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.

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

  1. As a person with HFA I can comment that the aforementioned questions… Well, lets be honest here, they suck. I know this because as a 21 year old I’ve only just begun wrapping my life (with tremendous difficulty) around campus living.

    The noise, the people, the lack of control; it’s claustrophobic. I can’t even fathom how I’m to cope once I’ve lost the very independence and youth that is allowing me the flexibility, skills and perseverance to carry on here right now.

    Certainly something now on my radar for retirement. Thank you for the great post 🙂

    – Chase

    1. Thank you for your comments Chase. I agree with you, the thought of having to one day relinquish my independence and cohabit with others on mass is a scary one. The issues yet to be addressed for adults with HFA are huge. It seems our politicians and policy makers are not even trying to put anything in place to acknowledge this. Hopefully in talking about it now we can encourage them to act. Cheers Seventh

  2. This is really interesting. My DH is now 50. In the last few years he has become noticably more special needs. he is less tolerant, less adaptable, more set in his ways. We have talked with concern about what this means for the future and how we will adapt. In particular I am worried about the role that he will have in the family. Increasingly we are working around him/ managing him/ making decisions for him. His mental health is also deteriorating. I cannot imagine him ever being able to cope in a home. He’s struggling to cope with the work environment, he’d never cope in a full time institution.

    1. I agree with you and it is slowly becoming more and more of a concern for both adults with autism and their families. Our society is going to have to change its concept of what is considered appropriate aged care for those on the spectrum. Put simply, no amount of herding people together, aged or otherwise, will ever be an appropriate response for those with sensory or neurological differences. Autism simply does not work that way. Fortunately we now have a wave of ASD adults in our society who are willing and able to speak their minds and what they have to say on the issue of age care needs to be listened too and acted on.

    1. Thank you so much for your comment Lynn. I agree with you. so many more questions need to be asked and there is just so much scope for research to be done in this area and yet still it remains an ignored and often over looked aspect in the lives of those with Autism.

  3. I worked in an aged care place and was distressed on several occasions, needing to remove myself from situations where undiagnosed aspies were treated poorly when it was clear that a time out was necessary but how could a lowly catering assistant tell a trained nurse how to manage a ‘dementia’ patient.

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