Recognizing Past and Present Experiences: Toward a Person-Oriented and Trauma-Informed Approach to Autism Research

Acknowledgment of the lived world: Past and present adverse events

The principle of acknowledgment of lived world calls for attention to external social and cultural factors and contexts that might influence the research process and experience such as beliefs, norms, and values of both participants and researchers as well as the effects of significant others in their families and communities (Cascio et al. 2020). Thus, it is important to consider the impact of past and present experiences on research participants and acknowledge that autistic people may be hesitant to participate in research given the harmful and cumulative impacts of stigma, stereotypes, and social exclusion experienced in their lives as well as in research and clinical settings (Cascio et al. 2020). Further, special attention and efforts should be devoted to understanding the impact of such experiences on autistic individuals as research participants as well as their influences on the whole research encounter.

Attending to a person’s physical and emotional safety and ensuring the protection of research participants from re-harm is essential for implementing the trauma-informed framework in research (Nonomura et al. 2020; Carello and Butler 2015). Past experiences of harm, violence, and victimization as well as the absence of a safe environment may trigger trauma symptoms and reactions and increase risk for re-traumatization in research (Elliott et al. 2005; Goodwin and Tiderington 2022). Therefore, in case of autism, it is crucial to pay attention to the physical environment of the study due to sensory and communicative difficulties as well as social anxiety which may make the environment potentially more distressing for autistic participants (Cascio, Weiss, and Racine 2020). Enacting the principle of safety, therefore, includes being sensitive to sensory impacts on autistic participants and choosing and organizing, in collaboration with them, research environments and places where sensory burdens of the research setting can be minimized (Cascio et al. 2020). Meeting in locations where participants feel comfortable and secure is essential for promoting physical and psychological safety (Butler, Critelli, and Rinfrette 2011; Goodwin and Tiderington 2022) and reducing the risk for re-traumatization (Quijada et al. 2021). Participants in the first author’s study, for instance, had the ability to decide where and when to meet with the researcher or to opt for online participation (phone, Zoom, etc.).

The third author, who is an autistic person, can confirm, through participation in various groups and activities, that the lack of a suitable environment negatively affects the ability of many autistic individuals to participate effectively in conversations with others; this will almost certainly also affect the quality of research data gained from such individuals. By providing a research environment which is tailored to the sensory sensitivities of autistic people, researchers can avoid this potentially adverse impact on data collection and ensure a more enjoyable and less potentially traumatic experience for research participants. Even after choosing a location, it is vital to assess the impact of the external environment on participants. Flexibility is key, as participants may feel stressed or overwhelmed by their surroundings. For instance, during an interview that the first author conducted with an autistic person at a café, the participant felt uncomfortable due to noise and chose to move to a quieter spot. Researchers must anticipate and respond to participants’ needs, being prepared to change locations when necessary.

Furthermore, to ensure that autistic research participants have a positive, comfortable, and non-harmful experience, researchers must pay considerable attention to practical aspects. Drawing on personal experience as a research participant in multiple projects, the third author of this paper underscores the importance of such considerations. For example, researchers should provide precise instructions regarding the meeting’s time and location, including reminders, a Google Maps link, and parking details if necessary. Additionally, it is essential to present a clear agenda outlining the research session’s activities and format (e.g., one-on-one meetings, group meetings, or sessions with multiple researchers). Furthermore, specifying the availability and duration of breaks, including the number of breaks within the session, is crucial. Although these practical issues might seem trivial to researchers accustomed to working with neurotypical research participants, they are significant for many autistic people. Moreover, taking care to address these considerations can substantially enhance the participants’ ability to engage effectively and comfortably in the research.

Talking about sensitive issues during participation in research can in and of itself create physical or emotional distress, and even have lasting and harmful effects on participants (Dempsey et al. 2016). Some participants may find it uncomfortable sharing stories about traumatic experiences and researchers must be alert to the possibility that this can lead to re-traumatization (Goodwin and Tiderington 2022). Therefore, TIA emphasizes recognizing signs of distress and symptoms of trauma in those involved in the research study (participants and researchers) (Quijada et al. 2021; SAMHSA 2014), an ethical practice defined by some as fundamental in human research, especially research which deals with sensitive topics (Dempsey et al. 2016; Isobel 2021). As part of implementing the core value of care which TIAs emphasize, researchers must be prepared to help research participants in managing any emotional distress that they might experience during the research. It is recommended that researchers create a plan of care that supports participants to deal with stress and to assist in obtaining access to care services and supports when needed, as Cascio et al. (2020) recommend in the case of autistic individuals specifically. The TIA model also emphasizes that research participants should be provided with information on trauma-informed care resources (SAMHSA 2014). It encourages researchers to have a basic capacity to recommend on specific trauma supports and services as well as to have a basic training on trauma in order to be able to help participants safely cope with stress that may arise during participation in the research (Goodwin and Tiderington 2022; SAMHSA 2014). An instance illustrating the care principle highlighted by TIAs and POREA, as demonstrated by the first author during fieldwork, involved informing participants about housing options such as Community Living BC and introducing them to local social programs tailored for autistic individuals, of which they were previously unaware.

