Adolescence marks a time of increased vulnerability to developing mental health difficulties. Recent literature has pointed towards both risk and protective factors that contribute to the development and maintenance of co-occurring mental health difficulties amongst autistic adolescents. For example, autistic individuals may mask their autistic traits to fit in with neurotypical peers, but prolonged masking may negatively influence the development of one's autistic identity and increase vulnerability to developing mental health difficulties. In this commentary, we focus our efforts on highlighting how 1) autistic identity and 2) masking behaviours may be considered within a holistic and person-centred formulation to guide treatment for mental health difficulties in autistic adolescents. In current clinical practice, mental health practitioners may not explicitly enquire about potential construct overlap between these autism related factors and other cognitive and behavioural factors that perpetuate mental health difficulties. We propose a series of assessment questions that clinical professionals may use when developing a shared understanding with autistic adolescents of how they perceive the relationship between autism and co-occurring mental health difficulties. Our goal is to support clinical professionals to consider ways of integrating advances in autistic identity and masking literature in autism to inform the assessment and formulation of co-occurring mental health difficulties when supporting autistic children and young people. Community Brief Why is this topic important? It is now well established that autistic people are at disproportionate risk for having co-occurring mental health conditions, but there is limited high-quality research on mental health interventions for this group. Much research has aimed to adapt mental health interventions developed based on psychological models that do not account for the features of autism. For example, psychological models emphasizing on how one's thinking and behavioral patterns maintain mental health difficulties may fail to contextualize them as autistic individuals' responses to living in a predominantly neurotypical environment. There appears to be a disconnect between emerging topics such as autistic identity (one's personal and social identity in relation to being autistic) and masking (suppression of one's autistic traits in order to "fit in" with non-autistic peers), which can either increase risk/vulnerability to developing mental health difficulties or buffer against emotional and social distress, and clinical assessment and practice when supporting autistic individuals to navigate mental health interventions. What is the purpose of this article? This article focuses on highlighting how the interaction between (1) autistic identity and (2) masking behaviors should be carefully considered when clinicians examine interactions between autistic traits and co-occurring mental health difficulties, leading to more person-centered treatments and shared understanding. In current clinical practice, mental health practitioners may not explicitly inquire about the relationship between one's autistic experiences and other cognitive and behavioral factors that perpetuate mental health difficulties. What personal or professional perspectives do the authors bring to this topic? We are a group of clinical psychologists working with autistic children, young people, and adults in the United Kingdom. We have also conducted research into the areas of masking and autistic identity. What is already known about this topic? We know from research that prolonged and persistent social masking and having a negative autistic identity can increase an autistic individual's vulnerability to experiencing autistic burnout, as well as experiencing negative mental health outcomes over time. However, to the best of our knowledge, incorporation of masking and autistic identity into routine assessment and formulation to understand autistic individuals' experiences of mental health difficulties is very inconsistent in clinical practice. What do the authors recommend? We propose a series of assessment questions that clinical professionals may use when developing a shared understanding with autistic individuals of how they perceive the relationship between autism and co-occurring mental health difficulties. Our goal is to support clinical professionals to consider ways of integrating advances in autistic identity and masking literature to inform the assessment and formulation of co-occurring mental health difficulties when supporting autistic individuals, starting in childhood and adolescence. How will these recommendations help neurodivergent adults now or in the future? We hope this recommendation will contribute toward how clinicians can work together with autistic individuals to ensure formulation of mental health difficulties incorporates their personal understanding of and relationship with autism. Through identifying links between autism and maintenance factors incorporated within psychological models of anxiety and depression, we hope that interventions can be better adapted to acknowledge and account for autistic individuals' experiences in a more person-centered way.
Difficulties in making and maintaining social relationships is common among autistic people. These difficulties are thought to be due to differences in autistic social interaction and social communication that have been theorized to be the result of reduced social motivation. We argue that this theory does not account for camouflaging, a combination of strategies that are employed frequently by many autistic individuals in pursuit of obtaining social relationships; however, its utility in achieving satisfactory friendship and intimate relationships for the individual is not clear. This review synthesizes empirical evidence of camouflaging as a strategy for achieving friendships and/or intimate relationships among autistic adolescents and adults. A systematic search yielded 1421 records. Forty-nine full texts were screened, and eight qualitative studies were retained. Results reveal that camouflaging was a main strategy in pursuit of friendship, with little evidence for intimate relationships, in this sample of autistic adolescents and adults. For most, camouflaging is exhausting, often ineffective and inefficient, and ultimately a challenge to one's social authenticity. Research suggests that many autistic individuals rely on camouflaging in pursuit of friendship and intimate relationships, although this is often a nonpreferred strategy. Some autistic individuals seek to replace camouflage with alternative strategies to obtain social relationships, yet outcomes typically remain dissatisfying. This demonstrates that we need to reconsider the social motivation theory, and to better understand alternative strategies that can help autistic individuals to obtain authentic, satisfactory social relationships, and to support opportunities to achieve these desired outcomes. Why is this topic important?: Many autistic individuals feel dissatisfied with the quality and quantity of their social relationships and are, therefore, more vulnerable to loneliness and reduced well-being. This may be because autistic people communicate and interact differently to non-autistic individuals. These differences can, at times, be misinterpreted as a lack of motivation to socialize and connect with other people. But many autistic individuals are motivated to build meaningful friendships and intimate relationships and often rely on camouflaging to achieve these outcomes. Regardless of their efforts, many autistic people continue to struggle to make the social connections they desire. Therefore, the effectiveness of camouflaging on building friendships and intimate relationships needs to be better understood.What was the purpose of this review?: We set out to understand the impact that camouflaging has the friendships and intimate relationships of autistic individuals by examining the existing research.What are the results of this review?: We found that camouflaging is a common strategy used by many autistic individuals to connect with others in aim to build and maintain friendships, especially with non-autistic people. Pressure to camouflage began early in life, for many autistic participants, and continued to increase in both complexity and use across the lifespan. However, many autistic individuals remained dissatisfied with the friendships and intimate relationships gained through its use. For many, camouflaging prevented genuine social interactions, and the friendships that resulted from its use were often lacking in closeness and authenticity for the autistic individual. To reduce the reliance on camouflaging, some autistic individuals socially withdrew, or attempted to find friendship within the autistic community or in social contexts where camouflaging felt less necessary. Yet, many autistic participants remained feeling lonely, frustrated, and dissatisfied with their social relationships.What were the weaknesses of this review?: Only half of the eight studies involved an autistic researcher and author, while most studies incorporated community participation in the design of the study. We found that participants were mostly female, from countries such as the United Kingdom and United States of America, and most participants were above18 years of age. Results may be impacted by a lack of researcher and sample diversity, and minimal autistic input in study design and interpretation; thus, generalization of these findings may be limited. Camouflaging is an evolving area of research, and we recognize that there may be terminology or perspectives that were not captured by our review.What do the authors recommend and how will this help autistic adults in the future?: More research is needed to better understand autistic social interactions and to support alternative strategies to camouflaging, including environmental modifications and changes in the way non-autistic people understand and interact with autistic people. We recommend that autistic individuals' strengths and needs drive this area of research, and that supports address ways that all people can help to enhance autistic social outcomes. We anticipate that these strategies will promote more authentic social relationships, reduce reliance on camouflage, help to decrease loneliness, and improve well-being among autistic individuals.
Although previous qualitative work has identified the role of intolerance of uncertainty in the development of anxiety in autism, there has been little research on what uncertainty means exactly for autistic people and/or what types of uncertainties may be particularly anxiety provoking. Fifteen autistic adults (five women) took part in this qualitative interview study in which we probed their understanding and experiences of uncertainty and its links to feelings of anxiety. We applied a grounded theory approach to transcripts of the interviews, broadly following Charmaz's constructivist epistemology, to derive a theory of uncertainty as it is experienced by the autistic people we interviewed. From the interviews, we derived a model of uncertainty, which identified three different levels of uncertainty, ranging from the certainty of the "known," through to the relatively manageable uncertainty of the "known unknown," to the anxiety-provoking "unknown unknown" or that which cannot be made known. We propose in this model that anxiety can be understood as resulting from difficulties with avoiding or controlling the latter types of uncertainty through planning or information gathering. Previous researchers had treated uncertainty as a unified construct. However, they may not have explored what uncertainty might mean for autistic people. We have shown in this study that not all uncertainties are experienced equally. We hope that this research will help develop a more nuanced understanding and that it constitutes the first step in disentangling anxiety from intolerance of uncertainty in autism. Community Brief Why is this an important issue? Anxiety can have a significant negative impact on autistic people’s lives. The current work is important because it aims to explore why uncertainties in life can often be very anxiety-provoking for autistic people. What was the purpose of this study? A number of researchers have tried to understand how anxiety “works” for autistic people and how this might differ from the experience of non-autistic people. Intolerance of uncertainty describes the ways in which someone responds to uncertainty as something which is undesirable. Evidence suggests that intolerance of uncertainty could cause anxiety or make it worse for both autistic and non-autistic people. What is less clear, however, is what uncertainty itself means for autistic people, and how this might be related to anxiety. At the moment, intolerance of uncertainty is mostly measured through a self-report questionnaire, which does describe what kinds of uncertainties in life autistic people find problematic. Neither does it explore why people feel that way or what they do to manage uncertainties. The purpose of the current study, therefore, was to explore these questions through interviews. It was hoped that this would lead to a better understanding of how intolerance of uncertainty relates to anxiety for autistic people. What did the researchers do? We conducted interviews with autistic people, asking them how they understood, thought about, and experienced uncertainty. We then organized what they said into themes and analyzed them to see how they related to each other using a method called grounded theory. From this we created a theory of uncertainty and how it is experienced by autistic people, which we then shared with the interviewees to check whether it matched what they said. What were the results of the study? In our theory, we depicted uncertainty as different levels of unknowns. We identified three different levels of knowns. The first, the knowns, consisted of familiar things and routines in people’s lives. The second, known unknowns, consisted of situations in which things could be done to get-to-know what was not known. The third, unknown unknowns, included unexpected situations that people could not prepare for. We also identified that how much control people felt they had in an uncertain situation was important in deciding whether it was anxiety-provoking or not. What do these findings add to what was already known? It was already known that intolerance of uncertainty is problematic for autistic people and that it plays a role in anxiety, but it was unclear which type of uncertainty was particularly anxiety-provoking and why. What are the potential weaknesses in the study? We were only able to interview autistic people who communicate in spoken language. It would be good to find ways of including autistic people who are nonspeaking and those who may have a significant additional learning disability. How will these findings help autistic adults now or in the future? With this research, we hope to have helped develop a better understanding of the mental health needs of autistic people.
In Scotland, to become qualified to teach children in primary schools (aged 4-11 years), student educators must complete degree programs that include a combination of university- and school-based placement learning environments. Previous studies have examined the experiences of neurodivergent students in other professional degree programs, most notably in health care. Yet there is limited research considering the barriers and enablers for neurodivergent students in programs leading to careers in education. This study contributes to the evidence base by examining the experiences of neurodivergent student participants from two education studies programs run by one Scottish university: one including required professional placement experience in schools leading to professional teaching qualification status and the other a theory-based course with flexible community placement options. Nine neurodivergent students, all originally following the professional placement strand, participated in a semi-structured interview. Data analysis was led by a neurodivergent educator, using reflexive thematic analysis. The resultant themes identified were named to reflect the lived experience of participants: Who we are matters; How we are matters; How we know matters; and What we need matters. Neurodivergent education students reported risk of withdrawal from and/or challenges within the professional strand program, particularly emphasized in relation to placements. They felt that they needed to navigate additional systemic barriers to reach the same result as neurotypical peers. Furthermore, they discussed how the accessibility and attitudes of others impact upon opportunities for disclosure, inclusion, and support. Our findings also suggest the possibility of an attitudinal hierarchy of neurodivergence acceptability occurring within educational environments. Neurodivergent students report a range of challenges when attempting to successfully complete education degree programs leading to the teaching profession. Our findings identify the need for greater advocacy, support, and inclusion of neurodivergent participation, which attends to the nuanced experiences that education students face. Why is this an important issue? Increased numbers of neurodivergent students are entering higher education. However, studies suggest that neurodivergent students are more likely to leave or divert from an initial course of study. Further studies have shown that autistic educators are more likely to leave the teaching profession than neurotypical peers. Investigating barriers and supports for neurodivergent student teachers to complete their degree programs is important. Such efforts may lead to higher levels of recruitment and retention among this population. The lead researcher is a neurodivergent researcher, who was a primary teacher in the Scottish education system. What is the purpose of this study? This study aimed to investigate the experiences of neurodivergent education students in their required learning environments over the course of their programs, to identify specific challenges this population may face and areas where change is required. What did the researchers do? We recruited nine neurodivergent student teachers within the university. Demographic information was collected, including age, neurotype, gender identity, and ethnicity. We asked open-ended questions about experiences within university and placement settings. We looked across participant data and analyzed responses by identifying patterns or “themes,” finding commonalities shared across participant experiences. What did we find? We identified the following four key findings affecting neurodivergent student teachers: (1) They face increased risk of withdrawal from, or barriers to success within, the professional strand education programs leading to qualification as teachers; (2) they needed to overcome additional systemic barriers to reach the same result as neurotypical peers; (3) they felt that accessibility and attitudes of others impacted upon their opportunities for disclosure, inclusion, and support; and (4) they acknowledged representation as universally beneficial, but students with some neurotypes reported more positive placement experiences than those of others. This suggests that a possible hierarchy of neurodivergence acceptability exists. What do the findings add to what was already known? This study is the first to qualitatively investigate the lived experience of neurodivergent student teachers in a university education program leading to professional qualification. This study supports previous research investigating ways to increase accessibility for neurodivergent students in higher education environments and supports previous research looking at experiences of qualified autistic education staff across the United Kingdom. This study adds to the existing research to provide clues as to where support can be best directed and change posited. What are potential weaknesses in the study? Our sample was White and predominantly identified as female, which, although representative of the current Scottish context in this professional area, does not allow for intersections of identity that may impact upon lived experiences. The originating university offers two education programs, one with entry to the teaching profession incorporating school placements and the other with a theoretical approach to education. Participants at the risk of burnout or withdrawal were thus able to negotiate movement between the two, which may not be possible for students in other universities. Despite the identified issues, this study serves as an important starting point for research in this underrepresented area. How will these findings help autistic adults now or in the future? This research calls into question the current accepted route into the teaching profession as potentially discriminatory against neurodivergent student teachers. Our findings should be utilized as a call to action to examine how education programs, school placements, and interpretation of professional standards may be made more sympathetic to the needs of neurodivergent students. We advocate for change to increase the chances of a more representative teaching profession by reducing stigma for neurodivergent educators and allowing more neurodivergent adults to access the profession. Increased representation would lead to better understanding of neurodivergence, impacting positively on educators and learners.
Participation rates for autistic young adults in higher education are increasing. However, academic outcomes and retention are lower than for neurotypical peers, and mental health and well-being concerns exist for these young people. Universities and colleges must provide inclusive supports that consider the needs of autistic young people and reflect neurodiverse affirming approaches. Our systematic review examined empirical studies of support initiatives for autistic young adults in higher education. We considered initiatives' impact in enhancing psychological well-being, academic achievement and retention, and the extent to which programs were coproduced and informed by an understanding of autistic culture and individual experiences. Our review followed the Preferred Reporting Items for Systematic Reviews and Meta-analysis standards of systematic review. Studies conducted between 2013 and 2023 that investigated programs for autistic young adults in university and examined psychological well-being, academic achievement, or retention were eligible for inclusion. Sixteen studies met the inclusion criteria. We critically appraised those studies using the Joanna Briggs Institute tool and assessed the support initiatives for quality following the Australasian Society for Autism Research criteria. The most prevalent support programs for autistic young adults in higher education were mentoring initiatives. Multimodal interventions adopted a psychosocial focus, with primary aims of developing social, organizational, and empathic listening skills. Participants in mentoring programs demonstrated increases in well-being and academic outcomes, including participants' feelings of connection, belonging, and academic self-efficacy. Multimodal interventions showed reductions in areas such as anxiety and loneliness, and improvements in self-esteem. The support programs we identified in this review demonstrated positive effects for autistic young people's well-being, academic achievement, and retention. Mentoring interventions were beneficial and focused on individual strengths, interests, and challenges of autistic individuals. Our recommendation for future research and support initiatives is to tailor programs to the individual needs of autistic university students, using codesign principles and focusing on environmental and systemic changes to enhance their full participation in higher education. Community Brief Why was this review done? More autistic young adults are going to university. However, they often face learning and social difficulties while there. They also report decreased well-being and may be at risk of dropping out of their studies. We wanted to identify which university support programs enhance the well-being and academic success of autistic individuals and which do not. What was the purpose of the review? Our review aimed to systematically gather and assess studies that describe support programs offered to autistic students. We wanted to see how much these programs help students and whether current support programs genuinely enhance students’ well-being and academic success. What did the researchers do? We looked for studies that evaluated support programs for young adults aged 18–25 who were either currently at university or had recently graduated. We sought to understand how those programs enhanced students’ well-being, academic success, and retention. We also evaluated the different types of programs available, looking at how much autistic individuals were involved in designing those programs and how well those programs addressed the unique needs and experiences of autistic young people. We summarized the findings of the different studies in narrative form. What were the results of the review? Many support programs continue to focus on changing the behavior of autistic individuals. These practices try to “fix” the person rather than the place. However, support programs informed by the neurodiversity paradigm are starting to appear and are helping to push for positive change. Most of the multimodal support methods we investigated used the same approach for everyone, focusing on what autistic people couldn’t do well. Right now, the evidence suggests that the best way for universities to provide personalized support, which builds on the strengths and needs of autistic young adults, is with mentoring programs. What do the findings add to what was already known? Our systematic review brings together the results of several recent studies that seek to show how young autistic people can be best supported at university. The support programs we reviewed looked at improving wellbeing, grades, and retention. Our review suggests that there is a growing change in how people approach this topic. Instead of focusing on what autistic students cannot do, newer methods are starting to respect and support autistic strengths and differences. Autistic people are helping to create these new approaches. We found mentoring programs had the biggest impact on wellbeing and academic success, with autistic students reporting feelings of connection and increased confidence in their academic abilities. What are the potential weaknesses of this review? We examined different types of studies which made it difficult to combine the results. These studies did not include a range of different autistic experiences such as those from different cultural and gender groups or those with additional disabilities. We could not fully explore larger issues such as educational policies and higher education funding. How will these findings help autistic adults now or in the future? Our research will help universities create more suitable support programs for autistic young adults. We suggest ways to assess these programs, making sure they are codeveloped with the autistic community, and consider the unique needs and experiences of autistic students.
