Application of the international classification of functioning, disability, and health in autism and attention-deficit hyperactivity disorder: A scoping review.

LAY ABSTRACT: The International Classification of Functioning, Disability, and Health (ICF) is a framework designed by the World Health Organization (WHO) to help different sectors, such as healthcare, social services, education, and policy, understand how people with health-related issues function (do the things they want to and need to do) in their daily lives. This framework has also been used to guide clinical practice and research in autism and attention-deficit hyperactivity disorder (ADHD). To make it more practical, shorter versions of the ICF called Core Sets have been developed. We wanted to explore how the ICF and the ICF Core Sets have been used in research relating to autism and ADHD. We looked at the research that had been previously published on this topic by conducting a systematic search and review. Seventy-eight studies meeting our criteria were included in our review. Results show that the ICF has been applied in many ways across various contexts. However, most of the research has focused on autism, mainly involving children. The review highlights that although the ICF was used in some studies, the underlying philosophies of the framework were not always followed. The medical perspective still influenced the way research was done and interpreted. Nevertheless, using the ICF in the right way can help shift research on neurodevelopmental conditions like autism and ADHD toward a more holistic approach, moving away from solely focusing on medical aspects.

Resilience in the face of neurodivergence: A scoping review of resilience and factors promoting positive outcomes.

Neurodivergent individuals, including a range of conditions impacting neurological function, are at an increased likelihood of poor life outcomes, such as in functional adaptation, mental health, and well-being. Yet, many live meaningful and fulfilling lives. Resilience may provide some explanation for the heterogeneity in outcomes observed in neurodivergent populations. We conducted a scoping review embedded in a neurodiversity-affirmative approach to provide an understanding of resilience in neurodivergent populations. A total of 176 articles were included in this review and were synthesized using a two-phased process. First, findings were synthesized narratively to examine how resilience has been conceptualized and explored in neurodivergent populations. Second, to identify the bio-psycho-social factors important for resilience in neurodivergent individuals, we converted concepts identified in articles to the nomenclature of the World Health Organizations' International Classification of Functioning, Disability and Health (ICF) using a standardized linking process. We find considerable variability in how resilience is conceptualized and measured in neurodivergent populations. We identified 83 unique ICF categories representing resilience factors, of which only 20 appeared in more than 5% of the articles. Identified ICF categories highlight the importance of support systems such as families and friends, community participation and acceptance, and individual capabilities for resilience.

Motivation to participate in structured physical activity for autistic youth: A systematic scoping review.

LAY ABSTRACT: Autistic youth participate less in physical education classes and organised sport than their neurotypical peers. We conducted a review of existing studies to investigate what is known about what motivates (and does not motivate) autistic youth to take part in structured physical activities. We systematically searched electronic databases and found 18 publications that met the criteria to be included in this review. Data from these studies were extracted and mapped to the self-determination theory to identify factors that support (or undermine) motivation for autistic youth. We also discussed the findings with autistic individuals and other relevant stakeholders to discover how the review related to their experiences. Our results found competence (youth feeling competent in their athletic and social skills and abilities) to be the most reported psychological need impacting motivation for autistic youth. Intrinsic motivation (participating for enjoyment and satisfaction) was the most common facilitator of motivation. Autism-specific themes outside of the self-determination theory were mapped inductively, and we found that the sensory environment was a prominent theme reported to influence the motivation of autistic youth not covered by the self-determination theory. The findings of this review suggest that supporting the psychological needs of autistic youth can foster motivation to engage in physical activity, although how these needs are met can differ from their neurotypical peers. Future research should examine motivational factors that support engagement in structured physical activities through the lens of autistic youth and their experiences.

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 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.

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.

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.

Safe transport of children with disabilities and medical conditions: Caregiver experiences.

