1. Correction to: Exploring the Experiences of Autistic Transgender and Non Binary Adults in Seeking Gender Identity Health Care, by Bruce et al. Autism Adulthood 2023;5(2):191-203; doi: 10.1089/aut.2023.0003. Autism in adulthood : challenges and management. 2023; 5(3): 343.

[This corrects the article DOI: 10.1089/aut.2023.0003.].

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2. Correction to: Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits, by Ratto et al. Autism Adulthood 2023;5(1):93-105; doi: 10.1089/aut.2021.0099. Autism in adulthood : challenges and management. 2023; 5(3): 344.

[This corrects the article DOI: 10.1089/aut.2021.0099.].

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3. Ballantine J, Rocheleau J, Macarios J, Ross G, Artemeva N. « Change Isn’t Exactly Easy »: Autistic University Students’ Lived Learning Experiences During the COVID-19 Pandemic. Autism in adulthood : challenges and management. 2023; 5(3): 325-34.

BACKGROUND: The COVID-19 (coronavirus disease 2019) pandemic-related isolation measures caused significant unexpected changes in learning experiences for all university students, including autistic students. So far, there has been a lack of information on autistic university students’ lived learning experiences caused by the changes in the teaching delivery formats from face-to-face to online during this time. Our study addressed this gap by investigating eight autistic students’ reported learning experiences during the rapid changes caused by the pandemic and discussing student-advocated learning supports. METHODS: The participants in this qualitative study were eight formally or self-diagnosed, English-speaking, autistic undergraduate and graduate university students from a mid-sized Canadian university. Participants took part in semi-structured interviews that focused on their learning experiences and preferences before and during the pandemic, including what supports they found helpful. To analyze and interpret the data, autistic and nonautistic researchers used reflexive thematic analysis and a consultative participatory approach. RESULTS: Our findings suggest that individual (i.e., organizational skills; mental health), interactional (i.e., prior experiences interacting with instructors and teaching assistants), and environmental (i.e., sensory environments, class sizes, virtual learning environments) factors, which were interrelated, determined the nature and quality of these autistic students’ learning experiences and their academic preferences during the pandemic. We also found that each autistic student reported unique learning experiences and needed individualized supports for their learning. CONCLUSIONS: Several interrelated factors (individual, interactional, and environmental) affected the nature and quality of autistic university students’ experiences during the pandemic. Each student had unique experiences and needed individualized supports. WHAT WAS THE PURPOSE OF THIS STUDY? During the COVID-19 pandemic, all university students experienced rapid unexpected changes in teaching and learning formats when they had to switch from face-to-face learning to online platforms. There is almost no published information on autistic students’ learning experiences during the pandemic. The purpose of this study was to understand eight autistic university students’ reported lived learning experiences during the COVID-19 pandemic and to discover potential academic supports that the students identified. WHAT DID THE RESEARCHERS DO? We interviewed eight Canadian autistic university students (five undergraduates and three graduates) about their lived academic experiences before and during the pandemic, focusing on their experiences with changes from face-to-face to online learning. We also asked them about effective academic supports that universities could provide. Autistic and nonautistic researchers worked together to analyze the participants’ responses. WHAT WERE THE FINDINGS OF THE STUDY? The study found that individual, interactional, and environmental factors combined to affect these university autistic students’ lived learning experiences and their preferences for either online or in-person learning. Specifically, first, we found that each student’s ability to study independently in an organized way and their personal mental health concerns such as anxiety management were key in deciding their learning preferences. Second, each student’s prior success in socially interacting with instructors and teaching assistants was important in their preferences for online or in-person learning. Third, each student’s sensory experiences on campus and at home including factors such as having to attend large noisy classes or the availability of quiet home-based learning environments were important. We also found that each autistic student experienced learning uniquely and required individualized supports. In this study, the three graduate students reported wanting to return to in-person learning as soon as possible, whereas most undergraduate students preferred online learning. WHAT ARE THE POTENTIAL WEAKNESSES IN THE STUDY? We were not able to recruit as many or as diverse a group of students as we would have liked. Additionally, although autistic co-researchers took part in the coding, analysis, and writing of this study, they did not contribute to the earlier design or data collection. In the future, we plan to fully involve autistic co-researchers from the start to ensure we produce research that addresses the expressed needs of autistic people. HOW DO THESE FINDINGS HELP AUTISTIC ADULTS? This study provided evidence of eight autistic university students’ lived learning experiences and preferences during the pandemic and described supports that the students indicated were important in helping them learn effectively at university. HOW DO THESE FINDINGS ADVANCE THE LITERATURE? This small-scale study provided early evidence about these autistic university students’ preferences for online or in-person learning and the reasons for these preferences. These findings can be used to expand this study to include a greater number and diversity of students to investigate how other factors such as race, economic status, presence of co-occurring conditions (e.g., learning disabilities), and others may also influence autistic university students’ learning preferences. eng.

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4. Belcher HME, Love CE, Segal AH, Lopez-Arvizu C. Intellectual and Developmental Disability Research: Success Through Inclusion and Equity. American journal on intellectual and developmental disabilities. 2023; 128(5): 371-4.

« Toward Equity in Research on Intellectual and Developmental Disabilities » (IDD) is a timely and comprehensive article highlighting gaps in the « dominant culture » approach to current research strategies designed to address IDD. Recentering systems involved in the research enterprise are recommended. This commentary provides additional guidance from a social justice, equity, and inclusion lens, including a clinical anthropology approach to research.

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5. Bernardi K, Prono F, Bruni G, Panerai S, Ferri R, Bruni O. Sleep disturbances in subjects with autism spectrum disorder: A parental perspective. Sleep medicine. 2023; 110: 220-4.

OBJECTIVE: To investigate the prevalence of sleep disturbances (SDs), their related comorbidities, interventions and the impact on the family for individuals with current SDs and those who had SDs in the past. METHODS: Members of the Italian national association of parents of persons with autism (ANGSA) completed an anonymous online survey collecting demographic data, the presence of comorbidities and specific information on sleep arrangement and sleep disorders using a modified version of the of the Sleep Disturbance Scale for Children (SDSC). RESULTS: The final sample consisted of 143 participants, 90 patients presented current SDs (C_SDs) and 53 reported previous SDs (P_SDs). In the C_SDs group, the most prevalent sleep disorders were related to insomnia and, especially, difficulty falling asleep; a high number of individuals presented with restless sleep. Also, the parents in the P_SDs group retrospectively reported a high prevalence of insomnia with difficulty falling asleep, night awakenings and restless sleep. Parents reported that sleep hygiene practice were effective in less than one third of cases in both groups and the most used compound was immediate-release melatonin, followed by antihistamines and then benzodiazepines, antipsychotics, and antidepressants, with approximately 60-70% reported efficacy. Parents of both groups reported that insomnia negatively affected their children behavior and caused stress, mood changes or physical fatigue in their daily life. CONCLUSION: Our study shows that insomnia is most prevalent in individuals with autism with several consequences on children and family behavior and quality of life. As reported by parents, melatonin might be helpful for sleep disturbances in these children and the causes of restless sleep need further investigations.

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6. Binder MS, Bordey A. The Novel Somatosensory Nose-Poke Adapted Paradigm (SNAP) Is an Effective Tool to Assess Differences in Tactile Sensory Preferences in Autistic-Like Mice. eNeuro. 2023; 10(8).

