1. Benevides TW, Lee J, Nwosu NAO, Franks J. {{Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs}}. {Maternal and child health journal}. 2019.
Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.
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2. Chu CH, Tsai CL, Chen FC, Sit CHP, Chen PL, Pan CY. {{The role of physical activity and body-related perceptions in motor skill competence of adolescents with autism spectrum disorder}}. {Disabil Rehabil}. 2019: 1-9.
PURPOSE: This study assessed the associations of motor skill competence with physical activity and physical self-perception of adolescents with autism spectrum disorder (ASD). STUDY DESIGN: Cross-sectional study. METHODS: A total of 63 male adolescents, aged 12-18 years, with ASD participated in the study. The Bruininks-Oseretsky Test of Motor Proficiency-Second Edition and the Chinese version of the Physical Self-Perception Profile were administered. Physical activity was assessed using a uniaxial accelerometer. RESULTS: The main findings were that (a) both moderate-to-vigorous physical activity and self-perceived physical condition were positively related to manual coordination (MC) and strength and agility (SA); (b) moderate-to-vigorous physical activity was the only predictor of MC and accounted for 14% of the variance; and (c) perceived physical condition explained 16% of the variance in SA, and moderate-to-vigorous physical activity and perceived physical condition together accounted for 26% of the SA. CONCLUSION: Future interventions aimed at improving motor skill competence in adolescents with ASD should focus on improving the time spent on moderate-to-vigorous physical activity and developing a positive perceived physical condition. Implications for rehabilitation Less than half of the participants with ASD accumulated at least 60 min of daily moderate-to-vigorous physical activity. Of the participants with ASD, only 19% had clinical levels of total motor impairments. Activities that promote successful moderate-to-vigorous physical activity and support positive physical self-perception (i.e., physical condition) are most likely to develop motor skill competency in adolescents with ASD.
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3. Croteau C, Ben Amor L, Ilies D, Mottron L, Tarride JE, Dorais M, Perreault S. {{Impact of Psychoactive Drug Use on Developing Obesity among Children and Adolescents with Autism Spectrum Diagnosis: A Nested Case-Control Study}}. {Childhood obesity (Print)}. 2019.
BACKGROUND: Obesity in children on the autism spectrum (AS) is becoming a significant health concern. The purpose of this study was to identify the predictors of obesity in a cohort of AS youth and to assess the impact of psychoactive medication use while exploring the second-generation antipsychotics (SGAs) dose-response curve. STUDY DESIGN: A nested case-control study was conducted using Quebec public administrative databases. Subjects with AS <18 years [>/=2 diagnoses International Classification of Diseases: 9th revision (ICD-9): 299.X] were identified (January 1993 to May 2011). Cases were defined as subjects with an obesity diagnosis (ICD-9: 278.X) during the coverage period and matched to 10 controls for age, gender, and follow-up duration. Potential risk factors for obesity (sociodemographic characteristics, other neuropsychiatric conditions, and psychoactive drug use) were evaluated and analyzed using conditional logistic regression. RESULTS: From a cohort of 5369 AS subjects, we identified 135 obesity cases. Among the different risk factors, only SGAs [rate ratio (RR): 1.04, 95% confidence interval (CI): 1.01-1.07] increased the probability of obesity in multivariate analysis. Exposure for >/=12 months increased significantly the likelihood of obesity (RR: 2.01, 95% CI: 1.18-3.42). Higher risk was observed with chlorpromazine-equivalent daily doses >/=100 mg (RR: 2.20, 95% CI: 1.00-4.84). Among SGA users, concomitant antidepressants (per 30-day exposure) slightly increased the probability (RR: 1.08, 95% CI: 1.01-1.15). CONCLUSIONS: Longer and higher SGA exposure increased the risk of obesity, which has to be considered in relation to the paucity of evidence supporting long-term psychoactive medication use in AS children. Results highlight the need to promote optimal use and interventions to mitigate metabolic side effects of SGAs in this population.
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4. Dimond D, Schuetze M, R ES, Dhollander T, Cho I, Vinette S, Ten Eycke K, Lebel C, McCrimmon A, Dewey D, Connelly A, Bray S. {{Reduced White Matter Fiber Density in Autism Spectrum Disorder}}. {Cereb Cortex}. 2019.
