“The World’s Really Not Set Up for the Neurodivergent Person”: Understanding Emotion Dysregulation from the Perspective of Autistic Adults

Abstract

Background:

Emotion dysregulation is associated with mental health challenges and suicidality in autistic adults. Little is known about how emotion dysregulation manifests in adulthood and whether current services adequately support their needs. We explored autistic adults’ experiences of emotion dysregulation and identified key contributors to emotion dysregulation to inform future service development.

Methods:

We performed qualitative semi-structured interviews with autistic adults, in which they shared emotion dysregulation stories. Three researchers developed the codebook using a consensus approach, coded interviews, and completed thematic analyses. Autistic adults were part of our study team and involved at every step.

Results:

Fifteen autistic adults participated in the interviews. Emotion dysregulation was described in the context of a pervasive lack of control in various settings, most often experienced in health care settings. Limited awareness of internal states (i.e., emotions, sensory) until it was too late was a prominent theme. Many participants described emotion dysregulation as indistinguishable from sensory overload. Interpersonal conflict, largely social rejection because of being misunderstood by a neurotypical person, contributed to difficulty regulating emotions and low perception of self-worth. Participants described feeling powerless in health care settings and workplaces, where they experienced disproportionate and inappropriate responses to their emotion dysregulation, including involuntary sedation, termination of care, and job loss. Most participants described a lack of safety and supports for adaptively coping with emotion dysregulation, leading to tension between the personal costs of masking and the societal consequences of not masking.

Conclusions:

Autistic adults attributed their emotion dysregulation to a lack of control across all contexts. It is important for autistic adults to develop emotion regulation skills, but more work is needed to understand and remediate the impact of social marginalization on autistic adults, as this directly contributed to instances of dysregulation.

Community Brief

Why is this an important issue?

Problems with emotion dysregulation are associated with mental health challenges and suicidality in autistic adults. Yet, scientists lack the understanding of what emotion dysregulation looks like in the lives of autistic adults. We have not yet asked autistic adults what causes emotion dysregulation from their perspective.

What was the purpose of this study?

The purpose of this study was to hear autistic adult perspectives of their experiences of emotion dysregulation. We hoped to learn identify unique factors impacting autistic people in adulthood that may require new and different supports than those developed for autistic children.

What did the researchers do?

We conducted interviews with 15 autistic adults. We asked them to share stories of recent instances of emotion dysregulation. We asked the participants to share what caused the dysregulation, what they did when dysregulated, and to describe consequences of the emotion dysregulation. We looked for common themes in their answers. 

What were the results of the study?

Participants told us that their emotion dysregulation often resulted from not having control over aspects of their life in multiple ways. We learned that sensory sensitivities contributed to emotion dysregulation, and it was difficult to recognize emotions. Every participant told a story about becoming emotionally dysregulated after being misunderstood by a neurotypical person, such as a family member, friend, or coworker. Many also described how neurotypical people responded to their dysregulation by threatening serious consequences. Autistic adults also told stories about feeling powerless in health care settings and workplaces. They felt unsafe in these settings and experienced unjust responses to their emotion dysregulation, such as involuntary sedation, removal of care, and loss of their job. Many participants coped with the lack of safety by masking, and they reflected on the personal costs of masking. They shared unmet needs for better emotion dysregulation support, including access to safe places and people, connection with other autistic people, self-acceptance, and broader societal acceptance of autistic people.

What do these findings add to what was already known?

This study is the first to study autistic adults’ own perception of their emotion dysregulation and the key role of that feeling marginalized has on emotion dysregulation. Our findings suggest that emotion dysregulation in autistic adults can be triggered by environmental stressors that are out of their control. The consequences of emotion dysregulation can be severe across social, employment, and health care settings.

What are potential weaknesses in the study?

The sample did not include autistic people with severe intellectual disability or those who relied on forms of communication other than speech.

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

Our findings suggest the need for autism researchers and clinicians to support autistic adults beyond individual mental health treatments. It is important to focus on promoting wider acceptance of autism in society. We also need to focus on ensuring the emotional safety of autistic people in health care and employment settings.

