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This study investigated parental beliefs about the etiology, diagnosis, and treatment of autism spectrum disorders. Sixty-two families of affected children completed a questionnaire asking when the parent first noticed developmental or behavioral problems, when they were told the diagnosis, how confident they were about the ability of their child's physician to recognize autism, whether they believed anything specific might have caused their child's autism, and what medications and complementary or alternative therapies they had tried. Two-thirds of parents suspected a specific cause, and three-quarters questioned their physician's ability. Parents who perceived a greater delay in diagnosis or who had tried more different therapies both tended to have less confidence in their physician (p = 0.20 and p = 0.07, respectively). Physicians should inquire about parental beliefs concerning etiology, learn what treatments the children are receiving, perform screening at the 18 month visit, and make referrals for further evaluation as soon as a child begins to exhibit signs suggestive of autism. (Contains 2 tables and 1 figure.)

Parents of children with pervasive developmental disorders (n = 494) were surveyed to determine their level of satisfaction with the process of getting an autism spectrum diagnosis. Participants in this web-based study (mean age = 37.8 years) came from five countries and reported on children with an average age of 8.3 years (range = 1.7 to 22.1). All children had a diagnosis of either autism (59.9%), Asperger syndrome (23.5%), or PDD-NOS (16.6%). Higher levels of parental education and income were associated with earlier diagnosis and greater satisfaction with the diagnostic process. Parents were more satisfied with the diagnostic process when they saw fewer professionals to get the diagnosis and when the children received the diagnoses at younger ages. (Contains 2 tables, 1 figure, and 3 notes.)

The Childhood Asperger Syndrome Test (CAST) is a 37-item parental self-completion questionnaire to screen for autism spectrum conditions in research. Good test accuracy was demonstrated in studies with primary school aged children in mainstream schools. The aim of this study was to investigate the test-retest reliability of the CAST. Parents of 1000 children in years 1-6 in five mainstream primary schools in Cambridgeshire received the CAST. A second identical questionnaire was posted to respondents after approximately 2 weeks. Both mailings generated 136 responses. Agreement above and below a screening cut-point of 15 was investigated. The kappa statistic for agreement (less than 15 versus greater than or equal to 15) was 0.70, and 97 percent (95 percent CI: 93-99 percent) of children did not move across the cut-point of 15. The correlation between the two test scores was 0.83 (Spearman's rho). The CAST has shown good test-retest reliability, and now requires further investigation in a high-scoring sample. (Contains 5 tables, 2 figures, and 1 note.)

Some children with autism and learning disabilities also have aberrant behaviours that are difficult to regulate and stressful for both the child and family members. This case study concerns experiences of 10 parents from five families before and 2 years after entrusting their 10- to 11-year-old child with autism to a group home. Hermeneutic phenomenological analysis of narrative interviews with the parents before the child's moving showed them experiencing grief and sorrow, total exhaustion because of inability to regulate their child's behaviours, social isolation, and negative effects on the child's siblings, but experiencing themselves as more sympathetic than previously towards other people with problems. Two years later they experienced relief for the family due to the group home arrangement and the child's improvement, but with an ethical dilemma which made them feel guilty, despite increased hope for the future. Some also felt unhappy with the staff situation at the group home.

Social interaction and understanding in autistic spectrum disorder (ASD) are key areas of concern to practitioners and researchers alike. However, there is a relative lack of information about the skills and competencies of children and young people with ASD who access ordinary community facilities including mainstream education. In particular, contributions by parents and their children have been under-utilized. Using two structured questionnaires, 19 children with ASD reported difficulties with social skills including social engagement and temper management and also reported difficulties with social competence, affecting both friendships and peer relationships. Parents rated the children's social skill and competence as significantly worse than did the children themselves, but there was considerable agreement about the areas that were problematic. Using an informal measure to highlight their children's difficulties, parents raised issues relating to conversation skills, social emotional reciprocity and peer relationships. The implications for assessment and intervention are discussed. (Contains 1 table.)

Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10 K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. [ABSTRACT FROM AUTHOR]

Echolalia has been described as the repetition of words, phrases, songs or other more elaborate dialogues uttered by another person, which may be immediate or delayed (International Classification of Diseases, 11th Revision; Diagnostic and Statistical Manual of Mental Disorders, 5th ed.). Some classify echolalia as a communication impairment reflective of delay, while others consider it a restricted, repetitive pattern of behaviours, without meaningful communicative function. Little attention is given to the experiences of non-clinicians, such as parents or teachers who may hold valuable insights to further our understanding of this phenomenon. This study forms part of a larger programme of inquiry which interviewed parents (N = 133) about their experiences of their sons' and daughters' echolalia. Using hermeneutic phenomenological analysis in an abductive framework, we present a perspective of echolalia that has largely remained silent in literature: echolalia as an expression of neurodiversity. Participants push back against the status quo of intervention, reclaiming echolalia as being a part of their child's identity. Participants want their children to not only enjoy their echolalia but to fully embrace it as being a part of their individual identity. We propose alternatives to a purely clinical perspective of echolalia; alternatives that may place the neurodiversity-affirmative perspectives of our participants in a co-existing tension with clinicians. Echolalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children's echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don't want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child's echolalia to be modified, to be able to exist side-by-side. [ABSTRACT FROM AUTHOR]

Many autistic children experience changes in core symptom severity across middle childhood, when co-occurring mental health conditions emerge. We evaluated this relationship in 75 autistic children from 6 to 11 years old. Autism symptom severity change was evaluated for total autism symptoms using the autism diagnostic observation schedule calibrated severity score, as well as social-communication symptoms calibrated severity score, and restricted/repetitive behaviors calibrated severity score. Children were grouped based on their symptom severity change patterns. Mental health symptoms (attention-deficit hyperactivity disorder, anxiety, disruptive behavior problems) were assessed via parental interview and questionnaire and compared across the groups. Co-occurring mental health symptoms were more strongly associated with change in social-communication symptom or restricted/repetitive behavior severity than with total autism symptom severity. Two relevant groups were identified. The social-communication symptom-increasing-severity-group (21.3%) had elevated and increasing levels of anxiety, attention-deficit hyperactivity disorder, and disruptive behavior problems compared with children with stable social-communication symptom severity. The restricted/repetitive behavior-decreasing-severity-group (22.7%) had elevated and increasing levels of anxiety; 94% of these children met criteria for an anxiety disorder. Autism symptom severity change during middle childhood is associated with co-occurring mental health symptoms. Children that increase in social-communication symptom severity are also likely to demonstrate greater psychopathology, while decreases in restricted/repetitive behavior severity are associated with higher levels of anxiety. For many autistic children, the severity of their autism symptoms changes during middle childhood. We studied whether these changes are associated with the emergence of other mental health challenges such as anxiety and attention-deficit hyperactivity disorder. Children who had increased social-communication challenges had more anxiety and attention-deficit hyperactivity disorder symptoms and disruptive behavior problems than other children. Children who decreased their restricted and repetitive behaviors, on the contrary, had more anxiety. We discuss why these changes in autism symptoms may lead to increases in other mental health concerns. [ABSTRACT FROM AUTHOR]

Relative to parents of children with neurotypical development and other developmental disabilities, parents of autistic children experience higher levels of parenting stress, which are associated with deleterious consequences for parents' mental and physical health and child functioning. Despite urgent calls to action, parenting stress is rarely addressed directly in interventions for families of autistic children, and less so in underserved and racial/ethnic minority populations where clinical needs are greater. This study tested the efficacy of mindfulness-based stress reduction, compared to a psychoeducation and support intervention, in reducing parenting stress among diverse families of autistic preschoolers. Participants (N = 117) were randomly assigned to the mindfulness-based stress reduction or psychoeducation and support groups; assessments were conducted at baseline, immediately postintervention, and 6 and 12 months postintervention. Results indicated significant reductions in parenting stress across both the mindfulness-based stress reduction and psychoeducation and support intervention conditions; however, reductions in parenting stress were greater for parents in mindfulness-based stress reduction than in psychoeducation and support. Furthermore, the benefit of mindfulness-based stress reduction relative to psychoeducation and support increased over time, with significant group differences in parenting stress detected at 12-month follow-up. Parents of autistic children often experience high levels of parenting stress, which can have negative mental and physical effects on both the parent and child. This study tested the efficacy of mindfulness-based stress reduction in reducing parenting stress in parents of preschool-aged autistic children compared to a psychoeducation and support intervention. We assessed parenting stress before and after the interventions and at 6- and 12-month follow-up. Both interventions significantly decreased parenting stress, but mindfulness-based stress reduction reduced stress more than did psychoeducation and support, with the strongest effect observed 1 year later. This suggests that the stress-reducing benefits of mindfulness-based stress reduction persist and may increase over time. [ABSTRACT FROM AUTHOR]

