Discrimination and Harassment Experiences of Autistic College Students and Their Neurotypical Peers: Risk and Protective Factors / Lauren BACZEWSKI ; Maria PIZZANO ; Connie KASARI ; Alexandra STURM in Journal of Autism and Developmental Disorders, 53-12 (December 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-12 (December 2023) . - p.4521-4534 Titre : Discrimination and Harassment Experiences of Autistic College Students and Their Neurotypical Peers: Risk and Protective Factors Type de document : texte imprimé Auteurs : Lauren BACZEWSKI, Auteur ; Maria PIZZANO, Auteur ; Connie KASARI, Auteur ; Alexandra STURM, Auteur Article en page(s) : p.4521-4534 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : This study examines autistic and non-autistic college students' experiences of discrimination and harassment and identifies protective and risk factors. A nationwide survey was used to match autistic students (N=290) and non-autistic students (N=290) on co-occurring diagnoses and demographic characteristics. Multiple regression and interaction analysis revealed that faculty support was protective against discrimination and harassment regardless of autism status. Habits of mind was particularly protective for autistic students against harassment. Any student who engaged in school-facilitated events was more likely to experience discrimination and harassment, but the risk was heightened for autistic students. Findings highlight the importance of faculty support in fostering positive interpersonal experiences on campus, and demonstrate the need to address deeper college campus issues with respect to neurodiversity. En ligne : https://doi.org/10.1007/s10803-022-05729-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=515 [article] Discrimination and Harassment Experiences of Autistic College Students and Their Neurotypical Peers: Risk and Protective Factors [texte imprimé] / Lauren BACZEWSKI, Auteur ; Maria PIZZANO, Auteur ; Connie KASARI, Auteur ; Alexandra STURM, Auteur . - p.4521-4534. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-12 (December 2023) . - p.4521-4534 Index. décimale : PER Périodiques Résumé : This study examines autistic and non-autistic college students' experiences of discrimination and harassment and identifies protective and risk factors. A nationwide survey was used to match autistic students (N=290) and non-autistic students (N=290) on co-occurring diagnoses and demographic characteristics. Multiple regression and interaction analysis revealed that faculty support was protective against discrimination and harassment regardless of autism status. Habits of mind was particularly protective for autistic students against harassment. Any student who engaged in school-facilitated events was more likely to experience discrimination and harassment, but the risk was heightened for autistic students. Findings highlight the importance of faculty support in fostering positive interpersonal experiences on campus, and demonstrate the need to address deeper college campus issues with respect to neurodiversity. En ligne : https://doi.org/10.1007/s10803-022-05729-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=515

Parenting stress in caregiver-mediated interventions for toddlers with autism: An application of quantile regression mixed models / Andrew SCHLINK in Autism Research, 15-2 (February 2022)  

Public ISBD [article]  inAutism Research > 15-2 (February 2022) . - p.353-365 Titre : Parenting stress in caregiver-mediated interventions for toddlers with autism: An application of quantile regression mixed models Type de document : texte imprimé Auteurs : Andrew SCHLINK, Auteur ; Justin WILLIAMS, Auteur ; Maria PIZZANO, Auteur ; Amanda GULSRUD, Auteur ; Connie KASARI, Auteur Article en page(s) : p.353-365 Langues : Anglais (eng) Mots-clés : Jasper  autism spectrum disorder  caregiver-mediated interventions  linear quantile mixed models  parenting stress  toddlers Index. décimale : PER Périodiques Résumé : Traditional longitudinal modeling approaches require normally distributed data and do not account for sample heterogeneity. Parenting stress, in particular, can be difficult to model across time without transforming the data as it is usually high for caregivers of children with ASD. This study used novel linear quantile mixed models (LQMMs) to model non-normal parent stress scores across two caregiver-mediated interventions involving toddlers with ASD. The sample included 86 caregiver-child dyads who were randomized to either a parent-only psychoeducational intervention or hands-on parent training in a naturalistic developmental intervention. Child and parent-related domains of the Parenting Stress Index (PSI) were the primary outcomes in this study. The PSI was collected at entry, 10-week exit, 3-month follow-up, and 6-month follow-up periods. Separate LQMMs were used to model five specific quantiles ( Ï„ = 0.1, 0.25, 0.5, 0.75, and 0.9) of the two PSI domains across the complete intervention timeline. These five quantiles effectively modeled the entire conditional distribution of parenting stress scores. The LQMMs indicated