Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement.

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

Physical and Pharmacologic Restraint in Hospitalized Children With Autism Spectrum Disorder.

OBJECTIVES: Children with autism spectrum disorder (ASD) have high rates of cooccurring conditions and are hospitalized longer and more frequently than children without ASD. Little is known about use of involuntary physical or pharmacologic restraint in hospitalized children with ASD. This study compares use of restraint because of violent or self-injurious behavior during inpatient pediatric hospitalization in children with ASD compared with typical peers. METHODS: This retrospective cohort study examines electronic health records of all children aged 5 to 21 years admitted to a pediatric medical unit at a large urban hospital between October 2016 and October 2021. Billing diagnoses from inpatient encounters identified ASD and cooccurring diagnoses. Clinical orders identified physical and pharmacologic restraint. Propensity score matching ensured equivalency between ASD and matched non-ASD groups on demographic factors. Logistic regression determined the odds of restraint in children with ASD compared with children without ASD, controlling for hospitalization factors and cooccurring diagnoses. RESULTS: Of 21 275 hospitalized children, 367 (1.7%) experienced restraint and 1187 (5.6%) had ASD. After adjusting for reason for admission, length of stay, and cooccurring mental health, developmental, and behavioral disorders, children with ASD were significantly more likely to be restrained than children without ASD (odds ratio 2.3, 95% confidence interval 1.6-3.4; P < .001). CONCLUSIONS: Hospitalized children with ASD have significantly higher odds of restraint for violent or self-injurious behavior compared with children without ASD after accounting for reason for admission, length of hospitalization and cooccurring diagnoses. Work is needed to modify the hospital environment for children with ASD to reduce behavioral dysregulation and restraint.

Optimizing Care for Autistic Patients in Health Care Settings: A Scoping Review and Call to Action.

OBJECTIVE: We conducted a scoping review of interventions designed to improve the health care experiences of autistic individuals and assessed the methodology and outcomes used to evaluate them. METHODS: Literature from January 2005 to October 2020 was searched using PubMed, Excerpta Medica dataBASE (EMBASE), Cumulated Index to Nursing and Allied Health Literature (CINAHL), PsycINFO as well as hand searching. Studies included described an intervention for autistic individuals in inpatient or outpatient settings and evaluated the intervention using standardized methodology. Results were exported to Covidence software. Ten reviewers completed abstract screening, full text review, and then systematic data extraction of the remaining articles. Two reviewers evaluated each article at each stage, with a third reviewer arbitrating differences. RESULTS: A total of 38 studies, including three randomized controlled trials (RCTs) were included. Twenty-six (68%) took place in dental, psychiatric, or procedural settings. Interventions primarily focused on visit preparation and comprehensive care plans or pathways (N = 29, 76%). The most frequent outcome was procedural compliance (N = 15), followed by intervention acceptability (N = 7) and parent satisfaction (N = 6). Two studies involved autistic individuals and caregivers in study design, and no studies assessed racial/ethnic diversity on intervention impact. CONCLUSIONS: Well-designed evaluations of interventions to support autistic individuals in pediatric health care settings are limited. There is a need to conduct large multi-site intervention implementation studies.

Effect of Family Navigation on Participation in Part C Early Intervention.

OBJECTIVE: Part C Early Intervention (EI) services have been shown to reduce autism symptoms and promote healthy development among young children. However, EI participation remains low, particularly among children from structurally marginalized communities. We investigated whether family navigation (FN) improved EI initiation following positive primary care screening for autism compared to conventional care management (CCM). METHODS: We conducted a randomized clinical trial among 339 families of children (ages 15-27 months) who screened as having an increased likelihood for autism at 11 urban primary care sites in 3 cities. Families were randomized to FN or CCM. Families in the FN arm received community-based outreach from a navigator trained to support families to overcome structural barriers to autism evaluation and services. EI service records were obtained from state or local agencies. The primary outcome of this study, EI service participation, was measured as the number of days from randomization to the first EI appointment. RESULTS: EI service records were available for 271 children; 156 (57.6%) children were not engaged with EI at study enrollment. Children were followed for 100 days after diagnostic ascertainment or until age 3, when Part C EI eligibility ends; 65 (89%, 21 censored) children in the FN arm and 50 (79%, 13 censored) children in the CCM arm were newly engaged in EI. In Cox proportional hazards regression, families receiving FN were approximately 54% more likely to engage EI than those receiving CCM (1.54 (95% confidence interval: 1.09-2.19), P = .02). CONCLUSIONS: FN improved the likelihood of EI participation among urban families from marginalized communities.

