Autistic adults may have been diagnosed as a child, or when they are older. Some may not have been diagnosed at all; this may be because they do not realise they are autistic, have not have wanted support or have not felt able to speak to anyone about 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 and successful careers. Others may be 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 consider when working with an autistic adult, to help ensure their needs and wishes are identified and taken into account and adjustments are made as required so they can participate fully in decision making. It also provides additional references and website links.
2. What is Autism?
Autism affects how people communicate and interact with the world.
The cause of autism is unknown, or if in fact if there is a definite cause. More than one in 100 people are autistic, and there are around 700,000 autistic adults and children in the UK (National Autistic Society). Whilst people from all nationalities, cultural, religious and social groups and be autistic, more males are diagnosed than females, but this may be a result of under-diagnosis in females.
Autism is not an illness or disease; it cannot be ‘cured’. It is a lifelong condition, and some people feel that being autistic is 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).
All autistic people can learn and develop. Getting the right support and understanding makes a huge difference to autistic people.
3. The Autism Spectrum
See also What is Autism? (National Autistic Society)
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 are affected in different ways.
‘Autism spectrum disorder’ (ASD) or, more simply, autism is the commonly used term.
Autistic people may:
- find it hard to communicate and interact with other people;
- find it hard to understand how other people think or feel, and find it how to say how they feel themselves;
- find it hard to make friends or prefer to be on their own;
- seem blunt, rude or not interested in others without meaning to;
- be highly focused on interests or hobbies;
- be over or under sensitive to light, sound ,taste or touch, finding them stressful or uncomfortable;
- get very anxious or upset which can lead to meltdowns or shutdowns;
- take longer to understand information;
- do or think the same things over and over and feel very anxious if their routine changes, resulting in repetitive and restrictive behaviour.
Autism is not a learning disability, and autistic people can have any level of intelligence. However, autistic people may have other conditions (see Section 4, Other Conditions), which will mean they need different levels of support.
4. Other Conditions
Other conditions that can also affect autistic adults 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 may be autistic and wants to speak to someone about it, they should make an appointment to see their GP. If you think an adult you are supporting may be autistic, the National Autistic Society has advice on how to discuss this with them (see Broaching the Subject).
They may be referred to a specialist for an autism assessment (see What happens during an Autism Assessment, NHS).
An autism diagnosis can be a daunting time, and may come as a shock, but for others it is a relief to find out why they think, feel and act the way they do.
Autism is not a medical condition that can be treated or cured, but following assessment, autistic people can benefit can access appropriate support and interventions, and adjustments can be made to help them stay well and have a good quality of life.
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. In addition, under the Equality Act 2010, services should make changes to the way they are delivered to ensure they are accessible to autistic people and people with other disabilities. The changes are called ‘reasonable adjustments’. Autistic people should always be asked if they require reasonable adjustments, and details of these should be clearly recorded and referred to each time the person accesses the service. Reasonable adjustments should be reviewed to ensure they continue to reflect a person’s circumstances.
6. Working with Autistic Adults
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 Section 5, Assessment and Diagnosis) should reveal these and be included in the person’s care and support plan, alongside any ‘reasonable adjustments’ to the way services will be delivered.
Everyone is different, but there are some common characteristics that staff should consider when communicating and working with an autistic person.
- Personalisation: Make sure the person is at the heat of all decision making, work with them to identify their unique abilities and challenges, and then work alongside them to achieve their (self) identiﬁed needs;
- 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 an autistic person does not take place in a noisy or 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: Autistic people 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: Autistic people 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: Autistic people may do or think the same things over and over again. Staff should bear this in mind when working with autistic people, 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: Training is important, as it helps to ensure that staff have the right skills and knowledge to be able to provide safe, compassionate, and informed care to autistic people. The Health and Care Act 2022 introduced a requirement for regulated service providers to ensure that their staff receive training on learning disability and autism which is appropriate to their role. The Oliver McGowan mandatory training on learning disability and autism is the government’s preferred and recommended training for staff to undertake. The training is delivered in two parts: Tier 1 is for people who require general awareness of the support autistic people and people with a learning disability may need, and Tier 2 is for people who provide care and support to autistic people or people with a learning disability. Both tiers begin with an e-learning session. Employers are responsible for ensuring their staff have the appropriate training for their role, and will advise staff on whether they should complete Tier 1 or Tier 2.
7. Further Information
7.1 National organisations and sources
National organisations that provide detailed or further information include:
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 the human resources department about reasonable adjustments which can be made;
- search for local groups using: