DOI: 10.1363/psrh.

12221

ARTICLE

Sexual and reproductive health services for autistic young

people in the United States: A conceptual model of utilization

Laura Graham Holmes 1,2 | Kristy Anderson 1,3 | Greg S. Sieber 1 | Paul T. Shattuck 4

1
A.J. Drexel Autism Institute, Drexel
University, Philadelphia, Pennsylvania, USA Abstract
2
Silberman School of Social Work, Hunter Background: Sexual and reproductive health services promote the ability of people
College, City University of New York, New
York City, New York, USA
to have safe, satisfying, non-coercive sexual experiences and make informed deci-
3
Florida State University College of Social sions about pregnancy. Stakeholder input is needed to understand barriers or facilita-
Work, Tallahassee, Florida, USA tors to service access for autistic people, who report unmet needs.
4
Mathematica Policy Research, Princeton,
Methods: We recruited 18 autistic people, 15 parents, and 15 service providers in
New Jersey, USA
the United States to participate in an interview and two surveys. Using their input,
Correspondence we created a conceptual model of sexual and reproductive health service needs,
Laura Graham Holmes, A.J. Drexel Autism
Institute, Drexel University, Philadelphia, PA, access barriers, and facilitators.
USA. Results: Stakeholders rated a variety of sexual and reproductive health services as
Email: [email protected]
important for autistic people, including those with intellectual disability or minimal
Funding information verbal language. Stakeholders identified barriers to sexual and reproductive health
Organization for Autism Research
service utilization including lack of service availability, lack of service providers with
autism or neurodiversity training, lack of accurate information about autism and sex-
uality, verbal and communication differences that are not accommodated by service
providers, and socio-cultural attitudes about sexuality. Stakeholders identified facili-
tators to service access including person-centered, trauma-informed care, service
accommodations such as clear and detailed expectations, and long-enough appoint-
ments. We created a conceptual model based on the social ecological model of
health to organize these utilization factors and support future research, provider, and
policy action. Stakeholders provided feedback and responded favorably on the
model’s accuracy, utility for spurring research, practice, and policy improvements,
and application to diverse groups of autistic people.
Conclusions: The model shows the many feasible ways to support equitable access
to services for autistic people.

I N T R O D U CT I O N experience sexual attraction5,6 and many are sexually active,7–12

including teens.13 Up to 70% of autistic cisgender teenage boys have
Sexuality and relationships are central aspects of health and well- engaged in partnered sexual behavior14,15 and one study found that
being across the life course. Sexual attraction and partnered activity autistic cisgender teenage girls had comparable sexual activity to non-
are part of normal adolescent development, including for youth with autistic teenage girls.6 Although there is an emerging focus on autistic
disabilities such as autism.1–3 Based on child epidemiological data, adolescent and adult healthcare,16–20 sexual and reproductive health
approximately 2.3% of the United States (US) population is autistic (SRH) has received little attention.21 Limited empirical research that
4
and each year 95,000 autistic youth turn 18. Most autistic people examines associations between SRH, romantic relationships, and

Perspect Sex Reprod Health. 2023;55:49–61. wileyonlinelibrary.com/journal/psrh © 2023 University of Ottawa. 49

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50 SERVICE MODEL FOR AUTISTIC PEOPLE

other functional outcomes impedes the ability of clinicians and policy- on the social ecological health framework using input from stake-
makers to promote comprehensive health and well-being for autistic holders to guide research and development efforts in SRH services for
youth and adults. In this paper, we use identity-first language to autistic young people.
reflect that a growing autistic self-advocacy movement has challenged Social ecological health frameworks position individuals as
deficits-oriented definitions and understandings of autism and has embedded within multiple hierarchical levels of influence: intraper-
offered an alternative interpretive framework emphasizing autistic dif- sonal, interpersonal, institutional, community, and public policy.37,38
ferences (some of which are strengths in specific social contexts) as Conceptual models based on social ecological approaches are useful
aspects of natural neurological variation (neurodiversity) that are for identifying relationships between factors that affect youth’s access
often inextricably linked to identity.22 to services and crafting interventions to promote health equity.39–41
Moving beyond a focus on lifestyle or individual choice in health out-
comes, social ecological health models acknowledge the importance
Sexual and reproductive health for autistic youth of social norms, institutions, systems, and policies that influence
health.38 Disability researchers have relied on social ecological health
The World Health Organization defines SRH as optimal physical, men- models to describe how the transition to adulthood is affected by
tal, and social outcomes across the life course, a positive approach reciprocal transactions between an individual’s characteristics
that includes the absence or management of disease and dysfunc- (e.g., knowledge, attitudes, behavior, self-concept, and developmental
tion.23 Central is the ability to have safe, satisfying, and non-coercive history) and the systems in which they are embedded.42–47
sexual experiences and to implement informed decisions about repro- A social ecological approach to service access and health promo-
duction. A variety of services support these goals, including peer sex tion highlights opportunities for comprehensive, multilevel interven-
education programs, cancer screenings, and school-based sexual tions. In health outcomes research, the specific changes sought
health clinics. Targeting sexual health during the transition to adult- indicate the level(s) of influence that intervention should seek to act
hood can prevent cascading effects of sexual victimization and health- upon. Intrapersonal factors include individual characteristics and devel-
risking behaviors.24 opmental history; interventions aimed at this level generally target
Emerging research suggests that many autistic people are denied knowledge, attitudes, self-efficacy, or skills.39 Interventions targeting
equitable access to SRH services during adolescence and over their life- interpersonal processes and primary groups focus on individual’s imme-
spans. Autistic people are less likely to receive SRH education in school diate social networks and supporters, including families, friends, work
compared to non-autistic peers or youth with other disabilities,25,26 groups, and healthcare providers. Interventions targeting institutional
rarely receive proactive sexual health services through Medicaid factors focus on institutions with organizational characteristics such
programs,27 are at greater risk of pregnancy complications,28 and are as rules and regulations, including healthcare institutions. Interven-
less likely to receive routine pelvic exams compared to non-autistic con- tions for community factors seek to change relationships between
trols or people with other disabilities.29,30 institutions (e.g., formal or informal networks) that occur between two
Systematic research on SRH and development of services for or more settings, at least one of which does not contain the individual.
autistic youth is limited by lack of population-level data. As a result, Finally, interventions aimed at changing public policy and society target
estimated rates of sexual activity vary widely from 8% to 70% and local, state, and national sociopolitical factors that affect individual
concurrent literature reviews present opposite conclusions about sex- outcomes.
ual behavior and sexual and reproductive health needs among autistic
people.6,14,31–33 Given diagnostic disparities and overrepresentation
of economically privileged families in research, reliance on clinical and The current study
convenience samples has likely biased the field toward the experi-
ences of cisgender men and families with healthcare access. Further- The aims of this study were to create a conceptual model for US-
more, there has been little input from autistic people on priorities for based stakeholders by: (1) developing a stakeholder- and literature-
research or services.21 To correct this, input is required on the service informed inventory of SRH service needs for autistic adolescents and
needs of autistic cisgender women (e.g., prenatal/antenatal care and young adults; and (2) identifying and prioritizing barriers and facilita-
intimate partner violence support) and communities with healthcare tors affecting their access to SRH services. To address these aims, we
disparities (e.g., racial/ethnic minorities and rural residents). Input from used Delphi methods, which are useful when research evidence is
autistic youth with same-sex attractions or who identify as asexual or sparse and ideas and insights from community members are
transgender is also needed to define their SRH service needs and bar- needed.48,49 Delphi methods have been used in a variety of research
riers.5,7,8,34,35 Tapping into diverse stakeholder knowledge and experi- areas to set research priorities and identify factors affecting an
ences will broaden the scope of the field to include all autistic youth, issue.50–52 A Delphi approach via phone or video chat and online sur-
increase the efficiency with which we investigate state-level service vey can elicit participants’ experience and knowledge from across
provision, and will facilitate the development and dissemination of diverse geographic areas and eliminates power dynamics commonly
accessible, sustainable services by highlighting community needs and found in face-to-face group processes by using structured, anony-
preferences.36 This project aimed to create a conceptual model based mous methods of communication and feedback.
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HOLMES ET AL. 51

METHODS Delphi Round 1

This study was approved by the authors’ institutional ethics review The purpose of Round 1 was to develop a comprehensive list of ser-
board. Participants provided informed consent for each component of vice needs and constructs that could affect access to SRH services
the study. We paid participants $50 for each Delphi round. and related outcomes for autistic youth. In preparation for construc-
tion of the Round 1 Delphi survey, we conducted a literature review
to inform an a priori list of constructs. Sources included journal publi-
Delphi approach cations, disability and youth advocacy group position statements, and
non-governmental organization reports or needs assessments. We
The Delphi approach typically uses several rounds of question- emailed participants the a priori list of constructs for review and fol-
naires, beginning with open-ended questions to elicit initial lowed up with a 60-min phone interview asking them to comment on
53
ideas. Our approach consisted of: (1) a literature review to create their experiences with the listed constructs and nominate additional
the list of service needs and barriers and facilitators to service constructs.49,57
access; (2) stakeholder interviews to elicit additional ideas (Round Participants commented on these categories:
1); and (3) two rounds of online surveys to establish the impor-
tance of constructs and modifiability of barriers and facilitators to 1. Service needs. This category included SRH services such as school
service access (Rounds 2 and 3). We employed a modified Delphi or community sexuality education; contraception and abortion ser-
approach in which we used a pre-generated list of items for rank- vices; sexually transmitted infection (STI) testing; social skills pro-
ing in Round 1.54,55 gramming; and assessment for and response to sexual abuse.
2. Service access barriers. This category included barriers that make
service access more difficult, such as unmet transportation needs,
Identification of study participants unmet privacy and support needs, service providers’ attitudes
about autism or sexuality, facility comfort and inaccessibility, rac-
To increase the quality of collective input gained through the Delphi ism, sexism/misogyny, homophobia, transphobia, cost, and patient
process, we recruited heterogeneous panels of 15–20 people repre- anxiety.
senting a diversity of perspectives, backgrounds, and geographic 3. Service access facilitators. This category included factors that facili-
regions.48,49,56,57 Using maximum variation sampling, we recruited an tated easier access to services, such as adequately trained providers,
autistic self-advocate panel (Panel 1, n = 19), a parent panel (Panel 2, care coordinators, engagement with special education system or
n = 18), and a service provider or researcher panel (Panel 3, n = 19). postsecondary education, outreach, autism- or disability-specific
Because some participants had overlapping roles, such as autistic health policies or programs, healthcare transition services, and
adults who also provided case management services, we engaged with models such as medical home programs or trauma-informed care.
a total of 47 participants. Participants in Panel 1 were eligible if they
had been identified as autistic by a professional, retained legal guard- For each category, participants suggested additional constructs
ianship, and could communicate in an interview either orally or via based on their experiences and answered open-ended questions
writing. To ensure diversity, we purposively selected people for the (e.g., “What kinds of things make it easier for you/people on the spec-
panel based on race/ethnicity, gender identity, and sexual orientation. trum to access these services?”). We recorded the interviews and
We selected parents in Panel 2 based on their young person’s age took detailed field notes annotated with key words. The first and third
(14 to 30 years), their young person’s race/ethnicity, verbal and intel- author reviewed the recordings and notes, and used checklists and
lectual ability, gender identity, and experiences with SRH and services. matrices to record participant perspectives.58 We borrowed tech-
We selected participants in Panel 3 based on their research or practi- niques from Rapid Identification of Themes from Audio Recordings
cal expertise working with autistic people. Participants included pedia- (RITA), a type of Rapid Evaluation and Assessment Method beneficial
tricians, adolescent medicine physicians, adult-focused physicians, for efficient identification of participant perspectives within a
psychologists, case managers, and research faculty. We prioritized research study.59,60
recruiting experts with different training backgrounds who had pro-
vided services to autistic cisgender women, people who are lesbian,
gay, bisexual, queer, intersex, asexual plus (LGBTQIA+), and people Delphi Round 2
from minoritized racial/ethnic backgrounds. We recruited panels
through the professional contacts of the research team, broader For Round 2, we integrated participant responses from Round 1 inter-
advertisements (distribution of flyers to mailing lists and networks), views to generate an online survey with four lists: (1) 19 SRH services;
and early participant referral. Of 47 individuals who completed inter- (2) other services that facilitate access to SRH services; (3) 21 service
views, 94% (n = 44) completed Survey 1 and 81% (n = 38) completed access barriers; and (4) 24 service access facilitators. We presented
Survey 2. items with a brief definition. For SRH services, participants used a
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52 SERVICE MODEL FOR AUTISTIC PEOPLE

T A B L E 1 Delphi survey ratings of importance of services to sexual and reproductive health and the importance of provider training on autism
(panel respondents = 44)

Importance of services to sexual Importance of provider

and reproductive health training on autism

% strongly % strongly
Service Mean (SD) Range agree Mean (SD) Range agree
Sexual abuse/victimization prevention services 4.91 (0.29) 4–5 91% 4.77 (0.57) 3–5 84%
Services for survivors of sexual abuse/victimization 4.86 (0.41) 3–5 89% 4.68 (0.71) 2–5 80%
STI testing and treatment 4.86 (0.41) 3–5 89% 4.57 (0.73) 3–5 70%
Contraception/family planning 4.75 (0.75) 1–5 86% 4.68 (0.64) 3–5 77%
Menstruation management 4.84 (0.37) 4–5 84% 4.66 (0.61) 3–5 73%
Prenatal care, labor/delivery, and postpartum care 4.82 (0.45) 3–5 84% 4.70 (0.59) 3–5 77%
Health screenings (e.g., pap smear and mammogram) 4.82 (0.39) 4–5 82% 4.66 (0.71) 2–5 77%
School-based sexuality education 4.73 (0.59) 3–5 80% 4.77 (0.52) 3–5 82%
School-based health centers 4.77 (0.57) 2–5 80% 4.79 (0.51) 3–5 82%
Services for socially inappropriate sexual behavior 4.77 (0.53) 3–5 80% 4.79 (0.47) 3–5 80%
LGBTQIA+ support groups 4.74 (0.58) 3–5 80% 4.56 (0.83) 1–5 68%
Gender affirming care for youth 4.65 (0.75) 2–5 77% 4.70 (0.60) 3–5 75%
Abortion services 4.65 (0.84) 1–5 77% 4.64 (0.66) 3–5 70%
Gender affirming care for adults 4.60 (0.91) 1–5 75% 4.69 (0.64) 3–5 75%
Community-based sexuality education 4.74 (0.44) 4–5 73% 4.74 (0.54) 3–5 77%
Relationship counseling 4.61 (0.65) 3–5 70% 4.52 (0.79) 3–5 70%
HPV vaccinations 4.65 (0.61) 3–5 70% 4.30 (0.83) 3–5 52%
Sex therapy 4.65 (0.57) 3–5 68% 4.56 (0.73) 3–5 68%
Occupational therapy for adults 4.63 (0.77) 1–5 68% 4.66 (0.79) 1–5 73%
Average Median 4.74 4.66
IQR, 25 4.65 4.61
IQR, 75 4.82 4.72

Note: Value ranging from 1 = strongly disagree to 5 = strongly agree. Bolded numbers denote items rates at or above the mean importance rating.
Abbreviations: HPV, human papillomavirus; IQR, interquartile range; LGBTQIA+, lesbian, gay, bisexual, transgender, queer and/or questioning, intersex,
and asexual plus; SD, standard deviation; STI, sexually transmitted infections.

5-point Likert-type scale (strongly disagree to strongly agree) to rate The Round 2 survey also included questions relating to the
their agreement with two statements: “This service is important to respondents’ background and demographic information. We asked
SRH for autistic people” and “Providers of this service should have the self-advocate and parent panels about the autistic person’s
training on autism.” Participants were also asked whether people with age, race/ethnicity, gender, and sexual orientation. Parents also
intellectual disability or limited verbal language (ID/LVL) needed each reported age at which their child was identified as autistic and
service (yes, no, and not sure). Due to an error, this question was not whether they had been professionally identified as having intellec-
asked for two items (Health Screenings, STI Testing and Treatment). tual disability. They also reported whether their child retained
Few stakeholders indicated that ID/LVL people did not need a service, guardianship. Professionals reported their job title and place of
so we combined “no” and “not sure” responses. For barriers and facili- work, discipline, and years spent working with autistic people. We
tators to service access, participants used the same Likert-style scale collected information about the demographic composition of the
to rate their agreement with two statements: “This barrier/facilitator population each professional worked with/advocated for including
makes it more difficult/easier for autistic people to use SRH services” age, race/ethnicity, socioeconomic background, and co-occurring
and “This would be possible to change with different policies or prac- intellectual disability.
tices.” We also asked participants to identify and rank the top five
barriers and facilitators that affect SRH service access for autistic peo-
ple. We calculated the mean scores, standard deviations, and range Delphi Round 3
for each statement (see Table 1). We tallied “not sure” responses but
did not include them in analyses. Panelists had the ability to comment The purpose of Round 3 was to organize constructs identified in
on their ratings if desired and to nominate new constructs that were Rounds 1 and 2 into a comprehensive framework related to SRH that
not included. would be useful in guiding future research and policy advocacy for
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HOLMES ET AL. 53

