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Carly Moser; Meghan M. Burke; Leann Smith DaWalt; Julie Lounds Taylor – American Journal on Intellectual and Developmental Disabilities, 2025
Parent advocacy is important for the transition outcomes of autistic youth. However, it is unclear whether parent advocacy efforts support or stifle youths' self-determination. This study examined concurrent (n = 180) and longitudinal (n = 134) associations between parent advocacy and transition-aged autistic youths' self-determination (as…
Descriptors: Self Determination, Parent Role, Advocacy, Autism Spectrum Disorders
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Amanallah Soltani; Deborah J. Fidler; Lina Patel; Kellie Voth; Anna J. Esbensen – American Journal on Intellectual and Developmental Disabilities, 2025
This study explored how caregiver-reported executive functioning domains, assessed by the BRIEF2 at baseline, predicted behavioral challenges reported by caregivers using the CBCL six months later. The sample included 94 youth with Down syndrome, aged 6 to 18 years. Results of hierarchical regression analyses revealed that, after controlling for…
Descriptors: Youth, Children, Adolescents, Down Syndrome
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Siddharth Srivastava; Kristina Johnson; Cristan Farmer; Tess Levy; Audrey Thurm; Latha Valluripalli Soorya; Rajna Filip-Dhima; Aisling Quinlan; Jonathan A. Bernstein; Elizabeth Berry-Kravis; Craig M. Powell; Joseph D. Buxbaum; Mustafa Sahin; Alexander Kolevzon – American Journal on Intellectual and Developmental Disabilities, 2025
Phelan-McDermid syndrome (PMS), caused by "SHANK3" haploinsufficiency, lacks natural history data. We report the trajectory of adaptive behavior from a prospective, longitudinal, natural history study. English-speaking people aged 3-21 years with a PMS molecular diagnosis were followed over 2 years. We analyzed longitudinal Vineland…
Descriptors: Genetic Disorders, Children, Adolescents, Young Adults
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Rose E. Nevill; Gail E. Lovette; Katherine J. Bateman; Natalie M. Badgett; Genevieve R. Lyons; Emily C. Fuhrmann; Genevieve E. Bohac; Karen G. Orlando; Keith D. Page – American Journal on Intellectual and Developmental Disabilities, 2025
Children with neurodevelopmental disorders (NDD) are at high risk of challenging behavior, yet families experience consistent barriers to affordable parent education in behavior management. This study tested the efficacy of a caregiver-focused Extensions of Community Health Outcomes (ECHO) program in delivering behavior management education and…
Descriptors: Neurodevelopmental Disorders, Behavior Problems, Parent Education, Behavior Modification
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Elizaveta Dimitrova; Athanasia Kouroupa; Vasiliki Totsika – American Journal on Intellectual and Developmental Disabilities, 2025
Resilience in families of autistic children and children with intellectual disability is associated with factors such as family functioning, social support, and financial strain. Little is known about family resilience during the COVID-19 pandemic when many resources were limited. This study examined the association of family resilience with child…
Descriptors: Autism Spectrum Disorders, Resilience (Psychology), Intellectual Disability, COVID-19
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Hannah Singer; Elaine B. Clarke; Hillary K. Schiltz; Catherine Lord – American Journal on Intellectual and Developmental Disabilities, 2025
This 10-year study followed 134 caregivers of young adults with autism and intellectual disability, examining the effects of caregivers' coping strategies, sociodemographic features, and young adult symptomatology on caregiver well-being and depression. Lower caregiver education and higher young adult externalizing behaviors predicted lower…
Descriptors: Caregivers, Coping, Developmental Disabilities, Young Adults