"Getting Autism": Educators, Parents, and Autistic Adults and Teens Reflect on the Importance of Teachers Who Understand.

PURPOSE: To explore the perspectives of educators, parents, and individuals on the autism spectrum regarding the qualities of teachers best equipped to support autistic students. METHODS: In qualitative interviews parents of autistic adults (n = 35) discussed experiences they and their child faced during the school years, as did young autistic adults (n = 12) and teens (n = 11). Nineteen educators were also interviewed regarding how autistic students and their teachers were faring in public schools as well as what qualities and skills teachers needed to best support these students. RESULTS: A critical emergent theme was the importance of educators who possess a deep, intuitive understanding of autistic individuals. "Getting autism" involved autism knowledge, obtained through training or experience; an intuitive ability to read, respond to, and appreciate autistic students; and flexibility adapting to these students' needs. Autistic students, parents, and educators alike experienced a stigmatizing judgement and lack of support from unenlightened individuals in the schools. In contrast, there was great appreciation for those who "got autism" and were able to ease the way of autistic students, or support autism-friendly teachers, in whatever grade or situation. CONCLUSION: Research investigating how to cultivate, support, and reward autism-affirming teachers is needed. This will likely involve both didactic and experiential autism-focused training as well as recognition of the importance of high emotional intelligence and other qualities of teachers who "get autism." Future research should also explore the effects on these teachers and their students of larger systems, policies, and practices.

Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study.

To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions, transition concerns, and the re-consenting process. Questions regarding guardianship were difficult for parents unsure of a teen's future status. Mothers were key facilitators of re-consenting for soon-to-be-independent teens. As legal adulthood approached, parents were willing to assist teens with re-consenting but needed support, asking for multiple contacts, transition resources, and explanatory materials from the research team. Most teens were not cognizant of SPARK but willing to continue participation once made aware.

Presumed adrenal insufficiency in neonates treated with corticosteroids for the prevention of bronchopulmonary dysplasia.

OBJECTIVE: To determine if extremely preterm (EPT) neonates receiving dexamethasone for the prevention of BPD have a higher incidence of presumed adrenal insufficiency (PAI). STUDY DESIGN: Retrospective cohort study of neonates <28 weeks gestation examining PAI after dexamethasone use and PAI after intratracheal budesonide with surfactant administration. RESULT: Of 332 neonates, 38% received dexamethasone. The incidence of PAI was higher in neonates who had received dexamethasone (20.8% vs 2.9%, p < 0.001). However, for intubated babies receiving surfactant, dexamethasone was not independently associated with increased PAI after adjusting for gestational age, birthweight, and race (aOR 2.92, 95% CI: 0.79-10.85). Dexamethasone was independently associated with increased PAI in infants previously receiving budesonide/surfactant treatment (aOR 5.38, 95% CI: 1.38-20.90). CONCLUSION: The use of dexamethasone alone was not associated with increased PAI, when adjusted for prematurity-related factors. The combination of budesonide with dexamethasone was significantly associated with increased PAI.

Budesonide mixed with surfactant did not affect neurodevelopmental outcomes at 6 or 18 months corrected age in observational cohorts.

BACKGROUND: The addition of budesonide to surfactant in very-low-birth-weight infants with less severe RDS decreased bronchopulmonary dysplasia (BPD) severity. Long-term neurodevelopmental follow-up was needed to monitor for systemic effects of budesonide. METHODS: Infants ≤1250 g who received intratracheal budesonide (0.25 mg/kg) with surfactant (n = 173) were compared to a historical cohort who received surfactant alone (n = 294). Peabody Developmental Motor Scales II at 4-6 months corrected age and Bayley Scales of Infant & Toddler Development III at 18-22 months corrected age were compared. RESULTS: There were no differences in muscle tone or motor skills by Peabody exam. There were no differences in the cognitive, language, or motor domains between cohorts on Bayley III. CONCLUSIONS: In a cohort of infants treated with budesonide mixed with surfactant, there were no differences in developmental outcomes at 4-6 months or 18-22 months corrected age.

