Autistic adults living with parents, and moving out

What matters is whether the arrangement works for everyone in the house. Living at home as an adult is different from living there as a child: the adult has their own money, their own say, and their own part in how the house runs. When that is missing, tension can build on both sides.

The last point in each list goes together. Some autistic adults will want to live at home for a long time, and some will want to leave as soon as they can. The rest of this guide covers both: support that makes living at home easier, and the steps for moving out when that is the plan. If you are new to the subject, autism in adults is the guide to start from, and disability care at home covers support more widely.

1. 1

   Ask for a needs assessment for the autistic adult

   Care Act 2014, section 9

   Ring adult social care at the council, or ask in writing. The council must assess any adult who appears to need care and support. The autistic adult can ask for it themselves, and can ask for the assessment to be done in writing, at home, or with someone they trust present.
2. 2

   Ask for a carer's assessment for each parent

   Care Act 2014, section 10

   Each parent who gives support can ask for their own. It looks at whether you are able and willing to carry on, now and in the future. Say plainly what you do each week and what you are worried about.
3. 3

   Ask what support could follow

   After the assessments

   This can include support for the adult, breaks for the parents, a direct payment to buy support you choose, and information about housing. What the council funds depends on eligibility and a financial assessment.

NICE guidance on autism in adults tells professionals to offer families and carers an assessment of their own needs (recommendation 1.7.1). Under section 10 of the Care Act 2014, the council must assess a carer who appears to need support, and the statutory guidance says it must look at whether the carer will continue to be able and willing to care (paragraph 6.18). It also says councils should not assume that others are willing or able to take up caring roles (paragraph 2.49). What a carer's assessment is explains the day itself, and getting social care support as an autistic adult covers the needs assessment step by step.

Breaks are part of support for parents, and they can also be useful practice for the adult. Autism respite and short breaks covers the options. Carers UK gives advice to family carers on their rights, money and support.

The Care Act statutory guidance names this kind of help as housing related support: help with welfare benefits, budgeting skills, social networks, and education, training and work, which it says can prevent or delay the need for care (paragraph 15.62). Ask about it at the needs assessment. The sensory side of a first home matters too, from the lighting to the noise from neighbours, and sensory needs at home covers what to look for.

A useful rule while you practise is to change one thing at a time. Take over one job, keep it going for a few weeks, and only then add the next. Doing several at once can be tiring, and autistic burnout explains why too much change at once can lead to skills that were there becoming harder for a while.

Social housing and disability. In England, councils must give reasonable preference on their housing register to people who need to move on medical or welfare grounds, including any grounds relating to a disability. That is in section 166A of the Housing Act 1996. It does not mean a home straight away, and each council has its own rules and waiting lists. Send evidence with the application, such as a letter from the GP or the autism assessment, and explain what the autistic adult needs from a home: a quiet position, not sharing a front door, being near family or a familiar bus route.

Supported living and Shared Lives. The NHS guide to supported living describes it as suitable housing combined with some personal care, with the care given by agencies registered with the CQC. The NHS guide to Shared Lives says some people move in with a Shared Lives carer, while others visit by day or stay overnight, and that schemes are registered with the CQC. Two of our guides explain these in more detail, written with learning disability in mind: supported living versus care at home and Shared Lives.

Renting privately. The National Autistic Society has published a guide to reasonable adjustments and adaptations in rental housing, for autistic tenants who want to know what they can ask a landlord for.

The steps overlap. The council assessment on step two and the housing register on step five can be started early, because both can take time. Short stays on step four can happen at any point, and they can show everyone what the autistic adult needs from a home.

Try not to let a crisis decide the timing. A move made in a hurry, after a parent is taken ill for example, leaves no time for visits or for meeting the support worker first, so start the early steps even if moving is years away.

A support worker can help with the practical jobs above, and also with things like getting to a new GP, learning a bus route, or making a phone call the person finds difficult. The details are agreed between the autistic adult and the support worker. When you are ready to look for someone, you can search for carers near you and compare their rates, and read the profiles together if the autistic adult wants that.

Choosing the person matters here. For many autistic adults, seeing the same person at the same times each week makes support much easier to accept. On PrimeCarers, the autistic adult chooses the support worker, meets them first, and agrees the hours, the routine and how they keep in touch directly with them. They can keep the same person for as long as it suits them both.

PrimeCarers is an introductory service. We introduce self-employed carers and support workers, and we do not provide or manage care ourselves. Before a carer's profile appears, we check their identity and right to work, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. Carers are insured while they work. We do not check qualifications or training, and there is no way to search carers by autism experience. What a carer says about their experience is their own account on their profile, so ask about it when you meet.

Some parents want to know how things are going once their son or daughter has moved. That is the autistic adult's decision. If they want it, the account holder on PrimeCarers can invite family members with their own logins, including View Only access, and family members on the account can receive the support worker's visit reports by email. Sharing care with family on PrimeCarers explains the access levels.

The rules on help with rent for renters under 35 are in the Universal Credit Regulations 2013, and the claim conditions are on the gov.uk Universal Credit pages. The DWP's guidance on appointees covers when one can be made. Benefits for autistic adults goes through PIP, Universal Credit and the rest in detail, and Carer's Allowance explained covers the parent's side.

Tell the DWP and the council about the new address, and set up rent and bills on direct debit before moving day if you can, so there are fewer letters to deal with in the first weeks.

The power for the council to meet urgent needs before an assessment is in section 19(3) of the Care Act 2014. When the parents can no longer cope covers the whole plan, including wills, trusts and brothers and sisters. It is written with learning disability in mind, and the planning in it applies to autistic adults too.