autistic people. We grouped items with high ratings from Round 2 into demographics. In sum, parents reported on 20 individuals aged 15 to
expanded thematic categories with conceptual labels and definitions. 30 years (Mean = 21.1 years, SD = 4.1) with varying levels of lan-
We developed an initial coding scheme based on social ecological guage and intellectual ability. Age at autism diagnosis ranged from
frameworks (e.g., individual-level, neighborhood, and macro). The first 18 months to 12 years (Mean = 3.83 years, SD = 2.6). Parents
and second authors independently coded each construct to assess the reported on youth who were 85% white Non-Hispanic, 15% Hispanic.
coding scheme. We resolved discrepancies through discussion and Parents reported that 65% of young people were cisgender men, 30%
adjusted the coding scheme accordingly. We then analyzed results were cisgender women, and one individual (5%) was transgender. Par-
and integrated the codes into themes. The first author grouped the ents reported that 65% were heterosexual, 5% were bisexual, and
items with high importance into expanded thematic categories, 30% of parents were unsure about their child’s sexual orientation.
assigning a conceptual label and a plain-language definition for each Parents reported a diagnosis of intellectual disability for 32%. Of the
theme. Qualitative comments were also grouped by theme and were 13 adult children for whom data were available, parents reported hav-
used to check the categorization of constructs. The first and second ing guardianship orders for six (46%).
authors then reviewed the groupings, conceptual labels, and defini- Panel 3 consisted of 19 autism professionals. On average, profes-
tions and made revisions for clarity. We coded the consensus items sionals had 14 years working with autistic people (SD = 9.26 years,
into analytical categories using the framework approach, beginning range = 1–31 years). If they provided direct services, most profes-
deductively with preset codes and then incorporating other themes sionals’ caseload included youth under 18 (83% of providers), cisgen-
that emerge from the data.61 der women or girls (88%), transgender/gender non-conforming clients
We presented the initial conceptual framework to participants (100%), sexual minority clients (100%), racial/ethnic minority clients
for feedback. Using Likert-type scales, participants rated whether (100%), and clients with co-occurring intellectual disabilities (87%).
the framework was: (1) Accurate (1, not at all accurate to 5, very
accurate; “That is, it includes barriers and facilitators you think are
important. It presents and categorizes services, barriers, and facilita- Sexual and reproductive health and other services
tors in an accurate way.”); (2) Useful for generating strategies to
improve SRH services or outcomes for autistic people (1, not at all Table 1 presents Delphi survey ratings of importance of services to
useful to 5, very useful; “That is, now that we have created this SRH and importance of provider training on autism and includes
framework together, people will have more information about how means scores and standard deviations. Mean scores of importance of
to improve sexual health and service access for autistic people.”); SRH services ranged from 4.60 (gender affirming care for adults,
(3) Applicable for diverse groups (1, not at all to 5, very much; “That SD = 0.91) to 4.91 (sexual abuse/victimization prevention services,
is, it is useful for autistic people with different intellectual, communi- SD = 0.29). The five SRH services with the highest mean ratings of
cation, and adaptive skills. It is useful for those who are Black, Indig- importance for autistic youth were sexual abuse/victimization preven-
enous, or other People of Color (BIPOC). It is useful for people who tion services, services for survivors of sexual abuse/victimization, STI
are LGBTQIA+.”) For each question, we gave participants the testing and treatment, menstruation management, and health screen-
opportunity to suggest ways to enhance the model’s accuracy, util- ings. There was consensus with 84% or more stakeholders reporting
ity, and applicability to diverse groups. We incorporated all sugges- strong agreement for the importance of each of these services. Sev-
tions into the final model. eral services had a wider range of importance ratings, indicating less
consensus about their importance: contraception/family planning,
abortion services, gender affirming care for adults, and occupational
RESULTS therapy for adults (range = 1–5).
In general, stakeholders agreed it was important for those provid-
Sample information ing SRH services to have training about autism. The proportion of par-
ticipants who strongly agreed that providers should have training on
Panel 1 consisted of 19 autistic adults, three of whom were autism pro- autism ranged from a low of 52% for HPV vaccinations to a high of
fessionals. Panel 1 was 67% white non-Hispanic, 17% multiracial, and 84% for sexual abuse/victimization prevention services. There was
6% each African American, Asian, and Eastern European/Slavic. Panel less consensus that providers of LGBTQIA+ support groups
1 included 39% men (including one transgender man), 17% cisgender (range = 1–5) or occupational therapy for adults (range = 1–5) need
women, and 44% transgender/gender non-conforming individuals. training on autism.
Finally, 33% were heterosexual, 22% were gay or lesbian, 28% were We also assessed for differences in reported service needs
queer, and 17% were bisexual or pansexual. Two communicated partly between autistic youth with and without co-occurring ID/LVL. There
or primarily using augmentative or alternative communication devices. was a consensus that ID/LVL youth needed access to the same list of
Panel 2 consisted of 18 parents of autistic youth or young adults, SRH services as other autistic people. Few participants responded
five of whom were also autism professionals and one of whom was “No” to these questions. One participant stated that the relationship
also autistic. Two parents reported on three autistic children each; counseling, sex therapy, and occupational therapy for adults were not
two providers focused on their professional opinions rather than dis- important to ID/LVL people and two participants stated that abortion
cussing their children, so those children are not described in these services were not important for ID/LVL people. Of note, over 10% of
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54 SERVICE MODEL FOR AUTISTIC PEOPLE

TABLE 2 Delphi survey ratings of barriers: importance and modifiability, by level of intervention (panel respondents = 44)