Background

Mental health problems are among the most salient contributors to quality of life in autistic adults. ¹ Autistic adults have disproportionately high rates of mental health problems compared with non-autistic peers. A recent analysis of Medicaid claims data reported prevalence rates for psychiatric diagnoses that were 2–10 times higher for autistic adults than for non-autistic adults, depending on the diagnosis. ² Emerging statistics regarding suicide in autism are alarming,^3–5 with estimates that 15.3% of autistic people have attempted suicide and 37.2% have experienced suicidal ideation. ⁶ Studies of clinically referred autistic adults indicate very high rates of lifetime diagnoses with most meeting criteria for multiple psychiatric disorders (i.e., mean of six diagnoses, most commonly anxiety, depression, and bipolar disorder) ⁷ and experiencing serious transdiagnostic difficulties, such as suicidality, self-injurious behavior, and irritability, that inhibit their ability to thrive.^8,9

Efforts to understand poor mental health in autistic adults have only recently begun to explore unique stressors experienced in adulthood. Although there are documented mental health challenges among autistic youth,^10–12 the dramatic drop-off in supportive services in adulthood and different societal pressures may present unique challenges. ¹³ Autistic adults experience substantial barriers to maintaining independence and employment.^9,14 Burgeoning research suggests that autistic adults use masking (i.e., hiding autistic traits and behaviors to engage with others in a way that meets neurotypical societal expectations) as a coping response to meet these demands.^15–17 The inability to meet societal pressures and the burden of trying to appear neurotypical have been linked to higher rates of depression and suicidality.^5,18–20

Emotion dysregulation, defined as difficulty monitoring and modifying emotional reactivity and sustained negative emotion, is common, and often more severe, among autistic people. ²¹ Challenges with emotion regulation are evident early on,^22,23 as autistic youth are two to four times more likely than non-autistic people to experience clinically elevated emotion dysregulation. ²¹ More severe emotion dysregulation is associated with psychotropic medication use, psychiatric hospitalization, and emergency service use, even after accounting for many other variables, such as age, gender, and co-occurring intellectual disability, psychiatric symptoms, and behaviors, including aggression and suicidal thoughts and behaviors.^24,25 Emotion dysregulation is likely a fundamental mechanism underlying mental health symptoms in autistic people.^21,25–27

A growing body of literature examines contributors to emotion dysregulation in autism, although most studies have focused on youth. ²³ Some evidence suggests that autistic people may be predisposed to emotion dysregulation because of individual differences in cognition (executive functioning, abstraction, self-awareness), difficulty with change and uncertainty, and neurobiological processes (arousal and neural circuitry).^27,28 Differences in emotion processing and expression, such as alexithymia, may also contribute to increased likelihood and severity of emotion dysregulation in children and youth. ²⁷ Little is known about how emotion dysregulation is experienced by autistic adults or how adult needs, demands, and environmental stressors contribute to emotion dysregulation. More work is needed to understand how lived experiences of autistic adults living in a neuronormative social world impact emotion dysregulation.

The current study examined autistic adults’ experiences of emotion dysregulation as a precursor to refining existing evidence-based emotion dysregulation interventions for autistic adults. We used qualitative methods to analyze stories of emotion dysregulation in autistic adults’ daily lives from the perspective of autistic adults. Whereas prior research has focused more on individual processes impacting emotion dysregulation in autistic people,^23,28 this study sought to build on that work by centering lived experiences of emotion dysregulation to identify unique factors impacting adulthood that may necessitate new and different supports than those developed for autistic youth.

Methods

Methodological approach

This study was approved by the University of Pittsburgh Institutional Review Board (STUDY21050162). This project used a qualitative design, using semi-structured interviews and an inductive approach to code and analyze the data. We chose a qualitative descriptive approach ²⁹ to perform thematic analysis ³⁰ on in-depth semi-structured interviews to gain a deeper understanding of the emotion dysregulation among autistic adults through their narratives, perceptions, and feelings about their own lived experiences. ³¹ We chose a qualitative descriptive approach to center the data collection and analyses with the words of our participant rather than in terms of any specific conceptual or philosophical framework. ²⁹ Using qualitative interviews, we focused on our participants’ voices and stories and intentionally avoided imposing our own assumptions and limitations upon their responses. The study also used participatory methods with the Pittsburgh Adult Autism Research Community Collaborative (PAARCC), a community-based participatory research group composed of autistic people, academic researchers, family members, and clinicians, many of whom identify in more than one of those roles. PAARCC members were involved in the interpretation of the analyses. This project launched before PAARCC was formed. Therefore, community members did not partner in the initial design of the study. PAARCC members participated in four meetings about this project over the course of 2 years: (1) In the first meeting, the project goals and aims were presented and members identified recruitment goals (i.e., oversampling for women and people in communities of color). In the second meeting associated with the project, PAARCC members cocreated the informed consent forms for this project. Members contributed to interpreting the findings in the third and fourth meetings. In Meeting 3, the research team presented the preliminary theme of a pervasive lack of control; members suggested several other areas to further explore, such as masking. In Meeting 4, PAARCC members reviewed the final themes and findings and provided input on aspects to highlight for dissemination and further research.

