You can find easy read information about autism on the Leicester Partnership NHS Trust website.
Autism is a type of neurodivergence, which means a difference in the way your brain develops before birth and during childhood. Autistic people are all individual, although many people’s experiences of being autistic are shared and relatable. Most autistic people learn, live and work independently, while others may have learning differences or health conditions that need specialist support. There is no evidence that vaccines or poor parenting cause autism. We currently don’t know why some people are autistic and others aren’t.
Knowing whether someone is autistic can sometimes be difficult, for example if you also have other physical or mental health conditions, or use autistic masking (which can involve hiding your natural behaviours and experiences in order to show an ‘acceptable’ version of yourself to the outside world). Certain groups are also less likely to get a diagnosis of autism, such as people assigned female at birth, people from minoritised ethnic groups and people who don’t show a ‘typical’ way of being autistic.
To be diagnosed as autistic, a professional would look at whether you have grown up with differences in communication, social interaction, behaviour and sensory processing:
Communication and social interaction
Social interaction is complicated. Communication can happen in a huge range of ways and you may struggle in social situations if you are expected to use specific types of communication or follow specific social rules and expectations. Autistic people can experience differences in speech, for example in the amount of speech that you might use. Autistic people sometimes also use less common spoken communication methods (such as echolalia, which involves repeating words, phrases or noises). Some autistic people may have very good speech and language skills but struggle to use their voice in social situations, which is often related to anxiety.
Autistic children and young people can sometimes behave in ways that non-autistic people think is unusual. For example, playing in a repetitive way or alongside (rather than directly with) someone else. Autistic people often have intense interests and can become very interested in a few specific things, finding it difficult to transition away from these things. The benefits of this strong focus can be in-depth knowledge about certain topics, attention to detail and dedication.
Different sensory experiences
Autistic people can show different from ‘typical’ responses to sensory information of all kinds, not just textures, sounds, smells or tastes. For example, some people hear or feel things that non-autistic people usually don’t, such as noise from lights or electricity buzzing in the walls. This can cause differences in how autistic people behave and can sometimes lead others to think that they are ‘behaving badly’. Some autistic people make repetitive flapping, finger-twirling or other body movements, known as ‘stimming’. Stimming is something that everyone does, but it can be more obvious in autistic people. Stimming behaviour can be used for different reasons – some autistic people find stimming calming, while it can help others process information (for example during school lessons).
Autism is not a mental health condition. However, autistic people may struggle with their mental health and wellbeing due to stigma and the pressures of daily life when trying to fit in with non-autistic people.
Autistic children and young people have a higher chance of experiencing a mental health condition, including:
- Getting support
Referral and assessment
If you feel that a diagnosis would be helpful, a first step is to get in touch with your GP.
Often your parents or carers, a GP or someone at your school could refer you to a specialist for an assessment. Assessments for autism are usually carried out by community child teams (also known as community paediatrics or child development centres) or by specialist teams at child and adolescent mental health services (CAMHS).
If you are diagnosed with autism then your professional should give you and your family information to help you understand how autism affects you. They should also give you information about any local or national organisations that provide support or help you to meet other families and autistic people.
Find more information about referrals and local mental health services.
You may also wish to explore the online autistic community, which has a lot of knowledge and support for autistic people. For example:
Local autism teams
Local autism teams are made up of professionals from health, mental health, learning disability, education and social care services. You should be given a case manager or keyworker who will:
- arrange any care you need
- help you and your family to access any communication or sensory support you might need
- help you and your family to manage any behaviours that challenge
- help you to manage any other mental or physical health problems
- support you to develop important skills (e.g., communication and daily living skills)
- help you with education, housing and employment services
- support you to take part in leisure and other activities
- help to support your family, including arranging short breaks and other respite care.
There will be times when you might need more support, for example when you have just been diagnosed with autism or if you are changing school. Your professional should make sure that you have any extra support you need at these times and support you to ask for any changes (e.g., at school) that would help in your daily life.
Your professional should also make sure that you receive any support you need if you also have a mental health condition (e.g., anxiety or depression), physical health problem (e.g., epilepsy), sleep problem or another type of neurodivergence (such as ADHD or Tourette’s syndrome).
If it’s not possible to provide your care locally, you could be referred to regional or national services. This might be because you need very specialist care or the care from your local team isn’t working well for you.
Decisions about your care
The support options listed here include the types of support that your local autism team could help you to access. You should talk to your professional and parents or carers about any types of support you might find helpful. The options here are not intended to ‘treat’ autism and will not be helpful for everyone. Your support should be personalised to you and your specific needs.
You and your parents or carers should be involved in making decisions about the support you receive. Your professional should talk with you about your mental health experiences and how your home and school life affects you. They should also talk with you and your parents or carers about your support options, including support for any mental health conditions or sleep difficulties.
Your professional may also talk with you and your parents or carers about:
- preparing for the future (e.g., your transition to adult services)
- organisations that could provide you with more support (e.g., by helping you to meet others with experience of autism, giving you advice on benefits and rights or giving you information about social support and leisure activities).
- Types of support
You will usually be offered support with:
- your intellectual and emotional development
- understanding your autism and managing everyday life
- adjustments at school or other activities that you take part in
- any other difficulties you might have (e.g. behaviours that challenge or sleep problems).
