1. Akhtar N, Dinishak J, Frymiare JL. Still Infantilizing Autism? An Update and Extension of Stevenson et al. (2011). Autism in adulthood : challenges and management. 2022; 4(3): 224-32.

BACKGROUND: Stevenson et al. (2011) examined photographs and language used to represent autism on chapter websites for the Autism Society of America, autism charity websites, movies, television shows, fictional books, and U.S. new stories and found that they overwhelmingly used children to represent autism. METHODS: Using Stevenson et al.’s methods, we tested the hypothesis that, a decade on, these same sources would now include more representations of autistic adults. We statistically compared our findings with theirs. RESULTS: On the chapter websites of the Autism Society of America and in fictional books, the hypothesis was supported in that there were more representations of adults (19%-20%) than in the original study (5%-9%), but there were still far more representations of children than of adults. In movies, television shows, and U.S. news stories, there were equal numbers of representations of autistic adults and autistic children. CONCLUSIONS: These findings suggest a move away from infantilizing autism in some domains, but they rely on a narrow construal of « infantilizing »: the underrepresentation of autistic adults in media. However, even when autistic adults are represented, they may still be infantilized in various ways. Future research will need to examine the impact of infantilizing media on both autistic and non-autistic people, and other ways in which these representations are limited (e.g., gender and race/ethnicity). WHY IS THIS AN IMPORTANT ISSUE? A prior study showed that most representations of autistic people in the United States portray children. It is important that the public not perceive autism as a disability that only affects children. If autistic adults are not adequately represented, they and their needs become invisible. WHAT WAS THE PURPOSE OF THIS STUDY? We wanted to see if representations of autistic adults in the United States have increased in the decade since the original study was published. WHAT DID THE RESEARCHERS DO? We counted the numbers of representations of autistic adults and autistic children on the chapter websites of the Autism Society of America, autism charity websites, in fictional books, movies, and television shows with autistic characters, and in U.S. news stories that mentioned autistic people. We then compared these numbers with the numbers from the original study. WHAT WERE THE RESULTS OF THE STUDY? On the chapter websites of the Autism Society of America and in fictional books, there were more representations of adults than in the original study, but there were still far more representations of children than of adults. In movies and television shows, as well as U.S. news stories, the number of representations of autistic adults was equal to those of children. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? These findings show that there has been some progress in increased representations of autistic adults in the United States. Our study cannot tell us what exactly has contributed to this change, but we speculate that the rise of autistic self-advocacy is the most likely candidate, as it has trickle-down effects such as hiring of autism consultants for movies and television shows and journalists’ increased use of autistic self-advocates as sources. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? Our analyses, as in the original study, are limited to depictions of autism in the United States and examine only one aspect of representation (age). Gender, race/ethnicity, and other dimensions of autistic representations need to be examined in future research. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? Knowing about representation of autistic adults is important because of the many potential benefits of accurate representation, such as access to accommodations and resources beyond childhood (e.g., jobs, healthcare). Positive media representations may also help reduce stigma and stereotypes. eng.

Lien vers le texte intégral (Open Access ou abonnement)

2. Baczewski LM, Pizzano M, Kasari C, Sturm A. Adjustment Across the First College Year: A Matched Comparison of Autistic, Attention-Deficit/Hyperactivity Disorder, and Neurotypical Students. Autism in adulthood : challenges and management. 2022; 4(1): 12-21.

BACKGROUND: Although the number of autistic students attending higher education has grown substantially in recent decades, little is known about factors that support their retention and persistence in college. First-year experiences and adaptability to the college environment greatly impact students’ decisions to remain enrolled. Despite the importance of first-year adjustment to persistence and retention, few studies have examined the adjustment experiences of first-year autistic students compared to those of matched nonautistic students. METHODS: This study used national survey data to compare the first-year college adjustment experiences of 222 freshmen, including 74 self-identified autistic students, 74 students with attention-deficit/hyperactivity disorder (ADHD), and 74 students without diagnoses (referred to as neurotypical; NT), matched on mental health and demographic characteristics. Students were compared on measures of academic, social, emotional, and institutional adjustment at the end of freshman year. Separate general linear models were used to investigate predictors of positive self-reported first-year adjustment. RESULTS: Autistic students reported significantly lower levels of social self-confidence than their NT and ADHD peers at the end of freshman year. On all other adjustment domains, students in the autism, ADHD, and NT groups did not significantly differ. Autistic students were not significantly different from their ADHD and NT peers in terms of satisfaction with their college experience or sense of belonging to their institution. Social factors, including social self-confidence and ease of making friends, emerged as important contributors to positive first-year adjustment outcomes across all groups. CONCLUSIONS: When controlling for demographic factors and mental health characteristics entering college, autistic students do not significantly differ from their NT and ADHD peers on several domains of college adjustment. Future studies should further investigate the impact of mental health and student characteristics on college trajectories and outcomes for autistic students. WHY IS THIS AN IMPORTANT ISSUE? Although more autistic young people are enrolling in college, many do not finish their degrees. Adjusting more easily to college life in the first year can encourage students to stay enrolled. Not much is known about adjustment for autistic college students, in particular compared with their nonautistic peers. WHAT WAS THE PURPOSE OF THIS STUDY? Our goal was to understand whether there were differences in how the three groups of first-year students adjust to college. Those three groups included the following: (1) autistic students, (2) students with attention-deficit/hyperactivity disorder (“ADHD”), and (3) neurotypical (“NT”) students (those who do not identify as having a disability). We wanted to see if the groups were similar or different in their first-year experiences. We also wanted to know what factors help autistic students adjust and feel comfortable during their first year. WHAT DID THE RESEARCHERS DO? We compared survey responses about first-year adjustment across three groups of students. We know that students’ background can affect their experience in college, so we matched each autistic student to one student with ADHD and one NT student so that they had similar background characteristics (e.g., gender and high school test scores). We compared the groups on campus, academic, emotional, and social experiences during the first year of college. Lastly, we determined which factors were most important for the successful first-year adjustment of autistic college students. WHAT WERE THE RESULTS OF THE STUDY? Autistic students were less confident socially than their ADHD and NT peers but were not significantly different from their peers on many other domains, including satisfaction with their college experience. Having more social self-confidence and making friends more easily were important to the first-year adjustment of all students. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? While previous studies looked at academic adjustment, this study adds information about the social, emotional, and institutional adjustment of autistic college students. WHAT ARE THE POTENTIAL WEAKNESSES OF THE STUDY? We used surveys that were not specifically designed for autistic and other neurodivergent people. Students who dropped out during their first year were not included in this study, and so, our findings only apply to students who completed their first year. There were a relatively small number of students in each group, which may have made it harder for us to see the differences in how these groups adjust to college. Lastly, our sample does not include students enrolled in 2-year colleges and is not representative of the racial/ethnic and gender diversity of the autistic community across the United States. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? These findings can guide colleges in choosing which resources to focus on for first-year students. Our results show that autistic students may benefit from more supports around social self-confidence during their first year of college. Mental health is another area that is important for autistic students and their success in college, and future studies should explore this topic more. eng.

Lien vers le texte intégral (Open Access ou abonnement)

3. Brosnan M, Adams S. Adapting Drug and Alcohol Therapies for Autistic Adults. Autism in adulthood : challenges and management. 2022; 4(3): 214-23.

BACKGROUND: Autistic people may be at a higher risk of drug and alcohol misuse than the general population. Autistic people, however, are under-represented within drug and alcohol support services. This is the first survey of drug and alcohol therapists’ perceptions of current service provision for autistic clients and recommendations for reasonable adjustments that therapists can make to enhance successful outcomes. METHODS: We conducted an online survey of 122 drug and alcohol therapists, exploring therapists’ demographics, training and experience with autistic clients, approaches and adaptations used with autistic clients, and therapists’ confidence with autistic clients. Within two focus groups, 11 members of the autistic and broader autism (e.g., family members, professionals) communities reflected on the reasonable adjustments reported by therapists. RESULTS: Most therapists had autistic clients and most therapists had received no autism-specific training. Alcohol misuse was the most common presenting issue, and most therapists reported that treatment outcomes were less favorable for autistic clients than for other groups. Therapists perceived that barriers to successful outcomes were (1) a lack of autism-specific training, (2) a need to adapt therapy for autistic clients, and (3) a lack of shared perspective between the therapist and the autistic client. Previous research has identified a range of reasonable adaptations and, when asked, therapists were moderately confident in their ability to deliver these. Members of the autistic and broader autism communities coproduced guidance detailing how therapists can best adapt their practice for autistic clients including how to structure sessions and the language to use within sessions. CONCLUSION: This study highlights a need for practical and theoretical training for drug and alcohol therapists to support successful adaptation to current service provision for autistic clients and to develop a shared perspective on the desired aims and outcomes of the therapeutic process. WHY WAS THIS STUDY DONE? Autistic adults may be at greater risk for consuming drugs and alcohol to harmful levels compared with nonautistic adults. Autistic adults seeking support for drug and alcohol use report that treatment programs for reducing drug and alcohol use do not meet their needs. WHAT WAS THE PURPOSE OF THIS STUDY? This study aimed to look at the skills, experience, and confidence of drug and alcohol therapists in working with autistic adults and what adaptions they are making to support autistic service users. WHAT DID THE RESEARCHERS DO? Through an online questionnaire, the researchers asked 122 drug and alcohol therapists about their experiences with autistic clients (such as what issues they presented with), their autism training, and any perceived barriers or adaptations made to their service. Researchers also asked the therapists how confident they were to work with autistic clients and how successful their treatment was when compared with other client groups. Through two focus groups, the researchers then asked members of the autistic and broader autism (e.g., family members, professionals) communities to reflect how the reasonable adaptions reported by the therapist could be most effective for the autistic community. WHAT WERE THE RESULTS OF THE STUDY? Most therapists had autistic clients and most therapists had received no autism-specific training. Alcohol was the most reported misused substance that therapists working with autistic adults encountered. Most therapists also reported that treatment outcomes were less favorable for autistic clients than for other groups. Therapists identified lack of training as a barrier to providing support for autistic adults. Therapists suggested that a one-size-fits-all approach was not helpful for this group and most were moderately confident that they would be able to deliver adapted therapy to autistic clients. Members of the autistic and broader autism communities developed guidance for therapists to implement effective adaptations for autistic clients. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? This was the first survey of drug and alcohol therapists regarding their service provision for autistic clients. The findings highlight the need for therapists to be trained in how to adapt support and treatment to meet the individual needs of autistic clients. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? One limitation of this study is the convenience sample. This may limit how we can generalize the findings. By asking specifically about autistic clients, we may have biased responses from therapists who have worked with autistic adults. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? The findings from this study highlight that treatment programs for drug and alcohol misuse do not consider the needs of autistic adults. However, they also suggest that various approaches and adaptions can be made to support autistic clients. In addition to supporting adaptions made by therapists, the guidance developed could be a useful framework for autistic clients to discuss their session-support needs with therapists. Future research should look at the effectiveness of these adaptions in improving treatment outcomes for autistic clients. eng.

