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Explore Examples of ASD Data in Action


This page shares several examples of how others have used ASD data. In particular, you can find examples of recent peer-reviewed articles, data briefs, news articles, and blog posts below which have used ASD data from one of the three surveys hosted on the Data Resource Center.

These three surveys include the 2011 Survey of Pathways to Diagnosis and Services, 2011/12 National Survey of Children’s Health (NSCH), and the 2009 /10 National Survey of Children with Special Health Care Needs (NS-CSHCN). We highly encourage you to explore the ASD data in these surveys using our quick data table or comprehensive chartbook.

We also encourage you to contact us at info@cahmi.org to share more examples to highlight on this page.

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Data briefs


National Autism Indicators Report: Transition into Young Adulthood. Roux, Anne M, Shattuck, Paul T, Rast, Jessica E, Rava, Julianna A, Anderson, Kristy A, Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, April 2015.

The National Autism Indicators Report presents evidence about a wide range of experiences and outcomes of young adults on the Autism spectrum between high school and their early 20s.

Health Care Quality for Children: The position of children with Autism Spectrum Disorder. Bethell, Christina, Lindly, Olivia, Kogan, Michael, Zuckerman, Katherine, chapter in the Comprehensive Guide to Autism, 2014.

As this chapter demonstrates, health-care experiences, quality, and outcomes for children with ASD are poorer than for children with other types of health conditions, likely in part due to the complex nature of ASD and its all-encompassing effect on children and their families. Fewer than one in four children with ASD meet standards of a defined minimum quality of care index, and less than half receive care that meets all or all but one of the core outcomes performance standards defined by the Maternal and Child Health Bureau’s System of Care for Children with Special Health Care Needs. Improvements to ASD care are greatly needed so that children with ASD can attain their full health and developmental potentials.

National Profile of Children with Special Health Care Needs and Autism Spectrum Disorders, Data Resource Center, July 2013.

Using data from the 2009/10 NS-CSHCN and 2011/12 NSCH, the Data Resource Center developed this three-page data brief on children with special health care needs (CSHCN) with Autism Spectrum Disorders (ASD). The brief describes characteristics of CSHCN who currently experience an ASD, the impact on families of having a CSHCN with ASD, as well as how health system performance and contextual factors from the home, school and neighborhood environments may affect CSHCN with ASD.

Summary of Data on CSHCN with ASD by Race or Ethnicity. Data Resource Center, 2012.

Created by the Data Resource Center, these data summary tables come from the 2009/2010 NS-CSHCN and explore racial or ethnic disparities among children with special health care needs with Autism Spectrum Disorder. 

Impact of Health Insurance Type and Adequacy on Child Health, Family, and System of Care for CSHCN with ASD. Data Resource Center, August 2012.

The Data Resource Center used data from the 2009/10 NS-CSHCN to create these tables exploring how insurance impacts children and families experiencing special health care needs and Autism Spectrum Disorder. 

Diagnostic History and Treatment of School-aged Children with Autism Spectrum Disorder and Special Health Care Needs. Beverly A. Pringle, Ph.D.; Lisa J. Colpe, Ph.D., M.P.H.; Stephen J. Blumberg, Ph.D.; Rosa M. Avila, M.S.P.H.; and Michael D. Kogan, Ph.D. May 2012.

This data brief, utilizing Pathways data, describes school-aged CSHCN with ASD, looking at when they were reported to be first identified as having ASD, who made the identification, and the services and medications they currently receive to meet their developmental needs.

News articles and blog posts

Delayed Autism Diagnosis Common in Primary Care
April 15, 2015 

Parents with autistic children were more likely to receive a passive, rather than a proactive response from a provider when raising concerns about their children's development compared with parents whose children exhibited signs of developmental delay, according to data from a large survey.

Details about the potentially “recovered” autistic kids in the National Survey of Children’s Health
December 27, 2013

Blogger Matt Carey discusses the nuances behind a small proportion of children in the National Survey of Children’s Health that were indicated to have “recovered” from Autism Spectrum Disorder. However, Carey suggests that parent’s mostly only report a change in ASD status if the child never actually had ASD to begin with, which he uses to reinforce his argument against vaccine-ASD fear mongering.

More than half of school-aged kids with autism diagnosed at 5 or older
May 24, 2012

Although the American Academy of Pediatrics recommends pediatricians screen children for Autism Spectrum Disorder at 18 months, new government research shows more work has to be done. More than half of school-aged kids with Autism Spectrum Disorder in the U.S. were 5-years-old or older by the time they were diagnosed. The new study is part of the Centers for Disease Control and Prevention's (CDC) 2011 Survey of Pathways to Diagnosis and Services.

