Autism in Adulthood - 1-1 - Mars 2019

dimanche 24 mars 2019

1. Christina N. Autism in Adulthood : The New Home for Our Emerging Field. Autism in Adulthood. 2019 ; 1(1) : 1-3.

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2. Moderator : NC, Participants : MD, J. SN, Elizabeth S, Melanie Y. An Expert Discussion on Autism and Empathy. Autism in Adulthood. 2019 ; 1(1) : 4-11.

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3. Lory B. For the Love of Science ?. Autism in Adulthood. 2018 ; 1(1) : 12-4.

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4. Maddox BB, Gaus VL. Community Mental Health Services for Autistic Adults : Good News and Bad News. Autism in Adulthood. 2018 ; 1(1) : 15-9.

Abstract Many autistic adults experience psychiatric conditions such as anxiety and depression. However, autistic adults often do not receive effective and affordable mental health (MH) treatment. Untreated psychiatric conditions in autistic adults are associated with a host of negative outcomes, including adaptive functioning impairments, difficulties with employment and independent living, and poor quality of life. The purpose of this Perspectives piece is to shed light on the current state of community MH services in the United States for autistic adults with co-occurring psychiatric conditions. Drawing on the available research and clinical experiences, we aim to (1) highlight positive developments in community mental health care for autistic adults ; (2) summarize the barriers that continue to exist for autistic adults in need of MH services ; and (3) provide recommendations for autistic adults and their families, community MH clinicians, and MH systems administrators to consider. Significant work is needed to provide autistic adults with affordable quality MH services. This Perspectives piece presents a summary of the needed changes and specific methods to continue to improve community MH services for autistic adults. Lay Summary Many autistic adults experience mental health problems, such as anxiety and depression. However, autistic adults and their families often do not know where to turn for effective and affordable mental health treatment. The purpose of this Perspectives piece is to (1) highlight positive developments in community mental health care for autistic adults ; (2) summarize the barriers that continue to exist for autistic adults in need of mental health services ; and (3) provide recommendations for autistic adults and their families, community mental health clinicians, and mental health systems administrators to consider. Recommendations for autistic adults and their families include joining autism-related support and advocacy networks, looking for word-of-mouth referrals from peers who have had success with local mental health providers, and searching for therapists who have the core skills needed to treat the presenting problem at hand, even if they are not experts in autism per se. Recommendations for clinicians focus on the importance of adopting the same individualized approach they would use for any of their clients without autism. Recommendations for systems administrators include improving communication between the developmental disabilities and mental health systems, adding more courses and practicum experiences related to autistic adults in the required general training for physicians, psychologists, and social workers, and offering trainings to clinicians that focus on the treatment of mental health problems in autistic adults.
Many autistic adults experience psychiatric conditions such as anxiety and depression. However, autistic adults often do not receive effective and affordable mental health (MH) treatment. Untreated psychiatric conditions in autistic adults are associated with a host of negative outcomes, including adaptive functioning impairments, difficulties with employment and independent living, and poor quality of life. The purpose of this Perspectives piece is to shed light on the current state of community MH services in the United States for autistic adults with co-occurring psychiatric conditions. Drawing on the available research and clinical experiences, we aim to (1) highlight positive developments in community mental health care for autistic adults ; (2) summarize the barriers that continue to exist for autistic adults in need of MH services ; and (3) provide recommendations for autistic adults and their families, community MH clinicians, and MH systems administrators to consider. Significant work is needed to provide autistic adults with affordable quality MH services. This Perspectives piece presents a summary of the needed changes and specific methods to continue to improve community MH services for autistic adults. Lay Summary Many autistic adults experience mental health problems, such as anxiety and depression. However, autistic adults and their families often do not know where to turn for effective and affordable mental health treatment. The purpose of this Perspectives piece is to (1) highlight positive developments in community mental health care for autistic adults ; (2) summarize the barriers that continue to exist for autistic adults in need of mental health services ; and (3) provide recommendations for autistic adults and their families, community mental health clinicians, and mental health systems administrators to consider. Recommendations for autistic adults and their families include joining autism-related support and advocacy networks, looking for word-of-mouth referrals from peers who have had success with local mental health providers, and searching for therapists who have the core skills needed to treat the presenting problem at hand, even if they are not experts in autism per se. Recommendations for clinicians focus on the importance of adopting the same individualized approach they would use for any of their clients without autism. Recommendations for systems administrators include improving communication between the developmental disabilities and mental health systems, adding more courses and practicum experiences related to autistic adults in the required general training for physicians, psychologists, and social workers, and offering trainings to clinicians that focus on the treatment of mental health problems in autistic adults.

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5. Warner G, Parr JR, Cusack J. Workshop Report : Establishing Priority Research Areas to Improve the Physical Health and Well-Being of Autistic Adults and Older People. Autism in Adulthood. 2018 ; 1(1) : 20-6.

Abstract Many serious medical conditions are more common in autistic adults than the general population. Yet, improving the physical health and well-being of autistic adults has not been a significant research focus to date. In collaboration with Newcastle University (the United Kingdom), Autistica (the United Kingdom’s autism research charity) hosted a workshop bringing together autistic people, relatives, clinicians, managers, clinical commissioners, international researchers, and funders to establish priority research areas and catalyze research to improve the physical health and well-being of autistic people. This article provides an overview of the design and methods used at the workshop to maximize collaborative working, and summarizes the 11 priority research concepts that emerged. Lay Summary Many serious medical conditions are more common in autistic adults than in the general population. Yet, improving the physical health and well-being of autistic adults has not been a significant research focus to date. Autistica (the autism research charity in the United Kingdom [UK]) and clinical researchers from Newcastle University (the UK) identified a need to establish priority research areas and encourage research to improve the physical health and well-being of autistic people. To achieve this aim, both parties cohosted a workshop that brought together autistic people, relatives, clinicians, managers, clinical commissioners, international researchers, and funders from Europe, Australia, and the United States. Thirty-nine people attended the 2-day workshop, which was held at a venue with an appropriate environment for autistic people. Eleven research concepts that might be used to improve the physical health and well-being of autistic people were identified : 1.Tailoring of existing measures of pain to better suit autistic people. 2.An international collaborative effort to agree a core set of demographic, health behavior and health outcome indicators most relevant to autistic people that can be compared with general population data. 3.Investigation of health care self-advocacy strategies and potential barriers to effective health care self-advocacy for autistic people. 4.Development of a tool to improve understanding of how factors influence personal well-being for autistic people. 5.A review of evidence on autism-specific health service accommodations and service design to inform what an autism-friendly health service looks like. 6.Adaptation of an online health care ?toolkit ? developed in the United States to facilitate the primary health care of autistic adults for use in the UK. 7.Development and evaluation of a personalized annual health check program for autistic people. 8.Evaluation of the types of cardiovascular and gut problems most prominent in older autistic adults, contributory factors, and treatment effectiveness. 9.Engagement with autistic people regarding opportunities to use knowledge about genetics and biology to improve health and well-being. 10.Exploration of the research priorities regarding sexual development and health in autism. 11.Investigation of autistic people’s use and experiences of residential facilities for older people. The research concepts require further refinement and development. Measuring the impact of the workshop against the primary aim of encouraging research to improve the physical health and well-being of autistic people will take some years. Should one or more projects lead to new knowledge and services that improve the health and well-being of autistic adults and older people, the workshop will have been a success.
Many serious medical conditions are more common in autistic adults than the general population. Yet, improving the physical health and well-being of autistic adults has not been a significant research focus to date. In collaboration with Newcastle University (the United Kingdom), Autistica (the United Kingdom’s autism research charity) hosted a workshop bringing together autistic people, relatives, clinicians, managers, clinical commissioners, international researchers, and funders to establish priority research areas and catalyze research to improve the physical health and well-being of autistic people. This article provides an overview of the design and methods used at the workshop to maximize collaborative working, and summarizes the 11 priority research concepts that emerged. Lay Summary Many serious medical conditions are more common in autistic adults than in the general population. Yet, improving the physical health and well-being of autistic adults has not been a significant research focus to date. Autistica (the autism research charity in the United Kingdom [UK]) and clinical researchers from Newcastle University (the UK) identified a need to establish priority research areas and encourage research to improve the physical health and well-being of autistic people. To achieve this aim, both parties cohosted a workshop that brought together autistic people, relatives, clinicians, managers, clinical commissioners, international researchers, and funders from Europe, Australia, and the United States. Thirty-nine people attended the 2-day workshop, which was held at a venue with an appropriate environment for autistic people. Eleven research concepts that might be used to improve the physical health and well-being of autistic people were identified : 1.Tailoring of existing measures of pain to better suit autistic people. 2.An international collaborative effort to agree a core set of demographic, health behavior and health outcome indicators most relevant to autistic people that can be compared with general population data. 3.Investigation of health care self-advocacy strategies and potential barriers to effective health care self-advocacy for autistic people. 4.Development of a tool to improve understanding of how factors influence personal well-being for autistic people. 5.A review of evidence on autism-specific health service accommodations and service design to inform what an autism-friendly health service looks like. 6.Adaptation of an online health care ?toolkit ? developed in the United States to facilitate the primary health care of autistic adults for use in the UK. 7.Development and evaluation of a personalized annual health check program for autistic people. 8.Evaluation of the types of cardiovascular and gut problems most prominent in older autistic adults, contributory factors, and treatment effectiveness. 9.Engagement with autistic people regarding opportunities to use knowledge about genetics and biology to improve health and well-being. 10.Exploration of the research priorities regarding sexual development and health in autism. 11.Investigation of autistic people’s use and experiences of residential facilities for older people. The research concepts require further refinement and development. Measuring the impact of the workshop against the primary aim of encouraging research to improve the physical health and well-being of autistic people will take some years. Should one or more projects lead to new knowledge and services that improve the health and well-being of autistic adults and older people, the workshop will have been a success.

