You are on page 1of 6

Clinical Pediatrics

2014, Vol. 53(3) 225 –229
© The Author(s) 2014
Reprints and permissions:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/0009922814521284
cpj.sagepub.com
Article
Introduction
New research shows that toddlers who completed com-
prehensive developmental behavioral intervention,
known as the Early Start Denver Model (ESDM),
1

showed significant improvements in IQ, language,
adaptive behavior, and autism diagnosis. Moreover,
when researchers measured children’s brain EEG
activity, those young children with ASD who had com-
pleted the randomized clinical trial of ESDM relative
to controls showed more normalized patterns of brain
activity. This is important information for clinical prac-
tice and service delivery because it is necessary to
make effective EI services available to young children
and their families given this developmental “window
of opportunity.”
This article reviews the leading-edge research of
Dawson and others showing that effective early inter-
vention (EI) services have the capability to alter brain
function and social communication development in
young children at risk for ASD. In addition, this article
reviews the American Academy of Pediatrics (AAP)
recommendations that 18- and 24-month children be
screened for ASD to foster early identification of the
disorder. Third, it discusses limitations in current state
EI (Part C) services despite these best-practices and
research findings. Finally, it discusses the importance of
primary care physicians’ support to families in securing
community programming at the intensity viewed neces-
sary for optimal child outcome.
EI Alters the Trajectory of Brain
Development
In 1 randomized controlled study, the ESDM interven-
tion
1
was trialed in young children with ASD between
the ages of 18 and 30 months. ESDM was based on
developmental and applied behavioral analytic princi-
ples and was delivered by trained therapists and parents
over 2 years. Children randomized to the treatment
group received on average 15.2 h/wk of ESDM inter-
vention in addition to 5.2 h/wk of guided care from par-
ents. The children randomized to the control group
received on average 9.1 h/wk of individual community-
based therapies and 9.3 h/wk of group interventions
(such as developmental preschool) across the 2-year
span. Relative to children in the community group, chil-
dren in the ESDM group at 1 year displayed signifi-
cantly improved cognitive ability, but no group
differences were uncovered in adaptive behavior.
Follow-up at 2 years indicated that the ESDM group
continued to show significantly improved cognitive
ability, most notably in the areas of receptive and
521284CPJXXX10.1177/0009922814521284Clinical PediatricsBraddock and Twyman
research-article2014
1
Saint Louis University School of Medicine, MO, USA
Corresponding Author:
Barbara Braddock, Saint Louis University School of Medicine,
Knights of Columbus Developmental Center, SSM Cardinal Glennon
Children’s Medical Center, 1465 South Grand Blvd, St Louis, MO
63104, USA.
Email: bbraddoc@slu.edu
Access to Treatment for Toddlers
With Autism Spectrum Disorders
Barbara Braddock, PhD
1
and Kimberly Twyman, MD
1
Abstract
New research shows that intensive and early intervention (EI) has the potential to change brain function in young
children with Autism Spectrum Disorders (ASD). Despite the positive benefit of EI, many families (n = 16) reported
difficulties accessing EI services following an ASD diagnosis at the intensity viewed necessary for optimal child
outcome. Parents reported that on average they secured 6.81 hours of services per month and that limited access to
EI services led to increased parental stress at a time when a new ASD diagnosis was often overwhelming. Findings are
discussed in terms of support to families who are experiencing difficulties accessing care after new ASD diagnosis.
Keywords
autism spectrum disorders, early intervention
226 Clinical Pediatrics53(3)
expressive language abilities. In addition, the ESDM
and community groups differed in adaptive behaviors,
with the ESDM group demonstrating developing skills
in comparison to declining skills within the community
group. Overall, the study shows that 2 years of intensive
and developmentally appropriate intervention at around
15 h/wk resulted in significant improvements in lan-
guage and adaptive behaviors in young children with
ASD.
To understand how EI alters the trajectory of brain
development in children with ASD, Dawson et al
2

designed a secondary outcome study by measuring EEG
activity. Given that past research had documented atypi-
cal EEG activity in young children with ASD in response
to facial stimuli,
3,4
EEG activity was recorded in ESDM
participants while they viewed social (faces) and nonso-
cial (toys) stimuli. Results indicated that relative to chil-
dren in the community group, children in the ESDM
group did not differ significantly on measures of early-
stage perceptual face processing but showed significant
differences in EEG measurements of attention engage-
ment and active cognitive processing of social stimuli.
Moreover, children who had received the ESDM inter-
vention showed cortical activity similar to typically
developing children in response to the social (faces)
stimuli. Children who had received community inter-
vention showed an opposite pattern of results, as seen by
increased cortical activation in response to the nonsocial
(toys) stimuli. Functionally, greater cortical activity
while viewing faces was correlated with improved social
behavior in the ESDM group. These data show that EI
has the potential to change children’s experience with
people in ways that are relevant for social communica-
tive development and underlying brain function. In
everyday practice, these data clearly indicate that devel-
opmentally appropriate, intensive, and early treatment is
necessary to alleviate autism symptomatology in young
children with ASD.
Early Identification
To aid in early identification of ASD, the AAP, in a 2006
policy statement, recommended administering a stan-
dardized autism-specific screening tool to all children at
the 18-month preventive care visit.
5
This recommenda-
tion was later expanded to screen at 24 and 30 months to
identify those children who may regress in social com-
munication skills after 18 months of age. Active public
awareness campaigns by the Centers for Disease Control
and Prevention and other public organizations were
implemented to promote timely referral to specialized
assessments and EI services.
6
As research develops,
experts are defining early markers to more reliably
diagnose ASD in children <18 months of age by exam-
ining repetitive actions and communication deficits.
7
Given these activities, more and more toddlers are
referred for comprehensive ASD evaluations given
developmental concerns and/or failed autism-specific
screenings. Studies consistently show that early identifi-
cation and access to intensive EI services have posi-
tively influenced developmental trajectories in young
children with ASD.
1,2,8
However, advancing public pol-
icy and resultant service delivery models may be insuf-
ficient if families experiencing a new diagnosis of ASD
report decreased access to developmentally appropriate,
intensive EI services. Furthermore, a recent study docu-
mented that part C EI eligibility requirements vary
greatly from state to state, and current rates of enroll-
ment are less than expected to serve all children who
have moderate or severe developmental delays.
9
Access to Treatment
Families with infants or toddlers <3 years old, experi-
encing a new diagnosis of ASD may be eligible for part
C EI services (ie, 0-3 services) depending on a particular
state’s eligibility requirements. Through part C EI ser-
vice providers, young children with a diagnosis of ASD
often receive speech and language therapy, occupational
therapy, physical therapy, and early childhood education
services.
10
Families may secure community-based thera-
pies; to include psychology and counseling services; or
other services through providers based on individual
health insurance plans and payers. Families may also
enroll their children in community-based preschool set-
tings in which children are exposed to developmentally
appropriate activities and experiences.
Even so, access to behavioral treatment can be lim-
ited if families reside in underserved areas, including
both urban and rural locales. Individuals from diverse
underserved communities may experience additional
barriers that limit access to treatment, such as financial
stressors, transportation needs, inflexible work sched-
ules, and/or limited family support, among others.
Research has shown that families who are poor and
reside in a state with narrow eligibility requirements are
less likely to access part C EI services.
11
If treatment is
not secured at a young age, early core deficits may lead
to a cascading effect on children’s neurodevelopment,
which arises from impoverished social interactions with
others.
12
To examine EI service delivery, parents with toddlers
experiencing a new ASD diagnosis were questioned in a
Midwestern urban hospital. Only parents with children
<3 years of age who enrolled in an ASD parent educa-
tion program offered through Developmental and
Braddock and Twyman 227
Behavioral Pediatrics outpatient services were eligible
for participation. Questions were asked in regard to
type, intensity, provider setting, and general satisfaction
with regard to EI services.
Just prior to enrollment in an 8-week parent educa-
tion, 16 parents of young children between the ages of
21 and 34 months (mean age of 26.64 months) were
queried by therapists. All children had a medical
(Diagnostic and Statistical Manual of Mental
Disorders, fourth edition, text revision)
13
diagnosis of
ASD of at least 1 month or more prior to questioning.
All parents (100%) reported that EI services fell short
of what they believed was necessary for optimal child
outcomes. On average, parents reported that young
children received 6.8 visits (or estimated hours) of EI
services per month. Reports of services ranged from 0
to 13 visits (or estimated hours) per month. All parents
reported that EI services were provided in the family
home or day care setting. Of 16 participants, 3 were
enrolled in day care; 3 of 16 participants reported that
occupational and speech-language therapies were
delivered as cotreatments rather than individual treat-
ments in the home environment. Also, 2 parents
reported that they secured community-based services
in addition to part C EI services. (See Table 1 to review
programmatic data).
It is not entirely clear why 3 families had not accessed
part C EI services within a month or more after ASD
diagnoses. It may be that families experiencing a new
diagnosis may be confused about eligibility require-
ments. Families may also experience long wait lists and/
or reduced access to trained professionals to implement
community-based treatment. Furthermore, trained pro-
fessionals must be available to provide treatment in
natural environments at a recommended frequency for
maximum benefit.
Treatment Dosage
Intensity of EI services is paramount because more time
spent with children with ASD in active, positive engage-
ment relates to better outcomes in the later preschool
years.
14
Based on the available research, brain and
behavioral changes were documented following about
15 h/wk of direct therapy over 2 years.
1
One recent study
showed that a greater number of intervention hours were
positively related to the degree of improvement in young
children with ASD.
15
Therefore, it cannot be presumed
that intensive service delivery equates to our communi-
ty’s current EI practices of about 7 h/month when rec-
ommending services for young children with ASD. Our
data suggest that programs serving 0- to 3-year-old
Table 1. Frequency and Estimated Hours Per Month of 0 to 3 State-Supported EI Services and Other Community EI Services
Secured, as Reported by Parents Experiencing a New Diagnosis of ASD in Children <3 Years of Age.
a
Participant ST
0-3 State-Supported EI Services
ABA Day Care
Other Community Services
OT PT OT/ST ST OT Feeding Team
1 2/Month 4/Month
2 4/Month 8/Month
3 4/Month
4 4/Month 2/Month
5 12/Month
6
b

7 4/Month 4/Month 4/Month
8 4/Month 4/Month
9 4/Month 8/Month
10
b

11 4/Month
12 4/Month 8/Month Enrolled
13 4/Month Enrolled
14
b

15 4/Month 4/Month 4/Month 1/Month
16 4/Month Enrolled
Abbreviations: EI, early intervention; ASD, autism spectrum disorders; OT, occupational therapy; PT, physical therapy; ST, speech and language
therapy; OT/ST, combined occupational and speech therapy in 1 visit.
a
Mean total visits per month = 6.81 (or 6.81 estimated hours per month). Diagnostic and Statistical Manual of Mental Disorders
13
ASD diagnoses
were provided by medical practitioners at least 1 month before completion of parent questioning.
b
No secured EI services.
228 Clinical Pediatrics53(3)
children fell short in this Midwestern urban community
in comparison to the ideal documented in new research
targeting young children with ASD.
Role of the Primary Care Physician
Primary care physicians may be the first to meet parents
to discuss difficulties encountered after an ASD diagno-
sis has been made by an outside diagnostic center.
Creative solutions are often needed to access EI service
for toddlers with an ASD diagnosis. Primary care physi-
cians may find themselves engaged in problem solving
with families around topics such as treatment dosage,
self-advocacy needs, optimal home programming, and
access to additional community resources and supports.
Based on the reviewed research, primary care physi-
cians can advise families that both younger age and
more intervention hours positively affect developmental
outcomes in young children with ASD. To best inform
families, primary care physicians must also understand
the reported limitations of part C EI state services for
infants and toddlers in their particular locale as outlined
by Rosenberg and others.
9
With this information in
hand, primary care physicians may work with families
to determine if treatment dosage is optimal for the fami-
lies they serve. These physicians may also query fami-
lies to estimate if therapists are consistently available
and trained in autism-specific treatment strategies. In
some cases, families may be linked to community agen-
cies offering advocacy supports to families in attempts
to secure additional and/or appropriate services for their
children.
Furthermore, primary care physicians must empha-
size the importance of providing countless learning
opportunities for children with ASD in the home envi-
ronment. For example, development theory suggests
that children are active in the learning process and learn
best through collaborations with others in a language-
rich environment.
16,17
Information about developmental
theory may equate to parents understanding how to talk
and play in developmentally appropriate ways with their
children in the home environment. Parents must be
encouraged to obtain recommendations from their
child’s EI specialists for continued learning opportuni-
ties in the home environment.
Primary care physicians must encourage families to
“think outside the box” in terms of service delivery
options in their own homes and communities. Given
the funding constraints in both health and educational
arenas, families may need to focus on “doing more
with less.” If available to families, university programs
may offer therapeutic services and innovative pro-
gramming at reduced rates. Families may train other
family members or close friends in methods by which
to structure increased learning opportunities for their
children. Families may also supplement part C EI ser-
vices with community-based intervention through
local hospitals, rehabilitation centers, local agencies,
and/or private practices.
As reported, families experiencing a new ASD diag-
nosis may feel overwhelmed when accessing services
for toddlers with a new diagnosis of ASD. Parents may
need encouragement to locate parent support groups and
respite services in their local communities. For up-to-
date factual information, new clinician and family edu-
cational materials have been released by the AAP.
18-20