Data sources

Participants were recruited using purposive sampling, ³² in which the study team recruited autistic adults with experiences with emotion dysregulation and mental health concerns. We also identified subcategories to prioritize in recruitment. We prioritized the recruitment of women and Black participants, as they are generally underrepresented in autism research. ³³ We used established partnerships with community and professional organizations to access diagnosed autistic adults who experience emotion dysregulation. Participants were U.S. residents, 18 years and older, who reported having received a professional autism diagnosis (e.g., Autism Spectrum Disorder, Asperger’s disorder, pervasive developmental disorder), reported having difficulty managing their emotions, and were able to independently consent and answer questions in the interview without a support person. This last inclusion criterion was designed so that the study would explore autistic adults’ lived experiences from their point of view. In another study, we interviewed support people of autistic adults with co-occurring intellectual disability who were not able to complete an interview. As adults are so understudied, we intentionally chose an inclusive age range of all adults (18 years and older) to guide future research in this area. Participants were screened into the study through a telephone call with a research assistant, provided informed consent, and then completed an interview either virtually or in person. Participants were recruited until interviewers identified a redundancy in the data among emotion dysregulation stories that participants shared (n = 15). ³⁴

Procedures

Participants completed a brief demographic survey before their interview. Interviews were conducted by mental health professionals with a doctorate in clinical psychology, counseling, or social work and who had extensive experience working with autistic people and training in qualitative interviewing. Interview questions were developed with an autistic research team member. Interviewers started the interview by probing for each participant’s individualized language to describe emotion dysregulation (e.g., “meltdown,” “overwhelm”). Interviewers then used that language to elicit accounts of emotion dysregulation episodes. Follow-up questions and probes were used to solicit more details to better understand contributors to the dysregulation, signs of dysregulation, management strategies, and others’ responses. Example questions included, “Tell me a story about a recent time that you were [experiencing emotion dysregulation]” and “how do other people react when you are [experiencing emotion dysregulation].” Interviews were 45–90 minutes in duration, with most lasting 1 hour.

Data analysis

Following each interview, all interviewers completed memos to document initial impressions, interpretations, and further questions. We used NVivo auto-transcription to convert interview audio recordings into text transcripts. The team of transcribers reviewed each generated transcript a total of three times to correct for accuracy and deidentify the interview. All transcribers also completed memos on any apparent themes and impressions in each interview. The team discussed recurrent themes, challenges, and impressions at weekly meetings, which led to iterative changes to the interview protocol to optimize strategies to allow participants to share and describe their feelings and reflections. Traditional open-ended qualitative interviewing style was restructured to give more concrete anchors to better support participant responses. For example, “How do other people react to your emotion dysregulation?” was modified to have anchors for each setting (e.g., work, home) to “How do other people [at work] react to your emotion dysregulation?” These discussions also guided subsequent sampling to ensure inclusion of diverse perspectives. For example, masking was a key focus in the first two interviews, but the guide did not ask specifically about masking. In response, we added the question, “Do you feel like you have to work hard to stay in control of your emotions when you are in a social setting compared to when you are alone?” All participants were given pseudonyms for confidentiality.

Three coders, including one autistic adult, inductively generated the codebook using a consensus approach. Guided by research questions and memos, the coding team started by open coding the same interview independently. The coding team then met to discuss and synthesize their respective codes. Next, the coding team independently read the same transcript again and coded the interview using the list of discrete codes that they collaboratively generated. Coders met frequently to discuss discrepancies and add, combine, and edit codes as needed. Discrepancies were resolved by describing each coder’s understanding of the text and discussing until codes were added or revised to fit consensus interpretation of the interview text. This process was repeated until the coding team reliably coded a novel interview without adding new codes or making changes to existing codes. ³⁴ The team needed five interviews to generate and finalize the codebook without adding new or changing existing codes. Throughout this process, the coding team presented the codebook to the larger research team and consulted with a qualitative expert for further discussion and refinement. After the codebook was finalized, remaining interviews (n = 10) were divided among the three coders, and any uncertainties were resolved by group consensus at weekly meetings. We used NVivo 12, 14, and 1.0 to code the data.

