Parent Perceptions About

Communicating With Providers

Regarding Early Autism Concerns
Jill Locke, PhD,a,* Lisa V. Ibanez, PhD,b,* Elyanah Posner, BA,b Lindsay Frederick, BS,a Pascale Carpentier, BA,b
Wendy L. Stone, PhDb

abstract BACKGROUND: Long delays between parents’ initial concerns about their children’s development
and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although
discussions between parents and providers about early ASD concerns can be difficult, they are
critical for initiating early, specialized services. The principles of shared decision-making can
facilitate these discussions. This qualitative study was designed to gain insights from parents
of young children with ASD about their experiences communicating with primary care
providers with the goal of identifying strategies for improving conversations and decision-
making regarding the early detection of ASD.
Three 2-hour focus groups were conducted with 23 parents of children with ASD
METHODS:
,8 years old. Qualitative analysis employed an iterative and systematic approach to identify
key themes related to parents’ experiences.
RESULTS: Eight themes related to communication about early ASD concerns emerged:
characteristics of the child that caused parental concerns, the response of others when the
parent brought up concerns, how concerns were brought up to the parent by others, parental
responses when others mentioned concerns, information seeking, barriers to and facilitators
of acting on concerns, and recommendations to providers. Parent responses suggest the need
for increased use of shared decision-making strategies and areas for process improvements.
Primary care providers can play a key role in helping parents with ASD concerns
CONCLUSIONS:
make decisions about how to move forward and pursue appropriate referrals. Strategies
include responding promptly to parental concerns, helping them weigh options, and
monitoring the family’s progress as they navigate the service delivery system.

WHAT’S KNOWN ON THIS SUBJECT: Challenges in parent-provider

communication about early autism spectrum disorder (ASD)
concerns can prevent young children from accessing
appropriately specialized treatment at the age when it may be
most effective. The process of shared decision-making can lead to
more productive discussions and consensus building.
WHAT THIS STUDY ADDS: This qualitative study provides insights
from parents of young children regarding barriers to and
facilitators of acting on their early concerns about ASD. Specific
recommendations for shared decision-making strategies that
may increase early access to ASD-specialized services are
provided.
To cite: Locke J, Ibanez LV, Posner E, et al. Parent Perceptions
About Communicating With Providers Regarding Early Autism
Concerns. Pediatrics. 2020;145(s1):e20191895J
Departments of aSpeech and Hearing Sciences and bPsychology, University of Washington, Seattle, Washington
*Contributed equally as co-first authors.
Dr Locke designed the focus group protocol, coconducted focus groups, coordinated and
supervised data collection and analysis, and drafted the initial manuscript; Dr Ibanez
conceptualized and designed the study, conducted focus groups, and participated in writing and
editing the manuscript; Dr Stone conceptualized and designed the study and participated in the
writing, editing, and final review of the manuscript; Ms Posner and Ms Frederick coded the data,
conducted initial data analysis, and participated in drafting the manuscript; Ms Carpentier
recruited the sample, collected data, and reviewed the manuscript; and all authors contributed to
the writing of the manuscript, approved the final manuscript as submitted, and agree to be
accountable for all aspects of the work.
DOI: https://doi.org/10.1542/peds.2019-1895J

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SUPPLEMENT ARTICLE PEDIATRICS Volume 145, number s1, April 2020:e20191895J
Although parents report becoming
concerned about their children’s
development at an average age of 17 to
19 months,1,2 the median age of an
autism spectrum disorder (ASD)
diagnosis in the United States is
52 months (or 74 months for Hispanic
children).3,4 Parental concerns about
their children’s development have
been found to be valid5 as well as
predictive of a later ASD diagnosis; 6,7
however, discussions about early
ASD concerns between parents and
primary care providers (PCPs) can be
difficult for both parties. Parents may
not raise concerns because they lack
knowledge about early signs,8 are not
sure how to articulate them, or fear
that judgment will be passed on them
or their children.9 In turn, PCPs may be
reluctant to broach this topic because
of limited familiarity with early signs of
ASD, lack of comfort discussing it with
families, and/or uncertainty about how
to convey the information.10–12
A family-centered care framework may
facilitate more productive provider-
parent discussions about early signs of
ASD. This framework promotes
a respectful family-professional
partnership and a shared decision-
making process that capitalizes on the
unique expertise and cultural values
that PCPs and parents have to
offer.13,14 Shared decision-making,
through its key components, offers
a systematic and inclusive way for
PCPs to navigate complex discussions
via the following: (1) supporting
parent participation using active
listening; (2) helping parents explore
options and available, evidence-based
treatments; (3) assessing parents’
values and preferences; (4) reaching
a decision with the parents; and
(5) evaluating and/or monitoring the
decisions made.15–19 Unfortunately,
parents of children with ASD report
less involvement in shared decision-
making than the parents of children
with other developmental disorders.20
As such, it seems critical to set the
course for ongoing shared decision-
making by starting with the earliest
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PEDIATRICS Volume 145, number s1, April 2020
discussions about ASD concerns. The
purpose of this qualitative study was
to characterize parents’ experiences in
recognizing and communicating about
early ASD concerns and identify the
barriers to and facilitators of acting on
concerns with the broader goal of
facilitating more open and transparent
communication between PCPs and
families to improve early detection.