Lifetime Earning Potential and Workforce Distribution in Developmental and Behavioral Pediatrics.

OBJECTIVES: Compare lifetime earning potential (LEP) for developmental and behavioral pediatrics (DBP) to general pediatrics and other pediatric subspecialties. Evaluate association between LEP for DBP and measures of workforce distribution. METHODS: Using compensation and debt data from 2018 to 2019 and a net present value analysis, we estimated LEP for DBP compared to general pediatrics and other pediatric subspecialties. We evaluated potential effects of eliminating educational debt, shortening length of fellowship training, and implementing loan repayment or forgiveness programs for pediatric subspecialists. We evaluated the association between LEP for DBP and measures of workforce distribution, including distance to subspecialists, percentage of hospital referral regions (HRRs) with a subspecialist, ratio of subspecialists to regional child population, and fellowship fill rates. RESULTS: LEP was lower for DBP than for general private practice pediatrics ($1.9 million less), general academic pediatrics ($1.1 million less), and all other pediatric subspecialties. LEP of DBP could be improved by shortening fellowship training or implementing loan repayment or forgiveness programs. LEP for subspecialists, including DBP, was associated with distance to subspecialists (-0.5 miles/$100,000 increase in LEP, 95% confidence interval [CI] -0.98 to -0.08), percentage of HRRs with a subspecialist (+1.1%/$100,000 increase in LEP, 95% CI 0.37-1.83), ratio of subspecialists to regional child population (+0.1 subspecialists/100,000 children/$100,000 increase in LEP, 95% CI 0.04-0.17), and average 2014 to 2018 fellowship fill rates (+1% spots filled/$100,000 increase in LEP, 95% CI 0.25-1.65). CONCLUSIONS: DBP has the lowest LEP of all pediatric fields and this is associated with DBP workforce shortages. Interventions to improve LEP may promote workforce growth.

Defining Developmental-Behavioral Pediatrics.

There is an insufficient number of specialty developmental-behavioral pediatrics (DBP) physicians, despite nearly 25% of children and adolescents having a developmental, learning, behavioral, or emotional problem. In the nearly 20 years since becoming a board-certified subspecialty, the definition of DBP clinical practice remains somewhat unclear. This lack of clarity likely contributes to recruitment challenges and workforce issues, and limited visibility of DBP among parents, other professionals, payors, and administrators. Defining DBP is therefore an important step in the survival and growth of the field. In this paper, we describe the methodology used to develop this definition along with the origins of DBP, the persistent challenges to defining its scope, what training in DBP involves, and what distinguishes DBP from other overlapping fields of medicine. We propose the following definition of DBP: developmental-behavioral pediatrics (DBP) is a board-certified, medical subspecialty that cares for children with complex and severe DBP problems by recognizing the multifaceted influences on the development and behavior of children and addressing them through systems-based practice and a neurodevelopmental, strength-based approach that optimizes functioning. Developmental behavioral pediatricians care for children from birth through young adulthood along a continuum including those suspected of, at risk for, or known to have developmental and behavioral disorders.

International Interprofessional Collaborative Office Rounds (iiCOR): Addressing Children's Developmental, Behavioral, and Emotional Health Using Distance Technology.

