Making it to older age against the odds
Content warning: this conversation starter includes reference to a recent death by suicide.
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Over the past couple of years, while living through a pandemic, many people around the UK have had to contend with a growing sense of loneliness. Reduced opportunities for social contact, prolonged periods of isolation and long-term medical shielding have all contributed to a dramatic shift in the way we spend our time and interact with others.
For autistic individuals, loneliness is something that we were already up to four times more likely to experience than the non-autistic population. There’s been a pervasive myth for some time now that autistic people don’t seek out or desire social connections but that’s not at all true: although many of us require and enjoy regular moments of solitude to self-regulate. In addition to factors like lower rates of employment than neurotypical peers and sensory barriers to being in the kinds of public spaces where social interactions take place, autistic people are also more likely to experience bullying, social exclusion and interpersonal victimisation. We also, in general, experience higher incidents of physical and mental health problems than non-autistic people which in turn often contribute to social isolation and feelings of loneliness.
While I was reading around the topic of loneliness for my PhD research, I came across the term ‘ethical loneliness’ (coined by Jill Stauffer), which seemed to describe something important. ‘Ethical loneliness’ relates to a feeling of alienation from the world: as a result of being abandoned by society. It’s the feelings experienced when a person is dehumanised in some way – either by other individuals or wider political structures – and then ignored when they try to speak out about it or seek help. It reminded me of something an older autistic participant with additional learning disabilities in my loneliness study had said. He’d finally built up the courage to call the number for a local depression helpline one day. He kept calling, but nobody ever answered the phone…
One evening recently, just before Christmas, time stopped still as I heard the deeply sad news that an autistic person from my social circle had died by suicide. We’d actually met in our twenties through a shared interest – making music – before either of us knew we were autistic, and often found ourselves playing the same festivals or gig nights, or sat around the same impromptu Brighton beach bonfire sing-alongs on balmy summer nights. We were weird planets orbiting the same weird sun, and recognised in each other a kind of kinship. Our interests and ways of presenting in the world were different, but we both had the same intensity of passion about the things we loved, we both appeared a bit odd or eccentric to those around us in the ways we dressed or behaved, and both laughed a lot: finding glee in small and invisible things. Although I hadn’t seen them for a few years after they moved away we’d kept in touch, sharing our experiences as late-diagnosed autistic people trying to make sense of ourselves in a sometimes confusing and unfriendly world. They were a neuro-sibling whose life mirrored my own in uncanny ways.
As an (autistic) autism researcher, while I was shocked by their passing, I wasn’t really surprised. All autistic people are at a significantly increased risk of dying younger from almost every cause of death (but this risk is increased further for those with additional learning disabilities). For autistic adults without co-occurring learning disabilities, the leading cause of early death was found to be suicide in one large Swedish population study which discovered we are 8 times more likely to die from suicide than the non-autistic population. In my own circle, an extraordinarily high number of the autistic people I know have experienced suicidal thoughts at some point. Unmet support needs, a higher likelihood of mental health problems, the pressures of ‘camouflaging’ or ‘masking’ to fit in, burnout from sensory overwhelm, loneliness and social isolation: all of these things contribute to the increased risk of death by suicide among autistic folk. These figures are appalling in their own right, but they also contribute to a further problem: that we know so little about what it means to be autistic and to live into older age.
For many autistic people, reaching older age represents a feat of survival in a world that can often feel hostile. Our autistic elders are the ones who have made it. The fact that older autistic people then go on to become so invisible, and their needs so overlooked feels especially unforgiveable. For people of all neurotypes, older age often brings life changes that can mean social isolation and loneliness is a greater risk: let’s not abandon them further. Let’s listen to what they have to say…
About the author:
Gemma Williams is an autistic researcher, currently working as an Associate with the NDTi and on an ESRC Postdoctoral Fellowship in Social Policy at the University of Brighton.
Gemma’s research interests include communication between autistic and non-autistic speakers, loneliness, social policy and autistic sensory perception.
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