Autism Stigma Research Articles

Editorial: Break the stigma: autism. The future of research on autism stigma - towards multilevel, contextual & global understanding

Editorial: Break the stigma: autism. The future of research on autism stigma - towards multilevel, contextual & global understanding

The experiences of autistic adults who were previously diagnosed with borderline or emotionally unstable personality disorder: A phenomenological study.

Autistic people face many barriers to receiving an autism diagnosis. Often, they may be misdiagnosed with borderline personality disorder instead. For our study, we interviewed 10 autistic adults who had previously been diagnosed with borderline personality disorder. This helped us to better understand their experiences. They explained how borderline personality disorder is quite stigmatised and may suggest that people are to blame for their differences in behaviour. They found the treatments they had to try for borderline personality disorder to be harmful. For example, these treatments promoted 'masking'. Previous research showed that masking can be harmful for autistic people, linking it to risk of suicide. This diagnosis also led to healthcare professionals neglecting them and discounting their beliefs. Once they were diagnosed with borderline personality disorder, it was hard to access an autism assessment. When they did receive their autism diagnoses, this was much more positive. This diagnosis was validating. It also improved their mental health, as they were no longer expected to mask - their differences were now accepted. They still felt that autism was stigmatised in society. However, this was very different to the stigma around borderline personality disorder. They felt autism stigma was more about their competence as people, whereas borderline personality disorder stigma was about how they were broken and might be harmful to others. This study is important because it allows their stories to be heard by researchers and healthcare professionals alike. Adding their voices helps to humanise them, promoting positive change in mental health services. More research is now needed.

Evaluating the psychometric properties of the Autism Stigma and Knowledge Questionnaire (ASK-Q) among Greek mental health professionals: an exploratory study

Accurate knowledge about autism spectrum disorder (ASD), whether it is for children or adults, is necessary for healthcare professionals to address the increased needs of this population and decrease the disparities in the services provided. The study aims to adapt the Autism Stigma and Knowledge Questionnaire (ASK-Q) into Greek among mental health professionals (MHP), such as speech therapists, psychiatrists, and the general population (GP). The translated version was administered to 73 MHP and 140 GP according to the Scientific Advisory Committee of the Medical Outcomes Trust guidelines. Findings revealed that MHP had adequate knowledge of autism and did not endorse the stigma of autism. Statistically significant differences were indicated in ASK-Q subdomains between MHP and the GP and its four structural factors. The internal consistency was acceptable (α=0.646). The ROC analysis computed to determine the cut-off points of the ASK-Q four domains returned a result of 39.00 with a sensitivity of 0.616 and 1-specificity of 0.150. The proposed version of the ASK-Q has good psychometric properties and is valid and reliable for assessing the knowledge and stigma beliefs associated with autism among mental health professionals.

Validation of Autism Stigma Knowledge – Questionnaire (ASK-Q) for Brazilian Portuguese

BackgroundLow levels of knowledge among health professionals about autism spectrum disorders (ASD) can impair the care provided to people with autism. In Brazil, there are still no validated instruments that assess the knowledge of pharmacy students and pharmacists regarding ASD. ObjectiveThis study aimed to carry out the cross-cultural adaptation of the Autism Stigma Knowledge Questionnaire (ASK-Q) into Brazilian Portuguese and to evaluate the evidence of content validity. MethodsThis study was conducted in two stages, as recommended in the literature. Stage 1 corresponded to cross-cultural adaptation carried out in six phases (translation of the ASK-Q, synthesis of the translations, evaluation by a committee of experts, evaluation by the target audience of pharmacy students and pharmacists, reverse translation, and evaluation by the author of the original instrument). Step 2 corresponds to the assessment of content validity evidence. ResultsThe instrument presented semantic, idiomatic, conceptual, and cultural equivalences, and the author considered the adaptation adequate. Content validity had an adequate coefficient (0.89). The ASK-Q was cross-culturally adapted to the Brazilian context according to the main theoretical framework. ConclusionsFuture studies will be conducted to evaluate other evidence for the validity of the ASK-Q-Brasil. These studies will be fundamental in assessing knowledge about ASD.

The development of the Autism Stigma and Knowledge Questionnaire, Second edition (ASK-Q-2), through a cross-cultural psychometric investigation.

