Amber Angell PhD, OTR/L

The COVID-19 pandemic necessitated a transition to telehealth. Research supports the use of telehealth; however, there is a paucity of literature on the ethical considerations of this shift. This study explored ethics through narratives of practitioners’ lived experiences of transitioning to telehealth. Semi-structured interviews were conducted virtually with 10 pediatric health care professionals. Transcripts were analyzed from a narrative phenomenological perspective. Discussed themes include responding to the rapid redirection, collaborating with colleagues and caregivers, applying therapeutic use of self, and evolving pragmatic clinical reasoning. Transitioning to telehealth resulted in ethical dilemmas pertaining to clients and practitioners. The need for additional support was salient to ensure clients received beneficial services that would not cause harm (non-maleficence). Communities of practice formed organically as forums to explore strategies for sharing comprehensive and equitable information (veracity and justice). Knowledge generated through providers’ experiences may inform future guidelines on service delivery transitions.

Purpose. The purpose of this retrospective cohort analysis was to investigate sex differences in receipt of standard of care sleep and constipation drug treatments among autistic children and youth with sleep disorder and constipation, respectively.

Methods. We used the data from the OneFlorida + Data Trust to analyze healthcare claims for 19,877 autistic patients with sleep disorder and 32,355 patients with constipation, ages 1 to 22. We used logistic regression to examine sex differences in receiving sleep and constipation treatments, and a multivariate logistic regression model to further assess sex differences in ever receiving sleep and constipation treatments, adjusting for age, race, ethnicity, and urbanicity.

Results. In our multivariate analysis, autistic girls with sleep disorder were 1.27 times more likely than boys to receive sleep treatment (p < 0.0001). Although autistic girls with constipation appeared to be 1.10 times more likely than boys to receive treatment, it was not significantly different after adjusting for demographic and socio-economic characteristics (p = 0.372). Older children were 1.09 times more likely than younger children to receive sleep treatment (p < 0.0001) and 1.07 times more likely to receive constipation treatment (p < 0.0001).

Conclusion. We did not find sex differences among autistic children for treatment of constipation, but autistic girls with sleep disorder were significantly more likely to have ever received treatment, which could indicate that girls experience more significant sleep disorders.

This study drew on familial autoethnographic and narrative methodologies to analyze the lived experiences of a mother (Ruth), the first author’s grandmother, situated within the cultural and societal context of 1950s America, to understand the choice she made at that time to care for her son with Down syndrome rather than place him in an institution. This study sought to better understand the contextual factors that influenced this mother to make decisions outside of her cultural contexts, while also recognizing the cultural and personal factors that may support or enable such decisions. We then discuss how such factors may be relevant for contemporary contexts.

Keywords. Disability; lived experiences; narrative; familial autoethnography; motherhood; cultural context

Camouflaging, the masking of neurodivergent traits to blend in with the dominant neurotypical society, is reported among autistic women. At the core of camouflaging, however, is the desire to belong, which is yet to be explored in the literature despite its costly impacts on one's quality of life. Occupational science, a discipline concerned with human doing and belonging is uniquely situated to address camouflaging. Yet, camouflaging has not been explored from an occupational science lens. Therefore, in this conceptual article, we first explore the unique perspective that occupational science contributes to camouflaging scholarship. Given the dearth of camouflaging research and scholarship on autistic women with intersecting identities (e.g., Black autistic women), we draw from Bailey and Mobley's Black Feminist Disability Framework. Second, analyzing existing qualitative narratives in camouflaging research, we illuminate “occupational disruptions,” or potential risk factors of camouflaging, focusing on the work environment, educational settings, and interpersonal and intimate relationships. We highlight the importance of understanding Black autistic women's unique experiences of occupational disruptions. Third, we consider how unmasking is a privilege not granted to those beyond the margins. Finally, we conclude with implications and future directions for interdisciplinary research and scholarship, including a critique of our discipline's paradoxical relationship between belonging theory and camouflaging, therapeutic considerations (masking vs. unmasking safely), and a call to action for scholars, practitioners, and allies to challenge the need for camouflaging to belong, thereby mitigating existing occupational disruptions.

What was the purpose of this article? We (the authors) are concerned about the negative outcomes that autistic women experience related to camouflaging. Camouflaging, sometimes called “masking” or “passing as neurotypical,” is something that neurodivergent people might do to hide their neurodivergent traits so that they are accepted by other people, or to be safe in a neurotypical society. In this article, we discuss camouflaging from an occupational science perspective. Occupational science is an academic discipline that is related to occupational therapy that focuses on human doing and belonging.

