Research Impacting and Involving Autistic Adults Should Be Trauma Informed

Abstract

The autism research field to date has yet to widely adopt trauma-informed thinking and practices. Since most autistic adults have a history of experiencing trauma, the field must shift to center trauma in the design of research for this population. This article calls for widespread integration of trauma-informed strategies into existing research practices focused on autistic adults. We present a summary of trauma sources across research domains and make recommendations for how to integrate existing research related to trauma experienced by autistic adults and trauma-informed practices in the current research landscape. With trauma-informed modifications to research practices, we suggest that accessibility of participation in research for autistic adults with a history of trauma will be improved and that potential trauma-related harms of research will be reduced. Additionally, considering trauma more widely as a potential modifier of autism domains including social functioning, sensory sensitivity, self-soothing behaviors, cognitive functioning, and autonomic arousal may lead to a more comprehensive understanding of these areas. Taken together, we believe that adopting trauma-informed research approaches will lead to more meaningful, impactful research.

Community Brief

Why is this topic important?

Most autistic adults have experienced some type of trauma, but the autism research field generally has yet to take that into consideration for how they design and run studies focusing on this group. The autism research field must shift to prioritize trauma-informed research strategies in order to better understand autistic experiences and to minimize trauma caused by the research process itself.

What is the purpose of this article?

This article asks researchers to be thoughtful and even critical about how their studies could impact their participants and offers suggestions for different ways to improve. Specifically, we (1) summarize existing research about sources of trauma for autistic adults and (2) describe how we can make research better (i.e., more trauma informed) based on what we already know about how autistic adults experience trauma.

What personal or professional perspectives do the authors bring to this topic?

The authors’ professional perspectives span several fields of study, including disability studies, gender studies, neuroscience, genetics, education, and data science. Additionally, two of the authors are allistic, while four of the authors are autistic and are informed by their personal experiences in the workplace, medical system, education system, and daily life.

What is already known about this topic?

Although we know that autistic people frequently experience trauma and have information on trauma-informed care, little research to date has focused on how research with autistic adults can be more trauma-informed.

What do the authors recommend?

We broadly suggest that researchers look at each aspect of their study, ideally in partnership with autistic collaborators, to identify potential areas of harm based on the different trauma sources we describe in the article. Our specific recommendations include making changes to assessments to better identify signs of trauma and trauma coping behaviors that may be otherwise seen as a part of someone’s autism spectrum presentation. For example, we suggest that researchers consider sensory needs (like dimmed lights) in the design of their study and that they ask questions about the sensory needs of their participants so that they can complete the research study without unnecessary discomfort. We also suggest that researchers work to better identify signs of trauma and trauma coping behaviors that may be otherwise seen as a part of someone’s autism spectrum presentation.

How will these recommendations help autistic adults now or in the future?

These recommendations have the goal of helping autistic adults to feel safer accessing and participating in research. We hope that more standard consideration of trauma will lead to research that is more inclusive of autistic adults with different trauma experiences and sensory needs.

Introduction

A significant portion of the autistic population has experienced trauma.^1–4 One study focusing on intrapersonal trauma in autistic adults found that 72% of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault.² Furthermore, estimates of autistic adults who currently meet or have historically met clinical criteria for post-traumatic stress disorder (PTSD) ranged from 40% to 60%.^2,3 Additionally, there is some evidence that trauma may be more likely to be experienced cumulatively (i.e., the number and/or severity of symptoms increases with the number of traumatic incidents) for autistic adults.⁴ The combination of trauma being experienced cumulatively and at such high frequency makes it an urgent consideration for autistic well-being.

In line with the U.S. substance use services agency definition of trauma as relevant to behavioral health, we define trauma here as “experiences that cause intense physical and psychological stress reactions.”⁵ We also extend our understanding of trauma through nonmedical perspectives on trauma. Trauma is defined not just by a traumatic event and an individual’s physical and emotional reaction to it but also by the social environment in which it is experienced.^6,7 Trauma is inherently shaped by the resources and support available for each individual as well as the cultural context of their experience.⁶ Given the established connection between trauma and health outcomes as well as the ability for trauma to be detrimental to quality of life,^8,9 the high frequency of trauma among autistic people should be treated with the utmost urgency and care. Additionally, there has been evidence for the potential of research, especially intervention studies, to be harmful to autistic participants.^10,11 Given the high incidence of trauma among autistic adults, the known health consequences, and the possibility for re-traumatization, researchers working with autistic adults should consider adopting trauma-informed practices.

