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What is autism
Autism is not a mental health condition or a learning disability – it’s a neurodevelopmental condition. When people are autistic, their brains work differently to the brains of people who are not autistic.
Autism can affect the way people experience and understand the world, as well as the way they interact with the world and other people.
If someone is autistic, they will always be autistic – it’s part of who they are.
Why do we say ‘autistic person’ not ‘person with autism’?
If you’re talking about a specific person, it’s always best to check how they prefer to be described. But in general, we talk about people as being autistic, rather than them having autism, because a lot of autistic people have said they prefer this language.
This can be because they think of autism as an important part of who they are. They want to use ‘autistic’ to describe themselves, just as we use words like ‘athletic’ or ‘left-handed’ – they don’t think that they can be separated (as a person) from their autism.
Autistic people might also explain that autism isn’t an entirely negative thing. It can make life harder, and autistic people can be disabled because society isn’t always accessible for them, but autism isn’t a bad thing that people ‘have’. It’s a part of who they are.
‘This world is not designed for me, and I’m not designed for this world, is the way I would sum it up.’
Loveday
Symptoms and signs of autism
Every autistic person is different, but there are some things that all autistic people have in common: they have differences in communication and behaviours and interests (which includes sensory differences) compared to non-autistic people. These differences exist for the whole of their lives.
What differences in communication can autistic people have?
Autistic people might:
- find it hard to understand things like sarcasm
- take things literally, including not understanding what people really mean when they say something
- not understand how people’s tone of voice or body language might change the meaning of what they’re saying
- need more time to understand and respond when people are talking to them
- come across as ‘blunt’ or rude without meaning to
- avoid eye contact
- find it hard to make friends, or prefer to be on their own
- find it hard to express how they feel
- not speak and communicate in another way, for example, through gestures or by using Augmentative and Alternative Communication (AAC) on a phone or tablet
‘I struggled with understanding context, subtlety, reading between the lines – you kind of say the wrong thing, but you want to be part of the gang like everyone else.’
Autistic young person
What differences in behaviour and interests can autistic people have?
Autistic people might:
- find changes to routine especially overwhelming or distressing
- have specific routines, for example, needing to use a specific plate and cutlery or needing to follow exactly the same route to get somewhere they often go
- ask lots of questions so they know exactly what’s going to happen
Autistic people might also ‘stim’ – this is short for ‘sensory stimulation’ and describes repeated movements or behaviours, for example, flapping your hands or repeating a word over and over again. Stimming can be a way of expressing joy or excitement, but it can also be a way of staying calm or coping when things around you are overwhelming.
‘Some of my stims are quite closely linked to anxiety and some of them are linked more to positive feelings, happy feelings. I rock back and forth when I’m excited, but things like skin picking and biting my mouth and lips are more linked to anxiety.’
Loveday
And lots of autistic people have really strong interests, which are sometimes called ‘special interests’. These are often stereotyped as dinosaurs and trains – while some autistic people are interested in dinosaurs or trains, people can be passionate about all sorts of things, from a specific animal or fictional book series to an academic interest or hobby.
‘It’s really fun when I have intense interests. For example, when I was really interested in model making I’d be painting them, I would always be looking for more, thinking about new things I can make, and it was really exciting. But sometimes I get very invested in things and get really committed to them and then get bored of them.’
Sasha
What sensory differences can autistic people have?
Autistic people’s senses can be more or less sensitive than non-autistic people’s. These include the five main senses (sight, hearing, touch, smell, and taste) as well as other things like balance and movement.
For example, an autistic person might find the lights and music in a shop really overwhelming and distressing. Or they might find it difficult to have a conversation in a cafe, if they can’t ‘tune out’ the noise of other people talking around them or the smells of other people’s food and perfumes.
Some autistic people might also seek out sensory stimulation, for example, if they like listening to really loud music or spinning around really fast.
Everyone is different, and one person could have a really sensitive sense of smell, for example, while seeking out loud sounds or bright lights.
‘I have sensitive hearing. A lot of the time, I can hear clocks ticking. I can't eat dinner with my mum if she's eating something crunchy. And when I can hear people breathing it drives me crazy. Noises like someone whistling can be like torture – I get self-conscious about having to plug my ears in public like I’m a small child, so wherever I go, I have my earbuds in.’
Autistic young person
The diagnostic criteria that psychiatrists (medically qualified doctors who are specialists in mental health) use to diagnose autism consider these sensory differences as part of differences in behaviours and interests. However, not all people with sensory differences are autistic.
Some autistic people also experience eating difficulties related to their autism. This is often related to their sensory differences (if they’re sensitive to taste and texture) and can be complicated by fixed or rigid ideas or routines.
What does ‘the spectrum’ mean?
