Autism

Summary

Autism has been described using different terms over time, including Asperger’s Syndrome, Autism Spectrum Disorder (ASD) and Autism Spectrum Condition (ASC). These terms may still be used by some people, although autism or Autism Spectrum Disorder are now more commonly used. Asperger’s Syndrome is no longer diagnosed separately from autism in current diagnostic systems.

Autism is a lifelong neurodevelopmental difference that affects how a person communicates, interacts with others, processes information and experiences the world around them. Autism is part of neurodiversity, which recognises that people’s brains can develop and work in different ways. Other examples of neurodevelopmental differences include ADHD, dyslexia and dyscalculia.

There are hundreds of thousands of autistic people in the UK. Autism can affect people of all genders, ethnicities, backgrounds and ages. However, some people may experience barriers to recognition, assessment and support. For example, differences in how autism presents, particularly when someone has learned to mask or compensate for their difficulties, may mean that their needs are not always recognised.

Autism is described as a spectrum because autistic people can have very different strengths, needs and experiences. Being autistic does not mean that someone will have a particular personality, behaviour or level of support need. Two autistic people may have very different experiences, and an individual’s needs can also vary depending on their environment and circumstances.

For an autism diagnosis, assessing professionals look for a pattern of lifelong differences in social communication and interaction, alongside restricted or repetitive patterns of behaviour, interests or activities. These may include a strong preference for routines, repetitive movements or behaviours, highly focused interests, sensory differences or a need for predictability. People may experience these characteristics in different ways, and they can have different effects on everyday life.

Communication

Autistic people can have different ways of communicating and understanding other people. This may include differences in understanding or use of spoken language, tone of voice, facial expressions, body language, gestures, or eye contact. Some people may speak a lot, while others may speak less or not use speech at all. People who do not use speech may communicate in other ways, such as through writing, signing, pictures or Augmentative and Alternative Communication (AAC), including communication apps or devices.

Sensory processing

Autistic people may experience sensory information differently. You might be more or less sensitive to sounds, lights, touch, tastes, smells, movement, temperature, or internal bodily sensations such as hunger, thirst, or needing to use the toilet. What feels comfortable can also change depending on the environment, how you are feeling and who you are with. For example, you might find loud noises overwhelming but enjoy fireworks when you are able to use ear defenders and prepare for the noise.

Interests, repetitive behaviours and routines

Autistic people may have strong or highly focused interests and may spend a lot of time learning about or engaging with things they enjoy. These interests can provide enjoyment, comfort, motivation and opportunities to connect with other people, and may include areas such as animals, gaming, music, transport, anime, psychology or sport.

Some autistic people also use repetitive movements or sounds, sometimes called stimming, to help with focus, sensory processing or managing emotions. This could include rocking, pacing, flapping, tapping, bouncing your leg or making a particular sound. Stimming is not inherently negative and can be a useful way of regulating yourself.

Many autistic people find routines and predictability helpful because knowing what is going to happen can make everyday life feel more manageable. Unexpected changes can sometimes feel difficult or distressing, particularly when you have not had time to prepare. Visual schedules, warnings and having a plan can help make changes easier to manage.

These differences are not automatically problems. They may become difficult when they cause significant distress, make everyday activities harder or get in the way of things that are important to you. Understanding your own needs can help you identify where you might benefit from support or adjustments.

Strengths and challenges

Like everyone else, autistic people have their own strengths, interests and challenges. You might have a strong memory for things you are interested in, notice details that other people miss, have a strong sense of fairness, be creative, caring or determined, or develop a high level of knowledge about a particular subject. You may also find some things more difficult or tiring, such as communicating, managing sensory environments, coping with unexpected changes or completing everyday tasks. Understanding both your strengths and your support needs can help you find ways to live the life you want.

Masking

Some autistic people mask parts of themselves to fit in, avoid standing out or make social situations easier. Masking can happen consciously or unconsciously and might involve making yourself use eye contact even when it feels uncomfortable, rehearsing conversations, hiding stimming, pretending you are not overwhelmed by sensory experiences, or copying other people’s facial expressions, gestures or body language.

