Autism Issued: January 2014 -NICE quality standard 51

guidance.nice.org.uk/qs51

Contents

Introduction………………………………………………………………………………………………………………….. 6

Why this quality standard is needed …………………………………………………………………………………………. 6

How this quality standard supports delivery of outcome frameworks …………………………………………….. 7

Coordinated services ……………………………………………………………………………………………………………… 9

List of quality statements ………………………………………………………………………………………………. 10

Quality statement 1: Diagnostic assessment by an autism team …………………………………………. 11

Quality statement …………………………………………………………………………………………………………………… 11

Rationale ……………………………………………………………………………………………………………………………… 11

Quality measures …………………………………………………………………………………………………………………… 11

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 12

What the quality statement means for service users and carers …………………………………………………… 12

Source guidance ……………………………………………………………………………………………………………………. 12

Definitions of terms used in this quality statement ………………………………………………………………………. 13

Equality and diversity considerations ………………………………………………………………………………………… 16

Quality statement 2: Assessment and diagnosis……………………………………………………………….. 17

Quality statement …………………………………………………………………………………………………………………… 17

Rationale ……………………………………………………………………………………………………………………………… 17

Quality measures …………………………………………………………………………………………………………………… 17

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 18

What the quality statement means for service users and carers …………………………………………………… 18

Source guidance ……………………………………………………………………………………………………………………. 18

Definitions of terms used in this quality statement ………………………………………………………………………. 19

Quality statement 3: Personalised plan ……………………………………………………………………………. 22

Quality statement …………………………………………………………………………………………………………………… 22

Rationale ………………………………………………………………………………………………………………………………. 22

Autism NICE quality standard 51

Quality measures …………………………………………………………………………………………………………………… 22

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 23

What the quality statement means for service users and carers …………………………………………………… 24

Source guidance ……………………………………………………………………………………………………………………. 24

Definitions of terms used in this quality statement ………………………………………………………………………. 24

Quality statement 4: Coordination of care and support ……………………………………………………… 26

Quality statement …………………………………………………………………………………………………………………… 26

Rationale ……………………………………………………………………………………………………………………………… 26

Quality measures …………………………………………………………………………………………………………………… 26

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 27

What the quality statement means for service users and carers …………………………………………………… 27

Source guidance ……………………………………………………………………………………………………………………. 27

Definitions of terms used in this quality statement ………………………………………………………………………. 28

Quality statement 5: Treating the core features of autism: psychosocial interventions……………. 29

Quality statement …………………………………………………………………………………………………………………… 29

Rationale ……………………………………………………………………………………………………………………………… 29

Quality measures ………………………………………………………………………………………………………………….. 29

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 30

What the quality statement means for service users and carers …………………………………………………… 30

Source guidance ……………………………………………………………………………………………………………………. 30

Definitions of terms used in this quality statement ………………………………………………………………………. 31

Quality statement 6: Treating the core features of autism: medication …………………………………. 33

Quality statement …………………………………………………………………………………………………………………… 33

Rationale ……………………………………………………………………………………………………………………………… 33

Quality measures …………………………………………………………………………………………………………………… 33

Autism NICE quality standard 51

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 34

What the quality statement means for service users and carers …………………………………………………… 34

Source guidance ……………………………………………………………………………………………………………………. 34

Definitions of terms used in this quality statement ………………………………………………………………………. 34

Quality statement 7: Assessing possible triggers for behaviour that challenges…………………….. 36

Quality statement …………………………………………………………………………………………………………………… 36

Rationale ………………………………………………………………………………………………………………………………. 36

Quality measures …………………………………………………………………………………………………………………… 36

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 37

What the quality statement means for service users and carers …………………………………………………… 37

Source guidance ……………………………………………………………………………………………………………………. 37

Definitions of terms used in this quality statement ……………………………………………………………………… 38

Quality statement 8: Interventions for behaviour that challenges ………………………………………… 40

Quality statement …………………………………………………………………………………………………………………… 40

Rationale ……………………………………………………………………………………………………………………………… 40

Quality measures …………………………………………………………………………………………………………………… 40

What the quality statement means for service providers, health and social care practitioners, and

commissioners ……………………………………………………………………………………………………………………… 41

What the quality statement means for service users and carers …………………………………………………… 41

Source guidance ……………………………………………………………………………………………………………………. 42

Definitions of terms used in this quality statement ………………………………………………………………………. 42

Using the quality standard ……………………………………………………………………………………………… 44

Quality measures …………………………………………………………………………………………………………………… 44

Levels of achievement ……………………………………………………………………………………………………………. 44

Using other national guidance and policy documents ………………………………………………………………….. 44

Information for commissioners …………………………………………………………………………………………………. 45

Autism NICE quality standard 51

Information for the public…………………………………………………………………………………………………………. 45

Diversity, equality and language……………………………………………………………………………………… 46

Development sources……………………………………………………………………………………………………. 47

Evidence sources…………………………………………………………………………………………………………………… 47

Policy context ……………………………………………………………………………………………………………………….. 47

Definitions and data sources for the quality measures ……………………………………………………………….. 48

Related NICE quality standards ……………………………………………………………………………………… 49

Published………………………………………………………………………………………………………………………………. 49

In development………………………………………………………………………………………………………………………. 49

Future quality standards………………………………………………………………………………………………………….. 49

Quality Standards Advisory Committee and NICE project team …………………………………………. 50

Quality Standards Advisory Committee …………………………………………………………………………………….. 50

NICE project team………………………………………………………………………………………………………………….. 53

About this quality standard …………………………………………………………………………………………….. 54

Autism NICE quality standard 51

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.

Autism NICE quality standard 51

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 highquality

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:

The Adult Social Care Outcomes Framework 2014–15 (Department of Health, November

2012)

NHS Outcomes Framework 2014–15

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

Autism NICE quality standard 51

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

Autism NICE quality standard 51

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 highquality

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.

Autism NICE quality standard 51

List of quality statements

Statement 1. People with possible autism who are referred to an autism team for a diagnostic

assessment have the diagnostic assessment started within 3 months of their referral.