The lead author reviewed and analyzed all the data to identify relationships and patterns among the codes. Themes and subtheme findings were identified. These were brought to the entire research team, and then subsequently were interpreted by community members of the PAARCC team in two monthly meetings. In these review sessions, all team and community members expressed that the findings corroborated with their understanding of and experience with autistic adults who have experienced challenges with emotional dysregulation.

Results

Fifteen autistic adults, aged 19–68, identifying as women (n = 7; 46.7%), men (n = 7; 46.7%), non-binary/nonconforming (n = 1; 6.6%), Black or African American (n = 5; 33.4%), non-Hispanic White (n = 9; 60%), and Hispanic White (n = 1; 6.6%) participated in the interviews. Census data of Pittsburgh reflect population demographics of 65% non-Hispanic White, 22% Black or African American, and 3.5% Hispanic, suggesting that efforts to oversample for women and Black and African American participants were successful for this area. Age of autism diagnosis ranged from 2 to 53, with 53% (n = 8) receiving childhood autism diagnosis and 47% (n = 7) receiving an autism diagnosis in adulthood. Sixty percent of the sample reported that the highest level of education they had achieved was high school or less, and ∼40% reported working either part-time (n = 4) or full-time (n = 2). Most of the sample lived with a parent or other relative. Table 1 details sociodemographic factors of the study sample.

Table 1.

Demographics

Part #**	Age	Dx age	Gender	Race/ethnicity	Education	Employment	Living
1	32	31	Non-binary	Black/Hispanic	Associate’s	Student	Live w/ partner
2	31	28	Woman	Black/non-Hispanic	High school	Part-time	Live w/ relative
3	29	12	Woman	White/non-Hispanic	Bachelor’s	Part-time	Live alone
4	26	2	Woman	White/non-Hispanic	Associate’s	Part-time	Live w/ relative
5	42	30	Woman	White/non-Hispanic	Graduate degree	No	Live alone
6	60	53	Woman	White/non-Hispanic	Bachelor’s	No	Home owner
7	22	21	Woman	White/non-Hispanic	Bachelor’s	Part-time	Live w/ relative
8	38	31	Woman	White/non-Hispanic	Bachelor’s	Full-time	Live w/ relative
9	24	6	Man	Black/non-Hispanic	High school	No	Live w/ relative
10	19	*	Man	Black/non-Hispanic	High school	No	Live alone
11	20	12	Man	Black/non-Hispanic	High school	Student	Dorm
12	21	5	Man	White/Hispanic	High school	Student	Live w/ relative
13	50	13	Man	White/non-Hispanic	Bachelor’s	Full-time	Live w/ relative
14	26	5	Man	White/non-Hispanic	Graduate degree	Student	Dorm
15	68	36	Man	White/non-Hispanic	<; High school	No	Group home

*Did not know age of diagnosis but stated childhood.

**Participant numbers in this table were assigned for this article alone to ensure anonymity.

Characteristics of emotion dysregulation were analyzed first to establish the preliminary context for the main findings. Participants used the names such as “meltdown,” “overwhelm,” “panic attack,” and “outburst” to describe their dysregulation. Less than half of the sample (n = 6; 40%) specified the length of their emotion dysregulation, including “days” (n = 2), “hours” (n = 2), and “10–30 minutes” (n = 2). Notably, many of the participants (n = 12) described emotion dysregulation where emotional reactivity (i.e., high arousal and negative emotions characterized by irritability and anger) ²⁴ exceeded their capacity to manage. Forty percent of the sample (n = 6) reported a suicide attempt, physical aggression, or nonsuicidal self-harm during episodes of emotion dysregulation. Three participants described stories of dysregulation where participants experienced involuntary “shutdowns” characterized by the inability to feel, speak, or move ³⁵ until more regulated. Six participants experienced a combination of emotional reactivity and involuntary shutdown (these characteristics of emotion dysregulation are not mutually exclusive).

We then analyzed the locations where emotion dysregulation occurred in each story. Health care settings, including psychiatric hospitals, outpatient mental health clinics, and dental offices, were the most referenced location for emotion dysregulation (mentioned by six participants). Participants discussed communication barriers with their providers, lack of sufficient time to process new information, pressure to make major medical decisions in the moment, sensory triggers, and difficulty scheduling and traveling to appointments. These challenges led to emotion dysregulation during appointments, and few participants had a family member or support person to assist, despite the theme that a safe support person would be helpful. The second most common location for instances of emotion dysregulation was the place of employment (mentioned by five participants), followed by the grocery store (mentioned by two participants).

