“I’m dealing with a health care system that doesn’t get it”: Barriers and facilitators to inclusive healthcare for autistic adults

Abstract

Emerging research points to high rates of major psychiatric disorders and chronic medical conditions among autistic adults. However, the unique healthcare needs of autistic adults are often overlooked, perhaps due to limitations in population-level surveillance and widespread public misconceptions about autism in adulthood. Understanding the mechanisms underlying this prevalence of poor health outcomes in autistic adults requires an exploration into the lived experiences of autistic adults across their lifespans. This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. We conducted semi-structured interviews with 23 autistic adults in the United States, ranging in age from 18 to 56 years, seven of whom identified as nonbinary or gender non-conforming. We asked autistic adults about how they manage their health and interact with healthcare systems. Through thematic analysis of the data, barriers to receipt of quality care for autistic adults were identified. Results were then conceptualized through the Systems Engineering Initiative for Patient Safety model of work system and patient safety. Through this model, this study describes the interactions between autistic adults and their healthcare systems, pointing to specific areas for improvement and intervention. Overall, findings advocate for a system-level approach to improving health outcomes of autistic adults.

Lay abstract

Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

Keywords

adults autism spectrum disorders health services qualitative research

The unique healthcare needs of autistic adults are often overlooked in research, practice, and policy. A growing body of research points to high rates of most major psychiatric disorders and chronic medical conditions among autistic adults, including depression, anxiety, psychoses, obsessive-compulsive disorder (OCD), bipolar disorder, and attention deficit disorder as well as hyperlipidemia, epilepsy, sleep disorders, obesity, diabetes, cardiovascular disease, and hypertension (Bishop et al., 2021; Bishop-Fitzpatrick & Rubenstein, 2019; Broder-Fingert et al., 2014; Buck et al., 2014; Croen et al., 2015; McLean et al., 2021; Tyler et al., 2011). Most recently, research has found that autistic adults may have a higher risk of cardiometabolic diseases, central sensitivity syndromes, Parkinson’s disease, gastrointestinal issues, and most other non-communicable diseases (Dhanasekara et al., 2023; Grant et al., 2022; Hand et al., 2020; Ward et al., 2023). Determining the mechanisms underlying the high prevalence of poor health outcomes in autistic adults requires better understanding of the lived experiences of autistic adults across the adult lifespan.

Over the past few years, several research teams have employed various qualitative approaches to investigate ways to improve healthcare for autistic adults. Many of these approaches involve highlighting the views of clinicians working with this community. In 2023, Morris and colleagues conducted a qualitative review of the research on healthcare providers’ experiences with autistic individuals. The 15 studies identified by this review emphasized and reinforced autism as a particularly complex diagnostic profile that requires higher demands for healthcare providers to effectively support autistic people in healthcare contexts (Morris et al., 2023). Overall, a limited number of providers of adult care feel they have adequate knowledge or skills to provide care to autistic adults (Morris et al., 2023; Zerbo et al., 2015). Building on this, Mason and colleagues (2021) conducted one-on-one interviews with healthcare professionals and held discussion groups with autistic people. Key findings included the importance of seeing the same professional and making inclusive adjustments to healthcare settings, autistic individuals’ need for extra support in appointments, and clinicians often feeling constrained by time pressures and targets (Mason et al., 2021). Similarly, Benevides and colleagues (2020) held several focus groups with autistic adults to discuss health and well-being and receive input about top areas for future research. The three large priority areas identified were mental health, access to healthcare, and gender and sexual health (Benevides et al., 2020).

Beyond focus groups, few teams, especially in the United States, have conducted one-one-one detailed interviews with autistic adults regarding their health and healthcare experiences. Dern & Sappok conducted a qualitative study in Berlin, Germany and identified several barriers to healthcare for autistic people, including difficulties making phone calls and lack of time to think and respond to written notes (Dern & Sappok, 2016). Crane and colleagues (2019) conducted detailed interviews with 21 young autistic adults in England about their mental health needs. Their results highlighted how young autistic adults often experience difficulty in evaluating their mental health and face high levels of stigma and obstacles to accessing support (Crane et al., 2019). Within the United States, Nicolaidis and colleagues (2015) conducted semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Their research participants reported that the success of healthcare interactions largely depended on the interplay between person-level (verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical nonverbal communication, and challenges with organization), provider-level (providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters), and systems-level factors (availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism; Nicolaidis et al., 2015). Nicolaidis and colleagues (2015) were among the first to use qualitative findings gathered from interviews with autistic adults to illuminate possible multilevel mechanisms underlying their unique healthcare interactions.

