Journal of Autism and Developmental Disorders

https://doi.org/10.1007/s10803-020-04399-2

BRIEF REPORT

Health Disparities Among Sexual and Gender Minorities with Autism

Spectrum Disorder
Jean P. Hall1,2   · Katie Batza3 · Carl G. Streed Jr.4,5 · Brian A. Boyd2,6 · Noelle K. Kurth1

© Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract
We explored the health and health care experiences of people with autism spectrum disorder (ASD) who identify as lesbian,
gay, bisexual, transgender, or queer (LGBTQ+) using data from a national, internet-based survey of adults with disabilities
supplemented by focused interviews. LGBTQ+ respondents had significantly higher rates of mental illness, poor physical
health days per month, and smoking compared to straight, cisgender respondents with ASD. LGBTQ+ respondents also
reported much higher rates of unmet health care need, inadequate insurance provider networks, and rates of being refused
services by a medical provider. Examining the intersection of LGBTQ+ identity and ASD reveals compounded health dis-
parities that insurers and medical providers are not adequately addressing, particularly as individuals transition to the adult
medical system.

Keywords  Health disparities · Autism spectrum disorder · LGBTQ+

People living with disabilities, including autism spectrum
disorder (ASD), experience multiple, systemic barriers to
accessing appropriate health care, including lack of provid-
ers knowledgeable about ASD and fear of stigmatization,
which consequently contribute to poorer health outcomes
(e.g., increased morbidity and early mortality) (Krahn et al.
2015; Nicolaidis et al. 2015; Bishop-Fitzpatrick and Kind
2017). Sexual and gender minorities [i.e., lesbian, gay,
* Jean P. Hall
jhall@ku.edu
1
Institute for Health & Disability Policy Studies, University
of Kansas, 1000 Sunnyside Ave, Lawrence, KS 66045, USA
2
Department of Applied Behavioral Science, University
of Kansas, Lawrence, KS, USA
3
Department of Women, Gender and Sexuality Studies,
University of Kansas, 318 Blake Hall, 1541 Lilac Lane,
Lawrence, KS 66045, USA
4
Boston University School of Medicine, 72 East Concord St,
Boston, MA 02118, USA
5
Center for Transgender Medicine & Surgery, Section
of General Internal Medicine, Boston Medical Center,
Boston, MA, USA
6
Juniper Gardens Children’s Project, University of Kansas
Life Span Institute, 444 Minnesota Ave, Ste 300,
Kansas City, KS 666101, USA
bisexual, transgender, or queer (LGBTQ +)] similarly face
multiple, systemic and long-standing barriers to appropriate
health care (Batza 2018; Streed et al. 2019). Access to health
care and health disparities for people with combined ASD
and LGBTQ+ identities, however, are not well understood.
To better understand the health and health care access
experiences of all adults living with disabilities after imple-
mentation of the Affordable Care Act, two of the authors led
the development and administration of the National Survey
on Health and Disability (NSHD) (Hall and Kurth 2019). In
exploring respondent demographics, the authors noted a high
rate of self-reported LGBTQ+ identities among people with
ASD. This co-occurrence has been noted by other research-
ers, especially internationally and among adolescents with
ASD (e.g., Turner et al. 2017). Given the health disparities
for LGBTQ+ individuals and those with ASD, we sought
to explore whether the intersectionality of these two groups
was associated with poorer health than seen among people
with ASD alone. Therefore, this paper reports preliminary
results from the first administration of the survey in 2018,
focusing on findings related to respondents with ASD who
reported being LGBTQ+ as compared to respondents with
ASD who were not LGBTQ+.

