People with autism (including Asperger syndrome) vary greatly in their support needs. Some live independently but others may require support with certain tasks or, in some cases, may need 24 hour specialist support. The range of support options available to people with autism continues to grow.
Here we outline the main support options available in the UK. The choice varies according to the area you live in, but the most important factor when making support arrangements must always be the needs of the individual concerned.
Sources of support
Everyone needs support at some point in their lives. There are many different types of support available. The support available to you may include:
- family and friends
- voluntary organisations, including support groups and social clubs
- local authority funded support - this would include any services accessed through Social Services.
Types of support services
You may not need all of the services listed below or you may have thought of another type of support that would help you. It is always a good idea to speak to your social worker about any type of support that you think will help you to lead a fulfilling life. Even if it isn’t possible to arrange it, they may be able to suggest an alternative. The most common types of support services include:
- Domiciliary care (support in your home)
- Residential care
- Respite care - if you live with your family, respite care may be provided to allow you to all have a break from one another to allow the support arrangement to continue
- Supported living schemes - living in your own accommodation where support is always on hand and often provided by a warden
- Day centres - these can help you to access activities and socialise with other people
- Supported employment - help people who want to work but need support to do so
- Adult placements - this is a bit like fostering, you live with a family who agree to support you
- Therapists and specialists, such as counsellors or medical professionals.
It may take time to find a suitable support, so it’s essential to plan from an early stage. Waiting for an illness or a crisis may force you to have to act quickly and may mean that you end up with fewer options and not much time to prepare.
If you are the parent of a child with a statement of Special Educational Needs (SEN) then issues such as future support options should be discussed initially at their transition review at the age of 14. Your local Connexions or careers service will be involved in these discussions.
If your child does not have a statement of SEN then it is unlikely that future support needs will be discussed formally at school, but you should still start to think about the options available to your child. If you have a social worker, you should discuss these issues with him or her at an early stage.
If you are an adult with autism, or the parent of an adult with autism, and you are yet to find a suitable support, your first course of action should be to look at the housing options available. Some families are able to have their son or daughter living in the family home whilst others are not in a position to be able to do this. Some people with ASD will not want to continue to live with their parents but may need support to live independently. The best housing option will depend on the specific needs of you as an adult with autism or those of your son or daughter. In some cases, families or individuals may be able to meet their own housing needs, but most other housing options will require assessment and support from social services and/or your local housing authority or association.
Thinking about where to live
1. Independent living
Some people with autism are able to live totally independently without any support from external agencies. If this is the case, your housing needs can be met by the following options:
- Home ownership. You can become a home owner by getting a mortgage and paying for this through earnings (if you are employed), getting a mortgage and using benefits for repayment, inheriting a property (directly or by a trust), joint ownership (parents combining resources to purchase a property for their children).
- Shared home ownership. The ownership of a property is shared between the person with autism and the housing provider. Shared ownership allows you to buy a share of the property and pay rent on the rest to your housing provider. Rent payments may be covered by housing benefit as long as your income and savings are low enough. Shared ownership does not mean that you have to share the property with other people.
- Renting private property. You would pay rent on a property to a private landlord or letting agent. Sometimes the rent will include an amount to cover some or all bills. Many privately rented properties require you to pay your own bills. The exact arrangement will be explained in your contract, or tenancy agreement, with the landlord.
- Local housing authorities or associations. If you think this is a suitable option, you must add your name to the appropriate waiting list as soon as possible. Most council property is allocated according to a points system. Sometimes people are eligible for extra points due to disability. If you are eligible you may go on a waiting list, or you may be given a priority rating and be able to ‘bid’ for properties as they become available (the bidder with the highest priority is allocated the property). The ways in which you can bid may vary from area to area, but you could bid by telephone, online or at the local housing office. Your local housing department will be able to give you further information. Another option is housing association properties. A housing association is a not-for-profit organisation which owns, lets and manages rental housing.
Some people with autism live away from the parental home without formal external support, but are still heavily reliant on parents or other family members to provide them with help (eg managing finances, cooking and shopping). If your parents provide support to you in their own home, they may be entitled to a carer’s assessment from your local social services department. You are also entitled to a community care assessment from social services.
2. Semi-independent living
Some people with autism are able to live semi-independently while getting outside support such as that mentioned above. The main options for semi-independent living are:
- Home ownership with support.
- Part or shared ownership with support.
- Renting private accommodation with support.
- Housing authority/association accommodation with support.
- Cluster housing.
- Small blocks of self-contained flats with a bedroom, bathroom and kitchen - there would be a manager, warden or support worker on-site or providing 24-hour support.
- Supported living - a flexible type of support that helps a person with a disability to live in their own home rather than in residential services. A person might live in their own rented property with a carer or personal assistant visiting to offer an agreed level of support. Or a person might live in a shared flat with a carer living in to provide 24-hour support, or visiting at certain times each day. The level of support depends on the community care assessment that your local social services department carries out.
- Community Support Networks - a self-contained house or flat which is close to other similar houses and flats occupied by people with disabilities. A Community Living Worker (CLW) would also live nearby and would support the community members like a good neighbour, providing information, advice and a sympathetic ear when needed. Network managers support CLWs and also support tenants with specific issues, such as benefits.
3. Living with others
- Adult placements - If a person with autism prefers to live with a family (in a similar way to a foster home), social services may be able to arrange a placement within a family.
- Supported lodgings - Living in someone else's home as a lodger but with extra support at home with things like personal care.
