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 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] / 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

Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data / Katherine GOTHAM in Autism, 19-7 (October 2015)  

Public ISBD [article]  inAutism > 19-7 (October 2015) . - p.794-804 Titre : Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data Type de document : texte imprimé Auteurs : Katherine GOTHAM, Auteur ; Alison R. MARVIN, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Zachary WARREN, Auteur ; Connie M. ANDERSON, Auteur ; Paul A. LAW, Auteur ; Jessica K. LAW, Auteur ; Paul H. LIPKIN, Auteur Année de publication : 2015 Article en page(s) : p.794-804 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorder  Interactive Autism Network  outcome  patient-centered outcome research Index. décimale : PER Périodiques Résumé : Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders’ priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18–71 years (M = 38.5 years, standard deviation = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18–58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample’s significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families. En ligne : http://dx.doi.org/10.1177/1362361315583818 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data [texte imprimé] / Katherine GOTHAM, Auteur ; Alison R. MARVIN, Auteur ; Julie LOUNDS TAYLOR, Auteur ; Zachary WARREN, Auteur ; Connie M. ANDERSON, Auteur ; Paul A. LAW, Auteur ; Jessica K. LAW, Auteur ; Paul H. LIPKIN, Auteur . - 2015 . - p.794-804. Langues : Anglais (eng) in Autism > 19-7 (October 2015) . - p.794-804 Mots-clés : adults  autism spectrum disorder  Interactive Autism Network  outcome  patient-centered outcome research Index. décimale : PER Périodiques Résumé : Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders’ priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18–71 years (M = 38.5 years, standard deviation = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18–58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample’s significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families. En ligne : http://dx.doi.org/10.1177/1362361315583818 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

Elopement Patterns and Caregiver Strategies / Allan M. ANDERSEN in Journal of Autism and Developmental Disorders, 50-6 (June 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-6 (June 2020) . - p.2053-2063 Titre : Elopement Patterns and Caregiver Strategies Type de document : texte imprimé Auteurs : Allan M. ANDERSEN, Auteur ; J. Kiely LAW, Auteur ; Alison R. MARVIN, Auteur ; Paul H. LIPKIN, Auteur Article en page(s) : p.2053-2063 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Elopement  Injury  Mortality  Wandering Index. décimale : PER Périodiques Résumé : The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions such as fencing and window locks had favorable effectiveness/burden profiles. Tracking devices were used infrequently and rated as having low effectiveness. Behavioral specialists were commonly used, rated as effective, and most often provided by insurance. Medications were rated as having low effectiveness for EB, whether taken off-label for EB or for other reasons. Further study is needed to identify EB interventions that are effective, affordable, and easy to implement are needed. En ligne : http://dx.doi.org/10.1007/s10803-019-03961-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425 [article] Elopement Patterns and Caregiver Strategies [texte imprimé] / Allan M. ANDERSEN, Auteur ; J. Kiely LAW, Auteur ; Alison R. MARVIN, Auteur ; Paul H. LIPKIN, Auteur . - p.2053-2063. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-6 (June 2020) . - p.2053-2063 Mots-clés : Autism Spectrum Disorder  Elopement  Injury  Mortality  Wandering Index. décimale : PER Périodiques Résumé : The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions such as fencing and window locks had favorable effectiveness/burden profiles. Tracking devices were used infrequently and rated as having low effectiveness. Behavioral specialists were commonly used, rated as effective, and most often provided by insurance. Medications were rated as having low effectiveness for EB, whether taken off-label for EB or for other reasons. Further study is needed to identify EB interventions that are effective, affordable, and easy to implement are needed. En ligne : http://dx.doi.org/10.1007/s10803-019-03961-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425

Epilepsy and Autism Severity: A Study of 6,975 Children / Joshua B. EWEN in Autism Research, 12-8 (August 2019)  

