Original Article

Elucidating the Perspectives of Autistic Youth About Their

Health Care Experiences: A Qualitative Study
Belinda O’Hagan, MA,* Sarah Foster, MA,* Amy Ursitti, BS,* Erika L. Crable, PhD, MPH,†
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX

Alexander J. Friedman, MPH,* Lauren Bartolotti, MA,* Shari Krauss, MA, MPH*
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024

ABSTRACT: Objectives: Autistic individuals have higher rates of co-occurring medical conditions and service
use. However, autistic individuals and their families also reported lower satisfaction with health care service
delivery. Previous studies described health care experiences of autistic adults, but less is known about those
of autistic adolescents and young adults. This study aimed to qualitatively describe the health care experi-
ences of autistic youth. Methods: Four longitudinal/serial focus groups were conducted with 8 autistic
adolescents and young adults. Participants were members of an autistic patient advisory board, which is part
of a broader initiative at a large, urban, safety-net hospital to improve the health care experiences of autistic
patients. Focus groups were conducted virtually and were audio-recorded. Audio recordings were transcribed
and verified for accuracy. Transcripts were consensus-coded with an inductive approach using tenets of
grounded theory. Results: Findings included 4 recurring themes: accessibility and accommodations, barriers
of health service use, patient involvement in health care decisions, and facilitators of patient-clinician re-
lationship. Participants noted that visit preparation, sensory items, and repeated positive interactions with
clinician were helpful to build a positive health care experience. Conclusion: Our findings support previous
research that suggest the need to individualize care, ensure availability of accommodations, apply flexibility
in practice whenever possible, and increase health care professional knowledge about this unique patient
population.
(J Dev Behav Pediatr 45:e39–e45, 2024) Index terms: autism spectrum disorder, youth, health care experiences, service use focus group, qualita-
tive.

H ealth care improvements for autistic individuals of

all ages are needed.1 Past studies found that autistic
patients and their families reported low care satisfac-
tion.2,3 One review found that autistic patients and their
families experienced barriers related to autism-related
characteristics (e.g., sensory sensitivities), clinician-level
barriers (e.g., insufficient knowledge), system-level bar-
riers (e.g., lack of guidelines), and patient-level factors
(e.g., patient/family dynamics).3 These health care bar-
riers potentially contribute to the disparities in care.
Autistic youth have complex medical needs and higher
care use compared with the general population.4 Co-
occurring medical conditions include anxiety, gastroin-
testinal problems, and obesity.5 Therefore, autistic youth
may have frequent health visits.4 However, the experi-
From the *Division of Developmental and Behavioral Pediatrics, Boston Medical
Center, Boston MA; and †San Diego Department of Psychiatry, University of
California, Child and Adolescent Research Center, La Jolla, CA.
Received November 2022; accepted August 2023.
Disclosure: The authors declare no conflict of interest.
Supplemental digital content is available for this article. Direct URL citations
appear in the printed text and are provided in the HTML and PDF versions of this
article on the journal’s Web site (www.jdbp.org).
Address for reprints: Belinda O’Hagan, MA, Division of Developmental and Be-
havioral Pediatrics, Department of Pediatrics, Boston Medical Center, 801 Albany
St., Floor 1E, Boston, MA 02119; e-mail: belinda.ohagan@bmc.org
Copyright Ó 2023 Wolters Kluwer Health, Inc. All rights reserved.
ence of accessing health services can be difficult for
autistic youth and their families.3
Previous studies describe the health care experiences
of autistic individuals from the perspectives of clinicians
and caregivers.6,7 Although first-person narratives of au-
tistic adult’s health care experiences exist, few studies
have gathered first-person narratives of the experiences
of autistic youth, suggesting that the health care expe-
riences of autistic youth are not well understood.8–11
Studies on health care narratives from adolescents and
young adults focused largely on the process of tran-
sitioning from pediatric to adult care service use,12–14
rather than autistic youth’s experience seeking and re-
ceiving any kind of health services.
This study aims to elucidate the overall health care
experiences of autistic adolescent and young adult
patients, from their own perspective. Findings from this
study could be useful to inform efforts to improve the
hospital experience of autistic youth and young adults.
METHODS
Design and Theoretical Framework
The study was approved by the Boston Medical Cen-
ter and Boston University Medical Campus Institutional
Review Board (H-40878). We used 4 serial focus groups
over 12 months with the same cohort of 8 participants to
obtain qualitative insight about the health care

