A parent-led intervention to reduce anxiety in autistic children with a severe to profound intellectual disability: protocol for the LADDERS pilot feasibility trial

Background There is a need for evidence-based approaches to reduce anxiety experienced by autistic children with severe to profound intellectual disability (ID). Avoidance of anxiety triggers, as a response to pronounced anxiety, occurs irrespective of age, background and neurodiversity. When avoidance is unhelpful, evidence-based anxiety reduction approaches aim to reduce it gradually (graded exposure), subsequently reducing anxiety. Combining graded exposure with emotional regulation techniques may be effective and acceptable for autistic children with severe to profound ID, if sensitive to needs and characteristics of autistic children. We have developed a 16-week, parent-led intervention (LADDERS) to reduce anxiety in this population of autistic children. LADDERS consists of psychoeducation, graded exposure-based tasks, and skills building, delivered utilising a person-centred approach. This study aims to assess whether LADDERS 1) reduces anxiety and 2) whether autistic children and parents find it acceptable and feasible. Method A single-site, multiple baseline, single case experimental study will be conducted. Participants will be parents of autistic children aged between 4-15 years. A minimum of 8 participants will be recruited through a research participant database, the Autistica Discover Network and social media. Once eligibility is confirmed, participants will be assessed at baseline, during the intervention and at a 2-month follow-up (week 24). The primary outcome measure will be a daily diary that assesses child anxiety. Discussion The study will provide preliminary evidence of whether LADDERS reduces anxiety in autistic children with severe to profound ID. Qualitative data from parents and child engagement will provide data on acceptability and feasibility.

Accounting for motion in fMRI: What part of the spectrum are we characterizing in autism spectrum disorder?

The exclusion of high-motion participants can reduce the impact of motion in functional Magnetic Resonance Imaging (fMRI) data. However, the exclusion of high-motion participants may change the distribution of clinically relevant variables in the study sample, and the resulting sample may not be representative of the population. Our goals are two-fold: 1) to document the biases introduced by common motion exclusion practices in functional connectivity research and 2) to introduce a framework to address these biases by treating excluded scans as a missing data problem. We use a study of autism spectrum disorder to illustrate the problem and the potential solution. We aggregated data from 545 children (8-13 years old) who participated in resting-state fMRI studies at Kennedy Krieger Institute (173 autistic and 372 typically developing) between 2007 and 2020. We found that autistic children were more likely to be excluded than typically developing children, with 29.1% and 16.1% of autistic and typically developing children excluded, respectively, using a lenient criterion and 80.8% and 59.8% with a stricter criterion. The resulting sample of autistic children with usable data tended to be older, have milder social deficits, better motor control, and higher intellectual ability than the original sample. These measures were also related to functional connectivity strength among children with usable data. This suggests that the generalizability of previous studies reporting naïve analyses (i.e., based only on participants with usable data) may be limited by the selection of older children with less severe clinical profiles because these children are better able to remain still during an rs-fMRI scan. We adapt doubly robust targeted minimum loss based estimation with an ensemble of machine learning algorithms to address these data losses and the resulting biases. The proposed approach selects more edges that differ in functional connectivity between autistic and typically developing children than the naïve approach, supporting this as a promising solution to improve the study of heterogeneous populations in which motion is common.

Parent, Teacher and Observational Reports of Emotional and Behavioral Problems in Young Autistic Children

Emotional and behavioral problems (EBPs) frequently occur in young autistic children. Discrepancies between parents and other informants are common but can lead to uncertainty in formulation, diagnosis and care planning. This study aimed to explore child and informant characteristics are associated with reported child EBPs across settings. Participants were 83 4–8-year-old autistic children and their parents and teachers in the Autism Spectrum Treatment and Resilience (ASTAR) study. Questionnaires of child EBPs were completed by parents and teachers, and self-reported parenting stress and wellbeing measures were obtained. An observation of parent–child/researcher-child interaction was also completed. Parents reported more EBPs than teachers and parent-teacher agreement was low, particularly for emotional problems. Greater parenting stress and being verbal was associated with more parent- but not teacher-reported EBPs. More observed behaviors that challenge were displayed by minimally verbal children. More parenting stress could be associated with the presence of more EBPs in the home; alternatively, parenting stress may confound reports. It is essential for assessments of EBPs in autistic children to take a multi-informant approach. Better understanding of the associations between informant characteristics and informant discrepancies of EBPs is needed.