METHODS
Setting and Participants
The University of Washington
Institutional Review Board approved
this study, and all participating
parents provided informed consent.
Eligibility criteria were having a child
with ASD ,8 years old and fluency in
English or Spanish. Families were
recruited through study flyers
distributed via e-mail blasts to ASD
diagnostic and treatment centers,
early intervention (EI) programs, and
parent support groups. Twenty-three
parents described their experiences
with 29 children (79% boys; mean
current age 5.3 years; age range 2–8
years). See Table 1 for parental
demographic information.
Procedures
Three separate 2-hour focus groups
were held to learn about parental
views and experiences regarding
decision-making processes at
different stages of service delivery.
Two groups were conducted in
English, and 1 was conducted in
Spanish. The size of 2 groups
(7–12 parents) was consistent with
recommended procedures for
thematic saturation21; however, 1
group (Spanish speaking) had only 4
participants because of last-minute
scheduling conflicts. Sessions were
audio recorded and anonymized
during an automated, software-based
transcription process. The focus
group moderators used a systematic
and comprehensive protocol that
comprised (1) instructions for
introducing the purpose, norms, and
expectations to parents (eg,
confidentiality) and (2) open-ended
questions and follow-up probes for
facilitating the discussion. Focus
groups were designed to allow for
synergistic discussion among parents.
Parents received $100 for their time.
Measures
A brief questionnaire was used to
collect demographic information.
The interview guide probed for
information about the emergence of
early concerns about children’s
development, the experience of
hearing that the children might have
ASD, communication with PCPs and EI
providers about ASD concerns, the
type of materials (content and format)
that might facilitate communication
and decision-making, and decisions
about follow-up on recommendations
or referrals (Table 2).
Data Analysis
Focus group discussions were
transcribed and uploaded to NVivo 12
(QSR International) for data
management. The coding scheme was
developed by using a rigorous,
systematic, transparent, and iterative
approach that employed several
steps. First, the research team
independently reviewed 1 initial
transcript to identify recurring
themes. Second, the researchers met
as a group to develop a preliminary
codebook that integrated the original
themes conceptualized during the
focus group protocol development (ie,
deductive approach) as well as newer
themes that emerged from initial
review of the transcript (ie, inductive
approach).22,23 Next, the research
team collectively determined which
themes to incorporate into the final
codebook. Operational definitions and
examples of each theme were
documented, as were rules about
when to use or not use each code. The
coding scheme was applied to all of the
data from the 3 focus groups to
produce a descriptive analysis of each
theme and was refined throughout the
data analytic process.22 Thematic
73
saturation was reached at the point at
which no new insights were obtained,
and no new codes were identified
when the codebook was applied across
all transcripts. Two coders coded all
data, and interrater reliability was
calculated for 67% of the transcripts.
The coders met together on a weekly
basis to discuss, clarify, verify, and
compare themes; disagreements were
discussed with the research team to
attain consensus. Percentage of
agreement was calculated on the basis
of the number of words agreed on by
the 2 coders within a given theme;
average agreement was 94.5% across
all the themes.
RESULTS
Eight themes emerged from the data
and are summarized below. See
Table 3 for themes and sample quotes.
Characteristics of the Children That
Caused Parental Concerns
Parents were typically the first to
become concerned about their
children’s development, with
concerns emerging at an average age
of 17.1 months. Although the
behaviors prompting early concerns
often represented core ASD deficits
(eg, impaired social engagement
and limited eye contact), multiple
presentations were described,
including delays in language or
motor development, sensory-seeking
behaviors (eg, spinning toys), and
challenging behaviors (eg, severe
tantrums with difficulty calming).
