Novel Screening Tool and Considerations for Music Therapists Serving Autistic Individuals via Telehealth: Qualitative Results from a Survey of Clinicians' Experiences.

During the COVID-19 pandemic, music therapists transitioned services from in-person to telehealth due to health and safety concerns. Though online delivery of music therapy services for autistic individuals occurred prior to 2020, the number of North American music therapists using telehealth with autistic clients rose substantially during the pandemic. The current paper's objective was to delineate music therapists' perceptions regarding factors that helped or hindered autistic persons' engagement in online music therapy sessions. In total, 192 participants completed the survey. Qualitative content analysis of an open-ended question identified seven overarching themes regarding the benefits and challenges of telehealth music therapy for autistic clients. Findings were used to create a screening tool to help music therapists evaluate autistic persons' suitability for telehealth and meet the needs of those who can benefit from telehealth music therapy.

Barriers to healthcare and their relationship to well-being and social support for autistic adults during COVID-19.

AIM: The present study aimed to investigate barriers to healthcare and their relationships to social and emotional well-being and intersectional inequalities for autistic adults during COVID-19 restrictions in the UK. BACKGROUND: Autistic adults experience severe health inequalities and report more barriers to accessing health services compared to other both disabled and non-disabled populations. The COVID-19 pandemic has impacted many areas of society that may have increased vulnerability of autistic people to social and health inequalities, including delivery of healthcare from in-person to remote methods. METHOD: One hundred twenty-eight autistic adults who lived in the UK took part in an online survey. Measures included the Barriers to Healthcare Checklist (Short Form) and PROMIS outcome measure bank to assess emotional well-being and social support. Participants rated their agreement with items, retrospectively considering three different points of the trajectory of COVID-19 restrictions: before COVID-19, during the first lockdown in spring 2020, and in the month prior to taking the survey during autumn 2020. They completed a follow-up survey six months later to continue to assess change as restrictions in the UK were eased. FINDINGS: The average number of barriers to healthcare showed no significant change between all four time points. However, the nature of barriers to healthcare changed at the point of lockdown and persisted beyond the easing of COVID-19 restrictions. Barriers to healthcare were associated with some social and emotional well-being variables and demographic groups including gender, education and presence of additional disabilities. The findings may help to identify areas to target to improve access to both remote and in-person health systems for autistic people as modes of delivery continue to change over time.

Parental Perceptions of Service Access for Transition-Aged Youth With Autism During COVID-19.

Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services and maintaining current services during the first year of the COVID-19 pandemic. Structured interviews were conducted with 65 parents of transition-aged youth (aged 16-26) with ASD living in three states (IL, TN, and WI) in the United States. None of the participants reported receiving new services during the pandemic, and many struggled to access services via online applications. In addition, participants reported that service suspensions and changes in modality (e.g., from in-person to telehealth) were spearheaded by professionals and not families. Participants, especially those in TN, were more likely to pay out-of-pocket for services during the COVID-19 pandemic to compensate for service disruptions. Implications for research and practice are discussed.

Remote Work Support Needs of Employees with Autism Spectrum Disorder in Poland: Perspectives of Individuals with Autism and Their Coworkers.

BACKGROUND AND AIMS: With remote work becoming more common across industries, employees with autism may experience different work support needs from neurotypical peers. However, the specific remote work needs of this group of employees are underexplored in the literature. We aim to propose ways to assess workplace digital adaptation needs for individuals with autism and a framework for communicating these needs to employers. METHODS: This qualitative study included interviews with 13 Polish business professionals, including coworkers and/or supervisors of employees with autism (n = 9) and female employees with autism (n = 4), about their remote work support needs. Participants responded to semi-structured interview questions identifying advantages and risk factors associated with remote work for this specific group of employees. RESULTS: Participants reported advantages of remote work, such as limiting sensory overload and intensive interpersonal contacts, indirect interpersonal communications, flexible work hours, and eliminating the need to travel to work. Participants also reported challenges of remote work, such as reducing wanted or helpful social contacts, engaging in direct electronic communications, limiting opportunities to learn from other employees, and managing work-life balance. CONCLUSION: These findings suggest a need for an autism-inclusive digitalized remote work design customized to the unique needs of employees on the autism spectrum. Business managers would be key partners in the design of autism-inclusive digitalized remote work systems. Additional research is needed with larger and more diverse samples of employees with autism.

Acceptance of Telehealth Therapy to Replace In-Person Therapy for Autism Treatment During COVID-19 Pandemic: An Assessment of Patient Variables.

