Rett syndrome is a severe neurodevelopmental disorder that affects about 1 in 10,000 females. Clinical trials of disease modifying therapies are on the rise, but there are few psychometrically sound caregiver-reported outcome measures available to assess treatment benefit. We report on a new caregiver-reported outcome measure, the Rett Caregiver…

Early intervention with parent participation is important for facilitating skill development in children with Autism Spectrum Disorder (ASD). However, many barriers delay or prohibit families from accessing care. We describe the development and acceptability of a novel, comprehensive, self-directed online program for caregivers of children with…

Validated outcome measures with the capacity to reflect meaningful change are key to assessing potential interventions for autism spectrum disorder (ASD). We derive clinically meaningful change thresholds (MCTs) of the Autism Impact Measure (AIM) and identify factors associated with meaningful change. Baseline and 12-months follow-up survey of…

The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions…

Feasibility, acceptability and effectiveness data of a virtual adaptation of the WHO Caregiver Skills Training (CST; n = 25) were compared with those of a pilot RCT of CST delivered in person (n = 43) against treatment as usual (TAU; n = 43). Virtual CST was delivered with high levels of integrity, but received lower ratings in some caregiver- and…

PEERS® for Preschoolers (P4P) is a social skills group program for young autistic children and their caregivers, which provides everyday tools for interacting and communicating with others. Twenty-two caregiver-child dyads participated and completed pre-treatment, post-treatment, and follow-up measures (4-16 weeks after). Using single-subject…

A growing literature supports the feasibility and validity of telehealth-based assessments for autism spectrum disorder (ASD). Better understanding families' experiences is crucial for sustained use beyond the COVID-19 pandemic. This study qualitatively examines caregiver experiences with the Telehealth Evaluation of Development for Infants (TEDI)…

Telehealth is a promising modality for Part C early intervention (EI), services typically implemented face-to-face in home and community settings. Barriers to telehealth in EI reported prior to COVID-19 included lack of training and access to reliable internet. The abrupt telehealth shift at the onset of the pandemic did not permit a phased…

Mindfulness-based therapies are rising in popularity. However, evidence for their effectiveness in reducing psychological distress and enhancing wellbeing for families living with autism spectrum disorder (ASD) is limited. A systematic search identified 10 independent studies, involving a pooled sample of 233 children and adults with ASD and 241…

Children with autism spectrum disorder (ASD) are often delayed in achieving bowel continence, resulting in negative outcomes. In this pilot trial, 20 children with ASD and encopresis were randomly assigned to multidisciplinary intervention for encopresis (MIE; n = 10) or a waitlist control group (n = 10). The MIE group was treated for constipation…

The current meta-analysis comprehensively reviewed group-design studies of interventions designed to improve ASD caregiver psychosocial outcomes and explored potential moderators of effectiveness. Forty-one unique studies targeting 1771 caregivers met inclusion criteria. Overall, the interventions had a small positive effect in improving…

This study aimed to provide initial validity and reliability of the "Measure of NDBI Strategy Implementation-Caregiver Change" ("MONSI-CC"), a novel measure that captures changes in caregivers' implementation of NDBI strategies during early intervention. The MONSI-CC was applied to 119 observations of 43 caregiver-child dyads…

Research has demonstrated that caregivers' use of intervention strategies can support their children's social engagement and communication. However, it is not clear to what degree caregivers must master the strategies to effectively support gains in social communication, specifically, core challenges such as joint attention language (comments).…

Autism spectrum disorder (ASD) affects individuals across all racial and ethnic groups, yet rates of diagnosis are disproportionately higher for Black and Hispanic children. Caregivers of children with ASD experience significant stressors, which have been associated with parental strain, inadequate utilization of mental health services and lower…

Despite the psychosocial difficulties common among young adults with autism spectrum disorders (ASD), little to no evidence-based social skills interventions exist for this population. Using a randomized controlled trial (RCT) design, the current study tested the effectiveness of an evidence-based, caregiver-assisted social skills intervention…