The experience of participation: eliciting the views of children on the autism spectrum.

PURPOSE: Children on the autism spectrum are reported to participate less in leisure activities than their peers. Little is known about what participation means for this group and the child's voice has been largely absent, partly due to methodological limitations. To address this limitation, alternative methods of eliciting children's perspectives are needed. The aim of this study is to elicit children's views about their participation experiences using a multi-method approach, and children's feedback on the method. METHODS: Four children on the autism spectrum (9-13 years) used a video recording device to collect data over a 1-week period on their participation in activities. The children recorded an in-the-moment narrative to describe the activity and their in-the-moment experiences. A follow-up individualised interview was conducted, allowing children to present their unique views on their activity participation and feedback. RESULTS: The children's differing perspectives identified participation as a transactional and dynamic process. Involvement was described as an individual and subjective experience, with participation influenced by personal, social, and physical factors. Children viewed the research experience positively. Recording while participating "in-the-moment" was challenging. CONCLUSION: The first-person perspective provided unique insights into the children's participation experiences. This approach has the potential to inform methodological practices.IMPLICATIONS FOR REHABILITATIONChildren can describe their experience of participation and identify internal and external factors that influence their participation.Participation is a transactional and dynamic process.Video provides a useful method for children to record their "in the moment" experiences.Children's video recordings provide a stimulus for interview discussions in both research and clinical practice.

Brief Report: Preliminary Finding for Using Weight-of-Evidence Graphical Information Sheets with Teachers to Correct Misinformation About Autism Practices.

The use of both empirically supported and unsupported practices by teachers is common with autistic students. In this study, strategies were used to reduce use of unsupported practices. First, specially-designed information sheets were shared with teachers about the evidence-base of two practices used in schools: one unsupported (sensory integration therapy [SIT]) and one supported (antecedent-based interventions [ABI]). A professional development program was then implemented to improve knowledge and use of ABI. The information sheets significantly reduced teacher support for SIT, however this was not maintained following professional development. Support for ABI remained unchanged across phases. The need for ongoing teacher professional development in replacing use of unsupported practices with more evidence-based approaches is discussed.

Protocol for a longitudinal study investigating the role of anxiety on academic outcomes in children on the autism spectrum.

BACKGROUND: Children on the autism spectrum are consistently reported to underachieve compared to ability. In typically developing children, anxiety is a strong predictor of poor school performance. Despite the high prevalence of anxiety disorders among children on the spectrum, the impact of their anxiety on academic achievement is under-researched. The main aim of this project is to determine the moderating role anxiety may have in the development of academic learning behaviours (academic enablers) in children on the spectrum. This project addresses a gap in knowledge about the possible associations between anxiety and academic achievement in children on the spectrum. Understanding these associations opens up the possibility of new intervention pathways to enhance academic outcomes through anxiety reduction/prevention. METHODS: This longitudinal study will aim to recruit 64 children on the spectrum aged 4-5 years and their parents. Information will be gathered from children, parents and teachers. Children will be randomly assigned to one of two conditions in order to experimentally manipulate anxiety levels in the sample: experimental (to receive an anxiety reduction/prevention program, N = 32) or control (no intervention/treatment as usual, N = 32). The primary outcome measures are child academic skills and enabling behaviours assessed using the Academic Competence Evaluation Scales and the WIAT-II. Anxiety will be assessed through parent and teacher report. Assessments will be conducted at baseline, post-experimental manipulation of anxiety, and within the first year of formal schooling. It is hypothesised that anxiety will moderate the relationship between autism characteristics and academic enablers. DISSEMINATION: Results will be disseminated through peer-reviewed manuscripts and conference presentations. Lay summaries will be provided to all participants and available on the research centre website.

"My cheeks get red and my brain gets scared": A computer assisted interview to explore experiences of anxiety in young children on the autism spectrum.