One of the most prevalent deficits in autism spectrum disorder (ASD) are sensitivities to sensory stimuli. Despite the prevalence of sensory deficits in autism, there are few paradigms capable of easily assessing sensory behaviors in ASD-like mouse models. We addressed this need by creating the Somatosensory Nose-poke Adapted Paradigm (SNAP), which consists of an elevated platform with 6 holes in the center, half of which are lined with sandpaper and half are smooth, requiring mice to use their whiskers to sense the texture. The SNAP paradigm assesses tactile sensory preferences as well as stereotypy, anxiety, and locomotion. We used two wild-type (neurotypical) mouse strains, C57BL/6J (C57) inbred and CD-1 outbred mice, and two ASD mouse models, BTBR (a model of idiopathic ASD) and Cntnap2 (-/-) mice (a model of syndromic ASD). We found that both ASD models produced more nose pokes into the rough condition than the smooth condition, suggesting an increased preference for complex tactile stimulation when compared with the neurotypical groups, wherein no differences were observed. Furthermore, we found increased stereotypy and time spent in the center, suggestive of decreased anxiety, only for BTBR mice compared with the other mouse strains. Overall, SNAP is an easy to implement task to assess the degree of preference for complex tactile stimulation in ASD mouse models that can be further modified to exclude possible confounding effects of novelty or anxiety on the sensory preferences.

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7. Briend F, Barantin L, Cléry H, Cottier JP, Bonnet-Brilhault F, Houy-Durand E, Gomot M. Glutamate levels of the right and left anterior cingulate cortex in autistics adults. Progress in neuro-psychopharmacology & biological psychiatry. 2023; 126: 110801.

BACKGROUND: The neurobiology of Autism Spectrum Disorder (ASD) is still unknown. Alteration in glutamate metabolism might translate into an imbalance of the excitation/inhibition equilibrium of cortical networks that in turn are related to autistic symptoms, but previous studies using voxel located in bilateral anterior cingulate cortex (ACC) failed to show abnormalities in total glutamate level. Due to the functional differences in the right and left ACC, we sought to determine whether a difference between right and left ACC glutamate levels could be found when comparing ASD patients and control subjects. METHODS: Using single-voxel proton magnetic resonance spectroscopy ((1)H-MRS), we analyzed the glutamate + glutamine (Glx) concentrations in the left and right ACC of 19 ASD patients with normal IQs and 25 matched control subjects. RESULTS: No overall group differences in Glx were shown, in the left ACC (p = 0.24) or in the right ACC (p = 0.11). CONCLUSIONS: No significant alterations in Glx levels were detected in the left and right ACC in high-functioning autistic adults. In the excitatory/inhibitory imbalance framework, our data reinforce the critical need to analyze the GABAergic pathway, for better understanding of basic neuropathology in autism.

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8. Cai RY, Love A, Robinson A, Gibbs V. The Inter-Relationship of Emotion Regulation, Self-Compassion, and Mental Health in Autistic Adults. Autism in adulthood : challenges and management. 2023; 5(3): 335-42.

BACKGROUND: Emotion regulation is one of the key factors that influence mental health outcomes in autistic and nonautistic populations. Recent research has also identified self-compassion as a negative correlate of depression and positive correlate of psychological well-being in autistic adults. Empirical evidence from the general population supports the notion that being kind and compassionate toward oneself during stressful and difficult moments can help with one’s ability to regulate negative emotions, which then has flow-on effects on mental health outcomes. However, the inter-relationship between self-compassion, emotion regulation, and mental health has not been examined in autistic samples. Therefore, the aim of this study was to determine if emotion regulation mediates the relationship between self-compassion and anxiety or depression in a sample of autistic adults. METHODS: Participants were 153 adults (mean(age) = 35.70, standard deviation(age) = 12.62) who had either self-reported a clinical diagnosis of autism spectrum disorder or self-identified as autistic. They completed an online survey capturing self-compassion, emotion regulation, anxiety, and depression. We hypothesized that emotion regulation would mediate the relationship between self-compassion and anxiety or depression, and self-compassion would not mediate the relationship between emotion regulation and anxiety or depression. RESULTS: As predicted, only emotion regulation mediated the relationship between self-compassion and mental health outcomes. Self-compassion did not mediate the relationship between emotion regulation and mental health outcomes. CONCLUSION: This study provides preliminary evidence for the role that self-compassion plays in improving emotion regulation and mental health in autistic adults. If this mechanism of emotion regulation mediating the relationship between self-compassion and mental health is consistently found in future studies, then it would be helpful for future research to examine the clinical benefits of including a self-compassion component in emotion regulation interventions to improve mental health outcomes of autistic adults. WHY IS THIS AN IMPORTANT ISSUE? Many autistic individuals are diagnosed with mental illnesses such as anxiety or depression. Having a mental illness leads to negative consequences such as feelings of loneliness and sleep problems. Research findings show that improving autistic people’s ability to regulate emotions can reduce symptoms of mental illnesses. Being compassionate toward ourselves during stressful and difficult moments can help us better regulate our negative emotions such as anger, sadness, and fear. Better emotion regulation then improves mental health. Research in the general population supports this proposal. But no research has studied the relationship between self-compassion, emotion regulation, and mental health in autistic adults. WHAT WAS THE PURPOSE OF THIS STUDY? This study aims to look at the relationship between self-compassion, emotion regulation, and mental health in a sample of autistic adults. WHAT DID THE RESEARCHERS DO? We designed an online survey and asked autistic adults to complete this survey. Several autism and autistic organizations around the world helped us spread the word about this study (we are grateful for their support!). The survey contained questions capturing people’s self-compassion levels, emotion regulation difficulties, and symptoms of anxiety and depression. One hundred and fifty-three autistic adults completed the survey. These participants either self-reported a diagnosis of autism or self-identified as autistic. WHAT WERE THE RESULTS OF THE STUDY? We found that autistic adults with higher levels of self-compassion had better emotion regulation and fewer symptoms of anxiety and depression. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Researchers and clinicians have designed various treatments to improve autistic people’s emotion regulation. And we know that some of these treatments also improve mental health. We need to identify the components that should be included in the treatments to make them most effective. If future research continues to find this relationship between self-compassion, emotion regulation, and mental health, then adding a self-compassion component to emotion regulation treatments may be helpful. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? This study has several weaknesses: Online survey design—we could not conduct diagnostic assessments to confirm the participant’s autism diagnosis. But we have used a questionnaire called the Autism Spectrum Quotient; all participants who self-identified as autistic met the cutoff for autism.Data collection—we collected data from participants at one point, which meant we could not identify the direction of the relationships between variables.Gender of autistic people—a larger proportion of our participants were women, which does not match the typical autism gender ratio of 1:4 (female:male). HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We hope this study will start the conversation on the relevance of increasing self-compassion for improving emotion regulation and mental health in autistic adults. Therefore, this study may inform the design of future interventions for improving autistic adults’ emotion regulation and mental health. eng.

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9. Carter SA, Lin JC, Chow T, Martinez MP, Alves JM, Feldman KR, Qiu C, Page KA, McConnell R, Xiang AH. Maternal obesity and diabetes during pregnancy and early autism screening score at well-child visits in standard clinical practice. Autism : the international journal of research and practice. 2023: 13623613231188876.

Early intervention and treatment can help reduce disability in children diagnosed with autism spectrum disorder. Screening for autism spectrum disorder in young children identifies those at increased likelihood of diagnosis who may need further support. Previous research has reported that exposure to maternal obesity and diabetes during pregnancy is associated with higher likelihood of autism spectrum disorder diagnosis in children. However, little is known about whether these maternal conditions are associated with how very young children score on autism spectrum disorder screening tools. This study examined associations between exposure to maternal obesity and diabetes during pregnancy and offspring scores on the Quantitative Checklist for Autism in Toddlers, an autism spectrum disorder screening questionnaire administered between 18-24 months at well-child visits. A higher score on the Quantitative Checklist for Autism in Toddlers suggests a higher likelihood of autism spectrum disorder; children with scores 3 or greater are referred to developmental pediatricians for evaluation. Our study found that children of mothers with obesity or diabetes during pregnancy had higher scores than children whose mothers did not have these conditions. Associations with maternal obesity and gestational diabetes diagnosed at or before 26 weeks of pregnancy were also present in children who did not have later autism spectrum disorder diagnoses, suggesting that exposure to these conditions during early pregnancy may be associated with a broad range of social and behavioral abilities. Identifying associations between maternal health conditions and early Quantitative Checklist for Autism in Toddlers screening scores could influence future screening and provision of support for children of mothers with these conditions.

