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1
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Solgi M, Calub C, Feryn A, Hoang A, Fombonne E, Matushak C, Bush A, Zuckerman KE. Predictors of Early Intervention Referral after a Positive Developmental Screen in Community Primary Care Clinics. Acad Pediatr 2025; 25:102591. [PMID: 39395610 DOI: 10.1016/j.acap.2024.10.003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/20/2024] [Revised: 10/01/2024] [Accepted: 10/05/2024] [Indexed: 10/14/2024]
Abstract
BACKGROUND Primary care physicians (PCPs) may rely upon factors other than screening test scores in making referral decisions to developmental services. This study investigated which patient, provider, and screening test factors predict a PCP's IDEA Part C Early Intervention (EI) referral after a positive screening test result. METHODS Child demographics, developmental screening test results and EI referral decisions were collected via medical record review of 2756 15-, 18-, 24- and 30-month well-child checks conducted at seven community primary care clinics in four Oregon counties, in 2020-2021. A provider survey collected PCP demographic and professional characteristics. We tested the association of receipt of EI referral with screening test (Ages & Stages-3 [ASQ-3] and Modified Checklist for Autism in Toddlers - Revised [MCHAT-R]) scores, provider demographic information, child demographic data (sex, language, race and ethnicity), using multivariable logistic regression. RESULTS Around 54% of children with positive MCHAT-R screens, and 42% of children with positive ASQ-3 screens received EI referrals. Multivariable analyses showed that MCHAT-R score, ASQ-3 Communication and Gross Motor scores were associated with referral after a positive screen. Child sex, race, ethnicity, and language, and provider demographics had no multivariable association with referral. Referral rates varied substantially by site and individual provider. CONCLUSIONS The majority of toddlers with positive developmental screens were not receiving EI referrals from their PCP during the COVID-19 pandemic. Screening test thresholds and clinical thresholds for EI referral differ substantially, and some portions of the ASQ-3 do not seem to impact provider referral decisions. These findings may help inform physician training on developmental screening in primary care, specifically during times of unprecedented health care challenges.
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Affiliation(s)
- Mohadeseh Solgi
- School of Medicine (M Solgi, A Hoang), Div. General Pediatrics, Oregon Health and Science University (OHSU), Portland, Ore.
| | - Catrina Calub
- Department of Psychiatry and Behavioral Sciences (C Calub), University of California, Davis, Sacramento, Calif
| | - Alicia Feryn
- Biostatistics and Design Program (A Feryn), OHSU, Portland, Ore
| | - Annie Hoang
- School of Medicine (M Solgi, A Hoang), Div. General Pediatrics, Oregon Health and Science University (OHSU), Portland, Ore
| | - Eric Fombonne
- Department of Psychiatry and Institute on Development and Disability (E Fombonne), OHSU, Portland, Ore
| | | | - Abby Bush
- Help Me Grow (A Bush), Providence Swindells Center, Portland, Ore
| | - Katharine E Zuckerman
- Div. General Pediatrics and Institute on Development and Disability (K Zuckerman), OHSU, Portland, Ore
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2
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Casale LM, Gentles SJ, McLaughlin J, Schneider M. Service access experiences of immigrant and refugee caregivers of autistic children in Canada: A scoping review. PLoS One 2023; 18:e0293656. [PMID: 37943852 PMCID: PMC10635503 DOI: 10.1371/journal.pone.0293656] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/20/2022] [Accepted: 10/18/2023] [Indexed: 11/12/2023] Open
Abstract
Primary caregivers are the main mediators of care for children with an autism diagnosis in Canada, and the navigation process to gain access to autism-related services is known to be a major burden. These challenges to service access are compounded for newcomers to Canada, which include immigrants and refugees. The purpose of this scoping review is to describe the available research on Canadian newcomer caregiver experiences navigating and accessing autism-related services. After a systematic search and screening process, 28 studies were included. Data were extracted regarding the populations, study aims, and themes reported. Included studies characterized barriers and facilitators to service access and navigation specific to immigrants, while limited information was available for refugees. Based on the existing literature, the authors provide recommendations for possible research approaches, populations to include, and themes to examine in future research to promote health equity in Canadian autism service access.