Autism is a spectrum condition. This does not mean that some people can be ‘more autistic’ or ‘less autistic’ – or that everyone is somewhere on a spectrum of ‘not autistic’ to ‘very autistic’.
When people talk about autism as a ‘spectrum’, they mean that every autistic person has different strengths and support needs. Someone might really struggle with social skills but be able to use (and be flexible about) routines in a way that helps them in everyday life, for example, while someone else might be able to manage in most social situations but find it really distressing if their routines are disrupted at all.
How does autism affect someone’s life?
Lots of the ways that autism affects people’s lives are to do with how the world (and society) is set up for non-autistic people.
‘Struggling with things doesn’t make you less of a person. It doesn’t make us worse at being an adult, or anything like that. We’re whole people who have more to us than the things we struggle with, even when societally there might be some expectations and shame around that.’
Loveday
Things that autistic people can find challenging
This list does not include all of the ways that being autistic can affect someone’s everyday life, but they are some common experiences.
Friendships
Some autistic people struggle to make friends or keep friendships. But autistic people can also be loyal friends and have really strong, supportive friendships. Sometimes, autistic people can end up in friendships that aren’t healthy where other people do not treat them kindly.
Sensory differences
Autistic people might find everyday places or situations really overwhelming. They might have strategies to manage this, like wearing noise-cancelling headphones, taking breaks, or bringing items that comfort them.
School and work
Autistic people might need adjustments or extra support to access education or work. For example, they might need things to be written down, or to be given clear guidance about rules. They might also need to be allowed to wear headphones or ear defenders, for example.
Routines
Autistic people can become very distressed if their routines are disrupted or if unexpected things happen. They might need to know a lot of detail about what is going to happen before they do things.
Feeling tired
Autistic people can often feel really tired, especially after social interactions or after being in overstimulating environments.
Positive things about being autistic
While autistic people face challenges, lots of autistic people experience positive things because of autism too. This includes autistic joy, a really intense feeling of happiness and excitement that many autistic people experience. Autistic people also have individual strengths, many of which can feel linked to autism.
Autistic masking
Masking is when autistic people try to appear non-autistic or hide some aspects of their autism so they ‘fit in’ better. People can mask on purpose, or without realising they’re doing it.
Not every autistic person can (or does) mask. Those who do often learn how to act by watching other people or fictional characters.
What are some examples of autistic masking?
Examples of masking can include:
- Forcing yourself to make eye contact or keeping track to make sure you make a ‘typical’ amount of eye contact.
- Changing how you talk, for example, by making sure you phrase things less bluntly or by asking questions even when you don’t care about the answer.
- Hiding your responses to sensory differences, like trying not to flinch if you touch something with an unpleasant texture or trying not to seem distressed by a loud noise.
- Hiding stimming, for example, by going to the toilet to stim or trying to channel it into less noticeable or more ‘acceptable’ stims like fiddling with a pen.
- Planning what you want to say in advance, using words or phrases you’ve learned from others, or making a list of ‘acceptable’ topics to talk about – this can be called scripting.
- Not talking about interests when you want to, or choosing not to wear clothes or use accessories that show your interest.
Who is more likely to mask?
Autistic girls, women, and non-binary people may be more likely to mask because, in general, society encourages or expects them to behave in certain ways (like being polite, thinking more about other people’s feelings, or playing with ‘nurturing’ toys like dolls).
How does masking affect autistic people?
Masking takes lots of energy, because it means someone has to keep checking the environment and what they’re doing. People often have to work really hard to hide their natural responses and replace them with ones that society sees as more ‘typical’ – and this can mean ignoring their needs too.
Masking can have a big impact on people’s wellbeing. It doesn’t mean their autism goes away – it just means that it’s hidden. It can affect people’s self-esteem if they feel like they can’t be their ‘real’ self, and it can be exhausting and lead to burn out. It can also make it difficult for autistic people to connect with other people who are and aren’t autistic.
Masking can also mean that people’s autism isn’t identified, or that they don’t get the support and adaptations they need in education or work. Navigating the world without the right support makes having autism much harder.
Some people also find that they reach a point of distress where they can’t mask anymore, which can lead to an autistic meltdown, shutdown, or burnout.
Autistic meltdown and shutdowns
An autistic meltdown can happen when an autistic person is overwhelmed by a situation and responds in an intense way. They might temporarily lose control of their behaviour, for example, by shouting and screaming or by kicking or flapping.
An autistic shutdown can also happen when an autistic person is overwhelmed by a situation. During a shutdown, people’s distress can feel trapped inside instead of being expressed outwardly. People might not be able to talk or move or might want to curl up or sleep.
Autistic people often show signs that they’re distressed before they have a meltdown or shutdown, and if they’re able to get to a calmer place, access support, or use strategies like using comfort items, they might be able to avoid a meltdown or shutdown.
