Appropriateness, Acceptability, and Feasibility of a Neurodiversity-Based Self-determination Program for Autistic Adults / T. A. Meridian MCDONALD in Journal of Autism and Developmental Disorders, 53-8 (August 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-8 (August 2023) . - p.2933-2953 Titre : Appropriateness, Acceptability, and Feasibility of a Neurodiversity-Based Self-determination Program for Autistic Adults Type de document : Texte imprimé et/ou numérique Auteurs : T. A. Meridian MCDONALD, Auteur ; Salima LALANI, Auteur ; Ivy CHEN, Auteur ; Claire M. COTTON, Auteur ; Lydia MACDONALD, Auteur ; Lana J. BOURSOULIAN, Auteur ; Jiahao WANG, Auteur ; Beth A. MALOW, Auteur Article en page(s) : p.2933-2953 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Published self-determination programs do not adequately address the needs of autistic adults. We designed a multi-component self-determination program, grounded in the neurodiversity paradigm, to help autistic adults achieve goals to improve their quality of life. The first phase involved 5 days of psychoeducation, practice, and social events; the second phase included 3 months of telecoaching; and the third phase included follow-up. Thirty-four university students coached 31 autistic adults on three evolving goals. On average, participants completed one goal per week. Most participants were satisfied with the program. We found that the program was appropriate, acceptable, and feasible. This program is a promising approach to helping autistic adults gain self-determination skills and improve their quality of life. En ligne : https://doi.org/10.1007/s10803-022-05598-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=508 [article] Appropriateness, Acceptability, and Feasibility of a Neurodiversity-Based Self-determination Program for Autistic Adults [Texte imprimé et/ou numérique] / T. A. Meridian MCDONALD, Auteur ; Salima LALANI, Auteur ; Ivy CHEN, Auteur ; Claire M. COTTON, Auteur ; Lydia MACDONALD, Auteur ; Lana J. BOURSOULIAN, Auteur ; Jiahao WANG, Auteur ; Beth A. MALOW, Auteur . - p.2933-2953. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-8 (August 2023) . - p.2933-2953 Index. décimale : PER Périodiques Résumé : Published self-determination programs do not adequately address the needs of autistic adults. We designed a multi-component self-determination program, grounded in the neurodiversity paradigm, to help autistic adults achieve goals to improve their quality of life. The first phase involved 5 days of psychoeducation, practice, and social events; the second phase included 3 months of telecoaching; and the third phase included follow-up. Thirty-four university students coached 31 autistic adults on three evolving goals. On average, participants completed one goal per week. Most participants were satisfied with the program. We found that the program was appropriate, acceptable, and feasible. This program is a promising approach to helping autistic adults gain self-determination skills and improve their quality of life. En ligne : https://doi.org/10.1007/s10803-022-05598-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=508

