Evaluating More Granular Options for Socio-Demographic Questions in Autism Research / Kristn CURRANS ; Kate WALLIS ; Amanda BENNETT ; Judith S. MILLER in Autism Research, 18-6 (June 2025)  

Public ISBD [article]  inAutism Research > 18-6 (June 2025) . - p.1301-1308 Titre : Evaluating More Granular Options for Socio-Demographic Questions in Autism Research Type de document : Texte imprimé et/ou numérique Auteurs : Kristn CURRANS, Auteur ; Kate WALLIS, Auteur ; Amanda BENNETT, Auteur ; Judith S. MILLER, Auteur Article en page(s) : p.1301-1308 Langues : Anglais (eng) Mots-clés : demographics  inclusive research  surveys Index. décimale : PER Périodiques Résumé : ABSTRACT We evaluated the feasibility and acceptability of adding more detailed choices for race, ethnicity, sex, gender, and socio-economic status for a demographic survey used by families both within and outside a large learning health network, the Autism Care Network (ACNet). We updated our demographic survey using an iterative approach, incorporating qualitative and quantitative feedback from interested parties across the US and Canada. Pilot testing of the revised survey was conducted with families with and without autism served by two large academic pediatric tertiary care centers. Through purposive sampling, recruitment was enriched for families from ethnic, racial, or gender minority backgrounds. The updated demographic survey increased the number of response options for race and ethnicity, sex, gender, and language. 85 families within the ACNet and 242 families outside the ACNet provided feasibility and acceptability data. 41% of respondents were from nonWhite or multiple race groups. 99% of respondents rated the updated form same or better than the original. 91% of respondents rated the updated form as acceptable, while 97% rated the survey as feasible. Despite concerns about the burden on respondents, we found high rates of feasibility and acceptability of more granular response options in demographic surveys. Researchers can adapt this approach to make their own more granular demographic forms focused on the specific variables relevant to their study and local contexts. More granular demographic data can identify strengths and gaps in representation that could impact a study's generalizability. En ligne : https://doi.org/10.1002/aur.70041 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558 [article] Evaluating More Granular Options for Socio-Demographic Questions in Autism Research [Texte imprimé et/ou numérique] / Kristn CURRANS, Auteur ; Kate WALLIS, Auteur ; Amanda BENNETT, Auteur ; Judith S. MILLER, Auteur . - p.1301-1308. Langues : Anglais (eng) in Autism Research > 18-6 (June 2025) . - p.1301-1308 Mots-clés : demographics  inclusive research  surveys Index. décimale : PER Périodiques Résumé : ABSTRACT We evaluated the feasibility and acceptability of adding more detailed choices for race, ethnicity, sex, gender, and socio-economic status for a demographic survey used by families both within and outside a large learning health network, the Autism Care Network (ACNet). We updated our demographic survey using an iterative approach, incorporating qualitative and quantitative feedback from interested parties across the US and Canada. Pilot testing of the revised survey was conducted with families with and without autism served by two large academic pediatric tertiary care centers. Through purposive sampling, recruitment was enriched for families from ethnic, racial, or gender minority backgrounds. The updated demographic survey increased the number of response options for race and ethnicity, sex, gender, and language. 85 families within the ACNet and 242 families outside the ACNet provided feasibility and acceptability data. 41% of respondents were from nonWhite or multiple race groups. 99% of respondents rated the updated form same or better than the original. 91% of respondents rated the updated form as acceptable, while 97% rated the survey as feasible. Despite concerns about the burden on respondents, we found high rates of feasibility and acceptability of more granular response options in demographic surveys. Researchers can adapt this approach to make their own more granular demographic forms focused on the specific variables relevant to their study and local contexts. More granular demographic data can identify strengths and gaps in representation that could impact a study's generalizability. En ligne : https://doi.org/10.1002/aur.70041 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558

