Publications

Doctor using ultrasound equipment screening of pregnant woman

Prior studies have found no connection between prenatal ultrasound use and ASD. Through an updated study approach, findings from a 2023 SEED study confirm the previous research, showing no association between prenatal ultrasound use and increased risk for ASD. CDC remains committed to exploring potential risk factors for ASD by using world-class data and analytics.

Key Findings

ADDM Network Expands Surveillance to Identify Healthcare Needs and Transition Planning for Youth
Five of CDC’s ADDM Network sites (Arkansas, Georgia, Maryland, Utah, and Wisconsin) began monitoring autism spectrum disorder (ASD) in 2018 among 16-year-old adolescents who were initially identified as having characteristics of ASD in 2010.
(Published: February 25, 2023)

Study Shows Linking Statewide Data for ASD Prevalence is Effective
Linking statewide health and education data is an effective way for states to have actionable local autism spectrum disorder (ASD) prevalence estimates when resources are limited.
(Published: January 18, 2023)

Transitioning from Pediatric to Adult Health Care is Often Difficult for Adolescents with ASD
Only 1 in 13 adolescents with Autism Spectrum Disorder (ASD) received the recommended guidance to move from pediatric to adult health care. Greater coordination among healthcare programs and interdisciplinary training for providers could expand access to services and increase provider comfort in treating the unique healthcare needs of adolescents with ASD, and support healthcare planning as they transition from pediatric to adult health care.
(Published: April 29, 2021)

CDC Releases First Estimates of the Number of Adults Living with Autism Spectrum Disorder in the United States
This study fills a gap in data on adults living with ASD in the United States because there is not an existing surveillance system to collect this information.
(Published May 10, 2020)

SEED Research

Researchers working on the Study to Explore Early Development (SEED) have recently published many studies reporting on important findings related to autism spectrum disorder (ASD). The scientific findings for all SEED studies published to date are summarized below.

Many additional studies are underway.  We will provide summaries of those studies in the future.

SEED investigators have prepared several reports detailing the study methods and describing the children enrolled in the SEED sample. These reports provide foundational information about SEED for other researchers, policymakers, and clinicians.
Community-based service use in preschool children with autism spectrum disorder and associations with insurance status

Rubenstein E, Croen L, Lee LC, Moody, E, Schieve LA, Soke GN, Thomas K, Wiggins L, Daniels J

Research in Autism Spectrum Disorders, 2019

This study examined the association between insurance status and community-based services received outside of school among preschool-aged children with a prior autism spectrum disorder (ASD) diagnosis. Children eligible for autism-related special education services are required by law to receive individualized ASD services in school (“Individuals with Disabilities Education Improvement Act of 2004,” 2004). However, additional community-based services such as behavioral therapy, speech therapy, and occupational therapy are often needed. The Study to Explore Early Development (SEED) provides important information, not available in previous studies, on the use of community-based services by insurance status in preschool-aged children. In this report, insurance status was categorized as private insurance alone, public insurance alone, both private and public insurance, or uninsured. The results showed that about 35% of the children with a prior ASD diagnosis had public insurance alone and 51% had private insurance alone. In addition, 13% had both types of insurance, while few children (1%) were uninsured. The most commonly received services were speech therapy and occupational therapy. Nearly 40% of children received no community-based services at all. After adjusting for sociodemographic variables, insurance status was not associated with the number of different types of community-based services received. However, children with public insurance alone were the least likely to receive behavioral therapy and the most likely to receive psychotropic medication. These findings suggest that many preschool-aged children do not receive community-based services, and the receipt of certain important services varies by insurance type. Increasing access and availability for evidence-based services, especially for children with public insurance only, may improve service use and outcomes for children with ASD.

Assessment of demographic and perinatal predictors of non-response and impact of non-response on measures of association in a population-based case control study: findings from the Georgia Study to Explore Early Development

Schieve LA, Harris S, Maenner MJ, Alexander A, Dowling NF

Emerg Themes Epidemiol., 2018

This report describes characteristics of those who did or did not participate in and complete Georgia SEED between 2007 and 2012. The population (POP) sample was recruited from birth certificates. The autism spectrum disorder (ASD) and developmental disability (DD) groups were recruited from health and special education sources servicing children with developmental disabilities. Children who enrolled in the study were given a comprehensive evaluation to confirm case status. Using birth certificate data, demographics of mothers and children who completed SEED were compared with those who were invited but did not complete the study. Those who did not complete the study included those not located, those located but who declined to participate, or those enrolled in SEED but who dropped out before completing most study steps. Researchers found that all mothers who completed the study tended to be older and had more education than mothers who did not complete the study; yet, they were similar on other demographic factors, such as race/ethnicity and marital status.  Mothers in the ASD group, in particular, were more like to have more education than potential ASD cases invited but who did not complete the study. In two risk factor analyses, associations between the ASD and POP groups were not influenced by the differences in the characteristics of those who participated and completed the study. Assessment of non-response has not yet been done for the other SEED sites. For GA SEED, these findings suggest that differences in participation and completion rates do not appear to affect the study results examined. The information in this report is useful to other researchers conducting epidemiologic studies, especially those seeking to enroll large, diverse population-based samples.

Demographic and Operational Factors Predicting Study Completion in a Multisite Case-Control Study of Preschool Children

Bradley CB, Browne EN, Alexander AA, Collins J, Dahm JL, DiGuiseppi CG, Levy SE, Moody EJ, Schieve LA, Windham GC, Young L, Daniels JL

American Journal of Epidemiology, 2018

This report describes study completion among 3,769 families who enrolled in the first phase of SEED between 2007 and 2011. Families were asked to complete multiple steps for SEED, including phone interviews, filling out forms, participating in an in-person visit to check a child’s development, and providing biological specimens (such as cheek swabs and blood). Researchers found that completion was generally 70% or higher for each study step and 58% of participants completed all key study steps. Researchers found that completion rates varied by families’ demographic characteristics and also the distance they had to travel to the study clinic.  This information is important in helping researchers understand the SEED data already collected and in planning future SEED phases. These study findings also inform researchers on possible ways to improve participation in other future studies.

Demographic Profile of Families and Children in the Study to Explore Early Development (SEED): Case-control Study of Autism Spectrum Disorder.

DiGuiseppi CG, Daniels JL, Fallin DM, Rosenberg SA, Schieve LA, Thomas KC, Windham GC, Goss CW, Soke GN, Currie DW, Singer AB, Lee LC, Bernal P, Croen LA, Miller LA, Pinto-Martin JA, Young LM, Schendel DE.

Disability and Health Journal, 2016

This is one of two reports that describe the characteristics of children enrolled in SEED. This report focuses on sociodemographic characteristics. SEED successfully enrolled a highly diverse sample of participants, including minorities and low socioeconomic status families. The SEED population sample represents racial, ethnic, and demographic diversity in the United States. SEED improves upon other ASD risk factor studies in that it does not rely on administrative data sources, which lack many important details of both child development and maternal risk factors. Nor does it rely on small samples from only a few clinics or schools. SEED collects detailed data in a large and diverse sample.  This provides unique opportunities for researchers to learn more about how socioeconomic characteristics relate to risk factors for ASD and health outcomes in children with ASD.

Autism Spectrum Disorder Symptoms among Children Enrolled in the Study to Explore Early Development (SEED).

Wiggins LD, Levy SE, Daniels J, Schieve L, Croen LA, DiGuiseppi C, Blaskey L, Giarelli E, Lee LC, Pinto-Martin J, Reynolds A, Rice C, Rosenberg CR, Thompson P, Yeargin-Allsopp M, Young L, Schendel D.

Journal of Autism and Developmental Disorders, 2015

This is one of two reports that describe the characteristics of children enrolled in SEED. This report focuses on developmental characteristics. Children enrolled in SEED are divided into four groups: three with children who have varying types of developmental delays and disabilities, including ASD, and one with children from the general population. The report describes how various facets of children’s development vary across these four groups and highlights the many needs of children with ASD and other developmental disabilities.

Using standardized diagnostic instruments to classify children with autism in the Study to Explore Early Development.

Wiggins LD, Reynolds A, Rice CE, Moody EJ, Bernal P, Blaskey L, Rosenberg SA, Lee LC, Levy SE.

Journal of Autism and Developmental Disorders, 2015

This report describes the SEED process for determining whether a child enrolled in the study will be classified as an ASD case. This classification is based on an in-person assessment given by trained SEED clinicians. Children enrolled in the study are screened for autism symptoms by asking their mothers to respond to a brief questionnaire.  Children with an indication of possible autism symptoms are assessed further during an in-person visit.  Clinicians give these children a more in-depth developmental evaluation known as Autism Diagnostic Observation Schedule and ask their mothers or other caregivers to participate in an interview known as the Autism Diagnostic Interview – Revised. Besides providing clinicians with information to determine a child’s ASD classification, these assessments provide valuable information on ASD-specific behaviors and traits, allowing researchers to better understand the different characteristics among children with ASD.

The Study to Explore Early Development (SEED): a multisite epidemiologic study of autism by the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) network.