Improving social communication is a frequent goal of early autism services. However, it is unclear whether existing models of social communication align with the perspectives and priorities of key stakeholders, including parents, teachers, and expert clinicians. Stakeholder perspectives on social communication characteristics and priorities for young autistic children were gathered during seven focus groups. Participants included parents (three groups; n = 21), teachers (two groups; n = 8), and experts in early social communication and autism (two groups; n = 14). Content analysis procedures were used to develop and refine a codebook for themes and sub-themes that emerged from the focus group data and to code this data. Qualitative data analysis revealed several themes consistent with existing models of social communication in autism (expressive and receptive communication; social interaction), as well as novel themes related to unconventional communication, the impact of context on social communication, and the role of emotion regulation in social communication. Overall, participants expressed that adequately capturing autistic children's social communication skills was challenging because autistic social communication is influenced greatly by a number of contextual, relational, motivational, and regulatory factors. These findings provide valuable insight for aligning social communication measurement and support with stakeholder priorities. Improving social communication is often one goal during early autism services. However, researchers do not yet know whether their ideas about which social communication skills should be targeted during services for young autistic children are the same as the goals of autism community members, such as parents, teachers, and expert clinicians. This study used focus groups (meetings of small groups of community members) to ask people from these groups about what aspects of social communication are most important to support in young autistic children. A total of 43 people participated in these focus groups. These groups included parents (three groups; 21 people), teachers (two groups; 8 people), and experts in early social communication and autism (two groups; 14 people). Focus group participants talked about several aspects of social communication that were already familiar to the research team, such as problems with expressive communication, language understanding, and social interaction. However, participants also talked about several parts of social communication that were less familiar to the research team and had usually not been mentioned in previous research. These included (1) considering the value of unusual forms of communication, (2) taking context and setting into account when considering social communication, and (3) how communication and emotion regulation impact one another. The information from these focus groups will be helpful to making sure that researchers and clinicians focus their social communication supports on areas that are most important to parents and teachers. [ABSTRACT FROM AUTHOR]

Autism spectrum disorder requires a careful approach from professionals and a favorable clinical environment for dental care and assistance. This article aims To perform a literature review about oral health among people with autism spectrum disorder and dental management strategies for this group. An integrative literature review was carried out in three databases, associating the descriptors: (autism or autism spectrum disorder) with (oral health or oral diseases) and (dental care or dental services). After identification and screening steps, 32 articles were included in the study. The most prevalent subjects were oral health conditions, parents' understanding and practical attitudes about oral health, treatment and management strategies, and the use of technology. The principal barriers to dental care were the scarcity of specialized professionals, unpreparedness in the referral system, poor accessibility of the clinics, and lack of specific care protocols. The world literature on the subject is scarce, and there is still a need for investment and scientific production due to the incidence of autism in the world population and the maintenance of difficulties and barriers in offering quality health care to this group. Autism spectrum disorder requires a more careful approach from oral health professionals and a favorable clinical environment related to dental care and assistance. This article has the objective to perform a literature review about the oral health-care knowledge and practices in people with autism spectrum disorder, as well as the characteristics of dental care for this group. It was carried out in three articles databases, associating descriptors such as autism or autism spectrum disorder; oral health or oral diseases; dental care or dental services. We identified 32 articles. The most prevalent subjects were oral health conditions, treatment strategies, parents' understanding and practical attitudes about oral health, management, and use of technology to improve oral health care. The principal barriers to people with autism spectrum disorder to access dental care were the scarcity of specialized professionals, unpreparedness in the referral system, poor accessibility of the clinics, and lack of specific care protocols. The world literature on the subject is scarce, and there is still a need for investment and scientific production due to the incidence of autism in the world population and the maintenance of difficulties and barriers in offering quality health care to this group. [ABSTRACT FROM AUTHOR]

Most studies of how parents of children with autism view the parent–child relationship used self-report questionnaires and focused on challenges. This study broadened the lens by interviewing parents using open-ended questions that provide an opportunity to raise challenging but also positive experiences. Seventy-five mother–father dyads were interviewed individually about their own and their spouses' relationships with their preschooler, and content analyses of their responses revealed nine relationship themes. In descending order, the themes mentioned most frequently by mothers were "Security and Closeness," "Love," and "Tenderness and Sensitivity," and by fathers were "Pleasure in Joint Activities," "Security and Closeness," and "Guidance." Positive themes were more common than challenging themes. Finally, more mothers mentioned the themes "Love," "Tenderness and Sensitivity," "High Involvement and Care," and "Difficulties" than did fathers, whereas more fathers mentioned the themes "Guidance," "Pleasure in Joint Activities," and "Limited Time with Child" than did mothers. The findings portray a nuanced view of the parenting experience of mothers and fathers of preschoolers with autism. Most studies of how parents of children with autism see the parent–child relationship used questionnaires completed by the parents and focused on challenges. This study broadened the lens by interviewing parents using open-ended questions that provide an opportunity to raise challenging but also positive experiences. Seventy-five mother-father dyads were interviewed individually about their own and their spouses' relationships with their preschooler, and we found nine relationship themes. In descending order, the themes mentioned most frequently by mothers were "Security and Closeness," "Love," and "Tenderness and Sensitivity," and by fathers were "Pleasure in Joint Activities," "Security and Closeness," and "Guidance." Positive themes were more common than challenging themes. Finally, more mothers mentioned the themes "Love," "Tenderness and Sensitivity," "High Involvement and Care," and "Difficulties" than did fathers, whereas more fathers mentioned the themes "Guidance" and "Pleasure in Joint Activities" than did mothers. The findings portray a nuanced view of the parenting experience of mothers and fathers of preschoolers with autism. [ABSTRACT FROM AUTHOR]

The commonly used Vineland Adaptive Behavior Scales (VABS-3) divides adaptive behavior into three domains comprising three subdomains. The validity of this three-factor structure has not been explored in autistic samples, which are often heterogeneous with respect to language and IQ. Furthermore, although there are two comparable forms, Comprehensive Interview Form and Comprehensive Parent/Caregiver Form (a questionnaire), the original validation was based on interview data. Considering the widespread use of the VABS-3 in autism research, and the increased feasibility of online-administered questionnaires, it is necessary to establish the validity of the Parent/Caregiver form in autistic individuals across a range of abilities. This study aimed to investigate the measurement invariance of the VABS-3 Parent/Caregiver form between a minimally verbal group and verbal group of autistic people; however, poor overall fit of the three-factor structure precluded invariance analyses. Subsequent analyses suggested poor fit in both language and age groups, as well as a unidimensional model. The results of the current study suggest that neither the three-factor or unidimensional model fit the VABS-3 Parent/Caregiver Form, thereby cautioning against interpretation of domain or overall adaptive behavior composite scores in autistic individuals and further encouraging careful consideration of administration format. Adaptive behavior is a broad set of skills needed to function in everyday life. The Vineland Adaptive Behavior Scales (VABS-3) is commonly used to measure adaptive behavior. It divides adaptive behavior into three domains, Communication, Daily Living Skills, and Socialization, each of which are split into subdomains. Analyses of this three-part structure of the first version of VABS used the instrument as an interview, but now it is done as a questionnaire as well. The structure has not been well supported in samples of autistic people, who often have different strengths and challenges in adaptive behavior compared with non-autistic people. Because adaptive behavior is an important concept in autism research and online-administered questionnaires are increasingly common, it is important to ensure the structure of the VABS-3 Comprehensive Parent/Caregiver Form (VABS-3:CPCF; a questionnaire) works well for autistic individuals across a range of abilities. This study aimed to investigate whether VABS-3:CPCF measures adaptive behavior similarly in verbal and minimally verbal autistic people. However, the data didn't fit the structure in the first step of the analysis, so this could not be investigated. The next analyses also found the three-domain structure didn't fit in different age and language groups. In addition, the data didn't fit a structure combining all the domains into 1 (unidimensional). These results suggest that neither the three-factor or unidimensional structure fit the VABS-3:CPCF, cautioning against interpretation of domain or overall adaptive behavior composite scores in autistic individuals and further encouraging careful consideration of administration format. [ABSTRACT FROM AUTHOR]

