Centering Autistic Perspectives: Social Acceptability of Goals, Learning Contexts, and Procedures for Young Autistic Children.

Despite the importance of centering autistic perspectives in educational decision-making for autistic children, few studies have directly assessed autistic perspectives on the social acceptability of early childhood practices. We conducted an online survey to recruit perspectives of autistic adults on a current, comprehensive range of educational practices typically employed with autistic children. We also extended the survey to caregivers and early childhood practitioners, to identify commonalities and discrepancies between shareholder groups. We conducted a descriptive survey study to assess social acceptability of goals, learning contexts, and procedures typically implemented with young autistic children. We received responses from 660 individuals, 226 of whom identified as autistic. For Likert scale and ranked items, we reported median rating and ranking for each item, by shareholder group. For open-ended questions, we conducted open and axial coding, to determine consistent themes within and across shareholder groups. Respondents reported (a) high acceptability for goals promoting self-determination and low social validity for goals promoting masking; (b) high acceptability for antecedent interventions and low social validity for some forms of extinction; (c) that appropriate learning environments are highly context dependent, varying with individual needs; and (d) that the child is the most important shareholder in educational decision-making. We make recommendations to practitioners in response to survey results, including (a) respecting autistic culture and characteristics in selecting goals; (b) considering social, emotional, and psychological needs in selecting procedures; and (c) individualizing goals, learning contexts, and procedures based on the child's perspectives and unique needs.

Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery.

BACKGROUND: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD. In the context of the COVID-19 pandemic, this service model shifted to telemedicine-only service delivery, resulting in an opportunity to analyze intervention outcomes from services delivered either via traditional in-person visits, telemedicine-only sessions, or a hybrid model including both in-person and telemedicine sessions. METHODS: Data are presented for 115 families with toddlers 16-33 months of age who participated in a six-session behavioral intervention and support service model either in-person, through telemedicine, or through a hybrid service model. This intervention was available for families referred for ASD evaluation through the state Part C early intervention program. Intervention feasibility, fidelity of implementation, child outcomes, and stakeholder satisfaction are compared across service delivery models. RESULTS: Caregivers, behavioral consultants, and Part C early intervention providers reported satisfaction with services, regardless of service delivery model. Caregivers and consultants also reported positive child outcomes. Statistically significant differences emerged for caregiver- and consultant-reported child outcomes in some domains, with stakeholders in the telemedicine-only group reporting slightly less improvement, compared to stakeholders in the in-person-only group. Caregivers and consultants in the telemedicine-only group also provided qualitative feedback on benefits and challenges related to telemedicine services. CONCLUSIONS: Both caregivers and behavioral consultants reported positive outcomes following a brief behavioral intervention and support model targeted at families of young children with concern for ASD. Stakeholders reported improvement in child behavior and satisfaction with services across in-person, telemedicine-only, and hybrid models of service delivery. These results suggest that telemedicine presents a promising opportunity for increasing service access. Additional research is needed to continue optimizing the experience of telemedicine-based service delivery for both families and intervention providers.

Parent Perceptions of Caregiver-Mediated Telemedicine Tools for Assessing Autism Risk in Toddlers.

Telemedicine tools have potential for increasing access to diagnostic services for children with autism spectrum disorder (ASD). Past work has utilized tele-assessment procedures in which remote psychologists observe administration of interactive screening instruments by trained, on-site providers. Although promising, this approach relies on two clinicians, limiting its efficiency and scalability. The present study examined the use, acceptability, and parents' perceptions of two caregiver-mediated tools for assessing ASD risk in toddlers, in which remote clinicians guided parents to complete interactive screening activities with their children. Most parents found tele-assessment to be comfortable, and many reported liking the parent-led nature of these tools. Parents also offered constructive feedback, which was used to modify the tele-assessment process for future study.

Addressing Challenging Behavior During Hospitalizations for Children with Autism: A Pilot Applied Behavior Analysis Randomized Controlled Trial.

This study evaluated the feasibility, acceptance, and potential clinical benefit of brief applied behavior analysis (ABA)-based interventions for children and adolescents with autism spectrum disorder (ASD) displaying challenging behaviors during hospitalizations. Participants included 36 children diagnosed with ASD, 6-17 years of age, who were medically or psychiatrically hospitalized. Children in the intervention group received a brief ABA intervention and were compared to children in the evaluation and monitoring-only group. Families and staff recommended the intervention, children receiving the intervention demonstrated significantly more improvement in unblinded ratings of clinical severity, data from physicians indicated a positive effect of the intervention on levels of staffing and restraints and attending medical providers universally reported satisfaction and benefit of the intervention. Improvements in challenging behaviors were not significantly different as reported by parents, and the length of hospitalization did not differ between the groups. Ultimately, the outcomes of this pilot study suggest incorporating specialized ABA-based assessment and intervention during hospitalization may be feasible and well accepted by clinicians and families. However, future research must address potent methodological challenges related to capturing meaningful data during hospitalizations in order to answer questions of ultimate pragmatic, clinical, and system-level benefits. Trial Registration ClinicalTrials.gov Identifier NCT02339935, Registered 16 January 2015, First participant consented 23 February 2015. Autism Res 2020, 13: 1072-1078. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Inpatient hospitalizations for children with autism spectrum disorder (ASD) and severe behavior are common, challenging, and costly in terms of human experience. This study evaluated the benefit of brief applied behavior analysis-based interventions to children and adolescents with ASD displaying challenging behaviors during hospitalizations. Families and staff evaluating the procedures noted perceived potential benefits of the intervention, but this initial pilot study did not document changes in hospitalization length or blinded rating of improvement.

