Abstract
Community participation and the formation of social networks are crucial for a qualitative life. To this end, transportation plays an essential role. Many autistic people rely on public transportation for their mobility needs. However, research shows that it is not always easy for them to use it. The issues they face when using public bus transport have not yet been thoroughly studied. The current case study in Flanders aimed to give autistic people the opportunity to express the issues they face while using public bus transportation. A qualitative hermeneutic phenomenological study was carried out. Semistructured interviews were conducted with 17 autistic individuals. The interviews were analyzed based on the interpretative phenomenological analysis method. Three main themes emerged: creating predictability, limiting stimuli, and open and accessible communication. In addition, various coping strategies were described, such as the use of noise-canceling headphones. The results of this study may lead to a more autism-friendly public transportation environment.
Lay Abstract
Transportation plays an essential role in daily life, allowing people to participate in the community and form social relationships. Many autistic people rely on public transportation to meet their mobility needs. However, research shows that it is not always easy for them to use it. The exact issues autistic individuals face when traveling with public transportation and how public transportation can be made more autism-friendly have yet to be researched. The current study allowed autistic individuals to express themselves regarding issues they face while traveling by public bus transportation, to raise awareness for making public transportation more autism-friendly. We interviewed 17 autistic individuals about their experiences riding the bus. Three main themes emerged from the results: creating predictability, limiting stimuli, and open and accessible communication. If transport companies take initiatives related to these themes, autistic people traveling by bus can have a more pleasant experience. Participants also described coping strategies for stressful or uncomfortable situations while using public bus transportation, such as using noise-cancelling headphones or digital applications for real-time route tracking, etc. These findings may lead to a more autism-friendly public transportation.
Keywords
Introduction
Worldwide, the importance of the rights of persons with disabilities 1 is gaining attention, especially after an international agreement initiated by the UN (United Nations Convention on the Rights of Persons with Disabilities, 2007). In Belgium, initiatives (e.g. the 2020 perspective plan) were developed to improve the inclusion of people with disabilities, and autism in particular, by giving them more rights and support to become part of the community (Flemish Government, 2016). An important issue is the accessibility of public transportation (PT) for all. A previous Belgian study by Dirix et al. (2021) indicated that certain autistic individuals sometimes preferred PT to driving, while others experienced PT as uncomfortable and stressful. More insight into these difficulties is critical to making PT more accessible to autistic people.
Importance of public transport
To feel like a valued member of society, a person takes on different roles with different responsibilities (Arnett, 2007). To fulfill the expectations associated with these roles, one must actively participate in the community (Verdonschot et al., 2009). To this end, independent transportation plays an essential role as it allows a person to participate in social activities and form social relationships that are critical to the quality of life (Backman, 2010; Bigby et al., 2007; Falkmer et al., 2014). How someone travels depends on several factors, including the cost of transportation, parking availability, and proximity to PT (Fearnley et al., 2017; Lunke et al., 2021). Indeed, access to safe and efficient PT is important for independence and participation in many cases (Falkmer et al., 2015; Kenyon et al., 2002; Scott & Horner, 2008). Accessible, safe, and efficient PT can promote quality of life by positively impacting employment, social participation, and healthcare access (Davies et al., 2010). This is especially true in urban areas where PT is one of the most commonly used modes of transportation (Lunke et al., 2021).
Autism
According to the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-V), autism is a neurodiverse condition characterized by difficulties in social-communicative functioning, a preference for repetitive behavior, and sensory sensitivity (American Psychiatric Association, 2013). Recently, however, a growing number of researchers have moved away from this classic view of autism to find the neurodiversity movement (Leadbitter et al., 2021). Rather than focusing on impairments, this movement views variations in neurological development as natural and valuable (Bervoets & Hens, 2020; Nicolaidis et al., 2011). As a result, theories such as the theory of mind, executive functioning, and weak central coherence are increasingly viewed as outdated by some autism researchers. However, they remain relevant in clinical practice (Bervoets & Hens, 2020). The High Inflexible Precision of Prediction Errors in Autism (HIPPEA) theory was introduced as one of the alternatives to the established theories (Bervoets & Hens, 2020; Van de Cruys et al., 2014). It states that autistic individuals create mental models that contain overly narrow predictions. However, they are more sensitive to prediction errors than nonautistic individuals. Meaning that whenever a situation arises in which they are confronted with sensory input that does not correspond to their prior expectations, they are more prone to feelings of disorientation, stress, or anxiety. In this regard, autistic individuals may be more easily thrown off by what nonautistic people may consider as noise or irrelevant input, appearing inflexible in their ability to cope with uncertainties that naturally arise in the social world (Van de Cruys et al., 2014, 2017; Todorova et al., 2021). In Flanders, one in 150 children is diagnosed with autism, with males four times more likely than females (Autisme Vlaanderen, 2021). Similar to the general population, not all autistic individuals are identical. Consequently, the characteristics described above and others related to autism are not always present in all autistic individuals. Their overall level of functioning can differ depending on several factors such as social support, psychiatric comorbidity, context, and intellectual ability of the autistic person (Dworzynski et al., 2012).
