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LAY ABSTRACT: Using telehealth to provide services to families and children with autism has grown since the start of the COVID-19 pandemic. Yet, we still know less about telehealth models that use both virtual sessions and online materials to support families. Research suggests it is important to make sure an intervention matches the characteristics of a child with autism, but fewer studies have examined the importance of matching an intervention to parent characteristics. In this study, we looked at parent characteristics (25 parents included in the study) before a parent coaching telehealth intervention for potty training in autism. We specifically looked at how parent competence (i.e. how confident and effective one feels with parenting) levels before the intervention influenced the usage of online education materials (i.e. podcasts/tip sheets). Results suggested that parents with lower competence used the online materials more often than parents with higher competence, and often made greater gains in parent competence during the intervention. Both parents with lower and higher competence found the intervention acceptable. Future research should study additional parent characteristics in a larger sample to better understand how to tailor interventions to meet both parent and child needs.
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COVID-19 , Tutoría , Padres , Telemedicina , Humanos , Padres/educación , Femenino , Tutoría/métodos , Masculino , Adulto , COVID-19/prevención & control , Responsabilidad Parental , Niño , Trastorno Autístico/terapiaRESUMEN
PURPOSE: We sought to conduct a pilot investigation of the reliability and administration fidelity of a new play-based measure of social communication for infants and toddlers with an autism diagnosis. METHOD: Our team adapted an existing measure, the Early Communication Indicator (ECI), for use with young autistic children in clinical and research contexts. In this brief report, we detail our adaptation process including administration and scoring of the final adapted measure based on data from a two-phase pilot study with young autistic children (N = 17). RESULTS: This adapted measure, the Early Communication Indicator-Autism (ECI-A), captured a range of scores for the ECI, Initiation of Joint Attention, and Directed Communication in pilot testing. Interrater reliability was moderate to strong across the scored behaviors. Finally, parents were able to administer the ECI-A with high fidelity with support from the research staff. CONCLUSIONS: This two-phase pilot study demonstrated promise for the ECI-A as a brief measure of social communication that can be administered by parents and reliably scored by trained staff with limited background in autism assessments. Validation of the ECI-A is presently underway. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.26042077.
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Historically marginalized racial and ethnic groups are underrepresented in autism research broadly; however, patterns of inclusion in occupational therapy research are unknown.In this secondary data analysis, we examined race and ethnicity reporting across articles included in a systematic review of evidence related to occupational therapy practice with autistic individuals <18 years (2013-2021).Two team members reached >90% interrater coding agreement in race and ethnicity reporting across articles in ADLs/IADLs, education/work, play, sleep, and social participation in clinics, homes/communities, and schools.Intervention outcomes of ADL/IADLs (66.7%) and play (66.7%) had low rates of reporting, while social participation in schools (100%) and education/work (100%) had higher rates of reporting. Sample diversity was greatest among research in schools and most limited in clinic-based settings.Systemic racism that limits individuals' participation in occupational therapy research perpetuates racial and ethnic health inequities among autistic children and adolescents.
Who is included in occupational therapy research among autistic youth?In research that guides occupational therapy practice with autistic youth, we need an understanding of the participants that were included in the research. Historically marginalized racial and ethnic groups are typically not included in the research, so we examined articles that informed occupational therapy practice for autistic youth. We found that different areas of intervention (e.g., play, education/work) had different rates of reporting. The most diverse samples were included in schools and were most limited in clinic-based settings. This is important because systemic racism can influence occupational therapy research and practice.