Although autistic individuals can require more health care services than the general population, the care they receive is often suboptimal. During young adulthood, autistic patients face additional developmental barriers and achieve poorer medical outcomes as they transition between pediatric and adult health systems. However, little is known about their transition needs, perceptions, and experiences. This study examined the health care experiences and transition perceptions of 213 autistic young adults aged 18-26 years (mean age 22.72). Both formally diagnosed and self-identified autistic individuals participated in the study. Our research team used mixed methods online survey, including an original health care experience questionnaire, an adapted measure of health care transition readiness, and short-answer questions. We used nonparametric statistical tests to examine relationships between quantitative variables, and qualitative responses were analyzed using an inductive, open-coding approach. Quantitative analyses revealed health care environments to be least accessible for individuals who are female or gender nonconforming, nonspeaking, and/or in their late teenage years. These individuals also showed lower levels of involvement in their own care compared with other subgroups. Conversely, those with a history of regular medication management reported higher levels of readiness for health care transition. Open-ended survey responses clustered around the following five themes: (1) deciding whether to disclose an autism diagnosis, (2) medical staff's current understanding of autism, (3) discrimination, (4) communication challenges, and (5) unique needs. Participants in this study preferred to be actively involved in their health care and required supportive, knowledgeable providers and inclusive environments to accomplish this goal. Noting this, it is important for health care providers to assess individual needs and preferences and design focused supports for autistic patients transitioning from pediatric to adult care. Community Brief Why is this an important issue? After young people reach a certain age, they can no longer be seen by a pediatrician. Therefore, part of being a young adult is finding a doctor specializing in adult medicine. Autistic adults are not well served in the health care system, and many receive less optimal care than neurotypical adults. This may be because doctors in adult medicine expect their patients to be active participants who are comfortable in and knowledgeable about health care settings yet do not take steps to make the setting accessible for autistic people. What was the purpose of this study? The purpose of this study was to explore the health care transition experiences, needs, and perceptions of autistic young adults. What did the researchers do? In this study, we surveyed 213 autistic young adults about their health care experiences. The online survey included multiple-choice, yes/no, and write-in questions. We used the multiple-choice and yes/no answers to see what type of health care experiences people had, how accessible health care was to them, and how involved they were in their own care. We read the write-in answers and sorted them into themes by grouping similar responses together. What were the results of the study? Autistic young adults in this study described several challenges, including deciding whether to tell their doctor about their autism diagnosis, interacting with medical staff who do not understand autism (or discriminate against autistic people), communicating their needs to medical staff, and wanting their needs to be accommodated while also being treated as an adult. The people in this study who had an especially hard time transitioning to adult health care were (1) women and gender nonconforming, (2) nonspeaking, (3) teenaged, and (4) not regularly taking medications. A person who belongs to none of these groups might still have a hard time transitioning to adult health care, and someone who belongs to all these groups might find transition very easy. However, it is important to know who is most at risk so that we can identify ways to help make transition easier for autistic young adults. What do these findings add to what was already known? These findings include new information on how accessible health care is to autistic young adults, how involved they are in their care, and how ready they are to transition to adult health care. This study explored different factors that affect all these outcomes. We used that information to draw conclusions about different ways to support autistic young adults who are going through this important time of growth and change. What are potential weaknesses in the study? This study was an online survey, which may not have been accessible to some autistic adults with certain language-related disabilities or intellectual disabilities. In addition, most of our participants were able to use spoken language. The experiences of other autistic people, particularly those who are nonspeaking, may be different from these results. How will these findings help autistic adults now or in the future? By knowing what factors make it difficult for autistic young adults to transition to adult health care, we can understand how to make the transition easier. For example, medical staff can help by making the environment more sensory-friendly, using the autistic patient’s preferred method of communication, and seeking out up-to-date knowledge on autism.
Separately, autistic and LGBTQIA+ people report experiencing negative social participation outcomes. Specifically, autistic individuals report fewer friendships but a desire for them. LGBTQIA+ individuals report experiences of family rejection, microaggressions from friends, and discrimination. Based on intersectionality theory, we hypothesize that individuals who are both autistic and LGBTQIA+ may have additional challenges with social participation and require unique support. Therefore, in this study, we aim to describe the experiences of social participation and the supports and barriers for autistic LGBTQIA+ adults. This analysis utilized data from a mixed-method, participatory research study, including qualitative data from 57 LGBTQIA+ autistic adults and quantitative survey data from 107 LGBTQIA+ autistic adults. Qualitative data were collected through virtual semi-structured interviews or focus groups and analyzed using interpretative phenomenological analysis. Analysts used an audit trail and negative case analysis and checked for representativeness of the data across participants to ensure trustworthiness of data. A survey was developed using the findings from the qualitative data and built in Qualtrics for dissemination. Survey data were analyzed using descriptive statistics and merged with qualitative data. Participants discussed relationships with family, friends, and intimate partners-however, primarily focused on friendships. Participants described how they "found their people" serendipitously, through shared interests or hobbies, or intentionally online. A subset of participants reported challenges "finding their people," with specific barriers being challenges online and inaccessibility within LGBTQIA+ spaces and events. Participants reported strategies to safely move relationships from online to in-person, such as identifying safe, accessible social activities of shared interest with their friend or intimate partner(s). Autistic LGBTQIA+ adults validate the importance in "finding their people," yet not all autistic LGBTQIA+ adults have successfully developed these relationships. Identified supports and barriers indicate a need for more support to help LGBTQIA+ autistic individuals connect in person, including moving online relationships safely to in-person activities. In addition, these results suggest the need for increasing accessibility of LGBTQIA+ events, such as additional structured activities within the LGBTQIA+ communities and sensory-friendly Pride event options. Community Brief Why is this an important issue? LGTQBIA+ and autistic adults separately report fewer friendships and experience more rejection, bullying, and discrimination. Many autistic individuals are LGBTQIA+, but there is little information available on the social experiences of people who are both autistic and LGBTQIA+. What was the purpose of the study? We wanted to understand social experiences for people who are both autistic and LGBTQIA+, as well as identify the things they thought were helpful and hurtful when developing high-quality relationships. What did the researchers do? We interviewed 57 LGBTQIA+ autistic people using a guide that was developed by a research team that included LGBTQIA+ autistic researchers. We analyzed transcripts from the interviews related to the questions about social experiences, such as experiences with family, friends, or intimate partners, to find themes that are described using direct quotes from participants. Identified themes from the analysis were then included in a survey that 107 LGBTQIA+ autistic people responded to. Survey data were analyzed using the frequency of times people reported certain things and percentages. These data were combined with the qualitative data. What were the results of the study? We found that participants “found their people” through shared interests or hobbies, serendipitously or by chance, and intentionally online. A few people said they were still struggling to “find their people” because of challenges with accessibility in LGBTQIA+ communities and because of challenges with moving relationships from the internet to in-person. What do these findings add to what was already known? These findings confirm previous work that found shared interests and hobbies and the internet are good places to meet and maintain friendships for LGBTQIA+ autistic people. This work adds to these findings by describing experiences where people just connected with one another by chance, later figuring out that they shared identities. It also adds to existing work by indicating a need to improve accessibility of LGBTQIA+ spaces and a suggestion to support communication skills to move online relationships to in-person for those who want to. What are potential weaknesses in the study? The participants primarily communicated verbally and had low support needs, which means this information will not be generalizable to those who primarily use assistive and augmented communication devices or another form of communication when establishing relationships. How will these findings help autistic adults now or in the future? These findings provide explicit suggestions for things that community members and support personnel can do to help LGBTQIA+ autistic people develop and maintain friendships and intimate partnerships.