BACKGROUND: Road vehicle transportation is essential to support community access and participation for all children. However, little is known about the transport patterns of children with disabilities and medical conditions and their caregivers' experiences supporting them to be transported safely in road vehicles in Australia. AIM: To understand the transport needs of children with disabilities and medical conditions and the transport needs of their caregivers. MATERIALS AND METHODS: A large-scale national survey was undertaken online to explore the experiences and perspectives of 193 caregivers, identifying the challenges and needs associated with providing and supporting safe road transportation for their children. RESULTS: Caregivers believed their child was missing out on participating in everyday life due to their transportation needs, with caregivers experiencing multiple challenges and barriers to transporting their child safely. CONCLUSIONS AND SIGNIFICANCE: There is a need to provide knowledge and support to caregivers who are primarily responsible for the safe transportation of their children with disabilities and medical conditions.

What Are You Worried About? Content and Extent of Worry in Autistic Adults.

Autistic adults commonly experience anxiety and worry, although knowledge on how worry presents and the content, extent, and experiences among autistic adults is limited. A convergent parallel mixed-methods approach was used to explore the presentation and experiences of worry in autistic and non-autistic adults. Quantitative surveys were used to compare the content and extent of worry in autistic adults to non-autistic adults, with semi-structured interviews also conducted with autistic adults to gain a deeper understanding of the experiences, impacts and content of worry in autistic adults. Findings indicated that autistic adults demonstrated clinically significant levels of worry which were substantially higher than non-autistic adults. Autistic adults described worry as a cycle of negative thoughts impacting their daily life. Findings indicate that autistic adults may worry more than non-autistic adults, impacting on participation in activities of daily living, sleep, and mental health.

"He Sees his Autism as a Strength, Not a Deficit Now": A Repeated Cross-Sectional Study Investigating the Impact of Strengths-Based Programs on Autistic Adolescents.

Recent studies have reported that strengths-based programs, leveraging autistic adolescents' abilities and interests, could improve their skills and facilitate social engagement. However, little is known about the long-term impact of strengths-based approaches. This study aimed to explore the long-term outcomes of community strengths-based programs designed to support autistic adolescents in developing interests and skills in Science, Technology, Engineering, Arts, and Mathematics (STEAM) and the factors influencing their participation in these programs. A repeated cross-sectional survey study over three years recruited 52 parents in 2018, 52 parents in 2019, and 38 parents in 2020. Results highlighted the positive impact of these programs on autistic adolescents' health and well-being, social relationships and interactions, self-confidence and self-esteem, sense of belonging, and activities and participation. Five key elements influencing participation included the enthusiasm of the participants, their self-perception, the approach of the programs, the learning environment, and the attitudes of the mentors. This study implies that strengths-based approaches to intervention and support for autistic adolescents in a supported environment are a social model solution that could potentially have positive participant outcomes. Findings from this study could provide a framework underpinning future strengths-based interventions.

Exploration of caregiver experiences of reported first signs of autism.

AIM: This study explored caregiver-reported first signs of autism and caregiver experiences of reporting these signs to health professionals using a multiple methods approach. BACKGROUND: Within the Australian context, children who have been diagnosed with autism represent a significant proportion of individuals requiring access to disability services. Due to the importance of accessing early intervention services to support future outcomes, it is vital that first signs are noticed, reported, and the diagnosis process begun as soon as possible. METHOD: Phase 1 of the study included a secondary analysis of a survey of caregivers, while phase 2 consisted of focus groups of caregivers of children on the autism spectrum. RESULTS: Survey data indicated that most children were aged 12-18 months when first signs were noticed, with first signs noticed earlier in females than males. Children were age 2-6 years when caregivers sought advice and received a diagnosis. Uncertainty and a lack of information often left caregivers feeling frustrated and under-supported when seeking advice and diagnosis. Despite first signs being recognised early by caregivers, barriers to information and seeking help and support resulted in significant delays in receiving a diagnosis. CONCLUSIONS: The study provides valuable consideration of the caregiver perspective regarding reported first signs of autism and the additional challenges faced by caregivers living in regional and rural areas. By being more informed of what caregivers first notice, health professionals may also be able to provide better support and advice to caregivers in regard to access to diagnosis and early intervention services.

