648288

research-article2016
CPJXXX10.1177/0009922816648288Clinical PediatricsMazurek et al

Original Article
Clinical Pediatrics

ECHO Autism: A New Model for 1­–10

© The Author(s) 2016
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DOI: 10.1177/0009922816648288

in Best-Practice Care for Children cpj.sagepub.com

With Autism

Micah O. Mazurek, PhD1, Rachel Brown, MBBS1,

Alicia Curran, BS1, and Kristin Sohl, MD1

Abstract
Children with autism spectrum disorder (ASD) have complex medical problems, yet they are at high risk for unmet
health care needs. Primary care providers are perfectly positioned to meet these needs; however, they often
lack training in ASD. This pilot project developed and tested a new model for training primary care providers in
best-practice care for ASD using the Extension for Community Healthcare Outcomes (ECHO) framework. The
6-month ECHO Autism pilot project consisted of 12 biweekly clinics focused on screening and identification of
ASD symptoms and management of medical and psychiatric comorbidities. Participants completed measures of
practice behavior and self-efficacy in screening and management of children with ASD at baseline (pretest) and
after 6 months of ECHO Autism (posttest). Statistically significant improvements were observed in self-efficacy,
in adherence to ASD screening guidelines, and in use of ASD-specific resources. Participants also reported high
satisfaction with the program.

Keywords
autism, screening, comorbidity, training, general pediatrics

Autism spectrum disorder (ASD) is a complex medical
condition requiring comprehensive, coordinated, and
continuous care. The disorder is associated with signifi-
cant impairments in social, communication, and behav-
ioral domains,1 and high rates of medical and psychiatric
comorbidities.2,3 Dramatic increases in the prevalence,
cost, and societal impact of ASD4-6 have resulted in
greater demand for services and for a health care system
that is fully equipped to respond to those complex needs.
Early diagnosis and early intervention are essential for
optimal outcomes.7,8 Symptoms are usually present and
observable in toddlerhood,9 and ASD can be diagnosed
reliably by age 2 years.10,11 However, the average age of
identification of ASD is generally much later than the
first onset of symptoms, with recent estimates indicating
average age of diagnosis between 4.4 and 5.7 years.4,12-14
Early age at treatment initiation is one of the strongest
predictors of outcome8,15,16; thus, delayed identification
may result in suboptimal treatment response, increased
stress for families, and increased long-term societal
costs.17
Given their complex medical needs, children with
ASD also require treatment from multiple health care
providers,2 resulting in higher health care costs and
interference with daily life.18,19 Unmanaged comorbid
conditions contribute to increased stress and burden for
families,20,21 and families of children with ASD and
comorbid conditions experience poorer health care
experiences and greater financial strain than families of
those without comorbid conditions.22 Children with
ASD are at greater risk for unmet health care needs and
for higher health care expenditures than children with
other special health care needs.18,19,23,24 They are also
less likely to have access to coordinated and family-cen-
tered care, are less likely to have a primary care medical
home, and have greater unmet needs for specialty
care.18,25-27 Those from underserved populations (i.e.,
rural, racial, or ethnic minorities) are at even greater risk
for unmet needs.28,29 Overall, children with ASD experi-
1
University of Missouri, Columbia, MO, USA
Corresponding Author:
Micah O. Mazurek, Department of Health Psychology, University of
Missouri, Thompson Center for Autism and Neurodevelopmental
Disorders, 205 Portland Street, Columbia, MO, 65211, USA.
Email: mazurekm@missouri.edu