The emerging literature about parenthood indicates specific differences in autistic individuals' experiences compared with non-autistic ones. We conducted a systematic search of the literature across PubMed, Embase, Web of Science, and CINAHL Complete to identify articles related to pregnancy, childbirth, and parenthood in autistic individuals. The search was completed on March 5, 2024, and identified 35,581 records. Inclusion criteria included the use of semistructured interviews or focus groups for data collection and interpretative phenomenological analysis or thematic analysis for data analysis as the best methods for exploring our subject. After applying inclusion and exclusion criteria, six articles were included in the systematic review and underwent thematic synthesis. Each study comprised between 7 and 24 autistic participants (all females except three). Their methodological quality was assessed with the Critical Appraisal Skills Programme tool for qualitative studies. We identified three key themes as follows: 1. Parental Challenges and Adaptations; 2. Social Relations and Support; and 3. Identity and Personal Growth. Our analysis identified that autistic individuals face diverse challenges in becoming parents and parenting, including primarily sensory and communication difficulties, which impact their ability to interact with professionals and to manage daily tasks, requiring the implementation of diverse strategies and adaptations to cope. Autistic adults reported a strong emotional connection they build with their children, the need to advocate for them when they are also neurodivergent, and the difficulty in finding formal and informal support fulfilling their specific needs. The educational approach of autistic parents seems influenced by their autism, bringing both strengths and challenges to create, ultimately, a supportive parenting environment. The experience of becoming a parent and raising a child is described as a key step in their personal development. These findings will help autistic parents by promoting a better understanding of their experiences, challenges, and strengths by health care professionals and social workers. Why is this an important issue?: Many people are diagnosed autistic as adults, and some autistic children want to become parents when they grow up. However, there are few specific supports for autistic parents. Research shows that their experience of parenthood has unique aspects, which can be both strengths and challenges.What was the purpose of this study?: We conducted a comprehensive review of the literature on pregnancy, childbirth, and parenthood in autistic adults. Our goal was to identify, synthesize, and analyze qualitative studies to pinpoint the strengths, challenges, and specific needs of autistic adults in this area and to propose supportive interventions.What did the researchers do?: We performed a thorough search across four scientific databases to find relevant articles. We selected the applicable studies and analyzed their data by coding the results line by line. We reused codes from previous studies and created new ones as necessary. We then organized these codes into related areas to develop descriptive themes and combined them into analytical themes.What were the results of the study?: We identified three key themes as follows: 1. Parental Challenges and Adaptations; 2. Social Relations and Support; and 3. Identity and Personal Growth. We found that autistic individuals encounter several challenges in becoming parents and raising children, mainly due to sensory and communication difficulties. These issues affect their interactions with professionals and their management of daily tasks. Despite this, autistic adults report deep emotional connections with their children, a strong need to advocate for them, and difficulties in finding adequate support. Their parenting style, shaped by their autistic traits, presents both strengths and challenges. They view parenthood as a major milestone in their personal growth.What do these findings add to what was already known?: Our work identifies and describes the unique strengths, challenges, and needs of autistic adults in their parenting journey. It allows us to propose interventions to support autistic parents and highlights areas for future research.What are the potential weaknesses in the study?: As a qualitative literature review, our study did not include data from quantitative or mixed-method studies. By focusing on studies using the most adequate methodology, we may have missed some other qualitative studies offering new insights. Some participants were included based on self-reported diagnoses rather than confirmed by a mental health professional. In addition, the studies included very few men and no autistic parents with intellectual disability or borderline intellectual ability, which limits the generalizability of our findings to these populations.What do the authors recommend for future research on this topic?: Study the parenting experiences of autistic men, focusing on how sensory challenges affect their involvement with their children. Assess the importance of support from relatives and strategies to mobilize it. Describe the parenting style of autistic parents to enhance professional understanding and reduce bias. Identify obstacles to parenthood for autistic adults to develop suitable support. Examine the prevalence of autism in the children of autistic adults, which appears significant but remains unexplored.How will these findings help autistic adults now or in the future?: These findings highlight the challenges autistic adults face in parenting and suggest interventions to support them. They also help counteract biases among health care professionals and society, fostering better understanding and support for autistic parents.
As more autistic college students enroll in higher education, the need for capable faculty to support their learning experiences rises. Although well intentioned, many educators are not always the most adept in supporting their autistic learners. This descriptive phenomenological reflective lifeworld research seeks to understand the essence of autism-specific college support program faculty experiences in teaching autistic college students. This study entailed conducting interviews with four full-time faculty, two staff who teach part-time, and eight other administrators or staff at a community college boasting an autism-specific college support program. Additionally, the author drew on observing a classroom session, program information session, and the campus via a tour, as well as course syllabi, to provide a fuller picture. Dahlberg and colleagues' data analysis methods provided a mechanism for interpreting the information. Four themes helped describe the essence of faculty experiences in teaching their autistic learners: unfamiliarity, flexibility, disruption, and optimism. Whereas faculty may, at first, lack familiarity with autism, they draw on that desire for further knowledge to directly learn from their students, creating opportunities for trust building. They also welcome feedback from students and fellow staff alike to engage in flexible teaching techniques. Adaptability and willingness to learn help them navigate difficult course experiences. These experiences ultimately enhance faculty members' confidence to teach autistic learners and translate inclusive teaching measures to their courses writ large. This study unveils the many aspects of faculty members' experiences in interacting with autistic students, particularly within the unique landscape of a college with an autism-specific college support program that highlights neurodiversity. Importantly, this study contributes new knowledge about how faculty draw on their resources, knowledge, and past teaching experiences to shape their iterative approaches to working with autistic students. Why is this an important issue?: Autistic college students are increasingly enrolling in higher education institutions, yet many of the faculty and staff who work with them are unaware of, and unprepared to, support their classroom experiences. This issue contributes to faculty sometimes misunderstanding autistic students and missing opportunities to build more inclusive classrooms.What was the purpose of the study?: My aim was to find out what faculty experience in working with autistic learners, and how they adapt their teaching approaches.What did the researcher do?: This study was set in a community college, with an autism-specific college support program that works toward college and career skills for its neurodivergent learners. I conducted interviews with four full-time faculty teaching in this program, two additional part-time faculty who are college staff, and two additional staff members. I also observed a class session and program information session, toured the campus, and reviewed all current course syllabi to understand faculty members' evolving experiences in supporting autistic learners.What were the results of the study?: I found that faculty felt a mix of emotions and adopted various teaching approaches, when working with autistic college students. For instance, faculty often entered from a place of unfamiliarity, though they sought knowledge from colleagues and additional resources to enhance their understanding of, and comfort to teach, autistic learners. This context helped them in navigating moments when students acted in a disruptive manner. Many faculty relied on past course experiences, and interactions with autistic learners, to inform their feelings of optimism in teaching future students.What do these findings add to what was already known?: To date, while there have been a handful of studies focused on faculty members' engagement with autistic learners, few have concentrated on settings within an autism-specific college support program. Study findings show how faculty working in these environments committed to neurodiversity, incorporated inclusive and transferable teaching techniques, while also growing in their comfort and confidence to work with autistic learners.What are the potential weaknesses of the study?: As I engaged only with faculty members teaching in, and staff familiar with, the autism-specific college support program, I did not necessarily gather perspective from individuals with less context on neurodiversity. In the end, the campus and participants selected for this study may not be representative of most college campuses without such autism acceptance.How will these findings help autistic adults now or in the future?: Study findings will give perspective into how faculty members can more inclusively serve autistic learners, ultimately benefitting the academic experiences of future generations of autistic students entering college.
Autistic transition-age youths experienced unique psychosocial challenges in transitioning to postsecondary settings. These challenges may result from both the nature of autism and the developmental tasks associated with this unique developmental stage. Given the challenges and barriers faced by this population, understanding the relationship among factors in this transition period and developing relevant interventions are crucial. The purpose of the study was to examine the relationships between autism acceptance and coping strategies and understand how they impact the quality of life (QOL) of this population. In total, 204 autistic youths aged 18-26 years recruited from Prolific and Amazon Mechanical Turk completed an online survey consisting of instruments measuring target variables. Two parallel mediation models were examined to explore the relationships between autism acceptance, coping, and QOL. Both parallel mediation models showed good fit. In the first model, perceived acceptance had a significant direct effect on QOL (β = 0.512, p < 0.01) and a significant indirect effect through engagement coping (β = 0.059, p < 0.01). In the second model, the effects of self-acceptance on QOL were fully mediated by both engagement (β = 0.073, p < 0.01) and disengagement coping (β = 0.089, p < 0.01). Autism acceptance is a crucial psychosocial factor in impacting successful transition to postsecondary settings. Acceptance-based transition services should be developed for autistic youths to help them gain a comprehensive understanding of their relationship with self, others, and their autism. Community Brief Why is this an important issue? Autistic youths, aged from 18 to 26 years, experience a lot of psychosocial challenges when transitioning to postsecondary education and employment. These challenges result from not only social interaction difficulties but also the overwhelming responsibilities to grow more independently at this developmental stage. Consequently, they often experience poor mental health and lower level of quality of life compared with their neurotypical peers. To help them achieve successful transition, it is imperative to help them better understand themselves as an autistic individual and their relationship with other people. Researchers have found that both autism acceptance and types of coping strategies used can predict better quality of life in separate studies. However, we don’t know whether autism acceptance can influence the selection of coping strategies or not. What was the purpose of this study? Our goal was to examine the relationship between autism acceptance, coping strategies, and quality of life. Specifically, we want to see in what ways autism acceptance and coping strategies interact with each other to impact quality of life of autistic transition-age youths. What did the researchers do? We asked 204 autistic youths living in the United States to complete online surveys. They answered questions about their level of autism acceptance. Autism acceptance has two aspects: (a) how they perceive other people to accept them as an autistic individual (perceived acceptance) and (b) how they accept themselves as an autistic individual (self-acceptance). They were also asked to report types of coping strategies they use and rate their quality of life. We hypothesized that autism acceptance affects quality of life not only in a direct manner but also indirectly through their selection of coping strategies. What were the results of the study? We found that when autistic youths feel more accepted by others, they report better quality of life. Also, if they have a higher level of perceived acceptance, they tend to use engagement coping strategies, such as self-advocacy, to deal with stress, leading to better quality of life. Furthermore, if autistic youths accept themselves more, they tend to use more engagement coping and less disengagement coping, such as concealment and camouflaging, leading to better quality of life. What do these findings add to what was already known? Our findings confirmed the importance of autism acceptance in helping autistic youths achieving better quality of life. Also, we showed, in a scientific way, how autism acceptance impact quality of life directly and indirectly through the selection of coping strategies. What are potential weaknesses in the study? Our study sample does not represent the entire autism spectrum and diverse ethnic backgrounds. Most of the participants were White with relatively high education levels. Also, the use of online platforms to collect data limits the representativeness. How will these findings help autistic adults now or in the future? These findings may help us better understand the role of autism acceptance in achieving better quality of life and inform the development of effective transition services for autistic youths.
