Getting social care support as an autistic adult: the assessment, eligibility and personal budgets

The autism guidance is statutory guidance issued under the Autism Act 2009, published in 2015 and still the current version on gov.uk. It tells councils to provide specialist autism training for staff who make decisions about autistic adults' lives, including those who carry out needs assessments. The Act gives it the force of guidance under the Local Authority Social Services Act 1970, so councils must follow it unless they have a good reason not to.

Autism is not a learning disability and not a mental illness, although some autistic people also have one or both. The guide to autism in adults covers that, and the disability care section covers support at home more widely. Some guidance still uses the older term Asperger syndrome, which is no longer diagnosed although some people still use it about themselves.

If you are waiting for an assessment of autism itself, you do not have to wait for social care as well. Getting an autism diagnosis as an adult covers that route, and the two can run side by side.

Two things in the regulations matter a great deal for autistic adults. The first is that prompting counts. The statutory guidance says being unable to achieve an outcome includes where someone is physically able to do something but needs reminding or prompting to do it. The second is that distress counts. A person who can go to the supermarket, but comes home unable to function for the rest of the day, may be unable to achieve that outcome in the sense the law uses.

The third test, a significant impact on wellbeing, is judged on the outcomes together rather than one at a time. The guidance says "significant" has its everyday meaning, and that the council should look at what is important to this person, because the same needs can affect two people differently.

1. 1

   Contact adult social care at the council

   Online, by email or by phone

   Find your council’s adult social care team, then use its online form if you prefer writing. Say that you are asking for a needs assessment under the Care Act, that the person is autistic, and give two or three examples of what is hard. Keep a copy and note the date.
2. 2

   Ask for the adjustments that will let the person take part

   In the first contact

   Ask for the questions in writing beforehand, which the guidance says councils should provide in an accessible format. Ask for contact by email or text rather than phone, a quiet place, a set finish time, breaks, and someone the person chooses in the room.
3. 3

   Ask who will assess, and what they know about autism

   Before the date is set

   The assessor must be trained for this assessment, and the council must consult someone with autism expertise where the needs call for it. You can also ask for a supported self-assessment, which the council must offer to someone who is willing and able to do one.
4. 4

   Ask how long it will take

   No fixed legal deadline

   The guidance says the council should tell the person an expected timescale and keep them informed. There is no set number of weeks in law. If nothing has happened after a few weeks, write and ask for a date.
5. 5

   Get the decision in writing

   After the assessment

   The council must give the person a record of the assessment, and a copy to anyone they ask it to send one to. It must also give a written record of the eligibility decision and the reasons for it.

You can find your council's social services through the gov.uk page Apply for a needs assessment by social services, and the NHS explains what a needs assessment involves. The care needs assessment guide on this site walks through the appointment itself. The National Autistic Society has advice on assessments and care plans for autistic adults in England.

The guidance also says the council must involve anyone else the person asks it to involve. If the autistic adult wants a parent there, or wants them kept out, that is the adult's choice where they have capacity to make it.

Masking is worth explaining to the assessor in plain words. The NHS describes autistic adults learning to adapt so that signs of autism are not always noticeable, and says masking can make everyday activities and social interactions feel exhausting and stressful. An assessment is exactly the kind of social situation where masking happens, so ask the assessor to note what the person says about their days, not only how the conversation went.

Fluctuating needs matter here as well. Autistic burnout can remove skills a person had last month, and the guidance tells councils to consider needs over an appropriate period, and to plan for times when needs change. Autistic burnout explains what it is and how it tends to show.

The Act names four areas of substantial difficulty, and one is enough: understanding the information, remembering it, using or weighing it to take part, and communicating views, wishes or feelings. The guidance gives an example that fits many autistic adults: it says a person with Asperger's may be considered to have substantial difficulty in communicating their views, wishes and feelings. The question is how the person communicates, not their intelligence.

The council is meant to consider advocacy at first contact. If it has not been raised, ask for it in writing. A family member who is exhausted, or whose views differ from the autistic adult's, may not be the right person to represent them, and it is reasonable to say so.

For an autistic adult, support is often less about physical care and more about organisation, prompting and company. Depending on the outcomes the assessment found, a plan might include:

• help with daily living, such as planning meals, shopping together, and prompts for washing, medication or appointments
• getting out, such as travelling with the person on a new route until it is familiar, or going to a club, a gym or a GP appointment
• managing the home, such as opening post, paying bills, reporting repairs and keeping up with cleaning and laundry
• social contact, such as regular time with someone the person gets on with, or support to keep up a friendship, a course or a job.

The statutory guidance calls direct payments the government's preferred way to personalise care, and says there should be no unreasonable restriction on how the money is used, as long as it meets the eligible needs. The main limit is on paying a close relative who lives in the same household to provide care, which the council allows only where it decides it is necessary. Direct payments explains how to ask for one, and personal assistants and direct payments compares employing someone with engaging a self-employed carer.

With a direct payment, the person can choose one support worker and keep them. For many autistic adults, a familiar face and a predictable routine matter a great deal, and a rota of different agency staff can make support harder to accept. On PrimeCarers the autistic adult, or the family where the adult wants them involved, can search for carers near you and compare their rates, meet them first, and agree the hours, the routine and how contact works directly with the carer.

For care at home, the person must be left with at least a set weekly amount, called the minimum income guarantee, after any charge. Where disability benefits such as the daily living part of PIP are counted as income, the guidance says the council should let the person keep enough to pay for their disability-related costs. Those can include extra heating, a special diet, laundry, transport the mobility part of PIP does not cover, and other reasonable costs that come from the disability. Ask the council to assess them, and bring receipts or a list.

Councils set their own charging policies within these rules, so two councils can charge the same person differently. Council funding for care covers the means test in more detail, and benefits for autistic adults covers PIP and the other benefits that sit alongside a personal budget.

Ask for the written eligibility decision and its reasons first, because a complaint is stronger when it points to the part that is wrong. Grounds can include an outcome that was not considered, prompting or distress that was not counted, needs judged on one good day, or an assessor who did not have the autism knowledge the regulations require.

Needs change, and a review does not have to wait for a year. If the person moves out of the family home, starts a job, or goes through a period of burnout, ask for a review then. Autistic adults living with parents, and moving out covers the support to plan for when that move is coming.