that child-related parenting stress decreased across all quantiles within both interventions, with no difference in the rate of parenting stress change between the intervention groups. For parent-related parenting stress, the effect of intervention depended on the group's stress level; some parents increased their perceived stress within the hands-on intervention at the 3-month follow-up. Overall, this study demonstrated that the use of LQMMs yielded additional information, beyond traditional longitudinal models, regarding the relationship between parenting stress within two caregiver-mediated intervention protocols. This study also discussed the methodological contributions and potential future applications of LQMMs. LAY SUMMARY: This study used a newer longitudinal modeling technique to examine how parenting stress changed across two caregiver-mediated interventions for toddlers with ASD. Results showed that certain parents in the JASPER condition might require additional support as they exit the study and enter into their first follow-up period. It was also determined that this new modeling technique could be a valuable tool to analyze highly variable data often present in ASD intervention studies. En ligne : http://dx.doi.org/10.1002/aur.2637 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450 [article] Parenting stress in caregiver-mediated interventions for toddlers with autism: An application of quantile regression mixed models [texte imprimé] / Andrew SCHLINK, Auteur ; Justin WILLIAMS, Auteur ; Maria PIZZANO, Auteur ; Amanda GULSRUD, Auteur ; Connie KASARI, Auteur . - p.353-365. Langues : Anglais (eng) in Autism Research > 15-2 (February 2022) . - p.353-365 Mots-clés : Jasper  autism spectrum disorder  caregiver-mediated interventions  linear quantile mixed models  parenting stress  toddlers Index. décimale : PER Périodiques Résumé : Traditional longitudinal modeling approaches require normally distributed data and do not account for sample heterogeneity. Parenting stress, in particular, can be difficult to model across time without transforming the data as it is usually high for caregivers of children with ASD. This study used novel linear quantile mixed models (LQMMs) to model non-normal parent stress scores across two caregiver-mediated interventions involving toddlers with ASD. The sample included 86 caregiver-child dyads who were randomized to either a parent-only psychoeducational intervention or hands-on parent training in a naturalistic developmental intervention. Child and parent-related domains of the Parenting Stress Index (PSI) were the primary outcomes in this study. The PSI was collected at entry, 10-week exit, 3-month follow-up, and 6-month follow-up periods. Separate LQMMs were used to model five specific quantiles ( Ï„ = 0.1, 0.25, 0.5, 0.75, and 0.9) of the two PSI domains across the complete intervention timeline. These five quantiles effectively modeled the entire conditional distribution of parenting stress scores. The LQMMs indicated that child-related parenting stress decreased across all quantiles within both interventions, with no difference in the rate of parenting stress change between the intervention groups. For parent-related parenting stress, the effect of intervention depended on the group's stress level; some parents increased their perceived stress within the hands-on intervention at the 3-month follow-up. Overall, this study demonstrated that the use of LQMMs yielded additional information, beyond traditional longitudinal models, regarding the relationship between parenting stress within two caregiver-mediated intervention protocols. This study also discussed the methodological contributions and potential future applications of LQMMs. LAY SUMMARY: This study used a newer longitudinal modeling technique to examine how parenting stress changed across two caregiver-mediated interventions for toddlers with ASD. Results showed that certain parents in the JASPER condition might require additional support as they exit the study and enter into their first follow-up period. It was also determined that this new modeling technique could be a valuable tool to analyze highly variable data often present in ASD intervention studies. En ligne : http://dx.doi.org/10.1002/aur.2637 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=450

Profiles of minimally verbal autistic children: Illuminating the neglected end of the spectrum / Maria PIZZANO in Autism Research, 17-5 (May 2024)  

