Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism.

Background: 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. Methods: 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. Results: 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. Discussion: 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.

Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers' reported impact on their dependent's services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported "feeling stressed but able to deal with problems as they arise," and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

Brief Report: Impact of COVID-19 on Individuals with ASD and Their Caregivers: A Perspective from the SPARK Cohort.

The impact of the 2019 coronavirus pandemic (COVID-19) in the United States is unprecedented, with unknown implications for the autism community. We surveyed 3502 parents/caregivers of individuals with an autism spectrum disorder (ASD) enrolled in Simons Powering Autism Research for Knowledge (SPARK) and found that most individuals with ASD experienced significant, ongoing disruptions to therapies. While some services were adapted to telehealth format, most participants were not receiving such services at follow-up, and those who were reported minimal benefit. Children under age five had the most severely disrupted services and lowest reported benefit of telehealth adaptation. Caregivers also reported worsening ASD symptoms and moderate family distress. Strategies to support the ASD community should be immediately developed and implemented.

Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019.

LAY ABSTRACT: We currently assume that the global mean age at diagnosis of autism spectrum disorder ranges from 38 to 120 months. However, this range is based on studies from 1991 to 2012 and measures have since been introduced to reduce the age at autism spectrum disorder diagnosis. We performed a systematic review and meta-analysis (statistical analysis that combines the results of multiple scientific studies) for studies published between 2012 and 2019 to evaluate the current age at autism spectrum disorder diagnosis. We included 56 studies that reported the age at diagnosis for 40 countries (containing 120,540 individuals with autism spectrum disorder). Results showed the current mean age at diagnosis to be 60.48 months (range: 30.90-234.57 months) and 43.18 months (range: 30.90-74.70 months) for studies that only included children aged ⩽10 years. Numerous factors that may influence age at diagnosis (e.g. type of autism spectrum disorder diagnosis, additional diagnoses and gender) were reported by 46 studies, often with conflicting or inconclusive results. Our study is the first to determine the global average age at autism spectrum disorder diagnosis from a meta-analysis. Although progress is being made in the earlier detection of autism spectrum disorder, it requires our constant attention.

Novel Insights into Autism Knowledge and Stigmatizing Attitudes Toward Mental Illness in Dutch Youth and Family Center Physicians.

Professionals' limited knowledge on mental health and their stigmatizing attitudes toward mental illness can delay the diagnosis of autism. We evaluated the knowledge on Autism Spectrum Disorder (ASD) and stigmatizing attitudes in 93 physicians at Dutch Youth and Family Centers (YFC). These physicians screen for psychiatric symptoms in children. We show that their general ASD knowledge scored 7.1 (SD 1.2), but their specific ASD knowledge was only 5.7 (SD 1.7) (weighted means on 1-10 scale, 1 = least knowledge, 10 = most knowledge). Our physicians had positive attitudes toward mental illness (CAMI scores 2.18 (SD 0.33) to 2.22 (SD 0.40) on a 5-point Likert scale) but they had higher levels of stigmatizing attitudes than other Western healthcare professionals. Their levels were considerably lower than in non-Western professionals. We found no relations between ASD knowledge, stigmatizing attitudes and demographic variables. In conclusion, ASD knowledge and stigmatizing attitudes toward mental illness in Dutch YFC physicians require attention.

Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders.

The aim of this study was to understand the diagnostic, service and lived experiences of families affected by ASD in Southeast Europe. A total of 758 caregivers from Albania, Bulgaria, Croatia and Turkey were surveyed from 2013 to 2015 about characteristics of the child with ASD; service encounters; and caregiver perceptions. The average age at first concern was 24.4 months (SD 11.8) and at diagnosis, 40.0 months (SD 19.0). Psychiatrists were the most common diagnostician; most children received some ASD-related service, most frequently speech and language therapy. Caregivers endorsed challenges in access to care and perceived stigma. Despite country differences, findings relative to age at first concern, disparities in access and service utilization, and stigma speak to common regional needs.

Sex and gender differences in autism spectrum disorder: summarizing evidence gaps and identifying emerging areas of priority.

One of the most consistent findings in autism spectrum disorder (ASD) research is a higher rate of ASD diagnosis in males than females. Despite this, remarkably little research has focused on the reasons for this disparity. Better understanding of this sex difference could lead to major advancements in the prevention or treatment of ASD in both males and females. In October of 2014, Autism Speaks and the Autism Science Foundation co-organized a meeting that brought together almost 60 clinicians, researchers, parents, and self-identified autistic individuals. Discussion at the meeting is summarized here with recommendations on directions of future research endeavors.