BACKGROUND: Anxiety symptoms are common in children on the autism spectrum and may be present at an early age. While a multi-informant approach is considered best practice in the assessment of anxiety, self-reports from young children on the autism spectrum are rarely included. AIMS: The aim of this study was to utilise a computer-assisted interview procedure incorporating visual prompts to elicit the viewpoints of children about their experiences of anxiety. METHODS AND PROCEDURES: Ten children aged 5-8 years who were diagnosed on the autism spectrum completed the interview. Directed content analysis was used to explore the data generated in the interview. OUTCOMES AND RESULTS: A wide range of situations that trigger anxiety, and responses to anxiety, were reported across the participant group. These responses may be unrecognised as anxiety by others. The children provided positive feedback on the use of the computer-assisted interview. CONCLUSIONS AND IMPLICATIONS: The child's own self-report can inform parents and professionals of the situations which make them more or less anxious and the behaviours that they use to communicate their anxiety in that specific situation. The use of a computer-assisted interview may be an effective method to support self-report of anxiety-related experiences for young children on the autism spectrum.

Brief Report: Perceived Evidence and Use of Autism Intervention Strategies in Early Intervention Providers.

Use of empirically unsupported practices is a challenge in the field of autism spectrum disorder (ASD). We explored whether attitudes and perceived evidence were linked to intended practice use in early intervention staff. Seventy-one participants completed ratings of the evidence base, current and future use of six ASD intervention practices, and reported attitudes to research and evidence-based practice. Participants reported greater use and rated the evidence base higher for the empirically supported practices. However, variability in accuracy of evidence base ratings was observed across individuals. Higher perceived evidence was linked to greater future use intentions for empirically supported and unsupported practices. The need for accurate information across practice types is highlighted. Self-report methodology limitations and future research directions are discussed.

Exploring Anxiety at Home, School, and in the Community Through Self-Report From Children on the Autism Spectrum.

Research investigating anxiety in children on the autism spectrum usually reports caregiver rather than self-report perspectives. This study aimed to document children's own descriptions of their anxiety symptomatology by combining profiles on a standardized autism-specific self-report measure of anxiety (ASC-ASD-C) with the answers from closed- and open-answer questions about anxiety across home, school, and community settings. Across the sample of 113 children on the spectrum aged 6-14 years, the two most frequently endorsed items on the ASC-ASD-C were from the Uncertainty and Performance Anxiety subscales, and the least endorsed were both from the Anxious Arousal subscale. Almost all (96.5%) of the children on the spectrum reported experiencing anxiety in at least one setting, with 40.7% reporting anxiety in all three contexts (home, school, and community). Approximately half of the sample felt their anxiety goes unrecognized by others at school and almost 60% felt it was unrecognized by others when out in the community. The proportion of children reporting having someone to help reduce their anxiety differed across home (86%), school (76%), and community (45%) settings. This highlights the importance of understanding anxiety and its impact, not only within the context of autism but also for each particular child. Autism Res 2020, 13: 603-614. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: There has been a lot of research focusing on anxiety and autism, but most of it has used parent reports, rather than asking the child themselves. This study summarizes data from 113 children on the autism spectrum, aged 6-14 years. It reports the symptoms of anxiety that these children most and least commonly experience. The results suggest only 40-50% of children feel that others are able to recognize their anxiety at school and when out in the community, suggesting that more training is needed to help adults in these settings to recognize and support anxiety.

Predictors of Expressive Language Change for Children with Autism Spectrum Disorder Receiving AAC-Infused Comprehensive Intervention.

Comprehensive interventions for children with autism spectrum disorder (ASD) often incorporate augmentative and alternative communication (AAC); however, variability in outcomes exists even among children who access similar intervention. This study investigated predictors of expressive language change for 48 children with ASD aged 31 to 67 months receiving AAC-infused intervention. The relationships between participants' initial responses to AAC and expressive language change were examined. Commonly reported predictors (IQ, chronological age, ASD symptomatology) did not significantly predict expressive language change. AAC factors (visual attention, object play, word learning) entered at Step 2 of a hierarchical multiple regression, explained an additional 42% of the variance. The findings provide preliminary data on child characteristics associated with expressive language changes within AAC-infused comprehensive interventions.

