Autism, Ahead of Print.
Autistic people are at elevated risk of mental health conditions and experience significant barriers to effective support. While adaptations to therapy for autistic people have been proposed by clinicians, there is limited research on how helpful autistic people themselves rate these. We aimed to address this gap. Participants were 130 autistic adults aged 18 to 64 years (85.4% female) who completed an online survey of the helpfulness of 55 therapy adaptations. Overall, we found positive ratings of helpfulness for approximately half of the adaptations. However, significant variability was found at an individual level with most adaptations rated from not helpful through to extremely helpful. Neurodiversity-affirming adaptations were rated highest overall. Participants shared additional adaptations including general good practice, financial, modality, neurodiversity-affirming practices, practical, sensory/environmental, structure, and therapy style/techniques. Findings highlight similarities and differences between clinician and autistic people’s perspectives, underscoring the need to include autistic people. Limitations of the restricted sample and generalizability are acknowledged. Future research including more diverse samples would be of value to expand on this research. The need to understand general preferences of autistic people and to individualize to the specific client is underscored by findings to begin bridging the mental health support gap for autistic people.Lay AbstractAutistic people experience more mental health conditions like depression or anxiety than non-autistic people. They are also more likely to experience difficulties in accessing mental health supports Clinicians have published suggestions on how to improve therapy for autistic people. However, whether these ways to adapt (i.e. adaptations) therapy for autistic people are seen as helpful by autistic people themselves has not been investigated. We recruited 130 autistic adults to complete an online survey. They rated 55 adaptations to therapy from “Not at all helpful” to “Extremely helpful.” We also asked for ideas of additional adaptations. Adaptations classified as neurodiversity affirming (e.g. having a therapist that embraces differences in brains and provides support to affirm neurodivergent identity) were rated highest. Approximately half of adaptations were rated positively at a group level. However, for almost every adaptation at least one person rated it as not at all helpful and at least one rated it as extremely helpful. Additional adaptations were around general good practice, financial cost, neurodiversity-affirming practices, practical, sensory/environmental, structure, and therapy style/techniques. Our findings add how helpful autistic people themselves rate adaptations to therapy and similarities and differences to clinicians. This is important to consider how these perspectives can differ. Findings also identify additional suggestions that clinicians could use in their practice and ideas for future research. Findings can help autistic adults in advocating for adaptations to therapy that address their needs by providing a list of possible adaptations. Furthermore, findings may help clinicians to better support their autistic clients.

Autism, Ahead of Print.
Autistic adults have reported experiencing discrimination across settings. Nonetheless, population-based research examining the prevalence of discrimination against autistic individuals has been more limited. Therefore, this study aimed to examine the prevalence of types of discrimination (i.e., due to race or ethnicity, due to sexual orientation or gender identity, and due to health condition or disability) experienced by autistic youth (n = 2339) compared to youth with other neurodevelopmental diagnoses (i.e. attention-deficit/hyperactivity disorder, learning disability, and speech or other language disorder; n = 10,325) and neurotypical youth (n = 44,781) 6–17 years of age utilizing a large, population-based sample. Data for this study were acquired from the 2021–2022 National Survey of Children’s Health, a nationally distributed caregiver-report questionnaire. Results found that the prevalence of discrimination due to race or ethnicity and sexual orientation or gender identity was higher among autistic youth than neurotypical youth. Notably, results also found that discrimination due to health condition or disability was far more prevalent among autistic youth than neurotypical youth and youth with other neurodevelopmental diagnoses. Findings highlight the increased prevalence of discrimination experienced by autistic youth and should prompt researchers, policymakers, and vested community members to action to address this problem.Lay abstractAutistic individuals have described facing unfair or discriminatory treatment across settings, such as in school and at work. However, there have been few studies examining how widespread or prevalent discrimination is against autistic individuals. We aimed to fill that gap by examining how prevalent or common it is for autistic youth to experience discrimination based on race or ethnicity, sexual orientation or gender identity, and health condition or disability. We compared rates of discrimination against autistic youth to youth without developmental differences/diagnoses and youth with other developmental differences (i.e. youth diagnosed with attention-deficit/hyperactivity disorder [ADHD], learning disability, and speech/language disorders). We analyzed data from the 2021–2022 National Survey of Children’s Health, which is a nationwide survey on which parents report about aspects of their children’s lives. We found that autistic youth experience higher rates of discrimination based on race or ethnicity and sexual orientation or gender identity compared to youth who are typically developing and do not have a diagnosis (such as a speech or language disorder). Importantly, they also face significantly more discrimination due to their disability than youth with other diagnoses, such as ADHD, and youth without a developmental diagnosis. These results show that autistic youth are at risk for experiencing discriminatory treatment. Our study should motivate researchers, policymakers, and community members to address this critical issue.