Thematic analyses illuminated five key contributors to emotion dysregulation stemming from a pervasive lack of control in all contexts of life. These contributors include the following: (1) limited awareness of internal states, (2) low self-worth, (3) social rejection, (4) discrimination, and (5) lack of safety to promote adaptive coping. Key themes are illustrated in Table 2. Unmet sensory needs were a common subtheme across four of these contributors.

Table 2.

Contributors to Emotion Dysregulation, Themes, and Subthemes

Main theme	Subtheme
1. Limited awareness	Too much, too late
	Sensory overload
2. Low self-worth	Isolation
	Traumatic invalidation
	Challenges maintaining employment
3. Social rejection	Misunderstood by non-autistic people
	Intolerance of autistic differences
4. Discrimination	Lack of power
	Unjust responses
5. Lack of safety to promote coping	Need for safe person
	Need for safe place
	Masking

Theme 1: Limited awareness

Participants described limited awareness of internal states (i.e., emotions, sensory needs). Most of the sample (n = 11; 73%) described a lack of awareness and insight into their emotions until it was “too late” or “already happening.” For example, Participant 4 responded that they knew dysregulation was occurring when “I was running down the hall after him [my boss].” Most participants described a general agitation (emotional and sensory) that was present throughout the day leading up to a “meltdown.” The act of masking autistic traits and emotions all day appeared to make it even harder to notice increasing emotional reactivity until it was “too late” for these participants.

Nearly all participants explained that failure to notice strong emotions until it was “too late” made it harder to manage. Participant 3 described this challenge: “when it gets to that point, it’s like duck and take cover, basically. Not literally, but conceptually, because it’s just so intense that it’s like screaming inside your brain without it, like having a sound to scream, it’s conceptually screaming.” Another participant described that coping was not possible once she was in “meltdown mode”: “[I] have to ride the meltdown wave, so to speak, until it ends. That’s the only way I’ll calm down when that happens, like no matter what I do to try to stop or calm myself or distract myself from those upsetting emotions, I just can’t hold it in.”

Another prominent subtheme was that sensory overload felt indistinguishable from emotion dysregulation, which further impeded awareness of building emotions. Many participants’ (33%) stories of emotion dysregulation included details of sensory sensitivities. Participant 3 explained this challenge: “it’s hard to differentiate when you’re feeling an emotion and when you’re feeling sensory overload, and that causes you to feel an emotion. […] I’m still like not always aware of when I need to make sensory changes or not always aware of my senses are causing me to feel aggravated or tired or irritable, or just like upset in general and stuff. And so emotions are complicated.” Difficulty noticing sensory overload and emotion dysregulation was mentioned in the context of public places such as the workplace, public transportation, and health care settings.

Theme 2: Low self-worth

The second main theme was low self-worth, which was both a contributor to emotion dysregulation and a response to chronic marginalization. Nearly half of the sample (n = 7, 47%; with 5 identifying as men) described poor self-esteem both generally and related to managing emotion dysregulation. Participants who highlighted poor self-worth tended to describe dysphoric emotion dysregulation presentations (i.e., internalizing presentation of chronic unease, lower arousal, and negative valence). ²⁴ Two subthemes emerged under low self-worth, including traumatic invalidation and challenges maintaining employment. Participants tended to share stories of invalidation about their autistic traits and sensory needs that began very early in life and continued today, ultimately impacting self-esteem. Seven participants shared instances where others responded to their emotion dysregulation with invalidating comments, such as “If you’re going to have a panic attack go outside,” or “maybe you’re just making it up or you’re just doing this because you are reading it [about autism].” Participant 9 shared that a lifetime of invalidation has led to severe depression and low self-worth:

I want them to know how cripplingly lonely I am. And I have a fear that I would never find someone who would show me truly, unconditional love. Because I have been denied that my entire life. All I have known was gaslighting, lies, hatred, and physical and psychological abuse. That’s all I’ve ever known. I just want to know that there was someone, just anyone who would show me just a true, truly caring feeling that just escape the darkness.

Unemployment and underemployment were frequently referenced as a personal deficit or in the context of low self-worth (n = 5; 33%). Participant 3 described this in her interview, stating, “I’m not going to be able to hold a job. I’m not going to do well at this job. I’m not going to be able to feed myself. I’m going to be tired all the time.” Challenges maintaining employment were a major stressor for participants (n = 6; 40%). Several participants had difficulty maintaining a job because of emotion dysregulation, and others indicated that they work part-time or less to reduce the frequency of dysregulation.