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6. Zerbo O, Qian Y, Ray T, Sidney S, Rich S, Massolo M, Croen LA. Health Care Service Utilization and Cost Among Adults with Autism Spectrum Disorders in a U.S. Integrated Health Care System. Autism in Adulthood. 2018 ; 1(1) : 27-36.

Abstract Objectives : To compare health care utilization patterns and cost among insured adults with autism spectrum disorder (ASD), adults with attention-deficit and hyperactivity disorder (ADHD), and adults with neither condition (general population [GP] controls). Method : We conducted a case ?control study among adults (≥18 years) who were members of Kaiser Permanente Northern California (KPNC) for at least 9 months each year from 2008 to 2012. Cases (N ?= ?1507) were adults with an ASD diagnosis (ICD-9-CM 299.0 ?299.8) recorded in the electronic medical record on at least two separate occasions by December 31, 2012. Two control groups, adults with ADHD (N ?= ?9042) defined by ICD-9-CM code 314 and GP (N ?= ?15,070), were randomly selected and frequency matched to cases on gender and age. Health care utilization and cost data were obtained from KPNC databases for the year 2012. Results : Compared with adults with ADHD, adults with ASD had significantly higher utilization of outpatient visits for primary care (74.2% vs. 66.6%), mental health (43.3% vs. 33.2%), and laboratory services (60.9% vs. 54.4%). Hospitalizations for ambulatory care sensitive diagnoses (5.4% vs. 2.3%) were less frequent overall but more common among adults with ASD than with ADHD. Group differences were larger comparing adults with ASD with GP controls. Gynecology visits and screening for cervical cancer were significantly less common among women with ASD than among women with ADHD (35% vs. 50%) or GP (35% vs. 49%). Total annual mean healthcare costs for adults with ASD were 20% higher than costs for adults with ADHD and double costs for GP. Conclusion : Adults with ASD had significantly higher rates of utilization across most health care service areas compared with adults with ADHD or GP ; however, women with ASD were significantly less likely to have gynecology visits and have screening for cervical cancer. Lay Summary We conducted a study among adults (≥18 years) who were members of Kaiser Permanente Northern California (KPNC) from 2008 to 2012. We compared how often people attended different types of health care and costs of health care among adults with autism spectrum disorder (ASD), adults with attention-deficit and hyperactivity disorder (ADHD), and adults with neither condition (general population [GP] controls). The study included 1507 adults with ASD, 9042 with ADHD but not ASD, and 15,070 GP controls with no ASD or ADHD. Health care and cost data were obtained from KPNC databases for the year 2012. The study found that adults with ASD used more outpatient visits for primary care, mental health, and laboratory services than adults with ADHD. Gynecology visits and screening for cervical cancer were less common among women with ASD than among women with ADHD or GP. Health care costs for adults with ASD were higher than costs for adults with ADHD and costs for GP. In conclusion, adults with ASD had higher rates of use of most health care service areas than adults with ADHD or GP ; however, women with ASD were less likely to have gynecology visits and have screening for cervical cancer.
Objectives : To compare health care utilization patterns and cost among insured adults with autism spectrum disorder (ASD), adults with attention-deficit and hyperactivity disorder (ADHD), and adults with neither condition (general population [GP] controls). Method : We conducted a case ?control study among adults (≥18 years) who were members of Kaiser Permanente Northern California (KPNC) for at least 9 months each year from 2008 to 2012. Cases (N ?= ?1507) were adults with an ASD diagnosis (ICD-9-CM 299.0 ?299.8) recorded in the electronic medical record on at least two separate occasions by December 31, 2012. Two control groups, adults with ADHD (N ?= ?9042) defined by ICD-9-CM code 314 and GP (N ?= ?15,070), were randomly selected and frequency matched to cases on gender and age. Health care utilization and cost data were obtained from KPNC databases for the year 2012. Results : Compared with adults with ADHD, adults with ASD had significantly higher utilization of outpatient visits for primary care (74.2% vs. 66.6%), mental health (43.3% vs. 33.2%), and laboratory services (60.9% vs. 54.4%). Hospitalizations for ambulatory care sensitive diagnoses (5.4% vs. 2.3%) were less frequent overall but more common among adults with ASD than with ADHD. Group differences were larger comparing adults with ASD with GP controls. Gynecology visits and screening for cervical cancer were significantly less common among women with ASD than among women with ADHD (35% vs. 50%) or GP (35% vs. 49%). Total annual mean healthcare costs for adults with ASD were 20% higher than costs for adults with ADHD and double costs for GP. Conclusion : Adults with ASD had significantly higher rates of utilization across most health care service areas compared with adults with ADHD or GP ; however, women with ASD were significantly less likely to have gynecology visits and have screening for cervical cancer. Lay Summary We conducted a study among adults (≥18 years) who were members of Kaiser Permanente Northern California (KPNC) from 2008 to 2012. We compared how often people attended different types of health care and costs of health care among adults with autism spectrum disorder (ASD), adults with attention-deficit and hyperactivity disorder (ADHD), and adults with neither condition (general population [GP] controls). The study included 1507 adults with ASD, 9042 with ADHD but not ASD, and 15,070 GP controls with no ASD or ADHD. Health care and cost data were obtained from KPNC databases for the year 2012. The study found that adults with ASD used more outpatient visits for primary care, mental health, and laboratory services than adults with ADHD. Gynecology visits and screening for cervical cancer were less common among women with ASD than among women with ADHD or GP. Health care costs for adults with ASD were higher than costs for adults with ADHD and costs for GP. In conclusion, adults with ASD had higher rates of use of most health care service areas than adults with ADHD or GP ; however, women with ASD were less likely to have gynecology visits and have screening for cervical cancer.

