The short answer
- Autism is a lifelong difference, not an illnessIt affects how a person communicates, experiences the world and takes in information. It is a spectrum of different combinations, not a scale from mild to severe.
- The council must assess, with or without a learning disabilityUnder the Care Act the council must assess anyone who appears to need care and support. Statutory guidance says an assessment cannot be refused on the grounds of IQ.
- The person decides who is involvedAn autistic adult is assumed able to make their own decisions. Family are involved as much as the person wants, and the family can ask for a carer's assessment of their own.
- Paid support can come from a person they choseA direct payment can pay for a support worker the person picked. Carers on PrimeCarers charge £18 to £25 an hour with our fee included.
This page says autistic person, which the National Autistic Society says most autistic people prefer. Some people prefer person with autism, and some still describe themselves as having Asperger's. Use the words the person uses about themselves.
What autism is
Autism is a lifelong difference in how a person experiences the world
The NHS describes autism as a difference in how a person's brain develops that affects how they see and experience the world. A person is born autistic, and it is not an illness, so there is nothing to cure. The National Autistic Society describes it as a lifelong neurodivergence and a disability.
Communication and other people
How conversation works
The senses
Light, sound, smell, taste, touch
Routine and taking in information
Knowing what comes next
A spectrum, not a scale
No two people alike
Some autistic adults learn to hide the signs of autism so they fit in. The NHS calls this masking, and says it can make everyday activities and social life exhausting and stressful. It can also make autism harder to recognise in adults, and the NHS says in women in particular; the NHS page on signs of autism in adults sets out what to look for. Someone who seems to cope well in company may need hours alone afterwards to recover.
You will still hear the words mild and severe, or high-functioning and low-functioning. The society explains that these labels do not describe how a person's needs vary, so this guide talks about the support a person needs instead. Asperger's syndrome is no longer given as a diagnosis: since 2013 in the American manual and 2019 in the international one, it has been part of autism spectrum disorder. Some people diagnosed with it still use the word about themselves, and that is their choice.
This guide sits within the wider disability care section of the site, which covers support at home for disabled adults of working age.
Autism and learning disability
Autism is not a learning disability, though some people have both
Autism, a learning disability and a mental health problem are three different things. The NHS says some autistic people have a learning disability and some have average or above average intelligence. The difference matters when you ask for help, because it changes which team you see and which guides apply.
| What it is | How it relates to autism | Where help usually starts | |
|---|---|---|---|
| Autism | A lifelong difference in communication, the senses and how information is processed. It does not affect intelligence in itself | More than one in 100 people in the UK are autistic, the National Autistic Society says | The GP for a referral for assessment, then the council's adult social care team for support |
| A learning disability | Reduced intellectual ability that affects everyday tasks for life | The National Autistic Society says around a third of autistic people also have one | The GP learning disability register, and the NHS community learning disability team |
| A mental health problem | Anxiety, depression and other conditions that affect mood and thinking, and can improve with treatment | The NHS says anxiety, depression and eating disorders are more likely in autistic people | The GP and NHS talking therapies, adapted for autism as NICE advises |
Autism
- What it is
- A lifelong difference in communication, the senses and how information is processed. It does not affect intelligence in itself
- How it relates to autism
- More than one in 100 people in the UK are autistic, the National Autistic Society says
- Where help usually starts
- The GP for a referral for assessment, then the council's adult social care team for support
A learning disability
- What it is
- Reduced intellectual ability that affects everyday tasks for life
- How it relates to autism
- The National Autistic Society says around a third of autistic people also have one
- Where help usually starts
- The GP learning disability register, and the NHS community learning disability team
A mental health problem
- What it is
- Anxiety, depression and other conditions that affect mood and thinking, and can improve with treatment
- How it relates to autism
- The NHS says anxiety, depression and eating disorders are more likely in autistic people
- Where help usually starts
- The GP and NHS talking therapies, adapted for autism as NICE advises
Sources: NHS, What is autism; National Autistic Society, What is autism; NICE guideline CG142. ADHD and epilepsy are also more common in autistic people, the NHS says.
If an autistic adult also has a learning disability, the learning disability guides in this section apply as well. They are written with a learning disability in mind, so read them alongside the autism guides rather than instead of them. Learning disability: the family guide is the place to start, and benefits for an adult with a learning disability covers money in that case.
