The short answer
- Predictability is part of the jobArrive at the time you agreed, send the message the person has asked for before you arrive, and tell them early about any change. Follow their routine and their way of doing things.
- Say what you mean, and give time to answerUse plain, literal words and exact times. Ask one thing at a time. Do not expect eye contact or small talk as a sign that someone is listening.
- A meltdown or shutdown is overwhelm, not bad behaviourKeep the person safe, cut down noise, light and talk, give them space and time, and do not ask questions or talk about what happened while they are still overwhelmed.
- You set your own rateCarers on PrimeCarers typically advertise £18 to £25 an hour with our fee included. A £19.47 hour leaves you £15.58 after our 20% commission.
Guidance from the National Autistic Society, NICE guideline CG142 on autism in adults, Autistica, the NHS and NHS England, checked 24 September 2026. PrimeCarers figures come from our pricing rules.
What autistic clients may want
What autistic adults may want from the person who supports them
Every autistic person is different, so the first thing to do with a new client is ask them how they like things done. There are some things many autistic adults ask for, and knowing them before the first visit means the person does not have to explain everything to you from the start.
The NHS describes autism as something a person is born with, and says it is "not an illness". The National Autistic Society calls it "a lifelong neurodivergence and disability" that "influences how people experience and interact with the world". Autism is not a learning disability or a mental health condition, although some autistic people also have one or both. This guide says "autistic adults" and "autistic person", which the National Autistic Society says reflects how many autistic people see themselves. Some people prefer "person with autism", and you should use whatever words your client uses about themselves. Autism in adults is the guide we have written for autistic adults and families, and it helps to know what they may have read before they meet you. This guide sits with the rest of our carer resources on pay, checks and tax.
What a client may ask of you, and why it matters to them
- A message before you arrive
- A text when you set off, or at a set time before the visit, so the knock at the door is expected. Some people also want to know who is coming if anything changes.
- The same person each time
- A new face means learning a new voice, new habits and a new way of being helped. If you take the work on, the person may be counting on you staying.
- Their routine and their order
- The order of the morning, the same seat, the same mug. Routines can make a day manageable. Following them is part of the support, even when you would do it differently.
- Plain, literal words
- The National Autistic Society notes that some autistic people do not take words the way they are meant when they are not literal, such as idioms, jokes and sarcasm. Vague times such as "soon" can be hard to work with.
- No pressure to make eye contact or chat
- Some autistic people find eye contact uncomfortable, and small talk tiring. Not looking at you does not mean they are not listening.
- Respect for their senses
- Light, sound, smell and touch can be much stronger, or much weaker, for an autistic person. Your perfume, your phone or the kitchen light can make a visit hard.
Much of this is also in NICE guideline CG142, which covers autism in adults. It says staff should "take time to build a trusting, supportive, empathic and non-judgemental relationship", "foster the person's autonomy" and "maintain continuity of individual relationships wherever possible". It also asks staff to address the person "using the name and title they prefer" and to explain clearly what their role is.
For you, that means the person leads. They decide what they want help with and how, and your job is to fit in with their life, not the other way round. Where the person has asked for a family member to be involved, you work with that family member as well, but the decisions stay with the person unless they lack capacity for a specific decision. Mental capacity in care explains how that works.
Communication and sensory needs
Communicating clearly and respecting sensory needs: do this, not that
Most of the mistakes that make a visit hard for an autistic person are small habits: a vague arrival time, a question asked twice, a strong smell, a light switched on. The table below sets out the habits to drop and what to do instead, in the order a visit happens.
Do this, not that
Working with an autistic client, from before you arrive to when plans change
Before you arrive
Instead of this
Arriving a little early to make a start, or ten minutes late without a word.
Do this
Arrive at the time you agreed. Send the message the person has asked for, such as a text when you set off, and a new time if you are delayed.
Instead of this
Saying you will be there soon, or some time after lunch.