Lien vers le texte intégral (Open Access ou abonnement)

4. Byrne K, Sterrett K, Elias R, Bal VH, McCauley JB, Lord C. Trajectories of Seizures, Medication Use, and Obesity Status into Early Adulthood in Autistic Individuals and Those with Other Neurodevelopmental Conditions. Autism in adulthood : challenges and management. 2022; 4(2): 110-9.

BACKGROUND: Physical and psychiatric health conditions affect the lives of many autistic adults. However, relatively little is known about individual trajectories in autistic individuals’ physical and mental health from adolescence to adulthood. METHODS: This study uses a well-characterized longitudinal sample (n = 253) to investigate rates of seizures, medication use, and obesity, from early adolescence (age 10 years) into adulthood (age 30 years). Within this sample, 196 participants were diagnosed with autism spectrum disorder (ASD), whereas the remaining 57 participants never received an ASD diagnosis, but, rather, were diagnosed with other neurodevelopmental conditions. Data were collected through parent report questionnaires and in-person interviews and assessments. RESULTS: Seizure onset continued well into adulthood, with two individuals experiencing their first seizure at the age of 25 years. Seizures and neuropsychiatric medication use were both higher for those with lower intelligence quotient (IQs). In addition, medication use increased over time for these individuals, whereas those with higher IQs saw a reduction in medication use with age. Between the ages of 15 to 30 years, the predicted probability of medication use increased from 82% to 88% for those with lower IQs and decreased from 37% to 13% for those with higher IQs. Collectively, almost 70% of all participants in this study were classified as either overweight or obese. Body mass index (BMI) increased throughout adulthood, especially for those with higher IQs. The steepest increase in BMI over time occurred for those with higher IQs who also took antipsychotic medications. CONCLUSION: Overall, continued risk for developing seizures, high rates of neuropsychiatric medication use, and significant and increasing rates of obesity from adolescence to adulthood underscore the importance of monitoring health issues in autistic individuals and those diagnosed with other neurodevelopmental conditions throughout the lifespan. WHY WAS THIS STUDY DONE? Autistic individuals and those diagnosed with other neurodevelopmental conditions are at risk for many physical health issues from adolescence to adulthood. This includes, but is not limited to, seizure disorders, high rates of medication use, and obesity. Yet, not much longitudinal research exists measuring these health issues throughout the lifespan and, especially, in adulthood. WHAT DID THE RESEARCHERS DO? The researchers analyzed data from a sample of 253 individuals who lived in North Carolina, Michigan, and Illinois. This sample was recruited almost 30 years ago, beginning the study when they were roughly 2 years old. Some participants had an autism spectrum disorder diagnosis, and some did not, but instead had other neurodevelopmental conditions. The researchers measured changes in medication use, height, and weight beginning in early adolescence (age 10 years) into adulthood (age 30 years). The researchers also tracked seizure occurrences across the life span (beginning at age 2 years up until age 30 years). WHAT WERE THE RESULTS OF THE STUDY? In adulthood, this sample showed high rates of obesity and medication use. For example, almost 70% of this sample was classified as either overweight or obese. In addition, 55% of this sample was taking at least one neuropsychiatric medication in adulthood, and 22% of this sample was taking three different types of medication at the same time. Individuals with higher and lower intelligence quotient (IQs) had different findings over time: obesity increased throughout adulthood for those with higher IQs and medication use increased throughout adulthood for those with lower IQs. Seizures first developed for a group of individuals in adolescence and adulthood. Two individuals experienced their first seizure as late as 25 years of age. WHAT DO THESE FINDINGS ADD TO WHAT IS ALREADY KNOWN? Research, and especially longitudinal research, on physical health in autistic adults is limited. Although we know that autistic individuals generally experience high rates of obesity, seizure disorders, and medication use, less is known about how these physical health issues change over the lifespan. This study has provided useful information regarding how certain physical health issues change over time, and who these physical health issues impact the most in adulthood. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? The findings in this study identified that, in adulthood, autistic adults experience high rates of physical health issues, including increasing rates of obesity and medication use for certain populations. These findings confirm how important it is for autistic adults to have access to quality health care across the lifespan. We hope that, with these findings in mind, caregivers and health professionals will work to ensure that autistic individuals, from childhood through adolescence and adulthood, will have access and assistance in monitoring these ongoing and persistent health problems. eng.

Lien vers le texte intégral (Open Access ou abonnement)

5. Cage E, Cranney R, Botha M. Brief Report: Does Autistic Community Connectedness Moderate the Relationship Between Masking and Wellbeing?. Autism in adulthood : challenges and management. 2022; 4(3): 247-53.

BACKGROUND: Masking involves blending in or covering a stigmatized identity, to avoid discrimination and to « pass » within society. Autistic people often report masking, both intentionally and unintentionally, to get by in social situations. Autistic people who report high rates of masking also tend to experience poorer mental health. It is important we understand whether there are variables that can protect against the negative effects of masking. One such potential variable is autistic community connectedness (ACC)-being part of and belonging to the autistic community. Past research suggests there are benefits for autistic people socially connecting with other autistic people. We investigated whether ACC could moderate the relationship between masking and wellbeing. METHODS: One hundred ninety-six autistic people completed an online survey including measures of ACC, masking, and mental wellbeing. We used moderation analysis to test whether ACC acted as a buffer between masking and wellbeing. RESULTS: Higher self-reported masking related to poorer mental wellbeing. Higher ACC related to more positive wellbeing. Higher ACC correlated with more masking. However, there was no interaction effect, and ACC did not moderate the relationship between masking and wellbeing. CONCLUSIONS: Although ACC did relate to more positive mental wellbeing overall, it did not moderate the negative relationship between masking and wellbeing. If masking relates to the prejudice faced by autistic people, those with greater attachment to the autistic community may also be more aware of discrimination against their community. Furthermore, autistic people who are more connected might experience a higher salience of masking when moving between autistic and nonautistic settings. Tackling prejudice toward autistic people is critical in helping to reduce the negative effects associated with masking, and we must endeavor to change perceptions and increase inclusion of autistic people. WHY IS THIS AN IMPORTANT ISSUE? Lots of autistic people say that they often have to ‘mask’ the fact they are autistic. This means they might (on purpose or by accident) use strategies like planning a social script before meeting someone, trying to hide their stims, or forcing themselves to use eye contact because non-autistic people expect this. Previous research has shown that the more someone masks, the more they experience poor mental health and wellbeing. We wondered whether feeling connected to the autistic community (“autistic community connectedness”) could help protect autistic people from these negative masking outcomes, because many autistic people talk about how they get joy out of being part of this community. WHAT WAS THE PURPOSE OF THIS STUDY? We aimed to see whether autistic community connectedness could play a role in protecting autistic people against the negative effects of masking on mental wellbeing. WHAT DID THE RESEARCHERS DO? We used an online survey which included questions about masking, connectedness to the autistic community, and mental wellbeing. One hundred and ninety-six autistic people completed the survey. We used an analysis called ‘moderation analysis’ which can be used to see if something is acting like a buffer or protector between two things (in this case, masking and wellbeing). WHAT WERE THE RESULTS OF THE STUDY? Although people with higher autistic community connectedness generally had more positive mental wellbeing overall, we found that community connectedness was not acting like a protector. In other words, masking still related to poorer wellbeing, even when someone had high autistic community connectedness. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Our findings show that autistic community connectedness can be something positive for mental wellbeing, but we think that masking keeps happening because there is so much stigma and prejudice towards autistic people. It’s difficult for autistic people to “take the mask off”, and people who are more connected to the autistic community may be even more aware of the prejudice and discrimination experienced by the autistic community. Our findings provide further support for the idea that masking has a lot to do with experiences of stigma. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? Our participants were mostly female, and we recruited them via online communities. There may already be high feelings of autistic community connectedness in these participants, so our findings won’t be the same for everyone, and it would be useful to have more people who actively reject being part of the autistic community within studies like ours, as well as having more diverse participants involved. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We show that autistic community connectedness is related to wellbeing, and we need to support autistic people to feel like they can freely explore this community and decide whether they want to get involved or not. If we want to help autistic people mask less, we really need to work harder on creating societies that are open to authentically autistic people. eng.

Lien vers le texte intégral (Open Access ou abonnement)

6. Capp SJ, Mason D, Colvert E, Agnew-Blais J, Happé F. COVID-19 and Perceived Changes to Quality of Life, Anxiety, Depression, and Loneliness in Autistic and Other Neurodivergent U.K. Adults. Autism in adulthood : challenges and management. 2022; 4(3): 233-46.