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Affiliation(s)
- Lina Marie Casale
- Department of Health Studies, Faculty of Human and Social Sciences, Laurier Autism Research Consortium, Wilfrid Laurier University, Brantford, ON, Canada
| | - Stephen J. Gentles
- Department of Health Studies, Faculty of Human and Social Sciences, Wilfrid Laurier University, Brantford, ON, Canada
| | - Janet McLaughlin
- Department of Health Studies, Faculty of Human and Social Sciences, Co-Director, Laurier Autism Research Consortium, Wilfrid Laurier University, Brantford, Ontario, Canada
| | - Margaret Schneider
- Department of Kinesiology and Physical Education, Faculty of Science, Co-Director, Laurier Autism Research Consortium, Wilfrid Laurier University, Waterloo, Ontario, Canada
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3
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McComas JJ, Kolb R, Girtler S. The Effect of Caregiver-Implemented Training on Augmentative Alternative Communication Use by Individuals with Rett Syndrome: Remote Coaching via Telehealth. Dev Neurorehabil 2023; 26:436-449. [PMID: 38183414 DOI: 10.1080/17518423.2023.2301617] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/28/2023] [Accepted: 12/28/2023] [Indexed: 01/08/2024]
Abstract
Limited published literature exists demonstrating functional relations between idiosyncratic responses or augmentative alternative communication (AAC) and social reinforcement for individuals with Rett syndrome. In this study, six females with Rett syndrome ages 2-25 demonstrated requesting for preferred items using both idiosyncratic responses (e.g, looking, reaching) and AAC (e.g. single response microswitches). Researchers connected remotely via telehealth to coach caregivers to implement all sessions in home environments. Researchers individualized response prompt delays during AAC sessions (request/mand training) based on each participants' latency to respond during baseline. Implications for practice and directions for future research are discussed.
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Affiliation(s)
| | - Rebecca Kolb
- The University of Minnesota, Minneapolis, MN, USA
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4
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Carrera P, Boshoff K, Wiles L, Phillips R, Gibbs D, Porter L. Understanding Parents' Experiences With Mainstream Schooling for Their Children With Autism Spectrum Disorder: A Meta-Analysis. Am J Occup Ther 2023; 77:7704205150. [PMID: 37498962 DOI: 10.5014/ajot.2023.050025] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 07/29/2023] Open
Abstract
IMPORTANCE Children with autism spectrum disorder (ASD) face school-related occupational challenges. Attending a mainstream school offers benefits for children's learning and their development of social skills; however, parents express frustration with ensuring their child's unique needs and preferences are met. OBJECTIVE To gain insight into parents' experiences with the mainstream preschool and primary educational system for their children with ASD. DATA SOURCES Eleven electronic databases were systematically searched, and processes were followed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. STUDY SELECTION AND DATA COLLECTION Study eligibility was determined through the use of selection criteria and paired independent reviewers. Critical appraisal was conducted using a qualitative research hierarchy and a modified version of the Critical Appraisal Skills Programme tool. Two reviewers synthesized the data into themes, following the Joanna Briggs Institute meta-aggregation process. Twenty-six qualitative studies, representing the voices of 397 parents, are presented in this review (spanning 2013-2021). Articles were set in Westernized and non-Westernized settings and represented culturally and linguistically diverse population groups. FINDINGS Parents of children with ASD reported a lack of awareness and understanding of their children's unique learning needs in the mainstream school system at all levels. CONCLUSIONS AND RELEVANCE This review has various occupational therapy practice implications for supporting school-age children with ASD, their parents, and school staff. These include adopting family-centered and ecological approaches, raising awareness, influencing policy, and facilitating collaboration. What This Article Adds: This review provides guidance for occupational therapists working in schools about their practice in working at the individual, targeted, and whole-school levels to address occupational barriers faced by children with ASD.
