The first generation of people diagnosed with autism in childhood are now reaching middle age, and mature adults are being diagnosed for the first time.
We all experience mental, physical or emotional changes as we get older and this is true of people with autism too. As people with autism age and their minds and bodies change, it is important for them and the professionals who work with them to understand the process of ageing. Ageing people need to be able to talk about their health. If professionals learn as much as they can about the person they support, they are more likely to spot changes in behaviour or mannerisms which may signal that the person with autism is having problems.
To understand more about the challenges people with autism face in older age, you can read the reports from our Getting On: Growing Older with Autism campaign from 2013.
Staying active as you get older
As we get older, it is more important than ever to look after ourselves. Keeping active is one of the best ways of improving our physical and mental well-being. This information will be helpful to those who are not very active at the moment or are looking for ways of doing more. It’s never too late to start making a change.
Being active in later life has many benefits for older adults with autism. Everyone with autism can:
If you are someone who supports a person with autism, physical activity will also make a difference to your quality of life as well. The benefits are there for everyone.
For more information please see “A Practical Guide to Healthy Ageing”
Health conditions and ageing
When a person has autism and any other mental or physical health condition, they are said to have a co-existing condition i.e. depression, epilepsy, OCD (Obsessive Compulsive Disorder) etc. As the mind and body undergo the ageing process, co-existing conditions can change. New conditions may develop, some of which may be related to ageing such as dementia, arthritis and osteoporosis etc. Carers or family members who know the person well should be alert to any changes and the possible reasons for them. This may include looking at changes in physical health, such as weight, eyesight, hearing, mobility and breathing. Changes in mood or behaviour may also signal and underlying problem.
However, it is important not to make any assumptions about physical or cognitive decline changes on the basis of age alone and to have an open mind about possible causes and reasons.
Any changes noticed should always be discussed with a GP or other health professional.
Support and Aids
As people with autism get older, they are likely to need more support, which could be through the help of carers or aids that can make daily tasks easier. There are many aids available now that can help with hearing, walking, sitting, turning taps on and off, reminding people to take medications and many more.
Some people are starting to use assistive technology to retain their independence and promote their dignity, including apps on tablets and iPads. Not all these items will be specific to older adults with autism but a lot of them can be adapted or used in a more autism specific way.
When a person’s abilities start to decline, it is advisable to seek advice from a physiotherapist or occupational therapist to make sure that the correct equipment to meet their needs is chosen. Referrals can be made through GP’s and social services departments.
Death and bereavement
Planning for death
Calderstones Partnership NHS Foundation Trust created a document called a ‘Plan for when I die’ that The National Autistic Society adapted for people with autism This plan looks at everything that needs to be considered and the decisions that will have to be made after a person with autism has died. Talking about funeral arrangements and where possessions will go can be difficult, but giving a person the chance to think about this and share their views and wishes is important.
- whether the person wants to be buried or cremated
- what sort of funeral they would like
- whether they would like any specific songs played
- if they would like a religious figure to be present
- where and to whom their personal possessions should go.
Download a template 'Plan for when I die' resource.
Dealing with the death of someone close to you
People with autism (including Asperger syndrome) need support following the death of someone close to them, just like anyone else. If someone uses a service, a bereavement questionnaire can help staff to provide that support.
On this page you'll find a sample bereavement questionnaire that is based on one used in NAS services. Different organisations will follow different policies and procedures; however, this questionnaire may help you to think about arrangements you'd like to make for your son or daughter following a bereavement.
The questionnaire looks at:
support during bereavement
- financial and legal arrangements
- supportive relationships
- parents' and carers' wishes
- views about death.
A sample bereavement questionnaire can be downloaded here.
Useful resources for older autistic people
Further information on this website:
Useful information and advice from other organisations:
- Passport to individual autism support
A simple PDF document that can help health and social care professionals to understand your communication and support needs. Also useful for employers and Jobcentre staff.
- Ageing with autism - a handbook for care and support professionals
An in-depth guide for professionals who work with older autistic people every day. It looks at a number of issues that older people are likely to face, including physical or mental health problems; change; transition; and bereavement. It suggests ways in which these issues might be managed, with a focus on the older person's quality of life.
- Ageing with autism: a guide for clinicians and health professionals
An at-a-glance e-book guide to some of the main issues faced by older autistic people. It is aimed at professionals such as GPs and hospital staff who may come into contact with autistic people from time to time.
In 2012, The NAS held this conference to look at the unique challenges facing adults with autism as they age.