Independent Community Mobility and Driving Experiences of Adults on the Autism Spectrum: A Scoping Review

Autistic adults have lower rates of community participation (Myers et al., 2015), particularly in work or training (Shattuck et al., 2012), and poorer psychosocial outcomes (Zimmerman et al., 2018), than the general population. Independent community mobility can be a barrier to participation in education, work, health, and social activities, especially for young autistic adults (Deka et al., 2016; Zalewska et al., 2016). Community mobility bridges physical distance between home and the community spaces where participation occurs (American Occupational Therapy Association, 2010). Reduced independent mobility can limit participation and contribute to feelings of depression and isolation (Lubin & Feeley, 2016). In contrast, improvement in community mobility may increase community participation and lessen caregiver burden (Deka et al., 2016); in addition, autistic adults who have some means of independent community mobility have a 5 times higher chance of gaining employment (Zalewska et al., 2016).

Achieving independence in public transportation or driving can be challenging for some autistic adults. Low rates of driving licensure have been reported in several countries, with licensure rates of high-functioning autistic adults estimated at approximately 30% by age 21 yr in the United States (Curry et al., 2018) and 60% by age 30 yr in Australia (Baldwin, 2013). These statistics imply that a high number of adults with high-functioning autism do not achieve licensure, for reasons not yet well understood, and may need alternative transportation options.

Difficulties obtaining a license may lead to a preference for public transportation (Falkmer et al., 2015). Even so, several U.S. and Australian studies have found that public transportation environments can also pose difficulties unique to the experience of autism (Deka et al., 2016; Haas et al., 2020). Development of community mobility skills in adolescence and young adulthood may be complicated by autistic traits such as poor understanding of the social world, restricted interests, and altered sensory processing (American Psychiatric Association, 2013).

Two systematic reviews focused on barriers to driving and vehicle-based transportation (Lindsay, 2017) and adolescent driver difficulties (Silvi et al., 2018). Both reviews identified that the voice of autistic people is missing in driving and public transportation research. For occupational therapy practitioners to provide holistic care, it is vital to understand community mobility and driving experiences of autistic adults in the wider context of supporting function in the community. The Person–Environment–Occupation–Performance (PEOP) Model (Baum et al., 2015) is widely used internationally to conceptualize multidimensional relationships among person, environment, occupation, and performance. In this scoping review, we used the PEOP Model to address the gap in research evidence depicting autistic adults’ experiences in context. Occupational therapy clinicians, researchers, and policy advocates require the perspective of autistic adults to achieve meaningful increases in community mobility and driving independence to support participation for this population.

In this study, we had two objectives:

• 1. Chart research focus by systematically mapping all empirical studies regarding community mobility, driving, and autism

• 2. Conduct a targeted scoping review to synthesize information regarding the community mobility and driving experiences of autistic adults from their perspective.

We drafted our protocol using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (Tricco et al., 2018). For both objectives, original research was included if it was published or conducted between 2000 and 2019 and written in English. For Objective 1, inclusion criteria were any empirical community mobility or driving studies, published in peer-reviewed journals, reporting data involving samples older than age 5 yr on the autism spectrum. For Objective 2, the inclusion criteria were reported data specifically related to experiences of autistic adults or their spokespeople in natural contexts, excluding simulation.

CINAHL, TRID, ProQuest Central, ProQuest Dissertations, PsycINFO, Scopus, and MEDLINE databases were searched until November 2019. The search was drafted with an experienced librarian, alongside team discussion. The following key words were used for the population: autistic disorder, Asperger syndrome, developmental disabilities, child developmental disorders–pervasive, autism, and autism spectrum disorders. These key words were combined with the following terms relating to community mobility: community mobility, transport, transportation, public transport, vehicular transport, school transport, car, car driving, railroad, automobile, bus, ferry, boat, aeroplane, walk, pedestrian, bike, bicycle, and flying. Limits applied included English, published date of 2000–2019, human, and age groups older than 5 yr. Final search results were exported to EndNote X7 (Clarivate, London, England), and duplicates were removed. The search was supplemented by scanning reference lists of relevant reviews and autism-specific research program outputs. The first author screened records initially at the title level. Next, the first and fourth authors independently reviewed abstracts and then full-text records. Any disagreement on selection and data extraction was resolved by discussion.