A natural history study of medical cannabis consumption in pediatric autism in the United States / Mary Ann DILIBERTO in Research in Autism Spectrum Disorders, 96 (August 2022)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 96 (August 2022) . - 101994 Titre : A natural history study of medical cannabis consumption in pediatric autism in the United States Type de document : Texte imprimé et/ou numérique Auteurs : Mary Ann DILIBERTO, Auteur ; Athena F. ZUPPA, Auteur ; Amanda CORNETTA, Auteur ; Walter FAIG, Auteur ; Tryce SCULLY, Auteur ; Amanda BENNETT, Auteur ; Meghan THOMAS, Auteur ; Elizabeth WARD, Auteur ; Stephen BARR, Auteur ; Benjamin E. YERYS, Auteur Article en page(s) : 101994 Langues : Anglais (eng) Mots-clés : Marijuana  Treatment  Alternative medicine  Children  Youth Index. décimale : PER Périodiques Résumé : Background Autism spectrum disorder is specifically approved for medical cannabis consumption in 20 U.S. states, the District of Columbia, and the Territory of Puerto Rico. Despite increased access, there is limited knowledge about who consumes medical cannabis, what they consume, and perceived effectiveness. We addressed these gaps by conducting a natural history study of medical cannabis consumption. Method Children and their families engaged with a large pediatric care system were recruited to complete a telephonic study regarding their medical cannabis consumption. All children had to be consuming approved medical cannabis products issued from a state that had legalized medical cannabis for the treatment of ASD or related behaviors (irritability, hyperactivity, anxiety) (N = 89). Results The sample?s ?level of support? and gender-ratio reflected the general autism population (~33 % requiring ?Very Substantial Support? and ~80 % male). The most common treatment targets were ASD behaviors (repetitive behaviors) and irritability. More children consumed compounds with high cannabidiol (CBD) and low or no tetrahydrocannabinol (THC). While dose did not affect overall perceived effectiveness, compounds with high-levels of CBD and low-levels of THC (CBD-dominant) were perceived as more effective than CBD-only. Conclusions This ?real world? study revealed that medical cannabis is being used to treat a wide range of behaviors. Our study also suggests that children consume CBD-rich products, and the effectiveness of CBD-dosing may be tied to the inclusion of THC in the compound. Future research should evaluate optimal dosing with a particular focus on the CBD-to-THC ratio. En ligne : https://doi.org/10.1016/j.rasd.2022.101994 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=480 [article] A natural history study of medical cannabis consumption in pediatric autism in the United States [Texte imprimé et/ou numérique] / Mary Ann DILIBERTO, Auteur ; Athena F. ZUPPA, Auteur ; Amanda CORNETTA, Auteur ; Walter FAIG, Auteur ; Tryce SCULLY, Auteur ; Amanda BENNETT, Auteur ; Meghan THOMAS, Auteur ; Elizabeth WARD, Auteur ; Stephen BARR, Auteur ; Benjamin E. YERYS, Auteur . - 101994. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 96 (August 2022) . - 101994 Mots-clés : Marijuana  Treatment  Alternative medicine  Children  Youth Index. décimale : PER Périodiques Résumé : Background Autism spectrum disorder is specifically approved for medical cannabis consumption in 20 U.S. states, the District of Columbia, and the Territory of Puerto Rico. Despite increased access, there is limited knowledge about who consumes medical cannabis, what they consume, and perceived effectiveness. We addressed these gaps by conducting a natural history study of medical cannabis consumption. Method Children and their families engaged with a large pediatric care system were recruited to complete a telephonic study regarding their medical cannabis consumption. All children had to be consuming approved medical cannabis products issued from a state that had legalized medical cannabis for the treatment of ASD or related behaviors (irritability, hyperactivity, anxiety) (N = 