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Feasibility of delivering parent-implemented NDBI interventions in low-resource regions: a pilot randomized controlled study

Authors:

Abstract

Background This implementation feasibility study was conducted to determine whether an evidence-based parent-implemented distance-learning intervention model for young children at high likelihood of having ASD could be implemented at fidelity by Part C community providers and by parents in low-resource communities. Methods The study used a community-academic partnership model to adapt an evidence-based intervention tested in the current pilot trial involving randomization by agency in four states and enrollment of 35 coaches and 34 parent-family dyads. After baseline data were gathered, providers in the experimental group received 12–15 h of training while control providers received six webinars on early development. Providers delivered 6 months of intervention with children-families, concluding with data collection. Regression analyses were used to model outcomes of the coach behaviors, the parent fidelity ratings, and child outcomes. Results A block design model-building approach was used to test the null model followed by the inclusion of group as a predictor, and finally the inclusion of the planned covariates. Model fit was examined using changes in R ² and F -statistic. As hypothesized, results demonstrated significant gains in (1) experimental provider fidelity of coaching implementation compared to the control group; and (2) experimental parent fidelity of implementation compared to the control group. There were no significant differences between groups on child developmental scores. Conclusions Even though the experimental parent group averaged less than 30 min of intervention weekly with providers in the 6 months, both providers and parents demonstrated statistically significant gains on the fidelity of implementation scores with moderate effect sizes compared to control groups. Since child changes in parent-mediated models are dependent upon the parents’ ability to deliver the intervention, and since parent delivery is dependent upon providers who are coaching the parents, these results demonstrated that two of these three links of the chain were positively affected by the experimental implementation model. However, a lack of significant differences in child group gains suggests that further work is needed on this model. Factors to consider include the amount of contact with the provider, the amount of practice children experience, the amount of contact both providers and parents spend on training materials, and motivational strategies for parents, among others. Trial registration Registry of Efficacy and Effectiveness Studies: #4360, registered 1xx, October, 2020 – Retrospectively registered, https://sreereg.icpsr.umich.edu/sreereg/
Rogersetal.
Journal of Neurodevelopmental Disorders (2022) 14:3
https://doi.org/10.1186/s11689-021-09410-0
RESEARCH
Feasibility ofdelivering parent-implemented
NDBI interventions inlow-resource regions:
apilot randomized controlled study
Sally J. Rogers1* , Aubyn Stahmer1, Meagan Talbott1, Gregory Young1, Elizabeth Fuller1, Melanie Pellecchia2,
Angela Barber3 and Elizabeth Griffith4
Abstract
Background: This implementation feasibility study was conducted to determine whether an evidence-based parent-
implemented distance-learning intervention model for young children at high likelihood of having ASD could be
implemented at fidelity by Part C community providers and by parents in low-resource communities.
Methods: The study used a community-academic partnership model to adapt an evidence-based intervention
tested in the current pilot trial involving randomization by agency in four states and enrollment of 35 coaches and 34
parent-family dyads. After baseline data were gathered, providers in the experimental group received 12–15 h of train-
ing while control providers received six webinars on early development. Providers delivered 6 months of intervention
with children-families, concluding with data collection. Regression analyses were used to model outcomes of the
coach behaviors, the parent fidelity ratings, and child outcomes.
Results: A block design model-building approach was used to test the null model followed by the inclusion of group
as a predictor, and finally the inclusion of the planned covariates. Model fit was examined using changes in R2 and
F-statistic. As hypothesized, results demonstrated significant gains in (1) experimental provider fidelity of coaching
implementation compared to the control group; and (2) experimental parent fidelity of implementation compared to
the control group. There were no significant differences between groups on child developmental scores.
Conclusions: Even though the experimental parent group averaged less than 30 min of intervention weekly with
providers in the 6 months, both providers and parents demonstrated statistically significant gains on the fidelity of
implementation scores with moderate effect sizes compared to control groups. Since child changes in parent-medi-
ated models are dependent upon the parents’ ability to deliver the intervention, and since parent delivery is depend-
ent upon providers who are coaching the parents, these results demonstrated that two of these three links of the
chain were positively affected by the experimental implementation model. However, a lack of significant differences
in child group gains suggests that further work is needed on this model. Factors to consider include the amount of
contact with the provider, the amount of practice children experience, the amount of contact both providers and
parents spend on training materials, and motivational strategies for parents, among others.
Trial registration: Registry of Efficacy and Effectiveness Studies: #4360, registered 1xx, October, 2020 – Retrospec-
tively registered, https:// sreer eg. icpsr. umich. edu/ sreer eg/
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Open Access
*Correspondence: sjrogers@ucdavis.edu; sjrogers@ucdavis.edu
1 Department of Psychiatry Behavioral Sciences, MIND Institute, University
California Davis, Davis, USA
Full list of author information is available at the end of the article
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Page 2 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
Background
Specific interventions for young children with or at high
likelihood for autism spectrum disorders (ASD) demon-
strate powerful effects in reducing intellectual impair-
ment, improving social communication and language
development, and improving social skills when initi-
ated in early childhood [10, 11, 13, 30]. However, many
of these interventions are not implemented well within
community settings due to technical aspects of the
models, delivery intensity, and precision of intervention
methods. In fact, very few empirically supported models
for toddlers with ASD have demonstrated efficacy when
assessed via community delivery, and a recent paper
reported that children with ASD who receive interven-
tion in community settings have less favorable outcomes
than children who receive intervention in clinical/univer-
sity settings [19]. is might be because the community
systems that serve young children often involve low-
income and culturally diverse areas and interventions
have not been adapted to fit the needs of families in these
areas. ese characteristics, combined with low funding
rates, low service intensity, and staffing difficulties, make
it difficult to implement evidence-based practices (EBP)
at fidelity.
Part C, the public early intervention system for children
under age three in the USA is, by its public and noncat-
egorical nature, the most likely source of early interven-
tion (EI) for the nation’s young children with signs of
ASD. e Part C philosophy focuses on having providers
support parents to provide intervention for their child
during everyday activities. Children with ASD benefit
the most from interventions that include parents [13],
and parent participation in EI is predictive of long-term
outcomes [17]. Parent-implemented interventions lead
to positive changes in parent and child outcomes across
multiple interventions (e.g., [27]). Such studies, primar-
ily conducted in clinical research settings, have used a
multi-stage measurement approach in which (1) provider
coaching ability, (2) parent fidelity to the intervention,
and (3) child outcomes are all carefully measured. is
has led to an understanding that evidence-based coach-
ing models improve parent fidelity to the intervention,
and, in turn, child outcomes are linked to parent fidelity
to the intervention (e.g., [24, 26, 35, 44]).
However, too seldom do Part C providers use evidence-
based parent coaching methods. Part C providers tend to
provide direct intervention services to children [6], which
allows for little carryover into child daily life and does not
realize the intent of Part C services for family learning
[2]. e Part C providers in several locations in our study
and our community advisory boards told us that they
considered young children at high likelihood of ASD to
be the most difficult and discouraging children to serve,
due to their intense intervention needs, difficulty engag-
ing with the provider, and poor progress (personal com-
munications to SR and AS). Given the significant cost of
educating children with ASD [1] and the importance of
high-quality intervention at an early age for improving
child outcomes, children’s limited access to evidence-
based practices (EBP) in Part C EI is a major concern.
Recently, there have been some attempts to move evi-
dence-based, parent-implemented autism interventions
into public early intervention systems with some early
success [28, 35]. Researchers have partnered with com-
munity providers to train them to use parent coaching
strategies to teach parents Naturalistic Developmental
Behavioral Interventions (NDBI [31];) that fit the context
of the community [5]. ese interventions show prom-
ise for improving social communication outcomes in
children with high likelihood of having ASD when deliv-
ered by community-based early intervention providers;
however, samples are small and more data are needed.
In addition, few studies examining parent-implemented
interventions have focused on under-resourced commu-
nities [34].
For these reasons, we adapted an evidence-based
practice in collaboration with community stakeholders
study to address the needs of early intervention provid-
ers working with parents and their young children with
ASD. In order to improve access to evidence-based care,
the project targeted low-income sites that were quite dis-
tant from the research team, and all interaction was con-
ducted using distance learning technology. To increase
feasibility, training of local parent coaches involved self-
instruction via internet-based materials and 12–15 h of
distance group consultation from a research staff. ere
was no direct contact between researchers and commu-
nity providers, parents or children.
e study used a three-phase model, beginning with
input from community partners in six sites regard-
ing early intervention processes and needs. Phase Two
involved a component analysis of the parent model to
determine which of the strategies to emphasize, as well
as some pilot work to test the training and coaching
intervention methods. Phase ree, the current study,
involved a pilot controlled trial involving randomization
Keywords: Early intervention, ASD, Parent-implemented interventions, Parent coaching, Implementation research,
ESDM
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Page 3 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
by agency in four states and enrollment of 35 coaches
working in the Part C system and 34 parent-family dyads
described here. We worked with research community
collaboratives in six states (MT, AZ, CA, CO, PA, AL)
to adapt the Early Start Denver Model’s (ESDM) parent
coaching strategies for use in low-intensity settings with
Part C providers having limited experience with autism.