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10. Dong H, Wang T, Feng J, Xue Y, Jia F. The relationship between screen time before bedtime and behaviors of preschoolers with autism spectrum disorder and the mediating effects of sleep. BMC psychiatry. 2023; 23(1): 635.

BACKGROUND: There are overlapping effects of screen time and sleep on children’s behavior. The purpose of this study was to explore the relationship of screen time with behavior problems in children with autism spectrum disorder (ASD) and the probable mediating effects of sleep, in order to provide evidence for the need for clinical identification and intervention. METHODS: A sample of 358 preschoolers with ASD were included. We investigated the children’s basic characteristics of sex and age, ASD symptoms (ABC, CARS, and ADOS-2), neurodevelopment (GDS-C), sleep habits (CSHQ), and behavior (CBCL). Pearson correlation tests were used to determine the direct correlations among children’s screen time, CBCL, and CSHQ. Linear regression analysis was used to explore whether screen time predicted total score of CBCL. Multi-step linear regression analysis was used to investigate the mediating effect of sleep on the relationship between screen time and total score of CBCL. RESULTS: Screen time before bedtime was correlated with CBCL and CSHQ, which indicated that screen time before bedtime was correlated with sleep and behavior in children with ASD. Screen time before bedtime was a predictor of CBCL total score (indicating children’s behavior), and CSHQ total score (indicating children’s sleep habits) played a partial mediating role between screen time before bedtime and children’s behavior. CONCLUSION: Clinicians should support and educate parents of children with ASD, which should focus on managing screen time, especially screen time before bedtime.

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11. Gandhi R, Jackson J, Puranik CP. A comparative evaluation of video modeling and social stories for improving oral hygiene in children with autism spectrum disorder: A pilot study. Special care in dentistry : official publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry. 2023.

INTRODUCTION: The purpose of this pilot study was to compare video modeling (VM) to a toothbrushing social story (TSS) for improving oral hygiene in children with autism spectrum disorder (ASD). METHODS: Four to 17-year-old children and adolescents with ASD were evaluated at a pre-intervention visit for quality of oral hygiene using plaque and gingival indices. A pre-intervention survey assessed caregivers’ perceptions of their children’s daily oral hygiene practices. Participants were randomized into VM or TSS groups and caregivers received daily emails to access a VM or TSS presentation when completing toothbrushing for their child for 30 days. At the one-month visit, oral hygiene was re-evaluated, and post-intervention surveys were completed. RESULTS: There were significant improvements in plaque and gingival scores for VM (0.68 ± 0.20; 0.59 ± 0.15) and TSS (0.50 ± 0.11; 0.40 ± 0.10) groups at post-intervention compared to pre-intervention visits. No significant improvements in plaque or gingival scores were noted between the VM and TSS groups. Caregivers’ perceptions regarding oral hygiene acceptance by their children was promising for the VM group. CONCLUSIONS: VM and TSS interventions improved oral hygiene in subjects with ASD. There was greater acceptance of daily oral hygiene in the VM compared to the TSS group.

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12. Geelhand P, Papastamou F, Belenger M, Clin E, Hickman L, Keating CT, Sowden S. Autism-Related Language Preferences of French-Speaking Autistic Adults: An Online Survey. Autism in adulthood : challenges and management. 2023; 5(3): 275-88.

BACKGROUND: In recent years, there have been increasing discussions surrounding the appropriate terminology to talk about autism. Initially, this debate revolved around the use of person-first language (e.g., person with autism) versus identity-first language (IFL; e.g., autistic person) but has recently expanded to other autism-related terms (e.g., deficits). However, to date, studies investigating autism-related language preferences have been limited to English-speaking countries, and little is known about preferences in other languages. This study addresses this gap by investigating the language preferences of French-speaking autistic adults. METHODS: Five hundred and forty-one French-speaking autistic adults (formal diagnosis and self-identified) completed an online survey where they selected terms they preferred to use to talk about: (1) the nomenclature of autism; (2) an autistic person; (3) someone’s autistic identity; (4) autism more broadly; (5) the abilities of autistic people; and (6) people without a diagnosis of autism. Participants also revealed more about their language preferences via an open-text response. RESULTS: The most preferred terms were « Autisme, » « Personne autiste, » « Autiste, » « Est Autiste, » « Différence neurologique/cérébrale, » « Différences, » « Difficultés, » « Personne neurotypique, » « Neurotypique, » and « Personne non-autiste. » To better understand these preferences, participants’ open comments were analyzed, revealing further support for IFL and the social model of disability, and a preference for simple, precise, and validated terms. CONCLUSIONS: These results are consistent with autism terminology preferences in English-speaking countries and provide additional insight into the reasons underlying these preferences. Such work has implications for informing the language of researchers, clinicians, and other professionals in the field, as well as the general public. COMMUNITY BRIEF: Why is this an important issue?: More and more research is investigating which words should be used to talk about autism. Initially, this discussion revolved around the use of person-first language (e.g., person with autism) versus identity-first language (e.g., autistic person) but has recently expanded to other autism-related terms (e.g., disorder, deficits, high-functioning autism). To date, all the studies on this topic have focused on language preferences in English-speaking countries, and little is known about preferences in other languages.What was the purpose of this study?: We wanted to know whether French-speaking autistic adults would show similar or different autism-related language preferences than English-speaking autistic individuals. We also wanted to know the reasons for these language preferences.What did the researchers do?: In an online survey, we asked 541 French-speaking autistic adults around the world what terms they prefer to use to talk about (1) the nomenclature of autism, (2) an autistic person, (3) someone’s autistic identity, (4) autism more broadly, (5) the abilities of autistic people, and (6) someone without an autism diagnosis. Participants also had the opportunity to tell us more about their language preferences in an open comment.What were the results of this study?: The most preferred terms were “Autisme,” “Personne autiste,” “Autiste,” “Est Autiste,” “Différence/neurologique,” “Différences,” “Difficultés,” “Personne neurotypique,” “Neurotypique,” and “Personne non autiste.” To better understand the reasons underlying these preferences, participants’ open comments were analyzed, revealing further support for identity-first language and the social model of disability, and a preference for simple, precise, and validated terms. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? We previously knew about language preferences of English-speaking autistic people. This study extends these findings by showing that French-speaking autistic adults also prefer terms that reflect the ideas of identity-first language (e.g., “Est Autiste,” “Personne autiste”) and the social model of disability (e.g., “Différence,” “Handicap”). We also show that these are not the only reasons behind language preferences: Term simplicity, precision, and validity are also important when talking about autism.What are the potential weaknesses in the study?: The reported preferences are not representative of all autistic individuals, as our sample did not include children and adolescents. In addition, we did not make specific adaptations to our questionnaire for non-speaking people or people with intellectual difficulties, so we do not know to what extent their opinions are represented in our data. Further, recruitment was done almost exclusively online, resulting in a self-selecting recruitment method for our sample (i.e., participants who have access to Internet and a computer). Finally, participants who responded to the advertisements and completed the questionnaire are probably interested in the debate regarding language to talk about autism. Therefore, our sample may be more representative of the online autistic, pro-neurodiversity community.How will these findings help autistic adults now or in the future?: This study is the first to look at the language preferences of French-speaking autistic adults. Further, our results have substantial implications for informing the language of researchers, clinicians, and other professionals in the field, as well as the general public. eng.

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13. Johnson KR. The Equity Agenda in Intellectual and Developmental Disabilities Research. American journal on intellectual and developmental disabilities. 2023; 128(5): 379-81.

This commentary on Kover and Abbeduto (2023) underscores the critical importance of naming and framing toward an equity agenda in intellectual and developmental disabilities research. More specifically, I briefly outline (1) why racialization is an important anchor in IDD discourse; (2) whiteness as a necessary point of discussion; and (3) the adoption of critical inquiry and critical praxis.