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2 Clinical Pediatrics 
ence significant barriers to timely identification, diagno-
sis, and management of health care needs.
Barriers to Health Care Access for
Children With ASD
Fifty-nine million people in the United States currently
live in Primary Medical Health Professional Shortage
Areas (HPSA)30 with 4204 identified Medically
Underserved Areas/Populations (MUA/MUP).31
Nineteen percent of the US population resides in rural
areas,32 and 23.3% of US children are living in pov-
erty.33 Families from these underserved areas or popula-
tions face significant financial, geographic, and
sociocultural challenges in accessing health care. Rural
and medically underserved areas have significant short-
ages of both primary and specialty care providers,34
requiring families to travel great distances to access ser-
vices. For families with limited financial resources or
transportation options, the availability of local special-
ists is directly related to their ability to access health
care for their children.35 Transportation safety is also a
concern for families of children with ASD due to com-
mon attempts to escape from vehicle safety restraints.36
Even for families who live in close proximity to ASD
specialists, the increasing prevalence of ASD4 has
resulted in diagnostic and treatment demands that far
exceed the capacity of specialty centers. As a result,
children with ASD face delays in diagnosis12 and sig-
nificant health care costs.19 Thus, there is a critical need
for improved access to high-quality care for all children
with ASD, particularly those from underserved areas
and populations.
Although primary care providers (PCPs) are perfectly
positioned to provide timely community-based health
care, they often feel ill-equipped to care for children with
ASD.37,38 Despite American Academy of Pediatrics
(AAP) recommendations for ASD screenings at 18 and
24 months of age for every child,7 few pediatricians com-
ply with these guidelines in actual practice. A recent
study of 481 pediatricians and family practice physicians
found that only 17% routinely screen for ASD according
to AAP guidelines.39 Furthermore, those who had less
confidence in recognizing symptoms, less knowledge of
diagnostic features, or no previous training in ASD were
less likely to screen for ASD. A lack of familiarity with
screening tools was also reported as a primary barrier.
In addition to their primary symptoms, children with
ASD are also at increased risk for a number of co-occur-
ring conditions that could be managed by PCPs, includ-
ing sleep problems, constipation, and psychiatric
symptoms.3,40,41 However, PCPs report a lack of confi-
dence in providing care for these comorbidities. A recent
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study found that a majority of PCPs (55%) and parents
(57%) described PCPs as being “not good” at providing
care for associated conditions in children with ASD.
Both parents and PCPs reported little confidence in man-
aging sleep problems, anxiety, depression, and aggres-
sion, in particular. A majority of respondents also
reported that PCPs lack knowledge of community sup-
ports, services, and therapies for ASD.42 Qualitative find-
ings suggest that although PCPs report a desire to
improve their services for children with ASD, training
and knowledge gaps pose significant barriers.26 These
PCP practice barriers may explain some of the significant
unmet health care needs experienced by children with
ASD37,38 and may contribute to the disproportionately
higher hospitalization rates, greater expenditures, and
greater use of psychotropic medications in children with
ASD.19,23,43,44 Thus, there is a critical need for programs
to support PCPs in providing best-practice medical care
for children with ASD. According to these prior results,
PCPs need specific support in screening and identifica-
tion of ASD symptoms and in ongoing management of
associated medical and psychiatric conditions.
A Model for Building Primary Care
Capacity
Because ASD is a complex condition with a rapidly
evolving body of scientific evidence, innovative and
flexible models are needed for training and ongoing
mentorship of PCPs. As such, the Extension for
Community Healthcare Outcomes (ECHO) model may
be a perfectly suited approach. Project ECHO was
developed at the University of New Mexico Health
Sciences Center as a mechanism to improve outcomes
for individuals with hepatitis C virus infection living in
underserved areas.45 The model was designed to build
local health care capacity and improve access to best-
practice care for minorities and underserved rural popu-
lations in New Mexico. In the ECHO model, PCPs are
connected by secure videoconferencing technology to a
team of specialists at an academic medical center.
During weekly ECHO Clinics, specialists provide edu-
cation in best-practice treatment protocols, case-based
learning, and co-management.46,47 The training model is
consistent with well-established learning theories, such
as social cognitive theory,48,49 situated learning theory,50
and community of practice theory,51 emphasizing col-
laborative learning, coaching, and mentorship from both
experts and peers.
The ECHO model has demonstrated effectiveness in
improving provider self-efficacy46 and patient outcomes
for hepatitis C virus infection,45 and has rapidly
expanded to address a number of other complex medical
Mazurek et al 3

conditions. For example, ECHO has been used for rheu- Table 1.  Provider and Practice Characteristics.
matoid arthritis, diabetes, chronic pain, HIV/AIDS,
Number Percentage
addiction, and psychiatric problems.47,52-54 However, (n) (%)
this model has not yet been applied to the health care of
children with ASD or other developmental disorders. General practice information
The ECHO model is particularly well suited to address Provider type
the complex needs of children with ASD and to reduce  Pediatrician 10 71
health care disparities for underserved or rural children   Family medicine physician 1 7
and families. By equipping PCPs to provide best-prac-   Nurse practitioner 2 14
 Other 1 7
tice care, specialty knowledge would be moved directly
Practice type
into local communities. As a result, families would be
  Private group practice 6 43
better able to access affordable, timely, and culturally
  Academic medical center 1 7
appropriate care. Additionally, equipping PCPs with
  Federally qualified health 2 14
better skills for identification and management of ASD center
symptoms would promote earlier diagnosis, earlier   Community health agency 1 7
access to intervention, and improved overall health for   Rural health 2 14
children and families.   Other/not reported 2 14
The purpose of this pilot project was to develop and Practice location designation(s)
test a new application of the ECHO model for training  PC-HPSA 11 79
PCPs in best-practice care of ASD. The pilot project  MUA/MUP 11 79
included development and implementation of a   Neither HPSA nor MUA/ 3 14
6-month ECHO Autism curriculum, consisting of MUP
2-hour clinics occurring twice per month, with a spe- Autism spectrum disorder–specific provider information
cific focus on training PCPs in (1) screening and iden- Prior autism spectrum disorder training
tification of ASD symptoms and (2) management of  No 9 64
common medical and psychiatric comorbidities. The  Yes 4 29
primary hypothesis was that participation in ECHO   If yes, type(s) of training:
Autism would improve PCP self-efficacy in providing   Coursework content 2 —
  Workshop 1 —
care for children with ASD. Additional indicators of
  Conference 1 —
feasibility, participant satisfaction, and practice change
  Residency rotation 2 —
were also examined.
Number of children with autism spectrum disorder seen in
practice per year
 <10 2 14
Methods
 10-20 6 43
Participants  >20 7 50

