Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities.

LAY ABSTRACT: Autistic young adults with intellectual disabilities want to be autonomous but are less autonomous than other people. However, they can be autonomous with appropriate support. We wanted to learn how we can support autistic adults with intellectual disabilities to be more autonomous. We designed our study with help from five autistic community partners to make sure the research was relevant to autistic people and would improve their lives. We talked with eight autistic young adults with intellectual disabilities about autonomy. We defined "talk" as verbal language, as well as non-verbal cues such as body language, facial expressions, vocalizations, and laughter. We did art projects and played games while we talked. We met in small groups over multiple sessions. Our participants told us that being autonomous meant being able to be themselves. They told us three main ways to support their autonomy: (1) having choice and control, (2) being able to communicate in their own way, and (3) being in a safe environment. Families, support staff, and caregivers can use this information to help autistic young adults with intellectual disabilities to be autonomous.

"It makes me a better person": The unique experiences of parenting multiple children who experience neurodevelopmental disability.

BACKGROUND: Much research has explored how raising a child with a neurodevelopmental disability influences parents' well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers' well-being and social participation. METHODS: Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach. RESULTS: Three themes were identified: 'Knowledge is power' described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. 'Shifts in wellbeing' acknowledged these mothers' exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. '(Dis)Connection and engagement with others' reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers' also experienced enhanced disability community and family connections, and a sense of meaning and purpose. CONCLUSIONS AND IMPLICATIONS: Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent's challenges, but also celebrate and draw on families' strengths and knowledge.

Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability.

Introduction: Self-determination is a fundamental human right positively related to quality of life. However, Autistic people are reported to be less self-determined than non-autistic people. We aimed to (1) understand what self-determination means to Autistic people from their perspective, (2) explore their perceptions of current barriers to being self-determined, and (3) learn from Autistic people about how they would like to be supported to be self-determined. Methods: Semi-structured interviews were done with 19 Autistic adults without co-occurring intellectual disability. Data were analyzed by three Autistic and two non-autistic researchers through an iterative process of data familiarization, coding, and theme development, informed by reflexive thematic analysis. Autistic Community Partners (ACP) were also engaged throughout the study, and provided substantive feedback on all methods and results. Results: Self-determination held the same meaning for Autistic people as non-autistic people. More specifically, participants discussed having the opportunity and support to make choices and decisions in life without unnecessary control from others. Experiences of self-determination were centered around: (1) lack of opportunity, influenced by ableist expectations and discrimination, and (2) executive processing differences that interfered with choice and decision-making. Desired areas of support related to providing opportunities to (1) make choices and exert autonomy, (2) be supported to unmask and be valued as one's authentic Autistic self, and (3) offering pragmatic support for executive processing differences. Conclusion: Autistic adults desire to be self-determined and can flourish with support, as they determine to be appropriate, which might look different from support commonly offered or sought by non-autistic people. Although individualized support was discussed, the ideal desired support was for an inclusive society that values and respects their neurodivergence, rather than imposing ableist expectations. An inclusive society is only achievable through reduced (or eliminated) stigma and prejudice against Autistic people.

Pattern of Visual-Motor Integration, Visual Perception, and Fine Motor Coordination Abilities in Children Being Assessed for Fetal Alcohol Spectrum Disorder.

OBJECTIVE: Motor skill assessment is part of the fetal alcohol spectrum disorder (FASD) multidisciplinary assessment. Some clinicians opt to exclude assessment of the subcomponents of visual-motor integration (visual perception and motor coordination), on the assumption that challenges will be revealed based on the assessment of visual-motor integration. The objective is to describe the visual-motor integration, visual perception, and fine motor coordination pattern of abilities in children with confirmed prenatal alcohol exposure being assessed for fetal alcohol spectrum disorder. METHODS: This cross-sectional study included 91 children (65 males; mean age: 10 years, 6 months SD = 2 years, 10 months) undergoing assessment for FASD. Friedman and Wilcoxon statistics were used to compare mean visual-motor integration, visual perception, and fine motor coordination percentiles from the Beery-Buktenica Developmental Test of Visual-Motor Integration, Sixth Edition (Beery-6). RESULTS: Children being assessed for FASD (n = 91) had the highest normative scores in visual perception, followed by visual-motor integration and fine motor coordination (mean percentiles (SD): 35.9 (24.9), 20.6 (18.3), and 13.8 (15.5), respectively) (χ 2 distribution = 46.909, p ≤ 0.001). CONCLUSION: Children being assessed for FASD experience more challenges with fine motor coordination compared with visual-motor integration and visual perception tasks. This pattern differs from the pattern established for the general population in which tasks that require visual-motor integration are more challenging than tasks that isolate visual perception and fine motor coordination. These results suggest that fine motor coordination should be included in FASD diagnostic assessments and considered as an area for intervention.

