It would be reassuring to know there is awareness of our needs and our wishes for the future. We will experience the same changes as in the general population. Our health is likely to decline, age onset conditions will develop and we are likely to lean more heavily on others for support.
We have looked to research to help us understand how our differences will affect our old age, but there is none. So I hope to contribute to building a bank of anecdotal evidence, which can be used to light the direction of travel for researchers and providers of services to autistic adults, as we grow older.
The middle aged with Asperger’s syndrome are an almost invisible minority within the general population. In the early era of autism awareness, the diagnosis for autism was narrowly focussed on those with intellectual disabilities. Children with Asperger’s syndrome, having the normal range of intellectual capabilities frequently went undiagnosed. They – we – grew up carrying various labels, from the relatively benign “quirky, nerdy” and “odd”, to the life altering, such as “schizophrenic”.
For those of us diagnosed in adulthood, it can open the door to information and with that, context. We can review our lives and measure them against our contemporaries, autistic or otherwise. Our experiences influence conscious preferences and how we make practical day to day decisions. But they also burn pathways into our memories, forging the more subtle facets of being human, such as outlook and philosophy.
Now we are in middle age. Most of us have learned to blend in, mask our differences and as we grow older, we live with the consequences. Adapting to survive can take its toll on health and mental equilibrium, but we manage.
So what is life actually like, as our lives move inexorably through middle age towards the day when we realise we have become old? How have our experiences affected the way we perceive the world and our place in it?
However we analyse our present, the future is less clear. We are the first generation of people approaching retirement, diagnosed with AS and entitled to services geared to our needs. Yet there has been little preparation and no guidance into how to provide for us.