Autism in Adulthood

Disagreements about the neurodiversity movement have divided autistic people, their family members, and autism professionals. These include debates about whether the neurodiversity movement includes and represents the interests of autistic people who may have higher support needs, such as nonspeaking individuals and autistic people with intellectual disabilities. They also include debates about what goals autism interventions and supports should focus on.

The purpose of this study is to explore the views of autistic and autism community members (e.g., autistic people, family members, and professionals) on: •

the neurodiversity movement,

We explored whether these views are related to whether participants were autistic and/or had close relationships with autistic people with higher support needs.

We collected online survey responses from 504 autistic people, family members, and autism professionals. Participants shared whether they were close to nonspeaking autistic people or autistic people with intellectual disabilities. Participants answered questions about various intervention goals and their support for the neurodiversity movement and other models of disability.

Both autistic and non-autistic participants supported the neurodiversity movement and interventions that aim to change society, create supportive environments for autistic people, and promote well-being. Both autistic and non-autistic participants generally opposed interventions trying to make autistic people more normal, but autistic people were especially unlikely to support the goals of making autistic people normal. Autistic people were less enthusiastic about the goal of teaching “useful” skills and more strongly opposed to the medical model. Autistic people were more likely than non-autistic people to support the neurodiversity movement, reforming society and creating better environments for autistic people, but these differences were not large. Participants close to autistic people with intellectual disabilities supported teaching useful skills slightly more than those not close.

These findings further our understanding of the perspectives of autistic and autism community members on neurodiversity, models of disability, and preferred intervention goals.

The participants in this study were mostly White women from North America and Europe. We obtained few responses from people who more strongly oppose the neurodiversity movement or from autistic individuals who have the highest support needs. This means that our findings do not represent all autistic and autism community members. Different participants may also have understood the idea of a “close relationship” differently.

These findings may be useful to autistic adults and other members of the autistic and autism communities who want to connect with others and advocate for autism intervention research that fits their shared goals. Results can help professionals to develop interventions that better match the goals of different members of the autistic and autism communities.

Autistic people are more likely to think about and die by suicide than non-autistic people. Understanding why autistic people experience suicidal thoughts and behaviors could help develop better suicide prevention strategies.

We wanted to examine how well an existing model for understanding suicide applies to autistic people. We explored the integrated motivational–volitional (IMV) model of suicide. This model suggests that feeling entrapped in an impossible situation with no escape route and feeling defeated by life increase the risk of experiencing suicidal thoughts in non-autistic people. We wanted to know whether feeling entrapped and defeated are also relevant for autistic people experiencing suicidal thoughts. We also wanted to observe whether the IMV model could be tailored to include experiences that are more relevant to autistic people. Therefore, we also looked at camouflaging, or masking autistic traits to fit in social situations, and intolerance of uncertainty as potential contributors to suicidal thoughts in autistic adults.

We recruited 374 autistic adults (aged 18–63 years) to complete online questionnaires measuring the feelings of defeat, entrapment, camouflaging, intolerance of uncertainty, and suicidal thoughts and behaviors.

Our results suggest that autistic adults who feel defeated also tend to feel entrapped and suicidal. These results support the IMV model in autistic adults. Autistic adults who reported high levels of camouflaging or intolerance of uncertainty were more likely to score highly on the measure of suicidal thoughts and behaviors. However, camouflaging and intolerance of uncertainty alone were not able to predict suicidal thoughts in autistic adults.

Our study is the first to explore this well-supported model of suicide in autistic adults. Our findings provide some insight into some of the reasons underpinning suicidality in autistic adults. This is important as lots of previous research has focused on what the problem is, that is, reporting rates of suicidal thoughts and behaviors. Our study also identifies a number of questions to pursue in future work and shows that it is important for researchers to include experiences that are relevant and important to autistic adults.

Data were collected at one time point, and therefore, it is not possible to comment on causal relationships across the information collected. We did not ask participants to confirm their diagnosis or complete an autism screening tool. This was driven by a wish to respect self-identification as well as in response to feedback on completing screening tools. The questionnaires we used were not all developed or tested for use in autistic groups. We did not measure socioeconomic status, which is commonly associated with suicide risk.

Understanding why autistic people are at risk of suicide is important for informing clinical approaches to care and support as well as informing suicide prevention strategies. This study expands the current understanding of suicide in autism and provides further avenues for future research to build upon and broaden the evidence base.

Research shows that autistic people experience loneliness more often than nonautistic adults. It also shows that sensory differences contribute to higher loneliness, and that both sensory differences and loneliness are related to poor mental health, such as anxiety and depression. However, we do not know if this is unique to autistic adults, or something that also occurs in nonautistic adults. There are also not many studies where autistic people themselves describe loneliness, and how they link their loneliness to sensory differences. Finding out about whether there are differences in autistic and nonautistic people regarding loneliness, and letting autistic people put their thoughts about loneliness into their own words is important to learn more about how we can start to tackle the high rates of loneliness in autistic adults.