Percent in top 5
Importance rating Modifiability rating importance

% strongly % strongly
Barrier Mean (SD) Range agree Mean (SD) Range agree N (%)
Intrapersonal
Anxiety 4.77 (0.57) 2–5 81% 4.00 (1.18) 1–5 44% 11 (25.00)
The need for people to use verbal, spoken language to 4.77 (0.52) 3–5 82% 4.56 (0.67) 2–5 61% 11 (25.00)
navigate health system
Interpersonal
Lack of privacy 4.64 (0.58) 3–5 66% 4.54 (0.69) 2–5 52% 2 (4.55)
Parents as gatekeepers 4.58 (0.79) 1–5 68% 4.07 (1.06) 1–5 39% 14 (31.82)
Family resources (other than financial) 4.53 (0.70) 3–5 64% 4.19 (1.08) 1–5 41% 5 (11.36)
Transportation 4.48 (0.70) 3–5 59% 4.37 (0.76) 3–5 52% 8 (18.18)
Lack of service providers trained in autism 4.77 (0.48) 3–5 80% 4.59 (0.89) 1–5 70% 27 (61.36)
Provider comfort responding to disclosure of sexual 4.24 (0.99) 2–5 50% 4.44 (0.88) 1–5 55% 2 (4.55)
activity or abuse
Institutional
Lack of accurate info about autism and sexuality 4.77 (0.57) 3–5 84% 4.66 (0.82) 1–5 73% 20 (45.45)
Overworked and underpaid service providers 4.55 (0.71) 2–5 59% 4.42 (0.89) 1–5 53% 12 (27.27)
Waiting room conditions 4.40 (0.77) 2–5 50% 4.39 (0.80) 2–5 52% 3 (6.82)
Lack of culturally sensitive materials 4.23 (0.96) 1–5 45% 4.22 (1.06) 1–5 48% 2 (4.55)
Facility accessibility 4.20 (0.82) 2–5 39% 4.24 (0.85) 2–5 45% 3 (6.82)
Community
Service availability 4.84 (0.48) 3–5 86% 4.46 (0.84) 2–5 59% 22 (50.00)
Disconnection between providers and systems 4.60 (0.67) 3–5 64% 4.38 (0.75) 2–5 45% 7 (15.91)
Public policy and society
Cultural attitudes about sexuality 4.77 (0.61) 2–5◊ 82% 4.08 (1.06) 1–5 39% 16 (36.36)
Ableism 4.74 (0.54) 3–5 75% 4.32 (1.04) 1–5 55% 16 (36.36)
State or federal policies for funding services 4.65 (0.69) 2–5 73% 4.68 (0.53) 3–5 61% 3 (6.82)
Focus on treatment rather than prevention 4.53 (0.67) 3–5 61% 4.47 (0.85) 2–5 64% 15 (34.09)
Insurance policies 4.52 (0.77) 2–5 64% 4.39 (0.89) 2–5 57% 8 (18.18)
Cost of services 4.49 (0.83) 2–5 64% 4.51 (0.71) 3–5 59% 8 (18.18)
Average Median 4.58 4.38
IQR, 25 4.49 2.00
IQR, 75 4.77 3.00

Note: Value ranging from 1 = strongly disagree to 5 = strongly agree. Bolded numbers denote items rated at or above the mean importance rating.
Abbreviations: IQR, interquartile range; SD, standard deviation.

respondents said they were not sure about the importance of the fol- SD = 0.82) to 4.84 (service availability, SD = 0.48; see Table 2). The
lowing services for ID/LVL people: relationship counseling (n = 5, five service access barriers rated most important on average were ser-
11%), sex therapy (n = 7, 16%), HPV vaccination (N = 7, 16%), and vice availability, lack of service providers trained in autism, lack of
occupational therapy for adults (n = 6, 14%). accurate information about autism and sexuality, verbal and communi-
cation difficulties, and cultural attitudes about sexuality.
Mean scores for the modifiability of service access barriers ran-
Access barriers and facilitators ged from 4.00 (anxiety, SD = 1.18) to 4.68 (state or federal policies
for funding services, SD = 0.53). The five service access barriers rated
Barriers most modifiable on average were state/federal policies for funding
services, the lack of accurate information about autism and sexuality,
Mean scores for the importance/impact of service access barriers lack of service providers trained in autism, verbal and communication
among autistic youth ranged from 4.20 (facility accessibility, difficulties, and lack of privacy.
 19312393, 2023, 1, Downloaded from https://onlinelibrary.wiley.com/doi/10.1363/psrh.12221 by MINCYT Office, Wiley Online Library on [02/08/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
HOLMES ET AL. 55

TABLE 3 Delphi survey ratings of facilitators: importance and modifiability, by level of intervention (panel respondents = 44)