Trauma-informed care is the active examination and tailoring of current practices and systems to support recovery and growth, reduce the likelihood of re-traumatization, and center individual autonomy.^12–14 Well-developed frameworks for trauma-informed primary care and women’s health care have helped to bring trauma and PTSD to the forefront of care considerations,⁸ particularly in clinical situations where they might have otherwise remained unaddressed. In trauma-informed primary care, priorities include broadly defining trauma, addressing both recent and lifelong trauma, and an essential focus on provider support and well-being, with core components including environment of care, screening for trauma, and understanding response to trauma.⁸ These frameworks have been shown to reduce trauma-related triggers and promote healing for patients.⁸ Providers who understand this connection are able to create clinical environments that are less triggering for both patients and staff, refer individuals to appropriate trauma-specific services as needed, and then develop more effective therapeutic alliances and treatment plans with their patients. These benefits need to be extended to the autism research environment.

We are not alone in calling for more focus on trauma in autism research and care.^15–18 Here, we propose that trauma should be a central consideration in autism research and will provide suggestions for how to integrate academic and community understanding of the role of trauma in the lives of autistic adults into research practices. We include an overview of the common sources and potential consequences of traumas often experienced by autistic adults. We also address specific ways that current research practices that engage with autistic adults can contribute to trauma and how these practices need to be amended.

Understanding Trauma Across Autism Research Domains

Based on existing literature as well as insights from the lived experiences of autistic co-authors, we identified several common sources of trauma for autistic adults. We aim to provide a resource to understand trauma sources as well as changes needed in research practices. It is beyond the scope of this introductory piece to capture the complexity of how these sources intersect for an individual, much less a diverse group of individuals.

Medical and law enforcement systems

The medical system can be a source of trauma for autistic adults in multiple ways, including being denied necessary care, misdiagnosis, emergency services, and harmful interventions (see Table 1). This risk is compounded when systems of bias intersect, leading autistic people of color to be misunderstood or not believed due to the intersection of ableism and racism and to feel unsafe engaging with the medical system.^19,20 Another system-based source of trauma for autistic adults is in engaging with law enforcement.^21–23 Sensory discomfort, physical vulnerability, and removal of agency are some components of these experiences that may have the most negative impact on autistic adults.^22,23 Again, these vulnerabilities compound when intersecting with other systems of oppression, such as racism.^19,24,25 Research with autistic youth has demonstrated that the medical and law enforcement systems interconnect.²⁶ For instance, any hospitalization event make autistic youth 9.2 times more likely to experience police contact and vice versa.²⁶ These systems may be interlocking for adults as well, as both emergency medical department experiences and police contact are relatively common among autistic adults.²⁷ Over a 1- to 1.5-year study period, 42.5% of the autistic adults in the sample reported experiences with the emergency department and 32.5% reported contact with the police.²⁷

Table 1.

Common Potential Sources of Trauma for Autistic Adults: Considerations for Research

Source	Areas of vulnerability/harm	Examples
System sources
Medical system	Denied necessary care/“medically deserted” (as in nontreatment due to limited clinical knowledge, with long-term consequences)^3,19	A drug trial study that records comorbidities/uses medical history. To account for incomplete medical history for individuals who have been medically deserted, discuss experiences and symptoms in addition to formal diagnoses to ensure safe participation. Include in the consent process a care plan for adverse effects of the drug and closely review with the participant, making sure it is sufficient for them to feel supported.
	Misdiagnosis^28,29	A genetics study of ASD, ADHD, and their overlap in common variants. Collect information on both self-diagnoses and formal diagnoses and ask participants if they feel like their formal diagnoses accurately reflect their lived experiences.
	Harmful intervention^30–34	An intervention study using a modified ABA approach for adults. Intervention design, informed consent documents, and care plans in case of adverse effects should consider specific ways in which ABA has traumatized autistic people in the past (e.g., ignoring self-regulatory benefits of stimming) to minimize present risk and should be developed in collaboration with autistic adults (with ABA experiences, when possible).
	Emergency medical department^27,35	A clinical study exploring autistic patient experiences of sensory trauma while in the emergency department and prehospital setting. If patients are low acuity and can be surveyed while in the emergency department, try to ensure they have a quiet space to participate. Include in the survey design sources of sensory trauma as well as patient recommendations for a better sensory experience.
Employer practices	Diagnosis disclosure outcomes^36,37	A study developing a work skills training program. Intervention design should consider that disclosure may lead to an unsafe environment at work. Possible mitigations of this risk could involve the use of surveys or interviews to determine each individual’s sense of psychological safety at work and take any fears or anxieties into account when designing and presenting skills training.
Employer practices	Harms and limits of ‘reasonable accommodation’ system^37,38	A retrospective study with a corporate partner to evaluate factors impacting retention of autistic employees. For study design and results interpretation, collaborate with autistic adults who have been employed in similar environments who have engaged with the reasonable accommodation system to varying degrees.
Education system	Harms and limits of “reasonable accommodation” system^39–41	An observational study looking at measures of student success. Collaborate with autistic adults in the design of the study and the metrics of success that are rooted in lived experiences. Design collection instruments to avoid stigma or blame.
Education system	Environment and lack of support^39,41,42	A focus group study that allows autistic adults to share how they have been impacted by their experiences within the education system and how supports have been helpful or are lacking. Ensure the leaders of the focus group adopt neutral language and that there are agreed-upon community guidelines for discussion within the group, including a plan for care when a distressing subject is brought up.
Law enforcement	Sensory discomfort^22,43	A longitudinal study of sensory sensitivities among autistic adults. Include self-report measures for participants to report experiences that may have impacted their sensory sensitivities/needs over time, such as police interactions. Have a plan of care and available resources in case reflecting on sensory needs is distressing for participants.
	Physical safety^19,22,23	A study evaluating an educational tool for helping autistic adults stay safe during police interactions. Screen for previous trauma related to police interactions prior to study enrollment. Consider excluding participants with severe trauma-related symptoms to avoid re-traumatization. Have plans of care for psychological distress, including potential embodied reactions to the training.
	Removal of agency^22,23	A qualitative study of autistic experiences with police interactions or incarceration. Emphasize and enhance participant agency in the study design and consent processes. This could include thorough consent discussion, emphasis on opting out, having scheduled check-ins to ask about taking breaks or opting out, and showing the participant the questions and topics in the order you plan on covering them with time to review and ask for any changes.
Environmental Sources
Sensory environment	Mismatch between sensory needs and environment^44–46	An imaging study (e.g., MRI/fMRI) in which participants are exposed to sensory stimuli. In the design of the study, care should be taken to incorporate breaks where participants can “de-stim” or recover from stimuli. Additionally, a thorough sensory needs assessment should be done prior to imaging and consent should emphasize the sensory environment of the study.
Interpersonal	Consequences of stigma and associated masking^{2,3,17,47–51}	A study testing the efficacy of an intervention targeting social skills. In the design of the intervention, consider how it overlaps or is distinct from masking and whether it enforces existing stigma; work with autistic adults to get feedback. Include in the framing of the intervention and in the consent form a recognition of the harms of masking. Have a care plan in place in case the intervention is re-traumatizing.
Interpersonal	Abuse/violence, victimization^2,17,47,48	A qualitative study exploring experiences of autistic adults with abuse/violence. In the consent process, emphasize potential for re-traumatization when discussing experiences and check in with participants throughout the interview to gauge how they are feeling. Offer to pause or stop if needed.

