Background An increasing number of families are seeking assessment and support for autistic children who present with Extreme (or Pathological) Demand Avoidance (E/PDA) behaviours. However, research suggests the needs of these families may not be well understood or met by services. This study identifies their experiences and support needs, focussing on their interactions with services. Method Qualitative, semi-structured, online interviews with 21 parents of child(ren) with a formal diagnosis of autism and E/PDA behaviours. Interviews were analysed using an inductive, reflexive thematic analysis at a semantic level. Results Four themes describe the distinct experiences of families: (1) Understanding and acceptance of E/PDA behaviours is lacking; (2) Attributing blame: Judgements of E/PDA behaviours by others; (3) Lack of tailored support for E/PDA behaviours; (4) The E/PDA journey results in distress for all family members. Themes form the basis for a new interpretative model of familial experiences of E/PDA in which lack of understanding and acceptance of E/PDA drives neuro-normative judgements about E/PDA behaviours and parenting quality, leading to inadequately tailored support and familial distress. Conclusion Parents’ accounts point to a breakdown in service provision for families of children with E/PDA behaviours whose ‘complex’ or ‘atypical’ presentation of autism does not fit neatly within existing classification systems and a ‘label-based’ service model. Improving education and understanding about familial experiences of E/PDA behaviours amongst professionals and services, with greater ‘personalisation’ and ‘formulation-based’ approaches is urgently needed to optimise outcomes and prevent harm.
Background Virtual Reality (VR) is making education more engaging and accessible, especially for students with Autism Spectrum Disorders (ASD), promoting inclusion and the development of STEM skills in innovative ways. The literature still reveals a significant gap in terms of appropriate educational resources adapted to the specific needs of these students, resulting in difficulties in their inclusion. With the growing need for inclusive approaches in education, it is essential to find solutions to support these students. The aim of this study is to validate the data collection methodology that will enable the development of Virtual Learning Environments with STEM content for students with ASD. Methods The Design Science Research (DSR) methodology was used to develop a VR artefact for students with ASD. In addition, the Delphi method was applied in the expert involvement phase, which will contribute to the validation of the artefact's specific requirements. Both will allow for an inclusive and distinctive approach to the development of an artefact, with the aim of offering an innovative educational experience, meeting the varied needs and learning styles of students with ASD, optimising the effectiveness of the proposed VLE. Results The results show a strong acceptance among experts, highlighting the potential positive impact of this approach, although there are aspects to be improved to ensure a more comprehensive and effective approach. Conclusions This study highlights the successful validation of an innovative virtual reality programme for students with ASD, highlighting the importance of interdisciplinary collaboration and the strong contribution to the advancement of inclusive education.
The BTBR T+ Itpr3tf/J (BTBR) mouse strain manifests a peculiar behavioral phenotype that mirrors the core symptomatology of autism spectrum disorders, including alterations in social-communicative behavioral domains, and the presence of repetitive/stereotyped behaviors. Concurrent immune and metabolic imbalances characterize the BTBR phenotype and are exacerbated by specific gene mutations, resulting in severe multi-organs imbalances that recapitulate the symptoms of human autoimmune and metabolic disorders. The present review aims to retrace and summarize state-of-the-art regarding the genetic, immune, and metabolic features of the BTBR strain and address its potential use as a valid model to study the multi-system etiology and pathogenesis of neurodevelopmental disorders.
Background: Autism is characterized by social difficulties, yet many autistic people value and desire social relationships. Given the limited research on autism in adulthood, particularly among those with lower cognitive ability, this study aimed 1) to compare self- vs informant-report of social relationships (acquaintances, friendships, and interpersonal difficulties) and 2) to compare social relationships, between more cognitively able (MCA) and less cognitively able (LCA) autistic young adults. Method: Participants included 101 autistic young adults (Mage=25.90; SD=1.41; 82.0 % male; 79.8 % White) and their informants. Participants were interviewed, and the Interpersonal Difficulties and Social Relationships sections of the Social and Emotional Functioning Interview (SEF) were analyzed. Participants were classified as MCA (IQ >= 70) or LCA (IQ<70). Results: For the MCA sample, informant and self-report SEF scores were all positively correlated and did not have significantly different median values. Weaker and non-significant associations emerged for social contexts outside of the home (e.g., at work) and more abstract concepts (e.g., quality of relationships). Although cognitive ability impacted the extreme SEF scores (e.g., having self-initiated reciprocal friendships), many social difficulties were shared by LCA and MCA young adults, according to informant reports. Conclusions: This study is one of few on social relationships and autism to focus on adulthood and include LCA young adults. Results indicate that informant-report provides useful information on more concrete aspects of social relationships in this population. Many autistic young adults, and LCA young adults in particular, may benefit from additional social supports, yet it is also essential to collaboratively consider what types of social experiences and relationships are desired and feasible for each person. More research and intervention tailored to LCA autistic young adults are needed.
