Expanding the autism evidence base: Strategies to increase participant representation / Maira TAFOLLA in Autism, 30-5 (May 2026)  

Public ISBD [article]  inAutism > 30-5 (May 2026) . - p.1380-1390 Titre : Expanding the autism evidence base: Strategies to increase participant representation Type de document : texte imprimé Auteurs : Maira TAFOLLA, Auteur ; Catherine LORD, Auteur Article en page(s) : p.1380-1390 Langues : Anglais (eng) Mots-clés : autism  bilingual  Latinx  recruitment  research  retention Index. décimale : PER Périodiques Résumé : There is a lack of representation of racially diverse individuals who are multilingual from low-income households in autism research. This calls into question the generalizability of research findings derived from predominantly White, English-speaking samples. In this article, we bring forth an important argument about why we as an autism field should work to expand representation in research samples. We also discuss strategies that can be used to work toward this goal. We detail the recruitment and retention of 94 Spanish–English bilingual Latinx (primarily Mexican and Central American) families from low-income households across a large urban city and its surrounding communities in the United States for an assessment validation study. We use the method of this study as an example of how to engage and include underrepresented populations in autism research, describing the efforts that were implemented to engage families and community-based organizations serving this population. We conclude the report by summarizing culturally sensitive strategies researchers can use to engage populations of different races and ethnicities from low-income households in their own research studies, in hopes of increasing representation in the autism science field and ensuring that research findings are applicable across populations, including those who have been historically underrepresented.Lay Abstract Individuals of different races and identities from low-income households and their families are not adequately represented in research. This makes it difficult to know whether autism research findings apply to traditionally underserved individuals of color, since participants included in studies are usually White and speak English. We use our own study, where we successfully recruited 94 Spanish–English bilingual participants who are from Mexico and Central America but are currently living in the United States in low-income households for an assessment study, as an example to describe the strategies that were helpful to recruit participants with these sociodemographic characteristics. We end the article by discussing strategies that are culturally appropriate for researchers to consider when working with autistic populations of color who are from predominantly low-income households and their families. En ligne : https://dx.doi.org/10.1177/13623613251393505 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=585 [article] Expanding the autism evidence base: Strategies to increase participant representation [texte imprimé] / Maira TAFOLLA, Auteur ; Catherine LORD, Auteur . - p.1380-1390. Langues : Anglais (eng) in Autism > 30-5 (May 2026) . - p.1380-1390 Mots-clés : autism  bilingual  Latinx  recruitment  research  retention Index. décimale : PER Périodiques Résumé : There is a lack of representation of racially diverse individuals who are multilingual from low-income households in autism research. This calls into question the generalizability of research findings derived from predominantly White, English-speaking samples. In this article, we bring forth an important argument about why we as an autism field should work to expand representation in research samples. We also discuss strategies that can be used to work toward this goal. We detail the recruitment and retention of 94 Spanish–English bilingual Latinx (primarily Mexican and Central American) families from low-income households across a large urban city and its surrounding communities in the United States for an assessment validation study. We use the method of this study as an example of how to engage and include underrepresented populations in autism research, describing the efforts that were implemented to engage families and community-based organizations serving this population. We conclude the report by summarizing culturally sensitive strategies researchers can use to engage populations of different races and ethnicities from low-income households in their own research studies, in hopes of increasing representation in the autism science field and ensuring that research findings are applicable across populations, including those who have been historically underrepresented.Lay Abstract Individuals of different races and identities from low-income households and their families are not adequately represented in research. This makes it difficult to know whether autism research findings apply to traditionally underserved individuals of color, since participants included in studies are usually White and speak English. We use our own study, where we successfully recruited 94 Spanish–English bilingual participants who are from Mexico and Central America but are currently living in the United States in low-income households for an assessment study, as an example to describe the strategies that were helpful to recruit participants with these sociodemographic characteristics. We end the article by discussing strategies that are culturally appropriate for researchers to consider when working with autistic populations of color who are from predominantly low-income households and their families. En ligne : https://dx.doi.org/10.1177/13623613251393505 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=585