In this table we present different areas of potential harm that have been shown to impact autistic adults, examples of how they may come up in a research setting, and what could be done to mitigate the risk to participants. Examples are not meant to be exhaustive but to spark ideas on how awareness of potential areas of harm and trauma-informed tools could apply to different research settings and designs.

ASD, Autism Spectrum Disorder; ADHD, Attention-Deficit/Hyperactivity Disorder; ABA, Applied Behavior Analysis; MRI, Magnetic Resonance Imaging; fMRI, functional Magnetic Resonance Imaging.

Employer practices and education system

Employer practices comprise another system that provides a source of trauma for autistic adults, especially as relevant to disclosure of diagnosis and the reasonable accommodations system.^36,37,39 Review of disclosure outcome experiences has found that while instances of increased acceptance and accommodations exist, stigma and purposeful discrimination are common and harmful.^36,37 Additionally, the current reasonable accommodations system is inadequate in making many workplaces accessible to autistic adults.³⁴ Many of the harms imposed by the insufficient accommodations system in the workplace exist in education systems available to autistic adults as well.^39,40 For example, the Autism primary educational classification per the Individuals with Disabilities Education Act (IDEA) is typically embedded within an Individualized Education Program (IEP).⁴⁰ An IEP is the most regulated form of accommodation in primary and secondary education but is only available to students with an autism diagnosis who can also demonstrate that this disability impairs their educational performance.³⁹ This approach excludes those on the spectrum who are not formally diagnosed.³⁹ Furthermore, postsecondary endeavors (including higher education) vary in structure and environment; combined with the lack of adequate support, this can contribute to stress and reduced well-being among autistic adults.^39,41 For example, within the college system of accommodations, there is a significant reduction in the number of autistic people receiving sufficient accommodations compared with primary and secondary school.^39,41 This is partly due to the large amount of work autistic people need to do on their own to advance into college and receive accommodations within a nebulous process as IDEA provisions do not apply in postsecondary settings.^41,42