Percent in top 5
Importance rating Modifiability rating importance

% strongly % strongly
Facilitator Mean (SD) Range agree Mean (SD) Range agree N (%)
Intrapersonal
Sexually active 3.52 (1.09) 2–5 14% 4.37 (0.76) 3–5 19% 8 (18.18)
Interpersonal
Peer support and outreach 4.60 (0.59) 3–5 63% 4.68 (0.53) 3–5 58% 3 (6.82)
Family caregiver support 4.57 (0.80) 1–5 67% 4.38 (0.75) 2–5 42% 7 (15.91)
Training in SRH for autism providers 4.64 (0.76) 1–5 74% 4.00 (1.18) 1–5 69% 11 (25.00)
Training on autism for SRH providers 4.52 (1.02) 1–5 74% 4.42 (0.89) 1–5 76% 12 (27.27)
Autistic consultation to improve service 4.45 (0.87) 1–5 62% –
deliverya
Institutional
Service accommodations 4.79 (0.47) 3–5 81% 4.66 (0.82) 1–5 56% 20 (45.45)
Clear and detailed expectations 4.76 (0.48) 3–5 77% 4.56 (0.67) 2–5 65% 11 (25.00)
Long enough appointments 4.75 (0.44) 4–5 70% 4.08 (1.06) 1–5 42% 16 (36.36)
Online appointments with professionals 4.62 (0.70) 2–5 70% 4.32 (1.04) 1–5 51% 16 (36.36)
Paperwork before arrival 4.58 (0.68) 2–5 60% 4.54 (0.69) 2–5 70% 2 (4.55)
Online appointment scheduling 4.56 (0.78) 2–5 65% 4.07 (1.06) 1–5 60% 14 (31.82)
Community
Person-centered care 4.86 (0.35) 4–5 36% 4.46 (0.84) 2–5 63% 22 (50.00)
Trauma-informed care 4.80 (0.46) 3–5 84% 4.59 (0.89) 1–5 63% 27 (61.36)
Ongoing therapy or counseling 4.69 (0.56) 3–5 74%
Local guides to resources 4.51 (0.80) 2–5 67% 4.19 (1.08) 1–5 56% 5 (11.36)
Access to autism diagnostic servicesa 4.49 (0.76) 2–5 57% –
Access to care coordination or case 4.49 (0.64) 3–5 55% –
management servicesa
Social or support groupsa 4.45 (0.68) 1–5 52% –
Integrated care or patient-centered 4.39 (0.79) 3–5 52% –
medical
home modela
Existing relationships between service 4.35 (0.86) 2–5 47% 4.39 (0.89) 2–5 35% 8 (18.18)
systems or organizations
Residential supports that integrate best 3.58 (1.50) 1–5 36% –
SRH practicesa
Public policy and society
Life course perspective 4.41 (0.92) 2–5 51% 4.47 (0.85) 2–5 44% 15 (34.09)
Mandates for SRH services 4.24 (1.22) 1–5 56% 4.51 (0.71) 3–5 56% 8 (18.18)
Average median 4.58 4.46
IQR, 25 4.51 4.35
IQR, 75 4.75 4.61

Note: Value ranging from 1 = strongly disagree to 5 = strongly agree. Bolded numbers denote items rates at or above the mean importance rating.
Abbreviations: IQR, interquartile range; SD, standard deviation; SRH, sexual and reproductive health.
a
These items were in a separate service section and modifiability data was not gathered for this section.

As noted in Table 2, several barrier ratings were at or above the and systems, and cultural attitudes about sexuality. In contrast, bar-
mean rating for both importance and modifiability (e.g., lack of privacy riers rated as at or above the mean for modifiability but below the
for individuals and lack of trained providers). Notably, several barrier mean for importance included overworked or underpaid service pro-
ratings were at or above the mean for importance but below the mean viders, most services providing treatment rather than prevention of
for modifiability, including anxiety, disconnection between providers negative outcomes, and health insurance policies.
 19312393, 2023, 1, Downloaded from https://onlinelibrary.wiley.com/doi/10.1363/psrh.12221 by MINCYT Office, Wiley Online Library on [02/08/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
56 SERVICE MODEL FOR AUTISTIC PEOPLE

Facilitators (39%). They provided 18 comments suggesting improvements to the

model’s applicability to diverse people and families. We used all of
Mean scores for the importance/impact of service access facilitators these critiques and comments to shape the model.
for autistic youth ranged from 3.52 (sexually active, SD = 1.09) to
4.86 (person centered care, SD = 0.35; see Table 3). The five service
access facilitators rated most important on average were person cen- DI SCU SSION
tered care, trauma informed care, service accommodations, clear and
detailed expectations, and long enough appointments. The current study examined perspectives of engagement with SRH
Mean scores for the modifiability of service access facilitators services among autistic young people by listening directly to stake-
ranged from 4.00 (sexual/reproductive health training, SD = 1.18) to holders. A conceptual model of SRH service access based on the
4.68 (peer support and outreach, SD = 0.53). The five service access social ecological framework with five levels of influence emerged from
barriers rated most modifiable on average were peer support and out- the data. This model complements previous academic-community
reach, service accommodations, providing trauma-informed care, pro- partnership work on patient, provider, and context-level factors that
viding clear and detailed expectations for service experiences, and the affect healthcare for autistic people62 and other patient-centered
ability to complete paperwork before arrival. As noted in Table 3, a models of healthcare access.63 The model describes potential mecha-
number of facilitators were ranked at or above the mean rating for nisms for improved accessibility that will be useful for program devel-
both importance and modifiability (e.g., detailed explanations of opment, research, and policy-making.
healthcare appointments and procedures). In contrast, providing long- There was a clear stakeholder consensus that a broad range of
enough appointments and online appointments with professionals SRH services are important to health and well-being for autistic youth
were ranked at or above the mean for importance, but below the and young adults, including autistic people with intellectual disability
mean for modifiability. Factors considered to be at or above the mean or limited verbal language. The importance of SRH needs are assumed
for modifiability but below the mean for importance were taking a life for the general population, yet research has documented that autistic
course perspective to service provision and mandating the provision people lack access to many of these services.26,28–30 The strongest
of SRH services. consensus about service importance was for sexual abuse/
Stakeholders also described other services that facilitated access victimization prevention and treatment services for autistic youth,
to SRH services (see Table 3; data on modifiability for these items which aligns with the high rates of victimization reported for this pop-
were not collected). For example, stakeholders described how access ulation.25,64,65 Additionally, socially inappropriate sexual behavior
to regular therapy or a support group, a care coordinator or case man- (e.g., masturbation in public and nonconsensual touching) can have
ager, or a model of care such as the medical home model would make serious social and legal consequences and stakeholders in this study
it easier for autistic people to access SRH services. However, none of agreed that autistic youth should have access to services addressing
these service models were rated as at or above the mean for such behaviors.66,67 Finally, given the high degree of overlap in the
importance. LGBTQIA+ and autistic populations,68–70 it is also notable that gender
affirming care for youth and adults and LGBTQIA+ support groups
garnered fairly strong consensus for importance.
Conceptual model The model suggests that accessibility can be heightened by miti-
gating barriers or enhancing facilitators at multiple ecological levels
Based on our findings, we created a comprehensive framework of key (e.g., individual, community, and society). Some of the barriers and
constructs to guide future research and policy advocacy. We based facilitators that emerged from stakeholder interviews overlap with
our conceptual model on the social ecological health model, with research on broader healthcare access for autistic people.71 For exam-
interconnected circles beginning at the intrapersonal level and moving ple, there was stakeholder consensus that service providers in SRH
outward through different levels of the system of factors affecting a should be competent to work with autistic people and that providing
person’s access to services (Figure 1). training toward this purpose was important and feasible. Implementa-
Overall, stakeholders responded favorably to the proposed con- tion of new training can be complicated and must be addressed at
ceptual model. They reported that the framework was mostly (41%) interpersonal, institutional, community, and public policy levels. How-
or very accurate (54%). They provided 15 comments suggesting ever, stakeholders expressed hope that autism training would help
improvements to the model’s accuracy or format. In terms of utility, providers address numerous interconnected barriers at the individual
stakeholders rated the framework as somewhat (10%), mostly (28%) level (e.g., anxiety, verbal and communication differences, and accom-
or very useful (62%) for generating strategies to improve SRH services modations) and interpersonal level (e.g., helping parents understand
or outcomes for autistic people. They provided 12 comments suggest- the importance of SRH services for youth). In qualitative feedback on
ing improvements to the model’s utility. When asked to rate the the model, stakeholders noted that such trainings should take a
framework’s applicability to autistic people with varying demographic, strengths-based, neurodiversity approach. Additionally, it is recom-
disability, and sociodemographic backgrounds, stakeholders rated the mended that basic information about SRH be included in autism train-
framework as somewhat (23%), mostly (36%), or very applicable ing initiatives (e.g., the Autism CARES Act-funded Leadership
 19312393, 2023, 1, Downloaded from https://onlinelibrary.wiley.com/doi/10.1363/psrh.12221 by MINCYT Office, Wiley Online Library on [02/08/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
HOLMES ET AL. 57