Using self-report to explore the relationship between anxiety and quality of life in children on the autism spectrum.

Anxiety is now recognized as one of the most common conditions that co-occur with autism. While there has been increased research describing the typical and autism-specific anxiety symptomatology and assessing the effectiveness of potential interventions, there has been less research exploring the impact that elevated anxiety may have on an individual and their quality of life (QoL). This study aimed to explore the impact of anxiety on the QoL in children on the autism spectrum. Children and young adolescents on the spectrum were invited to participate in a self-report study measuring anxiety and health-related QoL (HRQoL). The sample consisted of 71 children, aged 6-13. Children who scored above the cut off for elevated anxiety on the autism-specific measure of anxiety (ASC-ASD) had poorer total HRQoL and poorer scores on the social, emotional, physical, and school functioning QoL domains. Regression analyses indicate that children's self-reported ratings of difficulties with uncertainty on the ASC-ASD predicted all domains of HRQoL, with higher levels of difficulty with uncertainty predicting poorer HRQoL. Elevated levels of anxious arousal were also predictive of poorer physical functioning. This study highlights the importance of exploring the impact of anxiety on individuals on the spectrum and suggests that using carefully planned interventions to reduce difficulties with uncertainty may be a potential way to work toward improving the QoL of children on the spectrum. Autism Res 2019, 12: 1505-1515. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Research has shown us that individuals on the autism spectrum are more likely to have poor "quality of life" or general well-being. Because many individuals with a diagnosis on the autism spectrum also receive a diagnosis of anxiety, this study looked at whether a child's autism symptoms or their anxiety have a bigger impact on their quality of life. Children on the autism spectrum completed questionnaires and the results showed us that one factor, difficulty with uncertainty, had the biggest impact on the child's quality of life.

Investigating the participation of children on the autism spectrum across home, school, and community: A longitudinal study.

BACKGROUND: The World Health Organization recognizes that meaningful participation in one's community empowers individuals. Children and adolescents on the autism spectrum consistently report lower participation than their typical peers in activities, and this appears to continue into adulthood. The aim of this study was to investigate the participation of children on the autism spectrum over a 3-year period across home, school, and community. METHOD: Caregivers of 84 participants aged 9-10 years at Year 1 completed the Participation and Environment Measure for Children and Youth (PEM-CY) at three annual data collection points. The PEM-CY is a 25-question measure of the child's level of involvement in home, school, and community activities. Distribution frequencies were calculated for each time point. RESULTS: Although participation in the majority of items across home, school, and community remained stable, the longitudinal data suggest that children change the types of socializing activities across time. Over the 3 years, there was a decline in physical activity (both organized and unstructured) and in participation in school activities. CONCLUSION: This decline in participation as children move into adolescence is concerning. Further, reduced participation at this phase of development may potentially limit future participation opportunities throughout adolescence and into adulthood. Further exploration of the participation trajectories of children on the autism spectrum is needed.

The Developmental Behaviour Checklist (DBC) Profile in Young Children on the Autism Spectrum: The Impact of Child and Family Factors.

High levels of emotional/behavioural difficulties are frequently reported in children on the autism spectrum. However, given the diversity in profiles, there is a need to explore such behaviours in relation to individual factors. Parents of 130 children aged 4-5 on the autism spectrum completed measures of behaviour and adaptive behaviour. Hierarchical multiple regressions explored child and family characteristics in relation to children's emotional/behavioural presentation. Different aspects of the behavioural profile were associated with different factors, with child autism characteristics, medication use, and parent mental health making significant unique contributions to a range of behavioural subscales. Understanding individual profiles beyond total scores is therefore needed to truly understand the emotional and behavioural profile of specific subgroups.

Evaluation of a template for countering misinformation-Real-world Autism treatment myth debunking.