Environmental sources

There are also environmental sources of trauma that are not tied to a single system and are latent in the day-to-day experiences of autistic adults. Being aware of different areas of vulnerability that autistic adults may be overexposed to is important for researchers to make sure studies are as accessible as possible and to minimize risk. Therefore, these environmental sources should also be considered when designing study protocols and consent processes (see Table 1). Autistic children and adults experience high rates of interpersonal victimization, abuse, and discrimination.^2,17,47 Interpersonal events are more likely to go unreported and more likely to lead to PTSD symptoms than they are for allistic (non-autistic) individuals.^3,17 These differences are due in part to underlying stigma as well as the extended range of events that are experienced as traumatic by autistic adults.^3,17 The minority stress model describes this extended impact of everyday discrimination, internalized stigma, and concealment and has been applied to help explain mental health problems in autistic individuals.⁵² In a survey of autistic adults, there were many incidences (e.g., bullying, abandonment by a parent) that did not fall into established Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, categories yet were still experienced as trauma.³ Once again, intersectionality must be considered. For example, autistic cisgender women and gender minorities are more likely to experience trauma and stigma than those who are allistic and/or cisgender men.^2,17,48 Stigma attached to neurodivergence is widespread and frequently experienced by autistic adults, having severe consequences.^48,49,53 These consequences include worsened overall well-being and increased autistic masking/camouflaging/compensation, which, in turn, can lead to autistic burnout and further reduce well-being.^{47,49–51,54–56} Masking, camouflaging, and compensation are terms used to describe conscious or subconscious suppression of natural autistic responses, often due to feeling the need to hide or control traits/behaviors associated with autism for social self-preservation in settings that expect “neurotypical” behavior.⁵¹ Finally, as explored in depth in the following section, the sensory environment can be a latent source of trauma due to sensory processing differences that are common among autistic adults.^45,46

Consideration of Sensory Needs and Trauma for Research Practices

While different patterns of sensory processing have been described in previous work, the traumatic consequences of having the sensory environment conflict with those processing patterns have not been detailed systematically. We support a reframing of some sensory processing differences, including hypersensitivities and hyposensitivities to stimuli, as sensory needs that, when unfulfilled or violated, can lead to sensory trauma.⁴⁴ Sensory needs as we describe them refer to the conditions necessary for an individual’s sensory profile to be aligned with a given sensory environment and, therefore, for the environment to not cause distress/discomfort to the individual. In turn, we will define sensory trauma here as specifically referring to the experience of trauma based on input from the sensory environment that violates sensory needs. The concept of sensory trauma applied to autistic experiences has been supported by autistic life narrative and testimony.⁴⁴ Fulton and colleagues posited that sensory trauma can come from ordinary daily activities, can be experienced multiple times a day, is latent in the environment and unavoidable, and may go unrecognized or be misunderstood.⁴⁴ How to measure, account for, seek to reduce, and prevent sensory trauma are all challenges that autism research must address in earnest.

Existing evidence links sensory processing types and core autism-diagnostic behavioral domains.⁴⁶ It is worth considering that this relationship would extend to unmet or violated sensory needs as a contributing factor to behavior and cognitive functioning. Performance on traditional research measures (tasks or questionnaires) should not be considered a standard measure of ability or “autistic phenotype” but as a static data point along a dynamic continuum of expression that is influenced by a combination of transient and stable factors, one of which being sensory trauma. This aligns with the concept of atypical resource allocation, which suggests that narrowed attention/reduced attentional capacity leads to reduced resources for cognition and ultimately contributes to the cognitive patterns seen among autistic people.¹³ Based on well-established links in the attention literature between sensory perception and attentional resources, Goldknopf also points to sensory needs as being a potential driving or exacerbating factor in the process of resource allocation and its ultimate effects on higher cognition/processing, especially in autistic people with stronger sensory profiles, that is, more sensory hypo- and hypersensitivities.¹³ When taken together, previous work demonstrates a need to address the impact of sensory needs and trauma on the assessment and understanding of the “autistic phenotype.”

Overview and Recommendations for Trauma-Informed Research Practices Involving Autistic Adults

When researchers understand potential for inducing trauma or causing participants to re-experience trauma through research procedures (e.g., in screening for or in interviews relating to autism, through sensory environments, emotional burden of study components), they can craft better study and consent protocols that aim to avoid this phenomenon, therefore providing important trauma-informed support despite not directly providing services. We hope that the summary of trauma literature as it relates to autistic adults provided in this article as well as the examples provided in Table 1 can serve as a guide to improve study design and consent processes. This trauma-informed approach has the additional benefit of facilitating research that is more representative of community needs and priorities, as more autistic adults are likely to feel comfortable engaging with research that is trauma informed and therefore more inclusive.

Much of the scientific literature to date describing trauma-informed care relevant to autism has valuable recommendations for change in clinical practices yet has focused on children and does not address the need for modified research assessments and processes.^16,60,61 Our recommendations on how to extend previous trauma-informed work in autism and other fields to research practices involved in recruitment and enrollment include creation of autism diagnostic interview amendments and templates/guidelines for assessments associated with diagnosis that are trauma informed. Studies have shown that both signs of trauma and trauma coping behaviors can overlap and be mislabeled as autism-related behaviors, which indicates an important distinction and consideration for designing more mindful autism interview practices.^57–61 Accordingly, we suggest that researchers consider the addition of existing assessments for frequency of trauma exposure and PTSD symptoms to better understand how current presentation may be impacted by trauma. Additionally, given the known negative effects of stigma and ableism, researchers can make their work more trauma informed by using more inclusive language and practices.⁴⁷ Throughout the study process, researchers should ask each autistic person what language they prefer (identity-first, person-first), avoid “functioning level” language, acknowledge that stimming is an important part of self-regulation, and encourage celebration of different forms of communication (including sign language, letter boards, and text-to-speech devices).^62,63 Additionally, many of the previous recommendations suggested related to trauma-informed practices when working with autistic children can be extended to adults. These include developing instruments specifically for autistic individuals that measure trauma reactions, empirical investigations of modified trauma interventions for autistic children to evaluate effectiveness, and collaboration between professionals specializing in autism and trauma/PTSD.¹⁶ When developing instruments and potential interventions for adults specifically, researchers should additionally consider high demands on executive functioning; low societal tolerance of social differences; and independent living, employment, and relationship expectations. Finally, we should recognize that many autistic people are experts on what they experience and what helps alleviate negative effects of their own trauma.⁵⁷ The research field still needs to accept this basic tenet in order to develop trauma-informed practices for study design and execution that draw upon autistic individuals’ input and priorities.

