Adrienne Perry

Psychometric validity and clinical usefulness of the Vineland Adaptive Behavior Scales and the AAMD Adaptive Behavior Scale for an autistic sample.

Two prominent assessment measures of adaptive behavior were compared and evaluated in terms of their psychometric properties and their clinical usefulness for autistic children and adolescents. The AAMD Adaptive Behavior Scale-School Edition (Lambert & Windmiller, 1981) and the Vineland Adaptive Behavior Scales (Sparrow, Balla, & Cicchetti, 1984) were compared in 15 autistic persons aged 8 to 18. Correlations between the two instruments revealed good concurrent validity. The psychometric properties of the tests were similar to those found in samples of mentally retarded persons. The use of adaptive behavior measures for autistic children and adolescents is encouraged. Clinical advantages and disadvantages of the two tests are discussed.

Multiple method validation study of facilitated communication, II : Individual differences and subgroup results

Potential individual variations in the effectiveness of a shared communication method, facilitated communication (FC), were examined among 20 students with autism and related disorders. To minimize the limits or disadvantages of a single method, we used multiple methods, including auditory or visual input, and simple pointing responses to pictures or words, as well as typing. Data were collected after 6 weeks of FC, and follow-up data up to 7 months later. Findings differed across methods, but there was little clear support for the validity of FC in enhancing communication over communication that students produced independently. Significant facilitator influence of responses was found, but was far less extensive than in other studies. However, an “abdication” pattern of responding was found for some students, in which high performance observed with independent responding was lessenedon trials when FC was introduced. That is, these students may become more passive communicators when FC is used. The complex detected and undetected influences in the process of communication through facilitation are discussed, as well as risk factors in the use of FC.

Brief report: Stress, social support, and respite care use in families with autistic children

The purpose of the present study was to investigate boh child functioning and family stress variables in relation to use of respite care in TREADD (Treatment, Research, and Education for Autism and Developmental Disorders) families

Predictors of distress and well-being in parents of young children with developmental delays and disabilities: the importance of parent perceptions

BACKGROUND Moving from family-centred to child-centred models of service delivery can be stressful for parents as their young children with developmental delays and disabilities transition into school. The purpose of this paper was to explore and compare predictors of both distress and well-being in parents during this transition period. METHODS A sample of 155 mothers of 113 boys and 42 girls participated in the study. The mean age of the children was 4.9 years and their diagnoses included autism spectrum disorder (52%); unspecified intellectual disability/developmental delay (26%); Down syndrome (12%); other genetic conditions (4%) and other diagnoses (6%). Participants completed surveys primarily online focusing on child characteristics, family resources, parent coping strategies, parental distress and positive gain. RESULTS Multiple regression analyses were conducted to determine predictors of parent reported distress and positive gain. Parent coping variables were the strongest predictors of both positive gain and parental distress, with reframing emerging as a predictor of positive gain and parent empowerment emerging as a predictor of both greater positive gain and lower parental distress. CONCLUSIONS The results of this study highlight not only the importance of including positive as well as negative outcomes in research with parents but also the importance of including parent characteristics such as coping strategies (e.g. reframing and empowerment/self-efficacy) as potential predictors of outcome in such studies.

Review of Factor Analytic Studies Examining Symptoms of Autism Spectrum Disorders

Factor analytic studies have been conducted to examine the inter-relationships and degree of overlap among symptoms in Autism Spectrum Disorder (ASD). This paper reviewed 36 factor analytic studies that have examined ASD symptoms, using 13 different instruments. Studies were grouped into three categories: Studies with all DSM-IV symptoms, studies with a subset of DSM-IV symptoms, and studies with symptoms that were not specifically based on the DSM-IV. There was consistent support for a common social/communication domain that is distinct from a restricted and repetitive behaviours and interests domain. Implications for symptom conceptualization and diagnosis in ASD are discussed.

Examining the social participation of children and adolescents with Intellectual Disabilities and Autism Spectrum Disorder in relation to peers.