Misinformation poses significant challenges to evidence-based practice. In the public health domain specifically, treatment misinformation can lead to opportunity costs or direct harm. Alas, attempts to debunk misinformation have proven sub-optimal, and have even been shown to "backfire", including increasing misperceptions. Thus, optimized debunking strategies have been developed to more effectively combat misinformation. The aim of this study was to test these strategies in a real-world setting, targeting misinformation about autism interventions. In the context of professional development training, we randomly assigned participants to an "optimized-debunking" or a "treatment-as-usual" training condition and compared support for non-empirically-supported treatments before, after, and six weeks following completion of online training. Results demonstrated greater benefits of optimized debunking immediately after training; thus, the implemented strategies can serve as a general and flexible debunking template. However, the effect was not sustained at follow-up, highlighting the need for further research into strategies for sustained change.

Profiles of vocalization change in children with autism receiving early intervention.

Children with autism spectrum disorder (ASD) commonly present with comorbid language impairment, negatively impacting their learning and participation across settings. Addressing these needs requires a detailed understanding of their communication trajectories. In this study, we used the language environment and analysis (LENA) system to examine possible changes in children's (a) vocalizations and (b) ratio of speech to nonspeech vocalizations over a 10-month period. Data for 23 children with ASD (17M, 6F; ages 32-67 months) were analyzed, including monthly 3-hr in-class recordings and standardized measures of language, cognition, and ASD characteristics. Using hierarchical generalized linear models, we found significant time-trends for child vocalizations (P ≤ 0.001) and the vocalization ratio (P = 0.02), reflecting a waxing and waning pattern. Children with higher expressive language scores (Mullen scales of early learning, Vineland adaptive behavior scales - 2nd Ed.) and nonverbal cognition (Mullen scales of early learning), and fewer ASD characteristics (social communication questionnaire) demonstrated greater increases in the vocalization ratio over time (P values 0.04-0.01). Children with greater language and cognition difficulties were the most vocal, but produced a higher proportion of nonspeech vocalizations. The results demonstrate that significant fluctuations, as opposed to linear increases, may be observed in children with ASD receiving intervention, highlighting the value of assessment at multiple time-points. In addition, the findings highlight the need to consider both the quantity (vocalization counts) and quality (ratio of speech to nonspeech vocalizations) when interpreting LENA data, with the latter appearing to provide a more robust measure of communication. Autism Research 2019, 12: 830-842. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY ABSTRACT: In this study, we examined possible changes in speech and nonspeech vocalizations in 23 children with autism attending a comprehensive early intervention program over a 10-month period. Contrary to our expectation, we observed a waxing and waning pattern of change in children's vocalizations over time, rather than a steady increase. We also found evidence to suggest that looking at the quality of children's vocalizations (i.e., the ratio of speech to nonspeech vocalizations) provides a more accurate picture of children's development than simply looking at the quantity (i.e., how frequently they vocalize).

Exploring the Sensory Profiles of Children on the Autism Spectrum Using the Short Sensory Profile-2 (SSP-2).

The aim of this study was to identify sensory subtypes in children on the autism spectrum using the Short Sensory Profile-2 (SSP-2). Caregivers of children on the autism spectrum aged 4-11 years (n = 271) completed the SSP-2. Analysis using Dirichlet process mixture model identified a two-cluster model which provided the best solution to subtype sensory responses. Two distinct subtypes were identified: Uniformly elevated (67%) with high scores across all quadrants and Raised avoiding and sensitivity (33%) with raised scores in the avoiding and sensitivity quadrants. There were no differences between subtypes based on chronological age and autism characteristics measured using the social communication questionnaire (total score). Based on the SSP-2, children were reported to experience differences in responses to sensory input, in particular in the area of sensitivity and avoiding.

Teacher responses to anxiety-related behaviours in students on the autism spectrum.