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7. Kirby AV, Schneider M, Diener M, Henderson J. “Who Is Going to Pay for the Wi-Fi ?” Exploring Adulthood from the Perspectives of Autistic Youth. Autism in Adulthood. 2018 ; 1(1) : 37-43.

Abstract Background : The transition to adulthood involves achievement of objective milestones, yet becoming an adult is also widely considered a subjective experience. Much of the extant research about autistic adulthood focuses on the objective aspects of adulthood, with little emphasis on the subjective experience of adulthood. There is lack of research incorporating the perspectives of autistic youth about preparation for becoming an adult. Methods : Using semistructured interviews with 27 autistic adolescents (12 ?17 years old), we examined youth considerations for adulthood. In a subset of the sample (n ?= ?8), we also examined youth perspectives on adulthood in general. The research team conducted qualitative thematic analysis with an inductive, iterative approach. Results : Adolescents considered a variety of factors when considering their plans and desires for adulthood, including their family connections, their own interests and abilities, characteristics of their future situations, and chronological progressions. When speaking about adulthood in general, participants discussed the importance of factors such as age/accomplishment and responsibility/maturity. Conclusions : This study confirms the appropriateness and importance of conversations with autistic youth about their own adult futures. Understanding how autistic youth understand and consider adulthood can help inform the development of improved supports and services during the transition to adulthood, and promote positive adulthood experiences. Lay Summary This article describes a research study that included interviews with 27 autistic adolescents (ages 12 ?17). During the interviews, the adolescents discussed their plans and desires for their adult lives. Research of this kind is important as it expands understanding of the perspectives of autistic individuals in the discussions about important aspects of their lives. Findings of the study suggested that autistic youth considered a variety of things when thinking about their adult lives including their family connections, their own interests and abilities, characteristics of their future situations, and chronological progressions. When asked about their perspectives on adulthood, participants discussed considerations such as age/accomplishment and responsibility/maturity. These results can help those who are developing services aimed at autistic youth preparing for adulthood. This study also confirms the appropriateness of having discussions with autistic youth about their futures.
Background : The transition to adulthood involves achievement of objective milestones, yet becoming an adult is also widely considered a subjective experience. Much of the extant research about autistic adulthood focuses on the objective aspects of adulthood, with little emphasis on the subjective experience of adulthood. There is lack of research incorporating the perspectives of autistic youth about preparation for becoming an adult. Methods : Using semistructured interviews with 27 autistic adolescents (12 ?17 years old), we examined youth considerations for adulthood. In a subset of the sample (n ?= ?8), we also examined youth perspectives on adulthood in general. The research team conducted qualitative thematic analysis with an inductive, iterative approach. Results : Adolescents considered a variety of factors when considering their plans and desires for adulthood, including their family connections, their own interests and abilities, characteristics of their future situations, and chronological progressions. When speaking about adulthood in general, participants discussed the importance of factors such as age/accomplishment and responsibility/maturity. Conclusions : This study confirms the appropriateness and importance of conversations with autistic youth about their own adult futures. Understanding how autistic youth understand and consider adulthood can help inform the development of improved supports and services during the transition to adulthood, and promote positive adulthood experiences. Lay Summary This article describes a research study that included interviews with 27 autistic adolescents (ages 12 ?17). During the interviews, the adolescents discussed their plans and desires for their adult lives. Research of this kind is important as it expands understanding of the perspectives of autistic individuals in the discussions about important aspects of their lives. Findings of the study suggested that autistic youth considered a variety of things when thinking about their adult lives including their family connections, their own interests and abilities, characteristics of their future situations, and chronological progressions. When asked about their perspectives on adulthood, participants discussed considerations such as age/accomplishment and responsibility/maturity. These results can help those who are developing services aimed at autistic youth preparing for adulthood. This study also confirms the appropriateness of having discussions with autistic youth about their futures.