Each state team included a researcher familiar with early
intervention and parent coaching, a representative from
the state Part C service system, Part C providers and
agency administrators, and family members who had
participated in Part C with their autistic toddler. ese
site teams met with the research team regularly through
the development stages of the intervention to support
our multi-state needs assessment, assist with recruitment
and data interpretation and provide feedback on the
training modules and HIIYH modules. We used an itera-
tive process to develop our final product for this pilot test
that would be generalizable across multiple state systems.
ESDM is one of the very few comprehensive EI models
that have been validated and replicated in multiple pub-
lished, randomized trials (e.g., [8, 24, 26]). A recent meta-
analysis of 12 controlled ESDM studies found significant
effects of ESDM on cognition and language compared
to usual care groups, even though most of the studies
involved low-intensity (1 h per week) or group services
delivered by parents or professionals [11]. Multiple stud-
ies have examined the effects on parents and children
of parent-implemented ESDM (P-ESDM) and demon-
strated parent fidelity to the techniques and accelerated
child learning in language, imitation, and play [3841].
ESDM was collaboratively adapted for under-resourced
Part C communities by a multidisciplinary group of pro-
viders, funding agency representatives, parents, and
researchers who provided feedback after a review of
ESDM manuals and other written materials. Adaptations
involved greatly shortening and streamlining training
materials and providing them asynchronously via dis-
tance learning, simplifying and shortening procedures
for developing short-term intervention objectives and
progress monitoring tools, and creating video modules
that described and illustrated the key strategies for par-
ents to use with children through cartoons and parent-
child videos.
Additional adaptations addressed (1) community val-
ues (rural Colorado, rural Alabama, rural California,
Montana, Arizona, and urban Philadelphia); (2) the
limited time Part C providers have for learning, plan-
ning, and data collection; (3) the need to reach families
with attractive and practical brief audio-visual learn-
ing materials that could be accessed through their
phones; (4) the need to use a flipped classroom edu-
cational approach grounded in the principles of adult
learning for flexible provider training; (5) methods for
integrating ESDM approaches within the existing Part
C Individual Family Support Plan (IFSP) and delivery
approaches; and (6) the very limited service intensity
delivered in these communities (as low as one 1 h per
month). e resulting model was named the Commu-
nity ESDM, or C-ESDM.
We used an iterative process to develop both the
C-ESDM provider training approach and the parent
learning materials from three sources: (1) experimen-
tal data using component analysis to examine key com-
ponents of ESDM, (2) survey data from a multi-state,
multi-level survey aimed at better understanding Part C
services [2], and (3) ongoing discussions with our imple-
mentation teams. e component analysis indicated that
parents reached fidelity more easily in individual compo-
nents after learning all the key ESDM components and
integrating them into play activities; therefore all four
components were included in the training program. e
provider training program included methods of measur-
ing child, parent, and provider progress, provider train-
ing materials, online parent lessons, and materials. e
online materials, “Help is in Your Hands” (HIIYH; www.
helpi sinyo urhan ds. org), include four modules with 4 les-
sons per module focused on narrated video examples
of families using the strategies during daily routines at
home. Four modules cover the following components:
(1) Increasing Children’s Attention to People (Position-
ing; Following the leader; Finding and making attention
magnets; Child comfort zone); (2) Increasing Children’s
Communication (Talking bodies; Responding to child
body language; Gestures and sounds; Following and lead-
ing); (3) Creating Joint Activity Routines (Building Joint
Activities in four easy steps; Variations on the theme;
Joint activity routines without toys); and (4) theABCs
of learning (A = antecedents; B = behavior; C = Con-
sequences). HIIYH includes the core elements of ESDM
included in the parent coaching studies which align with
the 11 essential common elements shared across NDBIs
(Frost, Brian, Gengoux et al., 9). All provider training
activities and parent coaching materials were made avail-
able online and also covered during providers’ twice-
monthly 1-h interactive webinars.
e current study used a small, randomized trial to
test the feasibility and promise of the adapted model for
use with Part C providers and families in 4 of the 6 par-
ticipating states (AL; CA; CO; PA). Families had a young
child with social communication challenges considered
at high likelihood of a future autism diagnosis. e study
tested the effects of this low-intensity training approach
for Part C providers on three groups: (1) providers’ use of
parent coaching strategies, (2) parents’ use of interactive
strategies, and (3) toddlers’ developmental skills.
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Page 4 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
Methods
e current pilot study examined the effectiveness of
C-ESDM delivered in Part C systems across 4 states: Ala-
bama, California, Colorado, and Pennsylvania. Recruit-
ment began at the agency level, with providers nested
within agencies, and families recruited from participat-
ing providers’ caseloads. Eligible agencies served children
0–3 through their state’s Part C Program. Agencies were
recruited via outreach from university partners in each
state. Video calls to describe study details were sched-
uled with all potential providers at an agency. Interested
providers were subsequently contacted by study staff and
formally screened via phone or video call. Each agency
was randomized to either the Community Early Start
Denver Model (C-ESDM) or an active comparison group
(All About Young Children; AAYC) immediately upon
enrollment, using a matched pair, cluster-randomization
procedure. After enrolling, providers recruited eligible
families from their existing caseload, using a study flyer
and recruitment video to provide interested families with
study details. Interested families were contacted by the
study coordinator via phone and eligible families were
consented and enrolled electronically. e current study
focuses on evaluating the impact of C-ESDM at 3 lev-
els: providers’ use of parent coaching strategies, parents’
use of interactive strategies, and toddlers’ developmental
level.
Participants
irteen agencies, 35 providers (all female), and 34 fami-
lies enrolled in the project. Seven agencies (14 providers)
were randomized to the C-ESDM and six agencies (17
providers) were randomized to the comparison group.
Agencies were randomized at the time the agency leader
enrolled in the study. Provider and family group assign-
ments were nested within agency assignment. Each state
had at least one agency in each condition. e result-
ing distribution of providers by state and condition
was as follows: Comparison: AL = 2, CA = 2, CO = 8,
PA = 4; C-ESDM: AL = 4, CA = 6, CO = 3, PA = 6).
One agency (with two providers from PA) and an addi-
tional provider at a different agency (from AL) withdrew
after assignment to the comparison group before pro-
viding any demographic or intake data. One provider
(C-ESDM from PA) provided intake and demographic
data but withdrew before attending any webinars. One
provider (comparison group from PA) withdrew after
completing demographic information but did not pro-
vide an intake session. In all, this left a final sample of
32 providers reporting demographic information and 31
providers with baseline fidelity scores. (See Table1 for
demographic information about providers.) No provid-
ers in either the experimental or comparison groups had
previously received any ESDM training.
Agency eligibility criteria included (1) agency receives
some Part C funding; (2) agency serves low-income fami-
lies (defined as below the state mean income; (3) agency
provides low-intensity services (fewer than 15 h per
week); and (4) agency has at least two providers with-
out previous ESDM training willing to participate in the
study.
Provider eligibility criteria included (1) employed as
an early interventionist at a participating agency; and
(2) no previous training in ESDM; serving or will serve
Table 1 Provider demographic characteristics, by state and group, shown as percentages of the group
There are no signicant dierences between treatment groups on any of these variables
Measure State Treatment group
AL (n = 4) CA (n = 8) CO (n = 11) PA (n = 9) AAYC (n = 14) CESDM (n = 18)
Provider race/ethnicity (%)
White 50 75 100.0 100 92.9 83.3
Black/African-American 50 – 11.1
Prefer not to answer 25 7.1 5.6
Hispanic or Latino 25 14.3
Highest education (%)
Associate 9.1 11.1 14.3
Bachelor 25 9.1 33.3 21.4 16.7
Master 100 62.5 81.8 55.6 64.3 77.8
Doctorate 12.5 – 5.6
Typical intensity of services provided
1–2 h per month 100 50 44.4
3–5 h per month 50 90.9 100 85.7 55.6
More than 5 h per month 9.1 14.2
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Page 5 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
one or more children with social-communication delays
with high likelihood of ASD. Providers’ formal titles var-
ied, but most were credentialed professionals working as
early educators (early childhood special educators, spe-
cial instructors, or developmental interventionists) or
allied health specialists (speech-language pathologists,
physical and occupational therapists).