The present study builds upon this growing body of literature by examining the barriers and facilitators to healthcare access and quality within the U.S. healthcare work system. More specifically, we expand upon this literature by leveraging an established theoretical model—the Systems Engineering Initiative for Patient Safety (SEIPS) model—to better understand how healthcare systems, as well as person and provider-level factors, impact healthcare access and quality among autistic adults. Better understanding barriers and facilitators to healthcare access and quality among autistic adults at the person, provider, and systems level has the potential to inform interventions across multiple levels that may improve healthcare systems for autistic people, with the eventual goal of eliminating health disparities.

SEIPS model of work system and patient safety

The SEIPS model is a theoretical model rooted in human-centered systems engineering. Developed by Carayon and colleagues (2006), it illustrates how work systems affect health-related outcomes and in doing so, guide future research and healthcare improvement efforts (Holden & Carayon, 2021). The SEIPS model demonstrates how work system structures (person, tasks, technology and tools, environment, and organization) interact with one another to inform processes and outcomes (Carayon et al., 2006; Krupp et al., 2018). The structure of the work system, or healthcare organization, for example, will affect clinical processes, which in turn will influence patient, employee, and organizational outcomes (Carayon et al., 2006, 2014; Holden et al., 2013). This model can be useful in providing a framework for identifying relevant factors within the healthcare work system that can be adapted to improve processes and outcomes, such as those experienced by autistic adults (Krupp et al., 2018).

The SEIPS model has been leveraged to improve healthcare outcomes within the broader health services research field. It has guided assessment of systems, processes, and outcomes in various healthcare settings such as outpatient surgery centers, cardiac operating rooms, and critical care nursing centers (Carayon et al., 2005; Danesh et al., 2020; Lumley et al., 2020; Strauven et al., 2020). One example focused on redesigning an essential component of the healthcare system, primary care, to improve provider efficiency and quality of care through health information technology (IT) (Wooldridge et al., 2017). The research team combined primary care clinic observations and semi-structured interviews based on the SEIPS model and centered on its work system elements (Wooldridge et al., 2017). Barriers and facilitators across each work system element were identified. Facilitators were linked to the person element of the work system including familiarity between staff and open communication between nurses and physicians (Wooldridge et al., 2017). Several barriers were associated with the technologies and tools element due to a lack of fit between tools and tasks, or technologies creating additional work for nurses (Wooldridge et al., 2017). Through an application of the SEIPS model, the researchers exposed several relatively low-cost process facilitators that could be leveraged more widely in their primary care clinics including the usefulness of dual monitors for nursing staff (Wooldridge et al., 2017). It also called for a larger reevaluation of their health IT to ensure all tools are efficiently streamlined and completing tasks as intended.

Beyond application, the SEIPS model can guide the development and implementation of site-tailored, comprehensive interventions (Gilson et al., 2021; Zisberg et al., 2018). Zisberg and colleagues (2018) developed a SEIPS-based intervention for promoting in-hospital mobility for older adults at two medicine units at an academic medical center. Across six consecutive phases, the research team conducted in-depth interviews with hospital leadership, addressed each SEIPS model at their site, identified facilitators and barriers related to patient mobility, and developed an intervention and implementation plan that ultimately led to improved knowledge, attitudes, and behavior of staff and significantly improved patient outcomes (Zisberg et al., 2018). Similarly, Gilson and colleagues (2021) developed a novel physical layout for pharmacies, called the Senior Section™, to support more efficient and effective communication between pharmacists and older adults and to ultimately improve pharmacists’ ability to promote patient safety around over-the-counter medication use in the United States. The Senior Section was conceptualized using the SEIPS model, helping them determine which healthcare system features were facilitating or hindering their work (Gilson et al., 2021). By addressing the internal environment, as well as supporting the work required by staff and patients to safely select over-the-counter medications, the Senior Section took an unprecedented approach to achieving better outcomes in older adults (Gilson et al., 2021).

These examples demonstrate the ways in which the SEIPS model can be used to sustainably and comprehensively improve care. Through this model, we can identify factors that affect health outcomes and thus point to multiple areas for system redesign. To our knowledge, no study to date has applied the SEIPS model to evaluating the relationships between SEIPS elements and health outcomes among autistic adults and to developing possible interventions for improving future care.

Purpose

Our overall goal was to better understand autistic adults’ experiences with managing their health and healthcare in order to explore areas the healthcare system may be promoting or impeding their health outcomes. More specifically, we conducted a series of individual qualitative interviews with autistic adults aged 18 and older, focusing on how and why autistic adults make decisions about interfacing with the healthcare system, and what their experiences are like with providers and in healthcare settings. We aimed to identify and describe specific work system factors that influence whether autistic adults receive the care they need.

