NumberResearch recommendation
RR 2Does routine additional information from educational settings (such as nursery or school) improve accuracy in diagnosing autism among children or young people up to the age of 19 compared with signs and symptoms alone?

Why this is needed
The term autism includes conditions primarily characterised by difficulties in social reciprocity, social communication and social understanding, along with rigid and repetitive ways of thinking and behaving. Diagnostic accuracy may be improved by interpreting information about how the child or young person presents in social settings away from the home and immediate family.
Nurseries or schools are the most obvious settings from which such information may be collected. However, the degree to which information from teachers and schools helps in accurate diagnosis has not been well tested.

Importance to ‘patients’ or the population
Parents commonly request that information from different sources/settings be used in making a diagnosis preferring a ‘holistic’ approach to their child’s assessment.
Collecting information from multiple sources, as part of the autism diagnostic assessment, would also negate the need for sequential assessments in different settings.
Care should be taken to request informed consent before information is collected as some parents/young people may not wish concerns to be shared.

Relevance to NICE guidance
The NCC-WCH 2011 guidance recommends that there should be a local autism strategy group with representation from education.
An educational psychologist is also named as a member of the core autism diagnostic team.

Relevance to the NHS
Improving diagnostic accuracy may result in cost saving for the NHS by reducing the need for re-assessments and by standardizing diagnostic practice across the UK.
The resulting closer links with educational organizations could facilitate better use of resources and help target appropriate management be it in healthcare or educational setting.

National priorities
This is also a national priority area in the Special Education Needs Green Paper (clause 13) that describes the need for a joint education, health and social care plan for children and young people with an SEN by 2014.
The Autism Act (2009) and the Statutory Guidance (2010) have highlighted autism as a national priority for the NHS and social care.

Current evidence base
There is little systematic research comparing routine use of school/preschool information before or subsequent to diagnostic assessment

Equality
Children being home-schooled are often under-diagnosed unless attempts are made to collect information from other sources in these cases.

Feasibility
A prospective randomized controlled trial of additional information from another setting alongside an autism diagnostic assessment in a single district compared with an autism diagnostic assessment alone in a second matched district.
Time needed 36 months
Outcomes to include –
  • time taken to diagnosis
  • number of children diagnoses with autism
  • number of coexisting conditions identified
  • number of children with a differential diagnosis
  • cost-effectiveness of additional assessments
  • acceptability/satisfaction with diagnostic process
Other comments
No other comments

From: 4, Following referral

Cover of Autism
Autism: Recognition, Referral and Diagnosis of Children and Young People on the Autism Spectrum.
NICE Clinical Guidelines, No. 128.
National Collaborating Centre for Women’s and Children’s Health (UK).
London: RCOG Press; 2011 Sep.
Copyright © 2011, National Collaborating Centre for Women’s and Children’s Health.

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