Surveillance report 2016 – Autism
spectrum disorder in under 19s: supportand management
National Institute for Health and Care
Excellence
Surveillance programme
Surveillance proposal consultation document
Autism spectrum disorder in under 19s: support andmanagement – NICE guideline CG170 4-year
surveillance review
Background information
Guideline issue date: August 2013This guideline has not undergone previous surveillance.

Surveillance proposal for consultation
We will not update the guideline at this time.
We also propose to remove the following NICE research recommendations
from the NICE version of the guideline and the NICE research
recommendations database: What is the value of a key worker approach (defined by protocol anddelivered in addition to usual care) for children and young people with
autism in terms of parental satisfaction, functioning and stress and childpsychopathology?
 Is a sleep hygiene intervention or melatonin clinically and cost effective inthe management of sleep onset, night waking and reduced total sleep inchildren (aged 4–10 years) with autism?
Surveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

1 What is the comparative clinical and cost effectiveness of pharmacologicaland psychosocial interventions for anxiety disorders in children and young
people with autism?
 Are comprehensive early interventions that combine multiple elements andare delivered by parents and teachers (for example, the Learning
Experiences – an Alternative Program for Preschoolers and their Parents[LEAP] model) effective in managing the core symptoms of autism andcoexisting difficulties (such as adaptive behaviour and developmental skills)
in pre-school children?

Reason for the proposal
New evidence
We found 38 new studies in a search for systematic reviews and randomised
controlled trials (RCTs) published between 01 January 2013 and 19 January
2016. We also considered 11 additional studies identified by members of theguideline committee who originally worked on this guideline. From all sources,
49 studies were considered to be relevant to the guideline.
This included new evidence that supports current recommendations on:
 General principles of care (access to health and social care services,knowledge and competence of health and social care professionals,
information and involvement in decision-making) Families and carers
 Specific interventions for the core features of autism
 Interventions for behaviour that challenges
 Interventions for life skills
 Interventions for autism that should not be used
 Interventions for coexisting problems
 Transition to adult services
We asked topic experts whether this new evidence would affect current
recommendations on autism spectrum disorder in under 12s. Generally, thetopic experts thought that an update was not needed. A topic expert
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suggested expanding the wording of recommendation 1.3.1 to include otherpsychosocial strategies to use with older children and young people with
autism. However, it was considered that new evidence from this surveillance
review was unlikely to impact current recommendations suggesting to include
other psychological strategies. There were new studies evaluating the
combination of risperidone with other medications in the treatment of irritability
but most of these medications were not licensed for children or for thetreatment of autism, behaviour that challenges or for coexisting problems.
Furthermore, this new evidence was reported by small studies which areunlikely to be enough evidence to recommend the use of these unlicensed
medications in combination with risperidone.
We did not find any new evidence on:
 General principles of care (organisation and delivery of services, making
adjustments to the social and physical environment and processes of care)No equalities issues were identified during the surveillance process.
Research recommendations
At 4-year and 8-year surveillance reviews of guidelines published after 2011,
we assess progress made against prioritised research recommendations. See
the research recommendations section for further information.
For this surveillance review we assessed 5 prioritised research
recommendations, and proposed that 4 should be removed from the NICE
NICE version of guideline and NICE database.
Overall decision
After considering all the new evidence and views of topic experts, we decided
not to update this guideline.
We also propose removing 4 prioritised research recommendations from the
NICE version of the guideline and the NICE research recommendations
database.
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Further information
See appendix A: summary of new evidence from surveillance below for further
information.
For details of the process and update decisions that are available, seeensuring that published guidelines are current and accurate in ‘Developing
NICE guidelines: the manual’.

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Appendix A summary of new evidence fromsurveillance
Experience of care and the organisation and delivery of care
General principles of care
Access to health and social care services

170 – 01

What services and treatments are effective in providing a positive
experience of care for children and young people with autism and theirfamilies and carers?

Recommendations derived from this question
1.1.1

Ensure that all children and young people with autism have full access to health and social
care services, including mental health services, regardless of their intellectual ability or any
coexisting diagnosis.

1.1.2

The overall configuration and development of local services (including health, mental health,learning disability, education and social care services) for children and young people with
autism, should be coordinated by a local autism multi-agency strategy group (for people with
autism of all ages) in line with Autism in children and young people (covering identificationand diagnosis) (NICE clinical guideline 128) and Autism in adults (NICE clinical guideline
142).

1.1.3

The assessment, management and coordination of care for children and young people with
autism should be provided through local specialist community-based multidisciplinary teams('local autism teams') which should include professionals from health, mental health, learning
disability, education and social care services in line with Autism in children and young people(covering identification and diagnosis) (NICE clinical guideline 128) and Autism in adults(NICE clinical guideline 142).

1.1.4

Local autism teams should ensure that every child or young person diagnosed with autism
has a case manager or key worker to manage and coordinate treatment, care, support andtransition to adult care in line with Autism in children and young people (covering identificationand diagnosis) (NICE clinical guideline 128).

1.1.5

Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:looked-after children and young people
those from immigrant groups
those with regression in skills
those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

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
1.1.6

1.1.7

mental health problems.

Local autism teams should have a key role in the delivery and coordination of:

specialist care and interventions for children and young people with autism, including
those living in specialist residential accommodationadvice, training and support for other health and social care professionals and staff(including in residential and community settings) who may be involved in the care ofchildren and young people with autism

advice and interventions to promote functional adaptive skills including communicationand daily living skills

assessing and managing behaviour that challenges

assessing and managing coexisting conditions



reassessing needs throughout childhood and adolescence, taking particular account oftransition to adult services

supporting access to leisure and enjoyable activities



supporting access to and maintaining contact with educational, housing and employment
servicesproviding support for families (including siblings) and carers, including offering short
breaks and other respite careproducing local protocols for:


information sharing, communication and collaborative working among healthcare,education and social care services, including arrangements for transition to adultservicesshared care arrangements with primary care providers and ensuring that clear lines ofcommunication between primary and secondary care are maintained.

Refer children and young people with autism to a regional or national autism service if there
is a lack of:

local skills and competencies needed to provide interventions and care for a child or
young person with a complex coexisting condition, such as a severe sensory or motor
impairment or mental health problem, or

response to the therapeutic interventions provided by the local autism team.

Surveillance decision
No new information was identified at any surveillance review.
This review question should not be updated.

170 – 02

What are the key problems associated with the experience of care forchildren and young people with autism and their families and carers?

Recommendations derived from this question
No recommendations made in the guideline.

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Surveillance decisionThis review question should not be updated.

4-year surveillance summary
1
A study included 16 families following an
Autism Spectrum Disorders (ASD) diagnosis.
Parents reported difficulties accessing earlyintervention services at the intensity viewed
necessary for optimal child outcomes.
Topic expert feedback
No topic expert feedback was relevant to thisevidence.

170 – 03

Impact statement
New evidence comes from a very small study
which is unlikely to be enough evidence todevelop new recommendations.
This topic will be evaluated again at the next
surveillance review.

New evidence is unlikely to change guideline
recommendations.

For children and young people with autism, and their families andcarers, what would help improve the experience of care?

Recommendations derived from this question
1.1.1

Ensure that all children and young people with autism have full access to health and social
care services, including mental health services, regardless of their intellectual ability or any
coexisting diagnosis.