Method

Sampling

Data for this study come in part from a larger qualitative study on the health and healthcare experiences of middle-aged and older autistic adults (35+) and their emergency contacts. This larger study aimed to understand how middle-aged and older autistic adults and their emergency contacts experience health and make decisions about how and if to interface with the healthcare system. Responses from autistic adults were used from this study and supplemented with responses from additional interviews with those 18–35 years old to capture experiences of those across adulthood. Therefore, autistic adults were eligible to participate in this study if they: (1) were age 18+; (2) had an administrative, professional, or suspected diagnosis of autism spectrum disorder (ASD); and (3) were able to communicate in English. We did not exclude autistic adults with co-occurring intellectual disability. All participants resided in the United States. We sought to obtain rich and diverse qualitative data. Thus, we continued to recruit until additional interviews no longer resulted in identification of new concepts.

We began recruitment through purposive sampling in local community centers (gaming stores, pharmacies, libraries, restaurants, Young Men’s Christian Associations [YMCAs]) and through disability service providers. We met routinely with autistic adult advocacy groups and posted study information on Facebook groups, Reddit forums, and on Twitter through channels accessed by autistic adults. Subsequently, we used respondent-driven sampling by inviting and accepting referrals from previous participants. To engage a more representative sample, we conducted a second round of recruitment targeting adults who identified as Black, Indigenous, and people of color (BIPOC) and/or who are transgender or nonbinary.

Once an individual expressed interest in participating, we screened them for eligibility over the phone. To increase accessibility, we conducted qualitative interviews via video conferencing software, and a waiver of written consent was approved by the Institutional Review Board (IRB). The interviewer used teach-back techniques to ensure the autistic participants understood the study and had the capacity to consent (Horner-Johnson & Bailey, 2013). The consent and interview process were completed by experienced interviewers who had undergone training on the use of ethical recruitment and consent procedures with autistic people. Interviewers were master’s-level social workers who had significant personal and professional experience with autistic adults. To ensure that the voices of participants were accurately heard and communicated, the interviewer summarized back interviewee answers for confirmation.

Interviews followed a semi-structured guide that included questions and probes about (1) health habits; (2) health problems; (3) health services; and (4) autism and aging impact. Interviews were approximately 1 h in length. Demographic information was collected through a Qualtrics Software survey. Adults received a US$25 gift card for participation. Interviews were recorded and transcribed verbatim, removing any identifiable information. All study procedures and materials were approved by the University of Wisconsin–Madison IRB.

Community involvement

The research team identified and employed several strategies for incorporating autistic adults in this qualitative research. These included providing reasonable accommodations to obtain consent, diversifying recruitment strategies, and taking steps over several years to foster trust with the community (Banas et al., 2019; Maye et al., 2022). All study materials were developed in collaboration with autistic adults and disability service providers and were edited iteratively in response to ongoing feedback from autistic research participants. All questions were conceived through conversation with our autism partnerships about their priorities; however, several autistic adults noted difficulty with the open-ended questions we proposed; thus, we integrated more specific probes for broader questions related to what being healthy means to them. Similarly, after piloting the consent form, we received feedback that not all sections were written in plain language, and we edited accordingly. Engaging autistic adults in every step of the research process helped to test the validity and acceptability of research methodology, ensure questions were framed inclusively, and interpret perspectives accurately.

Participants

A description of the 23 autistic adults in our sample is presented in Table 1. Autistic adults ranged in age from 18 to 56 years. Among our sample of adults, eight identified as male, eight as female, and seven as nonbinary or gender non-conforming. Adults were asked to check all races and/or ethnicities that applied. Although 21 adults identified as White, 16 identified as White-only. Similarly, autistic adults were asked to select all individuals who help them with their health and healthcare. Notably, eight autistic adults selected they had no one helping them and nine included their parent. Most of our sample had part-time and/or full-employment, lived independently, and had attained some college education or higher. Two of our participants identified as uninsured compared with nine with an employer-based plan.

Table 1.

Characteristics of autistic adults n = 23.