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Trastorno Autístico , Etnicidad , Terapia Ocupacional , Humanos , Adolescente , Niño , Trastorno Autístico/etnología , Grupos Raciales , Participación Social , Actividades Cotidianas , MasculinoRESUMEN
Purpose: This study explored the impact of delayed and foregone care due to COVID-19 on well-being among disabled and gender diverse adults. Methods: Using data from the 2021 National Survey on Health and Disability and logistic regression modeling we assessed the impact of delayed or foregone care due to COVID-19 on well-being among disabled people (n = 1638), with comparisons between cisgender (n = 1538) and gender diverse (n = 100) people with disabilities. We report odds ratios (OR) and confidence intervals (CI). Results: Disabled people reported high rates of delayed (79.36%) and foregone (67.83%) care and subsequent negative effects on well-being (72.07%). Gender diverse disabled people were over four times more likely to have delayed any care (OR 4.45, 95% CI 1.86-10.77) and three times more likely to have foregone any care (OR 3.14, 95% CI 1.71-5.79) due to COVID-19 compared to cisgender disabled people. They were three times more likely to report any negative impact on their health and well-being because of delayed and foregone care (OR 2.78, 95% CI 1.43-5.39). Conclusion: The COVID-19 pandemic affected the health care utilization of disabled people, resulting in high rates of delayed care, foregone care, and negative impacts on well-being. These effects were intensified at the intersection of disability and marginalized gender identity, with gender diverse disabled people having higher odds of delayed and foregone care and negative effects on well-being, including physical health, mental health, pain levels, and overall level of functioning.
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COVID-19 , Personas con Discapacidad , Adulto , Humanos , Masculino , Femenino , Identidad de Género , Pandemias , Aceptación de la Atención de SaludRESUMEN
Parents of children with pediatric feeding disorder (PFD) often experience high stress and may be at advanced risk for mental health conditions. We conducted a retrospective chart review of 413 parents who completed intake surveys at an interdisciplinary feeding clinic to determine the prevalence and types of mental health conditions among parents; 41.8% of parents reported a mental health diagnosis among the mother and/or father. Of the parents with mental health conditions, the most prevalent conditions reported were anxiety (71.1% for mothers, 50% for fathers) and mood disorders (62.7% for mothers, 40.9% for fathers). For mothers, 21.1% indicated their mental health disorder had a postpartum onset. Parents of children with birth complications were more likely to have a mental health condition (50.9%) than parents of children without a birth complication (38.7%), and parents reporting mental health conditions had children with significantly more co-occurring medical conditions. Since parent stress and mental health can influence parent-child interactions during mealtime, this study suggests the importance of addressing both parent mental health factors and child factors when treating children for PFD. Future studies are needed to develop novel interventions that support the specific mental health needs of parents of children with PFD.
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Salud Mental , Padres , Femenino , Humanos , Masculino , Prevalencia , Estudios Retrospectivos , Padres/psicología , Madres/psicología , Padre/psicologíaRESUMEN
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings to support participation in play for autistic1 children and adolescents (birth to 18 yr).
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Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from clinic-based studies to support social participation for autistic1 children and adolescents (birth to 18 yr).
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Trastorno Autístico , Terapia Ocupacional , Adolescente , Niño , Humanos , Participación Social , Revisiones Sistemáticas como AsuntoRESUMEN
Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings to support social participation in school contexts for autistic1 children and adolescents (birth to 18 yr).
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Trastorno Autístico , Terapia Ocupacional , Adolescente , Niño , Humanos , Instituciones Académicas , Participación Social , Revisiones Sistemáticas como AsuntoRESUMEN
Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings to support social participation for autistic1 children and adolescents (birth to 18 yr) in homes and communities.
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Trastorno Autístico , Terapia Ocupacional , Adolescente , Niño , Humanos , Participación Social , Revisiones Sistemáticas como AsuntoRESUMEN
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from the systematic review on interventions to support participation in sleep for autistic1 children and adolescents (birth to 18 yr).
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Trastorno Autístico , Terapia Ocupacional , Revisiones Sistemáticas como Asunto , Adolescente , Niño , Humanos , Práctica Clínica Basada en la Evidencia , SueñoRESUMEN
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from the systematic review on interventions to support autistic1 children and youth (up to 18 yr old) and focuses on participation in education settings.