Influence of a Brief Autism Education Intervention on Peer Engagement and Inclusion At Mainstream Day Camps: A Mixed-Methods Pilot Study.

To explore the benefits of a brief autism education intervention on peer engagement and inclusion of autistic children at day camps. A convergent, parallel, two-arm (intervention/no intervention), non-randomized, mixed-methods design was used. The individualized, peer-directed, 5-10 min intervention included four components: (1) diagnostic label, (2) description and purpose of unique behaviors, (3) favorite activities and interests, and (4) strategies to engage. A timed-interval behavior-coding system was used to evaluate engagement between each autistic camper and their peers based on videos taken at camp (days 1, 2, 5). Interviews with campers and camp staff explored why changes in targeted outcomes may have occurred. Percent intervals in which the autistic campers were jointly engaged with peers improved in the intervention group (n = 10) and did not change in the control group (n = 5). A large between group intervention effect occurred by day 5 (Z = - 1.942, η2 = 0.29). Interviews (5 autistic campers, 34 peers, 18 staff) done on the last day of camp in the intervention group garnered three themes: (1) Changed behavioral attribution, (2) Knowledge facilitates understanding and engagement, and (3) (Mis)perceptions of increased inclusion. A brief educational intervention that includes individualized explanatory information and strengths-based strategies might improve peers' understanding of and social engagement with autistic children in community programs such as camps.

"Sensory in-Service": An Exploratory Evaluation of a Group-Based, Caregiver Intervention for Children with Sensory Processing Difficulties.

AIMS: To describe and evaluate the effectiveness of a group-based, caregiver education intervention on: (1) functional concerns for children with identified sensory processing difficulties, (2) caregiver knowledge of sensory processing and strategies to support their child, and (3) resources required. METHODS: Ninety-five caregivers of children referred to therapy because of sensory processing difficulties [72% male, mean age (SD) = 6.0 (2.3) years] participated in a structured, two-hour, group-based, caregiver education intervention, which included didactic information, group discussion, worksheets, and written resources. Canadian Occupational Performance Measure (COPM) performance and satisfaction scores evaluated changes in child function. A Caregiver Knowledge Questionnaire evaluated changes in caregivers' knowledge of sensory processing and strategies. Resources required were based on the total number of hours required for 1:1 versus group-based intervention. RESULTS: Statistically significant and clinically meaningful improvements were found for COPM performance (W = 108, p < .001; EF = 0.95) and satisfaction scores (W = 119.5, p < .001; EF = 0.94) and caregiver knowledge (W = 0.00, p<.001; EF = 1.00). Group-based intervention used 62% less time than 1:1 intervention. CONCLUSIONS: Group-based, caregiver education can be an effective way for therapists to meet demand and improve caregiver self-efficacy related to sensory processing difficulties.

A multi-center, pragmatic, effectiveness-implementation (hybrid I) cluster randomized controlled trial to evaluate a child-oriented goal-setting approach in paediatric rehabilitation (the ENGAGE approach): a study protocol.