A novel community-based buprenorphine program: client description and initial outcomes.

The aims of this retrospective, descriptive study were to describe clients served by a buprenorphine program in a community-based recovery center and to present initial treatment outcomes. A record review was conducted for clients treated from July 2010 to August 2011. Client demographic, health, substance use, and treatment history data were abstracted from the records of the first 78 clients served. Buprenorphine and opiate use data were collected via urine toxicology reports, collected weekly among clients who remained enrolled in treatment. The average percentages of weeks spent opiate free and buprenorphine compliant were 83% (SD = 26%) and 95% (SD = 13%), respectively. When positive heroin toxicology and negative buprenorphine toxicology were replaced for the missing/unknown data, the average percentages of opiate-abstinent weeks and buprenorphine compliance were 60% (SD = 34%) and 74% (SD = 28%), respectively. Roughly half of all clients (49%) were successfully transitioned to continue treatment with buprenorphine in a primary care setting. Findings from this study demonstrate that buprenorphine treatment for opiate dependence can be incorporated into a community-based recovery center with high rates of opiate abstinence and treatment adherence.

Approaches to enhancing the early detection of autism spectrum disorders: a systematic review of the literature.

BACKGROUND: A reliable diagnosis of autism can be made as early as 24 months, yet in many children diagnoses are made much later. A delay in diagnosis translates into a missed opportunity to provide early intervention services and to improve outcomes. The aim of the current study was to review the literature on early detection approaches in primary care and other community settings in the United States. METHODS: A search was conducted of the peer-reviewed and gray literature to identify studies published from January 1990 through January 2013 testing approaches to enhance the early detection of autism in community settings in the United States. RESULTS: The search identified 40 studies describing 35 approaches, which were grouped into the following categories: awareness (n = 4), routine screening (n = 21), and practice improvement to enhance screening (n = 10). Awareness approaches were associated with positive changes in knowledge of autism-related topics. Routine screening yielded high or increased rates of screening and referrals; however, few studies assessed the effect of screening on age at diagnosis or services enrollment. Practice improvement approaches resulted in increased screening and referral rates and highlighted the importance of adopting a multipronged approach to enhance early detection. CONCLUSIONS: Although studies that tested screening approaches in community settings found positive results, the effectiveness of such efforts on reducing time to diagnosis and services enrollment remains largely untested. The fact that few studies reported outcomes beyond rates of referral indicates the need for enhanced methodological rigor, particularly with respect to length of follow-up and quality of measures used.

Explaining differences in age at autism spectrum disorder diagnosis: a critical review.

The diagnosis of autism is often delayed, which translates into a missed opportunity to provide treatment during a critical developmental period. This study reviews studies that assessed factors associated with age at autism spectrum disorder diagnosis and provides recommendations on future research, programs, and policies to improve early detection. A search for all peer-reviewed articles containing the words autism, age, and diagnosis in either the title or abstract was performed. A total of 42 studies published from January 1990 through March 2012 were identified. Mean age at diagnosis for all autism spectrum disorders ranged from 38 to 120 months and has decreased over time. Factors associated with earlier diagnosis included greater symptom severity, high socioeconomic status, and greater parental concern about initial symptoms. Family interactions with the health and education systems prior to diagnosis also influenced age at diagnosis. Geographic variation in age at autism spectrum disorder diagnosis was identified in a number of studies, suggesting that community resources and state policies play a role in early identification. Early detection efforts should include enhanced parental and provider education on the early recognition of developmental problems, interventions aimed at streamlining the process from first concern to eventual diagnosis, and strategies that target underserved populations.

Children's compliance with American Academy of Pediatrics' well-child care visit guidelines and the early detection of autism.

This study estimated compliance with American Academy of Pediatrics (AAP) guidelines for well-child care and the association between compliance and age at diagnosis in a national sample of Medicaid-enrolled children with autism (N = 1,475). Mixed effects linear regression was used to assess the relationship between compliance and age at diagnosis. Mean age at diagnosis was 37.4 (SD 8.4) months, and mean compliance was 55 % (SD 33 %). Children whose care was compliant with AAP guidelines were diagnosed 1.6 months earlier than children who received no well-child care. Findings support that the timely receipt of well-child care may contribute to earlier detection. Additional research on the contribution of compliance, well-child visit components and provider characteristics on the timely diagnosis of autism is needed.