The Autism Stigma and Knowledge Questionnaire (ASK-Q) was developed to assess autism knowledge across cultural contexts. The current study aimed to examine cultural equivalence of the measure using a large, international database. These analyses identified 18 items in need of examination for removal or revision. A team of autism experts recommended several additional changes to reduce stigma and increase cross-cultural sensitivity and accuracy of the items on the measure. These changes resulted in a briefer measure with maintained statistical support.

Re-Evaluating the Appropriateness of the "Don't Know" Response Option: Guessing Rate as a Source of Systematic Error on Autism Knowledge Assessments.

Several autism knowledge assessments include "don't know" as a response option. The inclusion of this response option may lead to systematic error, such that participants' guessing rate affects the measurement of their autism knowledge. This study examines both predictors of guessing rate for autism knowledge and predictors of autism knowledge, including guessing rate. School-based professionals (n = 396) completed the Autism Spectrum Knowledge Scale Professional Version-Revised (ASKSP-R; McClain et al, Journal of Autism and Developmental Disorders 50(3):998-1006, 2020). and the Autism Stigma and Knowledge Questionnaire (ASK-Q; Harrison et al, Journal of Autism and Developmental Disorders 47(10):3281-3295, 2017). Both assessments include "don't know" as a response option. Guessing rate was the strongest predictor of autism knowledge across both the ASKSP-R and the ASK-Q assessments. For the ASKSP-R, participants who were school psychologists, practicing for more years, had more autism-related clinical experiences, and who personally knew an autistic person had a higher guessing rate. School psychologists and participants who worked with more autistic students scored higher in autism knowledge. For the ASK-Q, participants with greater self-perceived autism knowledge had a higher guessing rate. Participants with a doctorate degree, who personally knew an autistic person, and who worked with more autistic students scored higher in autism knowledge. Guessing rate can be a source of systematic error on autism knowledge assessments. Potential solutions to correct for guessing rate are examined and recommended for future use.

Creating a diversity climate in the workplace: A mixed methods study into knowledge of autism and attitudes toward hiring autistic people in the United Kingdom

BACKGROUND: Autistic individuals face challenges accessing employment, particularly as a result of limited knowledge and understanding of autism. OBJECTIVE: This mixed methods study aimed to measure levels of knowledge of autism and examine hiring attitudes in the workplace. METHODS: To determine knowledge of autism, N = 101 professionals in the United Kingdom responded to a survey that included the Autism Stigma & Knowledge Questionnaire (ASK-Q). Open-ended and closed-ended questions were used to examine hiring attitudes and particularly perceived barriers or drivers to employment for autistic candidates. Nine respondents took part in further semi-structured interviews. RESULTS: Findings report adequate knowledge with a lack of stigma endorsement. Data also indicate a significant relationship between self-reported autism knowledge and the overall ASK-Q total. Autism knowledge was statistically significantly higher in participants who knew an autistic individual through work and where professionals or their companies had knowingly employed an autistic person. Qualitative data provide nuanced understanding about barriers and the possibilities for more inclusive autistic employment. CONCLUSION: A strong case was made for understanding the needs and strengths of individuals in order to generate a diversity climate in the workplace.

Autism, Stigma, and South Asian Immigrant Families in Canada.

Considerable empirical evidence suggests early recognition of autism and access to support result in long-term positive outcomes for children and youth on the spectrum and their families. However, children of racialized families are often diagnosed at later ages, are more likely to be misdiagnosed, and experience many barriers to service access. There is also a paucity of research exploring the experiences of parents from specific immigrant groups caring for their children on the spectrum in Canada, many of whom identify as members of racialized communities. As such, the main aim of the study was to examine how South Asian immigrant parents in Canada are experiencing available care programs and support. Another aim was to examine their perceptions of social stigma associated with autism. We conducted an inductive thematic analysis of qualitative data from nine interviews with South Asian parents living in Ontario, Canada. Findings confirmed barriers to an autism diagnosis and to service access. Additionally, parents reported pronounced autism stigma, which enacted impediments to timely diagnosis, service access, and health-promoting behaviors. Findings also revealed that parents experience considerable caregiver stress and psychological distress. The generated evidence is anticipated to inform equitable policy, programming, and practices that better support the needs of children on the spectrum and their immigrant families.

A pilot mixed-methods evaluation of an intervention to reduce Korean undergraduates’ stigma toward autistic people

BackgroundHeightened stigma in South Korea may contribute to the difficulties that autistic undergraduate students experience in college. This study aimed to explore non-autistic Korean undergraduate students’ stigma toward autistic people using semi-structured interviews surrounding a pilot autism anti-stigma training. MethodDuring the pre-intervention interview, 22 Korean undergraduate students were asked to describe autism, rate their agreement with Social Distance Scale (SDS) items, which asked about their willingness to interact with autistic people, and justify their responses. Participants then completed an online autism training. The post-intervention interview asked the same series of questions but omitted the justification-related questions. We analyzed open-ended responses using content analysis and used a paired-sample t-test to compare pre- and post-intervention averaged SDS items. ResultsParticipants reported different justifications for their desired social distance from autistic people. The types and frequency of justifications mentioned differed depending on the types of relationships expected. Intervention participation was associated with reduced stigma toward autistic people (p < .001). Participants’ extreme stereotypes (e.g., savant) and perceptions of autistic individuals as living in their own world shifted toward recognizing autistic individuals as people living in the same world. ConclusionsThis is the first study to explore why non-autistic Korean college students may desire social distance from autistic people and to attempt to reduce heightened autism stigma in South Korea through an autism training. Future work should use a randomized control trial to examine the causal impact of training on stigma and to identify active ingredients of anti-stigma interventions across cultures.

A dual design thinking - universal design approach to catalyze neurodiversity advocacy through collaboration among high-schoolers.

Neurodiversity describes the fact that humans all have different brains with unique qualities that contribute to society. Though understanding of neurodiversity is gaining traction among the general public, there remains considerable stigma and prejudice toward neurodiverse people. One way to combat these issues is to teach individuals about neurodiversity and encourage them to develop advocacy skills. Development of such knowledge is especially important for adolescents, as they have the capacity to make small (e.g., interpersonal interactions) and large (e.g., school-wide) impacts. Eighty-nine high schoolers participated in a two-week virtual summer camp in 2022; research consent/assent was obtained from 19 (11 neurodiverse/neurodivergent). Campers learned about neurodiversity, Universal Design for Learning (UDL), and Design Thinking (DT) through lectures from researchers and neurodivergent people, as well as group activities and discussions. Campers worked in small groups to design a neurodiversity advocacy project based on the principles of UDL and DT. Each group was facilitated by camp counselors-some of whom were neurodiverse-who were all committed to neurodiversity advocacy. Participants completed questionnaires about autism, ADHD, and dyslexia pre- and post-camp. Some also completed optional post-camp interviews. Pre-camp stigma toward neurodiverse conditions was generally low. However, autism stigma was significantly higher than dyslexia stigma (Z = -2.24, p = 0.025). After camp, autism stigma decreased (Z = -2.98, p = 0.003;) and autism [t(13) = 3.17, p = 0.007] and ADHD [t(13) = 2.87, p = 0.013] knowledge improved. There were no significant changes in ADHD or dyslexia stigma or dyslexia knowledge. Participants reported enjoying collaborating with other campers and learning about UDL and DT. Thematic analysis of interviews generated four themes: Increased Understanding of Neurodiversity; Increasing Empathy and Becoming Less Judgmental; Creating a Neurodiverse Community; and More Awareness is Needed. This pilot investigation suggests that a virtual summer camp can be effective in improving attitudes toward and knowledge of neurodiversity. Qualitative analysis indicated participants became more accepting after the camp, both in terms of being less judgmental toward neurodiverse people and more self-accepting among neurodivergent campers. Future research should investigate the long-term effects of such a program, particularly with diverse samples of students.

Teaching higher education staff to understand and support autistic students: evaluation of a novel training program.