Background Behavioral interventions based on the principles of applied behavior analysis (ABA) are considered the gold standard approach for treating challenging behaviors commonly exhibited by children with autism spectrum disorder (ASD). However, questions have arisen concerning the safety of implementing traditional ABA procedures for the treatment of challenging behavior in natural settings. Over the past decade, a treatment package known as skill-based treatment (SBT) has emerged that may allow challenging behaviors in this population to be addressed in a safe, efficient, and effective manner. Methods We reviewed and summarized studies utilizing SBT published in English between 2014 and September 2023 using PsychINFO and PubMed databases. Two independent reviewers screened citations for inclusion. Data abstraction was performed by one reviewer and verified by a second reviewer. Results Twenty-one studies (3 consecutive controlled case series and 18 utilizing single-case experimental designs) met the inclusion criteria describing SBT conducted with 87 individuals. The majority of individuals treated with SBT were autistic children with language levels varying from non-vocal to fully fluent. Treatments were implemented in a variety of settings at least 1–2 times per week, with treatment requiring a range of 4 - 48.5 h of clinician time. Rates of challenging behavior were reported to decrease by 98.2 % (range: 90–100 %) on average. Treatments were implemented via telehealth for 8 individuals (9.2%). Data concerning treatment maintenance was reported for just 7 individuals (8.1 %). Conclusions SBT is a potentially effective treatment procedure for challenging behavior that can be conducted in a variety of settings including the child’s home, school, and via telehealth. However, future research is needed to understand the long-term effectiveness of SBT. Randomized controlled trials of SBT are also necessary in order to study the safety and efficacy of this treatment approach.
Background: Parent-child interactions (PCI) in infants with an elevated likelihood (EL) of autism start to diverge from other infants toward the end of the first year. This divergence is often attributed to emerging features of autism impacting infant social interactions in ways that become increasingly amplified. The aim was to identify which, if any, 12-month autism features were associated with later PCI qualities. Method: Twelve-month-old infants (N symbolscript 103) with early autism features symbolscript symbolscript on the Social Attention and Communication Surveillance-Revised tool) were assessed on the Autism Observa- tion Scale for Infants (AOSI) at 12 and 18 months, and on free play PCI using the Manchester Assessment of Caregiver-Infant Interaction at 18 months. Results: AOSI autism features at 12-months were associated with 18-month PCI qualities, inde- pendent of 18-month autism features. Specifically, infants with emerging features in social attention areas later showed less attentiveness to parents and lower dyadic mutuality. By contrast, infants with emerging sensorimotor atypicality/delay later showed increased attentiveness to parents and lower negative affect, their parents were more sensitively responsive, and their in- teractions were more mutual. Emotional regulation scores had no significant association with later PCI. Conclusions: The findings support the notion that PCI changes in EL infants are rooted in the transactional impact of early emerging autism-related features, which may have differential ef- fects on PCI. Pending replication in a larger sample using a detailed measure of early autism features, the findings suggest that early autism features may amplify or elicit interactions.
Background: Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods: We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results: There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions: These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood.
Background: Parents diagnosed with depression often report that their children have difficulty following rules and falling asleep. Parents with depression are less likely to be consistent or enforce bedtimes, resulting in the child having fewer bedtime rules and getting less sleep. Over time this may mean the child develops poor sleep habits and difficulty falling asleep. Although these relationships have yet to be studied in children diagnosed with Autism Spectrum Disorder (ASD), it is an important area given that approximately 80 % of autistic children have sleep difficulties. Methods: The current study examined whether parent-reported child sleep onset latency (SOL) mediated the relationship between parental depression and child noncompliance. The sample (N=34) consisted of parents (82 % female) reporting on their children aged 6-12 (M=8.63, SD = 2.00; 76.5 % male). All children were diagnosed with ASD and had parent-reported sleep complaints. Measures included the Child Sleep Health Questionnaire (CSHQ), the Pediatric Symptom Checklist (PSC), and a question asking if the parent had been diagnosed with depression (yes/no). Results: Greater parent-reported child SOL significantly mediated the relation between increased parental depression and greater noncompliance. Conclusions: These results suggest that difficulty falling asleep may help to explain why children of parents who have depression are noncompliant.
