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<jats:p> The process of getting an autism diagnosis can be a stressful and uncertain time for families. While the experiences of parents seeking an autism diagnosis for their child have been explored in previous research, the experiences of families with a daughter have been underrepresented. It is likely that their experience is markedly different given that females are often misdiagnosed and/or are diagnosed at a later age. Semi-structured interviews were conducted with six families, and interpretative phenomenological analysis was used along with member checks to derive themes from the participants’ narratives. Three superordinate themes emerged from the analysis: ‘Something’s not right’ consisted of narratives describing the process of getting their daughter diagnosed and ‘So many barriers’ captured the factors that delayed assessment and diagnosis. Finally, the third theme ‘I wanted to just get this process done and dusted’ explored the range of emotions experienced by families during the assessment process. The importance of challenging outdated conceptualisations of autism and providing further training to increase health professionals’ confidence when diagnosing autistic females is emphasised, as well as recognising that families may experience a range of emotions during the assessment and diagnostic process, including positive ones. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Autistic females are often diagnosed later than males and are also more likely to be misdiagnosed with other conditions. Co-occurring conditions may also be diagnosed at the time of the assessment but their autism diagnosis is missed. The majority of research examining the parent experience of obtaining an autism diagnosis for their child has included predominantly or exclusively male children in their samples. This study examines the experiences of parents in obtaining an autism diagnosis for their daughters in Australia through interview data which allowed for an exploration of their lived experiences. Several of the parents reported positive feelings of excitement or curiosity in relation to the assessment process which are emotions that have not been reported in earlier studies. While recent research advances have improved our understanding of gender differences in autistic behaviours, the findings of this study suggest that some practitioners have obsolete knowledge which may lead to misdiagnosis or missed diagnosis in some females. Although the extent that these experiences are representative of parents in the wider community is unknown, the fact that they are still being reported in the present day suggests that a proportion of health professionals continue to practice with outdated conceptualisations of autism. </jats:p></jats:sec>

<jats:p> The breadth of available non-pharmacological interventions for autistic children, with varying evidence for efficacy summarised in multiple systematic reviews, creates challenges for parents, practitioners, and policymakers in navigating the research evidence. In this article, we report the findings of an umbrella review of 58 systematic reviews of non-pharmacological interventions for autistic children (aged 0–12 years). Positive therapeutic effects were identified for Behavioural interventions, Developmental interventions, Naturalistic Developmental Behavioural Interventions, Technology-based interventions, and Cognitive Behaviour Therapy across several child and family outcomes. Positive effects for certain practices within Sensory-based interventions and ‘other’ interventions were limited to select child and family outcomes. Both inconsistent and null intervention effects were found for Treatment and Education of Autistic and related Communication-handicapped Children, and Animal-assisted interventions across outcomes. The possible influence of child (chronological age, core autism characteristics, and related skills) and delivery (agent, mode, format, and amount) characteristics on intervention effects was rarely examined, and inconsistent where reported. Twenty-seven systematic reviews (47%) were rated as ‘high’ quality. Few systematic reviews examined children’s participation and quality of life or adverse effects. The findings highlight the need for individualised evidence-based decision-making when selecting interventions for autistic children. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> What is already known about the topic? The delivery of evidence-based interventions is an important part of the clinical pathway for many autistic children and their families. However, parents, practitioners, and policymakers face challenges making evidence informed decisions, due to the wide variety of interventions available and the large, and often inconsistent, body of evidence regarding their effectiveness. What this paper adds? This is a comprehensive umbrella review, also known as a ‘review of reviews’, which examined the range of interventions available, the evidence for their effectiveness, and whether effects were influenced by factors relating to individual children (e.g. chronological age, core autism characteristics, and related skills) or the ways interventions were delivered (by whom and in what setting, format, mode, and amount). There was evidence for positive therapeutic effects for some, but not all, interventions. No single intervention had a positive effect for all child and family outcomes of interest. The influence of child and delivery characteristics on effects was unclear. Implications for practice, research, and policy The findings provide parents, practitioners, and policymakers with a synthesis of the research evidence to inform decision-making and highlight the importance of individualised approaches in the absence of clear and consistent evidence. The findings also highlight the need to improve consistency and completeness in reporting of research studies, so that the same questions may be answered more comprehensively in the future. </jats:p></jats:sec>

