Reliability, Validity and Acceptability of the PEDI-CAT with ASD Scales for Australian Children and Youth on the Autism Spectrum.

PURPOSE: The PEDI-CAT (ASD) is used to assess functioning of children and youth on the autism spectrum; however, current psychometric evidence is limited. This study aimed to explore the reliability, validity and acceptability of the PEDI-CAT (ASD) using a large Australian sample. METHODS: Caregivers of 134 children and youth on the spectrum participated in clinical assessments involving the administration of the PEDI-CAT (ASD), Vineland-3, PEDI-CAT (Original) and a feedback instrument. The PEDI-CAT (ASD) content was compared to the ICF Core Sets for ASD to summarize areas of functioning assessed and relevance to autism. RESULTS: The PEDI-CAT (ASD) demonstrated good to excellent internal consistency and test-re-test reliability. Parallel forms reliability with the PEDI-CAT (Original) included significant correlations (good to excellent), however, t-tests showed significantly higher Social/Cognitive scores for the ASD version. Convergent validity results demonstrated that most PEDI-CAT (ASD) and Vineland-3 core domains were significantly correlated (poor to good). Content analysis revealed that the PEDI-CAT (ASD) covered less than half of the ICF Core Sets for ASD (mostly Activities and Participation codes). Just over half the codes assigned to the PEDI-CAT (ASD) were represented in the ICF Core Sets for ASD. Feedback on the acceptability of the measure was mixed, but overall was it was considered user-friendly and efficient. CONCLUSION: The PEDI-CAT (ASD) had adequate psychometric properties and acceptability as a measure of Activities and Participation codes. However, it lacks comprehensiveness and relevance when compared to the ICF Core Sets for ASD and has the potential to overestimate functioning.

Psychometric Properties of the Parental Stress Scale in Swedish Parents of Children with and without Neurodevelopmental Conditions.

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs. Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337). Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39). Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Validating the International Classification of Functioning, Disability and Health Core Sets for Autism in a Sample of Australian School-Aged Children on the Spectrum.

Assessing functioning of children on the autism spectrum is necessary to determine the level of support they require to participate in everyday activities across contexts. The International Classification of Functioning, Disability and Health (ICF) is a comprehensive biopsychosocial framework recommended for classifying health-related functioning in a holistic manner, across the components of body functions, activities and participation, and environmental factors. The ICF Core Sets (ICF-CSs) are sub-sets of relevant codes from the broader framework that provide a basis for developing condition-specific measures. This study combined the ICF-CSs for autism, attention deficit hyperactivity disorder (ADHD) and cerebral palsy (CP) to validate the ICF-CSs for autism in an Australian sample of school-aged children. This cross-sectional study involved caregivers of school-aged children on the spectrum (n = 70) completing an online survey and being visited in their homes by an occupational therapist to complete the proxy-report measure based on the ICF-CSs for autism, ADHD and CP. Absolute and relative frequencies of ratings for each of the codes included in the measure were calculated and reported, along with the number of participants who required clarification to understand the terminology used. Findings indicate that the body functions and activities and participation represented in the ICF-CSs for autism were the most applicable for the sample. However, findings relating to environmental factors were less conclusive. Some codes not currently included in the ICF-CSs for autism may warrant further investigation, and the language used in measures based on the ICF-CSs should be revised to ensure clarity.

The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets.

LAY ABSTRACT: Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people's situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders.

Assessment of functioning in ADHD according to World Health Organization standards: First revision of the International Classification of Functioning, Disability and Health Core Sets.

AIM: To conduct the first revision of the World Health Organization International Classification of Functioning, Disability and Health (ICF) Core Sets for attention-deficit/hyperactivity disorder (ADHD). METHOD: A Delphi-like method was used, integrating evidence from stakeholder feedback and developing and piloting the ADHD ICF Core Set platform to inform revisions to the ADHD Core Sets. RESULTS: A total of 27 second-level ICF codes were added to the comprehensive ADHD Core Set: body functions of temperament and personality, and basic sensory functions; activities and participation in terms of learning to read and write, spoken communication, community life, religion and spirituality, education, economy, and human rights; environmental factors for domestic animals; and several societal services. The revised comprehensive Core Set contains 98 ICF codes: 18 body function codes; 47 activities and participation codes; and 33 environmental factor codes. Extensive changes were also made to the age-appropriate brief Core Sets to allow their independent use in research and clinical practice. INTERPRETATION: Although substantially expanded, the revised ICF Core Sets better reflect the lived experience of individuals with ADHD and clinical implementation preferences than the initial sets. We recommend further feasibility and validation studies of these Core Sets with the goal of optimizing their acceptance and practicability, and strengthening their evidence base.

