New draft guidance calls for improvements to NHS autism services for under-18s

The NHS needs to improve how it diagnoses autism in children and teenagers if it is to cope with the increasing demand on services, says new draft guidance out today (Friday 28 January).

At least 1 in 100 children under the age of three years has an autism spectrum disorder (ASD). However, levels of understanding among healthcare professionals vary greatly across the UK. ASD can be difficult to correctly diagnose as there are lots of possible signs and symptoms, as well as coexisting conditions with similar features, such as intellectual disability, attention deficit hyperactivity disorder and obsessive compulsive disorder.

In its draft clinical guideline, the National Institute for Health and Care Excellence (NICE) calls for healthcare professionals in the NHS to work closer together, as well as to improve how they engage with schools, social care, the voluntary sector and other key services which can offer useful insight into this condition. This is to ensure that children and teenagers with possible ASD, as well as their parents or carers, receive the appropriate care and support they need.

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE said: “A correct diagnosis of autism can bring a profound sense of relief to some children and young people from what can be an intense feeling of isolation from the rest of the world. It can also help them and their families or carers to get support from education, health services and voluntary organisations and make contact with others with similar experiences.

“Our draft recommendations outline the best ways that healthcare professionals can recognise the possible signs and symptoms of autism spectrum disorders in children and young people, when they should consider referring them to a specialist team, and how they should then be diagnosed.”

In its draft clinical guideline, NICE advises that:

  • A local ASD strategy group should be formed, with representation from child health and mental health services, education, social care, the voluntary sector and parents or carers of children with ASD.
  • A multi-professional team should lead the referral and diagnosis of individuals with possible ASD; including a paediatrician, a child and adolescent psychiatrist, a speech and language therapist, a clinical or educational psychologist, and an occupational therapist. The ASD Team should undertake the diagnostic assessments where appropriate and advise healthcare professionals about referrals.
  • Every child or young person who is to undergo a diagnostic assessment of ASD should have an appointed case coordinator from the ASD Team who will be their single point of contact and signpost them, and their parents/carers, to appropriate services and support.
  • Healthcare professionals should always consider the possibility that the child/young person may have another condition with similar features to ASD. If an alternative diagnosis is suspected, they should undertake the appropriate assessments and referrals.
  • Following diagnosis, the ASD Team should create a profile of the child or young person, detailing their strengths, skills, impairments and needs. This will support their education, communication, behavioural, emotional and family needs. With consent from the parent or carer, the profile should also be shared directly with relevant services, e.g. a school visit by a team member.

Dr Macbeth added: “We are inviting anyone who has experience with autism, including healthcare professionals, charities and members of the public, to comment on our draft recommendations via one of our registered stakeholders. In particular, we are very keen to hear from young people or carers of young people to get their thoughts on how our draft recommendations could affect them. This is so that we can ensure the final version of our clinical guideline is of greatest benefit to the NHS and importantly to those who live with this condition.”

The consultation deadline is Friday 25 March 2011. NICE then hopes to publish its final clinical guideline in September 2011. Once published, the recommendations will represent best clinical practice for the NHS.


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Notes to Editors

About the clinical guideline

1. For further information about the draft recommendations on “Autism Spectrum Disorder: recognition, referral and diagnosis in children and young people”, including how stakeholders can submit their comments, visit:

About autism spectrum disorders

1. Autism spectrum disorders (ASDs) are a range of developmental disorders that describe the abnormal social interactions, communication behaviours and patterns of thought and physical behaviour of some people.

2. The term spectrum is used because the ASD symptoms can vary from child to child and from mild to severe. Broadly speaking, there are three main types: Autistic disorder/classic autism, Asperger syndrome, and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)/atypical autism. For further information visit NHS Choices:

3. At least 1% of the child population aged 1-3 years has a form of ASD.

4. Approximately 70% of individuals with ASDs also meet diagnostic criteria for at least one other (often unrecognised) psychiatric disorder that is further impairing their psychosocial functioning. E.g. intellectual disability occurs in approximately 50% of young people with an ASD.NICE has also been asked to publish guidance for the NHS on the management of autism in children and young people and on the management of autistic spectrum conditions in adults. For further information, visit:

About NICE

1. The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health

2. NICE produces guidance in three areas of health:

  • public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
  • health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS
  • clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS

3. NICE produces standards for patient care:

  • quality standards - these reflect the very best in high quality patient care, to help healthcare practitioners and commissioners of care deliver excellent services
  • Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients

4. NICE provides advice and support on putting NICE guidance and standards into practice through its implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.

This page was last updated: 27 January 2011

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Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.