Surveillance decisionThis review question should not be updated.

4-year surveillance summary
2
A study (n=176 families) reported that parentsof young children with ASD felt that theaccessibility, continuity and flexibility ofservices were the most important determinantsof quality but continuity and accessibility werealso perceived as being the least realised.
Parents were more satisfied with the validity of
information and the flexibility of services thanwith their continuity and accessibility.
Topic expert feedback

No topic expert feedback was relevant to thisevidence.
Impact statement
The evidence is generally consistent withcurrent recommendations which suggest
ensuring full access to health and social careservices.

New evidence is unlikely to change guideline
recommendations.

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Experience of care and the organisation and delivery of care
General principles of care
Knowledge and competence of health and social care professionals
Information and involvement in decision-making

Interventions for life skills

170 – 04

What information and day-to-day support is effective in supportingchildren and young people with autism and their families and carers:

Subquestionin the post-diagnosis period (including genetic advice and advice about investigation forpossible causes of autism including regression)

when treatment and care is provided (including case coordination or case management)at intervention/management plan reviews

during periods of crisisat key transitions (for example, school transitions and transition to adult services)?

Recommendations derived from this question
1.1.8

Health and social care professionals working with children and young people with autism inany setting should receive training in autism awareness and skills in managing autism, whichshould include:the nature and course of autismthe nature and course of behaviour that challenges in children and young people with
autism

recognition of common coexisting conditions, including:

mental health problems such as anxiety and depression

physical health problems such as epilepsysleep problems

other neurodevelopmental conditions such as attention deficit hyperactivity disorder(ADHD)

the importance of key transition points, such as changing schools or health or social careservicesthe child or young person's experience of autism and its impact on them

the impact of autism on the family (including siblings) or carers

the impact of the social and physical environment on the child or young person

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1.1.11

how to assess risk (including self-harm, harm to others, self-neglect, breakdown of familyor residential support, exploitation or abuse by others) and develop a risk managementplanthe changing needs that arise with puberty (including the child or young person's
understanding of intimate relationships and related problems that may occur, for example,
misunderstanding the behaviour of others)

how to provide individualised care and support and ensure a consistent approach is used
across all settingsskills for communicating with a child or young person with autism.

Provide children and young people with autism, and their families and carers, with information
about autism and its management and the support available on an ongoing basis, suitable forthe child or young person's needs and developmental level. This may include:

contact details for local and national organisations that can provide:

support and an opportunity to meet other people, including families or carers, withexperience of autism

information on courses about autism

advice on welfare benefits, rights and entitlements

information about educational and social support and leisure activities

information about services and treatments available

information to help prepare for the future, for example, transition to adult services.

1.1.12Make arrangements to support children and young people with autism and their family andcarers during times of increased need, including major life changes such as puberty, startingor changing schools, or the birth of a sibling.

1.5.1

Offer children and young people with autism support in developing coping strategies andaccessing community services, including developing skills to access public transport,
employment and leisure facilities.

Surveillance decisionThis review question should not be updated.

4-year surveillance summary
3
A study included parents (n= 143) of young
people (aged 2 to 18 years) with ASD. Parents
reported that the most frequent service needs
were information on services, family support,
and respite care. They also reported a positive
view on funding and quality of professional
support available.

Impact statement
The evidence is generally consistent withcurrent recommendations which suggest
providing children and young people with
autism, and their families and carers, withinformation about autism and its management
and the support available on an ongoing basis.

Topic expert feedback
No topic expert feedback was relevant to thisevidence.

New evidence is unlikely to change guideline
recommendations.

Surveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

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General principles of care
Information and involvement in decision-making

170 – 05

What information and day-to-day support do children and young people
with autism and their families and carers want:

Subquestionin the post-diagnosis period

when treatment and care is provided

at intervention/management plan reviews

during periods of crisisat key transitions (for example, school transitions and transition to adult services)?

Recommendations derived from this question
1.1.3

The assessment, management and coordination of care for children and young people with
autism should be provided through local specialist community-based multidisciplinary teams('local autism teams') which should include professionals from health, mental health, learning
disability, education and social care services in line with Autism in children and young people(covering identification and diagnosis) (NICE clinical guideline 128) and Autism in adults(NICE clinical guideline 142).

1.1.11

Provide children and young people with autism, and their families and carers, with information
about autism and its management and the support available on an ongoing basis, suitable forthe child or young person's needs and developmental level. This may include:

contact details for local and national organisations that can provide:

support and an opportunity to meet other people, including families or carers, withexperience of autism

information on courses about autism

advice on welfare benefits, rights and entitlements

information about educational and social support and leisure activities

information about services and treatments available

information to help prepare for the future, for example, transition to adult services.

1.1.12Make arrangements to support children and young people with autism and their family andcarers during times of increased need, including major life changes such as puberty, startingor changing schools, or the birth of a sibling.

1.1.13

Explore with children and young people with autism, and their families and carers, whether
they want to be involved in shared decision-making and continue to explore these issues atregular intervals. If children and young people express interest, offer a collaborative approach
to treatment and care that takes their preferences into account.

Surveillance decision
No new information was identified at any surveillance review.
Surveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

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Experience of care and the organisation and delivery of care
General principles of careOrganisation and delivery of services

170 – 06

What are the essential elements that allow integration acrossservices/agencies for the optimal organisation and delivery of care tochildren and young people with autism and their families and carers?

Recommendations derived from this question
1.1.2

The overall configuration and development of local services (including health, mental health,learning disability, education and social care services) for children and young people with
autism, should be coordinated by a local autism multi-agency strategy group (for people with
autism of all ages) in line with Autism in children and young people (covering identificationand diagnosis) (NICE clinical guideline 128) and Autism in adults (NICE clinical guideline
142).

1.1.3

The assessment, management and coordination of care for children and young people with
autism should be provided through local specialist community-based multidisciplinary teams('local autism teams') which should include professionals from health, mental health, learning
disability, education and social care services in line with Autism in children and young people(covering identification and diagnosis) (NICE clinical guideline 128) and Autism in adults(NICE clinical guideline 142).

1.1.4

Local autism teams should ensure that every child or young person diagnosed with autism
has a case manager or key worker to manage and coordinate treatment, care, support andtransition to adult care in line with Autism in children and young people (covering identificationand diagnosis) (NICE clinical guideline 128).

1.1.5

Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:

1.1.6



looked-after children and young peoplethose from immigrant groups

those with regression in skills



those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

mental health problems.

Local autism teams should have a key role in the delivery and coordination of:

specialist care and interventions for children and young people with autism, including
those living in specialist residential accommodation
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1.1.7advice, training and support for other health and social care professionals and staff(including in residential and community settings) who may be involved in the care ofchildren and young people with autism

advice and interventions to promote functional adaptive skills including communicationand daily living skills

assessing and managing behaviour that challenges

assessing and managing coexisting conditions



reassessing needs throughout childhood and adolescence, taking particular account oftransition to adult services

supporting access to leisure and enjoyable activities



supporting access to and maintaining contact with educational, housing and employment
servicesproviding support for families (including siblings) and carers, including offering short
breaks and other respite careproducing local protocols for:


information sharing, communication and collaborative working among healthcare,education and social care services, including arrangements for transition to adultservicesshared care arrangements with primary care providers and ensuring that clear lines ofcommunication between primary and secondary care are maintained.

