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Developmental disability vs. neurodiverse identity: how cognitive lens affects the general public's perceptions of autism

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Abstract

Participants read a very brief educational message describing Autism Spectrum Disorder (ASD) as a developmental disability or neurodiverse identity. Participants who read the neurodiverse identity message were significantly more likely to endorse an entity/fixed mindset about autistic individuals, perceiving them as less likely to change over time. Educational message did not significantly affect social distance towards individuals with ASD, perceived importance of workplace accommodations for individuals with ASD, or perceived ability of individuals with ASD to possess or learn employability skills. These results suggest that the neurodiversity framework could be at risk for misinterpretation by the general population. Future research should carefully consider how to design public education campaigns that promote respect and appreciation for autistic differences, without potentially triggering an entity/fixed mindset about autistic capabilities. • Points of interest • In this study, participants read a very brief message describing Autism Spectrum Disorder (ASD) as a developmental disability or a neurodiversity. • Participants who read the neurodiversity message were more likely to perceive autistic individuals as being fixed or unlikely to change over time. • The type of message didn’t affect participants’ willingness to interact with individuals with ASD, the degree to which they viewed workplace accommodations to be important for individuals with ASD, or their perceptions that individuals with ASD had or could learn new employability skills. • Public education campaigns should aim to promote respect and appreciation for autistic individuals, while also encouraging a mindset of growth and development for all individuals.