Statement 2. People having a diagnostic assessment for autism are also assessed for coexisting

physical health conditions and mental health problems.

Statement 3. People with autism have a personalised plan that is developed and implemented in

a partnership between them and their family and carers (if appropriate) and the autism team.

Statement 4. People with autism are offered a named key worker to coordinate the care and

support detailed in their personalised plan.

Statement 5. People with autism have a documented discussion with a member of the autism

team about opportunities to take part in age-appropriate psychosocial interventions to help

address the core features of autism.

Statement 6. People with autism are not prescribed medication to address the core features of

autism.

Statement 7. People with autism who develop behaviour that challenges are assessed for

possible triggers, including physical health conditions, mental health problems and environmental

factors.

Statement 8. People with autism and behaviour that challenges are not offered antipsychotic

medication for the behaviour unless it is being considered because psychosocial or other

interventions are insufficient or cannot be delivered because of the severity of the behaviour.

Autism NICE quality standard 51

Quality statement 1: Diagnostic assessment by an autism

team

Quality statement

People with possible autism who are referred to an autism team for a diagnostic assessment

have the diagnostic assessment started within 3 months of their referral.

Rationale

There are several different routes by which someone with possible autism can be referred to an

autism team for a diagnostic assessment. It is important that the assessment is conducted as

soon as possible so that appropriate health and social care interventions, advice and support can

be offered.

Quality measures

Structure

Evidence of local arrangements to ensure that people with possible autism referred for a

diagnostic assessment by an autism team have the assessment started within 3 months of their

referral.

Data source: Local data collection.

Process

Proportion of people with possible autism referred to an autism team for a diagnostic assessment

who have the assessment started within 3 months of their referral.

Numerator – the number of people in the denominator who have a diagnostic assessment

started within 3 months of referral to the autism team.

Denominator – the number of people with possible autism referred to an autism team for a

diagnostic assessment.

Autism NICE quality standard 51

Data source: Local data collection. NICE clinical audit support tool: Autism: recognition, referral

and diagnosis of children and young people on the autism spectrum, criterion 1 states that

autism diagnostic assessments should start within 3 months of the referral to the autism team.

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that they are part of a transparent diagnostic pathway for autism, and

that people with possible autism who are referred to an autism team for a diagnostic assessment

have the assessment started within 3 months of their referral.

Health and social care practitioners working within an autism team ensure that people with

possible autism who are referred for a diagnostic assessment have the assessment started

within 3 months of their referral.

Commissioners should work with local health, social care and education partners to

commission an autism diagnostic pathway that includes provisions for people referred for a

diagnostic assessment by an autism team to have the assessment started within 3 months of

their referral.

What the quality statement means for service users and

carers

People who are referred for an assessment because they may have autism are seen by a

specialist autism team and have their assessment started within 3 months.

Source guidance

Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum (NICE clinical guideline 128), recommendation 1.5.1

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendation 1.2.5

Autism NICE quality standard 51

Definitions of terms used in this quality statement

Autism team

The team conducting the assessment for children, young people or adults should be a specialist

integrated autism team with age-appropriate expertise, and should be part of the local autism

diagnostic pathway (as required by the Autism Act 2009).

Children and young people

The core staff of the autism team for children and young people should include:

paediatricians and/or child and adolescent psychiatrists

speech and language therapists

clinical and/or educational psychologists.

The autism team should either include or have regular access to:

paediatricians or paediatric neurologists

child and adolescent psychiatrists

clinical and educational psychologists

occupational therapists

other professionals who may assist with the assessment, for example specialist health

visitors or nurses, specialist teachers or social workers.

[Adapted from Autism: recognition, referral and diagnosis of children and young people on the

autism spectrum (NICE clinical guideline 128), recommendations 1.1.3 and 1.1.4]

Adults

A local adult autism team should include:

clinical psychologists

Autism NICE quality standard 51

primary care services

nurses

occupational therapists

psychiatrists

social workers

speech and language therapists

support staff (for example, to support access to housing, educational and employment

services, financial advice, and personal and community safety skills).

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism

spectrum (clinical guideline 142), recommendation 1.1.13]

Diagnostic assessment

This definition describes the autism diagnostic assessment for people who the autism team

decide need an assessment. Some people who are referred for assessment will not receive a

diagnostic assessment if the team’s initial review of the referral suggests that the person does

not have autism. For these people the autism team will either refer the person to another service

and/or inform the practitioner who made the initial referral.

Children and young people

The following should be included in every autism diagnostic assessment for children and young

people:

Detailed questions about parents or carers’ concerns and, if appropriate, the child or young

person’s concerns.

Details of the child or young person’s experiences of home life, education and social care.

A developmental history, focusing on developmental and behavioural features consistent

with the International Statistical Classification of Diseases and Related Health Problems

(ICD-10) and the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition

(DSM-5) criteria (consider using an autism-specific tool to gather this information).

Autism NICE quality standard 51

Assessment (by interacting with and observing the child or young person) of social and

communication skills and repetitive and stereotyped behaviours, including sensory

sensitivities, focusing on features consistent with the ICD-10 or DSM-5 criteria (consider

using an autism-specific tool to gather this information).

A medical history, including prenatal, perinatal and family history, and past and current

health conditions.

A physical examination.

Consideration of the differential diagnoses (see NICE clinical guideline 128,

recommendation 1.5.7).

Systematic assessment for conditions that may coexist with autism (see NICE clinical

guideline 128, recommendation 1.5.15).

Developing a profile of the child or young person’s strengths, skills, impairments and needs,

including: intellectual ability and learning style, academic skills, speech, language and

communication, fine and gross motor skills, adaptive behaviour (including self-help skills),

mental and emotional health (including self-esteem), physical health and nutrition, sensory

sensitivities, and behaviour likely to affect day-to-day functioning and social participation.

This profile can be used to create a personalised plan, taking into account family and

educational context. The assessment findings should be communicated to the parent or

carer and, if appropriate, the child or young person.

