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BACKGROUND: The term "weaponized autism" is frequently used on extremist platforms. To better understand this, we conducted a discourse analysis of posts on Gab, an alt-right social media platform. METHODS: We analyzed 711 posts spanning 2018-2019 and filtered for variations on the term "weaponized autism". RESULTS: This term is used mainly by non-autistic Gab users. It refers to exploitation of perceived talents and vulnerabilities of "Weaponized autists", described as all-powerful masters-of-technology who are devoid of social skills. CONCLUSIONS: The term "weaponized autism" is simultaneously glorified and derogatory. For some autistic people, the partial acceptance offered within this community may be preferable to lack of acceptance offered in society, which speaks to improving societal acceptance as a prevention effort.
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Trastorno del Espectro Autista , Trastorno Autístico , Medios de Comunicación Sociales , Humanos , Habilidades SocialesRESUMEN
Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.
Why is this topic important?: Some people, especially older people, and those who can "mask" their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism. What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people. What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said. How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement. What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles. How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.
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At the 2019 strategic planning meeting the International Society for Autism Research (INSAR) board discussed the question of appropriate language to be used when speaking or writing about autism or affected individuals. Board members articulated a wide range of views on this subject, making clear that there is no single simple answer. This commentary was inspired by that discussion. It is by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism. Autism Res 2019, 12: 1004-1006. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: How should researchers talk about autism? Personal reflections on writing and speaking about autism, with particular regard for affected individuals, be they autistic people, people with autism, or family members. This commentary is authored by John Elder Robison who is both an INSAR board member and an individual diagnosed with autism.
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Recent studies of mortality, illness, and suicide among autistic adults paint an alarming picture. Autistic people appear to die much earlier than the general population, and they seem to be far more vulnerable to a surprising range of medical problems. Suicide and depression seem far more common than in the general population. If correct, that suggests an older autistic population in silent crisis, with few if any supports. If so, older autistic people should be a focus for public health and human service agencies. But is the picture complete? Autism researchers ask for answers, identifying problems and their scope. This article discusses the limitations of our adult autism knowledge, and the challenges we will face studying adults. Researching and ultimately serving older autistic adults presents a unique set of problems that have not yet been addressed by scientists or clinicians. Autism Res 2019, 12: 370-374 © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Public policy toward autistic people is driven by data. Most autism data to date have been derived from and about children, because autism tends to be identified and supported in the public school system. This has created a public perception of autism as a childhood problem. In fact, autism is a lifelong difference or disability, and recent studies suggest serious overlooked concerns for autistic adults. This commentary discusses how we have evaluated adult autism so far, limitations of our knowledge, and how we might evaluate adult needs going forward. The commentary makes a case for specific new adult prevalence and outcome studies to inform public policy.
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Trastorno del Espectro Autista/epidemiología , Estado de Salud , Anciano , Femenino , Humanos , Masculino , PrevalenciaRESUMEN
Autism spectrum disorder is associated with diverse social, educational, and occupational challenges. To date, no standardized, internationally accepted tools exist to assess autism spectrum disorder-related functioning. World Health Organization's International Classification of Functioning, Disability and Health can serve as foundation for developing such tools. This study aimed to identify a comprehensive, a common brief, and three age-appropriate brief autism spectrum disorder Core Sets. Four international preparatory studies yielded in total 164 second-level International Classification of Functioning, Disability and Health candidate categories. Based on this evidence, 20 international autism spectrum disorder experts applied an established iterative decision-making consensus process to select from the candidate categories the most relevant ones to constitute the autism spectrum disorder Core Sets. The consensus process generated 111 second-level International Classification of Functioning, Disability and Health categories in the Comprehensive Core Set for autism spectrum disorder-one body structure, 20 body functions, 59 activities and participation categories, and 31 environmental factors. The Common Brief Core Set comprised 60 categories, while the age-appropriate core sets included 73 categories in the preschool version (0- to 5-year-old children), 81 in the school-age version (6- to 16-year-old children and adolescents), and 79 in the older adolescent and adult version (⩾17-year-old individuals). The autism spectrum disorder Core Sets mark a milestone toward the standardized assessment of autism spectrum disorder-related functioning in educational, administrative, clinical, and research settings.