FIGURE 1 Conceptual model of sexual and reproductive health for autistic adults

Education in Neurodevelopmental Disabilities Training Program, The model also highlighted facilitators that improve service
Developmental Behavioral Pediatrics Training Program, and the accessibility for autistic young people. Service accommodations and
Autism CARES Act National Interdisciplinary Training Resources trauma-informed care were both among the most impactful and fea-
Center). sible facilitators according to stakeholders. The accommodations
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58 SERVICE MODEL FOR AUTISTIC PEOPLE

discussed by autistic stakeholders in this study align with healthcare as sexual abuse/victimization prevention, treatment services, and sup-
accommodation needs identified by other groups with disabilities: ports for socially inappropriate sexual behavior. The need for provider
environmental accommodations (e.g., being allowed to wait for the training in autism was also very apparent, yet there is little research
appointment in a private room away from the waiting area), adminis- on the length or content needed for trainings to improve service
trative accommodations (e.g., written notes provided after the access and outcomes in this area. Empirical evidence that links inter-
appointment, allowing a supporter to attend appointments), commu- ventions to improved outcomes is needed.
nication accommodations (e.g., willingness to converse with people
who use augmentative or alternative communication devices,
explaining ideas in a way that the individual can understand) and LIM I TAT I ON S
having disability and accommodation needs recorded in the medical
record, indicating that changes in these areas would benefit many The project emphasized in-depth data collection from a stakeholder
72
more patients beyond autistic people. There are currently tools to panel and thus findings do not generalize to all autistic people, their care-
help both patients and providers talk about accommodations in givers, or service providers. We emphasized gender identity and sexual
healthcare, including the AASPIRE Healthcare Toolkit and the Autis- orientation diversity in our recruitment of stakeholders and the stake-
tic Self-Advocacy Network’s Real Talk Provider Toolkit to improve holders could have been more diverse in terms of race/ethnicity and
73,74
the quality of sexual health care for patients with disabilities. intellectual ability. Research with families of autistic youth from Black,
These accommodations are not costly, and even healthcare facilities Korean, and Hispanic backgrounds suggests there are some structural
with limited financial resources can take immediate steps to and family factors that affect access across cultures and some that are
“improve the culture of disability among their providers and staff, specific to each culture.79 Thus, research focused specifically on the
and adjust their visit workflows to better accommodate patients experiences of autistic people who are BIPOC may provide more space
with disabilities” (2375).72 for investigating cross-cultural differences in service access barriers and
Trauma-informed care was a second facilitator rated by stake- facilitators. Additionally, we recruited formally diagnosed autistic people
holders as both important and modifiable. Autistic people experience but many women and BIPOC do not have access to formal diagnosis,
a disproportionate burden of traumatic experiences, including sexual and self-diagnosed autistic people may have different barriers or facilita-
abuse and assault.25,64,65,75 Trauma-informed care means that pro- tors than those who were formally identified. Outreach to people who
viders know that many people have experienced trauma are less represented in research, trainings to increase research literacy,
(i.e., distressing events that overwhelm one’s ability to cope), are sen- and initiatives that connect researchers to diverse autistic stakeholders
sitive to the signs of trauma, are responsive to the needs of youth are valuable steps toward more inclusive research.
who have experienced trauma, work to develop a trusting relationship
with youth, and actively work to avoid retraumatizing survivors by, for
example, providing a greater degree of control over what happens to CONC LU SION
youth in the setting in which they are situated. The Substance Abuse
and Mental Health Services Administration (SAMHSA) has developed The current study adds to the literature for autistic adults by putting
a framework for trauma-informed services that can be deployed in forth a model of SRH service utilization, and provides an avenue for
diverse settings.76 SAMHSA principles might be implemented in a autistic stakeholders, families, and service providers to speak about
healthcare setting by having providers give information (e.g., why sen- access to these important services. The model suggests that there are
sitive questions are asked, why a physical exam is needed), allowing many feasible ways to support equitable access to services for autistic
trusted friends or family members to be present, explaining that the people. Providers can offer information about their facilities and prac-
service can stop at any time if the client wants, and working with cli- tices online to reduce anxiety, ensure that policy allows for support
ents who refuse treatments rather than trying to force them or acting persons to attend appointments (including during the COVID-19 pan-
annoyed. SAMHSA principles are also being implemented in other demic), and create resources about autism and SRH for individuals,
SRH service settings, such as school-based sexuality education.77 Ser- caregivers, and spouses. On the institutional level, provider expertise
vices to address trauma were also considered important by stake- in autism or SRH and the physical and sensory environment of the
holders in this study, so it is worth noting that such services can clinic may influence service utilization. Community factors such as
emphasize the development of positive and healthy sexuality rather access to trauma-informed care or awareness of knowledgeable pro-
than overemphasizing sexual risks (e.g., revictimization).78 viders in a person’s area may also facilitate access. Finally, public pol-
Findings from this study support our model’s proposition that icy and societal attitudes like ableism influence many of these other
SRH and service access for autistic people are a function of multilevel factors (e.g., difficulty finding reasonable accommodations) and must
factors and addressing health equity issues requires a multilevel and be addressed. Finding effective ways to study what keeps autistic
multisector response. Our model can guide future research by provid- adults engaged with SRH services can inform interventions to raise
ing a holistic view of determinants of service access and outcomes the low rates of preventative service use and provide autistic people
and suggesting factors to be included in studies. This paper highlights with the knowledge and tools for sexual and reproductive health and
specific aspects of autistic SRH in need of further investigation, such self-determination.
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HOLMES ET AL. 59