Autistic students are particularly vulnerable to stressors within a university environment and are more likely to experience poor mental health than their non-autistic peers. Students' experiences of stigma from staff and peers, and the masking behaviors they deploy to minimize it, can also result in worsening mental health. Despite these concerns, there is a lack of tailored support for autistic students at university. The current project assesses a co-created training course for university staff focused on debunking stereotypes, educating about the autistic experience at university, mental health presentation among autistic individuals, and practical strategies to improve interactions with autistic students. The Autism Stigma and Knowledge Questionnaire [ASK-Q] was administered before and after the training, to examine changes in trainees' understanding and acceptance of autism and autistic people. Post-training interviews and surveys were also conducted with trainees, covering the impact the training has had on their perceptions of autism, the strategies they found beneficial, and how they will use the materials in future. There were no statistically significant differences between pre- and post-training scores on the ASK-Q, likely due to ceiling effects as pre-training scores were high. Thematic analysis of interviews identified five themes: value of lived experience; developing nuanced, in-depth knowledge of autism; training as acceptable and feasible; links to professional practice; and systemic barriers. Although ceiling effects meant there were no changes to participant's knowledge about autism and autistic people statistically, the qualitative data reveals the extensive benefits they gained from taking part in the training programs. Scoring highly on the ASK-Q did not mean that people could not learn important new information and benefit from the course. This more nuanced understanding of autism led to practical changes in their practice. Listening to and learning from autistic people was seen as particularly important, highlighting the value of co-production. Our results also emphasize the need for varied approaches to evaluating training effectiveness, as reliance on quantitative data alone would have missed the subtler, but impactful, changes our participants experienced. This has important implications for professional practice, both within higher education and more broadly.

Reducing stigma toward autistic peers: a pilot investigation of a virtual autism acceptance program for children.

Inclusive educational practices can be beneficial for autistic children, especially when the general education classroom can better meet the child's academic and socio-emotional needs than a special education classroom. Unfortunately, autistic children may not thrive in general education classrooms if they are perceived negatively, subject to bullying, and are socially isolated and rejected by their typically developing peers. Autism acceptance programs may help address the root cause of these problems, autism stigma. Thus, this study evaluated the effectiveness of a virtual autism acceptance program presented to typically developing, 8-10-year-old children through remote learning technology. The 5-week, stakeholder-approved pilot program included a themed module each week (e.g., facts about autism and reducing stigma, sensory sensitivities, strengths of those with autism) presented through a variety of online educational materials. Pretest, posttest, and maintenance results showed that the program was effective in improving children's knowledge about autism, and children's attitudes and behavioral intentions toward their peers with autism. In addition to reducing autism stigma, study findings suggest that remote learning and virtual tools can be used to implement an efficacious autism acceptance program to children, allowing for greater and more cost-effective outreach to children and schools.

Negative first impression judgements of autistic children by non-autistic adults.

Although autism inclusion and acceptance has increased in recent years, autistic people continue to face stigmatization, exclusion, and victimization. Based on brief 10-second videos, non-autistic adults rate autistic adults less favourably than they rate non-autistic adults in terms of traits and behavioural intentions. In the current study, we extended this paradigm to investigate the first impressions of autistic and non-autistic children by non-autistic adult raters and examined the relationship between the rater's own characteristics and bias against autistic children. Segments of video recorded interviews from 15 autistic and 15 non-autistic children were shown to 346 undergraduate students in audio with video, audio only, video only, transcript, or still image conditions. Participants rated each child on a series of traits and behavioural intentions toward the child, and then completed a series of questionnaires measuring their own social competence, autistic traits, quantity and quality of past experiences with autistic people, and explicit autism stigma. Overall, autistic children were rated more negatively than non-autistic children, particularly in conditions containing audio. Raters with higher social competence and explicit autism stigma rated autistic children more negatively, whereas raters with more autistic traits and more positive past experiences with autistic people rated autistic children more positively. These rapid negative judgments may contribute to the social exclusion experienced by autistic children. The findings indicate that certain personal characteristics may be related to more stigmatised views of autism and decreased willingness to interact with the autistic person. The implications of the findings are discussed in relation to the social inclusion and well-being of autistic people.

What You Are Hiding Could Be Hurting You: Autistic Masking in Relation to Mental Health, Interpersonal Trauma, Authenticity, and Self-Esteem.

