Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study / Judith S. MILLER in Journal of Autism and Developmental Disorders, 43-1 (January 2013)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 43-1 (January 2013) . - p.200-210 Titre : Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study Type de document : Texte imprimé et/ou numérique Auteurs : Judith S. MILLER, Auteur ; Deborah A. BILDER, Auteur ; Megan A. FARLEY, Auteur ; Hilary H. COON, Auteur ; Judith PINBOROUGH-ZIMMERMAN, Auteur ; William R. JENSON, Auteur ; Catherine E. RICE, Auteur ; Eric FOMBONNE, Auteur ; Carmen B. PINGREE, Auteur ; Edward R. RITVO, Auteur ; Riva-Ariella RITVO, Auteur ; William M. MCMAHON, Auteur Année de publication : 2013 Article en page(s) : p.200-210 Langues : Anglais (eng) Mots-clés : Autism  Epidemiology  Prevalence  Diagnostic criteria  Intellectual disability Index. décimale : PER Périodiques Résumé : The purpose of the present study was to re-examine diagnostic data from a state-wide autism prevalence study (n = 489) conducted in the 1980s to investigate the impact of broader diagnostic criteria on autism spectrum disorder (ASD) case status. Sixty-four (59 %) of the 108 originally 'Diagnosed Not Autistic' met the current ASD case definition. The average IQ estimate in the newly identified group (IQ = 35.58; SD = 23.01) was significantly lower than in the original group (IQ = 56.19 SD = 21.21; t = 5.75; p .0001). Today's diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. The current analysis puts this historic work into context and highlights differences in ascertainment between epidemiological studies performed decades ago and those of today. En ligne : http://dx.doi.org/10.1007/s10803-012-1566-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=187 [article] Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study [Texte imprimé et/ou numérique] / Judith S. MILLER, Auteur ; Deborah A. BILDER, Auteur ; Megan A. FARLEY, Auteur ; Hilary H. COON, Auteur ; Judith PINBOROUGH-ZIMMERMAN, Auteur ; William R. JENSON, Auteur ; Catherine E. RICE, Auteur ; Eric FOMBONNE, Auteur ; Carmen B. PINGREE, Auteur ; Edward R. RITVO, Auteur ; Riva-Ariella RITVO, Auteur ; William M. MCMAHON, Auteur . - 2013 . - p.200-210. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 43-1 (January 2013) . - p.200-210 Mots-clés : Autism  Epidemiology  Prevalence  Diagnostic criteria  Intellectual disability Index. décimale : PER Périodiques Résumé : The purpose of the present study was to re-examine diagnostic data from a state-wide autism prevalence study (n = 489) conducted in the 1980s to investigate the impact of broader diagnostic criteria on autism spectrum disorder (ASD) case status. Sixty-four (59 %) of the 108 originally 'Diagnosed Not Autistic' met the current ASD case definition. The average IQ estimate in the newly identified group (IQ = 35.58; SD = 23.01) was significantly lower than in the original group (IQ = 56.19 SD = 21.21; t = 5.75; p .0001). Today's diagnostic criteria applied to participants ascertained in the 1980s identified more cases of autism with intellectual disability. The current analysis puts this historic work into context and highlights differences in ascertainment between epidemiological studies performed decades ago and those of today. En ligne : http://dx.doi.org/10.1007/s10803-012-1566-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=187