There is also an urgent need to address harm being done within current research practices that may exacerbate sensory trauma, in particular.⁴⁴ Recruitment and data collection should be completed in a manner that is accommodating for the sensory needs of autistic persons. Part of the consent process should include a trauma-informed explanation of what the study would entail as well as review of what the sensory environment would be during participation in the study. Trauma-informed explanations should include transparency about potential triggers, a conversation about the participant’s trauma-related concerns, and up-front discussion of resources that are available if the participant becomes distressed. This should also include reiteration that participants are welcomed and encouraged to communicate if they experience distress as part of the study and reminders that they may stop participation at any time. For the sensory environment overview, the researchers should share information on stimuli present in the research space (if physical), such as types of lights and sounds, with participants. We additionally suggest the development of a standard sensory needs assessment to be used in studies that include autistic adults (including in studies outside of the body of autism research, in which researchers may not be aware they have autistic adults participating). The sensory needs assessment should include details about sensory sensitivities, any helpful sensory stimuli, and any beneficial stimming behaviors. This assessment can inform how to modify the environment for participation in a way that better fits the needs of the individual (including welcoming them to engage in stimming behaviors if applicable) and mitigate effects of any sensory-based distractions. Creation of these protocols requires co-involvement and agreement from a panel of autistic adults.⁶⁴

Despite existing evidence in other fields for the benefits of trauma-informed care and the well-known high rates of trauma experienced by autistic adults,^{1–4,8,12–14} the potential impact of cumulative trauma from the research process as it relates to known sources of trauma remains largely unrecognized by the autism research community. However, we must note that there is no guarantee that practices that subscribe to the trauma-informed approach will actually prevent or mitigate trauma. We suggest that the recommendations and considerations presented in this article serve as a starting point for the development of more inclusive, trauma-informed research practices and would like to emphasize the importance of continued evaluation of the effectiveness of any changes made as well as the active collaboration with autistic participants and advisors throughout the process.

Conclusion

In order to improve the accessibility and merit of research involving autistic adults, recognition of the high rates of trauma and the lasting impact of that trauma experienced by autistic adults is necessary. We propose an approach that acknowledges the many possible sources of trauma as well as the fact that the impact of trauma may be experienced across a variety of timelines, bodily systems, cognitive functions, and more. One major source of trauma that is especially relevant for autistic adults, but is currently largely unconsidered, is the sensory environment. The accessibility of participation in research could be greatly improved by considering possible sources and triggers of trauma that are present within the study process. Using the specific lens of trauma, we suggest that the autism research field take a more integrated approach and engage in broader inclusion of autistic adults as active participants and collaborators. Engaging autistic adults in research studies as researchers, advisors, and via participant feedback with the goal of defining and improving trauma informed approaches is of paramount importance.

Footnotes

Acknowledgment

The authors would like to thank Ted Brodkin for his vital support in bringing this project to fruition.

Authorship Confirmation Statement

S.L.S.: Conceptualization, investigation, writing—original draft, writing—review and editing, and project administration. L.A.: Conceptualization, investigation, writing—review and editing, and project administration. L.X.Z.B., K.B., and M.G.O.: Conceptualization, validation, and writing—review and editing. S.C.T.: Conceptualization, investigation, writing—original draft, writing—review and editing, and project administration. The article has been submitted solely to Autism in Adulthood.