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14. King TM, Parisi MA. Moving the Needle Toward Equity: What NIH Is Doing to Promote Diversity, Inclusion, and Accessibility in Research on Intellectual and Developmental Disabilities. American journal on intellectual and developmental disabilities. 2023; 128(5): 382-5.

As a major funder of research on intellectual and developmental disabilities (IDD), NIH has a broad view of the profound impact of cultural and structural barriers on the characteristics of IDD study populations and the composition of the IDD research workforce. While long overdue, multiple efforts are currently underway across NIH aimed at addressing these barriers and increasing meaningful representation in biomedical and behavioral research.

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15. Kover ST, Abbeduto L. The Work Ahead for Intellectual and Developmental Disabilities Research. American journal on intellectual and developmental disabilities. 2023; 128(5): 388-92.

In « Toward Equity in Research on Intellectual and Developmental Disabilities, » we sought to make entrenched assumptions and practices of intellectual and developmental disabilities research visible by explicitly describing the status quo in terms of models of disability, participant and researcher identities, research priorities, and biases in measurement and treatment approaches. We then curated individual- and systems-level actions drawn from disability justice and broader social justice lenses to offer a way forward. We focused on three major areas (i.e., intersectionality and person-centered approaches, participatory research, and interprofessional collaboration), depicting influences, methods, and actions in a framework of disability, identity, and culture. In this Author Response, we address five commentaries that critique and extend that synthesis.

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16. Kover ST, Abbeduto L. Toward Equity in Research on Intellectual and Developmental Disabilities. American journal on intellectual and developmental disabilities. 2023; 128(5): 350-70.

Lack of diversity in IDD research is typically conceptualized only in terms of (1) recruitment of samples that do not appropriately represent the sociodemographics of the population, or (2) the limited number of researchers from historically marginalized backgrounds. Critically, the field also suffers from over-reliance on perspectives and social systems of dominant culture-both in how disability is regarded and in relation to other dimensions of identity and culture. These lenses lead to research findings that reinforce, rather than reduce, social inequities. We propose a framework that minimizes reliance on diagnostic categories, shifts from deficit- to person-centered models, acknowledges people’s multiple identities, and includes self-advocates and diverse communities as partners in the research enterprise. The systems change necessary to support this framework is described.

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17. Mason D, Milner V, Clark L, Kelly E, Pyefinch R, Happé F. Autistic People and Moving Home: A Systematic Review. Autism in adulthood : challenges and management. 2023; 5(3): 236-47.

BACKGROUND: While many studies have examined where and with whom autistic people live, very few have looked at autistic people’s experience of moving home. Choosing where to live, and being able to move residence, could be important for autonomy, and we therefore undertook a systematic review to identify studies about autistic adults’ experience of moving home. METHODS: We entered search terms relevant to autism and moving home into six databases and Google Scholar. After screening the titles and abstracts, we identified a final set of articles and screened the full text. We then checked the reference lists for potentially relevant articles; then, we conducted a search for articles that cited our final set of articles. Three raters assessed each included article for methodological quality. RESULTS: The search strategy identified a total of 311 articles (initial search, ancestry searching, articles from other sources). After deduplication, we screened a total of 165 articles for eligibility. A final set of seven articles was identified. Our narrative synthesis of the articles suggests that both autistic people and the relatives of autistic people think living independently is a source of positive personal development. However, autistic people reported that poor employment prospects impacted on their financial independence and hence independent living. Parents highlighted concerns about their offspring’s personal care, safety, and the difficulty of navigating the housing system for those autistic people with co-occurring intellectual disability. CONCLUSIONS: Taken together, our review suggests that autistic people and those who care for them have a positive view of independent living and are aware of the barriers to achieving this. Our review highlights a gap in the understanding of autistic adults’ experience of moving home. We briefly describe our ongoing research project [the « Moving (as an) Autistic Person » project] exploring autistic people’s experiences of moving house. WHY IS THIS TOPIC IMPORTANT? Many research studies find that autistic people do not live independently—many autistic people live with their parents or in sheltered accommodation. As our knowledge about autistic people, and the diversity of their life experiences, increases, it is important to investigate a range of real-life transitions. So far, the transition to independent living has not been reviewed (specifically, the process of moving from one living place to another). WHAT IS THE PURPOSE OF THIS ARTICLE? We reviewed published studies to try and find all the available studies that may have looked at the process of moving home for autistic people. WHAT DID THE AUTHORS DO? We designed a search method to find all the articles that were relevant to this question. We searched six academic databases and used Google Scholar. WHAT DID YOU FIND ABOUT THIS TOPIC? We found that there were no studies which looked at the specific question of what autistic people experience when they move home. However, we did find some studies which looked at the benefits of living independently (with reports from autistic people and from the parents of autistic people). We also found one study which looked at the choices autistic people have in where, and with whom, they live. WHAT DO THE AUTHORS RECOMMEND? Based on the included studies, it does seem that autistic people may benefit from living independently. However, we do note that the issue of independent living cannot be examined without consideration of other factors, such as employment. Also, it is not universally the case that all autistic adults prefer, or will benefit from, living independently. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We aim to use the findings of this review, alongside our ongoing mixed-methods study of autistic people’s experiences, to design a tailored co-produced resource to help autistic people plan for moving home. eng.

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18. Rasga C, Santos JX, Café C, Oliveira A, Duque F, Posada M, Nunes A, Oliveira G, Vicente AM. Prevalence of Autism Spectrum Disorder in the Centro region of Portugal: a population based study of school age children within the ASDEU project. Frontiers in psychiatry. 2023; 14: 1148184.

INTRODUCTION: Accurate prevalence estimates for Autism Spectrum Disorder (ASD) are fundamental to adequately program medical and educational resources for children. However, estimates vary globally and across Europe, and it is therefore wise to conduct epidemiological studies in defined geo-cultural contexts. METHODS: We used a population screening approach to estimate the prevalence of ASD in the Centro region of Portugal, using a harmonized protocol as part of the Autism Spectrum Disorders in the European Union (ASDEU) project. RESULTS: The overall prevalence was estimated at 0.5% (95% CI 0.3-0.7), higher in schools with Autism Units (3.3%, 95%CI 2.7-3.9) than in regular schools (0.3%, 95% CI 0.1-0.5) or schools with Multiple Disability Units (0.3%, 95% CI 0.04-0.6). DISCUSSION: The results indicate that the diagnosis of ASD is followed by the most effective educational policies in Centro Region. The variability in prevalence estimates across the different regions from the ASDEU project, and globally, is discussed.

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19. Realpe AX, Mills N, Beasant L, Douglas S, Kenny L, Rai D. Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic. Autism in adulthood : challenges and management. 2023; 5(3): 301-10.