Our goal was to ask autistic people how they experience loneliness, and to empirically test whether the links between sensory differences, loneliness, and anxiety and depression are present in autistic people only, or also in nonautistic people.

We conducted two separate studies. In Study A, we asked autistic and nonautistic adults to fill out questionnaires about their loneliness, how distressed they are by loneliness, anxiety, depression, and how they experience the sensory environment. In Study B, we asked eight autistic adults to speak with each other and nonautistic participants about their experiences with loneliness. We gave them some conversation starters and then looked for common themes that came up in the conversations.

In Study A, we found that autistic people were more distressed about being lonely, and had higher levels of loneliness, depression, anxiety, and sensory differences than nonautistic participants. However, in both groups, sensory differences were related to higher anxiety and depression, and loneliness was an important influence on this relationship. This finding was supported by Study B, where autistic participants described that they often struggle to make meaningful connections because their sensory sensitivities keep them from going out.

Our findings show in a scientific way that loneliness is just as bad for autistic as nonautistic people. We also find that sensory sensitivities might play a role in making autistic people lonelier.

Our study sample does not represent the entire autism spectrum. All our participants were able to speak and travel to the study venues with little support. Our study participants were also mostly White, and our study can, therefore, not speak about the experiences of autistic people across different ethnic groups.

We hope that our findings will support the idea that loneliness is indeed a distressing experience for autistic people, and that society as a whole recognizes the need to create welcoming sensory environments that help to overcome the disconnect that many autistic adults experience.

Qualitative research investigating the experiences of autistic people who identify as transgender and gender-expansive (TGE) ^* is limited. However, the overlap between autism and gender diversity is evident. Transgender and gender-expansive people often score higher on measures of autistic traits, and autistic people score higher on measures of gender dysphoric traits. The lack of qualitative research investigating this overlap needs to be addressed to understand how individuals navigate being an autistic transgender/gender-expansive (ATGE) adult.

We aimed at identifying the experiences and needs of an underserved community. The questions developed for this study aimed at capturing an understanding of the intersection of autism and gender diversity in adulthood, beyond gender dysphoria. ^† By focusing on the needs and preferences of ATGE adults within health care, this study aimed at informing future policy, research, and clinical practice.

We recruited 12 ATGE adults through social media. Participants answered questions about their experiences of being an ATGE adult through a semi-structured interview or an online open-ended survey. We then analyzed their interviews and identified patterns and themes in what they said. All the data was then combined to tell the story of this sample of ATGE adults.

The adults in this study said that exploring their gender identity as an autistic person was a different journey to neurotypical cisgender people. Some described how being autistic had led them to differences in understanding gender, and many participants described how being a part of two marginalized groups led to increased discrimination and invalidation. Despite this, participants described a strong desire to be their authentic selves regardless of societal expectations. Having access to friendships with ATGE peers was useful for reducing isolation and providing a safe outlet for discussion. These friendships were essential, as many spoke about their strained relationships with familial and romantic/intimate bonds. Participants described their frustration with the health care system when working with ATGE adults and expressed their desires for good health care.

The study adds to our understanding of the experiences of ATGE adults; in particular, the impact that being ATGE can have on intimate/romantic relationships. The ATGE adults also describe increased resilience against the effects of dual marginalization. Some participants also felt that their understanding of their gender identity was not impacted by being an autistic person.

A key weakness of this study was the lack of ethnic/racial diversity of the sample. The use of qualitative surveys could be considered a potential weakness. However, by offering participation through an online semi-structured interview or an online open-ended survey, this study promoted the inclusion of autistic adults in research.

Our findings show that it is important for medical providers and academics to listen to ATGE adults. Their voices should also be highlighted within academic research to further understand the overlap between autism and gender diversity. Participants said that they were happy that people were talking and willing to learn more. This helped them understand themselves more, which, in turn, can help other autistic people to understand themselves.

Many autistic youth and adults say that they want to live on their own, with friends, or with a partner. However, many still live with their family. Most of the research in this area talks about what autistic people and their parents think might happen when they move out of home. Yet there is not much that has explored the experiences of autistic adults who have moved out already to live independently, and none within Australia. This is important, as we need to understand their experiences so we can make them better.

The researchers wanted to understand the moving out and independent living experiences from autistic adults in Australia.

A researcher conducted 11, one-on-one interviews with autistic adults living independently in Australia. These interviews were online or over the phone depending on what participants wanted, and ranged from ∼27 to 105 minutes. Autistic adults were asked questions about when they moved out and their current independent living experiences.

