Despite the changes over the course of Lionel’s lifetime – the improvements in diagnosis, the special schools, the holiday clubs, the support for siblings, the designated employment schemes for autistic people, the housing complexes, the relationship: training – despite all this good stuff, end-of-life care for the autistic population is still almost completely overlooked.
In the public imagination, autism is a Peter Pan condition affecting those who remain children for ever, rather than being understood as something that is lifelong and will affect how a 70-year-old man responds to a diagnosis of leukaemia.
Little attention to older age
Even amongst academics, there’s shockingly little research on this topic, despite there being tens of thousands of academic papers covering different aspects of autism.
And there’s also a huge literature on end-of-life care. But there’s only one paper across all these tens of thousands that has looked at how end-of-life care should be adapted to best meet the needs of autistic patients.
This groundbreaking study from the US focused on helping autistic people to write their living wills so that they have a voice in determining how their end-of-life care is managed.
The study authors took a standard template for living wills and replaced the open-ended questions (e.g. What matters most to you?) with concrete options that included aspects of care that might not be so relevant to neurotypical patients, such as being able to maintain one’s routines or having access to items that one finds comforting.
This is an important step forward, but it’s just a tiny beginning. Enabling autistic people to have a good death extends far beyond helping them with living wills, important though that is.
Responses to care
Lionel’s autism impacted on so many aspects of his care, including how he responded to touch, pain, unfamiliar clinicians visiting his bedside, understanding the information he was given and waiting for procedures.
What became obvious as we supported him through his illness was that the needs of autistic people for continuity, calm, quiet and predictability pull in one direction, while the demands of treating a disease like leukaemia pull in another.
Autistic patients have an equal right to receive the best treatment for cancer available.
But access to treatment isn’t the end of the story; we need to spend much more time thinking about how we can make the experience of receiving these treatments less aversive for neurodivergent patients.
We knew from Mum’s funeral that, while she and Dad were buried next to each other, there was no space on either side of their graves. If Lionel was buried in the same cemetery as Mum
and Dad, he wouldn’t be anywhere near them.
Needs for continuity, calm, quiet and predictability pull in one direction, while the demands of treating a disease like leukaemia pull in another
Liz [my sister] and I couldn’t bear to think of Lionel resting for all eternity on his own, next to complete strangers. We opted, instead, for cremation.
While Mum left no specific instructions, sometimes, when feeling particularly maudlin, she’d remark to Liz and me that nobody would come to Lionel’s funeral beyond the two of us and a couple of cousins.
She couldn’t have been more wrong. The large hall in the crematorium contained so many people that some were left standing at the back.
There must have been a hundred people there including: staff from the lunch clubs he attended; the Reserve Power [advocacy organisation] advocates, together with some of their other clients; residents from the sheltered housing complex where he lived; colleagues from places where he had worked over the previous 30 years; staff from the Maudsley Hospital who had supported him for decades; family members; my friends and Liz’s friends.
We even received a condolence card, delivered by hand to Lionel’s block of flats from the high-street branch of Tesco where he went to get his breakfast every morning.
