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  1. Article: Machine Learning Prediction of Autism Spectrum Disorder Through Linking Mothers' and Children's Electronic Health Record Data.

    Li, Yongqiu / Huang, Yu / Yang, Shuang / Shychuk, Elahe M / Shenkman, Elizabeth A / Bian, Jiang / Angell, Amber M / Guo, Yi

    medRxiv : the preprint server for health sciences

    2024  

    Abstract: Autism spectrum disorder (ASD) is a neurodevelopmental disorder typically diagnosed in children. Early detection of ASD, particularly in girls who are often diagnosed late, can aid long-term development for children. We aimed to develop machine learning ... ...

    Abstract Autism spectrum disorder (ASD) is a neurodevelopmental disorder typically diagnosed in children. Early detection of ASD, particularly in girls who are often diagnosed late, can aid long-term development for children. We aimed to develop machine learning models for predicting ASD diagnosis in children, both boys and girls, using child-mother linked electronic health records (EHRs) data from a large clinical research network. Model features were children and mothers' risk factors in EHRs, including maternal health factors. We tested XGBoost and logistic regression with Random Oversampling (ROS) and Random Undersampling (RUS) to address imbalanced data. Logistic regression with RUS considering a three-year observation window for children's risk factors achieved the best performance for predicting ASD among the overall study population (AUROC = 0.798), boys (AUROC = 0.786), and girls (AUROC = 0.791). We calculated SHAP values to quantify the impacts of important clinical and sociodemographic risk factors.
    Language English
    Publishing date 2024-03-26
    Publishing country United States
    Document type Preprint
    DOI 10.1101/2024.03.24.24304813
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Challenges and Facilitators to Telehealth Occupational Therapy for Autistic Children During COVID-19.

    Angell, Amber M / Carreon, Elaine D / Akrofi, Joana N S / Franklin, Marshae D / Taylor, Elinor E / Miller, Julie / Crowley, Catherine / Maher, Shona Orfirer

    OTJR : occupation, participation and health

    2023  Volume 43, Issue 3, Page(s) 513–522

    Abstract: Pre-pandemic, telehealth occupational therapy (OT) for autistic children appeared promising, but research was limited. The pandemic provided a unique opportunity to investigate how clinics transitioned to telehealth. The purpose of this study was to ... ...

    Abstract Pre-pandemic, telehealth occupational therapy (OT) for autistic children appeared promising, but research was limited. The pandemic provided a unique opportunity to investigate how clinics transitioned to telehealth. The purpose of this study was to examine barriers and facilitators that influenced delivery of OT services through telehealth for autistic children during the pandemic. We conducted semi-structured qualitative interviews with 13 participants (three administrators, six OTs, and four parents of autistic children) at three Los Angeles area clinics over a 7-month period. We used narrative and thematic analysis to identify four themes. We identified (a) Challenges and (b) Facilitators to Conducting Telehealth OT, including practical strategies for successful facilitation, and (c) Negative and (d) Positive Outcomes of Conducting Telehealth OT. As telehealth will likely remain a viable means of OT service delivery in the future, our findings provide insight into ways that it can be improved and sustained.
    MeSH term(s) Humans ; Child ; COVID-19 ; Autistic Disorder ; Occupational Therapy ; Telemedicine ; Behavior Therapy
    Language English
    Publishing date 2023-01-03
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2081243-7
    ISSN 1938-2383 ; 1539-4492 ; 0276-1599
    ISSN (online) 1938-2383
    ISSN 1539-4492 ; 0276-1599
    DOI 10.1177/15394492221142597
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own".

    Angell, Amber M / Lindly, Olivia J / Floríndez, Daniella / Floríndez, Lucía I / Stein Duker, Leah I / Zuckerman, Katharine E / Yin, Larry / Solomon, Olga

    Autism : the international journal of research and practice

    2023  Volume 27, Issue 8, Page(s) 2407–2421

    Abstract: Lay abstract: Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use ... ...

    Abstract Lay abstract: Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child's physical health but not for their child's developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.
    MeSH term(s) Child ; Humans ; Autism Spectrum Disorder/diagnosis ; Autism Spectrum Disorder/ethnology ; Autism Spectrum Disorder/psychology ; Autism Spectrum Disorder/therapy ; Healthcare Disparities ; Hispanic or Latino/psychology ; Parents/psychology ; Pediatricians/psychology ; Physician's Role ; Decision Making, Shared ; Health Services Accessibility/statistics & numerical data ; Judgment ; Fear ; Parenting/ethnology ; Parenting/psychology ; Qualitative Research ; Complementary Therapies/methods ; Complementary Therapies/psychology ; Physician-Patient Relations
    Language English
    Publishing date 2023-04-17
    Publishing country England
    Document type Comparative Study ; Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
    ZDB-ID 1338513-6
    ISSN 1461-7005 ; 1362-3613
    ISSN (online) 1461-7005
    ISSN 1362-3613
    DOI 10.1177/13623613231163056
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article: 'If I was a different ethnicity, would she treat me the same?': Latino parents' experiences obtaining autism services.