Parent involvement in social skills training programs for autistic children has been associated with improvement in child and family functioning. However, limited research has explored parents' treatment experiences, which may elucidate key therapeutic elements mediating long-term maintenance of outcomes. This study examines parent perspectives on the University of California, Los Angeles Program for the Education and Enrichment of Relational Skills (PEERS®) for Preschoolers, a group-based social skills intervention for young autistic children with social challenges. Twenty-four parents reported on outcomes and participated in semi-structured interviews 1–5 years after program completion. Inductive thematic analysis was used to categorize parent responses across four domains: Parenting behaviors, Child Outcomes, Parent Perspectives, and Challenges within Treatment. Results demonstrated an overall positive impact of PEERS® for Preschoolers, with children displaying increased social competence in peer interactions and parents emphasizing greater positivity, new parenting strategies, increased understanding, and more robust community support. Mixed methods analyses revealed that parents who endorsed continued use of social coaching skills, in particular priming and preparing their child for social interactions, showed greater improvements in long-term child functioning and parenting stress. Findings validate the efficacy of PEERS® for Preschoolers, while emphasizing the value of providing strengths-based coaching and social supports to parents participating in social skills treatment for children on the autism spectrum. Autistic children have social communication differences that can contribute to difficulties making and keeping friends, as well as poor mental health (e.g. anxiety, depression). Social skills training programs for preschoolers on the spectrum have been shown to increase social functioning and improve outcomes. Parent involvement in these programs is essential, as parents are able to use the intervention strategies outside of sessions. Teaching parents skills to help their children is also thought to reduce parenting stress through empowerment, knowledge, and social support. However, we still do not know much about how parents experience social skills treatments and whether there are specific parts that are especially helpful to them. This study examined parent perspectives on the University of California, Los Angeles Program for the Education and Enrichment of Relational Skills (PEERS®) for Preschoolers, an evidence-based, group social skills intervention for autistic young children who are struggling socially. Twenty-four parents reported on their child's progress through questionnaires and participated in semi-structured interviews that asked about their experiences and perspectives 1–5 years after completing (PEERS®) for Preschoolers. Parents reported that their children displayed increased social skills and confidence after (PEERS®) for Preschoolers, while parents described feeling more positive, supported, and having greater understanding of their child and their development. Those parents who continued to use strategies taught in (PEERS®) for Preschoolers, particularly priming and preparing their child for social activities, showed greater improvements in long-term child outcomes and parenting stress. Overall, findings show that parents had a positive experience during and after PEERS® for Preschoolers, finding the program helpful in multiple ways to both their child and to themselves as a parent. [ABSTRACT FROM AUTHOR]

Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2–10 years) in Brazil. Parents (n = 18) of 2- to 10-year-old autistic children and clinicians (n = 20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent–child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil. Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2–10 years. The therapy is conducted with the autistic child's parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2–10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2–7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil. [ABSTRACT FROM AUTHOR]

Although global prevalence of autism has grown substantially, researchers still report inequity in access to evidence-based interventions in many low-resource settings where majority of world's children live. Capacity building of diverse stakeholders in low-resource settings has been suggested to be a potential way to mitigate low levels of access to resources; however, little is known about what these stakeholders consider as helpful strategies in capacity building. In this qualitative research, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with professionals in Mongolia. Three themes emerged from this study, including (a) partnership, (b) advocacy, and (c) empowerment. Each theme also contained several categories. For example, partnerships included enhancing collaboration among stakeholders and collaboration with international development agencies; advocacy included parental and legislative advocacy; and empowerment included training for diverse stakeholders, including caregivers and professionals. Implications and directions for future research are also suggested. Prevalence of autism is increasing all around the globe, but there is still great inequity in accessing evidence-based interventions. Although the field of autism research has made great strides in identifying and establishing evidence-based interventions, dissemination and implementation of these interventions have been reported as inequitable. This inequity is especially highlighted in many low-resource settings, such as Mongolia. As a field, there is still much to be learned about what strategies are used by stakeholders in low-resource settings to build capacity and to mitigate the hardships. To gain a deeper understanding of strategies for capacity building within a low-resource setting, we conducted five focus groups with 30 Mongolian caregivers of children with autism and 15 individual interviews with various professionals who work in Mongolia. These stakeholders reported three main strategies, including (a) partnership, (b) advocacy, and (c) empowerment, which included several strategies and implications on capacity-building practices. Furthermore, the findings from this study may suggest important implications for future intervention research. [ABSTRACT FROM AUTHOR]

We surveyed New Zealand parents of autistic children to identify their perceived barriers and facilitators to accessing support services, including the influence of a family's level of financial resourcing. A total of 173 completed surveys were analysed. Service pathway factors were the greatest barrier experienced by participants, whereas facilitators related to providers tended to be most helpful. Lower family income was associated with a higher number of reported barriers. Both lower family income and having a child who identified their gender as non-binary were predictive of rating the extent of barriers higher. Parents of younger or of non-speaking autistic children on average reported a greater number of facilitators. Implications of these results for support service delivery and potential areas for future research are discussed. Parents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents' access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents' rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research. [ABSTRACT FROM AUTHOR]

Despite documented healthcare disparities among Latino autistic children, little is known about how their families experience the autism "diagnostic odyssey." Pediatricians have a critical role in the "diagnostic odyssey," but when it becomes arduous, parents may also use complementary health approaches, particularly when conventional care does not adequately address their concerns. Shared decision-making is important in healthcare for autistic children, especially when parents also choose complementary health approaches; but little is known about shared decision-making among Latino parents of autistic children. We conducted a 12-month ethnography with 12 bicultural/bilingual Latino families of autistic children to understand their healthcare experiences (conventional and complementary health approaches) for their children, focusing on shared decision-making. Thematic analysis revealed: (1) most pediatricians were involved early in the "diagnostic odyssey" but were largely uninvolved thereafter; (2) conventional healthcare was satisfactory to the parents for physical health, but not developmental issues; and (3) parents who used complementary health approaches were more frustrated about a lack of autism information from pediatricians than those who did not. Finally, (4) we describe two exemplars of successful shared decision-making between Latino parents and pediatricians. Increasing pediatricians' autism knowledge and ability to discuss complementary health approaches may facilitate shared decision-making and reduce healthcare disparities for Latino autistic children. Latino parents may choose to use complementary health approaches, such as vitamins, supplements, and special diets, for their autistic children. However, they might not tell their pediatrician about their complementary health approach use if they worry that the pediatrician will disapprove or judge them. This fear, along with pediatricians' lack of autism knowledge, creates barriers to "shared decision-making" between parents and pediatricians. Shared decision-making is a process where families and healthcare providers collaborate and exchange information in order to come to an agreement about treatment options. In our qualitative study with 12 bilingual Latino families of autistic children, we interviewed and observed families to learn about their experiences with both conventional healthcare (their pediatrician) and complementary health approaches. Our study results describe the parents' different pathways to an autism assessment, a process that is sometimes called the "diagnostic odyssey." The parents reported that conventional healthcare met their needs for their child's physical health but not for their child's developmental challenges. The parents who used complementary health approaches for their autistic children were more frustrated about a lack of autism information from pediatricians than those who did not use complementary health approaches. Finally, we describe two examples of successful shared decision-making between parents and pediatricians. We conclude that pediatricians who are able to talk about complementary health approaches with Latino families may help to facilitate shared decision-making and reduce healthcare disparities for Latino autistic children. [ABSTRACT FROM AUTHOR]

The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child's mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child's mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers. Autistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child's mental health – positively and negatively – and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child's difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

Many autistic adults experience public stigma and some internalise this stigma with negative effects on their mental health. While efforts to reduce public stigma are paramount, change can be slow, and interventions to prevent internalised stigma may also be needed. Using a mixed methods online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma-related support programme for autistic adults is needed and, if so, what it should 'look' like. Quantitative data (summarised descriptively) showed that most participants felt it was important for autistic adults to have support in managing stigma and revealed diverse preferences in terms of programme delivery, underscoring the need for flexibility. Using reflexive thematic analysis, four main themes were identified from the qualitative data: (1) 'We need to change society not autistic people', (2) 'Stigma is difficult to manage alone', (3) 'Focus on positive, practical support', and (4) 'There is no one size fits all approach'. We discuss the important implications our findings have for how future interventions in this area are framed and delivered. Many autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences. [ABSTRACT FROM AUTHOR]

Children with autism spectrum disorder (ASD) are often placed in inclusive mainstream education (ME) or exclusive special education (SE) settings. While ME settings usually offer less-intensive and structured intervention programs than SE settings, they offer more exposure to typically developing peers. A total of 121 children (2–5 years old) with ASD, 85 in SE and 36 in ME, completed two Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) assessments. Repeated-measures analysis of covariance (ANCOVA) analyses were used to assess longitudinal changes in ADOS-2 calibrated severity scores (CSS) and language production (estimated from the ADOS-2), while accounting for baseline cognitive scores, age of diagnosis, and parent-reported intensity of intervention. Longitudinal changes in ADOS CSS did not differ significantly across educational settings but were strongly associated with the age of diagnosis, demonstrating that children diagnosed earlier improved more regardless of educational settings. These findings suggest that children with ASD placed in SE and ME exhibit similar longitudinal changes in core ASD symptoms. Further studies comparing additional outcome measures such as cognitive abilities and adaptive behaviors are highly warranted for establishing placement recommendations and public health policies. Today, children with autism spectrum disorder (ASD) are placed in mainstream or special education settings somewhat arbitrarily with no clear clinical recommendations. Here, we compared changes in core ASD symptoms, as measured by the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) clinical assessment, across ASD preschool children placed in special or mainstream education. Longitudinal changes in ADOS-2 scores did not differ significantly across settings over a 1- to 2-year period. While some children improved in core ASD symptoms, others deteriorated in both settings. This highlights the need to identify specific criteria for establishing meaningful placement recommendations. [ABSTRACT FROM AUTHOR]