Vol. 45, No. 1, January 2024 www.jdbp.org | e39

Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
 experiences of autistic youth.15 Serial focus groups were
identified as a preferable method because we wanted to
provide multiple opportunities for participants to be-
come comfortable with the focus group setting and to
share their experiences receiving care across a variety of
health settings.16
Procedures were reported using the Standards for
Reporting Qualitative Research 21-item checklist (Sup-
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX
plemental Digital Content 1, Appendix A, http://links.
lww.com/JDBP/A443).17 The study was designed using
the tenets of grounded theory as its methodological ori-
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024
entation.18 Given the study’s exploratory nature, an in-
ductive approach was chosen to examine health-seeking
behaviors of autistic youth, an area of research that is not
well understood. Consensus discussions were used to
identify codes from focus group transcripts.19
Participants
Participants were members of an autistic patient ad-
vocacy board in a hospital-wide initiative to improve the
health care experiences of autistic patients. Therefore,
participants were selected using convenience sampling
approach. Participants were invited to an introductory
session, during which they were informed about the
research study.
Informed consent and parent permission forms were
sent electronically to participants and their caregivers.
We called participants and their caregivers to obtain
verbal consent and assent before the first focus group.
All participants who attended the introductory session
agreed to participate in the study.
Sample size was partly determined based on the-
matic saturation assessed using a code meaning
approach, which involved a review of emergent issue
and identification of new issues in subsequent ses-
sions.20 Transcripts were assessed for the extent to
which questions were comprehensively answered. All
participants were English-speaking and participated in
focus groups using verbal and/or written communi-
cation. Most participants’ autism diagnoses were self-
reported, and formal evidence of diagnosis was not
needed for study eligibility.
Table 1. Participant Demographics
Participants (N 5 8)
Race/ethnicity (N, %)
Asian-American 2 25
Caucasian/White 3 37
Prefer not to say 2 25
Two or more races 1 12
Preferred pronouns (N, %)
He/him/his 4 50
She/her/hers 4 50
Age (M, SD) 17.8 4.8
e40 Health Care Experiences of Autistic Youth
Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Four participants used “he/him/his” pronoun, and 4
used “she/her/hers” pronoun. At the first session in
January 2021, participants’ ages ranged from 10 years to
25 years, with a mean of 17.75 years (Table 1). We
purposefully did not segregate participants by age be-
cause all participants, except for 1, knew each other
before the study. Therefore, we opted to conduct natural
focus groups to preserve the existing social balance.15
Three participants identified as White, 2 identified as
Asian-American, and 1 as both Mexican and Asian-
American. Two participants chose not to identify their
race/ethnicity.
Data Collection
Between January and November 2021, 4 serial focus
groups were held in which the same participant group met
multiple times.16 Ninety-minute focus groups were con-
ducted virtually using the Zoom platform, and all 8 partic-
ipants engaged in every session. To ensure confidentiality,
caregivers were not present. Audio recordings was tran-
scribed and verified by 2 authors for accuracy. Participants
were assigned anonymous identifiers to promote tran-
scripts’ readability and investigate potential respondent-
based themes across focus group discussions.15
Semistructured focus group guide for the first 2
sessions was developed before the first session (Sup-
plemental Digital Content 1, Appendix B, http://links.
lww.com/JDBP/A444). The first session explored how
participants defined “health care” as well as partic-
ipants’ positive and negative health care experiences (e.
g., Can you share a time when you had a positive and
negative health care experience? When I say the word
“healthcare”, what comes to mind?). The second ses-
sion discussed strategies and accommodations that
could improve participants’ health care experiences (e.
g., How do you prepare for a doctor’s visit? How would
you like your doctor to explain a new procedure
to you?).
At the start of the second to fourth sessions, the fifth
author summarized content from the previous session,
and participants could share feedbacks. In the first ses-
sion, we used open-ended questions. However, open-
ended questions without answer choices did not work
well because they resulted in confusion, similar to other
research involving interviews of autistic individuals.21 To
reduce participant burden, we shortened questions,
provided visual prompts, and added answer choices that
included “other” or “it depends.”22 Most participants
responded to the multiple choice questions with “it
depends” and then elaborated on their answer. There-
fore, answer choices were helpful to encourage rich
discussions. Furthermore, to gather concrete insight into
participants’ perspective on plausible health care sce-
narios, we developed vignettes (e.g., seeing a different
clinician than the one who was scheduled for the ap-
pointment) and asked participants about how they
would feel in these situations.
Journal of Developmental & Behavioral Pediatrics
 Table 2. Qualitative Themes with Participant Quotes Extracted from Focus Groups Conducted with the Autism Friendly Initiative Patient Advocacy
Group
Theme Description Illustrative Quotes

