Adult autism support for older carers
Whether you’ve been caring for a loved one their whole life, or you've taken on the responsibility more recently, it can be daunting to think about someone else managing their care. It can be reassuring to know that you’re not alone - the 2021 census revealed that there are over 1.2 million carers aged 65 and over in England and Wales.
As you grow older, new challenges can emerge: changing energy levels, health issues, and the need to plan for the future. This guide is designed specifically for older carers aged 55+ who are supporting an adult child or loved one with autism or a learning disability, looking for further support.
Why planning for support becomes more important as older carers age
As you age, your physical stamina, mobility, and health may change. What felt manageable before, such as helping with meals, personal care, and routines, can become more demanding. Waiting until a crisis (for example, hospitalisation or a sudden illness) to make care decisions can lead to rushed, less-than-ideal outcomes. Early planning gives you and your loved one choices.
Ross moved to Lifeways after his parents realised it might be time to look at alternative care options once they reached their seventies.
“When Ross turned 37, we started to realise it might be time for Ross to leave home. We were both in our seventies, and as we were getting older, it was becoming increasingly difficult to look after Ross, even with the support of a carer for a few hours a week,” said Ross’ mum, Annie.
“Ross’s personal care and eating were our main concern, but since he’s been here, he’s eating really well and has put on weight. He’s really enjoying his life here - he’s happier, has made friends, and loves his support team.”
Signs that you may need more support
Look out for these signs in yourself or your partner:
- increased difficulty with personal care, feeding, and hygiene of your loved one
- fatigue and mental stress
- inability to manage emergencies (falls, medication)
- social isolation
- conflicts and relationship strain
How do I know if my loved one is eligible for support?
In the UK, there is a minimum threshold at which people are entitled to support from the government. There is a list of requirements your loved one will have to meet in order to be eligible for support, and they must need assistance with two or more of the following:
- managing and maintaining nutrition
- maintaining personal hygiene
- managing toilet needs
- getting appropriately clothed
- being able to make use of their home safely
- maintaining a habitable home environment
- developing and maintaining family or other personal relationships
- accessing and engaging in work, training, education or volunteering
- making use of necessary facilities in their local community, including public transport and recreational facilities
- carrying out any caring responsibilities they have for a child.
As an older carer, maintaining a good level of care for these requirements could get more difficult, and so it's important to start thinking about how these will be maintained moving forwards. If you believe at least two of these requirements are met, speak to your GP or get in touch with your local council to arrange a full needs assessment.
If a full needs assessment is identified as the next step, use it as an opportunity to share your needs and wishes for your loved one and for your family. Your loved one should be included, encouraged and supported to make their own decisions, wherever possible.
What are the benefits of support?
Getting support for your loved one can feel daunting, but there are many benefits that come with it.
At Lifeways, your loved one will be supported to maximise their independence and achieve their goals, whilst also being given the opportunity to make new friends and pick up new skills and hobbies.
Your loved one will have their own space and the reassurance of extra support, and you’ll have full peace of mind that they’re safe and cared for. You’ll still be able to stay closely connected, and you will be encouraged to spend as much time with your loved one as you’d like.
We often find that relationships grow and blossom when the people we support move into their accommodation, as the responsibility of daily care is eased, and there’s more room to create lifelong memories.
“It’s the best of both worlds - we can come any time to visit, but also it’s lovely for us to be able to go out now, visit friends, go shopping. And Ross and Tara (his sister) get on better now than they’ve ever done before,” said Ross’ parents.
What are the options for support?
At Lifeways, there are two types of accommodation on offer for those that we support:
- Supported living
- The adult has a tenancy or home and receives tailored support
- Encourages independence (cooking, personal care, social inclusion)
- Suited for individuals who can manage some tasks with support
- Residential care
- 24/7 staff support, adapted environment, shared living areas
- Best for those with complex needs who require greater support
Who is supported living right for?
People living in supported living accommodation will have a tenancy agreement and be responsible for any bills, the cost of any furnishings and for the general upkeep of their home. Supported living is ideal for those who live with some level of independence, although 24/7 support can still be provided where required.
They will have the opportunity to live with like-minded people, and can play an active part in the local community.
Who is residential care right for?
People living in residential care are likely to live in communal-living homes with team members on hand to support them and the other residents. Your loved one will have their own bedroom and will share the communal areas of the property, such as living areas, kitchens and dining rooms. This type of care is suited to individuals who might require 24/7 support in specially adapted locations.
The consistent hands-on support, mixed with individual privacy and the opportunity to socialise and spend time with others, are all wonderful benefits of residential care.
Real stories: Moving to residential care
Gillian suffers from cerebral palsy and severe learning difficulties. Until early 2018, she had lived with both her parents in the family home and attended a local day centre. Sadly, Gillian lost both her parents and moved in with her brother and his family, who felt that Gillian might actually be happier in her own home.
“After family discussions, we realised we wanted to give Gillian the chance to live more independently in her own home for the first time in her life. From the start, the local Lifeways service appeared to be the perfect place. The manager spent so much time with us and Gillian, ensuring that every need and concern was considered.
“As a family, we are so grateful for all the help we have had from every member of Lifeways. All the staff at Gillian’s service are an absolute credit to the organisation,” said Gillian’s sister-in-law.
Deciding between supported living and residential care
How do I know what level of support my loved one needs?
Start by arranging a professional assessment through your local authority or social services. Therapists or doctors who know your loved one can also give helpful input. Think about how much support they need with everyday tasks like cooking, washing, or moving around safely. This baseline helps guide which type of service will suit them best.
How important are personal preferences in choosing care?
Very important. Practical needs matter, but your loved one’s happiness depends on the details that shape their daily life. Do they want to live close to family? Would they feel more comfortable in their own room or sharing with others? What kind of social environment helps them feel at ease? Listening to these preferences makes settling into a new place much easier.
What financial help is available?
Care can be costly, so it’s worth exploring all the options. Depending on your situation, your loved one may qualify for disability benefits, local authority support, or specific grants. Each council has its own system, so ask early to understand what funding is available and how it might affect your choices.
Should I visit services before making a decision?
Yes, visiting is one of the most useful steps. Walk around, talk to staff, and notice the atmosphere. Ask about staff training, safety procedures, and how they support residents day to day. If possible, speak with current residents or families to get a real sense of how the service feels.
How involved should my loved one be in the decision?
As much as possible. Even if you’re guiding the process, it’s their future, so their voice matters. Encourage them to share their thoughts and feelings, and involve them in visits or discussions. People are more likely to settle in and feel confident when they’ve had a real say in the decision.
How to seek support
If you’ve made the decision to explore alternative care options for your loved one, it might be daunting to know where to start. The first stage is always to contact your local council or social services department. You may be able to do this online through the council’s website, you’ll just need to find the appropriate contact details for your relevant council.
The UK Government’s website has a handy tool to help. Just input your postcode and it’ll direct you to the relevant council’s website. It’s worth noting that usually you’ll need to contact your county council rather than your district council, as they tend to facilitate social care.
Alternatively, you can book an appointment with your GP, who should be able to refer you to the appropriate provider.
How can Lifeways help?
We will keep you involved in any decision making, or any changes we might propose to make to your loved one’s care. You can find out more about planning for the future here, or get in touch to make an inquiry about care for your loved one.