BACKGROUND: In the United Kingdom, we have experienced many changes to our daily lives as a result of COVID-19. Autistic and other neurodivergent (ND, e.g., those with attention-deficit hyperactivity disorder) adults may be more vulnerable to negative effects of the pandemic due to pre-existing mental health disparities and unmet support needs. Furthermore, there is little research, either pandemic related or otherwise, which considers how the experiences of autistic adults with additional intersecting ND identities might differ from those without. METHODS: We collected data from an online survey during June 2020 to September 2020 to explore the psychological impact of the coronavirus pandemic on U.K. adults (N = 286, age 18-72 years). Participants included neurotypical (NT) adults (N = 98), autistic adults (N = 73), other ND adults (N = 53), as well as autistic adults with an additional intersecting ND identity (N = 63). We measured and compared levels of quality of life (QoL), depression, anxiety, and loneliness across groups as well as perceived change in these as a result of the pandemic. RESULTS: Autistic adults, with and without additional ND identities, had consistently low QoL and high anxiety, depression, and loneliness compared with NT adults. We found no differences in these areas between autistic adults with and without additional intersecting ND identities. In some areas, non-autistic ND participants were also doing poorly compared with their NT peers. Many participants felt that their QoL, mental health, and loneliness had worsened due to the pandemic, and this was largely similar across groups. CONCLUSIONS: These results highlight that COVID-19 may have led to increased need and demand for mental health services across the U.K. adult population. Both autistic and ND adults may be in particular need of increased (and improved) mental health and well-being support. This is likely because of pre-existing differences in mental health and well-being as well as individuals facing further difficulties as a result of the pandemic. Why is this an important issue? The coronavirus pandemic has been difficult for many people. Some researchers have found that the pandemic may have been especially difficult for autistic adults and those who are neurodivergent in another way. This might be because autistic and neurodivergent people often experience poor mental health and have a variety of unmet needs. What was the purpose of this study? The purpose of this study was to explore quality of life, depression, anxiety, and loneliness in different groups of adults during the pandemic. We also wanted to explore whether people felt that these had become worse during the pandemic. We were interested to explore differences between autistic adults and other groups of neurodivergent adults. This included autistic adults, autistic adults who were neurodivergent in another way, non-autistic neurodivergent adults, and a comparison group of adults who were not autistic or neurodivergent in any way. What did the researchers do? We recruited participants to take part in an online survey during June 2020 to September 2020. We advertised the study using social media and research websites. A total of 286 adults from the United Kingdom completed our survey. What were the results of the study? Autistic adults had consistently low quality of life and high anxiety, depression, and loneliness compared with the comparison group. This was the same regardless of whether the autistic adults were neurodivergent in another way too. In some areas, non-autistic neurodivergent participants had lower quality of life than the comparison group. Their depression and loneliness scores were somewhere in between autistic participants’ and the comparison group’s. Many participants felt that their quality of life, mental health, and loneliness had worsened due to the pandemic. This was similar for participants in all the groups. However, there were also participants who felt much better due to coronavirus restrictions. What do these findings add to what was already known? We now know that autistic adults have experienced poor quality of life, mental health, and loneliness during the pandemic. We also found that there were no differences based on whether autistic adults were also neurodivergent in another way (e.g., an autistic adult with attention-deficit hyperactivity disorder). We also know that non-autistic neurodivergent adults have experienced low quality of life during this time. This is important because there has been very little research on other non-autistic neurodivergent adults’ experiences during COVID-19 restrictions. What are potential weaknesses in the study? Most of our participants were white British and female. This means that our findings may not be relevant to all adults in the United Kingdom. Our study was carried out during the pandemic, which means that we do not know if these differences between the groups will continue to be true in the future. How will these findings help autistic adults now or in the future? We hope that these findings will help to argue for more support to be made available to promote good quality of life and reduce mental health difficulties for autistic, and other neurodivergent, adults. Lots of our participants felt that their quality of life and mental health had got worse due to the pandemic. Because of this, it is now even more important that governments make changes to policy and funding to provide better services and support for autistic and neurodivergent adults. eng.

Lien vers le texte intégral (Open Access ou abonnement)

7. Cheak-Zamora N, Odunleye O. Stress and Coping in Autistic Young Adults. Autism in adulthood : challenges and management. 2022; 4(3): 193-202.

INTRODUCTION: Half a million autistic youth will enter adulthood over the next decade. Support services to help youth successfully transition into adulthood are limited and not tailored to the autistic youth and young adult’s needs. This study utilized qualitative methods to understand how autistic young adults experience and cope with stress during the transition to adulthood. METHODS: The study recruited 15 autistic young adults aged 18-25 years. Each participant completed a short demographic survey and individual interview. Interviews were conducted online via Google Docs or in-person based on the participants’ preference. Three researchers organized and coded the data using a thematic approach. RESULTS: Based on our analysis, three themes emerged. Within the first theme, young adults in this study described experiencing a great deal of stress and provided examples of how it manifested in physical and emotional ways. In the second theme, youth described that the causes of this stress stemmed from general problems handling new or multiple responsibilities and specific problems in school, work, financial responsibilities, and social relationships. Finally, young adults described using various coping mechanisms including relaxation techniques, use of technology, and friends and family social support. CONCLUSIONS: The study findings can help service providers and family members find new ways to help autistic young adults manage their stress. This study provides a unique understanding of stress and coping from the autistic individuals’ point of view. Stress is most often derived from managing new responsibilities in general and school, work, money, and relationships in particular. Tailored support services that follow the individual from adolescence through adulthood are needed to manage these stressors. Researchers and service providers can utilize these recommendations for future program development. Furthermore, the method used in this study can be replicated to facilitate autistic individual input on future program development. WHY IS THIS AN IMPORTANT ISSUE? Few studies have examined what autistic young adults go through as they move from childhood to adulthood. Moving from high school to more adult duties is stressful for all young adults. It is unclear how autistic young adults deal with these changes. WHAT WAS THE PURPOSE OF THIS STUDY? We wanted to better understand the experiences, stressors, supports, and coping styles of autistic young adults as they move from childhood to adulthood. WHAT DID THE RESEARCHERS DO? We asked autistic young adults to describe their experiences, stressors, and how they cope as they age from teen years to adulthood. Fifteen autistic young adults were interviewed through Google Document or in-person interviews. To analyze the data, three researchers read each interview to find ideas and experiences those young adults shared. The researchers met many times to discuss the shared ideas and experiences they found. Researchers discussed these ideas until they agreed on what the main shared ideas (or themes) were. Two researchers then reread all the interviews to match ideas with the interview quote. WHAT WERE THE RESULTS OF THE STUDY? Researchers found three ideas (or themes) that all or most autistic young adults talked about. (1) Young adults said that they felt stress in physical and emotional ways. (2) Dealing with new responsibilities, many responsibilities, and relationship problems were their main causes of stress. (3) Autistic young adults said that they had different ways of dealing with their stress. Some young adults used meditation and others played games on their computers or phones or looked at pictures to deal with stress. Many young adults also said that they get help from family and friends when they are stressed out. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? These findings help us better understand what stressors autistic young adults had and how they deal with this stress. Most studies ask caregivers questions about their young adults. Learning about stressors and ways to deal with stress using the young adult’s own words is an addition to what we previously knew or what was published. Furthermore, the use of Google Doc discussions to collect data is new and was a good method of data collection. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? We only had 15 autistic young adults agree to be in the study, and most were white and male. Young adults with severe communication limits were not able to be in the study. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We know more about the ways autistic young adults feel stress and anxiety and how they deal with it. This information can help service workers give autistic young adults the support they need. The findings from this study can inform new interventions and can help health care workers, support service workers, and family members help autistic young adults deal with their stress and provide more ways to deal with their life stress. eng.

Lien vers le texte intégral (Open Access ou abonnement)

8. Chen Y, Luo J, Chen S, Lin Q, Kuang C, Rao Y, Zhang X, Huang Y, Ma L, Lin J. Altered cortical gyrification, sulcal depth, and fractal dimension in the autism spectrum disorder comorbid attention-deficit/hyperactivity disorder than the autism spectrum disorder. Neuroreport. 2023; 34(2): 93-101.

Autism spectrum disorder (ASD) frequently occurs accompanied by attention-deficit/hyperactivity disorder (ADHD), which catches increasing attention. The comorbid diagnosis of ASD with ADHD (ASD + ADHD) is permitted in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). However, compared to autism spectrum disorder without other symptoms (ASD-only), the special neural underpinnings in ASD+ADHD remain unclear. Therefore, this study aimed to uncover the differences in cortical complexity between ASD + ADHD and ASD-only patients. A total of 114 ASD participants (i.e. containing 40 ASD + ADHD and 74 ASD-only participants) with T1-weighted magnetic resonance images were collected from the Autism Brain Imaging Data Exchange II. Afterward, a surface-based morphometry method was carried out to compare the cortical complexity (i.e. gyrification index, fractal dimension, and sulcal depth) between the ASD + ADHD and ASD-only cohorts. Results showed the increased fractal dimension in the right fusiform gyrus of the ASD + ADHD cohort in comparison to the ASD-only cohort. Moreover, the ASD + ADHD cohort exhibited increased sulcal depth in the left middle temporal gyrus/inferior temporal gyrus and right middle temporal gyrus compared to the ASD-only cohort. Last but not least, the increased gyrification index in the insula/postcentral gyrus was observed in the ASD + ADHD cohort in comparison to the ASD-only cohort. Overall, the present study contributes to the delineation of particular structural abnormalities in ASD + ADHD than ASD-only, enriching the evidence of the combined phenotype of ASD + ADHD.

Lien vers le texte intégral (Open Access ou abonnement)

9. Cope R, Remington A. The Strengths and Abilities of Autistic People in the Workplace. Autism in adulthood : challenges and management. 2022; 4(1): 22-31.