Autism and public transport
A study in New Jersey showed that compared to nonautistic peers, fewer autistic persons obtained their driver’s licenses. They also obtained their driver’s license an average of 9.2 months later (Curry et al., 2018). Considering that autistic individuals often have difficulty obtaining a driver’s license, PT is important for their mobility and fulfilling responsibilities (Pfeiffer et al., 2021). It can also complement car use. For example, Dirix et al. (2021) showed that some autistic people who own a driver’s license use PT to avoid stressful traffic situations.
Despite its usefulness, the use of PT is not always that straightforward for autistic individuals (Falkmer et al., 2015; Feeley, 2010; Lubin & Feeley, 2016). Several potential issues make using PT challenging for them (Pfeiffer et al., 2021). Using PT involves physical and intellectual challenges ranging from reading and understanding timetables to managing the route and reaching an unfamiliar destination (Davies et al., 2010; Levinson et al., 2006). In addition, autistic individuals may experience anxiety and stress when using PT (Falkmer et al., 2015; Pfeiffer et al., 2020). They experience difficulties with unexpected situations and are rule-bound (Ross et al., 2018b), making it difficult to cope with delays or cancelations (Falkmer et al., 2015). Autistic individuals may also be hyperreactive, resulting in greater awareness of sensory stimuli (Chien et al., 2019; Grandin & Scariano, 2005). This hyperreactivity sometimes makes it more difficult to process stimuli when it is too crowded at a bus stop or in a vehicle (Falkmer et al., 2015). Proximity to PT also plays a role in its use in autistic individuals (Wasfi et al., 2017). A German study has shown that PT is well organized in large cities, while in rural areas, infrastructure provision can be significantly improved (Sörensen et al., 2021). Logically, the lack of PT nearby may be why an autistic person is less likely to use it even though they want to (Pfeiffer et al., 2021; Wasfi et al., 2017). The absence of autism awareness among PT drivers is also one of the challenges faced by autistic people (Falkmer et al., 2004). There are no data on the use of PT among autistic individuals in Belgium. Nevertheless, several studies have attempted to determine the extent of the use of PT by autistic individuals. Graetz (2010) surveyed caregivers of autistic individuals living in the United States and found that only 31% used PT multiple times per week. These findings are consistent with a study in the United States by Farley et al. (2009), which found that 27% of the autistic population used PT regularly. Autistic individuals also preferred to travel with PT when accompanied by other family members or people they trusted (Falkmer et al., 2001; Farley et al., 2009). Other studies found that autistic individuals often prefer to be transported by people close to them (Feeley, 2010; Lindsay, 2017; Lubin & Feeley, 2016).
This was confirmed in a recent study by Dirix et al. (2021), which examined Belgian autistic drivers’ experiences with the road environment and infrastructure elements. Participants in this study described riding as a passenger as a coping strategy to avoid having to drive themselves.
Public transport in Belgium and Flanders
Belgium is a small European country with a population of about 11.5 million inhabitants (Statbel, 2021). It is divided into three regions: Flanders, Wallonia, and Brussels-Capital (Statbel, 2020). Each region’s government subsidizes its own PT company. In addition, there is one railroad company, the SNCB (National Railway Company of Belgium), which is funded at the national level. Private PT does not exist in Belgium (FOD Mobiliteit en Vervoer, n.d.). Those wishing to use PT in Flanders must rely upon “De Lijn.” Their services consist of fixed trajectories and stops with a prior known timetable (Vlaanderen, n.d.). De Lijn wants to play an inclusive role with accessibility for all (De Lijn, n.d.-a). This includes, for example, displaying more information while driving, adapting platforms for people with disabilities, and actively engaging in accessibility policies (De Lijn, n.d.-b, n.d.-c). This study will focus only on public bus transportation (PBT), as it is the most widely used PT mode in Flanders (De Lijn, 2021).
Aims of the study
Despite increasing attention to inclusive transportation, research on PBT experiences in autistic individuals is sparse. A systematic review on PT and school buses shows that most studies focus on transportation use, cost, access, and PT safety (Lindsay, 2017). The same review also shows that most studies reflect parents’ perceptions of autistic individuals, while few studies focus on the experiences of autistic individuals themselves (Lindsay, 2017). Falkmer et al. (2001) revealed a lack of studies on the experiences and opinions of autistic individuals, while it is crucial to let this target group speak for themselves. Moreover, information about the challenges and needs in PT is insufficiently available. This could impact accessibility policies, which are essential to successfully meeting autistic individuals’ needs when using PT (Lubin & Feeley, 2016). By sharing their experiences with the outside world, autistic individuals are given the opportunity to improve the safety of their journeys and increase their opportunities to participate in daily life (Nicolaidis et al., 2011; Pellicano & Stears, 2011). In addition, a recent study by Leadbitter et al. (2021) argues that all stakeholders need to understand autistic people’s views and neurodiversity as a movement. In doing so, researchers need to move away from the traditional way of thinking about autism and pay more attention to the experiences of autistic people. This study gives autistic people the opportunity to express their issues while traveling with PBT by asking about their opinions and experiences related to traveling with PBT.