Public ISBD [article]  inAutism Research > 12-8 (August 2019) . - p.1251-1259 Titre : Epilepsy and Autism Severity: A Study of 6,975 Children Type de document : texte imprimé Auteurs : Joshua B. EWEN, Auteur ; Alison R. MARVIN, Auteur ; J. Kiely LAW, Auteur ; Paul H. LIPKIN, Auteur Article en page(s) : p.1251-1259 Langues : Anglais (eng) Mots-clés : effect size  epilepsy  regression  risk factor  severity Index. décimale : PER Périodiques Résumé : Epilepsy is known to occur in a higher-than-expected proportion of individuals with autism spectrum disorders (ASDs). Prior studies of this heterogeneous disorder have suggested that intelligence quotient (IQ) may drive this relationship. Because intellectual disability (ID) is, independently of ASD, a risk factor for epilepsy, current literature calls into question the long-understood unique relationship between ASD and epilepsy. Second, data have been unclear about whether developmental regression in ASD is associated with epilepsy. Using two cohorts from an online research registry, totaling 6,975 children with ASD, we examined the independent role of four ASD severity measures in driving the relationship with epilepsy: ID, language impairment, core ASD symptom severity, and motor dysfunction, controlling for two known relevant factors: age and sex. We also examined whether developmental regression and epilepsy have an independent statistical link. All four ASD severity factors showed independent statistical associations with epilepsy in one cohort, and three in the other. ID showed the largest relative risk (RR) in both cohorts. Effect sizes were modest. Regression similarly showed an independent statistical association with epilepsy, but with small effect size. Similar to previous work, ID showed the greatest contribution to RR for epilepsy among children with ASD. However, other ASD severity markers showed statistical associations, demonstrating that the ASD-epilepsy association is not reducible to the effect of ID. Inconsistencies in the literature may be due to underpowered studies, yet moving forward with larger-n studies, clinical significance and scientific relevance may be dictated by effect size and not merely statistical significance. Autism Res 2019, 12: 1251-1259. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Epilepsy is known to occur more often in individuals with autism spectrum disorders (ASDs) than is the case in the general population. The association between ASD and epilepsy is of interest because studying the two disorders in combination may help advance our understanding of genetic, molecular, and cellular mechanisms-as well as therapies-for both. Recent studies have suggested that intelligence quotient (IQ) alone in individuals with ASD may account for the increased prevalence of epilepsy. However, our approach was to look at a range of severity factors relevant to ASD and to look for correlations between each severity factor and epilepsy, within two large samples of children with ASD. In summary, we found that each severity factor-presence of intellectual disability, presence of language atypicalities, ASD-specific symptoms severity, and presence of motor issues-independently predicted a small increased risk for epilepsy, countering the argument that IQ alone is a risk factor. We also examined whether epilepsy is associated with developmental regression. Although severe epilepsy syndromes such as Landau-Kleffner syndrome are known to cause autistic-like symptoms following developmental regression, there is controversy about whether other forms of epilepsy are associated with the more common developmental regression seen in many young children with epilepsy. Indeed, we found a small association between epilepsy and developmental regression. En ligne : http://dx.doi.org/10.1002/aur.2132 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405 [article] Epilepsy and Autism Severity: A Study of 6,975 Children [texte imprimé] / Joshua B. EWEN, Auteur ; Alison R. MARVIN, Auteur ; J. Kiely LAW, Auteur ; Paul H. LIPKIN, Auteur . - p.1251-1259. Langues : Anglais (eng) in Autism Research > 12-8 (August 2019) . - p.1251-1259 Mots-clés : effect size  epilepsy  regression  risk factor  severity Index. décimale : PER Périodiques Résumé : Epilepsy is known to occur in a higher-than-expected proportion of individuals with autism spectrum disorders (ASDs). Prior studies of this heterogeneous disorder have suggested that intelligence quotient (IQ) may drive this relationship. Because intellectual disability (ID) is, independently of ASD, a risk factor for epilepsy, current literature calls into question the long-understood unique relationship between ASD and epilepsy. Second, data have been unclear about whether developmental regression in ASD is associated with epilepsy. Using two cohorts from an online research registry, totaling 6,975 children with ASD, we examined the independent role of four ASD severity measures in driving the relationship with epilepsy: ID, language impairment, core ASD symptom severity, and motor dysfunction, controlling for two known relevant factors: age and sex. We also examined whether developmental regression and epilepsy have an independent statistical link. All four ASD severity factors showed independent statistical associations with epilepsy in one cohort, and three in the other. ID showed the largest relative risk (RR) in both cohorts. Effect sizes were modest. Regression similarly showed an independent statistical association with epilepsy, but with small effect size. Similar to previous work, ID showed the greatest contribution to RR for epilepsy among children with ASD. However, other ASD severity markers showed statistical associations, demonstrating that the ASD-epilepsy association is not reducible to the effect of ID. Inconsistencies in the literature may be due to underpowered studies, yet moving forward with larger-n studies, clinical significance and scientific relevance may be dictated by effect size and not merely statistical significance. Autism Res 2019, 12: 1251-1259. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Epilepsy is known to occur more often in individuals with autism spectrum disorders (ASDs) than is the case in the general population. The association between ASD and epilepsy is of interest because studying the two disorders in combination may help advance our understanding of genetic, molecular, and cellular mechanisms-as well as therapies-for both. Recent studies have suggested that intelligence quotient (IQ) alone in individuals with ASD may account for the increased prevalence of epilepsy. However, our approach was to look at a range of severity factors relevant to ASD and to look for correlations between each severity factor and epilepsy, within two large samples of children with ASD. In summary, we found that each severity factor-presence of intellectual disability, presence of language atypicalities, ASD-specific symptoms severity, and presence of motor issues-independently predicted a small increased risk for epilepsy, countering the argument that IQ alone is a risk factor. We also examined whether epilepsy is associated with developmental regression. Although severe epilepsy syndromes such as Landau-Kleffner syndrome are known to cause autistic-like symptoms following developmental regression, there is controversy about whether other forms of epilepsy are associated with the more common developmental regression seen in many young children with epilepsy. Indeed, we found a small association between epilepsy and developmental regression. En ligne : http://dx.doi.org/10.1002/aur.2132 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405