Peer-reviewed articles

Diagnostic experience

Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey
Zablotsky B, Black LI, Maenner MJ, Schieve LA, Blumberg SJ. National Health Statistics Report. November 2015.

The developmental disabilities questions in the 2014 National Health Interview Survey (NHIS) were changed from previous years, including question reordering and a new approach to asking about autism spectrum disorder (ASD). The results showed a significant increase in the estimated prevalence of ASD to 2.24% (2014 data) from 1.25% (2011-2013 data).

Diagnosis Lost: Differences Between Children Who Had and Who Currently Have an Autism Spectrum Disorder Diagnosis
Blumberg SJ, Zablotsky B, Avila RM, Colpe LJ, Pringle BA, Kogan MD. Autism: International Journal of Research and Practice. October 2015

This study uses the Survey of Pathways to Diagnosis and Services to compare currently diagnosed and previously diagnosed children aged 6-17 years. Retrospective data was collected from parents to determine differences and similarities in functioning between the previously diagnosed and control groups, which may be due to loss of diagnosis.

Age at Autism Spectrum Disorder (ASD) Diagnosis by Race, Ethnicity, and Primary Household Language Among Children with Special Health Care Needs, United States, 2009-2010
Jo K, Schieve LA, Rice CE, Yeargin-Allsopp M, Tian LH, Blumberg SJ, Kogan MD, Boyle CA. Journal of Maternal and Child Health. August 2015.

Using the 2009-2010 National Survey of Children with Special Health Care Needs, researchers examined the prevalence of diagnosed Autism Spectrum Disorder (ASD) and age at diagnosis according to child's race/ethnicity and primary household language. Age of diagnosis was found to vary significantly across various race and severity strata.

Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis
Zuckerman, KE, Lindly, OJ, Sinche, BK. Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis. June 2015.

Objectives of the study were to assess differences between the child’s age at first parental concern and age at first parental discussion of concerns with a health care provider among children with Autism Spectrum Disorder (ASD) vs those with intellectual disability/developmental delay (ID/DD), and to determine if provider response to parental concerns is associated with delays in ASD diagnosis.

Parental Report of the Diagnostic Process and Outcome
Oswald D, Haworth S, Mackenzie B, Willis J. Focus on Autism and Other Developmental Disabilities. June 2015.

Parents report that the process of getting an Autism Spectrum Disorder (ASD) diagnosis is arduous, lengthy, and fraught with difficulties. This analysis of the Pathways survey data set examined the experiences of parents who said, at the time of the survey, that their child currently had ASD compared with parents who said, at the time of the survey, that their child currently had some other developmental disability.

Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. children: 2007 to 2011-2012
Blumberg SJ, Bramlett MD, Kogan MD, Schieve LA, Jones JR, Lu MC. National Health Statistics Report. March 2013.

This report presents data on the prevalence of diagnosed autism spectrum disorder (ASD) as reported by parents of school-aged children (ages 6-17 years) in 2011-2012.

Parental beliefs and perceptions

Parent Health Beliefs, Social Determinants of Health, and Child Health Services Utilization Among US School-age Children With Autism
Zuckerman, Katherine E, Lindly, Olivia J, Sinche, Brianna , Nicolaidis, Christina. Journal of Developmental & Behavioral Pediatrics. April 2015.

Goals of the study were to (1) examine variation of parents’ beliefs about ASD prognosis and treatment according to social determinants of health and (2) assess whether this variation was associated with variable health services utilization, among parents of children with special health care needs (CSHCN) and ASD.

Factors Associated with Parental Ratings of Condition Severity for Children with Autism Spectrum Disorder
Zablotsky, Benjamin, Bramlett, Mathew, Blumberg, Stephen J. Disability and Health Journal. March 2015

This study examines factors associated with a parent's judgment of ASD severity by identifying child and household characteristics that were associated with a parent's severity rating of his/her child's ASD, including child ASD symptomatology, child impact, and family impact.

Parent perceptions of autism severity: exploring the social ecological context
Hock R, Ahmedani BK. Disabil Health J. October 2012.

The goal of the study is to: 1) compare the social ecological contexts of parents of children with ASD and parents of non-autistic children, and 2) explore the social ecological influences on parents' perception of their child's ASD severity.

Comorbidity with other conditions

Co-occurrence of Autism and Asthma in a Nationally-Representative Sample of Children in the United States
Kotey, S, Ertel, K, Whitcomb, B. Journal of Autism Developmental Disorders. December 2014.

Researchers performed a cross-sectional study to examine the association between Autism Spectrum Disorder and asthma incidence in children using the 2007 National Survey of Children's Health dataset.

Sex Differences in Co-occurring Conditions in Children with Autism Spectrum Disorders
Stacy, ME, Zablotsky, B, Yarger HA, Zimmerman, A, Makia, B, Lee, LC. November 2014.

Researchers investigated differences in co-occurring diagnoses made in females compared to males with Autism Spectrum Disorders in children living in the United States with a current ASD diagnosis identified via caregiver-reported data from the 2007 National Survey of Children's Health.

Prevalence and impact of unhealthy weight in a national sample of US adolescents with autism and other learning and behavioral disabilities
Phillips, KL, Schieve, LA, Visser S, Boulet, S, Sharma, AJ, Kogan, MD, Boyle, CA, Yeargin-Allsopp, M. Journal of Maternal and Child Health. October 2014.

The potential correlation between ASD and other developmental disorders (DDs) and unhealthy weight. Researchers reported that both obesity and underweight prevalence were higher among children with a DD, and obesity prevalence was highest in children with ASD, emphasizing the need for obesity prevention and management in the quest to improve ASD outcomes.

Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006-2010
Schieve, LA, Gonzales, V, Boulet, SL, Visser, SN, Rice, CE, Van Naarden Braun, K, Boyle, CA. Research in Developmental Disabilities. March-April 2012

Associations between developmental disorder (DD) diagnosis and the prevalence of numerous other medical conditions were examined, indicating that prevalence estimates for most medical conditions examined (asthma, digestion problems, seizures) were markedly higher in children with DDs. Children with DDs also had higher estimates for health care use, impact, and unmet needs measures.

Co-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders
Close, HA, Lee, LC, Kaufmann, CN, Zimmerman, AW. February 2012.

This study aims to investigate descriptive characteristics and co-occurring neurodevelopmental and psychiatric conditions in young children and adolescents with a current and consistent or past - but not current - (PBNC) diagnosis of Autism Spectrum Disorder (ASD) and how such characteristics and conditions may engender a change in diagnosis of an ASD.

Breastfeeding

Breastfeeding and Autism Spectrum Disorder in the National Survey of Children’s Health
Husk, JS, Keim, SA. The Research Institute at Nationwide Children’s Hospital. July 2015.

A large sample of parents with a child ages 2-5 years were queried about whether their child is currently diagnosed with ASD and about their child's breastfeeding history. Across models, ASD diagnosis was found to be unassociated with any measure of breastfeeding history.

Safety

Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability
Jo H, Schieve LA, Rice CE, Yeargin-Allsopp M, Tian LH, Blumberg SJ, Kogan MD, Boyle CA. J Pediatr. May 2016.

The objective of the study was to characterize wandering among children with (ASD) and intellectual disability. The study found that wandering among children with ASD, regardless if they have an intellectual disability, is relatively common

ASD’s economic impact on families

Financial and employment impact of intellectual disability on families of children with autism.
Saunders, BS, Tilford, JM, Fussell, JJ, Schulz, EG, Casey, PH, Kuo, DZ. Family, Systems, and Health. March 2015

The objective of this study was to describe and quantify the additional impact on families of children with an intellectual disability (ID) in addition to ASD. The study concluded that ID ASD comorbidity may be associated with a greater negative impact on family financial and employment burden.

Economic Burden of Childhood Autism Spectrum Disorders
Lavelle, Tara A, Weinstein, Milton C, Newhouse, Joseph P, Munir, Kerim, Kuhlthau, Karen A, Prosser, Lisa A. February 2014.

Researchers examined data from the Medical Expenditure Panel Survey linked to the National Health Interview Survey to estimate associations between ASD diagnosis and service use and cost outcomes. They conclude that the cost burden associated with ASD is substantial and pervades across multiple sectors, most notably in education.

Health policy

The impact of the medical home on access to care for children with autism spectrum disorders.
Cheak-Zamora NC, Farmer JE. Journal of Autism and Developmental Disorders. March 2015.

Using parent-reported 2009-2010 NS-CSHCN data researchers found that children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home – this relationship was found to be statistically significant across other condition specific variables. This suggests that the medical home concept is an important new mechanism in enhancing outcomes of families with ASD.

Services

Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder
Magaña S, Parish SL, Son E. J Intellect Disabil Res. May 2016.

The study found that Latino children with autism spectrum disorder (ASD) who had severe limitations received fewer specialty autism-related services than White children with similarly severe conditions.

Variation in Educational Services Receipt Among US Children With Developmental Conditions
Lindly OJ, Sinche BK, Zuckerman KE. Acad Pediatr. October 2015.

The objective of the study was to examine the relationship between ease of access to needed community-based services and educational services receipt by sociodemographic and need factors among a nationally representative sample of children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID).