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Brookdale Care Autism Articles
What about old age?
Posted: 2009-10-23 | Author: Autism Articles
As the Autism Bill becomes law, 81-year-old Michael Baron – the proud father of a 51-year-old autistic son – reflects on what has changed (and what hasn’t) since he and a small group of other parents of autistic children founded the National Autistic Society nearly 50 years ago.
In the winter of 1961, twelve parents met in a North London drawing room. If there was one thing they had in common, it was they each had a young son, no older than 5, who had recently been diagnosed as ‘psychotic’. They knew something had to be done to secure a hope of a good life for their sons; if not a cure, then at the very least a change from their tormented state to a life that was viable and happy.
The campaigning group they started is known today as the National Autistic Society, the recognised leader in its field. The same children grew into teenagers, then into adults and are now middle aged. If they had not been disabled by autism, they’d currently be looking forward to retirement, and in reflective moments, wondering how they’d fare in old age.
But no, it is not like that. The parents still have the worries of 1961, but for kids grown old and part of that 1% of the population (500,000 people) with an autistic spectrum disorder – of whom it is estimated 55% have an intellectual or learning disability – it’s serious.
Autistic adults become aged autistic adults, in good health and growing older along with the rest of us They face the same problems as all older people, only more so. And what goes for this disorder or condition goes for adults with other intellectual disabilities. For once Donald Rumsfeld was spot-on – what may happen to several hundred thousand men and women is an “unknown unknown”.
Newspaper coverage over recent months has focused on social care – the Green Paper, local authority failures, personal tragedies, mental health issues – but old age and learning disability has not had much of a press and the aged with autism none at all. So I am choosing this column to say this is real, there are many older people with autism out there and there will be more. Some of the issues are set out in this summary from Dr Elizabeta Mukaetova-Ladinska from the University of Newcastle;
“The ageing research has rapidly progressed our knowledge about how we age in general, how to prevent the culprits of old age, and how to fight them. However, with the exception of Down syndrome, we know very little about the aging of people with learning disability, especially those with autism spectrum disorders (ASD).
“The prevalence rates are very similar to those reported for Down syndrome. And yet, we know a lot about the adult and elderly Down syndrome individuals, that improvements in their healthcare have led to prolonging their lifespan, which led to further discoveries about the aetiology of Alzheimer's disease, novel instruments to detect dementia and implementation of novel treatments for this.
“On the other hand, our understanding about the adult and elderly ASD individuals comes from a limited number of case reports, and we think about them only when a problem arises - medical, legal, social, environmental... Only then are we faced with our limited knowledge about understanding these needs, and wonder whether there is anyone out there to help us, advise us, or share that experience.
“However, the young parents of the newly diagnosed child are nowadays also thinking about the future, and openly have started enquiring 'what would be the future for my child? what would happen to him/her once I am not around'. Old Age Psychiatry services also see a number of bereaved parents, grieving for their adult children, being profoundly affected and tormented about the future. And yet, there are no answers to provide, with the great unknowns of silence overtaking the conversation.
“The latest estimates are that autistic adults survive and age along with the rest of us, and have the same needs as the rest of the ageing population. We still do not know whether and how ASD people with special needs age: whether the symptoms intensify, diminish... Are there enough adequately trained staff and facilities for those continuing special needs? Does the delayed learning curve associated with ASD continue with age, and thus real opportunities for the pleasure of achievement, however slight? In one sense, people with autism never 'retire' from the challenge to make sense of the world. They will need support services, continuing education in what works best for each individual, say music, painting or handicrafts, coupled with health and social care, and aspiration to a meaningful life with respect and dignity. Just like any other elderly person.”
So, the National Autistic Society, Autism Speaks, the European NGO “AGE”, Autism Europe and Mencap are supporting the first meeting of practitioners in old age psychiatry and care services in the world to look at these and other issues at the University of Newcastle later this month.
It’s a long trail since 1961. The parents of 49 years ago could not have looked that far forward. The land of their dreams was cure and recovery, or at least improvement so dramatic that their children would not be as dependent in the distant future as then. The dream was not fulfilled, although huge progress has been made.
But there are people with autism across the globe, not just in North London. That’s why at our conference we hope to find some answers, certainly identify likely needs and services, and the resources required.
If 1961 was about marking out the foundations, now we are up on the roof and examining its timbers for the first time. It’s leaking and unfinished. We have to fix it.
Michael Baron, MBE, Chair NAS 1962-67, Parent