"There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.

The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.

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.

Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework.

Proponents of autism intervention and those of the neurodiversity movement often appear at odds, the former advocating for intensive treatments and the latter arguing that autism must be accepted as a form of diversity. The history of behavioral intervention has understandably outraged many in the Autistic community, though many still value supports focused on quality of life. This commentary argues that Naturalistic Developmental Behavioral Interventions (NDBIs) hold promise for bridging the gap between early intervention and the neurodiversity movement. However, we recognize NDBIs have much room to grow and suggest multiple strategies for improvement. We believe these updates are not only feasible for clinicians and researchers to implement but will ultimately lead to improved quality of life for Autistic individuals.

Brief Report: Sex/Gender Differences in Adolescents with Autism: Socialization Profiles and Response to Social Skills Intervention.

Females with autism have unique socialization profiles, but less is known about sex/gender differences in the context of socialization interventions. This study utilized a combination of behavioral and survey measures to examine sex/gender differences in 32 autistic adolescents (10 females, 22 males) before and after participation in the 20-week START socialization program. At intake, males self-reported superior social skills use while parents endorsed that females demonstrated superior social competencies. While males and females both experienced socialization improvements post-trial, females experienced greater increases in self-reported social competency and the proportion of questions they asked during peer conversations. These preliminary findings on differential intervention response may help inform future social skill intervention efforts for the needs of females on the spectrum.

Social Interaction Skill Intervention for Autistic Adults with Intellectual Disability and Limited Language: A Pilot of the SKILL Program.

There is a dearth of research that focuses on social intervention efforts for adults on the autism spectrum with intellectual disability and limited conversational language. Using a multiple baseline experimental design, this pilot investigation of the Socialization Knowledge for Individuals with Limited Language (SKILL) program evaluated a novel peer-facilitated group program specifically designed to target social interaction skills for this population. Findings from five pilot participants yielded evidence of social improvements across specific verbal skills (on-topic conversational contributions and responses) and nonverbal behaviors (eye-contact, active listening), as evidenced by coded social conversation probes and parent-report measures. These findings demonstrate the promise of a socialization intervention for a population that has historically been neglected in the social intervention research literature.

The Use of Eye Tracking as a Biomarker of Treatment Outcome in a Pilot Randomized Clinical Trial for Young Children with Autism.

There is a pressing need for objective, quantifiable outcome measures in intervention trials for children with autism spectrum disorder (ASD). The current study investigated the use of eye tracking as a biomarker of treatment response in the context of a pilot randomized clinical trial of treatment for young children with ASD. Participants included 28 children with ASD, aged 18-48 months, who were randomized to one of two conditions: Pivotal Response Intervention for Social Motivation (PRISM) or community treatment as usual (TAU). Eye-tracking and behavioral assessment of developmental functioning were administered at Time 1 (prior to randomization) and at Time 2 (after 6 months of intervention). Two well-established eye-tracking paradigms were used to measure social attention: social preference and face scanning. As a context for understanding relationships between social attention and developmental ability, we first examined how scanning patterns at Time 1 were associated with concurrent developmental functioning and compared to those of 23 age-matched typically developing (TD) children. Changes in scanning patterns from Time 1 to Time 2 were then compared between PRISM and TAU groups and associated with behavioral change over time. Results showed that the social preference paradigm differentiated children with ASD from TD children. In addition, attention during face scanning was associated with language and adaptive communication skills at Time 1 and change in language skills from Time 1 to Time 2. These findings highlight the importance of examining targeted biomarkers that measure unique aspects of child functioning and that are well-matched to proposed mechanisms of change. Autism Research 2019, 12: 779-793. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Biomarkers have the potential to provide important information about how and why early interventions effect positive change for young children with ASD. The current study suggests that eye-tracking measures of social attention can be used to track change in specific areas of development, such as language, and points to the need for targeted eye-tracking paradigms designed to measure specific behavioral changes. Such biomarkers could inform the development of optimal, individualized, and adaptive interventions for young children with ASD.

A Pilot Randomized Clinical Trial of an Enhanced Pivotal Response Treatment Approach for Young Children with Autism: The PRISM Model.

The symptoms of autism spectrum disorder are conceptualized to alter the quality of parent-children interactions, exposure to social learning exchanges, and ultimately the course of child development. There is evidence that modifying the procedures of Pivotal Response Treatment (PRT) to explicitly target social motivation enhances child engagement and parent-child synchrony in moment-by-moment exchanges. However, it is unclear if these within session improvements ultimately yield favorable developmental outcomes over time. The current investigation presents feasibility, utility, and preliminary efficacy data of a pilot randomized clinical trial (RCT) of a Pivotal Response Intervention for Social Motivation (PRISM) model. Data on participant factors, treatment protocol acceptability, and outcome variance and effect size are highly favorable and support the pursuit of a future, large scale RCT.