Autistic masking refers to some autistic individuals' tendency to hide, suppress, or camouflage their autistic traits, autistic identity, or autism diagnosis. Autistic masking also may include unconscious or conscious attempts to mimic the behavioral, cognitive, or sensory styles of nonautistic neurotypical people and to suppress natural forms of autistic behavior, cognition, and reactions to sensory experiences. Since autistic people are a stigmatized minority in many neurotypical dominated societies, passing as nonautistic through autistic masking may be an attempt to avoid autism stigma and a reaction to previous interpersonal trauma. Increased autistic masking behaviors are associated with reports of increased depression, anxiety, burnout, and exhaustion in autistic people, and thus, exploring the roots and impact of autistic masking is an important mental health topic. This study investigated the relationships between autistic masking and depression, anxiety, gender identity, sexual orientation, interpersonal trauma, self-esteem, authenticity, and autistic community involvement. Participants were autistic adults (n = 342) recruited through autistic social media groups. This study found that higher self-reported autistic masking behaviors were associated with higher reports of past interpersonal trauma, greater anxiety and depression symptoms, lower self-esteem, lower authenticity, and lower participation within the autistic community. Autistic masking was not associated with gender identity or sexual orientation. The results of this study highlight the relationship between autistic masking and past interpersonal trauma, finding that autistic masking behavior is associated with mental health, self-esteem, and authenticity risks for autistic adults. We call into question the teaching of autistic masking strategies in therapies and education programs for autistic people based on the negative associations with autistic masking presented in this study and other research in this field.

Brief research report: Investigating neurodiversity acceptance in the college classroom: an exploratory study

IntroductionHigher education represents a potential opportunity to address autism stigma and, in turn, prevent the negative health consequences of stigma as autistic college students transition into adulthood. The purpose of the current study was to investigate the general college student body and describe their (1) level of autism acceptance based on the neurodiversity framework utilizing the Autism Attitude Acceptance Scale (AAAS) and (2) self-reported knowledge and interests about neurodiversity.MethodsThe sample (n = 90, M age = 21.86, SD = 1.18) featured undergraduates enrolled in a large, diverse, public university in the U.S. Approximately 32% (n = 29) identified as neurodivergent, with 5 identifying as autistic. Separate groups of students completed the AAAS—administered via Qualtrics—in February and September of 2022. In addition, students were provided the opportunity to ask up to three questions each about neurodiversity. We utilized qualitative thematic coding to extract themes from the neurodiversity questions.ResultsWe derived frequency and descriptive statistics for each item and the two AAAS subscales: (1) the General Acceptance (GA) subscale (Cronbach’s alpha = 0.89) and (2) the Attitudes toward Treating Autistic Behavior (ATAB) subscale (Cronbach’s alpha = 0.77). Responses reflected high general autism acceptance. Responses demonstrated greater variability, however, with respect to attitudes toward treating autistic behaviors. Qualitative findings revealed both a high degree of interest in the neurodiversity movement, as well as high variability in knowledge and familiarity with its tenets.ConclusionThis research can inform higher education’s efforts to address and prevent stigma towards autistic and other neurodivergent students.

Stigma and knowledge about autism in Brazil: A psychometric and intervention study.

To promote the full inclusion of autistic people, we must change the knowledge and attitudes of non-autistic individuals. Unfortunately, access to autism information and support remains limited in Brazil, and stigma is also common. Brazilian researchers reached out to a researcher in the United States to co-develop Brazilian surveys to measure autism stigma and knowledge. Together, they made Brazilian versions of stigma and knowledge surveys which autistic people in the United States had helped make. They also adapted an online autism training used in other countries with help from three Brazilian autistic people and the mother of an autistic child. They used the new measures to see if the autism training improved autism stigma and knowledge among Brazilians. The surveys, called EARPA and ECAT in Brazil, were translated into Portuguese in a previous study. In the first study in this article, 532 Brazilians completed the stigma measure and 510 completed the knowledge measure. The researchers used exploratory graph analysis, which uses the connections between items in a survey to understand which items belong together. Seventy-nine Brazilians participated in the training. They were mostly white, female university students. The EGA showed that the stigma survey measured one big idea while the knowledge survey measured four ideas: diagnosis/cause; socio-communicative development; stimming and special interests; and autism in adulthood. Both scales are promising and may be helpful in future Brazilian and cross-cultural studies about autism. Participants reported more knowledge and less stigma after the autism training, which has been found in other countries too.

Evaluation of an Autism Training in a Much-Needed Context: The Case of France.

