Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians / Sarah WIGHAM in Autism, 27-2 (February 2023)  

Public ISBD [article]  inAutism > 27-2 (February 2023) . - p.344-355 Titre : Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians Type de document : texte imprimé Auteurs : Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ann LE COUTEUR, Auteur ; Colin WILSON, Auteur ; Ian ENSUM, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.344-355 Langues : Anglais (eng) Mots-clés : adult  autism  Delphi consensus  optimal services  post-diagnostic support  stakeholder involvement Index. décimale : PER Périodiques Résumé : Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally. En ligne : http://dx.doi.org/10.1177/13623613221097502 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493 [article] Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians [texte imprimé] / Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ann LE COUTEUR, Auteur ; Colin WILSON, Auteur ; Ian ENSUM, Auteur ; Jeremy R. PARR, Auteur . - p.344-355. Langues : Anglais (eng) in Autism > 27-2 (February 2023) . - p.344-355 Mots-clés : adult  autism  Delphi consensus  optimal services  post-diagnostic support  stakeholder involvement Index. décimale : PER Périodiques Résumé : Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally. En ligne : http://dx.doi.org/10.1177/13623613221097502 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493

Development of the anxiety scale for children with autism spectrum disorder (ASC-ASD) / Jacqui RODGERS in Autism Research, 9-11 (November 2016)  

Public ISBD [article]  inAutism Research > 9-11 (November 2016) . - p.1205-1215 Titre : Development of the anxiety scale for children with autism spectrum disorder (ASC-ASD) Type de document : texte imprimé Auteurs : Jacqui RODGERS, Auteur ; Sarah WIGHAM, Auteur ; Helen MCCONACHIE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1205-1215 Langues : Anglais (eng) Mots-clés : anxiety  measurement  child report  parent report  clinical psychology Index. décimale : PER Périodiques Résumé : Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely used measure for typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). However, such anxiety measures may require adaptation to accommodate characteristics of those with ASD. An adapted version of the RCADS was created based on empirical evidence of anxiety phenomenology in ASD, which included additional items related to sensory anxiety, intolerance of uncertainty, and phobias. Content validity was refined during focus groups with parents. Polychoric factor analysis was undertaken on data from 170 children with ASD, aged 8-16, and their parents. This process resulted in the creation of a new 24 item scale (self and parent report) each with four subscales: Performance Anxiety, Uncertainty, Anxious Arousal, and Separation Anxiety, with evidence of good reliability and validity. The freely available Anxiety Scale for Children - ASD, Parent and Child versions (ASC-ASD) has promising psychometric properties including good internal consistency, validity, and 1 month test–retest reliability. En ligne : http://dx.doi.org/10.1002/aur.1603 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=297 [article] Development of the anxiety scale for children with autism spectrum disorder (ASC-ASD) [texte imprimé] / Jacqui RODGERS, Auteur ; Sarah WIGHAM, Auteur ; Helen MCCONACHIE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jeremy R. PARR, Auteur . - p.1205-1215. Langues : Anglais (eng) in Autism Research > 9-11 (November 2016) . - p.1205-1215 Mots-clés : anxiety  measurement  child report  parent report  clinical psychology Index. décimale : PER Périodiques Résumé : Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely used measure for typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). However, such anxiety measures may require adaptation to accommodate characteristics of those with ASD. An adapted version of the RCADS was created based on empirical evidence of anxiety phenomenology in ASD, which included additional items related to sensory anxiety, intolerance of uncertainty, and phobias. Content validity was refined during focus groups with parents. Polychoric factor analysis was undertaken on data from 170 children with ASD, aged 8-16, and their parents. This process resulted in the creation of a new 24 item scale (self and parent report) each with four subscales: Performance Anxiety, Uncertainty, Anxious Arousal, and Separation Anxiety, with evidence of good reliability and validity. The freely available Anxiety Scale for Children - ASD, Parent and Child versions (ASC-ASD) has promising psychometric properties including good internal consistency, validity, and 1 month test–retest reliability. En ligne : http://dx.doi.org/10.1002/aur.1603 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=297

Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review / Sarah A. CASSIDY in Autism Research, 11-5 (May 2018)  

Public ISBD [article]  inAutism Research > 11-5 (May 2018) . - p.738-754 Titre : Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review Type de document : texte imprimé Auteurs : Sarah A. CASSIDY, Auteur ; Louise BRADLEY, Auteur ; E. BOWEN, Auteur ; Sarah WIGHAM, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.738-754 Langues : Anglais (eng) Mots-clés : autism spectrum condition  general population  Asperger syndrome  depression  measurement properties  assessment  systematic review  COSMIN Index. décimale : PER Périodiques Résumé : Depression is the most commonly experienced mental health condition in adults with autism spectrum conditions (ASC). However, it is unclear what tools are currently being used to assess depression in ASC, or whether tools need to be adapted for this group. This systematic review therefore aimed to identify tools used to assess depression in adults with and without ASC, and then evaluate these tools for their appropriateness and measurement properties. Medline, PsychINFO and Web of Knowledge were searched for studies of depression in: (a) adults with ASC, without co?morbid intellectual disability; and (b) adults from the general population without co?morbid conditions. Articles examining the measurement properties of these tools were then searched for using a methodological filter in PubMed, and the quality of the evidence was evaluated using the COSMIN checklist. Twelve articles were identified which utilized three tools to assess depression in adults with ASC, but only one article which assessed the measurement properties of one of these tools was identified and thus evaluated. Sixty?four articles were identified which utilized five tools to assess depression in general population adults, and fourteen articles had assessed the measurement properties of these tools. Overall, two tools were found to be robust in their measurement properties in the general population the Beck Depression Inventory (BDI?II), and the patient health questionnaire (PHQ 9). Crucially only one study was identified from the COSMIN search, which showed weak evidence in support of the measurement properties of the BDI?II in an ASC sample. Implications for effective measurement of depression in ASC are discussed. Autism Res 2018, 11: 738 754. ? 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. Lay Summary Depression is the most common mental health problem experienced by adults with autism. However, the current study found very limited evidence regarding how useful tools developed for the general population are for adults with autism. We therefore suggest how these tools could be adapted to more effectively assess depression in adults with autism, and improve these individuals access to mental health assessment and support. En ligne : https://doi.org/10.1002/aur.1922 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=363 [article] Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review [texte imprimé] / Sarah A. CASSIDY, Auteur ; Louise BRADLEY, Auteur ; E. BOWEN, Auteur ; Sarah WIGHAM, Auteur ; Jacqui RODGERS, Auteur . - p.738-754. Langues : Anglais (eng) in Autism Research > 11-5 (May 2018) . - p.738-754 Mots-clés : autism spectrum condition  general population  Asperger syndrome  depression  measurement properties  assessment  systematic review  COSMIN Index. décimale : PER Périodiques Résumé : Depression is the most commonly experienced mental health condition in adults with autism spectrum conditions (ASC). However, it is unclear what tools are currently being used to assess depression in ASC, or whether tools need to be adapted for this group. This systematic review therefore aimed to identify tools used to assess depression in adults with and without ASC, and then evaluate these tools for their appropriateness and measurement properties. Medline, PsychINFO and Web of Knowledge were searched for studies of depression in: (a) adults with ASC, without co?morbid intellectual disability; and (b) adults from the general population without co?morbid conditions. Articles examining the measurement properties of these tools were then searched for using a methodological filter in PubMed, and the quality of the evidence was evaluated using the COSMIN checklist. Twelve articles were identified which utilized three tools to assess depression in adults with ASC, but only one article which assessed the measurement properties of one of these tools was identified and thus evaluated. Sixty?four articles were identified which utilized five tools to assess depression in general population adults, and fourteen articles had assessed the measurement properties of these tools. Overall, two tools were found to be robust in their measurement properties in the general population the Beck Depression Inventory (BDI?II), and the patient health questionnaire (PHQ 9). Crucially only one study was identified from the COSMIN search, which showed weak evidence in support of the measurement properties of the BDI?II in an ASC sample. Implications for effective measurement of depression in ASC are discussed. Autism Res 2018, 11: 738 754. ? 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. Lay Summary Depression is the most common mental health problem experienced by adults with autism. However, the current study found very limited evidence regarding how useful tools developed for the general population are for adults with autism. We therefore suggest how these tools could be adapted to more effectively assess depression in adults with autism, and improve these individuals access to mental health assessment and support. En ligne : https://doi.org/10.1002/aur.1922 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=363

