1 Recommendations

The following guidance is based on the best available evidence. The full guideline gives details of the methods and the evidence used to develop the guidance.

This guidance is part of a series of clinical guidelines on autism. It should be read alongside Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (NICE clinical guideline 128) and Autism: recognition, referral, diagnosis and management of adults on the autism spectrum (NICE clinical guideline 142).

The wording used in the recommendations in this guideline (for example, words such as 'offer' and 'consider') denotes the certainty with which the recommendation is made (the strength of the recommendation). See About this guideline for details.

1.1 General principles of care

Access to health and social care services

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.

Organisation and delivery of services

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 identification and 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 and transition to adult care in line with Autism in children and young people (covering identification and diagnosis) (NICE clinical guideline 128).

1.1.5 Local autism teams should provide (or organise) the interventions and care recommended in this 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.

1.1.6 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 of children and young people with autism

  • advice and interventions to promote functional adaptive skills including communication and daily living skills

  • assessing and managing behaviour that challenges

  • assessing and managing coexisting conditions

  • reassessing needs throughout childhood and adolescence, taking particular account of transition 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 adult services

    • shared care arrangements with primary care providers and ensuring that clear lines of communication between primary and secondary care are maintained.

1.1.7 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.

Knowledge and competence of health and social care professionals

1.1.8 Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism, which should 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 care services

  • 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

  • how to assess risk (including self-harm, harm to others, self-neglect, breakdown of family or residential support, exploitation or abuse by others) and develop a risk management plan

  • 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.

Making adjustments to the social and physical environment and processes of care

1.1.9 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 for the 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.

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

Information and involvement in decision-making

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 for the 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, with experience 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.

1.1.12 Make arrangements to support children and young people with autism and their family and carers during times of increased need, including major life changes such as puberty, starting or 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 at regular intervals. If children and young people express interest, offer a collaborative approach to treatment and care that takes their preferences into account.

1.2 Families and carers

1.2.1 Offer all families (including siblings) and carers verbal and written information about their right to:

  • short breaks and other respite care

  • a formal carer's assessment of their own physical and mental health needs, and how to access these.

1.2.2 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.

1.2.3 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:

  • 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.

1.3 Specific interventions for the core features of autism

Psychosocial interventions

1.3.1 Consider a specific social-communication intervention for the core features of autism in children and young people that includes 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.

Pharmacological and dietary interventions

1.3.2 Do not use the following interventions for the management of core features of autism in children and young people:

  • antipsychotics

  • antidepressants

  • anticonvulsants

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

1.4 Interventions for behaviour that challenges

Anticipating and preventing behaviour that challenges

1.4.1 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 other neurodevelopmental 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

  • the absence of predictability and structure.

1.4.2 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.

Assessment and initial intervention for behaviour that challenges

1.4.3 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.

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 the intervention 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.

Psychosocial interventions for behaviour that challenges

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 assessment of behaviour) as a first-line treatment.

1.4.8 The functional assessment should identify:

  • 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).

1.4.9 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 or maintaining the behaviour

  • a clearly defined intervention strategy that takes into account the developmental level and coexisting problems of the child or young person

  • 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 to ascertain whether the agreed outcomes are being met

  • consistent application in all areas of the child or young person's environment (for example, at home and at school)

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

Pharmacological interventions for behaviour that challenges

1.4.10 Consider antipsychotic medication[2] for managing behaviour that challenges in children and young 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 be initially prescribed and monitored by a paediatrician or psychiatrist who should:

  • identify the target behaviour

  • decide on an appropriate measure to monitor effectiveness, including frequency and severity 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.

1.4.11 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, the child 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.

1.5 Interventions for life skills

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

1.6 Interventions for autism that should not be used

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.

1.7 Interventions for coexisting problems

1.7.1 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:

1.7.2 Consider the following for children and young people with autism and anxiety who have the verbal 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.

1.7.3 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.

Interventions for sleep problems

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

  • 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 behavioural problems

  • 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 the parents or carers to help address the identified sleep problems and to establish a regular night-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 to modify the sleep plan if necessary and review the plan regularly until a regular sleep pattern is 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:

  • only be used following consultation with a specialist paediatrician or psychiatrist with expertise 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.

1.7.8 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 be repeated regularly to ensure that parents or carers are adequately supported. Agree the frequency of breaks with them and record this in the care plan.

1.8 Transition to adult services

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 adult services 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 adult services.

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

1.8.6 For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer 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 care and other relevant professionals from child and adult services.



[2] At the time of publication (August 2013), no antipsychotic medication had a UK marketing authorisation for use in children for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the 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.

  • National Institute for Health and Care Excellence (NICE)