"I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults / Brenna B MADDOX in Autism, 24-4 (May 2020)  

Public ISBD [article]  inAutism > 24-4 (May 2020) . - p.919-930 Titre : "I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Brenna B MADDOX, Auteur ; Samantha CRABBE, Auteur ; Rinad S. BEIDAS, Auteur ; Lauren BROOKMAN-FRAZEE, Auteur ; Carolyn C. CANNUSCIO, Auteur ; Judith S. MILLER, Auteur ; Christina NICOLAIDIS, Auteur ; David S MANDELL, Auteur Article en page(s) : p.919-930 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorder  community mental health  qualitative methods  training Index. décimale : PER Périodiques Résumé : Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians' limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options. En ligne : http://dx.doi.org/10.1177/1362361319882227 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425 [article] "I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults [Texte imprimé et/ou numérique] / Brenna B MADDOX, Auteur ; Samantha CRABBE, Auteur ; Rinad S. BEIDAS, Auteur ; Lauren BROOKMAN-FRAZEE, Auteur ; Carolyn C. CANNUSCIO, Auteur ; Judith S. MILLER, Auteur ; Christina NICOLAIDIS, Auteur ; David S MANDELL, Auteur . - p.919-930. Langues : Anglais (eng) in Autism > 24-4 (May 2020) . - p.919-930 Mots-clés : adults  autism spectrum disorder  community mental health  qualitative methods  training Index. décimale : PER Périodiques Résumé : Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians' limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options. En ligne : http://dx.doi.org/10.1177/1362361319882227 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=425

A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum / Laura GRAHAM HOLMES in Autism Research, 13-6 (June 2020)  

Public ISBD [article]  inAutism Research > 13-6 (June 2020) . - p.970-987 Titre : A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum Type de document : Texte imprimé et/ou numérique Auteurs : Laura GRAHAM HOLMES, Auteur ; Casey J. ZAMPELLA, Auteur ; Caitlin C. CLEMENTS, Auteur ; Joseph P. MCCLEERY, Auteur ; Brenna B MADDOX, Auteur ; Julia PARISH-MORRIS, Auteur ; Manisha D. UDHNANI, Auteur ; Robert T. SCHULTZ, Auteur ; Judith S. MILLER, Auteur Article en page(s) : p.970-987 Langues : Anglais (eng) Mots-clés : adults  life course  life span/lifespan  patient-reported outcomes  quality of life  sex/gender  women with autism Index. décimale : PER Périodiques Résumé : Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N =?912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys. En ligne : http://dx.doi.org/10.1002/aur.2275 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427 [article] A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum [Texte imprimé et/ou numérique] / Laura GRAHAM HOLMES, Auteur ; Casey J. ZAMPELLA, Auteur ; Caitlin C. CLEMENTS, Auteur ; Joseph P. MCCLEERY, Auteur ; Brenna B MADDOX, Auteur ; Julia PARISH-MORRIS, Auteur ; Manisha D. UDHNANI, Auteur ; Robert T. SCHULTZ, Auteur ; Judith S. MILLER, Auteur . - p.970-987. Langues : Anglais (eng) in Autism Research > 13-6 (June 2020) . - p.970-987 Mots-clés : adults  life course  life span/lifespan  patient-reported outcomes  quality of life  sex/gender  women with autism Index. décimale : PER Périodiques Résumé : Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N =?912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys. En ligne : http://dx.doi.org/10.1002/aur.2275 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427

Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults / Shari JAGER-HYMAN in Journal of Autism and Developmental Disorders, 50-10 (October 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-10 (October 2020) . - p.3450-3461 Titre : Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults Type de document : Texte imprimé et/ou numérique Auteurs : Shari JAGER-HYMAN, Auteur ; Brenna B MADDOX, Auteur ; Samantha R. CRABBE, Auteur ; David S MANDELL, Auteur Article en page(s) : p.3450-3461 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Safety planning intervention  Screening  Suicide Index. décimale : PER Périodiques Résumé : Autistic individuals experience elevated risk for suicide ideation, attempts, and deaths. Little is known about how clinicians assess risk or intervene with suicidal autistic individuals. We surveyed 121 clinicians about use of suicide prevention practices with autistic and non-autistic clients. Clinicians reported greater self-efficacy in screening for suicide risk among non-autistic clients (p?=?0.01). There were no statistically significant differences in whether they used standardized screening measures or in their reported normative pressure or attitudes towards screening. Clinicians reported similar rates of use of Safety Planning, an evidence-based suicide-prevention strategy, across groups, but greater acceptability for non-autistic clients (p? En ligne : http://dx.doi.org/10.1007/s10803-020-04441-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=432 [article] Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults [Texte imprimé et/ou numérique] / Shari JAGER-HYMAN, Auteur ; Brenna B MADDOX, Auteur ; Samantha R. CRABBE, Auteur ; David S MANDELL, Auteur . - p.3450-3461. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-10 (October 2020) . - p.3450-3461 Mots-clés : Autism spectrum disorder  Safety planning intervention  Screening  Suicide Index. décimale : PER Périodiques Résumé : Autistic individuals experience elevated risk for suicide ideation, attempts, and deaths. Little is known about how clinicians assess risk or intervene with suicidal autistic individuals. We surveyed 121 clinicians about use of suicide prevention practices with autistic and non-autistic clients. Clinicians reported greater self-efficacy in screening for suicide risk among non-autistic clients (p?=?0.01). There were no statistically significant differences in whether they used standardized screening measures or in their reported normative pressure or attitudes towards screening. Clinicians reported similar rates of use of Safety Planning, an evidence-based suicide-prevention strategy, across groups, but greater acceptability for non-autistic clients (p? En ligne : http://dx.doi.org/10.1007/s10803-020-04441-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=432

Reliability and validity of the Pediatric Anxiety Rating Scale modified for autism spectrum disorder / Brenna B MADDOX in Autism, 24-7 (October 2020)  

Public ISBD [article]  inAutism > 24-7 (October 2020) . - p.1773-1782 Titre : Reliability and validity of the Pediatric Anxiety Rating Scale modified for autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Brenna B MADDOX, Auteur ; Luc LECAVALIER, Auteur ; Judith S. MILLER, Auteur ; Jill PRITCHETT, Auteur ; Jill HOLLWAY, Auteur ; Susan W. WHITE, Auteur ; Scott GILLESPIE, Auteur ; Andrea Nichole EVANS, Auteur ; Robert T. SCHULTZ, Auteur ; John D. HERRINGTON, Auteur ; Karen E. BEARSS, Auteur ; Lawrence SCAHILL, Auteur Article en page(s) : p.1773-1782 Langues : Anglais (eng) Mots-clés : *Pediatric Anxiety Rating Scale  *anxiety  *assessment  *autism spectrum disorder  *reliability  *validity Index. décimale : PER Périodiques Résumé : Many youth with autism spectrum disorder have anxiety, but it can be difficult to assess anxiety with existing measures. We modified the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder and tested the new measure in a group of 116 youth (age: 5-17?years) with autism spectrum disorder. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is an interview that a clinician usually completes with the child and parent together. We modified the interview questions and scoring instructions based on feedback from parents of children with autism spectrum disorder and from a panel of experts in autism spectrum disorder and anxiety. Unlike many other anxiety measures, the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder relies less on a child's verbal expression of anxiety and more on signs that a parent can easily observe. Training clinicians to administer and score the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was uncomplicated, and raters showed excellent agreement on video-recorded interviews. Youth who were not currently in treatment for anxiety had stable Pediatric Anxiety Rating Scale for youth with autism spectrum disorder scores with repeat measurement over a 1-month period. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is a useful clinician-rated measure of anxiety in youth with autism spectrum disorder and fills a gap for assessing anxiety in this population. En ligne : http://dx.doi.org/10.1177/1362361320922682 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431 [article] Reliability and validity of the Pediatric Anxiety Rating Scale modified for autism spectrum disorder [Texte imprimé et/ou numérique] / Brenna B MADDOX, Auteur ; Luc LECAVALIER, Auteur ; Judith S. MILLER, Auteur ; Jill PRITCHETT, Auteur ; Jill HOLLWAY, Auteur ; Susan W. WHITE, Auteur ; Scott GILLESPIE, Auteur ; Andrea Nichole EVANS, Auteur ; Robert T. SCHULTZ, Auteur ; John D. HERRINGTON, Auteur ; Karen E. BEARSS, Auteur ; Lawrence SCAHILL, Auteur . - p.1773-1782. Langues : Anglais (eng) in Autism > 24-7 (October 2020) . - p.1773-1782 Mots-clés : *Pediatric Anxiety Rating Scale  *anxiety  *assessment  *autism spectrum disorder  *reliability  *validity Index. décimale : PER Périodiques Résumé : Many youth with autism spectrum disorder have anxiety, but it can be difficult to assess anxiety with existing measures. We modified the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder and tested the new measure in a group of 116 youth (age: 5-17?years) with autism spectrum disorder. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is an interview that a clinician usually completes with the child and parent together. We modified the interview questions and scoring instructions based on feedback from parents of children with autism spectrum disorder and from a panel of experts in autism spectrum disorder and anxiety. Unlike many other anxiety measures, the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder relies less on a child's verbal expression of anxiety and more on signs that a parent can easily observe. Training clinicians to administer and score the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was uncomplicated, and raters showed excellent agreement on video-recorded interviews. Youth who were not currently in treatment for anxiety had stable Pediatric Anxiety Rating Scale for youth with autism spectrum disorder scores with repeat measurement over a 1-month period. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is a useful clinician-rated measure of anxiety in youth with autism spectrum disorder and fills a gap for assessing anxiety in this population. En ligne : http://dx.doi.org/10.1177/1362361320922682 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=431

Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder / Brenna B MADDOX in Autism, 21-4 (May 2017)  

Public ISBD [article]  inAutism > 21-4 (May 2017) . - p.412-422 Titre : Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Brenna B MADDOX, Auteur ; Andrea TRUBANOVA, Auteur ; Susan W. WHITE, Auteur Article en page(s) : p.412-422 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  depression  emotion dysregulation  non-suicidal self-injury Index. décimale : PER Périodiques Résumé : Recent studies have examined non-suicidal self-injury in community and clinical samples, but there is no published research on non-suicidal self-injury in individuals with autism spectrum disorder. This lack of research is surprising, since individuals with autism spectrum disorder have high rates of risk factors for non-suicidal self-injury, including depression and poor emotion regulation skills. Using an online survey, we examined non-suicidal self-injury methods, frequency, severity, functions, and initial motivations in adults with autism spectrum disorder (n?=?42). We also compared their non-suicidal self-injury characteristics to those of a gender-matched group of adults without autism spectrum disorder (n?=?42). Of the participants with autism spectrum disorder, 50% reported a history of non-suicidal self-injury. This proportion is higher than non-suicidal self-injury rates previously reported for college students, adult community samples, and adolescents with autism spectrum disorder, which suggests that adults with autism spectrum disorder have increased risk for engaging in non-suicidal self-injury. Women with autism spectrum disorder were significantly more likely to endorse non-suicidal self-injury, relative to men with autism spectrum disorder. A history of non-suicidal self-injury was not related to current depression or emotion dysregulation for the participants with autism spectrum disorder. Non-suicidal self-injury characteristics among the adults with autism spectrum disorder were similar to non-suicidal self-injury in adults without autism spectrum disorder. These preliminary findings highlight the need for increased awareness and further research about non-suicidal self-injury within autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361316644731 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder [Texte imprimé et/ou numérique] / Brenna B MADDOX, Auteur ; Andrea TRUBANOVA, Auteur ; Susan W. WHITE, Auteur . - p.412-422. Langues : Anglais (eng) in Autism > 21-4 (May 2017) . - p.412-422 Mots-clés : adults  autism spectrum disorders  depression  emotion dysregulation  non-suicidal self-injury Index. décimale : PER Périodiques Résumé : Recent studies have examined non-suicidal self-injury in community and clinical samples, but there is no published research on non-suicidal self-injury in individuals with autism spectrum disorder. This lack of research is surprising, since individuals with autism spectrum disorder have high rates of risk factors for non-suicidal self-injury, including depression and poor emotion regulation skills. Using an online survey, we examined non-suicidal self-injury methods, frequency, severity, functions, and initial motivations in adults with autism spectrum disorder (n?=?42). We also compared their non-suicidal self-injury characteristics to those of a gender-matched group of adults without autism spectrum disorder (n?=?42). Of the participants with autism spectrum disorder, 50% reported a history of non-suicidal self-injury. This proportion is higher than non-suicidal self-injury rates previously reported for college students, adult community samples, and adolescents with autism spectrum disorder, which suggests that adults with autism spectrum disorder have increased risk for engaging in non-suicidal self-injury. Women with autism spectrum disorder were significantly more likely to endorse non-suicidal self-injury, relative to men with autism spectrum disorder. A history of non-suicidal self-injury was not related to current depression or emotion dysregulation for the participants with autism spectrum disorder. Non-suicidal self-injury characteristics among the adults with autism spectrum disorder were similar to non-suicidal self-injury in adults without autism spectrum disorder. These preliminary findings highlight the need for increased awareness and further research about non-suicidal self-injury within autism spectrum disorder. En ligne : http://dx.doi.org/10.1177/1362361316644731 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

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