Positionality Statement

The authors lend a variety of perspectives based on lived experience and academic expertise. S.L.S. is a White, allistic medical student with academic experience in the autism research field. L.A. is a late-diagnosed autistic White woman, music educator, data scientist, and multidisciplinary designer who, through her role as a government worker, advocates for neurodiversity awareness, inclusion, and trauma-informed accommodations in the workplace. L.X.Z.B. is a committed advocate, community organizer, and policy expert at the nexus of disability rights and disability justice who has spoken and consulted internationally and throughout the United States on a range of topics at the intersections of disability, race, class, gender, and sexuality and has published in numerous scholarly and community publications. Their work has often focused on interpersonal, state, and corporate violence, deprivation, and exploitation targeting disabled people in the margins. M.G.O. is an autistic activist-scholar of color and parent of autistic children whose graduate education and intersectional research, pedagogy, and practice encompass a range of disability justice topics, including autism. K.B. is a late-diagnosed person with autism and a history of trauma from the education environment and who works as a graduate-level clinician trained in and using a trauma-focused approach across all clients in the primary/secondary education system, inclusive of the autism community. S.C.T. is a White, allistic data scientist and researcher with a doctorate in neuroscience whose primary research has focused on behavioral and cognitive dimensions associated with the medical definition of autism. Their present work spans multiple research topics related to epilepsy, grounded in the pursuit of responsible, ethical, and inclusive research practices. While our team includes a diverse array of neurotypes, identities, and perspectives, we recognize that it cannot and should not speak for all autistic people and have tried to be mindful of this when constructing our work.

Authors’ Note on Process

As our writing process involved collaboration among multiple neurotypes, we thought it may be useful for future similar collaborations to describe what methods we used and considered to allow for an inclusive workspace. First, our process was defined by an openness to multiple ways of communicating and processing information as well as a flexibility to accommodate. We explicitly discussed what types of meetings and information formats were most accessible to any member of the group at a particular time. As a result, we used a combination of small group and large group meetings that were synchronous; options for asynchronous feedback/input on shared documents; and provided meetings with live captions, recordings, and notes. We also checked in regularly on people’s capacity for different types of tasks and roles, acknowledging that this too changes over time. Second, citation practices in this piece were carefully considered so as to only include work that, to our knowledge and understanding, upholds the principles of neurodiversity and rejects ableism. One consequence of this effort is that there is some work related to the subject matter that will not be cited.

Author Disclosure Statement

M.G.O. is an editorial board member of Autism in Adulthood. The remaining authors have no competing interests, financial or otherwise, to declare.

Funding Information

There are no funding sources to report.

References

Hoover

. The effects of psychological trauma on children with autism spectrum disorders: A research review. Rev J Autism Dev Disord. 2015; 2(3):287–299.

Reuben

, Stanzione

, Singleton

. Interpersonal trauma and posttraumatic stress in autistic adults. Autism Adulthood. 2021; 3(3):247–256.

Rumball

, Happé

, Grey

. Experience of trauma and PTSD symptoms in autistic adults: Risk of PTSD development following DSM‐5 and non‐DSM‐5 traumatic life events. Autism Res. 2020; 13(12):2122–2132.

Rumball

, Brook

, Happé

, Karl

. Heightened risk of posttraumatic stress disorder in adults with autism spectrum disorder: The role of cumulative trauma and memory deficits. Res Dev Disabil. 2021; 110:103848.

Center for Substance Abuse Treatment (US). A Review of the Literature. Substance Abuse and Mental Health Services Administration (US); 2014. Available from: https://www.ncbi.nlm.nih.gov/books/NBK207192/ [Last accessed: October 12, 2022].

Carter

. When silence said everything: Reconceptualizing trauma through critical disability studies. Lateral. 2021; 10(1).

Fireweed Collective. Fireweed Collective. Available from: https://fireweedcollective.org [Last accessed: July 28, 2023].

Machtinger

, Cuca

, Khanna

, Rose

, Kimberg

. From treatment to healing: The promise of trauma-informed primary care. Womens Health Issues. 2015; 25(3):193–197; doi: 10.1016/j.whi.2015.03.008

Lobregt-van Buuren

, Hoekert

, Sizoo

. Autism, adverse events, and trauma. In: Autism Spectrum Disorders. ( Grabrucker

., eds.). Exon Publications; 2021. http://www.ncbi.nlm.nih.gov/books/NBK573608/

10.

Ne’eman

, Richman

, McCarthy

, Wilkenfeld

. A passing problem: Evaluating harm and benefit in autism research. Ethics Hum Res. 2023; 45(6):2–18; doi: 10.1002/eahr.500188

11.

Bottema-Beutel

, Sandbank

, Woynaroski

. Overview of issues in autism intervention research: Research design and reporting. Perspect ASHA SIGs. 2023; 8(6):1238–1247; doi: 10.1044/2023_PERSP-23-00104

12.

Miller

, Rees

, Pearson

. “Masking is life”: Experiences of masking in autistic and nonautistic adults. Autism Adulthood. 2021; 3(4):330–338; doi: 10.1089/aut.2020.0083

13.

Goldknopf

. Atypical resource allocation may contribute to many aspects of autism. Front Integr Neurosci. 2013; 7:82; doi: 10.3389/fnint.2013.00082

14.

Cleary

, West

, Kornhaber

, et al. Moving the lenses of trauma—Trauma informed care in the burns care setting. Burns. 2020; 46(6):1365–1372; doi: 10.1016/j.burns.2020.01.011

15.