Refer children and young people with autism to a regional or national autism service if there
is a lack of:

local skills and competencies needed to provide interventions and care for a child or
young person with a complex coexisting condition, such as a severe sensory or motor
impairment or mental health problem, or

response to the therapeutic interventions provided by the local autism team.

Surveillance decision
No new information was identified at any surveillance review.
This review question should not be updated.

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Experience of care and the organisation and delivery of care
General principles of careOrganisation and delivery of services
Making adjustments to the social and physical environment and processes of care

170 – 07

What alterations need to be made to routine and acute healthcare forchildren and young people with autism to ensure access for those with
autism?

Subquestion
For children and young people with autism, and their families and carers, is the experience of care andthe organisation and delivery of care different for:

looked-after childrenimmigrant groupschildren with regression in skills?

Recommendations derived from this question
1.1.5

1.1.9

1.1.10Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:looked-after children and young peoplethose from immigrant groups

those with regression in skills



those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

mental health problems.

Take into account the physical environment in which children and young people with autism
are supported and cared for. Minimise any negative impact by:providing visual supports, for example, words, pictures or symbols that are meaningful forthe child or young person

making reasonable adjustments or adaptations to the amount of personal space givenconsidering individual sensory sensitivities to lighting, noise levels and the colour of walls
and furnishings.

Make adjustments or adaptations to the processes of health or social care, for example,
arranging appointments at the beginning or end of the day to minimise waiting time, orSurveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

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providing single rooms for children and young people who may need a general anaesthetic in
hospital (for example, for dental treatment).

Surveillance decision
No new information was identified at any surveillance review.
This review question should not be updated.

170 – 08

What are the effective ways of monitoring progress in children andyoung people with autism?

Recommendations derived from this question
No recommendations made in the guideline

Surveillance decision
No new information was identified at any surveillance review.
This review question should not be updated.

Interventions aimed at improving the impact on the family
Families and carers

170 – 09

For children and young people with autism, what are the benefits ofpsychosocial, pharmacological or biomedical interventions for
improving the impact on the family* when compared with alternative
management strategies?

* Subgroup analyses will examine and compare treatment effects on the impact for the family when the interventions
are specifically aimed at improving the impact on the family (direct outcomes) and when the primary target of theintervention was another outcome but effects on the family are examined (indirect outcomes) on coexisting problems
or disorders are examined (indirect outcomes).

Subquestions
For children and young people with autism, and their families and carers, is the engagement with oreffectiveness of interventions aimed at improving the impact on the family different for:

looked after children?

immigrant groups?

children with regression in skills?

For children and young people with autism is the effectiveness of interventions aimed at improving theimpact on the family moderated by:

the nature and severity of the condition?

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the presence of coexisting conditions (including, mental and behaviour,neurodevelopmental, medical or genetic, and functional, problems and disorders)?



age?



gender?



the presence of sensory differences?



IQ?



language level?

family/carer contextual factors (for example, socioeconomic status, parental education,
parental mental health, sibling with special education needs)?

For children and young people with autism is the effectiveness of interventions aimed at improving theimpact on the family mediated by:

the intensity of the intervention?

the duration of the intervention?

the length of follow-up?

programme components?

Recommendations derived from this question
1.1.5

1.2.1

1.2.2

1.2.3

Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:looked-after children and young peoplethose from immigrant groups

those with regression in skills



those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

mental health problems.

Offer all families (including siblings) and carers verbal and written information about their rightto:

short breaks and other respite carea formal carer's assessment of their own physical and mental health needs, and how toaccess these.

Offer families (including siblings) and carers an assessment of their own needs, including
whether they have:

personal, social and emotional support

practical support in their caring role, including short breaks and emergency plans

a plan for future care for the child or young person, including transition to adult services.

When the needs of families and carers have been identified, discuss help available locally
and, taking into account their preferences, offer information, advice, training and support,
especially if they:

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need help with the personal, social or emotional care of the child or young person,
including age-related needs such as self-care, relationships or sexualityare involved in the delivery of an intervention for the child or young person in collaboration
with health and social care professionals.

Surveillance decisionThis review question should not be updated.

4-year surveillance summary
4
An RCT (n=122 mothers of young children
with ASD [mean age 34 months]) found thatmothers in a brief cognitive behaviouralintervention problem-solving education (PSE)
group had significantly less parental stresscompared to mothers under usual care. The
risk reduction in clinically significant depressive
symptoms did not reach statistical significancebut there was a statistically significant reduction
in mean depressive symptoms in PSE mothers
compared to mothers under usual care.

Topic expert feedback
No topic expert feedback was relevant to thisevidence.
Impact statement
The new evidence supports current
recommendations which suggest offering
support when the needs of families and carers
have been identified.

New evidence is unlikely to change guideline
recommendations.

Interventions aimed at the core features of autism
Specific interventions for the core features of autism
Psychosocial interventions
Pharmacological and dietary interventions

170 – 10For children and young people with autism, what are the benefits ofpsychosocial, pharmacological or biomedical interventions for the corefeatures of autism (overall autistic behaviours, impaired reciprocalsocial communication and interaction, and restricted interests and rigid
and repetitive behaviours)* when compared with alternative
management strategies?

* Subgroup analyses will examine and compare treatment effects on core autism features when the interventions are
specifically aimed at these features (direct outcomes) and when the primary target of the intervention was anotheroutcome but effects on core autism features are examined (indirect outcomes).

Subquestions
For children and young people with autism, and their families and carers, is the engagement with oreffectiveness of interventions aimed at the core features of autism different for:

looked after children?

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

immigrant groups?

children with regression in skills?

For children and young people with autism is the effectiveness of interventions aimed at the corefeatures of autism moderated by (1.3.1):
the nature and severity of the condition?

the presence of coexisting conditions (including, mental and behaviour,neurodevelopmental, medical or genetic, and functional, problems and disorders)?



age?



gender?



the presence of sensory differences?



IQ?



language level?

family/carer contextual factors (for example, socioeconomic status, parental education,
parental mental health, sibling with special education needs)?

For children and young people with autism is the effectiveness of interventions aimed at the corefeatures of autism mediated by:

the intensity of the intervention?

the duration of the intervention?

the length of follow-up?

programme components?

Recommendations derived from this question
1.1.5

1.3.1

Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:looked-after children and young peoplethose from immigrant groups

those with regression in skills



those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

mental health problems.

Consider a specific social-communication intervention for the core features of autism inchildren and young people that includes play-based strategies with parents, carers andteachers 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 andinteraction

include techniques of therapist modelling and video-interaction feedback

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

include techniques to expand the child or young person's communication, interactive playand 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.
1.3.2

Do not use the following interventions for the management of core features of autism inchildren and young people:

antipsychotics



antidepressants

anticonvulsants

exclusion diets (such as gluten- or casein-free diets).

1.6.1

Do not use neurofeedback to manage speech and language problems in children and young
people with autism.

1.6.2

Do not use auditory integration training to manage speech and language problems in children
and young people with autism.

1.6.3

Do not use omega‑3 fatty acids to manage sleep problems in children and young people with
autism.

1.6.4

Do not use the following interventions to manage autism in any context in children and young
people:secretinchelation

hyperbaric oxygen therapy.

Surveillance decisionThis review question should not be updated.