Do this
Give an exact time, and keep to it.
You might sayI will be at your door at 12.15.
Instead of this
Bringing a friend, a trainee or your child, or sending someone else in your place without warning.
Do this
Come alone unless the person has agreed otherwise. If you cannot come, tell them as early as you can.
Talking and asking
Instead of this
Hints, idioms and questions that mean something else, such as asking whether they fancy a cuppa when you mean it is time for a break.
Do this
Say exactly what you mean, in plain words.
You might sayI am going to make a cup of tea. Would you like one?
Instead of this
Asking again, or rewording the question, when there is a pause.
Do this
Ask one thing at a time, then wait. Silence can mean the person is thinking about the answer.
Instead of this
Expecting eye contact, or making small talk to fill the time.
Do this
Let the person look where they are comfortable. Talk as much or as little as they want, and follow their lead on their own interests.
Instead of this
Talking to the relative in the room instead of the person.
Do this
Speak to the person directly, and accept their way of answering: speech, writing, typing, pictures or a communication app.
Sound, light, smell and touch
Instead of this
Perfume, aftershave, scented hand cream, or the smell of smoke on your clothes.
Do this
Arrive without a scent. Ask before using anything that smells, such as a cleaning spray.
Instead of this
Switching on the main light, the radio or the television, or leaving your phone ringing.
Do this
Leave the lights and sound as the person has them, and keep your phone on silent.
Instead of this
Touching the person without warning, even to guide an arm.
Do this
Say what you are about to do and wait for a yes. Follow the way they have told you they like help with washing and dressing.
The routine, and when something changes
Instead of this
Changing the order of a task because your way is quicker.
Do this
Do things in the person’s order and in their way, even where you would do it differently.
Instead of this
Telling the person about a change when you walk in.
Do this
Tell them as early as you can what is changing and what will happen instead. Put it in writing if that helps them.
You might sayThursday’s visit will be at 2pm, not 10am. Everything else stays the same.
The National Autistic Society's guide to communication asks non-autistic people to "break spoken instructions down and allow for extra processing time", to "accept all forms of communication as valid (not just speech)", and to "recognise that behaviour is a means of communication". Some autistic adults speak fluently and still find talking tiring, especially when they are anxious or at the end of a long day. Others use few words, or none, and communicate by writing, typing, pictures or a communication app. Ask the person how they would like you to communicate with them, and whether they would like you to write things down.
Sensory needs in the person's homeSection titled Sensory%20needs%20in%20the%20person%27s%20home
The National Autistic Society's page on sensory differences explains that autistic people can be much more sensitive than other people to some senses, and much less sensitive to others. Someone who is over-sensitive may find bright or flickering light, sudden noise, crowded places, certain fabrics or strong smells distressing. Someone who is under-sensitive may look for stronger sensations, such as deep pressure, or may not notice cold or pain as quickly.
NICE CG142 lists the things to adjust for autistic adults in any setting, including personal space of "at least an arm's length", lighting and noise. In someone's own home, the person has usually set things up the way that works for them. Your part is to fit in with it. Ask what they find hard before your first visit, write it down, and do not move things without asking. Sensory needs at home is written for autistic adults and families, and shows the kinds of changes they may already have made.
Watch for signs that the person is becoming overloaded. These can include covering their ears, going quiet, moving more, or stimming more than usual. Stimming, such as rocking, flapping or humming, can help an autistic person stay calm or show how they feel. The National Autistic Society says that if stimming is harmless there is no reason to stop it, so do not ask the person to stop.
Meltdowns and shutdowns
What to do, and what not to do, during a meltdown or shutdown
A meltdown or a shutdown happens when an autistic person is completely overwhelmed. Neither is a tantrum, and neither is a choice. Your job is to keep the person safe, take away as much of what is overwhelming them as you can, and give them time to recover.