Measuring the relationship between the parental Broader Autism Phenotype, parent–child interaction, and children’s progress following parent mediated intervention / Jeremy R. PARR in Research in Autism Spectrum Disorders, 20 (December 2015)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 20 (December 2015) . - p.24-30 Titre : Measuring the relationship between the parental Broader Autism Phenotype, parent–child interaction, and children’s progress following parent mediated intervention Type de document : texte imprimé Auteurs : Jeremy R. PARR, Auteur ; Laura GRAY, Auteur ; Sarah WIGHAM, Auteur ; Helen MCCONACHIE, Auteur ; Ann LE COUTEUR, Auteur Article en page(s) : p.24-30 Langues : Anglais (eng) Mots-clés : Broader Autism Phenotype  Child progress  Parent–child interaction  Early intervention Index. décimale : PER Périodiques Résumé : Parents of children with ASD may show ASD type behaviours including particular social communication interaction styles—the Broader Autism Phenotype (BAP). Understanding the potential impact of defined parent characteristics may be relevant when designing and evaluating the efficacy and effectiveness of parent-mediated interventions. In this proof of principle analysis, 18 mothers who had taken part in an early parent-mediated intervention later completed Family History Interviews. Parent data were split into lower and higher BAP groups. There was a significant negative correlation between BAP factor total scores and mother–child interaction total and post-intervention change scores. Change in number of words understood was significantly greater in children of mothers scoring in the lower BAP group compared with children of mothers in the higher BAP group. These preliminary findings provide some support for further investigation of parent BAP status as a potential moderator of the impact of early parent-mediated psychosocial interventions. En ligne : http://dx.doi.org/10.1016/j.rasd.2015.07.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=270 [article] Measuring the relationship between the parental Broader Autism Phenotype, parent–child interaction, and children’s progress following parent mediated intervention [texte imprimé] / Jeremy R. PARR, Auteur ; Laura GRAY, Auteur ; Sarah WIGHAM, Auteur ; Helen MCCONACHIE, Auteur ; Ann LE COUTEUR, Auteur . - p.24-30. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 20 (December 2015) . - p.24-30 Mots-clés : Broader Autism Phenotype  Child progress  Parent–child interaction  Early intervention Index. décimale : PER Périodiques Résumé : Parents of children with ASD may show ASD type behaviours including particular social communication interaction styles—the Broader Autism Phenotype (BAP). Understanding the potential impact of defined parent characteristics may be relevant when designing and evaluating the efficacy and effectiveness of parent-mediated interventions. In this proof of principle analysis, 18 mothers who had taken part in an early parent-mediated intervention later completed Family History Interviews. Parent data were split into lower and higher BAP groups. There was a significant negative correlation between BAP factor total scores and mother–child interaction total and post-intervention change scores. Change in number of words understood was significantly greater in children of mothers scoring in the lower BAP group compared with children of mothers in the higher BAP group. These preliminary findings provide some support for further investigation of parent BAP status as a potential moderator of the impact of early parent-mediated psychosocial interventions. En ligne : http://dx.doi.org/10.1016/j.rasd.2015.07.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=270

Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review / Sarah WIGHAM in Autism, 23-2 (February 2019)  