Early support should help autistic children lead flourishing lives. We sought to understand parents' experiences of their children's involvement in early intervention and associated research, through focus groups with 23 parents (of 22 children) enrolled in a university-affiliated service. Reflexive thematic analysis revealed four themes. Parents conveyed a strong sense of gratitude (Theme 1) arising from their perceptions of the importance of early intervention and feelings of having 'hit the jackpot' to secure access to the service from which they perceived their children 'gained so much'. They valued the service and staff expertise which made them feel secure (Theme 2). University affiliation and the associated research also contributed to parents' sense of safety, from perceived 'accountability' and 'integrity'. Parents conveyed deep commitment to the service (Theme 3) but shared often-negative experiences as their child's enrolment came to an end (Theme 4) and they expressed feelings of abandonment and disempowerment, being confronted with the reality of needing to secure next-stage support for their children and of perceived critical need for 'conversion of research into practice'. These parents' accounts offer insights into the benefits and ongoing challenges of achieving truly effective supports for autistic preschoolers and their families. Support for autistic children early in life should help them to lead flourishing lives. However, many of the early intervention programmes for young autistic children are time-consuming and costly for families. These programmes are also often conducted in settings that are not closely matched to real life. We spoke to 23 parents (of 22 autistic children) to understand their experiences of their children's involvement in early intervention. Parents told us they were grateful for the opportunity, that they had 'hit the jackpot', and their children had 'gained so much' from the programme. They seemed to value the service because it made them feel safe and secure during an uncertain time in their children's lives. Parents told us they trusted staff, felt that they weren't 'doing it alone', and this 'took that pressure off' and helped them feel empowered. They also spoke of feelings of safety from being linked to the university research programme which offered 'accountability' and 'integrity'. Parents' comments showed a strong commitment to the early intervention model and staff – but also common feelings of abandonment and disempowerment as their child's time with the programme came to an end and they went 'back to the real world' and needed to find new supports for their children. These parents' insights should help to inform the design and delivery of community supports for preschool-aged autistic children and their families, which match the reality of their lived experiences. [ABSTRACT FROM AUTHOR]

Gender-typical play is observed throughout childhood for non-autistic children. However, there has been limited research into the gender typicality of autistic children's play compared to that of non-autistic children. In a longitudinal population-based cohort, we compared gendered play behaviours in autistic and non-autistic children using standardised parent-report (30, 42 and 57 months) and child-report (8 years) data (N = 11,251). We observed no difference in gendered play behaviours between girls with or without autism at any time point. Autistic and non-autistic boys did not differ in the gender typicality of their play when aged 30 months, but the play of autistic boys appeared less masculine than that of non-autistic boys (β = −1.1, 95% confidence interval = −2.1 to −0.2; and β = −2.6, 95% confidence interval = −4.7 to −0.5) at 42 and 57 months. Autistic boys also self-reported less masculine play behaviours than non-autistic boys at 8 years of age (β = −3.4, 95% confidence interval = −6.6 to −0.2). We found that autistic boys' play was less gender typical than that of non-autistic boys in middle and later childhood. Our findings highlight the importance of examining gendered play behaviours in a developmental context and have relevance for understanding the development of gender identity in autism. Non-autistic children tend to show gendered patterns of play behaviours – boys are more likely to play with 'masculine' toys, and girls are more likely to play with 'feminine' toys. However, little is known about whether autistic children follow these patterns as well. We looked at the masculinity and femininity of autistic and non-autistic children's play behaviours at multiple time points. Parents reported their children's play behaviours at ages 30, 42 and 57 months, and children reported their own play behaviours at 8 years old. We found no difference between autistic and non-autistic girls, who both showed more feminine play behaviours as they got older. Autistic boys' play behaviours were reported as less masculine than non-autistic boys at 42 and 57 months, and at 8 years old. We also found that non-autistic boys' play tended to become more masculine as they got older, but this was not the case for autistic boys. Our findings suggest that differences in autistic and non-autistic boys' play behaviours may develop at around 42 months old. [ABSTRACT FROM AUTHOR]

Autistic people are often portrayed as lacking empathy. Yet they are not indifferent to others' feelings. To advance our understanding of the early development of empathy in autistic children, this longitudinal study followed the development of four empathy abilities: emotion contagion, attention to others, emotion acknowledgment, and prosocial actions, in 1- to 6-year-old autistic children (N = 61; Mage = 55.49 months), in comparison with non-autistic peers (N = 145; Mage = 52.16 months). Once a year, for 4 consecutive years, children's empathic reactions were evaluated by experimenters who acted out emotional episodes to elicit empathy in children, and by parents who filled out empathy questionnaires. We confirmed autistic children's difficulty attending to others, acknowledging others' emotions, and initiating prosocial actions. However, according to parents, they did not differ from non-autistic children in emotion contagion with others' negative emotions. Notably, autistic children showed a greater increase in prosocial actions over time than their non-autistic peers. We discussed how to interpret these findings in light of the "double empathy problem," and stressed the importance of removing the stereotypical view of autism. Furthermore, this study was among the first to show that autistic children have the potential to learn and to improve empathy skills. Empathy is a highly valued human capacity. Yet, autistic people are often portrayed as lacking in empathy. Recent research, which views empathy as a complex construct emerging from multiple interrelated emotional and cognitive processes, argues that, although many autistic people do have difficulty understanding others' emotions, and this may hinder them from responding to others in a prosocial manner, they are not indifferent to other people's feelings. Hoping to contribute to a better understanding of the unique challenges that autistic children face in their empathy development, we followed the development of four empathy abilities: emotion contagion, attention to others, emotion acknowledgment, and prosocial actions, in 1- to 6-year-old autistic children, in comparison with non-autistic children. Once a year, for 4 consecutive years, children's empathy abilities were evaluated by experimenters who acted out emotional episodes to provoke empathy in children, and by parents who filled out empathy questionnaires. We found that autistic children experienced indeed more difficulty attending to others, acknowledging others' emotions, and initiating prosocial actions toward others. However, according to parents, they did not differ from their non-autistic peers in feeling along with others' negative emotions. This indicates that it might not be the case that autistic children did not want to act empathetically toward others. Rather, they might not know how to do so. Notably, despite these difficulties, when looking at children's developmental trajectories, autistic children showed similar improvements over time as non-autistic children. This provides evidence that autistic children have the potential to learn and to improve their empathy skills. [ABSTRACT FROM AUTHOR]

Most current autism research focuses on Western countries, where service availability and cultural experiences differ from those of individuals living in Asian countries, where collectivistic cultural values prevail and understanding of autism is emerging. By gathering data from Vietnamese parents of autistic children (N = 339), the current measurement study examined measure variance and invariance between the English version of the Illness Perception Questionnaire- Revised for Autism Spectrum Disorder (IPQ-R-ASD) and a Vietnamese translation of it, at the item, scalar, and factor levels. Results indicated measurement variance for only three of 37 items and highlighted different perceptions of autism between Vietnamese and North American parents, based on responses to the IPQ-R-ASD. Responses indicated that Vietnamese parents may have a different interpretation of the questions. Seven factors emerged on both the Vietnamese and English instruments, but items loaded differently, and a distinct factor emerged on the Vietnamese version. In sum, the current findings suggest that the IPQ-R-ASD can be useful for better understanding Vietnamese parents' perceptions of their children's autism, but the interpretation is somewhat different than on the English version, highlighting the importance of cross-cultural considerations in the study of autism in Western versus Eastern cultures. Raising an autistic child can affect many aspects of families' lives. Parents are responsible for many decisions, from initiating evaluation to selecting and implementing treatments. How parents conceptualize the course and nature of their child's diagnosis influences these processes and parents' own well-being. Parents' perceptions about their children's autism are also affected by cultural contexts and understanding of autism. The Illness Perception Questionnaire-Revised (IPQ-R) is widely used to study cognitions in chronic health research and has been adapted and validated to measure parents' perceptions and beliefs about their children's ASD (IPQ-R-ASD). However, such studies are mostly conducted in high-income countries (HICs) with western, individualistic cultural values (e.g. United States, Canada). Therefore, it is unclear whether the IPQ-R-ASD is a useful instrument in understanding parents' perceptions of autism in Vietnam, a lower- and middle-income country (LMIC) with collectivistic Asian cultural values. These differences suggest that parents in Vietnam may have cognitive representations of their children's autism that differ from those of parents living in HIC, western countries. The purpose of this study was to examine the usability of the translated Vietnamese IPQ-R-ASD that may, ultimately, help explore Vietnamese parents' autism perceptions. While the study's result indicated the usability of the translated measure in Vietnam, when interpreted with Vietnamese norms, results also highlighted notable differences between Vietnamese and North American parents' perceptions of autism that warrant further research. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