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HOLMES ET AL. 61

AUTHOR BIOGRAPHI ES
research interests include improving community systems and ser-
vices, understanding the long-range impact of social determinants
Laura Graham Holmes is an Assistant Professor at the CUNY
of health and examining the intersection of climate change and
Hunter College Silberman School of Social Work. She earned a
public health. Dr. Shattuck is currently focused on approaches for
Ph.D. in clinical psychology from the University of Utah and com-
measuring and improving the performance and equity of systems
pleted her capstone clinical training at the Children’s Hospital of
of care for vulnerable populations using collaborative community
Philadelphia (CHOP) as a fellow in the Leadership Education in
engagement. He is also collaborating with foundations on a range
Neurodevelopmental Disabilities (LEND) program and the Center
of health and disability topics. An abiding passion of his is helping
for Autism Research. Dr. Holmes completed postdoctoral fellow-
translate scientific findings into useful guidance for policy and
ships at the A. J. Drexel Autism Institute and the Boston Univer-
practice in the areas of health and social services. He is also a
sity School of Public Health. Her agenda is to co-design, with the
member of Mathematica’s Equity Community of Practice. Before
autistic community, new social-behavioral interventions that
joining Mathematica in 2020, Dr. Shattuck was a professor at
enhance quality of life for autistic adolescents and adults.
Drexel University, where he was the founding leader of the
Dr. Graham Holmes is a member of the Autism Intervention
A.J. Drexel Autism Institute’s Life Course Outcomes Program, the
Research Network – Physical Health (AIR-P) in the Gender, Sexu-
National Autism Data Center, and the Transition Pathways Com-
ality, and Reproductive Health node. Dr. Graham Holmes has a
munity Partnership Initiative. He oversaw an integrated strategy
decade of experience providing evidence-based clinical assess-
for conducting, translating, and disseminating research to improve
ment, intervention, and consultation to people with disabilities.
community-based services and inform national policies aimed at
Kristy Anderson, Dr. Anderson is an Assistant Professor at the helping teens and adults on the autism spectrum. He also trained
Florida State University School of Social Work. She earned her in methods of public health surveillance and epidemiology as a
PhD in Social Welfare at the University of Wisconsin, Madison. postdoctoral fellow funded by the National Institutes of Health at
Dr. Anderson has been involved in research spanning different the University of Wisconsin-Madison and was a professor at
methodologies including implementation science studies, qualita- Washington University in St. Louis. Before his academic career,
tive research, and studies that rely on large population-based Dr. Shattuck worked in social services doing tenant organizing,
datasets. Her research focuses broadly on economic well-being, developing affordable housing, and designing programs for vulner-
life course transitions, and evidence-based practices. able populations—including homeless youth and families, migrant
Dr. Anderson’s work is informed by over seven years of experi- farmworkers, preschool children, and incarcerated men.
ence serving individuals with developmental disabilities in residen- He has a Ph.D. in social welfare from the University of Wisconsin-
tial and vocational settings. Madison.

Greg Sieber is a researcher, designer, and sound artist based in

Philadelphia. He is pursuing Master’s degrees in Design Research
and Science, Technology, and Society at Drexel University and
How to cite this article: Holmes LG, Anderson K, Sieber GS,
worked on this project as a research coordinator and analyst at
Shattuck PT. Sexual and reproductive health services for
the A. J. Drexel Autism Institute.
autistic young people in the United States: A conceptual
Paul Shattuck is a nationally recognized expert in autism spectrum model of utilization. Perspect Sex Reprod Health. 2023;55(1):
disorders, and he pioneered the understanding of autism in adult- 49‐61. doi:10.1363/psrh.12221
hood and the measurement of autism outcomes. His other