Public ISBD [article]  inAutism Research > 17-5 (May 2024) Titre : Profiles of minimally verbal autistic children: Illuminating the neglected end of the spectrum Type de document : texte imprimé Auteurs : Maria PIZZANO, Auteur ; Stephanie SHIRE, Auteur ; Wendy SHIH, Auteur ; Lynne LEVATO, Auteur ; Rebecca LANDA, Auteur ; Catherine LORD, Auteur ; Tristram SMITH, Auteur ; Connie KASARI, Auteur Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Heterogeneity among individuals on the autism spectrum is widely acknowledged as a barrier to develop effective interventions. Overcoming this challenge requires characterization of individual differences, especially for children that are minimally verbal and often excluded from research studies. Most studies that describe autistic subgroups identify a single minimally verbal verbal group based on a single identifying measure (e.g., ADOS module one or single item indicating absence of phrase speech). Determining personalized courses of intervention requires a more detailed understanding since a single intervention will not be effective for all who are minimally verbal. The present study identified comprehensive profiles of cognitive, language, and social communication skills within a large, diverse, group of minimally verbal children with autism. The analysis combined baseline data from two studies to yield a sample of 344 participants, who were 3 to 8 years old at the time of study onset, with 60% who identified as having a race/ethnicity other than White. Via latent profile analysis (LPA), a three-group model was identified as best fit to the data. Profile identification was dependent on a participant's combination of cognitive, expressive, and social communication characteristics, rather than a single domain. One group (n = 206) had global delays, while the other two groups (n = 95 and n = 43) had variable strengths in cognition and communication. Findings suggest that low-frequency/minimally verbal communicators with autism have heterogeneous characteristics that can be systematically organized. En ligne : https://doi.org/10.1002/aur.3151 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529 [article] Profiles of minimally verbal autistic children: Illuminating the neglected end of the spectrum [texte imprimé] / Maria PIZZANO, Auteur ; Stephanie SHIRE, Auteur ; Wendy SHIH, Auteur ; Lynne LEVATO, Auteur ; Rebecca LANDA, Auteur ; Catherine LORD, Auteur ; Tristram SMITH, Auteur ; Connie KASARI, Auteur. Langues : Anglais (eng) in Autism Research > 17-5 (May 2024) Index. décimale : PER Périodiques Résumé : Abstract Heterogeneity among individuals on the autism spectrum is widely acknowledged as a barrier to develop effective interventions. Overcoming this challenge requires characterization of individual differences, especially for children that are minimally verbal and often excluded from research studies. Most studies that describe autistic subgroups identify a single minimally verbal verbal group based on a single identifying measure (e.g., ADOS module one or single item indicating absence of phrase speech). Determining personalized courses of intervention requires a more detailed understanding since a single intervention will not be effective for all who are minimally verbal. The present study identified comprehensive profiles of cognitive, language, and social communication skills within a large, diverse, group of minimally verbal children with autism. The analysis combined baseline data from two studies to yield a sample of 344 participants, who were 3 to 8 years old at the time of study onset, with 60% who identified as having a race/ethnicity other than White. Via latent profile analysis (LPA), a three-group model was identified as best fit to the data. Profile identification was dependent on a participant's combination of cognitive, expressive, and social communication characteristics, rather than a single domain. One group (n = 206) had global delays, while the other two groups (n = 95 and n = 43) had variable strengths in cognition and communication. Findings suggest that low-frequency/minimally verbal communicators with autism have heterogeneous characteristics that can be systematically organized. En ligne : https://doi.org/10.1002/aur.3151 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=529

A telehealth approach to improving clinical trial access for infants with tuberous sclerosis complex / Carly HYDE in Journal of Neurodevelopmental Disorders, 12 (2020)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 12 (2020) Titre : A telehealth approach to improving clinical trial access for infants with tuberous sclerosis complex Type de document : texte imprimé Auteurs : Carly HYDE, Auteur ; Maria PIZZANO, Auteur ; Nicole M. MCDONALD, Auteur ; Charles A. 3rd NELSON, Auteur ; Connie KASARI, Auteur ; Elizabeth A. THIELE, Auteur ; Shafali S. JESTE, Auteur Langues : Anglais (eng) Mots-clés : Adult  Autism Spectrum Disorder/complications  Child, Preschool  Clinical Trials as Topic  Female  Humans  Infant  Male  Parents  Patient Selection  Telemedicine/methods  Tuberous Sclerosis/psychology  Videoconferencing  Autism spectrum disorder  Behavioral intervention  Clinical trial recruitment  Early intervention  Remote delivery  Telehealth  Tuberous sclerosis complex Index. décimale : PER Périodiques Résumé : BACKGROUND: Research in rare genetic syndromes associated with ASD is often hampered by the wide geographic distribution of families and the presence of medical comorbidities, such as epilepsy, that may preclude travel to clinical sites. These challenges can limit the sample size and generalizability of the cohorts included in both natural history studies and clinical trials. Tuberous sclerosis complex (TSC) is a rare genetic syndrome that