Friendships play a key role in supporting a successful transition to a new school for autistic children and young people. However, little is known about how these relationships have been impacted by restrictions put in place during the COVID-19 pandemic. This study aimed to explore how parents perceived the impact of COVID-19 on their autistic child's friendships during transition to a new school. Semi-structured interviews were carried out with 14 parents of autistic children in the United Kingdom. Data were analysed using reflexive thematic analysis. Parents discussed a variety of experiences, which differed between and within school types and age groups. Several factors influenced children's friendships during transition including support from their new school and others' understanding of their needs. Parents described the differing expectations of what friendship was and how that affected their children's existing and new relationships. For some, COVID-19 negatively impacted on friendships by reducing contact with existing and new friends. Others experienced positive or neutral experiences due to lockdown restrictions. This study highlights the diversity of needs among autistic children and calls for a personalised approach to transition support beyond the pandemic as one way of supporting autistic children to develop positive peer relationships. Research shows that moving schools can be a challenging time for autistic children and young people. One factor that has been found to support successful transition is friendships. However, there is little research exploring how transition between schools affects autistic children's friendships, and even less on how children's relationships during transition have been impacted by COVID-19. Fourteen parents of autistic children and young people were interviewed about their child's move to a new school and the impact they felt this had on their friendships. Parents described how moving with existing friends helped some children to find the transition less challenging. Others had differing experiences, with their children's friendships playing a much smaller role in the move. Differences were also seen with regard to the impact of COVID-19, with some parents speaking of how hard being away from friends was for their child, while others found the social restrictions a welcome break from interacting with peers. The study highlights how different the experiences of autistic individuals, and their parents, can be and the importance of a child-centred approach to transition support. [ABSTRACT FROM AUTHOR]

Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed. Families from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery. [ABSTRACT FROM AUTHOR]

While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents' experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents' experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field. The effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented but information on the experience of parents involved in parent-mediated interventions is limited. This study is the first synthesis of evidence concerning the experience of parents involved in parent-mediated interventions. It synthesizes the voice of 345 parents across the world into four general themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. The findings of our study provide evidence that parent-mediated interventions should be adapted to the needs of each family. Specific care and support should be offered to parents in addition to parent-mediated interventions. Our study, however, highlights which outcomes are important to parents and should be considered in future studies. [ABSTRACT FROM AUTHOR]

This randomized trial compared the first online parent training program for an evidence-supported executive function intervention for autism to in-person parent training with the same dose and content. Parents of autistic children (8–12 years-old; Full Scale IQ above 70) were randomized to in-person (n = 51) or online (n = 46) training. Training acceptability and feasibility were rated highly by parents, without significant differences between groups. The completion rate was lower for parents in the online versus the in-person training condition, but neither the total time spent with training materials, nor parent and child outcomes differed by condition. Parents reported that training resulted in a reduction in caregiver strain (Cohen's d = 0.66) and modest improvements in child flexibility, emotional control and global EF, but not planning and organization. Dose of parent training had a significant positive effect on child planning and organization problems. These findings did not support the hypothesized superiority of online to in-person training, but they did indicate online is as effective as in-person training at helping parents learn to improve their autistic children's EF abilities and reduce their own experience of parenting strain. Implications included increased access to training for parents who experience barriers to receiving in-person care. Trial Registration: clinicaltrials.gov Identifier: NCT02708069 This study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12 years of age and did not have intellectual disability. Parents were randomized to the in-person (n = 51) or online (n = 46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child's flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children's executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care. [ABSTRACT FROM AUTHOR]

Although person-first language is commonly used in many professional settings, this practice has received criticism from self-advocates and scholars who believe that identity-defining features, such as autism, cannot be separated from the individual. Arguments have been made that person-first language may perpetuate stigma by drawing attention to a disability through unconventional language. Increasingly, disability advocates have expressed preferences for identity-first language. We surveyed US autism stakeholders (n = 728) about their usage of and preferences for person-first language and identity-first language. Preference and use of terms varied across stakeholder groups (adults with autism, parents of autistic children, professionals, family members/friends, and a comparison group of people with little to no experience with the autism community). Autistic adults preferred to self-identify using identity-first language (87%); however, a sizable minority of adults with autism prefer to self-identify with person-first language (13%). Professionals were more likely to use, like, and choose person-first language terms, which is consistent with current guidelines for usage in professional settings and prescribed by style guides for written communication. As the language we use shapes our conscious and unconscious perceptions and beliefs of individuals with autism, it is critical to identify the terminology that is preferred by individuals within the community. There is currently disagreement among professionals (such as teachers, therapists, researchers, and clinicians) about the most appropriate and respectful way to refer to individuals with disabilities in general, and those with autism, in particular. Supporters of person-first language feel that it is important to emphasize the person rather than the disorder or disability, and promote the use of terms such as, "person with autism" or "a person with ASD." The goal is to reduce stereotypes and discrimination and emphasize the person's individuality rather than their disability. However, some people within the autism community have questioned the use of person-first terms because they are awkward and use an unconventional style of language that draws attention to the disability. Moreover, autistic individuals and their families are beginning to support the use of identity-first language that embraces all aspects of one's identity. Surveys in the United Kingdom and Australia support the idea that both types of language are preferred by different groups of autism stakeholder groups. In our study, we surveyed autism stakeholders in the United States. Overwhelmingly, autistic adults (n = 299) preferred identity-first language terms to refer to themselves or others with autism. Professionals who work in the autism community (n = 207) were more likely to support and use person-first language. Language is dynamic and our findings support the need for open communication among autism professionals about how we communicate with and about autistic individuals and their families. [ABSTRACT FROM AUTHOR]

The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents' lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child's development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. We interviewed 14 mothers and 4 fathers in Addis Ababa and the rural town of Butajira to explore what life is like for parents caring for children with developmental disabilities in Ethiopia. Cultural and religious beliefs played a role in the types of delays or differences in their child's development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. [ABSTRACT FROM AUTHOR]

Research regarding autistic children's sibling relationship quality is mixed, although some literature suggests poorer quality compared to children with other disabilities or who are neurotypical. Little is known about how the clinical characteristics of autistic children relate to parent perceptions of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum, ages 10–11 years, from an ongoing longitudinal study. Hierarchical multiple regressions tested the extent to which children's autism symptoms, behavioral difficulties, and communication abilities related to four domains of parent-rated sibling relationship quality. We also examined communication ability as a moderator of the effect of behavioral difficulties on parent-rated sibling relationship quality. More severe autism symptoms were associated with lower levels of conflict and rivalry, whereas higher communication ability was related to more relative status/power, but also conflict. Communication ability moderated the effect of behavioral difficulties such that behavioral difficulties were more closely associated with less warmth/closeness when children had weaker communication skills; behavioral difficulties were not significantly associated with other domains of sibling relationship quality. Findings underscore the importance of considering clinical characteristics and multiple domains of relationship quality to better understand how parents view the relationships between autistic children and their siblings. Sibling relationship quality is important for the well-being of children on the autism spectrum and their siblings. Little is known, however, about how varied behavior and abilities of children on the autism spectrum may be associated with parent perceptions of domains of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum (ages 10–11 years), participating in an ongoing longitudinal study. We looked at how three clinical characteristics (autism symptoms, behavioral difficulties, and communication ability) related to four areas of parent-reported sibling relationship quality (warmth/closeness, conflict, relative status/power, and rivalry). We also examined whether the strength of the association between behavioral difficulties and parent-reported sibling relationship quality was influenced by communication ability. We found that more severe autism symptoms were associated with less conflict and rivalry, and higher communication ability was associated with more relative status/power. We also found that children on the autism spectrum with more behavioral difficulties and weaker communication ability had less warmth/closeness in their sibling relationships. Our findings highlight that it is important to consider autism symptoms, behavioral difficulties, and communication ability, as well as multiple domains of relationship quality, to better understand how parents view the relationships between autistic children and their siblings. Clinically, methods for improving sibling relationships may include teaching conflict resolution strategies to children on the autism spectrum with stronger communication abilities and their siblings, and fostering sibling connection for those with lower communication abilities. [ABSTRACT FROM AUTHOR]