Young Adults on the Autism Spectrum and Early Employment-Related Experiences: Aspirations and Obstacles.

In the United States, employment outcomes for young adults with an autism spectrum disorder (ASD) are poor, with many unemployed, underemployed, or otherwise unable to achieve their potential regardless of cognitive ability. To explore employment expectations and experiences, qualitative interviews were conducted with 12 young adults with ASD and 28 parents. Transcripts were analyzed using the constant comparative method associated with a grounded theory approach. Three major themes emerged: Employment Aspirations and Potential, Challenges of Job Finding and Keeping, and Differing Parent and Young Adult Work-Related Roles and Views. Issues discussed include the need to foster meaningful pre-employment opportunities, acknowledge the role of families in employment issues, provide ASD-focused workplace support, and effectively coordinate intersecting systems (e.g., schools, agencies, employers).

Interhospital Transport of Infants on Bubble Continuous Positive Airway Pressure via Ground and Air.

OBJECTIVE: The purpose of this study was to evaluate the use of a respiratory protocol for the interhospital transport of infants with respiratory distress on bubble continuous positive airway pressure (bCPAP) and provide information on the safety of bCPAP during transport via ground and helicopter. METHODS: We evaluated a retrospective cohort study of neonates (gestational age 22-41 weeks) transported to our level 4 neonatal intensive care unit (NICU) before (n = 529) and after implementing (n = 540) protocols for increasing bCPAP and intubation criteria. Infants were evaluated for intubation before transport, the safety of transport, and the need for intubation shortly after arrival in the NICU. RESULTS: After initiating the protocols, less infants received mechanical ventilation, and more infants received bCPAP for transport via ground and helicopter. Upon arrival to the NICU, infants using the protocols had lower fraction of inspired oxygen and higher continuous positive airway pressures, and similar numbers required intubations in the first 12 hours. There were no differences in the rate of pneumothoraces. CONCLUSIONS: bCPAP can be used on both ground and helicopter transport of very small infants. Respiratory protocols decreased mechanical ventilation during transport without increasing the need for intubation within 12 hours of arrival.

Surfactant and budesonide for respiratory distress syndrome: an observational study.

BACKGROUND: In preterm infants on moderately high ventilator support, the addition of budesonide to surfactant lowered bronchopulmonary dysplasia (BPD) rates by 20% without increased morbidity or mortality. The aim of this cohort comparison was to determine the safety and efficacy of the combination in infants with milder respiratory distress syndrome (RDS). METHODS: In August 2016 we began administering budesonide (0.25 mg/kg) mixed with surfactant (Survanta 4 mL/kg) to all infants ≤ 1250 g who failed CPAP and required intubation. Infants were compared to a historical cohort (2013-2016) who received surfactant alone. RESULTS: BPD or death did not change between the historical surfactant cohort (71%, n = 294) and the budesonide cohort (69%, n = 173). Budesonide was associated with a decrease in the need for continued mechanical ventilation, severe BPD type II or death (19-12%), grade III BPD or death (31-21%), and the median gestational age at discharge was 1 week earlier. Histologic chorioamnionitis was associated with decreased budesonide effects. Secondary morbidities (NEC, IVH, ROP, Sepsis) were similar. CONCLUSION: Overall BPD rates remained unchanged with the addition of budesonide. Budesonide was associated with decreased severity of BPD, decreased mechanical ventilation use, earlier discharge, and similar short-term outcomes.

Bronchopulmonary Dysplasia: When the Very Preterm Baby Comes Home.

Many infants with severe bronchopulmonary dysplasia (BPD) can be safely managed with oxygen at home. This review covers criteria for home oxygen therapy, monitoring, and weaning protocols for oxygen therapy in the outpatient setting. Although most infants with BPD are weaned from oxygen within a year, they continue to have pulmonary function abnormalities into adolescence. These infants also require evaluation for pulmonary hypertension, systemic hypertension, and a strong focus on adequate nutritional needs for growth.