Realist evaluation of a transdisciplinary mealtime management service for autistic children.

LAY ABSTRACT: Mealtimes and eating can be difficult for autistic children. A service where different professions work together is required to address the varied and complex mealtime difficulties of autistic children. Little is known about what is needed for such services to be effective. We interviewed six caregivers of autistic children who were engaged in a mealtime service and 10 therapists who are involved in delivering the service to understand their perspectives on the factors that were driving the effectiveness of the mealtime service. We found that different health professionals from different disciplines working together, focusing on adapting intervention to the child and family and managing expectations of the caregiver were important in contributing to outcomes of the mealtime service. The findings of this study can be used to inform the development of more effective interventions and services to support the well-being and development of autistic children.

Preventing suicide in post-secondary students: a scoping review of suicide prevention programs.

Suicide among students enrolled in post-secondary education, including university or college, is a major public health concern. Previous research has examined the effectiveness of suicide prevention programs for this population. However, the effective elements of these interventions remain unknown. This study reviewed the literature on suicide prevention programs for post-secondary students, exploring and identifying those elements likely contributing to their effectiveness. A scoping review process was undertaken exploring suicide prevention programs for post-secondary students. Methodological quality of the articles was assessed, and content analysis was used to explore the programs and their effective elements. Twenty seven articles were included in this review, covering a variety of approaches. Gatekeeper training programs were the most common type of suicide prevention program. Programs for post-secondary students may be effective in improving student rates of engagement with mental health services and were associated with greater knowledge, and help-seeking attitudes and behaviors, and gatekeeper-related outcomes. While evidence was found supporting the effectiveness of some interventions such as gatekeeper programs to influence suicide-related knowledge, attitudes and behaviour, further and more rigorous research surrounding suicide prevention programs for post-secondary students is required, with a particular emphasis on student outcomes.

The efficacy of the "Talk-to-Me" suicide prevention and mental health education program for tertiary students: a crossover randomised control trial.

Despite suicide ideation being one of the most frequently reported health issues impacting tertiary students, there is a paucity of research evaluating the efficacy of preventive interventions aimed at improving mental health outcomes for students studying at two tertiary institutes. The current study evaluated the efficacy of the "Talk-to-Me" Mass Open Online Course (MOOC) in improving tertiary students' abilities to support the mental health of themselves and their peers via a randomised controlled trial design, comparing them to a waitlist control group. Overall, 129 tertiary students (M = 25.22 years, SD = 7.43; 80% female) undertaking a health science or education course at two Western Australian universities were randomly allocated to either "Talk-to-Me" (n = 66) or waitlist control (n = 63) groups. The participants' responses to suicidal statements (primary outcome), knowledge of mental health, generalised self-efficacy, coping skills, and overall utility of the program (secondary outcomes) were collected at three timepoints (baseline 10-weeks and 24-weeks from baseline). Assessment time and group interaction were explored using a random-effects regression model, examining changes in the primary and secondary outcomes. Intention-to-treat analysis (N = 129) at 10-weeks demonstrated a significant improvement in generalised self-efficacy for "Talk-to-Me" compared to the control group (ES = 0.36, p = .04), with only the "Talk-to-Me" participants reporting increased knowledge in responding to suicidal ideation (primary outcome). This change was sustained for 24 weeks. Findings provide preliminary evidence suggesting that the "Talk-to-Me" MOOC can effectively improve tertiary students' mental health and knowledge of how to support themselves and others in distress. ACTRN12619000630112, registered 18-03-2019, anzctr.org.au.

Simulator assessment of innovative intersection designs on driver speeds and trajectories.

