1. Clark LA, Whitt S, Lyons K. {{Improving Communication Between Health Care Providers, Families, and Children with Autism Spectrum Disorder: The Linked Program}}. {Journal of perianesthesia nursing : official journal of the American Society of PeriAnesthesia Nurses}. 2019.
PURPOSE: To provide easy-to-use tools and skills to decrease stress in the perioperative period for families and their children with autism spectrum disorder (ASD). DESIGN: Evidence-based practice project. METHODS: After literature review, a perioperative assessment and management program was developed to guide and individualize the care of pediatric patients with ASD. The program was piloted on a convenience sample of 31 pediatric patients diagnosed with ASD. FINDINGS: Most patients were back to their baseline behavior according to their families or caregivers within 120 minutes of the procedure (n = 29, 93.5%), with two needing more than 24 hours (6.5%). CONCLUSIONS: The Linked Program has enabled staff to be effective in meeting the perioperative needs of families and their children with ASD. Families have expressed great appreciation that they are able to share their knowledge of what their children need.
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2. Lee JY, Yun J. {{What Else Is Needed in the Korean Government’s Master Plan for People With Developmental Disabilities?}}. {Journal of preventive medicine and public health = Yebang Uihakhoe chi}. 2019; 52(3): 200-4.
On September 12, 2018, President Jae-In Moon announced the Comprehensive Plan for Lifelong Care for People with Developmental Disabilities, with representatives from the associated government branches (Ministry of Health and Welfare, Ministry of Education, and Ministry of Employment and Labor) in attendance. The goals of this plan are to provide health, medical, rehabilitative, special education, and social welfare services according to the life-stages of the affected individuals; to reduce parental pressure; to promote social interventions; and to enhance community-level participation in order to create a ‘welfare society in harmony.’ However, in order for the plan to succeed, additional efforts must be made in the following areas. First, an epidemiological survey is needed to understand the scale, prevalence, and incidence of developmental disabilities and to establish an evidence base to support policy development. Second, accurate definitions of developmental disabilities must be established in order to avoid policy discrimination based on impairment type and age. Third, personal evaluations to assess disabled individuals’ unmet needs and customized service designs to deliver those needs are required. Fourth, the plan must fulfill the goals of accessibility and fairness that the government intends to provide. Fifth, the government should consider an integrated financial support system and to propose a detailed plan for monetary distributions. Finally, an integrated system that links health, medical, employment, educational, and welfare services must be constructed.
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3. Li HJ, Chen CY, Tsai CH, Kuo CC, Chen KH, Chen KH, Li YC. {{Utilization and medical costs of outpatient rehabilitation among children with autism spectrum conditions in Taiwan}}. {BMC health services research}. 2019; 19(1): 354.
BACKGROUND: We examined the utilization of rehabilitation resources among children with autism spectrum condition (ASC), a neurodevelopmental condition, in Taiwan. METHODS: We derived from the National Health Insurance Research Database of Taiwan data pertaining to 3- to 12-year-old children for the period 2008-2010. Based on diagnoses executed in accordance with the International Classification of Diseases, Ninth Revision, Clinical Modification, we classified these data into the ASC and non-ASC groups and analyzed them through multiple linear regression model, negative binomial model, independent sample t testing, and chi(2) testing. RESULTS: Compared with the non-ASC group, the ASC group exhibited higher utilization of rehabilitation resources. Because hospitals are constrained by overall expenditure limits, expenditure on rehabilitation resources has plateaued, preventing any increase in the utilization of rehabilitation resources. In our ASC group, preschool-aged children significantly outnumbered (p < 0.001) school-aged children. When stratified by the hospital level, district hospitals reported the highest utilization (p < 0.001). When stratified by region, the highest utilization was in Taipei, whereas the lowest was in the East region (p < 0.001). The total annual cost, average frequency of visits, utilization of rehabilitation resources, and average cost were all affected by such elements as patient demographics, hospital type and location (p < 0.001). CONCLUSIONS: For improving treatment outcomes among children with ASC and decreasing treatment expenditure, policies that promote the timely ASC detection and treatment should be implemented. Lien vers le texte intégral (Open Access ou abonnement)
4. Li Q, Becker B, Jiang X, Zhao Z, Zhang Q, Yao S, Kendrick KM. {{Decreased interhemispheric functional connectivity rather than corpus callosum volume as a potential biomarker for autism spectrum disorder}}. {Cortex}. 2019; 119: 258-66.