    Angell, Amber M / Solomon, Olga

    Disability & society

    2017  Volume 32, Issue 8, Page(s) 1142–1164

    Abstract: This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider ... ...

    Abstract This article reports on an ethnographic study with 12 Latino families of children on the autism spectrum related to obtaining autism services in Los Angeles County. Using critical discourse analysis of interviews, observations, and records, we consider the experiences of the Latino families in relation to: 1) A discursively constructed 'autism parent' subject position that mandates 'fighting' service systems to 'win' autism services for children, originating from White middle-class parents' socio-economic resources and social capital; 2) A neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and 3) A media and institutional 'cultural deficit' discourse that attributes disparities in autism services for Latino children to their parents' presumed culturally-based 'passivity.' We argue that parental discourse about fighting, or not fighting, for autism services is engendered by a tension between a parental logic of care, and the logic of competition of the economic market.
    Language English
    Publishing date 2017-07-03
    Publishing country England
    Document type Journal Article
    ZDB-ID 2020858-3
    ISSN 1360-0508 ; 0968-7599
    ISSN (online) 1360-0508
    ISSN 0968-7599
    DOI 10.1080/09687599.2017.1339589
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Understanding parents' concerns about their children with autism taking public school transportation in Los Angeles County.

    Angell, Amber M / Solomon, Olga

    Autism : the international journal of research and practice

    2017  Volume 22, Issue 4, Page(s) 401–413

    Abstract: There are a number of recent US news media reports of children and youth with autism becoming lost, injured, or even dying while taking public school transportation, yet research on this problem is scarce. This ethnographic study examines the experiences ...

    Abstract There are a number of recent US news media reports of children and youth with autism becoming lost, injured, or even dying while taking public school transportation, yet research on this problem is scarce. This ethnographic study examines the experiences of 14 parents whose children with autism take public school transportation in Los Angeles County. We present two case studies of children with autism being "lost" while in transit from school to home on the bus to (1) describe how the situation was experienced, responded to, and managed by the parents; (2) consider three interrelated themes that emerged from interviews with 14 parents, related to children's safety, independence, and participation, across multiple contexts and analytic levels; and (3) discuss the findings in relation to US news media reports of incidents involving children with autism on school buses to identify specific weaknesses in school transportation infrastructure, particularly in the context of privatization, that create conditions in which children with autism can "fall through the cracks" in potentially life-threatening ways. We argue that there is a critical need to address transportation accessibility for individuals on the autism spectrum to ensure their safety and support their independence and community participation.
    MeSH term(s) Autistic Disorder/psychology ; Child ; Child, Preschool ; Female ; Humans ; Interviews as Topic ; Los Angeles ; Male ; Motor Vehicles ; Parents/psychology ; Safety ; Schools ; Transportation
    Language English
    Publishing date 2017-02-01
    Publishing country England
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, Non-P.H.S.
    ZDB-ID 1338513-6
    ISSN 1461-7005 ; 1362-3613
    ISSN (online) 1461-7005
    ISSN 1362-3613
    DOI 10.1177/1362361316680182
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article: Effects of Sex, Race, and Ethnicity on Primary and Subspecialty Healthcare Use by Autistic Children in Florida: A Longitudinal Retrospective Cohort Study (2012-2018).

    Angell, Amber M / Varma, Deepthi S / Deavenport-Saman, Alexis / Yin, Larry / Solomon, Olga / Bai, Chen / Zou, Baiming

    Research in autism spectrum disorders

    2022  Volume 94

    Language English
    Publishing date 2022-03-21
    Publishing country Netherlands
    Document type Journal Article
    ZDB-ID 2260224-0
    ISSN 1878-0237 ; 1750-9467
    ISSN (online) 1878-0237
    ISSN 1750-9467
    DOI 10.1016/j.rasd.2022.101951
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults.

    Hand, Brittany N / Angell, Amber M / Harris, Lauren / Carpenter, Laura Arnstein

    Autism : the international journal of research and practice

    2019  Volume 24, Issue 3, Page(s) 755–764

    Abstract: While there is emerging evidence on the prevalence of physical and mental health conditions among autistic adults, less is known about this population's needs during older adulthood (aged 65+). We conducted a cross-sectional retrospective cohort study of ...

