This guideline was developed by NICE in collaboration with the Social Care Institute for Excellence, and covers children and young people with autism across the full range of intellectual ability from birth until their 19th birthday, and their parents and carers. It should be used alongside the following NICE guidelines: Autism spectrum disorder in under 19s: recognition, referral and diagnosis; and Autism spectrum disorder in adults: diagnosis and management.
This Guidelines summary only covers key priorities for implementation in primary care. For the complete set of recommendations, refer to the full guideline.
Access to Health and Social Care Services
- Ensure that all autistic children and young people have full access to health and social care services, including mental health services, regardless of their intellectual ability or any co-existing diagnosis.
Knowledge and Competence of Health and Social Care Professionals
- Health and social care professionals working with autistic children and young people 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 autistic children and young people
- 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 an autistic child or young person.
Making Adjustments to the Social and Physical Environment and Processes of Care
- Take into account the physical environment in which autistic children and young people 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
- 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).
- 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.
Anticipating and Preventing Behaviour that Challenges
- Assess factors that may increase the risk of behaviour that challenges in routine assessment and care planning in autistic children and young people, including:
- impairments in communication that may result in difficulty understanding situations or in expressing needs and wishes
- co-existing physical disorders such as pain or gastrointestinal disorders
- co-existing 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.
Interventions for Behaviour that Challenges
Psychosocial Interventions for Behaviour that Challenges
- If no co-existing 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.
Pharmacological Interventions for Behaviour that Challenges
- Consider antipsychotic medication for managing behaviour that challenges in autistic children and young people when psychosocial or other interventions are insufficient or could not be delivered because of the severity of the behaviour.[A] 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.
Families and Carers
- 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.
Transition to Adult Services
- 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
- Involve the young person in the planning and, where appropriate, their parents or carers
- 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.