Caregiver perspectives on interventions for behavior challenges in autistic children / Jessica E. TSCHIDA in Research in Autism Spectrum Disorders, 81 (March 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 81 (March 2021) . - 101714 Titre : Caregiver perspectives on interventions for behavior challenges in autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Jessica E. TSCHIDA, Auteur ; Brenna B. MADDOX, Auteur ; Jennifer R. BERTOLLO, Auteur ; Emily S. KUSCHNER, Auteur ; Judith S. MILLER, Auteur ; Thomas H. OLLENDICK, Auteur ; Ross W. GREENE, Auteur ; Benjamin E. YERYS, Auteur Article en page(s) : 101714 Langues : Anglais (eng) Mots-clés : Aggression  Autism  Intervention  Parent  School-age Index. décimale : PER Périodiques Résumé : Background Children with an autism spectrum disorder (ASD) diagnosis have high rates of behaviors such as aggression, oppositional behaviors, and tantrums. Despite effectiveness of interventions for these behavior challenges in a considerable number of autistic children, there is little information on stakeholder perspectives about available interventions. The present study preliminarily characterized caregiver perspectives on intervention for behavior challenges in school-age autistic children. Method 321 caregivers of autistic children completed a survey about interventions used to address behavior challenges. Kruskal-Wallis rank-sum tests and subsequent pairwise comparisons using a Wilcoxon rank-sum test with False-Discovery Rate-adjusted p-values (q<0.05) were conducted for caregiver ratings of interventions. Thematic analysis was conducted for caregivers’ open-ended suggestions for improving interventions. Results Caregivers indicated limited approval of attempted interventions. For children with an IQ ? 70, the omnibus test was significant for caregiver ratings of intervention helpfulness (?2(8) = 38.707, q<0.001, ?2 = 0.017) with medications and Collaborative & Proactive Solutions (CPS; Greene, 2010) therapy rated highest, and was significant for caregiver ratings of amount of improvement maintained over time (?2(8) = 46.013, q<0.001, ?2 = 0.020) with medications, CPS, applied behavioral analysis (ABA), and “other interventions” rated highest. For children with an IQ < 70, pairwise tests revealed no significant differences. Caregivers suggested improvements at the systems, provider, caregiver/family, and child/intervention levels. Conclusions Caregivers’ limited approval of interventions used to address behavior challenges suggests the need for improved intervention options. While medications and ABA are standard-of-care interventions, CPS may be a caregiver-preferred and efficacious option that is underutilized among autistic children with an IQ ? 70. En ligne : https://doi.org/10.1016/j.rasd.2020.101714 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=440 [article] Caregiver perspectives on interventions for behavior challenges in autistic children [Texte imprimé et/ou numérique] / Jessica E. TSCHIDA, Auteur ; Brenna B. MADDOX, Auteur ; Jennifer R. BERTOLLO, Auteur ; Emily S. KUSCHNER, Auteur ; Judith S. MILLER, Auteur ; Thomas H. OLLENDICK, Auteur ; Ross W. GREENE, Auteur ; Benjamin E. YERYS, Auteur . - 101714. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 81 (March 2021) . - 101714 Mots-clés : Aggression  Autism  Intervention  Parent  School-age Index. décimale : PER Périodiques Résumé : Background Children with an autism spectrum disorder (ASD) diagnosis have high rates of behaviors such as aggression, oppositional behaviors, and tantrums. Despite effectiveness of interventions for these behavior challenges in a considerable number of autistic children, there is little information on stakeholder perspectives about available interventions. The present study preliminarily characterized caregiver perspectives on intervention for behavior challenges in school-age autistic children. Method 321 caregivers of autistic children completed a survey about interventions used to address behavior challenges. Kruskal-Wallis rank-sum tests and subsequent pairwise comparisons using a Wilcoxon rank-sum test with False-Discovery Rate-adjusted p-values (q<0.05) were conducted for caregiver ratings of interventions. Thematic analysis was conducted for caregivers’ open-ended suggestions for improving interventions. Results Caregivers indicated limited approval of attempted interventions. For children with an IQ ? 70, the omnibus test was significant for caregiver ratings of intervention helpfulness (?2(8) = 38.707, q<0.001, ?2 = 0.017) with medications and Collaborative & Proactive Solutions (CPS; Greene, 2010) therapy rated highest, and was significant for caregiver ratings of amount of improvement maintained over time (?2(8) = 46.013, q<0.001, ?2 = 0.020) with medications, CPS, applied behavioral analysis (ABA), and “other interventions” rated highest. For children with an IQ < 70, pairwise tests revealed no significant differences. Caregivers suggested improvements at the systems, provider, caregiver/family, and child/intervention levels. Conclusions Caregivers’ limited approval of interventions used to address behavior challenges suggests the need for improved intervention options. While medications and ABA are standard-of-care interventions, CPS may be a caregiver-preferred and efficacious option that is underutilized among autistic children with an IQ ? 70. En ligne : https://doi.org/10.1016/j.rasd.2020.101714 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=440