We looked at what participants told us and created three ideas that described the independent living experiences of autistic adults in Australia. These ideas included how the control/choice/freedom/space are important, that some parts are hard, and that people may have made different living decisions if they were diagnosed at a younger age.

These findings help show how important it is to the autistic community to live independently and that the challenges in Australia are similar to other countries. Our findings also suggest that if people realized that they were autistic earlier in their lives, they may have better understood themselves and followed living situations that better suited their needs.

This was quite a small group of autistic adults, where the majority identified as female and were highly educated.

By better understanding the moving out and independent living experiences of autistic adults in Australia, these findings can help identify areas of support (such as finding a good home and help with money). It also provides further support to improve the diagnostic processes for autistic adults, as diagnosis can help adults better understand themselves and find homes suited to them.

There is a stereotype that autistic people lack empathy, which can potentially lead to negative perceptions and biased behaviors. This stereotype has roots in earlier academic literature around autism. However, although this literature has become more nuanced over time, the stereotype persists among the general population.

This study directly asked autistic people about their own experience of empathy and of the empathy deficit narrative to provide a richer description than is afforded by traditional studies that typically use questionnaire measures.

We asked a diverse group of 76 autistic adults to tell us how they experience empathy and what their views were of the autistic empathy deficit narrative via an online survey. These data were then analyzed, and themes created, using qualitative content analysis.

The first theme, heterogeneity of empathic experiences, captured the diverse ways in which autistic people experience empathy. Some did report a lack of empathy, whereas others did not, and some reported experiencing extreme emotional responses (hyper-empathy). The second theme, empathy as an effortful process, captured some of the challenges experienced during the empathy process and the strategies used to overcome these. The third theme, conditional empathy, captured the features of others that made it more or less likely that empathy would be experienced. Some participants found it easier to empathize with close others, animals, and other autistic people. The fourth theme, challenging the empathy deficit narrative, captured participants' perspectives on the empathy deficit narrative, which ranged from firm agreement to firm disagreement, and the perception of harm that comes from this narrative, such as interpersonal prejudice or poor clinical practice.

Previous quantitative studies using self-report measures have found various differences in empathy between autistic and non-autistic people. This study added qualitative nuance to these findings; described diverse lived experiences of empathy among autistic people, particularly in relation to hyper-empathic experiences; and articulated the resistance of autistic people to the harmful stereotypes that are based on the empathy deficit narrative.

Due to our recruitment method, the participant sample included only those who were engaged in active online autism communities. As such, the findings here may be limited in terms of how well they capture a broad range of experiences. In addition, although an online survey allowed data collection from a relatively large number of people for a qualitative study, it also meant that, unlike more typical qualitative data collection methods, it was not possible to ask participants to elaborate or to clarify their views.

We hope that this study highlights the need for greater attention to the experience of empathy in autistic people. Articulation of these issues may help autistic people reflect on their own experiences and feel “seen.” Simultaneously, education at a societal level is needed to increase awareness of these issues and reduce dehumanization, stereotyping, and prejudice among non-autistic people.

Autistic youth and young adults face a dilemma when starting their first jobs: should they disclose their autism at work? This is a complicated decision and involves considering many factors, benefits, and risks. Our team developed a decision-aid tool to help with this decision-making process called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?). This study is important because it is the first to assess the DISCLOSURE tool and explore if it may be helpful.

This study had two main goals. First, we assessed if the DISCLOSURE tool helps to build self-determination and decision-making knowledge, skills, and confidence. Second, we explored if participants thought that the DISCLOSURE tool is usable, acceptable, and can be used in the real world (feasible).

We recruited 30 participants (average age of 23.5 years) to complete two online surveys—one before and one after using the DISCLOSURE tool. We analyzed the data to observe if there were changes in decision-making and self-determination knowledge, skills, and confidence. We also explored how participants rated the acceptability, feasibility, and usability of the DISCLOSURE tool. We read through open-ended answers to group them into categories.

We found important improvements in participants' decision-making knowledge, skills, and confidence. The DISCLOSURE tool shows promise to improve self-determination. Participants agreed that the DISCLOSURE tool is usable, acceptable, and feasible. Many participants said that the DISCLOSURE tool can help them make disclosure decisions at work. Some participants said that the tool was not as helpful for them. This is because they already had disclosure knowledge and experience. Overall, the study results suggest that the tool may support some autistic young people with the disclosure decision-making process.

Few tools exist that support disclosure decision-making. Research also shows that young autistic people find it hard to make autism disclosure decisions at work and may need help. This study is the first to assess a tool that may close important gaps and help autistic young people make disclosure choices.

We need to continue testing the DISCLOSURE tool since this is the first time that we assessed it. We also missed some important perspectives in this study. Most participants were white, cisgender women, or nonbinary from Ontario, Canada, and needed internet and a tech device to take part.