Method
Epistemological orientation
This study employed a subtype of phenomenological research, namely, hermeneutic phenomenology (HP). Phenomenological research is described as the study of experiences (Lindseth & Norberg, 2004). The method focuses on a detailed exploration of individuals’ personal opinions and experiences (Smith, 2015). Hermeneutics is the science of interpretation that assumes that the meaning of words is never stable or definitive. The meaning and significance of human activities are examined from the participant’s perspective (Howitt, 2010). Thus, HP seeks to better understand phenomena by asking how they are experienced by a person living or going through them (van Manen, 2016). The data collected with the semistructured interviews were processed based on interpretative phenomenological analysis (IPA). Its main advantage is that it allows the researchers to constantly interact between what is said and what is meant (Lindseth & Norberg, 2004). Howard et al. (2019) recently found that HP is appropriate for capturing the experiences of autistic individuals.
Participants and recruitment
Convenience and criterion sampling allowed for a purposive sample of autistic individuals with prior PT user experience. The following inclusion criteria were set:
Age between 18 and 34 years;
Have an autism diagnosis;
Can take PT independently without assistance;
Living in Flanders, Belgium;
Has no additional physical or intellectual disability.
To recruit autistic persons, a poster was created and distributed via social media. Autisme Limburg, Vlaamse Liga Autisme, Ergotherapie Vlaanderen, Toerisme voor Autisme, 2 and some smaller organizations also shared this poster with their members.
Table 1 provides a schematic overview of the included participants.
Demographics.
Semistructured interview format
The questions in the current study were designed based on a pre-prepared topic list (e.g. use of PT, bus stop, schedule, etc.) and were intended to create structure and predictability in the interview. The topic list was developed based on the available literature and practical experience (see Appendix 1, page 27). In addition, a photo guide was compiled to provide a clearer and better idea of the situation for each question.
Initially, two pilot interviews were conducted to ensure that all questions were clear. The first pilot interview was conducted with a nonautistic person, and the second with an autistic person. This second interview was important to assess whether the semistructured interview was appropriate for autistic individuals and to emphasize the importance of clear communication without suggestive questions.
Procedure
In preparation for the interview, autistic participants were given the topic list for the semistructured interview to create predictability. This approach was adopted after consultation with Autisme Centraal (n.d.). 2 In addition, the autistic participants were asked to determine the interview location to ensure a safe and trusting atmosphere. If the participant did not select a location, the researcher chose a quiet environment without distractions.
Data were collected between November 2018 and March 2019. The interview pace was adjusted individually for each participant to allow sufficient time for understanding and answering the questions. All interviews were recorded. They were conducted and analyzed by an occupational therapist. Two research team members, a psychologist/occupational therapist, and a physical therapist reviewed these analyses. Most research team members were part of a research group on transportation with a background in behavioral studies. They conducted the analyses from an occupational therapy perspective, focusing on the person and meaningful activities (Reitz & Scaffa, 2020). In this regard, transportation is an important activity of daily living that allows a person to fully participate in society (Falkmer et al., 2014). Given that IPA is based on the participants’ lived experiences (Lindseth & Norberg, 2004), it was decided not to use existing models or frameworks in transportation. Finally, no external parties or clients were involved in this study, so there was no external involvement while conducting the study.
Ethical considerations
The Social and Societal Ethics Committee (SMEC) of Hasselt University approved this study (reference: REC/SMEC/VRAI/189/109). Before the interview, each participant signed an informed consent form that described their rights and the purpose and outline of the study procedure.
Data analysis and quality criteria
Data analysis
After data collection, each participant’s information was written ad verbatim. In addition, participants’ nonverbal responses were also included in the transcript if they were perceived as contributing. Further familiarization with the data was achieved by reading the transcripts and listening to the tape recordings again (Baarda et al., 2013; Howitt, 2010). Accordingly, participants’ self-interpreted experiences were assessed from multiple perspectives to develop a naïve understanding. Subsequently, this naive understanding was decomposed into themes representing similar content. Subsequently, themes were clustered into “superordinate themes.” This familiarization process was repeated until the data from each transcript could be assigned to the correct theme (Baarda et al., 2013). In this study, no new themes emerged after analyzing 15 interviews; the last two interviews then confirmed the current study’s findings.
Quality criteria
To enhance the credibility and validity of the study (Wood et al., 2020), research memos taken during the interviews served to supplement the audit trail (i.e. a qualitative strategy to substantiate trustworthiness by keeping a logbook of all theoretical, methodological, and analytical decisions) (Rodgers & Cowles, 1993). Citations were added to the results section to help readers corroborate the findings (Cambon et al., 2012; Korstjens & Moser, 2017). Dependability (i.e. the extent to which someone not involved in the study can verify, criticize, and reproduce the research process) (Moon et al., 2016) was accounted for by doing a member check where participants verified the findings. The results were also checked with an expert (i.e. the accessibility coordinator of “De Lijn”). The expert’s input helped not only to confirm the results but also to further translate these results into policy recommendations. Finally, systematic work during data analysis was encouraged by using the computer program NVivo (dependability).
Community involvement
We consulted with patient organizations to create the interview guide (i.e. Autisme Limburg, Vlaamse Liga Autisme, Ergotherapie Vlaanderen, Toerisme voor Autisme, 2 and some smaller organizations), and to collect more information about autism and PT in Flanders. Subsequently, these organizations also actively helped to recruit participants. The participants were asked to verify the findings and interpretations after their interview.