13
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Methods
The  NSHD is a national, internet-based survey fielded
between February and June 2018. Participants were
recruited through more than 50 national and state disability
organizations, multiple national listservs and newsletters,
national disability conferences, and social media. Respond-
ents represent Americans with a wide variety of disabilities
between the ages of 18 and 62 years-of-age. The total sample
size was 1246. Quantitative data were analyzed using SPSS
version 24.
The survey includes questions from other national public
and private survey instruments such as the Behavioral Risk Fac-
tor Surveillance System (BRFSS), the National Health Inter-
view Survey (NHIS), the Health Reform Monitoring Survey
(HRMS) and questions previously used by the authors (see
Table 1). The entire survey was pilot-tested by people with a
variety of disabilities. For most respondents, the survey took
about 20 min to complete, but skip patterns can result in vary-
ing numbers of questions for respondents and overall time to
complete. The inclusion criteria for participation in the survey
included: (1) giving a “yes” response to the question, “Do you
have a physical condition, mental illness, impairment, disability
or chronic health condition that can affect your daily activities
or that requires you to use special equipment or devices, such
as a wheelchair, walker, TDD or communication device?”; (2)
being ages 18–62; and (3) residing in the United States.
Additionally, we conducted five semi-structured tel-
ephone interviews to better understand experiences of peo-
ple with ASD who identify as LGBTQ+ and to contextual-
ize survey data. This interview sample was part of a larger
sample of working age adults with all types of disabilities
recruited through the same disability organizations as for
the survey (Hall et al. 2019); interview participants may or
may not have completed the survey. Content analysis (For-
man and Damschroder 2007; Hsieh and Shannon 2005) was
conducted to identify major interview themes from the larger
interview sample (Hall et al. 2019). Themes for the ASD
and LGBTQ+ subsample were derived separately using the
same methods and are reported here. The average length of
the five interviews was about 37 min (range 22–47).
The University of Kansas IRB approved all survey and
interview data collection and study procedures. All partici-
pants in the study provided informed consent.
Results
Survey
A large proportion of respondents who self-reported ASD
also identified as LGBTQ+ (35%, 19/54). Respondents
13
Journal of Autism and Developmental Disorders
with ASD who identified as LGBTQ+ experienced worse
health and health care access barriers compared to straight,
cisgender respondents with ASD (Table 2).
LGBTQ+ respondents with ASD were more than twice
as likely to self-report a mental illness/psychiatric condi-
tion and reported twice as many poor physical health days
per month compared to straight, cisgender respondents
with ASD. LGBTQ+ respondents with ASD also reported
smoking rates almost ten-times those of straight, cisgender
respondents with ASD (26.3% versus 2.9%, respectively,
p < 0.05). At the same time, LGBTQ+ respondents with
ASD reported significantly higher rates of college com-
pletion. While all LGBTQ+ respondents with ASD and
most straight, cisgender respondents with ASD reported
having health insurance, LGBTQ+ respondents with
ASD reported much higher rates of unmet health care
need, including seeing a doctor or specialist and obtain-
ing prescriptions. LGBTQ+ respondents with ASD were
also significantly more likely to report that their insurance
provider network was inadequate. In turn, they were sig-
nificantly more likely to report that a doctor/provider did
not accept their insurance. More troubling is the fact that
35.7% of LGBTQ+ respondents with ASD reported being
refused services by a medical provider (compared to 20%
of straight, cisgender respondents with ASD). Refusal of
services by a provider was reported separately from non-
coverage by insurance or providers not accepting insur-
ance (see Table 1); the majority of LGBTQ+ respondents
who reported being refused services by a provider did not
report that insurance did not cover the service or that the
provider did not accept the insurance. This finding regard-
ing refusal of services was affirmed by interview partici-
pants, without direct prompts.
Interviews
Content from interviews with individuals identifying as
LGBTQ+ and having autism was used to better understand
and augment the quantitative findings from the survey.
Themes arising from the interviews included inadequate/
inappropriate care from the medical system, with three
interviewees reporting being refused medical services
outright. Four interviewees reported deciding not to dis-
close their diagnosis of ASD and/or sexual orientation or
gender identity due to previous negative experiences; and
one contrasted how access to services differed with private
insurance versus Medicaid. Selected quotes from inter-
viewees are included below by theme.
Journal of Autism and Developmental Disorders

Table 1  Survey and interview items utilized in this study

Interview items Prompts, as needed

Please tell me about your current health insurance coverage • How long have you had this coverage?
• What kind of insurance did you have before, if any?
• Does this coverage have a deductible, co-pays, co-insurance, other out-of-
pockets costs?
Please tell me about any challenges or barriers you have encountered in getting the • How is the provider network?
health care that you need • Do you have visit limits on any services?
• Do you have coverage for prescriptions you need?
• Do you use personal assistance services?
• Is transportation ever a barrier?
Have your employment or decisions about working or how much you want to work
been affected by your health insurance or access to care? How so?
What one service of support is most important or crucial for you to have in order to
maintain or improve your health so you can live independently and do the things
you want to do in your community?
What information do you need regarding health insurance options? And/or where
do you get information about your current coverage?
What would you like to tell policy-makers about access to health insurance and
health care services for people with disabilities?
Survey items Possible responses