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Trastorno del Espectro Autista/fisiopatología , Trastorno del Espectro Autista/psicología , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud , Adolescente , Niño , Preescolar , Consenso , Humanos , Lactante , Organización Mundial de la SaludRESUMEN
BACKGROUND: Nephrogenic systemic fibrosis is a rare fibrosing condition that occurs in patients with renal insufficiency. While its histologic characteristics have been well described, the etiology and pathogenesis have not been fully characterized. Several recent studies support the theory that gadolinium-based contrast agents play a causative role in the development of the disease. Erythropoietin therapy and endothelial damage from surgical procedures have also been suggested as potential contributing factors. OBJECTIVE: This study attempts to help contribute to the understanding of this novel disorder. METHODS: We performed a retrospective chart review of 6 patients diagnosed with nephrogenic systemic fibrosis at our institution. Emphasis was placed on identification of potential putative etiologic agents including gadolinium, erythropoietin therapy, and previous surgical procedures. RESULTS: All patients had documented exposure to gadolinium-based contrast agents. Three of the 6 patients were treated with erythropoietin, and all patients underwent a previous surgical procedure. LIMITATIONS: This study is limited by its small size; therefore, the findings and results may not be applicable to all patients with this disorder. CONCLUSION: Our data suggest that gadolinium plays a primary role in nephrogenic systemic fibrosis and that prior surgery may be a contributory factor.
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Insuficiencia Renal/complicaciones , Enfermedades de la Piel/etiología , Adulto , Anciano , Medios de Contraste/efectos adversos , Eritropoyetina/efectos adversos , Femenino , Fibrosis , Gadolinio/efectos adversos , Humanos , Masculino , Persona de Mediana Edad , Diálisis Renal , Insuficiencia Renal/patología , Estudios Retrospectivos , Enfermedades de la Piel/patología , Procedimientos Quirúrgicos Operativos/efectos adversosRESUMEN
Scholars have long speculated about how Kanner and Asperger's descriptions of autistic behavior appeared just 1 year apart in America and Austria even as World War II had severed communication between the two countries. Both conspiracy and serendipity have been alleged, but a simpler explanation has now emerged. Autistic knowledge crossed the Atlantic with Georg Frankl-a previously unrecognized "man in the middle" who followed his fiancé to America. The evidence presented here fills in many blanks and suggests both Kanner and Asperger benefited from Frankl's insight. He was a guiding force for both men: unseen until now because he left very little in the way of published papers. To the end of their lives, Kanner and Asperger described their conditions as separate and distinct. Today, they are both part of the Autism Spectrum in Diagnostic and Statistical Manual of Mental Disorders (5th ed.). This article explains how and why Kanner and Asperger saw their descriptions as different. It makes the case that Georg Frankl helped both men see autism as we know it today and first saw the breadth of that continuum.
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Trastorno del Espectro Autista/historia , Austria , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/psicología , Manual Diagnóstico y Estadístico de los Trastornos Mentales , Historia del Siglo XX , Humanos , Teoría Psicológica , Estados UnidosRESUMEN
OBJECTIVE: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). METHODS: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. RESULTS: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). CONCLUSION: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD--both with respect to disability and exceptionality--and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD.