Results
Findings
Three main themes emerged that were considered important in making bus travel more comfortable for autistic people (see Table 2 and Figure 1): creating predictability, limiting stimuli, and open and accessible communication. Almost all participants made notice of these three main themes. The interpretive phenomenological analysis revealed that most participants did not express their emotions directly but rather cited experiences instead. The themes were derived from these experiences. It was suggested that when these themes were not addressed during the journey, participants experienced stress, anxiety, and anger. While some experiences frequently recurred among participants, other experiences were less unanimously shared. Interestingly, a few participants indicated that more autism-friendly PBT would improve accessibility for all travelers, not just autistic individuals. A more detailed overview concerning which themes the participants mentioned can be consulted in Appendix 2 (page 28).
Themes and subthemes derived from analysis.

Schematic overview of themes and subthemes.
Theme 1: predictability
Three subthemes were identified that could contribute to the creation of predictability: (1) overview throughout the journey, (2) consistency, and (3) accuracy of information. If these criteria were not met, this often led to experiences of frustration, stress, anger, and anxiety by the participants I find that it is less predictable when they (i.e. the buses) arrive. Sometimes there is a traffic jam, or sometimes there is no traffic jam at all, and not many people get on, so in that case, it goes faster. . . then it would be convenient if I could check where we are at any time. . . . As I said, that’s actually the main thing that stresses me out; now, with the app, it’s already better, but yeah, still, so yeah. (Female, 30 years)
1. Overview of the journey
Participants indicated that it is important to maintain a mental overview throughout the journey. This overview provides clarity, which in turn can lead to predictability. The subtheme “overview of the journey” refers to four different areas: (1) the bus stop, (2) the passenger seats, (3) the ticketing system, and (4) the information boards at the bus stop.
Bus stop
Participants indicated that the name signs at the bus stop allowed them to keep track of their rides and helped them decide when to get off the bus. However, many participants indicated that they had difficulty reading these signs due to the font size. Increasing the font size on these signs so they are readable while riding would be an improvement. Some participants also suggested illuminating the name signs so they are visible at all times of the day.
I can get annoyed about that, that the name of the stop is written so small, then you don’t quite know which specific stop it is. (Female, 25 years)
Many bus shelters in Flanders are equipped with large advertising boards that take up the entire sidewall of the stop. This restricts the road view, which in turn can cause problems because the person who wants to take the bus must alert the bus driver by raising a hand for the bus to stop. Several participants indicated that the limited visibility is experienced as stressful. Many bus stops shelters are further from the street, so participants feel they are not visible enough to the bus driver.
I usually don’t find the shelters very convenient because I’m really afraid they will pass me. Some shelters are really out of sight, and then I sometimes find it difficult to sit there and be reassured of . . . (Female, 19 years)
Bus seats
Participants indicated that they carefully chose where to sit on the bus. Most participants preferred to sit near the doors. Some participants also indicated that they preferred to sit in the front to keep track of the road, to be able to rely on the bus driver immediately if needed, and to sit near the front doors.
Yes, to get as quickly as possible from where I need to be so that I can get out quickly, and that I don’t have to pass too many people and squeeze in between them. (Male, age 18)
Depending on how crowded the bus is, participants preferred to sit by the window or on elevated seats because it gives them a clear overview of the road, and they better know where they are and when to get off. However, sometimes this overview is obstructed by advertising stickers on the bus windows, which some participants considered very annoying. Unfortunately, all windows are often stickered, so participants hardly have a choice of suitable seats.
I don’t find that very pleasant, because then I can’t see well and especially when I don’t know the ride I’m riding then. That stresses me out. (Male, 33 years)
Ticketing system
The organization of the ticket system often causes stress. Since 2015, all PT companies in Belgium have introduced a new ticketing system called “MOBIB.” This is an electronic chip card that can be used on all PT modes. Previously, a separate ticket had to be purchased for each mode of transport. Most participants indicated that they found this approach more convenient and less stressful. Some participants stated that it is annoying that one cannot see the expiration date on the MOBIB card. It only shows if the card is still valid when it is scanned while boarding. If the scanner does not work, one cannot verify the ticket and must either disembark again, purchase another type of ticket, or hope that the ticket is still valid and continue the trip as planned. This issue clearly shows how the principle of predictability sometimes gets compromised, resulting in lower confidence levels, stress, and anxiety.
They are constantly changing the system, I have a bus pass, and you have to scan it, but often the scanners don’t work, and then you are just standing in front of them . . . With some of them (i.e., bus drivers), you just have to show it, and with others, you really have to scan it, and there is no common thread, and that makes it sometimes challenging and stressful for me. (Male, 25 years)
Information boards at the bus stop
Participants’ experiences varied greatly depending on what type of information board was available to consult the timetable. Several participants indicated that a map with an overview of the entire bus route is helpful. This overview can be found at certain, but not all, stops and in the “De Lijn” application. This map must provide a correct outline. About half of the participants also stated that they rely on Google Streetview to prepare or further plan their trip.
I check the app of De Lijn to know the timing, and then I check; yes, if I don’t know the stops or something, I check via Google Maps. (Female, 29 years)
2. Consistency
The importance of consistency was mentioned by participants in relation to timetables and the naming of bus stops or lines.