The Methodological Quality and Intervention Fidelity of Randomised Controlled Trials Evaluating Social Skills Group Programs in Autistic Adolescents: A Systematic Review and Meta-analysis.

A systematic review and meta-analysis were utilised to explore the methodological quality, program fidelity, and efficacy of social skills group programs (SSGPs) aiming to support autistic adolescents in navigating their everyday social worlds. The study evaluated the methodological quality and theoretical fidelity of studies, with a random effect meta-analysis conducted to summarise the overall efficacy of SSGP and its effect on social communication and interaction, behavioural/emotional challenges, adaptive functioning, and autism characteristics. Although findings from the 18 identified studies indicated an adjusted medium overall effect with these programs successfully supporting autistic adolescents' socialisation needs (g = 0. 60, p < 0.001), most studies demonstrated medium to low program fidelity despite their good methodological quality. Given the significant heterogeneity of SSGPs and variations in the design and measurement frameworks of efficacy studies, understanding the generalisability of the findings of this research is unclear.

Mindfulness-based stress reduction for autistic adults: A feasibility study in an outpatient context.

LAY ABSTRACT: Autistic adults report high stress levels and difficulties dealing with everyday stressors. Mindfulness-based stress reduction groups aim to help regulate stress responses. We asked 50 autistic adults, without intellectual disability, to participate in a study of mindfulness-based stress reduction. The group program was made accessible through clear group leader communication and good program predictability, as well as reduced exposure to disturbing sensory stimuli. The mindfulness and yoga based exercises from the original mindfulness-based stress reduction program were included. The participants were positive and would even recommend an autistic friend to participate in a mindfulness-based stress reduction group. They reported that mindfulness-based stress reduction could lower symptoms of stress and improved stress coping. We still need to investigate these effects further in larger studies. The findings of this work show that mindfulness-based stress reduction groups can be adapted for autistic adults and that the participants overall were positive to the intervention and the group format.

Parent Training Tailored to Parents With ADHD: Development of the Improving Parenting Skills Adult ADHD (IPSA) Program.

OBJECTIVE: To describe the development of the Improving Parenting Skills Adult ADHD (IPSA) parent training (PT) program, designed for parents with ADHD. METHOD: IPSA was developed using an iterative co-creation approach, involving parents with ADHD from the initial knowledge mobilization phase onwards. The program prototype was evaluated by 16 parents with ADHD, in an open trial of program feasibility. RESULTS: IPSA was deemed feasible in terms of acceptability and levels of active participation, with no evidence of unintended harm. All but one participant completed the program, attending on average 84% of sessions. Pre-to-post within-group comparisons of targeted skills and outcomes revealed changes in the expected direction regarding, for example, use of introduced parenting skills (Cohen's d = 1.3). CONCLUSION: The program prototype was found acceptable, accessible, and safe. Findings support the potential value of adapting PT protocols for parents with ADHD and warrant further evaluation of IPSA in a randomized controlled trial.

From Symptomatology to Functioning - Applying the ICF to Autism Measures to Facilitate Neurodiversity-Affirmative Data Harmonization.

PURPOSE: A considerable number of screening and diagnostic tools for autism exist, but variability in these measures presents challenges to data harmonization and the comparability and generalizability of findings. At the same time, there is a movement away from autism symptomatology to stances that capture heterogeneity and appreciate diversity. The International Classification of Functioning, Disability and Health (ICF) provides a classification system that can support content harmonization of different screening and diagnostic tools for autism while enabling the translation of diagnostic information into functioning. METHOD: Here we linked commonly used screening and diagnostic measures within the field of autism to the ICF to facilitate the unification of data obtained from these measures. RESULTS: As expected, screening and diagnostic measures primarily focus on body functions and activities and participation domains of the ICF, and much less on environmental factors, reflecting biomedical and adaptive behavior operationalizations of autism derived from diagnostic manuals. CONCLUSION: By translating symptomology-based information to the continuous and diagnostically neutral view of functioning, the ICF linking presented here may provide a means to harmonize measures of autism characteristics while enabling diagnostic information to be re-examined through a more neurodiversity-affirmative lens.

A Practical Framework for Delivering Strength-Based Technology Clubs for Autistic Adolescents.