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Trastorno del Espectro Autista/diagnóstico , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud , Actividades Cotidianas , Adolescente , Niño , HumanosRESUMEN
Over the past few years, the study of genomics has embarked on developing gene expression-based classifications for tumors-an initiative that promises to revolutionize cancer medicine. High-throughput genomic platforms, such as microarray and SAGE, have found gene expression signatures that correlate to important clinical parameters used in current staging and are providing additional information that will improve standard of care. Although implementing a molecular taxonomy for prognosis and treatment would likely benefit cancer patients, there remain significant obstacles to using these assays within the current diagnostic framework. Since most genomic assays are being performed from fresh tissue, there is a need to either change the practice of formalin-fixing and paraffin-embedding tissue or adapting the assays for use on degraded RNA specimens. To date, even the most mature data sets, such as molecular classifications for breast cancer, still fall short of the number of patients needed to generalize the results to treating large populations. To implement these assays in large scale, there will need to be standardization of sample procurement, preparation, and analysis. Certainly, the greatest improvements in patient care will come through tailored therapies as genomics is coupled with clinical trials that randomize cohorts to different treatments. This manuscript reviews the current standards of care, presents progress that is being made in the development of genomic assays for breast cancer and discusses options for implementing these new tests into the clinical setting.
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Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/genética , Biomarcadores de Tumor/análisis , Neoplasias de la Mama/mortalidad , Femenino , Perfilación de la Expresión Génica , Regulación Neoplásica de la Expresión Génica , Genómica , Humanos , Análisis de Secuencia por Matrices de Oligonucleótidos , Valor Predictivo de las Pruebas , Reacción en Cadena de la Polimerasa de Transcriptasa Inversa , Tasa de SupervivenciaRESUMEN
Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project ("ICF(-CY)" from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span.
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Trastornos Generalizados del Desarrollo Infantil/clasificación , Trastornos Generalizados del Desarrollo Infantil/diagnóstico , Comparación Transcultural , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud/clasificación , Adolescente , Adulto , Niño , Trastornos Generalizados del Desarrollo Infantil/psicología , Consenso , Estudios Transversales , Grupos Focales , Humanos , Psicometría/estadística & datos numéricos , Investigación Cualitativa , Reproducibilidad de los Resultados , Suecia , Organización Mundial de la SaludRESUMEN
BACKGROUND: The early detection and characterization of metastatic melanoma are important for prognosis and management of the disease. Molecular methods are more sensitive in detecting occult lymph node metastases compared with standard histopathology and are reported to have utility in clinical diagnostics. METHODS: Using real-time quantitative reverse transcriptase-polymerase chain reaction ([q]RT-PCR), the authors examined 36 samples (30 melanomas, 4 benign nevi, and 2 reactive lymph nodes) for the expression of 20 melanoma-related genes that function in cell growth and differentiation (epidermal growth factor receptor [EGFR], WNT5A, BRAF, FOS, JUN, MATP, and TMP1), cell proliferation (KI-67, TOP2A, BUB1, BIRC5, and STK6), melanoma progression (CD63, MAGEA3, and GALGT), and melanin synthesis (TYR, MLANA, SILV, PAX3, and MITF). In addition, samples were tested for mutations in BRAF (exons 11 and 15) and NRAS (exons 2 and 3). RESULTS: Hierarchical clustering analysis of the expression data was able to distinguish between the melanoma and nonmelanoma samples and further stratified the melanoma samples into two groups differentiated by high expression of the genes involved in beta-catenin activation (EGFR and WNT5A) and the MAPK/ERK pathway (BRAF, FOS, and JUN). Eighteen of the 28 patients (64%) were found to have mutations in either exon 15 of BRAF (V599 substitution) or codon 61 of NRAS. The mutations were mutually exclusive and did not appear to be associated with the different expression subtypes. CONCLUSIONS: The results of the current study demonstrate that real-time qRT-PCR can be analyzed using hierarchical clustering to identify expression patterns that differentiate between melanomas and other tissue types. Using a supervised analysis of the data, the authors found that the best discriminators for molecularly distinguishing between melanoma, benign nevi, and lymph nodes were MLANA, CD63, and BUB1. These markers could have diagnostic utility for the detection of melanoma micrometastasis in sentinel lymph nodes.