Paul S. Carbone

To report results of the Caregiver Concerns Questionnaire (CCQ), a brief screening checklist that assessed the presence and severity of 19 developmental, behavioral, psychiatric and medical concerns expressed by caregivers of autistic children and to identify associations between CCQ items related to gastrointestinal and sleep problems with items related to maladaptive behaviors. We examined electronic health record data from children aged 2-17 years attending developmental specialty clinic visits whose caregivers completed the CCQ. Descriptive statistics and regression models were used for analysis. Among 2096 children on the autism spectrum with completed CCQs the mean number of items rated as moderate to severe was 7.60 (95% CI 7.41-7.79) and 7 of 19 items were rated as moderate to severe by > 50% of caregivers (social interactions, sensory issues, language use, anxiety, hyperactivity, attention span, and eating habits). There were differences in several CCQ item responses by age, sex and ethnicity. Caregivers of older children more often rated attention span, sensory issues, anxiety, mood swings, motor issues, and social interactions as moderate to severe problems than younger groups. There were associations between caregiver reported moderate to severe sleep and gastrointestinal problems with moderate to severe behavioral and psychiatric conditions (aggression, self-injury, anxiety, mood problems, hyperactivity). The Caregiver Concerns Questionnaire is a promising tool for ongoing care visits with children on the autism spectrum, quickly screening for common developmental issues and co-occurring conditions. Future studies could assess the utility of the CCQ in primary care settings.

To compare the national prevalence of meeting physical activity, screen time, and sleep guidelines between autistic and nonautistic children and identify factors associated with meeting these guidelines. Prevalences for each health-determining behavior were estimated using the 2022 National Survey of Children’s Health, using national guidelines. Complex survey-weighted logistic regression, adjusted for demographic covariates, was used to measure associations between autism and meeting each guideline, and to identify potential child, family, community, and policy-level determinants of each behavior among autistic children. The prevalence of meeting all three guidelines was low among autistic and nonautistic children across age groups. Physical activity guidelines were met at similarly low rates among autistic and nonautistic children; however, autistic children of all age groups were less likely to meet screen time guidelines, and those in the 3–5 and 6–11 years age groups were less likely to meet sleep guidelines. Moderate/severe autism, irregular bedtime, low parental education, and lacking a medical home were associated with lower likelihood of meeting sleep guidelines. Irregular bedtime and high income were associated with lower likelihood of meeting physical activity guidelines. Autistic children meet guidelines for physical activity, screen time, and sleep at a low prevalence and less than their nonautistic peers. Clinicians should develop individualized plans to facilitate adherence to guidelines among autistic children. Interventions should address modifiable factors, including bedtime regularity and access to medical homes. Further research and policy efforts should be made to improve adherence to guidelines among autistic children and subsequently reduce health disparities.

Purpose To report results of the Parent’s Observations of Social Interactions (POSI) and identify associations between POSI results with referrals for developmental evaluations and autism diagnoses. Methods We examined data from electronic health records of POSI-screened children attending 18- and 24-month health supervision visits from July 2018 to July 2022 for POSI screening results and autism diagnoses. Descriptive statistics and regression models were used for analysis. Results In 6669 POSI-screened children (age at follow-up, 42–107 months), 1065 of 4228 children screened at 18 months (25.2%) and 851 of 4896 children at 24 months (17.4%) screened positive. In 1079 children with positive POSI screenings, 233 children (21%) were referred for developmental evaluation. Autism was diagnosed in 184 of all 6669 children (2.8%). The POSI sensitivity for autism was 66.4% (95% CI 59.2–72.8%) and the positive predictive value was 9.2% (95% CI 7.4–10.6%). A positive POSI increased the likelihood of autism diagnosis at 18 months (adjusted odds ratio, 5.21; 95% CI 3.45–7.86) and 24 months (adjusted odds ratio 10.21; 95% CI 7.07–14.76). Autism was diagnosed 13 months earlier in children with a positive rather than negative POSI (35.5 vs 48.1 months; P < 0.001). Conclusion The POSI is a sensitive screening instrument for autism with a low positive predictive value (high percentage of false positive screenings), indicating the need for clarification about which children require further evaluation. Screening positive on the POSI was associated with a greater likelihood and earlier diagnosis of children with autism.