Intersections are over-represented in crash statistics internationally, suggesting that treatments targeting intersections could substantially improve road safety. Aligning with a Safe Systems approach, several innovative intersection configurations have been proposed. We evaluated the effectiveness of five designs on reducing speed and modifying conflict angles using a driving simulator. The designs were 1) cut-through, 2) modified restricted squircle, 3) unrestricted squircle, 4) raised approach, and 5) raised intersection. For the higher speed green light condition, speed reductions for vehicles travelling straight through the intersection were seen for all five innovative designs on approach to the intersection and at critical conflict points within the intersection. Within the intersection specifically, speed reductions ranged from 1) 7-8 km/h for the modified restricted squircle, 2) 12.5-16.5 km/h for the unrestricted squircle, raised approach, and raised intersection, and 3) 15-19 km/h for the cut-through. In contrast, speeds for drivers turning right were either not substantially reduced (modified restricted squircle, unrestricted squircle, and raised intersection) or were increased (raised approach and cut-through). Beneficial modification of conflict angles were also observed at conflict points for three of the five designs: cut-through, and two variations of the squircle design. Innovative intersection designs may be effective in reducing intersection crash risk by reducing speeds and conflict angles.

The "Talk-to-Me" MOOC intervention for suicide prevention and mental health education among tertiary students: Protocol of a multi-site cross-over randomised controlled trial.

INTRODUCTION: Mental health problems are common among tertiary education students, with concerning levels of suicide ideation frequently observed in this population. There is a need for evidence-based mental health education and suicide prevention programs designed to meet the specific needs of these students. The "Talk-to-Me" Mass Open Online Course (MOOC) is a strengths-based mental health education program underpinned by a six-phase model for managing a suicidal crisis. METHODS: To evaluate the efficacy of the "Talk-to-Me" MOOC in improving student knowledge of appropriate responses to suicide crisis via a randomised control trial (RCT) comparing tertiary education health science and education students attending the program to a waitlist control group. Overall, 170 will be screened and randomly allocated to either the "Talk-to-Me" MOOC or a waitlist control group, with data collection occurring at three-time points (baseline, 10-weeks and 24-weeks from baseline) over one year. The primary outcome will be participants' knowledge and responses to suicidal statements as measured by the Suicide Intervention Response Inventory. Secondary outcomes will be knowledge of mental health and coping skills as well as the overall utility of the program. CONCLUSIONS: This pragmatic RCT will demonstrate the efficacy of the "Talk-to-Me" MOOC in improving the students' ability to respond to suicidal and mental health concerns compared to the waitlist group. This design will enable rigorous evaluation of the "Talk-to-Me" MOOC, contributing to a greater understanding of the online-delivered safe-paced suicide prevention programs for tertiary students. Australian New Zealand Clinical Trials Registry (ANZCTR): #12619000630112.

Altered task induced functional brain networks and small-world properties in autism.

Introduction: Facial emotion recognition (FER) requires the integration of multi-dimensional information across various brain regions. Autistic individuals commonly experience difficulties in FER, a phenomenon often attributed to differences in brain connectivity. The nature of task-induced functional brain networks could provide insight into the neuromechanisms underlying FER difficulties in autism, however, to date, these mechanisms remain poorly understood. Methods: In this study, the task induced functional brain networks of 19 autistic and 19 gender, age, and IQ matched non-autistic individuals were examined during a complex FER task. Electroencephalogram (EEG)-based functional brain networks were examined, including the investigation of differences in the time-varying whole-brain functional networks and the exploration of the task induced small-world properties. Results: The results showed statistically significant differences in the task-induced functional networks between autistic and non-autistic adults. Autistic adults compared to non-autistic adults showed a significant shift in the connectivity-based FER processing from the lower to the higher EEG frequency bands. Discussion: These findings may provide evidence at a neural level for the notion that autistic individuals have a preference for bottom-up lower-level processing, or alterations in top-down global processing, potentially contributing to the FER difficulties observed in this population. Results also suggest that functional brain networks in autism show significantly altered task-induced whole-brain small-world properties as compared to non-autistic individuals during complex FER. This study motivates further investigation of the underlying networks-basis of altered emotion processing in autism.