Theme 3: Social rejection

Analyses identified social rejection as a third major contributor to emotion dysregulation. A total of 86% of the sample described emotion dysregulation in response to social rejections. Participant 9 shared low mood stemming from rejection from loved ones: “They either don’t understand me, or they just cannot handle it.” Of those 13, 10 participants shared feelings of depression and profound loneliness. These individuals shared hopelessness that they would ever establish relationships, as all of the instances of social rejections were related to misunderstandings or their differences from non-autistic people. For example, Participant 1 explained coping with misunderstandings by isolating herself, “sometimes being understood is not as important as getting over this situation […] so I have as little of contact with people as possible.”

Within stories of social rejection, two subthemes emerged: being misunderstood by a non-autistic family member, friend, or colleague and others’ intolerance of autistic differences. Differing interpretations of rules and concrete interpretations of phrasing were common points of misunderstanding between autistic participants and non-autistic people. For example, Participant 2 described an altercation at work where another employee took one of the supplies she was using for her shift while she was in the bathroom: “I understand that the handhelds and printers are the store property. […] What made it worse was he thought that I thought it was my property, but it wasn’t. My whole point was I don’t think it’s right to just touch people’s stuff move it just because it’s sitting there.” Autistic participants described the lack of reciprocal effort of non-autistic people to understand their differing perspective, leading to social rejection. Participant 5 describes the emotional impact of this lack of reciprocity, “You’re hurt and people don’t try to understand things from your perspective. It’s like you’re expected to understand things from their perspective, but there’s no effort on the other person’s part.”

Theme 4: Discrimination

Every participant we interviewed shared a story reflecting lack of power and treatment as a person with lower social status, often with overt instances of discrimination and social marginalization. Participants described numerous examples of daily interpersonal and systemic discrimination across their lifetime. Stories spanned instances of discrimination, threats, and injustice from police, transportation workers, health care workers, bosses, and strangers in the community. Participants reflected often that displaying autistic traits led to many of these instances. These stories highlighted the mismatch of autistic needs and traits living in a society designed for non-autistic people. Invalidation and lack of consideration for sensory differences were a key subtheme in stories of discrimination and contributed to a lack of safety. Participant 6 was physically removed from public transportation on her way to a health care appointment because of her response to a sensory trigger:

The problem is the world’s really not set up for the neurodivergent person. Like the time I was on the bus and […] I’m more sensitive than others so I screamed out in pain. Some little nervous old man got all upset and told the bus driver I was aggravating him, and the bus driver threatened to have me arrested. Because I screamed out in pain. If public transportation workers and the police and all the people that work with the public could be more aware of neurodivergent people and that we’re different. And we don’t mean to harm anybody and treat us better. […] That it’s not meant as a harmful thing or a on purpose thing, it’s just how we behave.

Participant 6’s story highlights that her response to sensory triggers competed with other people’s needs (i.e., other gentleman) while using public transportation. Many stories across participants included instances of displaying autistic behaviors, such as stims, sensory overload, or not following social norms in public. Others responded to these instances with severe consequences by people in positions of power. Consequences included removal from postsecondary education (n = 2), sedated or hospitalized against will (n = 3), loss of job (n = 5), and removal from health care services (n = 3). Participant 5 was threatened that she would be removed from mental health care: “How are you threatening to suspend me from a mental health treatment program? It makes no sense because I’m not well enough. You would suspend me from a treatment program because I’m not well enough? That makes no sense.” This participant had strong insight into this injustice and noted the limitations of individual-level intervention for autistic people, given the ongoing discrimination and marginalization they face, stating, “Therapy can’t fix that, if you’re getting discriminated against.”

Theme 5: Lack of safety to promote adaptive coping

Lack of safety to promote adaptive coping was the most prominent theme in this study, referenced by 86% of participants (n = 13). Interviews suggested that participants both needed safety and did not feel that they had safety in many settings. Coping subthemes emerged of the need for a safe place, need for a safe person, and the use of masking. Participants shared the importance of a “safe person” in their life to help manage stressors contributing to dysregulation and to help support during dysregulation. Participant 9 explained, “I just have no one, I have no one else in my life to talk to outside my therapist.” Similarly, adults described the need for a “safe place” to go in difficult settings (e.g., workplace, health care, home) where they could unmask to regulate their emotions safely. Participants cited makeshift “safe places” that use to stim and regulate emotions in neurotypical places, such as the bathroom, sitting outside the police station, library, empty closet at work, or any small and quiet room. Participant 7 expressed concern for the lack of safe places that autistic people can go to, given the misinterpretation of autistic traits on behaviors:

I worry so much about autistic people; the way that people see our behavior and don't see our emotions. It’s so sad to me. I think it’s important to teach them where they can go if they feel overwhelmed. I don't know exactly specifically how to explain when you might feel out of control, or how to prevent it. But like where to go if you do feel overwhelmed.