Social conversation skill improvements associated with the Social Tools And Rules for Teens program for adolescents with autism spectrum disorder: Results of a randomized controlled trial.

There has been a significant increase in the development of interventions to improve the social competence and success of adolescents with autism spectrum disorder. The current investigation used direct observation and coding of social conversations as a rigorous method to further assess the efficacy of the Social Tools And Rules for Teens socialization intervention for adolescents with autism spectrum disorder in the context of a randomized controlled trial. A total of 35 adolescents with high-functioning autism spectrum disorder were randomized to either a treatment or waitlist control group. The 20-week group intervention took place once a week for 90 min per session. Brief video-recorded conversations between participants and unfamiliar, untrained peers were recorded at pre- and post-time points and coded for selected social behaviors (i.e. questions asked, positive facial expressions, and mutual engagement). Results revealed a significant Group × Time treatment effect for both questions asked and positive facial expressions. The findings support that the Social Tools And Rules for Teens intervention can positively impact specific, observable social behaviors through systematic coding of live social conversations within the context of a randomized controlled trial. This investigation is one of the first randomized controlled trials of a group socialization intervention to use systematic coding of live social conversations to assess social competence improvements.

Social Tools And Rules for Teens (The START Program): Program Description and Preliminary Outcomes of an Experiential Socialization Intervention for Adolescents with Autism Spectrum Disorder.

Experiential learning is an essential process in the development of core social competencies. Unfortunately, adolescents with autism spectrum disorders often do not possess the prerequisite skillset and motivation to sustain the level of social immersion needed to benefit from this learning process. These persisting social vulnerabilities can limit their long-term relational success and associated quality of life, creating a need for comprehensive social programming. This paper describes a multi-component socialization intervention that simultaneously targets motivational, conceptual, and skill deficits using a hybrid experiential/didactic treatment approach. Evidence of social competence improvements was noted in survey and live conversational measures, indicating that the START program may hold promise as a method for improving the social success of participating adolescents with ASD.

Fostering a social child with autism: a moment-by-moment sequential analysis of an early social engagement intervention.

Young children with autism often experience limited social motivation and responsiveness that restricts establishment of crucial social momentum. These characteristics can lead to decreased opportunities for parental engagement and the social learning associated with these moments. Early social interventions that capitalize on pre-existing interests may be able to re-establish this developmentally critical feedback loop, in which both child and parent social behaviors simultaneously increase and influence one another. This investigation examined the moment-by-moment, micro-transactional relationship between parent and child social behavior gains observed in an early intervention study. Time-window sequential analyses revealed the presence of clinically and statistically significant sequential associations between parent and child social behaviors during an embedded social interaction intervention, but not in a comparable motivational intervention that utilized highly preferred toys and objects. Specifically, the onset of parent eye contact, directed positive affect, or offer of a reinforcing incentive predicted the immediate occurrence of child eye contact and positive affect in the experimental social intervention condition. Additionally, child verbal initiations, positive affect, and eye contact immediately predicted the onset of parent positive affect during this social intervention paradigm. Theoretical implications for the social developmental trajectory of autism are discussed.

An early social engagement intervention for young children with autism and their parents.

The social vulnerabilities associated with young children with autism are recognized as important intervention targets due to their influence on subsequent development. Current research suggests that interventions that combine motivational and social components can create meaningful changes in social functioning. Simultaneously, it is hypothesized that parent delivery of such strategies can invoke increases in these core social behaviors and parent engagement. This study examined the effects of teaching parents to implement a social engagement intervention with their children. The results indicated that the use of this parent-delivered social intervention led to (a) increases in their children's use of eye contact, directed positive affect, and verbal initiations, (b) increases in parent positive affect and synchronous engagement, and (c) generalized increases in parent and child behaviors.

Improving social initiations in young children with autism using reinforcers with embedded social interactions.

Children with autism often exhibit low levels of social engagement, decreased levels of eye contact, and low social affect. However, both the literature and our direct clinical observations suggest that some components of intervention procedures may result in improvement in child-initiated social areas. Using an ABAB research design with three children with autism, this study systematically assessed whether embedding social interactions into reinforcers, delivered during language intervention, would lead to increased levels of child-initiated social behaviors. We compared this condition with a language intervention condition that did not embed social interactions into the reinforcers. Results indicated that embedding social interactions into the reinforcers resulted in increases in child-initiated social engagement during communication, improved nonverbal dyadic orienting, and improvements in general child affect. Theoretical and applied implications are discussed.