Inclusion criteria for families and children were (1)
child chronological age between 12 and 30 months at
study intake; (2) child’s provider is concerned about
possible ASD and child meets risk criteria on either
the Modified Checklist for Autism in Toddlers, Revised
(M-CHAT-R [20];) or Infant-Toddler Checklist (ITC
[43];); (3) child is ambulatory with unimpaired hand
use; (4) child does not have significant motor, medical,
vision, or hearing problems or genetic conditions asso-
ciated with ASD; (5) child receives fewer than 10 hours
per week of early intervention (including the EI agency
and all other intervention sources such as applied behav-
ior analysis); (6) English is used at least 60% of the time
in the home and parent is able to consent and complete
questionnaires in English; (7) participating caregiver is
child’s legal guardian; (8) participating caregiver is will-
ing to attend scheduled intervention sessions with par-
ticipating provider; (9) participating caregiver has not
previously received ASD-specific parent coaching; and
(10) family income reported during initial telephone
screen was below the state means as reported on federal
website https:// aspe. hhs. gov/ pover ty- guide lines.
Recruitment
Providers and agency leaders supported recruitment by
providing a flyer and a link to a video to potentially eligi-
ble families. All agencies had very few children that met
eligibility criteria; therefore leaders tried to link poten-
tially eligible children with participating providers as they
were referred to the agency. To reduce bias, providers
and leaders gave all potentially eligible families informa-
tion about the study. In response to recruitment chal-
lenges, eligibility criteria for children and families were
changed midway through the recruitment phase of the
study in these ways: (1) allowing increased family income
(in the last year we removed all income restrictions), (2)
removal of requirement involving (1) provider concerns
about ASD risk and (2) removal of the requirement that
children meet all ASD risk criteria on a screening tool.
Even so, enrolled children did in fact show ASD risk on
screeners. Four children were screened using the ITC;
all met “concerns” criteria. Twenty-five of the remaining
children were screened using the M-CHAT-R and scored
with “high” (n = 8) or “moderate” (n = 6) ASD concerns.
e remaining five children were not formally screened
following the removal of this requirement as described
above. Half of the children were from ethnic or racial
minority groups. ere were no statistically significant
differences between the intervention and comparison
groups related to sociodemographics (proportion non-
white, maternal education greater than high school, or
income of $50,000 or more). Demographic characteris-
tics of all enrolled parents and children in each state are
presented in Table2.
Providers were asked to recommend all potentially
eligible families on their caseload, beginning at the time
they enrolled in the study and through the end of their
training period. us, families entered the study at vari-
ous points in the provider training, whenever an eligible
family was added to their caseload and chose to enroll.
e 34 enrolled families were spread across 22 individual
providers, with the number of enrolled children per pro-
vider ranging from 1 to 4. Providers in either group were
free to use the materials and methods provided in the
training (described below) with any family on their case-
load, even if that family did not enroll.
Procedures
Training procedures
Intervention group e C-ESDM intervention learn-
ing consisted of five components: (1) providers’ real-time
webinars with trained ESDM parent coaches recorded
and available for self-study, (2) providers’ group learning
through video reviews with the trained coach, (3) parents’
real-time learning during parent coaching with their pro-
viders, (4) parents’ independent learning through HIIYH
videos and materials including the parent manual [22,
25], which were given to the families and providers, and
(5) child learning through interactions with their parents
within everyday activities.
Core learning materials:
1. Parent manual “An Early Start for your Child with
Autism” [22, 25].
2. Website “Help Is in Your Hands” with its narratives,
videos, and exercises (www. helpi sinyo urhan ds. org).
3. Provider video materials, training sessions, and tools
on the Help Is in Your Hand website.
4. Parent Refrigerator Lists, which cover the main topic
of each week’s intervention session.
5. P-ESDM Parent Fidelity of Implementation Scale.
6. P-ESDM Coaching Fidelity of Implementation Scale.
7. Coach’s list of child objectives from the child’s IFSP
broken down into 4–5 learning steps.
8. Child session data sheet capturing progress through
objectives and learning steps.
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Page 6 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
C-ESDM providers received access to learning mate-
rials, webinars, and video coaching via telehealth that
described core coaching techniques and how to apply
them to coach parents to implement the C-ESDM strat-
egies. ESDM content knowledge was delivered through
the provision of the published parent manuals to all pro-
viders and through the HIYYH videos to both providers
and parents such that providers did not require content
expertise. e providers’ four sessions of group training
included methods of measuring child, parent, and pro-
vider progress, review of the provider ESDM training
materials, and online parent lessons and materials. Prior
to beginning training, providers completed brief online
knowledge assessments related to the understanding of
adult learning principles, early signs of autism, and par-
ent coaching strategies. If they did not receive a score
of 80% or better, they reviewed brief videos introducing
these concepts prior to beginning training.
Providers initially attended four weekly telehealth group
meetings that included a concept presentation, video
examples, and discussions with 3-4 other providers from
their agency. Meeting leaders were certified ESDM train-
ers who had developed the C-ESDM procedures and
materials. Session topics included: (1) an introduction to
HIIYH and Parent Coaching; (2) Parent Coaching struc-
ture and strategies; (3) building specific treatment objec-
tives from IFSP goals and simple tracking methods for
child progress; and (4) supporting parent learning. ESDM
intervention knowledge was gained through a review of
the ESDM manual and the HIIYH videos. Additional
training content mirrored usual parent coach training
with an emphasis on developing measurable goals base
on the child’s IFSP and simplification of data and fidelity
tracking. Each meeting included both didactic informa-
tion as well as interactive activities related to the topic.
Between-session activities included practice using mate-
rials provided (e.g., coding intervention fidelity; practic-
ing with data collection; HIIYH video content) with a
family on their caseload.
Once providers completed the first of their initial four
weekly content-based webinars, they could begin to use
HIIYH with an enrolled family. After the first four webi-
nars, they then met twice monthly for a small group
video review with other providers and discussion of the
work with their assigned family with their training coach
for 2 additional months. ese sessions were reduced to
once monthly for the final 3 months (6 months of total
training). e logic for allowing them to begin with fami-
lies before they had completed all training was to allow
for the providers to practice with their assigned children
week by week (and discuss their experiences in the group
sessions) as each new concept was taught. e multi-
modal adult learning approach thus involves didactic
learning, video models, direct experiential learning, self-
reflection and evaluation, group feedback, and feedback
involving the videos from their family sessions. While it
would have been ideal for providers to practice with one
child and then have data collected from another, there
Table 2 Child and family participant demographic characteristics, by state and group
There are no signicant dierences between state or treatment groups on any variable
Measure State Treatment group
AL (n = 6) CA (n = 8) CO (n = 13) PA (n = 7) AAYC (n = 14) CESDM (n = 20)
Child age at enrollment (M, SD) 25.02, 4.58 24.98, 4.42 26.84, 3.77 25.51, 2.85 26.8, 2.35 25.11, 4.52
Child sex (% male) 83.3 37.5 69.2 100 71.4 70.0
Child race/ethnicity (%)
White 16.7 100 76.9 28.6 64.3 60.0
Black/African-American 83.3 15.4 42.9 28.6 30.0
Asian 14.3 – 5.0
Multiple 7.7 14.3 7.1 5.0
Hispanic or Latino 25 23.1 42.9 28.6 20.0
Maternal education (%)
High school/GED/vocational 16.7 62.5 23.1 57.1 42.9 35.0
Some college 16.7 25 46.2 28.6 28.6 35.0
College degree 16.7 30.8 14.3 28.6 10.0
Graduate degree 50 12.5 20.0
Family income (M, SD) 43,966; 26,472
Range: 8800–
70000
58,875; 31,534
Range: 0–96,000 61,769; 42,528
Range: 20,000–
170,000
26,857; 18,685
Range: 8,000–
58,000
52,357;
45,771 Range:
0–170,000
49,640; 26,504
Range: 8800–
96,000
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Page 7 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
were not enough eligible children in their caseloads or
time in their work schedules to allow for this. Enrolled
parents received access to the HIIYH parent materials
and the ESDM parent manual; providers could use any
of the video and written materials and strategies during
their sessions with enrolled families. Intervention ses-
sions continued for 6 months for all children on whatever
schedule the interventionist and agency had established
for the family (this ranged from planned 1 time monthly
to 1 time weekly depending on the state and agency).
Comparison group e comparison group received
directions to access publicly available online modules
(All About Young Children: AAYC, CA Dept Ed, 2013;
allab outyo ungch ildren. org)of high quality covering early
developmental milestones from birth to 60 months in 5
domains: (1) social-emotional development, (2) language
development and literacy; (3) number sense; (4) physical
development; and (5) approaches to learning. e website
included videos with examples of strategies to promote
child development that could be viewed by providers and
parents. Providers in the comparison group met monthly
(for 6 months) via telehealth with a leader (developmen-
tal psychology PhD and early childhood specialist) who
reviewed the materials covered and provided a struc-
tured discussion on each topic but did not offer concrete
suggestions for either parent coaching strategies or child
interaction strategies. Providers could use the materials
in their Part C intervention in any way they wished.