The National Autistic Society describes a meltdown as "an intense response to an overwhelming situation", in which the person "temporarily loses control of their behaviour". It may show as shouting, crying, or lashing out. A shutdown looks different. Autistica describes it as the person becoming "zoned out" and unresponsive: they may stop speaking, stop moving, or seem not to hear you. A person in a shutdown is not ignoring you or being rude.
Do
- Keep the person safe, and move anything they could hurt themselves on.
- Turn down noise and light where you can, and ask other people to leave the room.
- Use very few words, in a slow and low voice, or stay quiet if that helps more.
- Give the person space and time. Wait nearby, where they can see you if that helps them.
- Afterwards, let them rest, and let them decide whether and when to talk about it.
- Write down what happened before it started, so the person can use it to plan if they want to.
Avoid
- Asking questions, giving instructions or trying to reason with the person while they are overwhelmed.
- Raising your voice, or matching their mood.
- Talking about consequences, or telling them off.
- Touching or holding the person, unless it is the only way to stop them or someone else being hurt.
- Several people stepping in at once.
- Treating a shutdown as a chance to get a task done.
This list follows Autistica's guidance on supporting meltdowns, which also warns against restraint "unless it is a protective action to stop violence, aggression or injury". If the person has a plan of their own for when they are overwhelmed, or a behaviour support plan written with professionals, follow it. Ask about it before your first visit.
After a meltdown or shutdown, the person may be exhausted for hours or longer. Do not expect them to carry on with the plan for the day. If meltdowns or shutdowns are happening more often, that can be a sign of autistic burnout or a change in the person's health, and it is worth telling them, or the people they want involved, what you have noticed. Meltdowns and shutdowns and autistic burnout explain both from the person's and family's side.
PDA and boundaries
Working with a PDA profile, and keeping clear boundaries
Some autistic adults you work with will describe themselves as having a PDA profile. Everyday requests, even kind ones, can feel like pressure to them, and a support worker who gives instructions will find the work hard for both of them. A collaborative way of working usually goes better.
PDA stands for pathological demand avoidance, and some people prefer "persistent drive for autonomy". The National Autistic Society's page on demand avoidance explains that it is not possible to be diagnosed with PDA on its own. Some people have an autism diagnosis with a "PDA profile" or "demand avoidant profile" noted, and others use the term about themselves. Whether local clinicians use the term varies from area to area. What matters to you is that the person has an intense need to be in control of what happens, and that demands, including ones they would like to meet, can make them very anxious.
Leave the choices with the person
Work alongside them, not over them
Cut down the demands you make
Agree things in advance, in writing
What works changes from day to day and from person to person. Ask the person what helps them, and what makes things worse. PDA in adults explains the profile for autistic adults and families.
BoundariesSection titled Boundaries
Work with an autistic adult can be close and long-term, and the person may rely on you a great deal. That makes clear boundaries more important, not less. Be exact about what you will and will not do, and when you are available, because an autistic person may take what you say literally and plan around it. If you say you might pop in on Saturday, the person may wait in all day.
Keep to the tasks and times you have agreed, keep the person's money separate from yours, and do not share your personal social media. If the person wants more contact than you can give, tell them kindly and plainly, and then keep to what you said. Professional boundaries with clients and families covers gifts, messaging and friendship. If you think someone is being harmed, safeguarding for self-employed carers explains who to tell and what to write down.
Training and pay
Training that helps with autism support, and what the work pays
No particular course is needed to support autistic adults as a self-employed carer, and PrimeCarers does not require or check any training. Some training will still make you better at the work, and gives a client or family a reason to choose you.
The Oliver McGowan Mandatory Training on Learning Disability and Autism is the training NHS England recommends for health and social care staff. It is co-delivered by trainers who are autistic or have a learning disability. NHS England explains that the Health and Care Act 2022 requires providers registered with the Care Quality Commission to make sure their staff have learning disability and autism training suited to their role. You are not a registered provider when you work for yourself, so the duty does not fall on you, but it is the course families and professionals are most likely to recognise. The National Autistic Society also runs training courses about autism. Training for private carers explains how to judge a course.