This co-produced study explores the experiences of autistic students regarding their transition to and enrollment at an Irish Higher Education Institution (HEI). Autistic students' experiences of belonging, acceptance, and support were explored, and the study was collaboratively conducted by autistic and non-autistic researchers at all stages of the research. A sample of autistic student participants (n = 14) took part in either flexible semi-structured interviews (n = 12) or text-based responses to the interview framework (n = 2). Interviews were conducted flexibly in accordance with participant preferences and communication needs. Data were analyzed using reflexive thematic analysis. The findings of this study reveal diverse experiences across the participants in higher education, emphasizing the need for inclusive approaches recognizing autistic neurology and differences to support belonging and acceptance in university. The transition experiences for some participants were challenging, with a lack of personalized and flexible support leading to anxiety and a lack of predictability. Participants also identified barriers while navigating college life, including hostile learning environments, a lack of understanding regarding autistic neurology among university staff and peers, inconsistent and inflexible pedagogical approaches used by academic staff, and stringent requirements to access disability support services. These barriers often led to students being unable to access support or choosing not to disclose their autistic status. Participants also found socializing and developing relationships with non-autistic peers challenging but reported that autistic student community groups, such as the Neurodivergent Society, were a very positive factor in supporting well-being, social acceptance, and a sense of belonging. Other supports were specialist support staff, such as the autism-friendly coordinator and occupational therapist at student services. The study highlights the importance of early guidance, systemic integration, and increased awareness among university staff. It underscores the role of structural support systems, such as specialist disability access routes into university and specialist support staff, in easing transitions and supporting predictability and acceptance. Community Brief Why is this an important issue? Understanding the transition experiences of autistic students to higher education institutions (HEIs) is crucial for fostering inclusivity and support. This co-produced study highlights the challenges faced and the need for tailored support systems. What is the purpose of the study? The study explores autistic students’ experiences transitioning to and enrolling in Irish HEIs. It focuses on their sense of belonging, acceptance, and support, using inclusive approaches and collaborative research methods. What did the researchers do? Autistic and non-autistic researchers collaborated equally. Flexible semi-structured interviews were conducted with 14 autistic students. Findings were analyzed using reflexive thematic analysis. What were the results of the study? The findings reveal diverse experiences, pointing to the need for inclusive practices that recognize autistic neurology. Key challenges include a lack of personalized support, inaccessible learning environments, and communication differences. Autistic student groups and specialist staff support well-being and belonging. What do these findings add to what was already known? These findings build on existing literature by offering specific insights into the challenges and supports autistic students experience in both transitioning to and enrolling in higher education. They provide insights for HEIs to implement inclusive practices, support mechanisms, and community-building initiatives. What are the potential weaknesses of the study? As a small-scale qualitative study, findings may not be generalizable across all HEIs or autistic students. How will these findings help autistic adults now or in the future? The study underscores the importance of fostering belonging and inclusion through early guidance, integrated support, and greater staff awareness. Structural mechanisms such as access routes and specialist staff are vital in easing transition and promoting acceptance.
There is an increasing demand for publicly funded research datasets to be made available for the research community. However, there are multiple issues associated with the use of accessible data, particularly in the Autistic community, where individuals have understandable reservations as to who is accessing these data, what the associated objectives are regarding the use of these data, and why there is insufficient follow-up to individuals who have offered their time to provide their data. These issues particularly extend toward brain imaging research, in which Autistic individuals have expressed long-standing ethical concerns as to how and why this research is performed. This perspective piece aims to outline concerns from the Autistic community in relation to both magnetic resonance imaging (MRI) and the functionality of the open-access scientific framework, utilizing these approaches as examples to outline discipline-wide concerns and barriers to ethical research. This work will also address a bias in research regarding who can reasonably tolerate an MRI scan as an Autistic person and whether certain Autistic characteristics are being disproportionally highlighted and/or suppressed through these research practices. Lastly, this perspective piece will focus on methods with which MRI, open-science philosophy, and general research disciplines can improve practice to conduct ethical autism research. Why is this topic important?: Over the past 20 years, we have seen a significant increase in autism research. However, this increase in research output has not always aligned with research aims and priorities of the Autistic community. Understanding and addressing Autistic people's concerns around research practice, including the use of brain imaging techniques such as magnetic resonance imaging (MRI) and the use of anonymized databases of brain images that are accessible to researchers, are required to ensure ethical research. Autistic individuals have historically faced medicalized and dehumanizing language by scientific communities, making it essential to prioritize their voices and needs in the research process.What is the purpose of this article?: This perspective piece aims to shed light on the ethical complexities surrounding autism research, focusing on the understandable concerns the Autistic community has regarding MRI techniques and publicly accessible brain imaging data. For instance, only some members of the Autistic community can take part in MRI scans due to overwhelming sensory aspects associated with the process. There are also many ways with which anonymized databases of brain images could potentially be misused, or used to harm the Autistic identity, such as conducting research focusing on "treating" autism. By exploring the in-depth perspectives of Autistic individuals, this article seeks to provide recommendations for researchers and clinicians to improve their practices and conduct autism-affirming research.What personal or professional perspectives do the authors bring to this topic?: The authors associated with this perspective piece are members of the Eating Disorders and Autism Collaborative (EDAC) research network, and one of the primary authors of this piece is Autistic, allowing this piece to consider a variety of lived experience and professional perspectives. EDAC conducted workshops with Autistic individuals and professionals to better understand their perspectives firsthand, which led to the generation of quotes for this article.What is already known about this topic?: Existing research has highlighted concerns the Autistic community have regarding the long-term use of their data, as well as how an Autistic experience of an MRI scan significantly differs relative to a non-Autistic experience. Broad concerns have been raised about the ethical implications of research practices, including the potential for data misuse, lack of representation, and medicalization of autism.What do the authors recommend?: The authors recommend several measures to improve MRI research and the use of accessible brain imaging data to make the practice more aligned with the priorities of the Autistic community. Recommendations include reframing research objectives to focus on support rather than treatment, enhancing communication during MRI procedures, and implementing more flexible consent procedures for sharing data.How will these recommendations help Autistic adults now or in the future?: By adopting these recommended practices, researchers can better respect the autonomy and preferences of Autistic individuals, leading to more inclusive and ethical research outcomes. This will not only aim to currently benefit Autistic individuals by ensuring their voices are heard but also aim to pave the way for more respectful and supportive research practices in the future.
Employment is an important factor contributing to the quality of life of autistic individuals. However, autistic people are substantially underrepresented in the workforce, and are more likely than non-autistic people to be in part-time/casual positions and/or in jobs for which they were overqualified. Current employment programs often cater to a limited range of autistic jobseekers. This project explored participants' perceptions of an autism-specific, client-led employment program, Autism EmployABLE, with respect to (1) the program's helpfulness and aspects that could be improved and (2) the clients' happiness, confidence, and feelings of independence after gaining employment. We employed a hybrid approach for content analysis of semi-structured interviews to explore the perspectives of 15 autistic clients, 6 family members, and 5 employers. Interview data revealed that almost all participants perceived Autism EmployABLE to be helpful, and that it aligned well with the Person-Environment-Occupation (PEO) Model of Occupational Performance, in that it addressed the interaction between person (e.g., interests, strengths), environment (workplace factors), and occupation (e.g., job tasks). Perceived benefits of the program included enhanced client confidence and independence, and improved outcomes compared with generic disability employment services. Suggested improvements included opportunities for clients to meet and share experiences, access to industry-specific mentoring, provision of written materials, and aptitude testing for specific roles. This study provides preliminary support for the benefits of Autism EmployABLE and highlights the importance of sourcing positions that match each client's skills and interests to achieve the outcome considered critical to employment success-good person-to-job fit. Why was this program developed?: Despite the many strengths that autistic people can bring to the workplace, they are more likely than non-autistic people to be unemployed or to work in part-time/casual positions and/or in jobs for which they were overqualified. We developed Autism EmployABLE to help autistic people find satisfying and sustainable employment that matches their skills and interests.What does the program do?: The program aims to support autistic jobseekers to find satisfying jobs by matching their interests, strengths, and support needs (the person) with characteristics of the workplace (the environment) and job tasks (the occupation). The program is staffed by professionals with autism-specific knowledge (e.g., psychologists, occupational therapists, teachers) and staff with experience in the vocational sector and marketing skills. The staff therefore have the expertise to work effectively with both clients and businesses. Clients take a leading role by setting their own employment goals and developing "roadmaps" to help them communicate about their strengths and support needs. The program supports clients to apply for open employment opportunities that suit their skills and interests.How did the researchers evaluate the new program?: We asked the autistic clients who accessed Autism EmployABLE, their family members, and employers to participate in an interview, which explored the helpfulness of the program in finding a job and navigating the workplace, satisfaction with job placements, and client well-being after finding employment. We asked about aspects of the program that they liked and aspects that could be improved.What were the early findings?: The findings suggest that a good person-to-job fit can be achieved by matching the skills, interests, and support needs of clients with the needs of businesses. Participants observed improvements in the clients' confidence and independence. They reported achievement of better employment outcomes than they had achieved through generic disability employment services. Suggested improvements included more opportunities for clients to meet and share experiences. Clients seeking employment in professions such as engineering or information technology (IT) would like access to mentors with profession-specific knowledge. One employer suggested aptitude testing for specific roles.What were the weaknesses of this project?: We are unsure whether the perspectives of the program reported here can be generalized to other cultures and communities.What are the next steps?: This study supports autism-specific, client-led employment programs that consider the unique skills and interests of autistic clients when finding a suitable job. Many of the clients and their family members perceived that the clients achieved more satisfying and sustainable employment through this program than through generic disability employment services. The next step would therefore be to provide more autistic jobseekers with access to this type of program.How will this work help autistic adults now or in the future?: If autistic people are supported to find employment that matches their skills and interests, they are more likely to find satisfying jobs and are more likely to be happy to continue working in these positions.