Background: Recent research has identified risk factors for hazardous alcohol use among autistic individuals, but correlates of age at first alcohol use are unclear. Methods: This study analyzed 49 U.S.-based autistic youth (ages 16-20) who had ever consumed alcohol. Participants were categorized as being less than 16 years old (n=28) or 16 years or older (n=21) at first alcohol use. The analysis aimed to descriptively compare youth with younger versus older age at first alcohol use. Results: Younger age at first alcohol use was associated with hazardous alcohol use, higher levels of anxiety, and lower masking of autistic traits Conclusions: These findings demonstrate that autistic youth are at risk for underage alcohol use. More research is needed on alcohol and substance use in this population to develop tailored prevention and intervention programs.
Purpose: This research follows two studies that examined the efficacy and acceptability of a stepped-care model of behavioral sleep intervention (BSI) delivered to parents of Autistic children via telehealth (Clarke et al., 2024a, 2024b). The current study investigated the collateral benefits of these interventions on Autistic children's internalizing and externalizing behaviors, healthrelated quality of life, and parent ratings of relationship quality, depression, anxiety, stress, and personal sleep quality. Methods and Results: Data were available for 17 Autistic children (aged 3-17 years) and 22 parent participants (16 mothers, six fathers) who had received a telehealth-delivered behavioral sleep intervention (TDBSI). Parents completed a range of psychometric assessments at baseline and within six weeks of completing the program. Alongside reduced sleep problem severity (SPS), significant improvements, as indexed by non-negligible Cohen's d values whose 95 % confidence intervals did not cross zero, were observed in children's emotional and behavioral difficulties and health-related quality of life. Parents also reported that improvement in their child's sleep positively influenced their own sleep quality and emotional well-being. There were no significant changes in parental relationship quality post-intervention, probably a ceiling effect. Conclusion: TDBSIs have the potential to generate collateral benefits for Autistic children and their families. This finding is consistent with the limited existent research, suggesting that improved sleep may enhance child and parent well-being. Future research should focus on understanding the mechanisms underlying collateral change, including variations in effects among children and parents, and the durability across different telehealth modalities (i.e., self-directed versus therapist-guided) and follow-up intervals.
Background: Autistic youth are at higher risk of presenting with co-occurring internalizing (I) (i.e., anxiety and depression) and externalizing (E) (i.e., aggression and impulsivity) disorders (Bauminger et al., 2010). The Child Behavior Checklist for ages 6-18 (CBCL/6-18; Achenbach & Rescorla, 2001) is a measure of I-E disorders and symptoms in autistic and neurotypical youth, providing norm-referenced subscales as factors for each form of psychopathology. The general psychopathology or "p" factor may provide a better measure of co-occurring disorders in autism as it has not been evaluated in this population contextually to date. The p factor proposes that psychopathological disorders come from the same etiological factor, implying that we can measure all I-E disorders as indicators of p. Method: Using archival data from the Province of Ontario Neurodevelopmental Disorders (POND) Network, (N = 782) autistic youths' raw scores from the CBCL/6-18 were analyzed using two confirmatory factor analyses (CFAs): an I-E CFA and a p factor CFA. An exploratory factor analysis (EFA) was also conducted to determine the best-fitting factor structure. Results: A chi-square difference test compared each CFA to find the best model fit. Results reported each model as individually significant, however, based on recommendations from Hoyle and Panter (1995), neither model had an acceptable fit. Conclusions: Given that neither the p factor nor the internalizing/externalizing factor models had appropriate fit, it is recommended that future research investigate whether the CBCL/6-18 is the most appropriate measure for assessing co-occurring symptoms in autistic youth. The results of the EFA also suggest that the CBCL may not be the most appropriate measure for autistic youth.