BACKGROUND: At least 50% of students on the autism spectrum experience clinical or subclinical levels of anxiety but there is scant research on how teachers respond to anxiety in children on the spectrum. AIMS: To compare teacher responses to anxiety-related behaviour in students who do and do not have a diagnosis on the spectrum using the Teacher Responses to Anxiety in Children (TRAC). METHODS AND PROCEDURES: Teachers (N = 64), predominantly from mainstream primary schools, completed an online survey comprised of a demographic questionnaire and two versions of the TRAC, one for students without autism and one for students with autism. OUTCOMES AND RESULTS: Teachers report differences in the way they would likely respond to anxiety-related behaviours observed in students with and without autism. Teachers reported being more likely to use anxiety-promoting responses for students with autism who are showing behaviours indicative of general and separation anxiety, but not when they are showing behaviours indicative of social anxiety. Whilst there was no significant difference in the overall likelihood of use of autonomy-promoting responses between groups, there were differences in the likelihood of using specific autonomy-promoting responses dependent upon diagnosis and type of anxiety. CONCLUSIONS AND IMPLICATIONS: Teachers report they are likely to respond differently to anxiety-related behaviours of students on the autism spectrum but the impact of this on the behaviour of these students is yet to be determined. Professional development is a priority to increase teacher knowledge about anxiety-related behaviours in students with autism and the ways in which teachers' responses may promote or reduce anxiety and autonomy.

Anxiety-related symptomatology in young children on the autism spectrum.

Anxiety symptomatology is frequently reported in autistic children, and the prevalence of anxiety disorder is estimated at around 40%. However, most studies have focused upon children of age 8 years or above, so little is known about early signs of anxiety in younger children with autism. This study sought to describe anxiety-related symptomatology in 95 5- to 6-year-old autistic children using the Anxiety Scale for Children with Autism Spectrum Disorder. Wide variability was found in levels of symptomatology with the most frequently reported items within the 'uncertainty' subscale and the least frequently reported items in the 'anxious arousal' subscale. Comparisons of those with scores less than or greater than 70 on adaptive behaviour suggests some influence of ability on presentation of anxiety-related symptomatology.

Staff views on supporting evidence based practice for children with ASD.

PURPOSE: A variety of empirically supported interventions are available for children with autism spectrum disorder (ASD), but previous research suggests that their selection and use within an evidence-based practice (EBP) framework in clinical settings is challenging. To date, research has primarily focused on identifying individual, organisational, and contextual barriers to EBP rather than identifying collaborative solutions to these barriers through consultation with staff. The aim of our study was to explore staff views on supporting EBP in their work with children with ASD. MATERIALS AND METHODS: We conducted five focus groups involving 29 professional (e.g., speech pathologists, teachers), paraprofessional (e.g., childcare workers), and managerial staff to explore their views. Audio recordings were transcribed verbatim and analysed using thematic analysis. RESULTS: Two central themes, comprising six categories, emerged to account for the participants' views. Initiative and Effort accounted for the range of creative strategies staff had developed to support their engagement in EBP. They also expressed the need for A Better Way involving organisational-wide support such as this engagement, including peer-to-peer mentoring. CONCLUSIONS: The findings suggest that an organisational-wide model to support engagement in EBP, with peer-to-peer mentoring at its foundation, may provide a desirable, ecologically valid, and acceptable model. Implications for Rehabilitation Clinicians and educators recognise the importance of evidence-based practice. Efforts to support evidence-based practice have focused mostly on access to research evidence. Clinicians and educators in this study were developing their own strategies based on intuition. They identified a need for organisation-wide approaches to supporting evidence-based practice. Peer-to-peer mentoring appears to be an acceptable and viable strategy.

Parent descriptions of the presentation and management of anxiousness in children on the autism spectrum.

The complex interaction between anxiety and autism has led to debate about the presentation of anxiety in individuals on the spectrum and questions about the extent to which traditional checklists assess the entire range of symptomatology. Moreover, studies to date have not explored how the presentation of anxiety may differ between settings. Through a combination of open-ended questions, closed questions and standardised measures, parents of 173 children (aged 6-13) on the autism spectrum provided (1) descriptors of their child's anxiety at home, school and in the community and (2) strategies used to reduce their child's anxiety in each setting. Over half (52.6%) felt their child was anxious at home, 77.6% at school and 76.2% in the community. Parents reported differing presentations of anxiety between settings, with the majority of descriptions relating to observable, behavioural changes (e.g. hides/shuts down, repetitive behaviours) rather than cognitive or physiological signs. Parents also reported using different strategies across settings. The use of open-ended questions allowed the identification of signs of anxiety not explored within traditional questionnaires and highlighted the potential for signs to vary across settings. This knowledge is critical to inform the development or adaptations of anxiety measures and interventions.