Importance: Children with autism achieve improved behavioral outcomes with applied behavior analytic (ABA) interventions. Typically, ABA is delivered in a participant's home or in a clinic setting. At the onset of COVID-19, treatment in these environments was not available due to health exposure concerns. A large social service organization in California rapidly pivoted to the delivery of ABA intervention through telehealth. Access disparity for telehealth has been a historical concern in health care delivery, particularly for disenfranchised populations within the autistic participant population. Objective: This study evaluated the demographic and behavioral variables associated with the acceptance or declination of telehealth by the pediatric participants' caregivers at the onset of the pandemic. Design, Setting, Participants: A non-experimental design was used, and archival data were compared for a random sample of 100 participants with autism who accepted telehealth interventions with 100 participants who declined it. Main Outcomes and Measures: Socioeconomic data, gender, age, ethnicity, language, and household size were compared. Clinical data were compared for treatment dosage, standardized Vineland Adaptive Behavior Scales scores, and Verbal Behavior Milestones Assessment and Placement Program scores. Results: None of the demographic variables were statistically significant in a participant's acceptance or declination of telehealth, but there were moderate differences in treatment dosage across the groups. Conclusions: It is concerning that a large portion of participants initially declined intervention via telehealth, resulting in these participants experiencing a gap in intervention during the pandemic. As intervention is imperative for pediatric autism participants, it is untenable that ∼40% of the population initially declined telehealth at the start of the pandemic.

Habilitative Teletherapy for Children with Autism Spectrum Disorder: A Survey of Parents.

OBJECTIVE: The purpose of this study was to investigate whether service losses during the coronavirus disease 2019 (COVID-19) pandemic were associated with worsened parent mental health or child behavioral health among families of children with autism spectrum disorder and to identify factors associated with favorable parent appraisals of habilitative teletherapy (applied behavior analysis; speech, occupational, physical therapy) for their child. METHOD: This web-based survey study was conducted from May to July 2021 with parents whose children were receiving habilitative therapy for autism from an integrated health system. A total of 322 parents responded to the survey (20% response rate). The outcome variables were pandemic-related parent mental health, pandemic-related child behavioral health, and appraisal of habilitative teletherapy. Predictors were COVID-19-related services changes in health care or child care, COVID-19 history (COVID-19 stress, testing positive for COVID-19), and child autism factors (autistic behaviors, caregiving strain). RESULTS: Loss of regular child care was associated with higher odds of worsened parent mental health (odds ratio [OR] = 2.7, 95% confidence interval [CI] = 1.5-4.8); higher levels of caregiving strain were associated with worsened child behavioral health (OR = 2.3, 95% CI = 1.4-3.8). Higher levels of COVID-19 stress were associated with more favorable appraisals of telehealth (ß = 0.4, p < 0.01), whereas higher caregiving strain scores were associated with less favorable appraisals of telehealth (ß = -0.2, p < 0.01). CONCLUSION: During COVID-19, caregiving factors were associated with worsened parent mental health and worsened child behavioral health, and telehealth is not preferred by all families. Policy interventions to support caregivers, such as affordable, high-quality child care and paid family leave, are a high priority.

A Pediatrician's Guide to Working with Children on the Autism Spectrum in Coronavirus Disease 2019 and Beyond: Retrospect and Prospect.

The COVID-19 pandemic is an unprecedented event with devastating effects on children and families, highlighting and broadening disparities in the care of children with developmental disabilities, while simultaneously catalyzing innovation. Children are vulnerable to the impacts of COVID-19, resulting in increased stress, anxiety, isolation, and health challenges, further amplified in autistic children and children with other neurodevelopmental disabilities. These children are uniquely vulnerable due to communication impairments, comorbid medical disorders, reduced adaptability, and reliance on therapeutic interventions. Abrupt reduction in services and access to care during the pandemic compromised physical and mental health and led to missed intervention opportunities at critical times. It is important to examine the effects that the pandemic triggered, address deficiencies, and recognize new opportunities to improve systems of care to prepare for unforeseen futures.

Care burden, coping styles and involvement in care in mothers of autistic children in pandemic of COVID-19.