Differences in brain networks and underlying white matter abnormalities have been suggested to underlie symptoms of autism spectrum disorder (ASD). However, robustly characterizing microstructural white matter differences has been challenging. In the present study, we applied an analytic technique that calculates structural metrics specific to differently-oriented fiber bundles within a voxel, termed « fixels ». Fixel-based analyses were used to compare diffusion-weighted magnetic resonance imaging data from 25 individuals with ASD (mean age = 16.8 years) and 27 typically developing age-matched controls (mean age = 16.9 years). Group comparisons of fiber density (FD) and bundle morphology were run on a fixel-wise, tract-wise, and global white matter (GWM) basis. We found that individuals with ASD had reduced FD, suggestive of decreased axonal count, in several major white matter tracts, including the corpus callosum (CC), bilateral inferior frontal-occipital fasciculus, right arcuate fasciculus, and right uncinate fasciculus, as well as a GWM reduction. Secondary analyses assessed associations with social impairment in participants with ASD, and showed that lower FD in the splenium of the CC was associated with greater social impairment. Our findings suggest that reduced FD could be the primary microstructural white matter abnormality in ASD.
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5. Hong MP, Eckert EM, Pedapati EV, Shaffer RC, Dominick KC, Wink LK, Sweeney JA, Erickson CA. {{Differentiating social preference and social anxiety phenotypes in fragile X syndrome using an eye gaze analysis: a pilot study}}. {J Neurodev Disord}. 2019; 11(1): 1.
BACKGROUND: Fragile X syndrome (FXS) is the leading inherited cause of autism spectrum disorder, but there remains debate regarding the clinical presentation of social deficits in FXS. The aim of this study was to compare individuals with FXS to typically developing controls (TDC) and individuals with idiopathic autism spectrum disorder (ASD) across two social eye tracking paradigms. METHODS: Individuals with FXS and age- and gender-matched TDC and individuals with idiopathic ASD completed emotional face and social preference eye tracking tasks to evaluate gaze aversion and social interest, respectively. Participants completed a battery of cognitive testing and caregiver-reported measures for neurobehavioral characterization. RESULTS: Individuals with FXS exhibited reduced eye and increased mouth gaze to emotional faces compared to TDC. Gaze aversive findings were found to correlate with measures of anxiety, social communication deficits, and behavioral problems. In the social interest task, while individuals with idiopathic ASD showed significantly less social preference, individuals with FXS displayed social preference similar to TDC. CONCLUSIONS: These findings suggest fragile X syndrome social deficits center on social anxiety without the prominent reduction in social interest associated with autism spectrum disorder. Specifically designed eye tracking techniques clarify the nature of social deficits in fragile X syndrome and may have applications to improve phenotyping and evaluate interventions targeting social functioning impairments.
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6. Howard K, Katsos N, Gibson J. {{Using interpretative phenomenological analysis in autism research}}. {Autism}. 2019: 1362361318823902.
Qualitative studies within autism research are gaining prominence, yet there is little evidence about the usefulness of particular qualitative approaches in reflecting the perspectives and experiences of autistic participants. This short report serves to introduce interpretative phenomenological analysis as one among a range of qualitative approaches to autism research. We argue that certain features of interpretative phenomenological analysis, including its commitment to an equality of voice and researcher reflexivity, may help to illuminate the experiences of autistic individuals. The procedures of interpretative phenomenological analysis are presented through the lens of 10 studies into autistic people’s experiences, and a case is made for the suitability of this approach within qualitative autism research.
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7. Jia R, Steelman ZR, Jia HH. {{Psychometric Assessments of Three Self-Report Autism Scales (AQ, RBQ-2A, and SQ) for General Adult Populations}}. {J Autism Dev Disord}. 2019.
This study assesses the psychometric properties of three self-report measures of autistic-like tendencies in the general adult population: autistic spectrum quotient (AQ), adult repetitive behaviours questionnaire-2 (RBQ-2A), and systemizing quotient (SQ). Three rounds of development and testing using different U.S. and global samples led to three instruments that are psychometrically sound, parsimonious, and generalizable across populations. The resulting AQ-9, consisting of two factors: social communication and attention to detail, now mirrors the current dual diagnostic criteria in the DSM-5. The RBQ-2A-R has now been refined through CFA for the first time. The new SQ-7 scale also has updated content. All three refined scales demonstrate satisfactory psychometric validity and parsimony and now provide evidence of their appropriateness for empirical research.
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8. Jordan AK, Thomeer ML, Lopata C, Donnelly JP, Rodgers JD, McDonald CA. {{Informant Discrepancies in the Assessment of Adaptive Behavior of Children with Autism Spectrum Disorder}}. {J Autism Dev Disord}. 2019.
This study examined informant discrepancies for parent and teacher adaptive behavior ratings of 103 children, ages 6-12 years, with ASD (without intellectual disability). Scores on the Adaptive Behavior Assessment System, third edition (Harrison and Oakland, Western Psychological Services, Los Angeles, 2015) General Adaptive Composite (GAC) and practical, social, and conceptual domains were examined for mean differences, level of agreement, and moderators of difference scores between informant groups. Teacher scores were significantly higher (indicating better functioning) than parents for the GAC and practical domain. Parent and teacher scores were moderately correlated and Bland-Altman plots and regression analyses revealed no systematic differences in parent-teacher agreement across the range of scores. None of the tested variables moderated the parent-teacher difference scores. Implications for clinical practice are discussed.