- Homeshare - A person with autism would share their house or flat with a second person who has different needs. Both people will have something to offer each other (eg some people may have a home and need support and help, while other people may need a home and be able to offer help and support).
- Group homes and shared housing - homes are shared by around three or four people. Residents can do their own shopping and cooking, with support from staff who may be present during the day, or visit regularly.
The support required in each of these options will be unique to each person, based on a community care assessment. Usually, this support will be provided by social services - it could be as simple as a couple of hours a month for help with budgeting and paying bills, or it could mean several hours a day to assist with personal care, cleaning and shopping.
4. If you have high support needs
Some people with autism require specialist 24-hour support. This could be for a variety of reasons, such as an accompanying learning disability, mental health issue or medical condition, or it could be for safety reasons (eg if the person lacks awareness of danger). Here are the main options available:
- Parental home. The person with autism lives in the family home with support from social services. If family members are providing this support they should request a carer’s assessment through social services.
- Home ownership with full support. The person with autism owns their own property and gets full-time support from social services.
- Renting with full support. The person with autism rents a property from private landlord or a housing authority/association with full-time support provided by social services.
- Shared ownership with full support. The person with autism part-owns a property and gets full-time support from social services.
- Further Education colleges / residential colleges - this type of residential accommodation is provided alongside an educational placement. Any additional support would depend on an assessment of individual needs.
- Residential homes. Some residential homes cater for people with a range of disabilities as well as autism (eg visual impairment, learning disability) while others cater only for people with autism. The number of people in a residential home could vary from as few as three residents to over 20. There is usually 24-hour care, and this may include personal care.
- Group homes - usually smaller than residential homes and shared by three or four people. If 24-hour care and support is provided, the home will have to meet registration requirements.
All residential homes must be registered. This means they must be vetted to make sure they provide suitable care to people with disabilities. Inspections are carried out regularly and assess a number of factors, including building standards, staffing levels, staff training and experience, health and safety and complaints. Registration requirements are the responsibility of the Care Quality Commission (CQC) in England, the Regulation and Quality Improvement Authority (RQIA) in Northern Ireland, the Care Inspectorate in Scotland and the Care and Social Services Inspectorate Wales (CSSIW) in Wales. You can view details of recent inspections on the website of these organisations.
The housing options listed above are not exhaustive and your local social services department or housing authority may, after consulting you, suggest some alternative options which better meet your specific needs.
Choosing a placement
After considering the various support options available to you, you will need to make a short list of preferred options.
If these options are ones that require local authority support you should contact your local social services department to request an assessment of your needs. For more information please see our Community Care information.
Your local social services department or housing authority may provide you with a list of available housing options in your local area. Many services are listed in our Autism Services Directory. People with autism should be involved as much as possible in choosing their future housing. You may want to consider getting an advocate to help you or your child to get the right support you need from social services. An advocate would work on your behalf and could contact other agencies including social services to ensure that your rights are heard and upheld. You can search for advocacy services in our Autism Services Directory.
We strongly recommend visiting a number of placements so you can fully ascertain the options available. You may well get a good ‘feel’ for some placements, but not for others. Think about what is important to you or your child. How important is location? Does the house need to be within a certain distance of a college, family members or work? Is it within easy access to public transport? Is it in a familiar area? If you are looking at a registered residential service, we recommend that you read the most recent inspection reports.
If you are considering shared accommodation, it may be worth speaking to other residents or their families to find out about their experiences. You might wish to ask whether residents are involved in making decisions about the place where they live - for example, choosing staff or deciding how the house will be run.
You are entitled to see a copy of the service provider’s complaints procedures and their policies on challenging behaviour and other issues, if you want to. (For more information about complaints click here). You might also want to find out about the level of staff turnover and the standard of staff training, especially in relation to autism.
It would be useful to find out if the establishment is has Autism Accreditation or is working towards this.
Adults can claim a variety of benefits to help pay for daily living expenses such as food and bills. You may also be entitled to housing benefit to help with rent.
A summary of your support options
- Start planning early.
- Start thinking about future housing arrangements at the transition review at age 14 for children with a statement of SEN.
- Contact your local social services department to find out about your local authority’s policies on housing and support for people with disabilities.
- Adults with autism may be eligible for a community care assessment carried out by their local social services department. Request this in writing.
- Carers are entitled to an assessment of their needs from social services.
- If you are interested in renting property from your local housing authority or housing association, put yourself or your adult child on their waiting list as soon as possible.
- Find out what services are available in your local area by using our Autism Services Directory
For advice and information about support options or any other community care issues please contact The National Autistic Society Community Care Service:
The NAS is not able to offer legal advice on housing issues. For advice on housing issues such as homelessness, eviction or housing lists or points you will need to contact an organisation that offers advice on housing law, such as:
Housing and Support Alliance
Shelter (England and Scotland)
Offers online information about housing and support for people with learning disabilities and their families.
Tel: 0808 800 4444
Advice finder (to find local Shelter offices and other advice agencies): http://shelter.org.uk/get_advice/advice_services_directory
Online advice: http://shelter.org.uk/get_advice
Shelter Cymru (Wales)
Tel: 0845 075 5005
Online advice: www.sheltercymru.org.uk/get-advice/get-advice-online
National Homelessness Advice Service
(for online information only)
Factsheets and leaflets for tenants: www.nhas.org.uk/publications
Quick link to this page: www.autism.org.uk/supportoptions