INTRODUCTION: At present, very few autistic people are employed, even though many want to be. It is important that their strengths are identified and valued to help them to find jobs that they enjoy, and that make good use of their skills. The aim of this study was to investigate what strengths autistic people have in the workplace, self-reported by autistic people themselves. METHODS: In this study, autistic participants (n = 66) completed an online questionnaire that asked their views about employment-related strengths that they experienced. We analyzed these data using thematic analysis to identify commonalities across participants’ experiences, and areas where they felt that they could perform better than their nonautistic colleagues. RESULTS: The main strengths identified from these data revealed cognitive advantages such as superior creativity, focus, and memory; increased efficiency and personal qualities such as honesty and dedication; and the ability to offer a unique autism-specific perspective. CONCLUSIONS: Overall, this study suggests that autistic people have many employment-related strengths that should be recognized and valued by autistic people and employers alike. By understanding the strengths that could be associated with autism in the workplace, autistic people may be better able to identify their own strengths in the workplace (with the help of support workers, where necessary). The results should also encourage employers to make an effort to recruit and retain autistic employees, making appropriate adjustments to interview processes and working conditions, and seeking out training when needed. WHY WAS THIS STUDY DONE? At the moment, very few autistic people are employed, even though many want to be. One reason for this might be that nonautistic people focus on things that autistic people find difficult, and ignore things that autistic people can do well. To address this, it is important to make people more aware of strengths that autistic people have, and make sure that they are valued. WHAT WAS THE PURPOSE OF THIS STUDY? We did this study to find out what strengths autistic people have in the workplace, as suggested by autistic people themselves. WHAT DID THE RESEARCHERS DO? In this study, we asked autistic people to fill out an online questionnaire that asked their views about the strengths that they experienced at work. A total of 66 people completed the questionnaire. We read through everyone’s answers, and put them into groups of similar responses. In that way, we could identify the areas where the autistic participants felt that they could perform better than their nonautistic colleagues. WHAT WERE THE RESULTS OF THE STUDY? The participants in our study wrote about many areas of strength and skill at work. The main strengths that they mentioned were advantages related to ways of thinking (like being able to pay attention to tasks well), getting tasks done more efficiently, and personal qualities such as honesty and dedication. They also wrote about how being autistic meant that they could offer a unique view on situations at work. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? This was the first study to look at autistic people’s experiences of skills in the workplace. Other studies have considered skills more generally, rather than focusing on employment—or have used other people’s views about autistic skills, rather than autistic people’s own views. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? To take part in our study, people had to be able to fill out an online questionnaire. This can be difficult for people with intellectual impairment or other language/communication difficulties, which means that some autistic people might have been excluded from our research. More research should be done to understand the skills of people with a wider range of communication differences. Those who took part in our study were also different from the autistic population as a whole—for example, most were female and worked in education. This means that we should not presume that the strengths found in our study are shared by all autistic people. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We think that these results could be important to employers, those working with autistic people, and autistic people themselves. By understanding the strengths that could be associated with being autistic in the workplace, autistic people may be better able to identify their own strengths in the workplace. This may enable them to find a job that they enjoy and excel at. The results should also encourage employers to make an effort to give jobs to autistic people, making changes to interview processes and working conditions, and seeking out training when needed. Overall, this study suggests that autistic people have many employment-related strengths that should be recognized and valued by autistic people and employers alike. eng.

Lien vers le texte intégral (Open Access ou abonnement)

10. de Broize M, Evans K, Whitehouse AJO, Wray J, Eapen V, Urbanowicz A. Exploring the Experience of Seeking an Autism Diagnosis as an Adult. Autism in adulthood : challenges and management. 2022; 4(2): 130-40.

BACKGROUND: Emerging research suggests that seeking an autism diagnosis as an adult is usually difficult and time-consuming but brings relief once a diagnosis is made. This study explored the experience of the pathway to an autism diagnosis during adulthood for adults living in Australia. METHODS: We conducted a qualitative phenomenological study and interviewed 13 adults who identified as autistic about their pathway to autism diagnosis in their mode of choice. Spoken interviews were transcribed verbatim, and transcripts were analyzed by using a thematic approach. RESULTS: Data analysis resulted in 6 themes and 20 meaning units that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two interwoven journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic, whereas the clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports. CONCLUSIONS: Given the potential benefits for adults obtaining a formal autism diagnosis and accessing post-diagnostic supports, it is important that health professionals and governments collaborate to reduce access barriers and ensure adequate services are available. The findings from this study informed the development of Australia’s national guideline for autism diagnosis. WHY IS THIS AN IMPORTANT ISSUE? The experience of being diagnosed as autistic as an adult is not well understood, particularly in Australia. Research from other places, such as New Zealand and the United Kingdom, suggests that receiving an autism diagnosis in adulthood is difficult and time-consuming, but brings relief. We do not know whether this is the same for adults in Australia. WHAT WAS THE PURPOSE OF THIS STUDY? This study aimed at exploring the experience of seeking an autism diagnosis during adulthood in Australia. WHAT DID THE RESEARCHERS DO? We conducted interviews with 13 adults who identified as autistic about their pathway to an autism diagnosis. Three sets of interview questions were used, depending on whether they had already obtained an autism diagnosis, were going through the assessment process, or were self-diagnosed. Adults completed the interview in their mode of choice. Spoken interviews were transcribed word-for-word, and the transcripts were analyzed to identify common themes. WHAT WERE THE RESULTS OF THE STUDY? We identified six themes that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two related journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic. The clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports. Before starting the diagnostic process in adulthood, participants described always feeling different and many missed opportunities to receive an autism diagnosis in their younger years.During the diagnostic process, participants described beginning to consider whether they were autistic and the varied pathways they underwent to confirm this. After the diagnostic process, participants described their experiences of living as autistic and a lack of post-diagnostic supports tailored to their needs. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Our findings were similar to previous research findings from other countries, including the complex journey to diagnosis, relief and understanding on identifying as autistic, and lack of post-diagnostic services. However, to our knowledge, this is the first qualitative study to explore the experiences of adults seeking an autism diagnosis in Australia. Further, we included participants who did not have a formal diagnosis of autism. This group of people is often excluded from autism research, and their experiences of seeking an autism diagnosis are largely unknown. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? The weaknesses of our study included recruiting a relatively small sample of mostly Caucasian females, and we did not consult with our study participants or other autistic adults to see whether our final themes aligned well with their experience. However, no new findings emerged in later interviews and our findings were similar to international literature. Future research should recruit more diverse groups of autistic adults and involve greater levels of autistic input. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? Our findings informed the development of the “National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia,” a first step toward improving autism diagnosis in Australia. eng.

Lien vers le texte intégral (Open Access ou abonnement)

11. Echeveste R, Ferrante E, Milone DH, Samengo I. Bridging physiological and perceptual views of autism by means of sampling-based Bayesian inference. Network neuroscience (Cambridge, Mass). 2022; 6(1): 196-212.

Theories for autism spectrum disorder (ASD) have been formulated at different levels, ranging from physiological observations to perceptual and behavioral descriptions. Understanding the physiological underpinnings of perceptual traits in ASD remains a significant challenge in the field. Here we show how a recurrent neural circuit model that was optimized to perform sampling-based inference and displays characteristic features of cortical dynamics can help bridge this gap. The model was able to establish a mechanistic link between two descriptive levels for ASD: a physiological level, in terms of inhibitory dysfunction, neural variability, and oscillations, and a perceptual level, in terms of hypopriors in Bayesian computations. We took two parallel paths-inducing hypopriors in the probabilistic model, and an inhibitory dysfunction in the network model-which lead to consistent results in terms of the represented posteriors, providing support for the view that both descriptions might constitute two sides of the same coin.

Lien vers le texte intégral (Open Access ou abonnement)

12. Harmens M, Sedgewick F, Hobson H. The Quest for Acceptance: A Blog-Based Study of Autistic Women’s Experiences and Well-Being During Autism Identification and Diagnosis. Autism in adulthood : challenges and management. 2022; 4(1): 42-51.

BACKGROUND: Although studies have found that autism is underdiagnosed in women and that autistic women have poorer well-being outcomes than men, less is known about autistic women’s experiences with self-identification or diagnosis or how they feel such experiences affect their mental health. METHODS: We explored autistic women’s experiences of coming to recognize and understand themselves as autistic. We used data collected from blogs written by autistic women about their diagnostic or self-identification experiences. We were particularly interested in well-being, and how this contributed to, was affected by, and interacted with the identification and diagnostic process. We used thematic analysis to explore and document experiences described in blogs from 20 blogsites (representing the views of 23 autistic women). RESULTS: Acceptance was a central issue. We developed themes of self-understanding and self-acceptance, being understood and accepted by others (including peers, clinicians, and others in the autism community), and the exhaustion resulting from trying to be accepted and be understood. These issues arose both when going through the diagnostic process, and after receiving a formal diagnosis. CONCLUSIONS: Diagnosis and identification may have both positive and negative effects on autistic women’s well-being, with women often describing difficulties after diagnosis as stemming from facing male stereotypes of autism. We consider the implications of our findings for clinicians, researchers, and those who work with autistic women. WHY WAS THIS STUDY DONE? Research shows that autistic women are under-recognized and underdiagnosed. This can lead to a lack of support. Other research indicates worse mental health outcomes in autism. Exploring the perspectives of autistic women could help us understand how diagnosis may relate to mental well-being. WHAT WAS THE PURPOSE OF THIS STUDY? This study examined the experiences of autistic women. We focused on well-being, mental health, and the role of diagnosis. We wanted to gain insight into how to support autistic women to achieve positive well-being. WHAT DID THE RESEARCHERS DO? The researchers read blogs from 20 blogsites, reflecting the views and experiences of 23 autistic women. Women were either self-identifying or clinically diagnosed. The researchers then used a qualitative research technique called “thematic analysis” to summarize what women often said about well-being and diagnosis. WHAT WERE THE RESULTS OF THE STUDY? Acceptance and feelings of belonging were important. We developed three themes: (1) self-understanding and self-acceptance, (2) being understood and accepted by others, and (3) exhaustion. Study participants felt that diagnosis often helped them understand their needs and be kinder to themselves. Diagnosis also helped women make sense of what had happened to them in the past. Finally, it helped them connect with a community, and improved relationships. However, stereotypes of autism affected women’s own acceptance of their diagnosis. In some cases, feelings that they did not fit an autism diagnosis led to imposter syndrome. They described the struggle for acceptance, before and after their autism diagnosis, as exhausting. They felt this exhaustion came from trying to hide their difficulties or having to explain why they did not fit stereotypes. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? These findings support research that has identified high levels of exhaustion in autistic women due to trying to hide their difficulties and conform to societal expectations. Our findings suggest that acceptance is important for autistic women’s well-being after their diagnosis. Facing a lack of acceptance from others could impact on women’s self-acceptance. This could disrupt the positive effects a diagnosis has for women’s well-being. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? In their blogs, women were remembering their experiences. Therefore, time may have impacted these women’s views, and changed what is important to them. Our sample was limited as it did not include women who publicly identified as having intellectual disabilities, it only contained adult women (mainly aged 20–50 years), and it did not include nonbinary individuals. Experiences of autistic women who write blogs may be different from those of other autistic women. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We suggest that when women seek diagnosis, acknowledgment of the difficulties they have faced coping without the recognition of being autistic is crucial. Clinicians should be aware that women may mask their difficulties, and they should avoid minimizing underlying problems. This study suggests that challenging the stereotypes associated with autism and educating professionals about autism in women are highly important. Women may benefit from support after diagnosis that helps them to manage experiences of being told they do not appear autistic, or do not fit people’s expectations of autism. eng.