For Objective 1, data were charted for empirical studies published in peer-reviewed journals, extracting the mode of transport (public transportation, driving, pedestrian and cycling, combination of modes, car transport, and school transport), study context (simulated, natural environment, survey, and controlled environment), and country. The first and fourth authors independently extracted data. For Objective 2, we created a template to chart the data, including objectives, country, author, design, key findings related to experiences, and reported limitations. The first author independently extracted and charted eligible studies by analyzing, in detail, the key experiences. These studies were checked first by the fourth author and then by the whole team through an iterative process.

Data from Objective 1 were synthesized to present a broad evidence map of all research about community mobility, driving, and autism, highlighting primary areas of research focus and defining major gaps. Data from Objective 2 focused solely on the experiences of autistic adults themselves, reported by self or a spokesperson. Results of each included study were reviewed for Objective 2 (n = 13) to extract characteristics and relevant findings (Appendix A). To further understand experiences of community mobility, we coded the results of each included study for Objective 2 with NVivo (Version 11; QSR International, Burlington, MA) using the PEOP Model (Baum et al., 2015) to synthesize experiences by personal narrative, occupational performance contexts (pedestrian, public transportation, novice and experienced drivers), and participation outcomes.

Our initial search yielded 1,082 unique records. Figure 1 illustrates the stages of record exclusion and selection. For Objective 1, 999 titles and 21 abstracts were excluded. After discussion, 6 additional literature, systematic, and scoping reviews were excluded because they repeated included studies, leaving 56 empirical studies. An evidence map (Figure 2) was then created to chart the context and mobility modes. For Objective 2, 1,029 titles and 29 abstracts were excluded, leaving 24 full-text studies to be retrieved and assessed for eligibility. Of these, 13 met inclusion criteria for this scoping review.

Most studies were from the United States (n = 27) and Australia (n = 10), with a small number of studies from Europe (n = 5), Canada (n = 1), the United Kingdom (n = 2), and Israel (n = 1). Most research was on driving (n = 27). Other research topics included pedestrian safety (children or adults) or teaching adolescents and children to ride bicycles (n = 9), general community mobility needs (n = 4), public transportation (n = 4), car passenger transportation safety (n = 2), and school transportation (n = 2). A paucity of research involving and privileging the voices of autistic people to express real-world experiences was identified, and many studies used simulators and virtual-reality technology (n = 20) or surveys (n = 10) rather than natural contexts (n = 14).

We selected articles for this scoping review that focused solely on describing autistic adults’ experiences with community mobility and driving (n = 13). All studies are described in Appendix A and are categorized as follows: (1) systematic reviews investigating needs and barriers in driving and public transportation, (2) studies examining experiences of needs and barriers across all community mobility and driving modes, (3) studies examining public transportation experiences, and (4) studies examining experiences of learning to drive and being an experienced driver. The studies were conducted in Australia (n = 7), the United States (n = 3), and Europe (n = 3). Study designs were primarily descriptive (n = 6) and cross-sectional (n = 4).

Experiences of difficulties were recorded for pedestrian navigation of community environments, public transportation, and beginning and experienced driver contexts; however, sample characteristics differed, with some studies focusing on high-functioning autism (n = 7), some with mixed functional levels (n = 2), and some undeterminable (n = 2). Few studies elicited experiences from the autistic person’s perspective, with most studies using parents’ perspectives (studies, n = 3; participants, n = 855), survey responses of autistic people (studies, n = 3; participants, n = 125), retrospective analysis of public viewpoints of autistic people (studies, n = 2; participants, n = 107), and interviews and focus groups involving autistic people (studies, n = 4; participants, n = 77).