<jats:p> Autistic people are under-represented in university student populations, but their numbers are growing, and the barriers to their inclusion are being recognised. Outside of the student body, autistic people in academia are often overlooked, although this is starting to change with the growth in inclusive autism research. However, they remain absent from the academic literature, despite the evident synergies between autistic strengths and academic careers. This study explored the perceptions of 37 autistic academics from various disciplines: what are the positives of working in academia for autistic people, and what are the negatives? Participants reported many positive aspects of an academic career, including the fit with the strengths, characteristics and motivations of autistic people. However, they also noted barriers and challenges – social, environmental and structural – many of which could be addressed by greater awareness and acceptance of autism. Given the considerable benefits that autistic teachers and researchers bring to higher education, there is a clear need for universities and colleges to implement changes to the physical and social environment to make academia more inclusive. </jats:p><jats:sec><jats:title>Lay Abstract</jats:title><jats:p> Academia appears to provide an ideal career option for autistic people: the opportunity to lock ourselves away in an ivory tower and utilise our extensive knowledge of a very specific topic. We know autistic people are underrepresented in postsecondary education, and there is a growing body of research on how to make universities more inclusive. What is missing from the literature is the voices of autistic people who have survived the university experience and gone on to become university teachers and researchers. Increasing the visibility of autistics in academia, and exploring the barriers and facilitators they experience in an academic career, is important to raise the aspirations of future university students and graduates. This study included 37 autistic academics from various disciplines and countries, exploring their perceptions of the positive and negative aspects of being an autistic in academia. </jats:p></jats:sec>

<jats:p> Various aspects of parent responsiveness are associated with child outcomes, such as play, language, and social development. However, behavioral coding methods used to measure parent responsiveness vary widely, making comparison of results across studies difficult. The purpose of this scoping review was to summarize current behavioral coding methods used in measuring parent responsiveness to children with autism or elevated likelihood of autism, synthesize the reported metrics used, and highlight the strengths and weaknesses in the reporting standards of available literature. A total of 101 articles met criteria for the review and were analyzed for metrics in demographics, coding system development and accessibility, characteristics of measured responsiveness, reliability, and validity. Results revealed variations in observational procedures, forms of measurement, and specific aspects of responsiveness measured. Details necessary for study replication or extension often were missing, such as parent demographics, clear definitions of parent responsiveness, and coder training procedures. The scoping review results reflect the wide variety of behavioral coding systems used and the inconsistent reporting in published literature on this topic. A case for a best practice model for behavioral coding metrics and reporting standards within parent responsiveness is presented in the discussion. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> The topic of how parents react (e.g., how they talk and act) to their child with autism or elevated likelihood of autism, often called parent responsiveness, has been studied by researchers for over 50 years. Many methods for measuring behaviors around parent responsiveness have been created depending on what researchers were interested in discovering. For example, some include only the behaviors that the parent does/says in reacting to something the child does/says. Other systems look at all behaviors in a period of time between child and parent (e.g., who talked/acted first, how much the child or parent said/did). The purpose of this article was to provide a summary of how and what researchers looked at around parent responsiveness, describe the strengths and barriers of these approaches, and suggest a “best practices” method of looking at parent responsiveness. The model suggested could make it more possible to look across studies to compare study methods and results. The model could be used in the future by researchers, clinicians, and policymakers to provide more effective services to children and their families. </jats:p></jats:sec>