Accessibility and accommodations Examples of suggested accessibility and
accommodations include the following:
 Waiting room accommodations
 Sensory accommodations
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX
“The only thing I can think is social story... Maybe like., first then [board]. First put in the gel,. then.
checkmark or a sticker or a star for completing every step. And then. like maybe saying and then like saying
you’re going to get a special prize after. process because I remember being motivated by rewards so that’s
perfect.”

“.Maybe if. there would be like a set of like sort of booths. If you literally just want to stay alone and do
 Hospital-wide accessibility something, then you can go into one of the booths. And it would be. a single light and maybe a bench.. If you
accommodation like really don’t like noise, but you don’t have claustrophobia, then, then you could just go in there and, I don’t
 Incentives know, do something on your phone?”
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024

 Alternative waiting spaces

 Specialized staff who are trained to
care for patients with disabilities
Barriers of health service use Barriers include the following: “I think [in a waiting room], there’s a, sometimes a lot of phone calls going off, and like, duh-duh-duh-duh-duh,
 Sensory barriers and. sometimes there’s a baby crying, and it’s just not the greatest place to be in the world.”

 Uncomfortable waiting rooms “. I mean, I can deal with [waiting rooms] now, but. it’s just a lot of extra sensory stimulation that just might
be too much.”
 Communication
 Unclear instruction
 The sight of medical tools and health
care staff in uniform
Patient involvement in health Preferences include the following: “I’m 18 [years old], so I’m learning how to become an adult. I generally. know. what I’m here for.
care decisions  Caregiver involvement preferences When I was younger, I didn’t really know like what. was going on.. But now I’m starting to learn. just
vary among participants a bit about like what’s going on and who to talk to and stuff.”

 Amount of information disclosed about
health procedures or diagnoses
 Resource preferences include pamphlets,
videos, and demonstrations
Facilitators of patient-clinician Facilitators include the following:
relationship  Trusting relationships with clinicians
 Clinicians who discuss treatment courses,
alternatives, and accommodations
 Clinicians who answer questions to
patient’s satisfaction
Additional quotes are included in the manuscript text.
“I know this is gonna vary for people, but I don’t think there should be much sugarcoating of [health procedures/
diagnoses] . I get that it might be scary, but. it’s important for both the patient and the doctor that you need
to know the full situation you’re going into.”
“. I’d rather [my clinician] take their time with me just to. make sure everything’s okay. And if there is
something, they’ll catch it.. I’d rather them catch something sooner rather than later cause it can still be
inside you without having any symptoms.”
“.I have the right to say no and get that respect, finding another alternative. If I don’t feel comfortable going
on the table, going on like the table to get checked up on, [the clinician] can’t just try to force me on the table..
I just don’t want them to like force me on the table if I prefer to be sitting here. I like them to try to work with that
or something.”