Lien vers le texte intégral (Open Access ou abonnement)

13. Hume R. Show Me the Real You: Enhanced Expression of Rogerian Conditions in Therapeutic Relationship Building with Autistic Adults. Autism in adulthood : challenges and management. 2022; 4(2): 151-63.

BACKGROUND: Research in psychotherapy and counseling theory has shown the importance of a strong therapeutic relationship. However, in the context of working with autistic adults, the relationship appears to be de-emphasized, or « different approaches » are recommended without specifying these. Neglect of relationship building may contribute to autistic adults’ negative experiences with health care professionals identified in previous studies. METHODS: I interviewed 17 autistic adults about their relationship building experiences with a wide range of professionals primarily from mental and medical health backgrounds. I also interviewed two mental health counselors and one psychologist who had experience working with this client group and had been recommended by autistic participants. I elicited best practice recommendations from all participants. I analyzed the data in an interpretive-interactionist framework and present them through creative analytic practice. FINDINGS: I address one major theme in this article: the importance of Rogerian/person-centered relationship conditions. All had to be practiced in an enhanced way: (1) Enhanced congruence could be demonstrated through therapist self-disclosure and refraining from phony relationship building « techniques » such as vocal adjustments. (2) Enhanced empathy could be demonstrated through genuine listening and accurate interpretation; however, interpretation needed to be phrased tentatively. (3) Enhanced unconditional positive regard could be demonstrated through explicit verbal expression, practical demonstration, and remembering. CONCLUSIONS: Results largely mirrored research with non-autistic populations: different approaches were not needed for relationship building. Participants emphasized the importance of Rogers’ person-centered conditions and described pivotal relationship building moments associated with enhanced expression of these conditions. WHY WAS THIS STUDY DONE? Previous studies have reported that autistic adults often do not experience good relationships with their mental and medical health care professionals, feeling misunderstood or patronized. This is a problem, as strong relationships are essential for good outcomes in many settings. Limited resources exist for professionals to improve their relationship building skills with this client group. The few texts that address this question at all do so only briefly. They either recommend different approaches (but do not specify these) or suggest that relationship building is too hard to be worth the effort with autistic adults. No research has yet engaged autistic adults to ask their recommendations for best practice in this area. WHAT WAS THE PURPOSE OF THIS STUDY? This study sought answers to three main questions: 1.What makes a good working relationship from the point of view of autistic adults?2.How do successful professionals establish relationships with their autistic clients?3.What do autistic adults want professionals to do to improve relationships? WHAT DID THE RESEARCHER DO? The researcher asked 17 autistic adults and 3 non-autistic mental health professionals with expertise in autism about their experiences and recommendations for improving relationship building. WHAT DID THE RESEARCHER FIND? Several aspects were important, but this article discusses only one aspect due to a lack of space: using the same relationship building approaches as with non-autistic clients, but in an enhanced way.1.Professionals had to be authentic in all their interactions with autistic clients. If they were “fake,” many participants became confused, as they could tell something was wrong. They could only trust professionals who genuinely cared about them.2.Professionals had to show empathy by listening to their clients without trying to advise or “fix” the person. Participants also appreciated if professionals showed understanding of their experience by interpreting it correctly.3.Participants needed to feel liked by their professionals. Professionals could show this liking best by:expressing it verbally,demonstrating it in a practical way (such as offering a cup of tea, putting clients in touch with support networks in the community, or finding extra resources for them), orremembering client details (such as access needs or interests). HOW WILL KNOWING THIS HELP AUTISTIC ADULTS? Many of those in the health care workforce want to learn how to engage better with their autistic adult clients. This study aims to lay the groundwork for a future resource for professional development. If professionals are empowered to build better, more trusting relationships with their autistic adult clients, health care outcomes may be improved. WHAT ARE THE WEAKNESSES OF THIS STUDY? This study had a relatively small number of participants. Therefore, the experiences they discussed may not reflect the experiences of the larger autistic community. Professionals should adjust their relationship building approach to each client’s preferences. eng.

Lien vers le texte intégral (Open Access ou abonnement)

14. Jones SC. Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools. Autism in adulthood : challenges and management. 2022; 4(2): 104-9.

Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research-as participants, advisors, and (co)researchers-has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically « valid » and « reliable » rather than relevant. As long as this is the case, we will continue to see studies published that « explain autism » in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift. “WHY IS THIS TOPIC IMPORTANT?”: Research into the experiences of autistic people is used to inform policy, practice, and community understanding. It is important that autism research respects and reflects autistic voices. Current research often uses scientific instruments that are not consistent with our lived experience of autism. “WHAT IS THE PURPOSE OF THIS ARTICLE?”: This article explains why the current approach to research—encouraging the use of existing measures and incremental change—is harmful to autism research and to autistic people. It provides examples of commonly used tools and explains why they are problematic. The article aims at encouraging a discussion into why the findings of autism research are often inconsistent with the experiences of autistic people. “WHAT PERSONAL OR PROFESSIONAL PERSPECTIVES DO THE AUTHORS BRING TO THIS TOPIC?”: I am an autistic adult, the mother of two autistic adults and an autism advocate. I am also an autism researcher with a background in public health and communication. “WHAT IS ALREADY KNOWN ABOUT THIS TOPIC?”: Academic journals aim at publishing papers that present the best and most accurate research projects. Researchers are encouraged to use tools that have been developed and tested in previous studies, because these are considered to be “reliable” (consistent) and “valid” (accurate). Researchers are discouraged from developing new measures or making major changes to existing ones. So, it can be hard to publish community-driven research that uses tools developed by autistic people. “WHAT DO THE AUTHORS RECOMMEND?”: I recommend that autism researchers ensure that the tools they use to study autism actually measure the experiences of autistic people. I also recommend that we stop relying on existing measures that do not make sense to autistic people and work with autistic people to develop better tools. “HOW WILL THESE RECOMMENDATIONS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE?”: These recommendations will help autistic adults by making autism research more relevant and useful. Research that reflects our actual experiences will improve community understanding of autism. It will also lead to better policies and practices that meet the needs and aspirations of autistic people. eng.

Lien vers le texte intégral (Open Access ou abonnement)

15. LaMarca K, Gevirtz R, Lincoln AJ, Pineda JA. Brain-Computer Interface Training of mu EEG Rhythms in Intellectually Impaired Children with Autism: A Feasibility Case Series. Applied psychophysiology and biofeedback. 2023.

Prior studies show that neurofeedback training (NFT) of mu rhythms improves behavior and EEG mu rhythm suppression during action observation in children with autism spectrum disorder (ASD). However, intellectually impaired persons were excluded because of their behavioral challenges. We aimed to determine if intellectually impaired children with ASD, who were behaviorally prepared to take part in a mu-NFT study using conditioned auditory reinforcers, would show improvements in symptoms and mu suppression following mu-NFT. Seven children with ASD (ages 6-8; mean IQ 70.6 ± 7.5) successfully took part in mu-NFT. Four cases demonstrated positive learning trends (hit rates) during mu-NFT (learners), and three cases did not (non-learners). Artifact-creating behaviors were present during tests of mu suppression for all cases, but were more frequent in non-learners. Following NFT, learners showed behavioral improvements and were more likely to show evidence of a short-term increase in mu suppression relative to non-learners who showed little to no EEG or behavior improvements. Results support mu-NFT’s application in some children who otherwise may not have been able to take part without enhanced behavioral preparations. Children who have more limitations in demonstrating learning during NFT, or in providing data with relatively low artifact during task-dependent EEG tests, may have less chance of benefiting from mu-NFT. Improving the identification of ideal mu-NFT candidates, mu-NFT learning rates, source analyses, EEG outcome task performance, population-specific artifact-rejection methods, and the theoretical bases of NFT protocols, could aid future BCI-based, neurorehabilitation efforts.

Lien vers le texte intégral (Open Access ou abonnement)

16. Long D, Yang T, Chen J, Dai Y, Chen L, Jia F, Wu L, Hao Y, Li L, Zhang J, Ke X, Yi M, Hong Q, Chen J, Fang S, Wang Y, Wang Q, Jin C, Li T. Age of Diagnosis and Demographic Factors Associated with Autism Spectrum Disorders in Chinese Children: A Multi-Center Survey. Neuropsychiatric disease and treatment. 2022; 18: 3055-65.

PURPOSE: The present study investigated the age of diagnosis, treatment and demographic factors of Chinese children with autism spectrum disorders (ASD), to provide a scientific basis for the early detection, diagnosis, and intervention of ASD. PATIENTS AND METHODS: A total of 1500 ASD children aged 2-7 years old from 13 cities in China were administered questionnaires to examine their diagnosis, treatment, and basic family information. The Childhood Autism Rating Scale (CARS) was used to measure the symptoms and severity of ASD children, and the Children Neuropsychological and Behavior Scale-Revision 2016 (CNBS-R2016) was utilized to measure neurodevelopmental levels of ASD children. RESULTS: We found that for children with ASD, the median (p25, p75) age for the initial detection of social behavioral developmental delay was 24 (18, 30) months, while the age for the initial diagnosis was 29 (24, 36) months and the age for the beginning of intervention was 33 (27, 42) months. Multiple linear regression (MLR) analysis suggested that in children with ASD whose parents were divorced, separated, or widowed, or whose mothers were engaged in physical work, the initial detection of social behavioral developmental delay happened later. For the children with ASD who lived in urban areas, had higher levels of ASD symptom severity or whose parents were not divorced or separated, the age for the initial diagnosis was earlier. For the children with ASD who lived in urban areas or whose mothers had received higher level of education, the earlier age for the beginning of intervention was observed, while for those with ASD whose mothers were engaged in physical work, the age for the beginning of training was later. CONCLUSION: It is recommended to actively carry out health education of ASD and strengthen the support for ASD families to enhance their rehabilitation level.

Lien vers le texte intégral (Open Access ou abonnement)

17. Mantzalas J, Richdale AL, Adikari A, Lowe J, Dissanayake C. What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms. Autism in adulthood : challenges and management. 2022; 4(1): 52-65.