Development and Preliminary Validation of the Accommodations & Impact Scale for Developmental Disabilities / Manisha D. UDHNANI in Journal of Autism and Developmental Disorders, 54-5 (May 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-5 (May 2024) . - p.1870-1881 Titre : Development and Preliminary Validation of the Accommodations & Impact Scale for Developmental Disabilities Type de document : Texte imprimé et/ou numérique Auteurs : Manisha D. UDHNANI, Auteur ; Judith S. MILLER, Auteur ; Luc LECAVALIER, Auteur Article en page(s) : p.1870-1881 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (Mage = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha = .93) and test-retest (ICC = .95) reliability. Scores were normally distributed and sensitive to age (r = ? .19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = ? .35), and challenging behaviors (r = .57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children. En ligne : https://doi.org/10.1007/s10803-023-05929-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=530 [article] Development and Preliminary Validation of the Accommodations & Impact Scale for Developmental Disabilities [Texte imprimé et/ou numérique] / Manisha D. UDHNANI, Auteur ; Judith S. MILLER, Auteur ; Luc LECAVALIER, Auteur . - p.1870-1881. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-5 (May 2024) . - p.1870-1881 Index. décimale : PER Périodiques Résumé : The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (Mage = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha = .93) and test-retest (ICC = .95) reliability. Scores were normally distributed and sensitive to age (r = ? .19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = ? .35), and challenging behaviors (r = .57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children. En ligne : https://doi.org/10.1007/s10803-023-05929-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=530

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

Genome-wide linkage analyses of two repetitive behavior phenotypes in Utah pedigrees with autism spectrum disorders / Dale CANNON in Molecular Autism, (February 2010)  