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Affiliation(s)
- Pamela Carrera
- Pamela Carrera, BOccThy (Hons), is Occupational Therapist, SA Health, Adelaide, South Australia, Australia;
| | - Kobie Boshoff
- Kobie Boshoff, PhD, is Senior Lecturer in Occupational Therapy, Occupational Therapy Program, Allied Health and Human Performance Unit, International Centre for Allied Health Evidence, University of South Australia, Adelaide, South Australia, Australia
| | - Louise Wiles
- Louise Wiles, BPhys (Hons), PhD, is Project Manager, EQUIPP Partnership, IIMPACT Group, Allied Health and Human Performance, University of South Australia, Adelaide, South Australia, Australia
| | - Rebecca Phillips
- Rebecca Phillips, BAppSci (OT) (Hons), PhD, is Clinical Lecturer, Australian National University Medical School, Australian National University, Canberra, Australian Capital Territory, Australia
| | - Deanna Gibbs
- Deanna Gibbs, BAppSc (OT), MOT, PhD, Grad Cert Res Meth, is Director of Clinical Research for Neonates and Children (Nursing & AHP), Barts Health NHS Trust, London, United Kingdom
| | - Lisa Porter
- Lisa Porter, BAppSc (OT), is Lecturer in Occupational Therapy, Occupational Therapy Program, Allied Health and Human Performance Unit, University of South Australia, Adelaide, South Australia, Australia
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5
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Jellinek E, Keller-Margulis M, Mire SS, Fan W. Pre-service Teachers' Perspectives on Transition to Kindergarten Practices for Autistic Children. EARLY CHILDHOOD EDUCATION JOURNAL 2022; 51:1-10. [PMID: 35789789 PMCID: PMC9244515 DOI: 10.1007/s10643-022-01367-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 05/20/2022] [Indexed: 06/15/2023]
Abstract
Autistic children present with unique challenges that may be associated with challenges during the kindergarten transition process. While teachers endorse transition to kindergarten practices as important, implementation of effective transition practices is inconsistent. One possible reason is limited training during pre-service education; however, research about this is scarce. This study examined pre-service teachers' knowledge of autism spectrum disorder (ASD) and transitions to kindergarten. Findings indicate a lack of knowledge regarding both autism and transition, as well as significant differences in knowledge of autism, wherein those seeking special education certification reported higher levels of knowledge. These results highlight training opportunities for preparing pre-service teachers to better serve young autistic children.
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Affiliation(s)
- Emily Jellinek
- Department of Psychological, Health, & Learning Sciences, University of Houston, Houston, TX USA
- College of Education, Department of Psychological, Health, and Learning Sciences, University of Houston, 3657 Cullen Blvd, 491 Farish Hall, Houston, TX 77204-5023 USA
| | - Milena Keller-Margulis
- Department of Psychological, Health, & Learning Sciences, University of Houston, Houston, TX USA
| | - Sarah S. Mire
- Department of Psychological, Health, & Learning Sciences, University of Houston, Houston, TX USA
| | - Weihua Fan
- Department of Psychological, Health, & Learning Sciences, University of Houston, Houston, TX USA
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6
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Georgiades S, Tait PA, McNicholas PD, Duku E, Zwaigenbaum L, Smith IM, Bennett T, Elsabbagh M, Kerns CM, Mirenda P, Ungar WJ, Vaillancourt T, Volden J, Waddell C, Zaidman-Zait A, Gentles S, Szatmari P. Trajectories of Symptom Severity in Children with Autism: Variability and Turning Points through the Transition to School. J Autism Dev Disord 2021; 52:392-401. [PMID: 33704613 PMCID: PMC8732828 DOI: 10.1007/s10803-021-04949-2] [Citation(s) in RCA: 26] [Impact Index Per Article: 6.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/22/2021] [Indexed: 11/27/2022]
Abstract
This study examined the trajectories of autistic symptom severity in an inception cohort of 187 children with ASD assessed across four time points from diagnosis to age 10. Trajectory groups were derived using multivariate cluster analysis. A two trajectory/cluster solution was selected. Change in trajectory slopes revealed a turning point marked by plateauing in symptom reduction during the period of transition to school (age 6) for one of the two trajectories. Trajectories were labelled: Continuously Improving (27%) and Improving then Plateauing (73% of sample). Children in the two trajectories differed in levels of symptom severity, language, cognitive, and adaptive functioning skills. Study findings can inform the development of more personalized services for children with ASD transitioning into the school system.
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Affiliation(s)
- Stelios Georgiades
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, 1280 Main St. W. - MIP Suite 201A, Hamilton, ON, L8S 4K1, Canada.