BACKGROUND: The COVID-19 pandemic resulted in large-scale public health restrictions and lockdowns across many countries. There is an increasing literature on the varied impact of such lockdowns in autistic adults. However, there is very little research on how the pandemic and related public health measures may impact the willingness of autistic people in engaging and taking part in research. The aim of this qualitative study was to explore autistic adults’ experiences of the COVID-19 lockdown and how the pandemic may affect future research participation. METHODS: We conducted in-depth interviews with 31 autistic adults between March and July 2020. Transcripts were analyzed thematically within a critical realism framework. RESULTS: Participants identified positive aspects of lockdown such as enjoying the lack of social pressures and using their well-developed skills for dealing with uncertainty. Autistic people also shared challenges of adjusting to lockdown, for example, rapid change in daily routines. While hopeful about the freedom gained from easing restrictions, participants were concerned about the inconsistent communication and application of rules during the transition out of lockdown. This may have exacerbated already rising mental health issues among autistic people. The participants viewed research participation and engagement with increased relevance during the pandemic and welcomed efforts to conduct research using online methods of communication. CONCLUSION: The COVID-19 lockdown had a varied effect in the lives and routines of autistic people. However, health care providers and researchers need to be mindful of rising mental health issues in the aftermath of the pandemic, especially for people who were already vulnerable. The response to the pandemic may have offered opportunities for innovation in research processes enabling more autistic people to engage with research and making studies more inclusive. WHY IS THIS AN IMPORTANT ISSUE? We did not know how the pandemic and the strict restrictions that followed would affect autistic people’s well-being and mental health.Also, there was a worry that the pandemic would affect the number of volunteers taking part in research that matters the most to autistic people. Thus, it was important to understand any implications for the way we conduct research with the autistic community after the pandemic. WHAT WAS THE PURPOSE OF THIS STUDY? We explored the experiences of autistic people living through the first 6 months of the COVID-19 lockdown in the United Kingdom. We were particularly interested in autistic people’s views on how the pandemic may affect them taking part in research. WHAT DID THE RESEARCHERS DO? We co-produced this interview study to answer our research questions. We carried out in-depth interviews with 31 autistic people. We looked for patterns or themes in what the participants said. WHAT WERE THE RESULTS OF THE STUDY? Autistic people we interviewed reported being able to enjoy a quieter pace of life. They felt less anxious early in the lockdown. But they also faced great challenges adjusting to changes in their daily routines. Inconsistent public health communication caused worry during the transition out of lockdown. Unnecessary stress might have led to worsening of mental health issues in some people. Our participants held positive views on taking part in and engage with research, despite the pandemic. We identified opportunities that could make research more inclusive for autistic people, for example, online methods for taking consent and taking part in research remotely. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Our study adds to the evidence of the varied responses of autistic people to the pandemic and the public health measures that it led to. One important strength of our work is our focus on the impact of the pandemic on research and implications of future research. We learnt that autistic people welcome and value the use of online technology to reach study participants. Wider use of remote technology can make research more inclusive and participatory. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? Many of our participants were already had experience participating in research. Also most had relatively high education levels. We did not include autistic people with intellectual disabilities. We did not collect information on ethnicity. Our sample is likely to have little ethnic diversity. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We describe the experiences of autistic people in the face of unprecedented circumstances. We found the need for clear public health communication to avoid unnecessary stress. The pandemic has provided the opportunity for a wider use of remote methods of research, even in areas where this was not done in the past (e.g., clinical trials). Our study found that such approaches would make research more inclusive. eng.

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20. Rodin RE, Dou Y, Kwon M, Sherman MA, D’Gama AM, Doan RN, Rento LM, Girskis KM, Bohrson CL, Kim SN, Nadig A, Luquette LJ, Gulhan DC, Park PJ, Walsh CA. Author Correction: The landscape of somatic mutation in cerebral cortex of autistic and neurotypical individuals revealed by ultra-deep whole-genome sequencing. Nature neuroscience. 2023.

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21. Saade S, Bockstal-Fieulaine B, Gillespie-Lynch K, Besche-Richard C, Boujut É, Johnson Harrison A, Cappe É. Evaluation of an Autism Training in a Much-Needed Context: The Case of France. Autism in adulthood : challenges and management. 2023; 5(3): 289-300.

BACKGROUND: Autistic people in France have called for community education to reduce autism stigma. As such, training is needed to help university students appreciate autistic peers and autistic people they may work with in their future careers. METHODS: We adapted an autistic-affirming training from a training developed in other cultural contexts and evaluated it with 107 university students in France using a pretest-post-test design. RESULTS: Questionnaire responses suggested that our brief online training helped improve attitudes toward inclusion, autism knowledge, and stigma among future educators and psychologists in France. Participants’ open-ended definitions of autism revealed increased alignment with the neurodiversity movement after training. CONCLUSIONS: Findings suggest that wider-scale autistic-led adaptations of autism trainings like the one described in this report could begin to ameliorate autism stigma in France. WHY IS THIS AN IMPORTANT ISSUE? Autistic people in France have been treated very badly in the past. They have been left out of school and hurt by professionals. They still face stigma. This means they are often misunderstood, made fun of, and excluded. Some are forced to take medications they do not want. Autistic people in France have been trying to help other people in France understand autism. WHAT WAS THE PURPOSE OF THIS STUDY? We wanted to see whether autism training could help university students in France to better understand autistic people. We wanted to see whether our training could help students appreciate autistic people more (or lower stigma). We also wanted to see whether the training could help students understand that it is important to include autistic people in classes with other students at school. WHAT DID THE RESEARCHERS DO? Researchers in France, Lebanon, and the United States modified an autism training that had been used in other countries. The training was autistic affirming, which means it taught people to listen to autistic people and to see their strengths. We translated it into French. We included training topics that French collaborators thought were important. We asked university students in France who were studying education and psychology to do our training online. We also asked them to fill out surveys about autism. WHAT WERE THE RESULTS OF THE STUDY? After doing our training, students knew more about autism than they did before training. Some learned that autism is part of a person for their whole life. They seemed to appreciate autistic people more after training. They also agreed that it is important to include autistic people in school with other students more than they had before. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? This study shows that autistic-affirming training can also help people in France appreciate autistic people. Much autism training only focuses on stigma and knowledge. Our training may also have helped future educators and clinicians understand how important it is to include autistic people in school with other students. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? The students in our study were mostly women. They were all training for jobs where they can help people. We do not know whether our training would help other French people. We also cannot be sure that our training really helped the students who did it. Students may have been dishonest about how they felt about autism. In future studies, people should see whether training changes what people do, not just what they say. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? By teaching students in France about autism, we hope to begin to help make life better for autistic people in France. We hope studies like this will help people to understand autistic people better. We also hope more people conduct trainings like that used in this study around the world to improve understanding and treatment of autistic people. eng.

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22. Stacey R, Cage E. « Simultaneously Vague and Oddly Specific »: Understanding Autistic People’s Experiences of Decision Making and Research Questionnaires. Autism in adulthood : challenges and management. 2023; 5(3): 263-74.

BACKGROUND: Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. In addition, answering questions within a questionnaire involves decision making, which some autistic people have reported finding difficult. Therefore, this exploratory study aimed to enhance our understanding of autistic people’s experiences of decision making, and to analyze their feedback on questionnaire measures to further understand decision making within the research context. METHODS: One hundred seventeen participants completed an online questionnaire. In the questionnaire, they answered an open question about what affected their ability to make decisions. They then completed four questionnaire measures and after each one provided feedback. We used content analysis to categorize participants’ qualitative answers. RESULTS: Participants discussed how their internal state, other people, the quality and quantity of information, pressure on choosing a response, external distractions, and lack of time all affected their decision making. Feedback on the questionnaires highlighted how questions needed context, often questions themselves were unclear and difficult to understand, that there were issues with Likert scales, and how measures could have questionable validity for autistic people. CONCLUSIONS: Autism researchers need to consider how they can make their research as accessible as possible for autistic people. Our study highlights how decision making is not a straight-forward process, and researchers have a role in ensuring they give their participants clear and contextualized information. Involving autistic people in the design of research is a potential way of improving the quality of research. WHY IS THIS AN IMPORTANT ISSUE? Autism researchers often use questionnaires but might not always use well-designed ones. Its important that autistic people feel they can complete questionnaires and provide accurate information about what is important to them. Also, when answering a questionnaire, someone usually must make decisions, for example, about which option best fits their own experiences. But researchers might not consider that making decisions can be difficult for some autistic people. WHAT WAS THE PURPOSE OF THIS STUDY? We wanted to find out what autistic people thought about questionnaires and what things affected their decision making. WHAT DID THE RESEARCHERS DO? We created an online survey, which 117 autistic people completed. We had an open question asking participants what affected their ability to make decisions. Participants then completed four questionnaire measures that other people had created before, which had statements followed by tick boxes on different scales (e.g., strongly agree to strongly disagree). After each of these measures, we asked participants to give open feedback. We then identified patterns in the participants’ responses. WHAT WERE THE RESULTS OF THE STUDY? Participants’ decision making was affected by things such as their mood and energy level, having to consider how their decision affects others, the quality and quantity of information provided, pressure on choosing a response, external distractions (like noise), and having to decide quickly. Participants’ feedback about the questionnaire measures identified potential improvements. There were some positive comments, but participants often said the measures needed more context to explain them or needed to consider the current context (like how a global pandemic might be affecting their answers). They also said some questions were not clear and difficult to understand, the response options needed improving, or the questions were not relevant for autistic people. WHAT DO THESE FINDINGS ADD TO WHAT WAS KNOWN? Our findings show how decision making can be challenging for some autistic people, and this could influence their responses when doing research. Participants’ responses give important information for autism researchers to consider when using questionnaires. Our findings are further evidence that questionnaires should be adapted or new ones created specifically for autistic people. The findings imply that it is important to involve non-academic autistic people in research. WHAT ARE POTENTIAL WEAKNESSES? Most participants were female, White, and from Western countries, which limits how our findings might apply more widely. We asked generally about decision making rather than specifically about the research context, and more in-depth interviews on this topic would be useful. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? The things we have learned from our study can be used by autism researchers to improve their research design. If they make improvements, this means taking part in research will be more enjoyable and straightforward for autistic people. Autism research can potentially improve autistic people’s lives, but we need to make the experience of taking part in research better. eng.