Language around autism plays a crucial role in shaping public attitudes toward autistic people. The use of identity-first versus person-first language and impersonal references to autism can affect how autistic people are perceived. These factors should impact the representation of autistic people in newspapers, where negative and stereotypical representations are often perpetuated. We asked five autistic people to judge the sentiment toward autism and autistic people in 1000 quotes from British newspapers (2011-2020). The coders, who did not know the newspaper title and time of publication, made their judgments based on two dimensions, warmth and competence, from the Stereotype Content Model (SCM). We examined the overall judgments of warmth and competence and considered variations in language context and terminology, such as the use of impersonal references to autism or identity-first and person-first language. We also examined potential differences between broadsheets and tabloids, left- and right-leaning newspapers, and changes over time. The majority of quotes from British newspapers fell under a low warmth and low competence area within SCM. Furthermore, impersonal references to autism tended to be rated lower in warmth and competence than references linking autism to an individual, whereas identity-first language was judged higher in warmth and competence than person-first language. Quotes from broadsheets were assigned similar warmth and slightly higher competence than quotes from tabloids. However, left-leaning and right-leaning papers did not differ regarding warmth and competence, and there were inconsistent changes over time. Our study confirms that the portrayal of autistic people in British newspapers tends to be negative. According to autistic raters, associating autism with a person and using identity-first language are linked to more positive representations. Although we found subtle variations in sentiment related to reporting style, our study shows little progress over time toward more positive portrayals. Community Brief Why is this an important issue? Newspapers frequently portray autistic people in a negative and stereotypical way, emphasizing their challenges and weaknesses instead of their needs and strengths. Also, newspapers frequently use language and terminology that do not respect how autistic people wish to be addressed. Newspaper language can have a negative impact on the mental well-being of autistic people and hinder their acceptance. What was the purpose of this study? This study looked at how autistic people perceive the language newspapers use to portray them. It also looked at how autistic people perceive the language of newspapers with different reporting styles (broadsheets vs. tabloids), political orientation (left- vs. right-leaning), and changes over time. What did the researchers do? We asked five autistic people to look at 1000 quotes about autism from British newspapers, published from 2011 to 2020. The autistic experts didn’t know which newspaper the quotes were from or when they had been published. They rated each quote based on two things: warmth and competence. Warmth referred to how much autistic people were portrayed as friendly, trustworthy, sincere, tolerant, and kind, whereas competence referred to how much autistic people were portrayed as intelligent, efficient, ingenious, knowledgeable, and powerful. The coders also indicated how confident they felt about these judgments. What were the results of the study? The autistic experts rated most quotes as having low warmth and low competence. Quotes referring to “autism” in a general way, without referencing autistic people, tended to be rated low on warmth and competence. Furthermore, quotes using identity-first language, for example, “autistic person,” tended to be rated higher in warmth and competence than those using person-first language, for example, “person with autism.” Quotes from broadsheets were seen as conveying similar warmth and slightly higher competence than quotes from tabloids. There was no difference between left- and right-leaning papers and no clear pattern of change over time. What do these findings add to what was already known? This study shows that, according to autistic raters, the recent British press portrays autistic people in a negative way. It also highlights the important role of terminology that the press uses to refer to autistic people. The findings provide subtle evidence that broadsheets offer a slightly more positive representation of autistic people than tabloids. But they challenge the idea that portrayals of autistic people in newspapers have become more positive over time. What are potential weaknesses in the study? One potential weakness is that the individual experts sometimes differed in how they felt about individual quotes. These differences, as well as potential differences between autistic and non-autistic people, should be examined in future research. How will these findings help autistic adults now or in the future? The findings suggest that newspapers should take steps toward representing autistic people in a more positive way, to shift attitudes toward autistic people in society. They also highlight the importance of language and terminology and that autistic people should be involved in guiding newspapers toward promoting more inclusive views.
Autistic individuals with intellectual disability remain significantly underrepresented in research, particularly in studies that capture their lived experiences through self-report methods. This systematic review critically examines existing research employing self-report methods in studies where the focus is on autistic adults who have intellectual disability, evaluating the scope of this research, the self-report measures used, and the extent of community involvement. We conducted a systematic literature review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched PsycINFO, Scopus, MEDLINE, ERIC, CINAHL, and Web of Science for studies published between January 2013 and July 2023. We conducted a narrative synthesis to evaluate study characteristics, the use of self-report measures, and the involvement of autistic individuals and their communities in the research process. Only 14 studies met the inclusion criteria. The majority focused narrowly on evaluating interventions, with little attention paid to exploring the broader lived experiences of autistic adults with intellectual disability. We identified 24 self-report measures, yet only two had been validated specifically for individuals with intellectual disability. Furthermore, less than half of the remaining measures reported the use of any adaptations or accommodations such as visual aids or simplified language. Alarmingly, community involvement was almost entirely absent, with no studies incorporating co-production with autistic individuals. This review reveals a critical and urgent need for autism research that genuinely includes and represents autistic adults with intellectual disability. It is imperative that future research prioritizes the development and rigorous validation of accessible self-report tools, expands its focus beyond intervention outcomes, and commits to the meaningful involvement of autistic individuals throughout the research process. Addressing these profound gaps is essential for building an equitable and inclusive body of knowledge that fully recognizes and responds to the diverse experiences within the autistic community. Why is this an important issue?: Autistic people with intellectual disabilities are often left out of research that tries to understand the experiences of autistic individuals. Because of this, their unique needs and challenges might not be fully understood or considered when creating support services. Most research relies on the opinions of parents, teachers, and clinicians instead of hearing directly from autistic people, especially those with intellectual disabilities.What is the purpose of the review?: This study aimed to look at research that directly asks autistic adults with intellectual disabilities about their own experiences. The researchers wanted to see how much research exists, what tools have been used to collect views, and whether autistic individuals and their communities are involved in the research process.What did the researchers do to review the literature?: The researchers reviewed studies from 2013 to 2023 that focused on autistic adults with intellectual disabilities. They looked at how the studies were done, the tools used to gather information, and how much autistic individuals were involved in the research.What studies did the authors find?: The review found 14 studies that met the criteria. Most of these studies were aimed at evaluating specific programs or treatments rather than exploring broader life experiences. Out of 24 tools used, only 2 were specifically designed for people with intellectual disabilities. There was very little involvement of autistic individuals in shaping the research. Many studies did not explain how they made the tools easy to use for people with intellectual disabilities.In summary, what did those studies show?: This study shows that there is still a big gap in research that includes autistic adults with intellectual disabilities. More work is needed to create better tools for gathering their views, and they should be more involved in the research process to make sure their voices are heard.What are the remaining gaps in the literature?: With just 14 studies identified that used self-report measures with autistic adults, it is clear that we need to know more about their views on a range of areas especially their support needs and priorities, and how to improve their quality of life, from their perspective.Based on this review, what do the authors recommend?: Future research should include these adults' own perspectives to understand their needs and priorities better. This means using methods that allow them to share their experiences directly instead of relying mainly on caregivers or others to speak on their behalf. Researchers also need to use self-report measures more often, especially for topics such as quality of life and well-being, where it's essential to capture the person's own viewpoint.
