Jessica Kiely Law

Jessica Kiely Law
Kennedy Krieger Institute | KKI · Department of Medical Informatics

MD, MPH

About

73
Publications
12,785
Reads
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2,332
Citations
Additional affiliations
February 2006 - present
Kennedy Krieger Institute
Position
  • Research Director, Interactive Autism Network
February 2006 - present
Johns Hopkins Medicine
Position
  • Research Associate

Publications

Publications (73)
Article
Full-text available
To better understand the impact of children’s autism spectrum disorder (ASD) severity on families, we evaluated pathways through which ASD severity affected child sleep quality, caregiver strain, and caregiver sleep quality. In a cross-sectional analysis through the U.S.-wide Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort....
Article
Risperidone and aripiprazole, commonly used antipsychotics in children with autism spectrum disorder (ASD), have previously been associated with elevated fracture risk in other populations. The aim of this study was to evaluate and compare the risk of fracture among children with ASD using risperidone or aripiprazole. This was a retrospective, prop...
Article
We estimated the effects of information avoidance and information seeking among parents of children diagnosed with autism spectrum disorder (ASD) on age of diagnosis. An online survey was completed by 1,815 parents of children with ASD. Children of parents who self-reported that they had preferred “not to know,” reported diagnoses around 3 months l...
Article
Full-text available
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...
Article
Full-text available
Background The objective of this study is to gain new insights into the relationship between clinical signs and age at diagnosis. Method We utilize a new, large, online survey of 1743 parents of children diagnosed with ASD, and use multiple statistical approaches. These include regression analysis, factor analysis, and machine learning (regression...
Article
Full-text available
The COVID‐19 pandemic has disrupted lives around the world. Autistic adults are at higher risk for co‐occurring medical and psychiatric conditions and may be more prone to difficulties adapting to pandemic‐related changes and social distancing mandates and coping with ongoing uncertainties. On the other hand, the pandemic may lead to greater unders...
Article
Background Although screening for sleep problems in children with ASD is recommended, primary care providers generally ask parents a single, high-level screening question about their child’s sleep. Can this capture whether a child has severe sleep problems? Method Parents of children with ASD ages 3–17 years recruited from a validated and verified...
Article
Full-text available
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 experie...
Preprint
Full-text available
Background: The objective of this study is to gain new insights into the relationship between clinical signs and age at diagnosis. Method: We utilize a new, large, online survey of parents of children diagnosed with ASD, and use multiple statistical approaches. Results: We find that clinical signs that most strongly predict early diagnosis are not...
Preprint
Full-text available
Background: The objective of this study is to gain new insights into the relationship between clinical signs and age at diagnosis. Method: We utilize a new, large, online survey of 1743 parents of children diagnosed with ASD, and use multiple statistical approaches. These include regression analysis, factor analysis, and machine learning (regressio...
Article
Full-text available
The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions...
Article
Objectives: To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps. Methods: A c...
Article
Full-text available
The article Psychometric Validation of the Autism Impact Measure (AIM), written by Richard Houghton, Brigitta Monz, Kiely Law, Georg Loss, Stephanie Le Scouiller, Frank de Vries and Tom Willgoss was originally published electronically on the publisher’s internet portal (currently SpringerLink) on 09 April 2019 without open access.With the author(s)...
Article
Full-text available
The Autism impact measure (AIM) is a caregiver-reported questionnaire assessing autism symptom frequency and impact in children, previously shown to have good test–retest reliability, convergent validity and structural validity. This study extended previous work by exploring the AIM’s ability to discriminate between ‘known-groups’ of children, and...
Data
Appendix S1: Supplementary Information to Caregiver‐reported non‐drug treatment patterns in children with autism: A US‐wide study nested in an online research cohort
Article
This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and comp...
Article
Full-text available
Children with autism receive different types of non‐drug treatments. We aimed to describe caregiver‐reported pattern of care and its variability by geography and healthcare coverage in a US‐wide sample of children aged 3–17 years. We recruited caregivers from the Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort. Two online qu...
Article
To understand how parents and physicians make decisions regarding antibiotics and whether a potential associated risk of obesity would alter decisions, we conducted a qualitative study of parents and physicians who care for children. Parent focus groups and physician interviews used a guide focused on experience with antibiotics and perceptions of...
Article
Objectives: Autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) frequently co-occur. Understanding the endophenotype of children with both ASD and ADHD may impact clinical management. In this study, we compare the comorbidity of anxiety and mood disorders in children with ASD, with and without ADHD. Methods: We per...
Article
The Simons Foundation Autism Research Initiative (SFARI) has launched SPARKForAutism.org, a dynamic platform that is engaging thousands of individuals with autism spectrum disorder (ASD) and connecting them to researchers. By making all data accessible, SPARK seeks to increase our understanding of ASD and accelerate new supports and treatments for...
Article
Full-text available
Purpose of Review The Social Communication Questionnaire (SCQ) is a screener for Autism spectrum disorder (ASD) validated for age 4.0 +. There is a clinical need for an ASD screener for children beyond the 30-month age limit of the M-CHAT-R/F. We evaluate the literature on the use of the SCQ in children < 4.0 years. Recent Findings Recent studies...