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Trastorno Autístico , Terapia Ocupacional , Adolescente , Niño , Humanos , Práctica Clínica Basada en la Evidencia , Estudiantes , Revisiones Sistemáticas como AsuntoRESUMEN
Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from the systematic review on interventions to support participation in basic and instrumental activities of daily living by autistic1 children and adolescents (birth to 18 yr).
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Trastorno Autístico , Terapia Ocupacional , Niño , Humanos , Adolescente , Actividades Cotidianas , Práctica Clínica Basada en la EvidenciaRESUMEN
Background: Lesbian, gay, bisexual, transgender, or queer (LGBTQ+) people and disabled people experience disparities in access to health care compared with others. However, we have yet to understand how health care disparities may be further exacerbated at the intersection of disability and LGBTQ+ identity, particularly among autistic people. Objectives: The primary goals of this study were to (1) examine differences in unmet health care needs and health status between LGBTQ+ autistic people and straight/cisgender autistic people and (2) explore how state policies and demographics predict the unmet health care needs of the autistic LGBTQ+ people. Methods: We conducted a cross-sectional analysis using data from the 2019 National Survey on Health and Disability that included a subsample of autistic participants, with 62 LGBTQ+ adults and 58 straight/cisgender adults. To address our first study goal, we used an independent samples t-test, and to address our second study goal, we used Poisson regression. Results: The LGBTQ+ group reported significantly more days of poor physical and mental health, more co-occurring diagnoses, and more unmet health care needs than the straight/cisgender group. For LGBTQ+ people, protective state health care laws and a lower income resulted in significantly more health care needs being met. Conclusions: Findings from this study suggest that the intersection of an LGBTQ+ identity and autism is associated with greater disparities in physical and mental health as well as unmet health care needs; however, state policies prohibiting discrimination of LGBTQ+ people may act as a protective factor and result in fewer unmet health care needs. Future research should examine additional structural factors that may mitigate health inequities for autistic LGBTQ+ people.
Why is this an important issue?: More people in the autistic community identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) as compared with the general population. Previous research described poorer health outcomes and issues in accessing health care for LGBTQ+ people. We need to understand how identifying as both autistic and LGBTQ+ is related to health outcomes and getting health care needs met. This is important information to improve future health care access and reduce health care issues. What was the purpose of this study?: We wanted to see whether there were differences between autistic/LGBTQ+ people and autistic/straight/cisgender people in accessing health care and health status. We also wanted to understand what factors contributed to unmet health care needs for autistic/LGBTQ+ people. What did the researchers do?: Our team used data from the second wave of the National Survey on Health and Disability (NSHD) fielded from October 2019 through January 2020. The NSHD sample included 2175 disabled participants, and 120 participants of the sample self-identified as autistic. We compared responses of autistic/LGBTQ+ people with autistic/straight/cisgender respondents. We compared these two groups on responses related to the number of good mental and physical health days, number of unmet health care needs, and number of additional diagnoses. We also looked at whether a person's income, location, race, or ethnicity, as well as whether state laws that supported LGBTQ+ health care related to the increased unmet health care needs of the LGBTQ+ group. What were the results of the study?: The results suggested that the autistic/LGBTQ+ group reported fewer good health days, more unmet health care needs, and more diagnoses. The authors also found that state-wide health care laws that protected LGBTQ+ people related to more health care needs being met. LGBTQ+ people with a lower income also had fewer unmet health care needs. What do these findings add to what was already known?: These findings are like other studies suggesting that identifying as autistic and LGBTQ+ results in more unmet health care needs and poorer health status. Our study adds to what is already known by exploring how other factors relate to the increased unmet health care needs among autistic/LGBTQ+ people. What are potential weaknesses in the study?: The NSHD subsample was small that may affect the study findings. Our sample also lacked diversity and primarily included White non-Hispanic/non-Latine participants, and those living in urban areas. The lack of diversity limits the generalizability of our findings. There are also many other factors (e.g., culture and provider knowledge) that may relate to unmet health care needs in autistic/LGBTQ+ people. Future research should investigate additional factors related to unmet health care needs. How will these findings help autistic adults now or in the future?: The findings are important because few research studies have focused on health care access among autistic/LGBTQ+ people in the United States. This study indicates the health care system is not supporting positive health outcomes and health care needs of autistic/LGBTQ+ adults. We need to continue to develop ways to support training of providers to reduce unmet health care needs and support better health outcomes.
