ORIGINAL

ARTICLES
Participation in Part C Early Intervention: One Key to an Earlier Diagnosis of
Autism Spectrum Disorder?
Marissa E. Yingling, PhD, MSW

Objective To determine whether participation in a state early intervention program is associated with reduction in
the age of diagnosis of autism spectrum disorder (ASD).
Study design State agency, Medicaid, and Census data were integrated for children with ASD enrolled in a
Medicaid waiver between February 2007 and March 2015 (N = 1613). Ordinary least squares regression was
used to estimate the relationship between participation in a state early intervention program and their age of diag-
nosis of ASD.
Results The model explained 34% of variation in age of diagnosis (F[17,1595] = 49.20, P < .0001, adj R2 = 0.34).
After adjustment for key variables, compared with children who did not participate in early intervention, children who
did participate were diagnosed 2 years earlier (b =
23.97, P < .0001).
Conclusions Although conducted in only 1 state, this study suggests that participation in early intervention pro-
grams may be instrumental in earlier diagnosis of ASD. These findings underscore the importance of identifying chil-
dren who qualify for early intervention programs, the value of encouraging childhood professionals (eg, early care
providers and educators) to refer given documented barriers to pediatrician referral, and the need for research that
identifies the mechanisms by which programs may promote earlier diagnosis (eg, service coordination, parent
support). (J Pediatr 2019;-:1-6).

See editorial, p -

O
ver time, research has indicated that the age of autism spectrum disorder (ASD) diagnosis has declined.1 Still, the
Centers for Disease Control and Prevention (CDC) reports that the median age of earliest known diagnosis has
remained similar between 2000 and 2014.2 For 85% of children with ASD, developmental concerns are documented
by 36 months of age, but only 42% receive a comprehensive evaluation by this time.2 Earlier intervention results in better
outcomes and earlier diagnosis is critical.3-9 There are ongoing efforts to reduce the age of diagnosis, such as embedding
diagnostic consultation and support clinics in primary care offices.10 Yet before system restructuring undergoes rigorous
testing for clinical and financial feasibility, and where such practices may never become standard (eg, rural communities),
an investigation into modifiable factors within the existing system is worthwhile.
Parents report varying experiences with providers on their “diagnostic odyssey.”11 Although the average delay from initial
conversation between parents and providers about ASD and diagnosis is 2.7 years, parents who convey concerns and receive a
proactive response (ie, provider refers child to a specialist, speaks with child’s school about concerns, and/or completes
developmental testing) receive a diagnosis for their child earlier than those who receive reassuring or passive responses.12
Relevance of related factors, such as interaction with the service system before diagnosis, remains unclear.
State early intervention programs are a common source of services for children younger than 3 years,13 but only 1 study explored
their role in age of diagnosis of ASD. Although children referred for diagnosis by programs were diagnosed earlier than those
referred by a primary care provider (PCP), the small sample size (N = 45) significantly limits findings.14 Thus, using a large, unique
sample of children enrolled in a state Medicaid waiver, the author sought, in the current study, to determine whether children’s
participation in a state early intervention program is associated with reduction in the age of diagnosis of ASD. Evidence of such an
association may underscore a need for health and early care and education providers to improve referral practices.

Methods
The author integrated 3 data sources. State administrative data accessed via the South Carolina Department of Disabilities and
Special Needs included children with ASD diagnosed by age 8 years enrolled in a

ASD Autism spectrum disorder From the Kent School of Social Work, University of
Louisville, Louisville, KY
CDC Centers for Disease Control and Prevention
The author declares no conflicts of interest.
PCP Primary care provider
RUCA Rural-urban commuting areas 0022-3476/$ - see front matter. ª 2019 Elsevier Inc. All rights reserved.
https://doi.org/10.1016/j.jpeds.2019.06.034