Schendel DE, Diguiseppi C, Croen LA, Fallin MD, Reed PL, Schieve LA, Wiggins LD, Daniels J, Grether J, Levy SE, Miller L, Newschaffer C, Pinto-Martin J, Robinson C, Windham GC, Alexander A, Aylsworth AS, Bernal P, Bonner JD, Blaskey L, Bradley C, Collins J, Ferretti CJ, Farzadegan H, Giarelli E, Harvey M, Hepburn S, Herr M, Kaparich K, Landa R, Lee LC, Levenseller B, Meyerer S, Rahbar MH, Ratchford A, Reynolds A, Rosenberg S, Rusyniak J, Shapira SK, Smith K, Souders M, Thompson PA, Young L, Yeargin-Allsopp M.

Journal of Autism and Developmental Disorders, 2012

This report describes SEED methods. SEED is one of the largest studies investigating genetic and environmental risk factors for autism spectrum disorder (ASD) and child health and behavioral traits associated with ASD. SEED enrolls preschool-aged children with ASD and other developmental disabilities and children from the general population in six sites across the United States. SEED methods focus on enrolling families from diverse populations in each area. A key strength of SEED includes the collection of in-depth information on child development, which allows researchers to more rigorously classify children into various study groups (ASD, other developmental disabilities, or population controls) than what is done in many other ASD research studies.  In SEED, researchers use standardized assessment tools to determine a children’s final study group and to assess specific behavioral traits among children with ASD. Another key strength is the collection of comprehensive data on child health and potential risk factors for ASD. SEED’s large and diverse sample of study participants allows researchers to analyze data in greater detail than most other ASD studies and answer many important questions about ASD.
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Maternal Psychiatric Conditions, Treatment with SSRIs, and Neurodevelopmental Disorders

Ames JL, Ladd-Acosta C, Fallin MD, Qian Y, Schieve LA, DiGuiseppi, C, Lee LC, Kasten EP, Zhou G, MPH, MD, PhD, Pinto-Martin J, Howerton E, Eaton, CL, Croen LA, PhD

Biological Psychiatry, 2021

A study published online in Biological Psychiatry looked at whether psychiatric conditions during pregnancy, like depression, and the use of selective serotonin reuptake inhibitors (SSRIs) were associated with autism spectrum disorder (ASD) among the children of mothers who were treated. The study found ASD was more common among children of mothers who had psychiatric conditions during pregnancy. However, among the subset of children whose mothers had psychiatric conditions, ASD was not more common among those treated with SSRIs. The authors conclude that this study provides evidence that maternal psychiatric conditions during pregnancy, but not the use of SSRIs, are associated with increased risk of ASD. These findings have implications for clinical decision-making regarding the continuation of SSRI treatment during pregnancy.

Maternal Pre-Pregnancy Weight and Gestational Weight Gain in Association with Autism and Developmental Disorders in Offspring

Susana L. Matias, Michelle Pearl, Kristen Lyall, Lisa A. Croen, Tanja V. E. Kral, Daniele Fallin, Li-Ching Lee, Chyrise B. Bradley, Laura A. Schieve, Gayle C. Windham

Obesity, 2021

A study published online explored whether obesity in mothers prior to pregnancy or weight gain during pregnancy was associated with autism spectrum disorder (ASD) or other developmental disorders in their children.  Mothers classified as having severe obesity (body mass index ≥35 kg/m) prior to pregnancy had a significantly higher risk of having children with ASD and other developmental disorders. The largest amounts of weight gain during pregnancy were associated with ASD, particularly among male children. Since pre-pregnancy weight and weight gain during pregnancy are regularly measured and potentially modifiable, these findings could assist targeting high-risk mothers for early interventions.

Infection and Fever in Pregnancy and Autism Spectrum Disorders: Findings from the Study to Explore Early Development

Croen LA, Qian Y, Ashwood P, Ousseny Z, Schendel D, Pinto-Martin J, Fallin D, Levy S, Schieve LA, Yeargin-Allsopp M, Sabourin KR

Autism Research, 2019

This study evaluated the associations between a child having autism spectrum disorder (ASD) or other developmental disabilities (DD), and whether the child’s mother had an infection during her pregnancy. The Study to Explore Early Development’s (SEED’s) detailed data on type and timing of a mother’s infection and whether the mother also had a fever allowed researchers to conduct a more in-depth analysis on this topic than had been done previously. Study findings showed that overall maternal infections during pregnancy were common, occurring in approximately 60% of women in this study, and were not associated with having a child with ASD or DD. Certain infections – those that occurred in the second trimester and were accompanied by fever (7% of mothers) – were associated with ASD in children. These study findings add to other studies of risk factors that highlight the potential association between maternal health during pregnancy and ASD.

Neonatal jaundice in association with autism spectrum disorder and developmental disorder

Cordero C, Schieve LA, Croen LA, Engel SM, Siega-Riz AM, Herring AH, Vladutiu CJ, Seashore CJ, Daniels JL

Journal of Perinatology, 2019

This study examines the association between a child having jaundice just after birth and autism spectrum disorder (ASD) and other developmental disorders (DDs). Jaundice is a yellow discoloration of the skin and eyes that occurs in some newborns because of a build-up of bilirubin, a substance that forms when blood cells are broken down. While most jaundice lasts only a short time, high levels of bilirubin can affect the developing brain. The Study to Explore Early Development’s (SEED’s) detailed data on the health of mothers and their children allowed researchers to conduct a more in-depth analysis on this topic than had been done previously. Study findings showed that among children who had been born too early (or preterm), newborn jaundice was associated with both ASD and other DDs. However, among children born on time, newborn jaundice was not associated with either ASD or other DDs. This study highlights the association between newborn health and ASD and other DDs.

Early Life Exposure to Air Pollution and Autism Spectrum Disorder: Findings from a Multisite Case-Control Study

McGuinn LA, Windham GC, Messer LC, Di Q, Schwartz J, Croen LA, Moody EJ, Rappold AG, Richardson DB, Neas LM, Gammon MD, Schieve LA, Daniels JL

Epidemiology, 2020

This study used Study to Explore Early Development (SEED) data to examine the association between autism spectrum disorder (ASD) and exposure to air pollutants during key periods of brain development. Particulate matter (PM), or tiny particles of air pollution, and ozone are common air pollutants. Previous studies have found an association between ASD and exposure to these air pollutants; however, previous studies have been unable to look at exposure to these air pollutants in relation to key periods of brain development or account for potential differences in pollutants in regions of the United States. This study looked at air pollutant exposure among participants living in six different areas of the United States (located in California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania) during several critical periods: 3 months before pregnancy, each trimester of pregnancy, the entire pregnancy, and the first year of life. Study findings showed an association between air pollution and ASD by period of exposure; ASD was associated with ozone exposure during the third trimester and with PM exposure during the first year of life. These findings support previous studies of a positive association between ASD and potential exposure to air pollution during the late prenatal period and early postnatal period. Further investigation into these findings may be helpful in increasing our understanding of these association

Air pollution, neighborhood deprivation, and autism spectrum disorder in the Study to Explore Early Development

McGuinn LA, Windham GC, Messer LC, Di Q; Schwartz J, Croen LA, Moody EJ, Rappold AG, Richardson DB, Neas LM, Gammon MD, Schieve LA, Daniels JL

Environmental Epidemiology, 2019

This study used Study to Explore Early Development (SEED) data to examine whether the association between autism spectrum disorder (ASD) and early exposure to air pollution is modified by neighborhood deprivation.  Previous research, including studies using SEED data, have found an association between ASD and exposure to particulate matter (PM), or tiny particles of air pollution, during the first year of life; however, these studies did not look at different measures of neighborhood deprivation, which may also be associated with ASD and are often geographically correlated with air pollution. This study went beyond prior studies by combining data on pollution, roadway proximity, and neighborhood deprivation at the census tract level in six different areas of the United States. Study findings showed that the association between ASD and PM exposure during the first year of life was stronger for children living in neighborhoods of high deprivation, as compared to neighborhoods of moderate or low deprivation. Confirmation of these preliminary findings may be useful in future studies.

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Association Between Breastfeeding Initiation and Duration and Autism Spectrum Disorder in Preschool Children Enrolled in the Study to Explore Early Development

Soke GN, Maenner M, Windham G, Moody E, Kaczaniuk J, DiGuiseppi C, Schieve LA

Autism Res, 2019

This study compared breastfeeding initiation and duration among children with autism spectrum disorder (ASD) to children from the general population without ASD. SEED’s large sample size and diverse sample allowed researchers to conduct a more thorough assessment than previous studies. Study findings showed mothers of children with ASD were just as likely as mothers of children from the general population to initiate breastfeeding. However, among mothers who initiated breastfeeding, those who had children with ASD were less likely than those who had children without ASD to continue breastfeeding for longer than 6 months. The reasons for shorter breastfeeding duration among children with ASD are unclear. A longer duration of breastfeeding might protect a child from developing ASD, but it is also possible that early discontinuation of breastfeeding is related to underlying developmental conditions in children with ASD, such as child irritability, sensory, or health issues. To better understand why the duration of breastfeeding might be shorter among mothers of children with ASD compared to those without ASD, future studies should consider evaluating the reasons women discontinue breastfeeding.