Primary care providers from across the state of Missouri
were recruited for participation in the ECHO Autism pilot
project. Recruitment strategies include attendance at
regional face-to-face meetings, social and traditional
media posts, state-wide primary care association listservs,
and word-of-mouth strategies. Although recruitment
efforts focused on the state of Missouri, word-of-mouth
efforts also resulted in interest from out-of-state partici-
pants. Average attendance during the 6-month pilot was
18.83 attendees per clinic (SD = 3.56) with a range of 12
to 25 (including both active participants and observers). A
total of 134.5 hours of Continuing Medical Education
were awarded during the pilot. On enrollment into the
program, PCPs were also invited to participate in the
research study described below. The study was approved
by the institutional review board at the University of
Missouri. Fourteen participants provided consent for the
Abbreviations: PC-HPSA, Primary Care Health Professional Shortage
Area, designated by the US Department of Health and Human
Services30; MUA/MUP, Medically Underserved Area and Population
federal designation, based on the Index of Medical Underservice.31
research portion of the project and completed a battery of
questionnaires at baseline (pretest) and after 6 months of
participation in ECHO Autism (posttest). Participants
were provided with a monetary incentive for survey com-
pletion at each time point. Demographic and provider
characteristic data were collected for the study sample
only (n = 14). Participants ranged in age from 31 to 57
years (M = 40.8, SD = 8.8), and had between 2 and 29
years of practice (M = 6.1, SD = 7.4). The majority of
participants were female (78.6%), non-Hispanic (85.7%),
and Caucasian (92.9%). Additional provider and practice
characteristics are shown in Table 1.

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4 Clinical Pediatrics 
ECHO Autism Model
The ECHO Autism clinics were conducted using high-
quality secure videoconferencing technology by which
participating PCPs were connected to one another and
to the expert panel. Technology requirements for par-
ticipants included access to high-speed Internet and a
forward facing video camera. During the 6-month pilot,
clinics were conducted twice per month for 2 hours per
clinic. The expert panel was located at an academic
medical center and was composed of a pediatrician spe-
cializing in ASD, a clinical psychologist, a child and
adolescent psychiatrist, a dietician, a social worker, and
a parent of a child with ASD. Each clinic operated as a
“knowledge network,” consistent with the overall
Project ECHO model,46 in which participants engaged
in case-based learning, didactics, and co-management.
Rather than traditional telemedicine or one-to-one con-
sultation approaches, PCPs in ECHO Autism main-
tained responsibility for care of their patients, building
skills through guided practice and collaborative learn-
ing. Each clinic consisted of a brief didactic focused on
best-practice care of children with ASD, and 2 PCP-
generated case presentations. Didactic topics empha-
sized up-to-date knowledge and best-practice guidelines
focused on screening and identification of ASD and on
management of comorbid conditions.7,55-62 Case presen-
tations included de-identified clinical information, rec-
ommendations from the expert panel, and discussion
among all participants. Cases were re-presented as fol-
low-up presentations (generally 4-6 weeks after the ini-
tial presentation) to monitor progress. In this way, PCPs
engaged in shared learning, peer support, and opportu-
nities for guided practice.
Measures
Participants completed de-identified questionnaires at
pretest (during the week prior to attending the first
ECHO Autism clinic) and at posttest (2 weeks following
the final ECHO Autism pilot clinic). All questionnaires
were developed for the purpose of the current study.
Measures were completed online using a Web-based
data collection system, REDCap (Research Electronic
Data Capture).63
Provider Information.  Demographic information included
age, race, ethnicity, sex, provider type, practice setting,
zip code of practice, and current and previous ASD
experience. Zip code of practice was used to determine
whether practice locations met criteria for Primary Care
Health Professional Shortage Area (PC-HPSA), desig-
nated by the US Department of Health and Human
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Services,30 and/or for Medically Underserved Areas/
Populations (MUA/MUP) federal designation, based on
the Index of Medical Underservice.31 Participants also
reported their reasons for interest in participation in
ECHO Autism and their perceived barriers to care for
children with ASD.
Self-Efficacy.  Provider self-efficacy in screening and man-
agement of children with ASD was assessed at pretest and
posttest using a self-report questionnaire developed for
the current study. The questionnaire was composed of 57
items across 5 domains: (1) ASD screening and identifi-
cation (7 items), (2) ASD referral and resources (9 items),
(3) assessment and treatment of medical comorbidities
(19 items), (4) assessment and treatment of psychiatric
comorbidities (13 items), and additional (9 items assess-
ing additional aspects of care for children with ASD, such
as answering questions about immunizations, anticipa-
tory guidance, etc). Participants reported the degree to
which they felt confident in their ability to effectively
provide care in each domain. Items were rated on a
6-point Likert-type scale (ranging from 1= “no confi-
dence” to 6 = “highly confident/expert”). A total self-effi-
cacy score was calculated as a sum of all items, and
subscale scores were calculated as the sum of all items
within each domain. Cronbach’s alpha coefficients were
examined to assess internal consistency. Strong internal
consistency was observed for both the total scale (.98)
and each subscale (ranging from .88 to .97).
Practice Behavior. Indicators of practice behavior were
assessed at pretest and posttest. Participants reported
whether they had administered the M-CHAT (Modified
Checklist for Autism in Toddlers) or another autism
screening tool during the past 6 months (yes/no), during
18-month well-child visits (yes/no; and if yes, the per-
centage of visits), and during 24-month well-child visits
(yes/no; and if yes, the percentage of visits). Adherence
to AAP Guidelines for ASD screening was defined as
administration of autism-specific screening tools at all
18-month and 24-month well-child visits.7 Participants
were also asked to report whether they used specific
resources (out of 15) developed by the ATN/AIR-P
(Autism Treatment Network/Autism Intervention
Research Network on Physical Health).
Fidelity.  Fidelity to the ECHO model was assessed during
each clinic using a 25-item Facilitation Score Card, which
assesses facilitator engagement of participants and other
indicators of adherence to the ECHO model. Ratings
were completed by observers who rated facilitator behav-
iors on a 5-point scale (1 = “strongly agree,” 5 = “strongly
disagree”). Fidelity scores for each clinic were calculated
Mazurek et al 5

Table 2.  Reasons for Interest and Perceived Barriers. Table 3.  Presenting Problems in Cases Presented.