Behaviour, cognition, and autism symptoms and their relationship with sleep problem severity in young children with autism spectrum disorder / Stephanie ROUSSIS in Research in Autism Spectrum Disorders, 83 (May 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 83 (May 2021) . - 101743 Titre : Behaviour, cognition, and autism symptoms and their relationship with sleep problem severity in young children with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Stephanie ROUSSIS, Auteur ; Amanda L. RICHDALE, Auteur ; Terry KATZ, Auteur ; Beth A. MALOW, Auteur ; Josephine BARBARO, Auteur ; Nancy SADKA, Auteur Article en page(s) : 101743 Langues : Anglais (eng) Mots-clés : Sleep problem  Behaviour  Autism  Young children Index. décimale : PER Périodiques Résumé : Background In autism, poor sleep begins in early childhood, varies in severity and is associated with behavioural difficulties. We examined relationships between sleep and behaviour in young children with autism and no, mild/typical or severe/atypical sleep problems to determine behavioural profiles that may differentiate sleep problem severity. Method Parents of children with autism aged 2- to 5-years reported on their child’s sleep behaviour (CSHQ), including additional written descriptions of sleep behaviours. Children were then classified as good sleepers or as having mild/typical or severe/atypical sleep problems using National Sleep Foundation guidelines and current sleep literature. The three sleep groups were compared on autistic severity (ADOS), cognition (Mullen Scales of Early Leaning) and behaviour (BASC-3). Results Parents of 46 children aged 24- to 71-months participated. The severe/atypical sleep group were more likely to have multiple severe sleep difficulties. The sleep groups did not differ on autism severity or cognition. The BASC-3 withdrawal subscale differentiated severe problem sleepers from the other groups, while BASC-3 inattention differentiated problem sleepers from good sleepers. The severe/atypical sleep problem group also had more overall behaviour problems than good sleepers Conclusions Social withdrawal and multiple, severe sleep difficulties may underlie difficulties in treating poor sleep in some autistic children, suggesting that an individualised approach to treatment is needed to address severe sleep concerns. Early detection and intervention for poor sleep may reduce or prevent significant sleep and behavioural concerns continuing into later childhood. Sleep interventions that include targeting attention and withdrawal behaviours may assist in in this regard. En ligne : https://doi.org/10.1016/j.rasd.2021.101743 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=446 [article] Behaviour, cognition, and autism symptoms and their relationship with sleep problem severity in young children with autism spectrum disorder [Texte imprimé et/ou numérique] / Stephanie ROUSSIS, Auteur ; Amanda L. RICHDALE, Auteur ; Terry KATZ, Auteur ; Beth A. MALOW, Auteur ; Josephine BARBARO, Auteur ; Nancy SADKA, Auteur . - 101743. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 83 (May 2021) . - 101743 Mots-clés : Sleep problem  Behaviour  Autism  Young children Index. décimale : PER Périodiques Résumé : Background In autism, poor sleep begins in early childhood, varies in severity and is associated with behavioural difficulties. We examined relationships between sleep and behaviour in young children with autism and no, mild/typical or severe/atypical sleep problems to determine behavioural profiles that may differentiate sleep problem severity. Method Parents of children with autism aged 2- to 5-years reported on their child’s sleep behaviour (CSHQ), including additional written descriptions of sleep behaviours. Children were then classified as good sleepers or as having mild/typical or severe/atypical sleep problems using National Sleep Foundation guidelines and current sleep literature. The three sleep groups were compared on autistic severity (ADOS), cognition (Mullen Scales of Early Leaning) and behaviour (BASC-3). Results Parents of 46 children aged 24- to 71-months participated. The severe/atypical sleep group were more likely to have multiple severe sleep difficulties. The sleep groups did not differ on autism severity or cognition. The BASC-3 withdrawal subscale differentiated severe problem sleepers from the other groups, while BASC-3 inattention differentiated problem sleepers from good sleepers. The severe/atypical sleep problem group also had more overall behaviour problems than good sleepers Conclusions Social withdrawal and multiple, severe sleep difficulties may underlie difficulties in treating poor sleep in some autistic children, suggesting that an individualised approach to treatment is needed to address severe sleep concerns. Early detection and intervention for poor sleep may reduce or prevent significant sleep and behavioural concerns continuing into later childhood. Sleep interventions that include targeting attention and withdrawal behaviours may assist in in this regard. En ligne : https://doi.org/10.1016/j.rasd.2021.101743 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=446

Brief report: Measures of effectiveness for single-question sleep problem screeners in children with autism spectrum disorder / Alison R. MARVIN in Research in Autism Spectrum Disorders, 80 (February 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 80 (February 2021) . - p.101699 Titre : Brief report: Measures of effectiveness for single-question sleep problem screeners in children with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Alison R. MARVIN, Auteur ; Daniel L. COURY, Auteur ; Beth A. MALOW, Auteur ; J. Kiely LAW, Auteur ; Amanda E. BENNETT, Auteur Article en page(s) : p.101699 Langues : Anglais (eng) Mots-clés : Autism  Sleep  Composite Sleep Disturbance Index  Screening  Primary care  Psychometrics Index. décimale : PER Périodiques Résumé : Background Although screening for sleep problems in children with ASD is recommended, primary care providers generally ask parents a single, high-level screening question about their child’s sleep. Can this capture whether a child has severe sleep problems? Method Parents of children with ASD ages 3–17 years recruited from a validated and verified US-based autism research registry completed an online survey on co-occurring conditions, including “degree of sleep problems”. The Composite Sleep Disturbance Index (CSDI) and its question on “parent satisfaction with current sleep pattern” were also incorporated. Results 610 parent/child dyads were analyzed. 377 (62%) children had severe sleep problems per CSDI; 215 (57%) were parent-rated with Moderate/Severe sleep problems. 219 (93%) of 233 children without a severe sleep problem on CSDI were parent-rated as having None/Mild sleep problems. 94% with Moderate/Severe sleep problems per parents had severe sleep problems per CSDI. However, 15% of those whose parents rated as None had a severe sleep problem. 200 (33%) children had a Mild sleep problem rating; of these, 134 (67%) had CSDI severe sleep problem and 66 (33%) did not. Conclusions A single question about sleep was good at classifying severe vs. non-severe sleep problems in children with ASD, especially with extreme responses. However, a single question was poor at classifying intermediate/non-extreme responses, and a significant number of children with severe sleep problems were missed. Screening with a short, validated questionnaire or asking more probing questions would assist in diagnosing most children with sleep problems. Parents may benefit from sleep education. En ligne : https://doi.org/10.1016/j.rasd.2020.101699 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438 [article] Brief report: Measures of effectiveness for single-question sleep problem screeners in children with autism spectrum disorder [Texte imprimé et/ou numérique] / Alison R. MARVIN, Auteur ; Daniel L. COURY, Auteur ; Beth A. MALOW, Auteur ; J. Kiely LAW, Auteur ; Amanda E. BENNETT, Auteur . - p.101699. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 80 (February 2021) . - p.101699 Mots-clés : Autism  Sleep  Composite Sleep Disturbance Index  Screening  Primary care  Psychometrics Index. décimale : PER Périodiques Résumé : Background Although screening for sleep problems in children with ASD is recommended, primary care providers generally ask parents a single, high-level screening question about their child’s sleep. Can this capture whether a child has severe sleep problems? Method Parents of children with ASD ages 3–17 years recruited from a validated and verified US-based autism research registry completed an online survey on co-occurring conditions, including “degree of sleep problems”. The Composite Sleep Disturbance Index (CSDI) and its question on “parent satisfaction with current sleep pattern” were also incorporated. Results 610 parent/child dyads were analyzed. 377 (62%) children had severe sleep problems per CSDI; 215 (57%) were parent-rated with Moderate/Severe sleep problems. 219 (93%) of 233 children without a severe sleep problem on CSDI were parent-rated as having None/Mild sleep problems. 94% with Moderate/Severe sleep problems per parents had severe sleep problems per CSDI. However, 15% of those whose parents rated as None had a severe sleep problem. 200 (33%) children had a Mild sleep problem rating; of these, 134 (67%) had CSDI severe sleep problem and 66 (33%) did not. Conclusions A single question about sleep was good at classifying severe vs. non-severe sleep problems in children with ASD, especially with extreme responses. However, a single question was poor at classifying intermediate/non-extreme responses, and a significant number of children with severe sleep problems were missed. Screening with a short, validated questionnaire or asking more probing questions would assist in diagnosing most children with sleep problems. Parents may benefit from sleep education. En ligne : https://doi.org/10.1016/j.rasd.2020.101699 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438