Maternal diabetes and hypertensive disorders in association with autism spectrum disorder

Cordero C, Windham GC, Schieve LA, Fallin MD, Croen LA, Siega-Rizf AM, Engel SM, Herring AH, Stuebe AM, Vladutiu CJ, Daniels JL

Autism Res, 2019

This study examined associations between a child having autism spectrum disorder (ASD) or other developmental disabilities (DDs) and whether the child’s mother had diabetes or hypertension during pregnancy. Diabetes and hypertension are among the most common complications experienced by women during pregnancy. SEED’s large sample size and detailed data about the health of mothers and their children allowed researchers to conduct a more in-depth analysis on this topic than previous studies. Study findings showed that having hypertension during pregnancy was associated with both ASD and other DDs in children compared with not having hypertension during pregnancy. Diabetes during pregnancy was not associated with ASD, but was associated with other DDs. This study highlights the relationship between maternal health during pregnancy and children with ASD and other DDs.

Maternal Pre-pregnancy Body Mass Index (BMI) and Gestational Weight Gain in Relation to Autism Spectrum Disorder (ASD) and Other Developmental Disorders in Offspring

Windham GC, Anderson M, Lyall K, Daniels JL, Kral TV, Croen LA, Levy SE, Bradley CB, Cordero C, Young L, Schieve LA

Autism Res, 2019

This study examined the relationship between mother’s body mass index (BMI) before pregnancy, mother’s weight gain during pregnancy, and associations with ASD and other developmental disabilities (DDs). Although previous studies have reported an association between higher maternal BMI and ASD, having this information, along with weight gain during pregnancy in SEED, allowed researchers to conduct a more in-depth analysis on this topic than previous studies. Study findings show an association between higher pregnancy weight gain and having a child with ASD, and this association was even stronger when the mother was overweight or obese before becoming pregnant. On the other hand, while maternal BMI before pregnancy was associated with having a child with a DD, mother’s weight gain during pregnancy was not. This study highlights the possible effects of maternal weight on child having ASD or DDs and the importance of maintaining a heathy weight before and during pregnancy.

Brief Report: Maternal Opioid Prescription from Preconception through Pregnancy and the Odds of Autism Spectrum Disorder and Autism Features in Children

Rubenstein E, Young JC, Croen LA, DiGuiseppi C, Dowling NF, Lee LC, Schieve L, Wiggins LD, Daniels J

Journal of Autism and Developmental Disorders, 2018

This study examined possible associations between prescription of opioid medications just before and during pregnancy and ASD and other developmental disabilities (DDs). Currently, the information available on this topic is very limited. SEED collects detailed information about mothers’ health histories, including prescribed medication, which allowed researchers to conduct this exploratory analysis. Illicit opioid use was not included in this analysis. The study findings show that approximately 8% of mothers reported receiving an opioid prescription just before or during pregnancy; of these mothers, the majority (76%) received only one prescription. The most common reasons for opioid prescriptions were migraine headaches, injury, and back pain. Mothers who were prescribed opioids just before becoming pregnant were more likely to have a child with ASD or a child with DDs and some autism symptoms. Researchers were limited by small sample sizes; thus, they were not able to conduct a detailed assessment of whether the associations found were related to the medication itself, the reason the mother took the medication, or some other unknown factors that may be associated with opioid use. This study is among the first to assess possible associations between prescription of opioids just before or during pregnancy and ASD and other DDs. More research is needed to understand how opioid use before and during early pregnancy may impact a child’s development.

Family History of Immune Conditions and Autism Spectrum and Developmental Disorders: Findings from the Study to Explore Early Development

Croen, LA, Qian Y, Ashwood, P, Daniels JL, Fallin D, Schendel D, Schieve LA, Singer AB, Zerbo O

Autism Research, 2018

This study examined the relationship between autism spectrum disorder (ASD) and other developmental disorders (DDs) and having a family history of conditions related to immune system functioning. Such conditions include asthma, allergies, and autoimmune disorders such as eczema or psoriasis. Previous studies have suggested some association, but the results about specific conditions varied. SEED’s large sample size and detailed data on specific types of immune disorders allowed researchers to conduct an in-depth analysis on this topic and examine the associations with ASD alongside associations with other DDs. The study findings show that maternal history of eczema or psoriasis and asthma are associated with both ASD and other DDs in children. Researchers also found that children with ASD are more likely to have eczema or psoriasis and allergies than children without ASD. Autoimmune disorders were not notably increased among children with other DDs. This study highlights the relationship between maternal health before and during pregnancy and ASD and other DDs, and provides researchers more information about the health of children with ASD.

Case-control meta-analysis of blood DNA methylation and autism spectrum disorder

Andrews SV, Sheppard B, Windham GC, Schieve LA, Schendel DE, Croen LA, Chopra P, Alisch RS, Newschaffer CJ, Warren ST, Feinberg AP, Fallin MD, Ladd-Acosta C

Molecular Autism, 2018

In this study, researchers used SEED data and data from another study of children and adolescents with and without ASD to learn more about how genes are regulated in children with ASD. Many genes are turned on or off by a process called “methylation.”  Although methylation does not change a person’s actual genes (or genetic code), methylation helps different types of cells do their specific jobs by affecting which genes are turned on and which genes are not. The researchers examined children’s DNA to look for differences in the methylation of genes between children with and without ASD. Previous studies of methylation in relation to ASD were limited by small sample sizes. This study is one of the largest so far to look broadly at methylation patterns in children with and without ASD. The study showed several potential differences in methylation between children in the two groups. Some of the differences suggest links to brain function, and they were consistent with results from previous studies. These findings provide clues as to how genes might be related to ASD in children.

Associations Between the 2nd to 4th Digit Ratio and Autism Spectrum Disorder in Population-Based Samples of Boys and Girls: Findings from the Study to Explore Early Development.

Schieve LA, Tian L, Dowling N, Croen L, Hoover-Fong J, Alexander A, Shapira SK.

Journal of Autism and Developmental Disorders, 2018

This study examined associations between ASD and the ratio of children’s index (2nd) finger length to their ring (4th) finger length. The ratio of finger lengths (or digit ratio) has been linked to the level of sex hormones a child was previously exposed to during pregnancy. Researchers study digit ratios because they rarely have direct measurements of fetal exposure to hormones.  Study findings in boys showed that digit ratio was associated with ASD, but only in certain subgroups, such as children who had ASD and also a birth defect or genetic syndrome. This suggests the association might not have been related to hormone levels, but might instead be explained by genetics.  Study findings in girls showed that digit ratio was associated with ASD and that the association was not limited to certain subgroups of children.  There has been little past study of the association between digit ratio and ASD, particularly in girls.  The findings in this report suggest that hormone exposures during pregnancy might be related to ASD in girls, but many gaps remain in our understanding of the underlying reasons for this association and further research is needed.

Autism Spectrum Disorder and Birth Spacing: Findings from the Study to Explore Early Development (SEED).

Schieve LA, Tian LH, Drews-Botsch C, Windham GC, Newschaffer C, Daniels JL, Lee LC, Croen LA, Danielle Fallin M.

Autism Research, 2017

This study examined whether the amount of time between pregnancies was associated with ASD or other developmental disabilities in children. SEED’s detailed data on ASD subgroups and other developmental disabilities allowed researchers to conduct a more in depth analysis on this topic than those that have been done previously. The study findings show that both shorter and longer time periods between births are associated with having a child with ASD. Children conceived less than 18 months after their mother’s previous birth and children conceived 60 or more months after their mother’s previous birth were more likely to have ASD than children conceived between 18 to 59 months after their mother’s previous birth. The relationship was stronger in children with more severe ASD symptoms. Also, the association between birth spacing and ASD appeared to be unique to ASD, as there was no association found between birth spacing and having children with other developmental disabilities. The association between birth spacing and ASD was not explained by unplanned pregnancy, an underlying fertility disorder in the mother, or high blood pressure or diabetes during pregnancy. The findings from this study can help healthcare providers counsel their patients on pregnancy spacing.

Prenatal Alcohol Exposure in Relation to Autism Spectrum Disorder: Findings from the Study to Explore Early Development (SEED).

Singer AB, Aylsworth AS, Cordero C, Croen LA, DiGuiseppi C, Fallin MD, Herring AH, Hooper SR, Pretzel RE, Schieve LA, Windham GC, Daniels JL.

Paediatric and Perinatal Epidemiology, 2017

This study examined associations between alcohol use just before and during pregnancy and ASD or other developmental disabilities (DDs). Previous studies have shown that high levels of alcohol use in pregnancy are associated with child developmental effects, such as decreased intellectual ability, hyperactivity, learning difficulties, and autism-like traits. This study investigated whether lower levels of alcohol use before and during pregnancy were associated with developmental outcomes. Most mothers of children in SEED reported no or low levels of alcohol use before or during their pregnancies.  In fact, nearly all mothers reported no alcohol use in the second month of pregnancy or later (93-98% depending on month). Therefore, a main focus of the study was on alcohol use in the three months prior to pregnancy or the first month of pregnancy. The study findings show that modest alcohol use during these four months was not associated with increased risk for either ASD or other DDs.  Although this study did not find an association between ASD or other DDs and modest alcohol use before or during pregnancy, women who are pregnant or planning to become pregnant should continue to follow recommendations to avoid alcohol use because of other known effects on infant and child health.