Hume

, Burgess

. “I’m human after all”: Autism, trauma, and affective empathy. Autism in Adulthood. 2021; 3(3):221–229; doi: 10.1089/aut.2020.0013

16.

Peterson

, Earl

, Fox

, et al. Trauma and autism spectrum disorder: Review, proposed treatment adaptations and future directions. J Child Adolesc Trauma. 2019; 12(4):529–547; doi: 10.1007/s40653-019-00253-5

17.

Pellicano

, Fatima

, Hall

, et al. A capabilities approach to understanding and supporting autistic adulthood. Nat Rev Psychol. 2022; 1(11):624–639; doi: 10.1038/s44159-022-00099-z

18.

Botha

, Gillespie-Lynch

. Come as you are: Examining autistic identity development and the neurodiversity movement through an intersectional lens. Human Development. 2022; 66(2):93–112; doi: 10.1159/000524123

19.

Jones

, Nicolaidis

, Ellwood

, et al. An expert discussion on structural racism in autism research and practice. Autism Adulthood. 2020; 2(4):273–281.

20.

Lindsay

, Li

, Joneja

, Hsu

. Experiences of racism and racial disparities in health care among children and youth with autism and their caregivers: A systematic review. Disabil Rehabil. 2025; 47(5):1061–1080.

21.

Cooper

, Uppal

, Railey

, et al. Policy gaps and opportunities: A systematic review of autism spectrum disorder and criminal justice intersections. Autism. 2022; 26(5):1014–1031.

22.

Crane

, Maras

, Hawken

, Mulcahy

, Memon

. Experiences of autism spectrum disorder and policing in England and Wales: Surveying police and the autism community. J Autism Dev Disord. 2016; 46(6):2028–2041.

23.

Salerno

, Schuller

. A mixed-methods study of police experiences of adults with autism spectrum disorder in Canada. Int J Law Psychiatry. 2019; 64:18–25.

24.

Davis

, Smith

, Yang

, Wright

. Exploring racial discrimination, disability discrimination, and perception of the future among black-identifying emerging adults with and without autism in the United States: A mixed-methods descriptive study. J Child Adolesc Trauma. 2024; 17(4):1019–1034.

25.

Straiton

, Sridhar

. Call to action for autism clinicians in response to anti-Black racism. Autism. 2022; 26(4):988–994.

26.

Turcotte

, Shea

, Mandell

. School discipline, hospitalization, and police contact overlap among individuals with autism spectrum disorder. J Autism Dev Disord. 2018; 48(3):883–891.

27.

Tint

, Palucka

, Bradley

, Weiss

, Lunsky

. Emergency service experiences of adults with autism spectrum disorder without intellectual disability. Autism. 2019; 23(3):792–795.

28.

Jones

. Missing and misdiagnosis on the autism spectrum: Potential consequences and implications for practice. Social Work & Social Sciences Review. 2016; 18(1).

29.

Taylor [@SocAwkGirl]. For those who had gotten diagnosed with something else before they were diagnosed with #Autism. What was it that you were diagnosed prior? For me: 1. Oppositional Defiant Disorder 2. ADHD (Combined) 3. Anxiety 4. Depression 5. Certain learning disability #ActuallyAutistic [Tweet]. 2022. Twitter. https://twitter.com/SocAwkGirl/status/1578816291607281666

30.

Anderson

. Autistic experiences of applied behavior analysis. Autism. 2023; 27(3):737–750; doi: 10.1177/13623613221118216

31.

Kupferstein

. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. AIA. 2018; 4(1):19–29.

32.

McGill

, Robinson

. “Recalling hidden harms”: Autistic experiences of childhood Applied Behavioural Analysis (ABA). AIA. 2021; 7(4):269–282.

33.

Sandoval-Norton

, Shkedy

. How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology. 2019; 6(1):1641258.

34.

Wilkenfeld

, McCarthy

. Ethical concerns with applied behavior analysis for autism spectrum” disorder. Kennedy Inst Ethics J. 2020; 30(1):31–69.

35.

Vohra

, Madhavan

, Sambamoorthi

. Emergency department use among adults with autism spectrum disorders (ASD). J Autism Dev Disord. 2016; 46(4):1441–1454.

36.

Lindsay

, Osten

, Rezai

, Bui

. Disclosure and workplace accommodations for people with autism: A systematic review. Disabil Rehabil. 2021; 43(5):597–610.

37.

Romualdez

, Heasman

, Walker

, Davies

, Remington

. “People might understand me better”: Diagnostic disclosure experiences of autistic individuals in the workplace. Autism in Adulthood. 2021; 3(2):157–167.

38.

Gotham

, Marvin

, Taylor

, et al. Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism. 2015; 19(7):794–804.

39.

Anderson

, Butt

. Young adults on the autism spectrum at college: Successes and stumbling blocks. J Autism Dev Disord. 2017; 47(10):3029–3039.

40.

US Department of Education . Individuals with Disabilities Education Act of 2004, 34 CFR § 300.8. Available from: https://sites.ed.gov/idea/regs/b/a/300.8/a [Last accessed: June 3, 2024].