Perceived negative impact of caregiving demands in parents of individuals with autism spectrum disorders from 9 to 25 years of age / Kourtney CHRISTOPHER in Research in Autism Spectrum Disorders, 106 (August 2023)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 106 (August 2023) . - 102203 Titre : Perceived negative impact of caregiving demands in parents of individuals with autism spectrum disorders from 9 to 25 years of age Type de document : texte imprimé Auteurs : Kourtney CHRISTOPHER, Auteur ; Maira TAFOLLA, Auteur ; Kyle STERRETT, Auteur ; Rebecca ELIAS, Auteur ; Catherine LORD, Auteur Année de publication : 2023 Article en page(s) : 102203 Langues : Anglais (eng) Mots-clés : Perceived negative impact of caregiving  Caregivers  ASD  Adolescence  Adulthood  Longitudinal Index. décimale : PER Périodiques Résumé : Background Caregivers of autistic individuals often report higher levels of perceived negative impact of caregiving. We know very little about the trajectories of caregivers perceived negative impact related to caregiving demands over time in autism. Method The aim of this study was to identify trajectories of perceived negative impact related to parenting of caregivers of autistic individuals and other developmental delays from childhood through emerging adulthood (n = 209). We also explored the factors that predict trajectories of caregiver perceived negative impact including the characteristics of the autistic individuals at age 9 (i.e., social affect, restricted and repetitive behaviors, irritability, hyperactivity, daily living skills and cognitive ability) and caregivers' race, education, social support, and study site. Results Latent class growth modelling yielded three negative impact of caregiving classes: (1) a low impact class that decreased over time (n = 68, 32.54 %), (2) a medium impact class that increased in negative impact during adolescence and decreased in emerging adulthood (n = 98, 46.98 %), and (3) a high impact class that decreased over time (n = 43, 20.57 %). Across all classes, reductions in negative impact of caregiving over time were reported in emerging adulthood, but the high and medium impact groups were still elevated in comparison to the low impact class at the last timepoint. Caregivers of children with less irritability and parent-reported restricted and repetitive behaviors were more likely to belong to the low negative impact group. Caregivers who were African American, had lower educational attainment and those with social support were more likely to belong to the low negative impact group. Conclusions These findings highlight the importance of continued support for caregivers of autistic individuals over time. The influence of race and education on levels of caregiver perceived negative impact of caregiving are discussed further. En ligne : https://doi.org/10.1016/j.rasd.2023.102203 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509 [article] Perceived negative impact of caregiving demands in parents of individuals with autism spectrum disorders from 9 to 25 years of age [texte imprimé] / Kourtney CHRISTOPHER, Auteur ; Maira TAFOLLA, Auteur ; Kyle STERRETT, Auteur ; Rebecca ELIAS, Auteur ; Catherine LORD, Auteur . - 2023 . - 102203. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 106 (August 2023) . - 102203 Mots-clés : Perceived negative impact of caregiving  Caregivers  ASD  Adolescence  Adulthood  Longitudinal Index. décimale : PER Périodiques Résumé : Background Caregivers of autistic individuals often report higher levels of perceived negative impact of caregiving. We know very little about the trajectories of caregivers perceived negative impact related to caregiving demands over time in autism. Method The aim of this study was to identify trajectories of perceived negative impact related to parenting of caregivers of autistic individuals and other developmental delays from childhood through emerging adulthood (n = 209). We also explored the factors that predict trajectories of caregiver perceived negative impact including the characteristics of the autistic individuals at age 9 (i.e., social affect, restricted and repetitive behaviors, irritability, hyperactivity, daily living skills and cognitive ability) and caregivers' race, education, social support, and study site. Results Latent class growth modelling yielded three negative impact of caregiving classes: (1) a low impact class that decreased over time (n = 68, 32.54 %), (2) a medium impact class that increased in negative impact during adolescence and decreased in emerging adulthood (n = 98, 46.98 %), and (3) a high impact class that decreased over time (n = 43, 20.57 %). Across all classes, reductions in negative impact of caregiving over time were reported in emerging adulthood, but the high and medium impact groups were still elevated in comparison to the low impact class at the last timepoint. Caregivers of children with less irritability and parent-reported restricted and repetitive behaviors were more likely to belong to the low negative impact group. Caregivers who were African American, had lower educational attainment and those with social support were more likely to belong to the low negative impact group. Conclusions These findings highlight the importance of continued support for caregivers of autistic individuals over time. The influence of race and education on levels of caregiver perceived negative impact of caregiving are discussed further. En ligne : https://doi.org/10.1016/j.rasd.2023.102203 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509

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