Maternal and Paternal Infertility Disorders and Treatments and Autism Spectrum Disorder: Findings from the Study to Explore Early Development.

Schieve LA, Drews-Botsch C, Harris S, Newschaffer C, Daniels J, DiGuiseppi C, Croen LA, Windham GC.

Journal of Autism and Developmental Disorders, 2017

This study examined associations between ASD and whether, prior to becoming pregnant, a child’s mother had a condition that might have affected her ability to get pregnant (i.e., infertility). The study also looked at whether the mother had received any medical treatments to help her become pregnant or to prevent miscarriage during early pregnancy. SEED’s detailed data on specific types of infertility disorders and treatments allowed researchers to conduct a much more in depth analysis on this topic than those that have been done previously. The study findings show that several infertility disorders in the mother — including blocked tubes, uterine conditions such as fibroids, endometriosis, and polycystic ovarian syndrome — are associated with ASD in children. However, treatments for infertility or to prevent miscarriage were not associated with ASD.  While the reasons for the associations with infertility conditions could not be studied, possible explanations include increased inflammation during pregnancy or problems with the mother’s immune system. The findings from this study add to studies of other risk factors highlighting the relationship between maternal health before and during pregnancy and ASD.

Pleiotropic Mechanisms Indicated for Sex Differences in Autism.

Mitra I, Tsang K, Ladd-Acosta C, Croen LA, Aldinger KA, Hendren RL, Traglia M, Lavillaureix A, Zaitlen N, Oldham MC, Levitt P, Nelson S, Amaral DG, Hertz-Picciotto I, Fallin MD, Weiss LA.

PLOS Genetics, 2016

In this study, researchers used SEED data and data from other studies to investigate sex-specific genetic effects for ASD. The findings indicate involvement of genes on the X chromosome. These findings help us better understand how ASD might differ in girls and boys.

Presence of an Epigenetic Signature of Prenatal Cigarette Smoke Exposure in Childhood.

Ladd-Acosta C, Shu C, Lee BK, Gidaya N, Singer A, Schieve LA, Schendel DE, Jones N, Daniels JL, Windham GC, Newschaffer CJ, Croen LA, Feinberg AP, Daniele Fallin M.

Environmental Research, 2016

This study examined how environmental exposures, such as smoking during pregnancy, may impact gene regulation in children. Gene regulation is the process by which genes in a cell are turned on or off, and it is important for child development. Like other studies, researchers found that smoking during pregnancy affected gene regulation in children. However, while other studies have assessed these effects in children at the time of birth, the SEED sample provided an opportunity to look at gene regulation in older children. This study showed that the same pattern of gene effects was present in older children whose mothers had smoked in pregnancy as had been previously observed in newborns. These findings suggest that smoking during pregnancy may have lasting effects on child health and development.

Maternal Exposure to Occupational Asthmagens During Pregnancy and Autism Spectrum Disorder in the Study to Explore Early Development.

Singer AB, Windham GC, Croen LA, Daniels JL, Lee BK, Qian Y, Schendel DE, Fallin MD, Burstyn I.

Journal of Autism and Developmental Disorders, 2016

This study examined whether ASD was associated with the mother’s workplace exposure to certain chemicals or other substances during pregnancy. Because previous studies have shown associations between maternal asthma and allergy and ASD, researchers were particularly interested in exposure to substances that are known to trigger asthma symptoms, called asthmagens.  Examples of asthmagens include latex, certain drugs and chemicals such as dyes, and some cleaning products. The findings show that mothers of children with ASD had been exposed to slightly higher levels of workplace asthmagens than mothers of children in the general population. However, the difference was small and could have been due to chance. Many gaps remain in our understanding of how environmental exposures might impact the risk for ASD, and further research is needed.
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Many Young Children with Autism Who Use Psychotropic Medication Do Not Receive Behavior Therapy: A Multisite Case-Control Study

Lisa D. Wiggins, PhD, Cy Nadler, PhD, Steven Rosenberg, PhD, Eric Moody, PhD, Nuri Reyes, PhD, Ann Reynolds, MD, Aimee Alexander, MS, Julie Daniels, PhD, Kathleen Thomas, PhD, Ellen Giarelli, PhD, and Susan E. Levy, MD, MPH

Pediatrics, 2021

A study published online in The Journal of Pediatrics explored the rates of psychotropic medication use among preschool-aged children (ages 2-5 years) with autism spectrum disorder (ASD).  While there are no medications to treat core symptoms of ASD, some medications may treat co-occurring symptoms such as attention problems, anxiety, aggression, and self-injurious behaviors.  However, The American Academy of Pediatrics recommends behavior therapy before medication is tried. In the study sample, 37 of 62 (59.7%) children with ASD who used psychotropic medications did not receive the behavior therapy prior to receiving medications.  Pediatricians are an important resource for children and families and can help facilitate behavioral treatment for children with ASD and other behavioral and developmental disorders.

Gastrointestinal Symptoms in 2- to 5-Year-Old Children in the Study to Explore Early Development

Reynolds AM, Soke GN, Sabourin KR, Croen LA, Daniels JL, Fallin MD, Kral TVE, Lee LC, Newschaffer CJ, Pinto-Martin JA, Schieve LA, Sims A, Wiggins LD, Levy SE

Journal of Autism and Developmental Disorders, 2021

This study compared gastrointestinal (GI) symptoms in 2,461 preschool children aged 30–68 months with autism spectrum disorder (ASD) to children with other developmental disabilities (DDs) and children from the general population (POP). Previous studies have shown that GI symptoms are common among children with ASD, but those studies have been limited by small sample sizes and lack of standard measures and comparison groups. Researchers used information from the Study to Explore Early Development (SEED)—including detailed information on GI symptoms, developmental level, and other problems such as anxiety (worry), aggression, and problems related to sleep and attention—to fill these gaps. Parents were asked to complete a detailed questionnaire on GI symptoms and a stool diary for their child. Based on these two instruments, 50.4% of children with ASD had GI symptoms, compared to 42.6% of children with other DDs and 30.6% of POP children. Among children with ASD, researchers also compared children who had lost skills they had previously developed (developmental regression) with those who had not lost previously developed skills and found that more children with developmental regression had GI symptoms (42.9%) than those without regression (31.8%).  Across all three study groups, GI symptoms were related to problems with sleep, attention, anxiety, and aggression.  These findings suggest that GI issues may be more common among children with ASD and are an important healthcare need to address.

Pica, Autism, and Other Disabilities

Fields VL, Soke GN, Reynolds A, Tian LH, Wiggins L, Maenner M, DiGuiseppi C, Kral TVE, Hightshoe K, Schieve LA

Pediatrics, 2021

This study examined pica in preschool-aged children with autism spectrum disorder (ASD), other developmental disabilities (DDs), and children from the general population (POP). Pica is when a person eats non-food items with no nutritional value—such as paper, hair, paint, or dirt—which can result in medical problems. Previous research on pica in children with ASD and other DDs has been limited by small, non-representative samples, and has lacked a general POP comparison group. Researchers from the Study to Explore Early Development (SEED) examined pica in 4,739 preschool children aged 30–68 months with ASD, other DDs, and from the general population (POP).  Children with ASD and other DDs were further classified according to whether they had co-occurring intellectual disability (ID), and among children in the DD group, whether they had some ASD characteristics, for a total of 6 subgroups (ASD without ID, ASD with ID, DD with ASD characteristics, DD with ASD characteristics and ID, DD without ASD characteristics and with ID, and DD without ASD characteristics and without ID). Study results found that 23.2%, 8.4%, and 3.5% of children in the ASD, DD, and POP groups, respectively, had pica. Within the ASD group, pica was reported in 28.1% of children with ID and 14.0% of children without ID. Within the DD group, pica was reported in 26.3% of children with both ID and some ASD characteristics, 12.0% with some ASD characteristics but without ID, 9.7% with ID but without ASD characteristics, and 3.2% with neither ID nor ASD characteristics. These results show that pica may be common in young children with ASD, ASD characteristics, and/or ID, and suggest that young children in these groups can benefit from careful monitoring and safety precautions to prevent pica.  Parent prevention measures can include closely monitoring children, keeping items out of reach, using childproof locks, finding activities that occupy children’s attention, and informing other caregivers of concerns.