Do not offer or suggest any approach that aims to make someone seem less autistic, such as stopping their stimming or training them to make eye contact. The National Autistic Society and Autistica both publish guidance on approaches that respect autistic people, and NICE CG142 sets out what is recommended for adults.
What the work paysSection titled What%20the%20work%20pays
£18 to £25
What carers on PrimeCarers typically advertise an hour
With our fee included. You set your own rate.
£15.58
What you keep of an hour at £19.47
On visits of less than six hours, after our 20% commission.
£15.30
What you keep of an hour at £18 on a long visit
On a single visit of six hours or more, after our 15% commission.
Figures from our pricing rules. You pay your own tax and National Insurance through Self Assessment.
Our commission comes out of the rate you set rather than being added on top. Working for yourself, you give up holiday pay, sick pay and an employer's pension contribution, so the rate you set has to cover those. What carers earn on PrimeCarers shows what a week of work comes to after tax and costs.
Some autistic adults pay for their support with a council direct payment. They may employ you as a personal assistant, with a payslip and paid holiday, or pay you as a self-employed carer if their council agrees. Working as a personal assistant explains the difference.
How clients choose
How autistic adults and families choose a support worker
PrimeCarers is an introductory service. The autistic person, or the family where the person wants them involved, chooses who to contact, meets them first, and agrees the hours, the routine and how contact works directly with that carer. For an autistic client, being able to keep the same person can matter a great deal.
- 1
They read your profile
There is no way to search PrimeCarers by autism experience or training. The person or family reads what you have written, so say specifically who you have supported, for how long, and what the work involved. - 2
They message you
Reply in the way they contacted you, and answer the question they asked. Some autistic adults prefer to arrange everything by message rather than by phone, so offer that. - 3
You meet before any booking
Ask where and how they would like to meet, and whether they want someone with them. Speak to the person directly, even if a relative has arranged the meeting. - 4
You agree how the work will run
The hours, the routine, what to do on a bad day, and how you will let each other know about changes. Put it in writing so both of you can check it later. - 5
You keep to it
The same times, the same way, the same person. If you cannot come, tell them as early as you can, and tell them if you are thinking of stopping so they have time to plan.
At the meeting, the person or family may ask how you would handle a meltdown, what you would do if plans changed, or what you know about sensory needs. Answer from what you have done, and say plainly where you have not done something. Ask your own questions too: how the person likes to be told things, what a good visit looks like to them, and what they find hard. Carer interview questions has more, and writing a carer profile that gets hired shows how to describe your experience. If you also support adults with a learning disability, working as a learning disability support worker covers that work, which overlaps with this but is written with learning disability in mind.
When you are ready for clients near you to find you, you can register as a carer on PrimeCarers and set your own rate, or first see the carer jobs posted near you. Clients search and choose who they contact, so registering does not bring bookings on its own.
Questions
Questions carers ask about supporting autistic adults
No particular course is needed to work for yourself, and PrimeCarers does not require or check training. The Oliver McGowan training and courses from the National Autistic Society help you do the work well, and a client or family may ask what you have done. Keep your certificates ready to show.
No. There is no search or filter for autism experience or any training. Clients read what you have written on your profile and ask you when you meet, so describe your experience specifically.
Both happen when an autistic person is overwhelmed. In a meltdown the person may shout, cry or lash out. In a shutdown they may go quiet, stop moving or stop responding. Neither is deliberate. Meltdowns and shutdowns explains both.
No. Many autistic people find eye contact uncomfortable, and not looking at you does not mean they are not listening. Let the person look where they are comfortable.
No. The National Autistic Society says autism is not a learning disability or a mental health condition, although some autistic people also have one or both.
Be kind and clear. Explain that you are there as their support worker, and say exactly what contact you can offer and when. Professional boundaries covers this in more detail.