During the final session, we asked participants to initial codebook. Authors discussed their qualitative
identify qualities of a health care setting that were im- memos until a consensus was reached about which
portant to them as an autistic patient. This list was sub- topics should be included as codes.
sequently organized as an autistic patients’ bill of rights The initial codebook consisted of 6 high-level “parent
(Table 2). The activity started with a short prompt of “I codes,” namely accommodations, barriers, defining
have the right to.,” to which participants finished the health care, negative feelings about health care, patient
sentence with qualities they sought in health care. Par- preferences (e.g., having a caregiver present vs not), and
ticipants were guided through a list of topics, discussed patient-staff relations. “Defining healthcare” code was
in previous sessions, regarding the qualities of their de-
used to capture to how participants viewed the scope of
sired health care setting. The autistic patients’ bill of
their health care experience (e.g., proximal components
rights was summarized by the study team in collabora-
tion with participants who gave their approval for the such as medical procedures vs distal components such as
finalized list. insurance). “Patient-staff relations” code referred to
interactions participants had with clinicians, which were
Data Analysis further divided into positive and negative interactions.
The coding team consisted of 3 authors (first, second, The first author coded all 4 transcripts, whereas the
and third author), who participated in training for in- second and third authors coded 2 transcripts each using
ductive coding and thematic analysis. All authors con- NVivo12 software (Lumivero, Denver, CO). Each tran-
ducted qualitative memoing on 2 focus group transcripts script was double-coded by 2 authors to promote con-
and identified high-level topics to serve as codes in the sistent code application. All 3 authors met to reach

Vol. 45, No. 1, January 2024 Copyright Ó 2023 Wolters Kluwer Health, Inc. All rights reserved. e41

Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
 Table 3. Patients’ Bill of Rights Produced From the Fourth and Final Focus Group Session
I have the right to
1. Be treated with equal respect.
2. Advocate for what I need.
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX
3. Have my individual preferences and needs considered.
4. Understand what will happen before, during, and after my visit.
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024
5. Have all my questions answered.
6. For information to be explained in a way that I can best understand.
7. Be offered a quiet alternate waiting space whenever possible.
8. Accommodations for my individual sensory and communication needs.
9. Make requests that will help make my experience more positive.
10. A satisfactory health care experience.
consensus about the coding. If the 2 authors who coded
a transcript failed to reach consensus, the third author,
who did not code that transcript, served as tie breaker.
Thematic content analysis was performed based on
a close reading of the data. Authors developed qualitative
memos to summarize preliminary themes identified in
coded text. Preliminary themes identified from the
qualitative memos were presented, and consensus dis-
cussions were used to finalize themes across the data.
RESULTS
Four themes were generated through thematic con-
tent analysis, including accessibility and accom-
modations, barriers of health service use, patient
involvement in health care decisions, and facilitators of
patient-clinician relationship (Table 2). In collaboration
with participants, themes were further summarized as
a patients’ bill of rights (Table 3), consisting of state-
ments regarding participants’ desire to be heard, advo-
cate for themselves, and have individual needs
considered. The bill of rights activity was positively
perceived. One participant gave a “shoutout to just ev-
eryone, cause this [discussion] is going really smoothly.
This is a really good bill [of rights] that’s definitely gonna
change a lot.”
Accessibility and Accommodations
Accessibility included having knowledgeable staff
who are prepared to care for patients with disabilities.
Examples of accommodations included availability of
sensory items (e.g., stress ball, notebook) and flexibility
in clinical practices (e.g., alternative waiting space),
whenever possible.
e42 Health Care Experiences of Autistic Youth
Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Participants noted that they preferred clinicians who
offered “a verbal explanation while being open to
questions” and “talk[ing] about [medical procedure] in
person, [clinician] kind of . know[s] the information.
better than if you were to look it up or read about it.”
Participants also expressed appreciation when clinicians
gave them care options. One participant reflected, “I had
to go through a medical procedure, and then I could
choose from options, what I liked was that the doctor
would give me different options and explain them in full
and let me pick, although I sometimes ask them to pick
based on my needs.”
Participants liked having informational materials to
prepare them for a visit. One participant cited the im-
portance of having an opportunity to “talk about [the
procedure] and maybe demonstrate [it]. they can ex-
plain, like, example-wise.and show us.where this
goes, or what will happen.” Suggested informational
materials included pamphlets, videos, demonstrations/
modeling of procedures, and social stories, which are
short narratives with images conveying what one can
expect in a particular situation or when completing
a task.23
Participants also appreciated receiving incentives that
rewarded their participation in the visit. One participant
described how they “remember being motivated by
rewards” such as receiving “a checkmark or a sticker or
a star for completing every step” of the medical pro-
cedure. Finally, participants described how accom-
modations played a role in their experiences, specifically
when sitting in a waiting room before their appointment.
Most participants preferred to bring mobile phones to
distract or occupy themselves. Factors that would
Journal of Developmental & Behavioral Pediatrics
 improve participants’ experience when waiting include
having an alternative waiting space, which can be in the
form of a separate waiting room or allowing patients to
wait outside of the clinic (e.g., in their car).
Barriers of Health Service Use
Participants described factors that decreased their
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX
care satisfaction, namely sensory stimuli and communi-
cation challenges. Unpleasant sensory stimuli such as
loud noises and unpleasant smells or tastes led to over-
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024
stimulation. Participants commented on the cacophony
“of very annoying sounds” heard during their medical
visits. Participants described “a lot of phone calls going
off” and “sometimes there’s a baby crying.”
One participant described the waiting room as an “an
eerie place, especially when you’re. alone.” This
participant said that the waiting rooms they knew
were full of books and “half peeled-off stickers on
everything,” which is “just sort of disgusting.” An-
other participant highlighted how waiting rooms
increased their anxiety.
For those who are like very anxious about. the
health care appointment itself. being in a waiting
room can make them anxious because they’re
seeing. things that they associate with being in
a hospital... For me sometimes I can. smell the
alcohol wipes from the waiting room.. Smell can
trigger memories, good or bad.
Participants also described visual stimuli that could
evoke fear and anxiety, such as “the amount of tools [the
hospital] ha[s]. What are they going to do to me? Like
