You can find easy read information about autism on the Leicester Partnership NHS Trust website.
Being autistic means your brain works in a different way to other people’s. It's something you're born with and often appears when you're very young. If you're autistic, you will be autistic for your whole life and you might experience things like:
- finding it hard to communicate and interact with others
- finding it hard to understand how others think or feel
- being over-sensitive or under-sensitive to specific sights, sounds, smells, tastes or textures
- getting anxious or upset about new situations or changes to your routine
- developing intense interests in things and needing to follow specific routines.
Many autistic people prefer to use the term ‘autistic person’, rather than ‘person with autism’ and ‘autism spectrum condition’ (ASC), rather than ‘autism spectrum disorder’ (ASD). Although being autistic can make life harder for some people, some autistic people feel that their ability to look at the world differently can be an advantage and something special.
Autism is a spectrum, which means that it describes a range of ways that some people develop differently to others and that each person will experience autism in a different way. Some autistic girls and women find that ‘typical’ signs of autism don’t reflect their experiences and this can make it more difficult to get a diagnosis. For example, autistic girls and women can sometimes ‘mask’ social and other difficulties very effectively and intense interests can be similar to others their age, so are less likely to be noticed by others. Some autistic people need little or no extra help to manage everyday life, while others need a lot of help from a parent or carer to manage everyday tasks. There is no evidence that vaccines or poor parenting causes autism, we currently don’t know why some people are autistic and others aren’t.
Autism is not a mental health condition, but autistic children and young people are at higher risk of developing other mental health conditions, which include:
- oppositional defiant disorder (ODD)
- attention deficit hyperactivity disorder (ADHD)
- sleep problems
- feeding/eating issues including anorexia nervosa, binge-eating disorder, and bulimia nervosa
- Getting support
Referral and assessment
Autism is sometimes first noticed during primary school, but people can be diagnosed during pre-school, secondary school or as adults. Often parents, a GP or someone at your school could refer you to a specialist for an assessment. Many services suggest that the referral should come from your school because it will be easier to assess you with information about how you are doing at school and with information from your teachers.
You can find more information about referrals here and more information about local mental health services here.
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 your autism affects you. They should also give you information about any local or national organisations that provide support, or that could help you to meet other families and people with experience of autism.
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 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 certain 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.
Your professional should also make sure that you receive any support you need if you have a mental health condition (e.g. anxiety or depression), physical health problem (e.g., epilepsy), sleep problem or another condition (e.g., ADHD).
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
Your professional should talk with you about your experience of autism and how it affects you and your family. They should also talk with you and your parents or carers about your support options.
Your support should be personalised to you, so that you receive help for the specific things you find difficult. You and your parents or carers should be involved in making decisions about the support you receive.
Your professional should 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 meeting others with experience of autism, giving advice on benefits and rights, or giving you information about social support and leisure activities).
You can find more information about how these decisions are made here.
- 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. behaviour that challenges 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 or have appointments at less busy times of day.
Autism can make it more difficult to understand other people, so your professional should make sure that they communicate with you in a way that you understand. Your professional should arrange extra help if you need it, for example if you have sensory difficulties or a learning disability. This includes using things like picture or word cards if you find them helpful.
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
- treatment for any mental health or developmental conditions you might have, such as anxiety, attention deficit hyperactivity disorder (ADHD) 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 for your family
Supporting your family is important and they should be given information on how to access assessments of their own needs, services that could support them, how to get advice and how to access training. This is especially important if your parents or carers need help with your personal, social or emotional care, or 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
Treatments 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 treatment 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.