Only 7 studies used open-response methodologies to examine the personal perspectives of community mobility and driving from autistic adults themselves (Almberg et al., 2017; Haas et al., 2020; Kinnaer et al., 2016; Lubin & Feeley, 2016; Ross et al., 2018; Silvi & Scott-Parker, 2018; Vindin et al., 2019), and 7 studies jointly focused on the perspectives of autistic adults and their spokespeople (Almberg et al., 2017; Cox et al., 2012; Deka et al., 2016; Lubin & Feeley, 2016; Ross et al., 2018; Silvi & Scott-Parker, 2018; Vindin et al., 2019). Two studies were systematic reviews (Lindsay, 2017; Silvi et al., 2018), and 2 were cross-sectional studies using a Q-sort (Falkmer et al., 2015; Chee et al., 2015). Overall, our findings indicate a paucity of research focusing specifically on the perspectives of autistic adults.

In the first of the two systematic reviews identified, Lindsay (2017) focused on factors affecting driving and vehicular transportation of autistic adults and children. The review synthesized studies (n = 22) relating to school, assisted transportation, public transportation, and driving. The second review (Silvi et al., 2018) synthesized studies (n = 9) contributing to understanding road safety risks and challenges that adolescents experience as beginning drivers. The combined total of studies in these reviews (n = 31) included 5 studies that appeared in both. These reviews indicated that autistic adults and adolescents face challenges affecting driving and community mobility and concluded that it is essential to elicit firsthand perspectives of autistic people to better understand these experiences.

Three empirical studies investigated general needs and barriers in community mobility, across driving, public transportation, assisted transportation, and pedestrian modes. Two studies, which originated from the same project, investigated travel issues for autistic adults in New Jersey through the use of a survey (Deka et al., 2016) and focus groups (Lubin & Feeley, 2016). The third study (Kinnaer et al., 2016) was a qualitative analysis of published autobiographies of autistic adults (n = 6) that synthesized experiences of community environments. Although these studies represent a broad spectrum of functional levels of autistic adults, they reflect common experiences of feeling vulnerable, concerns with the social demands of traversing community spaces, and increased difficulty in environments of sensory complexity. These studies indicate that early, targeted community mobility training and attention to meeting the needs of autistic adults regarding public transportation and urban design are needed.

Two empirical studies specifically focused on the experience of autistic adults using public transportation in Australian urban environments (Falkmer et al., 2015; Haas et al., 2020). These studies offer evidence that autistic adults experience social, sensory, and cognitive demands in public transportation and community environments. These demands intersect with personal autistic expressions of social communication challenges, sensory processing issues, and cognitive demands that can contribute to anxiety. These studies indicate the importance of autistic adults’ practicing and learning strategies to become confident and independent.

Five empirical studies explored the experiences of learner or novice autistic drivers (Almberg et al., 2017; Chee et al., 2015; Cox et al., 2012; Ross et al., 2018; Vindin et al., 2019). Parents indicated that learner drivers experienced difficulty with learning to interpret and anticipate actions of other drivers, managing unexpected changes in the driving environment, tolerating road rule violations, regulating emotions, and sustaining attention (Cox et al., 2012; Ross et al., 2018). Learner drivers experienced anxiety, driving only when necessary because of concerns about parking, managing lane changes, heavy traffic, and not reacting in time or crashing (Chee et al., 2015). They also expressed difficulty with concentration, multitasking, and assessing and reacting to unpredictable situations, especially when needing to break traffic rules (Ross et al., 2018). Studies that used professional driving instructor observations and self-report indicated experiences of difficulty with (1) translating theory to practice, (2) adjusting to unfamiliar driving situations (Almberg et al., 2017), (3) executive function, (4) motor coordination, (5) social communication, and (6) emotional regulation, consistent with difficulties observed in simulated contexts (Patrick et al., 2018; Sheppard et al., 2017). Instructors also described learner difficulties with multitasking, concentration, predicting other road users’ actions, and handling situations in which road rule application is unclear (Ross et al., 2018).