1
THE JOURNAL OF PEDIATRICS  www.jpeds.com
Medicaid waiver between February 2007 and March 2015.
The Office of Revenue and Fiscal Affairs provided census
tract and Medicaid claims data. Details about the waiver
and data integration have been published elsewhere.15 Chil-
dren were included in the study if assigned a census-tract
ID to the home address available in administrative data
and excluded if they belonged to a cohort of children who
benefited from a policy implemented in 2012 that enabled
them to bypass the waiver waitlist.16 For families with more
than 1 child in the waiver, 1 child was selected randomly. A
university institutional review board approved this study.
Measures
Age of diagnosis is the outcome of interest and is measured in
months. The primary independent variable, early interven-
tion participation, is a set of dummy variables indicated by
the date of early intervention enrollment (month, day, and
year) in the child’s electronic file (never participated in early
intervention, enrolled in early intervention before the date of
diagnosis of ASD, enrolled in early intervention on or after
the date of diagnosis of ASD).
Although the focus is on children who participated in early
intervention before diagnosis, children who never enrolled in
early intervention may be qualitatively different from those
who participated in early intervention after diagnosis. For
instance, children may have been referred for diagnostic eval-
uation before early intervention enrollment, and due to long
wait times for evaluations,18 entered early intervention before
receiving a diagnosis. Thus, they are accounted for in this
measure. They are not, however, the focus of results.
Control variables are based on evidence that child sex,
race
ethnicity, and clinical characteristics, family socioeco-
nomic status, and time period are associated with age of
ASD diagnosis.1 Sex is a binary variable (1 = female,
0 = male) and child race
ethnicity includes the categories
non-Hispanic white, non-Hispanic black, Hispanic, non-
Hispanic other, and unknown. Administrative data and
Medicaid claims data include the category unknown, His-
panic includes children identified as Hispanic white and His-
panic black, as the latter category included too few children
to analyze separately, and non-Hispanic other is derived
from a range of categories too small to analyze (ie, Asian, Ha-
waiian/Pacific Islander, and American Indian). Clinical char-
acteristics include diagnosis of intellectual disability, an
indicator of cognitive ability (1 = yes, 0 = no), and Diagnostic
and Statistical Manual of Mental Disorders, 4th Edition, diag-
nosis (1 = Asperger disorder, Rett syndrome, pervasive devel-
opmental disorder not otherwise specified, 0 = autistic
disorder and childhood disintegrative disorder, as they are
most similar, per the Diagnostic and Statistical Manual of
Mental Disorders, 4th Edition).19 The payment category billed
by waiver providers, most often determined by family in-
come, is a proxy for family socioeconomic status. Sources
included payment under the Tax Equity and Fiscal Responsi-
bility Act, which assists families with incomes too high to
qualify for Medicaid, and Supplemental Security Income,
which assists low-income families, or “other” source. The
2 Yingling
Volume -  - 2019
variable year of diagnosis (1 = post-2007; 0 = pre-2007) con-
trols for period effects.
Geographic variables were selected based on research that
suggests that racial composition, socioeconomics, and ur-
banicity of the area in which a child resides are associated
with age of diagnosis.1 Racial composition is the percent of
white residents in the census tract (grand-mean centered).
Neighborhood poverty is a composite variable calculated as
a z score computed from the sample’s census-tract grand
mean of the following variables commonly used to measure
neighborhood poverty20: (1) single-parent, female-headed
households; (2) percent of residents below the federal poverty
level; (3) residents who receive cash assistance; (4) residents
enrolled in Supplemental Nutrition Assistance Program;
(5) residents who receive Supplemental Security Income;
and (6) residents who are unemployed. Also a composite var-
iable, neighborhood affluence, commonly used to measure
neighborhood quality, is a z score computed from the sam-
ple’s census tract grand mean of variables often used to mea-
sure affluence20: (1) median household income, (2) percent
of residents with professional/managerial employment, and
(3) percent of residents with a bachelor’s degree or higher.
Poverty and affluence were calculated by taking the average
of the z scores for each of the indicators listed above for
each composite variable. Rural-urban commuting areas
(RUCA) informed the variable urbanicity, with the categories
urban, suburban, and rural. RUCA codes are at the level of
census tracts and use “measures of population density,
urbanization, and daily commuting.”21 The RUCA codes
used in this study are the most recent available and are based
on the 2010 decennial census and the 2006-10 American
Community Survey.
Statistical Analyses
Of the 1799 children who met inclusion criteria, 129 had no
census tract ID; 44 children were missing data on other var-
iables. On average, children were missing 0.31 items. There
were no strong correlations among missingness. Missing
data across all children and all variables were 2%. When
missing data are <10%, listwise deletion may not cause
any more bias than imputation.22-24 After analyses were
conducted with the remaining 1626 children, by using stu-
dentized residuals and Cook D, 13 influential outliers of
concern were identified. These outliers were removed and
the final analysis included 1613 children. Differences in re-
sults are discussed.
The author used SAS 9.4 (SAS Institute Inc, Cary, North
Carolina) to conduct all analyses, estimating one ordinary
least squares regression model using PROC REG. To assess
model fit, adjusted R2 and assumptions associated with ordi-
nary least squares regression were examined. Residuals from
the main effects models appeared to be normally distributed
(Shapiro
Wilk P > .001). The Durbin
Watson test indi-
cated an absence of first-order autocorrelation and therefore,
no violation of independence. Despite one instance of mod-
erate (poverty and racial composition) and one instance
of strong (affluence and poverty) zero-order correlations,
- 2019 ORIGINAL ARTICLES