[Adapted from Autism: recognition, referral and diagnosis of children and young people on the

autism spectrum (NICE clinical guideline 128), recommendations 1.4.1–8, 1.5.5 and 1.5.8]

Adults

During a comprehensive diagnostic assessment, enquire about and assess:

core autism signs and symptoms (difficulties in social interaction and communication,

stereotypic behaviour, resistance to change or restricted interests, and also strengths) that

were present in childhood and have continued into adulthood

early developmental history, if possible

behavioural problems

Autism NICE quality standard 51

functioning at home and in the community (for example, in education or in employment)

past and current physical and mental health problems

other neurodevelopmental conditions

hyper- and hypo-sensory sensitivities.

Carry out direct observation of core autism signs and symptoms, especially in social situations.

Include observation of risk behaviours and safeguarding issues.

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism

spectrum (NICE clinical guideline 142), recommendations 1.2.5–7 and 1.2.12]

Equality and diversity considerations

If the local autism team does not have the expertise to carry out an assessment, or in complex

situations, a person may need to be referred to the regional (national specialist) team.

If a person does not have access to a specialist autism team near their homes, and has difficulty

travelling long distances (because of the financial cost or other reasons), support may be needed

to help them access the service.

Autism NICE quality standard 51

Quality statement 2: Assessment and diagnosis

Quality statement

People having a diagnostic assessment for autism are also assessed for coexisting physical

health conditions and mental health problems.

Rationale

People with autism may have coexisting physical health conditions and/or mental health

problems that, if unrecognised and untreated, will further impair the person’s psychosocial

functioning and could place additional pressure on families and carers. Because of their social

communication difficulties, some people with autism may find it particularly difficult to

communicate their needs and to access mainstream health and social care services.

Quality measures

Structure

Evidence of local arrangements to ensure that people having a diagnostic assessment for autism

are also assessed for coexisting physical health conditions and mental health problems.

Data source: Local data collection.

Process

The proportion of people having a diagnostic assessment for autism who are also assessed for

coexisting physical health conditions and mental health problems.

Numerator – The number of people in the denominator who have an assessment for coexisting

physical health conditions and mental health problems.

Denominator – The number of people having a diagnostic assessment for autism.

Data source: Local data collection.

Autism NICE quality standard 51

Outcome

Reduced morbidity from unidentified physical health conditions and mental health problems that

affect the psychosocial functioning of the person with autism.

Data source: Local data collection.

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that there is sufficient provision of staff with suitable experience to

ensure that people having a diagnostic assessment for autism are also assessed for coexisting

physical health conditions and mental health problems.

Health and social care practitioners ensure that people having a diagnostic assessment for

autism are also assessed for coexisting physical health conditions and mental health problems,

and that any findings are shared with the person and their family and carers (if appropriate) and

are taken into account in the agreed personalised plan (see quality statement 3).

Commissioners commission services in which people having a diagnostic assessment for

autism are also assessed for coexisting physical health conditions and mental health problems.

What the quality statement means for service users and

carers

People who are having an assessment because they may have autism are also assessed to

see if they have any other physical health conditions and/or mental health problems. If any other

conditions are found the person is told about these.

Source guidance

Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum (NICE clinical guideline 128), recommendation 1.5.15

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendation 1.2.10

Autism NICE quality standard 51

Definitions of terms used in this quality statement

Assessment for coexisting physical health conditions and mental health

problems

Note that if an autism team does not have the relevant expertise to conduct these assessments,

the child, young person or adult should be referred to services that can conduct the assessment.

Children and young people

The assessment could include the following:

Mental health and behavioural problems and disorders:

attention deficit hyperactivity disorder (ADHD)

anxiety disorders and phobias

mood disorders

oppositional defiant behaviour

tics or Tourette’s syndrome

obsessive–compulsive disorder

self-injurious behaviour.

Neurodevelopmental problems and disorders:

global delay or intellectual disability

motor coordination problems or developmental coordination disorder

academic learning problems, for example with literacy or numeracy

speech and language disorders.

Medical or genetic problems and disorders:

epilepsy and epileptic encephalopathy

Autism NICE quality standard 51

chromosome disorders

genetic abnormalities, including fragile X

tuberous sclerosis

muscular dystrophy

neurofibromatosis type 1.

Functional problems and disorders:

feeding problems, including restricted diets

urinary incontinence or enuresis

constipation, altered bowel habit, faecal incontinence or encopresis

sleep disturbances

vision or hearing impairment.

[Adapted from Autism: recognition, referral and diagnosis of children and young people on the

autism spectrum (NICE clinical guideline 128), recommendation 1.5.15]

Adults

The assessment could include the following:

other neurodevelopmental conditions (use formal assessment tools for learning disabilities)

mental health problems (for example, schizophrenia, depression or other mood disorders,

and anxiety disorders – in particular, social anxiety disorder, obsessive–compulsive disorder

and eating disorders)

neurological disorders (for example, epilepsy or processing problems)

physical health conditions

communication difficulties (for example, speech and language problems, and selective

mutism)

Autism NICE quality standard 51

hyper- and hypo-sensory sensitivities.

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism

spectrum (NICE clinical guideline 142), recommendation 1.2.10]

Autism NICE quality standard 51

Quality statement 3: Personalised plan

Quality statement

People with autism have a personalised plan that is developed and implemented in a partnership

between them and their family and carers (if appropriate) and the autism team.

Rationale

The needs of people with autism are varied, with some people needing complex levels of support

from a range of professionals and some people not wanting or needing any ongoing support. A

personalised plan that is informed by the full diagnostic assessment and the individual needs of

the person with autism, and recognises their strengths, should ensure that the support provided

is coordinated and focused on the person’s needs and the best possible outcomes for them. The

personalised plan will need to be updated and reviewed as the person’s needs and

circumstances change. It will also need to take into account, inform and be consistent with any

other plans or care packages they may have, including Education, Health and Care plans for

children and Community Care Assessments for adults.

Quality measures

Structure

Evidence of local arrangements to ensure that people with autism have a personalised plan that

is developed and implemented in a partnership between them and their family and carers (if

appropriate) and the autism team.

Data source: Local data collection.