Autistic individuals experience poor vocational outcomes internationally. Transition planning and interventions during adolescence may assist in improving outcomes in adulthood. Strength-based technology clubs show promise in improving outcomes for autistic adolescents by developing skills specific to the Information and Communication Technology industry, and fostering positive traits, such as self-determination. Although strength-based technology clubs have been examined with autistic adolescents, to date, no framework has been proposed to underpin their design and delivery. In this conceptual analysis, we propose a practical framework for delivering strength-based technology clubs for autistic adolescents. The framework builds on work from a previous systematic review of qualitative research and a realist evaluation study of technology clubs for autistic adolescents, combined with theoretical understandings from three health models. The new framework comprised the components of interests, value, autonomy, and requirements, forming the acronym IVAR. Interests refer to strategies drawing on adolescents' areas of interest. Value represents a culture of valuing autistic adolescents as individuals for their unique strengths and skills. Autonomy refers to providing opportunities for adolescents to make decisions, and Requirements refers to aspects of the social and physical environment. Practical recommendations of the framework are discussed, including design and delivery of future strength-based technology clubs, facilitator training, and design activities. The proposed IVAR framework may be useful in guiding the development of strength-based technology clubs. Future research is needed to validate the feasibility and efficacy of the IVAR framework in underpinning the delivery of strength-based technology clubs to autistic adolescents.

Why is this topic important?: The shift from adolescence to adulthood can be challenging for young people on the autism spectrum, and opportunities for employment may be limited. Modern approaches to improving employment outcomes for autistic youth highlight the importance of adopting a strength-based framework, such as matching the strengths and interests of autistic young people to future career pathways. The strengths of many autistic individuals are considered beneficial for employment in the Information and Communication Technology (ICT) sector. Strength-based technology clubs provide opportunities for autistic young people to develop their technological and social skills, meet role models working in the ICT industry, and help them to find work experience. What was the purpose of this article?: The purpose of this article was to develop a new framework for delivering strength-based technology clubs to autistic adolescents. The development of this framework was guided by the authors' earlier work in this area. What do the authors conclude?: The authors proposed a new framework for delivering strength-based technology clubs to autistic adolescents. The framework contains four components, creating the acronym IVAR: Interests, Value, Autonomy, and Requirements. The component, Interests, refers to strategies that draw on adolescents' areas of interest, such as changing activities to include adolescents' focused interests. Value represented a culture of valuing autistic adolescents as individuals for their unique strengths and skills. Autonomy refers to providing opportunities for adolescents to make decisions during the program, and Requirements refers to the design of the social and physical environment. What do the authors recommend for future research on this topic?: The authors recommend that future research should focus on exploring how practical and appropriate the IVAR framework is in supporting the delivery of strength-based technology clubs for autistic adolescents. The four IVAR components are potentially applicable to other areas of community focus to guide strength-based approaches more generally within autism research. How will this analysis help autistic adults now and in the future?: This analysis and discussion will provide researchers, autistic individuals, and the community with practical examples of how service providers can apply IVAR to design and deliver strength-based technology programs for autistic adolescents.

School absenteeism in autistic children and adolescents: A scoping review.

LAY ABSTRACT: Autistic children and teenagers are, on average, absent from school more than their peers. The aim of this review was to provide an overview of the research on absence from school in autistic learners in primary and secondary school, to help guide future research. We sifted through 4632 reports and found 42 studies with a focus on school absence and autism. We looked at how, when, and where the studies were conducted. We also summarized the results and outlined how absence was measured in the studies. Absence from school may lead to problems later in life, like incomplete education and unemployment. It is therefore important to know how common this problem is among autistic learners, what the reasons may be, and what type of support they need. The studies were from high-income countries and were mainly published in the last 10 years. Studies based on school registers from the United States and the United Kingdom clearly showed that children and teenagers with autism had higher risk of school absence than those without autism. Absence was often linked to problems with mental health or additional neurodevelopmental conditions. Several studies also showed that absence in autistic children and adolescents was related to problems in school, like bullying or lack of knowledge about autism. Support programs were only evaluated in a few studies with a small number of study participants. We conclude that more research is needed to better understand why autistic learners are absent and what they need to thrive in school.

Deficiency of the Heterogeneous Nuclear Ribonucleoprotein U locus leads to delayed hindbrain neurogenesis.