The present study examined the longitudinal associations of parents' discrimination experiences with children's internalizing and externalizing symptoms among families of autistic children and tested whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents' discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children's internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents' discrimination experiences at T1 had significant indirect effects on children's internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Theoretically, our findings elucidate how parents' discrimination experiences may longitudinally heighten children's internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents' discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development. Although many parents of autistic children are routinely discriminated against, the potential impact of this discrimination on their parenting processes and child-rearing outcomes has seldom been investigated. The present study addressed this gap in the literature by examining the longitudinal associations of parents' discrimination experiences with children's internalizing and externalizing symptoms among families of autistic children and testing whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents' discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children's internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents' discrimination experiences at T1 had significant indirect effects on children's internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Our findings have important theoretical contributions and significant practical implications. Theoretically, our findings elucidate how parents' discrimination experiences may longitudinally heighten children's internalizing and externalizing symptoms by adversely affecting parental well-being and parent–child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents' discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development. [ABSTRACT FROM AUTHOR]

Emerging research suggests overrepresentation of gender diversity among autistic youth. Previous gender diversity research with autistic children has relied on parent-report based on a single question. The Gender Diversity Screening Questionnaire–Self-Report and Parent-Report assessed gender diversity experiences from 244 children (140 autism spectrum disorder and 104 typically developing), between 10 and 13 years, and their parents. Parent-report Child Behavior Checklist Item-110, "Wishes to be the opposite sex," was also collected. Autistic children endorsed higher Gender Diversity Screening Questionnaire–Self-Report Binary Gender Diversity, t (223.21) = –2.83, adjusted p = 0.02, d = –0.35, and Nonbinary Gender Diversity, t (191.15) = –3.79, adjusted p = 0.001, d = –0.46, than typically developing children. Similarly, for Gender Diversity Screening Questionnaire–Parent-Report, there was a significant gender-body incongruence difference between the groups, t (189.59) = –2.28, adjusted p = 0.05, d = –0.30. Within-group analyses revealed that parents of autistic females-assigned-at-birth reported significantly more gender-body incongruence than males-assigned-at-birth, t (32.91) = –3.78, p < 0.001, d = –1.11. Moreover, distinct within-group profiles of gender experiences and internalizing symptoms were revealed, showing associations between gender profiles and symptoms of anxiety, depression, and suicidality. Results extend reports showing increased rates of gender diversity in autistic children based on both self-report and parent-report, underscoring the need to better understand and support the unique and complex needs of autistic children who experience gender diversity. Gender diversity broadly refers to the way in which an individual experiences (expressions and/or identities) their gender distinctly to that which would be expected based upon social norms for their gender assigned at birth. Recent research has shown a higher representation of gender diversity among autistic youth. Previous research in this area has relied on parent-report based on a single question from the Child Behavior Checklist Item-110, asking whether their child "Wishes to be the opposite sex." The Gender Diversity Screening Questionnaire Self-Report and Parent-Report were used to assess the experience of gender diversity in 244 children (140 autism spectrum disorder and 104 typically developing) between 10 and 13 years. The Item-110 was also collected. Results showed that autistic children endorsed much higher rates of Binary Gender Diversity (less identification with their designated sex and more with the other binary sex) and Nonbinary Gender Diversity (identification as neither male nor female) than typically developing children. Similarly, parents of autistic children reported significantly more gender-body incongruence experienced by their child than parents of typically developing children. Specifically, parents of autistic females-assigned-at-birth reported significantly more gender-body incongruence than autistic males-assigned-at-birth. Parent- and self-report measures were largely related. Moreover, statistical comparisons between and within the groups revealed associations between gender profiles and symptoms of anxiety, depression, and suicidality. Results extend previous reports showing increased rates of gender diversity in autistic children, now based on both self-report and parent-report, and highlight the need to better understand and support the unique and complex needs of autistic children who experience gender diversity. [ABSTRACT FROM AUTHOR]

Parents of children with autism in low-resource settings have reported exacerbated difficulties related to raising their children. In this single-case research using multiple probe design, four parent mentors and five parent peers and their children with autism in Mongolia participated in the parent peer coaching program. The intervention package, including training and coaching in evidence-based practices, was delivered via telepractice. Parent mentors completed online training and were coached by a bilingual and bicultural research assistant in a staggered fashion. Visual analysis revealed a functional relation between the intervention package and the coaching fidelity of parent mentors. Social validity data indicated that all participants were satisfied with the program and reported it was acceptable, feasible, and effective. Implications for conducting intervention research in a low-resource setting are described. Parents of children with autism are known to experience severe hardships related to raising their children. These hardships are exacerbated in low-resource settings internationally where there is very little resource for children and their families, including professionals who provide evidence-based treatment. Mongolia was chosen as an example of such low-resource settings in this single-case research, and four parent mentors and five parent peers and their children with autism participated and completed the study. A local parent group, the Autism Association of Mongolia, was actively involved in this study and helped with recruitment, development, adaptation, and implementation of the intervention to increase acceptability and feasibility. In addition, a local bilingual research assistant was also utilized as the purpose of this study was to build capacity of diverse stakeholders of children with autism in Mongolia. The research assistant was trained and coached by the research team on both content (communication teaching strategies and behavior management) and delivery (coaching adults), who then provided coaching to parent mentors via live videoconferencing in Mongolian. Parent mentors then similarly provided coaching to parent peers after observing the interactions with their children with autism. The findings suggest that parents can effectively deliver high-fidelity coaching to disseminate evidence-based treatment in low-resource settings when given proper training and coaching. Further examination on scalability and sustainment of effects is suggested. [ABSTRACT FROM AUTHOR]

This study examined factors of implementation in clinical practice across the world of the Pediatric Autism Communication Therapy, an evidence-based parent-mediated therapy. Data were gathered via a survey administered to professionals trained in Pediatric Autism Communication Therapy and parents with whom they worked. The study was a mixed-method design informed by the Consolidated Framework for Implementation Research. Over 70% of the practitioners recorded the intent to implement therapy after Pediatric Autism Communication Therapy training. Implementation was more likely if the practitioner saw mostly autistic children within their work (odds ratios ≈ 5), was easier with new referrals, and with peer support from colleagues and managers, allowing scheduling flexibility. The main barriers for practitioners were time (sessions > 1 h), suitable video equipment, low parental self-reflection abilities and family stress. Parents rated the feasibility of learning and using Pediatric Autism Communication Therapy in daily life highly (median = 5.4; interquartile range = 4.5, 6.8; range = 1–7) and delivered home-based practice a median of 4 days per week (daily practice recommended). The facilitators of implementation for parents included positive regard for the features of the Pediatric Autism Communication Therapy method (video reflection, parental empowerment, and play-based practice). The barriers for parents were mostly related to time availability. These results outline the importance of family and system-context factors necessary for successful parent-mediated therapy implementation.Factors influencing the implementation of parent-mediated intervention are insufficiently studied. This study examines for the first-time factors of implementation into clinical practice across the world of Pediatric Autism Communication Therapy, an internationally disseminated, evidence-based, parent-mediated therapy. From both the parents’ and the professionals’ perspectives, parents attitudes (e.g. self-reflection abilities and videotaping management) and life-circumstances (e.g. stressed families condition and time) were central factors. In this type of therapy, the target is a child’s development; still, this improvement is dependent on the parent’s behavior when interacting with their child. What’s more, Pediatric Autism Communication Therapy method (video reflection, empowerment of parent, play-based) was enabler according to most of the parents. And more, most professionals report factors linked to the Implementation Process that is planning, execution, reflection and assessment in implementation of a new therapy. Indeed, the professionals underlined barriers related to the population seen in practice, flexibility of schedule, support from colleagues and manager. All these factors could be improved and addressed with a formal implementation plan including factors related to the parents of each country. [ABSTRACT FROM AUTHOR]