	M (SD) or N
Age in years	37.61 (9.8)
Gender
Male	8
Female	8
Nonbinary or gender non-conforming	7
Race/ethnicity
American Indian or Alaska Native	2
Asian	1
Black or African American	2
Hispanic, Latino, or Spanish	1
White	21
Ashkenazi	1
Educational attainment
Master’s degree or higher	7
Bachelor’s degree	6
Some college or associate’s/Trade degree	7
High school diploma/GED	2
Less than a high school diploma	1
Current housing situation
Home or apartment alone	11
Home or apartment with roommates	4
Home or apartment with family members	8
Family income
Low income	4
Lower-middle income	4
Middle income	10
Upper-middle income	1
High income	1
Prefer not to answer	3
Help with health or healthcare
No one	8
Spouse	5
Sibling	1
Parent	9
Friend	1
Paid professional (case manager)	5
Health insurance
Employer-based plan	9
Medicaid	2
Medicare	1
Both Medicaid and Medicare	4
Marketplace	1
Private	1
Plan through family member	3
Uninsured	2
Employment status
Unemployed/looking for work	2
Part time employment	8
Full time employment	10
Student	1
Volunteer	1
Unable to work	1

Analytic approach

We employed thematic analysis to our data, which is a flexible analytic framework independent of theory and epistemology (Braun & Clarke, 2006). Thematic analysis aligns with a constructivist research paradigm and allowed us to provide a rich, detailed, and complex account of our data. Thematic analysis is advantageous in summarizing key features of large bodies of qualitative data, highlighting similarities and differences across the dataset (Braun & Clarke, 2006). This approach is clearly developed, involving six recursive phases: familiarizing yourself with the data; generating initial codes; searching for themes; reviewing themes; defining and naming themes; and ultimately, producing the report (Braun & Clarke, 2006).

We analyzed transcripts consecutively, and emerging themes were tested against the data with attention paid to variations. We used a hybrid approach of deductive and inductive coding, applying theory to data while also constructing new meaning from participants’ perspectives (Alhojailan, 2012). All transcripts were double-coded through NVIVO 1.7 to ensure consistency. A codebook with themes alongside exemplary quotes was developed and iteratively refined. Differences were reconciled by discussion with the research team until consensus was achieved. We then identified subthemes from the coded data that aligned with the five work system components of the SEIPS model.

Throughout analyses, we used the following criteria to ensure the trustworthiness of our research methods: credibility (prolonged engagement, persistent observation, data collection triangulation, and researcher triangulation); transferability (detailed description of the context); dependability (ensuring the research process is logical, traceable, and clearly documented); confirmability (peer review, triangulation); audit trails (keeping records of the raw data, field notes, transcripts, and a reflexive journal); and reflexivity (documentation of daily logistics of the research, methodological decisions, and rationales; Nowell et al., 2017). These criteria helped us to ensure we methodologically and rigorously yielded meaningful results from our data.

Results

Several themes that aligned with structures of the SEIPS model were identified from and repeated across the interviews with autistic adults (Table 2).

Table 2.

Structures and factors of the SEIPS model.

Work System	Structures	Factors
	Person (autistic adult)	Socioeconomic status
		Educational attainment
		Work status
		Physical and mental health problems
		Social support
		Sensory differences
		Executive functioning skills
	Organization (healthcare settings’ organization and climate)	Length of appointments
		Doctors’ understanding and/or prior training in adulthood ASD
		Consistent and comprehensive healthcare coverage
	Technologies and Tools (health information technologies)	Accessibility and usability of healthcare management software
		Online appointment management
		Online options for doctor–patient communication
	Tasks (visiting a doctor, accessing preventative care, taking medications, completing medical paperwork)	Physical and psychological demands
		Doctor–patient communication styles (e.g. eye contact)
	Environment (physical healthcare spaces)	Lights
		Smells
		Noises
		Textures
		Physical accessibility
		Accessible transportation

ASD: autism spectrum disorder.

Work system: person

Carayon et al. (2006) describes the “person” as “the individual at the center of the work system.” For the purposes of this study, the person at the center of our work system is the patient receiving care, or the autistic adult. Autistic adults in our study identified several factors that could serve as a barrier or facilitator, that they felt impacted how they received care, including their socioeconomic status, their educational attainment and work status, the magnitude of their physical and mental health problems, and their instrumental social support:

So, I think two big issues I wanted to make sure to mention that are worth looking into is just reliable transport. I, I know that applies to a lot of different categories of people and also making sure that our health coverage is better because that’s always been a struggle as well, or at least in recent years . . . I feel like I kind of fall between cracks on both of those because I currently am underemployed, so it’s difficult to budget in extra money for transportation. I definitely can’t afford a vehicle right now with the price of used cars just being through the roof and so paying for, you know, a taxi or other things is difficult. Um with healthcare, I don’t currently get full healthcare coverage offered through my job, so you know. I am currently on a different plan from a past partner, but I’ll be going back to the ACA again in January and um, you know, it’s just never enough coverage for dental, for vision, for health, mental health. It’s just never enough and all of that can be really difficult because I don’t believe right now that I qualify for, you know, I don’t have the official autism diagnosis. That’s been out of economic range for me to get and so I don’t qualify for like Medicare or [Medicaid] because I still make enough, but I’m over that right? But I still need some help . . . I used to work, you know, full time. I hopefully will again if I can get a better job, if I can deal with my back pain. So, it’s just there’s a lot of different things that are really difficult, especially for people like myself and I know a handful of other people that are just between. (Participant 7; age range: 40–45, nonbinary, Hispanic and White)