BACKGROUND: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. METHODS: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive « bottom-up » approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. RESULTS: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) « You need enough balloons to manage the weight of the rocks. » (7) Masking: Damned if you do, damned if you don’t. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. CONCLUSIONS: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people’s functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery. WHAT WAS THE PURPOSE OF THIS STUDY? Although the autistic community has talked about autistic burnout for a long time, there has not been much research about the topic. This study aimed to investigate autistic burnout from the perspective of autistic adults to understand what they think causes it, the symptoms and impact on their lives, and what can be done to assist prevention and recovery. WHY IS THIS AN IMPORTANT ISSUE? This issue is important because autistic people have said that autistic burnout can severely affect their quality of life and well-being and contribute to poor mental health, including the risk of suicide. WHAT DID THE RESEARCHERS DO? We used a computer program to collect public posts from two online platforms to look at how autistic adults described autistic burnout. We collected 1127 posts shared over a 12-year period by 683 users. To understand the adults’ lived experiences, we analyzed their language at the surface level and looked for common themes across the data. WHAT WERE THE RESULTS OF THE STUDY? The adults in this study said that autistic burnout was often first experienced during adolescence, lasted months or years, and was hard to recover from. They described severe direct and indirect consequences for their physical and mental health, capacity to function, and ability to achieve personal goals. They described a general lack of knowledge about autism, especially among health care professionals, which led to misdiagnosis and inadequate or inappropriate treatment. Masking or “camouflaging” to pass as nonautistic was the most common reason participants gave for autistic burnout. Many used strategies to manage energy levels to avoid burnout. The autistic community was an essential source of information and support for participants. Overall, stigma, discrimination, and low awareness and acceptance of autism were responsible for the cycle of autistic burnout. HOW DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? As one of the first studies about autistic burnout, we learned that it happens because of factors associated with being autistic and poor autism awareness and acceptance within society. We now know that autistic people often first experience autistic burnout when they are young, but it usually recurs, which can stop autistic people leading fulfilling lives. We learned that difficulty identifying emotions may be a risk factor and that online communication may help autistic people during recovery. We found that some positive consequences of autistic burnout include autism diagnosis in adulthood, finding the autistic community, and making empowering lifestyle changes. WHAT ARE THE POTENTIAL WEAKNESSES IN THE STUDY? We had limited demographic information, so we do not know how diverse the sample was or how factors such as gender, age, race, or identifying as LGBTQI may have influenced some people’s experience of autistic burnout. The adults in this study had access to online platforms and could communicate in writing, and so, people with higher communication support needs may not have been included. HOW WILL THESE RECOMMENDATIONS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? The findings reinforce the personal stories of autistic people and show that autistic burnout is a common, consistent, and harmful experience. The findings show it is vital for health professionals to recognize autistic burnout to provide appropriate care and support because prevention and early detection could help stop the harmful cycle of autistic burnout. The findings underscore the importance of reducing discrimination and stigma against autistic people and increased acceptance. eng.

Lien vers le texte intégral (Open Access ou abonnement)

18. Mason D, Stewart GR, Capp SJ, Happé F. Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go. Autism in adulthood : challenges and management. 2022; 4(2): 164-72.

BACKGROUND: There is a paucity of research involving older autistic people, as highlighted in a number of systematic reviews. However, it is less clear whether this is changing, and what the trends might be in research on autism in later life. METHODS: We conducted a broad review of the literature by examining the number of results from a search in three databases (PubMed, Embase, PsycINFO) across four age groups: childhood, adolescence, adulthood, and older age. We also examined the abstracts of all the included articles for the older age group and categorized them under broad themes. RESULTS: Our database search identified 145 unique articles on autism in older age, with an additional 67 found by the authors (hence, the total number of articles in this review is 212). Since 2012, we found a 392% increase in research with older autistic people, versus 196% increase for childhood/early life, 253% for adolescence, and 264% for adult research. We identify 2012 as a point at which, year-on-year, older age autism research started increasing, with the most commonly researched areas being cognition, the brain, and genetics. However, older adult research only accounted for 0.4% of published autism studies over the past decade. CONCLUSIONS: This increase reflects a positive change in the research landscape, although research with children continues to dominate. We also note the difficulty of identifying papers relevant to older age autism research, and propose that a new keyword could be created to increase the visibility and accessibility of research in this steadily growing area. WHY IS THIS TOPIC IMPORTANT? Autistic children grow into autistic adults, and autistic adults grow old. However, there is very little research about older autistic people. This is important so we know how to support older autistic people. WHAT IS THE PURPOSE OF THIS ARTICLE? We wanted to examine how autism research activity has changed over time with respect to four life stages: infancy, childhood and adolescence, adulthood, and older age. We then more closely looked at older age autism research to point out important gaps where more research is needed. WHAT DID THE AUTHORS DO? We conducted a broad review of the literature on autism and described what life stages are studied in published research. We looked at how the amount of research on different life stages has changed over time. We further examined studies focused on older age and summarized the topics covered. WHAT DID YOU FIND ABOUT THIS TOPIC? Our review estimates that only 0.4% of autism-related publications over the past decade are about older autistic people. We identify 2012 as a turning point since when the number of studies has markedly increased year-on-year. Encouragingly, the percentage increase in autism research over the past decade is greater for older age research (392% rise) than childhood/early life (196%), adolescence (253%), or adulthood research (264%). WHAT DO THE AUTHORS RECOMMEND? We suggest that there are many research areas that need addressing. Specifically, more research is needed on social isolation and the practicalities of living arrangements for older autistic people, as well as more studies including older autistic adults with intellectual disability. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We do not think that our findings will immediately benefit the lives of autistic people. However, we do hope to draw attention to topics where research is needed to improve the lives of autistic older people. We also suggest that a new keyword could be created that researchers could then include in their articles to help autistic people and those interested in autism and aging find relevant writings. eng.

Lien vers le texte intégral (Open Access ou abonnement)

19. Moravej H, Inaloo S, Nahid S, Mazloumi S, Nemati H, Moosavian T, Nasiri J, Ghasemi F, Alaei MR, Dalili S, Aminzadeh M, Katibeh P, Amirhakimi A, Yazdani N, Ilkhanipoor H, Afshar Z, Hadipour F, Hadipour Z. Inborn Errors of Metabolism Associated With Autism Among Children: A Multicenter Study from Iran. Indian pediatrics. 2023.

OBJECTIVES: This study aimed to find the common inborn errors of metabolism in Iranian patients with autism spectrum disorder. METHODS: In this cross-sectional multicenter study, 105 children and adolescents with autism spectrum disorder from six centers in different cities of Iran were enrolled between August, 2019 and October, 2020. Metabolic screening, including measuring plasma levels of amino acids, acylcarnitines, creatine, and guanidinoacetate, and urinary levels of organic acids, purines, and pyrimidines was performed. Other data, including age, parental consanguinity, history of seizure, developmental mile-stones, and physical examination, were also recorded. RESULTS: An inborn error of metabolism was found in 13 (12.4%) patients. Five patients (4.8%) had cerebral creatine deficiency syndrome, four (3.8%) had arginine succinate aciduria, 2 methylbutyryl glycinuria, short-chain acyl-CoA dehydrogenase deficiency, and combined methylmalonic aciduria/malonic aciduria. There was a strong association between positive metabolic evaluation and parental consanguinity, history of seizures, microcephaly, and delayed development. CONCLUSIONS: Our results suggest that metabolic screening should be performed in the cases of autism associated with parental consanguinity, developmental delay, and a history of seizures. The assays to be considered as a screening panel include plasma or blood amino acids, acylcarnitines, creatine and guanidinoacetate, and urinary levels of organic acids.

Lien vers le texte intégral (Open Access ou abonnement)

20. Pearson A, Rees J, Forster S. « This Was Just How This Friendship Worked »: Experiences of Interpersonal Victimization Among Autistic Adults. Autism in adulthood : challenges and management. 2022; 4(2): 141-50.

BACKGROUND: The victimization of autistic people by familiar others (interpersonal victimization) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them. The aim of the current study was to explore experiences of interpersonal victimization among autistic adults from their own perspective. METHODS: We recruited 43 autistic adults to take part in a qualitative online study, and asked about their experiences of being victimized or taken advantage of by people they know in the past. We analyzed their comments at the semantic level using inductive thematic analysis, from a critical realist perspective. RESULTS: We identified two key themes in the data. The first theme, « cycles of victimization » highlighted the occurrence of polyvictimization in the sample. The second (« perceptions of victimization ») focused on how these experiences were related to difficulties with trust (of both self and others), the recognition of victimization, and heightened compliance. The participants expressed difficulty with saying no to people, and found it difficult to identify when someone had negative or manipulative intentions. CONCLUSIONS: Our findings suggest that autistic adults experience victimization from a range of close others, and may find it difficult to recognize when someone is acting in an abusive manner. Many participants had experienced heightened compliance in response to unreasonable requests from others, however, reasons for this were varied (e.g., fear and desire to avoid confrontation) and require further investigation. These findings have implications for developing supports that enable autistic adults to recognize their own boundaries and advocate for themselves, in addition to helping them to recognize what a healthy relationship looks like. WHY WAS THIS STUDY DONE? We think that many autistic people experience being hurt by people they know. This can include both physical harm such as hitting, and emotional harm such as being called horrible things. We currently know very little about these experiences, even though we think it happens a lot. WHAT WAS THE PURPOSE OF THIS STUDY? The purpose of this study was to find out more about the experiences of autistic people who have been hurt by someone they know, from their own point of view. WHAT DID THE RESEARCHERS DO? Using an online survey, we invited autistic adults who had been hurt by someone they know to write about what had happened to them from their own point of view. Forty-three autistic people wrote about their experiences and we analyzed these data by reading what they had said and looking for patterns (themes) across people. WHAT WERE THE RESULTS OF THIS STUDY? Many of the participants told us that they had been hurt more than once, by different people (e.g., their parents, and people they thought were friends). Some participants said that they found it difficult to tell whether someone is treating them badly, and to trust their own judgment about other people’s behavior. Some people said that they felt like they had do what other people told them to do. Some did this to avoid getting other people into trouble, whereas others did it because they were scared of what would happen if they said no. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Previous studies have shown that lots of autistic people have been hurt by people they know, and that this has a negative impact on their mental health. Researchers have also asked autistic people what might put them at risk of being hurt by people they know, and how to prevent it. To our knowledge, this is the first study to directly ask autistic people about their own experiences of being hurt by people they know, and highlights what they feel is important for us to know about it. WHAT ARE POTENTIAL WEAKNESSES IN THIS STUDY? We do not know very much about the people who took part aside from their age and gender (e.g., what their race or ethnicity is), and we do not know much about the people who victimized them (e.g., whether they were neurotypical or autistic themselves), or exactly when it happened. HOW WILL THESE FINDINGS HELP AUTISTIC PEOPLE NOW OR IN THE FUTURE? The findings from this study could be used to think about how we can support autistic people in saying no if someone tells them to do something they do not want to do. They can also be used to find ways to help people to recognize when other people are being hurtful. Finally, we hope that reading this study will make other researchers and practitioners interested in learning how to support autistic people who have been hurt by people they know. eng.

