Rett syndrome is a severe neurodevelopmental disorder that affects about 1 in 10,000 females. Clinical trials of disease modifying therapies are on the rise, but there are few psychometrically sound caregiver-reported outcome measures available to assess treatment benefit. We report on a new caregiver-reported outcome measure, the Rett Caregiver…

Parent engagement in early behavioral intervention is essential to achieving meaningful intervention outcomes. However, parents may experience multiple barriers to engagement. The Parent-coaching Assessment, Individualization, and Response to Stressors (PAIRS) was developed to help practitioners assess families' barriers and facilitators,…

This study aimed to provide initial validity and reliability of the "Measure of NDBI Strategy Implementation-Caregiver Change" ("MONSI-CC"), a novel measure that captures changes in caregivers' implementation of NDBI strategies during early intervention. The MONSI-CC was applied to 119 observations of 43 caregiver-child dyads…

The current feasibility study examined the adherence, reliability, and assessment potential of an evidence-based game-like mobile Monitoring Tool (Akili Interactive Labs), to monitor 100 participants' cognition for eight sessions at a summer camp for children with special needs. A validated measure of attention was administered at baseline. In the…

Accurate measurement of quality of life (QoL) is important for evaluation of autism services and trials of interventions. We undertook psychometric validation of the World Health Organisation measure--WHOQoL-BREF, examined construct validity of the WHO Disabilities module and developed nine additional autism-specific items (ASQoL) from extensive…

The goal of this paper is to examine the psychometric properties of a live-coded behavioral measure of joint attention, the "Attention-Following and Initiating Joint Attention Protocol" (JA Protocol), in order to assist researchers and clinicians in identifying when this measure may meet their joint attention assessment needs. Data from…

There is a lack of validated autism-specific outcome measures for large-scale evaluation of the effectiveness of psycho-educational programmes. To fill this gap the Environment Rating Scale (ERS) was adapted from an interview version to a staff-completed questionnaire version (ERS-Q). The ERS-Q was tested regarding data quality, validity,…

The PEP-R (psychoeducational profile revised) is an instrument that has been used in many countries to assess abilities and formulate treatment programs for children with autism and related developmental disorders. To the end to provide further information on the PEP-R's psychometric properties, a large sample (N = 137) of children presenting…