Number Percentage (%) Number of Percentage

Reasons for interest in ECHO
Autism
  Desire to learn more about
autism
Desire to increase comfort
with associated behavioral
and medical conditions in
autism
  Access to specialists
  Networking with colleagues
  Continuing Medical
Education
Perceived barriers to caring
for children with autism
spectrum disorder
  Lack of time
  Lack of access to autism
specialists
  Lack of self-efficacy in
managing children with
autism
  Lack of support from
administration
  Inadequate reimbursement
Abbreviation: ECHO, Extension for Community Healthcare
Outcomes.
by calculating percent of items rated as “strongly agree”
or “agree” out of the total number of items assessed.
Cases (n = 18) (%)
(n = 13)  
Primary presenting problem
13 100 Screening/identification of 9 50
autism spectrum disorder
13 100 symptoms
Management of co-occurring 9 50
symptoms
Presenting problems by type (most to least frequent)
9 69 Medical 18 100
5 39   Diet/feeding concerns 11 61
4 31   Sleep problems 9 50
  Miscellaneous medical 6 33
(n = 14)     Neurological symptoms 5 28
  Gastrointestinal problems 3 17
 Obesity 2 11
12 86 Psychiatric 12 67
9 64  Anxiety 5 28
 Aggression/challenging 5 28
6 43 behavior
  Emotion regulation/mood 3 17
 Hyperactivity/impulsivity 3 17
2 14
Additional concerns 13 72
  Family stress/trauma 4 22
2 14
  School problems 4 22
  Sensory symptoms 3 17
 Speech/language 3 17
 Toileting 2 11
 Transition 2 11
  Motor skills 1 6
 Wandering 1 6

Satisfaction.  Participants completed a 10-item Satisfac-

tion Survey at posttest to assess overall satisfaction with
ECHO Autism (see Table 4).
Data Analysis Plan
Descriptive statistics (i.e., mean, standard deviation,
range, percentage) were conducted to characterize the
sample and variables of interest. For the primary hypoth-
esis, we were interested in examining improvement in
self-efficacy from pretest to posttest. Because the data
were not normally distributed, a nonparametric
approach, the Wilcoxon signed-rank test, was chosen to
examine changes in both Total Self-Efficacy and Self-
Efficacy subdomains from pretest to posttest.
Results
Provider Characteristics
See Table 1 for descriptive data regarding provider
and practice characteristics. Most participants were
pediatricians (71.4%), practiced in HPSA and/or
MUA/MUP locations (78.9%), and had no prior ASD
training (64.3%).
Reasons for Interest and Identified Barriers
All (100%) of participants indicated a desire to learn
more about autism and co-occurring conditions, and
reported barriers to care for children with ASD (see
Table 2).
Case Presentation Topics
Eighteen cases were presented by ECHO Autism par-
ticipants during the 6-month pilot, 50% were related to
screening/identification of ASD, and 50% were focused
on management of comorbidities in children with ASD
(see Table 3). The most common specific co-occurring
conditions were diet/feeding concerns (61% of cases)
and sleep problems (50% of cases).

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6 Clinical Pediatrics 

Table 4.  Participant Satisfaction With ECHO Autism.

Question (“strongly agree” = 1,

“strongly disagree” = 5) M SD
  1. Participation in ECHO Autism 1.57 0.51
improved my ability to care
for children with autism in my
practice.
  2.  I learned best-practice care in 1.50 0.52
autism through participation in
EHCO Autism.
  3.  I was able to connect with 1.57 0.51
peers and colleagues through
participation in ECHO Autism.
  4.  ECHO Autism specialists 1.36 0.50
provided guidance in managing
children with autism.
  5.  I respected the professional 1.21 0.43
advice received from ECHO
Autism experts.
  6.  The didactic presentations 1.43 0.51
enhanced my knowledge about
autism. Figure 1.  Improvement in self-efficacy total score.
  7.  Discussions with other 1.64 0.63
participants enhanced my for ASD screening increased from 30% to 60% from
knowledge about autism.
pre- to posttest (see Figure 3). Among all participants,
  8.  Case-based learning increased 1.29 0.47
my knowledge about autism.
the use of autism-specific resources increased signifi-
  9.  I have been satisfied with the 1.43 0.51 cantly from pretest (M = 0.29, SD = 0.47 resources used)
technology associated with the to posttest (M = 4.07, SD = 3.77; Z = −2.95, P = .003).
ECHO Autism clinic.
10.  The technology for the ECHO 1.50 0.65
Autism clinic functioned smoothly. Satisfaction
Participants reported high satisfaction with ECHO
Abbreviation: ECHO, Extension for Community Healthcare
Outcomes. Autism, with an average rating of 1.45 (SD = 0.39)
across all questions, with “1” indicating the highest sat-
isfaction (see Table 4).
Fidelity
Fidelity was greater than 80% for all clinics, with an Discussion
average of 90.1% across the 6-month pilot.
The purpose of the current pilot project was to develop
and test an innovative model for enhancing care for chil-
Pre- to Posttest Improvements in Self-Efficacy
dren with ASD. The results of this pilot project show that
Total self-efficacy raw scores improved significantly the ECHO Autism model is both feasible and effective for
from pretest (M = 177.15, SD = 46.59) to posttest increasing capacity for best-practice medical care for
(M = 227.43, SD = 21.59; Z = −3.06, P = .002), as did children with ASD. This is a critical issue, as the increas-
scores in each subdomain, including screening, (Z = ing prevalence and impact of ASD have resulted in grow-
−260, P = .009), resources (Z = −3.11, P = .002), ing demands for health care services.4-6 Children with
medical (Z = −2.68, P = .007), psychiatric (Z = −3.06, ASD have complex medical problems, yet they are at
P = .002), and additional (Z = −2.87, P = .004) (see high risk for unmet health care needs.18,64-66 Delays in
Figures 1 and 2). identification of ASD result in poor long-term outcomes
and increased costs,7,8,17 and unmanaged comorbid condi-
tions can lead to even greater burden and reduced quality
Practice Behavior
of life.18,19 Thus, innovative models are needed for
Of the 10 participants who identified as pediatricians, improving health care access and for enhancing primary
the percentage in full compliance with AAP guidelines care capacity to provide high-quality care for children