A community-based sleep educational intervention for children with autism spectrum disorder / Lydia L. MACDONALD in Research in Autism Spectrum Disorders, 81 (March 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 81 (March 2021) . - 101719 Titre : A community-based sleep educational intervention for children with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Lydia L. MACDONALD, Auteur ; Laura GRAY, Auteur ; Whitney LORING, Auteur ; Amanda WYATT, Auteur ; Kemberlee BONNET, Auteur ; David SCHLUND, Auteur ; Mary Landis GAST, Auteur ; Beth A. MALOW, Auteur Article en page(s) : 101719 Langues : Anglais (eng) Mots-clés : Sleep education  Autism spectrum disorder  Community  Children’s Sleep Habits Questionnaire Index. décimale : PER Périodiques Résumé : Background Sleep problems are common in children with autism spectrum disorder (ASD). Sleep education, effective in improving sleep in ASD, may be difficult to access. We determined if community-based pediatric therapists could successfully deliver sleep educational interventions to caregivers of children with ASD. Methods A seven-week feasibility study was conducted consisting of 10 children and caregivers. This feasibility study informed the development of a 16-week preliminary effectiveness study, which consisted of 33 children and caregivers. Children, ages 2–12 years, with a clinical diagnosis of autism and caregiver-reported sleep onset delay of 30 min were included. Community therapists underwent comprehensive training in sleep education and then met with caregiver participants to provide sleep education to each family. Semi-structured qualitative interviews were conducted with all families who completed study procedures. In the feasibility and preliminary effectiveness studies, child participants wore an actigraphy watch (at baseline and after sleep education) and caregivers completed the Child Sleep Habits Questionnaire and Family Inventory of Sleep Habits at baseline and after sleep education; the Child Behavior Checklist was also completed by caregivers in the preliminary effectiveness study. Results Educator fidelity to the manualized curriculum was maintained. Caregivers showed appropriate understanding, comfort, and implementation of the curriculum. Qualitative and quantitative measures, including caregiver surveys and actigraphy, showed improvements in child sleep and behavior. Conclusions Community-based therapists can successfully deliver sleep education to families of children with ASD, which has favorable implications for improving access to care in this population. En ligne : https://doi.org/10.1016/j.rasd.2020.101719 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=440 [article] A community-based sleep educational intervention for children with autism spectrum disorder [Texte imprimé et/ou numérique] / Lydia L. MACDONALD, Auteur ; Laura GRAY, Auteur ; Whitney LORING, Auteur ; Amanda WYATT, Auteur ; Kemberlee BONNET, Auteur ; David SCHLUND, Auteur ; Mary Landis GAST, Auteur ; Beth A. MALOW, Auteur . - 101719. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 81 (March 2021) . - 101719 Mots-clés : Sleep education  Autism spectrum disorder  Community  Children’s Sleep Habits Questionnaire Index. décimale : PER Périodiques Résumé : Background Sleep problems are common in children with autism spectrum disorder (ASD). Sleep education, effective in improving sleep in ASD, may be difficult to access. We determined if community-based pediatric therapists could successfully deliver sleep educational interventions to caregivers of children with ASD. Methods A seven-week feasibility study was conducted consisting of 10 children and caregivers. This feasibility study informed the development of a 16-week preliminary effectiveness study, which consisted of 33 children and caregivers. Children, ages 2–12 years, with a clinical diagnosis of autism and caregiver-reported sleep onset delay of 30 min were included. Community therapists underwent comprehensive training in sleep education and then met with caregiver participants to provide sleep education to each family. Semi-structured qualitative interviews were conducted with all families who completed study procedures. In the feasibility and preliminary effectiveness studies, child participants wore an actigraphy watch (at baseline and after sleep education) and caregivers completed the Child Sleep Habits Questionnaire and Family Inventory of Sleep Habits at baseline and after sleep education; the Child Behavior Checklist was also completed by caregivers in the preliminary effectiveness study. Results Educator fidelity to the manualized curriculum was maintained. Caregivers showed appropriate understanding, comfort, and implementation of the curriculum. Qualitative and quantitative measures, including caregiver surveys and actigraphy, showed improvements in child sleep and behavior. Conclusions Community-based therapists can successfully deliver sleep education to families of children with ASD, which has favorable implications for improving access to care in this population. En ligne : https://doi.org/10.1016/j.rasd.2020.101719 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=440

ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults / Beth A. MALOW in Autism Research, 16-8 (August 2023)  

Public ISBD [article]  inAutism Research > 16-8 (August 2023) . - p.1619-1629 Titre : ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Beth A. MALOW, Auteur ; Micah MAZUREK, Auteur ; Gary STOBBE, Auteur ; Mavara M. AGRAWAL, Auteur ; Rachel LOFTIN, Auteur ; David CAUDEL, Auteur ; Amy HESS, Auteur ; Alexander WESTPHAL, Auteur ; Joshua SMITH, Auteur ; Janet SHOUSE, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Kristin SOHL, Auteur Article en page(s) : p.1619-1629 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1?h twice a month for 6?months, with 37 PCPs (n=20 in Cohort 1, and n=17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults. En ligne : https://doi.org/10.1002/aur.2996 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults [Texte imprimé et/ou numérique] / Beth A. MALOW, Auteur ; Micah MAZUREK, Auteur ; Gary STOBBE, Auteur ; Mavara M. AGRAWAL, Auteur ; Rachel LOFTIN, Auteur ; David CAUDEL, Auteur ; Amy HESS, Auteur ; Alexander WESTPHAL, Auteur ; Joshua SMITH, Auteur ; Janet SHOUSE, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Kristin SOHL, Auteur . - p.1619-1629. Langues : Anglais (eng) in Autism Research > 16-8 (August 2023) . - p.1619-1629 Index. décimale : PER Périodiques Résumé : Abstract Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1?h twice a month for 6?months, with 37 PCPs (n=20 in Cohort 1, and n=17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults. En ligne : https://doi.org/10.1002/aur.2996 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

Erratum to: Melatonin for Sleep in Children with Autism: A Controlled Trial Examining Dose, Tolerability, and Outcomes / Beth A. MALOW in Journal of Autism and Developmental Disorders, 42-8 (August 2012)  

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Genetic Variation in Melatonin Pathway Enzymes in Children with Autism Spectrum Disorder and Comorbid Sleep Onset Delay / Olivia J. VEATCH in Journal of Autism and Developmental Disorders, 45-1 (January 2015)  

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Health conditions in autism: Defining the trajectory from adolescence to early adulthood / Beth A. MALOW in Autism Research, 16-7 (July 2023)  

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Melatonin for Sleep in Children with Autism: A Controlled Trial Examining Dose, Tolerability, and Outcomes / Beth A. MALOW in Journal of Autism and Developmental Disorders, 42-8 (August 2012)  

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Melatonin in Children with Autism Spectrum Disorders: Endogenous and Pharmacokinetic Profiles in Relation to Sleep / Suzanne E. GOLDMAN in Journal of Autism and Developmental Disorders, 44-10 (October 2014)  

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Parent-Based Sleep Education for Children with Autism Spectrum Disorders / Beth A. MALOW in Journal of Autism and Developmental Disorders, 44-1 (January 2014)  

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Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence / Suzanne E. GOLDMAN in Journal of Autism and Developmental Disorders, 42-4 (April 2012)  

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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)  

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Relation of Melatonin to Sleep Architecture in Children with Autism / Roberta M. LEU in Journal of Autism and Developmental Disorders, 41-4 (April 2011)  

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Relationship Between Subtypes of Restricted and Repetitive Behaviors and Sleep Disturbance in Autism Spectrum Disorder / Rachel J. HUNDLEY in Journal of Autism and Developmental Disorders, 46-11 (November 2016)  

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