Title: The effect of diagnostic labels on the affective responses of college students towards peers with ‘Asperger’s Syndrome’ and ‘Autism Spectrum Disorder’
Authors: Brosnan and Mills
DOI: 10.1177/1362361315586721
Lay abstract: Many people with a diagnosis of ‘Asperger Syndrome’ have concerns over the replacement of this label with ‘autism spectrum disorder (ASD)’ within the new diagnostic manual that was published in 2013 (DSM-5). Negative associations with labels can have implications for the development of the stigmatization of clinical disorders. Stigma associated with schizophrenia has been widely studied but there is less research on stigma associated with Asperger Syndrome or ASD. One group this is particularly salient for is those on the autism spectrum who are transitioning to university. Although declaring a diagnosis of Asperger Syndrome or ASD may allow for access to support services at university, declaration of diagnosis also raises fears of stigmatization by peers. This study asked 120 university students without any clinical diagnosis (i.e. typical university peers) to read scenarios of a student behaving in a slightly unusual way and then to rate how positive or negative they would feel in this scenario. Sometimes the person in the scenario was labelled as having ‘Asperger Syndrome’, sometimes ‘autism spectrum disorder’, sometimes ‘Schizophrenia’ and sometimes as a ‘typical student’. There were two main findings: (1) There were no differences between the clinical labels; and (2) When comparing those with a clinical label to the ‘typical student’ scenarios, participants felt both more positive and less negative when the person in the scenario had a clinical disorder. This suggests that fears of stigmatization may be unfounded within the university context and that declaration of diagnosis should be encouraged to allow access to available support services.
Title: The relationship between waiting times and ‘adherence’ to the Scottish Intercollegiate Guidelines Network 98 guideline in autism spectrum disorder diagnostic services in Scotland
Authors: McKenzie, Forsyth, O’Hare, McClure, Rutherford, Murray and Irvine
DOI: 10.1177/1362361315586136
Lay abstract: We wanted to find out whether the good practice guidelines (SIGN 98) on the assessment and diagnosis of autism spectrum disorder (ASD) were generally used in child ASD services in Scotland. We were also interested to see if there was a relationship between sticking more closely to these guidelines (adherence) and waiting times for diagnosis. Our study involved analysing existing information from 80 case notes of children who had recently been diagnosed with ASD. Overall, 17 of the 22 of the recommendations we looked at were adhered to in over 50 of the 80 cases. Further, 11 of the 22 recommendations were adhered to in 70 or more cases. Overall we found that adherence was high, with an average score of 16 (out of a possible 19). We did not find that adherence was related to total waiting time. The results of our study suggest that generally the ways in which assessment and diagnosis of ASD is carried out is in line with SIGN 98 recommendations and that using the recommendations as part of practice does not seem to result in increased waiting times.
Title: Let’s talk about it: Peer victimization experiences as reported by adolescents with autism spectrum disorder
Authors: Fisher and Taylor
DOI: 10.1177/1362361315585948
Lay abstract: Research has consistently reported that individuals with autism spectrum disorder (ASD) experience high rates of peer victimization; yet, the majority of this research relies on parent or teacher reports of the bullying experience. The personal experiences and perceptions of such victimization, as reported by youth with ASD, are not well understood. In this investigation, responses to interview questions about bullying and teasing were examined to gain insight into how adolescents with ASD perceive and report their experiences of peer victimization. While most participants (73%) provided examples of a time they experienced bullying or peer victimization, their descriptions of what happened differed from questions that are typically asked on widely used bullying questionnaires, indicating a need to adapt or create questionnaires specifically for individuals with ASD. The participants were also able to provide explanations for why they believe they are targets of victimization, and descriptions of their reactions to bullying. Findings from the interviews are used to provide suggestions for the development of more informative bullying assessments and prevention programs for students with ASD.
