Autism diagnosis in children and young people: Recognition, referral and diagnosis of children and young people on the autism spectrum
This is an extract from the guidance and may be misleading if read alone. The complete guidance is available at guidance.nice.org.uk/cg128
This guideline covers the recognition, referral and diagnosis of autism in children and young people from birth up to 19 years.
‘The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours. 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 DSM-IV Fourth Edition (DSM-IV) and have a significant impact on function. The over-arching category term used in ICD-10 and DSM-IV is pervasive developmental disorder (PDD), a term now used synonymously with autism spectrum disorder (excluding Rett’s syndrome); it is a behaviourally defined group of disorders, which is heterogeneous in both cause and manifestation.
The guideline development group recognised that individuals and groups prefer a variety of terms, including autism spectrum disorder, autistic spectrum condition, autistic spectrum difference and neuro-diversity. For clarity and consistency, in this guideline the term ‘autism’ is used throughout, in keeping with the use of ‘autism’ in recent Department of Health, National Audit Office and Public Accounts Committee documents. However in this guideline ‘autism’ refers to ‘autism spectrum disorders’.
Autism is a lifelong disorder that has a great impact on the child or young person and their family or carers. When autism is diagnosed, families and carers and the child or young person themselves can experience a variety of emotions, shock and concern about the implications for the future. They may also have a profound sense of relief that others agree with their observations and concerns. Diagnosis and the assessment of needs can offer an understanding of why a child or young person is different from their peers and can open doors to support and services in education, health services and social care, and a route into voluntary organisations and contact with other children and families with similar experiences. All of these can improve the lives of the child or young person and their family.
The core autism behaviours are typically present in early childhood, but features are not always apparent until the circumstances of the child or young person change, for example when the child goes to nursery or primary school or moves to secondary school. Autism is strongly associated with a number of coexisting conditions. Recent studies have shown that approximately 70% of people with autism also meet diagnostic criteria for at least one other (often unrecognised) psychiatric disorder that is further impairing their psychosocial functioning. Intellectual disability (intelligence quotient [IQ] below 70) occurs in approximately 50% of young people with autism.
Autism was once thought to be an uncommon developmental disorder, but recent studies have reported increased prevalence and the condition is now thought to occur in at least 1% of children. This rising prevalence has increased demand for diagnostic services for children and young people of all ages in the health service.
Health services have a key role in recognising and diagnosing autism. Levels of understanding of autism among healthcare and other relevant professionals and availability of services differ greatly from one area to another. In addition, children and young people with certain coexisting conditions such as intellectual disability are less likely to be diagnosed with autism, leading to inequalities in healthcare and service provision.
Coordination between health agencies and other key services such as education, social care and the voluntary sector is important. Multi-agency staff should also work in partnership with the child or young person with autism and their family or carers.
This guideline does not cover management of autism but aims to improve recognition, referral and diagnosis, and the experience of children, young people and those who care for them. NICE is developing guidance on managing autism in children and young people (see www.nice.org.uk).