Assessment procedures
Provider assessments Providers completed online ques-
tionnaires and session videos at study enrollment and
exit (6 months later, or whenever their final family com-
pleted intervention). e initial, or baseline, provider
video taken at enrollment was a session with a consented
Part C family who was receiving ongoing intervention
with that provider, in order to sample the provider’s cur-
rent parent-coaching strategies. After training and initia-
tion of intervention with the project children enrolled in
experimental or comparison groups, providers recorded
each intervention session on a project-supplied iPad and
uploaded all the session videos to a secure, HIPAA-com-
pliant website. e final video uploaded by each provider
was selected as their “exit”, or post-intervention video.
Note that families/children in provider initial videos were
not necessarily the same families/children that providers
worked with and filmed for the exit videos. Raters naïve
to timepoint coded provider fidelity of coaching imple-
mentation (FOI) principles from each intake and exit
video for both groups of providers. Analysis of provider
change in FOI focused on the initial and the final avail-
able videos of the provider. e mean number of weeks
between the provider initial and final videos was 17.23
weeks (SD 7.03), which did not differ between the groups
(p > .49). To track the number of hours delivered, provid-
ers completed weekly online questionnaires indicating
whether a session was scheduled with each family and
whether it took place as scheduled.
Parent and child assessments We reached out to our
university partners (those participating in the research
community partnership that developed C-ESDM) in each
state for help with child assessments and recruited seven
assessors (all female), including graduate students (n =
1) and early intervention professionals (n = 6) working
in their local communities. ese assessors were hired
as contractors (not participants) for the project and were
naïve to provider group assignment. e study team sent
each assessor a kit with a recording device, forms, and
necessary toys and stimuli to complete the assessments.
e child assessments included two primary compo-
nents: (1) A parent-child interaction and (2) the assessor-
administered ESDM Infant-Toddler Curriculum Check-
list (IT-CC [23]; described below). For the parent-child
interaction, the assessor asked the parent to play with
their child in their typical way. ey were asked first to
play without any objects, and after that, they were asked
to play with their child with a toy either from those at
home or from a selection of toys the assessor brought.
e parent-child interaction lasted up to 20 min. e
assessor then carried out the IT-CC with the child,
described in detail below. Each assessment was digitally
recorded for later scoring of parent and child behaviors
by naïve university coders. In addition to these live inter-
actions, some parent measures were completed online by
the parents. For the very few parents who did not com-
plete the online measures, the assessors provided the sur-
veys as paper and pencil measures.
Assessor training procedures included one initial tel-
ehealth training with a project member on the assess-
ment procedures. Providers then submitted practice
tapes for feedback on administration and scoring until
they reached fidelity benchmarks specified for the IT-CC.
Following this training, assessors began seeing families.
Family contact information was provided to assessors
via secure, HIPAA-compliant messaging, and assessors
contacted families directly to schedule at a time that was
mutually convenient. Assessments were scheduled in
families’ homes and lasted approximately 1.5 h. Assessors
scored the IT-CC live at the time of assessment adminis-
tration and submitted copies of their scores and videos
of the assessment sessions via a secure website so that
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Page 8 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
their scores could be checked for accuracy by a trained
member of the research team. If an item was missing or
incomplete, the assessor was contacted directly by the
Project Coordinator to clarify.
e entire process of recruiting and training providers
and assessors, identifying and enrolling eligible families
and children, conducting the intervention, and gather-
ing final data took approximately 1 year. Agencies were
enrolled in rolling fashion and all the activities related to
conducting the intervention study other than coding and
data analysis were completed in a 2-year period.
Measures
Infant‑Toddler Checklist (ITC [43];)
e ITC is a 25-item checklist that assesses infants’ lan-
guage, communication, play skills, and probes for parent
concern. Empirically derived cut-offs for concerns range
are available for infants 6 through 24 months. e ITC
was used as an eligibility screener.
Modied Checklist forAutism, Revised (M‑CHAT‑R, [20])
A 20-item checklist designed to screen for ASD. It pro-
vides empirically derived cut-offs for concern and referral
recommendations. e M-Chat, including the follow-up
interview, was used as an eligibility screener.
ESDM Fidelity Checklist [21]
is tool was used to assess parent use of ESDM prac-
tices in play with their child. e ESDM Fidelity Check-
list consists of 13 items that are each given a score
between 1 and 5, with 5 representing more frequent and
higher quality use of each ESDM strategy and a total
possible range of scores from 12 to 60. e items are (a)
management of child attention; (b) ABC teaching format;
(c) instructional techniques; (d) Modulating child affect/
arousal; (e) management of unwanted behavior; (f) use
of turn-taking/dyadic engagement; (g) child motivation
is optimized; (h) adult use of positive affect; i. adult sen-
sitivity and responsivity; (j) multiple varied communica-
tive functions; (k) adult language; (l) joint activity and
elaboration; and (m) transition between activities (this
item was not scored for this study). Trained coders naïve
to group and timepoint scored parents on the Fidelity
Checklist from the parent-child interaction filmed at the
assessments. Coders used this tool to score the play activ-
ity without toys and the play activity with toys that the
parent carried out during the assessment. A play activity
had to last a minimum of 1 min to be coded. Scores were
averaged across both activities for an average total parent
fidelity of implementation (FOI) rating. Twenty-nine per-
cent of videos were independently coded by both coders
for reliability. Intraclass correlation coefficients indicated
high reliability: ICC = 0.85 (CI: 0.62–0.95).
Coaching Practices Rating Scale (CPRS, [29])
A modified version of the Coaching Practices Rating
Scale was used to evaluate provider fidelity of implemen-
tation (FOI). Each of the 13 items was rated on a binary
scale of present or absent, and these scores were summed
for a total of 13 possible points. ese behaviors were
rated by two coders naive to timepoint and group assign-
ment. Twenty percent of videos were independently
coded by both coders for reliability. Intraclass correlation
coefficients indicated high reliability: ICC = 0.92 (CI:
0.17–0.98).
ESDM Infant‑Toddler Curriculum Checklist (IT‑CC [23];)
e IT-CC is a criterion-based measure of early devel-
opment that spans the developmental range from 8 to
30 months and is adapted from the Early Start Denver
Model Curriculum Checklist (ESDM [21];). e IT-CC
consists of 136 items organized in 9 developmental
domains: Gestures Understood, Words Understood, Ges-
tures Produced, Words Produced, Joint Attention, Dyadic
Engagement, Imitation, Cognition, and Play Skills. Items
are assessed during semi-structured play- and routine-
based interactions carried out over approximately 90
min using a standard set of play materials. Each IT-CC
item is rated as “acquired”, “partially acquired”, or “unable
or unwilling,” based on child behavior during play-based
interactions throughout the entire assessment, as well as
parent report. On the IT-CC, a score of “acquired” on a
given item represents a defined mastery level of that skill
and is credited. No other score receives credit. e Cog-
nitive domain was not utilized during the current study
after pilot testing indicated the additional required mate-
rials were too burdensome for assessors to carry into
families’ homes. us, final scores for this study consist
of one point per ‘acquired’ item, for a total score out of
124 possible points, expressed as a raw score (IT-CC
Total Score). A team of gold-standard coders at the pri-
mary university site, naive to timepoint and group assign-
ment, scored the IT-CC from videos. (is team was not
the same team to code the parent ESDM fidelity vid-
eos.)eir scores were used for all analyses, rather than
the home assessors’ scores, because of the potential for
assessors to become unblinded to family/provider group
assignment. Intraclass correlation coefficients of asses-
sors and gold standard coding team indicated high reli-
ability: ICC = 0.93 (CI: 0. 89 to 0.95).
Family implementation survey
Upon exit from the study, caregivers completed an
implementation survey that asked questions about the
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Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
feasibility/acceptability of the intervention skills that
were taught to them. is survey has been adapted from
the literature (Haug, Shopshire, Gruber, & Guydish, 14;
Ingersoll & Dvortcsak, 15) and measures the constructs
of treatment acceptability, appropriateness, adoption,
and feasibility on a Likert scale from 1 = strongly disa-
gree to 5 = strongly agree.
Analysis
Nine of the 32 families with baseline curriculum scores
withdrew sometime after the initial baseline measures
and before the final home assessments were completed.
Of the three who withdrew in the comparison group, one
withdrew due to family stress, one moved out of state,
and one was lost to follow-up. Of the 6 who withdrew in
the C-ESDM group, two discontinued EI to initiate inten-
sive services, one was moved off the provider’s caseload,
one was lost to follow-up, and two were paired with pro-
viders who withdrew. is left a final sample of 23 fami-
lies with outcome data, in comparison to 34 families who
provided data from the initial visit which are included in
the demographic analyses and descriptions from intake.
A series of regression analyses were used to model
outcomes of the provider FOI coaching scores, the par-
ent FOI to ESDM scores, and child total IT-CC scores.