Developmental, behavioral, and emotional issues are highly prevalent among children across the globe. Among children living in low- and middle-income countries, these conditions are leading contributors to the global burden of disease. A lack of skilled professionals limits developmental and mental health care services to affected children globally. Collaborative Office Rounds are interprofessional groups that meet regularly to discuss actual cases from the participants' practices using a non-hierarchical, peer-mentoring approach. In 2017, International Interprofessional Collaborative Office Rounds was launched with several goals: to improve the knowledge and skills of practicing child health professionals in high and low resourced settings regarding developmental and mental health care, to support trainees and clinicians in caring for these children, and to promote best practice in diagnosis and management of these conditions. Five nodes, each comprised of 3-4 different sites with an interprofessional team, from 8 countries in North America, Africa, Asia, and South America met monthly via videoconferencing. This report describes and evaluates the first 2 years' experience. Baseline surveys from participants (N = 141) found that 13 disciplines were represented. Qualitative analysis of 51 discussed cases, revealed that all cases were highly complex. More than half of the cases (N = 26) discussed children with autism or traits of autism and almost all (N = 49) had three or more themes discussed. Frequently occurring themes included social determinants of health (N = 31), psychiatric co-morbidity (N = 31), aggression and self-injury (N = 25), differences with the healthcare provider (N = 17), cultural variation in accepting diagnosis or treatment (N = 19), and guidance on gender and sexuality issues (N = 8). Participants generally sought recommendations on next steps in clinical care or management. A survey of participants after year 1 (N = 47) revealed that 87% (N = 41) had expectations that were completely or mostly met by the program. Our experience of regular meetings of interprofessional groups from different countries using distance-learning technology allowed participants to share on overlapping challenges, meet continuing educational needs while learning about different approaches in high- and low-resourced settings. International Interprofessional Collaborative Office Rounds may prove a useful strategy for increasing the work force capacity for addressing developmental, behavioral, and emotional conditions worldwide. More systematic studies are needed.

Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder.

LAY ABSTRACT: Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time. Further, there were differences in the change in use of coping and the amount of negative family impact reported between Hispanic and non-Hispanic parents over time. These differences shed light on the unique experiences and strengths of Hispanic families demonstrate. Interventions that leverage those strengths and focus on education, empowerment, and resilience might be particularly beneficial for Hispanic families and may also better inform work to increase resilience.

Effect of Family Navigation on Diagnostic Ascertainment Among Children at Risk for Autism: A Randomized Clinical Trial From DBPNet.

Importance: Early identification of autism spectrum disorder (ASD) is associated with improved cognitive and behavioral outcomes. Targeted strategies are needed to support equitable access to diagnostic services to ensure that children from low-income and racial/ethnic minority families receive the benefits of early ASD identification and treatment. Objective: To test the efficacy of family navigation (FN), an individually tailored, culturally informed care management strategy, to increase the likelihood of achieving diagnostic ascertainment among young children at risk for ASD. Design, Setting, and Participants: This randomized clinical trial of 249 families of children aged 15 to 27 months who had positive screening results for possible ASD was conducted in 11 urban primary care sites in 3 cities. Data collection occurred from February 24, 2015, through November 5, 2018. Statistical analysis was performed on an intent-to-treat basis from November 5, 2018, to July 27, 2020. Interventions: Families were randomized to FN or conventional care management (CCM). Families receiving FN were assigned a navigator who conducted community-based outreach to families to address structural barriers to care and support engagement in recommended services. Families receiving CCM were assigned to a care manager, who did limited telephone outreach. Families received FN or CCM after positive initial screening results and for 100 days after diagnostic ascertainment. Main Outcomes and Measures: The primary outcome, diagnostic ascertainment, was measured as the number of days from randomization to completion of the child's clinical developmental evaluation, when a diagnosis of ASD or other developmental disorder was determined. Results: Among 250 families randomized, 249 were included in the primary analysis (174 boys [69.9%]; mean [SD] age, 22.0 [3.5] months; 205 [82.3%] publicly insured; 233 [93.6%] non-White). Children who received FN had a greater likelihood of reaching diagnostic ascertainment over the course of 1 year (FN, 108 of 126 [85.7%]; CCM, 94 of 123 [76.4%]; unadjusted hazard ratio [HR], 1.39 [95% CI, 1.05-1.84]). Site (Boston, New Haven, and Philadelphia) and ethnicity (Hispanic vs non-Hispanic) moderated the effect of FN (treatment × site interaction; P = .03; Boston: HR, 2.07 [95% CI, 1.31-3.26]; New Haven: HR, 1.91 [95% CI, 0.94-3.89]; and Philadelphia: HR, 0.91 [95% CI, 0.60-1.37]) (treatment × ethnicity interaction; P < .001; Hispanic families: HR, 2.81 [95% CI, 2.23-3.54] vs non-Hispanic families: HR, 1.49 [95% CI, 1.45-1.53]). The magnitude of FN's effect was significantly greater among Hispanic families than among non-Hispanic families (diagnostic ascertainment among Hispanic families: FN, 90.9% [30 of 33], and CCM, 53.3% [16 of 30]; vs non-Hispanic families: FN, 89.7% [35 of 39], and CCM, 77.5% [31 of 40]). Conclusions and Relevance: Family navigation improved the likelihood of diagnostic ascertainment among children from racial/ethnic minority, low-income families who were detected as at risk for ASD in primary care. Results suggest differential effects of FN by site and ethnicity. Trial Registration: ClinicalTrials.gov Identifier: NCT02359084.