Objective: An expert commission has proposed the term “profound” autism for children on the spectrum who are minimally verbal or nonverbal and have intellectual disability (ID), behavioral challenges, and co-occurring conditions. It is unknown whether parents' rating of “severe” autism aligns with the definition of “profound” autism. Using the National Survey of Children's Health, we sought to (1) estimate the prevalence of parent-reported severe autism, (2) identify child characteristics that are associated with severe autism, (3) compare health care utilization, and (4) compare caregiver stress and resilience between families of children with severe versus mild/moderate autism. Methods: Parent responses on the 2018 to 2019 NSCH were used to compare school-age children with parent-reported severe autism and those with mild/moderate autism. Descriptive statistics, χ² tests, and logistic regression were used for statistical analysis. Results: Among parents of 1,368 US children with autism, 10.1% characterized their child's autism as severe, a prevalence of 1 in 333. Parents of children with severe autism were more likely to report ID (45% vs 12.1%, p < 0.001), language delay (88% vs 58.7%, p < 0.001), and difficulties in dressing and bathing (67% vs 19.2%, p < 0.001). Children with severe autism had more behavioral problems and co-occurring conditions but were no more likely to see specialists or receive autism-specific behavioral therapy. Their caregivers reported more stress and less resilience. Conclusion: The characteristics of “profound” autism and parent-reported “severe” autism significantly overlap, allowing the use of the NSCH for studies of this vulnerable population. Children with profound/severe autism could benefit from more behavioral therapy, specialty care, and family support.

The benefits of physical activity are likely universal for all children, including children and adolescents with disabilities (CWD). The participation of CWD in physical activity, including adaptive or therapeutic sports and recreation, promotes inclusion, minimizes deconditioning, optimizes physical functioning, improves mental health as well as academic achievement, and enhances overall well-being. Despite these benefits, CWD face barriers to participation and have lower levels of fitness, reduced rates of participation, and a higher prevalence of overweight and obesity compared with typically developing peers. Pediatricians and caregivers may overestimate the risks or overlook the benefits of physical activity in CWD, which further limits participation. Preparticipation evaluations often include assessment of health status, functional capacity, individual activity preferences, availability of appropriate programs, and safety precautions. Given the complexity, the preparticipation evaluation for CWD may not occur in the context of a single office visit but rather over a period of time with input from the child’s multidisciplinary team (physicians, coaches, physical education teachers, school nurses, adaptive recreation specialists, physical and occupational therapists, and others). Some CWD may desire to participate in organized sports to experience the challenge of competition, and others may prefer recreational activities for enjoyment. To reach the goal of inclusion in appropriate physical activities for all children with disabilities, child, family, financial, and societal barriers to participation need to be identified and addressed. Health care providers can facilitate participation by encouraging physical activity among CWD and their families during visits. Health care providers can create “physical activity prescriptions” for CWD on the basis of the child’s preferred activities, functional status, need for adaptation of the activity and the recreational opportunities available in the community. This clinical report discusses the importance of participation in sports, recreation, and physical activity for CWD and offers practical suggestions to health care providers.