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23. Stewart GR, Leoni M, Charlton RA, Pickard HR, Happé F. A Qualitative Study of Autistic Adults’ Quality of Life During the COVID-19 Pandemic and Lockdowns. Autism in adulthood : challenges and management. 2023; 5(3): 311-24.

BACKGROUND: Autistic people experience higher rates of most mental health conditions and report more difficulties with change than nonautistic people. As such, the periods of national stay-at-home orders (known in the United Kingdom as a « lockdown ») endured since the beginning of the COVID-19 (coronavirus disease 2019) pandemic in March 2020 may have been particularly challenging for autistic people. AIM: This study explored autistic adults’ experience of quality of life and well-being during the start of the COVID-19 pandemic (specifically March to August 2020) using open-text responses from an online survey. METHODS: In total, 79 autistic adults from the United Kingdom (aged 21-75 years) took part. Participants completed an online survey, including open-text questions on how various factors influencing quality of life, such as social interactions, general health, well-being, and sensory experiences, were impacted by the COVID-19 pandemic and the first set of national lockdowns that occurred between March and August 2020. RESULTS: Thematic analysis created four key themes, each illustrated by several subthemes. These four themes explore (1) health, (2) social changes, (3) support provisions, and (4) adopting new routines. Many participants discussed the impact that the COVID-19 pandemic and the first set of national lockdowns had on their health and expressed concerns regarding the transition out of periods of lockdown, including readjusting to new rules, going back to in-person interactions, and reacclimatizing to high-stimulation sensory environments. However, several participants reported positive experiences of the periods of lockdown, such as reduced commuting, more control over sensory environments, and more time to pursue personal interests and self-care. CONCLUSIONS: These findings highlight the importance of giving autistic individuals the support they need to transition back to « normality » as COVID-19 becomes endemic. WHY IS THIS AN IMPORTANT ISSUE? The COVID-19 pandemic and national stay-at-home order (known in the United Kingdom as a “lockdown”) led to severe disruption and change in people’s lives throughout 2020 and early 2021. However, only a few studies have examined the impact of the lockdowns on autistic people’s well-being. WHAT WAS THE PURPOSE OF THIS STUDY? The abrupt changes caused by the COVID-19 pandemic and lockdowns may have had a more detrimental impact on the lives of autistic people compared with others. This study aimed to explore the impact of the pandemic on the lives of autistic people and to provide context and descriptions of their experiences. WHAT DID THE RESEARCHERS DO? We asked autistic adults a range of open-response questions using an online survey in July/August 2020 to understand how they experienced the COVID-19 pandemic and periods of national lockdown. A total of 79 autistic adults from the United Kingdom took part. The questions asked about participants’ health and general well-being, their social lives, and sensory differences before (retrospectively) and during the U.K. national lockdowns that occurred between March and August 2020. WHAT WERE THE RESULTS OF THE STUDY? Overall, most people felt that the pandemic had a negative impact on their lives. Many felt isolated and lonely due to lockdowns, and many expressed feelings of distress and anxiety at the prospect of returning to normality. However, several participants did report positive aspects of the periods of lockdown, such as having more time for personal interests and practicing self-care, and having to deal with less noise and sensory overload. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? To date, much of the research about the impact of the COVID-19 pandemic and lockdowns on autistic peoples’ lives has been quantitative (e.g., using scores on questionnaires). This study uses qualitative data (responses to open-ended questions). This study provides important contextualization of how the pandemic and lockdowns have impacted the lives of autistic people and highlights the need for additional support in the years after the pandemic. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? This study only includes autistic people, so we cannot be sure whether these experiences are unique to autistic people. Additionally, these findings may not be generalizable to the wider autistic population, including those who were unable to participate (e.g., those with learning difficulties). HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? The COVID-19 pandemic and lockdowns are likely to have a long-lasting impact on well-being, which may disproportionately impact autistic people. As such, autistic people may need additional, tailored, support as COVID-19 becomes endemic (i.e., no longer a pandemic but part of everyday life, somewhat like seasonal flu). Additionally, lessons may be learned from the pandemic about how society could be adapted to become more inclusive. eng.

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24. Stogiannos N, Harvey-Lloyd JM, Brammer A, Cleaver K, McNulty JP, Dos Reis CS, Nugent B, Simcock C, O’Regan T, Bowler D, Parveen S, Marais K, Pavlopoulou G, Papadopoulos C, Gaigg SB, Malamateniou C. Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals’ Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey. Autism in adulthood : challenges and management. 2023; 5(3): 248-62.

BACKGROUND: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments, or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed at (i) exploring the MRI scan experiences of autistic adults in the United Kingdom; (ii) identifying barriers and enablers toward successful and safe MRI examinations; (iii) assessing autistic individuals’ satisfaction with MRI service; and (iv) informing future recommendations for practice improvement. METHODS: We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent, and having had an MRI scan in the United Kingdom. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data. RESULTS: We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination, but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training, and confounding societal factors impacted their MRI experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%). CONCLUSION: This study highlighted a lack of effective communication and coordination of care, either between health care services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centered MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals’ needs/preferences, and well-trained staff. WHY IS THIS AN IMPORTANT ISSUE? Magnetic resonance imaging (MRI) is an examination that shows human anatomy and may explain the causes of symptoms. Autistic people may need MRI scans for various reasons, such as low back pain, headaches, accidents, or epilepsy. They have known sensitivities to sound, light, smell, or touch and increased anxiety, so the narrow, loud, isolating, unfamiliar MRI environment may be overwhelming to them. If MRI scans are, for these reasons, inaccessible, many autistic people will have to live with long-standing conditions, pain, or other symptoms, or have delayed treatment, with impact on their quality of life, and life expectancy. WHAT WAS THE PURPOSE OF THIS STUDY? We tried to understand how autistic people perceive MRI examinations, things that work, and the challenges they face. We also asked for their suggestions to improve practice and accessibility. WHAT DID WE DO? We distributed an online questionnaire to autistic adults through social media. We analyzed the data using appropriate statistical and text analysis methods. WHAT WERE THE RESULTS OF THE STUDY? We received 112 responses. Autistic people rated their overall MRI experience as average. Nearly a third (29.6%) reported they were not sent any information before MRI, and only 17.1% reported that radiographers offered some reasonable environmental adjustments. Most participants (68%) reported that radiographers provided detailed information on the day of the scan. Only 23.2% of them disclosed their autistic identity when booking MRIs. We found that quality of communication, physical environment, patient emotions, staff training, stigma, and timely autism diagnosis impacted their MRI experiences. WHAT DO THESE FINDINGS ADD TO WHAT WAS ALREADY KNOWN? Autistic people MRI scan experiences are at the heart of this project. Our project shows that MRI for common symptoms is often inaccessible by autistic people. We should improve the MRI environment, adjust communication format/content for them, and deliver person-centered care in MRI. Health care professionals should receive relevant training, to understand the challenges autistic people might face and better support them in MRI scanning. WHAT ARE POTENTIAL WEAKNESSES IN THE STUDY? The pandemic has impacted participant recruitment; therefore, the results of this sample may not reflect the full impact on the wider autistic population or adequately represent the autistic community, due to small size and including only people who could consent.These results come from different centers, so there is a lot of variation in the use of MRI equipment. HOW WILL THESE FINDINGS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? We outline the main challenges associated with MRI, so autistic adults and their families/carers understand more of what they could expect in future examinations; hopefully, researchers and scanner manufacturers will try to tackle these challenges to make MRI scans truly accessible for autistic people.We shared this knowledge with stakeholders to develop guidelines and started using it in training. We want to ensure that MRI is person-centered and more accessible for autistic patients. eng.