Twelve participants (80%) described the distress associated with masking their autistic traits and emotional reactions to fit into neurotypical norms. Participants shared numerous accounts of the extent to which they felt they had to mask in their day-to-day life and the personal costs of doing so. The cognitive load of navigating employment and other social interactions in neurotypical spaces, combined with fatigue from making decisions on disclosure and unmasking, was commonly shared across participants in this study. Participant 14 described the inability to unmask around any other person:

I think it might have to do with the fact that when I’m around people no matter how close I am to the person or how comfortable I’m with the person, that it’s always a high level of masking or conformity to whatever the situation is. So, it’s just exhausting, I think, and trying to mentally regroup or … it’s just hard to do around people.

Many described the tension between the personal costs of masking and the societal consequences of not masking. The inability to keep masking led to social rejection–triggered emotion dysregulation and serious consequences. Decisions about disclosing autism diagnoses and the need to mask were intertwined, as many participants did not disclose their autism diagnosis and attempted to hide autistic traits at work. Nearly all of these stories resulted in the inability to keep up masking and then consequences followed. Participant 3 described this in the workplace:

I had one time I was at a work meeting over Zoom, and I was just getting so overwhelmed, and I hadn’t exposed that I’m autistic, and so I was getting really frustrated and I could tell that she was getting frustrated. And then at one point I blurted out, “I’m autistic!” And then I was like, “I got to go, I'm really overwhelmed, I'm sorry” […] I ended up losing that job.

Discussion

This study is the first to evaluate the perspectives of autistic adults on what factors contribute most to emotion dysregulation in their lives. Our study found that emotion dysregulation is a key challenge among autistic adults and is often prompted by factors outside of their control. Emotion dysregulation is often met with serious consequences, such as termination of employment, removal of services, and loss of friendships. These findings build on research establishing emotion dysregulation as a key mechanism for mental health problems and suicidality among autistic adults ²⁵ and suggest that emotion dysregulation may have additional adverse impacts on critical areas of adult life, such as health care and employment. This work reinforces that emotion dysregulation underlies a range of challenges in adult living.

Much of the existing research in emotion dysregulation, including our own, has focused on helping autistic individuals increase awareness, build distress tolerance, and learn adaptive self-regulation skills.^{23,24,28,36,37} Our study similarly found that a lack of awareness of internal states is a challenge for autistic adults, as expected. Our results also suggest that, for some, emotion dysregulation and sensory overload may be difficult to distinguish, warranting further exploration in subsequent work. The prominent role of systemic barriers in episodes of emotion dysregulation was novel. The original purpose of this study was to confirm that our work on emotion dysregulation in autistic youth would be applicable to autistic adults, as a precursor to mental health service development. ²³ We thought that by better understanding the specific needs of autistic people in adulthood, we could adapt a skills-training intervention to be useful for adults.^23,28,36,37 Instead, we found that systemic barriers impacting autistic adults are key drivers of emotion dysregulation, suggesting that addressing individual-level processes of dysregulation is not sufficient. Rather, future work should also address the structural and systemic contributors to emotion dysregulation for autistic adults, which are a direct result of being a socially marginalized group.

In this small sample, emotion dysregulation occurred most often in or on the way to health care settings. Participants described instances where health care or public transportation professionals overreacted to their neurodivergent traits or needs. Participants described numerous examples of traumatic experiences of invalidation and feeling invalidated during psychiatric hospitalizations, dentist appointments, and other health care appointments. These situations caused emotion dysregulation, which often led to involuntary sedation and hospitalization. This sample overwhelmingly felt unsafe in health care settings. These findings are consistent with the growing body of literature documenting access barriers to health care and mental health care.^9,38–43

Themes of social rejection and low self-worth are consistent with existing literature. Isolation and poor self-esteem among autistic adults are well documented and are thought to contribute to high rates of depression and anxiety in autistic people.^44,45 Many social misunderstandings shared in this study reflected the double empathy problem, ⁴⁶ where differences in communication, interpretation, and social nuances between autistic and non-autistic people caused conflict. Yet, the consequences of these misunderstandings reflected lower power or social status of the autistic person. This highlights the need to interpret social rejection and its impact on mental health in the context of social marginalization. When interpreted in context with the other themes in this study, it is possible that the pervasive low self-worth could actually be internalized stigma from experiencing regular structural inequities and discrimination.^47,48 This will be important to distinguish in future work, as standard of care for low self-worth is focused on the individual with treatments such as cognitive behavioral therapy, and coping with marginalization and internalized stigma would require a different type of support.^49,50

