Experiences of accumulated stress among aging parent caregivers of adults with autism spectrum disorder

With the continuing increased incidence rate of autism spectrum disorder over the decades, there are increasing numbers of adults with autism who require varying levels of lifelong care, typically from parents. It is necessary to understand parents' lived experience of lifelong caregiving, and how their own aging process further impacts life quality. Furthermore, greater understanding of stressors, resources, appraisals, and coping among parent caregivers of children with "high functioning autism" who are transitioning into young adulthood is particularly necessary as services, needs, and experiences for both are nuanced due to functional status, deficits in the service system, and demographic disparities. Given lifespan aspects past research has not addressed, the study focused on development of a measure of parent accumulated stressors, and on interrelations of stressors, perceived social support, future time perspective, burden, satisfaction, and coping on health-related quality of life and meaning in life among 28 parents of young adults with autism. Although proposed quantitative analyses were not completed due to sample size, qualitative analyses on parent experiences and stressors revealed common themes of concern for child's future quality of life, complicated dynamics of providing help to their child overtime, and increased stress related to others' lack of understanding of their child. In total, 10 themes and multiple subthemes were identified in relation to aspects of accumulated stressors. Findings suggest parent stress with this specific population is complex, manifesting in nuanced ways at different life stages. Impacts of the COVID-19 pandemic are also explored, and implications for scientific advancement and clinical services are discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Creating Co-Curricular Activist Writing Projects for Students in Writing Programs: The Case of the Neurodiversity Celebration Collaborative (NCC)

Context The NCC originally came into being through calls from various corners for more attention to the unmet mental health needs of college students and students with autism (Beiter et al.;Bruffaerts et al.;Lipson et al.;PinderAmake;Storrie et al.) as well as calls from disability activists for more space to support, highlight, and celebrate disabled and neurodiverse persons and the rich diversity they bring to our campuses (Dwyer et al.;Clouder et al.;Sachs;Yergeau). Through strategic research and advocacy, we will evaluate current mental health resources on and off campus, create appreciation versus sympathy for cognitive differences, bring to light inconsistencies and inaccuracies in the literature, establish appropriate forums of disclosure for students, and ultimately help constitute a more connected and understanding campus climate that celebrates neurodiversity as an integral part of any functioning university and its surrounding community. [...]most recently during the 2021-2022 academic year, the group held an event in which they discussed the concept of neurodiversity itself with a wider audience. Establishing student leaders is a crucial step in moving the faculty member out of the leadership role and making it clear to students that they have agency and the final say in how things will go.

Trends in Second Generation Antipsychotic Prescribing for Adolescents from 2013-2021

Objectives: To examine temporal trends of FDA-approved and off-label second-generation antipsychotic (SGA) prescribing for adolescents over time through the Covid-19 pandemic. Method(s): This is a new-user, retrospective longitudinal panel study using electronic health record data from a large, integrated health care system. Outpatient prescription orders for a new SGA (index date) for adolescents (age 10-17 years) during 2013-2021 were analyzed. Prescription orders were linked to diagnoses at time of encounter to examine prescribing behavior. A one-year lookback period was used for baseline inclusion and exclusion criteria, including one-year "washout" of SGAs and continuous insurance enrollment. FDA-approved use was determined by two outpatient diagnoses (one baseline diagnosis and the prescription order diagnosis) for autism, psychotic disorders, bipolar disorders, or Tourette's;the remaining proportion was considered potentially off-label. We report crude annual prescribing rates per 1,000 youths. Result(s): There were 8,145 unique patients with new SGA prescription orders, of which 5,828 (71.6%) had linked diagnoses available. Calendar year 2013 had the highest prescribing rate prior to Covid-19 onset (2.1 per 1,000) but then declined through 2016 (1.7 per 1,000). Prescribing rates in 2020 (2.0 per 1,000) and 2021 (2.2 per 1,000) were higher than those between 2017-2019. Across all study years, SGA prescriptions were mostly off-label and ordered for aripiprazole, quetiapine, or risperidone. The proportion of off-label indications was highest in 2013 (80.1%) and lowest (69.1%) in 2019. Off-label proportions increased again in 2020 (76.1%) and in 2021 (74.1%). At baseline, patients frequently had other psychotropic prescriptions (e.g., antidepressants 63.3%, stimulants 22.9%, and sedatives/hypnotics 20.7%). Conclusion(s): A general decline in SGA prescribing rates among adolescents was observed from 2013 to 2019, but then increased following Covid-19 onset. Despite known safety risks, off-label use of SGAs remains prominent. Future studies are needed to better understand prescribing outside of pediatric professional society guidelines.Copyright © 2023