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25. Subramaniam VR, Mu L, Kwon CS. Comparing vagus nerve stimulation and resective surgery outcomes in patients with co-occurring autism and epilepsy to patients with epilepsy alone: A population-based study. Autism research : official journal of the International Society for Autism Research. 2023.

Autism and epilepsy commonly co-occur. Understanding trends in healthcare utilization and in-hospital outcomes amongst patients with autism and epilepsy can help optimize care and reduce costs. We compared hospital outcomes amongst patients with autism and epilepsy to those with epilepsy alone undergoing vagus nerve stimulation (VNS) and resective/disconnective surgery. Differences in discharge status, in-hospital mortality, mean length of stay (LOS), cost and surgical/medical complications were examined. Elective surgical admissions amongst patients with epilepsy alone and co-occurring autism and epilepsy were identified in the 2003-14 National Inpatient Sample (NIS) using previously validated ICD-9-CM case definitions. One patient with co-occurring epilepsy and autism was matched to three epilepsy patients for age, sex and (1) VNS and (2) resective/disconnective surgery. Multinomial logistic regressions were performed to examine the outcomes of interest. Data were collected on: (1) VNS-52 (mean age: 12.79 ± 1.03; 19.27% female) hospital admissions in persons with comorbid autism and epilepsy, 156 (mean age: 12.84 ± 0.71; 19.31% female) matched controls with epilepsy alone; (2) resective/disconnective surgery-113 (mean age: 12.99 ± 0.84; 24.55% female) with comorbid autism and epilepsy, 339 (mean age: 13.37 ± 0.68; 23.86% female) matched controls with epilepsy alone. Compared to patients with epilepsy alone, patients with autism and epilepsy who underwent either surgery showed no differences for in-hospital mortality, discharge status, mean LOS, hospitalization cost, and surgical/medical complications. Our study shows the feasibility and safety of epilepsy VNS and resective surgery in those with ASD do not differ with those with epilepsy alone, contrary to the prevalent safety concerns of epilepsy surgery in patients with ASD.

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26. Symons FJ. On Language and the Context of Discovery for Research in Intellectual and Developmental Disability-An Introduction to a Special Issue on Equity in IDD Research. American journal on intellectual and developmental disabilities. 2023; 128(5): 349.

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27. Sznajder L, Khan M, Tadross M, Ciesiołka A, Nutter C, Taylor K, Pearson C, Sobczak K, Lewis M, Swanson M, Yuen R. Autistic traits in myotonic dystrophy type 1 due to MBNL inhibition and RNA mis-splicing. Research square. 2023.

Tandem repeat expansions are enriched in autism spectrum disorder, including CTG expansion in the DMPK gene that underlines myotonic muscular dystrophy type 1. Although the clinical connection of autism to myotonic dystrophy is corroborated, the molecular links remained unknown. Here, we show a mechanistic path of autism via repeat expansion in myotonic dystrophy. We found that inhibition of muscleblind-like (MBNL) splicing factors by expanded CUG RNAs alerts the splicing of autism-risk genes during brain development especially a class of autism-relevant microexons. To provide in vivo evidence that the CTG expansion and MBNL inhibition axis leads to the presentation of autistic traits, we demonstrate that CTG expansion and MBNL-null mouse models recapitulate autism-relevant mis-splicing profiles and demonstrate social deficits. Our findings indicate that DMPK CTG expansion-associated autism arises from developmental mis-splicing. Understanding this pathomechanistic connection provides an opportunity for greater in-depth investigations of mechanistic threads in autism.

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28. Tahmazian I, Watts A, Chen O, Ferrara HJ, McCrimmon A, Hu B, Chomiak T. A wearable device-enabled therapeutic approach to improve joint attention in autism spectrum disorder: a prospective pilot study. Journal of neural transmission (Vienna, Austria : 1996). 2023.

It has been previously proposed that interventions aimed at integrating and co-activating music processing and motor control systems could have therapeutic potential for priming social skill development in children with autism spectrum disorder (ASD). In this study, we assessed this hypothesis through a wearable sensor platform called Ambulosono (« Ambulo »-walk; « sono »-sound) in which pleasurable children’s musical stimuli are contingently linked to effortful motor action (locomotor step size), thus creating a motivational state proposed to be conducive to joint attention (JA) operation. Five participants were recruited from a community-based partner and were assessed by scoring responses following therapist-directed bids for JA. Multiple assessment sessions through a repeated time-series design were conducted to determine baseline and post-intervention scores. The intervention session consisted of approximately 15 min of Ambulosono exposure. Baseline and post-intervention data were aggregated and analyzed using a linear mixed-effect model. The wearable sensor and wireless headphones of the Ambulosono system were tolerated by the participants, and there were no adverse effects associated with the use of the device. We found an increase in the average responses to bids for JA during the Ambulosono intervention phase compared to baseline across participants. This increase did not appear to result from enhanced general arousal. Our pilot data support feasibility and further testing of Ambulosono as a therapeutic aid for integration into community-based ASD programs to augment shared child-therapist social interactions.

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29. Tan DW. Early-Career Autism Researchers Are Shifting Their Research Directions: Tragedy or Opportunity?. Autism in adulthood : challenges and management. 2023; 5(3): 218-24.

Early-career researchers (ECRs) are among the most creative, talented, and energetic researchers, and they play an important role in knowledge production and pushing scientific boundaries. Recent debates have implied that many early-career autism researchers are compelled to shift their areas of focus within autism research as a consequence of their work being scrutinized by the autistic and autism communities. In this Perspective, I draw on my own experience as an early-career autism researcher having recently pivoted my research focus to become more aligned with community priorities. I reflect on whether these putative shifts in research direction are, indeed, a tragedy, as has previously been suggested, or, in fact, an opportunity for autism researchers. I argue that pivoting in research is a demonstration of science adapting to the ever-evolving needs in society and changes in our understanding of neurodiversity, neurodivergence, and research methods. While disagreements between the autistic, autism, and research communities may well feel uncomfortable, these tensions also present an opportunity for us-as non-autistic autism researchers-to reflect and to act toward building trust with the community. I recommend three areas for reflections: the purpose of our research, our position of power, and the epistemic limits of our academic expertise. I end by encouraging ECRs to consider taking actions, however small, to lead the charge in improving practices in autism research. WHY IS THIS TOPIC IMPORTANT? The autism and autistic communities are increasingly unhappy with the current state of autism research, which have led to tensions between community members and autism researchers. Recent discussions on this topic have mentioned that early-career autism researchers—those who have gotten their PhDs but are still working toward a more stable career—have been negatively affected by community members publicly criticizing their work. According to several recent reports, these public criticisms have made early-career autism researchers feel worried about continuing their work in the same area and are considering doing another research topic. This is an important issue to discuss because such claims are not consistent with what the research shows, my own experiences as well as those of several other autism researchers. I think this discussion should prompt us—autism researchers—to take a step back and reflect on our research practices. WHAT IS THE PURPOSE OF THIS ARTICLE? In this article, I reflect on my own experience as an early-career autism researcher who has recently changed my research topic from trying to understand how autism occurs to trying to understand how society can be more accepting of autistic people. I use my own experience and experiences of other researchers to argue that changes in research directions as a result of community feedback comprise positive progress for autism research. WHAT PERSONAL OR PROFESSIONAL PERSPECTIVES DO THE AUTHOR BRING TO THIS TOPIC? I am a non-autistic early-career researcher who has been working in autism research for over 10 years as a student and postdoctoral researcher. I have recently changed my research topic due to having doubts about the real-world impact of my early work after reflecting on autistic people’s criticisms on my work. These criticisms played an important role in my development as a researcher. WHAT IS ALREADY KNOWN ABOUT THIS TOPIC? Based on previous studies, we know that the autistic and autism communities are dissatisfied with much of the autism research being done. Many community members felt that some autism research is out-of-touch with their everyday experiences. Though it has been suggested that a participatory research approach—meaning involving autistic people throughout the research process—should help address some of these concerns, such an approach is still uncommon. WHAT DOES THE AUTHOR RECOMMEND? I recommend that autism researchers—non-autistic researchers in particular—take this opportunity to reflect on the purpose of one’s research and how it affects the everyday lives of autistic people, our position of power in influencing the way autistic people are being perceived, and the limitations of our academic understanding of autism and autistic people’s experiences. I also encourage early-career autism researchers to consider taking steps, even small steps, to improve the way autism research respects and aligns with the perspectives and priorities of the autism and autistic communities. HOW WILL THESE RECOMMENDATIONS HELP AUTISTIC ADULTS NOW OR IN THE FUTURE? It is my hope that my experiences, reflections, and recommendations will encourage autism researchers to conduct studies that are more in line with the priorities of the autism and autistic communities and are better informed by lived experiences. eng.