Background: Spatial attention is typically right-hemisphere lateralized, resulting in a bias to preferentially process information in the left visual field (VF). As atypical hemispheric lateralization is considered a fundamental neurobiological feature of autism, we assessed whether it is also evident in people who display higher levels of autistic-type traits but do not meet the criteria for a clinical diagnosis of autism. In doing so, we used a dual-stream attentional blink task - a task with heavy processing demands and stimuli displayed simultaneously in both VFs - to elicit interhemispheric competition and assess visual field asymmetries. Method: The participants were 82 university students, who had never been clinically diagnosed with autism, divided into two groups based on the level of autistic traits that they displayed on the Autism Quotient scale (AQ; Baron-Cohen et al., 2001). Two simultaneous streams of digitdistractors were displayed, one in each VF, and the participants' task was to identify two letter-targets that were displayed unpredictably in the left or right stream. Results: We found reduced VF asymmetries in higher autism-trait individuals, with the magnitude of the asymmetry correlating with AQ score. Conclusions: We suggest that the reduced VF asymmetries in individuals with higher autism traits may be due to increased perceptual processing capacity (Remington et al., 2009), which reduces hemispheric competition and, thus, visual field asymmetries. The findings also highlight that even subtle differences in the degree of autistic traits in the general population may be associated with differences in visual attention.
We aimed to analyse the available scientific evidence on the effects of exercise programs on sleep quality in autism spectrum condition. Studies were searched in five electronic databases (MEDLINE/PubMed, Web of Science, EBSCOhost Environment Complete, Dialnet Plus and Scopus) until February 2024 (updated in August 2024). A total of ten randomized clinical trials were included. The pooled mean difference for subjective sleep duration (Child's Sleep Habits Questionnaire [CSHQ] sub-scale), total CSHQ score, objective sleep duration and objective efficiency were - 1.62 points (95 % confidence interval [CI] - 2.34 to - 0.91; p < 0.001), -9.43 points (95 % CI: -16.89 to -1.97, p < 0.001), 0.42 h (95 % CI: 0.05-0.80, p = 0.03) and 9.91 % (95 % CI: 5.04-14.78, p < 0.001), respectively. In conclusion, exercise can serve as an adjunct therapy for managing sleep-related problems among children on the autism spectrum.
Background Parenting an autistic child can be physically and mentally challenging. The approach parents take in response to these challenges can vary and may be related to the level of stress they experience. Aims This study compared the stress levels among Hong Kong Chinese parents of autistic children, typically developing (TD) children, and those with other neurodevelopmental disorders (NDDs), and their relationship with associated parental and child’s factors. Methods In this cross-sectional online survey, 314 Chinese parents completed self-reported questionnaires assessing parental stress, child's autism and other NDDs diagnosis, broad autism phenotype (BAP), coping strategies, social support, and parental psychological flexibility (PPF). Hierarchical multiple regression was used to analyze the contribution of these factors to parental stress, and mediation analyses examined how social support and PPF might mediate the relationship between: (1) an autism diagnosis and parental stress, and (2) BAP and parental stress. Results Parents of autistic children reported significantly higher stress levels than other parents. The presence of a child’s autism and other NDDs, along with greater BAP traits, significantly contributed to higher parental stress. Social support and PPF were strong protective factors that mediated the relationship between having an autistic child, exhibiting BAP traits, and parental stress. Conclusions Management for parents of autistic children should focus on promoting social support networks and fostering psychological flexibility to alleviate caregiving burden, especially for those exhibiting greater BAP traits.
Purpose: The current study aimed to examine the similarities and differences in vocal characteristics between Mandarin-speaking 36-72-month-old children with autism spectrum disorder (ASD), children with developmental delay (DD), and typically developing (TD) children. Methods: We analyzed vocal characteristics during parent-child free play. Video and audio samples were collected from 21 children with ASD, 18 children with DD matched groupwise for developmental level, and 15 TD children matched groupwise for chronological age. Results: Compared to children in the DD and TD groups, children with ASD exhibited a significantly higher proportion of nonspeech vocalizations (NSV, p<0.01), atypical vocalizations (ATY, p<0.001), noncommunicative vocalizations (NCV, p<0.001), and no response to others (NR, p<0.001). These four metrics were significantly correlated with children's performance on the developmental evaluation and intelligence test. Receiver operating characteristic analyses indicated that the area under the curve (AUC) ranged from 0.871-0.978, with moderate accuracy, when using these four metrics to differentiate between children with ASD and TD children; this value improved to 1.000 with high accuracy when combining the four metrics. The AUC ranged from 0.747-0.820 when using the four metrics to differentiate children with ASD from those with DD and improved to 0.857 when combining the four metrics. Conclusion: These preliminary data suggest that vocal communication and vocal atypicality may be unique features of children with minimally verbal ASD and that the four metrics-NSV, ATY, NCV, and NR-have the potential to be ASD behavioral markers in screening and diagnosis.