| | - Peter A Tait
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, 1280 Main St. W. - MIP Suite 201A, Hamilton, ON, L8S 4K1, Canada
| | - Paul D McNicholas
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, 1280 Main St. W. - MIP Suite 201A, Hamilton, ON, L8S 4K1, Canada
| | - Eric Duku
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, 1280 Main St. W. - MIP Suite 201A, Hamilton, ON, L8S 4K1, Canada
| | | | - Isabel M Smith
- IWK Health Centre, Dalhousie University, Halifax, Canada
| | - Teresa Bennett
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, 1280 Main St. W. - MIP Suite 201A, Hamilton, ON, L8S 4K1, Canada
| | | | | | - Pat Mirenda
- University of British Columbia, Vancouver, Canada
| | - Wendy J Ungar
- University of Toronto, The Hospital for Sick Children, Toronto, Canada
| | | | | | | | | | - Stephen Gentles
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, 1280 Main St. W. - MIP Suite 201A, Hamilton, ON, L8S 4K1, Canada
| | - Peter Szatmari
- Centre for Addition and Mental Health, Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, The Hospital for Sick Children, Toronto, Canada
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7
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Durbin A, Jung JKH, Chung H, Lin E, Balogh R, Lunsky Y. Health and service use of newcomers and other adults with intellectual and developmental disabilities: A population-based study. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES 2021; 34:789-804. [PMID: 33482687 DOI: 10.1111/jar.12856] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/26/2020] [Revised: 12/17/2020] [Accepted: 01/03/2021] [Indexed: 11/29/2022]
Abstract
BACKGROUND This study examines newcomers with intellectual and developmental disabilities compared to other adults with intellectual and developmental disabilities in Ontario, Canada. METHODS This population-based retrospective cohort study used linked health and social services administrative data to identify adults with intellectual and developmental disabilities as newcomers, or non-newcomers, and compared their health status and health service outcomes. RESULTS Among those with intellectual and developmental disabilities, compared to non-newcomers, newcomers generally had lower or similar rates of health issues, except for higher rates of psychosis. Newcomers also had slightly greater use of community-based health services, but less hospital use. CONCLUSION Trends among those with the intellectual and developmental disabilities were consistent with general population trends; newcomers had lower rates of many health issues and lower hospital use. It also underscores the value of understanding drivers of heterogeneity within newcomers, such as the circumstances of admission and settlement in their new country.
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Affiliation(s)
- Anna Durbin
- Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON, Canada.,Department of Psychiatry, University of Toronto, Toronto, ON, Canada.,ICES, Toronto, ON, Canada
| | - James K H Jung
- Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.,Adult Neurodevelopmental Services, Centre for Addiction and Mental Health, Toronto, ON, Canada
| | | | - Elizabeth Lin
- Provincial System Support Program, Centre for Addiction and Mental Health, Toronto, ON, Canada
| | - Robert Balogh
- Faculty of Health Sciences, University of Ontario Institute of Technology, Oshawa, ON, Canada
| | - Yona Lunsky
- Department of Psychiatry, University of Toronto, Toronto, ON, Canada.,ICES, Toronto, ON, Canada.,Adult Neurodevelopmental Services, Centre for Addiction and Mental Health, Toronto, ON, Canada
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8
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East Asian American Parents of Children with Autism: a Scoping Review. REVIEW JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS 2020. [DOI: 10.1007/s40489-020-00221-y] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/23/2022]
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9
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Chen N, Miller S, Milbourn B, Black MH, Fordyce K, Van Der Watt G, Alach T, Masi A, Frost G, Tucker M, Eapen V, Girdler S. "The big wide world of school": Supporting children on the autism spectrum to successfully transition to primary school: Perspectives from parents and early intervention professionals. Scand J Child Adolesc Psychiatr Psychol 2020; 8:91-100. [PMID: 33520781 PMCID: PMC7685497 DOI: 10.21307/sjcapp-2020-009] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022] Open
Abstract
Background: The transition to primary school is often a complex and uncertain time for autistic children and their families. Understanding how best to develop school readiness and support transition to primary school for autistic children is essential. School readiness and transition planning are influenced by a range of personal and contextual factors, and it is important to understand the perspectives of the various stakeholders involved in the transition process. Methods: A qualitative exploration employing focus groups and interviews was undertaken with early intervention (EI) staff (n = 45) and parents (n = 18) across Australia to understand their perspectives on school readiness and the transition to primary school. Results: Thematic analysis identified four emerging themes facilitating transition including: 1) building the child; 2) building the parents; 3) building the receiving school; and, 4) connecting the system. Conclusion: Findings highlight the need to consider school readiness and transition planning from a holistic perspective, ensuring clear, collaborative and ongoing communication between parents, teachers and EI staff, using a strength-based approach, and individualizing transition planning.