Considering the obstacles many autistic people face when seeking practical information, researchers equipped to advise on available supports and services to autistic individuals can be invaluable. The third author of this study emphasizes how her engagement in support groups alongside other autistic women and mothers of autistic children has facilitated the acquisition and sharing of practical knowledge regarding available services and supports which are often challenging to locate elsewhere. These gatherings have also fostered discussions on the shared experiences unique to being an autistic individual, as well as the specific challenges of adulthood, womanhood, and motherhood in the context of autism.

To avoid re-traumatization and harm, other recommendations that are informed by TIAs include providing participants with sensitive interview questions in advance and including trauma-informed language when interacting with participants (SAMHSA 2014). Preparing participants in advance for participation in research is also a strategy that was suggested by Cascio, Weiss and Racine (2020). Indeed, the third author of this paper, while participating in the first author’s PhD study, recommended providing focus group questions in advance to aid autistic individuals in preparing for research discussions, especially in group settings. This approach allows them time to contemplate topics and formulate responses, fostering a structured and predictable research environment. Embracing this practice can be especially beneficial as researchers may not always anticipate what participants might perceive as sensitive.

Moreover, difficulties with social communication may make it challenging for some autistic people to express and share their feelings and/or to regulate their emotions and reactions (American Psychiatric Association 2013; Weiss and Fardella 2018). This makes the researchers’ ability to recognize signs of distress and symptoms of trauma during the research process, assist research participants in managing distress, and offer care resources particularly crucial in autism research.

When discussing sensitive topics and sharing private, traumatic, or harmful memories and events, providing research participants with choice, another central principle in TIA, can promote a sense of safety. In addition to social anxiety, unusual sensory sensitivities and response are common in autism and they are often demonstrated by negative feelings of discomfort, distress, and sometimes even physical pain (Smith and Sharp 2013; Brake 2024b). Autistic people in prior research emphasized how online spaces and computer-mediated communication, which usually occur in a predictable and structured environment, are more comfortable and safe for some. Many of them found online engagement helped to reduce anxiety, pressure, and stress that results from dealing with communicative and sensory challenges in face-to-face interaction and environments (van Schalkwyk et al. 2017). Hence, researchers can offer participants the option to choose to participate online in research, when possible. Using multiple and alternative modes of communication and paying attention to the environment of research were also suggested by POREA (Cascio et al. 2020).

During his fieldwork, the first author observed that participants, whom he had previously met face-to-face, appeared more relaxed during online one-on-one interviews and focus groups. They actively participated in discussions and displayed enthusiasm for further research involvement. The remote format not only allowed them to choose their interview location, such as being in their own homes, but also provided control over interview logistics, screen visibility, and information sharing methods (e.g., through chat rooms), thereby enhancing their comfort levels.

Furthermore, informing participants that they have the right to stop the interview or skip questions when discussing topics that might trigger past trauma provides participants with control over what and how much to share and contributes to their sense of emotional safety (Nonomura et al. 2020; Isobel 2021). This is clearly good practice with all potentially trauma exposed populations and ensures greater inclusion of autistic individuals and groups in research (Mendel, Sperlich, and Fava 2021).

Emotional safety can also be promoted through consent forms where researchers clearly explain how they will protect participants’ safety, privacy, and confidentiality during and after the research (Campbell, Goodman-Williams, and Javorka 2019). When discussing experiences of intimate violence, such as experiences of abuse by others, protecting participants’ confidentiality is very important for their emotional safety (Nonomura et al. 2020). This can be supported through providing a clear research plan and identifying expectations in research, practices that create a sense of safety for participants who have traumatic experiences and unexpected harm (Mendel, Sperlich, and Fava 2021).

In short, being trauma-informed is crucial for mental health and autism researchers, emphasizing sensitivity to participants’ vulnerabilities regardless of individual trauma histories (Isobel 2021; Quijada et al. 2021). Prioritizing and acknowledging participants’ need for safety and comfort, and minimizing re-traumatization risks are essential for acknowledging lived experiences in autism research. Incorporating these trauma-informed practices with POREA minimizes harm, fosters positive research interactions, and enhances opportunities for meaningful research and storytelling (Mendel, Sperlich, and Fava 2021).