Genetic variants affecting Heterogeneous Nuclear Ribonucleoprotein U (HNRNPU) have been identified in several neurodevelopmental disorders (NDDs). HNRNPU is widely expressed in the human brain and shows the highest postnatal expression in the cerebellum. Recent studies have investigated the role of HNRNPU in cerebral cortical development, but the effects of HNRNPU deficiency on cerebellar development remain unknown. Here, we describe the molecular and cellular outcomes of HNRNPU locus deficiency during in vitro neural differentiation of patient-derived and isogenic neuroepithelial stem cells with a hindbrain profile. We demonstrate that HNRNPU deficiency leads to chromatin remodeling of A/B compartments, and transcriptional rewiring, partly by impacting exon inclusion during mRNA processing. Genomic regions affected by the chromatin restructuring and host genes of exon usage differences show a strong enrichment for genes implicated in epilepsies, intellectual disability, and autism. Lastly, we show that at the cellular level HNRNPU downregulation leads to an increased fraction of neural progenitors in the maturing neuronal population. We conclude that the HNRNPU locus is involved in delayed commitment of neural progenitors to differentiate in cell types with hindbrain profile.

No transfer of arousal from other's eyes in Williams syndrome.

Typically developing humans automatically synchronize their arousal levels, resulting in pupillary contagion, or spontaneous adaptation of pupil size to that of others. This phenomenon emerges in infancy and is believed to facilitate social interaction. Williams syndrome (WS) is a genetic condition characterized by a hyper-social personality and social interaction challenges. Pupillary contagion was examined in individuals with WS (n = 44), age-parallel-matched typically developing children and adults (n = 65), and infants (n = 79). Bayesian statistics were used. As a group, people with WS did not show pupillary contagion (Bayes factors supporting the null: 25-50) whereas control groups did. This suggests a very early emerging atypical developmental trajectory. In WS, higher pupillary contagion was associated with lower autistic symptoms of social communication. Diminished synchronization of arousal may explain why individuals with WS have social challenges, whereas synchronization of arousal is not a necessary correlate of high social motivation.

Genetic and environmental architecture of synaesthesia and its association with the autism spectrum-a twin study.

Synaesthesia is a sensory phenomenon where external stimuli, such as sounds or letters, trigger additional sensations (e.g. colours). Synaesthesia aggregates in families but its heritability is unknown. The phenomenon is more common in people on the autism spectrum compared with the general population and associated with higher autistic traits. Using classical twin design, we assessed the heritability of individual differences in self-reported synaesthesia and the genetic and environmental contributions to their association with autistic traits within a population twin cohort (n = 4262, age = 18 years). We estimated individual differences in synaesthesia to be heritable and influenced by environmental factors not shared between twins. The association between individual differences in synaesthesia and autistic traits was estimated to be predominantly under genetic influence and seemed to be mainly driven by non-social autistic traits (repetitive behaviours, restricted interests and attention to detail). Our study suggests that the link between synaesthesia and autism might reside in shared genetic causes, related to non-social autistic traits such as alterations in perception. Future studies building on these findings may attempt to identify specific groups of genes that influence both autism, synaesthesia and perception.

Infant responses to direct gaze and associations to autism: A live eye-tracking study.

LAY ABSTRACT: When other people look directly towards us, we often respond by looking back at them, and such direct-gaze responses are important for establishing eye contact. Atypical eye contact is common in autism, but how and when this aspect of autism develops is not well understood. Here, we studied whether how much and how quickly infants respond to others' direct gaze is associated with autism in toddlerhood. We did this by measuring direct-gaze responses in a playful social interaction using live eye tracking. The study included 169 infants, of whom 129 had an elevated likelihood of developing autism due to having a first-degree family member with the condition, and 40 with typical likelihood of autism. In the elevated likelihood group, 35 were diagnosed with autism spectrum disorder at 3 years of age, and 94 were not. The results showed that infants in all three groups tended to increase their looking towards the adult's face after the adult looked directly at them. However, neither how much nor how quickly the infants responded to direct gaze by looking back at the adult reliably differentiated the infants with or without subsequent autism. While infants in the elevated likelihood of autism and subsequent diagnosis group tended to look away quicker from faces with direct gaze than infants in the typical likelihood group, this measure did not differentiate between the two elevated likelihood groups. We interpret the results as supporting the view that atypical direct-gaze responses are not early markers of autism.

Mapping the link between socio-economic factors, autistic traits and mental health across different settings.