Lien vers le texte intégral (Open Access ou abonnement)

21. Pellicano E, Lawson W, Hall G, Mahony J, Lilley R, Heyworth M, Clapham H, Yudell M. « I Knew She’d Get It, and Get Me »: Participants’ Perspectives of a Participatory Autism Research Project. Autism in adulthood : challenges and management. 2022; 4(2): 120-9.

INTRODUCTION: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. METHODS: We spoke to 25 Australian late-diagnosed autistic adults (aged 45-72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants’ interviews. RESULTS: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as « exhausting » and « draining, » participants also reported feeling « supported all the way » and agreed « it was made easier because I had an autistic researcher interviewing me. » One participant went so far as to say that they « probably would have dropped out [of the project] if it was run by people who weren’t autistic. » CONCLUSIONS: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research. WHY IS THIS AN IMPORTANT ISSUE? Autistic people are often left out of decisions that affect them, including in research. We wanted to change that. We, a group of autistic and nonautistic researchers, worked together to come up with a research project. In that project, we wanted to know more about autistic people who were diagnosed late in their lives. WHAT WAS THE PURPOSE OF THIS STUDY? We wanted to know about their experiences of taking part in the research. We also wanted to understand what it was like for our study participants to tell their life story to another autistic person. WHAT DID WE DO? We spoke to 25 autistic people about their experiences of telling their life history. We asked questions like, “Can you tell me a bit about why you wanted to share your life history?” and “What was your overall experience of taking part in this research project?” We interviewed participants for about 25 minutes. WHAT WERE THE RESULTS OF THE STUDY? We found that participants felt good about taking part in this project. They felt supported and were pleased that the project was being run by autistic people. They also told us that telling their story was often painful. However, it was made easier because they had an autistic researcher interviewing them. They also felt that they could share more with this person than with someone who was not an autistic person. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? This study shows that research that is done together by autistic and nonautistic researchers has a positive effect on participants. WHAT ARE THE POTENTIAL WEAKNESSES IN THE STUDY? Most of our participants were well educated, White, and were in some form of work. We do not know if participants’ positive experiences would also happen with other autistic people, including those from different cultural groups. This study was also unusual because it allowed participants to tell their own stories in their own way. That might have made participants more positive about it. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? These findings show how important it is to include autistic people in research. It makes a real difference to the participants and to the quality of the research. eng.

Lien vers le texte intégral (Open Access ou abonnement)

22. Scheerer NE, Boucher TQ, Sasson NJ, Iarocci G. Effects of an Educational Presentation About Autism on High School Students’ Perceptions of Autistic Adults. Autism in adulthood : challenges and management. 2022; 4(3): 203-13.

BACKGROUND: Social communication difficulties are a clinical characteristic of autism, but social interactions are reciprocal in nature and autistic individuals’ social abilities may not be the only factor influencing their social success. Nonautistic individuals’ social perceptions and behavior also contribute to autistic individuals’ social difficulties. Previous research has identified that nonautistic individuals’ perception of autistic individuals is influenced by autism knowledge and the quantity and quality of exposure to autistic people. The current research aimed to examine how autistic adults are perceived by high school students, assess whether quality and quantity of autism contact predicts these perceptions, and explore whether these perceptions are malleable. METHODS: One hundred fifty-one senior high school students (15-19 years old) completed the First Impression Scale after viewing video recordings of 20 autistic and 20 nonautistic adults in social situations, either before or after viewing a 50-minute educational presentation detailing the everyday experiences of autistic people and participating in a question-and-answer session. We assessed students’ prior experiences with autistic people using the Quantity and Quality of Contact Scale and their own self-perceived social competence using the Multidimensional Social Competence Scale. RESULTS: Consistent with previous studies, students rated autistic adults less favorably than nonautistic adults. However, the educational presentation produced modest but significant improvements on these ratings, with students who viewed the presentation rating autistic adults as more attractive and likable and reporting greater social interest in them compared to those who had not yet viewed the presentation. Furthermore, consistent with a double empathy framework, exploratory analyses indicated that self-reports of greater social competence among students was associated with greater bias against autistic adults, whereas reports of higher quality interactions with autistic people were associated with less bias. CONCLUSION: Previous research has demonstrated that nonautistic adults evaluate autistic people less favorably and report lower social interest in them relative to nonautistic controls. In this study, we extend these findings to adolescents but find these biases are somewhat malleable, with education about autism exerting some modest benefits. Changing nonautistic attitudes about autistic differences may provide an avenue for improving interactions for autistic individuals without putting the onus on autistic individuals to change or mask their behavior and identity. WHY IS THIS AN IMPORTANT ISSUE? Nonautistic people often have negative views or biases about autistic differences. These biases contribute to the “Double Empathy Problem,” where the attitudes, misunderstandings, and behaviors of nonautistic people can add to the social challenges faced by autistic people. However, we do not know how and why these negative biases develop, and more research is needed to understand when they appear, what factors contribute to them, and whether they can be changed. WHAT WAS THE PURPOSE OF THIS STUDY? We wanted to look at whether nonautistic teenagers at high school share the same biases toward autistic people that have previously been shown in adults. We then wanted to see if we could improve nonautistic teenagers’ views of autistic people by teaching them about what being autistic means. We were also curious whether high school students who have spent more time with autistic people would view autistic people more positively. Finally, we were interested in whether nonautistic people’s views of autistic people depend on how they viewed their own social skills. WHAT DID THE RESEARCHERS DO? High school students (15–19 years old) viewed an educational presentation describing the everyday experiences of autistic people and took part in a question-and-answer session about autism. They also made judgments about 20 autistic and 20 nonautistic adults in videos, such as whether they thought the person in the video was likable or awkward, and if they would hang out with them or not. Half of the students made these judgments before viewing the presentation and the other half did this after viewing the presentation. This allowed us to see whether the educational presentation could change high school students’ attitudes about autistic people. The high school students also filled out questionnaires about their experiences with autistic people and their own social skills, so we could assess whether these things were associated with attitudes about autistic people. WHAT WERE THE RESULTS OF THIS STUDY? Students viewing the educational presentation first rated autistic adults as more attractive, likable, and said they would be more interested in hanging out with them compared with the students who had not yet viewed the presentation. Students who reported higher quality experiences with autistic people in the past judged autistic people in the videos more positively, but those who thought they personally had strong social skills judged the autistic adults more negatively. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? We previously knew that nonautistic adults have negative attitudes toward autistic people. In this study, we show that nonautistic high school students also show negative attitudes toward autistic people. More importantly, we also find that these views can be improved somewhat by a presentation about autism. We also show that nonautistic adolescents who say they are the most socially skilled rate autistic people the most negatively. This may be because they are the most likely to value “typical” or “normative” social skills and be more judgmental about those who socialize in a different way. WHAT ARE THE POTENTIAL WEAKNESSES IN THE STUDY? Students only rated autistic people from videos. We are not sure if the results would have been the same if the students were judging autistic people in real life or directly interacting with them. We also do not know if the judgments would be different if we had used different autistic adults or a more diverse sample. For instance, none of the autistic adults in the videos had an intellectual disability. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? These findings suggest that educating about autistic lives and high-quality contact with autistic people may be tools for improving the attitudes of nonautistic adolescents. This stage in life may be particularly important for improving the acceptance and inclusion of autistic people, as late adolescence is when many autistic people are beginning the transition to adulthood and their well-being may be increasingly affected by their experiences with nonautistic people. eng.

Lien vers le texte intégral (Open Access ou abonnement)

23. Sumie M, Yamaura K, Aoyama K. Association of labor neuraxial analgesia with autism spectrum disorders in offspring. Journal of anesthesia. 2023.

Lien vers le texte intégral (Open Access ou abonnement)

24. Tanaka M, Yamada E, Yamasaki T, Fujita T, Nakaniwa Y, Ogata K, Nakazono H, Maekawa T, Tobimatsu S. Asynchronous neural oscillations associated with subliminal affective face priming in autism spectrum disorder. Neuroreport. 2023.

Autism spectrum disorder (ASD) is characterized by social communicative disturbance. Social communication requires rapid processing and accurate cognition regarding others’ emotional expressions. Previous electrophysiological studies have attempted to elucidate the processes underlying atypical face-specific N170 responses to emotional faces in ASD. The present study explored subliminal affective priming effects (SAPEs) on the N170 response and time-frequency analysis of intertrial phase coherence (ITPC) for the N170 in ASD. Fifteen participants [seven participants with ASD and eight typically developing (TD) controls] were recruited for the experiment. Event-related potentials were recorded with a 128-channel electroencephalography device while participants performed an emotional face judgment task. The results revealed enhanced N170 amplitude for supraliminal target-face stimuli when they were preceded by subliminal fearful-face stimuli, in both the ASD and TD groups. Interestingly, TD participants exhibited higher alpha-ITPC in the subliminal fearful-face priming condition in the right face-specific area in the N170 time window. In contrast, there were no significant differences in ITPC in any frequency bands between the subliminal fearful and neutral priming conditions in the ASD group. Asynchronous phase-locking neural activities in the face-specific area may underlie impaired nonconscious face processing in ASD, despite the presence of common features of SAPEs for the N170 component in both the ASD and TD groups.

Lien vers le texte intégral (Open Access ou abonnement)

25. Turnock A, Langley K, Jones CRG. Understanding Stigma in Autism: A Narrative Review and Theoretical Model. Autism in adulthood : challenges and management. 2022; 4(1): 76-91.