Augmented Reality Mobile Application for Children with Autism : Stakeholders’ Acceptance and Thoughts

American Psychiatric Association defined autism spectrum disorder as a neurological disorder due to which a diagnosed child may face difficulty in social communication or have a repeated or restricted set of behaviors. Learners with autism are primarily visual strategy learners, and they tend to learn better through pictures and images. Due to their cognitive disabilities, most learners with autism struggle to acquire new vocabulary. There have been many inventions invented by researchers all over the world to help autistic children with their education; however, not much emphasis put on the interventions that can assist autistic children with their English vocabulary learning process. Hence, this study intends to investigate the stakeholders’ acceptance and thoughts on the use of augmented reality mobile applications for children with autism. This study is a qualitative research study where interviews are used as an instrument to gather stakeholders’ views on the usefulness of the designed and developed augmented reality technology mobile application. This study involved seven respondents who come from different backgrounds and in different field areas. The results have gathered that the designed and developed mobile application has the prospect of helping children with autism with their English language learning process. With further improvements, the designed and developed mobile application is believed to be able to help autistic children to learn English vocabulary in a more exciting yet meaningful manner and at the same time help to spark their interest in their English vocabulary language learning process.

Sufficient sleep duration in autistic children and the role of physical activity

Emerging evidence suggests that physical activity may be associated with improved sleep in autistic children. We aimed to determine whether physical activity associated with sufficient sleep duration in children and whether this association was modified by reported autism spectrum disorder (ASD) status. We analyzed existing data of children 6–17 years old whose caregivers completed the 2018 National Survey of Children’s Health (nonautistic N = 20,845; ASD N = 681). Logistic regression determined whether physical activity (days active in the past week) associated with sufficient sleep duration. Physical activity-by-ASD interactions were included to determine whether the association differed for autistic children. Physical activity-by-ASD-by-sex and physical activity-by-ASD-by-age-group interactions were also modeled. Physical activity was associated with increased odds of sufficient sleep duration (e.g. 0 days vs 4–6 days: odds ratio (OR) = 1.85; 95% confidence interval (CI): 1.48–2.32). We did not observe an overall statistically significant interaction between physical activity and reported ASD status; however, the positive association between physical activity and sufficient sleep duration was weaker in autistic children, especially those with more severe ASD, female autistic children, and autistic children ages 6–12 years old. In conclusion, physical activity is a promising approach to improve sufficient sleep duration but with nuanced findings in autistic children. Lay abstract Higher levels of physical activity may be associated with improved sleep in children, but this relationship is still being determined, especially in autistic children. In this study, we used existing data from the 2018 National Survey of Children’s Health. Caregivers of children 6–17 years old, including caregivers of autistic children, completed a questionnaire that included questions about physical activity (days active in the past week) and sleep duration. We then determined if children were obtaining the recommended hours of sleep for their age (i.e. sufficient sleep). We found that higher physical activity levels were associated with sufficient sleep duration, but this finding was weaker in autistic children. In particular, this association was not observed in autistic children with more severe autism spectrum disorder, female autistic children, and autistic children 6–12 years old. In conclusion, physical activity is a promising approach to help children obtain sufficient sleep duration. However, more personalized approaches to improving sleep may be needed for certain groups of autistic children.

Infrequent intranasal oxytocin followed by positive social interaction improves symptoms in autistic children: a randomized clinical trial

There are currently no approved drug interventions for social behavior dysfunction in autism spectrum disorder (ASD). Previous trials investigating effects of daily intranasal oxytocin treatment have reported inconsistent results and have not combined it with positive social interaction. However, In two preclinical studies we established that treatment every-other-day rather than daily is more efficacious in maintaining neural and behavioral effects by reducing receptor desensitization. We aimed to establish whether 6-weeks of intranasal oxytocin compared with placebo treatment, followed by a period of positive social interaction, would produce greater symptom improvements in children with ASD. A double-blind, randomized, cross over design trial was completed including 41 children with ASD aged 3-8 years. Primary outcomes were the Autism Diagnostic Observation Schedule-2 (ADOS-2) and social responsivity scale-2 (SRS-2). Secondary measures included other autism-related questionnaires and social attention assessed using two eye-tracking paradigms. A clinical reliable change index analysis revealed improvements in ADOS-2 total scores in 44% of children. Improvements in SRS-2 and behavioral adaptability scores were also found and correlated with increased basal saliva oxytocin concentrations. Additionally, oxytocin improved restrictive and repetitive behavior scores and increased time spent viewing dynamic social compared to geometric stimuli and the eye region of angry, happy and neutral expression faces. There were no adverse side-effects of oxytocin treatment. Overall, our results demonstrate that 6 weeks of intranasal oxytocin treatment administered every other day and followed by positive social interactions can improve clinical, eye-tracking and questionnaire-based assessments of symptoms in young autistic children.