Correlates of schizophrenia spectrum disorders in children and adolescents cared for in community settings.

BACKGROUND: This study examined the prevalence and correlates of schizophrenia spectrum disorders (SSD) among a national sample of 9006 children. METHODS: Clinician-assigned diagnoses were used to divide the sample into two groups: children with SSD and children with other Axis I disorders. RESULTS: Three percent of the sample had a SSD diagnosis. African American (OR=1.71, 95% CI: 1.11, 2.65) and Hispanic race/ethnicity (OR=1.96, 95% CI: 1.31, 2.94), a greater number of comorbid psychiatric diagnoses (three diagnoses, OR=2.22, 95% CI: 1.49, 3.31), a history of attempting suicide (OR=1.45; 95% CI: 1.05, 2.02), and past residential treatment (OR=1.59; 95% CI: 1.11, 2.28) were all associated with increased odds of SSD diagnosis. CONCLUSIONS: Although schizophrenia spectrum disorders in youth are rare, children with these disorders present with a distinct risk profile that may inform service planning and delivery and assist in identifying individuals early in the course of their illness.

Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry.

Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's database via a medical record review on a sample of IAN Research participants. Sixty-one percent of families agreed to participate; 98% (n = 116) of whom provided documentation verifying a professionally diagnosed ASD. Results of this study suggest that information collected from parents participating in IAN Research is valid, participants can be authenticated, and that scientists can both confidently use IAN data and recruit participants for autism research.

Stability of initial autism spectrum disorder diagnoses in community settings.

The study's objectives were to assess diagnostic stability of initial autism spectrum disorder (ASD) diagnoses in community settings and identify factors associated with diagnostic instability using data from a national Web-based autism registry. A Cox proportional hazards model was used to assess the relative risk of change in initial ASD diagnosis as a function of demographic characteristics, diagnostic subtype, environmental factors and natural history. Autistic disorder was the most stable initial diagnosis; pervasive developmental disorder-not otherwise specified was the least stable. Additional factors such as diagnosing clinician, region, when in time a child was initially diagnosed, and history of autistic regression also were significantly associated with diagnostic stability in community settings. Findings suggest that the present classification system and other secular factors may be contributing to increasing instability of community-assigned labels of ASD.

Behavioral and Emotional Strengths among Youth in Systems-of-Care and the Effect of Race/Ethnicity.

Behavioral and emotional strengths are important to consider when understanding youth mental health and treatment. This study examined the association between youth strengths and functional impairment, and whether this association is modified by race/ethnicity. Multinomial logistic regression models were used to estimate the effects of strengths on impairment, and examine whether race and ethnicity modified this relationship in 8,129 Caucasian, African American, Hispanic, and American Indian/Alaska Native youth, between 5 and 18 years of age. Results suggest that youth with average and above average strengths were less likely to have impairment compared to youth with below average strengths. Race and ethnicity modified this relationship in both expected and unexpected ways. Among youth with average and above average strengths, racial and ethnic minority youth appear to have more impairment than Caucasian youth. However, among youth with below average strengths, racial and ethnic minority youth have less impairment than Caucasian youth. Findings highlight the importance of incorporating strengths-based approaches in youth mental health treatment and the need for further research to understand the specific nature of strengths as it effects impairment across racial/ethnic groups. Implications and recommendations are discussed.

Trends in autism spectrum disorder diagnoses: 1994-2007.

We analyzed predictors of parent-reported initial diagnosis (autistic disorder [AD], pervasive developmental disorder-not otherwise specified [PDD-NOS], pervasive developmental disorder ['PDD'] and autism spectrum disorder ['ASD'], and Asperger syndrome [AS]), among 6,176 individuals with autism spectrum disorders diagnosed from 1994 through 2007. Overall, distribution of diagnoses was influenced by a secular time trend factor; other significant factors included ethnicity, white race, geographic location, urbanicity, and initial evaluator. Since 2001, most initial diagnoses of AD and AS have remained steady while 'PDD' and PDD-NOS have decreased. 'ASD' diagnoses have increased, especially among school-based teams; AS diagnoses also increased uniquely among these evaluators. Findings from this study suggest that current diagnostic guidelines may not be meeting all community evaluator needs.