Autistic people in France have called for community education to reduce autism stigma. As such, training is needed to help university students appreciate autistic peers and autistic people they may work with in their future careers. We adapted an autistic-affirming training from a training developed in other cultural contexts and evaluated it with 107 university students in France using a pretest-post-test design. Questionnaire responses suggested that our brief online training helped improve attitudes toward inclusion, autism knowledge, and stigma among future educators and psychologists in France. Participants' open-ended definitions of autism revealed increased alignment with the neurodiversity movement after training. Findings suggest that wider-scale autistic-led adaptations of autism trainings like the one described in this report could begin to ameliorate autism stigma in France.

Assessing Autism Knowledge Across the Global Landscape Using the ASK-Q.

Substantial variability exists with regard to autism service provision around the world. Service disparities observed in many low- and middle-income countries may be driven, in part, by limited autism knowledge; however, measurement limitations have made it difficult to quantify autism knowledge across countries. The current study uses the autism stigma and knowledge questionnaire (ASK-Q) to quantify autism knowledge and stigma between different countries and demographics. The current study compiled data from 6830 participants collected using adapted versions of the ASK-Q administered in 13 different countries, representing four different continents. Structural equation modeling was used to examine how autism knowledge varied across country and individual factors. Results reveal cross country variability with a large, 17-point difference between the countries with the highest knowledge (Canada) and the lowest knowledge (Lebanon). As expected, countries with higher economies had higher levels of knowledge. We also documented differences based on country worldview, participant occupation, gender, age, and education level. These results help to identify specific regions and populations that might most need greater information about autism.

Public awareness and stigma of autism spectrum disorder in Iran; An online survey

BackgroundThere is no systematic examination of the Iranian general population’s knowledge of autism spectrum disorders (ASD). AimIn this study, we aimed to assess stigma and knowledge about ASD among Iranian people and determine the sociodemographic factors associated with them. Methods and proceduresThis study was conducted as a cross-sectional online survey from April to May 2020, using a convenience sampling method. We designed an online questionnaire using Google forms. We sent a message explaining the study goals and the link to the online questionnaire to groups on popular social platforms in Iran. We used Autism Stigma and Knowledge Questionnaire (ASK-Q) to assess ASD knowledge and stigma. Outcomes and resultsIn total, 600 individuals participated in the study, of whom 301 (50.2 %) were women and 299 (49.8 %) were men. Out of 600 participants, 216 (36 %) had adequate knowledge of the diagnosis/symptoms subscale, 206 (34.3 %) for the etiology subscale, 200 (33.3 %) for the treatment subscale, and 260 (43.4 %) had no stigma toward ASD. Conclusions and implicationsThe level of knowledge about ASD is insufficient among Iranian people of this study. People with lower knowledge of ASD, including older adults and individuals with lower educational levels, may benefit the most from ASD awareness interventions.

"I've Spent My Whole Life Striving to Be Normal": Internalized Stigma and Perceived Impact of Diagnosis in Autistic Adults.

Receiving an autism diagnosis in adulthood often leads to improved self-understanding and deeper self-reflection, which can have major impacts on people's well-being and sense of identity. However, autism diagnosis also exposes individuals to societal stigma, which may become internalized over time. This study aimed to explore relationships between psychological and service-related impacts of diagnosis and internalized stigma using mixed methods. One hundred forty-three autistic adults completed an online survey involving impact of diagnosis domains of Self-Understanding, Well-being, Clinician Support, and Service Access, internalized stigma, and open-ended questions on beliefs about autism diagnosis. On average, participants reported mild levels of internalized stigma and positive impact of diagnosis in all domains except Service Access. Older age at diagnosis was positively associated with Clinician Support only. The path analysis model showed positive relationships between impact of diagnosis domains, with Self-Understanding having a positive effect on Well-being via lowered internalized stigma. We developed four themes of Continuity and Acceptance, Late Diagnosis as Regret and Freedom, Coming to Terms with Being Autistic, and Stigma Resistance from qualitative data. Self-understanding protects against the development of internalized autism stigma. Diagnosticians and service providers play an important role in improving self-understanding and well-being in autistic adults. More research is needed to understand the role of age at diagnosis and mechanisms behind positive identity development after autism diagnosis.