all tolerance values exceeded 0.20 (0.30-0.99), providing no
evidence of multicollinearity issues.25
Results
Table I includes descriptive statistics for the 1613 children in
the sample. There were more male than female subjects, most
children had a diagnosis of intellectual disability (64.9%),
and a minority of children had a diagnosis of Asperger,
Rett syndrome, and pervasive developmental disorder not
otherwise specified (18.9%). More than one-third of
children identified as white (41.2%), and more than two-
thirds lived in an urban neighborhood (68.9%). The
average age of diagnosis was just older than 4 years of age.
Among children who participated in the state early
intervention program, 60.5% participated before their
diagnosis date, 9.5% participated after their diagnosis date,
and 30.1% never participated.
Table II presents parameter estimates for the ordinary
least squares regression model, which explains 34% of
the variability in age of diagnosis (F[17, 1595] = 49.20,
P < .0001, adj R2 = 0.34). After controlling for
sociodemographic, clinical, and geographic characteristics,
compared with children who did not participate in
the state’s early intervention program, children who
participated before the date of diagnosis were diagnosed
23.8 months earlier (b =
23.97, P < .0001). The
semipartial correlation value was 0.23. Results of the
sensitivity analysis that included 13 children with
influential outliers on the outcome were similar to the
main analysis, with no change in the significance of
predictors and minimal decline in model fit (F[17,
1608] = 45.13, P < .0001, adj R2 = 0.32).
Discussion
Using a large sample of children with ASD in a Southeastern
state, this study suggests that participation in a state early
intervention program enables earlier diagnosis, after control-
ling for clinical, sociodemographic, and geographic charac-
teristics, as well as period effects. Compared with children
who did not participate, children who participated before
their date of diagnosis were diagnosed 2 years earlier. In a
cross-sectional record review of children evaluated at a

Table I. Descriptive statistics for age of ASD diagnosis and control variables (N = 1613)
Variables % (Mean) SD Sk Ku
Age of ASD diagnosis* (48.28) 20.56 1.12 0.92
Early intervention
No early intervention 30.07



Diagnosis after early intervention† 60.45



Diagnosis before early intervention 9.45



Period characteristic
Year of diagnosis
Diagnosed post-2007 64.84



Sociodemographic characteristics
Race-ethnicity
Non-Hispanic white 41.23



Non-Hispanic black 18.72



Hispanic 4.96



Non-Hispanic other 3.29



Unknown 31.80



Family socioeconomic status‡
TEFRA 40.73



SSI 32.80



Other 26.47



Female 17.23



Clinical characteristics
DSM-IV diagnosis§ 18.91



Intellectual disability 64.85



Geographic characteristics{
% White (70.09) 20.97
1.05 0.59
Poverty{ (0) 0.73 1.19 2.07
Affluence{ (0) 0.94 0.57
0.28
Urban 68.88



Suburban 26.78



Rural 4.34

DSM-IV, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition; Sk, Skewness; Ku, Kurtosis; TEFRA, Tax Equity and Fiscal Responsibility Act; SSI, Supplemental Security Income.
*Age of diagnosis measured in months.
†For 6 children, date of ASD diagnosis and date of early intervention enrollment were the same.
‡The payment category billed by waiver providers, most often determined by family income, is a proxy for family socioeconomic status.
§DSM-IV diagnosis; 1 = Asperger disorder, Rett syndrome, pervasive developmental disorder not otherwise specified, 0 = autistic disorder and childhood disintegrative disorder, as they are most
similar, per the DSM-IV.
{Poverty and affluence are z scores, so the mean will always be zero. The following values are the minimum and maximum values of poverty and affluence, respectively:
1.14, 4.02 and
1.99,
3.39.

