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Fragile X Syndrome: Supportive Treatment, Unmet Needs, and Paths to Novel Interventions and Disease-Targeted Therapies
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Berry-Kravis, Elizabeth – American Journal on Intellectual and Developmental Disabilities, 2022
Fragile X syndrome (FXS), as a monogenic cause of intellectual disability and autism spectrum disorder, has been one of the first neurodevelopmental disorders in which molecular and neuronal mechanisms of disease have been identified, leading to the concept of targeting the underlying disease to reverse symptoms. Translating findings in basic…
Descriptors: Genetic Disorders, Intellectual Disability, Autism, Pervasive Developmental Disorders
Attention Bias and Prodromal Anxiety Symptoms in Toddlers with Fragile X Syndrome and Down Syndrome
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Smith, Kayla; Hogan, Abigail L.; Will, Elizabeth; Roberts, Jane E. – American Journal on Intellectual and Developmental Disabilities, 2021
Early identification of behavioral risk markers for anxiety is essential to optimize long-term outcomes in children with neurodevelopmental disorders. This study analyzed attentional avoidance and its relation to anxiety and autism spectrum disorder (ASD) symptomatology during social and nonsocial fear conditions in toddlers with fragile X…
Descriptors: Disability Identification, At Risk Persons, Anxiety, Neurological Impairments
Behavioral Inflexibility across Two Neurogenetic Conditions: Down Syndrome and Fragile X Syndrome
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Harrop, Clare; Dallman, Aaron R.; Lecavalier, Luc; Bodfish, James W.; Boyd, Brian A. – American Journal on Intellectual and Developmental Disabilities, 2021
Behavioral inflexibility (BI) has been highlighted to occur across genetic and neurodevelopmental disorders. This study characterized BI in two common neurogenetic conditions: Fragile X syndrome (FXS) and Down syndrome (DS). Caregivers of children with FXS (N = 56; with ASD = 28; FXS only = 28) and DS (N = 146) completed the Behavioral…
Descriptors: Down Syndrome, Genetic Disorders, Neurological Impairments, Developmental Disabilities
Person Ability Scores as an Alternative to Norm-Referenced Scores as Outcome Measures in Studies of Neurodevelopmental Disorders
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Farmer, Cristan A.; Kaat, Aaron J.; Thurm, Audrey; Anselm, Irina; Akshoomoff, Natacha; Bennett, Amanda; Berry, Leandra; Bruchey, Aleksandra; Barshop, Bruce A.; Berry-Kravis, Elizabeth; Bianconi, Simona; Cecil, Kim M.; Davis, Robert J.; Ficicioglu, Can; Porter, Forbes D.; Wainer, Allison; Goin-Kochel, Robin P.; Leonczyk, Caroline; Guthrie, Whitney; Koeberl, Dwight; Love-Nichols, Jamie; Mamak, Eva; Mercimek-Andrews, Saadet; Thomas, Rebecca P.; Spiridigliozzi, Gail A.; Sullivan, Nancy; Sutton, Vernon R.; Udhnani, Manisha D.; Waisbren, Susan E.; Miller, Judith S. – American Journal on Intellectual and Developmental Disabilities, 2020
Although norm-referenced scores are essential to the identification of disability, they possess several features which affect their sensitivity to change. Norm-referenced scores often decrease over time among people with neurodevelopmental disorders who exhibit slower-than-average increases in ability. Further, the reliability of norm-referenced…
Descriptors: Developmental Disabilities, Norm Referenced Tests, Scores, Ability
Associated Risk Factors for Depression and Anxiety in Adults with Intellectual and Developmental Disabilities: Five-Year Follow Up
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Hsieh, Kelly; Scott, Haleigh M.; Murthy, Sumithra – American Journal on Intellectual and Developmental Disabilities, 2020
A better understanding of the factors associated with depression and anxiety in people with intellectual and developmental disabilities (IDD) is needed to provide guidelines for service providers, clinicians, and researchers as well as to improve the diagnostic process. The current study used a longitudinal dataset to explore demographic, health,…
Descriptors: Risk, Depression (Psychology), Anxiety Disorders, Adults
Using Medicaid Data to Characterize Persons with Intellectual and Developmental Disabilities in Five U. S. States
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McDermott, Suzanne; Royer, Julie; Cope, Tara; Lindgren, Scott; Momany, Elizabeth; Lee, Jae Chul; McDuffie, Mary Joan; Lauer, Emily; Kurtz, Stephen; Armour, Brian S. – American Journal on Intellectual and Developmental Disabilities, 2018
This project sought to identify Medicaid members with intellectual and developmental disabilities (IDD) in five states (Delaware, Iowa, Massachusetts, New York, and South Carolina) to develop a cohort for subsequent analyses of medical conditions and service utilization. We estimated that over 300,000 Medicaid members in these states had IDD. All…
Descriptors: Health Services, Federal Programs, State Federal Aid, Data
The Relationship between Pain, Self-Injury, and Other Problem Behaviors in Young Children with Autism and Other Developmental Disabilities
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Courtemanche, Andrea B.; Black, William R.; Reese, R. Matthew – American Journal on Intellectual and Developmental Disabilities, 2016
Research has suggested that individuals who engage in self-injurious behavior may have enhanced expressions of pain, which contradicts previous assertions of blunted pain sensitivity in this population. The purpose of this study was to measure expressions of pain among young children being evaluated for autism and other neurodevelopmental…
Descriptors: Injuries, Self Destructive Behavior, Behavior Problems, Young Children
Have Racial and Ethnic Disparities in the Quality of Health Care Relationships Changed for Children with Developmental Disabilities and ASD?
