Development of a Functional Classification System for Children with Autism Spectrum Disorder: Starting the Process

Background: Despite the availability of measures to assess the symptoms of children with autism spectrum disorder (ASD), none has reliably and validly described ASD along a spectrum of functional ability. Clinical diagnostic tools such as the Autism Diagnostic Observation Schedule, the Child Autism Rating Scale and the Autism Diagnostic Interview- Revised aim to discriminate children with ASD from children with other disabilities. Furthermore, ASD classification has also focused on identifying multi-dimensional phenotypes that are potentially relevant to describe symptom severity. One area that has not been examined is how a diagnosis of autism translates in terms of a child’s functional abilities. This focus of classifying functional ability has been prevalent in the study of cerebral palsy (CP) since the late 1990’s. Research in CP has led to the creation of condition-specific discriminative systems to classify the levels of gross motor function (GMFCS) and manual ability (MACS), with a communicative function system currently under development. This array of functional measures aims to describe, classify, and predict function, as well as to evaluate change in status over time. An analogous system for ASD (the AFCS) would provide an internationally acceptable method of stratifying function in children and improving communication with families and professionals about abilities and needs.

Objectives: To develop a survey for experts working with pre-school children with ASD to establish an initial draft of an Autism Function Classification System (AFCS).Methods: The process of creating the initial draft of the AFCS included a scoping review of the literature to assist with the development of the questions. The review involved a search of health care databases (1980-2008); consultations with expert clinicians and researchers; and a review of classifications used in clinical practice. The principles of survey development were based on the Dillman method, and surveys will be completed online.

Results: The survey instrument will explore the following questions (with appropriate response options): What methods do you use to diagnose ASD? Do you diagnose on a multi-disciplinary team? What are the salient functional and behavioural features of ASD that you consider with a 3-4 year old who may have the condition? How important are language abilities/cognitive function/social behaviours/ repetitive behaviours in making the diagnosis of ASD (score 1-5)? Do you assign higher weighting to specific symptoms (rank in order of importance)? Do you give consideration to functional or qualitative evaluation of ability? Do you use the terms ‘high functioning’ or ‘low functioning’ when describing a child with ASD? What are the characteristics of these subgroups?

Conclusions: It is unclear from the literature and clinical practice how functional ability is described within the current systems of ASD classification. The developed survey aims to establish the key attributes that characterize the functional severity of a child with ASD to form an initial draft of the AFCS. A select group of international expert respondents have agreed to participate in the web-survey. The interactive poster will discuss the results of the analysis of survey responses and will use the format to welcome further input based on emerging follow-up questions.