Mindfulness-Based Stress Reduction for Parents Implementing Early Intervention for Autism: An RCT.

BACKGROUND AND OBJECTIVES: Systems of care emphasize parent-delivered intervention for children with autism spectrum disorder (ASD). Meanwhile, multiple studies document psychological distress within these parents. This pilot longitudinal randomized controlled trial compared the parent-implemented Early Start Denver Model (P-ESDM) to P-ESDM plus mindfulness-based stress reduction (MBSR) for parents. We evaluated changes in parent functioning during active treatment and at follow-up. METHODS: Participants included children (<36 months old) with autism spectrum disorder and caregivers. Participants were randomly assigned to P-ESDM only (n = 31) or P-ESDM plus MBSR (n = 30). Data were collected at baseline, midtreatment, the end of treatment, and 1, 3, and 6 months posttreatment. Multilevel models with discontinuous slopes were used to test for group differences in outcome changes over time. RESULTS: Both groups improved during active treatment in all subdomains of parent stress (ß = -1.42, -1.25, -0.92; P < 0.001), depressive symptoms, and anxiety symptoms (ß = -0.62 and -0.78, respectively; P < 0.05). Parents who received MBSR had greater improvements than those receiving P-ESDM only in parental distress and parent-child dysfunctional interactions (ß = -1.91 and -1.38, respectively; P < 0.01). Groups differed in change in mindfulness during treatment (ß = 3.15; P < .05), with P-ESDM plus MBSR increasing and P-ESDM declining. Treatment group did not significantly predict change in depressive symptoms, anxiety symptoms, or life satisfaction. Differences emerged on the basis of parent sex, child age, and child behavior problems. CONCLUSIONS: Results suggest that manualized, low-intensity stress-reduction strategies may have long-term impacts on parent stress. Limitations and future directions are described.

Measuring the service system impact of a novel telediagnostic service program for young children with autism spectrum disorder.

As prevalence of autism spectrum disorder continues to increase, so too does the need for timely, accessible diagnostic consultation. The present work extends from a previous study which provided preliminary evidence for the feasibility of expert clinicians to utilize telemedicine to triage autism spectrum disorder risk in young children. However, it did not examine whether a telediagnostic model had a demonstrable impact on tertiary care center referrals and usage. We therefore examined whether the introduction of telemedicine-based diagnostic consultation for families served by a rural medical facility affected referrals overall as well as to a metropolitan tertiary care diagnostic center. Results suggest that telemedicine diagnostic consultation in partnership with a referring early intervention system may positively impact referrals for diagnostic evaluation as well as the ability of families to schedule and attend appointments.

Early Identification of ASD Through Telemedicine: Potential Value for Underserved Populations.

Increasing access to diagnostic services is crucial for identifying ASD in young children. We therefore evaluated a telemedicine assessment procedure. First, we compared telediagnostic accuracy to blinded gold-standard evaluations (n = 20). ASD cases identified via telemedicine were confirmed by in-person evaluation. However, 20% of children diagnosed with ASD in-person were not diagnosed via telemedicine. Second, we evaluated telediagnostic feasibility and acceptability in a rural catchment. Children (n = 45) and caregivers completed the telemedicine procedure and provided feedback. Families indicated high levels of satisfaction. Remote diagnostic clinicians diagnosed 62% of children with ASD, but did not feel capable of ruling-in or out ASD in 13% of cases. Findings support preliminary feasibility, accuracy, and clinical utility of telemedicine-based assessment of ASD for young children.

Outcome summaries of latency-based functional analyses conducted in hospital inpatient units.

Latency-based functional analysis (FA) may be a viable alternative to the standard, rate-based, FA when frequently evoking problem behavior is not advisable. We conducted 18 latency-based FAs of the problem behavior of children diagnosed with autism in inpatient hospital settings and identified functional relations during 44.4% (8 of 18) of latency-based FAs. Implications for conducting FAs of severe problem behavior are discussed.

Children with severe developmental disabilities and behavioral disorders have increased special healthcare needs.

We studied whether children with severe developmental disabilities (SDDs) who have a comorbid behavioral disorder also have higher rates of special healthcare needs (SHCNs). We used a matched-comparison control group design to establish whether SHCNs were higher in children with SDDs with behavioral disorders versus children with SDDs without behavioral disorders. Thirty-six children were matched for age (mean 12 y 6 mo; range 5 y 2 mo-18 y 8 mo), sex (24 males, 12 females), ethnicity (22 non-white), mental retardation level (22 moderate, eight severe, six profound), and Diagnostic and Statistical Manual of Mental Disorders, 4th edition axis I diagnosis (18 autism spectrum disorder, 10 specified syndrome, eight mental retardation not otherwise specified). Measures included the Achenbach Child Behavior Checklist, behavioral observation, health status examination, and Childhood Health Questionnaire (CHQ). Children with SDDs with behavioral disorders had significantly higher levels of SHCN, as measured by the CHQ and health status examination. Children with SDDs with behavioral disorders had a twofold higher incidence of SHCNs than children with SDDs without behavioral disorders. No difference was observed in the number or types of prescription medication that children received. The findings suggest that SHCNs contribute to the occurrence and/or intensity of behavioral disorders in children with SDD and may require interdisciplinary care coordination.