Brief Report: Above and Beyond Safety: Psychosocial and Biobehavioral Impact of Autism-Assistance Dogs on Autistic Children and their Families

Autism-Assistance Dogs (AADs) are highly-skilled service animals trained primarily to ensure the safety of an autistic child by preventing elopement and mitigating ‘meltdowns’. Although anecdotal accounts and case-studies have indicated that AADs confer benefits above and beyond safety, empirical support anchored in validated clinical, behavioral, and physiological measures is lacking. To address this gap, we studied children and their families before and after receiving a well-trained AAD using a within-subject, repeated-measures design. Notably, this study is the first to assess change in a biomarker for chronic stress in both autistic children and their parents. Final analyses included pre-/post-AAD data from 11 triads (parent/handler-dog-child) demonstrating significantly positive psychosocial and biobehavioral effects of AADs.

Exposure to family stressful life events in autistic children: Longitudinal associations with mental health and the moderating role of cognitive flexibility

Mental health problems are prevalent in autistic youth, but the underpinning mechanisms are not well explored. In neurotypical youth, stressful life events are an established risk factor for mental health problems. This study tested longitudinal bidirectional associations between family-level stressful life events and mental health problems and whether these were moderated by cognitive flexibility, in a cohort of autistic children ( N = 247). Family-stressful life events, assessed using the parent-reported Family Inventory of Life Events and Changes, and mental health problems, assessed using the teacher-reported Child Behavior Checklist Internalizing and Externalizing Symptoms subscales, were measured at multiple points between 7 and 11 years. Analyses showed no significant pathways from internalizing or externalizing symptoms to family-stressful life events or from family-stressful life events to internalizing or externalizing symptoms. There was some evidence of moderation by cognitive flexibility; the family-stressful life events to internalizing symptoms pathway was non-significant in the group with typical shifting ability but significant in the group with clinically significant shifting problems. Information about family-level stressful life event exposure and cognitive flexibility may be helpful in identifying autistic youth who may be at higher risk of developing mental health problems. Established risk factors for mental health problems in neurotypical populations are relevant for understanding mental health in autistic youth. Lay abstract Experiencing stressful life events, such as a parent having had serious illness, parental divorce, bullying and victimization, is known to increase risk for mental health difficulties in neurotypical children. However, few studies have looked at whether stressful life events have a similar impact in autistic youth and if any individual characteristics may moderate the impact of said life events. In this study, we tested whether in autistic children aged 7–11 years, exposure to family-level stressful life events predicted later mental health symptoms (and vice versa). We also tested whether associations between stressful life events and mental health symptoms differed depending on the child’s level of cognitive flexibility. We found stressful life events only predicted internalizing symptoms (such as anxiety and depression) in children with clinically significant difficulties in cognitive flexibility (as rated by their parents). Mental health symptoms did not predict future exposure to stressful life events. Results suggest that information about exposure to stressful life events and cognitive inflexibility may be helpful in identifying autistic children who may be at risk of developing anxiety and depression symptoms.

Parents' perceptions of autism and their challenges in China

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by social communication deficits and restricted or repetitive behaviors. Parents play a significant role in research, clinical practice and policy development on autism. Parents' perceptions of autism can affect not only their own well-being, but also their children's development. Nevertheless, few studies have examined the parents’ perception of autism in Chinese context. The parents’ perception of autism questionnaire was applied to collect information from 171 families of children with ASD, mainly to investigate the knowledge of autistic children and the difficulties the family facing. The following conclusions were drawn from this study: (1) Mother as the primary caregiver for children with ASD; (2) Parents’ perception of ASD were various parents of autistic children have a good understanding of the symptoms, causes, age of onset and interventions, and their expectations of the prognosis and the future life of their autistic children are high; (3) The difficulties that faced by the parents are mainly composed of low social acceptance, family pressure and concerns about the effectiveness of interventions for their children. In consideration of the future development of children with autism and the mental health development of their parents, it is particularly crucial to support their parents with multifaceted support.