BACKGROUND Participation in social and physical activities has a number of benefits for children with or without disabilities. However, individuals with disabilities are often excluded from taking part in social activities. Most of the research on activity participation has focused on adults or youth with milder disabilities. However, children and adolescents with severe and complex needs, including those with autism, are often excluded from this type of research because of their complexities and level of functioning. Thus, we examined the social participation and friendships of children and adolescents with severe developmental disabilities, with and without autism, compared with peers without developmental disabilities. METHODS We compared the activity participation and friendships of typically developing children (n = 210), children with an intellectual disability (ID only; n = 186), and children with autism spectrum disorder plus intellectual disability (ID + ASD; n = 232) between the ages of 3 and 19 years. Parents of these children completed a survey, which included questions about their childrens participation in six activities, and the number and quality of their childrens friendships. RESULTS Children and adolescents with ID only and ID + ASD were reported to participate in significantly fewer activities and to participate much less frequently than typically developing peers. Those with ID only and ID + ASD were reported to have fewer friends and poorer quality of friendships. In addition, those with ID + ASD participated even less frequently in some activities and had fewer friends relative to those with ID only. CONCLUSION It is important to find ways to increase the social and activity participation of children and adolescents with ID only and ID + ASD. Future research should examine the barriers to such participation and factors that impact social participation in this population.

Validity of the Family Quality of Life Survey-2006

BACKGROUND Family Quality of Life (FQOL) is an important construct in the Intellectual Disabilities field. Several measures exist, including one developed by an international group, the Family Quality of Life Survey-2006 (FQOLS-2006; Brown et al.2006). However, the psychometric properties of this measure have yet to be fully investigated. This study was designed to examine its concurrent validity compared to the well established Beach Center FQOL Scale. MATERIALS AND METHODS In a sample of 62 families of school-aged Canadian children with intellectual disability and/or autism spectrum disorder, both the FQOLS-2006 and the Beach Center FQOL scale were administered and the scores compared. RESULTS The total scores of the two measures were strongly correlated, as were particular subscales that would be expected to correlate. However, there were several surprising correlations as well. CONCLUSIONS The FQOLS-2006 shows good concurrent validity relative to the Beach Center scale, although some domains show unexpected relationships, suggesting further research is needed.

Follow-Up Study of Youth Who Received EIBI as Young Children:

Although early intensive behavioral intervention (EIBI) has been clearly shown to be evidence-based, there is very little information available regarding long-term outcomes, especially from community effectiveness studies. We present data on cognitive, adaptive, and autism severity measures from four time points (pre- and post-EIBI and two follow-up points) for a sample of 21 youth, currently aged 16 years on average (range = 13-20) who received EIBI as young children and who have been out of EIBI for a mean of 10 years (range = 8.5-14). Results show heterogeneous outcomes and a general pattern of stability since the end of EIBI, suggesting gains made in EIBI are maintained.

The Quality of Life of Children with Severe Developmental Disabilities.

BACKGROUND Research examining the quality of life (QoL) of children with severe developmental disabilities (SDD) is limited. The present study examines parent perceptions of child QoL in children with SDD compared with typically developing (TD) children and then examines predictors of QoL for the SDD group. METHOD Parents of 246 children with SDD (aged 4 to 19 years) and 210 TD children (aged 4 to 18 years) responded to an online survey. QoL was measured using a composite variable composed of the childs happiness, achievement of potential and friendship quality. RESULTS Children with DD had lower QoL ratings than TD children. In children with DD, higher QoL was related to younger age, higher adaptive skills, lower maladaptive behaviour, lower parent psychological distress and higher satisfaction with the childs education. CONCLUSIONS Interventions to promote positive outcomes for children with SDD should target both characteristics of the individual and the environment.

The GO4KIDDS Brief Adaptive Scale

BACKGROUND Accurate measurement of adaptive behaviour is important in both clinical and research contexts. While several good clinical measures exist, as well as brief research measures for adults with intellectual disability, there is need for a brief and efficient measure for research with children and youth. We present preliminary psychometric properties of a new scale we developed for such purposes, the GO4KIDDS Brief Adaptive Behaviour Scale. MATERIALS AND METHODS A large sample (n = 432) of parents of youth (aged 3-20) with intellectual disability and/or ASD completed an online survey that included the new scale. A subsample of these parents (n = 204) also completed the Scales of Independent Behavior-Revised Short Form (Scales of Independent Behavior-Revised Comprehensive Manual, 1996 and Riverside Publishing). RESULTS The new scale has good internal consistency and correlates strongly with the Scales of Independent Behavior, thus supporting its reliability and validity. CONCLUSIONS Although we do not recommend its use for clinical purposes, the GO4KIDDS Brief Adaptive Behaviour Scale may be useful for survey research with parents of children and youth with developmental disabilities.