what is going on? Why do you need to use 15,000 tools?”
One participant described the sight of staff in personal
protective equipment as “very. intimidating, cause.
it’s. the clothes they’re wearing. the white jackets
and the masks. It can give like a rather spooky. vibe
about them..”
Preparation seemed important given that an un-
predictable medical encounter could be challenging re-
gardless of participants’ comfort level with a procedure.
For example, 2 participants reported feeling annoyed if
their visit involved unexpected injections. One partici-
pant said, “I’ve always just been afraid of needles.I’ve
gotten used to it over the years, but. definitely is still
something that I need to work on.I would just be
annoyed [to receive a shot].” Another participant recal-
led a medical visit when they learned they needed to
receive 2 shots, “I just learned that I was going to get 2
shots, like, in the middle of my appointment.. I was
pretty annoyed. but I tried to hold it together and say
that I’m okay with it.”
Finally, participants identified communication chal-
lenges. One participant described a previous experience
when unclear instructions during a dental procedure led
to them unintentionally request an additional shot of
sedative.
Vol. 45, No. 1, January 2024
Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
I had a cavity, and I was supposed to get it fixed, so
they. put some Novocain (sedative). After-
wards. the doctor said he was going to. drill
my tooth and he [asked me to] raise [my] hand if
it hurts. I did not understand how important that
was, so I just raised my hand recklessly.. He said
that he had to give me more Novocain and that is
when I flipped out.. I wouldn’t follow directions
and then I ended up not getting the cavity fixed
and it was painful..
In summary, sensory overstimulation and mis-
communication exacerbated negative feelings associated
with health care, which could affect perception of future
encounters.
Patient Involvement in Health Care Decisions
Generally, participants wanted to be involved in
health care decisions. However, participants’ prefer-
ences varied on how health information was first dis-
closed. Participants agreed that they wanted to be
accurately informed (i.e., “no sugarcoating”). However,
some participants were wary of graphic descriptions of
some medical procedures. One participant sug-
gested that,
. There might need to be at least a little bit of buff-
ering for. someone autistic. Like someone
would be very scared if the doctor went up to
you and said, okay, so you damaged this major
blood vessel. First things first, we’re going to have
to remove your brain, and, and, and cut open your
skull.
Participants had a positive perception of caregiver
involvement in health care. One participant said they
preferred their parent to speak with the clinician on
their behalf because they trust their judgment more than
their own, “Unless I know [what my body is experi-
encing] really well. because sometimes I’m not the best
reporter. So sometimes I have to trust my parents on the
judgement for how to handle my medical care.” This
participant also mentioned that having a family member
in the examination room “could help. support you if
you’re like feeling anxious. or if you’re not comfortable
sharing it, they can probably help you share the
information.. And if there’s any kind of information
that doesn’t sound clear.”
In addition, preference for caregiver involvement was
most prevalent regarding the logistical aspects of health
care (e.g., insurance paperwork). One participant said,
“it depends on the situation and what they’re exactly
talking about.I would like to know if there is something
going on because I am the patient.” The participant
qualified that sometimes they “don’t mind” if their
parents are involved in medical discussions “because also
my parents do. help manage my health.” Another par-
ticipant said caregiver involvement should be based on
Copyright Ó 2023 Wolters Kluwer Health, Inc. All rights reserved. e43
 age. “If you are old enough that you can understand
things., then it’s really important for the doctor to let
you know. But if you’re young, then it’s your parents’
responsibility.” Therefore, caregiver involvement
seemed to evolve as participants became more in-
dependent in managing their care.
Facilitators of Patient-Clinician Relationship
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX
A trusting patient-clinician relationship required re-
peated positive interactions over time and was key to
ensure participants’ comfort in discussing health matters.
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024
One participant reflected on their long-standing re-
lationship with their dentist.
[My dentist] is always making sure I was comfortable,
and he still does it this day. I remember that
when I had my wisdom teeth, and I couldn’t figure
out why my right side. was still hurt[in].. And
he was like trying to figure out why [I was] in so
much pain, [he was] going to get to the bottom
of this.
Participants acknowledged clinicians who went
above and beyond to ensure their comfort. For example,
1 participant described a clinician who they had seen
since they were young who was willing to discuss
mental health, although the topic was beyond the scope
of the original health appointment. The participant said
they had become “comfortable just to share a lot of
things with [the pediatrician], and not just my physical
health but also my well-being and personal struggles.”
The participant liked that their clinician “was always
listening and always giving me positive reinforcement
and encouragement and every time she would greet me,
she would give me a hug.” Participants indicated ap-
preciation to clinicians who set aside adequate time to