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8. Sosnowy C, Silverman C, Shattuck P, Garfield T. Setbacks and Successes : How Young Adults on the Autism Spectrum Seek Friendship. Autism in Adulthood. 2018 ; 1(1) : 44-51.

Abstract Objective : To describe the perspectives of young adults on the autism spectrum about how they seek and make friends and explore the diverse ways that some develop satisfying friendships despite social difficulties. Methods : We conducted semistructured interviews with 20 young adults on the autism spectrum about their lives after high school. Although interviews covered a broad range of topics related to transition, the subject of friendship came up frequently throughout the interviews. We extracted data specifically related to friendship for this article and used an inductive approach derived from grounded theory to identify and examine concepts. Results : Participants had the most success in relationships in which their atypical behavior was normalized. Specifically, this occurred among friends who accepted and appreciated their social differences and through common interests where these differences were not a concern. In other relationships, participants felt that they were expected to adhere to social norms, but found it uncomfortable and/or were not sure how to act in some contexts. Therefore, finding friends who did not expect this was a welcome relief. Participants who were socially isolated wanted more opportunities to meet other people, such as organized social groups, but were not sure how to access these. Conclusion : Results suggest that friendship, although challenging, can be navigated successfully for some young adults on the autism spectrum. These findings have implications for supporting young adults in their efforts to make friends in ways that work best for them and for creating measures that more accurately reflect their perspectives and needs. Reframing the concept of friendship to include a wider array of experiences and perspectives, identifying successful strategies, and creating more accurate assessments could present a very different picture of friendship and contribute to better outcomes for this unique population. Lay Summary Background : Young adults on the autism spectrum often have difficulty making friends due to challenges with social communication. Nevertheless, some do enjoy friendships with their peers. The purpose of this article is to describe friendship seeking from the perspectives of young adults on the autism spectrum and explore the diverse ways that some develop satisfying friendships despite social difficulties. This information can be used to support young adults in their efforts to make friends by identifying the approaches and strategies that work best for them. About This Study : The information in this article comes from a study we conducted about the transition to adulthood for young adults. We interviewed 20 young adults about their life experiences in their late teens and 20s. Friendship was very important for most of them and they described their desires to have friends, their efforts to make friends, and the significant difficulties and frustrations they faced. They attributed these difficulties to being seen as different from others and too few opportunities to socialize. They had the most success by finding friends who accepted and appreciated their social differences. In these relationships, they did not have to worry about social norms the way they usually did. Several participants found it easier to relate to others on the spectrum and participated in organized social groups. Still others made friends around shared interests where their autism was not a primary concern. Overall, our interviews showed that young adults on the autism spectrum seek friends in a variety of ways. What This Information Tells Us : Researchers and service providers often conclude that friendship for people on the autism spectrum is lacking when compared with their typically developing peers. However, the experiences of some young adults can tell a story of difference rather than deficit. From this and other studies, it is clear that people on the autism spectrum may perceive friendship differently, have different priorities or goals for friendship, and have different ways of se king and experiencing friendship than their typical peers. If we broaden our ideas of friendship to be more inclusive, things might appear very differently. Even so, many young adults struggle to make friends. By understanding their experiences with friendship, identifying where they need help, and identifying strategies and approaches that might work best for them, we can better support their efforts.
Objective : To describe the perspectives of young adults on the autism spectrum about how they seek and make friends and explore the diverse ways that some develop satisfying friendships despite social difficulties. Methods : We conducted semistructured interviews with 20 young adults on the autism spectrum about their lives after high school. Although interviews covered a broad range of topics related to transition, the subject of friendship came up frequently throughout the interviews. We extracted data specifically related to friendship for this article and used an inductive approach derived from grounded theory to identify and examine concepts. Results : Participants had the most success in relationships in which their atypical behavior was normalized. Specifically, this occurred among friends who accepted and appreciated their social differences and through common interests where these differences were not a concern. In other relationships, participants felt that they were expected to adhere to social norms, but found it uncomfortable and/or were not sure how to act in some contexts. Therefore, finding friends who did not expect this was a welcome relief. Participants who were socially isolated wanted more opportunities to meet other people, such as organized social groups, but were not sure how to access these. Conclusion : Results suggest that friendship, although challenging, can be navigated successfully for some young adults on the autism spectrum. These findings have implications for supporting young adults in their efforts to make friends in ways that work best for them and for creating measures that more accurately reflect their perspectives and needs. Reframing the concept of friendship to include a wider array of experiences and perspectives, identifying successful strategies, and creating more accurate assessments could present a very different picture of friendship and contribute to better outcomes for this unique population. Lay Summary Background : Young adults on the autism spectrum often have difficulty making friends due to challenges with social communication. Nevertheless, some do enjoy friendships with their peers. The purpose of this article is to describe friendship seeking from the perspectives of young adults on the autism spectrum and explore the diverse ways that some develop satisfying friendships despite social difficulties. This information can be used to support young adults in their efforts to make friends by identifying the approaches and strategies that work best for them. About This Study : The information in this article comes from a study we conducted about the transition to adulthood for young adults. We interviewed 20 young adults about their life experiences in their late teens and 20s. Friendship was very important for most of them and they described their desires to have friends, their efforts to make friends, and the significant difficulties and frustrations they faced. They attributed these difficulties to being seen as different from others and too few opportunities to socialize. They had the most success by finding friends who accepted and appreciated their social differences. In these relationships, they did not have to worry about social norms the way they usually did. Several participants found it easier to relate to others on the spectrum and participated in organized social groups. Still others made friends around shared interests where their autism was not a primary concern. Overall, our interviews showed that young adults on the autism spectrum seek friends in a variety of ways. What This Information Tells Us : Researchers and service providers often conclude that friendship for people on the autism spectrum is lacking when compared with their typically developing peers. However, the experiences of some young adults can tell a story of difference rather than deficit. From this and other studies, it is clear that people on the autism spectrum may perceive friendship differently, have different priorities or goals for friendship, and have different ways of se king and experiencing friendship than their typical peers. If we broaden our ideas of friendship to be more inclusive, things might appear very differently. Even so, many young adults struggle to make friends. By understanding their experiences with friendship, identifying where they need help, and identifying strategies and approaches that might work best for them, we can better support their efforts.