Notably, participants attributed many of the person-level factors to their own autism diagnosis including sensory differences and executive functioning skills. One autistic adult said:

So the things that qualify me for a diagnosis on the spectrum are the things that make it hard for me to function. Um hence the diagnosis that makes sense that’s been affecting me my entire life and started from a young age you know. So if I had different coping mechanisms I mean I just don’t have resilient coping mechanisms. I don’t have a resilient network of support. (Participant 2; age range: 35–40, male, White)

Their sensory differences and executive functioning skills often hindered their ability to communicate and advocate for their healthcare needs. Autistic adults noted they needed to see a doctor for preventive or emergency care, but often their executive functioning skills stood in the way. Executive functioning skills may involve cognitive capacities like planning, working memory, impulse control, inhibition, flexibility, as well as initiating, monitoring, and switching tasks (Hill, 2004; Kiep & Spek, 2017):

It’s, it’s probably the bane of my existence, it is the biggest thing is just, uh, executive functioning um, kind of being, you know, trapped in a prison of your own mind, which really sucks um, you know wanting to go out and you have all the motivation you want to do something that generates the anxiety, but yet you can’t move and do something about it and you’re just sitting there pressing on the, you know, on the gas you know revving it in neutral. (Participant 18; age range: 25–30, nonbinary, indigenous)

This autistic adult wanted to go to the doctor and had the motivation to do so, yet their executive functioning “trapped” them in neutral.

Furthermore, most autistic adults felt their healthcare providers had limited training or understanding of the unique ways autism presented in adults:

Well, they’re likely to hear the awareness campaigns for kids, that’s what they’re most familiar with. If you’re not in developmental disability actively, if you’re not in that special little niche, they’re likely to get maybe an hours worth of training in their . . . If they’re if they’re if they’re a new resident and if and if that. So they’re not going to know about women. They’re not going to know about people of color getting a late diagnosis, a lot later. We’re not going to know about masking. They’re not going to know about, about the fact the function labels are garbage that they don’t, that they don’t accurately. That they mostly tell you what a person looks like and not what they actually need. They don’t tell you that behavior is communication, that people who don’t speak can understand things. (Participant 3; age range: 30–35, female, White)

Finally, many autistic adults noted that their social support, such as a partner, parent, sibling, or care professional, served as facilitators to receipt of quality care. Members of social support systems served as sounding boards to discuss health matters and attended their appointments with them to help foster communication between the autistic adult and their provider. That said, some autistic adults noted their lack of social support as a barrier to achieving optimal health:

And if I had closer friends or a wife, or a husband, a boyfriend, they can step in and they can take care of me. But I don’t have that. I’m like alone. I actually don’t have any emergency contacts. So and then at some point I might have a bad thing happen. And they’ll look at my chart and they’ll see autism. Oh, he’s autistic and then they’ll assign me some legal guardian . . . I catastrophize like that. I end up with a corporate guardian. I lose any independence and I end up in some group home somewhere. And they’re like, well you have autism and you can’t take care yourself. (Participant 4; age range: 35–40, male, Black or African American and White)

Work system: organization

The organization within the work system model describes the culture and overall structure of the healthcare organization (Krupp et al., 2018). Most autistic adults identified the organization as a highly impactful structure. For instance, many autistic adults noted that the brief length of doctor’s appointments, that are often organizational standards, were inadequate to address all their needs and impacted the strength of their relationships with their providers:

I think the hardest thing going into healthcare provider you know, medical, mental health or physical appointments is um making sure that I write down all of the, the possible, so ahead of any kind of appointment for weeks ahead, or months, or whatever it is you know; I always keep notes on somewhere that I can jot down questions that I might have, and I go in with notes because I find that otherwise I leave feeling like I’ve been through a whirlwind, and I haven’t gotten any answers because I think a lot of providers just go so fast. I know, I, I’ve worked in health insurance. I’ve also worked in clinics so I understand from the provider standpoint you know how much of a time crunch they have and, and things like that. It’s, it’s not great though, because I also have an auditory processing diagnosis so it’s hard for me to, when they’re speaking super-fast and going through everything and they’re constantly interrupting um, so I feel like I need to have that physical list in front of me to be able to make sure that I’m going through everything and that they don’t always let me get through the list and that’s really frustrating also, because if I took the time to really think about it and write it down. (Participant 7; age range: 40–45, nonbinary, Hispanic and White)

