Over three decades ago I undertook two placements at one of the major psychiatric hospitals in Scotland. It was during one of them that I got to know George, or should I say that George started to allow me to ‘know’ him. George was the first person I had met who lived with Kanner’s or severe autism. Even the term severe autism is a dubious one often designated by diagnostic models as Level 3 Autism. George needed a great deal of support which his family could not provide, and he ended up in hospital simply because at the time there was no service available to support him.
George struggled as many with an autism spectrum disorder do with social and communication skills and did not use spoken language but instead used a mixture of sound and movement to communicate. He was highly sensitive to light and smell and it took several weeks to learn how to be able to communicate with him. For too many years those around him thought he was of ‘limited’ intelligence but through the dedicated skill of one or two professionals George had learnt to communicate well and with real insight and articulacy.
George taught me about his world through his action, behaviour and communication and sowed in me a life-long fascination for autism. He taught me to see in body gesture and finger flicking a reaching out to bridge our communication, he helped me understand what was meant when he rocked his body, slammed doors or hit himself. He helped me understand the inner frustrations and sensory overload which at time reduced him to acute physical pain. Over the weeks I began to understand that behind his ‘eloping’ and continual wandering there was often an acute incident of a gastrointestinal pain. George allowed me into his world or more accurately he helped me to open my eyes to what he was communicating to me.
Next week from 29th March to the 4th of April it is World Autism Awareness Week. Every time it comes to World Autism Week I remember George more than anyone else. I recall the world in which he lived his life.
If I am honest before I started to meet people like George I had thought of autism as being something which mainly impacted children – which might seem nonsensical today but was a not uncommon view in the 1970s and 1980s. Indeed autism was not included in major western disease classification until that period. But children with autism become adults and then older adults living their lives with autism. On a practical level many of those who are now in older age were never formally diagnosed and have often lived their lives with a minimum or no level of support – the support which would have helped them to achieve a much better quality of life. For not a few older people with autism there have been inaccurate diagnoses or wrong attributions to mental health problems or dementia, which can lead to inappropriate treatment. For too many there is a casual presumption that their behaviour is simply eccentric or the sign of ‘old age’!
In my current role in the care sector the experience of older adults with autism is one which causes me very real concern. Relatively speaking we have so little research and understanding of what the impacts of a lifelong condition like autism are on people who are old and very old. However that which does exist evidences that many older people with autism are socially isolated and have difficulties sustaining employment and relationships. All this is exacerbated with the knowledge that many individuals continue to live with parental and family carers, but inevitably those carers become old themselves and die. The risks of a sudden breakdown when there has been no planning for transition and change are very real, and sadly too many people with autism in late adulthood endure severe poverty and become homeless. I know from speaking to frontline care staff in the community just how many people fall through the gaps in our current disintegrated health and social care system.
Research by Prof Rebecca Charlton from London has shown that age and severity of autism are linked, and that ‘as age increased so did the severity of autism symptoms in social situations, communication and flexible thinking (such as coping with change or generating new ideas or solutions).’ They also found that older people with autism were more likely than younger people to extract rules from situations or prefer structure.
The pandemic has accentuated what for many older people with autism was already a hard and dislocated existence. It has led to very real challenges for those organisations and charities which support people, and it has limited the appropriate access to clinical and medical interventions. It has prevented or halted some positive developments which were focussed on training frontline health and care staff to get better at recognising and responding to late-age autism.
As we seek to recover we must get better at understanding that autism is indeed a lifelong condition, and we must as a wider society become more robust at wrapping appropriate support around people who require intervention in order for them to be as autonomous and independent as they want. Rebecca Charlton has stated that at present we do not even know whether people with autism age in the same way as people without autism in part because of the relative age of our awareness of the condition. People with autism may develop robust coping mechanisms from which we can learn but equally transitions of age may result in sharp deterioration and decline. There is so much we do not know.
In my many days with George all those years ago he taught me that he had a way of seeing the world and being in that world which was foreign to my understanding and knowledge. He taught me that his world was one of value and worth, of depth and mystery, of insight and knowledge. Such sentiments are beautifully expressed by Penelope who shared her poem with the National Autistic Society. I hope as we move forward not just in the next focussed week but thereafter we can as a whole community become more skilled at and dedicated to supporting those older people who live with autism remain citizens of their and our world.
Of another world
I am of another world –
A visitor, a stranger to your shores,
An immigrant born in your heartland.
I am other,
A legal alien in native skin,
At your mercy.
So treat me gently:
Your customs are strange to me,
Although I was raised within them,
And I fear your people,
Accept my behaviours,
As I accept yours,
And understand that I am different,
I shall come to love your world;
And it shall become my home from home;
But at heart,
I am always other,
I am of another world.