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Mazurek et al 7
Figure 2.  Improvement in self-efficacy subscale scores.
Figure 3.  Percentage of pediatricians in full compliance
with American Academy of Pediatrics autism screening
guidelines.a
a
Compliance with American Academy of Pediatrics screening
guidelines was defined as administration of autism spectrum disorder
(ASD)–specific screening tools at 100% of 18- and 24-month well-
child visits conducted over the prior 6-month period.
with ASD. The Project ECHO model was specifically
developed to train and mentor community-based provid-
ers in best-practice care for complex conditions among
adults.45,47,52-54 The current results provide support for the
application of this model to a new condition (autism) and
a new patient population (children).
Consistent with our primary hypothesis, participants in
ECHO Autism demonstrated significant improvements in
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self-efficacy across all domains of medical care for chil-
dren with ASD, including screening and identification,
assessment and treatment of medical and psychiatric
comorbidities, and knowledge of and referral to appropri-
ate resources. These results are particularly important in
that low PCP self-efficacy in these domains has been
identified as a key barrier to health care access for chil-
dren with ASD.39,42 Similarly, 43% of participants in the
current study identified lack of self-efficacy as a barrier to
management of children with ASD in their practices prior
to participation in ECHO Autism, and 100% reported a
strong desire to increase knowledge and comfort in treat-
ing children with ASD.
Participants in ECHO Autism also demonstrated
improvements in their practice patterns. The number of
providers who fully adhered to AAP autism screening
guidelines increased from 30% to 60% from pre- to
posttest. Furthermore, participation in ECHO Autism
resulted in a notable increase in the use of autism-spe-
cific resources in PCP practices. Thus, the program was
effective in disseminating best-practice guidelines and
resources in a way that resulted in actual practice change.
These preliminary results are promising and suggest
that ECHO Autism warrants additional consideration as
an effective means of increasing access to health care for
children with ASD. The majority of participants in this
pilot study were practicing in underserved locations.
Thus, improved PCP competence in best-practice care
for children with ASD is expected to have a direct and
positive impact on the health care access for under-
served children with ASD in each respective catchment
area. Increased knowledge of ASD symptoms and
8 Clinical Pediatrics 
increased adherence to best-practice screening guide-
lines among PCPs is also expected to foster earlier diag-
noses for children with ASD, thereby facilitating earlier
intervention. Furthermore, increased PCP competence
in managing comorbid medical and psychiatric condi-
tions in children with ASD should have beneficial effects
on overall health and reduced health-care costs.
Additional research on patient outcomes is needed to
directly test this hypothesis.
The ECHO Autism curriculum was developed to
assess critical areas of need identified in prior research:
early identification and screening of ASD symptoms,
and management of common co-occurring medical con-
ditions.3,7,12,40,41 These areas are well within the scope of
practice of primary care, yet a majority of PCPs do not
feel adequately trained to effectively manage these
issues.42 Interestingly, although case presentation topics
were unsolicited (meaning that PCP participants selected
their own cases, and voluntarily presented them), the
topics aligned perfectly with the primary educational
aims of the program. Half of the cases presented were
related to identification and screening, and half were
related to management of comorbidities. This suggests
that perceived needs for support were aligned with the
preselected program emphasis areas. Regarding present-
ing concerns, diet, sleep, anxiety, aggression, and neuro-
logical symptoms were the most frequent topics.
Limitations and Future Directions
The current study describes the results of an initial pilot
of the ECHO Autism model. As such, the study was lim-
ited by a small sample size, lack of control or compari-
son group, and lack of direct measures of practice
change or patient outcomes. However, the results are
promising and suggest a need for additional studies
using larger samples, more rigorous research designs,
and more comprehensive measures. Overall, these pre-
liminary findings indicate that the ECHO Autism model
is feasible, effective, and associated with high satisfac-
tion among participants. We hope that the current results
will inform future research on the use of this model for
increasing access to health care for children with ASD
and other complex medical conditions.
