Ageing with Autism (if this is seen or experienced as a disability) | Provider Hub

IMPORTANT NOTE: This Toolkit for Ageing Well, does not cover everyone who is autistic or neurodiverse, as these do not always mean a person has/or sees this as a disability.

The information contained within the toolkit with regard to autism, is therefore aimed at people who are Autistic and see this as a form of disability.

Autism itself does not directly reduce life expectancy but health inequalities and lack of effective support can impact longevity. This data stresses the importance of tailored healthcare and social support to improve the quality of life and potentially the life expectancy of autistic individuals.

"AUTISM is a lifelong developmental disability which affects how people communicate and interact with the world. More than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK." (Source: National Autistic Society)

It is important to understand that autism is different for everyone, and whilst some may need significant support in their daily lives, others may only need intermittent support. Autism is lifelong and there is no cure: it should not be viewed as an illness or a disease. Autism is often referred to as a spectrum, which reflects the wide variation in challenges and strengths of each person.

Find out more about autism by watching this film narrated by Alan Gardner, the Autistic Gardener

Here are some common characteristics of people who are autistic:

People who are autistic might find it hard to communicate and interact with others, and they may interpret social cues differently.

As well as most autistic individuals being adults, the large ageing population means that there is a significant group of older autistic adults. If we estimate that at least 1% of the population is autistic, then in the UK alone 149,000 are currently aged over sixty.

In Essex, those diagnosed Autistic who are over the age of 65 is predicted to rise by around 25% over the next 15 years to 2040 to just under 4000 (Poppi dataset, 2024). However, the actual number may be higher, as not everyone is diagnosed.

Both ageing and autism are associated with difficulties in certain aspects of cognition.

Ageing for autistic people may suggest an increased risk than to those who are neurotypical. Alternatively, the effort required by autistic people to understand the neurotypical world may mean that they already have strategies in place which may help them cope with age-related changes.

They may be over- or under-sensitive to lights, sounds, tastes, or touch, which can affect their daily life.

Engaging in repetitive behaviours and having a strong preference for routines is common.

Autistic individuals can have any level of intelligence, from above average to intellectual challenges.

Many people with autism also have co-occurring conditions such as ADHD, dyslexia, anxiety, depression, or epilepsy.

The Challenges of Ageing with Autism

Ageing with Autism presents unique challenges that can impact a person’s quality of life. Here are some examples:

Older adults with ASD may face a higher risk of certain physical conditions such as osteoporosis, cancer, heart disease, arthritis, and cognitive disorders like dementia, including Alzheimer’s disease

Mental health issues, including anxiety and mood disorders, can be more pronounced. Many older adults with ASD may have been undergoing treatment for these issues without a formal diagnosis of autism.

Poor social skills and repetitive, restrictive behaviours can persist, which may become more noticeable as the individual ages.

Sensory differences can be affected by ageing, leading to increased anxiety and stress.

The effort required by autistic people to understand the neurotypical world may mean that they already have strategies in place which may help them cope with age-related changes.

Many older adults who were not diagnosed as children are now receiving, or seeking, a diagnosis. This late recognition can lead to a lack of support services that could have been beneficial if provided earlier.

It is important to note that with appropriate support, tailored to the individual’s needs, autistic people can live full and meaningful lives.

The life expectancy for autistic adults can vary widely depending on several factors, including the presence of co-occurring health conditions and access to healthcare and support services. Recent studies provide some insights:

Research from UCL in 2023 found that autistic men without a learning disability had an average estimated life expectancy of 74.6 years, and autistic women without a learning disability, around 76.8 years. For those diagnosed with autism and a learning disability, the estimated life expectancy was around 71.7 years for men and 69.6 years for women.

These figures suggest that while autistic individuals may have a lower life expectancy on average, many live well into old age, especially when they receive appropriate support.

Autism Support - from Summit Advocacy - Here you can find more information about the Autism Navigation Service which is managed by Summit Advocacy Service. This is a service that helps people over 18 years old with an autism diagnosis at any stage of the process. They also help young people aged 16 years and their families who may need advice and guidance.

How it can help:

They support people who may identify as neurodivergent to access an assessment of autism by providing advocacy and navigation. They help people feel informed about the diagnosis and process. 

If you are supporting someone who is autistic, remember that no two people are the same. Speak with them and/or observe how ageing may be having an effect and using the tools and information contained within this toolkit, together come up with a plan to make their transition to older age as stress free and enjoyable as possible.

Crib sheet - Implications of ageing for autistic people, where the latter is seen as a disability

Ageing can present unique challenges for individuals who are autistic.

Some of these implications are:

Older autistic adults are more likely to face both physical and mental health challenges compared to neurotypical individuals over 65.
Conditions associated with ageing, such as osteoporosis, cancer, heart disease, and arthritis, are more common in older adults with autism.

Coexisting mental health conditions, including anxiety, mood disorders, and difficulties with socialising, are prevalent.

Some symptoms of autism in older adults, mirror those seen in young children, including poor social skills and repetitive behaviours.
Many adults diagnosed later in life note that their symptoms were evident from a young age.

Adults who were not diagnosed as children often learn to mask their autism symptoms to fit in socially, leading to stress and potential health problems over time.

Establishing a safety net of support is beneficial for older autistic adults.
While the level of support varies, having access to therapy, mental health care, and housing services is crucial.

Research suggests that as autistic individuals age, the severity of autism traits may increase.
Social skills, communication, and flexible thinking (such as coping with change) may be affected.

In summary, ageing with autism requires tailored support, understanding, and awareness of both physical and mental health needs. Providing a supportive environment can enhance the quality of life for older autistic adults.