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BACKGROUND: Independence in toileting is a vital skill, yet toilet-training interventions for children with autism are limited. OBJECTIVES: We investigated the acceptability and preliminary efficacy of a hybrid telehealth intervention that used synchronous individualized coaching sessions and asynchronous online educational materials to support parents in toilet training their children with autism. METHOD: Participants included 34 families of children with autism ages 2 to 8 years. Measures were administered at pre- and postintervention (10-12 weeks) and included the Toileting Behavior Questionnaire, Goal Attainment Scaling, and Canadian Occupational Performance Measure. RESULTS: Twenty-five families completed all intervention procedures. Parents found the intervention highly acceptable and reported significant improvements in child toileting behaviors; however, families accessed the asynchronous intervention materials at a low rate. CONCLUSION: A parent coaching model delivered through telehealth may be a promising method to increase toileting independence among families of young children with autism.
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Trastorno del Espectro Autista , Trastorno Autístico , Telemedicina , Humanos , Niño , Preescolar , Control de Esfínteres , Canadá , Padres , Telemedicina/métodosRESUMEN
Approximately 3-10% of children have severe feeding issues, and some require enteral/tube nutrition to grow and thrive. For many children, tube feeding is temporary, making efficacious interventions for tube weaning essential. We conducted a systematic review and meta-analysis of tube weaning treatments. Outcomes included percentage of participants completely weaned from the tube, and mean percentage of kilocalories consumed orally following treatment. Data were extracted from 42 studies, including cohort studies and single-subject research design studies. We evaluated moderators of treatment success, including treatment setting, use of behavioral approaches, use of hunger provocation, and use of a multidisciplinary approach. Results indicated that, after treatment, children received significantly more calories orally, and 67-69% of children were fully weaned. These analyses suggest that current interventions are generally effective; however, variability within treatments exist. Prospective randomized clinical trials are needed to understand effective components of weaning interventions.
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Nutrición Enteral , Conducta Alimentaria , Niño , Humanos , Destete , Estudios Prospectivos , Nutrición Enteral/métodosRESUMEN
LAY ABSTRACT: Feeding problems are common among autistic children and are linked to negative health consequences. Therefore, understanding feeding problems and factors that influence these behaviors is important for developing supports for children and families. While certain sensory processing patterns are commonly associated with feeding problems, less is known about the link between sensory processing and feeding behaviors in autism, as well as how parent behaviors and feelings during mealtime differ based on child sensory preferences. This research examined two groups of young autistic children who were reported to be picky eaters by their parents: those with and those without oral hypersensitivity. Children with oral hypersensitivity had more difficulty with food acceptance and their parents reported more negative feelings around feeding their child. However, the two groups of children (oral hypersensitive and not) did not differ in their medical/oral motor symptoms, mealtime behavior, or parent use of strategies at mealtimes. This research supports the need for personalized treatment strategies based on the child's sensory preferences to support both the child and parent in managing mealtimes.
