Patterns of equipment use for autistic children in multi-sensory environments: Time spent with sensory equipment varies by sensory profile and intellectual ability.

LAY ABSTRACT: Multi-sensory environments, often called sensory rooms, are widely used with autistic children. However, we know very little about how autistic children choose to spend their time in multi-sensory environments. We also do not know how their equipment preferences relate to their individual characteristics such as their sensory differences, level of ability or general autistic behaviours. We measured the frequency and duration of visits to multi-sensory environment equipment of 41 autistic children during 5 min of free play. The bubble tube and touch, sound and light board were both highly popular, with the fibre optics and tactile board receiving less attention. The children displayed significantly more sensory seeking behaviours in the multi-sensory environment than sensory-defensive behaviours. These sensory seeking behaviours, as well as the sensory behaviours that their parents reported they showed in daily life, were associated with specific patterns of multi-sensory environment equipment use. Non-verbal ability was also associated with multi-sensory environment equipment use, but broader autistic behaviours were not. Our findings show that the multi-sensory environment equipment preferences of autistic children are related to individual differences in sensory behaviours and non-verbal ability. This information could be useful for teachers and other practitioners who want to know how best to use multi-sensory environments with autistic children.

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children.

Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school-aged Autistic children. Eighty-eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7- to 12-years) participated in this cross-sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child-rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well-being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.

Child and caregiver predictors of primary caregiver participation in families of school-aged Autistic children.

Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes.

The psychological impact of adult-onset craniopharyngioma: A qualitative study of the experience of patients and clinicians.

PURPOSE: Individuals who experience social and emotional difficulties struggle to maintain successful social relationships and incur an increased risk of developing mood disorders. These, in turn, have a significant impact on psychological and physical wellbeing. A small number of medical studies suggest that patients with adult-onset craniopharyngioma (AoC) report poorer quality of life, however, no in-depth psychological research has been carried out. The present study aimed to capture a rich understanding of whether patients with AoC experience a psychological impact from their diagnosis and whether psychological factors may contribute to a poorer quality of life. METHOD: Both patients with AoC and clinicians with experience of working with patients with AoC were invited to take part in a semi-structured interview. Participants were recruited from three geographically disperse National Health Service (NHS) units across the United Kingdom (UK). Eight patients and 10 clinicians took part in the study. Interviews were recorded and transcribed verbatim and analysed using inductive thematic analysis. RESULTS: Two key themes, with multiple subthemes, were identified: 1) Patients experience psychological impacts of AoC; and 2) Patients also experience common physical symptoms. CONCLUSIONS: Patients and clinicians recognised significant psychological impact as a result of AoC, and these impacts contributed to overall poorer quality of life. Crucially, both parties also felt that further research into psychological impact of AoC was both interesting and useful.

Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study.

PURPOSE: In prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent's participation and QoL. METHODS: Twenty primary caregivers (29-48 years, all female) of autistic children (7-11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19. RESULTS: Five themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic. CONCLUSION: The findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs.

The Sensory Observation Autism Rating Scale (SOAR): Developed using the PROMIS® framework.

Autistic people experience the sensory world differently, impacting behavior. First-hand accounts and group-based research have found that sensory differences impact a range of things including family life, anxiety, participation, and daily living. Early sensory differences are widely reported to be associated with a cascade of developmental difference, suggesting that early autism diagnosis and sensory mapping could enable the provision of supports to facilitate flourishing. However, appropriate measurement tools are not available as all rely on proxy report or are observation measures which include limited modalities or domains and require the administration of stimuli. Therefore, following the gold-standard recommendations for measurement development outlined by the PROMIS® framework, we created the Sensory Observation Autism Rating scale (SOAR). We identified sensory behaviors across all primary domains and modalities through an extensive autism-sensory literature review and from focus groups with autism stakeholders. The initial item bank was then refined by an expert panel and through video coding five-minutes of free play from Autism Diagnostic Observation Schedule assessments of 105 age- and gender-matched autistic and developmentally delayed children (aged 13-36 months; 38 female). An additional 25% of the sample were double coded to investigate interrater reliability. Observational data and expert review supported the reduction of the item bank to 37 items. We propose that the refined SOAR has excellent face and ecological validity, along with interrater reliability (Intraclass correlation = 0.87-0.99). Following further data collection and refinement, SOAR has promise to fully characterize sensory behaviors in autistic children and indicate useful supports.

Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review.

LAY ABSTRACT: We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.

The use of Multi-Sensory Environments with autistic children: Exploring the effect of having control of sensory changes.