41.

Roux

, Shattuck

, Rast

, et al. Characteristics of two-year college students on the autism spectrum and their support services experiences. Autism Res Treat. 2015; 2015:391693.

42.

Pinder-Amaker

. Identifying the unmet needs of college students on the autism spectrum. Harv Rev Psychiatry. 2014; 22(2):125–137.

43.

VanBergeijk

, Klin

, Volkmar

. Supporting more able students on the autism spectrum: College and beyond. J Autism Dev Disord. 2008; 38(7):1359–1370.

44.

Fulton

, Reardon

, Kate

, Jones

. Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC. 2020.

45.

Crane

, Goddard

, Pring

. Sensory processing in adults with autism spectrum disorders. Autism. 2009; 13(3):215–228; doi: 10.1177/1362361309103794

46.

Scheerer

, Pourtousi

, Yang

, et al. Transdiagnostic patterns of sensory processing in autism and ADHD. J autism develop disorders. 2024; 54(1):280–292.

47.

Jeanneret

, Courcy

, Caron

, et al. Discrimination and victimization as mediators between social support and psychological distress in autistic adults. Res Autism Spectrum Disorders. 2022; 98:102038.

48.

Maroney

, Horne

. “Tuned into a different channel”: Autistic transgender adults’ experiences of intersectional stigma. J Couns Psychol. 2022; 69(6):761–774; doi: 10.1037/cou0000639

49.

Han

, Scior

, Avramides

, Crane

. A systematic review on autistic people’s experiences of stigma and coping strategies. Autism Res. 2022; 15(1):12–26.

50.

Turnock

, Langley

, Jones

. Understanding stigma in autism: a narrative review and theoretical model. Autism in Adulthood. 2022; 4(1):76–91.

51.

Pearson

, Rose

. A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism Adulthood. 2021; 3(1):52–60.

52.

Botha

, Frost

. Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health. 2020; 10(1):20–34; doi: 10.1177/2156869318804297

53.

Botha

, Dibb

, Frost

. “Autism is me”: an investigation of how autistic individuals make sense of autism and stigma. Disability & Society. 2022; 37(3):427–453.

54.

Perry

, Mandy

, Hull

, Cage

. Understanding camouflaging as a response to autism-related stigma: A social identity theory approach. Journal of autism and developmental disorders. 2022; 52(2):800–810.

55.

Bradley

, Shaw

, Baron-Cohen

, Cassidy

. Autistic adults’ experiences of camouflaging and its perceived impact on mental health. Autism Adulthood. 2021; 3(4):320–329; doi: 10.1089/aut.2020.0071

56.

Centers for Disease Control and Prevention. Infographic: 6 Guiding Principles to a Trauma-Informed Approach. Centers for Disease Control and Prevention (U.S.). Available from: https://stacks.cdc.gov/view/cdc/56843 [Last accessed: June 3, 2024].

57.

Ng-Cordell

, Rai

, Peracha

, et al. A qualitative study of self and caregiver perspectives on how autistic individuals cope with trauma. Front Psychiatry. 2022; 13:825008; doi: 10.3389/fpsyt.2022.825008

58.

Joyce

, Honey

, Leekam

, Barrett

, Rodgers

. Anxiety, intolerance of uncertainty and restricted and repetitive behaviour: Insights directly from young people with ASD. J Autism Dev Disord. 2017; 47(12):3789–3802; doi: 10.1007/s10803-017-3027-2

59.

Kapp

, Steward

, Crane

, et al. ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism. 2019; 23(7):1782–1792; doi: 10.1177/1362361319829628

60.

Langenfeld

, Kroupina

, Palmer

, Gustafson

, Augustyn

. Importance of trauma-informed practice in evaluation of children diagnosed with autism spectrum disorder. J Dev Behav Pediatr. 2021; 42(8):690–693; doi: 10.1097/DBP.0000000000000999

61.

Buckner

, Yarbrough

. Trauma-informed care in support of autism. In: Understanding Parent Experiences and Supporting Autistic Children in the K-12 School System. IGI Global; 2022:pp. 126–137. doi:10.4018/978-1-7998-7732-5.ch009

62.

Pukki

, Bettin

, Outlaw

, et al. Autistic perspectives on the future of clinical autism research. Autism Adulthood. 2022; 4(2):93–101; doi: 10.1089/aut.2022.0017

63.

Hunter

. Providing Trauma Informed Care to Autistic Adults. Available from: https://traumainformedoregon.org/tic-resources/providing-trauma-informed-care-to-autistic-adults/ [Last accessed: June 3, 2024].

64.

Nicolaidis

, Raymaker

, McDonald

, et al. Creating accessible survey instruments for use with autistic adults and people with intellectual disability: Lessons learned and recommendations. Autism Adulthood. 2020; 2(1):61–76; doi: 10.1089/aut.2019.0074