Masking can take a lot of mental and emotional energy. You might feel exhausted, anxious or stressed after spending time in situations where you have been masking, or feel like you cannot fully be yourself around other people. Some people may appear to manage well at school or work but become very tired, upset or overwhelmed when they get home because they have been using so much energy to cope throughout the day.

Executive functioning

Executive functioning refers to a group of mental skills that help us manage everyday activities, including starting tasks, planning, remembering information, managing time, paying attention and adapting when things change. Autistic people can experience differences in executive functioning, although this is not the same for everyone.

You might find it difficult to get started on a task, particularly when it feels boring, unclear or overwhelming. You might also find changes to plans difficult to manage, need more time to switch between activities, or find it difficult to manage impulses and emotions when you are overwhelmed. Working memory can affect your ability to hold information in your mind while completing a task, while differences in time management can make it difficult to judge how long something will take or keep track of time.

Strategies such as visual schedules, written instructions, reminders, timers, breaking tasks into smaller steps and having predictable routines can help reduce the amount of information you need to manage at once.

Interoception

Interoception is our ability to notice and understand what is happening inside our body. It can help us recognise sensations such as hunger, thirst, tiredness, pain, temperature, needing the toilet or changes in our heart rate. Some autistic people experience differences in interoception, although this is not unique to autism or ADHD.

If you have lower sensitivity to internal body signals, you might not notice that you are hungry, thirsty, too hot or need the toilet until the sensation becomes very strong. If you have higher sensitivity, small changes in your body may feel very intense, uncomfortable or distracting. Your brain may also notice a physical sensation but find it difficult to work out what it means. For example, you might notice butterflies in your stomach but interpret them as anxiety when you are actually hungry.

Alexithymia

Alexithymia is difficulty identifying, understanding or describing emotions. You might know that something does not feel right without being able to work out exactly what emotion you are experiencing, or find it difficult to put your feelings into words.

Interoception and alexithymia can sometimes overlap because understanding emotions involves noticing and interpreting changes in the body. However, they are different things, and not every autistic person experiences either of them. Learning to notice physical sensations and connecting them with emotions can sometimes help you understand and communicate how you are feeling.

Rejection sensitivity

Some people with ADHD describe experiencing intense emotional responses to perceived or actual rejection, criticism, disapproval or failure. This is sometimes referred to as “rejection sensitivity” or “rejection sensitive dysphoria” (RSD). RSD is not a formal diagnosis or recognised symptom of ADHD. However, rejection sensitivity can be an important experience for some people with ADHD and can also occur alongside other experiences, including anxiety, depression, trauma and autism. Someone experiencing rejection sensitivity might:

  • Feel extremely upset after receiving criticism or feedback.
  • Worry a lot about being disliked or rejected.
  • Avoid situations where they might make a mistake or be judged.
  • Replay conversations and wonder whether they have done something wrong.
  • Feel embarrassed or ashamed after making a mistake.
  • Experience a strong emotional reaction to situations that other people might consider minor.

How to help myself

Getting to know your own needs can make it easier to understand what helps you feel comfortable and manage everyday situations. Notice which sensory experiences feel like too much or not enough for you, such as bright lights, sounds, touch, smells, tastes or certain foods. Your needs may also change depending on the environment, who you are with, how you are feeling and how much energy you have.

It can be helpful to notice your early warning signs when you are becoming stressed, overwhelmed or overstimulated. You might notice changes in your emotions, body, behaviour or communication. If it is difficult to recognise these signs yourself, you could ask people who know you well to help you identify them and work out what support is useful.

Try different ways of making your environment more comfortable. You might use ear defenders, earplugs or noise-cancelling headphones for sounds, sunglasses or a hat for bright light, comfortable clothing without irritating labels or seams, or a fidget, weighted lap pad or weighted blanket if these feel calming for you. Taking movement breaks or having a quiet, comfortable space where you can recharge can also help when you are feeling overwhelmed.