Mapping the Relationship Between Dysmorphology and Cognitive, Behavioral, and Developmental Outcomes in Children with Autism Spectrum Disorder

Tian LH, Wiggins LD, Schieve LA, 1, Yeargin-Allsopp M, Dietz P, Aylsworth AS, Elias ER, Julie E. Hoover‑Fong JE, Meeks NJL, Souders MC, Tsai ACH, Zackai EH, Alexander AA, Dowling NF, Shapira SK

Autism Research, 2020

This study looked at whether having more unusual physical traits (dysmorphic features (DFs)) was related to developmental problems and focused on children with autism spectrum disorder (ASD) compared to children from the general population (POP). Previous studies only looked at whether children with ASD and developmental problems had DFs; these studies did not always include a group of children without ASD. In this study, researchers used information from 881 preschool-aged children 2–5 years old enrolled in the Study to Explore Early Development (SEED). The study included an in-person physical examination where photographs, measurements, and hand scans were taken; these items were reviewed by clinical geneticists to determine the number of DFs in each child. This enabled researchers to ask whether a greater number of DFs was related to more developmental problems. The study found that children with ASD and ID had more language, movement, and learning issues as the number of DFs increased. Children with ASD but without ID had more movement and learning issues as the number of DFs increased. These relationships were not observed in the POP group. These findings suggest that DFs may be linked to the cognitive (learning and memory) problems of children with ASD. Additional studies on groups of children with ASD who do or do not have ID could help explain the findings.

Expressive Dominant Versus Receptive Dominant Language Patterns in Young Children: Findings from the Study to Explore Early Development

Reinhartsen DB, Tapia AL, Watson L, Crais E, Bradley C, Fairchild J, Herring AH, Daniels J

Journal of Autism and Developmental Disorders, 2019

This study examined language skills in children with autism spectrum disorder (ASD), children with other developmental disabilities (DD), and typically developing children from the general population (POP). Previous research has shown that children typically understand more vocabulary and complex language than they can express. However, some studies on the language patterns of children with ASD suggest they may be better at expressing than understanding language. Researchers used information from the Study to Explore Early Development (SEED) to categorize 2,571 children aged 30–68 months according to whether they understood or expressed language better or had similar language skills in both areas.  Study findings showed that all three groups of children were better able to understand than express language.  However, 23.6% of children in the ASD group were better at expressing language, as compared to 11.5% of children in the DD group and 10.8% of children in the POP group. Children in the ASD group who were better at expressing than understanding language typically had noticeable problems understanding language and were younger, had lower nonverbal cognitive skills, and had more serious social symptoms of ASD. These findings highlight the need to consider the type of language deficits when designing clinical interventions or treatment programs for children with ASD.

Wandering Among Preschool Children With and Without Autism Spectrum Disorder

Wiggins LD, DiGuiseppi C, Schieve L, Moody E, Gnakub Soke, Giarelli E, Levy S

Journal of Developmental and Behavioral Pediatrics, 2020

This study describes wandering in children ages 4–5 years with a confirmed autism spectrum disorder (ASD) diagnosis, children with a previous but unconfirmed ASD diagnosis (DDprevASD), children with other developmental disabilities (DD), and children from the general population (POP). Wandering, or leaving a supervised space or care of a responsible person, is common among toddlers who are exploring their environment and learning to be independent. Wandering typically becomes much less common after 4 years of age; however, some studies suggest that wandering may be more common among children with ASD than children with other DD and could compromise child safety and increase parental stress. In this study, researchers described 3,896 parent reports of wandering among their 4–5-year-old children enrolled in the Study to Explore Early Development (SEED) between 2007 and 2016. The researchers also examined the relationship between a child’s likelihood to wander and certain behavioral, developmental, and other factors. Study findings showed that wandering in children aged 4–5 years was reported in 60.4% of children with ASD, compared with 41.3% of children with DDprevASD, 22.3% of children with DD, and 12.4% of children in the POP group. Findings also showed that mood, anxiety, attention, and oppositional problems were all associated with wandering behavior, independent of ASD status. These results provide important information for parents and providers on the occurrence of wandering among children with and without ASD and associated conditions (such as anxiety and attention problems) that may place children at increased risk for wandering from safe environments. Moreover, these results may facilitate discussions between parents and providers about safety, prevention, and interventions that may improve the lives of children who wander and their families.

Injury-related treatments and outcomes in preschool children with autism spectrum disorder: Study to Explore Early Development (SEED)

DiGuiseppi C, Sabourin KR, Levy SE, Soke GN, Lee LC, Wiggins L, Schieve LA

Research in Autism Spectrum Disorders, 2019

This study examines the parent-reported treatments and outcomes of medically attended injuries among children with autism spectrum disorder (ASD) living in six different areas (located in California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania) in the United States in 2003–2006, compared to children with other developmental disabilities (DDs) and children from the general population (POP). The Study to Explore Early Development’s (SEED’s) in-depth data on the health of preschool children aged 2–5 years provided researchers with key information on these injuries. For each reported injury, parents were asked whether the injury resulted in loss of consciousness, an emergency department (ED) visit, hospitalization, surgery, or long-term behavior change. Parents were also asked if their child received any medication or injections for each medically attended injury reported. Study results showed that 30% of children in SEED had at least one medically attended injury. Of those children, 83% had at least one injury-related ED visit or hospitalization. Children with ASD were more likely than children from the POP group to have had a surgical procedure for an injury. Children with ASD were also less likely than those with DDs to receive medication or injections to treat injuries. These differences may be a result of characteristics of the child or injury or may reflect the clinicians’ ability to provide certain treatments or judge the severity of the child’s pain due to challenging behaviors associated with ASD. Further research may aid in understanding the differences in treatments prescribed to children with ASD compared to those prescribed to children with DDs or from the general population.

Early life influences on child weight outcomes in the Study to Explore Early Development

Kral TV, Chittams J, Bradley CB, Daniels JL, DiGuiseppi CG, Johnson SL, Pandey J, Pinto-Martin JA, Rahai N, Ramirez A, Schieve LA, Thompson A, Windham G, York W, Young L, Levy SE

Autism, 2019

This study examined overweight and obesity at age 2–5 years in children with and without autism spectrum disorder (ASD) or other developmental disorders (DDs). Obesity rates among U.S. children have increased markedly in recent decades and children with ASD have previously been shown to be at particularly high risk for obesity. SEED’s large sample and detailed data on children with ASD and other DDs allowed researchers to conduct a more in depth analysis on this topic than done previously. Study findings show that children born to mothers who were overweight/obese before becoming pregnant, or gained more weight than recommended during their pregnancies, were more likely to be overweight or obese between the ages of 2–5 years compared with children born to mothers who were underweight or normal weight prior to pregnancy and gained the recommended amount of weight during their pregnancies. These findings were similar for children with ASD, children with other DDs, and children without DDs. However, children with ASD were more likely than children in the other groups to have rapid weight gain in infancy; rapid weight gain was also associated with increased risk for being overweight or obese between ages 2–5 years. This study highlights the importance of maintaining a heathy weight before and during pregnancy and fostering healthy growth during infancy, among all children, including those with and without ASD.

Sleep Problems in 2- to 5-Year-Olds with Autism and Other Developmental Delays
Reynolds AM, Soke GN, Sabourin KR, Hepburn S, Katz T, Wiggins LD, Schieve LA, Levy SE

This study assessed sleep problems, such as difficulties going to sleep or staying asleep through the night, in preschool-aged children with ASD, in comparison to children with other developmental disabilities (DDs) and children in the general population. SEED’s large sample and detailed data on preschoolers allowed researchers to conduct a more in-depth analysis on this topic than in previous studies. Study findings show that children with ASD and children with other DDs who have some ASD symptoms have more sleep problems than children with DDs without ASD symptoms and children in the general population. Even when researchers used a conservative definition to classify children as having sleep problems, 47% of children with ASD and 57% of children with other DDs who had some ASD symptoms were reported to have sleep problems, compared to 29% of children with DDs but no ASD symptoms and 25% of children in the general population. Sleep is important for development in young children. Addressing sleep problems among children with ASD and children with other DDs who have ASD symptoms is an important component of healthcare needs in this population.

A Novel Approach to Dysmorphology to Enhance the Phenotypic Classification of Autism Spectrum Disorder in the Study to Explore Early Development
Shapira SK, Tian LH, Aylsworth AS, Elias ER, Hoover-Fong JE, Meeks NJL, Souders MC, Tsai AC, Zackai EH; Alexander AA, Yeargin-Allsopp M, Schieve LA

This study used data from SEED to develop a new method to systematically classify certain physical features in children. The purpose of this system is to evaluate dysmorphology, which is the assessment of physical features that do not follow the typical pattern of growth and development. Children with multiple dysmorphic features often have an underlying genetic condition or had early pregnancy exposures that affected their development during the pregnancy.  The SEED dysmorphology classification method is more comprehensive than that used in previous studies. The findings from this study indicate that approximately 17% of children with ASD have a high number of dysmorphic features, and hence, meet the criteria for classification as dysmorphic. In contrast, approximately 5% of children from the general population control group met the criteria for classification as dysmorphic. Some, but not all, of the dysmorphology differences between children with and without ASD were explained by previously recognized and diagnosed genetic conditions and birth defects, which both occur more commonly in children with ASD. This is the first report of dysmorphology among children with ASD in a diverse U.S. population.