In natural contexts, the most considerable challenges were maintaining attention and cognitive inflexibility (Vindin et al., 2019). Lubin and Feeley (2016) found that nondrivers and licensed drivers who were reluctant to drive had anxiety about getting lost, being in a crash, or handling law enforcement stops. They also expressed difficulties with driving skills, such as maintaining attention, navigating, anticipating the actions of other drivers, reacting quickly, and reading the driving environment. Motivation to learn also affected outcomes for autistic people learning to drive (Ross et al., 2018; Vindin et al., 2019). These studies suggest that learning to drive is difficult and that learner, novice, and reluctant autistic drivers need targeted support. Real-world driving can challenge cognitive flexibility and attention, increasing anxiety. Motivation to learn to drive and mature emotional regulation may be predriving considerations.

Two empirical studies contained data relating to more experienced drivers. One study conducted a limited number of focus groups containing 30% drivers with mixed experience levels (Lubin & Feeley, 2016), in which nondrivers and drivers expressed anxieties around dealing with high-stress situations and certain road features they found difficult to navigate. In contrast, more experienced autistic drivers indicated feeling safe and confident with driving (Lubin & Feeley, 2016) and preferred driving over public transportation (Falkmer et al., 2015). Experienced autistic drivers reflected that it was important to have insight into personal factors affecting driving ability, such as self-regulation and awareness of their personal triggers for autism-related functional changes, to know when to self-limit driving (Lubin & Feeley, 2016).

This scoping review has achieved, for the first time, two clear outcomes: (1) an evidence map charting research focused on autism-specific community mobility and driving and (2) detailed insight into the experiences of autistic adults with community mobility and driving. The evidence map illustrates that a large proportion of research is based on driving in simulated, as opposed to natural, contexts (Figure 2). This scoping review highlights the paucity of research privileging the autistic voice. Not everyone on the autism spectrum wants or is able to drive, and the many community mobility alternatives equally warrant research focus. The lack of studies championing the autistic voice limits applied research to support person-focused occupational therapy intervention in this area.

Occupational therapy practitioners are uniquely skilled to understand the complexities of community mobility and driving for autistic adults. Autistic adults need to negotiate dynamic, complex, and varied environments in community mobility. Pedestrian, public transportation, and driving environments involve different challenges across countries, between urban and rural environments, and from night to day. Requisite skills (from pedestrian mobility to public transportation and then driving) gradually increase in cognitive, information processing, and environmental demands and might arguably represent a continuum for graded community mobility skill acquisition. Using the PEOP Model (Baum et al., 2015), we synthesized results from the empirical studies (n = 11) in Figure 3. Documenting individual experiences of community mobility in terms of person and environment factors for pedestrian navigation of community environments, public transportation, and beginning and experienced driving highlights both available evidence and gaps to inform current occupational therapy practice and further research.

Sensory processing challenges differ across community mobility and driving environments. In community spaces, sensory sensitivity results in the need for environments to innately reflect their purpose and to have a sense of enclosure or retreat (Kinnaer et al., 2016). On public transportation, autistic adults can experience discomfort related to the sensory demands of crowding or being touched (Falkmer et al., 2015; Haas et al., 2020).

Autistic learner drivers need to quickly process sensory information in complex driving environments (Cox et al., 2012), such as freeways, or when changing lanes (Chee et al., 2015), and they experience anxiety about reacting in time or having a crash (Chee et al., 2015). Experiences of sensory overload are documented for both learner (Vindin et al., 2019) and experienced autistic drivers (Silvi & Scott-Parker, 2018).

Difficulties with spatial awareness are experienced by autistic people for wayfinding and traffic judgment during community mobility and driving. In the United States, studies have found that autistic adults experience difficulty with navigation and wayfinding when using public transportation (Deka et al., 2016). In Australia, autistic adults indicated that bus travel was more difficult than services with defined stations (Haas et al., 2020). Experienced autistic adult commuters did not report these navigation issues (Falkmer et al., 2015), a finding that may highlight benefits of practice. Difficulty reading maps and following directions were reported by experienced, reluctant, and novice drivers and by nondrivers (Lubin & Feeley, 2016).