One parent remarked, “…her speech
is not progressing, like, there’s a lot of
things that aren’t right; she was
spinning a lot.” Some first-time
parents described limited knowledge
of developmental milestones, which
prevented them from recognizing
early signs.
Response of Others When the Parent
Brought up Concerns
Many parents who mentioned their
concerns to their children’s PCPs felt
that they were dismissed or not taken
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74
seriously because their PCPs
recommended that they “wait and
see” or suggested that they were
“overly worried.” However, a few
parents felt supported in their
concerns in that they received prompt
referrals and information about ASD
from their PCPs. Parents who
discussed concerns with other service
providers, friends, or family members
received similarly dismissive
responses. One parent noted that
“when I went back to our
pediatrician, he [was], like, ‘Well, I
didn’t think anything was wrong with
her.’ I think at that point…he kind of
wrote off me and my husband as
being overanxious parents.” Some
parents were told that the children
did not have “classic tells,” were “too
social for autism,” or were simply
“shy” or “introverted,” whereas others
ascribed the children’s behaviors to
medical (eg, prematurity) or
situational causes (eg, changing
preschools).
How Concerns Were Brought up to
the Parent by Others
Although parents were often the first
to experience concerns, some parents
were not concerned about ASD until
others raised this possibility.
Concerns were raised by PCPs, EI
providers, family members, day care
TABLE 1 Demographic Characteristics of Parents
Characteristic
Age, mean (SD)
Sex, n (%)
Male
Female
Race, n (%)
Asian
Black and/or African American
White
.1 race
Other
Ethnicity, n (%)
Hispanic
Non-Hispanic
Parental education, n (%)
High school and/or vocational degree
Associate’s degree and/or college coursework
Bachelor’s degree
Advanced and/or graduate degree
Information is missing for 1 parent.
or preschool staff, or mothers of
children attending the same
preschool and were conveyed via
e-mail, via phone, or in person. Some
parents received informal notes that
their children’s behaviors were not
developmentally appropriate,
whereas others received specific
referrals for diagnostic evaluations or
packets of resources. One parent
mentioned, “[My son] went to day
care, and the counselor at day care
sent me an e-mail [that said], ‘Hey,
let’s talk about…’ in a soft tone. And I
found that really irritating, and I was
defensive and [said], ‘Let’s not. Let’s
let him develop at his own pace.’”
Most parents reported that the
message was delivered in a kind and
gentle manner, whereas others noted
that the delivery was poor and/or
unwelcome (eg, mentioning concerns
over e-mail or referring to an autism
center without explaining autism).
Parental Responses When Others
Mentioned Concerns
Parents experienced a range of
emotions when ASD concerns were
mentioned. Some were completely
surprised because they had not
noticed any issues and their children
had met developmental milestones.
One parent reported, “We just
thought he was unique.” Some
Result
37.5 (4.8)
1 (4.5)
21 (95.5)
1 (4.5)
1 (4.5)
13 (59.1)
3 (13.6)
4 (18.2)
6 (27.2)
16 (72.7)
4 (18.2)
2 (9.1)
12 (54.5)
4 (18.2)
LOCKE et al
parents were skeptical and resistant movie Rain Man), whereas others had parents ascribed delays in moving
to the suggestion that their children exposure to ASD from family forward to their PCPs’ or EI
had ASD. The label of autism members or children of coworkers. providers’ dismissiveness and lack
generated fear and anxiety for some Most parents gathered information of support, failure to use ASD-specific
parents, with one reporting, “We were using Google searches, visiting screening tools, or lack of familiarity
totally freaking out,” but others found specific Web sites (eg, that of Autism with the presentation of ASD in
calm or comfort in the idea that Speaks), or checking out library girls and underrepresented
they may finally have a concrete books. One parent reported, “I went populations. One parent noted,
explanation for their children’s to the library and took out a gazillion “Why didn’t [my pediatrician] refer
difficulties. Despite initial hesitancy books and just read and read. Then, us or say something? We had to
or negative emotions, most parents the message I took from that was, ‘Act wait until the school district actually
sought more information from their now and as much as possible.’” said something.” In addition, some
PCPs and EI providers or took action Overall, parents reported feeling parents reported that after their
when they were given specific overwhelmed by the amount of children were diagnosed with ASD,
recommendations and/or referrals information to sort through, and their EI providers disclosed that
(eg, who to contact for diagnosis or some felt that the information painted they were not allowed to mention
treatment). a bleak picture of their children’s ASD to parents, thus resulting in
futures. lost time. Unsupportive family
Information Seeking members and parents’ own hesitancy
Some parents had limited knowledge Barriers to Acting on Concerns about having their children being
about ASD other than its Parents cited numerous barriers to labeled and stigmatized (referred
representation in the media (eg, the acting on their ASD concerns. Some to by one parent as an “internal
battle”) also were cited as barriers.