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9. Kourti M, MacLeod A. “I Don’t Feel Like a Gender, I Feel Like Myself” : Autistic Individuals Raised as Girls Exploring Gender Identity. Autism in Adulthood. 2018 ; 1(1) : 52-9.

Abstract Background : This article addresses a gap in current research by considering perceptions of gender within autistic adults raised as girls. Methods : We report on an online focus group, in which 21 individuals who had been raised as girls discussed their gender identities. This discussion was part of a larger study, involving 43 participants from eight countries. We used an emancipatory approach wherein participants set their own agenda, thereby highlighting directly that gender identity was significant for them. The discussion was open for 2 weeks, after which the transcript was analyzed using Applied Thematic Analysis. Results : Participants reported not identifying with typical presentations of the female gender for a variety of reasons, linked both to autism and to sociocultural expectations. Participants described childhoods of being a tomboy or wanting to be a boy, having difficulties conforming to gender-based social expectations and powerful identifications with their personal interests. Conclusions : Consideration is given to the ways in which autistic individuals conform to, or resist, gendered roles, as well as the implications for identity formation within autistic individuals raised as girls. The innovative emancipatory design proved effective in giving voice to a group who have had little presence within the academic and medical communities and, through its use of online platforms, in engaging a large and internationally based participant sample. This article highlights both the importance of approaching autism from an intersectional perspective that takes greater account of context, and the unique contributions that autistic individuals can make to current understandings within autism research. Lay Summary Background : This article tries to look at a new part of autism research. It reports on what autistic adults who were raised as girls say about their feelings in relation to their gender ?whether they feel more like typical women, more like typical men, or feel differently to both. Method : The research used online discussion groups. Forty-three individuals who had been raised as girls chose to join the group and be part of the research. Participants from eight countries decided what they would talk about. This means that they chose the topic of gender identity as one that was important to them. We analyzed the comments that people made in the discussion about gender. Results : Most said that they did not feel like they were similar to typical women and they gave different reasons for this. Some thought it was because they were autistic and some thought it was to do with people around them putting pressure on them to be more ?girly.? Participants often said they had been tomboys or wanted to be a boy growing up and their personal interests were very important to them. Conclusions : The discussion looks at how autistic people are sometimes forced to act in certain ways to fit in, and how this can make them feel confused and depressed. The research design was led by the participants and this meant that a group who have rarely been asked their opinion were able to have a say. Because the research was all online, the participant group could be larger than usual and came from all over the world. This article shows that it is important to understand a person’s environment, to really understand how autism affects them. It also shows that autistic people can give important information that helps others understand them better, and the only way to get this type of information is to ask autistic people.
Background : This article addresses a gap in current research by considering perceptions of gender within autistic adults raised as girls. Methods : We report on an online focus group, in which 21 individuals who had been raised as girls discussed their gender identities. This discussion was part of a larger study, involving 43 participants from eight countries. We used an emancipatory approach wherein participants set their own agenda, thereby highlighting directly that gender identity was significant for them. The discussion was open for 2 weeks, after which the transcript was analyzed using Applied Thematic Analysis. Results : Participants reported not identifying with typical presentations of the female gender for a variety of reasons, linked both to autism and to sociocultural expectations. Participants described childhoods of being a tomboy or wanting to be a boy, having difficulties conforming to gender-based social expectations and powerful identifications with their personal interests. Conclusions : Consideration is given to the ways in which autistic individuals conform to, or resist, gendered roles, as well as the implications for identity formation within autistic individuals raised as girls. The innovative emancipatory design proved effective in giving voice to a group who have had little presence within the academic and medical communities and, through its use of online platforms, in engaging a large and internationally based participant sample. This article highlights both the importance of approaching autism from an intersectional perspective that takes greater account of context, and the unique contributions that autistic individuals can make to current understandings within autism research. Lay Summary Background : This article tries to look at a new part of autism research. It reports on what autistic adults who were raised as girls say about their feelings in relation to their gender ?whether they feel more like typical women, more like typical men, or feel differently to both. Method : The research used online discussion groups. Forty-three individuals who had been raised as girls chose to join the group and be part of the research. Participants from eight countries decided what they would talk about. This means that they chose the topic of gender identity as one that was important to them. We analyzed the comments that people made in the discussion about gender. Results : Most said that they did not feel like they were similar to typical women and they gave different reasons for this. Some thought it was because they were autistic and some thought it was to do with people around them putting pressure on them to be more ?girly.? Participants often said they had been tomboys or wanted to be a boy growing up and their personal interests were very important to them. Conclusions : The discussion looks at how autistic people are sometimes forced to act in certain ways to fit in, and how this can make them feel confused and depressed. The research design was led by the participants and this meant that a group who have rarely been asked their opinion were able to have a say. Because the research was all online, the participant group could be larger than usual and came from all over the world. This article shows that it is important to understand a person’s environment, to really understand how autism affects them. It also shows that autistic people can give important information that helps others understand them better, and the only way to get this type of information is to ask autistic people.