Previous studies have implicated both structural and interhemispheric functional connectivity alterations in autism spectrum disorder (ASD) although findings are inconsistent. There is evidence that connectivity between corresponding regions in each hemisphere (homotopic) may be of particular importance and therefore the present study used the Autism Brain Imaging Data Exchange data to investigate ASD-related resting-state and structural alterations as well as associations with symptom severity (Autism Diagnostic Observation Schedule – ADOS). We employed a voxel-mirrored homotopic connectivity analysis to compare interhemispheric functional connectivity in 409 ASD and 455 typically developing subjects. Additionally, voxel-based morphology was used to investigate volumetric differences in the corpus callosum, the major commissure for interhemispheric communication. ASD subjects demonstrated significant reductions in interhemispheric functional connections between regions in the default mode network (medial prefrontal, posterior cingulate and precuneus), salience network (anterior cingulate and insula), mirror neuron/motor systems (inferior frontal gyrus, inferior parietal lobule, precentral gyrus, supplementary motor area), thalamus and auditory (superior temporal gyrus) and visual systems (lingual, fusiform and inferior occipital gyri). A support vector machine analysis based on interhemispheric connectivity (but not all homotopic) revealed an average classification accuracy of 88.70% for distinguishing ASD from controls across different sites. In ASD subjects symptom severity as measured by ADOS was negatively associated with posterior cingulate, insula and superior temporal gyrus homotopic functional connectivity. While ASD subjects displayed reduced anterior and posterior callosal volumes they were not associated with either ADOS scores or functional connectivity changes. Our findings suggest that reduced interhemispheric connectivity involving homotopic regions may be a potential biomarker for ASD with bilateral posterior cingulate, insula and superior temporal gyrus connections being associated with symptom severity.
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5. Marsden REF, Francis J, Garner I. {{Use of GFCF Diets in Children with ASD. An Investigation into Parents’ Beliefs Using the Theory of Planned Behaviour}}. {J Autism Dev Disord}. 2019.
Gluten free/Casein free (GFCF) diets are one of the most common types of Complementary and Alternative Medicines (CAM) used in Autism Spectrum Disorders (ASD) despite little evidence to support positive effects. There has been no theory driven literature that has investigated parent’s reasons for their use. The Theory of Planned Behaviour (TPB) was used to examine parent’s intentions to use GFCF diets for their child with an ASD. Treatment and causal beliefs were also examined. Parents (n = 33, children aged 3-17 years) were influenced by anticipated regret, positive outcomes and attitude. Future interventions should provide information to parents and health professionals about the possible causes of ASD and therapy options which are in line with current recommendations.
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6. Moavero R, Benvenuto A, Emberti Gialloreti L, Siracusano M, Kotulska K, Weschke B, Riney K, Jansen FE, Feucht M, Krsek P, Nabbout R, Jansen AC, Wojdan K, Borkowska J, Sadowski K, Hertzberg C, Hulshof H, Samueli S, Benova B, Aronica E, Kwiatkowski DJ, Lagae L, Jozwiak S, Curatolo P. {{Early Clinical Predictors of Autism Spectrum Disorder in Infants with Tuberous Sclerosis Complex: Results from the EPISTOP Study}}. {J Clin Med}. 2019; 8(6).