AIM: The aim of the present study was to investigate the burden of care, coping styles and involvement in the care of mothers of autistic children in the pandemic of COVID-19 in Iranian society. DESIGN: A cross-sectional study. METHODS: A total of 134 mothers completed questionnaires online. Data were analysed by descriptive statistics (frequency, percentage, mean and standard deviation) and independent t-test, ANOVA and multiple linear regressions. The significance level was considered p < .05. RESULT: Findings of the study found that burden of care has a strong and direct correlation with involvement in care (p < .001, r = .78) and strongly and indirectly correlated with coping styles (p < .001, r = -.82). Variables of coping styles, involvement in care, mothers' occupation and number of children, age and functional level of autism can predict 81.27% of the variance in care burden in these mothers.

Using evaluative frameworks to examine the implementation outcomes of a cognitive behavioral therapy program for autistic students with anxiety within public school settings.

LAY ABSTRACT: Cognitive behavioral therapy helps to treat anxiety symptoms in autistic youth, but it is difficult for families to access cognitive behavioral therapy in the community. Training school providers to deliver cognitive behavioral therapy may help autistic youth and their families to access these programs. Unfortunately, we do not know how cognitive behavioral therapy programs can be delivered by school providers and how these programs help the autistic students who access them. This study addressed this gap and was part of a larger study that looked at the effectiveness of Facing Your Fears-School-Based in 25 public schools. The study goals were to understand whether Facing Your Fears-School-Based helped students and the factors that made it easy or difficult to deliver Facing Your Fears-School-Based in schools. Thirty providers participated in interviews guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Participants shared information that fell into several major categories that included (1) delivering Facing Your Fears-School-Based to many different students; (2) the positive impact of Facing Your Fears-School-Based on students' school participation; and (3) plans to continue using Facing Your Fears-School-Based. School providers also shared that Facing Your Fears-School-Based was easy to use for non-mental health providers and reported adapting Facing Your Fears-School-Based to meet student needs. The results of this study suggest that Facing Your Fears-School-Based may help autistic students and highlight the importance of using mental health programs in schools that are flexible, able to be adapted, and that are able to be used by many different types of school providers.

Evaluation of a Graduated Exposure Procedure to Teach Extended Mask Wearing in Various Settings to Children With Autism.

During the COVID-19 outbreak, the Center for Disease Control (CDC) recommended that everyone 2 years and older wear a face mask while in a community setting. However, children with autism may be reluctant to wear a mask, particularly for extended durations. In the current study, we implemented a graduated exposure procedure to teach mask wearing for a minimum of 1 hour in an early intensive behavioral (EIBI) intervention clinic to three children diagnosed with autism. We subsequently probed mask wearing, and if necessary implemented the graduated exposure procedure, in each participant's home and in a mock physician's office. Finally, we collected probe data on mask wearing in another community setting and 1 month post-treatment maintenance data in the EIBI clinic. During baseline, participants wore masks for 0 second to 5 minutes. After treatment, all participants wore the mask for at least 1 hour in each setting, with maintenance probes indicating 4 to 5 hour mask tolerance.

Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families.

LAY ABSTRACT: Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities.

Predictors of Satisfaction with Autism Treatment Services During COVID-19.

The COVID-19 pandemic has created unprecedented challenges and disruptions for autistic individuals receiving specialized treatment services. This caregiver-report survey study (n = 339) explored predictors of satisfaction with autism services during COVID-19 to improve perceived support for these families. Specifically, we investigated whether service delivery medium (telehealth vs. in person), child's emotional functioning, and caregiver stress would predict satisfaction with the most highly utilized services. Satisfaction ratings for ABA/behavioral, speech/language, and occupational therapy were lower when delivered via telehealth as compared to in person. Caregivers who reported higher emotional dysregulation in their children were less satisfied with behavioral therapy services. These results provide a critical caregiver-informed perspective on factors influencing satisfaction with specialized autism services during COVID-19.

Using formative research to develop HEARTS: A curriculum-based healthy relationships promoting intervention for individuals on the autism spectrum.

LAY ABSTRACT: What is already known about the topic? All people can benefit from education about how to have healthy friendships and dating relationships. But specific interventions on relationship skills-like respecting boundaries, identifying warning signs of abuse, or talking about sexual preferences-are too rare, particularly for autistic individuals. The goal of this study was to collect formative data from autistic emerging adults to help create a new, six-session workshop for autistic young adults to support healthy peer relationships. Twenty-five autistic youth aged 16-22 years old were interviewed.What this paper adds? The participants described a need for more and better information about how to support lasting friendships, deal with their anxiety about relationships, and know when friendships or dating relationships were reciprocal and rewarding versus unhealthy.Implications for practice, research, or policy. The results reveal a need for a new and effective intervention that supports healthy relationship skills for autistic people.