‘I don’t have meltdowns, but I have shutdowns. There are times when my voice just gets stuck in my head, it could be an hour before I can even get a word out. Even then I have to whisper into my mum’s ear, or I have to type things on my phone to text her.’
Autistic young person
Autistic burnout
Autistic people often find that everyday life takes a lot of energy because they have to manage sensory overload and challenging social situations, on top of all of the demands of day-to-day life.
Burnout is a type of extreme exhaustion that can happen when all of these demands get too much for an autistic person.
What happens during autistic burnout?
Someone who is experiencing burnout might experience:
- more meltdowns and shutdowns than is usual for them
- increased sensory sensitivities
- physical symptoms like headaches or stomach aches
How do you recover from autistic burnout?
Coping with and recovering burnout can involve:
- making sure you have time to rest and relax, for example, by engaging with interests
- having time where you don’t have to mask and can be your true self
- having plenty of time to stim, if you need to
- reducing or increasing sensory input as needed
- reducing the expectations that others put on you, which might involve talking to people like friends and teachers
- being aware of how much energy you have and which activities drain and replenish energy to help you plan what’s manageable
Autism and mental health
Autism is not a mental health condition, but being autistic can affect someone’s mental health, and it’s possible to be diagnosed with a mental health condition as well as autism. In fact, some research suggests that autistic people might be more likely to develop a mental health condition like depression or anxiety.
Lots of autistic people find parts of their daily life overwhelming, and it can be difficult to explain why things are difficult if other people don’t know what autism is. It might affect your mood, or you might find that you worry a lot about your autism or how it affects you in different situations.
Autistic people can often feel misunderstood, especially if adults are frustrated with them when they’re struggling, or if their autism is ‘missed’ and it takes a long time for them to get a diagnosis or the support they deserve.
Autism and learning disability
Autism does not affect someone’s intelligence or cognitive ability.
Some autistic people also have specific learning difficulties or a learning disability.
People with a learning disability find it difficult to understand information, learn things, and build skills. They usually need support to do some things, and it can take them longer to do things too.
Not everyone with a learning disability is autistic, and not everyone who is autistic has a learning disability. It’s estimated that between a third and half of autistic people may also have a learning disability.
People with specific learning difficulties may have difficulty understanding, processing or communicating information. This might mean they need additional supports in order to learn or work to their full potential.
Autism in girls and women
In the past, people often thought that boys and men were far more likely to be autistic than girls, women, and non-binary people, but we now know that is not accurate.
More boys and men are still diagnosed as autistic, but it is not rare for girls, women, and non-binary people to be autistic, and the proportion of people of different genders who are diagnosed with autism is becoming more equal.
The most likely explanation for why fewer girls, women, and non-binary people have been diagnosed as autistic in the past is that they have found it more difficult to get a diagnosis.
‘I definitely think a big reason it was missed in me for such a long time is because I was a pretty typical girl, you know, I had my social groups. I was able to talk to strangers. I didn’t do “stereotypical autistic behaviour” that people think of.’
Loveday
Why have girls, women, and non-binary people found it difficult to get an autism diagnosis?
There are lots of different theories about this, and it’s possible that they all contribute.
Stereotypes about autism can lead people to look for a specific presentation and overlook or miss the signs in girls, women, and non-binary people. For example, they might stim by fiddling with their hair, which might seem more like ‘typical’ behaviour than flapping their hands (which would likely be seen as ‘autistic’). They might have an intense interest in horses or fashion, which isn’t recognised as a potential sign of autism because it isn’t a stereotypical ‘special interest’.
Autistic girls can sometimes ‘hide’ some of the signs of autism by copying how other children behave and play (masking) or by being quieter and not expressing how they feel in an obvious outward way. This might be because girls in general are encouraged or expected to behave in certain ways in society (like being polite or thinking more about other people’s feelings).
Girls’ autism might also be unnoticed if they’re part of a friendship group or if they do really well in academic subjects and the ways that they are struggling are missed.
The assessments that are used for autism might be less sensitive to some of the autistic traits that are common for girls, women, and non-binary people because they were designed based on how autism stereotypically looks in men and boys.
How do you know if you are autistic?
You can only be diagnosed as autistic by a psychiatrist (a medically qualified doctor who’s a specialist in mental health).
Psychiatrists diagnose people using diagnostic criteria – specific guidelines about the signs and symptoms that mean someone is autistic, rather than having any other neurodevelopmental or mental health condition.
Psychiatrists work as part of a team, so you’ll usually see more than one professional as part of the autism assessment process. The team will also collect information from your parents or carers, as well as from your school or college (if relevant).
To see a psychiatrist, you usually need to be referred by a GP or someone at your school. This means that the GP or person at school sends your details on to the service where the psychiatrist works, so they can contact you and offer you an appointment.
Unfortunately, some people have to wait a long time for an autism assessment, but you should still get support while you’re waiting.