The general lack of safe places and/or people to support adaptive coping is consistent with other seminal work on masking,^15,16,51 which others have clearly found to be a protective response to stigma and neurotypical social norms that is simultaneously necessary for survival but personally depleting.^15,18,52 Masking is thought to increase risk for suicidality and autistic burnout,^16,18,53 which participants in this study reported as well. Participants shared creative solutions to find makeshift safe places to cope with emotions, many using stimming, and “ride the meltdown wave.” This unmet need because of their stigmatized disability is further reinforcing the need for structural supports and considerations for autistic people.

Many of the findings of this study align closely with the minority stress theory. Meyer et al. developed it initially for the LGBTQIA+ population, ¹⁷ but it has been applied to other identities. ⁵⁴ Minority stress theory proposes that people from marginalized groups are exposed to excess social stress as a result of their stigmatized social status. ¹⁷ Our findings are consistent with many aspects of Meyer et al.’s minority stress theory, ¹⁷ which suggests that discrimination and prejudice influence internal processes of internalized stigma and concealment (i.e., hiding of self). Interestingly, emotion dysregulation is a mediator of minority stress processes and mental health in non-autistic populations, where emotion dysregulation explains the relationship between discrimination and poor mental health. ⁵⁵ Although our findings complement existing literature detailing the role of internal processes in emotion dysregulation (e.g., limited awareness, alexithymia, heightened reactivity), it is possible that individual-level processes of emotion dysregulation in autism are compounded by environmental stressors and chronic minority stress from marginalization.

There are several limitations in this study. Autism diagnoses and age of diagnosis were self-reported by participants, although participants were referred directly by mental health providers working with diagnosed autistic adults. Qualitative methods are useful to deepen our understanding of complex processes and constructs but cannot be generalized without further theory building, deductive work, and using multiple methods of assessment. In addition, our sample was limited to participants who could independently consent to and complete an interview. Although this included a few participants with high support needs (e.g., needing full-time care and support for safety and living), it did not include any adults with co-occurring intellectual disability or people who primarily rely on nonspeech communication. We used purposive oversampling of women and people of color, yet our sample included few people identifying as Hispanic or gender diverse. Our analysis did not specifically explore other compounding experiences of bias or discrimination such as sexism or racism. Thus, this study may not adequately reflect intersectionality with other forms of social marginalization. One PAARCC community partner questioned whether shutdowns are more common than suggested by our results. Qualitative studies do not allow for prevalence estimates of observed phenomena. In our sample, participants described a variety of emotion dysregulation presentations, including emotional reactivity (80%), involuntary shutdowns (20%), and a combination of reactivity and shutdowns (40%). These results suggest that all presentations of emotion dysregulation are relevant, but future population-based studies are needed to estimate the prevalence of different emotion dysregulation presentations. Longitudinal designs with better sampling for multiple marginalized identities may offer advantages to study trajectories of emotion dysregulation across the lifespan and identify specific age ranges where autistic people experience the most challenges and risk.

This study is the first empirical study, to our knowledge, that studied the contributors of emotion dysregulation from the lived experience of autistic adults. These in-depth interviews suggest implications for future research and clinical care. The role of minority stress and social marginalization in autistic adults’ lives warrants further exploration to understand and measure the impact of these adversities on autistic people. Clinical services and intervention development efforts may need to consider societal adversities and disparities when targeting poor mental health outcomes. Given the number of participants detailing examples from their youth, future work might also explore the impact of social marginalization on emotion dysregulation and mental health among autistic youth. The implications of emotion dysregulation in health care settings are important. Future efforts to train health practitioners, clinicians, staff, and administrators to address structural barriers within health care, employment, and public services (e.g., public transportation, police services) negatively impacting autistic adults are needed.

Authorship Confirmation Statement

K.B.B., C.A.M., D.L.M., S.W.W., and J.C.C. contributed to the study design. All the authors contributed to designing the semi-structured interview guides. K.B.B., K.T.M., C.M.C., K.E.B., and T.K. collected and extracted the data. K.B.B. conducted the data analysis and wrote the article. All the authors contributed to the data analysis and provided critical feedback. All the coauthors have contributed and approved this article before submission. This article has been submitted solely to this journal and is not published, in press, or submitted elsewhere.

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The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.