Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities.

Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research. We suggest community-academic partnerships as one promising approach that results in high-quality research built on cultural competency, respect, and shared decision making.

Alliance-Outcome Associations in a Community-Based Social Skills Intervention for Youth With Autism Spectrum Disorder.

Although the alliance is a consistent predictor of treatment outcomes in psychosocial interventions, few studies have examined this association among youth with autism spectrum disorder (ASD). In particular, youth-therapist alliance has never been examined in social skills interventions (SSIs), a common modality for this population. In this study, thirty-four youth with ASD (Mage = 12.41; 79% male) participated in a community-delivered, group-based SSI in a summer camp format led by eight Head Therapists (Mage = 32.12; 50% male). Early alliance and change in alliance over the course of the treatment were assessed via self- and observer-reported measures. Both self- and observer-rated alliance were associated with positive treatment outcomes as reported by parents (decreased problem behaviors) and other peers in the group (reciprocated friendship and social preference). These results provide the first evidence of the role of the alliance in an SSI for youth with ASD and add to the growing body of literature that demonstrates the importance of assessing and addressing the alliance in treatment for this population.

Multi-stage Screening in Early Intervention: A Critical Strategy for Improving ASD Identification and Addressing Disparities.

Health disparities in ASD detection affect children's access to subsequent interventions. We examined potential disparities in implementation of a multi-stage ASD screening and diagnostic evaluation protocol in Part C Early Intervention with 4943 children ages 14-36 months (mean 22.0 months; 62.9% boys, 73.3% children of color, 34.9% non-English-primary language, 64.5% publicly-insured). Participation and follow-through were high (64.9% and 65.3% at first- and second-stage screening, respectively, 84.6% at diagnostic evaluation). Logistic regressions identified predictors of screening participation and outcomes at each stage; demographic differences (race, language, public insurance) were observed only at first-stage screening and reflected higher participation for children of color and higher positive screens for publicly-insured children. Results suggest the multi-stage screening protocol shows promise in addressing disparities in early diagnosis.

A Systematic Review of Organizational and Workforce Interventions to Improve the Culture and Climate of Youth-Service Settings.

Both organizational culture and climate are associated with service quality and outcomes across youth-service settings. Increasing evidence indicates capacity of organizational interventions to promote a positive and effective culture and climate. Less is known about common intervention components across studies and service settings. The current systematic review reviewed 9223 citations and identified 31 studies, across six youth-service settings, measuring changes over time in organizational culture and climate following implementation of an organizational or workforce support intervention. Results highlight the promise of organizational interventions, a need for more comparison and randomized designs, and future directions for maximizing capacity of organizations to promote health for frontline providers and the children they serve.

What Drives Detection and Diagnosis of Autism Spectrum Disorder? Looking Under the Hood of a Multi-stage Screening Process in Early Intervention.

U.S. guidelines for detecting autism emphasize screening and also incorporate clinical judgment. However, most research focuses on the former. Among 1,654 children participating in a multi-stage screening protocol for autism, we used mixed methods to evaluate: (1) the effectiveness of a clinical decision rule that encouraged further assessment based not only on positive screening results, but also on parent or provider concern, and (2) the influence of shared decision-making on screening administration. Referrals based on concern alone were cost-effective in the current study, and reported concerns were stronger predictors than positive screens of time-to-complete referrals. Qualitative analyses suggest a dynamic relationship between parents' concerns, providers' concerns, and screening results that is central to facilitating shared decision-making and influencing diagnostic assessment.

Unimpaired attentional disengagement in toddlers with autism spectrum disorder.

A prominent hypothesis holds that 'sticky' attention early in life in children with autism spectrum disorder (ASD) limits their ability to explore and learn about the world. Under this hypothesis, the core clinical symptoms of ASD - restricted interests, repetitive behaviors and impaired social/communication abilities - could all result from impaired attentional disengagement during development. However, the existence of disengagement deficits in children with ASD is controversial, and a recent study found no deficit in 5- to 12-year-olds with ASD. Nonetheless, the possibility remains that disengagement is impaired earlier in development in children with ASD, altering their developmental trajectory even if the attentional deficit itself is remediated or compensated for by the time children with ASD reach school age. Here, we tested this possibility by characterizing attentional disengagement in a group of toddlers just diagnosed with ASD (age 21 to 37 months). We found strikingly similar performance between the ASD and age-matched typically developing (TD) toddlers, and no evidence of impaired attentional disengagement. These results show that even at a young age when the clinical symptoms of ASD are first emerging, disengagement abilities are intact. Sticky attention is not a fundamental characteristic of ASD, and probably does not play a causal role in its etiology.

Stability and individual change in depressive symptoms among mothers raising young children with ASD: maternal and child correlates.

Mothers raising children with Autism Spectrum Disorders (ASD) evidence elevated depressive symptoms, but symptom stability has not been examined. Mothers (N=143) of toddlers with ASD (77% boys) were enrolled and assessed when their children were 18 to 33 months old and followed annually for 2 years. Multilevel modeling revealed no significant change in group depressive symptom level, which was in the moderately elevated range (Intercept=13.67; SE=.96). In contrast, there was significant individual variation in change over time. Child problem behaviors and delayed competence, maternal anxiety symptoms and angry/hostile mood, low parenting efficacy and social supports, and coping styles were associated with depression severity. Only maternal anxiety and parenting efficacy predicted individual change. Many mothers do not appear to adapt, supporting the need for early intervention for maternal well-being.

Autism spectrum disorders in young children.

Retrospective research studies, videotape analyses of children later diagnosed with autism spectrum disorders (ASD), and recent studies on younger siblings of children diagnosed with ASD, at high-risk of ASD, provide evidence of the early signs of ASD in children as young as 12 months. This article provides a review of early identification, diagnostic assessment, and treatment for young children (0-5 years old) with ASD. Several screening tools as well as comprehensive assessment measures are described. The authors also discuss how the family context is affected by the diagnosis, in terms of adaptation to the diagnosis and to treatment. Finally, the authors present a brief review of interventions for young children with ASD.