Psychosocial interventions

4-year surveillance summary
There were 10 new studies on different
psychosocial interventions.


A Theory of Mind intervention was reported
5
by a systematic review . The systematic
review reported positive effects onemotional recognition and joint attention
behaviours within adult-child interaction inchildren and adults with ASD without
reporting results specifically in children(n=22 RCTs, n=695 children and adults).



A comprehensive psychosocial intervention
6
was reported by an RCT (n=60 children
with high-functioning ASD, ages 7 to 12
years). This RCT reported significantly
better encoding of sad facial expressions inchildren with high-functioning ASD whowere in the comprehensive psychosocial
intervention group.

Interventions targeting parents were
7
reported by 4 studies. One RCT (n=152
pre-school children with autism) reported nosignificant but clinically meaningful
symptom improvement in children receivinga parent-mediated, communication-focused
8
therapy. Another RCT (n=53 children with
autism and significant language delay, aged
2 to 6 years) reported that children with
autism and significant language delay had
significant improvements in frequency ofutterances and adaptive communication
skills who were receiving a pivotal response
treatment parent training group intervention.
9
Another RCT (n=86 toddlers with ASD,
aged 22 to 36 months) reported that
toddlers with ASD showed significant
effects on joint engagement when
randomised to a parent-training group (joint
attention, symbolic play, engagement andregulation [JASPER]). A systematic review
10(n=17 RCTs, n=919 children with ASD)
reported significant results in positive

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change in patterns of parent-childinteraction, improvement in child language
comprehension, and reduction in theseverity of children's autism characteristics
in children with ASD receiving parentmediated early interventions.
Interventions targeting social skills/social
communication were reported by a11
systematic review (n=5 RCTs, n=196
participants with ASD, aged 5 to 21 years)
which reported significant improvements inoverall social competence and friendship
quality in the social skills groups but nodifferences in relation to emotionalrecognition or social communication (n=5
RCTs, n=196 participants with ASD, aged 5
to 21 years).
Other interventions were reported in 2
12
studies. An RCT (n=116 participants with
ASD, aged 6 to 16 years) reported
significant improvements in the therapeutic
horseback riding group on measures of
irritability (primary outcome), hyperactivity,
social cognition and social communicationin children and young people with ASD. A
13systematic review (n=10 RCTs, n=165
children with ASD) reported that music
therapy for children with ASD had an effecton social interaction, non-verbal
communicative skills within the therapy
context, verbal communicative skills,
initiating behaviour, and social-emotional
reciprocity. There was no significant
difference in non-verbal communicativeskills outside of the therapy context.

social skills training (SOSTA-FRA) in
children and adolescents with highfunctioning ASD showed post intervention
efficacy with regard to parent-rated social
responsiveness.


An RCT (n=128 children aged 2 to 5
years) found positive changes in parentchild interaction with the Play andLanguage for Autistic Youngsters Project
Home Consultation model in combination
with usual community services in young
children with ASD.



A 2-year follow-up study of an RCT (n=39children aged 6 years) testing theeffectiveness of the Early Start Denver
Model (ESDM) which found that gains fromearly intensive intervention were maintainedat follow-up.



An RCT (n=112 families) concluded that
there were improvements in joint
engagement, joint attention and symbolic
play with short-term community caregiverinterventions for preschool children with
ASD from low resourced families.



A study found that parent synchrony andchild initiations were mediator mechanisms
by which the parent-mediatedcommunication-focused treatment inchildren with autism (PACT) influenced
changes in child behaviour through thetargeted parent behaviour. Sample size was
not reported in the abstract.



A systematic review and meta-analysis(26 studies, n=1738 children, average age
3.3 years) concluded that earlyinterventions improved spoken languages
outcomes for children with ASD.

14An RCT (n=27 children with pervasive
developmental disorders) reported thatchildren receiving additional language
instruction made significantly more gains inlanguage skills than those who wereassigned to treatment as usual group.

Topic expert feedback
Topic experts highlighted the following relevant
studies in children and young people with
autism:

An RCT (n=54 children under 6 years)
concluded that an iPad™ intervention
targeting social communication skills inchildren with autism did not have anobservable impact on real-worldcommunication skills.



An RCT (n=228 children andadolescents) concluded that a group-based

15

16

17

18

19

20

21

Impact statement
The new evidence reported improvements incore features of autism using different
psychosocial interventions: Theory of Mind,
comprehensive psychosocial interventions,parent training, social skills interventions,
therapeutic horseback riding, music therapy,
additional language instruction, and earlyinterventions. Although these interventions
were not specific social-communicationinterventions, they targeted the core features ofautism suggested by the guideline: joint
attention, engagement and reciprocal
communication. Therefore, new evidence
supports the benefit of interventions targeting

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the core features of autism: joint attention,
engagement and reciprocal communication.

Pharmacological interventions
4-year surveillance summary
22
A systematic review (n=9 RCTs, n=320
children and adults with ASD) evaluatedtreatment with selective serotonin reuptake
inhibitors compared to placebo but studies
including children were unsuitable for metaanalysis. One large, high-quality study inchildren showed no evidence of a positiveeffect of citalopram.
23

A pilot RCT (n=60 children with autism, mean
age 4.5 years) evaluated a combined treatment
with bumetanide and applied behaviour
analysis (ABA) compared with ABA only inchildren with autism. The combined treatmentgroup showed lower scores in 2 outcomesmeasures: the Autism Behaviour Checklist(ABC) and the Clinical Global Impressions(CGI) compared with the ABA only group.
Lower scores on ABC and CGI mean lower
overall autistic behaviours.
Topic expert feedback
The NICE Medicines and Prescribing
Programme (MPP) highlighted that selective

Biomedical interventions
4-year surveillance summary
There were 7 new studies reporting on
biomedical interventions.
A randomised crossover trial reported in 2
24,25
publications(n=20 male children with
autism) found improvement in autistic
behaviours in the treatment group under anodal
transcranial direct current stimulation (tDCS)
compared with a placebo group.
26

A systematic review (n=1 RCT, n=49 children
with ASD) reported that the included RCT inchildren with ASD did not provide evidence thatmultiple rounds of oral dimercaptosuccinic acidNew evidence is unlikely to change guideline
recommendations.

serotonin reuptake inhibitors are not licensed
for autism. Citalopram is not recommended foruse in people under 18 years. It was also
highlighted that bumetanide is not licensed foruse in autism and it is used as a diuretic (loopdiuretic) but not recommended for children
under 12 years. None of these medications arerecommended in the British National Formulary(BNF) for children for autism.
Impact statement
The new evidence reported no effects withcitalopram and a positive effect withbumetanide together with applied behaviour
analysis on overall autistic behaviours. Current
recommendations suggest not using
antidepressants for the management of corefeatures of autism in children and young
people. Bumetanide is not licensed to prescribe
in children and young people with autism.

New evidence is unlikely to change guideline
recommendations.