LAY ABSTRACT: Autistic individuals are more likely than non-autistic individuals to experience a mental health condition in their lifetime, and this includes externalising and internalising symptoms. We know very little about how different environments and family conditions impact these symptoms for autistic individuals. Improving our understanding of these relationships is important so that we can identify individuals who may be in greater need of support. In this article, we seek to improve our understanding of how environmental and family conditions impact externalising and internalising symptoms in autistic and non-autistic people. To do this, we conducted analyses with two cohorts in very different settings - in Europe and South Africa - to ensure our findings are globally representative. We used advanced statistical methods to establish environmental and family conditions that were similar to each other, and which could be combined into specific 'factors'. We found that four similar 'factors' could be identified in the two cohorts. These were distinguished by personal characteristics and environmental conditions of individuals, and were named Person Characteristics, Family System, Parental and Material Resources. Interestingly, just 'Family System' was associated with internalising and externalising symptoms, and this was the same in both cohorts. We also found that having high traits of autism impacted this relationship between Family System and mental health conditions with opposite directions in the two settings. These results show that characteristics in the Family System are associated with internalising and externalising symptoms, and autistic persons are particularly impacted, reinforcing the notion that family stressors are important to consider when implementing policy and practice related to improving the mental health of autistic people.

Understanding the utility of "Talk-to-Me" an online suicide prevention program for Australian university students.

BACKGROUND: Australian university students are at risk of experiencing poor mental health, being vulnerable to self-harm and suicidal ideation. AIM: "Talk-to-Me" is a suicide ideation prevention Massive open online course (MOOC) previously showing it can support Western Australian university students' knowledge of identifying and responding to suicide ideation in themselves and others. METHODS: A multi-site one-group pre-test/post-test design with a 12-week follow-up explored the efficacy of "Talk-to-Me" for university students Australia-wide, evaluating the influence of COVID-19 and location. Overall, 217 students (55% female; mage = 24.93 years [18, 60]) enrolled in this study from 2020 to 2021. Participants' responses to suicidal statements, mental health literacy, generalized self-efficacy, help-seeking behavior, and overall utility of the program were collected at baseline, post-MOOC (10 weeks from baseline) and 12-week follow-up. The effect of time and location interaction was explored using a random-effects regression model. RESULTS: Findings indicated significant improvement in participants' knowledge of positive mental health support strategies (ES = 0.42, p < 0.001) and recognizing appropriate responses to suicidal statements (ES = 0.37, p < 0.001) at 10-weeks, with further improvement at 12 weeks follow-up (ES = 0.47 and 0.46, p < 0.001). Students reported higher generalized self-efficacy at the 12-week follow-up compared to baseline (ES = 0.19, p = 0.03) and an increased tendency to seek professional help for mental health issues (ES = 0.22, p = 0.02). CONCLUSION: These findings provide preliminary evidence of the efficacy of the "Talk-to-Me" program in supporting university students across Australia to increase their suicide-related knowledge and skills, general self-efficacy, and overall mental fitness.

School-based social skills group training (SKOLKONTAKT™): a pilot randomized controlled trial.

Purpose: Differences in socio-communicative behaviors contribute to social challenges for autistic learners at school and, in turn, are associated with increased risks of educational underachievement, social exclusion, and mental health issues. Given that intervention delivery in natural contexts may enhance skills generalization, build support capacities in society, and have practical advantages for youth and families, SKOLKONTAKT™ has been adapted from the clinically based social skills group training KONTAKT™ for mainstream educational settings to mitigate these risks. Methods: A pilot, randomized controlled trial with active controls was conducted in a mainstream Swedish high school. Autistic learners and students with social skills challenges (N = 33; MAGE = 17.5) were randomized to SKOLKONTAKT™ (n = 17) or active control (n = 16). Efficacy was measured at post and follow-up (3 months) on social skills [Social Skills Group Assessment Questionnaire (SSGQ); primary outcome] by parent-, self-, and (masked) teacher-report as well as self-reported life quality and social goal attainment. Results: Despite COVID-19 challenges, 70.6% (n = 12) completed SKOLKONTAKT™, and 87.5% (n = 14) completed control groups. SKOLKONTAKT™ improved on a series of items on SSGQ as well as subjective life quality beyond controls. A larger proportion of social goals were attained, and side-effects were of little impact and proportionally fewer in SKOLKONTAKT™. Conclusion: SKOLKONTAKT™ is a safe, feasible, and promising intervention option for autistic learners in mainstream educational settings. A larger-scale study is desirable to confirm the effects identified in this pilot study.