Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable.

INTRODUCTION: Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. METHODS: MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various "modules," which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). RESULTS: We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. CONCLUSION: Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD. TRIAL REGISTRATION: This study is registered with ClinicalTrials.gov: NCT03711799.

Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults.

Autistic individuals experience elevated risk for suicide ideation, attempts, and deaths. Little is known about how clinicians assess risk or intervene with suicidal autistic individuals. We surveyed 121 clinicians about use of suicide prevention practices with autistic and non-autistic clients. Clinicians reported greater self-efficacy in screening for suicide risk among non-autistic clients (p = 0.01). There were no statistically significant differences in whether they used standardized screening measures or in their reported normative pressure or attitudes towards screening. Clinicians reported similar rates of use of Safety Planning, an evidence-based suicide-prevention strategy, across groups, but greater acceptability for non-autistic clients (p < 0.001). These findings have implications for strategies to increase clinicians' adoption of these tools for autistic individuals.

Social language opportunities for preschoolers with autism: Insights from audio recordings in urban classrooms.

LAY ABSTRACT: Early intervention is important for preschoolers on the autism spectrum, but little is known about early intervention classrooms in the community. This study found that children with better language skills and lower autism severity have more verbal interactions with their classmates, especially in classrooms with typically developing peers (inclusion settings). Findings suggest that natural language sampling is a useful method for characterizing autistic children and their early intervention settings. In addition, natural language sampling may have important implications for understanding individual opportunities for development in community early intervention settings.

Concordance between a U.S. Educational Autism Classification and the Autism Diagnostic Observation Schedule.

States in the United States differ in how they determine special education eligibility for autism services. Few states include an autism-specific diagnostic tool in their evaluation. In research, the Autism Diagnostic Observation Schedule (ADOS for first edition, ADOS-2 for second edition) is considered the gold-standard autism assessment. The purpose of this study was to estimate the proportion of children with an educational classification of autism who exceed the ADOS/ADOS-2 threshold for autism spectrum (concordance rate). Data were drawn from 4 school-based studies across 2 sites (Philadelphia, Pennsylvania, and San Diego, California). Participants comprised 627 children (2-12 years of age; 83% male) with an autism educational classification. Analyses included (a) calculating the concordance rate between educational and ADOS/ADOS-2 classifications and (b) estimating the associations between concordance and child's cognitive ability, study site, and ADOS/ADOS-2 administration year using logistic regression. More San Diego participants (97.5%, all assessed with the ADOS-2) met ADOS/ADOS-2 classification than did Philadelphia participants assessed with the ADOS-2 (92.2%) or ADOS (82.9%). Children assessed more recently were assessed with the ADOS-2; this group was more likely to meet ADOS/ADOS-2 classification than the group assessed longer ago with the ADOS. Children with higher IQ were less likely to meet ADOS/ADOS-2 classification. Most children with an educational classification of autism meet ADOS/ADOS-2 criteria, but results differ by site and by ADOS version and/or recency of assessment. Educational classification may be a reasonable but imperfect measure to include children in community-based trials.

"I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults.

LAY ABSTRACT: Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians' limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options.

Factors Influencing the Use of Cognitive-Behavioral Therapy with Autistic Adults: A Survey of Community Mental Health Clinicians.

Cognitive-behavioral therapy (CBT) can improve anxiety and depression in autistic adults, but few autistic adults receive this treatment. We examined factors that may influence clinicians' use of CBT with autistic adults. One hundred clinicians completed an online survey. Clinicians reported stronger intentions (p = .001), more favorable attitudes (p < .001), greater normative pressure (p < .001), and higher self-efficacy (p < .001) to start CBT with non-autistic adults than with autistic adults. The only significant predictor of intentions to begin CBT with clients with anxiety or depression was clinicians' attitudes (p < .001), with more favorable attitudes predicting stronger intentions. These findings are valuable for designing effective, tailored implementation strategies to increase clinicians' adoption of CBT for autistic adults.

Reduced Eating Pace (RePace) Behavioral Intervention for Children Prone to or with Obesity: Does the Turtle Win the Race?

OBJECTIVE: Rapid eating is a risk factor for childhood obesity but has not been a focus of intervention with young children. The short-term effects of a novel family-based treatment, "Reduced Eating Pace" (RePace), were tested on child eating speed and secondary outcomes. METHODS: Twenty-eight rapid eating children were randomized to RePace (n  = 14) or Delayed Usual Care Control (DUC) (n  = 14). RePace taught families a slower eating pace using psychoeducational and behavioral techniques, including silent vibrating devices that prompted 30-second "turtle bites." Outcomes included child "slowness in eating" assessed by parent-report questionnaire and observed eating in the laboratory (i.e., mouthfuls/minute and kilocalories/minute). Child BMI and other eating variables were secondary outcomes. RESULTS: Children in RePace compared with DUC showed increased "slowness in eating" (P  <  0.001), increased food enjoyment (P  = 0.04), and less BMI gain (P  = 0.02) after 8 weeks. There was no treatment effect for observed eating speed, although typicality of the laboratory test meal was an effect modifier in exploratory analyses. Specifically, RePace versus DUC showed attenuated increases in mouthfuls per minute over time among youth for whom the laboratory food amount was more typical of amounts served at home. CONCLUSIONS: Slower eating may be a novel target for family-based obesity prevention targeting high-risk children.