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Affiliation(s)
- Nigel Chen
- School of Occupational Therapy Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia.,Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,Curtin Autism Research Group, Curtin University, Perth, Western Australia, Australia
| | - Scott Miller
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,Autism Association of Western Australia, Perth, Western Australia, Australia.,Autism Specific Early Learning and Care Centre, Perth, Western Australia, Australia
| | - Ben Milbourn
- School of Occupational Therapy Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia.,Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,Curtin Autism Research Group, Curtin University, Perth, Western Australia, Australia
| | - Melissa H Black
- School of Occupational Therapy Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia.,Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,Curtin Autism Research Group, Curtin University, Perth, Western Australia, Australia
| | - Kathryn Fordyce
- St Giles Society North West Tasmania Autism Specific Early Learning and Care Centre, Burnie, Tasmania, Australia
| | - Gerdamari Van Der Watt
- Autism Association of Western Australia, Perth, Western Australia, Australia.,Autism Specific Early Learning and Care Centre, Perth, Western Australia, Australia
| | - Tasha Alach
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,Autism Association of Western Australia, Perth, Western Australia, Australia.,Autism Specific Early Learning and Care Centre, Perth, Western Australia, Australia
| | - Anne Masi
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,School of Psychiatry, University of New South Wales, Sydney, New South Wales, Australia
| | - Grace Frost
- Anglicare SA Daphne St Autism Specific Early Learning and Care Centre, Prospect South Australia, Australia
| | - Madonna Tucker
- AEIOU Foundation, Queensland Autism Specific Early Learning and Care Centre, Nathan, Queensland, Australia
| | - Valsamma Eapen
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,School of Psychiatry, University of New South Wales, Sydney, New South Wales, Australia.,Academic Unit of Child Psychiatry, South West Sydney (AUCS), ICAMHS, Mental Health Centre, Liverpool, New South Wales, Australia
| | - Sonya Girdler
- School of Occupational Therapy Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia.,Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia.,Curtin Autism Research Group, Curtin University, Perth, Western Australia, Australia
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10
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Barriers to and Facilitators of Successful Early School Transitions for Children with Autism Spectrum Disorders and Other Developmental Disabilities: A Systematic Review. J Autism Dev Disord 2020; 50:1866-1881. [PMID: 30806855 DOI: 10.1007/s10803-019-03938-w] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
Abstract
Early school transitions are exciting, yet challenging, experiences for children with special needs, such as autism spectrum disorder (ASD), and their families. Transition to school support practices can help facilitate this difficult process for key stakeholders. The purpose of this systematic review was to synthesize the literature on transition to kindergarten support practice use for children with ASD and other developmental disabilities. Qualitative and quantitative studies were analyzed using textual narrative synthesis, following the guidelines from the Centre for Reviews and Dissemination. Overall, 39 individual studies were included. Results highlighted particular parent, child, and support staff needs during the transition to school, while also emphasizing the importance of collaborative practices in facilitating successful school beginnings.
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11
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Zeleke WA, Hughes TL, Drozda N. Disparities in Diagnosis and Service Access for Minority Children with ASD in the United States. J Autism Dev Disord 2019; 49:4320-4331. [PMID: 31342443 DOI: 10.1007/s10803-019-04131-9] [Citation(s) in RCA: 23] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/22/2022]
Abstract
This study examined children with an autism spectrum disorder (ASD) using data from the 2011 Survey of Pathway to Diagnosis and Services national data set (n = 1715). When comparing white and minority families, results indicate there were no differences between the child's treatment needs based on the number and type of ASD symptoms or insurance coverage. However, minority parents were less likely to contact a doctor or health care professionals about their concerns, waiting years, rather than months as described by white families, to have the child evaluated. Although both white and minority families received similar types of care (e.g., conducting developmental tests, making a referral to a specialist, suggesting that the parent discuss the concern with the school), white families reported they were more formally engaged in the diagnostic process and subsequently visited a larger variety of service providers. White parents were more satisfied with the services that their child received from doctors and other health care providers whereas minority families indicated school services were more responsiveness to their needs. Recommended outreach efforts are suggested and described.
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12
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DuBay M, Watson LR, Zhang W. In Search of Culturally Appropriate Autism Interventions: Perspectives of Latino Caregivers. J Autism Dev Disord 2019; 48:1623-1639. [PMID: 29188586 DOI: 10.1007/s10803-017-3394-8] [Citation(s) in RCA: 38] [Impact Index Per Article: 6.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/28/2022]
Abstract
Most evidence-based autism spectrum disorder (ASD) interventions are tested with primarily White, mid-upper class, English-speaking populations, despite the increase in Latino children with ASD in early intervention programs throughout the United States. Unfortunately, interventions that are incongruent with a target population's culture may be relatively ineffective. This mixed-methods study explored how culturally appropriate, feasible, and acceptable Latino caregivers perceived intervention models, strategies, and targets. Survey data were compared for 28 Latino and 27 non-Latino White parents of young children with ASD. Further, 20 Latino caregivers participated in focus groups to describe their challenges, perspectives and preferences for intervention strategies and models, and unmet needs from providers. These findings underscore the need for culturally modified interventions for Latino children and families.
