SIGN Guideline 98: Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders

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9 Implementation, resource implications and audit

9.1 LOCAL IMPLEMENTATION

Implementation of national clinical guidelines is the responsibility of each NHS Board and is an essential part of clinical governance. It is acknowledged that every Board cannot implement every guideline immediately on publication, but mechanisms should be in place to ensure that the care provided is reviewed against the guideline recommendations and the reasons for any differences assessed and, where appropriate, addressed. These discussions should involve both clinical staff and management. Local arrangements may then be made to implement the national guideline in individual hospitals, units and practices, and to monitor compliance. This may be done by a variety of means including patient-specific reminders, continuing education and training, and clinical audit.

9.2 RESOURCE IMPLICATIONS

Group members identified the following recommendations which may have resource implications for NHSScotland.

From section 3.2.3

C ASD-specific history-taking instruments may be considered as a means of improving the reliability of ASD diagnosis.

 

C Healthcare professionals should consider using ASD-specific observational instruments, as a means of improving the reliability of ASD diagnosis.

The use of such instruments requires training for staff. At present the availability of such training courses is limited. Resources are required for trainers, attendance at courses and updates, training materials and equipment for ADOS-G (kit cost £1300, training pack £700).

From section 3.2.3

D Health care professionals should directly observe and assess the child or young person’s social and communication skills and behaviour.

From section 3.4

D Where clinically relevant, the need for the following should be reviewed for all children and young people with ASD:

• examination of physical status, with particular attention to neurological and dysmorphic features
• karyotyping and Fragile X DNA analysis
• examination of audiological status
• investigations to rule out recognised aetiologies of ASD (eg tuberous sclerosis, see annex 3).

From section 3.5

C Clinicians should be aware of the need to routinely check for comorbid problems in children and young people with ASD. Where necessary, detailed assessment should be carried out to accurately identify and manage comorbid problems.

Implementation of these recommendations is likely to require local services to look at the organisation of child and adolescent services to ensure that relevant investigations and assessments are undertaken for all children with ASD. In some areas this may lead to a requirement for additional sessions of some staff groups, such as those providing cognitive assessment, to avoid an effect on waiting times for patients with other conditions.

From section 3.3

D All children and young people with ASD should have a comprehensive evaluation of their speech and language and communication skills, which should in turn, inform intervention.

D Children and young people with ASD should be considered for assessment of intellectual, neuropsychological and adaptive functioning.

 

From section 5.2

D Interventions to support communication in ASD are indicated, such as the use of visual augmentation, eg in the form of pictures of objects.

From section 5.2.2

D Interventions to support social communication should be considered for children and young people with ASD, with the most appropriate intervention being assessed on an individual basis.

From section 5.3.2

B Behavioural interventions should be considered to address a wide range of specific behaviours in children and young people with ASD, both to reduce symptom frequency and severity and to increase the development of adaptive skills.

These recommendations may require additional sessions from speech and language therapists and clinical psychologists in some areas of Scotland. This may have a resultant effect on waiting times for patients with other conditions.

From section 7.1

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.

Implementation of this recommendation is likely to require resources for trainers, attendance at courses and updates and training materials and equipment.

9.3 KEY POINTS FOR AUDIT

The following clinical indicators could be used to gauge the assessment and management of children and young people with ASD:

• referral routes for diagnosis of ASD, eg the number of children recommended for further assessment following child health surveillance, the use of CHAT or M-CHAT to identify clinical features indicative of an increased risk of ASD
• diagnostic criteria, and procedures used for diagnosis of ASD, eg the number of professionals using either ICD-10 or DSM-IV when making the diagnosis of ASD, the number of children having all appropriate diagnostic measures done eg the availability of information about children and young people’s functioning from sources outside the clinic setting
• additional assessments of children and young people with diagnoses of ASD, eg the proportion of children and young people with ASD who have a comprehensive evaluation of their speech and language and communication skills, intellectual, neuropsychological and adaptive functioning, physical or other assessments if relevant
• treatment of sleep problems including baseline sleep diaries, use of behavioural therapy
• pharmacological treatment provision and monitoring - access to pharmacy support, weight monitoring if risperidone prescribed
• proportion of parents offered post-diagnosis training, proportion receiving social work support, nature of preparation for transitions
• information provision - type and timing of information provided for children, young people, families and relevant professionals
• training of staff - generic and ASD specific.

9.4 RECOMMENDATIONS FOR RESEARCH

Further research is required to address numerous areas where there is insufficient evidence to make a recommendation or to support existing clinical practice. The following areas have been identified as especially important:

Recognition, assessment and diagnosis

• Psychiatric comorbidity in children and adolescents with ASD
• Development/validation of ASD screening instruments that meet the rigorous criteria for a robust population screening test
• What is the minimum age at which ASD can be reliably diagnosed?
• Improved evidence on the reliability and validity of the existing classification systems, ICD-10 and DSM-IV
• Which parallel assessment tools (eg speech and language, communication, neuropsychological) to use and when
• Research into the role of biomedical investigations in identifying the aetiology of ASD.

Non-pharmacological interventions

• What is the efficacy of biomedical interventions, including diets and nutritional supplements?
• What is the efficacy of non-pharmacological interventions?
• Are there any specific dietary/non-pharmaceutical interventions that are more appropriate for children with specific forms of ASD, or particular types of comorbidity?
• What is the optimal timing of interventions? Are there benefits from early intervention?
• The role of occupational therapy and physiotherapy for children and young people with ASD, in particular at assessment
• The role of music therapy for children and young people with ASD
• The role of environmental adaptation.

Pharmacological interventions

• Melatonin use
• Further risperidone studies and systematic reviews/meta-analysis
• Long term effectiveness of medication, including potential synergistic effects with other interventions
• More research is needed on the use of fluoextine and other selective serotonin reuptake inhibitors.

Service provision

• Are particular models of service provision more effective in improving outcomes for children and young people with ASD?
• How are transitions, at all stages from pre-school to adulthood, best managed?
• The role of multidisciplinary or multiagency teams
• What comprises effective training in ASD for professionals?

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