Introduction

This quality standard covers autism in children, young people and adults, including both health and social care services. For more information see the Autism topic overview.

Why this quality standard is needed

The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours, often with a lifelong impact. In addition to these features, people with autism frequently experience a range of cognitive, learning, language, medical, emotional and behavioural problems. These can include a need for routine and difficulty understanding other people, including their intentions, feelings and perspectives. Approximately 50% of people with autism have an intellectual disability (IQ below 70), and around 70% of people with autism also meet diagnostic criteria for at least 1 other (often unrecognised) physical or mental health problem, such as sleep problems, eating problems, epilepsy, anxiety, depression, problems with attention, dyspraxia, motor coordination problems, sensory sensitivities, self-injurious behaviour and other behaviour that challenges (sometimes aggressive). These problems can substantially affect the person's quality of life, and that of their families or carers, and lead to social vulnerability.

The clinical picture of autism is variable because of differences in the severity of autism itself, the presence of coexisting conditions and the differing levels of cognitive ability, which can range from profound intellectual disability in some people to average or above average intellectual ability in others.

The provision of services for people with autism is varied across England and Wales. The Autism Act (2009) requires each local authority area to develop a local autism strategy for the provision of health and social care services for people with autism (aged 14 years and older). A key role of the strategy is to facilitate the development of services to meet the needs of people with autism, including identifying a local lead to oversee service provision. The NICE guidelines on autism (and the NICE pathway on autism) make similar recommendations. This quality standard should be used alongside the strategy and NICE guidelines, as a tool to inform the commissioning of autism services for children, young people and adults focusing on the key areas for improving the quality of existing services.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measureable quality improvements within a particular area of health or care. They are derived from high-quality guidance, such as that from NICE or other sources accredited by NICE. This quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following 2 outcomes frameworks published by the Department of Health:

Tables 1 and 2 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 The Adult Social Care Outcomes Framework 2014–15

Domain

Overarching and outcome measures

1 Enhancing quality of life for people with care and support needs

1I Proportion of people who use services and their carers, who reported that they had as much social contact as they would like.* (PHOF 1.18)

3 Ensuring that people have a positive experience of care and support

3A Overall satisfaction of people who use services with their care and support

3B Overall satisfaction of carers with social services

3D The proportion of people who use services and carers who find it easy to find information about support

3E (Placeholder) Improving people's experience of integrated care** (NHSOF 4.9)

Alignment across the health and social care system

* Indicator shared with Public Health Outcomes Framework (PHOF)

** Indicator complementary with NHS Outcomes Framework

Table 2 NHS Outcomes Framework 2014–15

Domain

Overarching indicators and improvement areas

2 Enhancing quality of life for people with long‑term conditions

Overarching indicator

2 Enhancing quality of life for people with long‑term conditions

Improvement areas

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition

Improving functional ability in people with long-term conditions

2.2 Employment of people with long-term conditions (ASCOF 1E, PHOF 1.8)

Enhancing quality of life for carers

2.4 Health related quality of life for carers** (ASCOF 1D)

4 Ensuring that people have a positive experience of care

Overarching indicator

4. Ensuring people have a positive experience of care.

Improvement areas

4.7 Patient experience of community mental health services

4.9 People's experience of integrated care** (ASCOF 3E)

Alignment across the health and social care system

* Indicator complementary with the Public Health Outcomes Framework (PHOF)

** Indicator complementary with Adult Social Care Outcomes Framework (ASCOF)

*** Indicator shared with Adult Social Care Outcomes Framework

Coordinated services

The quality standard for autism specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole autism care pathway. A person-centred, integrated approach to providing services is fundamental to delivering high-quality care to people with autism and their families and carers.

The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high-quality services. Other quality standards that should also be considered when choosing, commissioning or providing a high-quality autism service are listed in Related quality standards.

Training and competencies

The quality standard should be read in the context of available national and local guidelines on training and competencies. All health and social care practitioners involved in working with, assessing, caring for and treating people with autism should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. The specialist committee members who contributed to the development of this quality standard emphasised the importance of people with autism being involved in the delivery of training to health, social care and education practitioners.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting people with autism. If appropriate, health and social care practitioners should ensure that family members and carers are involved in the decision-making process about investigations, treatment and care.