Objective: To compare the perspectives of caregivers of children with autism receiving care at the Neurobehavior Healthy Outcomes Medical Excellence (HOME) Program, an interdisciplinary clinic that provides primary care and behavioral/mental health services for patients with autism and other developmental disabilities, with those responding to the 2016 National Survey of Children's Health (NSCH). We focused on ratings related to shared decision-making, care coordination, family-centered care, and care within a medical home. Methods: We administered a subset of items from the 2016 NSCH to caregivers of children with autism enrolled in HOME and compared responses with the same items from a nationally representative group of caregivers of children with autism who completed the 2016 NSCH. We compared the proportions that reported receiving shared decision-making, care coordination, family-centered care, care within a medical home, and unmet needs among the 2 study groups using Poisson regression, controlling for age, sex, race/ethnicity, payor, autism severity, and intellectual disability (ID). Results: Compared with the NSCH cohort (n = 1151), children enrolled in HOME (n = 129) were older, more often female, had severe autism, and had co-occurring ID. Caregivers perceived that children receiving care within HOME more often received family-centered, coordinated care within a medical home compared with a national sample of children with autism. HOME enrollees also reported increased access to behavioral treatments and adult transition services with less financial burden compared with the national sample. Conclusion: An interdisciplinary clinic model may best serve children with autism, especially those with higher severity symptoms and co-occurring conditions.

Video Abstract Video Abstract To describe the proportion of children screened by the Modified Checklist for Autism in Toddlers (M-CHAT), identify characteristics associated with screen completion, and examine associations between autism spectrum disorder (ASD) screening and later ASD diagnosis. We examined data from children attending 18- and 24-month visits between 2013 and 2016 from 20 clinics within a health care system for evidence of screening with the M-CHAT and subsequent coding of ASD diagnosis at age >4.75 years. We interviewed providers for information about usual methods of M-CHAT scoring and ASD referral. Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92–0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09–0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6–14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT’s sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns. A majority of children were screened for ASD, but disparities exist among those screened. Benefits for screen-positive children are improved detection and younger age of diagnosis. Performance of the M-CHAT can be improved in real-world health care settings by administering screens with fidelity and facilitating timely ASD evaluations for screen-positive children. Providers should continue to monitor for signs of ASD in screen-negative children.

Despite current guidelines, few children with autism spectrum disorder (ASD) receive genetic evaluations. We surveyed Utah pediatricians to characterize the knowledge, beliefs, current practices and perceived barriers of pediatricians regarding genetic evaluation of children with ASD. We found over half lacked knowledge of current guidelines and many held beliefs about genetic evaluation that did not align with guidelines. Barriers were lack of insurance coverage for genetic evaluation/testing and long wait times to see geneticists. Pediatricians with beliefs aligned with guidelines and those aware of the role of genetic counselors were more likely to adhere to guidelines. Efforts to educate pediatricians are needed along with system level solutions regarding availability of geneticists and reimbursement for genetic testing.

BACKGROUND AND OBJECTIVE: Poor adherence to recommended screening for autism spectrum disorder (ASD) and pediatricians’ lack of confidence in providing care for children with ASD reflect quality gaps in primary care. This study aimed to increase the proportion of toddlers screened for ASD and improve physicians’ self-efficacy in providing care to children with ASD. METHODS: Twenty-six Utah primary care practices participated in a 3 to 6 month learning collaborative (LC) to improve identification and ongoing care of children with ASD. Monthly chart audits assessed whether an ASD screening tool was administered at 18- and 24-month visits. Physicians completed pre-LC and post-LC surveys to assess changes in self-efficacy in providing care and changes in perceived barriers to implementation of screening and caring for children with ASD. RESULTS: Before the LC, 15% of 18- and 24-month visits had documented ASD screening, compared with 91% during the last month of the LC (P < .001). This rate of ASD screening was sustained 4 years after the LC by most practices. Compared with survey responses before the LC, physicians reported significant improvement in their ability to care for children with ASD and decreases in their perceived barriers to screening and caring for children with ASD. CONCLUSIONS: The LC was effective in increasing and sustaining recommended ASD screening of toddlers and improving physicians’ perceived self-efficacy in caring for children with ASD. Improving primary care screening, skills, and knowledge may improve the timing of diagnosis, initiation of treatment, quality of care, and outcomes for children with ASD.