Timetables
Several participants mentioned that the different formats in which timetables are offered (e.g. the app “De Lijn,” the website, the bus stop, etc.) do not always correspond. This discrepancy creates a sense of distrust. Therefore, participants indicated that they checked the timetable several times to increase their trust. Even though most participants found the app accessible, it is notable that many were not aware of all the possibilities in the application. For example, there was confusion among participants about the real-time bus route information displayed in the app. Some participants indicated that developing a manual could provide a solution here. The aim should be to optimize the app’s operation, and the information provided should be consistent and give confidence to users.
Yes, I think so, now, I did have occasions where the app thought that I was on a different bus because one bus had overtaken the other. That was kind of annoying, but in the end, yeah . . . (Female, 30 years)
Names of bus stops and lines
Some participants indicated that the naming of stops or lines is occasionally confusing. For example, sometimes the Central Station is the terminus of a particular bus line. In contrast, at other times, the terminus is already a few stops before the Central Station or at another location. Nevertheless, all buses use the same number. This confusion causes participants to make additional checks at their stop, for example, by looking at the full overview of the bus route.
Yeah, if just the name of the destination in the app would match the name on the stop sign. . . or if they just know 48a is that way, 48b is that way, and then those names may still be different. (Male, 19 years)
What participants experienced as positive in terms of consistency was that line numbers are always strongly visually represented. Each bus route in Flanders has its own color on the bus stop sign, the timetable, the app, and on the newer buses. De Lijn also tries to keep the overlap between these colors in one area to a minimum to create more consistency (e.g. the color orange is only used once in a region).
What I also think is clear are those colors of the line number, I think it always is, that those colors match the colors on the stop sign. That’s very visually clear . . . that’s a positive sign. (Male, 19 years)
3. Information accuracy
Most participants indicated that information is not always accurate. They mentioned that using clear catchphrases in announcements or extended presentation time of certain information on the bus display could be possible ways to improve message transfer.
The timetables are pretty clear, except that you, often for the special services, which are the services with an extra letter to the number of the line, that the accompanying description is only clear if you know the route. Because it is often like this: ‘route limited to that stop,’ then you have to know exactly whether that stop is before or after the stop where you have to get off. Then you have to look it up, and that’s irritating. It could be clearer. (Female, 25 years)
Furthermore, interviewees indicated that it is often not clearly shown at the bus stop, in “De Lijn” app, or on the website when a certain stop is not served. Some participants also felt that such a message alone is insufficient and that additional information is needed to address the problem (e.g. What is the nearest stop being served? How long will the stop not be served?).
I didn’t know the bus was making a detour, and a gentleman asked me, “does the bus still makes a detour?” I’m like, “yeah, I don’t know that.” There was no indication anywhere on the bus stop if the bus made a detour or not, so it was also a bit of a guess. (Female, 25 years)
A more recent way to provide real-time information to passengers is through electronic timetable boards at bus stops. Unfortunately, not every bus stop is equipped with these boards. Usually, they are only found at major train stations and near tourist attractions. Although many stops are not equipped with such boards, most participants still reported positive experiences with them.
Sometimes I find it more difficult when there are no such screens because then I have less confidence; I always think or yes I am never sure that I have not missed the bus then and if I am at the right stop and so on. (Female, 30 years)
Nevertheless, these positive experiences only applied under certain conditions: the electronic boards that display the timetable must be adequately maintained and updated to provide accurate information to travelers at all times. However, this is not always the case. Some participants stated that the boards do not always work or that the information is not updated, which leads to distrust. Uncertainty also arises when, in some cases, the supposedly arrived bus disappears on the electronic board while not yet arrived.
I find it annoying sometimes that the minutes are not always right (. . .), especially if it is something like that on a route that I do not know and I want to see where we are and where I have to get off and when I have to call, then I find that difficult because I never have the certainty then. (Female, 19 years)
Theme 2: limiting sensory stimuli
Most participants clearly described hypersensitivity to sensory stimuli. They stated that it takes a lot of energy to process all the stimuli they encounter during a bus ride, resulting in fatigue. A trip becomes even more exhausting if one has to sit on the bus for a long time or if the connections between different bus lines do not align. The majority indicated that it would be more comfortable if the connections between buses and trains were shorter. Now the journey often takes a long time, creating many sensory stimuli that could have been avoided. Furthermore, crowding is also a stressful and exhausting factor when participants use PT. The majority of participants indicated that they found it difficult to cope with crowding because it made them feel oppressed, stressed, and angry. Minor adjustments could remedy this. For example, the PT company can ensure that timetables are visible from different perspectives, so travelers do not have to face the crowd to check them. It is considered positive if a bus stop has a shelter to sit in because it protects travelers from unnecessary stimuli. However, some autistic people quickly became overstimulated when others are in the shelter.
I never sit in that shelter, because you know, people are standing there or there are people next to you who can talk to you or get too close, or in your personal space. . . in terms of touching and so on. That triggers me, and yeah. . . therefore, I am always standing outside. (Male, 18 years)
Few autistic individuals indicated that it would be more convenient if larger buses were used at peak times. An indication of bus occupancy would also be helpful and have a calming effect. In addition, some participants mentioned that they find it more comfortable to ride new vehicles than older buses because they are less noisy.