Ultimately, many autistic adults described healthcare settings as unique and demanding social environments that required them to behave a certain way to receive the care they need:

I mean healthcare is like another job interview, it’s another social environment in which if you don’t play by the right rules, you’re not going to get what you need. (Participant 1; age range: 40–45, male, White)

Work system: technologies and tools

Within the SEIPS model, technologies and tools may include health information technologies and medical devices as well as their usability (Carayon et al., 2014). The accessibility of healthcare management software, including systems for appointment management, was discussed by almost all autistic adults interviewed for this study:

I would say the biggest issue I have . . . is booking appointments because my my preference is to be able to schedule things online. I don’t like making phone calls and I never have and always when having you know when the option is available to me, I have always preferred to be able to like, you know, schedule something online or request an appointment and have them call me even that’s better, it’s making the phone call that’s which I’ve gotten better at, and is getting easier. But it’s something I’ve just really struggled with for a very long time. (Participant 21; age range: 25–30, nonbinary, White)

Autistic adults repeatedly noted that the ability to make an appointment online, rather than over the phone, or email a medical question to their doctor served as a critical facilitator to their receipt of care:

I think the other piece is the appointment making. I’m lucky in that most of my providers are on a portal so I can just schedule online and and sometimes it’s it’s a whole back and forth like I can’t just like choose an appointment slot. I have to like message them and then they pass it on to the admin and the admin writes back and it’s like here’s this time. But then the time I write back. Right? ‘cause I’m not going to call them. Like I, I don’t know if it’s ‘cause I’m autistic or millennial, but I’m not making those phone calls and so like that’s another reason I haven’t scheduled PT is ‘cause I know I have to call them. (Participant 22; age range: 35–40, nonbinary, White)

Work system: tasks

Within the SEIPS model, the individual at the center of the work system uses technologies and tools to perform care-related tasks (Carayon et al., 2014). Work system tasks identified by autistic adults included visiting a doctor for routine check-ups or when something is bothersome, accessing preventive care, taking medications, and completing intake forms and medical paperwork. Completing these tasks proved to be more challenging for many autistic adults due to their physical and psychological demands. For example:

A lot of times I get hurt; I doubt myself. You know, and about things, I’m like is this really bad enough to bring up to somebody else? Will it resolve itself? Will you know they think I’m making a mountain out of a molehill? You know and, you know, you know, and already they try to discount people for being women. You know ‘cause you know, they say, well, you’re just over complaining and that’s just people say, oh, I see, well that’s just life. You just have to live with those things or this, or that so. Sometimes I don’t know if it’s bad enough to bring myself in or not, you know. So, making that decision and then making sure I’m clear and people understand me. You know, a lot of these people think I’m not you know, I use these things to calm myself because doctors, offices, hospitals have always made me nervous or anxious, and people think you’re not paying attention or you don’t care, or you discount them, especially the eye contact thing. (Participant 11; age range 50–55, female, White)

This autistic adult noted the challenges of deciding to visit their doctor. They worried their ailment was not bad enough, that they would be discounted based on their gender or diagnosis, or their style of communication would be misunderstood. An atypical pattern of eye contact behavior is one of the most common characteristics among autistic individuals (Madipakkam et al., 2017; Senju & Johnson, 2009). Even further, available evidence suggests that this reduced fixation on the eyes is more prominent for autistic adults under cognitively demanding conditions (Senju & Johnson, 2009). This autistic adult, like many others in our study, feared their sensitivity to eye contact would be interpreted negatively by their healthcare providers, thus impacting the quality of care they would receive.

Work system: environment

Within the SEIPS model, the environment is the physical space in which care is provided (Krupp et al., 2018). For autistic adults in our study, the physical environment included doctor’s offices, dentists, emergency rooms, and urgent care clinics. Considering the sensory differences described above, autistic adults in this study identified many physical factors that impacted their receipt of care in these spaces:

Okay, well first of all, those environments are always really difficult because sensory wise it’s just a whole other layer for me. I have, I’m really sensitive to bright lights and smells—in particular, those two things. Also, certain noises or pitches and all of those are difficult in pretty much every healthcare setting. (Participant 7; age range: 40–45, nonbinary, Hispanic and White)

