Autism spectrum disorder in under 19s: support and management

Introduction

This guidance has been developed by the National Institute for Health and Care Excellence (NICE) in collaboration with the Social Care Institute for Excellence (SCIE).

The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours, often with a lifelong impact. In addition to these features, autistic children and young people frequently experience a range of cognitive, learning, language, medical, emotional and behavioural problems, including: a need for routine; difficulty in understanding other people, including their intentions, feelings and perspectives; sleeping and eating disturbances; and mental health problems such as anxiety, depression, problems with attention, self-injurious behaviour and other challenging, sometimes aggressive behaviour. These features may substantially impact on the quality of life of the individual, and their family or carer, and lead to social vulnerability.

The clinical picture of autism is variable because of differences in the severity of autism itself, the presence of coexisting conditions and levels of cognitive ability, from profound intellectual disability in some people to average or above average intelligence quotient (IQ) in others.

Autism spectrum disorders are diagnosed in children, young people and adults if these behaviours meet the criteria defined in the International Statistical Classification of Diseases and Related Health Problems (ICD‑10) and the Diagnostic and Statistical Manual of Mental Disorders Fourth Edition (DSM‑IV) and have a significant impact on function. Both these diagnostic classification systems use the term 'pervasive developmental disorder', which encompasses autism, Asperger's syndrome and atypical autism (or 'pervasive developmental disorder not otherwise specified'). For a diagnosis of autism to be made, there must be impairments present and an impact on the person's adaptive function. Both classification systems are undergoing revision and have announced that the term 'autism spectrum disorder' will be used in future editions. For this guideline we will use the term 'autism' to include all autism spectrum disorders.

Although autism was once thought to be an uncommon developmental disorder, recent studies have reported prevalence rates of at least 1% in children and young people. Autism is diagnosed more frequently in boys.

The core autism behaviours are typically present in early childhood, although some features may not manifest until a change of situation, for example, the start of nursery or school or, less commonly, the transition to secondary school. Regression or stasis of language and social behaviour is reported for at least a third of autistic children. This usually, but not exclusively, occurs between the ages of 1 and 2 years, and the reasons for regression and stasis are unknown.

The way in which autism is expressed will differ across different ages and therefore for any individual may change over time as they mature, in response to environmental demands, in response to interventions, and in the context of coexisting conditions.

Around 70% of autistic people also meet diagnostic criteria for at least one other (often unrecognised) psychiatric disorder that further impairs psychosocial functioning, for example, attention deficit hyperactivity disorder (ADHD) or anxiety disorders. Intellectual disability (IQ below 70) coexists in approximately 50% of autistic children and young people.

There are many claims of a 'cure' for autism, all of which are without foundation. However, there are interventions that can help some of the core features of autism, some of the behaviours and problems commonly associated with autism, and support families and carers. There is also evidence for treatment strategies to reduce behaviour that challenges. This guideline will summarise the different ways that health and social care professionals can provide support, treatment and help for autistic children and young people, and their families and carers, from the early years through to their transition into young adult life.

This guideline covers autistic children and young people (across the full range of intellectual ability) from birth until their 19th birthday, and their parents and carers. It should be used alongside the NICE guidelines on autism: recognition, referral and diagnosis of children and young people on the autism spectrum and autism: recognition, referral, diagnosis and management of adults on the autism spectrum.

Good communication between healthcare professionals and autistic children and young people and their families and carers is essential. It should be supported by evidence-based written information tailored to the person's needs. Support and care, and the information people are given about it, should be culturally appropriate. It should also be accessible to people with additional needs such as physical, sensory or learning disabilities, and to people who do not speak or read English.

No antipsychotic medication has a UK marketing authorisation specifically for autistic children. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. The patient (or those with authority to give consent on their behalf) should provide informed consent, which should be documented. See the General Medical Council's Good advice on practice in prescribing and managing medicines and devices for further information. Where recommendations have been made for the use of drugs outside their licensed indications ('off-label use'), this is noted in the recommendations.