The impact of COVID-19 on parents of autistic children with a particular focus on access to respite care

PurposeThis study aims to explore how the COVID-19 pandemic has impacted parents of autistic children and their families in Ireland. Design/methodology/approachA qualitative thematic analysis methodology was applied using semi-structured interviews. A total of 12 parents (ten mothers, one father and one grandfather speaking on behalf of a mother) of autistic children were asked how the COVID-19 pandemic impacted them and their autistic child with a particular focus on how it has impacted their access to respite care. Interviews were completed remotely from July 2021 to October 2021. FindingsData analysis identified four themes that reflect an adverse pandemic impact. These were: world gone;alone and isolated;constantly fighting for help;and negative and positive impact of COVID-19 on child and family. Two parents reported positive outcomes of the pandemic such as social distance requirements. Five parents (42%) reported an increase in the amount of respite received. Three parents (25%) reported a decrease and four (33%) parents reported no change in their access to respite. Research limitations/implicationsCOVID-19 has turned a spotlight on mental health for politicians, policymakers and the public and provides an opportunity to make mental health a higher public health priority for autistic children and their families. Originality/valueThis study highlights the need for access to respite for autistic children and for respite services to be responsive to the ongoing needs, in particular, the mental health needs of autistic children and their family, particularly in a crisis situation.

Experiences of Parents and Practitioners Working with Middle School Students with ASD during the COVID-19 School Shutdown

People with Autism Spectrum Disorders (ASD) may be especially vulnerable to the effects of the COVID-19 pandemic due to their unique characteristics. This qualitative case study used interviews with instructional staff and parents to understand the experiences of both families and practitioners during the COVID-19 pandemic, and how this can inform the use of virtual instruction for students with ASD. Through the lens of Bronfenbrenner's ecological systems theory (1979) we examined how the different layers of our world shifted due to the pandemic, and what influence this had on our students with a diagnosis of ASD. Findings revealed several themes of among the interview transcripts, five main themes were observed: COVID-19, conflict of no control versus freedom, setting, technology use and preparation, and perspective.

Online Availability of a Robot Therapy for Children with Autism

In this paper we will present a case in which a robot therapy for children with autism was transferred from clinic to home conditions. The developed application enables the children to continue with the interventions in home conditions. This proved especially important in the COVID-19 pandemic. The application also allows monitoring of the child's activities, through which the therapist can later analyze the patient's behavior and offer appropriate therapy. The application shows reliable results and gives promise to develop beyond the user case we are considering. © 2023 IEEE.

Assessment of Autism Spectrum Disorder.

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by challenges in social interaction and communication and the presence of restricted interests and repetitive behaviors. The importance of early detection of ASD and subsequent early intervention is well documented. Efforts have been made over the years to clarify ASD diagnostic criteria and develop predictive, accurate screening tools and evidence-based, standardized diagnostic instruments to aid in the identification of ASD. In this article, we review the most recent changes in ASD diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision, summarize evidence-based instruments for ASD screening and diagnostic evaluations as well as the assessment of co-occurring conditions in ASD, the impact of COVID-19 on ASD assessment, and directions for future research in the field of ASD assessment.

Mathematics Learning Through Online Video-Based Instruction for an Autistic Child.

The purpose of this study was to examine the effectiveness of a video modeling (VM) intervention package (including virtual manipulatives and error correction) delivered via synchronous, virtual environment to teach the mathematics skills of addition, number comparison, and subtraction to a five-year old autistic child. Using a multiple probe across skills design of a single-case experimental design, we examined whether a causal relation existed between the intervention and the child's improved accuracy of mathematics problem-solving. Following the intervention, the autistic child showed improved accuracy across all three skills and continued to solve problems with 100% accuracy during the generalization phase, which also served as the immediate maintenance phase.

Benefits and Challenges of a Telehealth Eating and Mealtime Intervention for Autistic Children: Occupational Therapy Practitioners' Perspectives.

Eating and mealtime challenges are common in autistic children, yet intervention access is limited. Telehealth may provide opportunities to address this gap and increase access for underserved families. This study examined the occupational therapy practitioner's perceptions of transitioning from a caregiver-mediated, in-home eating, and mealtime intervention for autistic children to telehealth owing to COVID-19 while considering the impact on accessibility, challenges, and benefits. Family characteristics were compared between groups. Thematic analysis of semi-structured interviews explored practitioners' experiences of telehealth. Statistical findings and themes were directly compared and contrasted. The following three themes emerged: Intervention Adaptations, Challenges for Interventionists, and Benefits of Telehealth. The differences in the families' geographic location were identified. Themes and family characteristic differences supported increased intervention accessibility for the telehealth group. This study provides preliminary evidence that telehealth can increase access to specialized services. There are benefits and challenges to implementing telehealth with families and autistic children.

