As autistic people age, so too do their parents, and often this means support responsibilities are passed on to siblings and other family members. All autistic people are different, so any plan will be unique to your family member's situation, needs and preferences. Learn about the practical measures you can take to plan for the long term, share information, get support, and find further resources such as our free guide to wills and trusts.
When to plan
A sudden illness, bereavement or other change in circumstances may force you to make quick decisions. But by planning well in advance, when things are settled, you can:
- advocate for your autistic family member
- support them to consider the options
- make small changes gradually, such as taking up the option of respite care, or outreach support
- help them to prepare for future changes.
How to plan
Your autistic family member, and everybody who supports them, should be involved in creating a plan for the future. People may have differing ideas which will need to be considered carefully. An external facilitator can be helpful, for example a social worker or family friend. You, or an independent advocate, could support your family member to complete a self-advocacy booklet.
It is helpful if the plan is written down, made available to all those involved, and reviewed on a regular basis every one or two years unless a significant change happens in the interim.
What to plan
A good starting point is to establish a shared view of the future. Consider:
- the type and level of support your family member needs. Keep a diary for a month of all the support you and others give to get a clearer picture. Read about getting needs assessed
- where your family member will live. Read more about support options
- who will provide any necessary care. If it is family members, is this a suitable long-term option?
- who will advocate for your family member
- a financial plan, which includes benefits, earnings, any money that may be bequeathed, and support for your family member to manage their finances. It is advisable to seek independent financial advice. Read about life insurance and our free guide to wills and trusts
- a health plan. Ensure you have all health contacts listed. Consider family health in general and any conditions that run in the family: is your autistic family member at increased risk of cancer, heart disease, etc? What things should people look out for? This information should be passed on to future carers. Support your family member to complete a Hospital Passport
- a social plan to ensure the person is not isolated. Who visits them - family members or other people, too? Would a befriender be beneficial? Would they like to join a club, evening class or social group?
- your entitlements and support needs as carers.
Your autistic family member may not be able to make some, or all, decisions independently. It is important that they are supported fully, and their wishes considered in any decision-making process. Read more about mental capacity and managing someone else's affairs in England, Northern Ireland, Scotland or Wales.
You may also find it useful to visit the My Adult- Still My Child website. This is aimed at those new to making Best Interest Decisions and especially those caring for a young person in transition to adult services.
Keeping and sharing information
List of useful contacts
Keep a list of useful contacts for your family member. Here are some you may need.
- health – GP, consultants, psychologist, psychiatrist, community psychiatric nurse (CPN), learning disability nurse, optician, counsellor, dentist, out-of-hours emergency numbers
- social care – social worker, care manager, etc. Out-of-hours emergency numbers
- residential service - manager and key worker contacts
- care agency staff
- housing contacts – landlord, agency contacts
- banking details and contacts
- benefits details and contacts
- employer's details and contacts
- local neighbours; anyone who has a key to their home
- befriender's and advocate's details.
An 'all about me' book
You could support your autistic family member to create a ‘This is my life’ or ‘All about me’ book. This will be useful for other family members in an emergency, or when the time comes for them to take over responsibility for support. Such a book might include information on the following details:
- appointment dates: hospital, optician, dietician, dentist, counsellor, community psychiatric nurse, psychologist, psychiatrist
- medications currently taken and any allergies. Who is reviewing, prescribing or monitoring these? Who is making sure they are administered correctly?
- health needs. For example, does your family member have depression? Are they prone to chest infections? Are they on a special diet? How do they exercise?
- daily life schedule – morning and bedtime routines, usual meal times, weekly schedule of support centre visits, work, volunteering and so on. Who are the contacts for these activities?
- things your family member can do for themselves - for example getting dressed, paying bills, personal care
- things they require support with, for example shopping, cooking
- likes and dislikes – people, food, drinks, places, clothes
- triggers that may affect mood and anxiety levels, including any sensory issues
- anxiety indicators. How do you know when he or she is becoming anxious?
- strategies that are used to manage behaviour and reduce anxiety. What has been tried? What works?
- communication. What forms of communication are used, eg PECS, Makaton, visual supports, a smartphone/tablet app?
- hobbies, social activities and special interests.
- friends and other people who are important, eg befrienders, advocates
- transport. How does he or she get to work or their support centre? Who is the contact?
- dates for future care review meetings.
Share with others who may need them:
- your contact details and those of other family members
- the plan you have created
- where to find relevant documents.
Getting support from social services
If social services are not currently aware of your autistic family member, now would be a good time to ask them to do a community care assessment
to find out what support they need and are entitled to. If your family member already has a social worker, it is important to keep them informed of any changes that occur. Get advice from our Community Care services
Meeting your needs as a carer
There are a number of things you can do to help to ensure your needs as a carer are met:
- ask for a carer's assessment from social services
- tell your GP that you are a carer, so that they can help you to look after your own health. As a carer you may be entitled to the flu jab
- tell your employer you are a carer. You may be entitled to flexible working arrangements
- make time for yourself
- ask for support from other family members or friends
- be realistic about what you can do and seek support where necessary.
Checking benefit entitlements
You should make sure that your family member, and those caring for them, are receiving their full benefits entitlements. You also need to be aware how these entitlements could change if living and care arrangements alter in the future. Get advice from our Welfare Rights service.
Parents sometimes shelter siblings from the pressures of caring, whereas others have been heavily involved from an early stage. Siblings can start to be involved by attending review and planning meetings, visiting their sibling's home or support centre and attending any social events they hold, and joining the local NAS branch or support group.
Further information and support
Last reviewed 07 September 2016