Respite and short breaks for families of an autistic adult

A carer at home keeps the most things constant: the room, food, sounds and timetable stay as they are, and only the person with them changes. For someone who finds new places hard, a familiar carer at home can suit far better than an unfamiliar setting. Respite at home or in a care home compares the two in general terms.

Breaks away from home can go well too, and some autistic adults look forward to them. The National Autistic Society lists family-based short breaks, centre-based short breaks and joint holidays among the options, as well as a sitting service or a personal assistant staying overnight at home. Shared Lives explains how a Shared Lives arrangement begins, and holidays as a disabled person in the UK covers taking a carer with you.

Ask the person which kind they would prefer, in whatever way they communicate best. An autistic adult who can make the decision has the final say. The Care Act statutory guidance says the adult's wishes should be taken into account when the council arranges care to give a carer a break, and that they may not want that care in a particular form (paragraph 11.44).

Write a one-page profile for whoever will be with the person, with them if they want to be involved: how they communicate, how long to wait for an answer, what they like to be called, and what overwhelm looks like for them. Say what helps during a meltdown or a shutdown. A meltdown is not bad behaviour and a shutdown is not ignoring someone, and a carer who knows the signs in advance can reduce what is coming in rather than adding to it. Meltdowns and shutdowns explains both, and sensory needs at home helps with the sensory list.

NICE guidance on autism in adults asks services to take the physical environment into account, including personal space, lighting, noise and the use of visual supports such as labels with words or symbols (recommendation 1.1.8). You can ask a short-break unit or Shared Lives carer what adjustments they can make before the first stay. Autism support at home shows how the same list works for a carer coming into the house.

1. 1

   Meet the carer at a time and place the person chooses

   First contact

   Keep it short, with the finish time said in advance and the agenda sent beforehand. A video call before a visit at the house suits some people.
2. 2

   The same carer, on the same day and at the same time, with you at home

   The next few weeks

   The carer joins in with something the person already enjoys. You stay in the house but step back a little more each time.
3. 3

   You go out for an hour

   When the person is ready

   Tell the person beforehand in the way that works for them, say exactly when you will be back, and come back at that time.
4. 4

   An afternoon, a day, then the evening routine

   Over the following weeks

   Before any night away, the carer does the evening routine once while you are still at home, so the first night is not the first bedtime with them.
5. 5

   A night, then a weekend

   At the person's pace

   A hard visit is a reason to slow down for a week and look at what went wrong. It is not a reason to stop.

Keep the arrangement the same once it works: the same carer, the same day and the same start time. NICE guidance on supporting adult carers says breaks should be arranged in a way that gives reliable and consistent support, avoiding last-minute changes. For an autistic adult, a change of face or time at short notice can undo weeks of getting used to someone. Ask carers about their availability over months, and agree what happens if they are ill. When your carer is ill or on holiday covers planning for that.

PrimeCarers is an introductory service. The autistic adult, or the family where the person wants them involved, chooses the carer, meets them first, and agrees the hours, the routine and how contact works directly with them, and can keep working with the same person. There is no way to search or filter carers by autism experience. What a carer says about their experience is their own account on their profile, and you check it with them at interview. Every carer's identity and right to work are checked, they have an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and they are interviewed online. Separately, carers are insured while they work. Questions to ask at interview has questions worth asking, and how we vet every carer sets out the checks.

Ask adult social care for both assessments at the same time if the person agrees. Section 10 of the Care Act 2014 sets out the carer's assessment, and NICE guidance on autism in adults says families, partners and carers should be told of their right to one. What is a carer's assessment? walks through the day itself, and getting social care support as an autistic adult covers the person's own assessment.

Because care that gives you a break is a service to the autistic adult, the statutory guidance says they need to agree to receiving it in that form, and any charge falls to them. If they can make that decision, it is theirs to make. If they cannot, making decisions for a grown-up son or daughter explains capacity and best interests; it was written with learning disability in mind, and the law is the same.

A direct payment can pay a self-employed carer or a personal assistant the family chooses, which is how a family keeps the same familiar person. Under the direct payment regulations it cannot normally pay a close relative who lives in the same household, unless the council considers it necessary. Direct payments covers how to ask, personal budgets and personal health budgets explains how the amount is set, and how to fund respite covers grants and other routes.

For a holiday with support, ask the same questions as for any break: photographs first, who will be with them, and where they can go to be quiet. Can you take a carer on holiday with you? covers the practical side, including paying for the carer's travel and room.

If you need a break urgently, because a parent is taken ill or a situation at home has become unsafe, the council can meet urgent needs before an assessment is finished. Emergency respite sets out who to ring.

If a break brings guilt with it, that is not a sign that you are doing something wrong. Feeling guilty about taking a break talks this through. NICE also recommends telling carers about peer support, which it says can reduce isolation and give emotional support. Some parents and partners of autistic adults are autistic themselves, and NICE says autistic adults with caring responsibilities should get support to reach the full range of health and social care services. Autistic burnout may be useful if that applies to you as well as to the person you support.

If brothers or sisters help, they can join your PrimeCarers account with their own login, at a level of access the account owner chooses, and receive the carer's visit reports by email, so everyone reads the same account of the break. Where the autistic adult has capacity, they decide who sees their information. Sharing care with family on PrimeCarers explains the access levels.