Title: The broad autism phenotype predicts relationship outcomes in newly formed college roommates
Authors: Faso, Corretti, Ackerman and Sasson
DOI: 10.1177/1362361315585733
Lay abstract: The broad autism phenotype (BAP) refers to the presence of mild autism traits that do not exceed the threshold for a diagnosis of autism spectrum disorder (ASD). Previous research has indicated that the presence of BAP traits, including aloofness (i.e. reduced social motivation), difficulties in pragmatic language (i.e. using language in a socially appropriate way) and a rigid and perfectionistic personality, is associated with reduced relationship quality in established relationships. However, understanding how this association emerges requires assessment prior to the development of the relationship. In the present study, 162 college roommates who did not know each other very well, completed the Broad Autism Phenotype Questionnaire and reported on: (a) the quality of the relationship and, (b) their interpersonal behaviors towards their roommate, over their first 10 weeks of co-habitation. Results demonstrated that roommates mismatched on aloofness (one high and one low) were less satisfied with their relationship than those matched on it, a process that was driven by lower levels of warm interpersonal behaviors occurring between mismatched roommates. Because relationship satisfaction remained high between two aloof roommates, satisfaction does not appear to depend upon aloofness generally but rather may be diminished when levels of social motivation differ between roommates. In contrast, combinations of roommates with pragmatic language difficulties and rigid personalities were less predictive of relationship outcomes. Collectively, these findings suggest that complementary profiles of social motivation may facilitate relationship quality during the early course of relationship development. Colleges and other organizations may seek to increase relationship compatibility between assigned partnerships (e.g. roommates, work partners, and office mates) by matching pairings on this feature.
Title: Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder
Authors: Weiss, Tint, Paquette-Smith and Lunsky
DOI: 10.1177/1362361315586292
Lay abstract: Many parents of adolescents and adults with autism spectrum disorder (ASD) report feeling unsure about how to access services and find the right kind of care. This study looked at how well 324 parents thought they were able to access and provide care (i.e. their perceived ‘self-efficacy’) to their sons or daughters with ASD age 12–25 years of age. Our results showed that lower self-efficacy was related to having an older child, being an immigrant, experiencing more barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with ASD across the lifespan, it is important that service providers support the efforts of parents to provide and access care.
Title: Concerns of parents and teachers of children with autism in elementary school
Authors: Azad and Mandell
DOI: 10.1177/1362361315588199
Lay abstract: Parents and teachers are encouraged to openly communicate about their concerns regarding their children. The purpose of this study was to examine whether parents and teachers (1) agree about their concerns for their children with autism and, (2) when given the opportunity, whether they discussed these concerns. Participants were 39 parent–teacher pairs of children with autism (the children were, on average, 7 years old). Each parent and teacher was interviewed separately about their concerns and then observed together in a discussion about the child. Parents and teachers generally agreed about their concerns. When given an opportunity to discuss their concerns, almost half of the parent–teacher pairs discussed problems that neither reported as their main concern. These findings suggest that it is more important to focus on parent–teacher communication, rather than agreement.
Title: Which terms should be used to describe autism? Perspectives from the UK autism community
Authors: Kenny, Hattersley, Molins, Buckley, Povey and Pellicano
DOI: 10.1177/1362361315588200
Lay abstract: There is much controversy about the way autism is and should be described. In this study, we surveyed 3470 UK autism community members – autistic people, parents and their broader support network – about the words they use to describe themselves, their children or the people with whom they work. We also asked people to tell us the reasons for their preferences. The results clearly show that people use many terms when talking about autism. People from all of the different groups preferred the words ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’. But the groups disagreed on the use of several words and phrases. Autistic adults, family members/friends and parents preferred to use ‘autistic’ while professionals preferred to use ‘person with autism’. People’s choices of words often reflected their attitudes and beliefs about autism. For example, those who felt that autism is one trait of many in a person tended to prefer person-first language (e.g. ‘person with autism’). Others, who felt that autism is central to their or their child’s identity, opted to use ‘autistic’. Others still noted the need to use different words depending on whom one is speaking to. Overall, our results show that there is no one way of describing autism on which everyone can agree. When uncertain, people should strive where possible to ask those with whom they are working or describing about the way in which they wish to be referred.
Title: Deficits in metacognitive monitoring in mathematics assessments in learners with autism spectrum disorder
Authors: Brosnan, Johnson, Grawemeyer, Chapman, Antoniadou and Hollinworth
DOI: 10.1177/1362361315589477
Lay abstract: A deficit in ‘theory of mind’ has been proposed to account for the social deficits in autism spectrum disorder (ASD), which was originally defined as difficulty in attributing mental states to oneself and others. A wealth of research has explored deficits in people with ASD attributing mental states to others (termed ‘mindreading’), however there is a relative paucity of research exploring an awareness of one’s own mental states in ASD (termed ‘metacognition’). Metacognition has been argued to be more impaired than mindreading in ASD. Metacognition is also argued to be a powerful predictor of performance in school-based learning of mathematics and, on average, mathematics ability is substantially lower among people with ASD than would be expected on the basis of IQ.