Autistic individuals report high levels of interest in pursuing and maintaining romantic relationships but indicate fewer and less satisfying relationships when compared with non-autistic populations. In this mixed-methods study, we investigated the self-identified factors that contribute to successful romantic relationships for autistic adults with the additional goal of understanding if and how their partners' neurotypes may influence relationship satisfaction. We compared levels of relationship satisfaction among 106 autistic individuals by categorizing each participant into one of three groups based on the specific neurotype of their partner: (1) autistic/autistic (A/A) dyads; (2) autistic/neurotypical (A/NT) dyads; and (3) autistic/non-autistic but neurodivergent (A/ND) dyads. All participants completed a series of online surveys to gather information about their autistic traits, overall relationship satisfaction, reciprocal communication and support, and perceived impact of autism on relationships. Across the three dyads, participants reported similar levels of relationship satisfaction, and we found no statistically significant differences when comparing the mean satisfaction of each sample group. Participants indicated a wide variety of positive and negative relational aspects, with a few themes changing in frequency based on partner neurotype. Participants with autistic partners tended to focus on an inherent and deep sense of understanding when discussing the positive aspects of their relationships, while those with non-autistic partners were more likely to discuss the presence of mutual support and accommodation. In addition to some differences in reported themes, participants tended to report that their autistic traits positively impacted satisfaction in A/A dyads, while those in A/NT and A/ND dyads tended to report that their autistic traits posed challenges in their relationships. The results of this study indicate that the neurotype of an autistic individual's partner may influence some of the reported positive and challenging aspects of their relationships. However, survey results indicate that autistic populations generally find comparable levels of satisfaction in romantic relationships irrespective of neurotype, which suggests that while partner neurotype may shape the enabling and barring factors for relationship success, it does not directly affect the overall health of a relationship. Finally, how an autistic individual perceives the impact of autism on their relationship may be affected by the neurotype of their partner. Why is this an important issue?: Many autistic folks seek out and thrive in romantic relationships, but studies report that autistic people experience lower relationship satisfaction than non-autistic people. Despite this, the autism research field has made little progress toward understanding (a) why this is the case and (b) how we can better support autistic individuals who are navigating romantic relationships. To best understand what autistic people seek in relationships, we created a space where autistic participants could share their experiences without comparison with those of non-autistic people.What was the purpose of this study?: We contributed to the current body of literature by learning more about what autistic people seek in relationships. We also wanted to see what they may struggle with and if these factors are influenced by whether their partner is neurotypical (referring to someone whose brain works in a way that is socially "typical"), neurodivergent (broadly referring to someone whose brain works differently from what is considered "typical"), and/or autistic. In doing this, we hope to help develop more effective ways of supporting autistic individuals who seek romantic connections.What did the researchers do?: The lead researcher, J.K., developed the project based on her experiences navigating romantic relationships as an autistic person. She recruited 106 autistic participants to complete a series of surveys regarding relationship satisfaction. Then, participants completed free-response questions about the most positive and negative parts of those relationships. She asked how they felt autism affected their relationships and gathered these components to identify what increased and decreased relationship satisfaction.What were the results of the study?: We found that autistic people are similarly satisfied in their relationships regardless of whether their partners are autistic or not. Despite this, participants consistently identified different positive and challenging factors within their relationships that tended to align with the neurotype of their partners. We found an interesting link between how autistic people view positive and negative factors in successful romantic relationships and their partners' neurotypes.What do these findings add to what was already known?: We added to a broad body of knowledge about relationship satisfaction by including a greater, more detailed consideration of autistic adults. Instead of comparing survey responses between autistic and non-autistic participants, we compared how autistic people viewed relationship satisfaction based on if their partners were autistic, non-autistic but still neurodivergent, or neurotypical.What are potential weaknesses in the study?: Potential limitations include the following: (1) we recruited a low number of male-identified participants, (2) we did not collect co-occurring diagnoses and conditions from the autistic participants, and (3) we did not verify partner neurotype.How will these findings help autistic adults now or in the future?: Through this project, we were able to highlight positive communication and interpersonal skills among autistic adults. We hope that the results of this study will help autistic people and their partners find some peace and community by reading about others with similar relationship experiences. We also hope to help them further understand what factors might serve as potential strengths and weaknesses in their relationships.
Autistic adults are underrepresented in the employment market, and those in work are commonly underemployed. Our study aimed to gain an understanding of autistic adults' experiences of unemployment and underemployment. Eight autistic adults who self-identified as currently unemployed or underemployed who were actively seeking to change their employment status participated in semi-structured interviews, analyzed using interpretative phenomenological analysis. Four group experiential themes were identified: feeling paralyzed (the past weighs heavy; fragile self-confidence); powerlessness (lack of agency; systemic support failures); negative perceptions (feeling misunderstood; fear of judgment; pressure to meet societal expectations); and recognizing our needs (managing mental health difficulties; importance of self-understanding). Participants felt paralyzed by employment experiences, which impacted their confidence to progress with their career aspirations. Autistic people felt misunderstood, judged, and powerless within support systems, which had implications for their mental health. Participants recognized the importance of managing their mental health needs during times of unemployment and underemployment via self-care and seeking psychological support. Putting resource into understanding, acknowledging, and addressing processes within and around employment should be priorities for policy makers if they are serious about improving support to help autistic people find and stay in work. Why is this an important issue?: Autistic people are less likely to have a job than non-autistic people. Autistic people who do have a job are likely to work fewer hours than they want, be in a job that that doesn't fully use their skills or education, or not get paid enough to meet their basic needs.What was the purpose of this study?: To communicate autistic adults' experiences of unemployment and underemployment to improve understanding of what this is like and what may help.What did the researchers do?: We developed interview questions in collaboration with two autistic adults. We interviewed eight autistic adults who identified as being unemployed or underemployed who were actively seeking to change their employment status. We asked them about the impact their experiences had on their day-to-day lives. We identified themes from what the interviewees said using interpretative phenomenological analysis (IPA).What were the results?: Interviewees described feeling paralyzed and stuck at their current employment status because of previous traumatic experiences both within the workplace and around employment processes. They felt misunderstood, judged, and powerless within systems surrounding employment. This impacted their mental health and ability to return to work or progress within their career. Most participants were discovered autistic in adulthood, which increased self-understanding, awareness of employment needs, and the importance of managing their well-being.What do these findings add to what was already known?: The findings demonstrate that prior negative experiences around employment can have profound, enduring effects on autistic adults. This study highlights the challenges faced by autistic adults throughout the employment process and the impact these experiences have on their well-being and ability to progress back into work or within work. Autistic adults experienced a lack of understanding of both autism in general and a lack of empathy toward them as individuals on the part of the employer and colleagues. Further, there was no evidence of responsibility being taken by the employer to mitigate their gaps in knowledge. There is a clear need to work toward practical solutions as highlighted within this study. As such, there is a need for investing resource into understanding, acknowledging, and addressing insufficient and inadequate employment processes, both pre- and post-recruitment.What are potential weaknesses in the study?: Our findings reflect the experiences of a small group of people, so their experiences will not apply to everyone. The majority of the interviewees were discovered autistic in adulthood, and there is a lack of diversity, in that the interviewees were well educated, mostly over the age of 45 years, and mostly White British.How will these findings help autistic adults now or in the future?: This study helps us better understand the experiences of unemployed and underemployed autistic adults and the barriers they face. Our findings highlight the importance of putting resource into understanding, acknowledging, and addressing these issues around employment for autistic people. This will be imperative for organizations and policy makers if they are serious about improving the employment rates and addressing needs of autistic people.
The number of autistic students enrolling in postsecondary education is rising, accompanied by an increase in research and subsequent reviews (i.e., meta-analyses, systematic and scoping reviews) describing the experiences of autistic postsecondary students. We summarize the current state of the literature by describing the characteristics (e.g., publication year, language use), evaluating the quality, and mapping the domains and findings of reviews examining autistic postsecondary students to inform future directions of this research. Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for systematic reviews and meta-analyses were followed. Reviews were included if they were (1) published between January 2000 and December 2023; (2) focused on postsecondary students who had a diagnosis of autism or self-identify as autistic; and (3) focused on experiences of autistic students in postsecondary settings. Consistent with other reviews of reviews, articles were coded for quality, including publication bias. Thematic analysis was used to extract themes from reviews. Out of 1575 articles, 26 published reviews were included. Over half the reviews were published within the past 5 years (i.e., 2019 onward; k = 14; 54%) and were systematic or scoping reviews (k = 20; 77%), while half were conducted by researchers from the United States. The quality of systematic or scoping reviews (k = 20) was mostly acceptable; however, only three assessed publication bias and eight appraised study quality. Six themes were constructed from coded information identifying gaps, main findings, and review strengths as follows: (1) the need for methodological rigor; (2) the need for evidence-based, individualized supports; (3) the need to consider autistic students as a heterogenous population with diverse academic experiences; (4) the need to understand nonacademic factors impacting academic experiences; (5) research addressing or highlighting relevant gaps; and (6) research guided by lived experience and frameworks. We summarize key findings from the current literature and make relevant recommendations to move the research on autism in postsecondary forward. Community Brief Why is this an important issue? The number of autistic people attending higher education (i.e., college, university) is on the rise, and so is the number of studies on autistic student’s experiences in postsecondary settings. To promote autistic student’s success in higher education, we need to have a good understanding of the current state of the research to identify gaps in our knowledge that can help inform future directions. What was the purpose of this study?  To systematically summarize the current existing research to determine where there are gaps in knowledge and what future research should focus on. Specifically, this is a review of systematic reviews (i.e., systematic summaries of scientific studies) examining the experiences of autistic postsecondary students. What did the researchers do?  The researchers conducted a search for all review articles on the postsecondary experiences of autistic students since 2000, evaluated the quality of the research, and summarized key themes that arose from these reviews.  What were the results of the study?  We included 26 reviews in our analyses. Most reviews were conducted within the past 5 years and focused on the challenges and needs of autistic students in postsecondary schools, the availability or effectiveness of supports for these students, and the transition period into postsecondary. Our results suggest that there are few evidence-based approaches to meet the unique support needs of autistic students. The highly varied experiences of autistic people require further research to inform wrap-around, effective, individualized supports that emphasize both academic and nonacademic aspects, and promote validating and safe environments to support autistic students’ success. What do these findings add to what was already known?  To our knowledge, this is the first review of reviews on autistic students' experiences in higher education. This article revealed that most systematic reviews on this topic do not examine gray (i.e., unpublished) literature, nor do many evaluate the quality of primary research. Furthermore, most existing reviews continue to be conducted in Western countries, use identity-first language (i.e., students with autism), and do not include autistic voices in their methodology. These gaps suggest that future reviews need to (1) better account for unpublished research, (2) critically evaluate the quality of the primary literature, (3) be also conducted by researchers outside of Western countries, (4) use person-first language that is preferred by the autistic community (i.e., autistic students), and (5) empower autistic people by involving them in the development of these reviews. How will these findings help autistic adults now or in the future?  Our findings point to specific ways to strengthen the research being conducted in this field to encourage the inclusion of autistic voice and researchers, promote validating and safe campuses, and conduct research that reduces inequities faced by autistic students.
