This study examined the role of parent expectations and adaptive behavior in predicting outcomes for youth with intellectual disability. The study addresses the following research aims: (1) Describe post-school outcomes and parent expectations for individuals with mild and moderate/severe intellectual disability, (2) Determine the relationship of adaptive functioning and parent expectations to post-school outcomes (i.e., postsecondary education, employment, and independent living) for individuals with intellectual disability, and (3) Compare these relationships to the ones that have been identified in previous research on autism spectrum disorder and determine whether these constructs operate similarly or differently in a sample with intellectual disability. Data from the National Longitudinal Transition Study-2 (NLTS2) was used to address these aims. A sample of students with intellectual disability, but without a co-occurring autism spectrum disorder, were selected for inclusion in the study. Four latent variables were created using data from Waves 1, 2, and 5 of data collection: demographic factors, adaptive behavior, parent expectations, and post-school outcomes. Structural equation modeling was used to test structural models of the relationships between these constructs. Results indicate that post-school outcomes for youth with intellectual disability are worse than outcomes for youth with other types of disabilities overall, and that outcomes for those with moderate/severe intellectual disability are significantly worse than for those iii with mild intellectual disability. Results from structural equation modeling indicate that, for youth with intellectual disability, adaptive behavior is more important than parent expectations in predicting post-school outcomes. The relationship between these variables appears different for those with intellectual disability than for other types of disabilities, such as autism spectrum disorder. Results support the conclusion that adaptive behavior plays a critical role in post-school success for individuals with intellectual disability and that parent expectations alone are insufficient to ensure positive outcomes for youth with poor adaptive skills. Implications for clinical practice and future research are discussed. First and foremost, I would like to thank my advisor, Marc J. Tassé, for his constant guidance and support on this project and throughout my graduate career as a whole. I am also grateful to my committee members, Dr. Susan Havercamp and Dr. Andrew Persch, for their insightful comments and feedback throughout this process. I would additionally like to thank Dr. Persch for graciously allowing me access to the NLTS2 data through his restricted-use license, without which this project would have been impossible. I also extend sincere gratitude to Dr. Anne Kirby, who answered my countless questions about NLTS2 data and has been a wonderful source of support. Thank you to Dr. Robert Cudeck and Nicholas Rockwood for the constant guidance, advice, and encouragement ...

BACKGROUND: Parent expectations are known to be significant predictors of postsecondary outcomes among youth with disabilities. However, little is known about the relationship between parent and youth expectations and their differential prediction of postsecondary outcomes among youth with disabilities. OBJECTIVE:To determine the relationship between parent and youth expectations among students with disabilities in the United States. METHODS:Through analysis of the National Longitudinal Transition Study-2 (NLTS2), we compared wave two parent and youth expectations across disability categories (N=1,940) and explored the extent to which they predicted youth postsecondary outcomes. RESULTS:We identified that parent and youth expectations are related but significantly different, with parents consistently holding less independent expectations than youth. Both parent and youth expectations were identified as significant predictors of postsecondary outcomes, with youth expectations more strongly predicting education and independent living outcomes, and parent expectations more strongly predicting employment and Social Security benefit outcomes. CONCLUSIONS:Transition providers should work with parents and youth to develop collaborative goals and expectations to best support youth with disabilities for independent activities in adulthood.

Objective To identify and summarize clinical practice guidelines for autism spectrum disorder (ASD) and intellectual disability (ID) for the Package of Interventions for Rehabilitation for the World Health Organization (WHO). Data Sources Academic databases, Google Scholar, guideline databases, and professional society websites were searched using the general criteria “ASD/ID” AND “rehabilitation” AND “guideline,” restricted to English-only guidelines. Study Selection Work group members independently screened titles and abstracts (1952 ASD; 1027 ID) and excluded articles if not (1) a guideline; (2) about rehabilitation; (3) published since 2008; or (4) about ASD/ID. Full-text screening (29 ASD; 5 ID) involved 3 additional exclusion criteria: (1) contained conflict of interest; (2) lacked information on strength of recommendation; or (3) failed the Appraisal of Guidelines for Research and Evaluation II instrument. Six guidelines (4 ASD: 2 on youth, 1 on adults, 1 on all ages; 2 ID: 1 on challenging behaviors, 1 on mental health) resulted. Data Extraction Work group members extracted 524 recommendations (386 ASD; 138 ID) from the guidelines including the level of evidence, diagnostic and age group, recommendation type (assessment, intervention, service), target, and valence. Data Synthesis Of the 270 intervention recommendations (212 ASD; 58 ID), only 36 for ASD and 47 for ID were empirically based. Most comprised biomedical (23%), pharmacologic (29%), and psychosocial (21%) interventions for ASD and behavioral (14%), pharmacologic (29%), and psychological (14%) interventions for ID. Intervention recommendations primarily targeted coexisting conditions (56% ASD; 93% ID), whereas core symptoms received much less attention (26% ASD). Conclusions Clinical practice guidelines reviewed for ASD and ID primarily contained recommendations based on expert opinion, with the plurality of recommendations relating to pharmacologic treatment. Vital next steps include identifying relevant interventions for inclusion in the WHO Package and continuing to conduct rigorous intervention research, particularly on core symptoms of these conditions, to extend recommendations for high-quality guidelines.

Objective: Autism spectrum disorder (ASD) and intellectual disability (ID) were selected for inclusion in the development of a Package of Interventions for Rehabilitation for the World Health Organization (WHO). Here, we describe results of a search of guidelines for these conditions. Methods: A literature search for clinical practice guidelines was performed for ASD and ID. Using the Appraisal of Guidelines for Research and Evaluation instrument and other inclusion and exclusion criteria, guidelines were identified for abstraction of recommendations, which were collated into categories based on diagnosis, patient age, type and target of service, valence, and level of evidence. Results: Six guidelines remained after screening. Four ASD guidelines focused on diagnosis, management and support, and two ID guidelines covered the prevention, assessment, and management of challenging behavior and mental health problems, with 386 and 138 recommendations resulting for each group, respectively. Out of 524 total recommendations, 212 ASD and 58 ID recommendations focused on intervention. The primary type of intervention pertained to pharmacology for each group (27% ASD, 29% ID), followed by psychosocial (21%) and biomedical (23%) for ASD and behavioral (14%) and psychological (14%) for ID. Regarding target of intervention, recommendations primarily focused on coexisting conditions for each group (56% ASD, 93% ID) and core symptoms for ASD (26%), whereas adaptive functioning received little attention (11% ASD, 7% ID). Conclusions: Although these six guidelines provided many recommendations for comorbid and specific problems in ASD and ID, very few recommendations targeted core symptoms, and many were based on expert opinion. A vital next step includes identifying relevant interventions from the guidelines or that are missing to be included in the WHO Package of Interventions for Rehabilitation.