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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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Despite the increasing awareness of, and interest in, the nature of ASD, there are considerable gaps in training for professionals working with children and young people with ASD. This results in a lack of knowledge, skills and expertise across all general and specialist professional groups.203-209 Evidence level 4
The small body of evidence on training in ASD points to improvement in attitudes of mainstream teachers towards the inclusion of children with ASD in their classes,203, 208, 210 increased levels of confidence of parents in relation to service provision1 and in benefits in knowledge for medical staff from evidence based educational intervention.211 Evidence level 4
The PHIS Autistic Spectrum Disorders Needs Assessment Report viewed improved training as vital to many of its proposals, and recommended that there should be a review of training provision in Scotland.1 Consequently, an extensive audit of existing training and training needs was undertaken, leading to the publication of the National Training Framework for Autistic Spectrum Disorders.9 Evidence level 4
The framework highlighted major gaps in training at every level and across every sector. For most practitioners there was no pre-service training and the majority of training that was undertaken was introductory only, even for those whose work was mainly in the ASD field. Subsequent work resulted in the creation of a web-based learning resource for primary care practitioners www.nes.scot.nhs.uk/asd
D All professions and service providers working in the ASD field should review their training arrangements to ensure staff have up-to-date knowledge and adequate skill levels.
A limited amount of evidence was identified where either outcomes were not described in terms of parent satisfaction,212 there was no information on the diagnostic tool used to define the children,213 or the number of participants in the study was not clear. 214The principles that emerged were that parents felt more satisfied if at the time of disclosure they were given good quality written information, with an opportunity to ask questions213 and that parents value a multidisciplinary diagnostic assessment.214 Evidence level 4
D - Professionals should offer parents good quality written information and an opportunity to ask questions when disclosing information about their child with ASD
- Parents should be provided with information in an accessible and absorbable form.
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The information provided should relate to the child or young person’s particular ASD presentation.
Families with children with autism often experience high stress levels as a consequence of their care giving responsibilities, the child’s cognitive impairment and the need for long term support.215-218 Evidence level 4
Education and skills interventions have been shown to lead to significant improvements in the self reported mental health of parents of pre-school children.116 Evidence level 1+
B Education and skills interventions for parents of pre-school children with ASD should be offered.
Education and skills interventions should be offered to parents of all children and young people diagnosed with ASD.
Informal social supports are important to absorb family stress.219, 220 It is important to consider the needs of siblings of children and young people with ASD. Supporting parents through provision of training in communication with their children215 is discussed in section 5.1.
Professionals should assess the family context and informal support systems that are available and consider supplementing these as appropriate.
Transitions, at all stages from pre-school to adulthood, are recognised as posing challenges for children and young people with ASD. However, available evidence is very limited. A single study was identified in which telephone interviews with parents were used to capture their perceptions of transition and the support needed. 221 Parents reported that increased social work contact with families during periods of transition was valued.
Professionals should be aware that difficulties with transition may arise because the high level of support being provided prior to a transition was unrecognised. Reassessing support needs and planning ahead prior to a transition may allow appropriate new support to be put in place.
Although individual support needs will vary, some basic aspects may be generally applicable. For example, a survey of supervisors of adults with ASD employed within a supported work environment, indicated the support strategies used were based on principles largely applicable to all young people, including clear guidance, mentoring and regular reviews.222 Evidence level 4
In the Scottish legal context, ‘parental responsibility’ ends when a young person reaches the age of 16. If parents wish to continue to be involved in decisions about their child’s medical treatment, ie to be in a position to give consent or take decisions on behalf of their children beyond age 16, they can do so only by acquiring the relevant authority under the Adults with Incapacity legislation.
Families and services should plan ahead to reduce the impact of transitions.
Social work contact with families should be instituted or extended during periods of transition.
Families should be advised of relevant legislation under the Adults with Incapacity Act (Scotland).
No evidence to guide service provision was identified regarding the optimum timing of interventions. No robust evidence was found to support the benefits of early intervention or to suggest that late intervention may not be worthwhile. Some types of intervention are more appropriate at different developmental stages (see sections 5 and 6).
Interventions should commence as soon as possible after concerns are identified.
No evidence was identified to indicate whether a particular model of service provision was more effective in improving outcomes for children and young people with ASD. There appears to be a consensus in the literature that the involvement of a range of professionals is important and that the competencies of those professionals are more important than their professions as such. There appears to be agreement on the need for multiagency involvement. This is particularly relevant given the situation with regard to legal responsibilities, where for example, additional support for learning (ASL) provision is an educational responsibility and disability assessment is the responsibility of social services.
There is a danger that a piecemeal approach is taken to the delivery of services to individuals over the course of their lifetime. As a result, particularly in regard to periods of transition, there should be multiagency life long planning.
In response to the PHIS assessment report,1 the Scottish Executive has published an implementation report223 which includes a quality diagnostic service standard for children and adults with autistic spectrum disorders. This is available at www.scotland.gov.uk/Publications/2006/02/28094616/11
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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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