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Trastorno del Espectro Autista , Trastorno Autístico , Niño , Humanos , Trastorno Autístico/complicaciones , Trastorno del Espectro Autista/complicaciones , Conducta Alimentaria , Padres , Conducta InfantilRESUMEN
Purpose: Research about children tends to consider differences from expected patterns problematic, and associates differences with disabilities [e.g., Autism, attention deficit hyperactivity disorder (ADHD)]. When we focus on disabilities and consider differences automatically problematic, we miss the natural variability in the general population. The International Classification of Functioning, Disability and Health (ICF 11) acknowledges that the experience of disability results from interactions between "environmental" and "personal" factors which determine the person's capacity to participate. The purpose of this study was to examine sensory patterns across a national sample of children in the general population and samples of children with disabilities to investigate the extent to which differences in sensory processing are representative of natural variability rather than automatically problematic or part of a disability. Materials and Methods: We employed descriptive statistics and chi-square tests to examine sensory processing patterns in children in the general population and autistic children and children with ADHD. We used standardization and validity data from the Sensory Profile 2 to conduct analyses. Results: Consistent sensory patterns exist across all groups. Children in all groups had different rates of certain patterns. Conclusion: Since children in all groups have certain sensory patterns, we cannot associate differences with problematic behaviors. Children participating successfully with all sensory patterns might provide insights for universal design that supports participation of all children.
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Background: Children's sensory processing patterns are linked with their eating habits; children with increased sensory sensitivity are often picky eaters. Research suggests that children's eating habits are also partially influenced by attention to food and beverage advertising. However, the extent to which sensory processing influences children's attention to food cues remains unknown. Therefore, we examined the attentional bias patterns to food vs. non-food logos among children 4-12 years with and without increased oral sensory sensitivity. Design: Children were categorized into high (n = 8) vs. typical (n = 36) oral sensory sensitivity by the Sensory Profile-2. We used eye-tracking to examine orientation and attentional bias to food vs. non-food logos among children with high vs. typical oral sensory sensitivity. We used a mixed model regression to test the influence of oral sensory sensitivity to attentional biases to food vs. non-food logos among children. Results: Results showed that children with high oral sensory sensitivity showed attentional biases toward non-food logos; specifically, children with high oral sensory sensitivity oriented more quickly to non-food logos as compared to food logos (p < 0.05), as well as spent more time looking at non-food logos as compared to food logos (p < 0.05). Findings were in the opposite direction for children with typical oral sensory sensitivity. Conclusion: Sensory sensitivity may be an individual characteristic that serves as a protective mechanism against susceptibility to food and beverage advertising in young children.
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One of the earliest indicators of autism spectrum disorder (ASD) is delay in language and social communication. Despite consensus on the benefits of earlier diagnosis and intervention, our understanding of the language growth of children with ASD during the first years of life remains limited. Therefore, this study compared communication growth patterns of infants and toddlers with ASD to growth benchmarks of a standardized language assessment. We conducted a retrospective analysis of growth on the Early Communication Indicator (ECI) of 23 infants and toddlers who received an ASD diagnosis in the future. At 42 months of age, children with ASD had significantly lower rates of gestures, single words, and multiple words, but significantly higher rates of nonword vocalizations. Children with ASD had significantly slower growth of single and multiple words, but their rate of vocalization growth was significantly greater than benchmark. Although more research is needed with larger samples, because the ECI was designed for practitioners to monitor children's response to intervention over time, these findings show promise for the ECI's use as a progress monitoring measure for young children with ASD. Limitations and the need for future research are discussed.
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Disabled adults and transgender people in the United States face multiple compounding and marginalizing forces that result in unmet healthcare needs. Yet, gender identity among disabled people has not been explored, especially beyond binary categories of gender. Using cross-sectional survey data, we explored the rates of disability types and the odds of unmet healthcare needs among transgender people with disabilities compared to cisgender people with disabilities. The rates of disability type were similar between transgender and cisgender participants with two significant differences. Fewer transgender participants identified physical or mobility disability as their main disability compared to cisgender participants (12.31%/8 vs. 27.68/581, p < 0.01), and more transgender participants selected developmental disability as their main disability compared to cisgender participants (13.85%/9 vs. 3.67%/77, p < 0.001). After adjusting for sociodemographic characteristics, the odds of disabled transgender participants reporting an unmet need were higher for every unmet need except for preventative services.