<jats:p> Despite emerging awareness of gender diversity in the autistic population, our understanding of autism remains limited to cisgender boys and men. We conducted a scoping review to better understand how structural language skills (i.e. syntax, semantics, narrative) differ across sex/gender within autism, and how gender diversity is incorporated in such research. Five research databases were searched for articles that have autistic participants who were not all male, present quantitative results separated by sex/gender, pertain to structural language, and were published between 2000 and 2021. Twenty-four articles met inclusion criteria. One article demonstrated awareness of gender diversity beyond the binary (i.e. girl, boy). Overall, autistic girls performed better than autistic boys but worse than nonautistic girls. Autistic girls are less likely to share the same quality and magnitude of structural language difficulties as autistic boys, which may contribute to their underdiagnosis. Comparing autistic girls to nonautistic girls is more likely to reveal areas of linguistic difference and potential intervention targets. This research provides further support for developing sex/gender-aware diagnostic and support measures for autism. Broader awareness of gender diversity, as both a concept and a prevalent feature of the autistic population, is essential for researchers to continue learning about sex/gender interactions in autism. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Research about autism is mostly about boys and men, even though many autistic people are girls, women, and transgender/nonbinary. We wanted to learn more about how gender interacts with language skills in autistic people, so we reviewed existing research articles on this topic. We also wanted to know how this previous research talked about gender. Included articles had to measure language skills for autistic people of different genders. They also had to be published between 2000 and 2021. Twenty-four articles met these requirements. We found that autistic girls showed better language skills than autistic boys but worse skills than nonautistic girls. This may be one reason that autistic girls are underdiagnosed compared to autistic boys. If we compare autistic girls to nonautistic girls instead, we can see more language differences and possible areas to target in interventions. This study supports the need to create diagnostic and support measures for autism that take gender into account. Also, only one article mentioned autistic people who are transgender or nonbinary. Researchers who want to learn more about gender and autism need to understand gender diversity and recognize that many autistic people are transgender or nonbinary. </jats:p></jats:sec>

<jats:p> Autistic children experience a high rate of sleep problems, which have been associated with maternal mental health difficulties. However, the directionality of these relationships has received little attention. The extent to which children’s sleep problems influence maternal mental health difficulties and vice versa remains unclear. The aim of this study was to examine the bidirectional relationships between the sleep problems of autistic children and maternal mental health difficulties over 12 years. Six biennial waves of longitudinal data from when children were 4 to 5 years old were drawn from the Longitudinal Study of Australian Children. The sample comprised 397 child–mother dyads. Maternal mental health was assessed with the Kessler-6, while sleep problems were assessed through a series of questions relating to common sleep problems in children. The results demonstrated significant bidirectional effects between maternal mental health and child sleep problems at key developmental transition time points. Specifically, when children transitioned from preschool to primary school and again when the children transitioned from primary school to high school. These findings highlight the need for increased support for both the child and mother at these critical time points to reduce the negative impact of maternal psychological distress on child sleep problems and vice versa. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Autistic children experience increased the rates of sleep problems. These sleep problems have been associated with mother’s mental health symptoms. However, the direction of these relationships is not well understood. This study investigated the relationships between autistic children’s sleep problems and mothers’ mental health over a 12-year period using data collected as part of the Longitudinal Study of Australian Children. Data from 397 autistic children and their mothers were included in this study. Mothers completed a questionnaire about their own mental health and common childhood sleep problems at four time points from 4–5 years to 14–15 years. The results showed important relationships between mothers’ mental health symptoms and child sleep problems at two time points. Specifically, (1) mothers’ mental health symptoms when the child was aged 4 to 5 years predicted child sleep problems at age 6 to 7 years; and (2) child sleep problems at age 12–13 years predicted mothers’ mental health symptoms when the child was aged 14 to 15 years. Interestingly, these significant relationships also coincide with key developmental transition time points, when the child is transitioning in and out of primary school. These findings highlight the need for increased support for both the child and mother at these times to optimise outcomes for both. </jats:p></jats:sec>