The fluorescent lighting, smells, and noises in many healthcare settings greatly influenced whether this autistic adult would visit a doctor if something was bothering them or feel comfortable advocating for their needs while there. Sensory sensitivity is often a core characteristic of ASD (Robertson & Baron-Cohen, 2017). Many adults in our study, experienced a hypersensitivity to bright lights, certain smells, textures, and loud or unpredictable sounds. This hypersensitivity was heightened for some in situations that caused nerves or anxiety, like healthcare settings. In addition, the accessibility and layout of many healthcare spaces posed physical barriers to navigating their healthcare, especially for those who did not drive:

Oh yeah, I mean leaving the house and physically navigating to get someplace oftentimes it’s very confusing, just parking, I mean, if I had to drive myself it was, I would limit me. I wouldn’t go to doctors that were too far away because I just couldn’t get there. I just could not get there . . . but getting there was one of the hardest things once you get there it’s very, oh my gosh, is it challenging to navigate you have to go to this desk these receptionists and you don’t know they’re not very. . .they have a job to do and their job is very specific that you go there with one thing . . . I don’t even know I’m terrified of these spaces, these are very open spaces, they’re very noisy spaces, there’s a lot of people, I don’t know how to get to the right place. I mean sometimes it’s just intimidating where you’re just like and you want that person at the desk to be kind of like. I mean, unfortunately, this sounds dumb because it’s like you want them to hold your hand and be like no, no no, you very specifically walk down here, you sit in one of these chairs, you like I just need that kind of like, honestly, like that level of what to expect because I mean, I just don’t do well when I don’t understand even like physically how to put myself in a physical space is so hard for me. And so, you try to put me in a big open waiting room and I have to make decisions like where to sit down, how to, how to navigate it. (Participant 8; age range: 55–60, female, White)

Care processes and patient outcomes

According to the SEIPS model, care processes feed into patient outcomes (Carayon et al., 2014). Care processes are influenced by work system design: a care process may involve a series of tasks performed by a patient using various tools and technologies within multiple physical environments, that all function within broader organizational contexts (Carayon et al., 2006). Care processes for autistic adults may involve receiving routine, preventive, and emergency care when needed from a variety of healthcare providers, including physicians, dentists, psychologists, and therapists. The SEIPS model emphasizes feedback loops from these care processes to work system structures. A negative process or outcome can signal a need for system redesign. Optimal health outcomes prioritized by autistic adults in this study included a limited presence of pain or illness both physically and psychologically, having energy to get through the day, the ability to participate fully in life activities, personal satisfaction, quality of life, and a positive perception of aging. Their ability to attain these health outcomes was influenced by many connected factors within each work system structure. In response to an interview question asking whether they see a doctor regularly, one autistic adult discussed the multiple challenges that prevented them from doing so:

I do not. And I don’t feel good about that. Mostly that has been because sort of an executive functioning thing in terms of first of all, I don’t own a car. So any place that I have to get to is going to be by bus, so that’s going to be more of an investment of time and figuring that all out and that kind of stuff. Managing like insurance kinds of stuff has never been intuitive for me. So knowing all of what is covered or not all that kind of stuff, there’s just this like I feel like I’m able to do that, but there’s this extra layer of like hesitance on the basis of that also. Independent of cost, just the nature of the system and the complexities themselves. (Participant 5; age range: 35–40, male, White)

As depicted within the SEIPS model and participant interviews, healthcare work systems are inherently multifaceted and influenced by environmental context.

Discussion

This study used a qualitative approach to investigate the healthcare experiences of autistic adults. We aimed to better understand the challenges autistic adults have in managing their health and interacting with healthcare systems. After initial coding, we chose to connect and organize findings through the SEIPS model. Having the patient at the center of our work system model helped us to identify deficiencies in the healthcare system that may impair an autistic adult’s capacity to receive quality care (Carayon et al., 2006). Through our analysis of interviews with autistic adults, barriers and facilitators in each work system structure that impact care processes and outcomes for autistic adults were identified.

At the person-level, autistic adults noted that their socioeconomic and work status, educational attainment, physical and mental health, social support, sensory differences, and executive functioning skills influenced their receipt of quality care. Many autistic adults felt their healthcare professionals had limited understanding of or prior training in working with autistic adults. At the organization-level, autistic adults specifically noted that length of appointments and access to consistent and comprehensive healthcare coverage were key factors to acquiring needed care. Accessibility of healthcare technology and tools, including the ability to make an appointment or communicate with their doctor online, were noted as important components as well. Autistic adults in this study identified many physical factors including the light, sounds, smells, and physical accessibility of healthcare settings as critical to their receipt of quality care.