Autism, Ahead of Print.
Difficulties regulating emotions have been coined as inherent to autism, possibly even presenting a core difficulty of autism. While several models of emotion regulation have been proposed in the past, in this targeted review article, we aim to map emotion regulation difficulties in autistic individuals within the framework of the extended process model of emotion regulation. This model can be considered the most comprehensive one currently incorporating not only different emotion regulation strategy groups but also different stages and processes involved in successful self-focused emotion regulation. Within this model, we will identify areas and domains as specifically impacted by autistic individuals. We will also outline gaps in the literature and provide suggestions for future research that can help deepen our understanding of the emotion regulation processes of autistic individuals. The ultimate goal is to develop specific support programs that address specific emotion regulation mechanisms, providing a much more individualized support approach.Lay abstractWhat do we already know about emotion regulation in autism?We know that many autistic children, youth, and adults experience difficulties regulating emotions. Existing research has focused mainly on the differences in emotion regulation capabilities between autistic and non-autistic individuals, the relationships between autistic traits and emotion regulation, and how emotion regulation relates to other outcomes, such as social skills and mental health.What does this paper add?We want to take a new approach to review the existing emotion regulation research through the lens of a specific theoretical model: the extended process model of emotion regulation. Professor James Gross developed this model. It consists of four emotion regulation phases: identification, selection, implementation, and monitoring.Our review revealed specific areas within these emotion regulation phases that could significantly impact the emotion regulation experiences of autistic individuals. We also outline the gaps in the research and propose avenues for future investigation.Implications for practiceBy deepening our understanding of emotion regulation in autistic individuals through the proposed future research, researchers and clinicians can pave the way for the development of tailored support programs. These programs will directly target specific emotion regulation mechanisms, offering a much-needed individualized support approach.

Autism, Ahead of Print.
Genetic tests, such as Fragile X and Chromosomal Microarray, are recommended as a standard of care during the evaluation of autism spectrum disorder (ASD) and other neurodevelopmental disorders. However, previous research demonstrates low rates of genetic testing. This study aimed to identify the rates of genetic testing and patient demographic factors that may be associated by conducting a retrospective chart review of 7539 electronic health records of patients who were evaluated for ASD or other neurodevelopmental disorders within a university healthcare network. Researchers created a database that listed patient demographics (race, gender, insurance, zip code), records of ordered but not completed tests, genetic test results and reasons for declining genetic tests (if noted), and other known barriers to genetic testing. Statistical analyses were conducted to determine associations between genetic testing rates and sociodemographic factors. 30.57% of patients received at least one indicated genetic test, while 11.31% received recommended concordant genetic testing. Findings suggest that while gender did not impact whether a patient received at least one genetic test, race and insurance did. Our review demonstrates that genetic testing is not sufficiently offered by physicians, and there are multiple barriers preventing patients from receiving genetic testing, which must be further investigated.Lay abstractGenetic testing is recommended by various professional organizations as part of clinical guidelines during the evaluation of autism spectrum disorder (ASD) and other neurodevelopmental disorders. However, previous studies demonstrate that rates of genetic testing are low. This study aimed to identify the rates of genetic testing within a large university healthcare network and factors that may be associated with higher or lower rates. Researchers reviewed over 7500 electronic health records of patients who were evaluated for ASD or other neurodevelopmental disorders. Some factors that were recorded include patient demographics (race, gender, insurance, zip code), ordered but not completed tests, genetic test results and reasons for declining genetic tests if noted, and other known barriers to genetic testing such as blood draws and specialties of providers seen by patients. Statistical analysis was conducted to determine associations between rates of genetic testing and different factors recorded in our database. Our results demonstrate that less than half of patients received at least one indicated genetic test, while a smaller percentage received recommended genetic tests. While sex assigned at birth and gender did not impact whether a patient received at least one indicated genetic test, race and insurance did. Our review reveals that genetic testing is not sufficiently offered by physicians, and we have identified multiple obstacles that prevent patients from receiving genetic testing which must be further investigated.

