Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention.

Caregivers of children with autism spectrum disorder (ASD) may find it difficult to feel a sense of control and to cope with the overall physical and emotional demands of caring for their child. While caregivers are able to successfully cope with a high level of stress, there are limits to their resources and abilities to cope over time. Genetic counselors working with affected families may be able to help parents more effectively manage stress related to the disorder. Few short-term interventions have been reported in genetic counseling yet implementation of evidence-based examples may be achievable. This study aimed to assess the feasibility of a coping effectiveness training (CET) intervention designed to enhance coping self-efficacy (CSE) among caregivers of children with ASD, with the eventual goal of translating this intervention into genetic counseling practice. A randomized treatment-control design was used to investigate the feasibility of an intervention using CET among caregivers of children with ASD. The primary outcome was the feasibility of the intervention; the secondary outcome was improvements in CSE in the intervention group as compared to the control group. Caregivers were recruited and randomized into the treatment (n=15) or control (n=13) groups. Of these, 22 completed the study (retention: 78.6%). The intervention was highly feasible; most caregivers found the CET helpful, practical, useful, and relatively easy to attend. The treatment group demonstrated significantly increased CSE from pre-intervention to post-intervention (p=0.02). Between group differences were not significant when comparing the pre-post changes. We provide preliminary evidence that CET may be beneficial to caregivers of children with ASD. The results of this feasibility study support development of a phase II study of this intervention in a larger cohort, aimed to be implemented into a genetic counseling setting.

The Importance of Inclusion for Cardiovascular Health Promotion Programs in Delaware.

Individuals with disabilities experience greater rates of cardiovascular disease than individuals without disabilities. This increase can be attributed to decreased levels of physical activity, poor eating habits, and increased levels of diabetes, smoking, and obesity. Individuals with disabilities are often excluded from surveillance, treatment, and prevention efforts. Consequently, there is little known about their participation rates in health promotion and disease prevention programs. The aims of this investigation are (1) to examine time trends in cardiovascular disease and risk factors over a 10-year period by disability status and (2) to assess the inclusiveness of health promotion programs in Delaware. The percentage of individuals with disabilities increased from 18% in 2001 to 28% in 2011. Individuals with disabilities had higher rates of cardiovascular disease (t = 80.45; degrees of freedom [df] = 198; p < .0001) and obesity (body mass index > 30 kg/m2) than individuals without disabilities (t = 33.0; df = 198; p < .0001). They also reported less physical activity (t = 44.21; df = 198; p < .0001) and worse diet quality (t = 4.70; df = 198; p < .0001). There was a consistent lack of information about inclusion and participation of individuals with disabilities in health promotion programs. Making adaptations within cardiovascular disease prevention programs in Delaware is imperative to improving the health of individuals with disabilities. Ensuring cardiovascular disease programs are accessible and provide disability-specific trained staff will reduce barriers to participation so that all individuals can benefit.

Run-and-tumble kinematics of Enterobacter Sp. SM3.

The recent discovery of the peritrichous, swarm-competent bacterium Enterobacter sp. SM3 has offered a new opportunity to investigate the connection between bacterial swimming and swarming. Here, we report the run-and-tumble behavior of SM3 as planktonic swimming cells and as swarming cells diluted in liquid medium, drawing comparison between the two states. Swimming cells of SM3 run for an average of 0.77 s with a speed of approximately 30µm/s before tumbling. Tumbles last for a duration of 0.12 s on average and cause changes in direction averaging 69^{∘}. Swimming cells exposed to the common chemoattractant serine in bulk solution suppress the frequency of tumbles in the steady state, lengthening the average run duration and decreasing the average tumble angle. When exposed to aspartate, cells do not demonstrate a notable change in run-and-tumble parameters in the steady state. For swarming cells of SM3, the frequency of tumbles is reduced, with the average run duration being 50% longer on average than that of swimming cells in the same liquid medium. Additionally, the average tumble angle of swarming cells is smaller by 35%. These findings reveal that the newly identified species, SM3, performs run-and-tumble motility similar to other species of peritrichous bacteria such as E. coli, both in the swimming and swarming states. We present a simple mechanical model, which provides a physical understanding of the run-and-tumble behavior of peritrichous bacteria.

Psychiatric-related emergency department visits among children with an autism spectrum disorder.