It depends again on where I ride the bus. . . Sometimes when it are old buses but sometimes also, if I’m lucky, then it are new buses. If it’s an old bus, then the sounds of the people and the bus itself bother me more. If it’s a new bus, then I notice this less quickly or something like that. (Male, 33 years)
Some participants specifically indicated that they purposely looked for a single seat or put their backpack on the seat next to them to prevent anyone from sitting next to them. If someone did sit next to them, participants often used coping strategies to avoid stimuli as much as possible (e.g. noise-canceling headphones). In this regard, most participants reported listening to music or using noise-canceling headphones or earplugs while traveling. When they fail to use these strategies, it can cause sensory overload and stress. Finally, regular use of the bus or other PT modes creates a certain routine that is helpful in better processing sensory stimuli during the trip.
I also recently had custom earplugs made, and I intend to start using those more because sometimes I do, then I’m sitting there with one finger in my ear like that . . . But that’s something I should use, not just on the bus but in multiple situations. (Female, 29 years)
Theme 3: open and accessible communication
Many respondents indicated that there is little communication with the bus driver. When participants do not know where to get off, it can cause stress because they often feel they are not allowed to talk to the driver. When a problem arises during the ride (e.g. not knowing where they are), most approach the bus driver, but communication with the driver does not always go smoothly. In addition, participants indicated they mainly asked to be warned to get off at the correct stop.
You always have to keep an eye on where you are, and on long distances, especially if you have never taken the bus, the only thing you can rely on is the bus driver. You can ask the driver, ‘will you tell me when to get off?,’ but otherwise, you know nothing. So, actually, the most idiotic thing is the advertising of De Lijn. I don’t even understand, they are so, so wrong, they say ‘stress-free’ on the bus, but if you don’t know where you are, you can’t be stress-free, you can’t be calm on the bus, alright, because you have to monitor where you are constantly . . . (Male, 24 years)
Some participants also indicated that there used to be more communication with other PT staff (e.g. cashier, customer service staff, etc.), but that this has become less frequent in recent years due to digitalization (e.g. mobile apps, the disappearance of paper tickets and membership subscriptions, etc.). Given the low level of contact, participants indicated that it is not always easy for them to approach an employee. When they have no choice but to approach someone, it can cause stress and anxiety.
And then it’s, alright, I mean, it used to be one of those paper cards, and then that’s changed, and now it’s one of those cards that makes me talk to others a lot less. Sometimes you have to, but yeah, not that often. (Male, 33 years)
Discussion
This study examined the PBT-related experiences of autistic individuals, which were somewhat mixed. This corresponds to Falkmer et al. (2015), who also found mixed viewpoints of autistic individuals regarding PT usage. These conflicting opinions within the sample can be explained by the fact that autism is a spectrum condition that can manifest itself differently (Volkmar et al., 2009). Nevertheless, this is not a problem, as the primary goal of HP and IPA is not to generalize but rather to describe participants’ experiences in-depth (Ramsook, 2018). Despite varying experiences, all participants felt that accessible PBT would allow them to be part of the community, and they were willing to use PBT. This corroborates previous research on the link between PT use and social inclusion (Falkmer et al., 2015; Feeley, 2010; Kenyon et al., 2002; Lubin & Deka, 2012; Scott & Horner, 2008). A recent study by Pfeiffer et al. (2021) examined the barriers and facilitators to PT use in people with intellectual and developmental conditions (including autism) and aligns with the current study’s findings. Although not every autistic participant in Pfeiffer’s study felt comfortable taking the bus, PT is still a regularly used transport mode. This makes the challenge to create autism-friendly PT even more important, which echoes in the current study, previous literature, and practice (Falkmer et al., 2004, 2015; Pfeiffer et al., 2021).
Discussion of the different themes
A lack of predictability was often seen as a barrier to PBT use. Therefore, the first theme derived is the need for predictability, which has been previously associated with autism (Goris et al., 2020; Ogawa & Watanabe, 2011; Trapp et al., 2015). However, the results indicate that there may be much room for improvement in Flanders. For example, most participants relied on the bus schedule during their bus trips. Yet, buses were often late or did not show up, causing stress, anger, and frustration among the target group. The results showed that the most problematic issues for the current study’s participants were: no up-to-date timetable, unclear bus number, inconsistencies in the planned route, unclear visible timetable, inconsistencies in the displayed schedule, and lengthy transfers. This is in line with Pfeiffer et al. (2021), who found that timetable planning, navigation, anxiety, and waiting time are often barriers for autistic individuals to use PT. In terms of coping strategies, participants in both this study and Pfeiffer et al.’s (2021) study mentioned preparing the bus route in advance, asking the bus driver to warn them, and personally checking each stop on the bus route to ensure where they could get off and press the stop signal button in time. Predictability reduces tension and allows one to remain independent and flexible (Degrieck, 2009). However, an important prerequisite is that the information provided is clear and accurate, which is also in line with a previous study by Falkmer et al. (2015).
