The preprint is about how participatory research movement and neurodiversity movement can benefit... more The preprint is about how participatory research movement and neurodiversity movement can benefit the open scholarship movement and vice versa, leading to a more generalisable and accurate science of human behaviour and cognition.
Singer et al. (2022) argue that the current lexical shift within autism research towards more neu... more Singer et al. (2022) argue that the current lexical shift within autism research towards more neutral terminology hinders accurate scientific description of the wide range of autistic experiences, particularly within clinical and medical contexts. In this Letter to the Editor, we present an examination and criticism of these claims. This letter is authored and co-signed by a diverse group of autistic researchers, scholars, clinicians, and self-advocates with a wide range of clinical presentation and support needs, as well as non-autistic researchers, scholars, clinicians, and loved ones of autistic people.
Supplemental material, AUT830523_Lay_Abstract for The AASPIRE practice-based guidelines for the i... more Supplemental material, AUT830523_Lay_Abstract for The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants by Christina Nicolaidis, Dora Raymaker, Steven K Kapp, Amelia Baggs, E Ashkenazy, Katherine McDonald, Michael Weiner, Joelle Maslak, Morrigan Hunter and Andrea Joyce in Autism
adaptation, distribution and reproduction in any medium or format, as long as you give appropriat... more adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made. The images or other third party material in this book are included in the book's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the book's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.
Supports for the growing number of autistic university students often focus on helping them succe... more Supports for the growing number of autistic university students often focus on helping them succeed in university. However, even educated autistic people experience discrimination and other challenges which can make it very difficult for them to obtain meaningful jobs. Little remains known about how universities can better support their autistic students and alumni in overcoming barriers to meaningful employment. In this participatory study, a team of autistic and non-autistic researchers asked autistic (n = 92) and non-autistic (n = 774) university students about their career aspirations, strengths they believe will help them succeed in their “dream jobs,” and obstacles they expect to encounter. Autistic participants’ top goal in attending college was to improve their career prospects. However, relatively few autistic students reported learning career-specific skills at university. Autistic students were more likely to seek an academic job and less likely to seek a career in health...
United Kingdom A group of autistic people, police officers, and academics from across the United ... more United Kingdom A group of autistic people, police officers, and academics from across the United Kingdom have created resources, to help police officers support autistic people during the COVID-19 pandemic, and a clear visual guide to help autistic people interpret the new coronavirus regulations. https://www.nottingham.ac.uk/research/groups/autismandpolicing/ resources/index.aspx Thinking person's guide to autism United States Autism news and resources, including on COVID-19: from autistic people, professionals, and parents. www.thinkingautismguide.com CHIRP-LA United States ''Know Your Rights During COVID-19'' guide. www.chirpla.org/sites/chirpla.org/files/u107/Know%20Your%20 Rights%20during%20COVID-19%20%28Coronavirus%29.pdf Health Affairs United States Journal Blog: ''Health Justice Strategies to Protect Vulnerable Communities During COVID-19''
We argue that understanding of autism can be strengthened by increasing involvement of autistic i... more We argue that understanding of autism can be strengthened by increasing involvement of autistic individuals as researchers and by exploring cascading impacts of early sensory, perceptual, attentional, and motor atypicalities on social and communicative developmental trajectories. Participatory action research that includes diverse participants or researchers may help combat stigma while expanding research foci to better address autistic people's needs.
Autistic and non-autistic adults' agreement with scientific knowledge about autism, how they defi... more Autistic and non-autistic adults' agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.
An online survey compared the perceived benefits and preferred functions of computer-mediated com... more An online survey compared the perceived benefits and preferred functions of computer-mediated communication of participants with (N = 291) and without ASD (N = 311). Participants with autism spectrum disorder (ASD) perceived benefits of computer-mediated communication in terms of increased comprehension and control over communication, access to similar others, and the opportunity to express their true selves. They enjoyed using the Internet to meet others more, and to maintain connections with friends and family less, than did participants without ASD. People with ASD enjoyed aspects of computer-mediated communication that may be associated with special interests or advocacy, such as blogging, more than did participants without ASD. This study suggests that people with ASD may use the Internet in qualitatively different ways from those without ASD. Suggestions for interventions are discussed.
The neurodiversity movement challenges the medical model's interest in causation and cure, celebr... more The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N=657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that need no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.
Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a c... more Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students ( n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted...
OBJECTIVES In the United States, autistic individuals experience disproportionate physical and me... more OBJECTIVES In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.
Autistic Community and the Neurodiversity Movement, 2019
Defining the boundaries of autism has always been a complex task, shaped by a wide variety of sci... more Defining the boundaries of autism has always been a complex task, shaped by a wide variety of scientific, social, political, and economic factors. Those boundaries shape the lives of autistic people, influencing not only who gets diagnosed but often providing significant and important context to clinical decisions about service provision and "treatment" along with setting the stage for lifelong diagnostic and service disparities on the basis of gender, race, class, and age.
The preprint is about how participatory research movement and neurodiversity movement can benefit... more The preprint is about how participatory research movement and neurodiversity movement can benefit the open scholarship movement and vice versa, leading to a more generalisable and accurate science of human behaviour and cognition.