Participation in Part C Early Intervention: One Key to an Earlier Diagnosis of Autism Spectrum Disorder? 3
THE JOURNAL OF PEDIATRICS  www.jpeds.com Volume -

Table II. Estimates from regression model for age of ASD diagnosis (n = 1613)
Variables b SE P Standardized estimate Semipartial correlation
Intercept (67.52) 1.35 <.0001


Early intervention
Diagnosed after early intervention*
24.88 1.60 <.0001
0.35 0.10
Diagnosed before early intervention*
23.97 1.02 <.0001
0.57 0.23
Period characteristic
Year of diagnosis 5.84 0.92 <.0001 0.14 0.02
Sociodemographic characteristics
Race
ethnicity
Non-Hispanic black 1.87 1.27 .15 0.04 0.00
Hispanic
1.97 2.02 .33
0.02 0.00
Non-Hispanic other
0.60 2.41 .80
0.01 0.00
Unknown
0.20 1.10 .86
0.00 0.00
Family socioeconomic status†
SSI*
5.84 1.08 <.0001
0.13 0.01
Other 1.21 1.12 .27 0.03 0.00
Female 1.00 1.11 .37 0.02 0.00
Clinical characteristics
DSM-IV diagnosis*
2.93 1.11 .008
0.06 0.00
Intellectual disability
0.34 0.91 .71 0.01 0.00
Geographic characteristics
% White
0.03 0.03 .25
0.03 0.00
Poverty*
2.33 1.04 .02
0.08 0.00
Affluence
0.39 0.71 .58
0.02 0.00
Suburban 0.63 0.97 .37 0.52 0.00
Rural
1.90 2.12 .52
0.02 0.00
Model fit
R2 0.3440
adj R2 0.3370

*Age of ASD diagnosis measured in months.

†The payment category billed by waiver providers, most often determined by family income, is a proxy for family socioeconomic status: TEFRA and SSI. Bivariate analyses revealed a strong sig-
nificant negative correlation between neighborhood poverty and affluence and a moderate significant negative correlation between neighborhood poverty and racial composition. A sensitivity analysis
with early intervention measured dichotomously (1 = children who receive early intervention before diagnosis; 0 = all other children) did not result in a better fitting model (adj R2 23.7, coefficient for
early intervention =
17.28).