The challenges of screen time in children with typical development and children with developmental disorders during COVID-19 pandemic.

Background: The significant lifestyle changes that occurred during the lockdown period associated with the COVID-19 pandemic may have had many potential adverse effects on children, in particular, sedentary screen exposure among children, including those with developmental disorders. We conducted a cross-sectional study to investigate and compare the screen time and outdoor activity time of children with typically development (TD) and those with developmental disorders during and before the emergence of COVID-19, and identified the risk factors related to screen time during the COVID-19 pandemic. Methods: A total of 496 children were surveyed via online questionnaires. Parents or/and children filled in the online questionnaire, including basic characteristics, screen time, outdoor activity time, and other related factors. The Statistical Product and Service Solutions software was used to analyze all data. Results: Children spent less time outdoors (t=14.774, P<0.001) and more time on electronic screens (t=-14.069, P<0.001) during the lockdown period of COVID-19, compared to the periods before COVID-19. Age (P=0.037), pre-COVID-19 screen time (P=0.005), screen time used for learning/education (P<0.001), screen time of siblings (P=0.007), and use of screen devices as electronic babysitters (P=0.005) were risk factors for screen time during the COVID-19 pandemic, while restrictive use of electronic devices by parents (P<0.05) was a protective factor. The screen time of children with autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD) was significantly longer than children with TD before COVID-19 pandemic, but there is no statistical difference during the COVID-19 pandemic. Conclusions: During the COVID-19 pandemic, children's screen exposure time increased, and outdoor activities decreased significantly. This represents a significant challenge, and we should focus our efforts on managing children's screen time and promoting healthier lifestyles, including children with typical development, as well as those with developmental disorders.

The impact of COVID-19 on receipt of health services among children with and without autism.

LAY ABSTRACT: The COVID-19 pandemic disrupted doctor's and dental visits, mental health treatments, and other special therapies for children across the United States. Prior research has found that autistic children were more likely to lack these services even before the pandemic, but they experienced more mental health and behavior problems with the onset of the pandemic, increasing the need for these services. This study analyzed data from before (2019) and after (2020) the onset of the pandemic to determine whether autistic children had even more severe disruptions in services after the pandemic started compared to nonautistic children. We found that autistic children were more likely to have unmet medical, dental, and mental health needs in both 2019 and 2020. Overall, children experienced increased disruptions from 2019 to 2020, but this did not differ by diagnosis. Our results suggest that there are persisting gaps in autistic children's healthcare regardless of the pandemic. We discuss issues surrounding barriers to services for autistic children and issues surrounding virtual services, such as teletherapy. Future research should further explore how to reduce barriers to services for autistic children, including virtual and in-person services.

Neurodegenerative and Neurodevelopmental Diseases and the Gut-Brain Axis: The Potential of Therapeutic Targeting of the Microbiome.

The human gut microbiome contains the largest number of bacteria in the body and has the potential to greatly influence metabolism, not only locally but also systemically. There is an established link between a healthy, balanced, and diverse microbiome and overall health. When the gut microbiome becomes unbalanced (dysbiosis) through dietary changes, medication use, lifestyle choices, environmental factors, and ageing, this has a profound effect on our health and is linked to many diseases, including lifestyle diseases, metabolic diseases, inflammatory diseases, and neurological diseases. While this link in humans is largely an association of dysbiosis with disease, in animal models, a causative link can be demonstrated. The link between the gut and the brain is particularly important in maintaining brain health, with a strong association between dysbiosis in the gut and neurodegenerative and neurodevelopmental diseases. This link suggests not only that the gut microbiota composition can be used to make an early diagnosis of neurodegenerative and neurodevelopmental diseases but also that modifying the gut microbiome to influence the microbiome-gut-brain axis might present a therapeutic target for diseases that have proved intractable, with the aim of altering the trajectory of neurodegenerative and neurodevelopmental diseases such as Alzheimer's disease, Parkinson's disease, multiple sclerosis, autism spectrum disorder, and attention-deficit hyperactivity disorder, among others. There is also a microbiome-gut-brain link to other potentially reversible neurological diseases, such as migraine, post-operative cognitive dysfunction, and long COVID, which might be considered models of therapy for neurodegenerative disease. The role of traditional methods in altering the microbiome, as well as newer, more novel treatments such as faecal microbiome transplants and photobiomodulation, are discussed.