Altogether, the barriers and facilitators identified in past and present studies would suggest that interventions targeted at improving executive functioning skills in autistic adults may help to improve healthcare outcomes. Interventions might include lengthening appointment times for autistic adults, providing training to doctors on supporting autistic adults, and ensuring online options for appointment management and communication. To support autistic adults in successfully engaging in healthcare tasks, such as initiating preventive care, interventions might include creating tools for autistic adults to communicate their needs, pains, or ailments in non-normative ways. Finally, interventions to address inaccessible healthcare environments might include providing sensory rooms, with minimal light and noises, or allocating funds for accessible transportation options outside driving.

The SEIPS model, however, emphasizes the need for the entire work system, rather than just one structure within it, to be well-designed for optimal performance (Carayon et al., 2006). To create and maintain a balanced work system that provides high quality and safe patient care, interventions must target improvement across work system structures. For instance, a factor of the work system that is extensively focused on is the skills, background, and training of the individual healthcare provider (Carayon et al., 2006). Nevertheless, a doctor with excellent skills related to providing care to autistic adults, may not provide the highest quality and safest care possible because insurance requires them to hold short appointments, their healthcare software is outdated, and the autistic adult in their care is experiencing a hypersensitivity to the lights and noises in their office space and is thus unable to communicate with them. The double-sided arrows depicted in the SEIPS model emphasize the interconnectedness of each work system structure and the ways in which they simultaneously contribute to patient care processes and outcomes. This is especially critical to emphasize in work with autistic adults given the very nature of the diagnosis as a “spectrum.” The healthcare work system itself is experienced on a spectrum thus requiring multiple points of intervention, across all structures, to ultimately improve outcomes for this population.

Limitations

Although this study is intended to provide new insight into the healthcare experiences of autistic adults, several limitations must be considered. First, the sample likely reflects self-selection bias of those passionate about their healthcare experiences and improving those for autistic adults. Furthermore, although qualitative work is not intended to be generalizable, we acknowledge that the experiences of those in this sample might not reflect the experiences of other autistic adults because the information was drawn from a relatively educated, middle to higher-income, and geographically homogeneous sample within the United States. Sampling bias may have occurred as a result of initially recruiting through disability service providers. That said, we used many strategies to recruit a more diverse sample of autistic adults including posting flyers in community centers and recruiting from open outlets such as Reddit and Twitter. Our model may also not be generalizable to adults with other developmental disabilities as we only recruited for those with a formal or informal autism diagnosis.

Implications

Through the SEIPS model of work system and patient safety, we described the interactions between autistic adults and their healthcare systems. Building on prior research in this area, the SEIPS model is useful for elucidating the entire healthcare work system instead of focusing on one or two aspects of the system and treating those aspects in isolation (Carayon et al., 2006). Based the results of our qualitative study, we propose a SEIPS model for autistic patient safety (Figure 1). This innovative model suggests that to improve healthcare outcomes for autistic adults, interventions must target personal and provider-level factors, as well as the organizational, environmental, and technological systems. It is descriptive, not prescriptive; a framework for how to think about different factors in a work system, their interactions, and possible healthcare outcomes that may result from these interactions (Carayon et al., 2006). It is intended to serve as a launching point for targeted future research, practice, and intervention. Researchers can use this model to identify potential predictors by helping them think of all the relevant factors in the system. The model can support interventionists and practitioners to ensure that all relevant technological, organizational, environmental, and individual factors are being considered.

Figure 1.

The SEIPS model of autistic patient safety.

Ultimately, this model operates under the assumption that inclusive, systems-level interventions built in partnership with autistic stakeholders have the potential to reduce healthcare costs and improve the overall health, quality of life, and longevity of autistic adults.

When we consider the physical and mental health challenges prevalent among autistic adults, we must intervene in ways that support the autistic adult within a larger interconnected healthcare work system. Ideally, strategies to improve health and healthcare experiences of autistic adults would include a full system redesign that supports sensory-friendly physical environments, trainings for healthcare providers on ASD communication styles, longer appointments, online health management systems, and individual tools for supporting executive functioning. Reimagining an inclusive healthcare system for autistic adults is certainly complex. However, our findings, informed by autistic adults themselves, serve as a critical launching point for research, practice, and policy intervention to improve long-term outcomes for this growing community.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by grants from the National Institute of Child Health and Human Development (U54HD090256; P50HD105353), the National Center for Advancing Translational Sciences (UL1TR002373; KL2TR002374; KL2TR000428), the National Institute of Mental Health (R01MH132218), and the UW Fall Competition through the Wisconsin Alumni Research Foundation. This project is also supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under cooperative agreements UT6MC45902 Autism Transitions Research Project (ATRP) and UT2MC39440 Autism Intervention Research Network on Physical Health (AIR-P). The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. Government.

ORCID iDs

Kiley J McLean

Lauren Bishop

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