Process

a) The proportion of people with autism who have a personalised plan that is developed in a

partnership between them and their family and carers (if appropriate) and the autism team.

Autism NICE quality standard 51

Numerator – The number of people in the denominator who have a personalised plan that is

developed in a partnership between them and their family and carers (if appropriate) and the

autism team.

Denominator – The number of people diagnosed with autism.

Data source: Local data collection.

b) The proportion of people with autism who have their personalised plan implemented in a

partnership between them and their family and carers (if appropriate) and the autism team.

Numerator – the number of people in the denominator who have their personalised plan

implemented in a partnership between them and their family and carers (if appropriate) and the

autism team.

Denominator – the number of people with autism who have a personalised plan developed.

Data source: Local data collection

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that when a person is diagnosed with autism, the autism team works

in partnership with them and (if appropriate) their family and carers to develop and implement a

personalised plan that takes into account and is consistent with any other plans or packages of

care they may have.

Health and social care practitioners ensure that they work in partnership with people

diagnosed with autism and (if appropriate) their family and carers to develop and implement a

personalised plan.

Commissioners from across health, social care and education agencies work together to

commission services in which, when a person is diagnosed with autism, the autism team works

in partnership with the person and (if appropriate) their family and carers to develop and

implement a personalised plan.

Autism NICE quality standard 51

What the quality statement means for service users and

carers

People with autism and (if appropriate) their family and carers have the opportunity to work

together with their autism team to develop and implement a personalised plan that sets out what

support they need and how best that support should be provided.

Source guidance

Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum (NICE clinical guideline 128), recommendations 1.5.5 (key priority for

implementation) and 1.5.8

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendation 1.2.13

Improving access to social care for adults with autism (SCIE guide 43), Personalising

services section, page 37

Definitions of terms used in this quality statement

Personalised plan

A personalised plan should be based on an assessment of needs, taking into account the

person’s strengths, skills, mental and physical impairment, family and social context, and for

children and young people their educational context. The plan should cover:

any post-diagnostic support that the person and their family and carers need

what interventions, support and timescales are most appropriate for the person; these

include clinical interventions and social support, such as support in relation to education,

employment or housing

preventative action to address triggers that may provoke behaviour that challenges

any further interventions for identified coexisting conditions.

Autism NICE quality standard 51

The plan should also include a risk management plan for people with behaviour that challenges

or complex needs. For young people under 18 years the plan should also include managing the

transition from child to adult services.

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism

spectrum (NICE clinical guideline 142), recommendations 1.2.12 and 1.2.13; and Autism: the

management and support of children and young people on the autism spectrum (NICE clinical

guideline 170), recommendation 1.4.2]

Autism NICE quality standard 51

Quality statement 4: Coordination of care and support

Quality statement

People with autism are offered a named key worker to coordinate the care and support detailed

in their personalised plan.

Rationale

People with autism have broad and varied needs, and their care can involve services from a

number of providers. People with autism will need different levels of care and support, as

detailed in their personalised plan, and a named key worker can help to ensure that they receive

an integrated package of care. If a young person or adult, or a parent or carer on behalf of a

younger child, accepts the offer of a named key worker to help coordinate their care, they should

be involved in the decision about which professional is the most appropriate to provide that

support.

Quality measures

Structure

Evidence of local arrangements for people with autism to be offered a named key worker to

coordinate the care and support detailed in their personalised plan

Data source: Local data collection.

Process

The proportion of people with autism who are having the care and support detailed in their

personalised plan coordinated by a named key worker.

Numerator – The number of people in the denominator who are having their care and support

coordinated by a named key worker.

Denominator – The number of people with autism with an agreed personalised plan.

Autism NICE quality standard 51

Data source: Local data collection.

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that they have sufficient staffing capacity and protocols in place with

local partners to offer all people with autism a named key worker to coordinate the care and

support detailed in their personalised plan.

Health and social care practitioners ensure that they offer all people with autism a named key

worker to coordinate the care and support detailed in their personalised plan.

Commissioners from across health, social care and education agencies commission services in

which all people with autism are offered a named key worker to coordinate the care and support

detailed in their personalised plan.

What the quality statement means for service users and

carers

People with autism are offered the chance to have a named ‘key worker’ – that is, a health or

social care practitioner who will coordinate the care and support that is set out in their

personalised plan. If they agree to having a named key worker, they are involved in deciding who

that person will be.

Source guidance

Autism: the management and support of children and young people on the autism spectrum

(NICE clinical guideline 170), recommendation 1.1.4

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendation 1.8.10

Autism NICE quality standard 51

Definitions of terms used in this quality statement

Named key worker

For children and young people with autism, the named key worker may be a member of the

autism team, or someone from local community services identified by the autism team and the

child or young person and their family and carers as being suitable to coordinate their care and

support. Adults receiving care from the autism team should also have a named key worker. For

adults not receiving care from the autism team, mental health or learning disability services, the

key worker could be a member of the primary healthcare team.

Once someone has been diagnosed with autism, a named key worker should ensure that the

person’s personalised plan is implemented and reviewed as their circumstances and needs

change. This should include ongoing responsiveness to changing needs, and in particular

supporting the transition for young people as they move to secondary school, approach young

adulthood and move from child to adult services.

[Adapted from Autism: the management and support of children and young people on the autism

spectrum (NICE clinical guideline 170), recommendation 1.1.4; and Autism: recognition, referral,

diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142),

recommendation 1.8.7; additional information based on the expert opinion of specialist

committee members]

Autism NICE quality standard 51

Quality statement 5: Treating the core features of autism:

psychosocial interventions

Quality statement

People with autism have a documented discussion with a member of the autism team about

opportunities to take part in age-appropriate psychosocial interventions to help address the core

features of autism.

Rationale

Psychosocial interventions should be considered for people with autism and their families and

carers, because evidence suggests that they can help in the management of the core features of

autism for some people. Different types of psychosocial interventions should be considered,

depending on the age and needs of the person. Current practice suggests that the availability of

psychosocial interventions for people with autism is variable.