Parent training intervention for autism symptoms, functional emotional development, and parental stress in children with autism disorder: A randomized clinical trial.

OBJECTIVE: Today, early interventions to treat autistic children through parent training interventions is of outmost importance. Interventions are focused on developmental or behavioral approaches and are mostly individual or group ones. In the present study, both proposed approaches in the form of structured individual and group parent training sessions among Iranian families are investigated. METHOD: This study was a randomized clinical trial which was performed in 2019-2020 in Tehran. Forty four 3-5 year-old children with autism participated in the study and were assigned to experimental (n = 22) and control (n = 22) groups through block randomization method. To evaluate the effectiveness of therapy on autism symptoms, Gilliam Autism Rating and Functional Emotional Assessment Scales were used. Also, Parenting Stress Index and Quality of Life Questionnaire were implemented to investigate the secondary effects of the therapy. After 12 therapy sessions, both groups took the posttest and 3 months later, follow up evaluations were performed. RESULTS: The treatment group manifested significant improvement regarding autism symptoms in both the posttest and follow up (ŋ2 = .77, P < .05) as well as Functional Emotional Development (ŋ2 = .62, P < .05). Comparing the means indicates that the experimental group mean score is significantly higher in quality of life and lower in parenting stress than the control group's. CONCLUSION: Parent training is effective on autism symptoms and functional emotional development. Regarding the fact that the follow-up phase coincided with Covid-19 pandemic and quarantine, it can be concluded that the therapy has been successful in maintaining the attained capabilities.

The Digital Divide in Technologies for Autism: Feasibility Considerations for Low- and Middle-Income Countries.

Digital technologies have the potential to empower individuals with autism and their families. The COVID-19 pandemic emphasized and accelerated the drive towards technology for information, communication, training, clinical care and research, also in the autism community. However, 95% of individuals with autism live in low- and middle-income countries (LMIC) where access to electricity, internet and the ever-increasing range of digital devices may be highly limited. The World Bank coined the term 'the digital divide' to describe the disparities in access to digital technologies between high-income and LMIC contexts. Here we evaluated the feasibility of six emerging technologies for autism spectrum disorders, and reflected on key considerations for implementation in LMIC contexts to ensure that we do not inadvertently widen the pre-existing digital divide.

COVID-19 health and social care access for autistic people: European policy review.

BACKGROUND: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services. METHODS: We reviewed policies from 15 European member states, published in March-July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers. RESULTS: Autistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support. CONCLUSIONS: The COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.

Protocol for a randomized pilot study (FIRST STEPS): implementation of the Incredible Years-ASLD® program in Spanish children with autism and preterm children with communication and/or socialization difficulties.

Having access to parenting interventions in the early years is key to improve the developmental outcomes of children with neurodevelopmental problems. The Incredible Years® (IY) Parent Program is a group intervention that has demonstrated efficacy in terms of reducing stress in parents, as well as improving behavioral, emotional, and social outcomes in children. The program has been recently adapted for families of children with autism or language delays (IY-ASLD®). This intervention has not yet been implemented in the Spanish Public Health System, where there is a scarcity of evidence-based interventions being offered to families with young children presenting neurodevelopmental problems. The main aims of this study are to determine the feasibility of implementing the IY-ASLD® program within Spanish Child Mental Health Services and to examine parents' acceptability and satisfaction with the intervention. As a secondary objective, we aim to evaluate its preliminary effectiveness in terms of reducing parental stress and behavioral difficulties in their children. The FIRST STEPS study is a multicenter, pilot randomized controlled trial comparing the IY-ASLD® program with a treatment-as-usual (TAU) condition. Approximately 70 families of children with autism spectrum disorder (ASD) and preterm children with communication and/or socialization difficulties (aged 2-5 years) will be recruited. Families will be assessed prior to randomization and after the intervention. Due to the COVID-19 pandemic, the intervention will consist of 22 weekly online sessions (approximately 6 months). The FIRST STEPS pilot trial will demonstrate the feasibility and acceptability of reliably implementing the IY-ASLD® program within the Spanish Public Health System. The results of this study could represent the first step to inform policymakers in Spain when designing evidence-based healthcare pathways for families of children presenting ASD symptoms or neurodevelopmental difficulties at early stages. TRIAL REGISTRATION: ClinicalTrials.gov NCT04358484 . Registered on 04 April 2020.