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9. McIntosh CE, Kandiah J, Boucher NR. {{Practical Considerations for School Nurses in Improving the Nutrition of Children With Autism Spectrum Disorder}}. {NASN school nurse (Print)}. 2019: 1942602×18822775.
Children with autism spectrum disorder may exhibit issues with food selectivity and/or picky eating habits. Symptoms of autism such as sensory sensitivity contribute to why these children refuse to eat food, but medications, food intolerance, and even financial status can cause this issue to become concerning to a student’s overall health. School nurses are imperative in the health care of children with autism spectrum disorder and must understand why food selectivity occurs in order to maintain or improve the nutrition status of their students. This article provides an overview of food selectivity and where it stems from as well as 10 tips in working with food selective children.
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10. O’Neill SJ, Smyth S, Smeaton A, O’Connor NE. {{Assistive technology: Understanding the needs and experiences of individuals with autism spectrum disorder and/or intellectual disability in Ireland and the UK}}. {Assistive technology : the official journal of RESNA}. 2019: 1-9.
Assistive technologies (ATs) aimed at improving the life quality of persons with Autism Spectrum Disorder and/or Intellectual Disability (ASD/ID) is an important research area. Few have examined how this population use and experience AT or their vision for future uses of AT. The present study aimed to update and extend previous research and provides insight from caregivers, and other stakeholders (n = 96), living in Ireland and the United Kingdom, on their experiences of assistive technology (AT) for ASD/ID. Caregiver and professional responses to an anonymous online survey showed that focus individuals were rated low in terms of independent and self-management skills, with scheduling and planning and communication identified as desirable future AT functions. Overall, positive experiences of AT were reported, with AT use more than doubling in recent years.
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11. Panerai S, Suraniti GS, Catania V, Zingale M, Ferri R, Raggi A, Trubia G, Elia M. {{Early results from a combined low-intensive psychoeducational intervention for preschoolers with autism spectrum disorder}}. {Disabil Rehabil}. 2019: 1-9.
PURPOSE: Early and Intensive Behavioral Treatments are considered to be evidence-based interventions for children with Autism Spectrum Disorder (ASD). Nevertheless, children with ASD might not always have the opportunity to benefit from intensive treatment; new, more accessible and alternative treatment options need to be tested. The aim of this study was to evaluate the effectiveness of the Combined Low-intensive Psychoeducational Intervention (CLI-PEI) delivered to preschoolers with ASD at the end of the pre-primary school day. METHODS: A quasi-experimental design study, namely a pretest-posttest alternative-treatment comparison groups design, was used. Treatment sessions were carried out over a period of 12 months. Forty-three individuals with autism were included in the study: 24 received the CLI-PEI and 19 were administered the Treatment As Usual. A pre- and posttreatment assessment was carried out using the Psychoeducational Profile-Third edition and the Vineland Adaptive Behavior Scale. RESULTS: The children who received the CLI-PEI showed better gains in both developmental and maladaptive behaviors; furthermore, increased skills were found in all adaptive domains. CONCLUSIONS: The CLI-PEI might seems to be a viable treatment option for children with ASD, when intensive behavioral treatments are not accessible. Implication for rehabilitation Children with ASD might not always have the opportunity to benefit from intensive treatment. The identification of more accessible, less intensive and less expensive evidence-based psychoeducational interventions might represent an appealing challenge for rehabilitation therapists. Less intensive and less expensive evidence-based interventions might also represent a viable option for children and their families, especially in communities with limited resources for autism. A pragmatic approach including components from evidence-based treatments might guarantee flexibility and the possibility to implement an intervention well-tailored to the specific child needs. CLI-PEI for preschoolers with ASD seems to be a promising pragmatic approach, promoting improvements in developmental, adaptive and maladaptive domains.
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12. Scheidemantel T, Braun-Gabelman A, Stefanac K, Ruedrich S, Kotz M. {{Playing with a Stacked Deck: Literature Review and Case Series of Problem Gambling in Adults with Intellectual and Developmental Disabilities}}. {Journal of gambling studies}. 2019.
Problem gambling (PG) is associated with significant personal and societal loss. These losses may be exacerbated when a person with intellectual and developmental disabilities (IDD), who may not fully appreciate the inherent risks, engages in such behavior. Literature on this particular population is scarce, leaving the scientific community and treatment providers at a loss as to best practices. The present paper reviews three cases that illustrate common challenges faced by people with IDD and PG. Suggestions for effective prevention and treatment efforts are offered. Future directions include development of measures and instruments, with the eventual goal of effective prevention and treatment for this unique population.