A mental health problem needs its own attention and should not be put down to autism. Anxiety that stops someone leaving the house, or a low mood that lasts for weeks, is something to take to the GP. Autism and mental health explains what adapted treatment looks like and where to go.
Rights
The rights an autistic adult has in England
Several laws apply to autistic adults, and they work together. Some protect the person from unfair treatment, some put duties on councils and the NHS, and one keeps decisions with the person wherever they can make them.
The laws and guidance you will hear about
- Equality Act 2010
- A person is disabled under the Act if a condition has a substantial and long-term effect on their normal daily activities. Autism meets this test where it has that effect on the person. Employers, shops, the NHS and councils must then make reasonable adjustments, such as written instructions or a quieter appointment time.
- Autism Act 2009
- Requires the government to publish a strategy for meeting the needs of autistic adults in England, and statutory guidance that councils and the NHS must follow. The current national strategy, published in 2021, covers 2021 to 2026 and includes children for the first time.
- The 2015 statutory guidance
- Tells councils and the NHS to provide an adult diagnostic pathway, including for people without a learning disability, and to tell people after diagnosis that they are entitled to an assessment of their needs.
- Care Act 2014, section 9
- The council must assess any adult who appears to need care and support, whatever it thinks of their level of need or their money. The assessment must involve the person and anyone they ask to be involved.
- Care Act 2014, section 67
- If the person would have substantial difficulty taking part in the assessment and nobody suitable can support them, the council must arrange an independent advocate.
- Mental Capacity Act 2005
- An adult is assumed able to make their own decisions unless it is shown they cannot make a particular decision at a particular time. An unwise decision is not proof of a lack of capacity.
- NICE guideline CG142
- The NHS guideline on autism in adults. It covers diagnosis, support and treatment, and tells staff to keep the same people involved wherever possible.
The line in the statutory guidance that families most need to know is this: assessment of eligibility for care services cannot be denied on the grounds of the person's IQ. An autistic adult who has a degree and a job can still have eligible needs, because autism can make ordinary parts of life, such as shopping, cooking or dealing with post, very hard. The full text is in the statutory guidance on the adult autism strategy and section 9 of the Care Act.
Social care support for autistic adults goes through the assessment step by step. The gov.uk definition of disability under the Equality Act explains the test, and autism and work covers adjustments in a job.
The map of this section
Six areas of an autistic adult's life, and the guide for each
The autistic adult is in the middle of this map, with six areas of life around them. Below the map, each area is a stop on a route, with the things to sort there and every guide that covers it, each with a short answer.
- DiagnosisFinding out, at any age
- Senses and overwhelmEveryday life at home
- Mental healthAnxiety, low mood and demands
- The autistic adultTheir say comes first. Family are involved as much as the person wants them to be.
- HomeWhere to live, and help there
- Support and moneyThe council, benefits, work, breaks
- Life stagesLate diagnosis and later life
Diagnosis
Finding out, at any age
Things to sort
- A referral from the GP for an adult autism assessment
- What to ask for once the report arrives
- Autism diagnosis as an adult
Start with the GP. In England you can choose which NHS service does the assessment, and a diagnosis is not needed to ask the council for help.
Senses and overwhelm
Everyday life at home
Things to sort
- The lights, sounds and smells that make a room hard to be in
- A written plan for what helps during a meltdown or shutdown
- Sensory needs at home
How to go through the home room by room, looking at light, noise, smell and touch, and what to change first.
- Meltdowns and shutdowns
Both are responses to being overwhelmed, and neither is bad behaviour. Time, space and less noise help more than questions.
- Autistic burnout
Exhaustion that builds when demands outweigh what a person can manage over a long time, with a loss of skills and less tolerance of noise and light. It needs fewer demands, not more effort.
Mental health
Anxiety, low mood and demands
Things to sort
- A GP who knows about the autism diagnosis
- Therapy adjusted for how the person communicates
- Autism and mental health
Anxiety and depression are more common in autistic people. They can be treated, and NICE says talking therapies should be adapted for autistic adults.
- PDA in adults
A profile some people and clinicians use for a strong need to avoid everyday demands. It is not a separate diagnosis in NICE guidance or the diagnostic manuals.