Once this support is in place, you and your parents or carers may only need support through primary care (e.g. GPs, practice nurses) and your school. If you need support with other difficulties, then you might be referred to specialist services such as CAMHS, a CAMHS-learning disability service or community child health.
Going to appointments
Your professional should help you to feel comfortable at your appointments. For example, it might help to adjust the lighting, have lower noise levels, have appointments at less busy times of day or use visual or written appointment plans. Your professional should talk with you about how you would like to arrange your appointments, for example if you would like longer appointments, shorter and more frequent appointments or if you would like written information before your appointments.
Your professional should support you to use whatever communication method suits you best during your appointments, which might include sign language, word or picture boards.
If you have autism, you might be regularly reviewed in primary care (e.g., through your GP or practice nurse) to check how you are and whether you’re receiving the right level of support.
You and your parents or carers should also be given information about autism and the kinds of support available. This should include:
- how to contact your key worker (if you have one) for advice
- how to request a special educational needs assessment(if you have not had one already) and the support you could have at school – Gov.UK has more information on Special educational needs and disabilities (SEND)
- any benefits you might be entitled to
- how to arrange a carer’s assessment so that your parents or carers can also get support – the NHS website has more information on carers assessments
- how to find more information about autism
- how to manage sleep problems or challenging behaviour
You should have another assessment with specialist services when you are around 14 years old. This will be to plan the support you might need as you get older. If you are diagnosed with autism when you are older than 14, your professional should start thinking about any support you might need as an adult straight away.
Secondary care services
If you need other types of support (e.g., for a mental or physical health condition), then you might be referred to specialist services such as community child health, CAMHS or CAMHS-learning disability services.
Your specialist care team might offer:
- support with your social and communication skills
- support with any other kind of neurodivergence you might have, such as anxiety, attention deficit hyperactivity disorder (ADHD) or oppositional defiant disorder (ODD)
- support with any mental health conditions you might have, such as anxiety or oppositional defiant disorder (ODD)
- treatment for any physical health problems you might have (e.g., epilepsy)
- help with behaviour that challenges if you need more support than your primary care or school professionals can offer.
If you are in contact with secondary care services, you will usually have a key worker who will make sure that everyone is working together to get you the support you need.
Support at school
Your school should support you to learn in ways that are best for you. This could include making changes to communication (such as using alternative communication systems) and supporting social interactions. Autistic children and young people sometimes struggle to communicate in the classroom and it’s important that your teacher makes sure that you have heard and understood any instructions and that you are listened to during lessons. Group work may be very challenging and your teachers may need to support other pupils to enable you to be part of the group and feel that you can safely be yourself.
You can find out more through the National Autistic Society’s Education Rights Helpline.
- Support for your family
Support for your family is important. They should be given information on how to access assessments of their own needs, services that could advise or support them and how to access training that helps them to support you with any specific things you need. This is especially important if your parents or carers need help with your personal, social or emotional care, or if they are helping to deliver your support with professionals.
Help for your family could include:
- personal, social and emotional support
- practical support with your care
- planning in case of emergencies
- short breaks and other respite care
- planning for your future (e.g. your transition to adult services).
Your professional should involve you and your parents or carers in decisions about your care. If you are able to make your own decisions about your care, then your professional should ask you about how you would like your parents or carers to be involved.
- Transitions between services
If you are supported by CAMHS or child health services, you should have another assessment when you are about 14 years old. This is to see if you will still need support when you are an adult. If you do need your support to continue, then your keyworker or case manager should arrange for your support to be changed over from child to adult services. This should happen by the time you are 18 years old.
You and your parents or carers should be involved in planning your transition to adult services. Your professional should give you and your family information about what to expect from adult services and the support they could offer you. Your professional should also talk to you about having a social care assessment when you are 18 years old, to see whether they could offer you any extra support.
Your professionals in child and adult services should work together while you transition to adult services. They should tell you who is in charge of your care and make sure you continue to get the support you need.
You may also transition to another CAMHS service (e.g., if you move house). If this happens, your professional should work with you to make sure that your care can continue smoothly and that your new service has all the information they need.
- Additional support
The below organisations offer autism specific support for children, young people and their families:
- ADHD Foundation: UK charity offering support for those living with ADHD, Autism, Dyslexia, DCD, Dyscalculia, OCD, and Tourette’s Syndrome
- AFC Crisis Messenger: a free, confidential, 24/7 text message support service for anyone who is feeling overwhelmed or is struggling to cope. If you need support, you text AFC to 85258.
- Autism Education Trust: organisation offering free resources for parents and carers of autistic young people Autism NI: organisation supporting autistic people in Northern Ireland
- Autism Wales: organisation supporting autistic people in Wales
- Childline: Childline is there to help anyone under 19 in the UK with any issue they’re going through. Whether it’s something big or small, their trained counsellors are there to support you
- National Autistic Society: organisation supporting autistic people across the UK
- Scottish autism: organisation supporting autistic people in Scotland
- The Mix: support and advice for children and young people under 25
Support outlined on these webpages may not be available in every local area. It’s important that you discuss with your GP or mental health professional the support options available to you. You can also search for services near you on our Youth Wellbeing Directory and find out more about referral processes here.