Recognition, referral and diagnosis of children, young people and adults on the autism spectrum and management of adults on the autism spectrum
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Autism

Short Text

Recognition, referral and diagnosis of children, young people and adults on the autism spectrum and management of adults on the autism spectrum

Introduction

This pathway covers the recognition, referral and diagnosis of autism in children, young people and adults, and the management of autism in adults on the autism spectrum.
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' refers to 'autism spectrum disorders' encompassing autism, Asperger's syndrome and atypical autism (or pervasive developmental disorder not otherwise specified).
Autism is a lifelong condition that has a great impact on children, young people and adults and their family or carers. Diagnosis and needs assessment can offer an understanding of why a 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 people and families with similar experiences. All this can improve the lives of people with autism and their families.

Source guidance

The NICE guidance that was used to create the pathway.

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

Attention deficit hyperactivity disorder
Ideas, such as reinforcement and function of behaviour, that underlie behavioural therapies and underpin many interventions teaching adaptive skills for community living for people with autism, including those with challenging behaviour.
Systems designed to improve the overall quality of healthcare by standardising the care process and promoting organised efficient service user care based on best evidence to optimise service user outcomes.
A term used to describe behaviour that is a result of the interaction between individual and environmental factors, and includes stereotypic behaviour (such as rocking or hand flapping), anger, aggression, self-injury, and disruptive or destructive behaviour. Such behaviour is seen as challenging when it affects the person's or other people's quality of life and or jeopardises their safety.
A procedure that involves using one or more substances (chelating agents) to remove materials that are toxic, including heavy metals such as mercury, from the body.
Developmental coordination disorder
Diagnostic and Statistical Manual of Mental Disorders, 4th edition
An accessible format for written communication designed for people with a learning disability. It uses simple jargon-free language, short sentences and illustrations.
A therapeutic intervention whereby a facilitator supports the hand or arm of a person with autism while using a keyboard or other devices with the aim of helping the person to develop pointing skills and to communicate.
A method for understanding the causes and consequences of behaviour and its relationship to particular stimuli, and the function of the behaviour. The function of a particular behaviour can be analysed by typically identifying (1) the precursor or trigger of the behaviour, (2) the behaviour itself, and (3) the consequence of the behaviour.
Being over-sensitive (hyper-sensitive) or under-sensitive (hypo-sensitive) to sound, light, colour, smell or taste, which can cause anxiety or even pain in a person with autism.
A family member, partner, carer or other third party known to the person with autism who is able to provide information about the person's symptoms and behaviour so that professionals can have a fuller picture of the person's developmental history. Some assessment tools for autism require information from informants.
International Statistical Classification of Diseases and Related Health Problems, 10th Revision
Lower intellectual ability (usually defined as an IQ of less than 70) that leads to problems in learning, developing new skills, communication and carrying out daily activities. Learning disability severities are defined by the following IQ scores: mild = 50–69, moderate = 35–49 and severe = 20–34. A person with a mild to moderate learning disability may only need support in certain areas. However, a person with a moderate to severe learning disability may have no speech or limited communication, a significantly reduced ability to learn new skills and require support with daily activities such as dressing and eating. Learning disabilities are different from 'learning difficulties', like dyslexia, which do not affect intellect. Learning disability is sometimes also called 'intellectual disability'.
A technique used in behavioural therapy that utilises video and other media. The service user observes target behaviour on the video or computer screen, and repeats it.
Obsessive compulsive disorder
Oppositional defiant disorder
A technique used in behavioural therapy to teach 'rules' of social engagement through providing prompts for behaviour.

Services for people with autism

Services for people with autism

Children and young people up to 19 years

Children and young people

Management and support in children and young people

Management and support in children and young people

Management and support

NICE is developing guidance on managing autism in children and young people (Publication expected November 2013).

Paths in this pathway

Pathway created: June 2012 Last updated: June 2012

Copyright © 2013 National Institute for Health and Clinical Excellence. All Rights Reserved.

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