TABLE 2 Interview Questions and Probes Hispanic families reported that
language barriers impeded
If you were the first person to have concerns about your child’s behaviors or development:
What types of behaviors were you concerned about?
communication with PCPs and EI
Who, if anyone, did you talk to about your concerns? Family? Friends? Your doctor? providers as well as access to ASD-
How did they respond? specific materials and services. In
If someone else was the first to have concerns: addition, a lack of familiarity with
Who first mentioned these concerns to you? patients’ racial and/or ethnic
How old was your child at the time?
What types of behaviors were the source of concern?
backgrounds and cultural beliefs
What was your reaction when you were told? (eg, expectations regarding pointing)
How did you find out that these behaviors might be due to autism? represented another barrier.
Who was the first person to mention autism to you? Parents uniformly described the
How did they tell you about autism? How was it described to you? logistic constraints associated with
How did you feel when you heard that? How did you react?
Who, if anyone, did you talk to about this?
the service delivery system as
How much did you know about autism at that time? barriers, including long waitlists,
What did they tell you to do next? high costs, and the need to travel
Knowing what you know now about autism, what do you wish you had known at that time? long distances for diagnostic and
What was the role of your provider (eg, doctor or EI provider) in identifying your child’s autism? other ASD-specialized services.
What types of recommendation(s) did she or he provide?
How did she or he explain the process or next steps? Facilitators to Acting on Concerns
How did she or he help you decide among different possible courses of action?
What do you think would have been a better way for your provider to have presented these Parents were more likely to act on
recommendations (or to improve the conversation)? early concerns when they were
What types of materials did your provider give you? aware of the red flags for ASD and
What specific information would have been helpful?
What type of format (eg, pamphlet) would have been helpful?
when they received appropriate
How long did it take you to follow through on your provider’s recommendation for an autism diagnosis referrals, resources, and support
or services? from their PCPs and EI providers.
What factors did you consider in deciding whether to move forward? In an effort to obtain needed
How did you make the final decision to move forward? referrals, some parents went to
What types of information and/or support would have made it easier for you to move forward
quicker?
PCPs with “evidence” (eg, notes
What additional questions do your wish you had asked your provider when discussing concerns or about child behavior) and resolved
next steps? to be assertive (eg, “put my foot
What aspects of your life do you wish your provider understood better during this process? down”). Not surprisingly, living in
In what ways did your cultural background or ethnicity impact your experience with this process? communities with a greater

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PEDIATRICS Volume 145, number s1, April 2020 75
TABLE 3 Definitions of Themes and Sample Quotes
Themes
Characteristics of the child that caused
parental concern
Response of others when the parent brought
up concerns
How concerns were brought up to the parent
by others
Parental responses when others mentioned
concerns
Information seeking
Barriers to acting on concerns
Facilitators to acting on concerns
Recommendations to PCPs and EI providers
Quotes
“My son spent his time looking up at the ceiling, and he did not walk, play, or move. Nothing. Nothing. He didn’t
cry, he did not give me any expression of happiness or uncomfortableness. Nothing. He didn’t do anything.”
“And so finally, I was, like, her speech is not progressing, like, there’s a lot of things that aren’t right; she was
spinning a lot.”
“I think it was at his 18 mo; he had trouble feeding, like, he was a picky eater, and he wouldn’t, like, touch
anything.”
“He was approaching his second birthday; his behaviors started getting worse, the tantrums. It was just like
a ticking bomb. I remember we were all tiptoeing around him not to set him off.”
“Then, when I went back to our pediatrician, he is, like, ‘Well, I didn’t think anything was wrong with her.’ He was
just…I think at that point, I didn’t realize it, but I think at that point, he kind of wrote off me and my husband
as being overanxious parents.”