Central sensitivity syndromes (CSS) are a group of conditions, including fibromyalgia, migraine, and others, that are thought to share a common mechanism of central sensitization-that is, pain and hypersensitivity that originate in the central nervous system. Research suggests that autistic adults may be more likely to have a CSS, and that autistic traits, sensory sensitivity and anxiety, all contribute to an association. This study aimed to explore whether autistic camouflaging could also be related to CSS symptoms in autistic and nonautistic adults. In addition, we completed an analysis of illness perceptions to determine whether autistic and nonautistic people may experience chronic illness differently. The sample comprised 504 adults (88 men, 416 women) with clinical diagnoses of autism, CSS, both diagnoses or neither (i.e., a comparison group), who completed online self-report validated questionnaires, including the Autism Spectrum Quotient, Central Sensitization Inventory, Sensory Perception Quotient, the Camouflaging Autistic Traits Questionnaire, the Brief Illness Perceptions Questionnaire, the Patient Health Questionaire-9, and Generalized Anxiety Disorder-7. Camouflaging significantly predicted CSS symptoms in this sample. Autistic people with a CSS had higher camouflaging scores (mean: 130.28) than the other diagnostic groups, with a significant difference between the comparison and the CSS-only group (p < 0.001). The autism-only and CSS-only groups had significantly higher camouflaging scores than the comparison group (p < 001) but not from each other (119.35 vs. 107.94). Autistic people reported a significantly more negative effect of chronic illness on their life (f (1333) = 5.289 p = 0.022); there were few other differences in illness perceptions between autistic and nonautistic people with a CSS. Autistic camouflaging is associated with CSS symptoms. Autistic people who receive a CSS diagnosis are particularly at risk for greater illness-related disability, including poorer quality of life and mental health. Why is this an important issue?: Lots of research has demonstrated that autistic adults are more vulnerable to poor physical health and chronic illness. Autistic people seem to be more likely to have central sensitivity syndromes (CSS). Conditions listed under the CSS umbrella include fibromyalgia, irritable bowel syndrome, and migraine. These conditions are considered to share a common mechanism of "central sensitization," in which the neural signals in a person's brain and spinal cord become amplified, causing several symptoms, including pain and sensory hypersensitivity, fatigue, and brain fog. We do not have a good understanding of why CSSs are common in autistic people, or what impact CSSs have on autistic people's lives.What was the purpose of this study?: We wanted to explore how some psychological or social factors in people's lives might differ between autistic and nonautistic people with and without a CSS. We were particularly interested in whether there was a relationship between camouflaging, which is when people use social strategies and techniques to hide their autistic traits, and CSS symptoms. We also wanted to explore whether autistic and nonautistic people think about and perceive chronic illness differently.What did the researchers do?: We used data from 504 online survey participants to compare social camouflaging scores between autistic and nonautistic people with and without a CSS. We also explored group differences in autistic and nonautistic illness beliefs between a subset of people who all had a CSS diagnosis.What were the results of the study?: While autistic people camouflaged the most, nonautistic people with a CSS had higher camouflaging scores than the comparison group (nonautistic people without a CSS). This could suggest that the CAT-Q, the measure used to explore camouflaging, may also be capturing techniques that nonautistic people use in everyday life to manage others' impressions of them, such as through concealing symptoms and effects of chronic illness. Alternatively, it could suggest that a significant number of autistic people receive a CSS diagnosis before autism is recognized, and that diagnostic overshadowing could be happening-that is, traits and experiences related to autism could be missed or misattributed by clinicians to an already diagnosed CSS. Autistic people with a CSS also reported a greater impact of illness on their life, even though the number of symptoms they experienced did not differ significantly from nonautistic people with a CSS. This could mean that, in addition to autistic people being more likely to experience chronic illness, the impact of chronic illness may be greater on autistic people than for nonautistic people.What do these findings add to what was already known?: While it is known that autistic people are more prone to physical ill health, these findings add to our understanding of the association between autism and CSS. They also suggest that underdiagnosis of autism and/or diagnostic overshadowing could occur in people with both CSS symptoms and autistic traits, and emphasize the heavy impact of chronic illness on autistic quality of life.What are potential weaknesses in the study?: The participants were recruited online with a large proportion of women responding, and more nonautistic people with a CSS than autistic people.How will these findings help autistic adults now or in the future?: These findings draw attention to the experience of autistic people with a chronic illness and suggest future directions for research into autism and co-occurring conditions.
Nonsuicidal self-injury (NSSI) affects many autistic individuals, and has been linked to suicidality in this group. It has been closely linked to difficulties with intrapersonal emotion regulation, but a role of interpersonal emotion regulation processes in NSSI has been underexplored. Empathic disequilibrium is a state of imbalance between a person's cognitive empathy (CE) and emotional empathy (EE). We recently found that autistic people exhibit heightened EE relative to CE, consistent with their firsthand reports of hypersensitivity to the emotions of others. Because this kind of empathic imbalance is associated with hyperarousal and emotional reactivity, we hypothesized that it might increase the risk of NSSI, which often occurs as a means of trying to regulate overwhelming or distressing emotions. We measured CE, EE, emotional reactivity, and NSSI behaviors in 304 autistic and 289 nonautistic participants, and used polynomial regression with response surface analysis to examine empathic disequilibrium as a predictor of emotional reactivity and engagement in NSSI. Replicating previous research, individuals with an autism diagnosis were more likely to show a pattern of EE-dominance (OR = 4.51 [2.66, 7.63], p < 0.001), although they did not differ significantly in overall empathy levels. While empathic disequilibrium was associated with NSSI in autistic and nonautistic people, the nature of these pathways differed between groups. In autistic people, empathic disequilibrium toward EE-dominance was associated with a higher incidence of NSSI through emotional reactivity. In contrast, for nonautistic individuals, the incidence of NSSI was associated with overall empathy and, when accounting for emotional reactivity, with empathic disequilibrium toward CE dominance. While future studies should investigate the direction of relationships with longitudinal designs, these findings highlight different mechanisms for NSSI in autistic and nonautistic people. They corroborate growing evidence that the relative imbalance between empathic abilities may be relevant for meaningful outcomes, such as psychopathology. Community Brief Why is this an important issue? Autistic people have told us that they feel the emotions of other people strongly. Indeed, our group has found that being autistic is associated with having relatively higher emotional empathy (EE) than cognitive empathy (CE). EE is the ability to share the emotional states of others. CE is the ability to identify how someone else is feeling. When your EE is stronger than your CE, you can be easily overwhelmed by the emotions of other people. This is because normally, your CE acts as a kind of regulatory force to dampen down your emotional response to the emotions of others. It is extremely important that we correct the stigmatizing myth that autistic people lack empathy. It is also important to look at negative outcomes that could be related to feeling the emotions of others so strongly. One such outcome might be self-injury, which often occurs when people are trying to manage overwhelming emotions. This is a common behavior in autistic people and is associated with suicide, so it is important to understand it. What was the purpose of this study? We wanted to see whether we could replicate the same pattern of empathic disequilibrium, specifically higher EE than CE, in autistic people. We also wanted to see whether this pattern was associated with self-injury, and whether this was because people with higher EE tend to be emotionally reactive (experience emotions strongly). What did the researchers do? We conducted an online survey of 304 autistic and 289 nonautistic people. They completed questionnaires measuring EE and CE, emotional reactivity, and self-injury. We then performed an analysis to see whether relatively higher levels of EE than CE could predict emotional reactivity, and through that, self-injury. What were the results of the study? We found that being autistic was associated with having relatively higher EE than CE, but not having lower empathy overall. This state of EE-dominant empathic disequilibrium was related to being more emotionally reactive, and through this, with greater incidence of self-injury in autistic people. Interestingly, these relationships seemed to work differently in nonautistic people, who might have different risk factors for self-injury. What do these findings add to what was already known? These findings confirm that autism is not characterized by lower empathy, but by relatively higher EE than CE. They corroborate firsthand reports from autistic people who express how unpleasant it can be to experience other people’s emotions so strongly. Our findings suggest that this pattern of higher EE to CE may be associated with negative outcomes related to emotional dysregulation, such as self-injury. What are potential weaknesses in the study? We cannot confirm the direction of relationships between the variables in our study. Our sample is not representative of all autistic people. How will these findings help autistic adults now or in the future? These findings challenge the myth that autistic people lack empathy: in fact, they are hyperresponsive to the emotions of others, and this may be bad for their mental health.