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13. Simpson K, Adams D, Alston-Knox C, Heussler HS, Keen D. {{Exploring the Sensory Profiles of Children on the Autism Spectrum Using the Short Sensory Profile-2 (SSP-2)}}. {J Autism Dev Disord}. 2019.
The aim of this study was to identify sensory subtypes in children on the autism spectrum using the Short Sensory Profile-2 (SSP-2). Caregivers of children on the autism spectrum aged 4-11 years (n = 271) completed the SSP-2. Analysis using Dirichlet process mixture model identified a two-cluster model which provided the best solution to subtype sensory responses. Two distinct subtypes were identified: Uniformly elevated (67%) with high scores across all quadrants and Raised avoiding and sensitivity (33%) with raised scores in the avoiding and sensitivity quadrants. There were no differences between subtypes based on chronological age and autism characteristics measured using the social communication questionnaire (total score). Based on the SSP-2, children were reported to experience differences in responses to sensory input, in particular in the area of sensitivity and avoiding.
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14. Wang Z, Khemani P, Schmitt LM, Lui S, Mosconi MW. {{Static and dynamic postural control deficits in aging fragile X mental retardation 1 (FMR1) gene premutation carriers}}. {J Neurodev Disord}. 2019; 11(1): 2.
BACKGROUND: Individuals with premutation alleles of the fragile X mental retardation 1 (FMR1) gene are at risk of developing fragile X-associated tremor/ataxia syndrome (FXTAS) during aging. Characterization of motor issues associated with aging in FMR1 premutation carriers is needed to determine neurodegenerative processes and establish new biobehavioral indicators to help identify individuals at greatest risk of developing FXTAS. METHODS: We examined postural stability in 18 premutation carriers ages 46-77 years and 14 age-matched healthy controls. Participants completed a test of static stance and two tests of dynamic postural sway on a force platform to quantify postural variability and complexity. CGG repeat length was measured for each premutation carrier, and MRI and neurological evaluations were conducted to identify carriers who currently met criteria for FXTAS. Of the 18 premutation carriers, seven met criteria for definite/probable FXTAS (FXTAS+), seven showed no MRI or neurological signs of FXTAS (FXTAS-), and four were inconclusive due to insufficient data. RESULTS: Compared to controls, premutation carriers showed increased center of pressure (COP) variability in the mediolateral (COPML) direction during static stance and reduced COP variability in the anterior-posterior (COPAP) direction during dynamic AP sway. They also showed reductions in COPML complexity during each postural condition. FXTAS+ individuals showed reduced COPAP variability compared to FXTAS- carriers and healthy controls during dynamic AP sway. Across all carriers, increased sway variability during static stance and decreased sway variability in target directions during dynamic sways were associated with greater CGG repeat length and more severe neurologically rated posture and gait abnormalities. CONCLUSION: Our findings indicate that aging FMR1 premutation carriers show static and dynamic postural control deficits relative to healthy controls implicating degenerative processes of spinocerebellar and cerebellar-brainstem circuits that may be independent of or precede the onset of FXTAS. Our finding that FXTAS+ and FXTAS- premutation carriers differed on their level of intentional AP sway suggests that neural mechanisms of dynamic postural control may be differentially impacted in patients with FXTAS, and its measurement may be useful for rapidly and precisely identifying disease presence and onset.
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15. Weber JD, Smith E, Berry-Kravis E, Cadavid D, Hessl D, Erickson C. {{Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities}}. {Brain Sci}. 2019; 9(2).
To date, there has been limited research on the primary concerns and treatment priorities for individuals with fragile X syndrome (FXS) and their families. The National Fragile X Foundation in collaboration with clinical investigators from industry and academia constructed a survey to investigate the main symptoms, daily living challenges, family impact, and treatment priorities for individuals with FXS and their families, which was then distributed to a large mailing list. The survey included both structured questions focused on ranking difficulties as well as qualitative analysis of open-ended questions. It was completed by 467 participants, including 439 family members or caretakers (family members/caretakers) of someone with FXS, 20 professionals who work with a person with FXS, and 8 individuals with FXS. Respondents indicated three main general areas of concern: Anxiety, behavioral problems, and learning difficulties. Important differences were noted, based on the sex and age of the individual with FXS. The results highlight the top priorities for treatment development for family members/caretakers, as well as a small group of professionals, and an even smaller group of individuals with FXS, while demonstrating challenges with « voice of the patient » research in FXS.