“I felt alone in the sense that I didn’t have any support from my husband. He would say that I was crazy, and my
mother-in-law was living with me, so they would say, her first reaction was, ‘In [country], they’ve never heard
of it. Don’t listen to the doctor; the doctors are crazy, and you are, too, because you listen to them.’”
“My pediatrician was really receptive.”
“Yes, a friend who has a 6-y-old son with autism. My son was about one-year-old, and she told me, ‘Your son has
autism.’ She said, ‘I feel like you should take him to be evaluated.’”
“The women from the development center were very gentle with me when they brought it up, ‘Well, maybe,
possibly some of the signs…’”
“Then, he went to day care, and the counselor at day care sent me an e-mail, ‘Hey, let’s talk about…’ in a soft
tone. And I found that really irritating, and I was defensive and [said], ‘Let’s not. Let’s let him develop at his own
pace.’”
“I am a single parent, which not only am I having my first child and learning all about her, but now she has her
own special roadmap that isn’t published.”
“We have no idea; we were totally freaking out. But we had no idea.”
“My husband and I just looked at each other and were, like, ‘Welp, we are going to get her evaluated. This
afternoon, we will be on the phone to find someone.’”
“For me, I went to the library and took out a gazillion books and just read and read. Then, the message I took
from that was, ‘Act now and as much as possible.’”
“But the memories I had about autism…if somebody asked me what it was, it was the Dustin Hoffman character
in Rain Man.”
“It was when I was looking at the developmental models and chart, and I realized the significance of pointing and
waving and other things that he wasn’t doing. That is when I got concerned.”
“I started being on the waitlist, and I’m, like, ‘What am I doing in like the next year?’ because the waitlist is, like,
a year.”
“I also agree that my pediatrician, why didn’t she refer us or say something? We had to wait until the [city] school
district actually said something. To me, there is no harm in sending that referral when a parent is saying, ‘I am
having developmental concerns about my child.’ Then, that way, it gets out, and then the parent can do
something about it.”
“No, I begged the doctor; I talked to her and told her to get me an appointment. So she told me, ‘No, you have to
find references and etc.’ I told her, ‘Well I am concerned’; the doctor told me I was exaggerating.”
“Like, if you have the money, you can kind of skip ahead of the lines.”
“I found really making that extra effort to network helped get the resources because everybody seems to be
booked.”
“My pediatrician was very supportive, and we got him to [the center] right away, and we were so lucky.”
“And that pediatrician did send me all of the surveys concerning 18-mo behavior. And I obviously, when I started
filling it out, I saw that there were a lot of other things. And then she referred me to an evaluation for hearing
and a general evaluation at [the agency].”
“My pediatrician asked me who I want to see. She didn’t have a list. She didn’t know who to recommend. I am,
like, ‘Really?’ It would be nice if they just had those resources handy that were local.”
“Once you get your diagnosis, it would’ve been nice to have someone actually talk to you who could explain it.”
“Yes, I would say for providers, almost make it mandatory for them to collaborate with one another.”
“We’re just lost; so for me, what has been helpful is when I go to [the program], they put out all of their
documents and pamphlets on a table, they lay out all of the resources, and they tell you where they are and let
you take what’s going to help you.”

availability of services and resources
also acted as a facilitator. One parent
stated, “If you have the money, you
can kind of skip ahead of the lines,”
referring to the long waitlists. Some
parents noted that they were able to
bypass long waitlists for diagnosis by
participating in research projects
offering evaluations or through
personal connections or networking.
Recommendations to PCPs and EI
Providers
Parents expressed a desire that
providers receive more training on
the early signs of ASD, be more

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76 LOCKE et al
responsive to parental concerns, and
be more willing to make referrals.
They believed that PCPs should feel
comfortable acknowledging that they
are not ASD experts and referring
families to appropriate specialists
more readily. Improved care
coordination and communication
between PCPs and other providers,
the availability of case managers to
assist parents in identifying and
coordinating services, and ongoing
follow-up discussions also were
recommended to help parents feel
more supported and navigate the
service delivery system more
effectively. One parent commented,
“Once you get your diagnosis, it
would [have] been nice to have
someone actually talk to you who
could explain it.”