Autism, Ahead of Print.
The study was designed to review autism-associated policies, describe policy characteristics, and determine potential policy gaps compared with the recommendations set by the World Health Organization. Autism-associated policies in 15 government agencies and public institutions were thoroughly searched on ministry websites up to December 2022, where 81 of 2504 were retained. And 42 of the 81 policies were issued in 2021 and 2022. Twelve of the 15 included ministries were involved in policymaking, yet fewer than one third of the policy documents were jointly issued by multiple ministries, which are crucial for the effective implementation of autism-associated policies. Compared with the World Health Organization recommendations (the Comprehensive Mental Health Action Plan 2013–2030 and the Six Building Blocks of Health System), several areas showed a strong policy commitment, including leadership and governance, service delivery, and access to medicines and facility. Several potential gaps remained, including a relative lack of emphasis on health information and the health workforce, and insufficient attention to the community. Despite these potential gaps, encouragingly, the nation has increasingly focused on autism groups. This study can provide a basis for future policymaking to provide more comprehensive and better services for individuals with autism.Lay abstractPolicies have been found to play a crucial role in supporting the health and well-being of individuals with autism. Yet, relatively few policy reviews are related to autism, and the current level of autism-associated policies and potential gaps in comparison with the World Health Organization recommendations remain unclear. Our study reviewed autism-associated policies, described policy characteristics, and determined potential policy gaps in mainland China. We conducted a comprehensive search of autism-associated policies from 15 websites of government agencies and public institutions up to December 2022, where 81 of 2504 were retained. We found that 42 of the 81 policies were issued in 2021 and 2022. Twelve of the 15 included ministries were involved in policymaking and fewer than one third of the policy documents were issued by two or more ministries. With respect to recommendations proposed by the World Health Organization (the Comprehensive Mental Health Action Plan 2013–2030 and the Six Building Blocks of Health System), several areas received extensive national attention, including leadership and governance, service delivery, and access to medicines and facility, while there was limited policy attention on the other components. Despite these potential gaps, encouragingly, the nation has increasingly focused on autism groups. This study can provide a basis for future policymaking to provide more comprehensive and better services for individuals with autism.

Autism, Ahead of Print.
Sensorimotor difficulties are common in children with autism spectrum disorder, and it has been suggested that motor planning problems underlie their atypical movements. At early school-age, motor planning development typically involves changes in visuomotor integration, a function known to be affected in autism spectrum disorder. However, there is a lack of detailed characterization of typical motor planning development during this stage, and how motor planning develops in children with autism spectrum disorder is largely unknown. This longitudinal kinematic study examined goal-directed sequential manual movements in children with autism spectrum disorder and in typically developing children across ages 7, 8, and 9 years. We manipulated goal-difficulty and availability of initial visual information to investigate visuomotor integration and chaining of subparts during movement performance. The results revealed emerging group differences at older age, suggesting atypical motor planning development in children with autism spectrum disorder. Notably, unlike the typically developing group, availability of initial visual information did not facilitate motor planning for the autism spectrum disorder group. The results show that motor planning differences in autism spectrum disorder appear related to atypical visuomotor integration and global processing of sensorimotor information. The findings also emphasize the importance of considering developmental aspects in research and practice related to motor problems in children with autism spectrum disorder.Lay abstractMany children with autism struggle with movement difficulties, yet the causes of these difficulties remain unclear. One possible explanation is atypical motor planning and integration of visual and motoric information. Before performing a goal-directed movement, the brain creates a prediction of the movement based on visual and sensory information and previous experience, forming a “blueprint” of the motor steps needed to achieve the goal. This process is called motor planning. During movement, adjustments to the plan can be made through feedback mechanisms. This longitudinal study aimed to examine the development of motor planning in children with autism and typically developing children over early school-age (7–9 years). The children performed a sequential manual peg-rotation task, which involved grasping, rotating, and placing a peg, while detailed measures of movement were collected. Task end-goal difficulty varied, and the goal was either initially occluded or fully visible. The results revealed that children with autism showed atypical motor planning development compared with typically developing peers, and these differences became more pronounced as the children grew older. As the typically developing children matured, they appeared to rely more on initial visual information, which assisted them in motor planning. However, this facilitation did not occur for children with autism. These findings suggest that the differences in motor planning seen in children with autism may be linked to atypical visuomotor integration, highlighting the need for individualized interventions. Furthermore, it is crucial to consider developmental aspects to fully understand motor planning in children with autism.

Autism, Ahead of Print.
Enrollment of autistic children in general schools has increased significantly in the past decade. However, having access to school does not mean being included in school. Autistic individuals’ perspectives regarding their general school experience are limited, with most research focusing on the middle-school stage. This study examines the retrospective experiences of 10 autistic individuals, aged 19–25 years, who attended general schools from elementary through high school. Using semi-structured interviews and the pictorial ‘Blob Tree’ technique as a visual method to elicit self-narratives, the research revealed recurring themes associated with each educational level. Elementary school was marked by feelings of difference and ambiguity. Middle school was characterised by the impact of the autism diagnosis and emotions of instability. It was found, however, that high school represented a turning point, marked by increased self-assurance, acceptance of their autism and a sense of fulfilment. These findings underscore the importance of offering autistic individuals opportunities to share their narratives and to provide insights into their longitudinal experience in general schools. This emphasises the developmental journey of these students, highlighting the challenges they face at each stage and the growing need for increased inclusivity in general schools to better support autistic students.Lay abstractIn the past decade, autistic children have increasingly enrolled in general schools worldwide. However, most insights into their educational experiences come from educators and parents. There is a gap in understanding autistic children’s perspectives on their educational experiences. The limited evidence from autistic children primarily focuses on middle school and reveals complex feelings of loneliness, anxiety and being misunderstood by teachers and peers. Moreover, research to date has not examined the full-time period of general education, which is needed to understand the cumulative developmental trajectory from elementary through high school. To address these gaps, this study investigated the lived experiences of 10 autistic individuals (ages 19–25 years) who had completed their entire school journey in general education settings. This study utilised in-depth interviews and a visual technique called the ‘Blob Tree’ to elicit their stories. The findings indicated that during primary school, participants felt overwhelmed and confused by the school environment. The transition to middle school, where they received an autism diagnosis, marked a period of significant instability, social insecurity and loneliness. Interestingly, the participants gained confidence during high school, accepted their autism and developed a more positive self-image. These findings emphasise the importance of learning the longitudinal self-perspective of autistic individuals through creative methods like the ‘Blob Tree’ technique. Furthermore, the study highlights the crucial role of effective support services during school transitions, particularly from experts in inclusive education. It underscores the need to create environments within general schools that are more inclusive to support autistic students better.

Autism, Ahead of Print.
This study aimed to investigate the feasibility, acceptability, and preliminary effects of an acceptance and commitment therapy (ACT)-based parenting program for parents of autistic children. A pilot randomized controlled trial (RCT) was conducted, with 40 parents randomly assigned to either the eight-session ACT-based parenting program or usual care. Feasibility was assessed by the rates of recruitment, attritions, and adherence to the intervention. Acceptability was evaluated through participant satisfaction surveys and semi-structured group interviews. Intervention feasibility was established with very satisfactory recruitment, attrition, and intervention completion rates. Both participant satisfaction survey and qualitative interviews suggested that the intervention was acceptable and beneficial for parents of autistic children. Compared to the usual-care-only group, participants in the ACT-based parenting program showed significant improvements in parental stress, depressive symptoms, anxiety symptoms, psychological flexibility, self-efficacy, and reductions in emotional and behavioral problems in their children at the immediate post-intervention assessment. These findings support the feasibility, acceptability, and preliminary effectiveness of the ACT-based parenting program for parents of autistic children. Future larger-scale RCTs can be conducted with longer-term follow-ups and more comprehensive assessment of its effectiveness for family caregivers of diverse groups of autistic children and/or other neurodevelopmental conditions.Lay abstractThis study aimed to examine whether an acceptance and commitment therapy (ACT)-based parenting program, incorporating topics of emotional and stress management, parenting skills training, autism-related education, and self-care learning, could be successfully implemented, well-received, and beneficial for parents of children with autism. We randomly assigned 40 parents to either participate in the eight-session ACT-based parenting program or receive usual care only. The program was found to be feasible, with many parents willing to participate and complete the sessions. The parents also reported high satisfaction with the program and found it beneficial, according to satisfaction surveys and interviews. The results showed that parents who participated in the ACT-based parenting program had significant improvements in several outcomes compared to parents in usual-care-only group, including reduced parenting stress, decreased depressive and anxiety symptoms, and increased confident in their parenting abilities. Their autistic children showed fewer emotional and behavioral problems after the intervention. Based on these findings, we conclude that the ACT-based parenting program is feasible and acceptable and has promising effects for parents of autistic children. In the future, larger studies should be conducted to further explore its effectiveness for different groups of parents caring for children with autism or other neurodevelopmental conditions.

Autism, Ahead of Print.