Health ­statusa
 In general would you say your health is… Excellent; very good; good; fair; poor
 Thinking about your physical health, which includes physical illness of injury, 0–30
for how many days during the past 30 days was your physical health NOT
good?
 Thinking about your mental health, which includes stress, depression, and 0–30
problems with emotions, for how many days during the past 30 days was your
physical health NOT good?
Access to health ­careb
 In the past 12 months have you been able to get all the prescription medications Yes; No; I don’t know; I do not take any prescription medications
you need with your health insurance plan(s)?
 A specialist is a doctor who focuses on a specific disease, such as heart disease Yes; No; I don’t know; I do not need to see any specialists
or cancer, or a particular technique, such as surgery or gynecology
In the past 12 months have you been able to see the specialists you need to with
your health insurance plan(s)?
 In the past 12 months, have you been able to get the dental services you need Yes; No; I don’t know; I do not need to see a dentist
with your health insurance plan(s)
 Preventive health services are procedures and tests that can detect certain condi- Yes; No; I don’t know; I choose not to get preventative health services
tions or diseases and should be conducted regularly. Examples of preventive
services include mammogram, bone density, colorectal screening, pap smear,
PSA blood tests, etc
In the past 12 months, have you been able to get all the preventive health services
and tests that you need?
 A provider network is a list of the doctors, hospitals, and other health care pro- Yes; No; I don’t know
viders that an insurance company uses to provide medical care to its members
In the past 12 months has the provider network for your health insurance plan(s)
been adequate enough to meet all your needs?
 You reported that you were not able to get some of the medical services or equip- Could not afford it/too expensive; my insurance would not approve or pay for
ment that you have needed in the past 12 months. What are the reasons for this what I needed; doctor/provider would not take my insurance; problems get-
unmet need(s)? ting to the doctor/provider’s office; language/communication barriers; could
Mark all that apply not get time off work to go to the doctor/provider; I don’t know where to go
to get services; I was refused services by a provider; I could not get child care
so I could go to appointments; did not have enough time or it took too long to
get the needed care; I don’t know; other reasons (if selected, open-ended text
box provided for response)

a
 Behavioral Risk Factor Surveillance System (BRFSS), CDC
b
 Health Reform Monitoring Survey (HRMS), The Urban Institute

13
 Journal of Autism and Developmental Disorders

Table 2  Survey respondent demographics, insurance coverage and unmet needs experienced by adults with autism spectrum disorder by
LGBTQ+ identity
Characteristic LGBTQ+ (N = 19) Non-LGBTQ+ (N = 35) pa

Respondent demographics
 Mean age (range), years 31.1 (20–49) 30.2 (18–58) 0.747
 Gender, %
  Female 36.8 40.0  < 0.001
  Male 26.3 60.0
  Other 36.8 0.0
 Education Level, % with college degree 68.4 35.5  < 0.05
 Race/ethnicity, % non-white 31.6 20.0 0.342
 Disability ­typeb, %c
  Autism spectrum disorder 100.0 100.0 1.00
  Mental illness/psychiatricd 78.9 34.3  < 0.01
  Chronic illness/diseasee 47.4 31.4 0.247
  Physicalf 21.1 5.7 0.087
  Neurologicalg 10.5 22.9 0.265
  Intellectual or d­ evelopmentalh 5.3 25.7 0.105
  Sensoryi 0.0 2.9 0.475
Smokes or uses tobacco products 26.3 2.9  < 0.05
Days physical health not good out of last 30, mean 11.1 5.1  < 0.05
Days mental health not good out of last 30, mean 17.7 14.0 0.236
Insurance ­coveragej
 No insurance coverage, % 0.0 8.6 0.171
 Employer-sponsored insurance, % 38.9 42.9 0.781
 Through family member’s employer, % 57.1 66.7 0.254
 Marketplace purchased insurance, % 15.8 0.0 0.001
 Medicare, % 10.5 20.0 0.282
 Medicaid, % 47.4 55.9 0.552
 TRICARE/VA, % 10.5 5.7 0.0519
Unmet need with ­insurancek
 Unable to see a doctor, % 47.1 12.5  < 0.01
 Unable to get needed prescriptions, % 38.9 10.0  < 0.05
 Unable to see necessary specialists, % 40.0 12.5  < 0.05
 Unable to get preventive health services, % 35.7 11.1 0.059
 Inadequate provider network 56.3 22.2  < 0.05
 At least one unmet need of those listed above, % 73.7 43.8  < 0.05
Reasons for unmet needk
 Too expensive/couldn’t afford, % 57.1 60.0 0.407
 Insurance would not cover/approve service, % 50.0 73.3 0.540
 Doctor/provider would not accept my insurance, % 50.0 20.0  < 0.01
 I was refused services by a provider, % 35.7 20.0 0.058
 It took too long to get needed services/care, % 21.4 40.9 0.283