Parents may also require support to navigate systems
designed to qualify persons for needed service pro-
grams. As stakeholders continue to work to improve
systems of care for toddlers with ASD, pediatricians
must consider creative ways by which to provide inten-
sive and appropriate ASD interventions to young chil-
dren in local communities and natural environments.
More research into best practices and treatment dosage
is needed in this young ASD population.
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
article: This work was partially supported by John Allan Love
Charitable Foundation and CVS Caremark Community Grant.
References
1. Dawson G, Rogers S, Munson J, et al. Randomized, con-
trolled trial of an intervention for toddlers with autism:
The Early Start Denver Model. Pediatrics. 2010;125:
e17-e23.
2. Dawson G, Jones EJH, Merkle K, et al. Early behavioral
intervention is associated with normalized brain activity
in young children with Autism. J Am Acad Child Adolesc
Psychiatry. 2012;51:1150-1159.
3. Dawson G, Carver L, Meltzoff AN, Panagiotides H,
McPartland J, Webb SJ. Neural correlates of face and
object recognition in young children with autism spec-
trum disorder. Child Dev. 2002;73:700-717.
4. Webb SJ, Dawson G, Bernier R, Panagiotides H. ERP evi-
dence of atypical face processing in young children with
autism. J Autism Dev Disord. 2006;36:881-890.
5. American Academy of Pediatrics, Council on Children
with Disabilities; Section on Developmental Behavioral
Pediatrics; Bright Futures Steering Committee; Medical
Home Initiatives for Children with Special Needs Project
Braddock and Twyman 229
Advisory Committee. Identifying infants and young chil-
dren with developmental disorders in the medical home:
an algorithm for developmental surveillance and screen-
ing. Pediatrics. 2006;118:405-420.
6. 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. 2008;123:1383-1391.
7. Iverson JM, Wozniak RH. Variation in vocal-motor
development in infant siblings in children with autism. J
Autism Dev Disord. 2007;37:158-170.
8. Corsello C. Early intervention in autism. Infant Young
Child. 2005;18:74-85.
9. Rosenberg SA, Robinson CC, Shaw EF, Ellison MC, Part
C. Early intervention for infants and toddlers: percentage
eligible versus served. Pediatrics. 2013;131:38-46.
10. Raspa M, Hebbeler K, Bailey DB, Scarborough AA.
Service provider combinations and the delivery of early
intervention services to children and families. Infant
Young Child. 2010;23:132-144.
11. McManus B, McCormick MC, Acevedo-Garcia D, Ganz
M, Hauser-Cram P. The effect of state early interven-
tion eligibility policy on participation among a cohort of
young CSHCN. Pediatrics. 2009;124:S368-S374.
12. Mundy P, Burnette C. Joint attention and neurodevel-
opment. In: Volkmar F, Klin A, Paul R, eds. Handbook
of Autism and Pervasive Developmental Disorders.
Hoboken, NJ: John Wiley; 2005.
13. American Psychiatric Association. Diagnostic and
Statistical Manual of Mental Disorders. 4th ed, text revision.
Washington, DC: American Psychiatric Association; 2000.
14. Lord C, McGee JP, eds. Committee on Educational
Interventions for Children With Autism. Educating
Children With Autism. Washington, DC: National
Academies Press; 2001.
15. Rogers SJ, Estes A, Lord C, et al. Effects of a brief Early
Start Denver Model (ESDM)-based parent intervention on
toddlers at risk for autism spectrum disorders: a random-
ized controlled trial. J Am Acad Child Adolesc Psychiatry.
2012;51:1052-1065.
16. Tomasello M, Farrar MJ. Joint attention and early lan-
guage. Child Dev. 1986;57:1454-1463.
17. Vygotsky LS. Mind in Society: The Development of
Higher Psychological Processes. Cambridge, MA:
Harvard University Press; 1978.
18. American Academy of Pediatrics, AAP Council on
Children with Disabilities Autism Subcommittee.
Understanding Autism Spectrum Disorders. Elk Grove
Village, IL: American Academy of Pediatrics; 2012.
19. American Academy of Pediatrics. Autism: Caring for
Children With Autism Spectrum Disorders. A Resource
Toolkit for Clinicians. 2nd ed. Elk Grove Village, IL:
American Academy of Pediatrics; 2012.
20. American Academy of Pediatrics. Autism Spectrum
Disorders: What Every Parent Needs to Know. Elk Grove
Village, IL: American Academy of Pediatrics; 2012.