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Magaña, Sandra; Parish, Susan L.; Son, Esther – American Journal on Intellectual and Developmental Disabilities, 2015
The aim of this study was to determine if racial and ethnic disparities in the quality of provider interaction have changed between 2006 and 2010 for children with developmental disabilities and autism spectrum disorders (ASD). Data from the 2005/2006 and 2009/2010 National Survey of Children With Special Health Care Needs were analyzed. Results…
Descriptors: Developmental Disabilities, Autism, Pervasive Developmental Disorders, Children
Caregiver Strain and Sensory Features in Children with Autism Spectrum Disorder and Other Developmental Disabilities
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Kirby, Anne V.; White, Tamira J.; Baranek, Grace T. – American Journal on Intellectual and Developmental Disabilities, 2015
Caring for children with disabilities contributes to increased levels of parent stress or caregiver strain. However, the potential relationship of sensory features to strain among caregivers of children with autism spectrum disorder (ASD) and other developmental disabilities (DD) is unknown. Sensory features include overreactions, underreactions,…
Descriptors: Child Rearing, Children, Disabilities, Stress Variables
Reliability and Validity of the Pediatric Quality of Life Inventory with Individuals with Intellectual and Developmental Disabilities
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Viecili, Michelle A.; Weiss, Jonathan A. – American Journal on Intellectual and Developmental Disabilities, 2015
The Pediatric Quality of Life Inventory (PedsQL) measures health-related quality of life, a growing area of research, particularly among individuals with disabilities. This research is necessary to fully understand the varied needs of the population and, ultimately, ensure that those needs are being met. The current study assessed the reliability…
Descriptors: Mental Retardation, Developmental Disabilities, Children, Quality of Life
Vaccine-Related Beliefs and Practices of Parents of Children with Autism Spectrum Disorders
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Bazzano, Alicia; Zeldin, Ari; Schuster, Erica; Barrett, Christopher; Lehrer, Danise – American Journal on Intellectual and Developmental Disabilities, 2012
Although the assertion of a link between vaccines and autism has been scientifically rejected, the theory continues to be popular and may influence the attitudes of parents of children with autism spectrum disorders. The authors sought to assess how often parents change or discontinue their child's vaccine schedule after autism spectrum disorder…
Descriptors: Autism, Immunization Programs, Developmental Disabilities, Etiology
Health Care of Latino Children with Autism and Other Developmental Disabilities: Quality of Provider Interaction Mediates Utilization
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Parish, Susan; Magana, Sandra; Rose, Roderick; Timberlake, Maria; Swaine, Jamie G. – American Journal on Intellectual and Developmental Disabilities, 2012
This study examines access to, utilization of, and quality of health care for Latino children with autism and other developmental disabilities. We analyze data from the National Survey of Children with Special Health Care Needs (N = 4,414 children with autism and other developmental disabilities). Compared with White children, Latino children with…
Descriptors: Health Needs, Special Health Problems, Autism, Developmental Disabilities
Daytime Sleep Patterns in Preschool Children with Autism, Developmental Delay, and Typical Development
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Schwichtenberg, A. J.; Iosif, Ana-Maria; Goodlin-Jones, Beth; Tang, Karen; Anders, Thomas – American Journal on Intellectual and Developmental Disabilities, 2011
The present study examined daytime sleep patterns in 3 groups of preschool-aged children: children with autism, children with developmental delay, and children who were developing typically. Sleep was assessed in 194 children via actigraphy and parent-report sleep diaries for 7 consecutive days on 3 separate occasions over 6 months. Children with…
Descriptors: Sleep, Preschool Children, Autism, Developmental Delays