89). Results The sample?s ?level of support? and gender-ratio reflected the general autism population (~33 % requiring ?Very Substantial Support? and ~80 % male). The most common treatment targets were ASD behaviors (repetitive behaviors) and irritability. More children consumed compounds with high cannabidiol (CBD) and low or no tetrahydrocannabinol (THC). While dose did not affect overall perceived effectiveness, compounds with high-levels of CBD and low-levels of THC (CBD-dominant) were perceived as more effective than CBD-only. Conclusions This ?real world? study revealed that medical cannabis is being used to treat a wide range of behaviors. Our study also suggests that children consume CBD-rich products, and the effectiveness of CBD-dosing may be tied to the inclusion of THC in the compound. Future research should evaluate optimal dosing with a particular focus on the CBD-to-THC ratio. En ligne : https://doi.org/10.1016/j.rasd.2022.101994 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=480

A Practice Pathway for the Treatment of Night Wakings in Children with Autism Spectrum Disorder / Justin G. FARMER ; Heidi V. CONNOLLY ; Virginia D. ALLHUSEN ; Amanda BENNETT ; Daniel L. COURY ; Janet LAM ; Ann M. NEUMEYER ; Kristin SOHL ; Manisha WITMANS ; Beth A. MALOW ; Committee AUTISM TREATMENT NETWORK/AUTISM INTERVENTION RESEARCH NETWORK ON PHYSICAL HEALTH SLEEP in Journal of Autism and Developmental Disorders, 54-8 (August 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-8 (August 2024) . - p.2926-2945 Titre : A Practice Pathway for the Treatment of Night Wakings in Children with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Justin G. FARMER, Auteur ; Heidi V. CONNOLLY, Auteur ; Virginia D. ALLHUSEN, Auteur ; Amanda BENNETT, Auteur ; Daniel L. COURY, Auteur ; Janet LAM, Auteur ; Ann M. NEUMEYER, Auteur ; Kristin SOHL, Auteur ; Manisha WITMANS, Auteur ; Beth A. MALOW, Auteur ; Committee AUTISM TREATMENT NETWORK/AUTISM INTERVENTION RESEARCH NETWORK ON PHYSICAL HEALTH SLEEP, Auteur Article en page(s) : p.2926-2945 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorder (ASD) report high rates of sleep problems. In 2012, the Autism Treatment Network/ Autism Intervention Research Network on Physical Health (ATN/AIR-P) Sleep Committee developed a pathway to address these concerns. Since its publication, ATN/AIR-P clinicians and parents have identified night wakings as a refractory problem unaddressed by the pathway. We reviewed the existing literature and identified 76 scholarly articles that provided data on night waking in children with ASD. Based on the available literature, we propose an updated practice pathway to identify and treat night wakings in children with ASD. En ligne : https://doi.org/10.1007/s10803-023-06026-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534 [article] A Practice Pathway for the Treatment of Night Wakings in Children with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Justin G. FARMER, Auteur ; Heidi V. CONNOLLY, Auteur ; Virginia D. ALLHUSEN, Auteur ; Amanda BENNETT, Auteur ; Daniel L. COURY, Auteur ; Janet LAM, Auteur ; Ann M. NEUMEYER, Auteur ; Kristin SOHL, Auteur ; Manisha WITMANS, Auteur ; Beth A. MALOW, Auteur ; Committee AUTISM TREATMENT NETWORK/AUTISM INTERVENTION RESEARCH NETWORK ON PHYSICAL HEALTH SLEEP, Auteur . - p.2926-2945. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-8 (August 2024) . - p.2926-2945 Index. décimale : PER Périodiques Résumé : Children with autism spectrum disorder (ASD) report high rates of sleep problems. In 2012, the Autism Treatment Network/ Autism Intervention Research Network on Physical Health (ATN/AIR-P) Sleep Committee developed a pathway to address these concerns. Since its publication, ATN/AIR-P clinicians and parents have identified night wakings as a refractory problem unaddressed by the pathway. We reviewed the existing literature and identified 76 scholarly articles that provided data on night waking in children with ASD. Based on the available literature, we propose an updated practice pathway to identify and treat night wakings in children with ASD. En ligne : https://doi.org/10.1007/s10803-023-06026-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534

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