Autism spectrum disorder (ASD) is highly prevalent in subjects with Tuberous Sclerosis Complex (TSC), but we are not still able to reliably predict which infants will develop ASD. This study aimed to identify the early clinical markers of ASD and/or developmental delay (DD) in infants with an early diagnosis of TSC. We prospectively evaluated 82 infants with TSC (6-24 months of age), using a detailed neuropsychological assessment (Bayley Scales of Infant Development-BSID, and Autism Diagnostic Observation Schedule-ADOS), in the context of the EPISTOP (Long-term, prospective study evaluating clinical and molecular biomarkers of EPIleptogenesiS in a genetic model of epilepsy-Tuberous SclerOsis ComPlex) project (NCT02098759). Normal cognitive developmental quotient at 12 months excluded subsequent ASD (negative predictive value 100%). The total score of ADOS at 12 months clearly differentiated children with a future diagnosis of ASD from children without (p = 0.012). Atypical socio-communication behaviors (p < 0.001) were more frequently observed than stereotyped/repetitive behaviors in children with ASD at 24 months. The combined use of BSID and ADOS can reliably identify infants with TSC with a higher risk for ASD at age 6-12 months, allowing for clinicians to target the earliest symptoms of abnormal neurodevelopment with tailored intervention strategies. Lien vers le texte intégral (Open Access ou abonnement)
7. Palmer M, San Jose Caceres A, Tarver J, Howlin P, Slonims V, Pellicano E, Charman T. {{Feasibility study of the National Autistic Society EarlyBird parent support programme}}. {Autism}. 2019: 1362361319851422.
The EarlyBird programme is a group-based psychoeducation intervention for parents of young children with autism. Although it is widely used in the United Kingdom, the evidence base for the programme is very limited. Using a mixed method, non-randomised research design, we aimed to test (1) the acceptability of the research procedures (recruitment, retention, suitability of measures), (2) the parental acceptability of EarlyBird (attendance, views of the programme, perceived changes) and (3) the facilitator acceptability of EarlyBird (fidelity, views of the programme, perceived changes). Seventeen families with a 2- to 5-year-old autistic child and 10 EarlyBird facilitators took part. Pre- and post-intervention assessment included measures of the child’s autism characteristics, cognitive ability, adaptive behaviour, emotional and behavioural problems and parent-reported autism knowledge, parenting competence, stress and wellbeing. Semi-structured interviews were completed at post-intervention with parents and facilitators. For those involved in the study, the research procedures were generally acceptable, retention rates were high and the research protocol was administered as planned. Generally, positive views of the intervention were expressed by parents and facilitators. Although the uncontrolled, within-participant design does not allow us to test for efficacy, change in several outcome measures from pre- to post-intervention was in the expected direction. Difficulties were encountered with recruitment (opt-in to the groups was ~56% and opt-in to the research was 63%), and strategies to enhance recruitment need to be built into any future trial. These findings should be used to inform protocols for pragmatic, controlled trials of EarlyBird and other group-based interventions for parents with young autistic children.
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8. Roberts J, Crawford H, Hogan AL, Fairchild A, Tonnsen B, Brewe A, O’Connor S, Roberts DA, Abbeduto L. {{Social Avoidance Emerges in Infancy and Persists into Adulthood in Fragile X Syndrome}}. {J Autism Dev Disord}. 2019.
Fragile X syndrome (FXS) is characterized by both social approach and social avoidance. However, the age of emergence and developmental trajectory of social avoidance has not been examined. This study investigates the longitudinal developmental trajectory and dynamic nature of social avoidance in males with FXS from infancy through young adulthood (n = 191). Multiple facets of social avoidance were collected using the Social Avoidance Scale (Roberts et al. 2007, 2009). Overall, 81% of males with FXS displayed social avoidance, which emerged during infancy, increased in severity across childhood, and stabilized through adolescence and early adulthood. An exaggerated « warm up » effect was also observed in FXS. This study delineates the complex profile of social avoidance, a common and impairing behavioral feature of FXS.
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9. Sasayama D, Kurahashi K, Oda K, Yasaki T, Yamada Y, Sugiyama N, Inaba Y, Harada Y, Washizuka S, Honda H. {{Negative Correlation between Serum Cytokine Levels and Cognitive Abilities in Children with Autism Spectrum Disorder}}. {Journal of Intelligence}. 2017; 5(2).