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10. Conner CM, Cramer RD, McGonigle JJ. Examining the Diagnostic Validity of Autism Measures Among Adults in an Outpatient Clinic Sample. Autism in Adulthood. 2019 ; 1(1) : 60-8.

Background : Previous research has questioned the validity of diagnostic measures for autism spectrum disorder (ASD) among adults. This study examined the correspondence between several measures and clinician diagnosis. Methods : We conducted a retrospective chart review for 93 adults (18 ?61 years ; 72% male) who received an ASD evaluation at a specialty outpatient clinic. Thirty-one individuals (33%) in the sample were diagnosed with ASD. We compared participant scores on the Autism Spectrum Quotient (AQ), the Ritvo Autism Asperger’s Diagnostic Scale-Revised (RAADS-R), and the Autism Diagnostic Observation Schedule (ADOS) to clinician diagnosis of ASD. We calculated sensitivity, specificity, and area under the curve (AUC) for each measure. Results : Participants diagnosed with ASD scored significantly higher, on average, on the ADOS than those who were not diagnosed with ASD, but not on the RAADS-R or AQ. The AUC was relatively low for each measure : ADOS ?= ?0.69 (95% confidence interval [CI] 0.58 ?0.81), RAADS-R ?= ?0.58 (95% CI 0.46 ?0.72), and AQ ?= ?0.40 (95% CI 0.28 ?0.52). Sensitivity and specificity of all three measures were in the poor to fair range. When dichotomized at the optimal cutoffs for this sample, the ADOS had a sensitivity of 0.65 and a specificity of 0.76 ; the RAADS-R had a sensitivity of 0.52 and a specificity of 0.73 ; and the AQ had a sensitivity of 0.45 and a specificity of 0.52. Conclusions : Results of the study suggest that clinicians should not rely solely on self-report measures or the ADOS when diagnosing adults on the spectrum. Further development of measures is needed, including self-report measures with higher diagnostic validity, that are sensitive across age, gender, and cognitive functioning, and that differentiate autism from psychiatric diagnoses. Lay Summary Why was this study done ? Diagnosing adults with autism spectrum disorder (ASD) is difficult. Other research has suggested that the few measures that exist for autistic adults may not be very effective for accurate diagnoses. We wanted to see how closely the results of commonly used ASD assessment tools compared with clinical diagnoses in a real-life outpatient setting. What did the researchers do ? This study looked at adults who went to an adult ASD outpatient clinic for an initial ASD diagnosis over 3 years. Of these 93 adults, one-third were diagnosed as autistic. As part of the evaluation, all participants completed two commonly used autism screening surveys ?the Autism Spectrum Quotient (AQ) and the Ritvo Autism Asperger’s Diagnostic Scale-Revised (RAADS-R) ?and took part in a semistructured diagnostic interview called the Autism Diagnostic Observation Schedule (ADOS). The clinicians also collected additional information and, when possible, spoke to family members before jointly making a diagnosis. The researchers compared how those diagnosed with ASD and those who were not diagnosed with ASD scored on the AQ, the RAADS-R, and the ADOS. What were the results of this study ? Although adults on the spectrum scored higher on average on the ADOS clinical interview than those who did not receive an autism diagnosis, they did not score higher on the AQ and RAADS-R self-report measures. All three of the measures were only moderately effective at showing who would be diagnosed with ASD and who was not. What do these findings add to what was already known ? These results confirm and expand on findings from other prior studies. The findings suggest that ASD diagnostic measures should not be used alone or considered the only source of information when making an initial autism diagnosis in adulthood. What are potential weaknesses in the study ? When studying the accuracy of diagnostic tests, it is best to compare the results of the tests being studied with an ?independent gold standard, ? that is, a test that we know is very good and that is totally separate from the tests being studied. In this case, there is no clear ?gold standard, ? so we had to compare the tests with the next best thing ?the clinicians’ final decision about whether or not a clien has a diagnosis of ASD. It is possible that the clinicians did not make the right diagnosis. Also, the diagnosis was not ?independent ? of the tests being studied, since the clinicians used the results of the tests to help make the diagnosis. Clinicians only diagnosed about one-third of adults in this study with ASD, whereas previous studies in community clinics have had a higher percentage of adults diagnosed ; this factor may have influenced the measures’ accuracy. Lastly, clinicians in this study did not assess clients for any other mental health conditions, which may have provided more information about the clients who were not diagnosed with ASD. How will these findings help autistic adults now or in the future ? The findings from this study suggest that none of these measures are very accurate on their own. Thus, we recommend multiple measures (interviews and questionnaires) should be used together when clinicians diagnose ASD in adulthood. Results of this study also suggest that measures for adults with ASD should be tested in real-world community clinics, so that clinicians and researchers see how the measures perform when used for initial diagnosis in adulthood.