LAY ABSTRACT: Multi-Sensory Environments (also called sensory or Snoezelen® rooms) are rooms that contain equipment which can create light, sound and touch experiences. Multi-Sensory Environments are often used with autistic children, particularly in schools, but there is no evidence for how best to use them. We investigated whether having control over the sensory equipment in the Multi-Sensory Environment affected how a group of 41 (8 female) autistic children aged 4-12 years behaved. We found that when autistic children could control the sensory equipment, they paid more attention and performed fewer repetitive and sensory behaviours. They also used less stereotyped speech, produced fewer vocalisations and showed lower levels of activity. Other behaviours were not affected. Our findings demonstrate that how a Multi-Sensory Environment is used can impact behaviour and that providing control of sensory changes to autistic children may help create better conditions for learning.

A sequential mixed-methods approach to exploring the experiences of practitioners who have worked in multi-sensory environments with autistic children.

BACKGROUND & AIMS: Multi-Sensory Environments (MSEs) are common in special-needs schools and are widely used with autistic pupils. In this exploratory sequential mixed-methods study, we explored the beliefs and experiences of practitioners who regularly use MSEs with autistic pupils. METHODS: Qualitative interviews with ten practitioners (9 female, aged 24-62 years) identified six themes reflecting beliefs about MSE use with autistic children. To explore wider relevance of these themes, codes from the themes were converted into a 28-item online survey. RESULTS: Qualitative themes included: (1) MSEs are perceived to benefit behaviour, attention and mood, (2) MSEs have distinct properties that facilitate benefits, (3) MSE use should be centred on the child's needs, (4) MSEs are most effective when the practitioner plays an active role, (5) MSEs can be used for teaching and learning, and (6) MSE use can present challenges. Responses to the survey (n = 102, 93 female, aged 21-68 years) generally showed good agreement with the original interviews, and there was modest evidence that MSE training affected beliefs about the benefits of MSE use. CONCLUSIONS & IMPLICATIONS: These results provide insight into possible benefits of MSE use for autistic children and are relevant when considering the development of practitioner guidelines.

A Multistate Trial of an Early Surveillance Program for Autism Within General Practices in Australia.

Background: The early detection of developmental conditions such as autism is vital to ensure children can access appropriate and timely evidence-based supports, services, and interventions. Children who have undetected developmental conditions early in life are more likely to develop later health, developmental, learning, and behavioral issues, which in turn can have a cumulative effect over the life course. Methods: The current protocol describes a multi-site, cluster randomized control trial comparing a developmental surveillance pathway for autism to usual care, using opportunistic visits to general practitioners (GPs). Units of randomization are GP clinics across two Australian states (New South Wales and Victoria), with thirty clinics within each state, each of which will aim to recruit approximately forty children aged between ~18- and 24-months, for a total of ~2,400 participants. Children will be randomized to two clusters; namely, an autism surveillance pathway (ASP) or surveillance as usual (SaU). The screening process for the ASP arm involves primary and secondary screenings for developmental concerns for autism, using both parent and GP reports and observations. Children in both arms who show signs of developmental concerns for autism will be offered a full developmental assessment by the research team at 24 months of age to determine the efficacy of developmental surveillance in successfully identifying children with autism. Trial Registration: The trial is registered with ANZCTR (ACTRN12619001200178) and reporting of the trial results will be according to recommendations in the CONSORT Statement.

Size Constancy is Preserved but Afterimages are Prolonged in Typical Individuals with Higher Degrees of Self-Reported Autistic Traits.

Deficits in perceptual constancies from early infancy have been proposed to contribute to autism and exacerbate its symptoms (Hellendoorn et al., Frontiers in Psychology 6:1-16, 2015). Here, we examined size constancy in adults from the general population (N = 106) with different levels of self-reported autistic traits using an approach based on negative afterimages. The afterimage strength, as indexed by duration and vividness, was also quantified. In opposition to the Hellendoorn and colleagues' model, we were unable to demonstrate any kind of relationship between abilities in size constancy and autistic traits. However, our results demonstrated that individuals with higher degrees of autistic traits experienced more persistent afterimages. We discuss possible retinal and post-retinal explanations for prolonged afterimages in people with higher levels of autistic traits.

Susceptibility to Optical Illusions Varies as a Function of the Autism-Spectrum Quotient but not in Ways Predicted by Local-Global Biases.

Individuals with autism spectrum disorder and those with autistic tendencies in non-clinical groups are thought to have a perceptual style privileging local details over global integration. We used 13 illusions to investigate this perceptual style in typically developing adults with various levels of autistic traits. Illusory susceptibility was entered into a principal-component analysis. Only one factor, consisting of the Shepard's tabletops and Square-diamond illusions, was found to have reduced susceptibility as a function of autistic traits. Given that only two illusions were affected and that these illusions depend mostly on the processing of within-object relational properties, we conclude there is something distinct about autistic-like perceptual functioning but not in ways predicted by a preference of local over global elements.