Focus on researcher-participant relationships: Trustworthiness and transparency

Drawing on person-centered care which concentrates on the interpersonal relationship between providers/researchers and patients/participants as well as relational and everyday ethics (Cascio and Racine 2018; Cascio, Weiss, and Racine 2021a; 2021b), POREA’s key component of researcher-participant relationships requires increased attention to the power dynamics in research. It calls for reducing the power imbalance between researchers and human subjects and their communities to better provide participants, especially vulnerable ones, with safe and positive research experiences (Cascio and Racine 2018; Cascio, Weiss, and Racine 2021b). Further, this guidepost includes attention to participants’ past and present social experiences and interpersonal relationships and how they may affect participants’ research experience and decisions (Cascio and Racine 2018; Cascio, Weiss, and Racine 2021b).

One key aspect of the focusing on researcher-participant relationships principle is the need for trusting relationships between researchers, participants, and the larger community (Cascio and Racine 2018), specifically in context of autism research (Cascio et al. 2020). This component overlaps with TIA’s key principle of establishing trustworthiness and transparency in research which requires recognizing imbalances of power in provider-patient relationships and emphasizes building trusting relationship as a basic trauma-informed practice that works against this imbalance (Reeves 2015).

Trust is fundamental in research (McDonald et al. 2008), especially when it involves working with groups that experience vulnerability (Emmel et al. 2007). Trust and rapport also help in gaining access to hard-to-reach communities and vulnerable groups (Emmel et al. 2007). Having a trusting participant-researcher relationship and offering participants a space for sharing and reflecting on their stories may even have therapeutic benefits to them (Isobel 2021). Most of the focus in research is on trust relationships in patient-practitioner health research contexts (Guillemin et al. 2016). Despite acknowledging the central role and the importance of trust in research by researchers and research participants, as well as by ethics review boards, research on trusting relationships between researchers and participants and their impact on the whole research encounter is still relatively neglected (Emmel et al. 2007; Guillemin et al. 2016; McDonald et al. 2008).

Research indicates that individuals (including research participants) who have experienced traumatic events and harm may be more mistrustful of others (Gobin and Freyd 2014; Goodwin and Tiderington 2022; Voith et al. 2020). In case of autism, there is no research that directly examined how negative experiences affect trust in this group. Research on trust in autism in general is very limited despite the significant differences found between autistic and non-autistic people in trust processing and evaluation. The few experimental studies on trust and selective trust in autism indicate that due to communicative difficulties, autistic individuals have a tendency toward trusting unfamiliar others and thus, compared to non-autistic people, they are more easily misled by others (Yang et al. 2017). Trust is particularly important in autism research given some autistic individuals’ difficulties with evaluating trustworthiness which may make them more vulnerable to harm as well as the high prevalence of trauma in autism and the significant impact of traumatic and adverse experiences on people’s tendency and ability to trust others (including researchers) in general. Therefore, we suggest that establishing and maintaining trusting relationships becomes an essential ethical practice for research that involves autistic persons, regardless of the research topic and scope.

Following POREA, Cascio et al. (2020) provide a number of practical suggestions that can minimize power imbalances in research involving autistic people and that can help researchers create and maintain trusting relationships with participants before, during, and after conducting the research. For example:

involve people with autism and their communities in research in other ways than as participants, build relationships with participants’ broader communities, positionality, attend to power imbalances between researchers and participants, manage emotional experiences, and follow-up by sharing impacts of research (p. 1658).

Formal consent forms may help in building trust but not necessarily confirm trust (O’Neill 2002). Increased social engagement and involvement in communities where participants and researchers live goes beyond the requirement for consent forms and is described as being very effective for building and maintaining trust in research in general (Emmel et al. 2007; Kerasidou 2017) and in autism research specifically (Cascio et al. 2020, 1658). In fact, the key principle of collaboration emphasized by TIAs addresses the sharing of power in research (L. D. Butler, Critelli, and Rinfrette 2011; Isobel 2021; Mendel, Sperlich, and Fava 2021; SAMHSA 2014) and also suggests involving participants and community partners in the research as more than just participants (Goodwin and Tiderington 2022). This research strategy which is assumed to facilitate trust building and help minimize structural inequities that often exist in researcher–participant research partnerships (Isobel 2021), constitutes another form of community engagement. Following this recommendation, the third author of this study is an autistic adult as well as a mother of four teen-aged and young adult children, some of whom are also diagnosed with autism. Inviting an autistic individual to share in co-authorship reflects our belief in the importance of collaboration as a cornerstone in providing space for autistic individuals and groups to make their voices heard and to advocate for their communities.