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11. Kim SY, Bottema-Beutel K. Negotiation of Individual and Collective Identities in the Online Discourse of Autistic Adults. Autism in Adulthood. 2019 ; 1(1) : 69-78.

Background : Previous studies have shown an increasing preference for online communication within the autistic advocacy community. Yet, little is known about how online communication facilitates the formation of autistic identity. This qualitative study examined online autobiographical narratives about repetitive and restricted behaviors ?specifically ?stimming ??produced by autistic adults. The primary goal of this study was to investigate how the production of, and online interactions around, these narratives functioned as collaborative resources for empowered autistic identities. Methods : Nine blog posts were located that contained autobiographical narratives related to stimming and were analyzed using discourse analysis. Results : Analysis revealed that individual and collective identities were negotiated within narratives through : (1) situating the self in relation to other story characters and the reader in varying ways and (2) connecting the autistic community and solidifying collective ideologically aligned voices. Conclusions : Online blog spaces facilitated the emergence and construction of empowered individual and collective identities for autistic individuals. Future research should continue to focus on how autistic individuals form relationships, create advocacy communities, and cultivate empowered identities within online spaces. Lay Summary Why was this study done and what was the purpose of this study ? More autistic individuals are using the internet to communicate, and research has shown that online communication can benefit autistic individuals in various ways. However, there is a lack of understanding of how online communication is related to autistic identity. We examined how autistic bloggers’ stories about their stimming experiences contributed to individual and collective autistic identities. Stimming refers to repetitive body movements, movements of objects, and other repetitive and restricted behavior and is considered one of two core features of an autism diagnosis. Although some stakeholders such as educators or parents have tried to get rid of these repetitive movements because they believe that stimming is not an appropriate behavior, autistic and other neurodiversity advocates assert that stimming is beneficial for autistic individuals and is important for developing an autistic identity. What did we do ? We examined nine blog posts written by autistic bloggers using a method referred to as discourse analysis. In each blog post that we analyzed, the author shares their experiences about stimming. Discourse analysis is a method used to explore how people use language to build meaning, including the formation of social identities. Therefore, particular attention was paid to how the bloggers told the narrative (i.e., specific word choices to describe characters within the narrative and verb tense). What were the results and implications of the study ? We found that by sharing stories about their stimming experience in the context of blog posts, autistic individuals developed empowered individual and collective autistic identities and challenged dominant and neurotypical social norms. Also, within online space, autistic individuals formed social relationships and connections that contributed to a collective identity. More research on how autistic individuals develop supportive relationships and form advocacy communities within online spaces is needed to promote emotional well-being and overall quality of life in this population.

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