Relationship of Weight Outcomes, Co-occurring Conditions, and Severity of Autism Spectrum Disorder in the Study to Explore Early Development

Levy SE, Pinto-Martin JA, Bradley CB, Chittams J, Johnson SL, Pandey J, Alison Pomykacz A, Ramirez A, Reynolds A, Rubenstein E, Schieve LA, Shapira SK, Thompson A, Young L, Kral TV

Journal of Pediatrics, 2018

This study examined overweight and obesity among children with ASD, other developmental disabilities (DDs), and children from the general population. Study findings show that children with ASD or DDs were more likely to be overweight or obese than children from the general population. The proportion of children who were either overweight or obese was 28% in those with ASD, 25% in children with another DD, and 20% in children in the general population. Children with ASD or DDs were also more likely to have birth defects, medical disorders, seizure disorders, attention-deficit/hyperactivity disorder (ADHD), and psychiatric disorders than children from the general population. After controlling for these co-occurring conditions, the association between ASD and overweight or obesity was not changed, but the association between overweight and obesity and other DDs was reduced. In addition, among children with ASD, those with moderate or severe symptoms of ASD were more likely to be overweight or obese than children with mild ASD symptoms. Addressing overweight and obesity among children with ASD and other DDs is an important component of healthcare needs in this population.

Infections in Children with Autism Spectrum Disorder: Study to Explore Early Development (SEED)

Sabourin KR, Reynolds A,  Schendel D, Rosenberg S, Croen L, Pinto-Martin JA, Schieve LA, Newschaffer C, Lee LC, DiGuiseppi C

Autism Research, 2018

This study evaluated the association between early childhood infections and ASD and other developmental disabilities (DDs). SEED’s large sample size allowed researchers to conduct a more in-depth analysis on this topic than previous studies. The study findings show that children with ASD were more likely than children with other DDs and children from the general population to have had an infection in the first 28 days of life (early infection). Overall, 4.9% of children with ASD, 4.2% of children with other DDs, and 2.2% of children in the general population had an early infection recorded in their medical records. Children with ASD were also more likely to have an infection in the first 3 years of life than children in the general population, but children with ASD had similar rates of infection during their first 3 years as children with other DDs. This study highlights that ASD is associated with infections very early in the child’s life.

Brief Report: Self-Injurious Behaviors in Preschool Children with Autism Spectrum Disorder Compared to Other Developmental Delays and Disorders.

Soke GN, Rosenberg SA, Rosenberg CR, Vasa RA, Lee LC, DiGuiseppi C.

Journal of Autism and Developmental Disorders, 2018

This study assessed self-injurious behavior, or SIB, among preschool-aged children with ASD in comparison to children with other developmental disabilities (DDs). The study showed that SIB is common in two groups of preschool-aged children – those with ASD and those for whom some autism-related symptoms are reported by their mother or other caregiver, even though they didn’t meet the criteria to be classified as an ASD case.  SIB was much less common in children with other DDs whose mother or caregiver did not report autism-related symptoms. These findings suggest that clinicians working with young children with DDs consider screening for SIB, even in children who do not have an ASD diagnosis.

Associations between Parental Broader Autism Phenotype and Child Autism Spectrum Disorder Phenotype in the Study to Explore Early Development.

Rubenstein E, Wiggins LD, Schieve LA, Bradley C, DiGuiseppi C, Moody E, Pandey J, Pretzel RE, Howard AG, Olshan AF, Pence BW, Daniels J.

Autism, 2018

This study assessed how the variation in developmental features among children with ASD was related to their parents’ own autism-related traits.  The presence of autism traits in family members of children with ASD is commonly referred to as the “broader autism phenotype” or BAP. The study findings show that if one or both parents have traits consistent with BAP, the child’s ASD is more likely to fall within a certain clinical presentation than if neither parent has traits consistent with BAP.  This clinical presentation in the child is characterized by average nonverbal abilities, mild language and motor delays, and increased frequency of other co-occurring developmental difficulties such as anxiety, depression, aggression, and attention difficulties.  The findings reported in this study could help better our understanding of the genetics of ASD.

The Prevalence of Gluten Free Diet Use among Preschool Children with Autism Spectrum Disorder.

Rubenstein E, Schieve L, Bradley C, DiGuiseppi C, Moody E, Thomas K, Daniels J.

Autism Research, 2017

This study estimated the proportion of children with ASD who had been on a gluten free diet. Altogether, 20% of preschool-aged children with ASD were currently or previously using a gluten free diet. In contrast, only 1% of children in the general population control group were using a gluten free diet. Children with ASD who also had gastrointestinal problems or had previously had a developmental regression were more likely to use a gluten free diet. This study demonstrates that gluten free diets are commonly used among children with ASD. More research is needed on the effectiveness of a gluten free diet in managing both gastrointestinal and behavioral symptoms related to ASD.

Injuries in Children with Autism Spectrum Disorder: Study to Explore Early Development (SEED).

DiGuiseppi C, Levy SE, Sabourin KR, Soke GN, Rosenberg S, Lee LC, Moody E, Schieve LA.

Journal of Autism and Developmental Disorders, 2017

This study evaluated injuries in preschool-aged children with and without ASD and other developmental disabilities (DDs). Parents of children were asked whether their child had ever had an injury that required medical attention, and what types of injuries had occurred. The study findings showed that injuries were common in all groups of children and there was little difference between groups. Parents reported injuries for 32% of children with ASD, 28% of children with other DDs, and 30% of children in the general population. The most common injuries were open wounds and fractures and the most common reason for injuries was falls. While there was a slight difference in injuries between children with ASD and other DDs, further study found that this was largely explained by a higher level of attention problems in the children with ASD.

Homogeneous Subgroups of Young Children with Autism Improve Phenotypic Characterization in the Study to Explore Early Development.

Wiggins LD, Tian LH, Levy SE, Rice C, Lee LC, Schieve L, Pandey J, Daniels J, Blaskey L, Hepburn S, Landa R, Edmondson-Pretzel R, Thompson W.

Journal of Autism and Developmental Disorders, 2017

This study used a complex computer program to assess the wide range of developmental characteristics among children with ASD.  Researchers identified four subgroups of children within the ASD group: 1) children with mild language delay and average cognitive functioning, but increased cognitive rigidity (or difficulty changing behaviors); 2) children with significant developmental delay, below average cognitive functioning, and repetitive motor behaviors; 3) children with general developmental delay, below average cognitive functioning, and moderate to highly severe autism symptoms; and 4) children with mild language and motor delays, but increased cognitive rigidity and high rates of problem behaviors. This study shows how information on developmental characteristics can be studied using advanced statistical methods to better understand ASD.  This information might also be useful in understanding children’s future health and development.

Self-injurious Behaviors in Children with Autism Spectrum Disorder Enrolled in the Study to Explore Early Development.

Soke GN, Rosenberg SA, Rosenberg CR, Vasa RA, Lee LC, DiGuiseppi C.

Autism, 2017

This study assessed self-injurious behavior, or SIB, among children with ASD. SIB includes head-banging, hair-pulling, arm-biting, scratching, and hitting oneself. SIB is usually mild, but can be severe in some children and may result in injuries requiring medical care. Children with severe SIB may miss out on educational and social activities. This study showed that in the SEED sample, about 28% of preschool-aged children with ASD displayed SIB currently, and 47% had previously displayed SIB. Researchers found SIB was more common in children with low adaptive behavior scores and gastrointestinal, sleep, and behavioral problems. While its causes are not completely understood, identifying SIB early is helpful because it may reduce the likelihood of more severe SIB later.
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In addition to research on ASD risk factors and on the developmental characteristics and health outcomes of children with ASD or other developmental disabilities, the wealth of data collected in SEED has allowed researchers to address critical gaps in our understanding of the performance of various ASD screening and assessment tools and to contribute to the development of genetic laboratory tests.
Temperament Similarities and Differences: A Comparison of Factor Structures from the Behavioral Style Questionnaire in Children with and Without Autism Spectrum Disorder

Barger B, Moody EJ, Ledbetter C, D’Abreu L, Hepburn S, Rosenberg SA

Journal of Autism and Developmental, 2019

This study assessed the performance of the Behavioral Style Questionnaire (BSQ), a commonly used measure of temperament, in children aged 2–5 years with and without autism spectrum disorder (ASD). The BSQ contains 100 questions designed to measure nine different behavioral tendencies, or temperaments, that affect how well children respond to their environment. Previous research has suggested that the BSQ may function differently for children with ASD compared with typically developing children. As such, researchers used Study to Explore Early Development (SEED) data to compare the behavioral tendencies the BSQ identified among children diagnosed with ASD and among children from the general population. Study findings showed that the BSQ did not identify the behavioral tendencies that it was originally designed to measure. Moreover, while the BSQ measured certain behavioral tendencies similarly among children with ASD and children from the general population, for other behavioral tendencies it did not. One behavioral tendency, “Negative Social Interactions”, was unique among children with ASD, and was not found among children from the general population. These findings suggest that more research may help us better understand how the BSQ performs in different groups of children, including children with ASD.