a
 p value calculated using chi-square and ANOVA
b
 Respondents self-reported their disability or chronic health condition in their own words. These data focus on those who reported autism spec-
trum disorder with additional conditions listed by respondents being categorized into 6 additional types by two of the authors
c
 Total does not equal 100% due to respondents reporting more than one disability or health condition
d
 Mental Illness/Psychiatric category includes conditions such as bi-polar disorder, schizophrenia, major depression, disassociate identity disor-
der, anxiety, etc.
e
 Chronic illness or disease category includes conditions such as cancers, diabetes, COPD, Ehlers-Danlos syndrome, cardiovascular disease, HIV/
AIDS, etc.
f
 Physical category includes conditions such as muscular dystrophy, achondroplasia, osteoporosis, arthritis, limb loss or amputation, etc.
g
 Neurological category includes conditions such as multiple sclerosis, cerebral palsy, spinal cord injury, Parkinson’s, spina bifida, ADHD, trau-
matic brain injury, paraplegia, quadriplegia, epilepsy, stroke, etc.
h
 Intellectual or Developmental category includes conditions such as Down Syndrome, Fragile X syndrome, and other intellectual disabilities

13
Journal of Autism and Developmental Disorders
Table 2  (continued)
i
 Sensory category includes conditions such as deafness/hard of hearing, blindness/low vision and/or partial blindness or deafness
j
 Total does not equal 100% due to multiple response, as some individuals reported more than one type of insurance coverage
k
 Valid n varies due to skip patterns based on responses to earlier questions, i.e., if respondent reported being able to get all needed services, he or
she was not asked reasons for unmet need
Inappropriate Care
• “If I’m just a queer disabled person and I’m just going to
my regular provider, not only are they going to assume
that I’m not having sex, but they’re also not going to
provide any accurate information there.”—gay, white,
cisgender male, age 32
• “I’ve actually, literally, never had an OB/GYN exam and
I need to, and I think one of the reasons I’ve never had
one done is because I was fucking seeing a pediatrician
[at age 23]… because didn’t you know that autistic peo-
ple become adults?… It’s also really difficult even for
assigned female at birth nonbinary to be able to access
gender affirming OBGYN, that’s why I’ve been putting
off finding an OBGYN for so long. Because I know that
it’s going to be really fucking difficult to find an OBGYN
who is affirming of my nonbinary identity, and who is
not going to, like that nurse practitioner [they had seen
earlier], just keep referring to me with highly female gen-
dered language. Um, which is really dysphoric for me
and makes seeing the provider at best a very unpleasant
experience. And at worst like actively kind of traumatiz-
ing.” —non-binary, Asian, age 25
• “They [medical providers] need to listen to disabled peo-
ple but respectfully with an open mind. And they need
to not do things like assume that just because someone’s
autistic that they don’t understand their gender iden-
tity, that they can’t be like, oh you can’t be transgender
because you’re autistic.”—genderqueer, African Ameri-
can, age 40
• “The questions they [medical providers] ask you are
still very hetero-normative, are still very cis-normative.
And you aren’t receiving health care as a queer or trans
person, you’re treated as you appear to be. And so even
though there are queer people within the system, it’s still
not set up to address those issues.” non-binary, white, age
32.
Refusal of Care
• “They actually do cover trans healthcare here in [state],
but it varies, the scope of who you can see, the doctors
are flooded because there are only 1 or 2 doctors in the
entire region. You can go to a regular doctor and they’ll
refuse your care.” transgender African American, age 39
Non‑disclosure
• “I have a much worse quality of care if a medical pro-
vider knows that I’m autistic, so none of my providers
know… There is a… difference in… how I understand
my peers have been treated, my siblings, how my younger
brother is treated. So, when I was a teenager and had my
parents with me, health care providers refused to speak
with me, to give me any information.” gay, white cisgen-
der male, age 32
Insurance Coverage
• [after obtaining Medicaid] “I’m getting better health-
care than I was [with employer-based coverage] by far.”
transgender African American, age 39
With regard to insurance and access to services, the sur-
vey findings indicate that LGBTQ+ respondents with ASD
were more likely to have private insurance (i.e., employer-
based or ACA Marketplace) while straight, cisgender
respondents with ASD were more likely to have public
insurance (i.e., Medicare or Medicaid). In combination, the
survey data and interviews suggest private insurance less
adequately covers the medical needs of LGBTQ+ persons
with ASD, who reported much higher rates of unmet need
and inadequate provider networks than did other respondents
with ASD. Findings could also suggest that providers who
accept Medicare and Medicaid are better prepared to care
for people with ASD alone, given this group’s lower rates
of unmet need and refusal of services.
Discussion
While prior studies have found high rates of people with
ASD identifying as LGBTQ+, these studies were primar-
ily conducted outside of the US, focused on children and
adolescents, and rarely considered barriers to accessing
appropriate health care for this age group (Turner et al.
2017; Glidden et al. 2016; de Vries et al. 2010). Further,
while other studies have noted worse health for LGBTQ+
people who also have disabilities, none have focused spe-
cifically on LGBTQ+ people who have ASD (Burgwal
et al. 2019; Fredriksen-Goldsen et al. 2013). Indeed, a
recent scoping review of health disparities for people with
13