Remote autism assessments - lessons learned from the Covid-19 pandemic: a service evaluation

PurposeThe COVID-19 pandemic has resulted in health services adapting the delivery of routine assessments, with many operating remotely. This paper aims to explore the lived experiences of individuals undertaking remote autism assessments during the COVID-19 pandemic. Design/methodology/approachA mixed-methods service evaluation was completed in an adult autism and neurodevelopmental service based in the north of England. A total of 24 participants, who had undergone remote autism assessments between March 2020 and July 2020, completed a questionnaire about their experiences. Thematic analysis was performed, and additional quantitative data were analysed descriptively to allow contextual information to be included. FindingsThe evaluation identified three main themes. The first, practical and sensory issues of remote assessment, indicated that internet connectivity problems were common and sometimes impeded a successful assessment. Additionally, participants identified some elements of the videocall impacted their sensory sensitivities. The second theme, emotional responses to remote assessment, demonstrated relief and exhaustion to be common following sessions. The ability to complete assessments from a safe space were favoured by most. The final theme, pros and cons of different assessment methods, highlighted the preference for video assessments above telephone and in person sessions. Originality/valueThis study provides an original contribution to the literature by gathering autistic adults' perspectives on remote autism assessments. The findings suggest that video assessments were the most preferable, over face-to-face and then telephone. Services should offer video and face-to-face assessments while keeping telephone assessments to a minimum.

Limited face-to-face learning on students in inclusive classrooms during the Covid-19 pandemic: Perceptions of elementary school teachers in Indonesia

Implementing limited face-to-face learning (LF2FL) during the COVID-19 pandemic has impacted students in inclusive classrooms. Some of the adjustments teachers and students faced were obstacles and challenges that took time to make. The teacher must comply online learning experience conducted with all its shortcomings during the implementation of LF2FL and its impacts on students, including students with disability. We conducted a study to explore teachers' perceptions of the impact of implementing LF2FL on students in inclusive classrooms in elementary schools. This research used a case study to obtain and examine data in a context that the phenomena will accept in depth. We involved 16 elementary school teachers, conducted semi-structured interviews, and analysed the data using thematic analysis. The results showed two main themes, namely learning outcomes and instructional processes, which emerged for students without disabilities and students with disability. For the learning outcomes, teachers highlighted sub-themes of the cognitive and affective aspects most. The instructional process sub-theme of the interaction was one of the essential aspects of minimising learning loss during online learning from home. Our finding detail in more depth the two types of students, both in terms of similarities and differences of LF2FL on students in inclusive classrooms that contributes to the reconfirmation of knowledge for all students, reduces students' mental stress, and increases student motivation through direct interaction between teachers and students. It is necessary to increase transformational competence in the education system for teachers, especially in the inclusive education system. The government needs to modify the curriculum to be more flexible and adaptive for all students in inclusive elementary schools who can keep up with the changes in education in Indonesia.

A Comparison of Telehealth-Based Instruction with or without Instructive Feedback.

Language delays are commonly displayed by children on the autism spectrum. To help facilitate the development of verbal behavior, practitioners often implement intensive one-on-one, face-to-face instruction. However, the COVID-19 pandemic hindered typical face-to-face service delivery and caused practitioners to assess alternative approaches to facilitate clients' continued progress. Instructive feedback (IF) is one teaching strategy to enhance instruction or make it more efficient. During this teaching procedure, instructors provide formal teaching of target responses and embed demonstrations of secondary target responses within sequences of instruction. In the current study, we investigated the efficacy of IF provided within telehealth instruction. Four participants on the autism spectrum participated in the study. Participants received two forms of telehealth instruction that targeted speaker-responding. The first form consisted of discrete trial instruction (DTI), and the second form combined DTI with IF. These results indicate that both forms of instruction improved speaker-responding of primary targets for all participants. Additionally, a secondary analysis of secondary targets indicated that two of the four participants acquired some secondary targets. These results suggest that including IF within DTI might be beneficial for some participants receiving DTI via telehealth.