Parenting Stress and its Associated Components Prior to an Autism Spectrum Disorder (ASD) Diagnostic Evaluation.

Parents of children with autism spectrum disorder (ASD) show increased levels of parenting stress, but only one study has examined this association before a diagnostic evaluation. We conducted a cross-sectional study of parenting stress in 317 low SES parents with children at-risk for ASD before a diagnostic evaluation. Multiple regression modeling evaluated the associations between parenting stress and parent and child factors. Parenting stress was negatively associated with social support and positively associated with active avoidance coping and parental worry. However, parenting stress was not associated with the child's ASD symptom severity or adaptive functioning, except for self-direction. Findings suggest parenting stress among parents of children at risk of ASD should be assessed prior to diagnosis.

Emergency Medical Responders and Adolescents With Autism Spectrum Disorder.

OBJECTIVES: Because of the high prevalence of Autism Spectrum Disorder (ASD) and wandering behavior, emergency medical responders (EMRs) will likely encounter children and adolescents with ASD. The objectives were to describe interactions between EMRs and children and adolescents with ASD, to evaluate EMRs' ability to recognize ASD in a simulated trauma setting, and to determine if EMRs' demographic characteristics affected their interactions with ASD youth. METHODS: A study of 75 videos of a simulated school bus crash was performed. The simulation included an adolescent with ASD portrayed by an actor. Videos were coded based on 5 domains: (1) reassurance attempts by the EMR, (2) quality of the EMR's interactions, (3) EMR's elicitation of information, (4) EMR's interactions with others, and (5) EMR's recognition of a disability. Two clinicians coded the videos independently, and consensus was reached for any areas of disagreement. RESULTS: Of 75 interactions, 27% provided reassurance to the adolescent with ASD, 1% elicited information, 11% asked bystanders for information or assistance, and 35% suggested a disability with 13% considering ASD. No differences across domains were found based on the EMR's sex. Emergency medical responders with greater than or equal to 5 years of experience were significantly more likely to elicit information than those with less than 5 years of experience, and paramedics had significantly higher total performance scores than paramedic students or those with EMT-Basic. CONCLUSIONS: Few EMRs in this study optimally interacted with adolescents with ASD or recognized a disability. These findings suggest a strong need for targeted educational interventions.

A mixed-methods process evaluation of Family Navigation implementation for autism spectrum disorder.

