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Autism HAI

About

What is covered

This pathway covers the recognition, referral, diagnosis and management of autism in children, young people and adults.
The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours. Here 'autism' refers to 'autism spectrum disorders' encompassing autism, Asperger's syndrome and atypical autism (or pervasive developmental disorder not otherwise specified).
Autism is a lifelong condition that has a great impact on children, young people and adults and their family or carers. Diagnosis and needs assessment can offer an understanding of why a person is different from their peers and can open doors to support and services in education, health services, social care and a route into voluntary organisations and contact with other people and families with similar experiences. All this can improve the lives of people with autism and their families.

Updates

Updates to this pathway

22 July 2014 Link added to constipation pathway
9 May 2014 Minor maintenance update
9 May 2014 Minor maintenance update
21 January 2014 Autism (NICE quality standard 51) added.
2 January 2014 Minor maintenance updates.
27 August 2013 Autism: management in children and young people (NICE clinical guideline 170) added to this pathway.
1 February 2013 Minor maintenance updates.

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Short Text

Recognition, referral, diagnosis and management of children, young people and adults on the autism spectrum

What is covered

This pathway covers the recognition, referral, diagnosis and management of autism in children, young people and adults.
The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours. Here 'autism' refers to 'autism spectrum disorders' encompassing autism, Asperger's syndrome and atypical autism (or pervasive developmental disorder not otherwise specified).
Autism is a lifelong condition that has a great impact on children, young people and adults and their family or carers. Diagnosis and needs assessment can offer an understanding of why a person is different from their peers and can open doors to support and services in education, health services, social care and a route into voluntary organisations and contact with other people and families with similar experiences. All this can improve the lives of people with autism and their families.

Updates

Updates to this pathway

22 July 2014 Link added to constipation pathway
9 May 2014 Minor maintenance update
9 May 2014 Minor maintenance update
21 January 2014 Autism (NICE quality standard 51) added.
2 January 2014 Minor maintenance updates.
27 August 2013 Autism: management in children and young people (NICE clinical guideline 170) added to this pathway.
1 February 2013 Minor maintenance updates.

Sources

NICE guidance

The NICE guidance that was used to create the pathway.
Autism in adults. NICE clinical guideline 142 (2012)
Autism in children and young people. NICE clinical guideline 128 (2011)
Common mental health disorders. NICE clinical guideline 123 (2011)

Quality standards

Quality statements

Diagnostic assessment by an autism team

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.
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

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
  • 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).
  • 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
  • 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.

Assessment and diagnosis

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.
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

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
    • 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)
  • 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]

Personalised plan

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.
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.

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.
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]

Coordination of care and support

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.
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

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]

Treating the core features of autism: psychosocial interventions

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.
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

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, referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142), recommendations 1.4.1–1.4.12]

Treating the core features of autism: medication

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.

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
  • 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.

Assessing possible triggers for behaviour that challenges

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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
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: 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
  • 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]

Interventions for behaviour that challenges

This quality statement is taken from the autism quality standard. The quality standard defines clinical best practice in autism care and should be read in full.

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.
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.

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)
  • 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]

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Commissioning

These resources include support for commissioners to plan for costs and savings of guidance implementation and meeting quality standards where they apply.
These resources will help to inform discussions with providers about the development of services and may include measurement and action planning tools.

Education and learning

NICE produces resources for individual practitioners, teams and those with a role in education to help improve and assess users' knowledge of relevant NICE guidance and its application in practice.

Information for the public

NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on each of the following topics.

Pathway information

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Supporting information

Glossary

Attention deficit hyperactivity disorder
Ideas, such as reinforcement and function of behaviour, that underlie behavioural therapies and underpin many interventions teaching adaptive skills for community living for people with autism, including those with challenging behaviour.
Child and adolescent mental health services.
Systems designed to improve the overall quality of healthcare by standardising the care process and promoting organised efficient service user care based on best evidence to optimise service user outcomes.
Cognitive behavioural therapy.
A term used to describe behaviour that is a result of the interaction between individual and environmental factors, and includes stereotypic behaviour (such as rocking or hand flapping), anger, aggression, self-injury, and disruptive or destructive behaviour. Such behaviour is seen as challenging when it affects the person's or other people's quality of life and or jeopardises their safety.
A procedure that involves using one or more substances (chelating agents) to remove materials that are toxic, including heavy metals such as mercury, from the body.
Care programme approach.
Developmental coordination disorder
Diagnostic and Statistical Manual of Mental Disorders, 4th edition
An accessible format for written communication designed for people with a learning disability. It uses simple jargon-free language, short sentences and illustrations.
A therapeutic intervention whereby a facilitator supports the hand or arm of a person with autism while using a keyboard or other devices with the aim of helping the person to develop pointing skills and to communicate.
A method for understanding the causes and consequences of behaviour and its relationship to particular stimuli, and the function of the behaviour. The function of a particular behaviour can be analysed by typically identifying (1) the precursor or trigger of the behaviour, (2) the behaviour itself, and (3) the consequence of the behaviour.
Being over-sensitive (hyper-sensitive) or under-sensitive (hypo-sensitive) to sound, light, colour, smell or taste, which can cause anxiety or even pain in a person with autism.
A family member, partner, carer or other third party known to the person with autism who is able to provide information about the person's symptoms and behaviour so that professionals can have a fuller picture of the person's developmental history. Some assessment tools for autism require information from informants.
International Statistical Classification of Diseases and Related Health Problems, 10th Revision
Lower intellectual ability (usually defined as an IQ of less than 70) that leads to problems in learning, developing new skills, communication and carrying out daily activities. Learning disability severities are defined by the following IQ scores: mild = 50–69, moderate = 35–49 and severe = 20–34. A person with a mild to moderate learning disability may only need support in certain areas. However, a person with a moderate to severe learning disability may have no speech or limited communication, a significantly reduced ability to learn new skills and require support with daily activities such as dressing and eating. Learning disabilities are different from 'learning difficulties', like dyslexia, which do not affect intellect. Learning disability is sometimes also called 'intellectual disability'.
A technique used in behavioural therapy that utilises video and other media. The service user observes target behaviour on the video or computer screen, and repeats it.
Oppositional defiant disorder
Obsessive compulsive disorder
A technique used in behavioural therapy to teach 'rules' of social engagement through providing prompts for behaviour.

Paths in this pathway

Pathway created: June 2012 Last updated: July 2014

© NICE 2014

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