The results revealed that many participants are sensitive to sensory overload while traveling by bus, which constitutes our second theme. Moreover, the current study shows that crowded buses or bus stops may create an oppressive and tense feeling. Indeed, many autistic individuals face hyperreactivity, that is, when incoming sensory stimuli are experienced overly strongly (Chien et al., 2019; Grandin & Scariano, 2005). Participants’ coping strategies include noise-reducing headphones, avoiding crowded buses, or deliberately choosing a specific seat to avoid someone sitting next to them. This is confirmed by previous research on autistic people’s use of PT, which also found that crowded situations are experienced as oppressive and tense (Falkmer et al., 2015; Lubin & Feeley, 2016). The use of noise-reducing headphones and avoidance of crowded places are coping strategies used by autistic individuals that have also been found in studies outside the field of transportation (Ikuta et al., 2016; Kerns et al., 2016). Results showed that routine was important for most participants because it made the bus ride more pleasant. This was also found in a study by Lubin and Feeley (2016), in which autistic individuals and their caregivers expressed the need for a reliable and consistent PT service. A more recent study by Pfeiffer et al. (2021) also found that one of the main disadvantages of using PT for autistic individuals is its crowdedness. Interconnectivity (i.e. better coordination between and with other forms of PT) was also raised as an important issue, which is supported by the available literature (Falkmer et al., 2004; Falkmer & Gregersen, 2002; Pfeiffer et al., 2021).
As a third theme, open and accessible communication is considered important by participants when taking PBT. Clear catchphrases when notifying travelers make participants feel safer and less stressed. Consistent use of such catchphrases can create a routine and a sense of security, which makes riding the bus more enjoyable. These findings align with those of Lubin and Feeley (2016), who used focus groups to identify transportation issues for autistic individuals. They found that traveling an unfamiliar route was not considered a significant barrier by most participants as long as they could adequately prepare and the information they received was accurate. Trip-related information also had to be accurate and up-to-date. Furthermore, it is not only autistic people who benefit from open and accessible communication. Other travelers will also have a more pleasant travel experience. Some participants in the present study also indicated this. These findings align with a study by Galetzka et al. (2008) on transparent communication at the Dutch railroads. The study showed that transparency and clarity in communication are considered very important, but this was often not sufficiently present, leading to frustration and confusion among passengers and staff.
Limitations and suggestions for future research
First, semistructured interviews can steer the conversation in a certain direction. Topics and accompanying questions were predetermined to ensure that all participants were asked about the same topics, allowing for an in-depth understanding of a topic and comparisons (Kallio et al., 2016). However, this may have resulted in participants sticking to the given topics during the interview instead of spontaneously naming new topics. Nevertheless, the interviewer always addressed the participants’ responses and allowed them to discuss additional topics, and participants were provided with the topic list prior to the interviews. Second, autistic individuals may have difficulties in answering open-ended questions (Frith & Happé, 1994). Our brain constantly predicts what might happen based on the environment, previously acquired knowledge, etc. If that prediction turns out not to be correct, a person learns from it and adjusts their response (Friston et al., 2014). However, autistic individuals can experience difficulties with violations of their expectations (Van de Cruys et al., 2014). Therefore, it may be more difficult for autistic individuals to respond to open-ended questions, as they leave the expectation for an answer implicit, which is at odds with their preference for explicit expectations, minimizing the risk of prediction errors. Although it is likely that some interviewees also experienced problems with the open-ended questions, attempts were made to avoid these problems, for example, by using accompanying photographs. These photographs were intended to help autistic individuals visualize specific situations. Using photographs to clarify the question can add value by supporting the thinking pattern and making abstract concepts more concrete (Rao & Gagie, 2006). In a recent study by Dirix et al. (2021), accompanying photographs were also used to clarify questions when interviewing autistic individuals, which participants found inspiring. In addition to the photographs, pilot interviews were conducted to ensure that the questions were clear. Third, the current study identified reasons for using PBT in autistic individuals with recent PBT experience. However, reasons for not using PBT were not explored in this sample. The literature on transportation shows that many autistic individuals prefer to rely on people from their environment (Farley et al., 2009; Lindsay, 2017; Lubin & Feeley, 2016). Therefore, a study including non-PBT users would be useful. Fourth, using purposive and convenience sampling may have resulted in a sample that is not fully representative of the general autistic population. However, this is not the primary aim of the IPA method. Consequently, this study identified participants’ experiences on which follow-up research can be based. In addition, other autistic individuals may benefit from the coping strategies or recommendations of the participants in the current study. Fifth, it was more difficult for participants to name tangible emotions during the interviews. They often translated these into situations without specifically naming their underlying feelings. As a result, we had to slightly deviate from the analysis method in which we identified the experiences that may have impacted the most common underlying emotions (anxiety, stress, and anger). Difficulties in identifying and describing emotions (i.e. alexithymia) are closely linked to autism and may explain why participants did so to a lesser extent during the interview (Daou, 2014; Ross et al., 2018a). Sixth, we did not check for comorbidity. Previous research shows high comorbidity between autism and other conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD) and social anxiety (Bögels & Perrin, 2011). These comorbidities may have influenced the results of this study. For example, participants with anxiety might perceive taking PBT as more negative. It is advisable to ask participants about comorbidities in future studies. Seventh, young adults aged 18–40 years old participated in the current study. This is consistent with most studies regarding PT and autism, which commonly include younger adults up to 30–35 years of age (Haas et al., 2020; Pfeiffer et al., 2021). However, it is unclear to what extent the results can be generalized to other age groups, as age may play a role in individual experiences (Daher, 2009). Follow-up studies with different age groups are recommended. Eighth, this study was conducted in a Flemish context. Therefore, the applicability of the results to persons and/or groups in other countries and regions is unclear as there may be cultural and social differences (Sasidharan et al., 2005; Linnenbrink-Garcia et al., 2012). Again, future research is recommended. Importantly, the interview guide and accompanying pictures must match the setting and culture. Finally, due to the rural context of the study, the current study focused only on PBT and not on other PT modes. However, it is very likely that some of the current study’s findings may also apply to other modes of PT. For example: removing large advertisement boards that block visibility, real-time information, etc. This is also supported by previous research by Lubin and Deka (2012), Haas et al. (2020), and Pfeiffer et al. (2021), who studied the role of PT for autistic people and their experiences with PT. In their studies, they found similarities between the different modes of transportation. In addition, the current study did not focus on practices that are already common in other forms of public transportation, which may also alleviate some of the issues with PBT that the current study’s participants highlighted. However, certain things may be extended to PBT, such as providing real-time information on vehicle information boards (Pfeiffer et al., 2021). Further research is recommended to ensure that the current study’s results apply to other PT modes and to examine practices of other modes that can be extended to PBT.