Article
Full-text available
Objective: This article reviews the data available in 3 large databases for use in conducting studies of children with autism spectrum disorder (ASD). Methods: The article describes the data structure, data elements, and strengths and weaknesses of the 3 data sets. Results: Each of the 3 data sets, the Interactive Autism Network (IAN), the Aut...
Article
Full-text available
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 spe...
Article
Objective: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics. Method: Questionnaires were completed by 101 parents of you...
Article
Objective: Preliminary evidence suggests that omega-3 fatty acids may reduce hyperactivity in children with autism spectrum disorder (ASD). We sought to examine the feasibility of a novel, Internet-based clinical trial design to evaluate the efficacy of this supplement. Method: E-mail invitations were sent to parents of children aged 5 to 8 year...
Conference Paper
Background: This study completes a series of verification/validation studies for a US-based, online, parent-report-based ASD registry with > 46,000 consented participants. Child probands are required to have a professional diagnosis of ASD. Previous studies have verified parent report of professional ASD diagnosis via medical record review (Danie...
Conference Paper
Background: With increased prevalence of childhood ASD, greater numbers of adults are likely to find themselves a grandparent to a child with ASD. Although previous research has typically examined the impact of grandparents upon the adult parents of children with ASD, little is known about the experience of those grandparents themselves. Object...
Article
The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of...
Article
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...
Article
Full-text available
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 i...
Conference Paper
Full-text available
Background: Death, injury, and major family burden due to elopement behavior in children with autism spectrum disorders (ASD) have been reported, yet there has been virtually no research on this topic. In response to the Interagency Autism Coordinating Committee’s urgent call for data to address this gap, the Interactive Autism Network (the largest...
Conference Paper
Background: Both the prevalence of autism spectrum disorders (ASD) and the use of artificial reproductive technologies (ART) have risen in the last decades. There is limited research on the association of ASD and ART. Objectives: 1) To explore the association between ART use and risk of ASD. 2) To determine the relationship between ART use and in...
Conference Paper
Background: Parents of children with autism spectrum disorders (ASD) describe numerous problems accessing specialized services and family supports compared to other children with special health care needs (CSHCN) (Kogan et al., 2008; Krauss, Gulley, Sciegaj & Wells, 2003). These challenges often result in family strain due to high out-of-pocket cos...
Article
Full-text available
We used a national online registry to examine variation in cumulative prevalence of community diagnosis of psychiatric comorbidity in 4343 children with autism spectrum disorders (ASD). Adjusted multivariate logistic regression models compared influence of individual, family, and geographic factors on cumulative prevalence of parent-reported anxiet...
Article
Full-text available
Entry into early intervention depends on both age of first parent concern (AOC) and age at initial autism spectrum disorder (ASD) diagnosis (AOD). Using data collected from a national online registry from 6214 children diagnosed with an ASD between 1994 and 2010 in the US, we analyzed the effect of individual, family, and geographic covariates on A...
Conference Paper
Background: The Simons Simplex Collection (SSC), a project of the Simons Foundation Autism Research Initiative (SFARI), is establishing a repository of genetic and phenotypic information from nearly 3,000 simplex families. The Interactive Autism Network (IAN), an online research initiative with more than 30,000 participants, provides raw data and s...
Conference Paper
Background: Raising a child with an ASD is demanding, both emotionally and financially, and high levels of parent distress are reported. Members of the extended family, particularly grandparents, are also affected, yet little is known about the extent of grandparents’ participation in supporting families of children with ASD, or about the impact th...
Conference Paper
Background: Approximately 500,000 children with special health care needs (CSCHN) make the transition from a pediatric to an adult provider each year (Reiss & Gibson, 2002). The need for transition services for this population puts a strain on the health care system, as well as the affected child and their families. Unfortunately, we know little...
Conference Paper
Background: Recent research has shown that children with autism spectrum disorders (ASD) experience more difficulty accessing quality primary care services through the medical home than children with other chronic health conditions. However, unmet specialty care needs in this group are not well defined. Additional research is needed to identify g...
Conference Paper
Background: A sufficient supply of genetic samples does not exist for comprehensive identification of autism risk alleles. Lee et al. (2010) established accuracy via clinical confirmation of a web-based approach to rapid phenotyping of autism using parent report of community diagnosis and scores on the SCQ-Lifetime. Objectives: To create a we...
Article
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 diagnosi...
Article
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 dat...
Article
Full-text available
While strong familial evidence supports a substantial genetic contribution to the etiology of autism spectrum disorders (ASD), specific genetic abnormalities have been identified in only a small minority of all cases. In order to comprehensively delineate the genetic components of autism including the identification of rare and common variants, ove...
Conference Paper
Background: Elevated rates of affective disorders have been consistently reported in family members of children with autistic spectrum disorder (ASD). Evidence shows that the onset of parental depression and anxiety predates the birth of the child with ASD. A small number of studies suggest a link between maternal depression and specific child ASD...