BACKGROUND: Child-oriented goal-setting in pediatric rehabilitation may improve child motivation, engagement in therapy, child outcomes related to therapy, and service delivery efficiency. The primary objective of this trial is to determine the effectiveness of a principles-driven, child-focused approach to goal-setting, Enhancing Child Engagement in Goal-Setting (ENGAGE), on pediatric rehabilitation outcomes compared to usual practice. The three secondary objectives are to 1) compare costs and secondary outcomes of the ENGAGE approach to usual practice, 2) determine the influence of child, parent and therapist characteristics on child engagement in therapy and rehabilitation outcomes, and 3) identify barriers and facilitators to the implementation of ENGAGE. METHODS: This research protocol describes a pragmatic, multi-site, cluster, effectiveness-implementation (hybrid type 1 design) randomized controlled trial. Therapists (n = 12 clusters of two therapists) at participating sites (n = 6) will be randomized to 1) the ENGAGE intervention group, or 2) usual care (control) using a computer-generated, permuted-block randomization sequence with site as a stratification variable designed by a statistician (RR). Each therapist will recruit four children 5-12 years old with neurodevelopmental conditions (n = 96), who will receive ENGAGE or usual care, according to therapist group allocation. ENGAGE therapists will be trained to use a 'toolbox' of evidence-driven, theory-informed principles to optimize child and parent motivation, engagement in the goal-setting process, and performance feedback strategies. Outcomes include goal performance (primary outcome), engagement in therapy, functional abilities, participation, and parent and child quality of life. Qualitative interviews with children, parents, ENGAGE therapists, and managers will explore challenges to implementation and potential mitigation strategies. Mixed effects multiple linear regression models will be developed for each outcome to assess group differences adjusted for clustering. A cost-effectiveness analysis will combine cost and a measure of effectiveness into an incremental cost-effectiveness ratio. Qualitative data on implementation will be analyzed inductively (thematic analysis) and deductively using established implementation science frameworks. DISCUSSION: This study will evaluate the effects of collaborative goal-setting in pediatric rehabilitation and inform effective implementation of child-focused goal-setting practices. TRIAL REGISTRATION: NCT05017363 (registered August 23, 2021 on ClinicalTrials.gov).

Motor skills and intelligence in children with fetal alcohol spectrum disorder.

AIM: To determine the relationship between motor abilities and intelligence in children and young people with prenatal alcohol exposure (PAE) being assessed for fetal alcohol spectrum disorder (FASD). METHOD: This was a cross-sectional correlational study of children and young people with PAE being assessed for FASD. The relationship between motor abilities (Movement Assessment Battery for Children, Second Edition) and intelligence (Wechsler Intelligence Scale for Children, Fourth or Fifth Edition) was calculated using correlation and regression analyses. Attention and executive function were considered as potential confounding variables. RESULTS: The relationship between motor abilities and intelligence in 73 children and young people (48 males, 25 females; aged 6-17y, mean age 10y 5mo [SD 2y 9mo]) assessed for FASD was small and statistically non-significant (r=0.05, p=0.67). INTERPRETATION: The findings confirm that motor abilities and intelligence should be assessed separately when investigating an FASD diagnosis. Intelligence scores should not be used to estimate motor abilities, nor should they dictate when motor testing be completed. Assessing intelligence and motor domains separately will enhance diagnostic accuracy, identify the need for strategies or interventions to address functional motor skills, and further define the role of physiotherapy and occupational therapy in FASD assessment and intervention.

The influence of disclosure of an autism diagnosis on peer engagement and interactions for a child with autism in summer camps: a case study.

PURPOSE: Little research has evaluated how disclosure of an autism diagnosis influences peer engagement and understanding of children with autism in community recreation programs. This study describes outcomes of disclosing an autism diagnosis for a child with autism participating in mainstream, community summer camps. METHODS: This case study includes a 9-year-old boy diagnosed with autism who participated in two camps, one in which he disclosed and one in which he did not disclose. Quantitative data on peer engagement states and reciprocal interactions were coded through structured behavioral observation of video recorded on the first, second, and last day of each program. Qualitative interviews about perceived outcomes of disclosure were completed with the child with autism, camp leaders, and peers in the disclosure camp. RESULTS: Peer engagement and reciprocal interactions improved following the disclosure protocol and continued to improve on the final day of the camp, which was not observed in the non-disclosure camp. A key qualitative theme revealed that changed behavioral attribution was the main contributor to improved inclusion following disclosure. CONCLUSIONS: This study provides preliminary data to support that disclosure may be a simple intervention to improve peer engagement and understanding of children with autism in community programs.IMPLICATIONS FOR REHABILITATIONChildren with Autism Spectrum Disorder are at high risk of experiencing social exclusion, especially in community programs.A disclosure protocol (disclosure + explanation for behaviors) could be a simple intervention to facilitate peer acceptance and inclusion of children with autism, however this intervention has not been evaluated in a real life context.This study provides preliminary evidence to support the use of a simple disclosure protocol for families who want to disclose, within short-term community programs.