It's a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder.

We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their "greatest challenges and joys" as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents' stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents' coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents' wisdom included patience and insight. Recommendations to support these caregivers are provided.

Young Adults on the Autism Spectrum: The Struggle for Appropriate Services.

In the United States, young adults with an autism spectrum disorder (ASD) lose federally mandated supports upon leaving high school. To arrange adult services, families must prove their young adult's eligibility and find competent service providers. National-level statistics regarding receipt of appropriate adult services are discouraging, but little is known about families' lived experience with regard to services. Therefore, qualitative interviews focused on the search for and satisfaction with adult services were conducted with parents of young adults with ASD, then analyzed using the constant comparative method. Emergent themes included Bureaucracy and Fighting for Access, Staffing Issues, Program Suitability, and "Doing It Yourself." The need to improve service access and delivery is discussed, as are issues facing specific ASD subgroups.

Barriers to Receipt of Services for Young Adults With Autism.

OBJECTIVES: In this study, we examine experiences of families of young adults (YAs) on the autism spectrum to better understand dynamics leading to poor YA outcomes. METHODS: Twenty parents of YAs with autism spectrum disorder (ASD) who had completed high school in the past 15 years took part in a 90-minute interview. They described their YA's experiences at the transition from high school and current status with regards to services or postsecondary education. Qualitative interviews were digitally recorded, transcribed, and analyzed by using the constant comparative method associated with a grounded theory approach. RESULTS: Few adults with ASD were receiving autism-specific assistance no matter their level of cognitive functioning. Existing systems, such as service agencies and college disability support offices, had seldom been designed to meet their needs. Some families gave up on services, some used self-directed services they had to manage themselves, and others paid out of pocket for services they could access no other way. Inadequate services often led to YA failure and worsening of symptoms. The majority of families bore the financial and emotional brunt of finding or creating services and community experiences to meet their adult child's needs. CONCLUSIONS: Parent narratives highlight the difficulties that are faced as families attempt to access appropriate services for YAs on the autism spectrum at all levels of functioning. These insights can help pediatricians understand family concerns and develop anticipatory guidance strategies. More research is needed to identify potential solutions to challenges faced by specific subgroups of YAs with ASD.

Young Adults on the Autism Spectrum at College: Successes and Stumbling Blocks.

There is limited information on outcomes for young adults with autism spectrum disorder (ASD), including achievement at college. Qualitative interviews were conducted with 18 families reporting a degree-seeking college experience for their young adult with ASD. Interview transcripts were analyzed using a grounded theory approach. Four themes surrounding success and failure at college emerged. Preparation Beyond Academics involved challenges associated with ASD, such as social, executive functioning, and mental health issues, and to what extent these had been addressed prior to leaving high school. Student/College Fit related to whether a student's capabilities were matched to college location, size, and culture, while Campus Supports and Family Supports concerned assistance provided by colleges and families, respectively. Implications for future practice are discussed.

Grandparents' Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs.

Limited information is available regarding the first person perspective of grandparents of children with Autism Spectrum Disorders (ASD). In the present study, 1870 grandparents of a child with ASD participated in a nationwide, online, anonymous, 30-minute survey and responded to open-ended questions including their "greatest challenges and greatest joys" as the grandparent of a child on the autism spectrum. A grounded theory approach to qualitative analysis revealed four overarching categories: a Desire for Connection, Barriers to Care, Celebration of Progress, and Personal Reactions. Despite the presence of significant challenges grandparents often experienced positivity in their role, and engaged in radical acceptance of their grandchild as well as transformative insight and advocacy. Specific recommendations are offered to help address grandparents' needs and capitalize upon their resilience.

Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data.

Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders' priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18-71 years (M = 38.5 years, standard deviation = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18-58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample's significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families.

Risk factors for bullying among children with autism spectrum disorders.