(a chelation agent) had an effect on ASD
symptoms.
27

An RCT (n=30 children with autism) reported
that the L-Carnitine group showed significant
improvement in the childhood autism rating
scale (CARS) compared with the placebogroup.
Three RCTs reported findings on omega-3 fatty
28
acid supplementation. An RCT (n=48
children with autism, 3 to 10 years old) reported
that omega-3 fatty acid supplementation did not
improve core symptoms of autism in children
29
compared with placebo. Another RCT (n=57
children with ASD, 5 to 8 years) found that
there was no statistical significant difference
between the omega-3 fatty acid group and theSurveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

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placebo group in the reduction of hyperactivity.
30
The other RCT (n= 38 children with ASD, 2
to 5 years old) found that the omega-3 fatty
acid group had worsening scores on the
Behaviour Assessment System for Children(BASC-2) compared to the placebo group.
Topic expert feedback
Topic experts highlighted the following study:
31

A randomised clinical crossover trial
concluded that an oxytocin nasal spray waswell tolerated and led to significant
improvements caregiver-rated social
responsiveness in young children with autism.
Impact statement
New evidence reported improvements on
autistic behaviours using anodal transcranial
direct current stimulation and L-Carnitine.

There was no evidence of an effect withmultiple rounds of oral dimercaptosuccinic acid(a chelation agent) and omega-3 fatty acidsupplementation. The guideline currently statesthat secretin, chelation and hyperbaric oxygentherapy should not be used but anodal
transcranial direct current stimulation and LCarnitine are not listed. However, evidence forthese interventions comes from 2 small trials
which is unlikely to be enough evidence todevelop new recommendations.
This topic will be evaluated again at the next
surveillance review.

New evidence is unlikely to change guideline
recommendations.

Interventions aimed at the core features of autism
Interventions for autism that should not be used

170 – 11For children and young people with autism, what are the potential harms
associated with psychosocial, pharmacological or biomedical
interventions?

Recommendations derived from this question
1.6.1

Do not use neurofeedback to manage speech and language problems in children and young
people with autism.

1.6.2

Do not use auditory integration training to manage speech and language problems in children
and young people with autism.

1.6.3

Do not use omega‑3 fatty acids to manage sleep problems in children and young people with
autism.

1.6.4

Do not use the following interventions to manage autism in any context in children and young
people:secretinchelation

hyperbaric oxygen therapy.

Surveillance decisionThis review question should not be updated.

4-year surveillance summary
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There were 2 studies reporting adverse eventsof psychosocial and biomedical interventions.
Psychosocial interventions
11

A systematic review (n=5 RCTs, n=196
participants with ASD, aged 5 to 21 years)
found that no adverse events were reported
following a social skills intervention.

Biomedical interventions


Topic expert feedback
No topic expert feedback was relevant to thisevidence.
Impact statement
Adverse events were not reported for social
skills interventions. Therefore, this evidence is
not likely to change current recommendations.
The guideline already recommends thatomega-3 fatty acids should not be used.

29

An RCT (n=57 children with ASD, 5 to 8
years) on omega-3 fatty acids reported thatadverse events were rare and notassociated with omega-3 fatty acids without
data in the abstract.

New evidence is unlikely to change guideline
recommendations.

Interventions aimed at behaviour that challenges
Interventions for behaviour that challenges
Anticipating and preventing behaviour that challenges
Assessment and initial intervention for behaviour that challenges
Psychosocial interventions for behaviour that challenges
Pharmacological interventions for behaviour that challenges

170 – 12For children and young people with autism, what are the benefits ofpsychosocial, pharmacological or biomedical interventions for
anticipating, preventing or managing behaviour that challenges or posesa risk*, when compared with alternative management strategies?

* Subgroup analyses will examine and compare treatment effects on behaviour that challenges when theinterventions are specifically aimed at these behaviours (direct outcomes) and when the primary target of theintervention was another outcome but effects on behaviour that challenges are examined (indirect outcomes).

Subquestions
For children and young people with autism, and their families and carers, is the engagement with oreffectiveness of interventions aimed at reducing behaviour that challenges or poses a risk different for:

looked after children?

immigrant groups?

children with regression in skills?

For children and young people with autism is the effectiveness of interventions aimed at reducing
behaviour that challenges or poses a risk moderated by:

the nature and severity of the condition?

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22

the presence of coexisting conditions (including, mental and behaviour,neurodevelopmental, medical or genetic, and functional, problems and disorders)?



age?



gender?



the presence of sensory differences?



IQ?



language level?

family/carer contextual factors (for example, socioeconomic status, parental education,
parental mental health, sibling with special education needs)?

For children and young people with autism is the effectiveness of interventions aimed at reducing
behaviour that challenges or poses a risk mediated by:

the intensity of the intervention?

the duration of the intervention?

the length of follow-up?

programme components?

Recommendations derived from this question
1.1.5

1.4.1

Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:looked-after children and young peoplethose from immigrant groups

those with regression in skills



those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

mental health problems.

Assess factors that may increase the risk of behaviour that challenges in routine assessment
and care planning in children and young people with autism, 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 otherneurodevelopmental conditions such as ADHD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 change, including puberty



exploitation or abuse by others

inadvertent reinforcement of behaviour that challenges

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
1.4.2

the absence of predictability and structure.

Develop a care plan with the child or young person and their families or carers that outlines
the steps needed to address the factors that may provoke behaviour that challenges,
including:

treatment, for example, for coexisting physical, mental health and behavioural problems



support, for example, for families or carers

necessary adjustments, for example, by increasing structure and minimising
unpredictability.

1.4.3

If a child or young person's behaviour becomes challenging, reassess factors identified in thecare plan and assess for any new factors that could provoke the behaviour.

1.4.4

Offer the following to address factors that may trigger or maintain behaviour that challenges:


treatment for physical disorders, or coexisting mental health and behavioural problems

interventions aimed at changing the environment, such as:providing advice to families and carersmaking adjustments or adaptations to the physical surroundings (see recommendation
1.1.9).

1.4.5

If behaviour remains challenging despite attempts to address the underlying possible causes,
consult senior colleagues and undertake a multidisciplinary review.

1.4.6

At the multidisciplinary review, take into account the following when choosing an intervention
for behaviour that challenges:


the nature, severity and impact of the behaviourthe child or young person's physical and communication needs and capabilitiesthe environmentthe support and training that families, carers or staff may need to implement theintervention effectively

the preferences of the child or young person and the family or carersthe child or young person's experience of, and response to, previous interventions.

1.4.7

If no coexisting mental health or behavioural problem, physical disorder or environmental
problem has been identified as triggering or maintaining the behaviour that challenges, offer
the child or young person a psychosocial intervention (informed by a functional assessmentof behaviour) as a first-line treatment.

1.4.8

The functional assessment should identify:

1.4.9



factors that appear to trigger the behaviourpatterns of behaviour

the needs that the child or young person is attempting to meet by performing the
behaviourthe consequences of the behaviour (that is, the reinforcement received as a result of the
behaviour).

Psychosocial interventions for behaviour that challenges should include:clearly identified target behavioura focus on outcomes that are linked to quality of life

assessment and modification of environmental factors that may contribute to initiating ormaintaining the behavioura clearly defined intervention strategy that takes into account the developmental level andcoexisting problems of the child or young person

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1.4.101.4.11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 taken before and after the intervention toascertain whether the agreed outcomes are being metconsistent application in all areas of the child or young person's environment (forexample, at home and at school)

agreement among parents, carers and professionals in all settings about how to
implement the intervention.