Quality measures

Structure

Evidence of local arrangements to ensure that all people with autism have a documented

discussion with a member of the autism team about opportunities to take part in age-appropriate

psychosocial interventions to help address the core features of autism.

Data source: Local data collection

Process

The proportion of people with autism who have a documented discussion with a member of the

autism team about opportunities to take part in age-appropriate psychosocial interventions to

help address the core features of autism.

Numerator – the number of people in the denominator who have a documented discussion with a

member of the autism team about opportunities to take part in age-appropriate psychosocial

interventions to help address the core features of autism.

Autism NICE quality standard 51

Denominator – the number of people with autism.

Data source: Local data collection

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that there is sufficient availability of the appropriate psychosocial

interventions for staff to be able to offer people with autism the opportunity to take part in

psychosocial interventions to help address the core features of autism

Health and social care practitioners ensure that they have documented discussions with

people who have autism about age-appropriate psychosocial interventions to help address the

core features of autism.

Commissioners work with providers to ensure that age-appropriate psychological interventions

to help address the core features of autism are available for people with autism.

What the quality statement means for service users and

carers

People with autism and (if appropriate) their families and carers have a discussion with

members of the autism team (or other health or social care practitioners) about whether they

would benefit from taking part in activities to help them with the main signs of autism. For

children these activities could include play-based learning and improving social skills. For adults

they could include leisure activities, improving social skills, and help with day-to-day activities

and with getting a job.

Source guidance

Autism: the management and support of children and young people on the autism spectrum

(NICE clinical guideline 170), recommendation 1.3.1

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendations 1.4.1–12

Autism NICE quality standard 51

Definitions of terms used in this quality statement

Psychosocial interventions for children and young people

This describes social-communication interventions to address the core features of autism in

children and young people, based on recommendation 1.3.1 in NICE clinical guideline 170,

including play-based strategies with parents, carers and teachers to increase joint attention,

engagement and reciprocal communication in the child or young person. Strategies should:

be adjusted to the child or young person’s developmental level

aim to increase the parents, carers, teachers or peers’ understanding of, and sensitivity and

responsiveness to, the child or young person’s patterns of communication and interaction

include techniques of therapist modelling and video-interaction feedback

include techniques to expand the child or young person’s communication, interactive play

and social routines.

The intervention should be delivered by a trained professional. For pre-school children consider

parent, carer or teacher mediation. For school-aged children consider peer mediation.

Psychosocial interventions for adults

The most appropriate psychosocial interventions for adults with autism should be identified

based on the person’s specific needs. The decision-making process should be based on

recommendations 1.3.1–5 in NICE clinical guideline 142. Recommendations 1.4.1–12 in NICE

clinical guideline 142 describe the different types of psychosocial interventions and how they

should be delivered.

Core features of autism

The core features of autism are described as qualitative differences and impairments in

reciprocal social interaction and social communication, combined with restricted and stereotyped

interests and activities, and rigid and repetitive behaviours.

[Adapted from Autism: The management and support of children and young people on the

autism spectrum (NICE clinical guideline 170), recommendation 1.3.1; and Autism: recognition,

Autism NICE quality standard 51

referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline

142), recommendations 1.4.1–1.4.12]

Autism NICE quality standard 51

Quality statement 6: Treating the core features of autism:

medication

Quality statement

People with autism are not prescribed medication to address the core features of autism.

Rationale

Drug treatments have been shown to be ineffective in addressing the core features of autism.

They also carry significant potential risks.

Quality measures

Structure

Evidence of local arrangements to ensure that people with autism are not prescribed medication

to address the core features of autism.

Data source: Local data collection.

Process

The proportion of people with autism who are prescribed medication to address the core features

of autism.

Numerator – The number of people in the denominator who are prescribed medication to

address the core features of their autism.

Denominator – The number of people with autism.

Data source: Local data collection. NICE clinical audit tool: Autism in children and young people.

NICE clinical audit tool: Autism in adults: biomedical interventions, includes an audit standard on

the use of biomedical interventions for the core features of autism.

Autism NICE quality standard 51

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers work with their clinical staff to ensure that medication is not prescribed to

address the core features of autism.

Health and social care practitioners ensure that they do not prescribe medication to address

the core features of autism, and consider other treatments such as psychosocial interventions.

Commissioners ensure that they commission services in which staff do not prescribe

medication to address the core features of autism, and that other treatments, such as

psychosocial interventions, are available.

What the quality statement means for service users and

carers

People with autism are not prescribed medication to treat the main signs of autism.

Source guidance

Autism: the management and support of children and young people on the autism spectrum

(NICE clinical guideline 170), recommendation 1.3.2

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendations 1.4.13, 1.4.16, 1.4.21 and 1.4.22

Definitions of terms used in this quality statement

Medication not recommended for the core features of autism

This includes:

antipsychotics

antidepressants

Autism NICE quality standard 51

anticonvulsants

drugs designed to improve cognitive functioning (for example, cholinesterase inhibitors).

It should be noted that statement 8 in this quality standard refers to populations for which, in

certain circumstances, medication may be appropriate for the short-term treatment of challenging

behaviour.

[Adapted from Autism: the management and support of children and young people on the autism

spectrum (NICE clinical guideline 170) recommendation 1.3.2 and Autism: recognition, referral,

diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142),

recommendations 1.4.13, 1.4.16, 1.4.21, and 1.4.22].

Core features of autism

The core features of autism are described as qualitative differences and impairments in

reciprocal social interaction and social communication, combined with restricted and stereotyped

interests and activities, and rigid and repetitive behaviours.

[Adapted from Autism: The management and support of children and young people on the

autism spectrum (NICE clinical guideline 170]

Autism NICE quality standard 51

Quality statement 7: Assessing possible triggers for

behaviour that challenges

Quality statement

People with autism who develop behaviour that challenges are assessed for possible triggers,

including physical health conditions, mental health problems and environmental factors.