Public ISBD [article]  inMolecular Autism > (February 2010) . - 13 p. Titre : Genome-wide linkage analyses of two repetitive behavior phenotypes in Utah pedigrees with autism spectrum disorders Type de document : Texte imprimé et/ou numérique Auteurs : Dale CANNON, Auteur ; William M. MCMAHON, Auteur ; Hilary H. COON, Auteur ; Kristina ALLEN-BRADY, Auteur ; Reid ROBISON, Auteur ; Judith S. MILLER, Auteur ; Michele E. VILLALOBOS, Auteur ; Natalie K. WAHMHOFF, Auteur Année de publication : 2010 Article en page(s) : 13 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Background It has been suggested that efforts to identify genetic risk markers of autism spectrum disorder (ASD) would benefit from the analysis of more narrowly defined ASD phenotypes. Previous research indicates that 'insistence on sameness' (IS) and 'repetitive sensory-motor actions' (RSMA) are two factors within the ASD 'repetitive and stereotyped behavior' domain. The primary aim of this study was to identify genetic risk markers of both factors to allow comparison of those markers with one another and with markers found in the same set of pedigrees using ASD diagnosis as the phenotype. Thus, we empirically addresses the possibilities that more narrowly defined phenotypes improve linkage analysis signals and that different narrowly defined phenotypes are associated with different loci. Secondary aims were to examine the correlates of IS and RSMA and to assess the heritability of both scales. Methods A genome-wide linkage analysis was conducted with a sample of 70 multiplex ASD pedigrees using IS and RSMA as phenotypes. Genotyping services were provided by the Center for Inherited Disease Research using the 6 K single nucleotide polymorphism linkage panel. Analysis was done using the multipoint linkage software program MCLINK, a Markov chain Monte Carlo (MCMC) method that allows for multilocus linkage analysis on large extended pedigrees. Results Genome-wide significance was observed for IS at 2q37.1-q37.3 (dominant model heterogeneity lod score (hlod) 3.42) and for RSMA at 15q13.1-q14 (recessive model hlod 3.93). We found some linkage signals that overlapped and others that were not observed in our previous linkage analysis of the ASD phenotype in the same pedigrees, and regions varied in the range of phenotypes with which they were linked. A new finding with respect to IS was that it is positively associated with IQ if the IS-RSMA correlation is statistically controlled. Conclusions The finding that IS and RSMA are linked to different regions that only partially overlap regions previously identified with ASD as the phenotype supports the value of including multiple, narrowly defined phenotypes in ASD genetic research. Further, we replicated previous reports indicating that RSMA is more strongly associated than IS with measures of ASD severity. En ligne : http://dx.doi.org/10.1186/2040-2392-1-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=102 [article] Genome-wide linkage analyses of two repetitive behavior phenotypes in Utah pedigrees with autism spectrum disorders [Texte imprimé et/ou numérique] / Dale CANNON, Auteur ; William M. MCMAHON, Auteur ; Hilary H. COON, Auteur ; Kristina ALLEN-BRADY, Auteur ; Reid ROBISON, Auteur ; Judith S. MILLER, Auteur ; Michele E. VILLALOBOS, Auteur ; Natalie K. WAHMHOFF, Auteur . - 2010 . - 13 p. Langues : Anglais (eng) in Molecular Autism > (February 2010) . - 13 p. Index. décimale : PER Périodiques Résumé : Background It has been suggested that efforts to identify genetic risk markers of autism spectrum disorder (ASD) would benefit from the analysis of more narrowly defined ASD phenotypes. Previous research indicates that 'insistence on sameness' (IS) and 'repetitive sensory-motor actions' (RSMA) are two factors within the ASD 'repetitive and stereotyped behavior' domain. The primary aim of this study was to identify genetic risk markers of both factors to allow comparison of those markers with one another and with markers found in the same set of pedigrees using ASD diagnosis as the phenotype. Thus, we empirically addresses the possibilities that more narrowly defined phenotypes improve linkage analysis signals and that different narrowly defined phenotypes are associated with different loci. Secondary aims were to examine the correlates of IS and RSMA and to assess the heritability of both scales. Methods A genome-wide linkage analysis was conducted with a sample of 70 multiplex ASD pedigrees using IS and RSMA as phenotypes. Genotyping services were provided by the Center for Inherited Disease Research using the 6 K single nucleotide polymorphism linkage panel. Analysis was done using the multipoint linkage software program MCLINK, a Markov chain Monte Carlo (MCMC) method that allows for multilocus linkage analysis on large extended pedigrees. Results Genome-wide significance was observed for IS at 2q37.1-q37.3 (dominant model heterogeneity lod score (hlod) 3.42) and for RSMA at 15q13.1-q14 (recessive model hlod 3.93). We found some linkage signals that overlapped and others that were not observed in our previous linkage analysis of the ASD phenotype in the same pedigrees, and regions varied in the range of phenotypes with which they were linked. A new finding with respect to IS was that it is positively associated with IQ if the IS-RSMA correlation is statistically controlled. Conclusions The finding that IS and RSMA are linked to different regions that only partially overlap regions previously identified with ASD as the phenotype supports the value of including multiple, narrowly defined phenotypes in ASD genetic research. Further, we replicated previous reports indicating that RSMA is more strongly associated than IS with measures of ASD severity. En ligne : http://dx.doi.org/10.1186/2040-2392-1-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=102

Genome-wide linkage using the Social Responsiveness Scale in Utah autism pedigrees / Hilary H. COON in Molecular Autism, (April 2010)  

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Neurobiological Mechanisms of Anxiety in ASD / John D. HERRINGTON  

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Policing Black autistic children: A qualitative approach to understanding Black caregivers' concerns / Ashlee YATES FLANAGAN in Autism, 29-5 (May 2025)  

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The Accuracy of the ADOS-2 in Identifying Autism among Adults with Complex Psychiatric Conditions / Brenna B. MADDOX in Journal of Autism and Developmental Disorders, 47-9 (September 2017)  

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