Change that leads to better lives

Autistic Elders: Wisdom and Society

In a world taught to think of autistic people as male children & adolescents, allegedly destined for a lifetime as costly burdens on parents and society, we have arguably lost sight of the majority of autistic people. Recent research shows how many autistic adults are likely to be older, undiagnosed, undiscovered, and almost entirely unexplored in research. What wisdom and contributions do we miss from our older autistic population?

Autistic Elders Wisdom and Society 01

A new paper by Mason and team (2022) shows that almost no research has been done on older autistic individuals. Although some 33,000 research papers focus on children, fewer than 175 are about older autistic people.

The Royal College of Psychiatrists in their 2020 report on autistic lives write that, “It is recognised now that most autistic people are adult, do not have an intellectual disability and are likely to be undiagnosed”. Almost everything we think we know about autism may be based on very incomplete information, it seems.

So, what do we mean when we say that autistic people are some lifelong burden? How can we know what autistic lives are like, what we contribute to society, or what our needs are, when almost no research has been done on older autistic people?

I’m not keen on a ‘deficit model’ of autism. There is good research showing how awful it is to self esteem and quality of life, to live as a long list of ‘deficits’. (Botha, Dibb & Frost, 2020) Especially when the newer research points so strongly to autistic social skills being different rather than deficient, and to autistic strengths aplenty.

I work amongst many hundreds of autistic specialists, academics, teachers, supermarket workers, factory workers, accountants, solicitors, surveyors, nurses, doctors, lawyers, librarians, mechanics, managers, artists, actors, poets, writers…the lists are endless. So many only received a diagnosis or an affirmation of being autistic in their adult years. I also work amongst many hundreds of autistic people who are retired, who are parents, who are grandparents, who are volunteers for charity, community and faith projects. Often, they are combining several of these roles.

Yes, like me, they may have spent early life without a good command of spoken language.
Yes, like me, they may have areas that need support, in everyday life – a support structure that takes into account varying health, tiredness and all the other factors that affect every human being.

Yes, there are some whose current support needs are high, and who deserve that vital quality of care, & the autonomy, enabling of communication and provision of caring teams so that they can truly thrive. Every one of them is a person of full worth.

But, goodness me, how did we ever allow publication of materials suggesting autism is solely a burden on society for life, at some great cost of a £million a child or some such thing?

How did we erase older autistic people from diagnosis, from research, from society’s comprehension?

How did we forget all that the older autistic population often bring to society, whether it is honesty, integrity, passionate social justice-seeking, friendship and companionship, or specific skills, deep caring & creativity?

How did we force tens of thousands of older autistic people into hiding, in workplaces, in communities, terrified that any disclosure of diagnosis or identity will mean removal from their post?

How did we create a narrative around autism that was so far distant from reality that so many tens of thousands go without realising they are autistic, decade after decade?

The ‘deficit narrative’ forces each and every one of us to live only as an incompetent semi-human, powerless and voiceless in society. At best, perhaps, as a walking zoo-exhibit or an example of things-to-be-fixed.

I wish for a world where we move away from the ‘deficit narratives’ that bring so many to their knees, forcing older autistic people to live as ‘asylum inmates’ and as alleged ‘burdens’. I would like us to be able to consider the endless numbers in our population who have given a lifetime of love, caring, creativity or service to our world and our communities, unacknowledged, unrewarded. There are so many older autistic individuals whose deep expertise, honesty and integrity have served our Professions for decades, and those who are in every way a blessing to us as neighbours, friends and family members.

In autistic societies, we often refer to our older autistic members as Autistic Elders. We look to them for wisdom. We search them out to learn of our history, so often entirely erased other than as a passing mention in a list of acclaimed academics who contributed to the deficit narrative. We seek them out for many of our greatest contributions to academia, to art and poetry, music, literature and faith. We go to them for courage, in bleak times. For hope, when life seems too tough. For caring, when living in a world that too often only cares for us if we can demonstrate sufficient brokenness.

After all, it is in love & community, in belonging & thriving, that we find ourselves whole and fulfilled. That’s a future worth striving for, and our older autistic people are a vital part of it.

About the author:

Ann Memmott is an autistic autism adviser & Associate to NDTi. In her fourth year of Post Graduate academic studies, Ann undertakes national and international advisory & training work for a wide variety of clients, including the NHS. Ann is a carer, and as an older autistic person, passionate about giving voice to older autistic individuals of all kinds.

Gemma Williams

Hi Chris, I know your reposnse was directed toward Ann, but just wanted to pop in to say, from the perspective of someone a bit younger in my late thirties trying to navigate working life, I'd absolutely find that kind of wisdom and guidance useful. Sustaining a job is exhausting and burnout(s) seem inevitable. I look ahead to autistic people who've gone before me and there are a growing number of older voices but not so many. Having representation and wisdom from later years will be so beneficial to the next generation of young autistic people coming through too, I think.

Chris JarrellGemma Williams

Hi Gemma, That's very interesting and reassuring to read. As we get older, i think we do doubt the relevance of what we have experienced as the world appears to change. So it's supportive to read your comments, as well feeling sad that you find sustaining a job exhausting and thinking that some sort of burnout is inevitable. A couple of books I'm looking at at the moment you may find useful ( I wish I had read them many years ago): Successful to Burnout by Karletta Abianac (an autistic author), and Building Resilience for Success by Cary Cooper et al. The latter does not address neurodiversity, but seems to provide a view of the work landscape that us neurodiverse folk might be able to adapt to our needs. Take good care of yourself, and thankyou.

Chris Jarrell

Dear Ann, I am one of those older autistic professionals that you write about, a retired social work lecturer and counsellor with a very late diagnosis of ASD. My transition from work to retirement was very traumatic as symptoms of depression and anxiety became more severe over a number of years as, at the same time, I sought help from my managers, health care professionals and occupational health. None of us knew I was autistic. Had we have known, would things have been easier for all concerned? I inherited a deficit model of autism through personal experience and lack of post diagnostic support, and I am still working through feelings about my burnout and also working on rebuilding my life as an autistic elder, a granddad and a writer. I would like to be able to share my hard won wisdom about about how autistic and professional burnout can combine to end professional careers in such distressing ways. Is this wisdom relevant to younger generations with a more strengths based approach to neurodiversity? I certainly think that organisations, managers, health care professionals and occupational health workers could benefit from being made more aware of this. I have plans (and an opportunity) to write about this from my own personal perspective, and I'm looking for opportunities to talk with other autistic elders with similar experiences. I have an idea for a working title of 'Autistic elders looking back on experiences of autistic and professional burnout.' I'd be interested to hear your views on this, and maybe start a NDTi conversation if thought appropriate.. best wishes, Chris

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Paul Gutherson
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Email: paul.gutherson@ndti.org.uk

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