OBJECTIVE: This study aimed to examine the prevalence and characteristics of psychiatry-related emergency department (ED) visits among children with an autism spectrum disorder (ASD), including the specific reason for visit, as well as the influence of insurance type. METHODS: Data used for this cross-sectional, observational study were obtained from the 2008 National Emergency Department Sample, the largest all-payer ED database in the United States. Psychiatry-related visits to the ED among children with ASD were identified using International Classification of Diseases, Ninth Revision, billing codes. A total of 3,974,332 visits (unweighted) were present for youth 3-17 years, of which 13,191 involved a child with ASD. RESULTS: Thirteen percent of visits among children with ASD were due to a psychiatric problem, as compared with 2% of all visits by youths without ASD. Results from the multivariate analyses revealed that the likelihood for a psychiatric ED visit was increased 9-fold (odds ratio [OR], 9.13; 95% confidence interval [CI], 8.61-9.70) among pediatric ASD visits, compared with non-ASD visits. Children with ASD who were covered by private insurance, compared with those with medical assistance, were at even greater risk for a psychiatric ED visit (OR, 1.58; 95% CI, 1.53-1.63). Visits among children with ASD were more likely to be due to externalizing (OR, 1.62; 95% CI, 1.44-1.83) and psychotic (OR, 1.93; 95% CI, 1.58-2.35) disorders compared with visits among non-ASD children. CONCLUSIONS: This study highlights the need for improving community-based psychiatric systems of care for youths with ASD to divert psychiatry-related ED visits, particularly for those children with private insurance.

Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware.

The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24 years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD.

Parental relationship status and age at autism spectrum disorder diagnosis of their child.

LAY ABSTRACT: Autism spectrum disorder (ASD) can be diagnosed as early as 18 months of age. However, the average age at diagnosis in the United States is over 2 years later. A lot has been written about the many barriers families face when seeking a diagnosis for their child. One area of research that has received no attention is whether separation between a child's biological parents affects the age at which a child is diagnosed with ASD. This study was conducted among 561 children who were receiving an ASD diagnosis for the first time. On average, these children were 5 years of age. The study took place in an urban, outpatient specialty autism clinic in the United States. Biological parents self-reported their relationship status during the evaluation. This was categorized as either "together" (married or living together but not married) or "not together" (separated, divorced, or never married). At the time of diagnosis, most children's biological parents were together (69%). We found children of parents who were together were diagnosed 1.4 years earlier than those who were not together. These findings have important implications for providing support to families that separate early in a child's life, with the goal of reducing the age at ASD evaluation among single parents and those who have been separated from their child's other biological parent. Providing support to these families is important since earlier age at diagnosis leads to earlier intervention, which can improve long-term outcomes for the child, family, and community as a whole.

Increasing Access to Empirically-Validated Interventions for Autism Spectrum Disorder:: Dissemination of PEERS into Community Health Settings.

OBJECTIVES: This research project aims to build capacity for social skills interventions for ASD for adolescents in community mental health settings in Delaware, using The Program for the Education and Enrichment of Relational Skills (PEERS), a social skills group program developed at UCLA. METHODS: Aim 1: A two-day education on PEERS was provided to community clinicians (n=15), and clinicians completed a survey assessing their perception of implementing a social skills group intervention for families at three time points. Aim 2: Five PEERS groups were held at three community mental health locations. Caregivers (n=14) completed rating scales assessing family quality of life, social skills, or parenting stress. RESULTS: Clinicians reported increased confidence in their ability to deliver social skills intervention following two-day education on PEERS. Furthermore, the clinicians who facilitated a PEERS group (n=9) reported a clinically significant increase in confidence. Fourteen families completed PEERS; no difference was reported regarding family quality of life, social skills, or parenting stress. CONCLUSIONS: This study shows the feasibility of expanding social skills interventions for children and families affected by ASD into community mental health settings, as 15 clinicians received additional education regarding social skills interventions and five more group opportunities using the PEERS program were made available in the community.

Health care experiences and perceived financial impact among families of children with an autism spectrum disorder.

OBJECTIVE: The authors compared the health care experiences of families raising a child with autism spectrum disorder (ASD), an intellectual disability disorder (IDD), or attention-deficit hyperactivity disorder (ADHD). METHODS: Children with a current diagnosis of ASD (N=3,005), ADHD (N=9,662), or IDD (N=949) were identified in the 2009-2010 National Survey of Children With Special Health Care Needs. Weighted structural equation modeling was used to determine the association between family satisfaction with medical care, timeliness of care, and medical insurance coverage and the impact of the child's condition on the family's financial situation. RESULTS: Families of children diagnosed as having ASD comorbid with either ADHD or IDD or comorbid with both conditions reported the highest levels of dissatisfaction across all health care quality variables and experienced the greatest impact on the family's financial situation. CONCLUSIONS: The findings underscore the need for comprehensive and accessible health care services for children with ASD, particularly those with comorbid conditions.