Preliminary analyses revealed that there were no site dif-
ferences on intake variables using all enrolled providers
and families/children. (p 0.06). A nested model-build-
ing approach was used to test the null model (accounting
only for pretest), followed by the inclusion of group as a
predictor to address the primary research question, fol-
lowed by the inclusion of changes in parent ESDM fidel-
ity, the only planned covariate, and finally the inclusion of
any additional covariates. Variables that were significant
predictors of outcome were retained in the model. e
significance of included variables was examined using
changes in R2 and the F-statistic.
e first model tested the impact of the C-ESDM train-
ing on the outcome of coaching behaviors. e provid-
ers’ initial level of Coaching Practices fidelity and group
assignment were included, in that order, to understand
the effect of group assignment on provider fidelity of
implementation. e second model tested the impact
of the C-ESDM intervention on parent ESDM fidel-
ity. e parent’s initial level of ESDM fidelity of imple-
mentation and group assignment were included, in that
order, to understand the effect of group assignment on
parent ESDM fidelity. e third model tested the effect
of change in the parent ESDM fidelity on child IT-CC
scores. e child’s pretest score, group assignment, and
changes in parent ESDM fidelity, the planned covari-
ate, were included in the model in that order, to under-
stand the effect of group assignment and the possible
contribution of changes in the changes in parent ESDM
fidelity on child outcomes. All interaction terms between
pretest variables and group assignment were examined.
All statistical analyses were completed using SPSS Statis-
tics V. 26.
Results
Providers in both conditions attended an average of
78.36% of possible webinars/coaching contacts, which did
not differ by group (t(29) = 0.86, p = 0.93). is trans-
lated to a mean of 9.71 h of webinar training/supervision
sessions attended (SD = 2.11) by the C-ESDM group and
5.71 h (SD = .47) attended by the comparison group pro-
viders. Provider-reported weekly session attendance data
indicated no group differences in the number or propor-
tion of family sessions completed (sessions completed:
MeanC-ESDM = 11.09, SDC-ESDM = 5.99, Meancomparison =
14.25, SDcomparison = 5.68, t(15.72) = 1.71, p = 0.26; per-
cent sessions attended: MeanC-ESDM = 54.08%, SDC-ESDM
= 20.28, Meancomparison = 64.33, % SDcomparison = 12.66,
t(16.73) = 1.35, p = 0.19).
Provider FOI outcomes
e first of the regression analyses of coaches’ FOI
showed that the initial FOI coaching rating was not
significantly related to exit FOI (β = 0.24, se = 0.27,
p = 0.38). To test the hypothesis that inclusion in the
C-ESDM intervention would result in higher coaching
FOI scores, group was entered into the null model. Par-
ticipation in the C-ESDM group predicted a significant
increase in providers’ coaching FOI compared to the con-
trol group (β = 4.30, se = 1.40, p = 0.007), with a sig-
nificant improvement in model fit (R2 change = 0.34, F =
9.39, p = 0.007). Observed means and standard errors for
three primary outcome variables are shown in Table3.
Table 3 Mean (SE) of outcome variables at initial and exit
assessments
ANOVAs showed no signicant dierences between groups at intake (p0.24)
C-ESDM Comparison (AAYC)
Pre Post Pre Post
Number of
families n = 20 n = 13 n = 12 n = 10
Number of pro-
viders n = 18 n = 12 n = 13 n = 8
Coaching score 4.83 (0.62) 7.67 (0.74) 3.54 (0.93) 3.25 (1.20)
Parent fidelity 3.24 (0.12) 3.66 (0.15) 3.21 (0.12) 3.15 (0.14)
Child IT-CC total
score 41.40 (5.45) 59.85 (9.63) 44.75 (7.60) 62.50 (10.27)
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Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
Parent FOI outcomes
e C-ESDM parent group attended on average 11.09
sessions (sd.5.99), which was 54.08% of scheduled ses-
sions (SD 20.28%), and the comparison group attended
on average 14.25 (SD = 5.68) sessions, 64.33% (SD =
12.66%) of scheduled sessions. e groups did not dif-
fer significantly on number of sessions (t = 1.71, df =
15.72, p = 0.26) or percentage of scheduled sessions (t =
1.35, df = 16.73, p = 0.19). e results of this second set
of regression analyses showed that pretest parent ESDM
FOI was significantly related to posttest FOI (β = 0.48,
se = 0.22, p = 0.04), indicating that parents with higher
ESDM FOI scores at the start of intervention (their inter-
action skills at baseline) also had higher scores at the end
of the intervention, and vice versa. To test the hypothesis
that inclusion in the C-ESDM intervention would result
in higher parent ESDM FOI ratings, group was entered
into the null model. Participation in the C-ESDM group
predicted a significant increase in parent ESDM FOI
compared to the control group (β = 0.520, se = 0.20, p
= 0.02), with a significant improvement in model fit (R2
change = 0.19, F = 6.40, p = 0.02).
Family implementation survey results
Analysis of parent implementation ratings measuring
the constructs of treatment acceptability, appropriate-
ness, adoption, and feasibility revealed no differences
between groups on the overall ratings: MeanC-ESDM =
3.47, SDC-ESDM = 0.75, Meancomparison = 3.19 SDcomparison
= 0.86, t(15.91) = 0.80, p = 0.43) and on any of the
scales. Parents rated both the control and C-ESDM inter-
ventions as moderately acceptable (M = 3.31 and 3.35
respectively), appropriate (M = 3.11 and 3.49), feasi-
ble (M = 3.28 and 3.58), and adoptable (M = 3.00 and
3.08 respectively). All subscales had standard deviations
around 1.0.
Child outcomes
e results of the third set of regression analyses indi-
cated that the initial IT-CC total score was significantly
related to the exit score (β = 1.16, se = 0.14, p < 0.01). To
test the hypothesis that inclusion in the C-ESDM inter-
vention would result in higher child scores, group was
entered into the null model. Participation in the C-ESDM
group did not result in a significantly greater change in
child scores compared to the comparison group (β =
1.17, se = 7.32, p = 0.87).Changes in parent ESDM FOI
scores across the intervention period, the planned covari-
ate, were not related to child outcomes (β = 5.49, se =
6.48, p = 0.40). Interactions between initial variable data
and group assignment were examined for all analyses;
none of these interactions were significant.
Discussion
Brief summary
is implementation feasibility study used a research-
community partnership approach [5] and was designed
and executed in order to answer three questions about
an evidence-based parent-implemented distance-learn-
ing intervention model for low-income young children
with or at high likelihood of having ASD. e questions
were (1) could it be learned and implemented at fidelity
by community providers after brief group training; (2)
could community providers coach parents in ways that
effectively transmitted evidence-based skills as measured
by the fidelity of implementation measures, in an average
of one contact per week or less; and (3) would children
of parents receiving the parent coaching model demon-
strate positive benefits in comparison to children whose
parents received information on child development only.
e development of the intervention used a three-phase
model, beginning with input from community partners
in six sites. Phase two involved a component analysis of
the parent model to determine which of the strategies to
emphasize and some pilot work to test the training and
coaching intervention methods. Phase three involved this
pilot-controlled trial involving randomization by agency
in four states and enrollment of 35 coaches working in
the Part C system and 34 parent-family dyads of whom
50% were from under-represented ethic/racial groups.
Families of qualifying children (based on social-com-
municative delays and ASD risk) were enrolled by their
EI providers and initial baseline data on provider coach-
ing, parent-child interactions, and child development
were gathered. Providers in the experimental group then
received as much as 12–15 h of telehealth training via
webinars, group sessions with direct feedback, and asyn-
chronous self-instructional materials, during which they
initiated intervention with enrolled families, as well as
twice-monthly group video review sessions via telehealth.
Comparison group providers received six webinars on
various aspects of early development followed by initia-
tion of intervention with children and families.
After approximately 6 months of intervention at what-
ever schedule the agency typically delivered (ranged
from 2 h per week to 1 h per month), video measures of
provider interactions with the dyad and videos of par-
ent interactions with child were collected again as was
developmental information on children, collected by a
naïve evaluator. Results demonstrated significant gains in
fidelity to the coaching model of providers in the experi-
mental group compared to those in the control group.
Results also demonstrated significant gains in fidelity to
the intervention strategies of parents in the experimen-
tal groups compared to those in the comparison group,
supporting the primary and secondary hypotheses of
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Page 11 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
the study. Gains in provider coaching fidelity were not
related to their baseline coaching scores; however, gains
in parent intervention fidelity were related to their base-
line fidelity scores. ere were no significant differences
between groups in child developmental scores. Parents
in the C-ESDM group did not report the intervention to
be less feasible to use, less acceptable, less appropriate,
or less adoptable than the community standard interven-
tion, which placed far less responsibility on parents dur-
ing session than did the experimental intervention.
Implications
is study focused on adaptation of a well-tested inter-
vention to fit the needs of public agencies, providers, and
families in four low-income areas across the country,
chosen because these settings have very limited services
and the families, many of whom are from under-repre-
sented groups, often face many difficulties in accessing
high quality intervention for their young children at risk
for ASD. e sites involved both urban and rural settings
in locations where neither intensive services for young
children with ASD, nor expertise in early ASD interven-
tion, were available.