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30. Wang Q, Luo S, Xiong D, Xu X, Zhao X, Duan L. Quantitative investigation of the effects of DNA modifications and protein mutations on MeCP2-MBD-DNA interactions. International journal of biological macromolecules. 2023; 247: 125690.

DNA methylation as an important epigenetic marker, has gained attention for the significance of three oxidative modifications (hydroxymethyl-C (hmC), formyl-C (fC), and carboxyl-C (caC)). Mutations occurring in the methyl-CpG-binding domain (MBD) of MeCP2 result in Rett. However, uncertainties persist regarding DNA modification and MBD mutation-induced interaction changes. Here, molecular dynamics simulations were used to investigate the underlying mechanisms behind changes due to different modifications of DNA and MBD mutations. Alanine scanning combined with the interaction entropy method was employed to accurately evaluate the binding free energy. The results show that MBD has the strongest binding ability for mCDNA, followed by caC, hmC, and fCDNA, with the weakest binding ability observed for CDNA. Further analysis revealed that mC modification induces DNA bending, causing residues R91 and R162 closer to the DNA. This proximity enhances van der Waals and electrostatic interactions. Conversely, the caC/hmC and fC modifications lead to two loop regions (near K112 and K130) closer to DNA, respectively. Furthermore, DNA modifications promote the formation of stable hydrogen bond networks, however mutations in the MBD significantly reduce the binding free energy. This study provides detailed insight into the effects of DNA modifications and MBD mutations on binding ability. It emphasizes the necessity for research and development of targeted Rett compounds that induce conformational compatibility between MBD and DNA, enhancing the stability and strength of their interactions.

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31. Watts R, Archibald T, Hembry P, Howard M, Kelly C, Loomes R, Markham L, Moss H, Munuve A, Oros A, Siddall A, Rhind C, Uddin M, Ahmad Z, Bryant-Waugh R, Hübel C. The clinical presentation of avoidant restrictive food intake disorder in children and adolescents is largely independent of sex, autism spectrum disorder and anxiety traits. EClinicalMedicine. 2023; 63: 102190.

BACKGROUND: Avoidant restrictive food intake disorder (ARFID) is a new eating disorder with a heterogeneous clinical presentation. It is unclear which patient characteristics contribute to its heterogeneity. METHODS: To identify these patient characteristics, we performed symptom-level correlation and driver-level regression analyses in our cross-sectional study in up to 261 ARFID patients (51% female; median age = 12.7 years) who were assessed at the Maudsley Centre for Child and Adolescent Eating Disorders, London between November 2019 and July 2022. FINDINGS: Symptoms across the three drivers 1) avoidance based on sensory characteristics of food; 2) apparent lack of interest in eating; and 3) concern about aversive consequences positively correlated with each other. Patients’ anxiety traits showed the greatest positive correlations with symptoms of concern about aversive consequences of eating. Patient sex was not significantly associated with any of the three ARFID drivers. Patients with comorbid autism spectrum disorder (ASD; 28%) showed more food-related sensory sensitivities (RR = 1.26) and greater lack of interest in eating (RR = 1.18) than those of patients without ASD (49%). INTERPRETATION: In our clinical sample, the ARFID drivers occurred together and did not show clinically meaningful differences between the sexes. ASD may accentuate food-related sensory sensitivities and lack of interest, but may not drive a completely different symptom presentation. ARFID is multi-faceted and heterogenous, requiring a comprehensive multidisciplinary assessment to sufficiently understand the drivers of the restrictive eating behaviour. Results need replication in larger samples with more statistical power. FUNDING: None.

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32. Zafarullah M, Li J, Salemi MR, Phinney BS, Durbin-Johnson BP, Hagerman R, Hessl D, Rivera SM, Tassone F. Blood Proteome Profiling Reveals Biomarkers and Pathway Alterations in Fragile X PM at Risk for Developing FXTAS. International journal of molecular sciences. 2023; 24(17).

Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) is a neurodegenerative disorder associated with the FMR1 premutation. Currently, it is not possible to determine when and if individual premutation carriers will develop FXTAS. Thus, with the aim to identify biomarkers for early diagnosis, development, and progression of FXTAS, along with associated dysregulated pathways, we performed blood proteomic profiling of premutation carriers (PM) who, as part of an ongoing longitudinal study, emerged into two distinct groups: those who developed symptoms of FXTAS (converters, CON) over time (at subsequent visits) and those who did not (non-converters, NCON). We compared these groups to age-matched healthy controls (HC). We assessed CGG repeat allele size by Southern blot and PCR analysis. The proteomic profile was obtained by liquid chromatography mass spectrometry (LC-MS/MS). We identified several significantly differentiated proteins between HC and the PM groups at Visit 1 (V1), Visit 2 (V2), and between the visits. We further reported the dysregulated protein pathways, including sphingolipid and amino acid metabolism. Our findings are in agreement with previous studies showing that pathways involved in mitochondrial bioenergetics, as observed in other neurodegenerative disorders, are significantly altered and appear to contribute to the development of FXTAS. Lastly, we compared the blood proteome of the PM who developed FXTAS over time with the CSF proteome of the FXTAS patients recently reported and found eight significantly differentially expressed proteins in common. To our knowledge, this is the first report of longitudinal proteomic profiling and the identification of unique biomarkers and dysregulated protein pathways in FXTAS.

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33. Ziliotto M, Kulmann-Leal B, Kaminski VL, Nunes GT, Riesgo RDS, Roman T, Schuch JB, Chies JAB. HLA-G*14 bp indel variant in autism spectrum disorder in a population from southern Brazil. Journal of neuroimmunology. 2023; 383: 578194.

Altered immune response during pregnancy has been associated with ASD susceptibility. HLA-G is expressed by the trophoblast at the maternal/fetal interface and induces allogenic tolerance toward the fetus. A 14-bp insertion in the HLA-G 3’UTR (rs371194629) was associated with reduced levels of HLA-G. We aimed to assess the influence of the HLA-G*14 bp indel variant in ASD susceptibility and symptomatology in a Brazilian admixed sample. The insertion genotype (14 bp+/14 bp+) was firstly associated with hetero aggression, but statistical significance was lost after correction (p = 0.035, p(corrected) = 0.35). No association between the HLA-G variant and susceptibility to ASD or differential clinical manifestations were observed.

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