Spatial awareness for judging distance and speed can be challenging for some autistic adults, both for crossing the road as a pedestrian (Deka et al., 2016; Kinnaer et al., 2016) and for judging distance for parking as an experienced driver (Lubin & Feeley, 2016). Some autistic learner drivers reported experiencing spatial awareness difficulties (Vindin et al., 2019); however, other studies have indicated no difficulty with the maneuvering and spatial elements of driving, such as lane positioning and turning in T junctions (e.g., Cox et al., 2012).

Difficulty with maintaining attention and managing distractions has been identified across community mobility environments. For autistic pedestrians, attention and distractibility were identified by parents as concerns in traffic environments (Deka et al., 2016). Maintaining attention (Cox et al., 2012; Lubin & Feeley, 2016; Ross et al., 2018; Vindin et al., 2019) and shifting attention to different aspects of the driving environment, such as road signs and other road users (Almberg et al., 2017; Cox et al., 2012), are challenging for autistic learner drivers.

Anxiety arising from uncertainty is experienced across community mobility environments (Haas et al., 2020). Predictable, familiar landmarks may help to ameliorate feelings of chaos and unpredictability in community environments (Kinnaer et al., 2016). The unpredictability of public transportation can create anxiety; however, detailed planning, preparation, family support to undertake new routes (Deka et al., 2016; Haas et al., 2020; Lubin & Feeley, 2016), and transportation apps (Haas et al., 2020) can foster confidence and success. Likewise, autistic learner drivers experience stress in new situations (Almberg et al., 2017; Chee et al., 2015; Vindin et al., 2019) and have difficulty tolerating unpredictable traffic environments (Chee et al., 2015; Cox et al., 2012; Ross et al., 2018). Difficulties with cognitive flexibility (Vindin et al., 2019) and frustration with other drivers breaking road rules (Almberg et al., 2017; Cox et al., 2012) may also contribute to a sense of unpredictability in the driving environment.

Autistic adults experience difficulties with social communication across community mobility environments. Public transportation environments host a microcosm of human diversity and present particular social communication challenges. Parents indicated concern about autistic traits that may attract negative responses from community members (Lubin & Feeley, 2016), such as transit operators or other passengers (Deka et al., 2016), and about situational awareness of human behavior hazards (Lubin & Feeley, 2016). When things go wrong on public transportation, autistic adults prefer contacting family rather than transit operators (Haas et al., 2020), indicating difficulty communicating under stress in community environments.

Understanding social communication and the hidden language of driving is also a common challenge for autistic learner drivers (Lindsay, 2017; Silvi et al., 2018). Difficulty reading traffic, such as predicting hazards (Almberg et al., 2017; Lubin & Feeley, 2016; Ross et al., 2018; Vindin et al., 2019), and interpreting the actions of other drivers (Cox et al., 2012; Lubin & Feeley, 2016; Vindin et al., 2019) are specific driving social communication challenges.

Planning, preparation, and cognitive strategies to use public transportation have been found to be strengths for autistic adults with low support needs (Haas et al., 2020). However, some higher level executive skills are challenging for autistic learner drivers, who can experience difficulty with translating theory to on-road environments (Almberg et al., 2017) and flexibly applying road rules (Almberg et al., 2017; Cox et al., 2012; Ross et al., 2018). These difficulties are not reflected in the views of experienced autistic drivers (Chee et al., 2015; Lubin & Feeley, 2016; Silvi & Scott-Parker, 2018), suggesting that further research with larger sample sizes is needed to ascertain whether these issues are overcome with practice.

A lack of community mobility skill development before finishing school can make transition to independent adult roles difficult (Deka et al., 2016; Lubin & Feeley, 2016). Studies of driving and public transportation have indicated that autistic adults need extra time and practice but can become confident through preparation and use of global positioning system and smartphone technologies (Deka et al., 2016; Haas et al., 2020; Lubin & Feeley, 2016). Critically, independence in pedestrian, cycling, public transportation, community navigation, and living skills may be important precursors to successfully learning to drive, but practicing independence is not necessarily recognized as important or undertaken by parents (Myers et al., 2019).