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Affiliation(s)
- Michaela DuBay
- Department of Allied Health Sciences, University of North Carolina at Chapel Hill, 321 S Columbia St., Chapel Hill, NC, 27516, USA.
| | - Linda R Watson
- Department of Allied Health Sciences, University of North Carolina at Chapel Hill, 321 S Columbia St., Chapel Hill, NC, 27516, USA
| | - Wanqing Zhang
- Department of Allied Health Sciences, University of North Carolina at Chapel Hill, 321 S Columbia St., Chapel Hill, NC, 27516, USA
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13
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Profiles of Social and Coping Resources in Families of Children with Autism Spectrum Disorder: Relations to Parent and Child Outcomes. J Autism Dev Disord 2019; 48:2064-2076. [PMID: 29362954 DOI: 10.1007/s10803-018-3467-3] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Abstract
This study described empirically derived profiles of parents' personal and social coping resources in a sample of 207 families of children diagnosed with autism spectrum disorder. Latent Profile Analysis identified four family profiles based on socieoeconomic risk, coping strategy utilization, family functioning, available social supports, and perceptions of family-centered support. During the time of children's transition to school, parents in the most disadvantaged group experienced the highest levels of parenting stress and depression, and their children had significantly lower adaptive behaviour scores and more parent-reported behavior problems than children in the other three groups. Results highlight the need for systematic surveillance of family risk factors so that supports can be provided to enhance both parental well-being and children's developmental health.
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14
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Fontil L, Sladeczek IE, Gittens J, Kubishyn N, Habib K. From early intervention to elementary school: A survey of transition support practices for children with autism spectrum disorders. RESEARCH IN DEVELOPMENTAL DISABILITIES 2019; 88:30-41. [PMID: 30851481 DOI: 10.1016/j.ridd.2019.02.006] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/31/2018] [Revised: 01/15/2019] [Accepted: 02/14/2019] [Indexed: 06/09/2023]
Abstract
BACKGROUND Early school transitions can be difficult for children, however, children with autism spectrum disorders (ASDs) often experience greater difficulty making the transition into school. Transition support practices, such as transition meetings, can facilitate successful school beginnings. AIMS The aim of the present study was to determine what type and amount of transition support practices early intervention (EI) service providers were implementing to support the transition to school of children with ASDs. Barriers and facilitators to transition planning were also evaluated. METHODS AND PROCEDURES Surveys were completed by program directors of 164 EI service providers across Canada. Program directors reported on transition support practices in use, as well as program level characteristics. OUTCOMES AND RESULTS Overall, Canadian EI providers reported using a high frequency of high-quality, individualized transition supports for children with ASD. Major barriers included a lack of government support and elementary school engagement. Specialized transition training and offering ASD-specific services were related to an increase in transition supports. CONCLUSIONS AND IMPLICATIONS The present study highlights areas for improvement in transition support practice and policy. Namely, increased government support could lead to increased levels of elementary school engagement, which has important implications for children's long- and short-term educational outcomes.
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Affiliation(s)
- Laura Fontil
- Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec H3A 1Y2, Canada.
| | - Ingrid E Sladeczek
- Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec H3A 1Y2, Canada.
| | - Jalisa Gittens
- Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec H3A 1Y2, Canada.
| | - Nataliya Kubishyn
- Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec H3A 1Y2, Canada.
| | - Kothar Habib
- Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec H3A 1Y2, Canada.
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Ilias K, Cornish K, Park MSA, Toran H, Golden KJ. Risk and Resilience Among Mothers and Fathers of Primary School Age Children With ASD in Malaysia: A Qualitative Constructive Grounded Theory Approach. Front Psychol 2019; 9:2275. [PMID: 30670992 PMCID: PMC6331527 DOI: 10.3389/fpsyg.2018.02275] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/16/2017] [Accepted: 11/01/2018] [Indexed: 12/03/2022] Open
Abstract
Little is known about the coping and resilience experiences of parents of children with autism spectrum disorder (ASD) in the Malaysian cultural context. This study utilized a qualitative methodological approach adopting constructive grounded theory. The study sought to address the lack of research to date exploring the risk and protective experiences that contribute to parental stress and resilience for parents of primary school age children with ASD in the Malaysian setting. Twenty-two parents of children with ASD (13 mothers and 9 fathers) participated in semi-structured interviews. A strength of the study was the inclusion of both mother and father participant perspectives. The interviews lasted 50-80 min (mean: 67.5 min). The 22 parents had a total of 16 children (12 males; 4 females) formally diagnosed with ASD. Child age ranged between 5 and 12 years (mean age: 8.44). Overall, analysis of the 22 interviews revealed four prominent themes - "initial reaction to child's ASD symptoms and diagnosis," "family life affected by a child with ASD," "awareness about ASD in Malaysia," and "coping strategies, wellbeing, and becoming resilient." The first three themes revolved around stress and adversity, and, the adaptability and acceptance of the parents. These processes illustrated the risks experienced by the parents of children with ASD in Malaysia. The last theme especially highlighted the strengths and determination of the parents and illustrated the protective experiences and processes that helped parents to develop and enhance resilience. Overall, the findings revealed that resilience develops synergistically and dynamically from both risk and protective experiences across different levels - individual, family, community, society and government. The findings motivated the development of our theoretical model of resilience that can help health and education professionals tailor assessment and interventions for parents of children with ASD in the Malaysian context. Clinical, policy, and research suggestions were discussed.