"I Met Someone Like Me!": Autistic Adolescents and Their Parents' Experience of the KONTAKT® Social Skills Group Training.

This study captured the experiences of 35 autistic adolescents and their parents after completing a 16-session variant of social skills group training KONTAKT® (ACTRN12617001117303). Semi-structured interviews explored participants' and relatives' perceptions of KONTAKT® and associated social outcomes. Adolescents were classified as either high (HR, n = 23) or low (LR, n = 12) responders based on the primary outcome effects during the previous trial. Thematic analysis revealed that both HR and LR participants their parents were satisfied with KONTAKT®, noting consistent patterns of improvement in adolescents' social understanding, communication, relationships, and empowerment, although positive reports were more frequent among HR than LR groups. This study enhances the understanding of the impact of SSGT, which is key in improving their content, principles, and administration.

KONTAKT® social skills group training for Australian adolescents with autism spectrum disorder: a randomized controlled trial.

While there is a large body of evidence drawn from randomised controlled trials supporting the efficacy of SSGT in autistic adolescents, the control arms of these studies are almost exclusively treated either as usual or waitlist. Addressing this limitation, 90 verbal autistic adolescents (70% male) aged 12-17 years (M = 13.77, SD = 1.6) with IQ > 70 participated in this pragmatic two-armed randomised controlled trial design study evaluating the efficacy of sixteen 90-min sessions of SSGT KONTAKT® (n = 46) in comparison to a manualised interactive group cooking programme (n = 44) of equal dosage controlling for the potentially confounding effects of exposure to a social group context. The primary outcome was the adolescents' progress towards achieving their personally meaningful social goals at follow-up. Secondary outcomes were changes in autistic traits, quality of life, facial emotion recognition skills, social anxiety, and loneliness. Assessments were conducted at baseline, post intervention and 12-week follow-up. The interaction between time point and group allocation was investigated through a random-effects regression model (linear mixed model) to examine changes in the dependent outcomes. While intention-to-treat analysis (N = 90) demonstrated that both SSGT (ES = 1.36, p < .001) and active control (ES = 1.10, p < .001) groups made progress towards their personally meaningful social goals at follow-up, KONTAKT® participants demonstrated greater progress in social goal attainment than their peers in the active control group (ES = 0.35, p = .04). Findings suggest that KONTAKT® is efficacious in supporting autistic adolescents to achieve their personally meaningful social goals compared to other prosocial group activities.Trial registration: (1) Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12617001117303, registered 31 July 2017, anzctr.org.au; (2) ClinicalTrials.gov: NCT03294668 registered 22 September 2017, https://clinicaltrials.gov .

Cross-Cultural Adaptation to Australia of the KONTAKT© Social Skills Group Training Program for Youth with Autism Spectrum Disorder: A Feasibility Study.

This study investigated the feasibility and cultural validity of KONTAKT©, a manualised social skills group training, in improving the social functioning of adolescents with autism spectrum disorder (ASD). KONTAKT© was delivered to 17 adolescents (mage = 14.09, SDage = 1.43; 70% male) with ASD over sixteen 90 min sessions. A pre-test post-test design evaluated changes in personally meaningful social goals, symptom severity, quality of life, interpersonal efficacy, social anxiety, loneliness, and facial emotion recognition at pre, post and 3 months follow-up. Focus groups were conducted post intervention. Findings indicate that KONTAKT© may support Australian adolescents with ASD in achieving their personally meaningful social goals. This study resulted in finalisation of KONTAKT© in preparation for evaluation of its efficacy in a randomised controlled trial (Australian New Zealand Clinical Registry (ANZCTR): ACTRN12617001117303, ClinicalTrials.gov: NCT03294668).