Why is this article important? This article is important for several reasons. First, camouflaging impacts the quality of life of autistic people, and we believe that it is closely associated with the deep human need for belonging. In this article, we use occupational science concepts to add a new perspective to current discussions among autistic people and researchers about camouflaging. Recognizing that Black autistic women are almost entirely ignored by researchers and that they might be marginalized based on their race, gender, and neurotype, we also use a Black Feminist Disability Framework to highlight the unique experiences of people with intersecting marginalized identities. Finally, the authors, both neurodivergent and allistic (nonautistic), from various racial and ethnic backgrounds, bring a richness of perspectives based on our diverse life experiences and areas of expertise.

What did the authors do? We applied our unique occupational science perspective to camouflaging. First, we discussed camouflaging in relation to the occupational science concept of belonging and described a Black Feminist Disability Framework. Second, we analyzed the lived experiences of autistic women, using quotes from academic articles. We brought the readers' attention to the lack of diversity within camouflaging literature, which has amplified the voices of White autistic women, while marginalizing women of color. Third, we showed how unmasking is a privilege for White autistic women, but not for autistic women with intersecting identities.

What did the authors conclude? We concluded that camouflaging disrupts various occupations, or important activities people want to do. We also provided a call to action for occupational scientists, occupational therapists, the broader research community, and allies to make environments more inclusive and safer for diverse autistic people.

How does this information help autistic adults? We hope our analysis provides autistic women with the words to describe their experiences, including how camouflaging may have caused occupational disruptions in their lives. We also hope that our call to action contributes to making spaces safer for autistic women.

Neonatal intensive care unit (NICU) co-occupations may impact parent–infant outcomes. The main objective of this study was to explore relationships between parent and infant outcomes based on whether sensory-based interventions (co-occupations) occurred most often between parent–infant dyads or provider/volunteer–infant dyads. Thirty-five families received the Supporting and Enhancing NICU Sensory Experiences (SENSE) program, which includes education defining specific amounts of sensory exposures for infants to receive each day of NICU hospitalization (with a preference for parent delivery). Infant sensory experiences in the NICU were logged, and dyads were grouped based on who conducted most of the sensory interventions with the infant in the NICU into a Parent–Infant Co-occupation group or Other Administered group. The Parent–Infant Co-occupation group had infants with less lethargy on the NICU Network Neurobehavioral Scale (p = .04), and parents with lower scores on the Parental Stress Scale (p = .003) and State-Trait Anxiety Inventory-state (p = .047). Parent–infant engagement in co-occupations was related to parental mental health and infant neurobehavior.

Keywords. development; engagement; environment; family-centered care; intervention; parent mental health; parent–infant interaction; participation; sensory.

Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism “diagnostic odyssey.” Pediatricians have a critical role in the “diagnostic odyssey,” but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the “diagnostic odyssey” but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians’ autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children.

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.

Background. Autistic children and youth have high rates of co-occurring conditions,but little is known about how autism subgroups (girls, non-White children) access healthcare to treat them. The purpose of this longitudinal retrospective cohort study was to investigate differences by sex, race, and ethnicity in non-acute (primary and subspecialty) healthcare use by autistic children and youth.

Method. We used the OneFlorida Data Trust to measure healthcare use for 82,566 autistic children ages 1–21 (2012–2018). We investigated (1) the odds of using any healthcare and (2) annual healthcare usage rates. We adopted a logistic regression and multiple linear regression for each of the dependent variables (total non-acute, primary care, gastroenterology (GI), developmental-behavioral pediatrics (DBP), psychiatry/psychology, neurology, and total subspecialty visits), adjusting for potential confounders (sex, race, ethnicity, age at visit, insurance type, urbanicity, and co-occurring conditions).

Results. Autistic boys had significantly higher odds of any neurology and psychiatry/psychology visits, but lower annual rates of primary care, GI, and neurology visits. Black/African American autistic children had significantly higher odds of any primary care, DBP, and neurology visits, but lower odds of any GI visits, and lower annual rates of primary care, GI, DBP, and neurology visits. Hispanic/Latinx autistic children had significantly higher odds of any primary care, DBP, and neurology visits, but lower odds of psychiatry/psychology visits; and higher annual rates of neurology visits, but lower annual rates of GI, DBP, and psychiatry/psychology visits.

Conclusions. We found significant differences by sex, race, and ethnicity in non-acute healthcare use by autistic children.

Keywords. Autism spectrum disorders; Sex/gender; Healthcare utilization

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.

Keywords. Autism spectrum disorder, Co-occurring condition, Sex, Gender, Healthcare claims, Girls

Importance. A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community.

Objective. To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition.

Design. The ADA–Participatory Action Research Consortium (ADA–PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA–PARC project.

Setting. ADA–PARC community partners across the United States.

Participants. One hundred fifty-three adults with disabilities.

Outcomes and Measures. We used a semistructured interview guide to ask participants about their experiences during and after transition to the community.

Results. We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents “living a life,” (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community.

Conclusions and Relevance. As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation.

What This Article Adds. People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients’ sense of identity and self-confidence during and after transition to the community.

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.