Practical recommendations
Autistic participants in this study expressed both positive and negative aspects related to the use of PBT. The current study’s findings, combined with other studies’ findings, may help PBT companies develop policy strategies to further improve PBT for autistic individuals, which would also benefit the general population. Robertson and Simmons (2013) supported this assumption by noting that autistic traits, particularly differences in sensory processing, are also continuously and well distributed in the general population. Variations in neurological functioning are a natural part of the human population and are, therefore, not necessarily pathological (Leadbitter et al., 2021). The principle of “universal design” (e.g. providing all people the possibility to access public systems at the same level of service) is important in this context (Grisé et al., 2019). This study’s findings could aid policymakers in developing such universal design infrastructure/facilities, as it takes the first step in this direction. By exploring the experiences of autistic people, it lays the groundwork for autism-friendly PBT.
Based on the results of the current study, more specific recommendations for PBT improvement can be formulated in three main areas: (1) communication, (2) physical adjustments, and (3) employee education. However, we would like to reiterate that this is only one of the first studies describing autistic people’s experiences with PBT. The recommendations are based on the information provided by the participants in the current study. However, it cannot be assumed that this is true for the entire autism community; follow-up studies are needed to confirm this. The first and most important recommendation is to simplify using PBT and how the information is displayed in terms of communication. For example, consistency in displaying the timetable (e.g. a uniform layout) would build more confidence among autistic people. Second, mentioning all stops on a dynamic schedule at the bus stop or on the bus increases predictability. Another example is increasing the display time of the timetable, especially when the bus is delayed, by adding a “+5 min” after the bus line on the timetable that remains visible. Third, besides better and clearer communication, the PT company can also make physical changes. Participants mentioned that crowded buses or bus stops could trigger an oppressive feeling and cause stress, mainly because of limited visibility. Some suggestions were made to reduce these negative effects. For example, displaying the timetable outside the bus stop so that it can be seen from different angles. Another suggestion was to communicate about bus occupancy. This would be helpful, as autistic persons could select a less crowded bus. Fourth, removing billboards at the bus stop would improve visibility, allowing for a timely notice to the bus driver when the bus is approaching. Fifth, the PT employees should have sufficient knowledge of how to adapt to the needs of autistic people. Therefore, PT companies could offer their employees training on communicating with autistic people. Sixth, improving connections between buses and other transportation modes would reduce autistic people’s stress when using PBT. Finally, the current study’s findings are not only relevant to PBT companies. Participants also described various coping strategies while riding the bus. These coping tips may be relevant to the autistic community and their environment if they feel reluctant to use PBT.
Conclusion
This study was one of the first to examine how autistic individuals experience PBT. It is important to understand what obstacles they face and how these can be addressed and improved. In general, three main conclusions can be drawn. First, it is crucial for autistic individuals that predictability is created while traveling with PT. This implies the provision of overview throughout the journey, consistency, and accurate information. When predictability is limited, autistic passengers use coping strategies such as preparing the bus route in advance and using the stop signal in a timely manner. Second, it may be important to limit sensory overload, especially when the bus is crowded. The coping strategies mentioned included selecting a specific seat and using noise-cancelling headphones. Finally, participants indicated that accurate information is critical to an enjoyable public bus ride. When accurate information is communicated clearly and structured, they feel safer and enjoy the bus ride more. Further studies conducted in other countries and/or with other age groups are needed to further validate these findings. This study may help PBT companies develop universal infrastructure/facilities that allow all people, with or without disabilities, to access PT at the same level of service, creating a more autism-friendly environment. The results can also guide policymakers, again aiming for a more inclusive and autism-friendly PBT.
Footnotes
Appendix 1
Appendix 2
Acknowledgements
The authors would like to thank all the participants who participated in this study.
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 publication was supported by the NPRP award (grant no. NPRP11S-1228-170143) from the Qatar National Research Fund (a member of Qatar Foundation). The statements made herein are solely the responsibility of the authors.
Informed consent
All participants received and signed an informed consent before participating in this study.