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Affiliation(s)
- Kartini Ilias
- Jeffrey Cheah School of Medicine and Health Sciences, Global Asia in the 21st Century Research Platform (GA21), Monash University Malaysia, Subang Jaya, Malaysia
- Department of Basic Sciences, Faculty of Health Sciences, Universiti Teknologi MARA, Puncak Alam, Malaysia
| | - Kim Cornish
- School of Psychological Sciences, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, VIC, Australia
| | - Miriam Sang-Ah Park
- Jeffrey Cheah School of Medicine and Health Sciences, Global Asia in the 21st Century Research Platform (GA21), Monash University Malaysia, Subang Jaya, Malaysia
- School of Social and Health Sciences, Leeds Trinity University, Leeds, United Kingdom
| | - Hasnah Toran
- Faculty of Education, Universiti Kebangsaan Malaysia, Bangi, Malaysia
| | - Karen Jennifer Golden
- Jeffrey Cheah School of Medicine and Health Sciences, Global Asia in the 21st Century Research Platform (GA21), Monash University Malaysia, Subang Jaya, Malaysia
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Nuske HJ, McGhee Hassrick E, Bronstein B, Hauptman L, Aponte C, Levato L, Stahmer A, Mandell DS, Mundy P, Kasari C, Smith T. Broken bridges-new school transitions for students with autism spectrum disorder: A systematic review on difficulties and strategies for success. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2018; 23:306-325. [PMID: 29458258 DOI: 10.1177/1362361318754529] [Citation(s) in RCA: 40] [Impact Index Per Article: 5.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Transitioning to a new school is often challenging for students with autism spectrum disorder. Few studies have examined the transition needs of students with autism spectrum disorder or the benefits of specific supports. This review synthesizes research findings on the difficulties that school transitions pose for students with autism spectrum disorder and their parents and teachers, and the strategies used to support students and parents during school transition. The review included 27 studies (10 examining the transition to primary school, 17 the transition to secondary school), with data from 443 students with autism spectrum disorder, 453 parents, and 546 teachers, across four continents (North America, Europe, Africa, and Australia). Studies reported that children with autism spectrum disorder struggled with anxiety and increased social pressure, their parents felt overwhelmed with complex placement decisions and worried about the well-being of their children, and teachers strove to provide appropriate supports to their students with autism spectrum disorder, often with inadequate resources. Findings indicated that the most useful strategies involved helping the student adjust to the new school setting, individualizing transition supports, clarifying the transition process for parents, and fostering communication both between the sending and receiving schools, and school and home.
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Eapen V, Grove R, Aylward E, Joosten AV, Miller SI, Van Der Watt G, Fordyce K, Dissanayake C, Maya J, Tucker M, DeBlasio A. Transition from early intervention program to primary school in children with autism spectrum disorder. World J Clin Pediatr 2017; 6:169-175. [PMID: 29259892 PMCID: PMC5695075 DOI: 10.5409/wjcp.v6.i4.169] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/10/2017] [Revised: 08/14/2017] [Accepted: 09/04/2017] [Indexed: 02/06/2023] Open
Abstract
AIM To evaluate the characteristics that are associated with successful transition to school outcomes in preschool aged children with autism.
METHODS Twenty-one participants transitioning from an early intervention program were assessed at two time points; at the end of their preschool placement and approximately 5 mo later following their transition to school. Child characteristics were assessed using the Mullen Scales of Early Learning, Vineland Adaptive Behaviour Scales, Social Communication Questionnaire and the Repetitive Behaviour Scale. Transition outcomes were assessed using Teacher Rating Scale of School Adjustment and the Social Skills Improvement System Rating Scales to provide an understanding of each child’s school adjustment. The relationship between child characteristics and school outcomes was evaluated.
RESULTS Cognitive ability and adaptive behaviour were shown to be associated with successful transition to school outcomes including participation in the classroom and being comfortable with the classroom teacher. These factors were also associated with social skills in the classroom including assertiveness and engagement.