Home
Where to live, and help there
Things to sort
- Where the person wants to live, now and later
- Support at home that keeps the same people and the same routine
- Living with parents, and moving out
Plan early, move in stages, and set up support before the move so that it stays the same afterwards.
- Autism support at home
How to set up the environment and the routine, and how to find one carer who can stay for a long time.
Support and money
The council, benefits, work, breaks
Things to sort
- A care needs assessment from the council, and a carer’s assessment for family
- Benefits claimed in the person’s own name
- Social care support for autistic adults
The council must assess anyone who appears to need care and support. It cannot refuse because the person has no learning disability.
- Benefits for autistic adults
Personal Independence Payment depends on how hard everyday tasks and getting around are. A person can get it while working or with savings.
- Autism and work
Employers must make reasonable adjustments, and an Access to Work grant can pay for practical support such as a job coach.
- Autism respite and short breaks
A break can be planned around the person’s routine and familiar people, at home or away, and the council may help pay.
Life stages
Late diagnosis and later life
Things to sort
- Making sense of a diagnosis that came late
- Plans for health, money and support as the person gets older
- Autistic women and late diagnosis
Masking can make autism harder to see in women, and some are not diagnosed until well into adult life.
- Autism in later life
Retirement, a hospital stay or a move to new support are big changes, and each one needs planning well ahead.
Most of what sits on this map is reached through two doors. The GP is the way in for a diagnosis and for health. The council's adult social care team is the way in for support at home, a personal budget and breaks, and it must assess whether or not there is a diagnosis. If you are not sure where to begin, ask the council for a care needs assessment; local authority funding explains how to ask.
For family
For family: helping without taking over
Parents, partners and brothers and sisters can be the people an autistic adult trusts most, and their knowledge is useful to any assessment. The law still starts from the person. NICE says that when an autistic adult wants their family involved, professionals should encourage it and agree with everyone what information is shared.
What helps
- Ask the person what they want from you, and ask again when things change
- Agree with them what you may be told by the GP or the council, and put it in writing
- Write down what you know about their routine, their senses and what helps when they are overwhelmed, and let them read and change it
- Ask the council for a carer's assessment for yourself
- Give them time to answer, and accept a message instead of a phone call
What tends to go wrong
- Speaking for them in a meeting when they can speak for themselves, in words or in writing
- Arranging support or visitors without asking them first
- Treating a meltdown as a tantrum, or a shutdown as ignoring you
- Assuming that because they cope at work or with friends, they cope everywhere
- Carrying on alone for years without a break until you cannot continue
If the autistic adult does not want you involved, NICE says the family should still be given information about autism, local support for families, and their right to a carer's assessment. Their decision about their own care stands. The Mental Capacity Act says a person must be assumed able to decide unless it is shown otherwise, one decision at a time, and being a parent does not give you legal authority over an adult son or daughter. Where a person cannot make a particular decision, it is made in their best interests, and whoever makes it must consult the people who know them. Making decisions for a grown-up son or daughter explains how this works; it is written with a learning disability in mind, and the law is the same.
As a carer you have your own right to an assessment from the council, whatever your savings. It can lead to support for you, including breaks. What a carer's assessment is explains how to ask, and autism respite and short breaks covers breaks planned around the person's routine. If the autistic adult lives with you and wants to move out one day, living with parents, and moving out covers how to plan it.
Paid support
Where paid support fits: a person they choose, and the same person each time
For many autistic adults, the most important thing about paid support is who gives it. A support worker who is always the same person, arrives when they said they would and does things the agreed way removes a great deal of uncertainty. NICE tells professionals to keep the same people involved wherever possible for this reason.
- 1
Ask the council for an assessment
Free, whatever the savingsAsk for a care needs assessment for the autistic adult, and a carer's assessment for family who help. If needs are eligible, the council writes a care and support plan with a personal budget. - 2
Ask for the budget as a direct payment
If the person wants to choose who helpsA direct payment can pay for support the person chooses. Each council has its own rules about who can be paid and what records it needs, so ask the direct payments team before you agree anything. - 3
Choose the person together, and meet first
The autistic adult has the final sayRead profiles together and meet two or three people somewhere calm and familiar, or by message first if that suits the person better. Ask each one what support they have given before and for how long. - 4
Agree the routine and the contact in writing
Before the first visitThe days, the times, what each visit is for, how the carer will message before they arrive, and what happens if something changes. Start with short visits, and keep the same person.