Occupational therapists' Perspectives of Using Telehealth for Youth with Autism Amidst the COVID-19 Pandemic in the UK: A Pilot Qualitative Study

The COVID-19 national emergency led to a surging demand for telehealth expansion within pediatric occupational therapy. Despite the growing literature on telehealth as a response to COVID-19, few studies explore the use of telehealth for children and young people with autism spectrum disorder (ASD). This pilot study aimed to understand the experiences of occupational therapists adapting to a virtual delivery service model amidst COVID-19 to support youth with ASD. The researchers used a qualitative research design. Semi-structured, video-based interviews were used to collect data. Interviews were analyzed using thematic analysis. This study included 3 UK registered occupational therapists. Four themes emerged from the data: 1. "Telehealth is Reducing Social Anxiety" 2. "Parents End Up Becoming Your Therapy Assistants" 3. "Nothing Will Replace Face to Face for Assessments" 4. "You Definitely Have to Be More Creative." The themes report that telehealth can reduce social anxiety, increase skill transferability, and improve family involvement. Participants indicated that shorter sessions, movement-based interventions, planning and adapting to home-based resources were strategies that overcame the limitations of virtual therapy. The findings contrast with some previous research that found that telehealth may inhibit engagement and may strain the therapeutic rapport. This study supports existing literature that telehealth can enhance engagement, family involvement and generalization of skills. Findings from this study support the use of telehealth to deliver occupational therapy services for children and young people with ASD, but it is recommended that telehealth should not be a one size fits all service delivery model. Further larger-scale research is needed to confirm the study findings and to explore the family and young person's perspectives of using telehealth.

An evaluation of preference stability within MSWO preference assessments for children with autism.

Previous research has commonly evaluated preference stability over time and across multiple preference assessment administrations. No studies have evaluated shifts in preference across consecutive rounds of a single preference assessment, where rounds refer to each time the experimenter resets the stimulus-presentation array. The purpose of the present study was to examine the stability of stimulus selections across successive rounds of a multiple-stimulus-without-replacement (MSWO) preference assessment with different classes of stimuli for children with autism. The study involved a secondary data analysis and calculation of preference stability across consecutive rounds using Spearman rank-order correlation coefficients (Spearman's ρ ) for 17 participants across 40 MSWO preference assessments. Patterns of preference stability were observed in 24 out of the 40 assessments (60%) indicating that children's preferences in this study were slightly more likely to be classified as stable than other observed patterns of responding.

Assessing behavioral learning loss: measurement and treatment Issues in the time of COVID-19

To date, most studies seeking to explore the impact of COVID-19 school closures on student outcomes have focused on cognitive/academic losses. This study explores changes in adaptive behaviors experienced by children and youth with autism spectrum disorders or other developmental disabilities when in-person, one-to-one behavior training was converted to telehealth delivery. Participants in this study were rated on the Adaptive Behavior Assessment System, 3rd Edition (ABAS-3) at three data points: pre-COVID;six months after COVID closure;and 12 months after COVID closure. ABAS-3 standard scores were evaluated to determine any losses or gains in adaptive behavior that occurred during the COVID shutdown of in-person programming. Issues related to assessment of behavior and delivery of telehealth programming are discussed. © 2023 Taylor & Francis Group, LLC.

Uncertainty and Autism: How Changing with the Times is Harder for Some

COVID-19 has brought about major changes to the lives of people around the world. How people engaged in their daily routines, worked, shopped, socialised, and spent time with family shifted. Changes in nearly every aspect of daily life became the norm with no time to adapt. Face-to-face appointments were swapped for online consultations, face masks and physical distancing requirements were standard, and nuanced social interactions changed. People stopped shaking hands and kissing cheeks. They touched elbows or waved from a distance. People fanned out candles on birthday cakes. Sometimes people did not leave the house. With COVID-19, life has become unmistakably different, and adjusting to these changes has required a degree of cognitive flexibility, adaptability, and resilience. But what happens when, as an autistic person, tolerating change is your least favourite thing to do? This chapter has been co-authored by a young adult with autism who struggles with lockdowns, an autistic academic with a quirky sense of humour, an educational and developmental psychologist who loves staying in her pyjamas all day, a therapist who works with autistic individuals (and appreciates her children just a little bit more when they can physically attend school), another educational and developmental psychologist who has been taught a lot about autism from the young people she has assessed and counselled ("How can you sit and listen to people talking at you all day?”), and an inclusive education researcher and behaviour analyst who has the lived experience of psychosocial disability and prefers the company of her dogs. Together we explore the experiences of lockdown through the lived experiences of autistic people leveraging research to create a new and novel perspective. The chapter presents a unique way of integrating research evidence to shed light on the experiences recalled. Living life during a global pandemic calls for a need to deal with unpredictability and change. But what happens when you wish COVID-19 would be quickly eradicated? This chapter will address this question and more. © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2022.