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Sociodemographic Disparities in Intervention Service Utilization in Families of Children with Autism Spectrum Disorder

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Cathina T Nguyen
Cathina T Nguyen
Cathina T Nguyen
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Paula Krakowiak at California Department of Public Health, Sacramento, CA
Paula Krakowiak
  • California Department of Public Health, Sacramento, CA
Robin L Hansen at University of California, Davis
Robin L Hansen
Irva Hertz-Picciotto at University of California, Davis
Irva Hertz-Picciotto
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Abstract

This study investigates whether sociodemographic factors are associated with utilization of intervention services for children with autism spectrum disorder (ASD) enrolled in the Childhood Autism Risks from Genetics and the Environment Study. Maternal ethnicity, insurance status, and education for 696 families of children with ASD were available. Children of Black mothers entered intervention earlier compared to White mothers (2 vs. 2.6 years; p = 0.001). Having public insurance was associated with receiving <15 h/week of individual services, while having a Bachelor degree was associated with receiving <15 h/week of classroom-based services. These differences suggest that SES may be a factor in utilization of services. Efforts should be made to ensure that interventions offered are culturally and linguistically accessible.
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ORIGINAL PAPER
Electronic Supplementary Material The online version of this
article (doi:10.1007/s10803-016-2913-3) contains supplementary
material, which is available to authorized users.
Kathleen Angkustsiri
kangkustsiri@ucdavis.edu
1 Department of Public Health Sciences, School of Medicine,
University of California Davis, Davis, CA 95817, USA
2 Department of Pediatrics, School of Medicine, University of
California Davis, Davis, CA, USA
3 MIND Institute, University of California Davis, 2825 50th
Street, Sacramento, CA 95817, USA
4 Present address: School of Nursing, University of California
San Francisco, San Francisco, CA, USA
© Springer Science+Business Media New York 2016
Sociodemographic Disparities in Intervention Service Utilization
in Families of Children with Autism Spectrum Disorder
Cathina T. Nguyen1,4 · Paula Krakowiak1,3 · Robin Hansen2,3 ·
Irva Hertz-Picciotto1,3 · Kathleen Angkustsiri2,3
Introduction
Autism spectrum disorder (ASD) is a developmental dis-
order that is reliably diagnosed in early childhood. ASD
is characterized by communication problems, social inter-
action impairments, and restricted, repetitive patterns of
behavior and interests (American Psychiatric Association
2013). In the past 10 years, ASD has become a growing
public health topic as the prevalence of children with ASD
has increased from 1 in 150 in 2000 to 1 in 68 (Centers for
Disease Control and Prevention 2014) just 10 years later.
ASD has a heterogeneous etiology, and current research
has not yet identied a specic biological treatment for
the core symptoms of ASD. At present, the evidence-based
treatments for core ASD symptoms in young children sup-
ported by research are early intensive behavioral interven-
tion (EIBI) (Remington et al. 2007) programs that are based
on the principles of Applied Behavior Analysis (ABA), such
as Discrete Trial Teaching (Smith 2001), Pivotal Response
Treatment (Smith and Iadarola 2015), the Early Start Den-
ver Model (Dawson et al. 2010; Estes et al. 2015), and oth-
ers (Schreibman and Stahmer 2014).
Children with ASD who are enrolled earlier in intensive
early interventions have better outcomes, which include
improved daily living and cognitive skills (Peters-Scheffer et
al. 2011; Perry et al. 2011; Dawson et al. 2010). With such
promising data to support the effectiveness of early interven-
tion services, it is troubling that an estimated 9 in 10 children
with ASD are not fully utilizing behavioral health services
even with the existence of the Individuals with Disabilities
Education Act (IDEA) (Ruble et al. 2005). IDEA mandates
the provision of intervention services to children with disabil-
ities, including both general interventions, such as speech and
occupational therapy, as well as autism-specic therapies,
such as EIBI and emerging interventions such as Naturalistic
Abstract This study investigates whether sociodemo-
graphic factors are associated with utilization of interven-
tion services for children with autism spectrum disorder
(ASD) enrolled in the Childhood Autism Risks from
Genetics and the Environment Study. Maternal ethnicity,
insurance status, and education for 696 families of chil-
dren with ASD were available. Children of Black mothers
entered intervention earlier compared to White mothers
(2 vs. 2.6 years; p = 0.001). Having public insurance was
associated with receiving <15 h/week of individual ser-
vices, while having a Bachelor degree was associated with
receiving <15 h/week of classroom-based services. These
differences suggest that SES may be a factor in utilization
of services. Efforts should be made to ensure that interven-
tions offered are culturally and linguistically accessible.
Keywords Autism spectrum disorder ·
Intervention services · Utilization · Family characteristics
1 3
J Autism Dev Disord (2016) 46:3729–3738
DOI 10.1007/s10803-016-2913-3
Published online: 17 September 2016
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... In addition to race and ethnicity, socioeconomic factors (which include parent education, family income, and insurance type) have been identified as contributors to disparities, including access to, knowledge about, and use of services (Nguyen et al., 2016;Smith et al., 2020;Thomas et al., 2007). Willicutt's (2012) meta-analysis indicated that several studies found low SES to be associated with higher likelihood of ADHD identification, though other included studies suggested no socioeconomic differences. ...
... Almost 30% of studies in our review did not report anything about participants' SES. There are quite possibly differences not only in access to services but also to delays in identification, and lower service acceptability, related to SES (Nguyen et al., 2016;Smith et al., 2020), but this is impossible to ascertain when SES is often not reported in published studies (Cénat et al., 2022). Also, how SES indicators are selected and/or reported was quite varied in our review, creating difficulty in generalizability or even comparisons. ...
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... 19 Large gaps in access to autism services, especially behavioral interventions, have been documented worldwide, including in high-income countries, such as the United States, Canada, and the United Kingdom. [20][21][22][23][24] Studies from other Arab nations similarly point to significant disparities; for example, the mean age at first service access is 3.3 years in Saudi Arabia 25 compared to 2.2 years in the United States. 26 Our data are consistent with the above research and indicate that services are rarely delivered by autism-specialized centers. ...
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