<jats:p> Parents of autistic children experience more parenting stress and are at increased risk for poor mental and physical health compared with parents of neurotypical children; however, not all parents are distressed. The present study used a person-centered analytic approach to identify profiles of the parenting experience in a sample of 183 mothers and fathers of an autistic child (5–12 years old) and to examine associations between profile membership and child outcomes. Results indicated three profiles for mothers: Adaptive (41.1%; high authoritative parenting, lowest stress, and highest competence), Average (42.1%; sample average of all parenting indicators), and Distressed (16.8%; high stress, low competence, maladaptive parenting strategies). Fathers were classified into four profiles: Adaptive (33.3%), Average (37.7%), Distressed—Permissive (15.3%; high stress, low competence, permissive parenting strategies), and Distressed—Authoritarian (13.6%; some stress, lowest competence, authoritarian parenting strategies). The profiles differed on child internalizing and externalizing symptoms and autism symptom severity. Comparative analysis also revealed that children did better when at least one parent was included in the Adaptive group. Implications of these findings are discussed and include fostering empowering messages to parents as well as providing useful new insight in the context of family-focused interventions. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Research shows that parents of autistic children, on average, are stressed; however, there is likely an array of factors that characterize the parenting experience in the context of autism other than stress. Understanding the diversity in the parenting experiences of both mothers and fathers of autistic children is important in the development of family-based intervention. A total of 188 co-habiting couples with an autistic child described their parenting experiences using a series of questionnaires examining their feelings of stress, parenting competence, and parenting attitudes and behaviors. We then sorted responses into profiles—three for mothers and four for fathers. We found that children of parents who reported the least amount of stress, highest feeling of competence, and use of responsive and directive parenting strategies (the Adaptive profile) had children with the least severe behavioral problems and autism symptoms. It was not necessary for both parents to be in the Adaptive category for child emotional and behavioral problems to less severe. We found that children did just as well when one parent was Adaptive compared with when both parents fell into this category. </jats:p></jats:sec>

<jats:p> Many autistics report being distressed by eye contact, but eye-tracking studies suggest that eye contact is associated with hypo-arousal rather than hyper-arousal in autism. Within a live face-to-face paradigm combining a wearable eye-tracker with electrodermal activity sensors, 80 adults (40 autistics) defined words in front of an experimenter either staring at their eyes (direct gaze condition) or looking elsewhere (averted gaze condition). Autistics did not differ from neurotypicals in their eye behaviours nor their skin conductance responses. Autistics did not appear distressed when they were looking at the experimenter’s eyes in the direct gaze condition. However, neurotypicals, compared to autistics, might experience more stress when looking at the experimenter in the averted gaze condition, even after controlling for social anxiety and alexithymia. In comparison to autistics, neurotypicals might be hyper-aroused when they look at someone avoiding eye contact. Based on a bidirectional perspective on interactional difficulties in autism, we speculate that the neurotypicals’ distress when their attempts to eye contact are not reciprocated could make their behaviour insistent, which, in turn, could make the autistics uncomfortable. In our study, participants’ partner remained passive, displaying no specific reaction when a mutual gaze was shared or not. Future studies should test different partner reactions to gaze in various social contexts. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> What is already known about the topic? Autistics are usually reported to share less eye contact than neurotypicals with their interlocutors. However, the reason why autistics might pay less attention to eyes looking at them is still unknown: some autistics express being hyper-aroused by this eye contact, while some eye-tracking studies suggest that eye contact is associated with hypo-arousal in autism. What this paper adds? This study is based on a highly controlled live face-to-face paradigm, combining a wearable eye-tracker (to study eye behaviours) with electrodermal activity sensors (to assess potential stress). We draw a nuanced picture of social attention in autism, as our autistic participants did not differ from our neurotypical group in their eye behaviours nor their skin conductance responses. However, we found that neurotypicals, compared to autistics, seemed to be much more distressed when their interlocutor did not gaze at them during the experiment. Implications for practice, research or policy: Our study encourages to consider social interaction difficulties in autism as a relational issue, instead as an individual deficit. This step might be first taken in research, by implementing paradigms sensitive to the experimenter’s role and attitude. </jats:p></jats:sec>

<jats:p> Research shows significant rates of depressive symptoms in people with autistic spectrum disorder and intellectual disabilities. Finding factors related to the development of depression in autism spectrum disorder and intellectual disability is necessary. Emotion regulation is associated with depression in autism spectrum disorder and intellectual disability. The role of the intellectual disability in this relationship is not clear, so it is necessary to clarify it. One hundred twenty-one adults (M = 35.46 years, SD = 9.46) with autism spectrum disorder and intellectual disabilities were evaluated to verify moderating role of intellectual disability and mediating role of emotion regulation. A moderated mediation analysis supported the moderated role of mild intellectual disability in the relationship mediated by emotional dysregulation between autism spectrum disorder and depression symptoms. These findings suggest that interventions designed to prevent or reduce depressive symptoms in people with autism spectrum disorder and mild intellectual disability should include among their goals emotional regulation. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Many people with autism and intellectual disability have significant levels of depressive symptoms. However, this relationship is not clear. For this reason, knowing the factors that are associated with having depression in autism and intellectual disability is important. Emotion regulation is associated with depression in autism spectrum disorder and intellectual disability. After evaluating a group of people with autism and intellectual disability, we found that people with mild intellectual disability have problems regulating their emotions which lead them to develop depressive symptoms. These findings suggest that interventions designed to prevent or reduce depressive symptoms in people with autism spectrum disorder and mild intellectual disability should include among their goals emotional regulation. </jats:p></jats:sec>

<jats:p> Few instruments screen for autism spectrum disorder (ASD) among kindergarteners and older children. The Autism Screen for Kids and Youth (ASKY) is a 30-item parental questionnaire for 4- to 18-year-old children and adolescents available in Arabic, English, and Hebrew. We examined the sensitivity, specificity, and temporal stability of the Hebrew ASKY’s categorizations (“probable ASD” versus “probable non-ASD”) of 167 autistic and non-autistic 4- to 18-year olds. Algorithm-based categorization following The Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition ( DSM-5) rules demonstrated 91.8% sensitivity, 71.7% specificity, and excellent test–retest reliability (κ = 0.783, 95% confidence interval (CI) = 0.583–0.983, p &lt; 0.001). Total score-based categorization using a cutoff of 9 demonstrated high receiver operating characteristics area under the curve (AUC = 0.874) and high sensitivity (93.4%), specificity (78.3%), internal consistency (Cronbach’s α = 0.954), and test–retest reliability (κ<jats:sub>scores</jats:sub> = 0.674, κ<jats:sub>instrument</jats:sub> = 0.783). Discussing both categorization approaches, we show that the ASKY is a promising instrument for ASD screening of older children. </jats:p><jats:sec><jats:title>Lay Abstract</jats:title><jats:p> It is important that autistic children be diagnosed as early as possible so their needs can be met and their families can gain important insights into their behavior and interact with them appropriately. However, very few autism screening instruments are appropriate for children who have outgrown early childhood. The Autism Screen for Kids and Youth (ASKY) presents parents of children aged 4–18 years with 30 items that relate to autistic behaviors as defined by the current clinical diagnostic criteria for autism spectrum disorder ( DSM-5 ASD). We evaluated the Hebrew instrument’s performance on 167 autistic and non-autistic children and adolescents. We found that the ASKY algorithm correctly identified 92% of the autistic individuals as “probable ASD” and correctly identified 72% of the non-autistic individuals as “probable non-ASD,” with these classifications showing excellent stability over time. Using total questionnaire score instead of the algorithm improved the ASKY’s ability to correctly identify autistic individuals as “probable ASD” and non-autistic individuals as “probable non-ASD” to 93% and 78%, respectively. Overall, the ASKY is a promising instrument for ASD screening of older children. </jats:p></jats:sec>