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SIGN Guideline 98: Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders
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In 2001, the Public Health Institute of Scotland (PHIS) Autistic Spectrum Disorders Needs Assessment Report recommended that a SIGN guideline should be developed to improve the assessment and management of autism spectrum disorders (ASD) in Scotland.1 The 2003 National Autism Plan for Children (NAPC) for England and Wales highlighted the need for a systematic approach to ASD assessment, diagnosis and intervention.2
The PHIS report reviewed ASD prevalence studies and estimated that there were 7,714 children under 19 in Scotland with ASD. The figure was based on a previously published ASD prevalence rate of 70.3 per 10,000 in pre-school children.1, 3
In a more recent study, the total prevalence of ASD in 9-10 year olds was 116.1 per 10,000 in the Thames region of London in 2006. 4
ASD occurs more commonly in boys than girls, at a ratio of approximately 4:1, although this varies across the spectrum.5 There is no evidence of an association between ASD and social class6, 7 or ethnicity.7, 8
Early diagnosis and appropriate intervention, specialised education, and structured support may help a child to maximise his or her potential. There are significant disparities in multiagency ASD provision in Scotland.9 Variation in referrals from primary care may be related to the problems that some primary care professionals can have in recognising the key symptoms of ASD. Referral rates may also be influenced by parental education and social class.10 There is variation in referral pathways and service provision and in the range of healthcare and other professionals involved.
The guideline applies to children and young people up to the age of 18, which may include the period of transition from childhood to adult services. Sometimes the evidence and any consequent recommendations are age specific.
This guideline focuses on assessment, diagnosis and clinical interventions for ASD. It considers the evidence for joint working and consultation with children and young people, and with parents and carers. It also considers the evidence for how multidisciplinary and multiagency working can best address the needs of individuals with ASD at all levels of provision (primary, secondary and tertiary care).
The guideline does not examine the broad range of educational and social opportunities offered to children and young people with ASD, which may add value to their lives and promote social inclusion. Educational interventions which may influence clinical outcomes have been considered (see section 3).
The guideline does not review epidemiology, including that relating to the possible increase in the prevalence of ASD, and the use of the measles, mumps and rubella (MMR) vaccine. Summaries of the issues and the evidence around ASD and MMR have been published elsewhere, for example: www.mmrthefacts.nhs.uk/ or www.healthscotland.com/immunisation/mmr/mmrdiscussionpack.cfm and www.mrc.ac.uk/pdf-autism-report.pdf
The management of ASD involves a wide range of professionals. A number of different pathways of care, all involving a variety of specialists, exist across Scotland. This guideline will be of interest to healthcare professionals and others involved in the care of children with ASD, including; child and adolescent psychiatrists, clinical and educational psychologists, commissioners of health, educational and social children’s services, dietitians, general practitioners (GPs), health visitors, nurses, occupational therapists, ophthalmologists, paediatricians, parent/carer groups, primary care mental health workers, psychotherapists, physiotherapists, social workers, speech and language therapists and teachers. The guideline will also be of interest to children and young people with ASD and their families.
The aim of this guideline is to provide the evidence base and recommendations to inform clinical service provision, in particular, assessment and clinical intervention. The guideline development group hopes that the concept of “ASD-friendly” services is a constant throughout this guideline. The involvement of parents and family and the young person affected by ASD is important to the success of any intervention. Healthcare professionals should be given adequate time for discussion with children, young people and parents and there should be continuity of care across services.
It is recognised that many assessments and interventions will be undertaken with partners in education, supported within the new framework of the Additional Support for Learning (Education) Scotland Act (2004), and with partners in social services (see www.opsi.gov.uk/legislation/scotland/acts2004/20040004.htm).
Accurate diagnosis of ASD can be difficult, but when reviewing the literature for this guideline, it has only been possible to interpret and generalise from studies where the approach to diagnosis has been clearly stated. When considering the literature it was evident that studies of children and young people with ASD varied in terms of how the diagnosis had been made. This made it difficult to compare or combine the results of studies, as it was not always clear which, if any, definition of ASD had been used, or whether populations with similar characteristics were being studied.
When reviewing the literature the guideline development group considered the assessment process, classification system and diagnostic instrument to be important in the accurate diagnosis of ASD (see annex 1 for further details). Recommendations derived from studies that did not clearly describe how participants were diagnosed were downgraded according to the SIGN grading system.
Some interventions may be evaluated through methods not currently defined within the SIGN grading system. In recognition of this, meta-analyses of well conducted single case designs carried out over at least two cycles have been classed as level 2 evidence.
Recommendations have been made where evidence is available. There was often a lack of evidence for investigations and interventions that are in everyday use. Research in these areas should be a priority (see section 9.4, recommendations for research).
This guideline is not intended to be construed or to serve as a standard of care. Standards of care are determined on the basis of all clinical data available for an individual case and are subject to change as scientific knowledge and technology advance and patterns of care evolve. Adherence to guideline recommendations will not ensure a successful outcome in every case, nor should they be construed as including all proper methods of care or excluding other acceptable methods of care aimed at the same results. The ultimate judgement must be made by the appropriate healthcare professional(s) responsible for clinical decisions regarding a particular clinical procedure or treatment plan. This judgement should only be arrived at following discussion of the options with the patient and their carer where appropriate, covering the diagnostic and treatment choices available. However, it is advised that significant departures from the national guideline or any local guidelines derived from it should be fully documented in the patient’s case notes at the time the relevant decision is taken.
This guideline was issued in 2007 and will be considered for review in three years. Any updates to the guideline in the interim period will be noted on the SIGN website: www.sign.ac.uk
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Scottish Intercollegiate Guidelines Network,
Elliott House, 8-10 Hillside Crescent,
Edinburgh EH7 5EA
Tel. 0131 623 4720 Fax. 0131 623 4503 Web contact duncan.service@nhs.net
Last modified
10/05/10
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