    Abstract While there is emerging evidence on the prevalence of physical and mental health conditions among autistic adults, less is known about this population's needs during older adulthood (aged 65+). We conducted a cross-sectional retrospective cohort study of 2016-2017 Medicare data to compare the prevalence of physical and mental health conditions in a national sample of autistic older adults (N = 4685) to a matched population comparison (N = 46,850) cohort. Autistic older adults had significantly greater odds of nearly all physical health conditions including epilepsy (odds ratio = 18.9; 95% confidence interval = 17.2-20.7), Parkinson's disease (odds ratio = 6.1; 95% confidence interval = 5.3-7.0), and gastrointestinal conditions (odds ratio = 5.2; 95% confidence interval = 4.9-5.5). Most mental health conditions were more common among autistic older adults, including schizophrenia and psychotic disorders (odds ratio = 25.3; 95% confidence interval = 22.4-28.7), attention deficit disorders (odds ratio = 24.4; 95% confidence interval = 16.2-31.0), personality disorders (odds ratio = 24.1; 95% confidence interval = 17.8-32.5), and suicidality or self-inflicted injury (odds ratio = 11.1; 95% confidence interval = 8.9-13.8). Health conditions commonly associated with advanced age in the general population (e.g. osteoporosis, cognitive disorders, heart disease, cancer, cerebrovascular disease, osteoarthritis) were also significantly more common among autistic older adults. By highlighting the significant physical and mental health needs for which autistic older adults require care, our findings can inform healthcare systems, healthcare providers, and public health initiatives seeking to promote well-being in this growing population.
    MeSH term(s) Aged ; Aged, 80 and over ; Autistic Disorder/epidemiology ; Comorbidity ; Cross-Sectional Studies ; Female ; Humans ; Male ; Medicare/statistics & numerical data ; Mental Disorders/epidemiology ; Mental Health/statistics & numerical data ; Prevalence ; Retrospective Studies ; United States/epidemiology
    Language English
    Publishing date 2019-11-27
    Publishing country England
    Document type Journal Article
    ZDB-ID 1338513-6
    ISSN 1461-7005 ; 1362-3613
    ISSN (online) 1461-7005
    ISSN 1362-3613
    DOI 10.1177/1362361319890793
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: The social life of health records: understanding families' experiences of autism.

    Angell, Amber M / Solomon, Olga

    Social science & medicine (1982)

    2014  Volume 117, Page(s) 50–57

    Abstract: Outside of the epidemiological surveillance studies of autism prevalence, health records of children diagnosed with autism have not been sufficiently examined, yet they provide an important lens for showing how autism diagnosis, services and ... ...

    Abstract Outside of the epidemiological surveillance studies of autism prevalence, health records of children diagnosed with autism have not been sufficiently examined, yet they provide an important lens for showing how autism diagnosis, services and interventions are negotiated, coordinated and choreographed by families and practitioners across multiple settings. This article provides a multifaceted understanding of these processes from an ethnographic and discourse analytic perspective that reveals structural and interactional phenomena contributing to disparities in autism diagnosis and services. We consider health records as dualistic, material-discursive artifacts that are socio-interactionally co-constructed and variably interpreted, contested and utilized across home, school and clinic contexts. We chronicle several families' experiences of their children's autism diagnoses and interventions and describe ways in which health records are socially constructed, curated and placed in the middle of clinical encounters. We show how the parents in our study draw upon health records' material-discursive properties to display epistemic authority, expertise and knowledge in interactions with healthcare and school professionals involved in authorizing and planning their children's care. We describe how the parents experience the health records' clinical portrayals of their children and themselves, and how the parents' portrayals of their children are tacitly ratified or negated in the health records. The data include health record reviews, narrative interviews with parents and practitioners, and clinical observations. These data were collected between October 2009 and August 2012 as part of a larger study on disparities in autism diagnosis, interventions and services experienced by African American children with autism and their families living in Los Angeles County, California. Our analysis reveals the central role of health records in maintaining continuity of an autism diagnosis, interventions and services. This article contributes to enhanced professional awareness, parent-professional partnerships, and equity in the provision of healthcare and human services related to autism.
    MeSH term(s) African Americans ; Anthropology, Cultural ; Autistic Disorder/diagnosis ; Autistic Disorder/ethnology ; Autistic Disorder/psychology ; California ; Child ; Child, Preschool ; Electronic Health Records ; Female ; Health Services Accessibility ; Humans ; Male ; Parents/psychology
    Language English
    Publishing date 2014-07-08
    Publishing country England
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
    ZDB-ID 4766-1
    ISSN 1873-5347 ; 0037-7856 ; 0277-9536
    ISSN (online) 1873-5347
    ISSN 0037-7856 ; 0277-9536
    DOI 10.1016/j.socscimed.2014.07.020
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Using Photovoice as a participatory method to identify and strategize community participation with people with intellectual and developmental disabilities.