The experiences of autistic people synthesized in this scoping review suggest important interrelationships among personal narratives, community occupational performance desires, community mobility and driving skills, and participation and well-being outcomes. Community mobility skills provide a bridge to community participation, but emerging qualitative evidence may also indicate links among participation patterns, motivation, and skill development in community mobility and driving. In transportation focus groups, 25% of autistic adults reported having “nowhere to go” (Lubin & Feeley, 2016). Decreased motivation can affect driving outcomes because some autistic learner drivers prefer to stay at home because of social challenges (Vindin et al., 2019), not seeing clear benefits to driving (Ross et al., 2018), lacking interest or ability to drive, and fearing driving itself (Cox et al., 2012).

Research to date has not fully considered community mobility and driving in the natural context of participation in the environment, such as having friends and activities to spark the desire to engage in activities outside of home, which, in turn, may fuel motivation for learning skills. Emerging urban planning research with autistic communities conceptualizes disability as a mismatch in human–environment interaction and proposes interventions to increase neighborhood walkability, decrease sensory overload by attention to traffic volume, and provide visual signage (Cecchini et al., 2018). More research is needed to understand how personal interests, social connections, having community places to belong and participate, and urban accessibility affect autistic adults.

However, clear evidence exists connecting community mobility and driving difficulties to poorer participation and wellness outcomes. Independent community mobility is associated with better employment and education outcomes (Zalewska et al., 2016). Autistic adults and their parents reported that reduced transportation options and lack of mobility skills after leaving school reduced social participation and increased dependence on the parents (Lubin & Feeley, 2016). Parents reported rationing their provision of mobility assistance to ensure access to essential health care, education, and work activities but sacrificing opportunities for social participation (Lubin & Feeley, 2016). Critically, adults reported that this mobility dependence contributed to depression, isolation, and fewer opportunities for community participation (Lubin & Feeley, 2016). Autistic adults indicated that learning to drive was important not just to support independent work, study, and social roles but also to feel like everyone else (Vindin et al., 2019).

The results of this study indicate that a better understanding of community mobility and driving experiences of autistic adults, from their perspective and in real-world contexts, can inform occupational therapy interventions and broader advocacy. Occupational therapy practitioners should consider the following measures:

• • Earlier, targeted interventions to build community mobility, predriving, and driving skills throughout adolescence and early adulthood in tandem with identifying opportunities for promoting independent participation in community activities

• • Interventions for developing functional social, communication, and safety skills in the community; emotional regulation skills to manage anxiety and problem solving; and assistive technology for trip planning

• • Universal urban designs that meet the needs of autistic adults by considering environmental influences such as parental concerns for community safety, pedestrian environments, traffic volume, transportation service access, and public transportation design.

Researchers should incorporate the involvement of autistic adults in inclusive research, including coproduced and participatory methodologies, to explore the following concepts:

• • Perspectives of experienced drivers, autism-related strengths that may support safe driving, and investigation of long-term safety and driving outcomes

• • Experiences of people in rural and remote environments with limited access to public transportation where the environmental demands for driving may relate more to long distances and high-speed crash avoidance

• • Development of programs to assist adolescents with development of community mobility and predriving skills to support the transition to independence.

Limitations of this review include (1) exclusion of articles not written in English, (2) exclusion of conference proceedings, and (3) experiences that were synthesized from research with a mixed representation of autism functional levels.

Research to date on the community mobility and driving experiences of autistic adults has focused mainly on learner drivers and use of simulator technology. This research has not adequately taken into account the unique challenges of autistic adults in understanding the social world and communicating in community spaces. Many autistic adults seek to participate in unique community occupations, often related to their special interests, but experience anxiety, sensory processing challenges, and difficulties with social communication, which make traversing unpredictable community environments challenging. Further research eliciting autistic voices is recommended to develop interventions for earlier, targeted supports and to inform advocacy for their community mobility and driving needs.

We sincerely thank Luke Warren (Western Sydney University Library) and Russell Thompson (statistical consultant, Western Sydney University) for their assistance with the literature search and data charting. We acknowledge the financial support of the Autism Cooperative Research Centre for Living With Autism, established and supported under the Australian government’s Cooperative Research Centres Programme. This study was part of Michelle Kersten’s doctoral dissertation.