Rationale

People with autism can sometimes present with behaviour that is challenging to manage. The

causes of behaviour that challenges for a person with autism can be multifactorial, and can

involve physical health conditions, mental health problems and environmental factors (that is,

relating to the person’s social or physical environment). An assessment should take all these

factors into account, and also consider the risk of harm to the person and others, before

appropriate interventions are agreed for the behaviour and any identified physical health

conditions or mental health problems.

Quality measures

Structure

Evidence of local arrangements to ensure that people with autism who develop behaviour that

challenges are assessed for possible triggers, including physical health conditions, mental health

problems and environmental factors.

Data source: Local data collection.

Process

The proportion of people with autism who develop behaviour that challenges who are assessed

for possible triggers, including physical health conditions, mental health problems and

environmental factors.

Numerator – The number of people in the denominator who are assessed for possible triggers,

including physical health conditions, mental health problems and environmental factors

Autism NICE quality standard 51

Denominator – The number of people with autism who develop behaviour that challenges.

Data source: Local data collection. Included in NICE clinical audit tool: Autism in adults:

challenging behaviour audit standards 1 and 2.

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that there is staffing capacity and capability so that people with autism

who develop behaviour that challenges are assessed for possible triggers, including physical

health conditions, mental health problems and environmental factors.

Health and social care practitioners ensure that people with autism who develop behaviour

that challenges are assessed for possible triggers, including physical health conditions, mental

health problems and environmental factors.

Commissioners work with provider services to ensure that there is sufficient staffing capacity

and capability so that people with autism who develop behaviour that challenges are assessed

for possible triggers, including physical health conditions, mental health problems and

environmental factors.

What the quality statement means for service users and

carers

People with autism who behave in a way that other people find difficult (for example,

becoming very upset or aggressive) have an assessment that looks for possible reasons why

they are behaving in this way. These might include other physical health conditions and/or

mental health problems, or any changes to their environment (for example, at home, school or

work).

Source guidance

Autism: the management and support of children and young people on the autism spectrum

(NICE clinical guideline 170), recommendation 1.4.1 (key priority for implementation), 1.4.2

and 1.4.3

Autism NICE quality standard 51

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendations 1.2.20 and 1.5.1

Definitions of terms used in this quality statement

Behaviour that challenges

This is defined as culturally abnormal behaviour(s) of such an intensity, frequency or duration

that the physical safety of the person or others is likely to be placed in serious jeopardy, or

behaviour which is likely to seriously limit use of, or result in the person being denied access to,

ordinary community facilities.

[Taken from the Challenging Behaviour Foundation: Emerson, E (2001) Challenging Behaviour:

Analysis and intervention in people with learning disabilities. Cambridge: Cambridge University

Press]

Assessment for possible triggers

Children and young people

Assess factors that may increase the risk of behaviour that challenges in routine assessment and

care planning in children and young people with autism. If a child or young person’s behaviour

becomes challenging, reassess factors identified in the care plan and assess for any new factors

that could provoke the behaviour, including:

impairments in communication that may result in difficulty understanding situations or in

expressing needs and wishes

coexisting physical disorders, such as pain or gastrointestinal disorders

coexisting mental health problems, such as anxiety or depression, and other

neurodevelopmental conditions such as ADHD (attention deficit hyperactivity disorder)

the physical environment, such as lighting and noise levels

the social environment, including home, school and leisure activities

changes to routines or personal circumstances

Autism NICE quality standard 51

developmental changes, including puberty

exploitation or abuse by others

inadvertent reinforcement of behaviour that challenges

the absence of predictability and structure.

[Adapted from Autism: the management and support of children and young people on the autism

spectrum (NICE clinical guideline 170), recommendations 1.4.1–3]

Adults

Before starting other interventions for behaviour that challenges, assess for any factors that may

trigger or maintain the behaviour, including:

physical disorders

the social environment (including relationships with family members, partners, carers and

friends)

the physical environment, including sensory factors

coexisting mental disorders (including depression, anxiety disorders and psychosis)

communication problems

changes to routines or personal circumstances.

[Adapted from Autism: recognition, referral, diagnosis and management of adults on the autism

spectrum (NICE clinical guideline 142) recommendation 1.2.20]

Autism NICE quality standard 51

Quality statement 8: Interventions for behaviour that

challenges

Quality statement

People with autism and behaviour that challenges are not offered antipsychotic medication for

the behaviour unless it is being considered because psychosocial or other interventions are

insufficient or cannot be delivered because of the severity of the behaviour.

Rationale

The first-line intervention for behaviour that challenges should be appropriate psychosocial

interventions or interventions to address any identified triggers for that behaviour. In some cases

psychosocial or other interventions are not sufficient on their own, or they cannot be delivered

because of the severity of the behaviour. In this situation a paediatrician or psychiatrist, working

with the person with autism and their family and carers, might consider starting a trial of

antipsychotic medication in an attempt to manage the behaviour that challenges. The

professional should continue to monitor any subsequent use of antipsychotic medication.

Quality measures

Structure

Evidence of local arrangements to monitor the use of antipsychotic medication in people with

autism and behaviour that challenges.

Data source: Local data collection.

Process

The proportion of people with autism and behaviour that challenges having antipsychotic

medication for the treatment of their behaviour that challenges in whom psychosocial

interventions are insufficient or cannot be delivered because of the severity of the behaviour.

Numerator – The number of people in the denominator for whom psychosocial interventions are

insufficient or cannot be delivered because of the severity of the behaviour.

Autism NICE quality standard 51

Denominator – The number of people with autism and behaviour that challenges currently

receiving antipsychotic medication to manage their behaviour that challenges.

Data source: Local data collection. NICE clinical audit tool: Autism in adults: challenging

behaviour, audit standards 3 and 4.

What the quality statement means for service providers,

health and social care practitioners, and commissioners

Service providers ensure that staff working with people with autism and behaviour that

challenges do not offer antipsychotic medication for the person’s behaviour unless it is being

considered because psychosocial or other interventions are insufficient or cannot be delivered

because of the severity of the behaviour.

Health and social care practitioners ensure that they do not offer people with autism and

behaviour that challenges antipsychotic medication for the behaviour unless it is being

considered because psychosocial or other interventions are insufficient or cannot be delivered

because of the severity of the behaviour. If antipsychotic medication is prescribed it should be

monitored by a suitable expert.