Acknowledgments
We gratefully acknowledge all the health care providers who
participated in this study and thank them for their ongoing
efforts to provide the best possible care for children with
autism. Thanks also to Sheila Chapman and Jennifer Hallman
for their expertise on the ECHO Autism Expert Panel. We also
thank the members of the Missouri Telehealth Network,
including Rachel Mutrux, Mirna Becevic, Danny Myers, Katie
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Vollmer, Candy Garb, Mary Beth Schneider, and Omer Malik,
for all their help with recruitment, data collection, and project
implementation. Finally, we are grateful to the ECHO Institute
team at the University of New Mexico Health Sciences Center
for their assistance throughout the project.
Author Contributions
MOM collaborated with KS in the conceptualization and
design of the study, drafted the initial manuscript, conducted
the analyses, and approved the final manuscript as submitted.
RB and AC collaborated in project development and data col-
lection, critically reviewed and revised the manuscript, and
approved the final manuscript as submitted. KS conceptual-
ized and designed the study, coordinated recruitment and data
collection, reviewed and revised the manuscript, and approved
the final manuscript as submitted.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial sup-
port for the research, authorship, and/or publication of this arti-
cle: This project was supported by the Health Resources and
Services Administration (HRSA) of the US Department of
Health and Human Services (DHHS) under cooperative agree-
ment UA3 MC11054—Autism Intervention Research Network
on Physical Health. This information or content and conclusions
are those of the authors and should not be construed as the offi-
cial position or policy of, nor should any endorsements be
inferred by HRSA, HHS, or the US Government. This work was
conducted through the Autism Speaks Autism Treatment
Network serving as the Autism Intervention Research Network
on Physical Health. The project was also supported by The Leda
J. Sears Charitable Trust supporting the Department of Child
Health Research Fund, and by the WellCare Innovation Institute.
References
1. American Psychiatric Association. Diagnostic and
Statistical Manual of Mental Disorders, Fifth Edition
(DSM-5). Washington, DC: American Psychiatric
Association; 2013.
2. Myers SM, Johnson CP. Management of children
with autism spectrum disorders. Pediatrics. 2007;120:
1162-1182.
3. Simonoff E, Pickles A, Charman T, Chandler S, Loucas
T, Baird G. Psychiatric disorders in children with autism
spectrum disorders: prevalence, comorbidity, and associ-
ated factors in a population-derived sample. J Am Acad
Child Adolesc Psychiatry. 2008;47:921-929.
4. Centers for Disease Control and Prevention. Prevalence of
autism spectrum disorder among children aged 8 years—
Autism and Developmental Disabilities Monitoring
Mazurek et al 9
Network, 11 Sites, United States, 2010. MMWR: Surveill
Summ. 2014;63:1-21.
5. Ganz ML. The lifetime distribution of the incremen-
tal societal costs of autism. Arch Pediatr Adolesc Med.
2007;161:343-349.
6. Ganz ML. The costs of autism. In: Moldin SO, Rubenstein
JL, eds. Understanding Autism: From Basic Neuroscience
to Treatment. Boca Raton, FL: CRC Press; 2006:475-502.
7. Johnson CP, Myers SM; American Academy of Pediatrics
Council on Children With Disabilities. Identification and
evaluation of children with autism spectrum disorders.
Pediatrics. 2007;120:1183-1215.
8. Rogers SJ, Vismara LA. Evidence-based comprehensive
treatments for early autism. J Clin Child Adolesc Psychol.
2008;37:8-38.
9. De Giacomo A, Fombonne E. Parental recognition of
developmental abnormalities in autism. Eur Child Adolesc
Psychiatry. 1998;7:131-136.
10. Kleinman JM, Ventola PE, Pandey J, et al. Diagnostic sta-
bility in very young children with autism spectrum disor-
ders. J Autism Dev Disord. 2008;38:606-615.
11. Charman T, Taylor E, Drew A, Cockerill H, Brown
JA, Baird G. Outcome at 7 years of children diagnosed
with autism at age 2: predictive validity of assessments
conducted at 2 and 3 years of age and pattern of symp-
tom change over time. J Child Psychol Psychiatry.
2005;46:500-513.
12. Mazurek MO, Handen BL, Wodka EL, Nowinski L,
Butter E, Engelhardt CR. Age at first autism spectrum dis-
order diagnosis: the role of birth cohort, demographic fac-
tors, and clinical features. J Dev Behav Pediatr. 2014;35:
561-569.
13. Shattuck P, Durkin M, Maenner M, et al. Timing of iden-
tification among children with an autism spectrum disor-
der: findings from a population-based surveillance study.
J Am Acad Child Adolesc Psychiatry. 2009;48:474-483.
14. Mandell DS, Morales KH, Xie M, Lawer LJ, Stahmer
AC, Marcus SC. Age of diagnosis among Medicaid-
enrolled children with autism, 2001-2004. Psychiatr Serv.
2010;61:822-829.
15. Dawson G. Early behavioral intervention, brain plastic-
