Aging and Autism – Insights from the Perspectives of Adults with High Functioning Autism/Asperger Syndrome

Art by Maria Zeldis
Art by Maria Zeldis

Over a year ago I had the privilege of being part of a research team exploring the experiences of adults with High Functioning Autism/Asperger’s Syndrome, within our community. Whilst most of the data generated in the early stages of the research was  considered comparatively raw, I never the less, picked up on some of the less anticipated and therefore more qualitatively unique themes that emerged from within the data.

One of those themes concerned the prospects of aging  for those with High Functioning Autism.

I nominate this as a unique theme because it may very well represent the first time that any research project has stumbled upon the issue of aging as  derived specifically from the perspectives of adults with high functioning autism themselves.

As an Autism parent I am well versed in the realm of potential fears  that we hold for our children’s care as they enter into adulthood.

The ever-present concern of what ‘will happen in the future’  forms not only a salient question for parent carers, but  is also, according to the words of many with High Functioning Autism,  increasingly forming an even more salient and potentially frightening question  for those with high functioning autism themselves.

‘What will happen to me when I can no longer remain independent within my own home?’

The level of concern that adults with high functioning autism express when discussing the issue of their own aging creates  a disturbing picture of  just what the reality of aged care may well represent for them.

A picture that from my perspective, demands that a clearer understanding of how adults with high functioning autism relate to the current structure of the aged care system and its  facilities, be obtained and worked upon as a matter of policy.

For example, could an adult with high functioning autism, who has been independent prior to old age, cope with having to adapt to the routine of a nursing or aged care home?

Would they cope with being told not only when to eat but what to eat?

Would they deal well with a constant intrusion on their privacy by well-meaning staff?

Many of the adults spoken to described the current version of aged care on offer to them as a ‘nightmare’ of epic proportions.

This descriptor was especially strong among those whose ability to lead  an independent life had been premised largely on their ability to remove themselves from the presence of others in order to eliminate stress when necessary.

To me such descriptions pose some serious questions around aging and autism that need to be addressed. For example :

What is on offer for adults with High Functioning  Autism who have extreme sensory sensitivities to noise and/or the presence of others?

What would happen in the event of a meltdown in such an environment?

Are aged care facilities really geared up for handling the multiple sensory issues and sensitivities that adults with High Functioning Autism can experience?

Research is increasingly showing that when it comes to the concerns of those with High Functioning Autism, we are no longer just  talking about the concerns of a small group of people who crave solitude.

Rather, research is beginning to uncover  the legitimate concerns of an increasingly growing number of adults who not only do not want to be placed in aged care facilities, but who doubt their very ability to survive in them.

These are people whose very quality of life can sometimes depend on their capacity to remove themselves from the presence of others. Their concerns are real and they need to be addressed.

Is this something any of you have thought about?

Have you read any articles that tackle the issue of aging and autism?

If so I’d be extremely interested in hearing more about your views on aging.

Thank you for taking the time to  read this post.