confers an elevated risk for autism spectrum disorder (ASD), with social communication delays identified in this population as early as 12 months of age. Early identification of risk necessitates parallel testing of early intervention, prompting the first randomized controlled clinical trial of behavioral intervention for infants with TSC (NCT03422367). However, considerable early recruitment challenges have mandated the systematic identification of enrollment barriers followed by modification of the study design to address these barriers. METHODS: Caregivers were interviewed regarding barriers to enrollment (phase 1). Adaptations to the intervention were made to address these barriers (phase 2). Outcomes based on this modification to the study design were defined by enrollment rate and participant demographics. RESULTS: Qualitative reports from caregivers indicated that distance and time were the primary barriers to clinical trial enrollment. The intervention was then modified to a remote model, with at-home, parent-delivered intervention, and weekly video conferencing with interventionists at the study sites. Enrollment increased 10-fold (from 3 to 30 participants) within 1 year and included a more diverse and clinically representative cohort of infants. CONCLUSION: The design and implementation of more scalable methods to disseminate research remotely can substantially improve access to clinical trials in rare neurodevelopmental disorders. The lessons learned from this trial can serve as a model for future studies not only in rare conditions, but in other populations that lack adequate access, such as families with limited financial or clinical resources. Continued efforts will further refine delivery methods to enhance efficiency and ease of these delivery systems for families. En ligne : https://dx.doi.org/10.1186/s11689-019-9302-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=573 [article] A telehealth approach to improving clinical trial access for infants with tuberous sclerosis complex [texte imprimé] / Carly HYDE, Auteur ; Maria PIZZANO, Auteur ; Nicole M. MCDONALD, Auteur ; Charles A. 3rd NELSON, Auteur ; Connie KASARI, Auteur ; Elizabeth A. THIELE, Auteur ; Shafali S. JESTE, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 12 (2020) Mots-clés : Adult  Autism Spectrum Disorder/complications  Child, Preschool  Clinical Trials as Topic  Female  Humans  Infant  Male  Parents  Patient Selection  Telemedicine/methods  Tuberous Sclerosis/psychology  Videoconferencing  Autism spectrum disorder  Behavioral intervention  Clinical trial recruitment  Early intervention  Remote delivery  Telehealth  Tuberous sclerosis complex Index. décimale : PER Périodiques Résumé : BACKGROUND: Research in rare genetic syndromes associated with ASD is often hampered by the wide geographic distribution of families and the presence of medical comorbidities, such as epilepsy, that may preclude travel to clinical sites. These challenges can limit the sample size and generalizability of the cohorts included in both natural history studies and clinical trials. Tuberous sclerosis complex (TSC) is a rare genetic syndrome that confers an elevated risk for autism spectrum disorder (ASD), with social communication delays identified in this population as early as 12 months of age. Early identification of risk necessitates parallel testing of early intervention, prompting the first randomized controlled clinical trial of behavioral intervention for infants with TSC (NCT03422367). However, considerable early recruitment challenges have mandated the systematic identification of enrollment barriers followed by modification of the study design to address these barriers. METHODS: Caregivers were interviewed regarding barriers to enrollment (phase 1). Adaptations to the intervention were made to address these barriers (phase 2). Outcomes based on this modification to the study design were defined by enrollment rate and participant demographics. RESULTS: Qualitative reports from caregivers indicated that distance and time were the primary barriers to clinical trial enrollment. The intervention was then modified to a remote model, with at-home, parent-delivered intervention, and weekly video conferencing with interventionists at the study sites. Enrollment increased 10-fold (from 3 to 30 participants) within 1 year and included a more diverse and clinically representative cohort of infants. CONCLUSION: The design and implementation of more scalable methods to disseminate research remotely can substantially improve access to clinical trials in rare neurodevelopmental disorders. The lessons learned from this trial can serve as a model for future studies not only in rare conditions, but in other populations that lack adequate access, such as families with limited financial or clinical resources. Continued efforts will further refine delivery methods to enhance efficiency and ease of these delivery systems for families. En ligne : https://dx.doi.org/10.1186/s11689-019-9302-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=573

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