Results show that the DISCLOSURE tool may help autistic youth and young adults make disclosure choices at work. We will continue to assess the DISCLOSURE tool to make sure it is effective. Autistic youth and young adults could use the DISCLOSURE tool in the future to help guide their disclosure choices at work. Relevant service providers could also use the DISCLOSURE tool with their autistic clients.

Flow is a state of mind where a person becomes completely absorbed in what they are doing and does not notice anything around them. Autistic people's experiences of flow has not been studied enough, possibly because Autistic “voices” have not been taken seriously by autism researchers in the past. This means we know little about Autistic people's experiences of flow-like states.

We wanted to know about Autistic people's experiences of flow and what effect these experiences had on their everyday lives.

One Autistic and one non-autistic researcher spoke to 24 Autistic adults about their experiences of becoming fully engaged and focused on tasks. During the interview, we asked participants to tell us about moments when they felt so immersed in a task, or a thought, that they could not (or did not want to) stop. We also asked how not being able (or not wanting to) stop a task or a thought impacts their lives.

Our Autistic participants' descriptions of their flow-like experiences seemed to be closely related to other concepts that are often talked about in the Autistic community, such as hyperfocus and monotropism. They spoke of how their flow-like experiences were all-encompassing and could bring much pleasure. But they also told us how flow could bring a great deal of struggle, as it could lead to exhaustion or neglect of other tasks (including personal care). Despite the challenges, participants enjoyed being in flow as it allowed them to be themselves.

This study showed that Autistic flow (or “hyperfocus”) can be “the most amazing feeling in the world.” It also showed that being in flow can cause challenges. We need to work with Autistic community members to develop strategies to help Autistic people manage the negative effects on everyday life and physical health and well-being.

Most of our Autistic participants were women who were White, well-educated, and employed. Most also used traditional forms of communication. We do not know if our participants' flow-like experiences are similar to Autistic people who do not use traditional forms of communication, have an intellectual disability and come from different cultures. It will also be important to work with Autistic people and their allies to find new ways to investigate flow experiences in a diverse range of Autistic people.

These findings show how important it is to focus on things that can bring Autistic people joy. We need to know more about how increasing optimal flow experiences—at home, in schools, at work—could help Autistic people to thrive.

Autistic people experience more traumatic events and more symptoms of posttraumatic stress disorder (PTSD) than nonautistic people. Little is known about if PTSD symptoms can be measured similarly among autistic and nonautistic people. Studying trauma, PTSD, and how PTSD is measured is helpful for developing useful resources for autistic adults who experience trauma and PTSD.

We wanted to compare how autistic adults and nonautistic adults experience traumatic events and symptoms of PTSD.

Two-hundred seventy-six autistic adults and 361 nonautistic adults completed questionnaires through an online research platform. We used the Life Events Checklist for DSM-5 (LEC-5) to ask about traumatic events that adults may have experienced directly, witnessed, learned about, or experienced as part of one's job. We used the Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5) to measure PTSD symptoms, including intrusions (thinking about trauma when one does not want to), avoidance (staying away from thoughts or rteminders of trauma), hyperarousal (feeling restless, having difficulty concentrating), and negative thoughts and feelings (feeling depressed, thinking the world is unsafe). Participants also filled out the Autism-Spectrum Quotient-Short to measure autistic traits and the Patient Health Questionnaire-4 to measure depression and anxiety. The researchers looked to see if the PCL-5 questionnaire works differently when it is used by autistic and nonautistic adults.

More traumatic events directly happened to autistic adults than nonautistic adults. Autistic adults also witnessed and learned about more traumatic events. Autistic adults experienced more interpersonal events than non-autistic adults (such as physical assault, sexual assault, other unwanted sexual experiences, and severe human suffering). They experienced fewer transportation accidents than non-autistic adults. Autistic adults had more PTSD symptoms than nonautistic adults, including more overall symptoms and more symptoms in each of the PTSD symptom categories (intrusions, avoidance, hyperarousal, negative thoughts and feelings). Also, the PCL-5 questionnaire measures PTSD symptoms similarly among autistic and nonautistic adults.

Our results are consistent with other research showing more traumatic events for autistic than non-autistic people, and also show higher rates of seeing or learning about traumatic events. We also contribute new information about using the PCL-5 with autistic adults, which can help clinicians and other researchers.

This study only asked autistic adults about traumatic events on the LEC-5, which does not include other traumatic events such as bullying nor sensory trauma. It is possible that autistic adults interpreted the questions differently than non-autistic adults. More than half of our participants were White, so we know less about trauma experiences for autistic people from other racial and ethnic backgrounds.

The findings of this study provide useful information about how autistic adults experience traumatic events and PTSD symptoms, which is important for improving support services for autistic adults.