Consider antipsychotic medication** for managing behaviour that challenges in children andyoung people with autism when psychosocial or other interventions are insufficient or could
not be delivered because of the severity of the behaviour. Antipsychotic medication should beinitially prescribed and monitored by a paediatrician or psychiatrist who should:

identify the target behaviourdecide on an appropriate measure to monitor effectiveness, including frequency andseverity of the behaviour and a measure of global impactreview the effectiveness and any side effects of the medication after 3–4 weeksstop treatment if there is no indication of a clinically important response at 6 weeks.

If antipsychotic medication is prescribed:
start with a low dose

use the minimum effective dose needed

regularly review the benefits of the antipsychotic medication and any adverse events.

1.4.12

When choosing antipsychotic medication, take into account side effects, acquisition costs, thechild or young person's preference (or that of their parent or carer where appropriate) and
response to previous treatment with an antipsychotic.

1.4.13

When prescribing is transferred to primary or community care, the specialist should give clear
guidance to the practitioner who will be responsible for continued prescribing about:the selection of target behaviours

monitoring of beneficial and side effects

the potential for minimally effective dosing



the proposed duration of treatment

plans for stopping treatment.

** At the time of publication (August 2013), no antipsychotic medication had a UK marketing authorisation for use inchildren for this indication. The prescriber should follow relevant professional guidance, taking full responsibility forthe decision. Informed consent should be obtained and documented. See the General Medical Council's Good
practice in prescribing and managing medicines and devices for further information.

Surveillance decisionThis review question should not be updated.

Psychosocial interventions
4-year surveillance summary
32
An RCT (n=180 children with ASD anddisruptive behaviours, aged 3 to 7 years)
compared parent training (specific strategies tomanage disruptive behaviour) with parent
education (information about autism but nobehaviour management strategies). There weresignificantly greater declines in the Aberrant
Behaviour Checklist-Irritability subscale and in
the Home Situations Questionnaire-Autism
Spectrum Disorder in the parent training groupcompared to the parent education group.
Topic expert feedback

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A topic expert suggested that the summarised
32
above relates to RR-02 because the RCT
compares the efficacy of parent training(equipping parents with skills) with more broad
parent education interventions.

offering the child or young person a
psychosocial intervention (informed by afunctional assessment of behaviour) as a firstline treatment.

Impact statement
The evidence is generally consistent withcurrent recommendations which suggest

New evidence is unlikely to change guideline
recommendations.

Pharmacological interventions



An RCT (n=40 children with autism, aged
4 to12 years) reported that children with
autism taking galantamine added torisperidone showed greater improvement in
irritability compared with the risperidone
plus placebo group.



Two RCTs reported that children and38adolescents with ASD (n=40) and autistic
39
disorders (n=40) taking N-acetylcysteine
added to risperidone showed reduced
irritability compared with the risperidone
plus placebo group.

A pilot RCT (n=44 children with autistic
disorder, aged 4 to 12 years) reported thatchildren with autistic disorders taking
pioglitazone added to risperidone showed
reduction in irritability compared with theplacebo group.



An RCT (n=49 children with autistic
disorder, 5 to 12 years old) reported thatchildren with autistic disorders taking
riluzole added to risperidone showed
improvements in irritability compared withthe risperidone plus placebo group.

4-year surveillance summary
There were 9 new studies on antipsychotics
alone or in combination with otherinterventions. All of these studies, apart from
33
Handen et al. (2013) , used the Aberrant
Behaviour Checklist (ABC) which is ameasured of behaviour that challenges and it
was considered a critical outcome measure by
the Guideline Committee during thedevelopment of the guideline.








34

An RCT (n=85 participants with autistic
disorder and serious behavioral problems, 6
to 17 years old) reported no significant
differences between aripiprazole andplacebo in preventing relapse of irritability
symptoms in children and young people
with autistic disorder and serious
behavioural problems.
33

An RCT (n=124 children with ASD andserious behaviour problems, aged 4 to 13
years) reported that risperidone together
with parent training reduced inappropriate
behaviour and increased compliance toparental requests in children with ASD andserious behaviour problems. Behaviours
were assessed with a Structured
Observational Analog Procedure (SOAP)
which is an analogue measure of parentchild interactions.
35

An RCT (n=34 children and adolescentswith autism) reported that children andadolescents with autism taking buspirone
added to risperidone had less irritability
compared with participants in therisperidone and placebo group.
36

An RCT (n=40 children with autism)
reported that children with autism taking
celecoxib added to risperidone showed
greater improvement in irritability comparedwith children in the risperidone plus placebogroup.

37

40

41

42

One RCT (n=62 children with ASD
accompanied by hyperactivity, impulsiveness,and distractibility, mean age 8.5 years [SD2.25]) found that children taking extendedrelease guanfacine showed a greater decline inscores on the Aberrant Behavior Checklisthyperactivity subscale and better improvementon the Clinical Global Impression-Improvement
scale compared with the placebo group.
Topic expert feedback
The NICE Medicines and Prescribing
Programme (MPP) highlighted the following:

Aripiprazole only license for use in young
people is ‘for the treatment of schizophrenia
in adults and in adolescents aged 15 years
and older.’Surveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

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

Buspirone is not recommended for people
younger than 18 years.

Celecoxib and galantamine are not licensed
for children.

Galantamine is only license for dementia in
adults. Not licensed for children.

Guanfacine was recently licensed for ADHDin children and adolescents age 6 to 17
years. ESNM can be seen here.



N-acetylcysteine is used in paracetamol
overdose.



Pioglitazone is licensed for type 2 diabetes
in adults. SPC says ‘The safety and efficacyof pioglitazone in children and adolescents
under 18 years of age have not been
established. No data are available,’Riluzole used in adults to delay mechanicalventilation. The SPC says ‘notrecommended for use in paediatricpopulation, due to a lack of data on thesafety and efficacy.’

Risperidone is only license in children for
conduct disorder. SPC says: ‘indicated forthe short-term symptomatic treatment (up to
6 weeks) of persistent aggression in
conduct disorder in children from the age of
5 years and adolescents with sub average
intellectual functioning or mental retardation
diagnosed according to DSM-IV criteria, inwhom the severity of aggressive or otherdisruptive behaviours require
pharmacologic treatment. Pharmacologicaltreatment should be an integral part of amore comprehensive treatment programme,
including psychosocial and educational
intervention. It is recommended thatrisperidone be prescribed by a specialist inchild neurology and child and adolescent

psychiatry or physicians well familiar withthe treatment of conduct disorder ofchildren and adolescents.’
The NICE MPP also confirmed that there are
not changes in the footnote about antipsychotic
medications which is included in the guidance
recommendations online. This was checked onth
the 5 of April 2016.
Impact statement
The new evidence reported improvements in
irritability with different medications added torisperidone: buspirone, celecoxib, galantamine,
N-acetylcysteine, pioglitazone, or riluzole.
Other pharmacological interventions also had apositive effect on hyperactivity (extendedrelease guanfacine) and behavioural problems(risperidone together with parent training. No
effects were found with aripiprazole. Althoughthese studies did not specify targeting
behaviour that challenges in the abstract;
irritability, hyperactivity and behaviouralproblems were among the outcome measures
for studies on behaviour that challenges during
guideline development. It was highlighted by
the NICE MPP that most of the interventions
are not currently licensed for children.
Furthermore, this new evidence was reportedby small studies which are unlikely to beenough evidence to recommend the use of
these unlicensed medications in combination
with risperidone. Current recommendations
suggest antipsychotics for behaviour thatchallenges. Therefore, new evidence supports
current recommendation.