discuss treatment courses, potential alternatives,
accommodations, and answered questions to the
patient’s satisfaction.
DISCUSSION
Four themes were generated, namely accessibility and
accommodations, barriers of health service use, patient
involvement in health care decisions, and facilitators of
patient-clinician relationship. Similar to past studies,
knowledgeable staff and comfortable waiting environ-
ment could positively affect health care encounters.3
Other accommodations reported by past studies but
were not mentioned by participants included written/
visual materials and documentation of accommodations
in the electronic medical record.24,25
Conversely, reported barriers included communica-
tion challenges, fears/anxieties, and sensory barriers in
waiting rooms which aligned with past findings.3,24
Furthermore, waiting rooms could be particularly chal-
lenging for autistic patients; thus, efforts to improve the
comfort (e.g., developmentally appropriate toys/books)
can improve the health care experience.25,26 Barriers
e44 Health Care Experiences of Autistic Youth
Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
noted in other studies but not explicitly discussed by our
participants included stigma and socioeconomic deter-
minants of health.2,9
Previous research on autistic youth found self-
advocacy and independence as salient themes in transi-
tion to adulthood.27 We observed these themes when
participants reflected on caregiver involvement.
Researchers found that autistic adults may find logistical
demands of managing health care to be challenging (e.g.,
attending appointments).2 This topic was not as thor-
oughly discussed possibly because most participants
were largely supported by their caregivers.
Identified factors affecting patient-clinician rapport
were similar to those in past studies.9 Furthermore,
participants noticed clinicians who went above and be-
yond in their care. Positive interactions over time were
key to building rapport with clinicians and to an extent,
the larger health care system.
In addition, our findings suggest that meeting the
needs of autistic individuals does not always require
novel or elaborate interventions. Accommodations such
as individualized care and alternative waiting spaces
could benefit patients regardless of an autism diagnosis.
For example, independence and patient-clinician rapport
were also cited as important components for supporting
youth with other special health care needs.28 However,
understanding unique features of autism such as aversion
to sudden/unexpected transitions and sensory sensitiv-
ities can inform staff about aspects of care that require
additional attention. Such awareness may lead to more
effective collection of information about the patient’s
preferences and tailored accommodations (e.g., sensory
sensitivities/aversions, self-regulating strategies, pre-
ferred communication method).
Limitations included a small sample consisting of
English-speaking participants who were able to vocally
communicate their thoughts in a group setting. Therefore,
participants did not represent minimally verbal autistic
individuals, who represent about 30% of the autistic
population.29 However, findings overlapped with another
study involving parents of autistic youth who were mini-
mally verbal.30 Therefore, recommended approaches
could be relevant in supporting caregivers. Additional
research is needed to assess the transferability of findings
to other populations (e.g., other autistic persons’ health
care experiences, populations outside of the north-eastern
United States). The composition of socioeconomic, racial,
ethnic, and linguistic diversity may vary based on
geographical areas.
Finally, our study yielded insight on effective focus
group strategies for autistic youth. Providing answer
choices and vignettes were helpful in making questions
more concrete. The bill of rights activity may be successful
because it allowed participants to practice self-advocacy in
a safe setting with a clear and simple prompt. The bill of
rights content could be incorporated in staff training and
best practice guidelines in caring for autistic patients. It
summarized the study’s findings and directly
Journal of Developmental & Behavioral Pediatrics
 communicated autistic patients’ priorities in health care,
namely desire to be heard, self-advocate, and access tai-
lored accommodations. Its dissemination in clinic rooms
and websites may communicate that autistic patient voices
are valued. However, it is also important to note that the
content may not resonate with all autistic patients.
In conclusion, autistic youth reported health care
facilitators and barriers similar to past studies.3,9 Some
Downloaded from http://journals.lww.com/jrnldbp by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX
accommodations could improve care satisfaction short-
term (e.g., sensory items). However, quality rapport took
time to develop. It is important to emphasize not only
1AWnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8K2+Ya6H515kE= on 03/09/2024
the availability but also sustainability of health care
improvements for autistic youth. We hope that this study
can provide context to more developed understanding
of autistic youth’s health care needs. Future research is
needed to assess the extent to which autistic youth’s
priorities are reflected in care improvement efforts and
avenues to increase collaboration between health pro-
fessionals and the autistic community.
ACKNOWLEDGMENTS
The authors would like to thank members of the Autism Friendly
Initiative Scientific Advisory Board for their assistance and guidance
in study conceptualization. The authors would also like to thank
members of our patient advocacy group, Teens Educating, Advocat-
ing, and Consulting in Health care (TEACH), for participating in the