    Heffron, Jenna L / Spassiani, Natasha A / Angell, Amber M / Hammel, Joy

    Scandinavian journal of occupational therapy

    2018  Volume 25, Issue 5, Page(s) 382–395

    Abstract: Background: Adults with intellectual and developmental disabilities (I/DD) experience barriers to community participation, yet their insider experiences of environmental barriers and supports to participation are largely absent from the literature.: ... ...

    Abstract Background: Adults with intellectual and developmental disabilities (I/DD) experience barriers to community participation, yet their insider experiences of environmental barriers and supports to participation are largely absent from the literature.
    Aim/objective: The aims of this research were to evaluate Photovoice as a participatory research method, examine environmental barriers and supports to community participation, and develop strategies to support self-determination and community participation for and with people with I/DD.
    Material and method: This study utilized a participatory action research (PAR) approach in which participants used Photovoice during interviews and audits of participation environments to identify high interest participation activities and document supports and barriers in these environments. Data analysis utilized an iterative, participatory approach in which researchers and participants teamed up to select, contextualize, and codify the data. Thematic analyses involved both inductive and realist approaches.
    Results/findings: Participants included 146 community-dwelling adults with I/DD from three U.S. urban sites. We present a conceptual model of nine themes at microsystem, mesosystem, exosystem, macrosystem, and chronosystem environmental levels.
    Conclusions: Using Photovoice as a participatory method to strategize community participation can help ground systems change efforts in the voices of people with I/DD.
    Significance: By including people with I/DD in conversations that concern them, researchers and practitioners can support this population in ways that they find meaningful.
    MeSH term(s) Adult ; Community Participation ; Community-Based Participatory Research ; Developmental Disabilities ; Disabled Persons ; Female ; Humans ; Intellectual Disability ; Male ; Photography ; Research Design
    Language English
    Publishing date 2018-10-03
    Publishing country England
    Document type Journal Article
    ZDB-ID 2144132-7
    ISSN 1651-2014 ; 1103-8128
    ISSN (online) 1651-2014
    ISSN 1103-8128
    DOI 10.1080/11038128.2018.1502350
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Sex Differences in Co-occurring Conditions Among Autistic Children and Youth in Florida: A Retrospective Cohort Study (2012-2019).

    Angell, Amber M / Deavenport-Saman, Alexis / Yin, Larry / Zou, Baiming / Bai, Chen / Varma, Deepthi / Solomon, Olga

    Journal of autism and developmental disorders

    2021  Volume 51, Issue 10, Page(s) 3759–3765

    Abstract: Autistic children have a high prevalence of co-occurring mental health, developmental/behavioral, and medical conditions, but research on sex/gender differences has been mixed. We used Florida healthcare claims data to characterize sex differences ( ... ...

    Abstract Autistic children have a high prevalence of co-occurring mental health, developmental/behavioral, and medical conditions, but research on sex/gender differences has been mixed. We used Florida healthcare claims data to characterize sex differences (female/male) in co-occurring conditions among autistic children ages 1-21 (N = 83,500). After adjusting for age, race, ethnicity, urbanicity, and insurance, autistic girls had significantly higher odds of anxiety disorders, mood disorders, intellectual disability, developmental disorders, epilepsy, metabolic disorders, gastrointestinal disorders, and sleep disorders compared to autistic boys. Autistic girls had significantly lower odds of ADHD. The findings contribute to the growing body of research on the unique healthcare needs of autistic girls.
    MeSH term(s) Adolescent ; Adult ; Autism Spectrum Disorder/epidemiology ; Autistic Disorder/epidemiology ; Child ; Child, Preschool ; Female ; Florida/epidemiology ; Humans ; Infant ; Male ; Retrospective Studies ; Sex Characteristics ; Sex Factors ; Young Adult
    Language English
    Publishing date 2021-01-04
    Publishing country United States
    Document type Journal Article
    ZDB-ID 391999-7
    ISSN 1573-3432 ; 0162-3257
    ISSN (online) 1573-3432
    ISSN 0162-3257
    DOI 10.1007/s10803-020-04841-5
    Database MEDical Literature Analysis and Retrieval System OnLINE

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