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Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched. © The Author(s) 2015.
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Employers' characteristics and their policies and practices are workplace environmental factors with important implications for the hiring and retention of employees with disabilities. To explore these factors, a survey was conducted by Cornell University in 2011 focusing on employer policies and practices related to the employment of people with disabilities. The private employer membership of the Society of Human Resource Management (SHRM) was randomly sampled across small, medium, and large employers. In all, 675 SHRM members completed the survey and provided information regarding organizational characteristics; disability-related practices and policies regarding recruitment and hiring, training, accessibility and accommodation, retention and advancement; collection of metrics; and their perception of barriers to the employment and advancement of people with disabilities. Ratings of effectiveness of these practices/policies are examined, as well as the number of policies and practices implemented by organizational size and industry. Comparisons of employer views on employment barriers for persons with disabilities to a previous 1998 Cornell/SHRM study are made.
Article
The American Psychological Association (APA) advocates the use of person-first language (e.g., people with disabilities) to refer to individuals with disabilities in daily discourse and to reduce bias in psychological writing. Disability culture advocates and disability studies scholars have challenged the rationale for and implications of exclusive person-first language use, promoting use of identity-first language (e.g., disabled people). We argue that psychologists should adopt identity-first language alongside person-first constructions to address the concerns of disability groups while promoting human dignity and maintaining scientific and professional rigor. We review the evolution of disability language and then discuss the major models used to characterize disability and people with disabilities. The rationale for person-first language and the emergence of identity-first language, respectively, are linked to particular models. We then discuss some language challenges posed by identity-first language and the current intent of person-first language, suggesting that psychologists make judicious use of the former when it is possible to do so. We conclude by offering five observations of ways that use of both person-first and identity-first language could enhance psychologists' cultural competence regarding disability issues in personal and scientific communications. (PsycINFO Database Record (c) 2015 APA, all rights reserved).
Article
The goal of this study was to develop a measure of creativity that builds on the strengths of youth with autism spectrum disorders (ASD). The assessment of creativity focused on the visual-spatial abilities of these youth using 3D modeling software. One of the objectives of the research was to develop a measure of creativity in an authentic learning environment that built on the interests and creative talents of youth with ASD. Traditional creativity tests may underestimate the creativity of youth with ASD because of the tests’ constrained nature, such as having a time limit, being limited to paper and pencil, testing in an over- or understimulating environment, and overlooking visual-spatial ability. A random selection of 27 student 3D design projects (out of approximately 100 projects) was assessed using dimensions of fluency, flexibility, originality, and elaboration. The validity of this assessment was examined by comparing the creativity scores of the 27 projects to the creativity scores given by a team of Google experts (3D designers and software engineers). Results indicated that the scores were significantly correlated for three of the four dimensions of the creativity assessment. There was high inter-rater reliability among coders (M = .82) using intra-class correlation (ICC). Results suggest that this assessment process could be used as a visual-spatial creativity measure for youth with ASD, as well as a creativity measure used by employers to determine real-world creative potential in their employees, particularly those with neurodiversity. http://www.tandfonline.com/eprint/6XFZAcr7MA3hrMdhuUuk/full
Article
Efforts to recruit and retain employees with disabilities are often tempered by employers’ concerns over potential workplace accommodation costs. This study reports on accommodations requested and granted in intensive case studies of eight companies, based on more than 5,000 employee and manager surveys, and interviews and focus groups with 128 managers and employees with disabilities. Two unique contributions are that we analyze accommodations for employees without disabilities as well as for those with disabilities, and compare perspectives on accommodation costs and benefits among employees, their coworkers, and their managers. We find people with disabilities are more likely than those without disabilities to request accommodations, but the types of accommodations requested and the reported costs and benefits are similar for disability and non-disability accommodations. In particular, fears of high accommodation costs and negative reactions of coworkers are not realized; all groups tend to report generally positive coworker reactions. Multilevel models indicate granting accommodations has positive spillover effects on attitudes of coworkers, as well as a positive effect on attitudes of requesting employees, but only when coworkers are supportive. Consistent with recent theorizing and other studies, our results suggest the benefits from a corporate culture of flexibility and attention to the individualized needs of employees. © 2014 Wiley Periodicals, Inc.
Article
Purpose: Disability discrimination legislation means that employees with a disability or mental illness are legally entitled to reasonable workplace accommodations that enable them to work effectively and safely. This scoping review aims to investigate the types of workplace accommodations provided for people with mental illness, and their costs and benefits. Methods: A literature search was conducted using five electronic databases. Peer reviewed research articles published between 1993 and June 2013 were included in this scoping review and their quality was assessed. Opinion papers, reports, and case descriptions were excluded. Results: Nine studies explored workplace accommodations for people with mental illness. The most commonly reported work-related accommodations were flexible scheduling/reduced hours, modified training and supervision, and modified job duties/descriptions. The least common type of accommodation was physical modification to the workplace. For employees with persistent mental illness who were accessing a supported employment agency, the majority of accommodations related to support from the job coach or employment specialist, such as facilitating communication with the employer during hiring or on the job. The quality of the studies varied considerably and the benefits of the accommodations are not yet well documented. There is limited evidence that a larger number of workplace accommodations are associated with longer job tenure. Conclusions: Workplace accommodations appear to be important to support employees with mental illness, but more accessible information about how disability discrimination legislation applies to this population is needed. Future research should address the implementation and effectiveness of mental health-related workplace accommodations.
Article
This study identified subtypes of aggression in a sample of 206 children with autism spectrum disorder (ASD) who participated in 2 risperidone trials. The narratives were derived from a parent interview about each child's 2 most pressing problems. Five subtypes of aggression emerged: hot aggression only, cold aggression only, self-injurious behavior (SIB) only, aggression and SIB, and nonaggressive. All groups showed a high rate of positive response to risperidone with no differences across subtypes. These study findings extend understanding of aggression in ASD and may be useful to guide further study on biological mechanisms and individualized treatment in ASD.
Article
It is currently estimated that about 30% of children with autism spectrum disorder remain minimally verbal, even after receiving years of interventions and a range of educational opportunities. Very little is known about the individuals at this end of the autism spectrum, in part because this is a highly variable population with no single set of defining characteristics or patterns of skills or deficits, and in part because it is extremely challenging to provide reliable or valid assessments of their developmental functioning. In this paper, we summarize current knowledge based on research including minimally verbal children. We review promising new novel methods for assessing the verbal and nonverbal abilities of minimally verbal school-aged children, including eye-tracking and brain-imaging methods that do not require overt responses. We then review what is known about interventions that may be effective in improving language and communication skills, including discussion of both nonaugmentative and augmentative methods. In the final section of the paper, we discuss the gaps in the literature and needs for future research. Autism Res 2013, ●●: ●●-●●. © 2013 International Society for Autism Research, Wiley Periodicals, Inc.
Article
Individuals with disabilities face persistent challenges in gaining meaningful employment. One of the barriers to successful employment is a lack of employability skills. The purpose of this study was to identify employability skills that employers value as being important and to examine whether employers have different expectations for individuals with and without disabilities. One hundred sixty-eight employers from different industries participated in this survey study. Employers considered certain skills as essential for all entry-level employees; however, there were noticeable differences between employers’ expectations for employees with and without disabilities. Different expectations were also found between male and female respondents and between employers from service/business areas and those from science/technology areas. Implications of study findings are discussed.
Article
In constructing this social distance scale, 60 single sentence descriptions heard in ordinary conversations and representing different types of social relationship were rated according to the amount of social distance each possessed. By means of judgments from 100 faculty members and graduate students it was possible to obtain a series of 7 situations with an equidistant mean rating. In administering this test composed of the 7 situations, each subject is given a list of 40 races, 30 occupations, and 30 religions with detailed instructions for rating. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Objectives: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs. Methods: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model. Results: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD. Conclusions: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.
Article
The neurodiversity movement takes an identity politics approach to autism spectrum disorders, proposing autism spectrum disorders as a positive "neuro-variation" to be approached only with interventions that assist individuals without changing them. This article explicates the concept of neurodiversity and places it within the context of autism spectrum disorders advocacy and treatments. It draws from fieldwork conducted in a midwestern urban center, from June through October 2008, with support groups for parents of children with autism spectrum disorders. Neurodiverse sentiments were identified within these groups, despite the pursuance of treatments to which some neurodiversity advocates might object. Therefore, although neurodiversity has influenced parents of children with autism spectrum disorders in this sample, its role as a medical advocacy group has not been fully realized. This article attempts to place neurodiversity in better conversation with advocates and medical professionals.
Article
Objective: Frontline health professionals need a "red flag" tool to aid their decision making about whether to make a referral for a full diagnostic assessment for an autism spectrum condition (ASC) in children and adults. The aim was to identify 10 items on the Autism Spectrum Quotient (AQ) (Adult, Adolescent, and Child versions) and on the Quantitative Checklist for Autism in Toddlers (Q-CHAT) with good test accuracy. Method: A case sample of more than 1,000 individuals with ASC (449 adults, 162 adolescents, 432 children and 126 toddlers) and a control sample of 3,000 controls (838 adults, 475 adolescents, 940 children, and 754 toddlers) with no ASC diagnosis participated. Case participants were recruited from the Autism Research Centre's database of volunteers. The control samples were recruited through a variety of sources. Participants completed full-length versions of the measures. The 10 best items were selected on each instrument to produce short versions. Results: At a cut-point of 6 on the AQ-10 adult, sensitivity was 0.88, specificity was 0.91, and positive predictive value (PPV) was 0.85. At a cut-point of 6 on the AQ-10 adolescent, sensitivity was 0.93, specificity was 0.95, and PPV was 0.86. At a cut-point of 6 on the AQ-10 child, sensitivity was 0.95, specificity was 0.97, and PPV was 0.94. At a cut-point of 3 on the Q-CHAT-10, sensitivity was 0.91, specificity was 0.89, and PPV was 0.58. Internal consistency was >0.85 on all measures. Conclusions: The short measures have potential to aid referral decision making for specialist assessment and should be further evaluated.