The Autism Impact Measure (AIM): initial development of a new tool for treatment outcome measurement.

The current study describes the development and psychometric properties of a new measure targeting sensitivity to change of core autism spectrum disorder (ASD) symptoms, the Autism Impact Measure (AIM). The AIM uses a 2-week recall period with items rated on two corresponding 5-point scales (frequency and impact). Psychometric properties were examined using a large sample (n = 440) of children with ASD enrolled in the Autism Treatment Network. The exploratory factor analysis indicated four factors and resulted in a 25-item questionnaire with excellent overall model fit. Test-retest reliability, cross-informant reliability, and convergent validity with other measures of ASD symptoms and overall functioning were strong. The AIM is a reliable and valid measure of frequency and impact of core ASD symptoms.

Anxiety, sensory over-responsivity, and gastrointestinal problems in children with autism spectrum disorders.

Children with autism spectrum disorders (ASD) experience high rates of anxiety, sensory processing problems, and gastrointestinal (GI) problems; however, the associations among these symptoms in children with ASD have not been previously examined. The current study examined bivariate and multivariate relations among anxiety, sensory over-responsivity, and chronic GI problems in a sample of 2,973 children with ASD enrolled in the Autism Treatment Network (ages 2-17 years, 81.6 % male). Twenty-four percent of the sample experienced at least one type of chronic GI problem (constipation, abdominal pain, bloating, diarrhea, and/or nausea lasting three or more months). Children with each type of GI problem had significantly higher rates of both anxiety and sensory over-responsivity. Sensory over-responsivity and anxiety were highly associated, and each provided unique contributions to the prediction of chronic GI problems in logistic regression analyses. The results indicate that anxiety, sensory over-responsivity and GI problems are possibly interrelated phenomenon for children with ASD, and may have common underlying mechanisms.

Relationship status among parents of children with autism spectrum disorders: a population-based study.

Despite speculation about an 80% divorce rate among parents of children with an Autism Spectrum Disorder (ASD), very little empirical and no epidemiological research has addressed the issue of separation and divorce among this population. Data for this study was taken from the 2007 National Survey of Children's Health, a population-based, cross-sectional survey. A total of 77,911 parent interviews were completed on children aged 3-17 years, of which 913 reported an ASD diagnosis. After controlling for relevant covariates, results from multivariate analyses revealed no evidence to suggest that children with ASD are at an increased risk for living in a household not comprised of their two biological or adoptive parents compared to children without ASD in the United States.

Determinants of appointment absenteeism at an outpatient pediatric autism clinic.

OBJECTIVE: Two widely discussed yet highly understudied factors that obstruct timely diagnosis and intervention among children with an autism spectrum disorder (ASD) are missed scheduled appointments and wait time for outpatient services. Research surrounding outpatient appointment no-show and cancellation rates as well as predictors of such would shed light on the barriers to community-based clinical care. METHODS: In this study, data from 8049 children and adolescents (mean = 6.97 years, SD = 4.81) with scheduled appointments at a multidisciplinary pediatric outpatient autism center were examined. A total of 43,504 appointments, scheduled between June 2003 and April 2012, were analyzed. Random and fixed effects multinomial logistic regression models were employed to explore the child-, clinician-, and appointment-related determinants of no-show and cancellation for initial and follow-up appointments. RESULTS: A no-show rate of 9% and 15%, and a cancellation rate of 11% and 10% was observed for initial (n = 8049) and follow-up (n = 35,455) appointments, respectively. Different predictors were found for both no-show and cancellation at the initial and follow-up appointments. In the multivariate analyses, the most consistent and robust predictors of no-show were African-American child race, medical assistance, provider type and appointment type, and evening appointments. For cancellation, these included increased wait time and provider type. Importantly, cancellation and no-show at the initial evaluation increased the risk for these same outcomes at follow-up. CONCLUSION: As ASD prevalence figures continue to increase in the United States, findings surrounding wait time, appointment absenteeism, and clinical models of care are important to improving public health.