There is growing interest in Family Navigation as an approach to improving access to care for children with autism spectrum disorder, yet little data exist on the implementation of Family Navigation. The aim of this study was to identify potential failures in implementing Family Navigation for children with autism spectrum disorder, using a failure modes and effects analysis. This mixed-methods study was set within a randomized controlled trial testing the effectiveness of Family Navigation in reducing the time from screening to diagnosis and treatment for autism spectrum disorder across three states. Using standard failure modes and effects analysis methodology, experts in Family Navigation for autism spectrum disorder (n = 9) rated potential failures in implementation on a 10-point scale in three categories: likelihood of the failure occurring, likelihood of not detecting the failure, and severity of failure. Ratings were then used to create a risk priority number for each failure. The failure modes and effects analysis detected five areas for potential "high priority" failures in implementation: (1) setting up community-based services, (2) initial family meeting, (3) training, (4) fidelity monitoring, and (5) attending testing appointments. Reasons for failure included families not receptive, scheduling, and insufficient training time. The process with the highest risk profile was "setting up community-based services." Failure in "attending testing appointment" was rated as the most severe potential failure. A number of potential failures in Family Navigation implementation-along with strategies for mitigation-were identified. These data can guide those working to implement Family Navigation for children with autism spectrum disorder.

Helping a Child with Autism Spectrum Disorder Cope with Divorce.

CASE: Aaron is an 11-year-old boy with autism spectrum disorder (ASD), with cognitive and language skills in the above-average range, whose parents have recently separated. Aaron's mother initiated the separation when she learned that Aaron's father had maintained a relationship with a woman with whom he has a 10-year-old daughter. When Aaron's mother discovered this relationship, she demanded that Aaron's father leave their home.Aaron's father has moved in with his long-term girlfriend and keeps in contact with Aaron by calling once a day. Neither Aaron's father nor mother has discussed the reason for their separation with Aaron. So far, they have explained their separation by telling Aaron that they are "taking a break."Aaron's mother has been deeply hurt by Aaron's father's infidelity and does not want to reconcile with him. Aaron's father recognizes this but would like to continue to have a close relationship with his son. He would also like Aaron to get to know his half-sister.Aaron's mother seeks guidance regarding how to talk to Aaron about the separation and his father's second family. Given Aaron's diagnosis of ASD, she is particularly concerned about his ability to cope with this unexpected change in circumstances. What is your advice?

Overweight and obese status in children with autism spectrum disorder and disruptive behavior.

Overweight and obesity are common in pediatric populations. Children with autism spectrum disorder and disruptive behavior may be at higher risk. This study examined whether children with autism spectrum disorder and disruptive behavior are more likely to be overweight or obese than matched controls. Baseline data from medication-free children with autism spectrum disorder who participated in trials conducted by the Research Units on Pediatric Psychopharmacology Autism Network (N = 276) were compared to 544 control children from the National Health and Nutrition Examination Survey database matched on age, sex, race, parent education, and era of data collection. The mean age of the children with autism spectrum disorder was 7.9 ± 2.6 years; 84.4% were males. In the autism spectrum disorder group, the prevalence was 42.4% for overweight and 21.4% for obesity compared to 26.1% for overweight and 12.0% for obesity among controls (p < 0.001 for each contrast). Within the autism spectrum disorder sample, obesity was associated with minority status and lower daily living skills. These findings suggest that children with autism spectrum disorder and disruptive behavior are at increased risk for obesity and underscore the need for weight management interventions in this population.

Helping Children and Families Deal With Divorce and Separation.

For the past several years in the United States, there have been more than 800 000 divorces and parent separations annually, with over 1 million children affected. Children and their parents can experience emotional trauma before, during, and after a separation or divorce. Pediatricians can be aware of their patients' behavior and parental attitudes and behaviors that may indicate family dysfunction and that can indicate need for intervention. Age-appropriate explanation and counseling for the child and advice and guidance for the parents, as well as recommendation of reading material, may help reduce the potential negative effects of divorce. Often, referral to professionals with expertise in the social, emotional, and legal aspects of the separation and its aftermath may be helpful for these families.

Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure.

Children and adolescents affected by prenatal exposure to alcohol who have brain damage that is manifested in functional impairments of neurocognition, self-regulation, and adaptive functioning may most appropriately be diagnosed with neurobehavioral disorder associated with prenatal exposure. This Special Article outlines clinical implications and guidelines for pediatric medical home clinicians to identify, diagnose, and refer children regarding neurobehavioral disorder associated with prenatal exposure. Emphasis is given to reported or observable behaviors that can be identified as part of care in pediatric medical homes, differential diagnosis, and potential comorbidities. In addition, brief guidance is provided on the management of affected children in the pediatric medical home. Finally, suggestions are given for obtaining prenatal history of in utero exposure to alcohol for the pediatric patient.

Overweight and Obesity in a Sample of Children With Autism Spectrum Disorder.

OBJECTIVE: To determine the prevalence of overweight/obese status in children with autism spectrum disorders (ASD), identify associated characteristics, and develop a model to predict weight status. METHODS: The prevalence of overweight and obesity was determined in 2769 children with ASD enrolled in the Autism Speaks Autism Treatment Network, a collaboration of 17 academic centers, and compared with a national sample matched for age, sex, and race. Associations in the ASD sample between weight status and demographic and clinical variables, such as age, race, head circumference, and adaptive functioning, were tested using ordinal logistic regression. The accuracy of a final model that predicted weight status based on early life variables was evaluated in a validation sample. RESULTS: The prevalence of overweight and obesity were 33.9% and 18.2%, respectively; ASD was associated with a higher risk of obesity (but not overweight) relative to the national sample (odds ratio [OR], 1.16; 95% confidence interval [CI], 1.05-1.28; P = .003). In the adjusted analysis, overweight/obese status was significantly associated with Hispanic ethnicity (OR, 1.99; 95% CI, 1.37-2.89), parental high school education (OR, 1.56; 95% CI, 1.09-2.21), high birth weight (OR, 1.56; 95% CI, 1.11-2.18), macrocephaly (OR, 4.01; 95% CI, 2.96-5.43), and increased somatic symptoms (OR, 1.41; 95% CI, 1.01-1.95). A prediction model designed to have high sensitivity predicted low risk of overweight/obesity accurately, but had low positive predictive value. CONCLUSIONS: The prevalence of obesity in children with ASD was greater than a national sample. Independent associations with increased weight status included known risk factors and macrocephaly and increased level of somatic symptoms. A model based on early life variables accurately predicted low risk of overweight/obesity.

When the adoption becomes termination.

CASE: Steven is an 11-year-old boy who was adopted from an orphanage in Eastern Europe 8 years ago, when he was 3 years old along with his biological sister who is 1 year older. You have cared for him in your practice since that time seeing them annually for well child care. His mother reports that the first 2 years after adoption were very difficult, and Steven has never really bonded with her or her husband. Currently, he is reported to steal possessions of family members and instigate arguments with his older sister and act defiantly. The parents have put locks on their bedroom door due to fears of violence, primarily by Steven's older sister. Steven's mother reports that she and her husband no longer attempt to "parent" the children and provide minimal supervision to avoid conflict. In school, Steven is reported to have symptoms of inattention and hyperactivity that improved with treatment with stimulant medication and some learning challenges, but otherwise he is described as a lovely boy who has good relationships with his teachers.They present to urgent care clinic when mom stated "We have had enough." That day both children were caught taking $10 from the mother's wallet. On further discussion, it was discovered that they had done this several times over the last month to buy ice cream for neighborhood friends to "welcome them" to the neighborhood. Steven's mother presents today stating that the family has exhausted therapy services and are experiencing financial hardship secondary to investing time and money into behavioral and psychiatric services for Steven and his sister. They want to dissolve the adoption and have the children removed from their home. They seek guidance on how to do this. What would be your initial approach with the parents?