Conference Paper
Background: There is public concern about a link between routine childhood vaccines and adverse neurological outcomes, specifically the autism spectrum disorders (ASD), focusing on vaccine thimerosal content; measles-mumps-rubella (MMR) vaccine and intestinal disease; and perceived immunologic burden of vaccines. Direct quantitative impact of this...
Conference Paper
Background: Lack of efficiency in subject recruitment and data collection, and lack of public trust in the medical and research establishments, have historically compromised the pace of autism spectrum disorder (ASD) research, especially genetic/etiologic, therapeutic, and health services studies. Given the increasing prevalence of ASD and resultin...
Conference Paper
Background: Autism is known to be substantially inherited but specific molecular genetic abnormalities have only been identified for a small minority of all cases, indicating that there may be a large number of distinct genetic risk factors, each with relatively small explanatory power, either in the form of many rare strong effect variants, or com...
Article
The present study investigated differences among children with three different patterns of autism symptom onset: regression, plateau, and no loss and no plateau. Cross-sectional data were collected from parents of children aged 3-17 years with an autism spectrum disorder (n = 2,720) who were recruited through a US-based online research database. Pa...
Article
Full-text available
To examine patterns of autism spectrum disorder (ASD) inheritance and other features in twin pairs by zygosity, sex, and specific ASD diagnosis. Cross-sectional study. Internet-based autism registry for US residents. Survey results from 277 twin pairs (210 dizygotic [DZ] and 67 monozygotic [MZ]) aged 18 years or younger with at least 1 affected twi...
Article
Patterns of current psychotropic medication use among 5,181 children with autism spectrum disorders (ASD) enrolled in a Web-based registry were examined. Overall, 35% used at least one psychotropic medication, most commonly stimulants, neuroleptics, and/or antidepressants. Those who were uninsured or exclusively privately insured were less likely t...
Article
Full-text available
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....
Conference Paper
Background: According to the Individuals with Disabilities Education Act (IDEA), children with disabilities are entitled to education in the least restrictive environment, and placement outside the regular classroom or school environment should occur only when the nature of the child’s disability exceeds a school’s capacity to provide appropriate...
Conference Paper
Background: Autism spectrum disorder (ASD) studies are often limited to those living near research centers (usually located in larger metropolitan areas) and who are available during the work day. Web-based research studies offer an opportunity to expand access to research initiatives. According to the Pew Internet & American Life Project Network...
Conference Paper
Background: Children with autism spectrum disorders (ASD) living in rural areas may experience difficulties accessing health and educational services, most notably access to well-established interventions such as applied behavioral analysis (ABA). Objectives: To examine diagnostic patterns, educational opportunities, and access to ABA by urba...
Article
Full-text available
Serious bacterial infections are the single most important cause of neonatal mortality in developing countries. Case-fatality rates for neonatal sepsis in developing countries are high, partly because of inadequate administration of necessary antibiotics. For the treatment of neonatal sepsis in resource-poor, high-mortality settings in developing c...
Conference Paper
Background: A number of studies have focused on family members of children diagnosed with an Autism Spectrum Disorder (ASD). Family studies provide an opportunity for researchers to explore the genetic aspects of ASD, as well as the social/psychological impact of the disorder on family members. Parents serve an important role in ASD-research both a...
Conference Paper
Background: Only a few studies have explored height, weight, and BMI in autism spectrum disorder (ASD), with contradictory findings. Since it has been suggested that anthropomorphic differences may provide clues to the underlying biology of ASD, it is important to identify differences in BMI between affected and unaffected individuals. Objectives...
Conference Paper
Background: Families of children with ASD choose from a vast array of possible interventions - with various levels of empirical support - to treat core deficits, behaviors, and related symptoms of autism. Objectives: To determine which treatments/interventions families of children with ASD are using. Methods: Families of children with ASD regis...
Conference Paper
Background: Twin studies provide an opportunity for researchers to disentangle genetic and environmental factors related to Autism Spectrum Disorders (ASD). Multiple twin studies report much higher concordance rates for monozygotic (MZ) twins compared to dizygotic (DZ) twins, supporting a strong genetic component to the disorder. The small sample s...
Conference Paper
Background: Increased head circumference and body size, as well as the presence of high levels of growth-related hormones, have been reported in autism spectrum disorders (ASD). Anthropomorphic differences may provide a clue to the underlying biology of autism. Objectives: To compare birth weight of children with ASD, their unaffected siblings, a...
Article
Full-text available
Autism is among the most clearly genetically determined of all cognitive-developmental disorders, with males affected more often than females. We have analyzed autism risk in multiplex families from the Autism Genetic Resource Exchange (AGRE) and find strong evidence for dominant transmission to male offspring. By incorporating generally accepted r...
Article
Full-text available
The epidemiology of onchocerciasis in much of the Democratic Republic of the Congo (formerly Zaire) is not well established. We report the results of an onchocerciasis rapid assessment survey carried out in 18 villages of the Sankuru River Valley in the central part of this country in preparation for mass distribution of ivermectin. Thirty men from...

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