Commissioners require providers to monitor the use of antipsychotic medication for the

treatment of behaviour that challenges and look for evidence to ensure that when antipsychotic

medication was prescribed, psychosocial or other interventions had been attempted or

considered but had been insufficient or could not be delivered because of the severity of the

behaviour.

What the quality statement means for service users and

carers

People with autism who behave in a way that other people find difficult should not be

offered medication to treat their behaviour unless other treatments are not helping or cannot be

used, either because of the seriousness of the person’s behaviour or because of the risk to the

person or others.

Autism NICE quality standard 51

Source guidance

Autism: the management and support of children and young people on the autism spectrum

(NICE clinical guideline 170), recommendation 1.4.10 (key priority for implementation)

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum

(NICE clinical guideline 142), recommendations 1.5.6 and 1.5.8

Definitions of terms used in this quality statement

Behaviour that challenges

This is defined as culturally abnormal behaviour(s) of such an intensity, frequency or duration

that the physical safety of the person or others is likely to be placed in serious jeopardy, or

behaviour which is likely to seriously limit use of, or result in the person being denied access to,

ordinary community facilities

[Taken from the Challenging Behaviour Foundation: Emerson E (2001) Challenging Behaviour:

Analysis and intervention in people with learning disabilities. Cambridge: Cambridge University

Press]

Psychosocial interventions

Psychosocial interventions for behaviour that challenges should include:

clearly identified target behaviour(s)

a focus on outcomes that are linked to quality of life

assessment and modification of environmental factors that may contribute to starting or

maintaining the behaviour

a clearly defined intervention strategy

a clear schedule of reinforcement, and capacity to offer reinforcement promptly and

contingently on demonstration of the desired behaviour

a specified timescale to meet intervention goals (to promote modification of intervention

strategies that do not lead to change within a specified time)

Autism NICE quality standard 51

a systematic measure of the target behaviour(s) taken before and after the intervention to

check whether the agreed outcomes are being met

consistent application in all areas of a child or young person’s environment (for example, at

home and at school)

for a child or young person, agreement among parents, carers and professionals in all

settings about how to implement the intervention.

In addition to the above interventions, the assessment of potential triggers for behaviour that

challenges referred to in quality statement 7 should also be carried out before introducing any

treatment.

[Adapted from Autism: the management and support of children and young people on the autism

spectrum (NICE clinical guideline 170), recommendation 1.4.9; and Autism: recognition, referral,

diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142),

recommendation 1.5.6]

Autism NICE quality standard 51

Using the quality standard

Quality measures

The quality measures accompanying the quality statements aim to improve the structure,

process and outcomes of care in areas identified as needing quality improvement. They are not a

new set of targets or mandatory indicators for performance management.

We have indicated if current national indicators exist that could be used to measure the quality

statements. These include indicators developed by the Health and Social Care Information

Centre through its Indicators for Quality Improvement Programme. If there is no national indicator

that could be used to measure a quality statement, the quality measure should form the basis for

audit criteria developed and used locally.

See NICE’s What makes up a NICE quality standard? for further information, including advice on

using quality measures.

Levels of achievement

Expected levels of achievement for quality measures are not specified. Quality standards are

intended to drive up the quality of care, and so achievement levels of 100% should be aspired to

(or 0% if the quality statement states that something should not be done). However, NICE

recognises that this may not always be appropriate in practice, taking account of safety, choice

and professional judgement, and therefore desired levels of achievement should be defined

locally.

Using other national guidance and policy documents

Other national guidance and current policy documents have been referenced during the

development of this quality standard. It is important that the quality standard is considered by

commissioners, providers, health and social care practitioners, patients, service users and carers

alongside the documents listed in Development sources.

Autism NICE quality standard 51

Information for commissioners

NICE has produced support for commissioning that considers the commissioning implications

and potential resource impact of this quality standard. This is available on the NICE website.

Information for the public

NICE has produced information for the public about this quality standard. Patients, service users

and carers can use it to find out about the quality of care they should expect to receive; as a

basis for asking questions about their care, and to help make choices between providers of

social care services.

Autism NICE quality standard 51

Diversity, equality and language

During the development of this quality standard, equality issues have been considered and

equality assessments are available.

Good communication between health and social care practitioners and people with autism, and

their families or carers (if appropriate), is essential. Treatment, care and support, and the

information given about it, should be both age-appropriate and culturally appropriate. It should

also be accessible to people with additional needs such as physical, sensory or learning

disabilities, and to people who do not speak or read English. People with autism, and their

families or carers (if appropriate), should have access to an interpreter or advocate if needed.

Commissioners and providers should aim to achieve the quality standard in their local context, in

light of their duties to have due regard to the need to eliminate unlawful discrimination, advance

equality of opportunity and foster good relations. Nothing in this quality standard should be

interpreted in a way that would be inconsistent with compliance with those duties.

Autism NICE quality standard 51

Development sources

Further explanation of the methodology used can be found in the quality standards process

guide on the NICE website.

Evidence sources

The documents below contain recommendations from NICE guidance or other NICE-accredited

recommendations that were used by the Quality Standards Advisory Committee to develop the

quality standard statements and measures.

Autism: the management and support of children and young people on the autism spectrum.

NICE clinical guideline 170 (2013)

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum.

NICE clinical guideline 142 (2012)

Autism: recognition, referral and diagnosis of children and young people on the autism

spectrum. NICE clinical guideline 128 (2011)

Improving access to social care for adults with autism. Social Care Institute for Excellence

(2011)

Policy context

It is important that the quality standard is considered alongside current policy documents,

including:

Department for Education (2013) Children and Families Bill

Care Quality Commission (2012) Health care for disabled children and young people – a

review of how the health care needs of disabled children and young people are met by the

commissioners and providers of health care in England

Department of Health (2012) Transforming care: a national response to Winterbourne View

Hospital Department of Health review: final report

Autism NICE quality standard 51

Department of Health, National Audit Office (2012) Progress in implementing the 2010 Adult

Autism Strategy

Improving Health and Lives: Learning Disabilities Observatory (2012) Autism Self

Assessment 2011: issues from local authorities

The Information Centre for Health and Social Care (2012) Estimating the prevalence of

autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey

Autism Education Trust (2011) What is good practice in autism education?

