July 2021: This chapter was updated when a link was added to Core Capabilities Framework for Supporting Autistic People published by the Department of Health and Social Care, as above.
Adults with autism may have been diagnosed as a child, or when they are older. Some people may not have been diagnosed at all; this may be because they have not realised they may have autism, may not have wanted support or have not felt able to speak to anyone it.
Many people learn to cope with autism in their own way, although this may not be easy. They may be married or living with a partner, have families or successful careers. Others may become socially isolated, especially if they find it difficult to spend time with family or make friends.
This chapter is a summary of some of the main issues that staff need to know when working with an adult with autism. It also provides additional references and website links.
2. What is Autism?
Autism is a lifelong, developmental disability. It is not an illness or disease. The brain of a person with autism works in a different way from other people.
Autism affects the way a person communicates with and relates to other people and also how they experience the world around them. They see, hear and feel the world in different ways to other people.
The cause of autism is unknown, or if in fact if there is a definite cause. There are approximately 700,000 children and adults in the UK with autism (Autism UK, 2019; whilst people from all nationalities, cultural, religious and social groups can be autistic, more males seem to be affected than females.
Autism is not an illness or disease; it cannot be ‘cured’. It is a life-long condition, and some people feel that being autistic is actually an important part of their identity. Autism may not be visible and therefore can be easily missed (see Working with Adults with Hidden Disabilities chapter).
Autistic people may:
- find it hard to communicate and interact with other people;
- find it hard to understand how other people think or feel;
- find things like bright lights or loud noises overwhelming, stressful or uncomfortable;
- get anxious or upset about unfamiliar situations and social events;
- take longer to understand information;
- do or think the same things over and over.
Some people with autism have average or above average intelligence, a learning disability , mental health issues or other conditions (see Section 4, Other Conditions below), which will mean they need different levels of support.
All people on the autism spectrum can learn and develop. With the right type of support, people can live more satisfying lives.
3. The Autism Spectrum
Autism is a spectrum condition; there is a wide variation in the type and severity of symptoms that people can experience. All autistic people share certain difficulties, but it affects them in different ways.
These differences, along with variations in the way autism is diagnosed by professionals, has resulted in different terms for the range of conditions on the spectrum.
- autism spectrum disorder (ASD);
- autism spectrum condition (ASC);
- atypical autism;
- classic autism;
- Kanner autism;
- pervasive developmental disorder (PDD);
- high-functioning autism (HFA);,
- Asperger syndrome; and
- pathological demand avoidance (PDA).
‘Autism spectrum disorder’ (ASD) is now a commonly used term. However, professionals may still often use other terms, such as those above, to describe the particular type of autism which a person has.
4. Other Conditions
Other conditions that can also affect adults with autism include:
- Attention deficit hyperactivity disorder (ADHD);
- dyslexia and dyspraxia;
- problems sleeping (insomnia);
- mental health problems;
- learning disabilities;
- problems with joints and other parts of the body, including:
- flexible or painful joints;
- skin that stretches or bruises easily;
- diarrhoea or constipation.
For more information on these conditions see Other Conditions that affect Autistic People (NHS)
5. Assessment and Diagnosis
If someone thinks they have autism and wants to speak to someone about it, they should make an appointment to see their GP and discuss their concerns.
Autism is not a medical condition that can be treated or cured, but following assessment, some people can benefit from particular types of support and interventions.
They may be referred to a specialist for an autism assessment; see What happens during an autism assessment (NHS).
There are online ‘autism tests’ available, but none of these can guarantee accuracy.
Assessments and care and support plans should be reviewed and revised if it is felt that a person’s condition, or related conditions, are either deteriorating or improving. See also Strengths-Based Approaches, SCIE.
6. Working with Adults with Autism
Autistic people can live a full life; it does not have to stop anyone having a good life. Like everyone else, autistic people have some things they are good at as well as things they find more of a challenge. A strengths-based assessment (see above) should reveal these and be included in the person’s care and support plan, but it is also important to take them into account in all aspects of working with them.
Everyone is different, but there are some common characteristics that staff should bear in mind when communicating and working with someone, whether they already have a diagnosis of autism or it is suspected that they may be autistic.
- Communication: Staff should remember that the person may find it difficult to communicate and interact with other people. Staff should understand that what the person says and how they say it may well be a feature of their condition. They should give the person time to communicate and be calm and considered in their communication with them.
- Understanding: The adult may find it difficult to understand how other people think or feel, therefore staff should remember that they may not be deliberately unfeeling or uncaring, but they are not able consider other people in the way that others do.
- Suitable environment: Staff should ensure that any meeting or intervention with a person with autism should not take place in a noisy and over-stimulating environment. If they meet the person outside the workplace, they should find out from them what type of place they like to go, that is manageable for them and does not cause them additional stress.
- Anxiety: People with autism can get anxious or stressed about unfamiliar situations and social events. Staff should take this into consideration when working with someone and plan interventions or meetings accordingly.
- Presenting information: Some people with autism may take longer to understand information that is presented to them. Staff should give them additional time to process information and provide it in easy read formats or give other assistance where required. They should also check with the person that they have understood what is being communicated, both at the time and also check their understanding again at later dates.
- Take time: Some people with autism may do or think the same things over and over again. Staff should bear this in mind when working with someone with autism and build additional time into their meetings and visits so that the person does not feel pressured to be quicker than is comfortable for them. Attempts to rush them may result in them feeling stressed which in turn may negatively impact on other behaviours.
- Training: If staff feel they would benefit from more in-depth information or training about working with people with autism, they should speak to their line manager.
7. Further Information
7.1 National organisations and sources
National organisations that provide detailed or further information include:
- National Autistic Society
- Ambitious about Autism
- Life on the Autism Spectrum
- Easy Read Information and Videos (NHS)
- Autism Centre of Excellence
Social media pages dedicated to issues affecting autistic people include
- National Autistic Society Facebook group
- Ambitious about Autism Facebook group
- Actually Autistic for autistic adults
Forums and communities:
7.2 Local support
Support services in a person’s local area should include:
- local support groups (this information should be available from the local autism assessment service);
- the local authority who may carry out a needs assessment with the person;
- the local authority’s information and advice service;
- at college or work – speak to student support services or human resources department;
- search for local groups using:
- the National Autistic Society services directory
- autism support groups on the NHS website