Mood Disorders in Mothers of Children on the Autism Spectrum Are Associated with Higher Functioning Autism / Roma A. VASA in Autism Research and Treatment, (July 2012)  

Public ISBD [article]  inAutism Research and Treatment > (July 2012) . - 8 p. Titre : Mood Disorders in Mothers of Children on the Autism Spectrum Are Associated with Higher Functioning Autism Type de document : texte imprimé Auteurs : Roma A. VASA, Auteur ; Connie M. ANDERSON, Auteur ; Alison R. MARVIN, Auteur ; Rebecca E. ROSENBERG, Auteur ; J. Kiely LAW, Auteur ; Julia THORN, Auteur ; Geeta SARPHARE, Auteur ; Paul A. LAW, Auteur Année de publication : 2012 Article en page(s) : 8 p. Langues : Anglais (eng) Mots-clés : Trouble de l'humeur Index. décimale : PER Périodiques Résumé : Mood disorders occur more frequently in family members of individuals with autism spectrum disorders (ASD) than in the general population. There may be associations between maternal mood disorder history patterns and specific ASD phenotypes. We therefore examined the relationship between maternal mood disorders and child autism spectrum disorders in 998 mother-child dyads enrolled in a national online autism registry and database. Mothers of children with ASD completed online questionnaires addressing their child’s ASD as well as their own mood disorder history. In multivariate logistic regression models of ASD diagnoses, the odds of an Asperger disorder versus autistic disorder diagnosis were higher among those children whose mothers had a lifetime history of bipolar disorder (OR 2.11, CI 1.20, 3.69) or depression (OR 1.62, CI 1.19, 2.19). Further, maternal mood disorder onset before first pregnancy was associated with higher odds (OR 2.35, CI 1.48, 3.73) of an Asperger versus autism diagnosis among this sample of children with ASD. These data suggest that differences in maternal mood disorder history may be associated with ASD phenotype in offspring. En ligne : http://dx.doi.org/10.1155/2012/435646 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=181 [article] Mood Disorders in Mothers of Children on the Autism Spectrum Are Associated with Higher Functioning Autism [texte imprimé] / Roma A. VASA, Auteur ; Connie M. ANDERSON, Auteur ; Alison R. MARVIN, Auteur ; Rebecca E. ROSENBERG, Auteur ; J. Kiely LAW, Auteur ; Julia THORN, Auteur ; Geeta SARPHARE, Auteur ; Paul A. LAW, Auteur . - 2012 . - 8 p. Langues : Anglais (eng) in Autism Research and Treatment > (July 2012) . - 8 p. Mots-clés : Trouble de l'humeur Index. décimale : PER Périodiques Résumé : Mood disorders occur more frequently in family members of individuals with autism spectrum disorders (ASD) than in the general population. There may be associations between maternal mood disorder history patterns and specific ASD phenotypes. We therefore examined the relationship between maternal mood disorders and child autism spectrum disorders in 998 mother-child dyads enrolled in a national online autism registry and database. Mothers of children with ASD completed online questionnaires addressing their child’s ASD as well as their own mood disorder history. In multivariate logistic regression models of ASD diagnoses, the odds of an Asperger disorder versus autistic disorder diagnosis were higher among those children whose mothers had a lifetime history of bipolar disorder (OR 2.11, CI 1.20, 3.69) or depression (OR 1.62, CI 1.19, 2.19). Further, maternal mood disorder onset before first pregnancy was associated with higher odds (OR 2.35, CI 1.48, 3.73) of an Asperger versus autism diagnosis among this sample of children with ASD. These data suggest that differences in maternal mood disorder history may be associated with ASD phenotype in offspring. En ligne : http://dx.doi.org/10.1155/2012/435646 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=181

Psychotropic Medication Use Among Children With Autism Spectrum Disorders Enrolled in a National Registry, 2007–2008 / Rebecca E. ROSENBERG in Journal of Autism and Developmental Disorders, 40-3 (March 2010)  

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Response to Joint Attention in Toddlers at Risk for Autism Spectrum Disorder: A Prospective Study / Michelle SULLIVAN in Journal of Autism and Developmental Disorders, 37-1 (January 2007)  

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Sex differences in employment and supports for adults with autism spectrum disorder / Julie LOUNDS TAYLOR in Autism, 23-7 (October 2019)  

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Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry / Amy M. DANIELS in Journal of Autism and Developmental Disorders, 42-2 (February 2012)  

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