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.
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.
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.
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.
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).
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.
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.
This study is registered with ClinicalTrials.gov: NCT03711799.
Most autistic adults struggle with mental health problems, and traditional mental
health services generally do not meet their needs. This study used qualitative
methods to identify ways to improve ...community mental health services for
autistic adults for treatment of their co-occurring psychiatric conditions. We
conducted semistructured, open-ended interviews with 22 autistic adults with
mental healthcare experience, 44 community mental health clinicians, and 11
community mental health agency leaders in the United States. The participants
identified clinician-, client-, and systems-level barriers and facilitators to
providing quality mental healthcare to autistic adults. Across all three
stakeholder 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, which can result
in autistic adults being turned away from services when they contact the mental
health division and disclose their autism diagnosis during the intake process.
Further efforts are needed to train clinicians to work more effectively with
autistic adults and to increase coordination between the mental health and
developmental disabilities systems.
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.
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.
Few studies examine the effectiveness of community-based early interventions in unselected samples of autistic children, especially those from minoritized backgrounds. These types of studies require ...attention to strategies for recruitment, retention, data collection, and support for community providers beyond those used in university-based trials. We conducted a pilot trial of Project ImPACT, a promising caregiver-mediated naturalistic developmental behavioral intervention, in partnership with the early intervention system in a poor, large city. We assessed recruitment and retention strategies, training protocol, and measurement battery. We recruited representative provider and family samples, and had good measure completion among retained participants. Retention varied by study arm, providers had relatively poor fidelity to the intervention despite substantial support, and our measures did not appear sensitive to change. Lessons learned include the need for (a) a ramp-up training period prior to starting the study, (b) intensive implementation supports, and (c) additional strategies for family retention.
Many children diagnosed with autism spectrum disorder who receive early intervention reap developmental benefits, but little is known about characteristics of early intervention placements in the ...community that optimize individual growth. The extent to which children hear and use language, in particular, may contribute significantly to developmental outcomes. We analyzed natural language production and exposure to language in preschoolers on the autism spectrum across three classroom compositions: autism only, mixed disability, and inclusion. Autistic children in inclusion classrooms produced more speech, received significantly more verbal input from their peers, and were exposed to a similar amount of teacher talk compared to children in autism only or mixed disability classrooms. These findings shed preliminary light on the linguistic environment of early intervention placements in the community, along with the characteristics of children placed in early intervention settings that may influence their language exposure from peers and teachers. Natural language sampling is a promising method for capturing language exposure in early intervention settings and providing context for understanding developmental outcomes resulting from early intervention.
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.
This study examined factors associated with 9-month outcomes of 78 preschoolers with autism spectrum disorder (ASD; 66 males, mean age = 44.8 7.0 months) receiving preschool special education ...services. Use of recommended intervention practices was observed in each student’s primary educational setting: autism-only (n = 28), mixed-disability (n = 25), and general early education (n = 25). Recommended practice use across setting types and developmental changes were compared using generalized estimating equations. Autism-only settings had the highest implementation of classroom structure, classroom environment, and curriculum and instruction. General early education had greater implementation of practices to support social and peer relationships. Supporting social and peer relationships was the largest predictor of gains, controlling for setting type; the association was greater for children with lower initial receptive language or developmental skills. These findings highlight the importance of supporting and promoting peer engagement in students with ASD across preschool placement types.
•Parents’ social network size can predict the number of autism services they access.•English speakers may be accessing more autism services than non-English speakers.•Linguistic minorities in areas ...with few resources need additional support.•Future studies could target expanding social network to improve service engagement.
Numerous studies have shown that racial/ethnic minority and under-resourced families face barriers that delay timely access to autism services. These barriers include lack of resources and information about autism, financial hardship, mistrust in the service system, cultural and language mismatch, and other factors that have yet to be identified.
The current study aimed to examine additional caregiver and system-level factors that could be associated with early service access using a diverse sample from four study sites (Los Angeles, CA; Philadelphia, PA; Sacramento, CA; and Rochester, NY). Partnering with community agencies that serve traditionally underrepresented groups, the research team recruited 118 caregivers of young children with autism who were low-income, English, Spanish or Korean speaking and had not accessed autism-specific services.
Regression analyses revealed that the total number of services accessed were associated with caregiver social network size (p = 0.011) but not by race, autism knowledge and caregiver agency. Among families receiving at least one non-autism specific service, a marginally significant interaction effect of site and primary language on total services received was observed (p = 0.06).
Findings suggest that caregivers’ social network connections are crucial in early service access, and future interventions could target increasing social networks to improve families’ service engagement. More attention for non-English speaking families, especially those living in areas with few supports in their native languages, is needed.