ity, and the prevention of autism spectrum disorder. Dev
Psychopathol. 2008;20:775-803.
16. Mazurek MO, Kanne SM, Miles JH. Predicting improve-
ment in social-communication symptoms of autism spec-
trum disorders using retrospective treatment data. Res
Autism Spectr Disord. 2012;6:535-545.
17. Fombonne E. A wrinkle in time: from early signs to a
diagnosis of autism. J Am Acad Child Adolesc Psychiatry.
2009;48:463-464.
18. Kogan MD, Strickland BB, Blumberg SJ, Singh GK,
Perrin JM, van Dyck PC. A national profile of the health
care experiences and family impact of autism spectrum
disorder among children in the United States, 2005-2006.
Pediatrics. 2008;122:e1149-e1158.
19. Liptak GS, Stuart T, Auinger P. Health care utilization
and expenditures for children with autism: data from US
national samples. J Autism Dev Disord. 2006;36:871-879.
Downloaded from cpj.sagepub.com at UNIV NEBRASKA LIBRARIES on June 1, 2016
20. Benson PR, Karlof KL. Child, parent, and family pre-
dictors of latter adjustment in siblings of children with
autism. Res Autism Spectr Disord. 2008;2:583-600.
21. Estes A, Munson J, Dawson G, Koehler E, Zhou XH,
Abbott R. Parenting stress and psychological function-
ing among mothers of preschool children with autism and
developmental delay. Autism. 2009;13:375-387.
22. Zablotsky B, Kalb LG, Freedman B, Vasa RA, Stuart EA.
Health care experiences and perceived financial impact
among families of children with an autism spectrum dis-
order. Psychiatr Serv. 2014;65:395-398.
23. Gurney JG, McPheeters ML, Davis MM. Parental report
of health conditions and health care use among children
with and without autism: National Survey of Children’s
Health. Arch Pediatr Adolesc Med. 2006;160:825-830.
24. Croen LA, Najjar DV, Ray GT, Lotspeich L, Bernal
P. A comparison of health care utilization and costs
of children with and without autism spectrum disor-
ders in a large group-model health plan. Pediatrics.
2006;118:e1203-e1211.
25. Krauss MW, Gulley S, Sciegaj M, Wells N. Access to spe-
cialty medical care for children with mental retardation,
autism, and other special health care needs. Ment Retard.
2003;41:329-339.
26. Carbone P, Behl D, Azor V, Murphy N. The medical
home for children with autism spectrum disorders: par-
ent and pediatrician perspectives. J Autism Dev Disord.
2010;40:317-324.
27. Sheldrick RC, Perrin EC. Medical home services for
children with behavioral health conditions. J Dev Behav
Pediatr. 2010;31:92-99.
28. Newacheck PW, Hung Y-Y, Wright KK. Racial and eth-
nic disparities in access to care for children with special
health care needs. Ambul Pediatr. 2002;2:247-254.
29. Skinner AC, Slifkin RT. Rural/urban differences in barri-
ers to and burden of care for children with special health
care needs. J Rural Health. 2007;23:150-157.
30. Bureau of Health Workforce, Health Resources and
Services Administration (HRSA), US Department of
Health & Human Services HRSA Data Warehouse.
Designated Health Professional Shortage Areas Statistics.
Washington, DC: US Department of Health & Human
Services; 2015. http://datawarehouse.hrsa.gov/tools/
hdwreports/reports.aspx. Accessed November 20, 2015.
31. Health Resources and Services Administration (HRSA),
US Department of Health & Human Services HRSA Data
Warehouse. Medically Underserved Areas/Populations
(MUA/P). Washington, DC: US Department of Health &
Human Services; 2015. http://datawarehouse.hrsa.gov/
tools/hdwreports/reports.aspx. Accessed November 20,
2015.
32. US Census Bureau. 2010 Census Urban and Rural
Classification and Urban Area Criteria. Washington, DC:
US Census Bureau. http://www.census.gov/geo/www/
ua/2010urbanruralclass.html. Accessed April 21, 2016.
33. DeNavas-Walt C, Proctor BD. Income and Poverty in
the United States: 2014. Washington, DC: US Census
Bureau; 2015.
10 Clinical Pediatrics 
34. National Center for Health Statistics. Health, United States,
2010: With Special Feature on Death and Dying. Hyattsville,
MD: National Center for Health Statistics; 2011.
35. Gresenz CR, Rogowski J, Escarce JJ. Dimensions of
the local health care environment and use of care by
uninsured children in rural and urban areas. Pediatrics.
2006;117:e509-e517.
36. Yonkman J, Lawler B, Talty J, O’Neil J, Bull M. Safely
transporting children with autism spectrum disorder: evalu-
ation and intervention. Am J Occup Ther. 2013;67:711-716.
37. Golnik A, Scal P, Wey A, Gaillard P. Autism-specific
primary care medical home intervention. J Autism Dev
Disord. 2012;42:1087-1093.
38. Carbone PS. Moving from research to practice in the pri-
mary care of children with autism spectrum disorders.
Acad Pediatr. 2013;13:390-399.
39. Self TL, Parham DF, Rajagopalan J. Autism spectrum
disorder early screening practices a survey of physicians.
Commun Disord Q. 2015;36:195-207.
40. Richdale AL. Sleep problems in autism: prevalence, cause,
and intervention. Dev Med Child Neurol. 1999;41:60-66.
41. Wang LW, Tancredi DJ, Thomas DW. The prevalence
