New NICE guidance to help medical staff recognise children and young people with autism
Local multidisciplinary autism teams are needed to improve the recognition and diagnosis of children and young people with autism.
Autism was once believed to be an uncommon disorder; however recent studies have reported increased prevalence and now at least 1 in 100 children is thought to be autistic. This has led to a greater demand for services.
Among the recommendations published in guidance today (28 September), NICE is calling 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 the condition. This will ensure that children and young people with possible autism, 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.
“This is the first of three NICE guidelines to focus on this condition. The recommendations emphasise the importance of local organisations, such as the NHS, local authorities and schools, working together to help ensure children and young people with autism as well as their parents or carers are able to access the support they need.”
- Local autism multi-agency strategy groups 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, and the voluntary sector.
- In each area a multidisciplinary ‘autism team' should be formed. This group should include a paediatrician and/or child and adolescent psychiatrist, a speech and language therapist and a clinical and/or educational psychologist.
- For each child who has an autism diagnostic assessment a case coordinator from the autism team should be identified.
- Every autism diagnostic assessment should include an assessment of social and communication skills and behaviours through interaction with and observation of the child or young person and consideration of any coexisting conditions.
- A profile of the child's or young person's strengths, skills, impairments and needs should be developed during their assessment. With consent, this profile can be shared with those involved in the child's education to help ensure the assessment will contribute to the child or young person's individual education plan and needs-based management plan.
Gillian Baird, Consultant Paediatrician, Guy's and St Thomas' NHS Foundation Trust, London and Chair of the Guideline Development Group said: “While the NHS is responsible for diagnosing autism, all services that support the wellbeing of children and young people, including education and the voluntary sector, can play a crucial role in recognising the possible signs and symptoms of autism. The NHS-led multi-agency strategy groups recommended in the NICE guideline will hopefully lead to more joined up working between these key services through training, integrated assessment and increased parent/carer partnership.”
Anne Marie McKigney, Consultant Child Psychologist, Aneurin Bevan Health Board and guideline developer said: “Around 70% of people who have autism will have co-existing conditions such as intellectual disability, attention deficit hyperactivity disorder and obsessive compulsive disorder. This can often mean that the child or young person's autism is less likely to be diagnosed accurately and efficiently which can lead to further stress and anxiety
“As more children and young people are being identified as being on the autism spectrum, it is important that the NHS is able to cope with the increased demand on diagnostic services. Establishing local teams of experts with a designated case coordinator for each individual and working collaboratively with families and other agencies will greatly support this.”
Penny Williams, Principal Speech and Language Therapist for Autism, Mary Sheridan Centre for Child Health, London and guideline developer said: “There is a broad range of symptoms associated with autism within the areas of social interaction, language development and unusual patterns of thought and behaviour. These can include intense interests and/or repetitive behaviours.
“Levels of understanding and the availability of services vary greatly across the country. The NICE guideline calls for healthcare professionals involved in diagnosis to assess the child or young person's social and communication skills and behaviours through listening to parents, carers and other professionals involved with the family and by interaction and observation of the child or young person. Equal priority should be given to both the differential diagnosis and in identifying an individual's strengths and needs.”
Notes to Editors
About the guideline
1. Please visit clinical guideline 128 for further information about NICE's clinical guideline on the recognition, referral and diagnosis of autism in children and young people, please visit: Contact the press office for embargoed copies of the guideline.
2. 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.
3. 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.
4. At least 1% of the child population aged 1-3 years has a form of ASD.
5. 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.
6. NICE is developing 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: www.nice.org.uk.
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: 28 September 2011