study and providing important insights regarding this topic. This
research did not receive any specific grant from funding agencies in
the public, commercial, or not-for-profit sectors.
REFERENCES
1. Malik-Soni N, Shaker A, Luck H, et al. Tackling healthcare access
barriers for individuals with autism from diagnosis to adulthood.
Pediatr Res. 2022;91:1028–1035.
2. Mason D, Ingham B, Urbanowicz A, et al. A systematic review of
what barriers and facilitators prevent and enable physical
healthcare services access for autistic adults. J Autism Dev Disord.
2019;49:3387–3400.
3. Walsh C, Lydon S, O’Dowd E, et al. Barriers to healthcare for persons
with autism: a systematic review of the literature and development of
A taxonomy. Develop Neurorehabil. 2020;23:413–430.
4. Ames JL, Massolo ML, Davignon MN, et al. Healthcare service
utilization and cost among transition-age youth with autism
spectrum disorder and other special healthcare needs. Autism.
2021;25:705–718.
5. Davignon MN, Qian Y, Massolo M, et al. Psychiatric and medical
conditions in transition-aged individuals with ASD. Pediatrics.
2018;141(suppl 4):S335–S345.
6. Strunk JA, Pickler R, McCain NL, et al. Managing the health care
needs of adolescents with autism spectrum disorder: the parents’
experience. Families, Syst Health. 2014;32:328–337.
7. Wilson SA, Peterson CC. Medical care experiences of children with
autism and their parents: a scoping review. Child Care Health
Develop. 2018;44:807–817.
8. Mason D, Ingham B, Birtles H, et al. How to improve healthcare for
autistic people: a qualitative study of the views of autistic people
and clinicians. Autism. 2021;25:774–785.
9. Nicolaidis C, Raymaker DM, Ashkenazy E, et al. Respect the way I
need to communicate with you”: healthcare experiences of adults
on the autism spectrum. Autism. 2015;19:824–831.
10. Saqr Y, Braun E, Porter K, et al. Addressing medical needs of
adolescents and adults with autism spectrum disorders in a primary
care setting. Autism. 2018;22:51–61.
Vol. 45, No. 1, January 2024
Copyright © 2023 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
11. Vogan V, Lake JK, Tint A, et al. Tracking health care service use and
the experiences of adults with autism spectrum disorder without
intellectual disability: a longitudinal study of service rates, barriers
and satisfaction. Disabil Health J. 2017;10:264–270.
12. Ames JL, Massolo ML, Davignon MN, et al. Transitioning youth with
autism spectrum disorders and other special health care needs into
adult primary care: a provider survey. Autism. Published online
June 18, 2020;25:731–743.
13. Cheak-Zamora NC, Teti M. “You think it’s hard now . it gets much
harder for our children”: youth with autism and their caregiver’s
perspectives of health care transition services. Autism. 2015;19:
992–1001.
14. Mazurek MO, Stobbe G, Loftin R, et al. ECHO Autism Transition:
enhancing healthcare for adolescents and young adults with autism
spectrum disorder. Autism. 2020;24:633–644.
15. Green J, Thorogood N. Qualitative Methods for Health Research.
4th ed. London, UK: SAGE Publications Ltd; 2018.
16. Baden C, Pasitselska O, Aharoni T, et al. Serial focus groups:
a longitudinal design for studying interactive discourse. Int J Qual
Methods. 2022;21:16094069221118766.
17. O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting
qualitative research: a synthesis of recommendations. Acad Med.
2014;89:1245–1251.
18. Glaser BG, Strauss AL. The Discovery of Grounded Theory:
Strategies for Qualitative Research. Piscataway, NJ: Aldine; 1967.
19. Cascio MA, Lee E, Vaudrin N, et al. A team-based approach to open
coding: considerations for creating intercoder consensus. Field
Methods. 2019;31:116–130.
20. Hennink MM, Kaiser BN, Marconi VC. Code saturation versus
meaning saturation: how many interviews are enough? Qual
Health Res. 2017;27:591–608.
21. Norris JE, Crane L, Maras K. Interviewing autistic adults:
adaptations to support recall in police, employment, and
healthcare interviews. Autism. 2020;24:1506–1520.
22. Courchesne V, Tesfaye R, Mirenda P, et al. Autism Voices: a novel
method to access first-person perspective of autistic youth. Autism.
2021;26:1123–1136.
23. Gray CA, Garand JD. Social stories: improving responses of students
with autism with accurate social information. Focus Autistic
Behav. 1993;8:1–10.
24. Haydon C, Doherty M, Davidson IA. Autism: making reasonable
adjustments in healthcare. Br J Hosp Med. 2021;82:1–11.
25. Straus J, Coburn S, Maskell S, et al. Medical encounters for youth
with autism spectrum disorder: a comprehensive review of
environmental considerations and interventions. Clin Med Insights:
Pediatr. 2019;13:1179556519842816.
26. Boshoff K, Bowen-Salter H, Gibbs D, et al. A meta-synthesis of how
parents of children with autism describe their experience of
accessing and using routine healthcare services for their children.
Health Soc Care Community. 2021;29:1668–1682.
27. Lee GK, Curtiss SL, Kuo HJ, et al. The role of acceptance in the
transition to adulthood: a multi-informant comparison of
practitioners, families, and youth with autism. J Autism Dev
Disord. 2021;52:1444–1457.
28. Wang G, McGrath BB, Watts C. Health care transitions among
youth with disabilities or special health care needs: an ecological
approach. J Pediatr Nurs. 2010;25:505–550.
29. Tager-Flusberg H, Kasari C. Minimally verbal school-aged children
with autism spectrum disorder: the neglected end of the spectrum.
Autism Res. 2013;6:468–478.
30. Mazurek MO, Sadikova E, Cheak-Zamora N, et al. They deserve the
“same level of care that any other person deserves”: caregiver
perspectives on healthcare for adults on the autism spectrum. Res
Autism Spectr Disord. 2021;89:101862.
Copyright Ó 2023 Wolters Kluwer Health, Inc. All rights reserved. e45