Watch: What happens in an autism assessment?
Find out what to expect when you’re referred for an autism assessment.
What causes autism?
We do not know exactly what causes autism. The evidence we have at the moment suggests that autism might be genetic – it might be to do with how the genes that are passed down from your biological parents combine and express themselves during your development.
We know that some things do not cause autism:
- Autism is not caused by parenting.
- Autism is not caused by vaccines (including the MMR vaccine).
- Autism is not caused by anything you eat.
- Autism is not contagious – you cannot ‘catch’ it from anyone else.
Support and looking after yourself if you are autistic
There is no ‘treatment’ for autism. Autism cannot be (and does not need to be) ‘cured’ – it is a difference in how people experience the world and part of who people are.
The NHS website has information about ‘treatments’ that are not recommended for autism because they’re fake or harmful.
NHS - ‘treatments’ that are not recommended for autism
There is support available for autistic people who are struggling, and there are things autistic people can do as part of their self-care to look after their wellbeing.
Therapy or counselling
It can be helpful for autistic people to have talking therapy or counselling, but it’s important that the therapist or counsellor that they’re speaking to is aware of autism and able to adapt how they deliver therapy or counselling so that it meets autistic people’s needs.
Adapting the environment
Lots of autistic people find that they need to adapt their environment, for example, wearing noise-cancelling headphones in the corridors at school, wearing more comfortable versions of uniforms, or having their own desk at work. At work, these are called reasonable adjustments.
Ask for help
If you’re autistic, it is OK to ask other people for help when you don’t understand things. You might find it helpful to ask what people mean if what they’re saying is unclear, or to ask if they can write instructions down if you’re struggling to process them verbally.
Be aware of change
You can also make people aware that change is difficult for you. They can help you make plans and stick to familiar patterns (like taking familiar food on a school trip or day out) and can give you extra support if something unexpected happens.
Self-care
There are also things you can do to take care of yourself, which might help you to manage in a world that is not designed for autistic people. This can include making sure you get enough sleep and finding movement or exercise that makes you feel good. You might have to adapt things to work for you – your sleep routine might be different to someone without autism, and that’s OK.
Time to be you
It can also help for autistic people to have time where they’re free to be themselves, including stimming and engaging with their interests. This also means having time when they do not have to mask.
When self-care is hard
We know that self-care can be harder for autistic people.
How to get more help if you are autistic
Emergency?
If anyone is in immediate danger, call 999 now.
If you need urgent help for mental or physical health, call NHS 111 or get help from NHS 111 online.
If you think you may be autistic (or have a diagnosis but are struggling to manage), the first step is to speak to an adult you trust. This might be a parent or carer, teacher, youth worker, or GP.
Together, you can make a plan so that you get the support you need to manage.
If you’re not sure where to start or want to practise talking about autism before you have a conversation with an adult in your life, you might find it helpful to contact NATTER.
Text NATTER for help
Anyone can text ‘NATTER’ to 85258 to seek
help, wherever they are in the UK. It’s a free, anonymous service and available 24/7.
More about NATTER
There are also local and national organisations that exist to support autistic people.
How to help someone else who is autistic
If someone you care about is autistic, it can be difficult to know how to support them. As well as being a good friend and including them in the things you do, there are some things you could try to help them.
Learn about autism
If you learn more about autism, autistic people don’t have to spend as much time raising awareness. It also means you can better understand what’s going on for them, which can be really helpful if they do something you find difficult, like being quite blunt in conversation.
Appreciate them for who they are
It can make a huge difference for autistic people to not have to mask. You can support them by welcoming stimming, for example. You don’t have to share their interests to support them – just be open if they use their interest to communicate something they want to share.
Think about how you communicate
If you know someone struggles with sarcasm, for example, you could try to avoid being sarcastic or make it clear when you’re making a joke by saying so. You can also ask if they understand and help them figure out other social interactions that they might find confusing.
Be aware of their sensory needs
This can help when making plans of where to spend time or how you get there. It’s not your responsibility to remove everything that’s overwhelming, but you might be able to avoid certain spaces or give your friend time to regulate themselves.
Be open to making plans
It’s impossible to make sure nothing ever changes or goes wrong, but you can support autistic people by making clear plans for spending time together and by doing your best to stick to your word and follow any plans you make.
Help them be kind to themselves
If an autistic person is struggling with something, you can show them that you understand it’s hard, while encouraging them to use any strategies they have to take care of themselves.
Remind them of their strengths
Autistic people spend a lot of time being reminded of the difficulties they have in navigating the world, so help your friends remember what they’re great at and why you love spending time with them too.
Find more information about supporting others, including how to ask someone if they’re OK, how to listen, and understanding boundaries and responsibility.
There’s also support if you’re a young carer, and tips for looking after yourself while supporting someone else.
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