Background: Challenging behavior has been examined in older children and adolescents with autism spectrum disorder (ASD), but less is known about these behaviors in toddlers, due in part to variability in measurement and limited instruments available for this population. To address this need, this study examined the psychometric properties of the Child Behavior Checklist (CBCL), a commonly used and widely validated measure of challenging behavior, in a group of toddlers with ASD. Method: Participants included 496 toddlers aged 18-48 months with (n=398) and without (n= 100) a diagnosis of ASD. Psychometrics of the CBCL were analyzed including internal consistency, factor structure, and measurement invariance. Results: Confirmatory factor analysis results indicated acceptable fit for the tested model, and internal consistency was largely acceptable. All levels of measurement invariance were tested for each subscale. The Emotional Reactivity, Anxious/Depressed, Withdrawn, and Aggressive Behavior subscales achieved scalar invariance, while the Attention Problems subscale achieved metric invariance, and the Somatic Complaints subscale did not achieve even configural invariance. Conclusions: Results indicate the current CBCL conceptualization of challenging behavior in autistic toddlers is consistent with such constructs in older autistic children and provide preliminary support for the use of the CBCL to assess for challenging behavior in toddlers with ASD. Measurement invariance (MI) analyses support the construct validity of the CBCL in toddlers with ASD. However, based on the results of the MI analyses, some caution is warranted with specific subscales when conducting group comparison analyses between toddlers with and without ASD.
Background: Autistic children and adolescents have academic performance challenges and are often reluctant to participate in physical activities. Executive function (EF) abilities generally remain stable or worsen as autistic children get older and obesity and lack of physical fitness are frequent concerns experienced by these individuals. Finding ways to address these concerns has the potential to improve outcomes in autistic youth. Method: We conducted a 12-month, repeated-measures study to examine the effectiveness of a mandatory 35-minute daily school physical activity intervention involving low to moderate exertion for autistic adolescents (n = 29). Changes in fitness, EF, social responsiveness, and restrictive and repetitive behaviors were examined. Results: Significant improvements were seen in fitness, EF areas (specifically cognitive flexibility and planning/organizing), restrictive and repetitive behaviors and social responsiveness. Conclusion: Findings suggest that participation in a mandatory daily 35-minute physical activity program with low to moderate exertion is feasible and may contribute to improved EF, fitness, restricted and repetitive behavior, and social responsiveness in autistic adolescents.
Background Children with ASD experience significant gross motor challenges that could be addressed using motor interventions. However, contemporary ASD interventions that are sedentary in nature often target communication and fine motor skills and not children’s gross motor difficulties. Methods In the current pilot RCT, we evaluated changes in various motor outcomes (i.e., gross/fine motor coordination, locomotor skills, functional endurance, and praxis/imitation performance) following two types of whole-body motor interventions (Creative Movement (CM) or General Movement (GM)) and compared them to a Sedentary Play (SP) intervention focused on improving fine motor skills in children with ASD. Forty-five children with ASD (Mean Age ±SE: 8.7 ± 0.3, 38 males) were randomly assigned to the CM, GM, or SP groups and received 8 weeks of group-specific training. Results Both CM and GM interventions led to medium-to-large improvements in gross motor performance, including improved body coordination, strength/agility, locomotor skills, and walking endurance. Children in the CM group additionally showed medium-to-large-sized improvements in praxis performance, while children in the SP group showed improvements in fine motor performance. These training-related improvements were supported by improvements reported via parental questionnaires. Conclusions Researchers and clinicians should incorporate whole-body interventions targeting gross motor skills in the plan of care for children with ASD.