Department of Health (2010) Fulfilling and rewarding lives: the strategy for adults with autism

in England

Department for Education (2009) Inclusion development programme: supporting children on

the autism spectrum – guidance for practitioners in the early years foundation stage

HM Government (2009) The National Autism Act

National Autistic Society, British Association of Social Workers (2008) Social care:

assessment of needs for adults with autism

National Autistic Society (2006) Is no news good news? Exploring potential quality indicators

in autism education

Sheffield School of Health & Related Research University of Sheffield (2005) Sheffield

survey of the health and social care needs of adolescents and adults with Asperger

syndrome

Definitions and data sources for the quality measures

Definitions were developed from the stated evidence source recommendations, with input from

specialist committee members if further clarification was needed.

Autism NICE quality standard 51

Related NICE quality standards

Published

Patient experience in adult NHS services. NICE quality standard 15 (2012).

Service user experience in adult mental health. NICE quality standard 14 (2011).

In development

Conduct disorders in children and young people. Publication expected April 2014.

Future quality standards

This quality standard has been developed in the context of all quality standards referred to NICE,

including the following topics scheduled for future development:

Coordinated transition between social care and health care services.

Coordinated transition from children’s to adults’ services for young people with social care

needs.

Autism NICE quality standard 51

Quality Standards Advisory Committee and NICE project

team

Quality Standards Advisory Committee

This quality standard has been developed by Quality Standards Advisory Committee 3:

Membership of this committee is as follows:

Alastair Bradley

GP, Tramways Medical Centre/Academic Unit of Primary Medical Care, University of Sheffield

Jan Dawson

Public Health Nutrition Lead and Registered Dietitian, Manchester City Council

Lisa Edwards

Registered Social Worker

Matthew Fay

GP, Westcliffe Medical Practice, Shipley, West Yorkshire

Malcolm Fisk

Co-Director, Ageing Society Grand Challenge Initiative, Coventry University

Margaret Goose

Lay member

Julia Hickling

Regional Director of Patient information (North), NHS England

Raymond Jankowski

Deputy Director of Public Health, NHS Hertfordshire

Sian Jones

Programme Manager – Commissioning, NHS Bristol

Autism NICE quality standard 51

Geeta Kumar

Clinical Director- Women’s services, BCUHB (East)

Rhian Last

Clinical Lead, Education For Health

Hugh McIntyre

Consultant Physician, East Sussex Healthcare Trust

Neena Modi

Professor of neonatal medicine/Consultant, Chelsea and Westminster NHS Foundation Trust

Ann Nevinson

Lay member

Jane O’Grady

Director of Public Health, Buckinghamshire County Council

Gillian Parker

Professor of Social Policy Research and Director, Social Policy Research Unit, University of York

David Pugh

Independent Consultant (MCA), Gloucestershire County Council

Eve Scott

Head of Safety & Risk, Christie NHS Foundation Trust

Jim Stephenson

Consultant Medical Microbiologist, Epsom and St Helier NHS Trust

Darryl Thompson

Psychosocial Interventions Development Lead, South West Yorkshire Partnership NHS

Foundation Trust

Julia Thompson

Strategic Commissioning Manager, Sheffield City Council

Autism NICE quality standard 51

The following specialist members joined the committee to develop this quality standard:

Gillian Baird

Consultant Developmental Paediatrician, Guy’s and St Thomas’ Trust, London

Tony Charman

Chair in Clinical Child Psychology, Department of Psychology, Institute of Psychiatry, King’s

College, London

Ann Le Couteur

Professor of Child and Adolescent Psychiatry, Institute of Health and Society, Newcastle

University & Northumberland, Tyne and Wear NHS Foundation Trust

Juli Crocombe

Consultant Psychiatrist and Clinical Director, St Andrews Birmingham

Jonathan Green

Professor of Child and Adolescent Psychiatry, University of Manchester and Manchester

Academic Health Sciences Centre

Philip Hanscombe

Expert by experience, Asperger Social Care Team, Hertfordshire County Council

Campbell Main

Lay Member, Autism Somerset

Melissa McAuliffe

Asperger’s Specialist Social Worker, East London NHS Foundation Trust

Chris Mitchell

Team Manager, Nottinghamshire Adults with Asperger’s Team, Nottinghamshire County Council

Sharon Richman

Consultant Community Paediatrician, Ealing Hospital NHS Trust

Autism NICE quality standard 51

Stephen Simpson

Community Learning Disability Nurse, East Wakefield CTLD

Zandrea Stewart

National Lead for Autism, Association of Directors of Adult Social Services

Zoe Thompson

Lay Member, Bright Futures School

NICE project team

Nick Baillie

Associate Director

Shirley Crawshaw

Consultant Clinical Adviser

Michael Mellors

Consultant Social Care Adviser

Rachel Neary

Programme Manager

Daniel Sutcliffe

Technical Adviser

Brian Bennett

Lead Technical Analyst

Esther Clifford

Project Manager

Lee Berry

Coordinator

Autism NICE quality standard 51

About this quality standard

NICE quality standards describe high-priority areas for quality improvement in a defined care or

service area. Each standard consists of a prioritised set of specific, concise and measurable

statements. NICE quality standards draw on existing NICE or NICE-accredited guidance that

provides an underpinning, comprehensive set of recommendations, and are designed to support

the measurement of improvement.

The methods and processes for developing NICE quality standards are described in the quality

standards process guide.

This quality standard has been incorporated into the NICE pathway for autism.

Changes after publication

April 2015: minor maintenance

material can be downloaded for private research and study, and may be reproduced for

educational and not-for-profit purposes. No reproduction by or for commercial organisations, or

for commercial purposes, is allowed without the written permission of NICE.

ISBN: 978-1-4731-0420-4

Autism NICE quality standard 51

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