We hypothesised that impaired monitoring of metacognition may result in learners with ASD not knowing if they have got an answer to a mathematics question correct or not. We found that, while a group of typically developing children knew when they had got a mathematics question wrong, when learners with ASD got an answer wrong, they thought they had got the answer right. When told they had got the answer wrong, learners with ASD then said that they meant to get the answer wrong. The typically developing group did not do this. Both of these differences between the ASD and typically developing groups are consistent with impaired metacognitive monitoring in ASD and may reflect difficulty in attributing mental states to oneself.
Title: Medicaid 1915(c) Home- and Community-Based Services waivers for children with autism spectrum disorder
Authors: Velott, Agbese, Mandell, Stein, Dick, Yu and Leslie
DOI: 10.1177/1362361315590806
Lay abstract: In the United States, Medicaid is a social healthcare program available for low-income individuals. Within the Medicaid system, states have the option to use waiver programs to provide home and community based services to individuals at-risk for being placed in institutions. Medicaid 1915(c) Home- and Community-Based Services (HCBS) waivers for children with autism spectrum disorder (ASD) are increasingly popular, yet little is known about them. Understanding the characteristics of these programs is important to clinicians and policymakers in designing programs to meet the needs of this vulnerable population and to set the stage for evaluating changes that occur with the implementation of US healthcare reform. Waiver applications that included children with ASD as a target population were collected from the Centers for Medicare and Medicaid Services (CMS) website, state websites, and state administrators. Waiver inclusions and restrictions, estimated costs, and four core ASD services (respite, caregiver support, personal care, and evidence-based treatments) were all documented. Investigators identified 50 waivers across 29 states that explicitly included children with ASD in their target populations. Waivers differed substantially across states in the populations they targeted, estimated cost of services, cost control methods employed, and services offered. HCBS waivers for children with ASD are very complex and are not consistent across states or over time. Further efforts are needed to examine the characteristics of programs that are associated with improved access to care and clinical outcomes to maximize the benefits to individuals with ASD and their families.
Title: The experiences and needs of female adults with high-functioning autism spectrum disorder
Authors: Baldwin and Costley
DOI: 10.1177/1362361315590805
Lay abstract: Previous research has highlighted a need to better understand the everyday life experiences of women at the ‘high functioning’ end of the autism spectrum: that is, who have an autism spectrum disorder (ASD) with no co-occurring intellectual disability. This is a cohort that appears to face particular challenges surrounding the recognition and validation of their ASD symptoms, as well as (for some) in their efforts to ‘mask’ their social communication impairments. Drawing on the findings of an Australia-wide survey, this paper presents data from 82 women with high functioning ASD who reported on their health, education, employment, social and community activities. Where relevant, comparisons are provided with males with high functioning ASD who took part in the same study: however, in the majority of analyses no discernible differences between men and women emerged. The findings highlight the diverse and complex challenges faced by women with high functioning ASD across many areas of everyday life, including high levels of mental health disorder, unmet support needs in education settings and the workplace, and social exclusion and isolation.
Title: What do the general population know, believe and feel about individuals with autism and schizophrenia: Results from a comparative survey in Denmark
Authors: Jensen, Martens, Nikolajsen, Skytt Gregersen, Heckmann Marx, Goldberg Frederiksen and Hansen
DOI: 10.1177/1362361315593068
Lay abstract: Our beliefs, knowledge and attitudes guide our judgments and influence on our behaviours. Individuals with disorders such as autism and schizophrenia have long been groups of people of whom the average person knew very little about, potentially resulting in positive or negative stereotypes. In a survey of the adult general population of the Northern Region of Denmark, we asked 440 people a series of questions related to what they believe characterizes people with autism and schizophrenia and how they would feel about engaging in social interactions with individuals with the diagnoses. The participants were able to recognize many symptoms of both disorders. However, participants often held negative beliefs about individuals with schizophrenia, and positive beliefs about individuals with autism. For example, 33% believed that individuals with schizophrenia are dangerous, while individuals with autism often were thought to be highly intelligent (40%) and creative (27%). More participants reported that they would feel ‘okay to very okay’, about having a friend or a neighbour with autism, compared to one with schizophrenia. Negative beliefs about perceived dangerousness had a negative impact on willingness to socially interact with a person with a diagnosis, while knowing someone with one of the diagnoses had a positive effect. The results suggest that adults in the Northern Region of Denmark have generally good knowledge about the two disorders, but also hold incorrect stereotypes that need to be addressed. Such stereotypes could negatively impact diagnosed individuals and their families’ overall well-being and opportunities for equal participation in society.