ASD (Bishop‑Fitzpatrick and Kind 2017) specifically
noted the dearth of research on health disparities for this
intersectional population.
Together, the survey data and focused interviews make
a compelling case that American adults with ASD who
also identify as LGBTQ+ lack adequate health care ser-
vices and experience worse health than their straight, cis-
gender peers with ASD. Despite having higher educational
attainment, the ASD/LGBTQ+ group reported greater
rates of mental illnesses and smoking and poorer over-
all health. These findings are in direct contrast to a large
body of work demonstrating better health and lower rates
of depression and smoking among individuals with more
education (e.g., Conti et al. 2010). Drilling down into the
data, we found that four of the ASD/LGBTQ respondents
(21%) and 1 of the ASD-only respondents (3%) reported
having post-traumatic stress disorder. Given the docu-
mented higher rates of PTSD among sexual and gender
minorities (e.g., Roberts et al. 2012), it seems likely that
at least some of the greater incidence of mental illnesses
in the LGBTQ+ sample is related to their LGBTQ+ status.
Overall, however, it is difficult to disentangle which factors
specifically and directly contribute to worse self-reported
health and access to care for this small subpopulation of
LGBTQ+ people with ASD.
At the same time, interview findings suggest that reluc-
tance to seek health care by this population may be linked
to previous negative experiences and attitudes of providers.
Interestingly, some interview participants felt that medical
providers were more accepting of gender and sexual minori-
ties, “I would say it’s harder to find a provider who is sensi-
tive to disability,” while others felt that their providers were
more accepting of people with disabilities, “medical profes-
sionals and those within the health community are way more
aware of disability issues because it is all so health-related.”
Sometimes, though, the issues were inextricably linked, such
as providers doubting whether a person with autism could
truly understand his or her sexuality. Overall, the interviews
suggest there is inadequate training of health care profes-
sionals to meet the needs of LGBTQ+ persons and/or those
with ASD (Streed and Davis 2018; Havercamp et al. 2016).
More data are needed to further support and understand
the findings from this study. The NSHD was fielded again
at the end of 2019 and, in light of the preliminary findings
of this study, the authors added items regarding experiences
and relationships those with and without ASD who iden-
tify as LGBTQ+ have with their medical providers. Not
only will this second administration provide further details
regarding these individuals’ experiences, but also longitu-
dinal data and a larger sample size for this important and
often under-represented subgroup of the overall disability
population. In addition to the relatively small sample size,
13
Journal of Autism and Developmental Disorders
a possible limitation of the study is that it relies on self-
reported disability types, including self-reported ASD.
While most research on sexual orientation and gender
identity for people with ASD focuses on youth, respondents
to this survey are adults and utilizing the adult medical sys-
tem. Insurers and medical providers have a responsibility to
continue meeting the needs of this intersectional group into
adulthood even as the fraught historic relationship between
medical providers and LGBTQ+ people, with and without
disabilities, makes it more challenging. Medical profession-
als should be mindful of the challenges that adults with ASD
encounter in accessing health care services and seek to make
their practices welcoming and inclusive (Warfield et al.
2015). Health disparities for the newly recognized intersec-
tional group of people with ASD who are LGBTQ+ will
only improve if such changes to the adult medical system
are made.
Acknowledgments  The National Survey on Health and Disability
(NSHD) and national interviews are part of the Collaborative on
Health Reform and Independent Living (CHRIL). CHRIL is funded
by a 5-year Disability and Rehabilitation Research Program (DRRP)
grant from the National Institute on Disability, Independent Living, and
Rehabilitation Research (NIDILRR, #90DP0075-01–00). The contents
do not necessarily represent the policy of NIDILRR, ACL, HSS and
you should not assume endorsement by the federal government.
Author Contributions  Study conception and design as well as data col-
lection, analysis and interpretation were performed by JPH and NKK.
The first draft of the manuscript was written by JPH and all authors
read, edited, and approved the final manuscript.
Compliance with Ethical Standards 
Ethical Approval  All procedures performed in this study involving
human participants were in accordance with the ethical standards of
the Institutional Review Board at the University of Kansas (Study#
00004253) and with the 1964 Helsinki declaration and its later amend-
ments or comparable ethical standards.
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