The experience of stigma by autistic people is relatively understudied, despite contributing to a range of poor outcomes and having an overarching impact on well-being. The current review of the literature synthesizes research to determine what is currently known and presents a theoretical model of autism stigma. Autism stigma is primarily influenced by a public and professional understanding of autism in combination with interpretation of visible autistic traits. Moderating factors include the quality and quantity of contact with autistic people, cultural factors, sex and gender, individual differences, and diagnostic disclosure. Stigma can reduce well-being as well as increase the presence of camouflaging behaviors, which mask autistic traits. Caregivers of autistic people can experience stigma by association, that is, affiliate stigma, which can impact their own well-being. A variety of interventions and approaches to reduce stigma are discussed, including « autism friendly » spaces, positive media representation, educational and psychosocial training for the public and professionals, as well as cultural and systemic shifts that foster inclusivity and recognize neurodiversity. WHY IS THIS TOPIC IMPORTANT? Autistic people are known to experience stigma. This means that they can face ignorance, prejudice, and discrimination. WHAT WAS THE PURPOSE OF THIS ARTICLE? The purpose of the article was to review research on autism stigma. We wanted to better understand autism stigma. We looked at why autistic people and their families experienced stigma. We also looked at what factors influenced stigma and the impact of stigma. Last, we discussed how to reduce stigma for autistic people and their families. WHAT DO THE AUTHORS CONCLUDE? We summarized the research findings into a model. Autism stigma is affected by people’s understanding of autism and by visible autistic traits. Poor understanding of autism means that visible autistic traits may be viewed negatively. Certain factors influence the amount of stigma. One factor was the quality and quantity of contact that autistic people have with others. Another factor was cultural differences, such as specific beliefs about autism. Sex and gender were important, as were other differences such as education and age. Last, whether an autistic person had shared their diagnosis affected stigma. Autism stigma had a negative impact on well-being. This included poor mental and physical health, as well as reduced social connections. Autism stigma also led to increased “camouflaging” of autistic traits. Family members also experienced stigma, which can affect their own well-being. Reducing autism stigma is important. To reduce stigma people should create more “autism friendly” spaces. They should include more positive representations of autistic people in the media. They should also improve the autism education of the public and professionals. Last, they should support neurodiversity. WHAT DO THE AUTHORS RECOMMEND FOR FUTURE RESEARCH ON THIS TOPIC? We need to better understand the factors that lead to autism stigma. We also need more effective ways to reduce stigma for autistic people and their families. Including the autistic community in this research process is very important. HOW WILL THIS REVIEW HELP AUTISTIC ADULTS NOW AND IN THE FUTURE? The review shows how stigma affects the autistic community. Autistic adults may find that the model helps them understand their own experiences of stigma. We hope the review will help develop more research into how to reduce autism stigma. Reducing autism stigma will improve the lives of autistic adults. eng.

Lien vers le texte intégral (Open Access ou abonnement)

26. Verhulst I, MacLennan K, Haffey A, Tavassoli T. The Perceived Causal Relations Between Sensory Reactivity Differences and Anxiety Symptoms in Autistic Adults. Autism in adulthood : challenges and management. 2022; 4(3): 183-92.

BACKGROUND: Rates of anxiety are inordinately high in autistic adults. Sensory reactivity differences, such as hyperreactivity (e.g., strong reactions to sound), hyporeactivity (e.g., no, or slower reactions to pain), and seeking (e.g., fascination with spinning objects), are a diagnostic criterion of autism and have been linked with anxiety. Understanding how individuals perceive these to be causally related can impact the assessment and treatment of anxiety. Therefore, we examined the perceived causal relations (PCR) between sensory reactivity differences and anxiety in autistic adults. METHOD: Two hundred forty-six autistic adults aged 18-76 years took part in an online study. They completed self-report assessments of sensory reactivity differences, and anxiety, followed by the PCR scale, indicating whether they perceived their sensory reactivity differences to be more of a cause or an effect of their anxiety symptoms. RESULTS: We found sensory reactivity hyperreactivity, hyporeactivity, and seeking to be significantly correlated with anxiety. Further, we found total sensory hyperreactivity, and visual, auditory, and olfactory hyperreactivity, to be perceived as significantly more of a cause of anxiety than an effect, and total sensory seeking, and tactile and vestibular seeking, to be perceived as significantly more of an effect of anxiety than a cause. CONCLUSION: Future individualized approaches to treating anxiety in autistic individuals may benefit from differentiating between potential sensory causes of anxiety (e.g. hypersensitivities) vs. potential sensory effects of anxiety (e.g. sensory seeking behaviors). WHY IS THIS AN IMPORTANT ISSUE? Autistic people are more likely to experience anxiety compared with the general population. Sensory reactivity differences, such as hyperreactivity (e.g., strong reactivity to sounds), hyporeactivity (e.g., not noticing touch), or seeking (e.g., being fascinated by spinning objects), are common in autistic individuals, and may be a risk factor for anxiety. However, existing anxiety treatments are not always effective for autistic people. Understanding how autistic people feel their anxiety and sensory reactivity differences are causally linked could be important to help clinicians understand the challenges that should be prioritized in anxiety treatment for autistic people. WHAT WAS THE PURPOSE OF THIS STUDY? In this study, we aimed at examining sensory reactivity differences and anxiety symptoms in autistic adults, and asking them whether they perceive their anxiety symptoms to be more of a cause or an effect of their sensory reactivity differences. WHAT DID THE RESEARCHERS DO? In our study, we measured sensory reactivity differences and anxiety symptoms using online surveys. For the sensory reactivity differences and anxiety symptoms that each individual reported to be present, they were then asked how much they felt each anxiety symptom was a cause of their sensory reactivity differences, and how much they felt each sensory reactivity difference was a cause of their anxiety symptoms. This study included 246 autistic adults aged 18–76 years. WHAT WERE THE RESULTS OF THE STUDY? Our results showed that the autistic individuals felt that their sensory hyperreactivity, including hyperreactivity related to vision, hearing, and scent, is more of a cause than an effect of anxiety. However, they also felt that their sensory seeking, especially touch- and balance-related seeking, is more of an effect than a cause of anxiety. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Although sensory hyperreactivity has been shown earlier to be a cause of anxiety for autistic individuals, our study was the first to suggest that anxiety may influence sensory seeking, which is something that can be tested in future research studies. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? We did not ask participants about co-occurring conditions, such as if they have additional diagnoses related to intellectual disability or attention deficit hyperreactivity disorder, which means there may be important differences between individuals that we did not examine. Also, we did not measure key symptoms associated with wider anxiety conditions and autism-related anxiety symptoms, such as social fears unrelated to negative self-assessment, which would be important for clinical understanding. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? Understanding how people perceive their traits and symptoms to be causally related can impact how effective anxiety treatments are for individuals. So, our findings can importantly help inform clinical approaches to the treatment of anxiety for autistic individuals. eng.

Lien vers le texte intégral (Open Access ou abonnement)

27. Linsao AW, McKiernan PM, Morgan SM. Mental health providers’ perceptions of competency when working with autistic children with co-occurring mental health diagnoses. Journal of community psychology. 2023.

Psychotherapy research has long focused on provider competence and treatment efficacy. Mental health providers treat diverse client populations with varying, complex needs. Though estimates vary, the rate of children diagnosed with autism and a co-occurring psychiatric disorder is relatively high. While behavioral approaches to treatment have been established as the gold standard, talk-based therapies are increasingly common, and a broader range of providers are treating this population. There are gaps in the literature regarding empirically supported, targeted approaches, and provider sense of competency in addressing complex needs. The aim of this secondary qualitative analysis was to gain further insights into mental health providers’ experiences of psychotherapy with autistic children with a cooccurring diagnosis. Eleven licensed clinicians participated in semistructured interviews. The following themes emerged: perception of competency, complex needs, and family involvement. Recommendations for a collaborative approach, increased opportunities for training, and standardized, targeted assessments and treatment protocols were made.

Lien vers le texte intégral (Open Access ou abonnement)

28. Siecinski SK, Giamberardino SN, Spanos M, Hauser AC, Gibson JR, Chandrasekhar T, Trelles MDP, Rockhill CM, Palumbo ML, Cundiff AW, Montgomery A, Siper P, Minjarez M, Nowinski LA, Marler S, Kwee LC, Shuffrey LC, Alderman C, Weissman J, Zappone B, Mullett JE, Crosson H, Hong N, Luo S, She L, Bhapkar M, Dean R, Scheer A, Johnson JL, King BH, McDougle CJ, Sanders KB, Kim SJ, Kolevzon A, Veenstra-VanderWeele J, Hauser ER, Sikich L, Gregory SG. Genetic and epigenetic signatures associated with plasma oxytocin levels in children and adolescents with autism spectrum disorder. Autism research : official journal of the International Society for Autism Research. 2023.

Oxytocin (OT), the brain’s most abundant neuropeptide, plays an important role in social salience and motivation. Clinical trials of the efficacy of OT in autism spectrum disorder (ASD) have reported mixed results due in part to ASD’s complex etiology. We investigated whether genetic and epigenetic variation contribute to variable endogenous OT levels that modulate sensitivity to OT therapy. To carry out this analysis, we integrated genome-wide profiles of DNA-methylation, transcriptional activity, and genetic variation with plasma OT levels in 290 participants with ASD enrolled in a randomized controlled trial of OT. Our analysis identified genetic variants with novel association with plasma OT, several of which reside in known ASD risk genes. We also show subtle but statistically significant association of plasma OT levels with peripheral transcriptional activity and DNA-methylation profiles across several annotated gene sets. These findings broaden our understanding of the effects of the peripheral oxytocin system and provide novel genetic candidates for future studies to decode the complex etiology of ASD and its interaction with OT signaling and OT-based interventions. LAY SUMMARY: Oxytocin (OT) is an abundant chemical produced by neurons that plays an important role in social interaction and motivation. We investigated whether genetic and epigenetic factors contribute to variable OT levels in the blood. To this, we integrated genetic, gene expression, and non-DNA regulated (epigenetic) signatures with blood OT levels in 290 participants with autism enrolled in an OT clinical trial. We identified genetic association with plasma OT, several of which reside in known autism risk genes. We also show statistically significant association of plasma OT levels with gene expression and epigenetic across several gene pathways. These findings broaden our understanding of the factors that influence OT levels in the blood for future studies to decode the complex presentation of autism and its interaction with OT and OT-based treatment.

Lien vers le texte intégral (Open Access ou abonnement)