One suggestion by Cascio, Weiss and Racine and The Autism Research Ethics Task Force (2020) to build rapport before the study starts is having experience, either professionally or personally, with autism. The first author’s work experience with autistic individuals preceding his PhD research, coupled with volunteer work at local institutions that provide services for autistic people where he conducted his fieldwork, exemplify practices that contribute to creating rapport. Other practical recommendations for community engagement and collaboration which proved helpful in creating trust include sharing of knowledge and findings with participants and stakeholders. For example, sharing knowledge on specific topics related to autism or sharing research goals, plans, and findings with autistic individuals and other stakeholders, as the first author did before and after data collection. These practices of sharing knowledge and getting feedback from stakeholders align with both POREA and TIA as they recognize transparency as an important principle that informs researcher-participants relationships. They also show care, respect, and support that further help maintain trusting relationships with the autism community. Giving opportunities for autistic community members to review research findings also enhances meaningful impact on research outcomes and opens lines of communication that pave the way for a deeper understanding of autistic individuals and other stakeholders’ perspectives and values (Deschenes and Kunyk 2020).

Further, as the first author’s ethnographic experience affirmed, it may be important to some autistic persons to have insight into the researcher’s social identity and perspectives on autism during the recruitment process. As one research participant suggested, a positionality statement could be included in recruitment flyers and documents with information about the researcher’s identity, gender, and preferred gender pronouns as well as whether the researcher is a neurotypical or autistic person.

Negative, stereotypical, and stigmatic views as well as misconceptions on autism were previously reported as common (Botha, Dibb, and Frost 2022; Sasson et al. 2017; Brake 2024a). The prevalence of dehumanizing views of autism, especially among non-autistic people, further contributes to adverse experiences of rejection and exclusion, and emotional or physical harm (Botha, Dibb, and Frost 2022; Sasson et al. 2017). In relation to that, and informed by the first author’s fieldwork experience, for some autistic participants, gatekeepers, and other stakeholders, it might be important to know how researchers view the autism condition, specifically whether they treat it as a disorder/disease or as a difference/neurodiversity that should be respected. Researchers need to be prepared for such requests and to provide honest answers to them, prior to said participants signing the consent letter or participating in research. Sharing information with potential participants about the researcher’s identity and personal understanding of the autism condition reflect principles of positionality, transparency, and reflexivity which are important for fostering trusting relationships between researchers and participants.

As experiences of exclusion and rejection are often related to stigma (Brake 2024a), making research non-stigmatizing through inclusive and destigmatizing language, therefore, is an important research practice that speaks to the acknowledgment of lived world (Cascio et al. 2020). Using inclusive terminology (as noted in the introduction regarding the preference for terms such as ‘autistic person/individual’) and developing more accessible and open communication also improve participant-researcher relationships and provide choice and control for the research participants (Cascio et al. 2020; Cascio, Weiss, and Racine 2021b). In addition to making the language in recruitment and consent forms simple and concrete, and providing enough time to decide about participation in research, these measures help in creating an autism-friendly consent process and autism-friendly decision making (Cascio et al. 2020).

Strategies for how to best conduct sensitive interviews that were discussed earlier are also related to POREA principle of focus on researcher-participant relationships as they can impact participants’ experience in the research (Silva, Cascio, and Racine 2020). Creating trusting relationships with the researcher, therefore, is particularly important when sensitive topics are discussed (Dempsey et al. 2016) such as sharing stories and intense emotions on traumatic issues from their past. One effective way that is suggested by TIAs for promoting trustworthiness in context of research is transparency. Being transparent about the potential impact that involvement in the research process may have on participants and creating a structured and predictable research process and practices in each stage of the research fosters trust in research (Goodwin and Tiderington 2022; Mendel, Sperlich, and Fava 2021). These practices are particularly essential with individuals who have experienced unexpected situations of personal harm (Mendel, Sperlich, and Fava 2021) and they reflect researchers’ commitment to care about those involved in the relationship, a basic requirement of relational ethics (Deschenes and Kunyk 2020; Ellis 2007). Acknowledging and being aware of these previous harms and providing a stage for participants to make their stories heard also contribute to participants’ sense of safety and trust in research (Voith et al. 2020).

In short, trustworthiness and transparency are fundamental for research involving human subjects with potential history of harm and trauma such as autistic people. Designing research plans and practices that help to create and maintain trust relationships is one means of attending to interpersonal, relational, and everyday aspects of human subject research. These practices also help in implementing and accomplishing both POREA’s and TIA’s principles which address and emphasize the special needs of research participants and aim to minimize harm, maximize benefit, and provide positive and safe research experience for all those involved.