tertiary referral center in a Midwestern state (N = 45), re-
searchers found that compared with children referred by a
PCP, children referred by an early intervention program
experienced earlier diagnosis.14 In the current study, referral
source is unknown. Taken together, however, these 2 studies
suggest that children with ASD who participate in early
intervention programs are identified earlier than children
who do not.
There may be several reasons why children who participate
in early intervention programs are diagnosed earlier. Upon
referral to programs, licensed professionals trained in recog-
nizing and diagnosing developmental delays and disorders
assess children. They have the luxury of observing and inter-
acting with children much longer than do PCPs during well-
child visits.26 Some early intervention programs even include
specialized evaluation protocols for children suspected of
ASD,27 which may promote earlier referral for evaluation
and subsequent diagnosis.28 Indeed, although the American
Academy of Pediatrics instructs pediatricians to simulta-
neously refer for evaluation and to early intervention after
positive screen or surveillance of a child,29 screening and
referral practices vary significantly.28,30 Pediatricians point
to time, staffing, and financial constraints and cite barriers
such as budget restrictions on programs and the limited ser-
vices they provide compared with recommendations for
intensive treatment.31 Some mistakenly believe a diagnosis
is required to refer to programs.32 Varied practices also
4 Yingling
may reflect wide-ranging confidence in ASD detection
among pediatricians, which may be greater in early
intervention professionals. The CDC has increased
confidence among pediatricians in discussing child develop-
ment with parents and knowledge of referral resources and
treatment options as part of its health education campaign
“Learn the Signs. Act Early.”33 Still, research published since
the campaign launched in 2004 indicates an ongoing need to
address confidence in referral.18,31 It will be important to
evaluate the role of ongoing initiatives such as Help Me
Grow in potentially facilitating earlier ASD diagnosis by help-
ing healthcare providers connect families to developmental
screenings and community resources.34 Novel approaches
to developmental screening, such as using telephone-based
2-1-1 services, are promising for connecting children to
early intervention programs.35
Findings also highlight the value of targeting other child-
hood professionals to refer to early intervention programs.
Of special note are early care and education providers who
work with infants and toddlers in childcare centers and pro-
grams such as Early Head Start. As part of “Learn the Signs.
Act Early,” the CDC targets these professionals by providing
free instructional materials on developmental milestones and
connecting parents to early intervention,36 as well as a free,
online professional development course, Watch Me! Cele-
brating Milestones and Sharing Concerns.37 However, the ma-
terials provided encourage these professionals to refer to
- 2019
healthcare providers, not to early intervention programs.
Empowering early care and education providers to refer to
programs may be prudent.
Importantly, professional referral alone does not connect
children to early intervention. Some parents may not experi-
ence or express developmental concerns early enough for
referral. The “Learn the Signs. Act Early” campaign includes
educational outreach to parents on developmental mile-
stones, and materials have improved over time.38 Although
research indicates that the campaign has increased awareness
of milestones,33 the impact of awareness on raising concerns
with health and educational professionals and entry into
early intervention are uncertain.39 When professional con-
cerns prompt referral or when parents express concerns
and are referred, follow-through may not occur. In addition
to balancing busy schedules and preferring to rely on social
networks to make decisions, parents may receive limited in-
formation to facilitate help-seeking and be challenged by a
lack of health literacy.40,41 Parents also may leave providers’
offices lacking clarity on the purpose and parameters of
early intervention programs. Some parents may equate early
intervention with child protective services and fear losing
their children as well as being judged about their home and
parenting.42 Both are potential barriers unaddressed in
CDC campaign materials.
Future research is required to identify mechanisms
within early intervention programs that may facilitate
earlier ASD diagnosis. It is possible that coordinators offer
parents validation that prompts action or advice and assis-
tance in navigating the diagnostic process, such as identi-
fying specialists who can diagnose ASD and scheduling
appointments. Interventionists (eg, speech
language and
occupational therapists) also may offer support. To the con-
trary, despite barriers to parent follow-through, assistance
in the primary care setting is not a widespread practice.28,43
Moreover, results support the conclusion offered in a recent
systematic review that simultaneous research on and imple-
mentation of robust tracking systems to monitor children
between surveillance and enrollment in early intervention
are necessary.44
Several factors limit the interpretation of study findings.
First, the current study includes children with ASD in 1 state
who enrolled in a Medicaid waiver program. Not only does
this limit generalizability to other states, but it also limits
conclusions that can be drawn within the state, as children
who may have been diagnosed with ASD but never partici-
pated in the Medicaid waiver are not included. In addition,
data available did not include who expressed initial concern
(ie, parent, PCP, educator) or key dates before diagnosis and
early intervention enrollment, such as the date of first ex-
pressed concern and date of referral for evaluation and/or
early intervention enrollment. It is unknown, therefore,
whether children were referred for diagnostic evaluation
before early intervention enrollment, and due to long wait
times for evaluations,17 children entered early intervention
before receiving a diagnosis. In the study sample, 6 children
enrolled in early intervention on the same date as their diag-
Participation in Part C Early Intervention: One Key to an Earlier Diagnosis of Autism Spectrum Disorder?
ORIGINAL ARTICLES
nosis, signifying this possibility. Also unknown is the type of
provider (ie, PCP, specialist, educator, early intervention
provider) that ultimately referred the child for diagnosis. In
addition, the current study does not capture other possible
explanations for early diagnosis, such as clinical characteris-
tics that may have prompted referral to early intervention
before ASD was suspected. For instance, although parents
tend to notice and raise concerns earlier when children are
not talking, which leads to earlier diagnosis,1,45,46 the current
study includes no measure that captures speech-language
skills.
As early as infancy, children at risk of ASD and their parents
may benefit from early intervention47; earlier treatment entry is
associated with better outcomes3,4,8,9 and greater treatment
use.48 Although the mechanisms by which it may facilitate
earlier diagnosis remain unidentified, the current study
indicates that early intervention participation is an associated
factor. n
The author acknowledges the South Carolina Department of Disabil-
ities and Special Needs for its support of this work. The views and opin-
ions expressed in this article are those of the author and do not
necessarily reflect the official policy or position of the agency.
Submitted for publication Feb 20, 2019; last revision received Jun 8, 2019;
accepted Jun 11, 2019.
Reprint requests: Marissa E. Yingling, PhD, MSW, 2217 S 3rd St, Oppenheimer
Hall, Kent School of Social Work, University of Louisville, Louisville, KY 40208.
E-mail: marissa.yingling@louisville.edu
Data Statement
Data sharing statement available at www.jpeds.com.
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