Involvement of community-academic partnerships in
various sites allowed for needed guidance of the research
team about the needs, strengths, values and priorities of
providers and families in each region. Use of distance
learning and self-instructional learning activities were
necessary because of: (1) the very limited time allowed
by agencies for provider training, (2) the geographic dis-
tances involved, and (3) the need to contain costs and
develop a method that had sufficient reach to the families
and providers in these low-resource areas. ese three
challenges highlighted several of the novel features of this
study, in addition to three more: characteristics involving
low-income families in low-income regions, use of tele-
health technology for provider training, and lack of any
direct contact between the study team and providers or
families.
Providers in the C-ESDM group met in small groups
with a project coach 1 h every week for the first month
of the project, tapering off to once monthly by month six.
Community providers delivered all interventions with
parents and children; the project coaches never inter-
acted with the family, nor did they provide direct coach-
ing to the providers during sessions. To our knowledge,
other parent-mediated implementation studies have not
relied on local providers to implement the experimen-
tal intervention in low-resource settings, nor have they
relied on distance learning and such limited contact
to teach the intervention to the coaches. Even though
the research project coaches averaged less than 30 min
weekly in contact with the provider group over a 6-month
period, and no time at all with the parents, both provid-
ers and parents in the experimental group demonstrated
statistically significant gains with moderate effect sizes
compared to the comparison group. Since child changes
in parent -mediated models are dependent upon the par-
ents’ ability to deliver the intervention, and since parent
delivery is dependent upon providers who are coaching
the parents, these results demonstrated that both links of
the chain were positively affected by the implementation
model being tested here.
However, lack of child change as measured by exper-
imenter-administered measures and the moderate lev-
els of parent use of the intervention outside of sessions
suggests that further work is needed on this model.
Our group sizes were not large enough to analyze fac-
tors influencing child change and the small sample size
is a limitation in this study. Factors to consider in future
work on this model include amount of contact between
parent and provider, amount of practice children experi-
ence with parents, amount of parent time spent on learn-
ing and practicing between sessions, and motivational
strategies for parents. Parents found C-ESDM to be no
more complex or challenging to use than the commu-
nity intervention received by controls, but their ratings
of moderate feasibility/usability indicate a need for bet-
ter support for how to integrate strategies into daily rou-
tines. Additionally, providers were gaining comfort with
the intervention and parent coaching as they coached
parents, and we do not know at what point within the
study period the parents reached effective levels of FOI,
which may limit the amount of learning opportunities the
children are receiving during everyday activities.
Sufficient parent learning time arose as a concern.
One of the agencies provided only 1 h per month of
contact to children, and if illness, schedules, or holi-
days required cancelation, no make-up sessions were
provided. Given our own, and others’ findings regard-
ing weekly or bi-weekly parent-coaching visits [24, 26,
44], it is difficult to imagine that a parent could learn
to embed helpful strategies into natural routines and
maintain new learning for a young child with autism
symptoms with only 1 h per month of coaching and
support. However, the lack of measurable differences
in child measures is not an uncommon finding in these
kinds of studies. In general, parent-implemented inter-
vention results for young children with autism have
been mixed in terms of direct effects on immediate
changes in child outcomes [36]. Additionally, many
other NDBI community studies have examined thera-
pist-implemented intervention, which has been shown
to be more effective across interventions than parent-
implementation alone (Nahmias & Mandell, 18). us,
follow-up research is needed to determine what factors
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Page 12 of 14
Rogersetal. Journal of Neurodevelopmental Disorders (2022) 14:3
are necessary for changes in parent interaction strate-
gies to permeate child behavioral repertoires in com-
munity studies.
A recent replication of these methods, not yet pub-
lished, in British Columbia, found similar positive
results in provider and parent fidelity, as well as signifi-
cant positive changes in parent questionnaire measures,
though not standardized measures, of child progress
on multiple measures of development and symptoms
in the experimental group. Positive change measured
on standardized measures from a parent-mediated
intervention is a very high bar. Very few low-intensity
parent-mediated models have published direct positive
child effects as measured by standardized developmen-
tal measures (see [4, 7, 12, 16, 22, 25, 32]). However,
since the change in standard scores is widely consid-
ered the most rigorous evidence of child improvement,
and since many studies of intensive autism interven-
tion have shown that such change is possible, we find it
important to continue to strive for this outcome as well.
Conclusions
e contributions of this study involve (1) methods for
reaching providers and parents in distant, low-resource
areas, (2) a free public website of learning materials
for providers and families, (3) methods that resulted
in significant differences in coach and parent behavior
related to the intervention strategies, and (4) a low-
cost, brief, community training model. Until replication
of the C-ESDM model demonstrates positive child-
level findings, additional research is needed to further
develop and test this approach. However, the primary
method in this study—the use of distance technology
to transmit strategies successfully from existing effica-
cious models to community providers and to parents—
was both feasible and successful in this study and have
been well documented in the literature [3, 33, 3740,
42]. e use of distance learning methodology to sup-
port providers and parents to adopt key features of nat-
uralistic interventions for young children with autism
risk can be considered an evidence-based practice.
Abbreviations
NDBI: Naturalistic Developmental-Behavioral Intervention; ASD: Autism spec-
trum disorder; EI: Early intervention; EBP: Evidence-based practice; ESDM: Early
Start Denver Model; P-ESDM: Parent-implemented Early Start Denver Model;
IFSP: Individualized Family Service Plan; C-ESDM: Community Early Start
Denver Model; HIIYH: Help Is In Your Hands; AAYC : All About Young Children;
M-CHAT-R: Modified Checklist for Autism in Toddlers, Revised; ITC: Infant-Tod-
dler Checklist; IT-CC: Infant-Toddler Curriculum Checklist; HIPAA: Health Insur-
ance Portability Accountability Act; CPRS: Coaching Practices Rating Scale.
Acknowledgements
The authors wish to acknowledge the tremendous contributions of MaryKate
Miller to the management of this study, our community partners in Alabama,
California, Colorado, Montana, New Mexico, and Pennsylvania for their input
into the design and development of HIIYH, and the providers, children, and
families who participated in the study.
Authors’ contributions
SJR: contributed to the design of the study, provided training to the C-ESDM
providers, designed the HIIYH website materials, helped choose measures and
plan the analyses, and was the lead author on this paper. AS: contributed to
the design of the study, provided training to the C-ESDM providers, worked
with Dr. Rogers on the development of the HIIYH materials, helped choose
measures and develop the paper introduction, provided input throughout the
paper. MT: delivered training to the comparison group, trained assessors and
supervised in-home assessments and naïve coders, and contributed to data
analysis, interpretation, and writing of this manuscript. GY: planned, super-
vised, or conducted all analyses and contributed to “Methods and “Results
sections of the manuscript. EF: contributed to the data analysis and write-up
of the results. MP, AB, & EG: contributed community perspectives that guided
the design and execution of the study. All authors read and approved the final
manuscript.
Funding
This research project was funded by a grant from the Institute for Education
Science (R324A150211 PI: Rogers) which covered all costs associated with the
design and execution of this study. Dr. Fuller’s time was supported by NIMH
grant T32 MH07312. The project also received support from the MIND Institute
IDDRC, funded by the National Institute of Child Health and Human Develop-
ment (P50 HD103526 PI: Abbeduto).
Availability of data and materials
The datasets and unpublished materials used and/or analyzed in this study are
available from the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
This study was approved by University of California Davis Institutional Review
Board Investigator: Rogers, Sally, PhD IRB ID: 780328-19. All providers and fam-
ily members gave consent to participate and to be video recorded.
Consent for publication
Not applicable
Competing interests
SJR receives royalties from Guilford Publishing Company for project manuals
used in this study. AS, MT, GY, EF, MP, AB,& EG have no competing interests.
Author details
1 Department of Psychiatry Behavioral Sciences, MIND Institute, University
California Davis, Davis, USA. 2 Perelman School of Medicine, Center for Mental
Health, University of Pennsylvania, Philadelphia, USA. 3 Department of Com-
municative Disorders, University of Alabama, Tuscaloosa, USA. 4 Department
of Developmental Pediatrics, University of Colorado, Anschutz Medical
Campus, Boulder, USA.
Received: 8 November 2020 Accepted: 6 December 2021
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... Research has, until recently, tended to study parent coaching with volunteers who were typically white, college-educated mothers, and not employed outside the home (Ellison et al., 2021;Ingersoll & Berger, 2015;Vismara et al., 2018). Less is known about how working parents, fathers, families with lower socioeconomic status or families from diverse cultural backgrounds experience these autism services (Mirenda et al., 2022;Rogers et al., 2022;Stahmer et al., 2019). This has meant that the majority of caregivers who could potentially benefit from PII services are not well represented in the literature (Ingersoll & Berger, 2015;Stahmer et al., 2019). ...