PrimeCarers is an introductory service. We introduce self-employed carers and support workers, and we do not provide, deliver or manage care. The autistic adult, or their 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. They can keep working with the same person for as long as it suits them both. When you are ready, search for carers near you and compare their rates and profiles.
Before a carer appears in a search we check their ID 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. Separately, carers are insured while they work. We do not check qualifications, training or references, and there is no way to search carers by autism experience. What a carer says about that is their own account on their profile, for you to check when you meet them. Questions to ask at interview has a list to start from, and autism support at home covers setting up the environment and the routine before the first visit.
If the autistic adult wants family involved, family members can be invited to the same PrimeCarers account, each with their own login and a level of access the account owner chooses. Visit reports written by the carer then go by email to those with the right level of access. An adult who can make the decision decides who sees their information. Sharing care with family on PrimeCarers explains the access levels.
Asking the council
Asking the council for help, and what to do if it says no
The council's adult social care team is where support at home, a personal budget and breaks begin. You can ask by phone, online or in writing, and an autistic adult can ask for the assessment to be adjusted to suit how they communicate.
- Ask
Contact adult social care
Say that the person is autistic, what they find hard, and how they want to be contacted. Asking in writing gives you a record, and the person can ask for questions in advance.
- Assess
The assessment itself
It must involve the person and anyone they ask to be there. It looks at the outcomes they want in daily life, not only at tasks. If they would struggle to take part and nobody suitable can help, ask for an advocate.
- Decide
Eligibility, in writing
The council decides whether the needs are eligible and must give you a written record. Ask how each part was assessed if anything is missing.
- Plan
A care and support plan and a personal budget
The plan says how needs will be met and how much it will cost. This is when to ask for a direct payment.
- If refused
Review, then complain
Ask for the reasons in writing and for a review. If that does not settle it, use the council's complaints procedure.
- After that
The Ombudsman
If the complaint is not resolved, the Local Government and Social Care Ombudsman can look at it, free of charge.
Adjustments to the assessment are part of the person's rights under the Equality Act, and NICE tells professionals to take communication needs into account. Useful ones to ask for include the questions sent in writing beforehand, a quiet room or a video call, extra time, and a written summary afterwards. The Local Government and Social Care Ombudsman explains how to complain once the council's own process is finished.
Money is a separate question from the assessment. The council may ask the person to pay towards their support, depending on their income and savings, and benefits are claimed from the Department for Work and Pensions in the person's own name. Benefits for autistic adults goes through what can be claimed, and direct payments explains how a personal budget can be paid as money.
Questions
Questions about autism in adults
Neither. The NHS describes autism as a difference in how the brain develops, and says it is not an illness. Some autistic people also have a learning disability and some have a mental health problem, and each of those needs its own support. Autism and mental health covers the second.
No. Under section 9 of the Care Act the council must assess any adult who appears to need care and support, whatever their level of need or money. The statutory guidance on the adult autism strategy says an assessment of eligibility cannot be denied on the grounds of the person's IQ.
No. The duty to assess depends on whether a person appears to need care and support, not on a diagnosis. A diagnosis can still help, because it explains the needs and should lead to an offer of an assessment. Autism diagnosis as an adult explains how to ask for one.
Yes, if autism has that effect on them. The test is whether a condition has a substantial and long-term effect on normal daily activities, and it looks at the effect rather than the name of the condition. Where it applies, employers and services must make reasonable adjustments.
No. Asperger syndrome was folded into autism spectrum disorder in 2013 in the American diagnostic manual and in 2019 in the international one. Some people diagnosed with it still use the word about themselves, and that is their choice to make.
Not automatically. The Mental Capacity Act assumes an adult can make their own decisions, one decision at a time. Where they cannot make a particular decision, it is made in their best interests, and you should be consulted. Legal authority comes from a lasting power of attorney they made, or from the Court of Protection.
No. There is no way to search or filter carers by autism experience or training. Some carers describe that experience on their profiles, but it is their own account. Ask each carer what they have done, for how long and with whom, and let the autistic adult meet them before deciding.