occasion remarking:
“Autistica are committed to hosting strategic workshops to accelerate under investigated autism research areas. The Ageing Summit was an excellent example of this approach. We were privileged to have such a great mix of autistic advocates, researchers, clinicians and clinical commissioners who worked tirelessly over the two days co-creating research ideas. We’re proud to come away from the meeting with a diverse range of research concepts, including a number of practical physical health interventions such as annual health checks for autistic adults.”
Cos Michael also shared her reflections from being involved, saying “The Summit gave the autism and research communities the chance to discuss how what’s needed from research to improve the health of 50% of the autistic population: autistic people over 40 years old. Fantastic!”
If you’d like to be part of opportunities like this in the future, why not #JoinDiscover, led by Autistica!