Autism and Ageing

Autism is a lifelong developmental condition, and as awareness grows, so does our understanding of how it impacts people across their entire lives, including into older age. For many years, the focus of research and support has been on children and younger adults, but it is crucial to recognise the unique experiences, strengths, and challenges that come with being an autistic older person.

But does autism stay the same throughout a person's life? The core aspects of being autistic remain, but how they present can evolve with age and life experience. Proactive planning and understanding these changes are key to ensuring a fulfilling and well-supported later life.

How Autism Can Shape the Ageing Experience

The journey of an autistic person is one of constant adaptation. This lifelong experience can shape the ageing process in distinct ways.

• Evolution of Autistic Traits

  Some autistic traits may become more pronounced with age, while others may become less so. For example, a lifetime of developing coping strategies may mean an older autistic person has well-established ways of managing sensory sensitivities or social situations. Conversely, the cognitive and physical changes that come with ageing can sometimes reduce a person's capacity to manage, potentially making sensory overload or anxiety more challenging than it was in younger years.

• The Lifelong Impact of Coping

  Many autistic people spend their lives 'masking'-consciously or unconsciously hiding their autistic traits to fit in. This is an exhausting process that can have significant long-term consequences. The sustained effort of masking can contribute to chronic fatigue, increased anxiety, and burnout, which can impact physical and mental health in later life.

• The Strengths of Consistency

  On the other hand, strengths associated with autism can be a powerful support in older age. A preference for routine and predictability can provide a stable and reassuring structure to daily life, which is beneficial for well-being. Deeply held special interests can continue to be a source of immense joy, purpose, and engagement throughout a person's life, combating potential loneliness.

Common Concerns and Planning Ahead

Proactive planning is essential for addressing the potential challenges of ageing with autism. It allows for a person-centred approach where the individual's needs and preferences are at the heart of all decisions.

• Maintaining Independence

  A key concern for many ageing people is the ability to live independently. For autistic people, this often involves having robust support for daily living skills, such as managing finances, cooking, and household tasks. Future planning should involve identifying what support might be needed to maintain independence for as long as possible.

• Accessing Appropriate Healthcare

  Healthcare settings can be incredibly challenging for autistic people due to sensory overload, communication barriers, and disrupted routines. Hospitals are often noisy and brightly lit, which can cause extreme anxiety and distress. Communicating symptoms or pain can be difficult, especially when healthcare professionals use jargon or when the autistic person has trouble perceiving internal bodily sensations (interoception).

How to Plan for Medical Care

As you get older, you're likely to need increasing amounts of medical care, for one reason or another. Creating an Autism Hospital Passport is an excellent start (you can use the free Autism Hospital Passport creator from the Autism Info Center at passport.autisminfocenter.org). This is a document that contains vital information about you, your communication preferences, sensory needs, and what makes you anxious, to help medical staff understand how best to support you.

It is also a good idea to request 'reasonable adjustments' when you go for appointments, such as asking for the first appointment of the day to avoid busy waiting rooms, or to ask to be seated in a 'quiet room' while you wait, and asking for instructions and important information to be written down so you don't forget what was said.

Navigating Social Care

As needs change, some people may require social care, either at home or in a residential setting. It is vital that social care providers have a good understanding of autism. A lack of awareness from staff can lead to misunderstandings and inappropriate support. Consistency of care and support is particularly important, as autistic people often find comfort and security in familiar routines and staff.

When considering future care, look for providers who have specific training in autism. Ensure that any care plan is person-centred, developed in partnership with the autistic person and their family, and clearly outlines their needs, preferences, and communication style.

Future Support, Housing, and Finances

What will happen if you can no longer live in your current home? Planning for future housing is a major consideration. Options might include supported living, where you have your own tenancy with visiting support, or residential care for those with more complex needs.

Managing finances and benefits can be complex. Support from an agency that helps with personal budgets, or having a trusted advocate, can be crucial to ensure financial security and prevent exploitation.

Risk of Social Isolation

Older people, in general, are at a higher risk of social isolation, and this can be a particular concern for autistic people who may find social interaction difficult or have smaller social networks. This can negatively affect mental health and well-being.

Building and maintaining connections is key. This could be through online communities, which are often very accessible, or local groups based on special interests. These groups provide opportunities for social interaction in a comfortable and understanding environment.

A Future-Focused Approach

Ageing with autism brings a unique set of experiences, blending lifelong strengths with new challenges. The most powerful tools for navigating this journey are proactive planning and clear advocacy. By leveraging the stability of routines and the joy of special interests, well-being can be actively promoted.

It is essential for autistic people, their families, and service providers to work together to create a comprehensive plan for the future. This involves having open conversations about healthcare, housing, and financial support, and ensuring that the autistic person's voice is at the centre of every decision. Having a trusted advocate, whether a family member or a professional, can ensure your rights are upheld and your needs are met, especially if you become unable to express them yourself.

Ultimately, a positive experience of ageing as an autistic person hinges on having support systems that are respectful, understanding, and person-centred, allowing for a life of dignity, purpose, and contentment.