Although children with disabilities have been found to be at an increased risk of bullying, there are limited studies investigating predictors of bullying involvement in children with autism spectrum disorders. The current study presents findings from 1221 parents of children diagnosed with autism spectrum disorder who were selected from a national web-based registry. Parents completed a survey dedicated to the school and bullying experiences of their child, and multivariate logistic regression analyses were conducted to identify child and school risk factors for involvement as victim, bully, or bully-victim. Additional analyses examined the risk of bullying involvement based on the amount of time spent in general education classrooms. Children diagnosed with Asperger's disorder, attending a public school or a school with a general education population, were at the greatest risk of being victimized in the past month. Children with comorbid conditions and a high level of autistic traits were the most likely to be victims, bullies, and bully-victims. Finally, children in full inclusion classrooms were more likely to be victimized than those who spend the majority of their time in special education settings. Future research studies should be invested in finding appropriate supports for children with autism spectrum disorder placed in inclusive settings.

The association between bullying and the psychological functioning of children with autism spectrum disorders.

OBJECTIVE: Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs). METHODS: A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child's psychological well-being and any psychiatric comorbidity. Multivariate logistic regressions were performed to determine whether specific psychiatric comorbidities were associated with an increased risk of involvement as victim, bully, or bully-victim. Analyses of variance determined the relationship between bullying frequency and psychological functioning. All models adjusted for child and school covariates. RESULTS: Children who were frequently victimized were more likely to present with internalizing symptoms, whereas children who frequently bullied others were more likely to exhibit emotion regulation problems. Children who were identified as frequent bully-victims presented with both internalizing symptoms and emotion regulation problems. Children with attention-deficit hyperactivity disorder (ADHD) and depression were more likely to have been victimized, whereas children with conduct disorder (CD) or oppositional defiant disorder (ODD) were more likely to have bullied other children. Children identified as bully-victims were more likely to have ADHD, CD, or ODD. CONCLUSIONS: Children with ASDs who had displayed bullying behaviors in the past month exhibited psychological impairments, including psychiatric comorbidity. The frequency of bullying behaviors was significantly associated with the level of impairment.

The association between child autism symptomatology, maternal quality of life, and risk for depression.

Parents raising children with autism spectrum disorders (ASDs) have been shown to experience high levels of stress and report a lower quality of life. The current study examined the association between child autism symptomatology, mother's quality of life, and mother's risk for depression in a sample of 1,110 mothers recruited from a web-based registry of families with children with an ASD. Higher autism symptomatology and a greater number of co-occurring psychiatric disorders in the child were associated with an increased risk for current treatment of maternal depression and a lower maternal quality of life. The results highlight the importance of screening for depression, particularly in mothers of children with ASD and mental health and behavioral challenges.

Occurrence and family impact of elopement in children with autism spectrum disorders.

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs. METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model. RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD. CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.

Mood disorders in mothers of children on the autism spectrum are associated with higher functioning autism.

Mood disorders occur more frequently in family members of individuals with autism spectrum disorders (ASD) than in the general population. There may be associations between maternal mood disorder history patterns and specific ASD phenotypes. We therefore examined the relationship between maternal mood disorders and child autism spectrum disorders in 998 mother-child dyads enrolled in a national online autism registry and database. Mothers of children with ASD completed online questionnaires addressing their child's ASD as well as their own mood disorder history. In multivariate logistic regression models of ASD diagnoses, the odds of an Asperger disorder versus autistic disorder diagnosis were higher among those children whose mothers had a lifetime history of bipolar disorder (OR 2.11, CI 1.20, 3.69) or depression (OR 1.62, CI 1.19, 2.19). Further, maternal mood disorder onset before first pregnancy was associated with higher odds (OR 2.35, CI 1.48, 3.73) of an Asperger versus autism diagnosis among this sample of children with ASD. These data suggest that differences in maternal mood disorder history may be associated with ASD phenotype in offspring.