What is Autism?
In line with the policy paper from The national strategy for autistic children, young people and adults: 2021 to 2026 there are around 700,000 children and adults with autism in the UK and, while autism is not a learning disability, around 4 in 10 autistic people have a learning disability (Autistica).
The national strategy states that “Autism is a lifelong developmental disability that affects how people perceive, communicate and interact with others, although it is important to recognise that there are differing opinions on this and not all people with autism see themselves as disabled.”
Autism is a lifelong condition that affects how people think and see the world.
- be very intelligent
- alternatively, find academic learning difficult
- find it difficult to understand others, including not being able to read facial expressions, relate to people’s feelings or behaviour
- have different ways of communicating
- want to follow the same routines and do the same things over and over again
- get distressed if their routines are changed
- focus on their specific interests, sometimes called special interests
- follow the rules closely and pay attention to detail
- be over or under-sensitive to sensory stimuli, such as noise, light, taste
It is important to get terminology right when supporting people with autism, and reflect their preferences. People often prefer to be referred to as autistic rather than a person with autism. Autism also has some other names, such as:
- Autism spectrum disorder (ASD) is the medical name for autism.
- Asperger’s (or Asperger syndrome) is used by some people to describe autistic people with average or above average intelligence (NHS 2022).
- It is also important to remember that Autism is not a learning disability.
There are some great videos that will help you and your team understand what autism means and what you can do to help autistic people you work with or support.
What is autism is a short video that gives the perspective of an autistic person on what autism is and what it means to them.
‘What is Autism’ is an NHS video that provides insight into autism and its potential positive and negative aspects. It’s moving, and we recommend you watch it to the end.
These videos illustrate some of the differences in the way autistic people’s brains work and how some people with autism act in different ways.
Some of the most talented, influential people we know are autistic. For example, Greta Thunberg has Asperger’s, as does Elon Musk, Anthony Hopkins and Chris Packham. Melanie Sykes and Daryl Hannah are autistic, and looking back through history, people like Mozart, Albert Einstein and Alan Turing are thought to have been autistic,
Links with Learning Disabilities
It is estimated that 4 in 10 people with autism also have a diagnosis of a learning disability. A learning disability is a lifelong condition affecting the individual’s ability to learn new information, develop new skills and live independently.
Like autism, a learning disability is different for everyone. Some people have a mild learning disability and take more time to learn and develop skills, whilst other people with a more severe learning disability can have more limited language and ability to develop life skills.
Autism Act 2009
Dame Cheryl Gillan MP, working with autism charities, campaigned for an Autism Act to establish legal duties to provide adult autism services in England. With the support of thousands of autistic people and their families, the Autism Act became law in November 2009.
Following the introduction of the Act, almost every council now has a diagnosis pathway for adults and a specific Autism Lead. Additionally, it makes sure that every autistic person has the right to a social care assessment, something which was difficult for many autistic people before the act was introduced.
Where care providers are working with autistic people it is important to identify the local resources available from the local authority and identify key contacts who may be able to provide support information, advice and signposting.
Supporting People with Autism
Remember people with autism are individuals, with needs and personal traits which are specific to them. In line with regulation 9: Person Centred Care, we need to understand and support the person as an individual, understanding their strengths and needs and asking them how we can best help or support them.
If people have specific communication needs, then the staff and service needs to adapt to meet these needs and support the person e.g. Makaton. Remember that compliance with the Accessible Information Standards is required when delivering NHS or Local Authority contracts, and is important when supporting people with specific communication needs.
Other important regulations include:
- 10: Dignity and respect,
- 11: Consent,
- 12: Safe care and treatment and
- 17: Good governance
- 18: Staffing.
As with all care services, it is a requirement that we provide high-quality, person-centred, safe care and support which enables autistic people to live an ordinary and fulfilling life, just as any other citizen does.
Mandatory Training
The government has introduced mandatory training for learning disability and autism under the Health and Care Act 2022. The training is called The Oliver McGowan Mandatory Training on Learning Disability and Autism.
It is called the Oliver McGowan Mandatory Training following Oliver’s death in hospital in 2016 aged 18 after being given antipsychotic medicines he was allergic to. Oliver was a keen footballer and athlete who was training to become a Paralympian. He was diagnosed with a mild learning disability and autism.
When Oliver became unwell healthcare staff did not listen to Oliver, his parents or other professionals who knew Oliver well and Oliver died following a serious side effect of the antipsychotic medicine. See: Oliver’s Campaign.
All health and social care providers registered with CQC must ensure that their staff receive training in how to interact appropriately with people who have a learning disability and people with autism, at a level appropriate to their role (CQC).
Training is identified in two tiers (it is up to care providers to decide which tier staff need to complete).
- Tier 1 is for all staff who require general awareness of the support autistic people or people with a learning disability might need.
- Tier 2 is for staff who may need to provide care or support for autistic people or people with a learning disability.
- Both tiers include a general awareness e-learning package with tier 1 staff receiving an additional 1 hour online interactive session, and tier 2 staff a 1-day face to face training session.
- Both live learning sessions are co-facilitated by experts by experience.
The government is also developing a Code of Practice and this is in consultation. This will likely be called the Oliver McGowan Code of Practice, and will outline details of the training requirement, including standards providers should follow. These standards will include a focus on people with autism and people with a learning disability when developing and delivering the content.
While this Code of Practice is being developed, CQC recommend that you familiarise yourself with the core capabilities frameworks for supporting people with a learning disability and for supporting autistic people (Skills for Health website). These give examples of what the Code of Practice is likely to require.
Useful Resources
Health Education England – The Oliver McGowan Mandatory Training on Learning Disability and Autism