Use things you enjoy to make less enjoyable tasks easier. For example, you could listen to music while tidying, getting dressed or showering. Making time for hobbies and interests can also give you opportunities to relax, recharge and spend time doing things that are meaningful to you.

If you find organisation or remembering things difficult, use external reminders rather than relying on your memory alone. Calendars, planners, phone reminders, alarms and visual prompts can help you keep track of appointments, routines and important tasks. Breaking larger tasks into smaller steps can also make them easier to start and less overwhelming.

Looking after your physical health can support your energy and wellbeing. Try to get enough sleep, eat and drink regularly, and include movement or physical activity that feels enjoyable and manageable. Staying connected with other people can also be helpful. You could spend time with people you already know or use your interests and hobbies as a way to meet people who share similar interests.

How to help a loved one

Work together with your loved one to understand what helps them feel comfortable, safe and supported. You could identify situations or sensory experiences that can become overwhelming and create a plan for what might help when they are struggling. This could include using ear defenders, fidgets, soft textures, a quiet space, movement or physical reassurance such as a hug if they enjoy this. Remember that their needs may change depending on the situation, so ask rather than assuming what will help.

Communication can also make a big difference. Try to be clear and direct about what you are saying, particularly when giving instructions or explaining plans. Listen with curiosity when their experiences are different from your own and check that you have understood what they mean before making assumptions. Give them time to explain themselves, especially if they find it difficult to identify or communicate how they are feeling.

Busy, social or sensory experiences can take a lot of energy. Respect your loved one’s need for breaks and recovery time after situations that have been overwhelming. They may need time alone, a quiet environment or an opportunity to return to familiar routines before they feel ready to socialise or take on other activities.

Create an environment where your loved one feels accepted and comfortable being themselves. Avoid expecting them to hide their natural ways of communicating, regulating or expressing themselves simply to fit in. Support them to explore their personality, preferences, strengths and needs, and involve them in decisions about the support they receive.

Encourage their interests and use them as opportunities to build confidence, motivation and connections with other people. Interests can also be useful when learning feels difficult or overwhelming, as they can provide motivation and help new information feel more meaningful. Where possible, look for ways to connect learning and everyday activities with the things they already enjoy.

Myth Buster

Myth: “Everyone is a little autistic.”
Truth: People may recognise individual autistic traits in themselves, but having one or two traits does not mean that someone is autistic. Autism involves a pattern of lifelong differences in social communication and interaction, alongside restricted or repetitive patterns of behaviour, interests or activities. These differences can have different effects on each person’s everyday life.

Myth: “Stimming is a sign that an autistic person is anxious.”
Truth: Stimming is not only associated with anxiety or distress. Autistic people may stim when they are excited, happy, concentrating, overwhelmed or trying to regulate their emotions or sensory experiences. Stimming can be a natural and helpful way of regulating yourself.

Myth: “Only boys can be autistic.”
Truth: People of all genders can be autistic. Girls, women and people of other genders may be less likely to be recognised or diagnosed because autism can present differently between individuals, and some people may mask their autistic traits.

Myth: “Autism is caused by bad parenting or vaccines.”
Truth: Autism is a neurodevelopmental difference and is not caused by parenting style or vaccines. Research indicates that genetics and other biological and developmental factors contribute to autism. There is no credible evidence that vaccines cause autism.

Support

Some autistic people are diagnosed in childhood, while others are diagnosed later in life or may never receive a diagnosis. People can develop ways of coping or adapting to challenges, which can sometimes make their autistic traits less noticeable to others. Trying to manage environments that do not meet your needs can also be tiring and may require a lot of effort.

A diagnosis does not change who you are, but it can help you understand yourself, recognise your strengths and identify the support or adjustments that may be helpful. Support should be based on your individual needs rather than assuming that all autistic people need the same things.

Support might include exploring how you learn best and what adjustments could make learning easier, as well as developing strategies for planning, organisation, routines and becoming more independent. You may also explore your sensory needs and identify practical ways to manage experiences such as noise, light, touch, tastes or smells that feel overwhelming.

Support can also help you recognise and understand your emotions and the physical signs that you are becoming stressed, worried, overwhelmed, sad or tired. You can explore different ways of communicating, including what works best for you and how the people around you can communicate with you more effectively.

It may also involve building confidence in being yourself, asking for help and communicating your needs. Working with your family, school or other people around you can help create environments where your needs are understood and supported.

Therapy interventions

Autistic people do not need therapy to change who they are. However, talking therapies can be helpful for supporting mental wellbeing, understanding your experiences and developing strategies for managing things that you find difficult. Therapy can also help family members and other people around you understand your needs and how they can support you to feel safe, confident and well.

  • Occupational Therapist (OT) – can help with everyday activities and things that are important to you. They can explore your sensory needs and help you find strategies or adjustments that make everyday environments and activities more comfortable and manageable.
  • Physiotherapist – can support you with movement, strength, balance, coordination and posture. They can help you develop ways to feel more comfortable and confident moving your body and manage any physical difficulties that affect your everyday life.
  • Speech and Language Therapist (SaLT) – can support communication and help you explore how you understand and communicate with other people. This might include finding communication methods that work best for you, such as speech, signing, symbols, pictures or Augmentative and Alternative Communication (AAC) devices.
  • Clinical Psychologist – can support mental wellbeing and difficulties such as anxiety, low mood, stress and relationships. They may use approaches such as Cognitive Behavioural Therapy (CBT), adapted where appropriate to meet your needs.
  • Counsellor – can provide a safe space to talk about emotions, relationships, identity, life changes and things that you find difficult.
  • Dietitian – can support nutritional needs and difficulties with eating, including restricted diets or sensory differences around food.
  • Art, Music or Drama Therapist – can provide different ways to express and explore emotions and experiences, particularly when talking about feelings feels difficult.

You can find information about autism services, including assessment and support services, through the National Autistic Society’s Autism Services Directory. Your GP, school or college can also help you and your family explore what support may be available.

Helplines

National Autistic Society (NAS)

The National Autistic Society (NAS) is a UK-wide charity providing information, guidance and support for autistic people and their families and supporters. Their website includes information about autism, diagnosis, communication, mental wellbeing, education and everyday life, as well as an Autism Services Directory to help you find relevant services and support. They also provide an online community and other opportunities for autistic people and their families to connect with others.

Phone: 020 7833 2299
Email: nas@nas.org.uk
Website: https://www.autism.org.uk/

Ambitious about Autism

Ambitious about Autism is a national charity supporting autistic children and young people, their families and the professionals around them. They provide information and resources about autism, health and wellbeing, education and everyday life, as well as opportunities for autistic young people to develop skills, make connections and access education and employment support. Their services include support and opportunities for autistic young people aged 13–25.

Phone: 020 8815 5444
Email: info@ambitiousaboutautism.org.uk
Website: https://www.ambitiousaboutautism.org.uk/

Childline
Childline is a free service for young people to talk to a counsellor about anything. The service is available 24 hours a day, 7 days a week. Childline is available to anybody who is 18 years old or younger.

Phone: 0800 1111
Opening times: Available 24 hours a day, 7 days a week, 365 days a year
You can also find helpful resources, speak to a counsellor online or send a message on their site.
Website: www.childline.org.uk

For adults concerned about a child, the NSPCC can be contacted 

NSPCC

NSPCC is a children’s charity that works to protect children and prevent abuse and neglect. They provide support and advice for adults about child abuse, neglect, child safety, online safety and children’s mental and emotional wellbeing. 

Phone: 0808 800 5000
Opening times: 10 am–4 pm, Monday–Friday
Email: help@nspcc.org.uk
Email opening times: 11 am–4 pm, 7 days a week
Website: www.nspcc.org.uk

Samaritans

Samaritans is a charity providing emotional support to anyone who is struggling to cope or needs someone to talk to. They are there for people experiencing all sorts of difficulties, including stress, anxiety, loneliness, relationship or family problems, bereavement, feeling overwhelmed and concerns about mental health or suicide.

Phone: 116 123
Opening times: 24 hours a day, 7 days a week, 365 days a year
Website: http://www.samaritans.org