ASD Screening with the Child Behavior Checklist/1.5-5 in the Study to Explore Early Development

Levy SE, Rescorla LA, Chittams JL, Kral TJ, Moody EJ, Pandey J, Pinto-Martin JA, Pomykacz A, Ramirez A, Reyes N, Rosenberg CR, Schieve LA, Thompson A, Young L, Zhang J, Wiggins L

J Autism Dev Disord., 2019

This study assessed the performance of a general developmental assessment tool, known as the Child Behavior Checklist (CBCL), as a screening tool for autism spectrum disorder (ASD) symptoms in preschool-aged children. The CBCL is a broad-spectrum checklist that includes 99 items completed by a parent or a caregiver. Researchers in this study were interested in a subset of 13 items related to pervasive developmental problems. Previous research on this topic produced inconsistent results. SEED’s large sample of children with and without ASD and other developmental disabilities (DDs) allowed for a more thorough assessment. The study results showed that scores from the 13-item subscale were significantly different for children in the ASD group and the DD with ASD features group, compared to children in the DD without ASD features group and the population control group. These findings suggest that this CBCL subscale was effective at identifying children with ASD features needing further evaluation and supports its use as an ASD screening tool. The findings are particularly noteworthy because the CBCL is already widely used by schools and health professionals to screen for other developmental issues such as attention, anxiety, and depression.

DSM-5 criteria for autism spectrum disorder maximizes diagnostic sensitivity and specificity in preschool children

Wiggins LD, Rice CE, Barger B, Soke GN, Lee LC, Moody E, Edmondson-Pretzel R, Levy SE

Soc Psychiatry Psychiatr Epidemiol, 2019

The Diagnostic and Statistical Manual of Mental Disorders (DSM) specifies standardized criteria for diagnosing individuals with autism spectrum disorder (ASD) and other conditions. Criteria for diagnosing ASD were revised between the fourth (DSM-IV-TR) and the fifth edition of the manual (DSM-5). The purpose of this study was to compare DSM-IV-TR and DSM-5 definitions of ASD using information from comprehensive developmental evaluations completed with preschool children enrolled in the Study to Explore Early Development (SEED). This study was important because it compared DSM-IV-TR and DSM-5 definitions of ASD by evaluating children at a time when they often are first diagnosed, using both criteria in a single clinic visit. Study findings showed that DSM-5 criteria had the best balance between identifying true ASD cases, while ruling out children with other developmental disorders, when compared to DSM-IV-TR criteria. Researchers also found good agreement between DSM-5 and DSM-IV-TR for autistic disorder and moderate agreement for a less stringent definition of ASD known as pervasive developmental disorder not otherwise specified (PDD-NOS). These findings support the DSM-5 criteria for ASD in preschool-aged children.

Bayesian Correction for Exposure Misclassification and Evolution of Evidence in Two Studies of the Association between Maternal Occupational Exposure to Asthmagens and Risk of Autism Spectrum Disorder

Singer AB, Fallin MD, Burstyn I

Current Environmental Health Reports, 2018

In this study, researchers used SEED data and data from another study of children with and without ASD to assess how potential errors in coding the data for certain risk factors might influence the findings of epidemiologic studies. Researchers often want to study the effects of certain exposures during pregnancy but may not have the exact data they need. It is rare to have biologic measurements of the chemicals women were exposed to during pregnancy.  Therefore, studies often rely on related information to classify study participants as “likely exposed” or “not exposed” to certain chemicals. For example, studies often use information on a person’s job — such as type of job and industry where the person worked — to estimate possible chemical exposures from their workplace. In this study, researchers used a statistical method to address the possibility that certain job coding schemes could result in errors when evaluating associations between workplace exposures and ASD. They propose a way researchers might use this method in future studies to assess, and possibly correct, exposure classification errors.

Influence of Family Demographic Factors on Social Communication Questionnaire Scores.

Rosenberg SA, Moody EJ, Lee LC, DiGuiseppi C, Windham GC, Wiggins LD, Schieve LA, Ledbetter CM, Levy SE, Blaskey L, Young L, Bernal P, Rosenberg CR, Fallin MD.

Autism Research, 2018

This study assessed how the responses to a standardized questionnaire to screen for autism symptoms varied by family demographic characteristics. The study findings indicate that test performance was different in families with an indication of low versus higher socioeconomic status. These findings are important for both researchers and clinicians using autism screening questionnaires; they should be mindful that these tools might perform differently in various sociodemographic groups of children and their parents.

The Broader Autism Phenotype in Mothers is Associated with Increased Discordance Between Maternal-Reported and Clinician-Observed Instruments that Measure Child Autism Spectrum Disorder.

Rubenstein E, Edmondson Pretzel R, Windham GC, Schieve LA, Wiggins LD, DiGuiseppi C, Olshan AF, Howard AG, Pence BW, Young L, Daniels J.

Journal of Autism and Developmental Disorders, 2017

This study assessed whether parents who have autism traits reported their children’s potential autism symptoms in a similar way as parents without an indication of autism traits. The findings indicate that parents with autism traits report more autism traits in their children compared to parents without autism traits, but parent reports do not always match clinician assessments based on observed behaviors in the child. It is possible that parents with some autism traits are more adept at identifying subtle characteristics of autism in their child. Another possible explanation for the study findings is that questions on various child behaviors could be interpreted differently by parents with and without autism traits. Further study is needed. The findings reported in this study could help better our understanding of developmental assessment results in young children.

Screening for Autism with the SRS and SCQ: Variations across Demographic, Developmental and Behavioral Factors in Preschool Children.

Moody EJ, Reyes N, Ledbetter C, Wiggins L, DiGuiseppi C, Alexander A, Jackson S, Lee LC, Levy SE, Rosenberg SA.

Journal of Autism and Developmental Disorders, 2017

This study assessed and compared the performance of two standardized questionnaires to screen for autism symptoms. The accuracy of each questionnaire varied depending on the child’s level of developmental functioning and family sociodemographic traits. For example, the instruments were less accurate when children had high levels of challenging behaviors or lower levels of developmental functioning. Test performance also varied in families with indication of lower versus higher socioeconomic status. These findings are important for both researchers and clinicians using autism screening questionnaires; they should be mindful that these tools perform differently in various sociodemographic groups of children and their parents.

Brief Report: The ADOS Calibrated Severity Score Best Measures Autism Diagnostic Symptom Severity in Pre-School Children.

Wiggins LD, Barger B, Moody E, Soke GN, Pandey J, Levy S.

Journal of Autism and Developmental Disorders, 2017

This report describes SEED methodology for assessing autism symptom severity among children with ASD. Measuring a child’s autism symptoms is often challenging because many children with ASD also have other developmental conditions. This can make it difficult to separate a child’s social and communication challenges from the child’s other developmental delays or conditions. Researchers evaluated several measures of autism severity and found that the Autism Diagnostic Observation Schedule (ADOS) calibrated severity score best measured the severity of core autism symptoms in a way that did not include symptoms of other developmental conditions. Because of findings from this study, the ADOS calibrated severity score will be used in other SEED research to help scientists better understand how the severity of autism symptoms relates to ASD risk factors and health outcomes.

Cross-tissue Integration of Genetic and Epigenetic Data Offers Insight into Autism Spectrum Disorder.

Andrews SV, Ellis SE, Bakulski KM, Sheppard B, Croen LA, Hertz-Picciotto I, Newschaffer CJ, Feinberg AP, Arking DE, Ladd-Acosta C, Fallin MD.

Nature Communications, 2017

In this study, researchers used SEED data and data from other studies to learn more about genetics and genetic regulation in children with ASD. While it is well-understood that genetics are related to ASD, many unanswered questions remain, such as how certain genes are turned on or off. The information from this study provides insights about how certain genes might be related to ASD.

“Gap Hunting” to Characterize Clustered Probe Signals in Illumina Methylation Array Data.

Andrews SV, Ladd-Acosta C, Feinberg AP, Hansen KD, Fallin MD.

Epigenetics & Chromatin, 2016

This study assessed new laboratory approaches to analyzing information on genetics collected through SEED. The findings contribute to the growing literature on how genes and environmental factors might interact in a way that increases the risk for ASD. While this study does not directly study these interactions, researchers describe and demonstrate how new laboratory approaches could help identify genetic associations.
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Feature Articles

Autism Research and Resources from CDC
April is Autism Acceptance Month. The recognition raises awareness about autism acceptance and promotes inclusion and connectedness for people with autism.

Higher Autism Prevalence and COVID-19 Disruptions
Autism spectrum disorder (ASD) continues to affect many children and families. The COVID-19 pandemic brought disruptions to early ASD identification among young children. These disruptions may have long-lasting effects as a result of delays in identification and initiation of services.

Past, Present, and Future Impact of SEED
Since the launch of SEED in 2003, CDC has worked with its partners to learn more about the needs of children with autism spectrum disorder (ASD) and other developmental disabilities so that families, communities, and healthcare providers can deliver the supports and services needed to thrive.

Why Act Early if You’re Concerned about Development?
Act early on developmental concerns to make a real difference for your child and you! If you’re concerned about your child’s development, don’t wait. You know your child best.