... This has meant that the majority of caregivers who could potentially benefit from PII services are not well represented in the literature (Ingersoll & Berger, 2015;Stahmer et al., 2019). Researchers have begun to look at how evidence-based practices, proven to work in clinical autism research settings, can be adapted to work in diverse community settings (Mirenda et al., 2022;Nahmias et al., 2019;Rogers et al., 2022;Stahmer et al., 2019). The Covid-19 home-confinement period in Geneva created a situation in which all families from community-based autism intervention programs received services via . ...
... The copyright holder for this preprint this version posted March 22, 2022. ;https://doi.org/10.1101/2022 doi: medRxiv preprint 7 3. ...
Preprint
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In response to a Covid-19 period of home-confinement, autism early intervention programs in Geneva, Switzerland, converted their in-person services to a telehealth format. Forty-five families received daily videoconferencing sessions of primarily parent-implemented intervention. Questionnaires were completed at three time points. Child progress was monitored using the Early Start Denver Model Curriculum Checklist. Parents maintained high levels of participation and satisfaction, regardless of socio-economic or cultural background, with the majority reporting an improvement in their use of intervention techniques. Child progress followed a pattern of continued significant improvement across most developmental domains. Findings suggest that a more frequent dosage of parent-implemented intervention than typically studied is not only feasible, but appreciated by caregivers, especially when delivered via the time-saving videoconferencing format.
... Initial results indicate that family-centered approaches had positive results for different parental and child outcomes such as child physical activity (Cleffi et al., 2022), child social communication (Sengupta et al., 2021), parental stress and empowerment (Sengupta et al., 2021;Wainer et al., 2021), and high acceptability of the interventions (White et al., 2021), even if concerns with technology, access, and ease of use were apparent. Importantly, the pandemic highlighted the need and opportunity to make virtual parent-mediated services accessible to people in low-resource settings (Rogers et al., 2022;Sengupta et al., 2021;Yllades et al., 2021). ...
... These findings are consistent with other studies that report the viability of virtual delivery of music interventions (Cole et al., 2021), acceptance of this modality (Cleffi et al., 2022;White et al., 2021), increased access in low-resource countries (Rogers et al., 2022;Sengupta et al., 2021;Yllades et al., 2021), and child growth (Sengupta et al., 2021), even when the intervention was mediated by a parent who was learning in a virtual setting. As a quasi-experimental study, it is not possible to affirm that child outcomes were solely due to the parent coaching. ...
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The coronavirus disease (COVID-19) pandemic disrupted education, peer interactions, and social access for a large percentage of learners and created increased stress and workloads for parents, particularly in families of autistic children, who lost access to specialized services. Providing parents with resources to support their children at home became a necessity. This exploratory study investigated the feasibility of a parent coaching model of music interventions through virtual sessions in a low-resource country. Eight families participated in six 1-hr weekly sessions where the music therapist shared music interventions for young autistic children through videoconferencing. Results show that parent coaching in a virtual setting is feasible, useful, and acceptable for parents. All parents improved in their ability to modify the environment to address child’s needs, adequately respond to their child’s communication attempts, and provide opportunities for engagement and natural reinforcement. Parents found the coaching important, useful, and supportive. Initial recommendations for practice include providing guidelines for safe sessions; adapting to family needs, strengths, and culture; relaying information quickly and concisely; and ensuring that parents can access local services to continue their parenting journey.
... These interventions require parents to change the ways in which they interact with their child (Rogers et al., 2020;Stahmer et al., 2017). Mediation studies of two intervention trials indicated that the change in parental behaviour was the key driver of improvement in child outcomes (Gulsrud et al., 2016;Pickles et al., 2015;Shih et al., 2021). ...
Article
Lay abstract: Many early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy-Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy-Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child's behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions.
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Lay abstract: Early Intervention systems provide therapeutic services to families of young children birth to 3 years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery.
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Background For families with autistic children living in rural areas, limited access to services partly results from a shortage of providers and extensive travel time. Telehealth brings the possibility of implementing alternative delivery modalities of Parent Mediated Interventions (PMIs) with the potential to decrease barriers to accessing services. This study aimed to evaluate the feasibility and acceptability of implementing the World Health Organization-Caregivers Skills Training program (WHO-CST) via an online, synchronous group format in rural Missouri. Methods We used a mixed methods design to collect qualitative and quantitative data from caregivers and program facilitators at baseline and the end of the program, following the last home visit. Caregivers of 14 autistic children (3–7 years), residents of rural Missouri, completed nine virtual sessions and four virtual home visits. Results Four main themes emerged from the focus groups: changes resulting from the WHO-CST, beneficial aspects of the program, advantages and disadvantages of the online format, and challenges to implementing the WHO-CST via telehealth. The most liked activity was the demonstration (36%), and the least liked was the practice with other caregivers. From baseline to week 12, communication skills improved in both frequency ( p < 0.05) and impact ( p < 0.01), while atypical behaviors decreased ( p < 0.01). For caregivers' outcomes, only confidence in skills ( p < 0.05) and parental sense of competence ( p < 0.05) showed a positive change. Conclusion Our results support the feasibility of implementing the WHO-CST program via telehealth in a US rural setting. Caregivers found strategies easy to follow, incorporated the program into their family routines, and valued the group meetings that allowed them to connect with other families. A PMI such as the WHO-CST, with cultural and linguistic adaptations and greater accessibility via telehealth-plays an essential role in closing the treatment gap and empowering caregivers of autistic children.
Article
Full-text available
Objectives Early intervention can improve the outcomes of young autistic children, and parents may be well placed to deliver these interventions. The Early Start Denver Model (ESDM) is a naturalistic developmental behavioral intervention that can be implemented by parents with their own children (P-ESDM). This study evaluated a two-tiered P-ESDM intervention that used a group parent coaching program, and a 1:1 parent coaching program. We evaluated changes in parent use of the ESDM and parent stress, as well as child engagement, communication, and imitation. Methods Seven autistic or probably autistic children (< 60 months old) and their parents participated. A multiple-baseline design was used to compare individual changes between Baseline 1, Group Coaching (Tier 1), Baseline 2, and 1:1 Coaching (Tier 2). Parent and child behaviors were analyzed from weekly videos and graphed. Parenting stress was measured. Results All parents improved in their use of ESDM strategies after the Tier 1 intervention. Changes in parent fidelity during Tier 2 were mixed, but all parents maintained higher than baseline levels of fidelity. Six parents demonstrated above 75% ESDM fidelity in at least one session. There were positive changes in parent stress levels pre- post-intervention. Positive results were found for most children’s levels of engagement, imitation, and communication. There were significant positive relationships between parent fidelity and both child engagement and child functional utterances. Conclusions Group P-ESDM is a promising approach for improving parent fidelity and some child outcomes. Future randomized and controlled studies of group P-ESDM, using standardized outcome measures, are warranted.
Article
Background Parent coaching interventions for young children suspected of having autism spectrum disorder (ASD) have shown promise. The objectives were to measure the costs of parent coaching and the pre-diagnosis utilization of services and treatments related to autism and to compare costs between families who received parent coaching (PC) and those who received enhanced community treatment (ECT). Methods This analysis was conducted prospectively alongside a randomized comparative effectiveness trial of a PC intervention in British Columbia, Canada. Twenty-four participants were randomly assigned to the PC group and received 24 weeks of coaching support and 25 participants were assigned to the ECT group. Families in both groups also received health, education and community services. Parent-reported service utilization was collected for the 6 months prior to initiation of parent coaching and for the period coinciding with receipt of one of the two interventions. Services were costed from the public payer (i.e., provincial government) and societal perspectives; the latter included out-of-pocket family costs, parental time losses due to caregiving, and public payer costs. Results Families in the PC group used fewer services than did those in the ECT group. The estimated incremental mean cost per family over two time periods for PC compared to ECT was $2515 CAD (95% CI: − 1302, 5071) from the public payer perspective and $6994 CAD (95% CI: − 4395, 19,299) from the societal perspective. Conclusions The findings can be used to inform funding and policy decision-making to enhance the treatment options available for young children awaiting an ASD diagnosis.
Article
Full-text available
A randomized feasibility trial of a parent coaching (PC) intervention was conducted across 16 community agencies in a Canadian province. Parents of toddlers with suspected autism were assigned to either a PC group (n = 24) or an enhanced community treatment (ECT) group (n = 25). PC participants received 24 weeks of coaching support from community service providers trained in the project. Children in both groups also received available community services and supplementary materials. PC children made significantly greater gains in word understanding and PC parents had significantly higher quality of life, satisfaction, and self-efficacy scores. Results are discussed in terms of the challenges of conducting feasibility studies in community settings and the lessons learned in the project.