Singer et al. (2022) argue that the current lexical shift within autism research towards more neu... more Singer et al. (2022) argue that the current lexical shift within autism research towards more neutral terminology hinders accurate scientific description of the wide range of autistic experiences, particularly within clinical and medical contexts. In this Letter to the Editor, we present an examination and criticism of these claims. This letter is authored and co-signed by a diverse group of autistic researchers, scholars, clinicians, and self-advocates with a wide range of clinical presentation and support needs, as well as non-autistic researchers, scholars, clinicians, and loved ones of autistic people.
Supplemental material, AUT830523_Lay_Abstract for The AASPIRE practice-based guidelines for the i... more Supplemental material, AUT830523_Lay_Abstract for The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants by Christina Nicolaidis, Dora Raymaker, Steven K Kapp, Amelia Baggs, E Ashkenazy, Katherine McDonald, Michael Weiner, Joelle Maslak, Morrigan Hunter and Andrea Joyce in Autism
adaptation, distribution and reproduction in any medium or format, as long as you give appropriat... more adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license and indicate if changes were made. The images or other third party material in this book are included in the book's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the book's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.
Supports for the growing number of autistic university students often focus on helping them succe... more Supports for the growing number of autistic university students often focus on helping them succeed in university. However, even educated autistic people experience discrimination and other challenges which can make it very difficult for them to obtain meaningful jobs. Little remains known about how universities can better support their autistic students and alumni in overcoming barriers to meaningful employment. In this participatory study, a team of autistic and non-autistic researchers asked autistic (n = 92) and non-autistic (n = 774) university students about their career aspirations, strengths they believe will help them succeed in their “dream jobs,” and obstacles they expect to encounter. Autistic participants’ top goal in attending college was to improve their career prospects. However, relatively few autistic students reported learning career-specific skills at university. Autistic students were more likely to seek an academic job and less likely to seek a career in health...
United Kingdom A group of autistic people, police officers, and academics from across the United ... more United Kingdom A group of autistic people, police officers, and academics from across the United Kingdom have created resources, to help police officers support autistic people during the COVID-19 pandemic, and a clear visual guide to help autistic people interpret the new coronavirus regulations. https://www.nottingham.ac.uk/research/groups/autismandpolicing/ resources/index.aspx Thinking person's guide to autism United States Autism news and resources, including on COVID-19: from autistic people, professionals, and parents. www.thinkingautismguide.com CHIRP-LA United States ''Know Your Rights During COVID-19'' guide. www.chirpla.org/sites/chirpla.org/files/u107/Know%20Your%20 Rights%20during%20COVID-19%20%28Coronavirus%29.pdf Health Affairs United States Journal Blog: ''Health Justice Strategies to Protect Vulnerable Communities During COVID-19''
We argue that understanding of autism can be strengthened by increasing involvement of autistic i... more We argue that understanding of autism can be strengthened by increasing involvement of autistic individuals as researchers and by exploring cascading impacts of early sensory, perceptual, attentional, and motor atypicalities on social and communicative developmental trajectories. Participatory action research that includes diverse participants or researchers may help combat stigma while expanding research foci to better address autistic people's needs.
Autistic and non-autistic adults' agreement with scientific knowledge about autism, how they defi... more Autistic and non-autistic adults' agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.
An online survey compared the perceived benefits and preferred functions of computer-mediated com... more An online survey compared the perceived benefits and preferred functions of computer-mediated communication of participants with (N = 291) and without ASD (N = 311). Participants with autism spectrum disorder (ASD) perceived benefits of computer-mediated communication in terms of increased comprehension and control over communication, access to similar others, and the opportunity to express their true selves. They enjoyed using the Internet to meet others more, and to maintain connections with friends and family less, than did participants without ASD. People with ASD enjoyed aspects of computer-mediated communication that may be associated with special interests or advocacy, such as blogging, more than did participants without ASD. This study suggests that people with ASD may use the Internet in qualitatively different ways from those without ASD. Suggestions for interventions are discussed.
The neurodiversity movement challenges the medical model's interest in causation and cure, celebr... more The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N=657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that need no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.
Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a c... more Many autistic people do not learn they are autistic until adulthood. Parents may wait to tell a child they are autistic until they feel the child is “ready.” In this study, a participatory team of autistic and non-autistic researchers examined whether learning one is autistic at a younger age is associated with heightened well-being and Autism-Specific Quality of Life among autistic university students. Autistic students ( n = 78) completed an online survey. They shared when and how they learned they were autistic, how they felt about autism when first learning they are autistic and now, and when they would tell autistic children about their autism. Learning one is autistic earlier was associated with heightened quality of life and well-being in adulthood. However, learning one is autistic at an older age was associated with more positive emotions about autism when first learning one is autistic. Participants expressed both positive and negative emotions about autism and highlighted...
OBJECTIVES In the United States, autistic individuals experience disproportionate physical and me... more OBJECTIVES In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.
Autistic Community and the Neurodiversity Movement, 2019
Defining the boundaries of autism has always been a complex task, shaped by a wide variety of sci... more Defining the boundaries of autism has always been a complex task, shaped by a wide variety of scientific, social, political, and economic factors. Those boundaries shape the lives of autistic people, influencing not only who gets diagnosed but often providing significant and important context to clinical decisions about service provision and "treatment" along with setting the stage for lifelong diagnostic and service disparities on the basis of gender, race, class, and age.
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