of gastrointestinal problems in children across the United
States with autism spectrum disorders from families
with multiple affected members. J Dev Behav Pediatr.
2011;32:351-360.
42. Carbone PS, Murphy NA, Norlin C, Azor V, Sheng X,
Young PC. Parent and pediatrician perspectives regarding
the primary care of children with autism spectrum disor-
ders. J Autism Dev Disord. 2013;43:964-972.
43. Mandell DS, Cao J, Ittenbach R, Pinto-Martin J. Medicaid
expenditures for children with autistic spectrum disorders:
1994 to 1999. J Autism Dev Disord. 2006;36:475-485.
44. Lokhandwala T, Khanna R, West-Strum D. Hospitalization
burden among individuals with autism. J Autism Dev
Disord. 2012;42:95-104.
45. Arora S, Thornton K, Murata G, et al. Outcomes of treat-
ment for hepatitis C virus infection by primary care pro-
viders. N Engl J Med. 2011;364:2199-2207.
46. Arora S, Kalishman S, Thornton K, et al. Expanding access
to hepatitis C virus treatment—Extension for Community
Healthcare Outcomes (ECHO) project: disruptive innova-
tion in specialty care. Hepatology. 2010;52:1124-1133.
47. Arora S, Kalishman S, Dion D, et al. Partnering urban
academic medical centers and rural primary care clini-
cians to provide complex chronic disease care. Health Aff
(Millwood). 2011;30:1176-1184.
48. Bandura A. Self-Efficacy: The Exercise of Control. New
York, NY: Freeman; 1997.
49. Bandura A. Social Foundations of Thought and Action.
Englewood Cliffs, NJ: Prentice Hall; 1986.
50. Vygotsky LS. Mind and Society: The Development of
Higher Mental Processes. Cambridge, MA: Harvard
University Press; 1978.
51. Lave J, Wenger E. Situated Learning: Legitimate
Peripheral Participation. New York, NY: Cambridge
University Press; 1991.
52. Scott JD, Unruh KT, Catlin MC, et al. Project ECHO: a
model for complex, chronic care in the Pacific Northwest
Downloaded from cpj.sagepub.com at UNIV NEBRASKA LIBRARIES on June 1, 2016
region of the United States. J Telemed Telecare.
2012;18:481-484.
53. Colleran K, Harding E, Kipp BJ, et al. Building capac-
ity to reduce disparities in diabetes training community
health workers using an integrated distance learning
model. Diabetes Educ. 2012;38:386-396.
54. Katzman JG, Comerci G, Boyle JF, et al. Innovative tele-
mentoring for pain management: project ECHO pain. J
Contin Educ Health Prof. 2014;34:68-75.
55. Malow BA, Byars K, Johnson K, et al. A practice path-
way for the identification, evaluation, and management of
insomnia in children and adolescents with autism spec-
trum disorders. Pediatrics. 2012;130(suppl 2):S106-S124.
56. Buie T, Campbell DB, Fuchs GJ, et al. Evaluation,
diagnosis, and treatment of gastrointestinal disorders in
individuals with ASDs: a consensus report. Pediatrics.
2010;125(suppl 1):S1-S18.
57. Furuta GT, Williams K, Kooros K, et al. Management of
constipation in children and adolescents with autism spec-
trum disorders. Pediatrics. 2012;130(suppl 2):S98-S105.
58. Vasa RA, Carroll LM, Nozzolillo AA, et al. A systematic
review of treatments for anxiety in youth with autism spec-
trum disorders. J Autism Dev Disord. 2014;44:3215-3229.
59. Mahajan R, Bernal MP, Panzer R, et al. Clinical practice
pathways for evaluation and medication choice for attention-
deficit/hyperactivity disorder symptoms in autism spectrum
disorders. Pediatrics. 2012;130(suppl 2):S125-S138.
60. Maglione MA, Gans D, Das L, Timbie J, Kasari C.
Nonmedical interventions for children with ASD: recom-
mended guidelines and further research needs. Pediatrics.
2012;130(suppl 2):S169-S178.
61. Zwaigenbaum L, Bryson S, Lord C, et al. Clinical assess-
ment and management of toddlers with suspected autism
spectrum disorder: insights from studies of high-risk
infants. Pediatrics. 2009;123:1383-1391.
62. Council on Children With Disabilities; Section on
Developmental Behavioral Pediatrics; Bright Futures
Steering Committee; Medical Home Initiatives for Children
With Special Needs Project Advisory Committee. Identifying
infants and young children with developmental disorders in
the medical home: an algorithm for developmental surveil-
lance and screening. Pediatrics. 2006;118:405-420.
63. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N,
Conde JG. Research electronic data capture (REDCap)—a
metadata-driven methodology and workflow process for
providing translational research informatics support. J
Biomed Inform. 2009;42:377-381.
64. Strickland B, McPherson M, Weissman G, van Dyck P,
Huang ZJ, Newacheck P. Access to the medical home:
results of the National Survey of Children With Special
Health Care Needs. Pediatrics. 2004;113(suppl 4):1485-
1492.
65. Silver EJ, Stein RE. Access to care, unmet health needs,
and poverty status among children with and without
chronic conditions. Ambul Pediatr. 2001;1:314-320.
66. Mayer ML, Cockrell Skinner A, Slifkin RT. Unmet need
for routine and specialty care: data from the national sur-
vey of children with special health care needs. Pediatrics.
2004;113:e109-e115.