1. Coussens M, Van Driessen E, De Baets S, Van Regenmortel J, Desoete A, Oostra A, Vanderstraeten G, Waelvelde HV, Van de Velde D. {{Parent’s perspective on participation of young children with Attention Deficit Hyperactive Disorder and/or Developmental Coordination Disorder and/or Autism Spectrum Disorder: a systematic scoping review}}. {Child Care Health Dev};2019 (Dec 22)
BACKGROUND: During the early years of a child’s life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer-reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than six years with Attention Developmental Hyperactivity Disorder, Autism Spectrum Disorder and/or Developmental Coordination Disorder. METHODS: The scoping review followed Arksey and O’Malley’s framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child’s participation, written in English, published between 2001 – September 2017 were included. RESULTS: A total of 854 articles were retrieved with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child-Youth (ICF-CY) framework. Concepts contained in these studies were linked to’activities and participation’ (general tasks and demands such as bedtime and dinner routines and social, civic life such as play and leisure). Environment-focused factors identified were situated on ‘support and relationships’, ‘attitudes’, ‘services, systems and policies’. CONCLUSION: The review revealed guidelines focusing on family-centered care, communication with and providing information to parents with young children with Developmental Disabilities (ADHD, DCD and/or ASD).
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2. Lee S, Taylor JL, Redmond C, Hadd A, Kemppainen JA, Haynes BC, Shone S, Bailey DB, Jr., Latham GJ. {{Validation of Fragile X Screening in the Newborn Population Using a Fit-for-Purpose FMR1 PCR Assay System}}. {J Mol Diagn};2019 (Dec 19)
Newborn screening is designed for pre-symptomatic identification of serious conditions with effective early interventions. Clinical laboratories must perform prospective pilot studies to ensure that the analytical performance and workflow for a given screening test are appropriate. We assessed the potential to screen newborns for fragile X syndrome, a monogenic neurodevelopmental disorder, by establishing a customized, high-throughput PCR and analysis software system designed to detect fragile X mental retardation 1 gene repeat expansions from dried blood spots. Assay precision, accuracy, sensitivity, and specificity were characterized across the categorical range of repeat expansions. The assay consistently resolved genotypes within three CGG repeats of reference values up to at least 137 repeats and within six repeats for larger expansions up to 200 repeats. Accuracy testing results were concordant with reference results. Full and premutation alleles were detected from sub-nanogram DNA inputs eluted from dried blood spots and from mixtures with down to 1% relative abundance of the respective expansion. Analysis of 963 de-identified newborn dried blood spot samples identified 957 normal and six premutation specimens consistent with previously published prevalence estimates. These studies demonstrate that the assay system can support high-throughput newborn screening programs.
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3. Leedham AT, Thompson AR, Freeth M. {{A thematic synthesis of siblings’ lived experiences of autism: Distress, responsibilities, compassion and connection}}. {Res Dev Disabil};2019 (Dec 20);97:103547.
BACKGROUND: Despite increased understandings that the whole family system is influenced by a family member being diagnosed with an Autism Spectrum Condition (ASC), the experiences of siblings can be overlooked. However, recently understanding of siblings’ experiences has begun to develop via qualitative studies. AIMS: This review aimed to systematically identify, appraise and review the qualitative literature investigating the lived experience of siblings of autistic people. METHODS AND PROCEDURES: Six databases were systematically searched for studies reporting empirical qualitative data on the lived experience of neurotypical siblings of autistic people. Eighteen studies met inclusion criteria and were analysed using Thematic Synthesis. OUTCOMES AND RESULTS: Data synthesis revealed four superordinate themes; Roles and responsibilities, different to what may be expected typically; Impact of behaviours, particularly aggressive behaviours; Process of adjustment, including learning and developing empathy and acceptance; Interpersonal experiences with others and between siblings. CONCLUSIONS AND IMPLICATIONS: A narrative of love and empathy was present throughout. However, several participants also experienced significant difficulties affecting their mental health. Findings suggest a sense of agency, understanding ASC, time spent alone with parents, supportive environments and the chance to relate to other siblings as protective factors in facilitating positive psychological wellbeing for siblings of autistic people.
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4. Locke J, Kang-Yi C, Frederick L, Mandell DS. {{Individual and organizational characteristics predicting intervention use for children with autism in schools}}. {Autism};2019 (Dec 23):1362361319895923.
