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Healthcare
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Autism in children and young people
Short Text
Introduction
This pathway 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. Here, 'autism' is used to refer to 'autism spectrum disorder' or 'pervasive developmental disorder'.
Autism is a lifelong condition that has a great impact on children, young people and their family or carers. Diagnosis and needs assessment 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, social care and a route into voluntary organisations and contact with other children and families with similar experiences. All this can improve the lives of children, young people and their families.
NICE is also developing guidance on managing autism in children and young people.
Source guidance
The NICE guidance that was used to create the pathway.
Autism: recognition, referral and diagnosis in children and young people on the autism spectrum. NICE clinical guideline 128 (2011)
Quality standards
Quality statements
Effective interventions library
Successful effective interventions library details
Implementation
Assessment tools
The baseline and self-assessment tools are Excel spreadsheets that can be used by organisations to identify if they are in line with practice recommended in NICE guidance and to help them plan activity that will help them meet the recommendations.
Audit support
Audit support provides ready-to-use criteria, including exceptions, definitions, suggested data sources and a data collection tool.
Costing support
Costing support includes national cost impact reports that summarise the national costs and savings and discuss the assumptions used; costing templates to assess the impact on local budgets; and costing statements when the impact is not significant or impossible to quantify at a national level.
Information resources and templates
These include key points for scrutiny or compliance assessment, signposting to resources, checklists and case studies. They are designed to offer practical help in putting NICE guidance into practice and the format depends on the specific topic.
Learning resources
Learning resources are designed to support people to run workshops and for individual learning. They include clinical case scenarios, presentations for trainers and tests for participants.
Slide sets
Slide sets provide a framework for discussion and assist in local dissemination of the guidance. The slides contain the key messages from NICE guidance and can be tailored for local presentations.
Pathway information
Information for patients and the public
NICE produces booklets for patients and the public, called 'Understanding NICE guidance'. They summarise, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written a booklet for patients and the public explaining its guidance on each of the following topics.
Patient-centred care
Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If someone does not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent and the code of practice that accompanies the Mental Capacity Act. In Wales, healthcare professionals should follow advice on consent from the Welsh Government. If the person is under 16, healthcare professionals should follow the guidelines in Seeking consent: working with children.
Supporting information
Glossary
Developmental coordination disorder
Attention deficit hyperactivity disorder
Oppositional defiant disorder
Obsessive compulsive disorder
International Statistical Classification of Diseases and Related Health Problems, 10th Revision
Diagnostic and Statistical Manual of Mental Disorders, 4th edition
Possible autism
Possible autism
Recognise possible autism in children and young people
View the 'Recognising possible autism in children and young people' pathDecide whether to refer to the autism team
View the 'Referral of children and young people with possible autism' pathDecide on assessment
View the 'Deciding on assessment for possible autism in children and young people' pathThe autism diagnostic assessment
View the 'The autism diagnostic assessment for children and young people' pathService organisation
Service organisation
Service organisation
Strategy group
A local autism multi-agency strategy group should be set up, with managerial, commissioner and clinical representation from:
- child health and mental health services
- education
- social care
- parent and carer service users
- the voluntary sector.
The local autism strategy group should appoint a lead professional to be responsible for the local autism pathway for recognition, referral and diagnosis of children and young people. The aims of the group should include:
- improving early recognition of autism by raising awareness of the signs and symptoms of autism through multi-agency training – see:
- making sure the relevant professionals are aware of the local autism pathway and how to access diagnostic services
- supporting the smooth transition to adult services for young people
- ensuring data collection and audit of the pathway takes place.
The autism team
In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a:
- paediatrician and/or child and adolescent psychiatrist
- speech and language therapist
- clinical and/or educational psychologist.
The autism team should either include or have regular access to the following professionals if they are not already in the team:
- paediatrician or paediatric neurologist
- child and adolescent psychiatrist
- educational psychologist
- clinical psychologist
- occupational therapist.
Consider including in the autism team (or arranging access for the team to) other relevant professionals who may be able to contribute to the autism diagnostic assessment, for example, a specialist health visitor or nurse, specialist teacher or social worker.
The autism team should have the skills and competencies to:
- carry out an autism diagnostic assessment
- communicate with children and young people with suspected or known autism, and with their parents and carers, and sensitively share the diagnosis with them.
Autism team members should:
- provide advice to professionals about whether to refer children or young people for autism diagnostic assessments
- decide on the assessment needs of those referred or when referral to another service is needed
- carry out the autism diagnostic assessment
- share the outcome of the autism diagnostic assessment with parents and carers, and children and young people if appropriate
- with parent or carer consent (and the consent of the child or young person if appropriate) share information from the autism diagnostic assessment directly with relevant services, for example through a school visit by an autism team member
- offer information to children, young people and parents and carers about appropriate services and support.
Provide a single point of referral for access to the autism team.
The autism team should either have the skills (or have access to professionals that have the skills) needed to carry out an autism diagnostic assessment for children and young people with special circumstances including:
- coexisting conditions such as severe visual and hearing impairments, motor disorders including cerebral palsy, severe intellectual disability, complex language disorders or complex mental health disorders
- looked-after children and young people.
If young people present at the time of transition to adult services, the autism team should consider carrying out the autism diagnostic assessment jointly with the adult autism team, regardless of the young person's intellectual ability.
NICE has written a booklet for patients and the public explaining the guidance on diagnosing autism in children and young people.
Implementation
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Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodePaths in this pathway
- Recognising possible autism in children and young people
- Referral of children and young people with possible autism
- Deciding on assessment for possible autism in children and young people
- The autism diagnostic assessment for children and young people
- Diagnosing autism in children and young people
Pathway created: October 2011 Last updated: October 2011
Copyright © 2012 National Institute for Health and Clinical Excellence. All Rights Reserved.