Several suggestions for information
and written materials to facilitate
communication and understanding
were offered: (1) provide a clear,
simple definition of ASD; (2) address
and/or dispel some of the negative
beliefs and stigma associated with
ASD and provide a hopeful message
about the long-term course; (3)
explain the diagnostic process;
and (4) provide descriptions of
potential interventions that may be
appropriate for the child. In addition
to offering this information as early
as possible, parents suggested that it
be presented within the context of an
in-person conversation that includes
other key family members instead of
relying exclusively on written
documents. Parents also suggested
that PCPs and EI providers use
a culturally sensitive lens and spend
time better understanding each
family’s viewpoints and existing
perceptions about ASD (eg, potential
cultural stigma).
DISCUSSION
To our knowledge, this is the first
qualitative study designed to learn
about parents’ experiences
communicating with providers about
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PEDIATRICS Volume 145, number s1, April 2020
ASD concerns with the goal of
identifying strategies for improving
conversations and decision-making to
improve early detection. Several
themes emerged from the qualitative
data: the characteristics of the child
that caused parental concerns, the
responses of others when the parent
brought up concerns, how ASD
concerns were brought up to the
parent and how they responded, how
parents sought information about
ASD, the barriers to and facilitators of
acting on their ASD concerns, and
recommendations to PCPs and EI
providers. Parents indicated several
ways in which communication about
concerns with PCPs was challenging
and offered suggestions for process
improvements that align with the
core principles of family-centered
care, particularly the shared decision-
making approach (ie, seeking parent
participation, exploring options for
next steps, assessing parents’ values
and preferences, and reaching,
evaluating, and monitoring
decisions).15,16,18 Given the time and
logistic constraints associated with
well-child visits, the shared decision-
making steps and/or strategies
described below may be implemented
flexibly by PCPs and include
scheduling a follow-up visit to allow
for ample time to navigate the
conversation.
Regardless of who first raises
concerns, PCPs are in a key position
to encourage, support, and maintain
parent participation during the
decision-making conversation. Active
listening strategies are helpful for
understanding a parent’s perspective
about his or her child’s development
with respect to the early signs
of ASD and developing a shared
understanding of what ASD
represents. Although parents may
have different levels of knowledge
about ASD when concerns arise,
many parents in this study identified
early behaviors that are consistent
with core ASD impairments (eg, poor
eye contact and difficulties with social
interactions). This finding suggests
that incorporating concrete examples
of early ASD signs into a simple
overview of the disorder may serve as
a springboard for “getting on the
same page” with parents regarding
their children’s development.
Highlighting the facts that ASD occurs
on a spectrum, wherein features can
vary greatly from child to child, and
that individuals with ASD have the
potential to become productive
members of society and live fulfilling
lives may dispel some of the
stereotypes commonly associated
with ASD that may contribute to
denial and hesitancy to act on
concerns and prevent parents from
becoming overwhelmed by the
misinformation available through
other sources (eg, Internet searches).
Some PCPs may seek additional
training and/or access resources
regarding the early presentation of
ASD given the rapid changes in this
area of knowledge.
In discussing potential next steps or
referrals, PCPs may help parents
explore the potential benefits, harms,
and challenges associated with
different options, such as referrals for
EI24 and diagnostic evaluations, per
the American Academy of Pediatrics
guidelines.25 Parents in this study, as
well as others,26 were clear about
wanting service referrals as early as
possible rather than a “wait-and-see”
approach. They also expressed
a desire for information about the
diagnostic process and potential
interventions that may be
appropriate for their children.
Although PCPs may face challenges
in keeping up with available
ASD-specific services in their
communities,12 periodic
engagement with key stakeholders
and/or organizations may provide the
needed information. In light of the
system-level barriers to services
described by parents in the current
study (eg, long waitlists for diagnostic
evaluations), as well as in other
studies,27,28 PCPs may want to
77
prepare parents for what might be
a long, obstacle-ridden road ahead.
Within the context of their
discussions, it is critical that PCPs
consider the parents’ values,
priorities, and preferences.
Parents indicated that provider
dismissiveness contributed to delays
in early detection and that they would
have preferred that PCPs actively
listen to and respect their viewpoints.
They also indicated a desire for
increased sensitivity to different
cultural beliefs and values, including
expectations and views regarding
developmental milestones (eg, use of
eye contact and acceptability of
pointing), perspectives on stigma, and
the importance of the extended
family. PCPs may find it useful to ask
open-ended questions about these
areas when parents appear reticent to
share their opinions.
Once potential next steps have been
reviewed, PCPs may help parents
reach a decision, set a goal, and then
monitor their progress. Some parents
may prefer that decision-making
occur in the form of a discussion,
whereas others may benefit from
written lists of the pros and cons of
different options. In the current study,
most parents indicated that they were
ready to make a decision and act
fairly quickly once providers were
responsive to their concerns.