New evidence is unlikely to change guideline
recommendations.

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Interventions aimed at associated features of autism and coexisting
conditions
Interventions for coexisting problems
Interventions for sleep problems

170 – 13For children and young people with autism, what are the benefits ofpsychosocial, pharmacological or biomedical interventions forcoexisting problems or disorders (including adaptive behaviour, speech
and language problems, IQ and academic skills, sensory sensitivities,
motor skills, common coexisting mental health problems and common
functional problems)* when compared with alternative management
strategies?

* Subgroup analyses will examine and compare treatment effects on coexisting problems or disorders when theinterventions are specifically aimed at these features (direct outcomes) and when the primary target of theintervention was another outcome but effects on coexisting problems or disorders are examined (indirect outcomes).

Subquestions
For children and young people with autism, and their families and carers, is the engagement with oreffectiveness of interventions aimed at coexisting problems or disorders different for:

looked after children?

immigrant groups?

children with regression in skills?

For children and young people with autism is the effectiveness of interventions aimed at coexisting
problems or disorders moderated by:

the nature and severity of the condition?

the presence of coexisting conditions (including, mental and behaviour,neurodevelopmental, medical or genetic, and functional, problems and disorders)?



age?



gender?



the presence of sensory differences?



IQ?



language level?

family/carer contextual factors (for example, socioeconomic status, parental education,
parental mental health, sibling with special education needs)?

For children and young people with autism is the effectiveness of interventions aimed at coexisting
problems or disorders mediated by:

the intensity of the intervention?

the duration of the intervention?

 the length of follow-up?
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

programme components?

Recommendations derived from this question
1.1.5

1.7.1

1.7.2

1.7.3

1.7.4

Local autism teams should provide (or organise) the interventions and care recommended inthis guideline for children and young people with autism who have particular needs, including:looked-after children and young peoplethose from immigrant groups

those with regression in skills



those with coexisting conditions such as:severe visual and hearing impairmentsother medical problems including epilepsy or sleep and elimination problems



motor disorders including cerebral palsy



intellectual disabilitysevere communication impairment, including lack of spoken language, or complex
language disorders

mental health problems.

Offer psychosocial and pharmacological interventions for the management of coexisting
mental health or medical problems in children and young people with autism in line with NICE
guidance for children and young people, including:Attention deficit hyperactivity disorder (ADHD) (NICE clinical guideline 72)

Conduct disorders in children and young people (NICE clinical guideline 158)

Constipation in children and young people (NICE clinical guideline 99)Depression in children and young people (NICE clinical guideline 28)Epilepsy (NICE clinical guideline 137)

Obsessive-compulsive disorder (OCD) and body dysmorphic disorder (BDD) (NICE
clinical guideline 31)Post-traumatic stress disorder (PTSD) (NICE clinical guideline 26).

Consider the following for children and young people with autism and anxiety who have theverbal and cognitive ability to engage in a cognitive behavioural therapy (CBT) intervention:group CBT adjusted to the needs of children and young people with autismindividual CBT for children and young people who find group-based activities difficult.

Consider adapting the method of delivery of CBT for children and young people with autism
and anxiety to include:

emotion recognition training

greater use of written and visual information and structured worksheets

a more cognitively concrete and structured approachsimplified cognitive activities, for example, multiple-choice worksheets

involving a parent or carer to support the implementation of the intervention, for example,
involving them in therapy sessions



maintaining attention by offering regular breaks



incorporating the child or young person's special interests into therapy if possible.

If a child or young person with autism develops a sleep problem offer an assessment that
identifies:

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what the sleep problem is (for example, delay in falling asleep, frequent waking, unusual
behaviours, breathing problems or sleepiness during the day)

day and night sleep patterns, and any change to those patterns

whether bedtime is regular

what the sleep environment is like, for example:

the level of background noise

use of a blackout blinda television or computer in the bedroom

whether the child shares the room with someone

presence of comorbidities especially those that feature hyperactivity or other behaviouralproblemslevels of activity and exercise during the daypossible physical illness or discomfort (for example, reflux, ear or toothache, constipation
or eczema)effects of any medication

any other individual factors thought to enhance or disturb sleep, such as emotional
relationships or problems at school

the impact of sleep and behavioural problems on parents or carers and other family
members.

1.7.5

If the child or young person with autism snores loudly, chokes or appears to stop breathing
while sleeping, refer to a specialist to check for obstructive sleep apnoea.

1.7.6

Develop a sleep plan (this will often be a specific sleep behavioural intervention) with theparents or carers to help address the identified sleep problems and to establish a regularnight-time sleep pattern. Ask the parents or carers to record the child or young person's sleep
and wakefulness throughout the day and night over a 2‑week period. Use this information tomodify the sleep plan if necessary and review the plan regularly until a regular sleep patternis established.

1.7.7

Do not use a pharmacological intervention to aid sleep unless:

sleep problems persist despite following the sleep plansleep problems are having a negative impact on the child or young person and their family
or carers.

If a pharmacological intervention is used to aid sleep it should:

1.7.8



only be used following consultation with a specialist paediatrician or psychiatrist withexpertise in the management of autism or paediatric sleep medicine

be used in conjunction with non-pharmacological interventions



be regularly reviewed to evaluate the ongoing need for a pharmacological intervention
and to ensure that the benefits continue to outweigh the side effects and risks.

If the sleep problems continue to impact on the child or young person or their parents or
carers, consider:referral to a paediatric sleep specialist and

short breaks and other respite care for one night or more. Short breaks may need to berepeated regularly to ensure that parents or carers are adequately supported. Agree thefrequency of breaks with them and record this in the care plan.

Surveillance decisionThis review question should not be updated.
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4-year surveillance summary
There were 5 studies reporting psychosocialand pharmacological interventions forcoexisting problems and disorders in children
and young people with autism.
Attention-deficit/hyperactivity disorder (ADHD)

Two RCTs (n=45 children with high-functioning
45
ASD and anxiety, aged 7 to 11 years) (n=33
adolescents with ASD and anxiety, aged 11 to46
15 years) and a pilot RCT (n=30 adolescents47with ASD and anxiety symptoms) reported
that psychosocial interventions improved
anxiety symptoms.

43

An RCT (n=128 children with ASD and
ADHD, aged 5 to 14 years) reported thatatomoxetine and parent training (alone and incombination) reduced ADHD symptoms
compared with placebo.
Sensory difficulties
44

A randomised trial (n=32 children with
autism, aged 4 to 8 years) reported thatchildren in the occupational therapy group
scored significantly higher on Goal Attainment
Scales and also scored significantly better on
measures of caregiver assistance in self-careand socialisation than the usual care group.
Anxiety

Topic expert feedback
No topic expert feedback was relevant to thisevidence.
Impact statement
The evidence is generally consistent withcurrent recommendations which suggest
offering psychosocial and pharmacologicalinterventions for the management of coexisting
mental health or medical problems in children
and young people with autism in line with NICE
guidance for children and young people.

New evidence is unlikely to change guideline
recommendations.

Transition to adult services

170 – 14What are the essential elements that assist in the transition into
adulthood services for young people with autism?