Studies of language development in children with autism spectrum disorder (ASD) have been primarily focused on the influence of child-based factors such as autism traits, IQ, and initial language skills. Yet the findings of these studies are inconclusive. There has, moreover, been little research compared the relative influences of child-based factors with environmental factors, (e.g. parental inputs). The current study attempts to fill this research gap by examining a range of both child-based factors and parental inputs. We measured the structural language abilities manifested in parent-child interactions over four time points across nine months in 42 Chinese-speaking autistic children (M=57.42Studies of language development in children with autism spectrum disorder (ASD) have been primarily focused on the influence of child-based factors such as autism traits, IQ, and initial language skills. Yet the findings of these studies are inconclusive. There has, moreover, been little research compared the relative influences of child-based factors with environmental factors, (e.g. parental inputs). The current study attempts to fill this research gap by examining a range of both child-based factors and parental inputs. We measured the structural language abilities manifested in parent-child interactions over four time points across nine months in 42 Chinese-speaking autistic children (M=57.42months, SD=11.39). Our results showed that children’s mean length of utterance (MLU), word types, and word tokens grew rapidly, but their development trajectories varied. Initial expressive language ability was a significant predictor of children’s language outcomes, while nonverbal IQ and autism traits did not relate to children’s language abilities when controlling for initial expressive language ability. Parents’ MLU, word tokens, and word types did not associate with children’s structural language abilities. The findings shed lights on the importance of one of the child-based factors in particular, that is, initial expressive language skills, in the language development of autistic children.months, SD=11.39). Our results showed that children’s mean length of utterance (MLU), word types, and word tokens grew rapidly, but their development trajectories varied. Initial expressive language ability was a significant predictor of children’s language outcomes, while nonverbal IQ and autism traits did not relate to children’s language abilities when controlling for initial expressive language ability. Parents’ MLU, word tokens, and word types did not associate with children’s structural language abilities. The findings shed lights on the importance of one of the child-based factors in particular, that is, initial expressive language skills, in the language development of autistic children. [ABSTRACT FROM AUTHOR]

The aim of this research was to compare the mental health of families with children diagnosed with autism spectrum disorder or typically developing children, during the first and the second wave of COVID-19 outbreak in Slovakia. The study is mainly focused on the prevalence of depression, anxiety, and stress among the parents and maladaptive behavior or sleep disturbances of their children. Our research sample consisted of 332 caregivers, 155 of which have children with autism spectrum disorder; 179 surveyed during the first wave and 153 during the second wave. Extensive online parent questionnaire was created, including demographic and specific topic–related questions; Depression, Anxiety, and Stress Scale–42 questionnaire; and two subscales of Vineland Adaptive Behavior Scales—internalizing and externalizing maladaptive behavior. During the first wave, high levels of anxiety were found in parents of autism spectrum disorder children. During the second wave, all parents experienced increased levels of anxiety, stress, and depression, but especially severe for parents of children with autism spectrum disorder. Internalizing maladaptive behavior of children with autism spectrum disorder grew significantly between the waves. Parental depression, anxiety, and stress positively correlated with maladaptive behavior in both autism spectrum disorder and neurotypical children, suggesting a need for therapy options for whole families. [ABSTRACT FROM AUTHOR]

The purpose of this mixed-method study was to examine racial differences in parental beliefs and concern about autism spectrum disorder (ASD) versus clinical judgment. The sample included 489 children with ASD undergoing their first ASD evaluation. Parent belief that their child had ASD was highest among parents of White children. White children whose parents believed the child had ASD had lower ASD severity. Parents of Black/African American and Hispanic children were more likely to report communication concerns than parents of White children. Parental concern about social communication was related to higher ASD severity for Hispanic children. Implications for diagnostic processes are discussed. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic and its policy responses have had a detrimental effect on millions of people's mental health. Here, we investigate its impact on autistic people and their families using qualitative methods. Specifically, we addressed: how did autistic people experience an increase in social isolation during the initial lockdown? And how was their mental health impacted by lockdown? Autistic and non-autistic researchers conducted 144 semi-structured interviews with autistic adults (n = 44), parents of autistic children (n = 84) including autistic parents and autistic young people (n = 16). We deployed thematic analysis to identify key themes. The enhanced social isolation accompanying the pandemic had a serious and damaging impact on autistic people's mental health and subjective wellbeing. They spoke of intensely missing friends and more incidental forms of social connection. They also reported intense dissatisfaction with the substitution of embodied, person-to-person connection in health services by online/telephone-based alternatives, sometimes accompanied by serious negative consequences. These findings reveal the fundamental importance of supporting autistic people to maintain direct and incidental social contact during the pandemic and beyond. They speak against established theories that downplay autistic people's need for human connection and the extent to which they have been affected by social isolation during lockdowns. In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12–18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people's mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics. [ABSTRACT FROM AUTHOR]

This study adopted a community-engaged approach to explore Korean parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Understanding the experiences of culturally and linguistically diverse families and their children may help facilitate the development of more inclusive, appropriate, and culturally sensitive services. Semi-structured interviews with 20 Korean parents of autistic children were analyzed using a thematic approach. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. Perceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents' perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children. [ABSTRACT FROM AUTHOR]

Symptoms of autism spectrum disorder and attention-deficit/hyperactivity disorder often co-occur, challenging timely, and accurate diagnosis. We assessed the performance of three parent-report measures in discriminating autism spectrum disorder from attention-deficit/hyperactivity disorder without autism spectrum disorder (ADHDw/oASD) in school-age verbally fluent children. We examined the Autism Symptom Interview – School-Age and two widely used parent questionnaires: Social Responsiveness Scale – 2nd Edition and Social Communication Questionnaire – Lifetime. Receiver operating characteristic curves assessed each instrument's performance against the best-estimate clinician Diagnostic and Statistical Manual of Mental Disorders, 5th Edition diagnosis of autism spectrum disorder or of ADHDw/oASD (n = 74, n = 102, respectively; 6–11 years). These yielded moderate accuracies: area under the curve = 0.85, 0.79, and 0.78 for Social Communication Questionnaire – Lifetime, Autism Symptom Interview, and Social Responsiveness Scale – 2nd Edition, respectively. Area under the curve pairwise comparisons reached our statistical significance (p < 0.01) for the Social Communication Questionnaire – Lifetime versus the Social Responsiveness Scale – 2nd Edition. Within instruments, sensitivity and specificity varied across autism spectrum disorder cutoffs. Along with the between-instrument variability, this indicates that clinicians and researchers have valid options, depending on the settings and their goals. Comparing children correctly and incorrectly classified as autism spectrum disorder showed no differences in demographics, intellectual abilities, or in any specific clinical profile(s), except for the degree of parent concerns across autism spectrum disorder and comorbid psychopathology-related symptoms. Together, results suggest that complementing parent screeners with multiple sources may be needed to best differentiate school-age verbally fluent children with autism spectrum disorder versus ADHDw/oASD. We tested the ability of a short, recently developed parent interview and two widely used parent-report questionnaires to discriminate school-age verbal children with autism spectrum disorder from those with attention-deficit/hyperactivity disorder without autism spectrum disorder (ADHDw/oASD). These measures included the Autism Symptom Interview – School-Age, the Social Responsiveness Scale – 2nd Edition, and the Social Communication Questionnaire – Lifetime. The classification accuracy of all three parent screeners fell in the moderate range. Accuracy varied by instrument, and the Social Communication Questionnaire – Lifetime questionniare showed the highest accuracy. Children with autism spectrum disorder who were incorrectly classified by all parent screeners did not differ from those correctly classified in regard to demographics, intellectual abilities, nor in any specific clinical area beyond general parent concerns. These findings showed that there are valid screening options for assessing school-age verbal children with autism spectrum disorder versus ADHDw/oASD. They also underscore the need to assess multiple sources of information for increased accuracy. [ABSTRACT FROM AUTHOR]

This study explored the experiences of professionals and parents from the United Kingdom and China of autism-relevant policies, school involvement, and applied behavior analysis-based interventions. Semistructured interviews involving 36 parents and professionals and direct behavioral observations were carried out of five parents and three professionals. Results found: (1) a lack of autism support and applied behavior analysis-related services in both countries; (2) applied behavior analysis-based intervention was not as widely endorsed by healthcare or educational systems in the United Kingdom; Chinese parents faced challenges around inclusive education and accessing high-quality services and there was a social stigma attached to autism; (3) a limited awareness and application of early intensive behavior intervention in both regions; and (4) intervention fidelity with regards to the practice of one particular applied behavior analysis-based intervention, discrete trial teaching, was similar and increased with ongoing training. Professional and parental experiences were discussed in the context of policy and educational involvement. This study illustrates the need to support children with autism and to consider regional adaptations of evidence-based practice of behavior analysis for the affected population. The prevalence of autism is increasing, and the development of these children and the lived experience of their families have become a global concern. Applied behavioral analytic intervention is proved to be effective in improving their cognitive abilities, language skills, and social and emotional skills, but the service delivery between developed and developing countries is different. A qualitative study was conducted to explore personal experiences with actual practice fidelity of behavior analytic services for children with autism in a Western developed country (United Kingdom) and an Eastern developing country (China). The study found: (1) a lack of support for autism and behavioral analytic services in both countries; (2) applied behavioral analytic intervention was not as widely endorsed by healthcare or educational systems in the United Kingdom; Chinese parents faced challenges around inclusive education and accessing high-quality services and there was a social stigma attached to autism; (3) a limited awareness and application of early intensive behavior intervention in both regions; and (4) intervention fidelity with regards to the practice of one particular aspect of behavioral analytic interventions was similar and increased with ongoing training. This study emphasizes the need to support children with autism, and to consider regional adaptations of evidence-based practice of behavior analytic interventions for the affected population. [ABSTRACT FROM AUTHOR]