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Lay abstract: Naturalistic developmental behavioral interventions for young children with autism spectrum disorder share key elements. However, the extent of similarity between programs within this class of evidence-based interventions is unknown. There is also currently no tool that can be used to measure the implementation of their common elements. This article presents a multi-stage process which began with defining all intervention elements of naturalistic developmental behavioral interventions. Next, intervention experts identified the common elements of naturalistic developmental behavioral interventions using a survey. An observational rating scheme of those common elements, the eight-item NDBI-Fi, was developed. We evaluated the quality of the NDBI-Fi using videos from completed trials of caregiver-implemented naturalistic developmental behavioral interventions. Results showed that the NDBI-Fi measure has promise; it was sensitive to change, related to other similar measures, and demonstrated adequate agreement between raters. This unique measure has the potential to advance intervention science in autism spectrum disorder by providing a tool to measure the implementation of common elements across naturalistic developmental behavioral intervention models. Given that naturalistic developmental behavioral interventions have numerous shared strategies, this may ease clinicians' uncertainty about choosing the "right" intervention package. It also suggests that there may not be a need for extensive training in more than one naturalistic developmental behavioral intervention. Future research should determine whether these common elements are part of other treatment approaches to better understand the quality of services children and families receive as part of usual care.
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Children living in geographically rural areas may have limited access to early, intensive evidence-based interventions suggesting children residing in these areas are less likely to experience positive outcomes than their urban-dwelling peers. Telehealth offers an option to rural families seeking early intervention by using communication technologies where providers are able to consult and deliver services in real-time over geographical distances. To our knowledge, no other study has examined the implementation of P-ESDM in rural natural environments within the framework of the state’s early intervention program. Using a multiple baseline design across participants, the current study investigated the effects of the parent-Early Start Denver Model implemented within a rural northeastern state’s existing IDEA Part C early intervention program. Parents demonstrated increased fidelity to intervention strategies and reported satisfaction with the program’s ease of implementation and observed child gains. Statistically significant pre-to post- change in children’s ASD symptomatology were reported for the domains of communication, social reciprocity and repetitive and restricted behaviors. Support for parent-mediated interventions, the importance of fidelity of implementation for sustainability of intervention strategies, and the need to explore telehealth as a viable service delivery option to improve developmental trajectories for toddlers with autism are discussed.
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This meta-analysis examined the effects of the Early Start Denver Model (ESDM) for young children with autism on developmental outcome measures. The 12 included studies reported results from 640 children with autism across 44 unique effect sizes. The aggregated effect size, calculated using a robust variance estimation meta-analysis, was 0.357 (p = 0.024), which is a moderate effect size with a statistically significant overall weighted averaged that favored participants who received the ESDM compared to children in control groups, with moderate heterogeneity across studies. This result was largely driven by improvements in cognition (g = 0.412) and language (g = 0.408). There were no significant effects observed for measures of autism symptomology, adaptive behavior, social communication, or restrictive and repetitive behaviors.
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Technology-enabled interventions have the potential to break through barriers related to travel time and access in rural and remote communities. Practitioner training to provide high-quality behavioral interventions for children with autism spectrum disorder (ASD) is typically resource intensive including multiday trainings and ongoing live coaching. Although technology-enabled training including video conference and video review may be more accessible, technology may also introduce unique challenges by increasing the coach’s reliance on verbal feedback and reducing their ability to use common strategies such as modeling and environmental arrangement. Therefore, it is not clear whether technology-enabled training will result in similar outcomes for interventionists or the children they serve. Secondary analyses of data from a randomized controlled intervention trial compared new interventionists receiving 3 months of face-to-face training (n = 16) to interventionists receiving remote training (n = 11) to deliver a social communication intervention with fifty children age 3–9 with ASD. No significant differences were found in fidelity after 3 months between interventionists receiving face-to-face versus those receiving remote training. Overall, interventionists made significant gains in fidelity and children made significant gains in initiations of joint attention, requests, and play diversity. This study provides preliminary support for the use of a technology-enabled interventionist training protocol.
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In this comprehensive systematic review and meta-analysis of group design studies of nonpharmacological early interventions designed for young children with autism spectrum disorder (ASD), we report summary effects across 7 early intervention types (behavioral, developmental, naturalistic developmental behavioral intervention [NDBI], TEACCH, sensory-based, animal-assisted, and technology-based), and 15 outcome categories indexing core and related ASD symptoms. A total of 1,615 effect sizes were gathered from 130 independent participant samples. A total of 6,240 participants, who ranged in age from 0-8 years, are represented across the studies. We synthesized effects within intervention and outcome type using a robust variance estimation approach to account for the nesting of effect sizes within studies. We also tracked study quality indicators, and report an additional set of summary effect sizes that restrict included studies to those meeting prespecified quality indicators. Finally, we conducted moderator analyses to evaluate whether summary effects across intervention types were larger for proximal as compared with distal effects, and for context-bound as compared to generalized effects. We found that when study quality indicators were not taken into account, significant positive effects were found for behavioral, developmental, and NDBI intervention types. When effect size estimation was limited to studies with randomized controlled trial (RCT) designs, evidence of positive summary effects existed only for developmental and NDBI intervention types. This was also the case when outcomes measured by parent report were excluded. Finally, when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
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Background: Social communication interventions benefit children with ASD in early childhood. However, the mechanisms behind such interventions have not been rigorously explored. This study examines the mechanism underlying a naturalistic developmental behavioral intervention, JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation), delivered by educators in the community. Specifically, the analyses focus on the mediating effect of joint engagement on children's initiations of joint attention (IJA) skills and whether IJA postintervention are associated with later gains in children's receptive and expressive language. Methods: One hundred seventy-nine children, age 2-5 years, were randomized to immediate JASPER treatment or waitlist (treatment as usual) control. Independent assessors blinded to time and treatment coded children's time jointly engaged and IJA during a 10-min teacher-child interaction at baseline, exit, and follow-up. Age-equivalent receptive and expressive language scores from the Mullen Scales of Early Learning were collected at baseline and follow-up. Mediation analyses with linear mixed models were used to explore the potential mediating effect of joint engagement on IJA. Results: Joint engagement significantly mediated 69% of the intervention effect on young children's IJA and IJA predicted improvements in standardized language scores. Conclusions: Small but sustained changes in child-initiated joint engagement improved IJA, a core challenge in children with ASD, which in turn led to improvements in language.
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Lay abstract: Later born siblings of children with autism spectrum disorders (ASD) are at elevated risk for language delay or ASD. One way to manage this risk may be for parents to use techniques taught in Improving Parents as Communication Teachers (ImPACT) with the younger siblings during the period in which language delay and ASD may be too subtle to be diagnosed. ImPACT targets children's play, imitation, and communication skills. Improvement in these skills may reduce the severity of language delays and social communication deficits associated with ASD. In this study, 97 younger siblings of children with ASD and their primary parents were randomly assigned to ImPACT or a control group. We measured whether parents used ImPACT teaching strategies and whether children used the skills that ImPACT targets. We also measured children's later language ability and social communication skills. The results confirmed our predictions that parents' use of ImPACT strategies improves language ability by improving children's motor imitation and communication skills. Use of ImPACT also had a positive effect on children's language delay and ASD symptoms, supporting the clinical value of the findings. The study's methodological strengths make this one of the most rigorous tests of ImPACT and supports one way to manage the risk of language delay and ASD in younger siblings of children with ASD.
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Context: Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services. Objective: We reviewed evidence related to disparities in service use, intervention effectiveness, and quality of care provided to children with autism by race, ethnicity, and/or socioeconomic status. Data sources: Medline, PsychInfo, Educational Resources Informational Clearinghouse, and the Cumulative Index to Nursing and Allied Health Literature were searched by using a combination of Medical Subject Headings terms and keywords related to autism, disparities, treatment, and services. Study selection: Included studies addressed at least one key question and met eligibility criteria. Data extraction: Two authors reviewed the titles and abstracts of articles and reviewed the full text of potentially relevant articles. Authors extracted information from articles that were deemed appropriate. Results: Treatment disparities exist for access to care, referral frequency, number of service hours, and proportion of unmet service needs. Evidence revealed that racial and ethnic minority groups and children from low-income families have less access to acute care, specialized services, educational services, and community services compared with higher-income and white families. We found no studies in which differences in intervention effectiveness were examined. Several studies revealed disparities such that African American and Hispanic families and those from low-income households reported lower quality of care. Limitations: The body of literature on this topic is small; hence it served as a limitation to this review. Conclusions: The documented disparities in access and quality of care may further identify groups in need of outreach, care coordination, and/or other interventions.
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This study reports child and family outcomes from a community-based, quasi-experimental pilot trial of Project ImPACT for Toddlers that is a parent-mediated, naturalistic, developmental behavioral intervention for children with or at-risk for autism spectrum disorder developed through a research–community partnership. Community early interventionists delivered either Project ImPACT for Toddlers ( n = 10) or Usual Care ( n = 9) to families based on Part C assigned provider. Twenty-five families participated, with children averaging 22.76 months old ( SD = 5.06). Family and child measures were collected at intake, after 3 months of service, and after a 3-month follow-up. Results indicate significantly greater improvements in positive parent–child interactions for Project ImPACT for Toddlers than usual care families, as well as large, but non-significant, effect sizes for Project ImPACT for Toddlers families in children’s social and communication skills.