Evidence suggests that cytokines may be one of the major factors influencing cognitive development in those with autism spectrum disorder (ASD). To shed light on the neural and cognitive mechanisms of ASD, we investigated the association between peripheral cytokine levels and cognitive profiles in children with ASD. The serum levels of 10 cytokines (granulocyte macrophage colony-stimulating factor, interferon (IFN)-gamma, interleukin (IL)-1beta, IL-2, IL-4, IL-5, IL-6, IL-8, IL-10, and tumor necrosis factor-alpha) were examined in 14 children with ASD using the Human Ultrasensitive Cytokine Magnetic 10-Plex Panel for the Luminex platform. The Wechsler Intelligence Scale for Children (WISC) was administered to each subject, and the relationships between WISC scores and serum levels of the cytokines were examined. The full-scale intelligence quotient (IQ) was significantly negatively correlated with the levels of IL-6 (Spearman’s rank, p < 0.0001, false discovery rate q < 0.01). The levels of IL-6 and IFN-gamma showed significant negative correlations with the verbal comprehension index (p < 0.001, q < 0.01) and working memory index (p < 0.01, q < 0.05), respectively. No other cytokines were significantly correlated with full-scale IQ or with any of the subscale scores of the WISC. The present results suggest negative correlations of IL-6 and IFN-gamma levels with cognitive development of children with ASD. Our preliminary findings add to the evidence that cytokines may play a role in the neural development in ASD. Lien vers le texte intégral (Open Access ou abonnement)
10. Schiltz HK, Magnus BE, McVey AJ, Haendel AD, Dolan BK, Stanley RE, Willar KA, Pleiss SJ, Carson AM, Carlson M, Murphy C, Vogt EM, Yund BD, Van Hecke AV. {{A Psychometric Analysis of the Social Anxiety Scale for Adolescents Among Youth With Autism Spectrum Disorder: Caregiver-Adolescent Agreement, Factor Structure, and Validity}}. {Assessment}. 2019: 1073191119851563.
Social anxiety is common among adolescents with autism spectrum disorder (ASD). An ongoing challenge for both research and clinical practice in ASD is the assessment of anxious symptomatology. Despite its widespread use in samples of youth with ASD, the Social Anxiety Scale for Adolescents (SAS-A) has not received psychometric evaluation within this population; thus, the validity of its use in research and clinical practice for ASD remains unclear. The present study conducted a psychometric analysis of caregiver and adolescent SAS-A forms in a sample of adolescents with ASD ( N = 197). Results revealed (1) poor caregiver-adolescent item-level agreement, (2) a two-factor structure, (3) lack of measurement invariance between reporters, and (4) modest evidence for convergent and discriminant validity. Overall, findings suggest that this measure demonstrates reasonable psychometric properties in an ASD sample. Lack of measurement invariance, however, calls for careful interpretation of research involving the SAS-A in ASD samples, particularly when the primary goal is to compare adolescent and caregiver reports. The implications of these findings for future research and clinical practice are discussed.
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11. Spath EMA, Jongsma KR. {{Autism, autonomy, and authenticity}}. {Medicine, health care, and philosophy}. 2019.
Autonomy of people on the autism-spectrum has only been very rarely conceptually explored. Autism spectrum is commonly considered a hetereogenous disorder, and typically described as a behaviorally-defined neurodevelopmental disorder associated with the presence of social-communication deficits and restricted and repetitive behaviors. Autism research mainly focuses on the behavior of autistic people and ways to teach them skills that are in line with social norms. Interventions such as therapies are being justified with the assumption that autists lack the capacity to be self-reflective and to be « author of their lives ». We question this assumption, as some empirical research shows that autists are aware of their strengths and are critical about social norms, we take this as a starting point to reconsider the beliefs about autistic people’s capacities. As a theoretical framework, we draw on Berlin’s idea of positive and negative liberty as he clearly distinguishes between one’s own developed preferences and the simple absence of interference. By drawing on the concept of positive liberty, we illustrate that a lot of autists are aware of their own needs, and usually do not deny their own needs, values and interests. This makes them less prone than non-autistic people to adapt their preferences to external influences, which might be seen as sticking to an authentic way of living. Our analysis shows that many autists are hindered to be(come) autonomous due to unjustified interference, unreflected assumptions about their self-determination, or by paternalistic actions. These observations contribute to a better understanding when help and interference are justified and a more differentiated understanding of autonomy of autistic people.
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12. Zhao S, Chen WJ, Dhar SU, Eble TN, Kwok OM, Chen LS. {{Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states}}. {Autism Res}. 2019.
Understanding parents’ educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents’ most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD.