The lifelong and complex nature of autism necessitates an array of services and supports spanning across different sectors and providers at different life stages of an autistic individual. However, research has shown that autistic individuals and their families often experience barriers accessing the autism-related services and supports that they need. This is the first qualitative study to explore the provision and coordination of autism services and supports in Singapore from the perspectives of service providers, autistic adults and caregivers. Semi-structured interviews with 21 participants revealed three main themes: (1) improving access to autism-specific services, (2) creating flexible supports in an inclusive environment and (3) addressing stigma and changing societal attitudes. Our findings suggest that Singapore may have achieved rapid growth in autism services, but broader social structures may be slower to change. To better support autistic individuals in society, autistic voices need to be amplified and a collective effort is needed to achieve a paradigm shift from impairment to capability. Because autism is a lifelong and complex condition, autistic people may need a range of supports cutting across different sectors (e.g. health, education and social care) at different stages of their lives. Studies in some countries have shown that autistic people and their families face difficulties accessing the services they need, but no research has been done on this topic in Singapore. To start addressing this gap, we interviewed 21 service providers, autistic adults and caregivers/parents of autistic children to find out their perceptions and experiences of autism services and supports in Singapore. Our participants told us that beyond improving access to autism-specific services, they also hoped to see more flexible supports in an inclusive environment and a broader change in societal attitudes. This study highlights that autism service provision should be informed by autistic voices and not only focus on impairment but also recognise the strengths of autistic people alongside their very real needs. The whole of society – including policymakers, professionals, employers, educators, families and autistic people themselves – needs to work together to fight autism stigma and discrimination. [ABSTRACT FROM AUTHOR]

Children with autism spectrum disorder benefit from early, intensive interventions to improve social communication, and parent-implemented interventions are a feasible, family-centered way to increase treatment dosage. The success of such interventions is dependent on a parent's ability to implement the strategies with fidelity. However, measurement of parent strategy use varies across studies. Most studies use one of two types of observational coding measures (macro- and micro-codes). Macro-codes are known for being efficient while micro-codes are known for being precise. This study evaluates the reliability and validity of the NDBI-Fi, a macro-code, compared to a micro-code. Parent–child interaction videos for 177 participants were used to compare these measures. Results demonstrated that the NDBI-Fi had strong inter-rater reliability. It also had strong convergent validity with the micro-code after intervention. In addition, the NDBI-Fi was sensitive to change, and it demonstrated precision comparable to the micro-code. Furthermore, a novel scoring procedure detected differences in parents who learned different intervention strategy types. However, the NDBI-Fi did not demonstrate strong validity before intervention, particularly when measuring responsive intervention strategies. Taken together, findings support the use of the NDBI-Fi as an outcome measure, and future work should focus on continued development of valid pre-intervention macro-codes. Children with autism spectrum disorder benefit from early intervention to improve social communication, and parent-implemented interventions are a feasible and family-centered way to increase the amount of treatment they receive. For these treatments to be effective, it is important for the parent to implement the strategies as intended. However, measurement of parent strategy use is inconsistent across studies of parent-implemented interventions. This study evaluates the quality of the NDBI-Fi, an efficient measure, compared to a more time-consuming measure that is known to be precise. Videos of parents playing with their children were used to compare these two measurement methods. Results demonstrated that the NDBI-Fi was of good quality: scorers had high levels of agreement, the NDBI-Fi was similar to the more precise measure in rating parents after intervention, it detected changes from before to after intervention, and it detected differences when parents learned different types of intervention strategies. The NDBI-Fi was not as precise as the other measure across all strategies before parents learned intervention. Taken together, the findings of this study support the use of the NDBI-Fi as a high-quality outcome measure. [ABSTRACT FROM AUTHOR]

There is a critical need for validated screening tools for autism spectrum disorder in very young children so families can access tailored intervention services as early as possible. Few screeners exist for children between the recommended screening ages of 18–24 months. This study examined the utility of a new autism-specific parent-report screening tool, the Early Screening for Autism and Communication Disorders for children 12–36 months. Field-testing was conducted from five sites with 471 children screened for communication delays in primary care or referred for familial risk or concern for autism spectrum disorder. The Early Screening for Autism and Communication Disorders was evaluated in three age groups: 12–17, 18–23, and 24–36 months. A best-estimate diagnosis of autism spectrum disorder, developmental delay, or typical development was made. Receiver operating characteristic curves were examined for all 46 items and the 30 items that best discriminated autism spectrum disorder from the non-spectrum groups. Area under the curve estimates for the total were greater than 0.90 across age groups. Cutoffs were established for each age group with sensitivity between 0.86 and 0.92 and specificity between 0.74 and 0.85. Results provide preliminary support for the validity of the Early Screening for Autism and Communication Disorders as an autism-specific screener in children 12–36 months with elevated risk of communication delay or autism spectrum disorder. There is a critical need for accurate screening tools for autism spectrum disorder in very young children so families can access tailored intervention services as early as possible. However, there are few screeners designed for children 18–24 months. Developing screeners that pick up on the signs of autism spectrum disorder in very young children has proved even more challenging. In this study, we examined a new autism-specific parent-report screening tool, the Early Screening for Autism and Communication Disorders for children between 12 and 36 months of age. Field-testing was done in five sites with 471 children screened for communication delays in primary care or referred for familial risk or concern for autism spectrum disorder. The Early Screening for Autism and Communication Disorders was tested in three age groups: 12–17, 18–23, and 24–36 months. A best-estimate diagnosis of autism spectrum disorder, developmental delay, or typical development was made. Analyses examined all 46 items and identified 30 items that best discriminated autism spectrum disorder from the non-spectrum groups. Cutoffs were established for each age group with good sensitivity and specificity. Results provide preliminary support for the accuracy of the Early Screening for Autism and Communication Disorders as an autism-specific screener in children 12–36 months with elevated risk of communication delay or autism spectrum disorder. [ABSTRACT FROM AUTHOR]

Autistic girls' heightened social motivation and associated social coping strategies, such as camouflaging, mean they may be less likely to receive appropriate support in mainstream schools. In this research, a multi-informant approach was used to examine the camouflaging strategies used by autistic girls within specialist resource classes attached to mainstream schools (whereby girls transition between resource classes and mainstream classes). Semi-structured interviews were conducted with eight adolescent girls, their parents (eight mothers) and their educators (six teaching assistants/aides and one senior staff member) about the girls' camouflaging experiences. Using reflexive thematic analysis, four themes were identified: (1) inconsistencies and contradictions in camouflaging, (2) challenges of relationships and 'finding a tribe', (3) learning, inclusion and awareness and (4) consequences of camouflaging. These results highlight the challenges that the girls experienced when attempting to hide their autism and fit within both mainstream classes and specialist resource classes. These challenges had significant impacts on the girls' relationships and learning, as well as consequences for their mental health. The findings highlight the need for increased awareness of how camouflaging presents across the autism spectrum and suggests that individualised, evidence-based support will be essential for enabling autistic girls to flourish in school. There are a range of different types of schools that support children diagnosed with autism, including mainstream schools (where pupils are taught in general classrooms) and specialist schools (where pupils are exclusively taught alongside other children with special educational needs). An intermediary option involves resource bases attached to mainstream schools, which enable children to transition between mainstream and specialist educational settings. Autistic girls use a variety of strategies to negotiate the expectations and demands of school life. One of these strategies is known as camouflaging. This involves 'hiding' autism-based behaviours and developing ways to manage social situations, with the aim of fitting in with others. Research has shown that camouflaging can help to meet social expectations and friendships, but it can also result in challenges, including exhaustion and anxiety. In this study, we conducted detailed interviews with eight autistic girls, their parents and their school staff. The results showed that the girls tried to use camouflaging strategies to hide their autism and learning needs, especially within mainstream classrooms. Their camouflaging was often unsuccessful, which affected their relationships and sense of belonging. They also found camouflaging exhausting and distressing, which may (when combined with the demands of the classroom) affect their relationships, learning and mental health. This research provides important implications for supporting autistic girls who attend resource bases. These focus around increasing awareness of camouflaging and ways to support autistic girls, so they are included and able to fully participate and learn within school. [ABSTRACT FROM AUTHOR]