Empirically Supported Treatments for Students with Autism: General Education Teacher Knowledge, Use, and Social Validity Ratings.

Objective: To examine teachers' knowledge and use of empirically supported treatments (ESTs) for children with autism spectrum disorder (ASD), and the extent to which they deem them socially valid in general education settings. Method: Totally, 155 general education teachers completed an online survey examining knowledge, use, and perceived social validity of ESTs targeting school readiness skills. Sources of information accessed and the relationship of knowledge, use, and social validity with demographic variables were investigated. Results: Teachers reported knowledge of, and were using, all ESTs. ESTs were used more frequently than non-ESTs. Knowledge, use, and social validity of ESTs were strongly associated. Teachers reported accessing a range of sources of information, with varying degrees of trust placed in these sources. Conclusion: Teachers' knowledge of available ESTs for children with ASD is linked to their use. Increasing awareness of social validity of ESTs, and how they can be successfully translated into classroom settings will influence uptake.

School-related anxiety symptomatology in a community sample of primary-school-aged children on the autism spectrum.

Although it is recognized that the prevalence of anxiety is elevated in children with autism spectrum disorder, there has been very limited research exploring such anxiety in school contexts. As a result, there is limited detailed information for teachers or educators on how anxiety in autism may present in the school setting for children on the autism spectrum. The aims of this study were to (a) report the profile of results on a measure of school anxiety in a community sample of children on the autism spectrum, (b) investigate whether scores on this measure differed with child variables or enrollment into a mainstream or special school, and (c) document the level of agreement between teacher-reported and parent-reported anxiety symptoms. Teachers of 92 children aged 5-12 completed a questionnaire pack including the School Anxiety Scale-Teacher Rating (SAS-TR). Elevated levels of anxiety (above the SAS-TR total anxiety clinical cut-off) were noted in 21.7% of the sample, with a larger proportion of children scoring above the generalized anxiety cut-off (27.2%) than the social anxiety cut-off (14.1%). Older participants (U = 744, p = .02, η2 = 0.06) and those attending mainstream schools (U = 661, p = .02, η2 = 0.06) had significantly higher scores on the generalized, but not the social, anxiety subscales, with effect sizes suggesting a medium effect. The results highlight the need for further, more detailed research into the presentation and impact of school anxiety in children with autism attending both mainstream and special schools.

Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review.

AIM: We aimed to identify measures used to assess the participation of disabled children and to map the measures' content to the family of participation-related constructs (fPRC) to inform future research and practice. METHOD: Six databases were searched to identify measures used to assess participation in health, psychology, and education research. Included studies involved children aged 0 to 18 years with a permanent impairment or developmental disability and reported use of a quantitative measure of participation. A second search sought relevant literature about each identified measure (including published manuals) to allow a comprehensive understanding of the measure. Measurement constructs of frequently reported measures were then mapped to the fPRC. RESULTS: From an initial yield of 32 767 articles, 578 reported one or more of 118 participation measures. Of these, 51 measures were reported in more than one article (our criterion) and were therefore eligible for mapping to the fPRC. Twenty-one measures quantified aspects of participation attendance, 10 quantified aspects of involvement as discrete scales, and four quantified attendance and involvement in a manner that could not be separated. INTERPRETATION: Improved understanding of participation and its related constructs is developing rapidly; thoughtful selection of measures in research is critical to further our knowledge base. WHAT THIS PAPER ADDS: The fPRC can support our rapidly evolving and expanding understanding of participation. Instruments selected to measure participation do not always align with emerging concepts. Matching research aims to a chosen measure's content will improve understanding of participation. Opportunities exist to develop validated participation measures, especially self-reported measures of involvement.