Observational research benefits from inclusion of diverse cohorts. To characterize racial and ethnic diversity in observational and natural history research studies of Duchenne muscular dystrophy (DMD), highly cited and influential observational studies were identified. Fourteen United States-based articles were included. All studies cited >70% White participants with the majority having few racial minority participants. Enrollment of Black/African American individuals was particularly limited (<5% in all but one study), and Hispanic/Latino participants ranged from 3.3– 26.5% of cohorts. These results suggest a need for effective strategies to recruit, enroll, and retain racially and ethnically diverse populations into observational research in DMD.

School-based occupational therapists are well-equipped to prepare adolescents to transition from the education system to work and live in their communities, but they report challenges in securing their place on post-secondary transition planning teams. We argue that occupational therapists’ efforts to advocate for their role in post-secondary transition could be strengthened by a deeper engagement with what is considered “best practice” in transition planning: improving students’ ability and opportunity to exercise self-determination. In this commentary, we review the self-determination evidence-base; identify congruence between the underlying philosophies of self-determination and occupational therapy; and highlight gaps in existing self-determination models that occupational therapists are uniquely posed to fill by focusing on self-determination as they support transition age students.

Keywords. Self-determination, transition, post-secondary, adolescent.

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.

Keywords. Community participation, barriers, supports, disability, participatory action research, Photovoice.

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.

As rates of autism spectrum disorder (ASD) in the United States have continued to rise, there is evidence of racial and ethnic disparities in ASD prevalence and services access. Compared to White children, children from racial and ethnic minority groups are less likely to be diagnosed with ASD and more likely to be mis-diagnosed or diagnosed later; and once diagnosed, they receive fewer ASD services. In this article, we review current knowledge about ASD disparities, including the complex and multifaceted causes. We highlight areas where further research is needed. Finally, we review promising practices to address ASD disparities, arguing that efforts to reduce disparities are needed at multiple levels such as parent education, widespread adoption of screening in healthcare and community settings, and effective interventions developed for community and school settings.

Keywords. Autism spectrum disorder, Diagnosis, Services, Disparities.

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: a discursively constructed ‘autism parent’ subject position that mandates ‘fighting’ service systems to ‘win’ autism services for children, originating from White middle-class parents’ socioeconomic resources and social capital; a neoliberal social services climate that assumes scarcity of available resources and prioritizes austerity in their authorization; and 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.

This article examines six cases of publicly funded Applied Behavior Analysis (ABA) therapy for Latino children with autism spectrum disorder (ASD) to contribute to thinking about occupational justice. In this ethnographic study of six Latino families of children with ASD in Los Angeles County, all families were offered ABA for their children, but five families experienced occupational challenges leading them to insist on modifications of ABA or to opt out of the service. We consider in each case (a) how the families' experiences can be understood occupationally, (b) how ABA affected the functionings and capabilities of the children and their families, and (c) how the parents' accounts relate to occupational justice. Applying the capabilities approach can help operationalize the concept of occupational justice as a tool to evaluate social policy across cases.

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child-parent-doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)-parent-doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctor's office, the tacit expectations about the visit may have to be renegotiated to facilitate the child's, the parent's, and the doctor's participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

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.

The call for a more socially responsive occupational science demands critical analysis of occupational injustice. While scholarship has highlighted the role of occupation in social transformation, less attention has been paid to the role of occupation in perpetuating the hegemonic social order. This paper explores the mechanisms of social inequality by arguing that occupation can be a site of reproduction of the social order such as gender, race and class. I will ground my argument in Black feminist theory and sociological interactional theory, showing how gender, race and class can be experienced as linked systems of oppression. Three developments in occupational science will be outlined as a foundation for an occupation-centered analysis of social difference: the increased attention to inequality in opportunity for occupational participation based on social categories such as gender, race, and class; the development of occupation-centered analyses; and the movement from individualistic to contextual approaches which consider all occupation to be inherently intersubjective. I will show how an occupation-centered analysis of social difference reveals the ways that occupation can be a site of both resistance to and reproduction of the social order. Finally, I will use ethnographic material from Barry Thorne's (1999) Gender Play: Girls and Boys in School and Ann Arnett Ferguson's (2001) Bad Boys: Public Schools in the Making of Black Masculinity for analysis, focusing on the occupations of school-aged children.

Keywords. Occupational justice, Black feminist theory, Critical occupational science, Gender, Race, Class.

Among the various disciplines that address pediatric feeding disorders, there is increasing awareness of the complex and multifaceted factors that must be addressed. There remains a need for a universal classification system that would provide a common language and guide treatment strategies. The group of children who have been traditionally labeled “picky eaters” is examined, including the link between tactile defensiveness and selective eating, the anxiety that these children and their caregivers experience, and the need to address both sensory sensitivity and anxiety. Treatment methods are explored, including approaches that incorporate the caregiver in intervention sessions.

Keywords. growth and development, early life span nutrition, eating disorders, selective eating.