However, some parents will need
more time. Offering follow-up
appointments has benefits for both
situations, whether it be to provide
additional information or resources,
engage other family members in the
discussion, clarify misinformation
obtained from the Internet, or
reevaluate decisions. Once a decision
is made, PCPs may wish to follow-up
with parents regarding their progress
toward implementing the decision
and assist with barriers if possible.
PCPs’ efforts to monitor progress may
provide parents with the support
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78
they need to navigate the health care
system and coordinate care for their
children more efficiently.
The medical complexity and
comorbidities associated with ASD
require a comprehensive,
coordinated, family-centered
approach that is consistent with the
medical home model. Shared
decision-making is one of the
foundational components of this
model and is considered to be critical
for meeting the specialty care needs
of these children.19,29,30 The use of
shared decision-making when
discussing early ASD concerns may
help establish the building blocks of
a trusting relationship that will be
essential for managing the long-term
care of a child’s ASD-specific
symptoms and other medical
comorbidities.31,32 When engaged in
shared decision-making with PCPs,
parents of children with ASD report
higher levels of satisfaction with the
overall quality of their children’s
health care as well as increased
guidance regarding treatment options
and controversial issues related to
ASD.33 Conversely, the failure to
employ shared decision-making
strategies may not only leave parents
feeling dissatisfied and unsupported
but also may prevent them from
seeking advice from their PCPs
regarding the efficacy or safety of
complementary and alternative
treatments they may be
considering.12
There are several limitations of this
study. First, the current sample was
homogeneous with respect to
socioeconomic factors because the
majority of the participants were
white, non-Hispanic mothers with
a college education. Second, the
majority of our sample consisted of
parents who were the first to raise
ASD concerns to their PCPs. As such,
additional factors may come into play
for parents who are less aware of ASD
and/or developmental issues and
parents from diverse,
underrepresented backgrounds.
Third, these results are unidirectional,
reflecting only the experiences and
perspectives of parents and not those
of health care providers who engage
with concerned parents. Future
studies should examine the
perspectives of other key
stakeholders involved in the
early detection of ASD.
CONCLUSIONS
The results of this study point to the
importance of employing shared
decision-making strategies within the
context of parent-provider
discussions about ASD concerns.
Given the complex, multifaceted
nature of this type of decision-making
and the logistic constraints that exist
for well-child visits, it is clear that the
development and use of ASD-specific
shared decision-making aids34,35 may
assist both PCPs and parents in
navigating the different aspects and
increase efficiency. Using a shared
decision-making approach and
accompanying aids also may be
helpful for EI providers given that
they also have indicated uncertainty
about how to communicate with
parents about ASD concerns.36,37 The
development of such aids is currently
underway and will include materials
that PCPs and EI providers can use
with parents to describe the early
features and heterogeneity of ASD
and to help them make decisions
about possible next steps with
consideration of each family’s
priorities, needs, and values.
ABBREVIATIONS
ASD: autism spectrum disorder
EI: early intervention
PCP: primary care provider
LOCKE et al
Accepted for publication Jan 27, 2020
Address correspondence to Jill Locke, PhD, University of Washington, Box 354875, 1417 NE 42nd St, Seattle, WA 98105. E-mail: jjlocke@uw.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2020 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Funded by the Health Resources Services Administration (R41MC31076 to Dr Stone) as well as the National Institute of Mental Health (K01MH100199 to Dr
Locke). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any
endorsements be inferred by, the Health Resources and Services Administration, Department of Health and Human Services, or US Government.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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LOCKE et al
 Parent Perceptions About Communicating With Providers Regarding Early
Autism Concerns
Jill Locke, Lisa V. Ibanez, Elyanah Posner, Lindsay Frederick, Pascale Carpentier and
Wendy L. Stone
Pediatrics 2020;145;S72
DOI: 10.1542/peds.2019-1895J

Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/145/Supplement_1/S72
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 Parent Perceptions About Communicating With Providers Regarding Early
Autism Concerns
Jill Locke, Lisa V. Ibanez, Elyanah Posner, Lindsay Frederick, Pascale Carpentier and
Wendy L. Stone
Pediatrics 2020;145;S72
DOI: 10.1542/peds.2019-1895J

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/145/Supplement_1/S72

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