CONCLUSION Supporting children on the spectrum in the domains of adaptive behaviour and cognitive ability, including language skills, is important for a successful transition to school. Providing the appropriate support within structured transition programs will assist children on the spectrum with this important transition, allowing them to maximise their learning and behavioural potential.
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Affiliation(s)
- Valsamma Eapen
- Academic Unit of Child Psychiatry, South West Sydney (AUCS), ICAMHS, Mental Health Centre, L1, Liverpool Hospital, Liverpool 2170, Australia
- School of Psychiatry, University of New South Wales, Sydney 2052, Australia
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
| | - Rachel Grove
- School of Psychiatry, University of New South Wales, Sydney 2052, Australia
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
| | - Elizabeth Aylward
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- KU Marcia Burgess Autism Specific Early Learning and Care Centre, Liverpool 2170, Australia
| | - Annette V Joosten
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- School of Occupational Therapy and Social Work, Curtin University, Perth 6000, Australia
| | - Scott I Miller
- Western Australia Autism Specific Early Learning and Care Centre, Bedford 6052, Australia
- Autism Association of Western Australia, Perth 6000, Australia
| | - Gerdamari Van Der Watt
- Western Australia Autism Specific Early Learning and Care Centre, Bedford 6052, Australia
- Autism Association of Western Australia, Perth 6000, Australia
| | - Kathryn Fordyce
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- St Giles Society North West Tasmania Autism Specific Early Learning and Care Centre, Burnie 7320, Australia
| | - Cheryl Dissanayake
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- La Trobe University, Melbourne 3000, Australia
| | - Jacqueline Maya
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- La Trobe University, Melbourne 3000, Australia
| | - Madonna Tucker
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- AEIOU Foundation, Nathan 4111, Australia
| | - Antonia DeBlasio
- Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket 4850, Australia
- AnglicareSA Daphne St Autism Specific Early Learning and Care Centre, Prospect 5082, Australia
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Marsh A, Spagnol V, Grove R, Eapen V. Transition to school for children with autism spectrum disorder: A systematic review. World J Psychiatry 2017; 7:184-196. [PMID: 29043156 PMCID: PMC5632603 DOI: 10.5498/wjp.v7.i3.184] [Citation(s) in RCA: 25] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/17/2017] [Revised: 05/29/2017] [Accepted: 07/03/2017] [Indexed: 02/05/2023] Open
Abstract
AIM To identify factors that promote a positive start to school for children with autism spectrum disorder (ASD).
METHODS Web of Science, MEDLINE, Scopus, and PsychINFO searches were conducted to identify literature published after 1991 and relevant to school transition processes in children with ASD. Twenty studies were deemed eligible for inclusion. These studies evaluated a range of factors including school readiness, parent and teacher perspectives on transition practices, characteristics of children with ASD that are associated with successful transition to school and the impact of school based intervention programs.
RESULTS A review of these studies showed that children with ASD are less school ready emotionally than their peers and those children with ASD appear to have more externalising behaviours and self-regulation difficulties that affect their school engagement and their relationships with their teachers. There was a paucity of research looking at interventions targeting school readiness. However, school-based behavioural interventions appear to improve cognitive, language and daily living skills, but have less impact on socialisation and peer inclusion.
CONCLUSION Children with ASD face more challenges transitioning to school, particularly with social interaction. Further development and implementation of specific school-based interventions is needed in order to assist children with autism to maximise their success in starting school.
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Affiliation(s)
- Annabel Marsh
- School of Psychiatry, University of New South Wales, Sydney NSW 2052, Australia
- Academic Unit of Child Psychiatry, South West Sydney Local Health District, Liverpool Hospital, Liverpool NSW 2170, Australia
| | - Vanessa Spagnol
- School of Psychiatry, University of New South Wales, Sydney NSW 2052, Australia
- Academic Unit of Child Psychiatry, South West Sydney Local Health District, Liverpool Hospital, Liverpool NSW 2170, Australia
| | - Rachel Grove
- School of Psychiatry, University of New South Wales, Sydney NSW 2052, Australia
- Academic Unit of Child Psychiatry, South West Sydney Local Health District, Liverpool Hospital, Liverpool NSW 2170, Australia
- Cooperative Research Centre for Living with Autism (Autism CRC), St Lucia QLD 4067, Australia
| | - Valsamma Eapen
- School of Psychiatry, University of New South Wales, Sydney NSW 2052, Australia
- Academic Unit of Child Psychiatry, South West Sydney Local Health District, Liverpool Hospital, Liverpool NSW 2170, Australia
- Cooperative Research Centre for Living with Autism (Autism CRC), St Lucia QLD 4067, Australia
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