Easy Reads

Early Identification and Prevalence of Autism Among 4-year-old and 8-year-old Children: An Easy Read Summary
This is an Easy-Read Summary of two reports. The first report is about identifying autism early among 4-year-old children. The second report is on the number of 8-year-old children with autism. (Published December 2, 2021)

Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood: An Easy-Read Summary
The is an Easy-Read Summary (Published April 30, 2021)

Identifying Autism Among Children: An Easy-Read Summary
This is an Easy-Read Summary of two reports. The first report is about the number of 8-year-old children with autism. The second report is about identifying autism early among 4-year-old children. (Published March 27, 2020)

Articles by Year

Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning
Journal of Adolescent Health, 2023.
Hughes MM, Shaw KA, Patrick ME, et al.
[Read article]

Statewide county-level autism spectrum disorder prevalence estimates—seven U.S. states, 2018.
Annals of Epidemiology, 2023.
Shaw KA, Williams S, Hughes MM, et al.
[Read article]

The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016.
Public Health Reports, 2023.
Hughes MM, Shaw KA, DiRienzo M, et al.
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Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020.
MMWR Surveillance Summaries, 2023. 72(2): p. 1.
Maenner MJ, Warren Z, Williams AR, et al.
[Read article] [Easy Read Summary]

Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020.
MMWR Surveillance Summaries, 2023. 72(1): p. 1.
Shaw KA, Bilder DA, McArthur D, et al.
[Read article] [Easy Read Summary]

Social Vulnerability and Prevalence of Autism, Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP).
Annals of Epidemiology, 2023.
Patrick ME, Hughes MM, Ali A, et al.
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Individualized Education Programs and Transition Planning for Adolescents With Autism.
Pediatrics, 2023.
Hughes MM, Kirby AV, Davis J, et al.
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Toileting Resistance Among Preschool-Age Children with and Without Autism Spectrum Disorder.
Journal of Developmental & Behavioral Pediatrics, 2022.
Wiggins LD, Nadler C, Hepburn S, et al.
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Defining in Detail and Evaluating Reliability of DSM-5 Criteria for Autism Spectrum Disorder (ASD) Among Children
Journal of Autism and Developmental Disorders, 2022: p. 1-13.
Rice CE, Carpenter LA, Morrier MJ, et al.
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Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?
Paediatric and Perinatal Epidemiology, 2022.
Bradley CB, Tapia AL, DiGuiseppi CG, et al.
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Features that best define the heterogeneity and homogeneity of autism in preschool‐age children: A multisite case–control analysis replicated across two independent samples.
Autism Research, 2021.
Wiggins LD, Tian LH, Rubenstein E, et al.
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Early identification of autism spectrum disorder among children aged 4 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2018.
MMWR Surveillance Summaries, 2021. 70(10): p. 1.
Shaw KA, Maenner MJ, Baikan AV, et al.
[Read article] [Easy Read Summary]

Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2018.
MMWR Surveillance Summaries, 2021. 70(11): p. 1.
Maenner MJ, Shaw KA, Bakian AV, et al.
[Read article] [Easy Read Summary]

Progress and Disparities in Early Identification of Autism Spectrum Disorder: Autism and Developmental Disabilities Monitoring Network, 2002-2016.
Journal of the American Academy of Child & Adolescent Psychiatry, 2021.
Shaw KA, McArthur D, Hughes MM, et al.
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Peri-Pregnancy Cannabis Use and Autism Spectrum Disorder in the Offspring: Findings from the Study to Explore Early Development.
Journal of Autism and Developmental Disorders, 2021: p. 1-8.
DiGuiseppi C, Crume T, Van Dyke J, et al.
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Comparison of 2 Case Definitions for Ascertaining the Prevalence of Autism Spectrum Disorder Among 8-Year-Old Children.
Am J Epidemiol, 2021. 190(10): p. 2198-2207.
Maenner MJ, Graves SJ, Peacock G, et al.
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Heterogeneity in Autism Spectrum Disorder Case-Finding Algorithms in United States Health Administrative Database Analyses.
Journal of Autism and Developmental Disorders, 2021: p. 1-14.
Grosse SD, Nichols P, Nyarko K, et al.
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Maternal prepregnancy weight and gestational weight gain in association with autism and developmental disorders in offspring.
Obesity, 2021. 29(9): p. 1554-1564.
Matias SL., Pearl M, Lyall K, et al.
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Maternal psychiatric conditions, treatment with selective serotonin reuptake inhibitors, and neurodevelopmental disorders.
Biological psychiatry, 2021. 90(4): p. 253-262.
Ames JL, Ladd-Acosta C, Fallin MD,  et al.
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A preliminary epidemiologic study of social (pragmatic) communication disorder relative to autism spectrum disorder and developmental disability without social communication deficits.
Journal of autism and developmental disorders, 2021. 51(8): p. 2686-2696.
Ellis Weismer S, Tomblin JB, Durkin MS, et al.
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Healthcare costs of pediatric autism spectrum disorder in the United States, 2003–2015.
Journal of autism and developmental disorders, 2021. 51(8): p. 2950-2958.
Zuvekas SH, Grosse SD, Lavelle TA, et al.
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Association between pica and gastrointestinal symptoms in preschoolers with and without autism spectrum disorder: Study to Explore Early Development.
Disability and Health Journal, 2021. 14(3): p. 101052.
Fields VL., Soke GN, Reynolds A, et al.
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Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood—Four US Sites, 2018–2020.
Morbidity and Mortality Weekly Report, 2021. 70(17): p. 605.
Powell PS, Pazol K, Wiggins LD, et al.
[Read article] [Easy Read Summary]

Evaluation of sex differences in preschool children with and without autism spectrum disorder enrolled in the study to explore early development.
Res Dev Disabil, 2021. 112: p. 103897.
Wiggins L.D, Rubenstein E, Windham G, et al.
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Pica, Autism, and Other Disabilities.
Pediatrics, 2021. 147(2).
Fields VL., Soke GN, Reynolds A, et al.
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Many Young Children with Autism Who Use Psychotropic Medication Do Not Receive Behavior Therapy: A Multisite Case-Control Study.
J Pediatr, 2021. 232: p. 264-271.
Wiggins LD, Nadler C, Rosenberg S, et al.
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Gastrointestinal Symptoms in 2-to 5-Year-Old Children in the Study to Explore Early Development.
Journal of Autism and Developmental Disorders, 2021. 51(11): p. 3806-3817.
Reynolds AM, Soke GN, Sabourin KR, et al.
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A Distinct Three-Factor Structure of Restricted and Repetitive Behaviors in an Epidemiologically Sound Sample of Preschool-Age Children with Autism Spectrum Disorder.
J Autism Dev Disord, 2021. 51(10): p. 3456-3468.
Hiruma L, Edmondson Pretzel R, Tapia AL, et al.
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Spending on young children with autism spectrum disorder in employer-sponsored plans, 2011–2017.
Psychiatric Services, 2021. 72(1): p. 16-22.
Grosse SD, Ji X, Nichols P, et al.
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A preliminary Epidemiology Study of Social (Pragmatic) Communication Disorder Relative to Autism Spectrum Disorder and Developmental Disability Without Social Communication Deficits.
Journal of Autism and Developmental Disorders, 2020: p. 1-11.
Ellis-Weismer S, Rubenstein E, Wiggins L, et al.
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CE: From the CDC: Understanding Autism Spectrum Disorder.
AJN The American Journal of Nursing, 2020. 120(10):p. 30-37.
Christensen D, Zubler J
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Wandering Among Preschool Children with and Without Autism Spectrum Disorder.
J Dev Behav Pediatr, 2020. 41(4): p. 251-257.
Wiggins L, DiGuiseppi C, Schieve L, et al.
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Early identification of autism spectrum disorder among children aged 4 years—Early Autism and Developmental Disability Monitoring Network, six sites, United States, 2016.
MMWR Surveillance Summaries, 2020. 69(3): p. 1.
Shaw KA, Maenner MJ, Baio J, et al.
[Read article] [Easy Read Summary]

Prevalance of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2016.
MMWR Surveillance Summaries, 2020. 69(4): p. 1.
Maenner MJ, Shaw KA, Baio J, et al.
[Read article] [Easy Read Summary]

Disparities in documented diagnoses of autism spectrum disorder based on demographic, individual, and service factors.
Autism Research, 2020. 13(3): p. 464-473.
Wiggins LD, Durkin M, Esler A, et al.
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Neonatal jaundice in association with autism spectrum disorder and developmental disorder.
J Perinatol, 2020. 40(2): p. 219-225.
Cordero C, Schieve LA, Croen LA, et al.
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Early Life Exposure to Air Pollution and Autism Spectrum Disorder: Findings from a Multisite Case-Control Study.
Epidemiology, 2020. 31(1): p. 103-114.
McGuinn LA, Windham GC, Kalkbrenner AE, et al.
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Mapping the Relationship between Dysmorphology and Cognitive, Behavioral, and Developmental Outcomes in Children with Autism Spectrum Disorder.
Autism Res, 2020. 13(7): p. 1227-1238.
Tian LH, Wiggins LD, Schieve LA, et al.
[Read article]

Search a database of articles that have been published by CDC authors within the National Center on Birth Defects and Developmental Disabilities from 1990 to present.

2023 Community Report on Autism. The latest ADDM Network Data