Recommendations derived from this question
1.8.1

Local autism teams should ensure that young people with autism who are receiving treatment
and care from child and adolescent mental health services (CAMHS) or child health services
are reassessed at around 14 years to establish the need for continuing treatment into
adulthood.

1.8.2

If continuing treatment is necessary, make arrangements for a smooth transition to adultservices and give information to the young person about the treatment and services they may
need.

1.8.3

The timing of transition may vary locally and individually but should usually be completed by
the time the young person is 18 years. Variations should be agreed by both child and adultservices.

1.8.4

As part of the preparation for the transition to adult services, health and social care
professionals should carry out a comprehensive assessment of the young person with
autism.

1.8.5

The assessment should make best use of existing documentation about personal,
educational, occupational, social and communication functioning, and should include
assessment of any coexisting conditions, especially depression, anxiety, ADHD, obsessive-

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compulsive disorder (OCD) and global delay or intellectual disability in line with Autism inadults (NICE clinical guideline 142).
1.8.6

For young people aged 16 or older whose needs are complex or severe, use the careprogramme approach (CPA) in England, or care and treatment plans in Wales, as an aid totransfer between services.

1.8.7

Involve the young person in the planning and, where appropriate, their parents or carers.

1.8.8

Provide information about adult services to the young person, and their parents or carers,
including their right to a social care assessment at age 18.

1.8.9

During transition to adult services, consider a formal meeting involving health and social careand other relevant professionals from child and adult services.

Surveillance decisionThis review question should not be updated.

4-year surveillance summary
48
A national survey reported that less than aquarter of youths with ASD received healthcare transition services in the United States ofAmerica. Only 14% of youths with ASD had adiscussion with their paediatrician abouttransitioning to an adult provider, less than aquarter had a discussion about healthinsurance retention, and just under half
discussed adult health care needs or wereencouraged to take on appropriate
responsibility.
49

A study (n=39 families) reported that youths
with ASD and a comorbid psychiatric diagnosis
and lower levels of adaptive behaviour received
more services during the transition toadulthood. Greater unmet needs were reported

for youth who were racial/ethnic minorities, who
had more behaviour problems, and whoseparents had greater anxiety.
Topic expert feedback
No topic expert feedback was relevant to thisevidence.
Impact statement
New evidence was found reporting issues
related to transition services. Current
recommendations suggest what should becovered during the transition to adult services
including the engagement of the young people
with autism and their parents and carers.

New evidence is unlikely to change guideline
recommendations.

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Research recommendations
At 4-year and 8-year surveillance reviews of guidelines published after 2011, we assess
progress made against prioritised research recommendations. We may then propose toremove research recommendations from the NICE version of the guideline and the NICE
database for research recommendations. The research recommendations will remain in thefull versions of the guideline. See NICE’s research recommendations process and methods
guide 2015 for more information.
These research recommendations were deemed priority areas for research by the Guideline
Committee, therefore at this 4-year surveillance review time point a decision will be taken onwhether to retain the research recommendations or stand them down.
We applied the following approach: New evidence relevant to the research recommendation was found and an update of therelated review question is planned.
 The research recommendation will be removed from the NICE version of the guideline
and the NICE research recommendations database. If needed, a new research
recommendation may be made as part of the update process.
 New evidence relevant to the research recommendation was found but an update of therelated review question is not planned because the new evidence is insufficient to trigger
an update.
 The research recommendation will be retained because there is evidence of research
activity in this area.
 New evidence relevant to the research recommendation was found but an update of therelated review question is not planned because evidence supports current
recommendations.


The research recommendation will be removed from the NICE version of the guideline
and the NICE research recommendations database because further research isunlikely to impact on the guideline.

 Ongoing research relevant to the research recommendation was found.
 The research recommendation will be retained and evidence from the ongoing
research will be considered when results are published.
 No new evidence relevant to the research recommendation was found and no ongoingstudies were identified.
 The research recommendation will be removed from the NICE version of guideline andthe NICE research recommendations database because there is no evidence of
research activity in this area.
 The research recommendation would be answered by a study design that was notincluded in the search (usually systematic reviews or randomised controlled trials).
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 The research recommendation will be retained in the NICE version of the guideline andthe NICE research recommendations database.
 The new research recommendation was made during a recent update of the guideline.
 The research recommendation will be retained in the NICE version of the guideline andthe NICE research recommendations database.
RR – 01

What is the value of a key worker approach (defined by protocol anddelivered in addition to usual care) for children and young people with
autism in terms of parental satisfaction, functioning and stress and childpsychopathology?

Surveillance decision
No new information was identified at any surveillance review.
This research recommendation should be removed from the NICE version of the guideline and the NICE
research recommendations database.

RR – 02

Is a group-based parent training intervention for parents or carers ofchildren and young people with autism clinically and cost effective in
reducing early and emerging behaviour that challenges in the short- andmedium-term compared with treatment as usual?

Surveillance decision
New evidence relevant to the research recommendation was found but an update of the related review
question is not planned because the new evidence is insufficient to trigger an update.
32

A topic expert suggested that an RCT concerns to this RR. However, the RCT does not meet 2 RCT
criteria recommended to answer this question regarding the evaluation of medium-term use of
medication and a cost-effectiveness evaluation.
This research recommendation should be retained in the NICE version of the guideline and the NICE
research recommendations database.

Psychosocial interventions
4-year surveillance summary
32
An RCT (n=180 children with ASD anddisruptive behaviours, aged 3 to 7 years)
compared parent training (specific strategies tomanage disruptive behaviour) with parent
education (information about autism but nobehaviour management strategies). There weresignificantly greater declines in the Aberrant
Behaviour Checklist-Irritability subscale and in
the Home Situations Questionnaire-Autism
Spectrum Disorder in the parent training groupcompared to the parent education group.

compares the efficacy of parent training(equipping parents with skills) with more broad
parent education interventions.
Impact statement
The evidence is generally consistent withcurrent recommendations which suggest
offering the child or young person a
psychosocial intervention (informed by afunctional assessment of behaviour) as a firstline treatment.

New evidence is unlikely to change guideline
recommendations.

Topic expert feedback
A topic expert suggested that the summarised
32
above relates to RR-02 because the RCTSurveillance proposal consultation document May 2016 –Autism spectrum disorder in under 19s: support and management (2013) NICE guideline CG170

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RR – 03

Is a sleep hygiene intervention or melatonin clinically and cost effective inthe management of sleep onset, night waking and reduced total sleep inchildren (aged 4–10 years) with autism?

Surveillance decision
No new information was identified at any surveillance review.
This research recommendation should be removed from the NICE version of the guideline and the NICE
research recommendations database.

RR – 04

What is the comparative clinical and cost effectiveness of pharmacologicaland psychosocial interventions for anxiety disorders in children and young
people with autism?

Surveillance decision
No new information was identified at any surveillance review.
This research recommendation should be removed from the NICE version of the guideline and the NICE
research recommendations database.

RR – 05

Are comprehensive early interventions that combine multiple elements andare delivered by parents and teachers (for example, the Learning
Experiences – an Alternative Program for Preschoolers and their Parents[LEAP] model) effective in managing the core symptoms of autism andcoexisting difficulties (such as adaptive behaviour and developmental skills)
in pre-school children?

Surveillance decision
No new information was identified at any surveillance review.
This research recommendation should be removed from the NICE version of the guideline and the NICE
research recommendations database.

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