LAY ABSTRACT: Several interventions or treatment programs have been shown through research to improve social outcomes for children with autism, but they often are not used in schools. This study examined individual (school personnel) and organizational (school level) factors associated with the use of a research-informed social engagement intervention, Remaking Recess, for children with autism in elementary schools. A total of 28 school personnel from 12 schools in 5 districts in the northeastern United States participated. Schools were randomly assigned to (1) training in Remaking Recess only or (2) training in Remaking Recess with implementation support (tailored strategies to remove barriers to increase use of Remaking Recess). School personnel rated their attitudes about research-informed interventions, organizational readiness (school’s readiness to use a research-informed intervention), and fidelity or the degree to which an intervention is used as it was originally designed. Observers rated school personnel’s fidelity at baseline (pre-intervention training) and exit (post-intervention training). The results suggest that self-rated fidelity was lower when staff perceived the use of Remaking Recess was required; however, observer-rated fidelity was lower when staff rated Remaking Recess as appealing. In addition, self-rated fidelity was higher when there was a sufficient number of staff, positive individual growth, and organizational adaptability. The results also indicated higher observer-rated fidelity when staff perceived positive influence over their coworkers. The results suggest that both individual (attitudes) and organizational (influence, staffing, growth, adaptability) characteristics may affect implementation success in schools. A collaborative decision-making approach for evidence-based practice use is recommended.
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5. Martinez-Gonzalez AE, Piqueras JA. {{Standard scores of the Repetitive Behavior Scale-Revised for people with autism and intellectual disability in Spain}}. {Actas Esp Psiquiatr};2019 (Nov);47(6):209-217.
INTRODUCTION: Repetitive behavior is a transdiagnostic variable that is present in many neurodevelopmental disorders. The Repetitive Behavior Scale-Revised (RBS-R) by Bodfish is one of the tests most used to evaluate repetitive behaviors in people with autism and intellectual disability. MATERIALS AND METHODS: In the present article, we analyze the differences in repetitive behavior according to the diagnosis, the interaction effects between diagnoses and gender and/or age and display the standard scores of the RBS-R for a group of people with autism, a group of people with intellectual disability and another group of people with Autism and intellectual disability. RESULTS: The results indicate that there are differences in the repetitive behavior between the groups, being greater the severity of the repetitive behaviors in people with autism associated to intellectual disability, followed by autism, and finally intellectual disability. Finally, the RBS-R percentiles according to diagnostic groups are shown. CONCLUSIONS: The RBS-R has been shown to be a useful diagnostic tool for assessing some of the main neurodevelopmental disorders, such as autism spectrum disorders and intellectual disability.
6. Serati M, Delvecchio G, Orsenigo G, Mario Mandolini G, Lazzaretti M, Scola E, Triulzi F, Brambilla P. {{Corrigendum to « The Role of the Subplate in Schizophrenia and Autism: A Systematic Review » [Neuroscience 408C (2019) 58-67]}}. {Neuroscience};2019 (Dec 19)
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7. Tunc B, Yankowitz LD, Parker D, Alappatt JA, Pandey J, Schultz RT, Verma R. {{Deviation from normative brain development is associated with symptom severity in autism spectrum disorder}}. {Mol Autism};2019;10:46.
Background: Autism spectrum disorder (ASD) is a heterogeneous neurodevelopmental condition. The degree to which the brain development in ASD deviates from typical brain development, and how this deviation relates to observed behavioral outcomes at the individual level are not well-studied. We hypothesize that the degree of deviation from typical brain development of an individual with ASD would relate to observed symptom severity. Methods: The developmental changes in anatomical (cortical thickness, surface area, and volume) and diffusion metrics (fractional anisotropy and apparent diffusion coefficient) were compared between a sample of ASD (n = 247) and typically developing children (TDC) (n = 220) aged 6-25. Machine learning was used to predict age (brain age) from these metrics in the TDC sample, to define a normative model of brain development. This model was then used to compute brain age in the ASD sample. The difference between chronological age and brain age was considered a developmental deviation index (DDI), which was then correlated with ASD symptom severity. Results: Machine learning model trained on all five metrics accurately predicted age in the TDC (r = 0.88) and the ASD (r = 0.85) samples, with dominant contributions to the model from the diffusion metrics. Within the ASD group, the DDI derived from fractional anisotropy was correlated with ASD symptom severity (r = – 0.2), such that individuals with the most advanced brain age showing the lowest severity, and individuals with the most delayed brain age showing the highest severity. Limitations: This work investigated only linear relationships between five specific brain metrics and only one measure of ASD symptom severity in a limited age range. Reported effect sizes are moderate. Further work is needed to investigate developmental differences in other age ranges, other aspects of behavior, other neurobiological measures, and in an independent sample before results can be clinically applicable. Conclusions: Findings demonstrate that the degree of deviation from typical brain development relates to ASD symptom severity, partially accounting for the observed heterogeneity in ASD. Our approach enables characterization of each individual with reference to normative brain development and identification of distinct developmental subtypes, facilitating a better understanding of developmental heterogeneity in ASD.
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8. van Kessel R, Walsh S, Ruigrok ANV, Holt R, Yliherva A, Karna E, Moilanen I, Hjorne E, Johansson ST, Schendel D, Pedersen L, Jorgensen M, Brayne C, Baron-Cohen S, Roman-Urrestarazu A. {{Autism and the right to education in the EU: policy mapping and scoping review of Nordic countries Denmark, Finland, and Sweden}}. {Mol Autism};2019;10:44.
Introduction: The universal right to education for people with disabilities has been highlighted by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies addressing the right to education and special education needs of autistic children in Denmark, Sweden, and Finland. Methods: A policy path analysis was carried out using a scoping review as an underlying framework for data gathering. Policy mapping was performed independently by both lead authors to increase reliability. Results and discussion: The values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities have been closely translated into the respective education systems of the countries under study, offering special education needs services and support in mainstream education with the aim of including as many children into mainstream education as possible. Even though the education systems are comparable, the approaches between the countries under study are slightly different. Denmark and Sweden have passed several policies specifically geared towards special education needs, while Finland incorporates this more in general education policy. Conclusion: All countries under study have incorporated the values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities in their respective education systems while emphasising the need to include as many children in the mainstream system as possible.
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9. Wiggins LD, Durkin M, Esler A, Lee LC, Zahorodny W, Rice C, Yeargin-Allsopp M, Dowling NF, Hall-Lande J, Morrier MJ, Christensen D, Shenouda J, Baio J. {{Disparities in Documented Diagnoses of Autism Spectrum Disorder Based on Demographic, Individual, and Service Factors}}. {Autism Res};2019 (Dec 23)
The objectives of our study were to (a) report how many children met an autism spectrum disorder (ASD) surveillance definition but had no clinical diagnosis of ASD in health or education records and (b) evaluate differences in demographic, individual, and service factors between children with and without a documented ASD diagnosis. ASD surveillance was conducted in selected areas of Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. Children were defined as having ASD if sufficient social and behavioral deficits and/or an ASD diagnosis were noted in health and/or education records. Among 4,498 children, 1,135 (25%) had ASD indicators without having an ASD diagnosis. Of those 1,135 children without a documented ASD diagnosis, 628 (55%) were not known to receive ASD services in public school. Factors associated with not having a clinical diagnosis of ASD were non-White race, no intellectual disability, older age at first developmental concern, older age at first developmental evaluation, special education eligibility other than ASD, and need for fewer supports. These results highlight the importance of reducing disparities in the diagnosis of children with ASD characteristics so that appropriate interventions can be promoted across communities. Autism Res 2019, 00: 1-10. (c) 2019 International Society for Autism Research,Wiley Periodicals, Inc. LAY SUMMARY: Children who did not have a clinical diagnosis of autism spectrum disorder (ASD) documented in health or education records were more likely to be non-White and have fewer developmental problems than children with a clinical diagnosis of ASD. They were brought to the attention of healthcare providers at older ages and needed fewer supports than children with a clinical diagnosis of ASD. All children with ASD symptoms who meet diagnostic criteria should be given a clinical diagnosis so they can receive treatment specific to their needs.
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10. Zhou N, Wong HM, McGrath C. {{Efficacy of Social Story Intervention in Training Toothbrushing Skills Among Special-Care Children With and Without Autism}}. {Autism Res};2019 (Dec 23)
Toothbrushing is a routine practice for oral hygiene maintenance. It is also a challenging task for young children with special care needs. In this study, social stories were employed to teach toothbrushing skills for preschool children with special needs. Those children were recruited from the Special Child Care Centers, including 87 children with autism and 94 children without autism. A validated toothbrushing social story was used to demonstrate the toothbrushing procedure for all the recruited children. Parents were encouraged to show the stories to their children before or during their daily toothbrushing. Children’s toothbrushing performance, oral hygiene status, and gingival health status were assessed at baseline and 6 months. Toothbrushing performance, oral hygiene, and gingival status of the recruited children were significantly improved after using social stories. Moreover, children with autism showed better oral hygiene status (P = 0.01) and better gingival status (P < 0.001) than their peers without autism. However, there were no significant differences in the toothbrushing performance among children with and without autism. The regression models indicated that the improvement of children's toothbrushing performance and oral health status were associated with children's intellectual functioning and parents' attitudes toward the usefulness of social story intervention. The principal findings suggested that social story intervention could be used to improve toothbrushing skills among children with or without autism, while it was more efficient in improving the oral hygiene status among children with autism. Autism Res 2019, 00: 1-9. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Toothbrushing is considered as a basic self-care practice that should be advocated in early childhood. We used social stories to train toothbrushing skills among preschoolers with special care needs. The toothbrushing skills of the recruited children were significantly improved after 6-months intervention, and children with autism showed better oral hygiene status than their peers without autism. These findings suggested that social story-based health promotion could be implemented among children with special needs. Lien vers le texte intégral (Open Access ou abonnement)
