Support Intensity Scale Profile in Autism : A Proof of Concept Study

Background:

Tailoring supports for individual needs in disability requires tools that reliably and validly measure those needs. That is the function of the Supports Intensity Scale for children (SIS-C) developed from the American Association on Intellectual and Developmental Disabilities. SIS-C measures the individual’s support needs in personal, work-related and social activities in order to identify and describe the types and intensity of the support an individual requires. SIS has been designed to be part of person-centered planning processes that help all individuals identify their unique preferences, skills and life goals.

Objectives:

The aim of the study is to assess the SIS-C profile in Autism in comparison with Intellectual and Developmental Disability (IDD) not related to autism.

Methods:

We have applied the Italian Version of SIS, during the process of Italian psychometric validation, to a group of children and adolescents with different kinds of neuropsychiatric disorders in a multicenter study carried out in13 units throughout the Italian territory. This paper presents the data concerning two specifics subgroup of 127 individuals with autism (mean age 9.76; range 4-17 years) and 62 persons with IDD not related to autism (mean age 11.33; range 5 – 16 years). Seven support need dominions have been explored through independently structured interviews, whereby the two principal caregivers for each subject in this study responded to a total of 61 items covering: home living, community and neighborhood, scholastic participation and learning, health and safety as well as social and advocacy activities. Results are expressed as a percentage of maximum theoretic support need in each dominion.

Results:

The score profiles obtained from the interview of two caregivers resulted highly correlated in all dominions of the scale (r values ranging from 0.85 to 0.95). Individuals with AUTISM, despite an average level of intellectual disability similar to that individuals without autism diagnosis showed degrees of support need that were significantly higher than subjects in the comparison group for all dominions (see figure 1), with absolute differences ranging from +33% to +61% (mean +42%). As expected, the difference was particularly evident for home living, social activity, and community and neighborhood dominions.

Conclusions:

Traditionally, a person's level of developmental disability has been measured by the skills the individual lacks. SIS-C shifts the focus from shortfalls to needs. The scale evaluates practical support people with developmental disabilities need to lead independent lives. The key message emerging from our study is that, given a similar level of intellectual function, special needs in individuals with AUTISM are around 40% higher than those in subjects with IDD not associated to autism.