Public ISBD [article]  inAutism > 23-2 (February 2019) . - p.287-305 Titre : Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review Type de document : texte imprimé Auteurs : Sarah WIGHAM, Auteur ; Jacqui RODGERS, Auteur ; Tom BERNEY, Auteur ; Ann LE COUTEUR, Auteur ; Barry INGHAM, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.287-305 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  diagnosis  review  screening Index. décimale : PER Périodiques Résumé : Accurately diagnosing autism spectrum disorders in adulthood can be challenging. Structured questionnaires and diagnostic measures are frequently used to assist case recognition and diagnosis. This study reviewed research evidence on structured questionnaires and diagnostic measures published since the National Institute for Health and Care Excellence evidence update. The Cochrane library, Medline, Embase and PsycINFO were searched. In all, 20 studies met inclusion criteria. Sensitivity and specificity of structured questionnaires were best for individuals with previously confirmed autism spectrum disorder diagnoses and reduced in participants referred for diagnostic assessments, with discrimination of autism spectrum disorder from mental health conditions especially limited. For adults with intellectual disability, diagnostic accuracy increased when a combination of structured questionnaires were used. Evidence suggests some utility of diagnostic measures in identifying autism spectrum disorder among clinic referrals, although specificity for diagnosis was relatively low. In mental health settings, the use of a single structured questionnaire is unlikely to accurately identify adults without autism spectrum disorder or differentiate autism spectrum disorder from mental health conditions. This is important as adults seeking an autism spectrum disorder diagnostic assessment are likely to have co-existing mental health conditions. Robust autism spectrum disorder assessment tools specifically for use in adult diagnostic health services in the presence of co-occurring mental health and neurodevelopmental disorders are a research priority. En ligne : http://dx.doi.org/10.1177/1362361317748245 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=383 [article] Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review [texte imprimé] / Sarah WIGHAM, Auteur ; Jacqui RODGERS, Auteur ; Tom BERNEY, Auteur ; Ann LE COUTEUR, Auteur ; Barry INGHAM, Auteur ; Jeremy R. PARR, Auteur . - p.287-305. Langues : Anglais (eng) in Autism > 23-2 (February 2019) . - p.287-305 Mots-clés : autism spectrum disorders  diagnosis  review  screening Index. décimale : PER Périodiques Résumé : Accurately diagnosing autism spectrum disorders in adulthood can be challenging. Structured questionnaires and diagnostic measures are frequently used to assist case recognition and diagnosis. This study reviewed research evidence on structured questionnaires and diagnostic measures published since the National Institute for Health and Care Excellence evidence update. The Cochrane library, Medline, Embase and PsycINFO were searched. In all, 20 studies met inclusion criteria. Sensitivity and specificity of structured questionnaires were best for individuals with previously confirmed autism spectrum disorder diagnoses and reduced in participants referred for diagnostic assessments, with discrimination of autism spectrum disorder from mental health conditions especially limited. For adults with intellectual disability, diagnostic accuracy increased when a combination of structured questionnaires were used. Evidence suggests some utility of diagnostic measures in identifying autism spectrum disorder among clinic referrals, although specificity for diagnosis was relatively low. In mental health settings, the use of a single structured questionnaire is unlikely to accurately identify adults without autism spectrum disorder or differentiate autism spectrum disorder from mental health conditions. This is important as adults seeking an autism spectrum disorder diagnostic assessment are likely to have co-existing mental health conditions. Robust autism spectrum disorder assessment tools specifically for use in adult diagnostic health services in the presence of co-occurring mental health and neurodevelopmental disorders are a research priority. En ligne : http://dx.doi.org/10.1177/1362361317748245 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=383

A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults / Sarah WIGHAM in Autism, 26-8 (November 2022)  

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The Interplay Between Sensory Processing Abnormalities, Intolerance of Uncertainty, Anxiety and Restricted and Repetitive Behaviours in Autism Spectrum Disorder / Sarah WIGHAM in Journal of Autism and Developmental Disorders, 45-4 (April 2015)  

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