Older age – the Autistic life stage that politicians refuse to acknowledge

Today on the blog, Cos Michael, asks when the ageing Autistic population will be considered by policy makers and advocates for the needs and experiences of older Autistic people to shape better Neurodivergent-informed care in older age.

The All-Party Parliamentary Group on Autism held a closed meeting on May 21st to discuss the Government’s proposed welfare reforms and the impacts they will have on Autistic people.  

I read the minutes and I wondered about when, if ever, they will address the changing needs of Autistic people as we age?  

My concerns are primarily for older Autistic people, who manage independent lives, as we have no intellectual disability. According to Happé and Stewart (2024), this amounts to approximately 75% of us! We frequently fall outside of the statutory responsibility of learning disability services and, often, mental health budgets.  

“Successive Governments seem to regard Autistic adults as cardboard cutouts – once support is in place, we can be stuck in place and forgotten about.”

Yet we are Autistic and we have needs. Some cannot and have never been able to find employment. Some can no longer work, due to changes in the place of employment, changes in personal circumstances, the need to become carers for elderly parents, siblings, partners, and a multitude of other reasons.

We are affected by: 

• Changes to Personal Independence Payment (PIP). Existing health issues can change with age as well as the potential for the development of additional ageing-related physical and mental conditions 

• Social and wellbeing changes upon retirement, which is a transition stage routinely ignored 

• Support, or lack thereof, with the practical changes arising from bereavement 

• Increased social isolation of older Autistic people due to life changes, such as bereavement, retirement, children growing up and moving away

• Declining cognitive functions in people not being cared for by others 

• Changes to living arrangements, daily home carers and the need for supported living due to physical and mental health decline

It's not all about getting us into employment: Autistic people have the same health and social care needs as non-Autistic people and we change. Becoming old is a life stage.   

Successive Governments seem to regard Autistic adults as cardboard cutouts: once support is in place, we can be stuck in place and forgotten about. It's as though policy makers believe we are the same at 80 as we are at 30 years old. Are they? Are their needs the same as those of their parents and grandparents? 

Ideally, being older would be recognised within Autism policy as a life stage, just as infancy, childhood, adolescence and transition to adulthood are recognised as life stages. If older age was recognised in policy, it would trigger identifiable responsibilities at national and local levels. This might bring facilities for older Autistic people into line with those available to older neurotypical people. There are older people’s services available, but they are generic and make no allowances for Neurodivergent differences. 

If old age were included as a life stage in Autism policy, health, social care and older people’s services commissioners would be obliged to acknowledge our existence and commission appropriate services. 

“...as we have never even been mentioned in Autism policy, all I can say is that we are here – we have always been here. ”

The most useful change would be in staff training. Our quality of life would be vastly improved if physical health professionals, social care professionals (including needs assessors), benefits-related staff, mental health professionals and other carers and support workers were aware that Autistic people may have different communication styles and may need nuanced adjustments to the services they provide. Older Autistic people who enter residential care homes because of physical or cognitive decline might find their sensory needs and differences in social interaction were respected. At present, there is no responsibility for training care home staff in this area of disability. Can you imagine visible disabilities being ignored? There would be uproar. 

Home care is another area where Autistic people might be traumatised: perhaps by lack of continuity of carers, by well-intentioned carers touching them in a way that causes huge discomfort, by inadvertently causing distress through moving things around in their homes or by assuming a person needs to be pressured into social interaction when they actually require solitude. 

These are just starting points. Recognising the existence of elderly Autistic people would also impact the care provided for specific ageing related clinical conditions, such as diabetes, Parkinsons, continence issues, heart and stroke treatments and much more. 

When will the UK Government begin to acknowledge that older autistic people have equal rights under the law and make the necessary policy inclusions to trigger change?  

I would like to say that the inclusion of older Autistic people in Autism policy ought to improve, but as we have never even been mentioned in Autism policy, all I can say is that we are here – we have always been here. We have always been rendered invisible. And it’s deliberate – some of us have advocated for years and have been comprehensively ignored.