Parents of children with autism spectrum disorder (ASD) may be at greater risk for developing antivaccine beliefs that lead to vaccine delays and/or refusals for their children. We investigated ...current parental vaccine hesitancy, parents’ beliefs about causes of children’s developmental delays, and children’s vaccination histories among parents of children with ASD or non-ASD developmental delays. Data were analyzed from 89/511 parents (17.4%) who completed the Parent Attitudes About Childhood Vaccines questionnaire and the Revised Illness Perception Questionnaire; 46.1% had childhood vaccination records available. Overall, 21/89 (23.6%, 95% confidence interval CI: 15.0-34.0) of parents were vaccine hesitant (ASD n = 19/21 90.5%, non-ASD n = 2/21 9.5%). Parents of children with ASD were significantly more likely to agree with “toxins in vaccines” as a cause of their child’s developmental delays (28.4% vs 5.0%, P = .034). The odds of being vaccine hesitant were 11.9 times (95% CI 2.9-48.0) greater among parents who agreed versus disagreed that toxins in vaccines caused their children’s developmental delays. Rates of prior vaccine receipt did not differ between hesitant and nonhesitant groups.
•Evaluated two versions of parent-led CBT for anxiety in autistic youth.•Compared low with standard therapist contact.•No differences were found in primary or secondary outcomes.•69% of completers ...were responders at posttreatment.•Low-contact CBT saved an average of $1,222.64 per family.
Parent-led cognitive behavioral therapy (CBT) is an efficient, promising form of therapy that may be well suited for autistic youth with anxiety disorders, though to date it has been minimally tested. In this study, 87 autistic youth (7 to 13 years old) with anxiety disorders and their parents were randomized to two forms of parent-led CBT in which parents led their child through a guided CBT workbook across 12 weeks: one with low therapist contact (four 30-minute telehealth calls), and one with standard therapist contact (ten 60-minute telehealth calls). Anxiety, functional impairment, and autism features significantly declined across therapy, without differences between groups. High satisfaction was reported in both groups, though significantly higher satisfaction ratings were reported in standard-contact CBT. Responder rates were 69% of completers at posttreatment (70% in standard contact, 68% in low contact) and 86% at 3-month follow-up (86% in standard contact, 87% in low contact). Low-contact CBT was estimated to incur an average cost of $755.70 per family compared with $1,978.34 in standard-contact CBT. Parent-led CBT with minimal or standard therapist contact both appear to be effective CBT delivery formats for autistic youth with anxiety disorders, with significant cost savings for low-contact CBT.
SPARK launched in 2016 to build a US cohort of autistic individuals and their family members. Enrollment includes online consent to share data and optional consent to provide saliva for genomic ...analysis. SPARK's recruitment strategies include social media and support of a nation-wide network of clinical sites. This study evaluates SPARK's recruitment strategies to enroll a core study population.
Individuals who joined between January 31, 2018, and May 29, 2019 were included in the analysis. Data include sociodemographic characteristics, clinical site referral, the website URL used to join, how the participant heard about SPARK, enrollment completion (online registration, study consents, and returning saliva sample), and completion of the baseline questionnaire. Logistic regressions were performed to evaluate the odds of core participant status (completing enrollment and baseline questionnaire) by recruitment strategy.
In total, 31,715 individuals joined during the study period, including 40% through a clinical site. Overall, 88% completed online registration, 46% returned saliva, and 38% were core participants. Those referred by a clinical site were almost twice as likely to be core participants. Those who directly visited the SPARK website or performed a Google search were more likely to be core participants than those who joined through social media.
Being a core participant may be associated with the "personal" connection and support provided by a clinical site and/or site staff, as well as greater motivation to seek research opportunities. Findings from this study underscore the value of adopting a multimodal recruitment approach that combines social media and a physical presence.
The purpose of this special issue is to bring attention to health-related issues in youth with autism spectrum disorder (ASD), with the intent to support pediatric medical and behavioral-health ...providers in caring for patients with ASD. Specific topics discussed include medical conditions observed in individuals with ASD and associated genetic mutations, vaccine hesitancy and beliefs about causes of ASD, expanding ASD-diagnostic supports to community providers, differential diagnosis of ASD, interventions for co-occurring anxiety in ASD, and suicide risk among individuals with ASD. This introductory article provides a brief overview of each paper, including the clinical relevance of each topic.
The broad autism phenotype (BAP) refers to the phenotypic expression of an underlying genetic liability to autism, manifest in non-autistic relatives. This study examined the relationship among the
...Broad Autism Phenotype Questionnaire
(BAPQ),
Social Responsiveness Scale: Adult Research Version
(SRS:ARV), and
Family History Interview
(FHI) in a large, multi-site study of 1,650 simplex families (Simons Simplex Collection). Correlations between the BAPQ and SRS:ARV Total scores were moderate, and correlations between FHI ratings and SRS:ARV and BAPQ were significant but weak. Overall, the results suggested that BAP traits occur at low rates in simplex families, and rates vary significantly depending upon the measure utilized. Implications include the need for multiple informants, and the assessment of distinct BAP traits in large-scale genetic studies of individuals with ASD.
Parents of children with pervasive developmental disorders (n = 494) were surveyed to determine their level of satisfaction with the process of getting an autism spectrum diagnosis. Participants in ...this web-based study (mean age = 37.8 years) came from five countries and reported on children with an average age of 8.3 years (range = 1.7 to 22.1). All children had a diagnosis of either autism (59.9%), Asperger syndrome (23.5%), or PDD-NOS (16.6%). Higher levels of parental education and income were associated with earlier diagnosis and greater satisfaction with the diagnostic process. Parents were more satisfied with the diagnostic process when they saw fewer professionals to get the diagnosis and when the children received the diagnoses at younger ages.
Musings on the puzzle piece Goin-Kochel, Robin P
Autism : the international journal of research and practice,
02/2016, Volume:
20, Issue:
2
Journal Article
Peer reviewed
Following is a brief musing on Roy Grinker’s discussion of what the puzzle piece symbolizes for autism during his presentation at the 2015 International Meeting for Autism Research. In his words, ...“The puzzle piece is ubiquitous.” It likely holds a different meaning for each of us, and this is how one autism researcher sees it.
Self-injurious behaviors (SIB) are problematic for many children with autism spectrum disorders (ASD). Existing models to explain factors contributing to SIB fail to account for a large proportion of ...variance in SIB. This study attempted to explain a greater proportion of variance in SIB by addressing methodological/theoretical limitations in previous research using a sample of 2341 youth with ASD. The model comprised of predictors identified by the prior study continued to explain only a small proportion of variance in the SIB score (
R
2
= .13). Revisions to the model failed to substantially improve model fit. Results suggest that psychological, cognitive, and behavioral factors alone do not adequately explain common measures of SIB and highlight the need for further research.
The 16p11.2 duplication (BP4–BP5) is associated with Autism Spectrum Disorder (ASD), although significant heterogeneity exists. Quantitative ASD, behavioral and neuropsychological measures and DSM-IV ...diagnoses in child and adult carriers were compared with familial non-carrier controls, and to published results from deletion carriers. The 16p11.2 duplication phenotype ranges widely from asymptomatic presentation to significant disability. The most common diagnoses were intellectual disability, motor delays and Attention Deficit Hyperactivity Disorder in children, and anxiety in adults. ASD occurred in nearly 20 % of child cases, but a majority of carriers did not show the unique social features of ASD. The 16p11.2 duplication phenotype is characterized by wider variability than the reciprocal deletion, likely reflecting contributions from additional risk factors.
PDF
