Autism in Adulthood

The autism and autistic communities are increasingly unhappy with the current state of autism research, which have led to tensions between community members and autism researchers. Recent discussions on this topic have mentioned that early-career autism researchers—those who have gotten their PhDs but are still working toward a more stable career—have been negatively affected by community members publicly criticizing their work. According to several recent reports, these public criticisms have made early-career autism researchers feel worried about continuing their work in the same area and are considering doing another research topic. This is an important issue to discuss because such claims are not consistent with what the research shows, my own experiences as well as those of several other autism researchers. I think this discussion should prompt us—autism researchers—to take a step back and reflect on our research practices.

In this article, I reflect on my own experience as an early-career autism researcher who has recently changed my research topic from trying to understand how autism occurs to trying to understand how society can be more accepting of autistic people. I use my own experience and experiences of other researchers to argue that changes in research directions as a result of community feedback comprise positive progress for autism research.

I am a non-autistic early-career researcher who has been working in autism research for over 10 years as a student and postdoctoral researcher. I have recently changed my research topic due to having doubts about the real-world impact of my early work after reflecting on autistic people's criticisms on my work. These criticisms played an important role in my development as a researcher.

Based on previous studies, we know that the autistic and autism communities are dissatisfied with much of the autism research being done. Many community members felt that some autism research is out-of-touch with their everyday experiences. Though it has been suggested that a participatory research approach—meaning involving autistic people throughout the research process—should help address some of these concerns, such an approach is still uncommon.

I recommend that autism researchers—non-autistic researchers in particular—take this opportunity to reflect on the purpose of one's research and how it affects the everyday lives of autistic people, our position of power in influencing the way autistic people are being perceived, and the limitations of our academic understanding of autism and autistic people's experiences. I also encourage early-career autism researchers to consider taking steps, even small steps, to improve the way autism research respects and aligns with the perspectives and priorities of the autism and autistic communities.

It is my hope that my experiences, reflections, and recommendations will encourage autism researchers to conduct studies that are more in line with the priorities of the autism and autistic communities and are better informed by lived experiences.

I address current debates about the usefulness of understandings of autism forwarded within the Neurodiversity Movement, which portray autistic people as a unified group who are biologically different from non-Autistic people. This can downplay the diversity of the Autistic community. The Neurodiversity Movement is a social movement that supports the rights of people with neurological and cognitive differences such as autism. It is based on the belief that differences in the ways our minds work are a natural part of human diversity, and that there is not a single correct way for human minds to function. Some Neurodiversity advocates see value in emphasizing ways in which we are similar to each other.

I argue that some of the work done in anti-colonial and indigenous movements can be applied to the current debate within autism studies. Neurodiversity advocates would also benefit by clarifying where we are making arguments strategically to support advocacy goals. I argue that frameworks that present neurodiversity as comparable with biodiversity provide a starting place for further developing theory. Theories of neurodiversity need to allow for some understanding of biologically based differences, but without downplaying the importance of social factors in constructing autism, and without flattening out the diversity of our community. I also argue that seeing how autism intersects with other forms of difference, such as race, gender, and sexuality, is important for understanding discrimination against autistic people.

I draw connections between the Indigenous rights movement and the Neurodiversity Movement. Indigenous people also have to navigate legal frameworks that reduce many different cultures and languages into one identity group. In a similar way, Autistic people often have to navigate supports and services through medical diagnosis, which can lump a diverse community into a single group. There is also a connection in the ways in which indigenous people have been denigrated by colonial powers as mentally inferior, and the ways in which Autistic people, and especially Autistic people with higher support needs, have been denigrated.

The way that neurodiversity has been discussed in academic literature hasn't always accurately reflected the way it is discussed by activists. Sometimes, activists say things that don't fully match up with their underlying theoretical views because they need to appeal to existing narratives about autism, or because they want to build solidarity within the Autistic community. Also, the voices of those who experience multiple types of discrimination have often been overlooked. More discussion of how discrimination against disabled people relates to discrimination based on things like race and gender would make it easier for academic writers to understand the complexity of the Neurodiversity Movement. It would also make it easier for Neurodiversity advocates to understand the ways that prejudice against disabled people works in our society and highlight opportunities to build alliances with other movements.

Many research studies find that autistic people do not live independently—many autistic people live with their parents or in sheltered accommodation. As our knowledge about autistic people, and the diversity of their life experiences, increases, it is important to investigate a range of real-life transitions. So far, the transition to independent living has not been reviewed (specifically, the process of moving from one living place to another).

We reviewed published studies to try and find all the available studies that may have looked at the process of moving home for autistic people.

We designed a search method to find all the articles that were relevant to this question. We searched six academic databases and used Google Scholar.

We found that there were no studies which looked at the specific question of what autistic people experience when they move home. However, we did find some studies which looked at the benefits of living independently (with reports from autistic people and from the parents of autistic people). We also found one study which looked at the choices autistic people have in where, and with whom, they live.

Based on the included studies, it does seem that autistic people may benefit from living independently. However, we do note that the issue of independent living cannot be examined without consideration of other factors, such as employment. Also, it is not universally the case that all autistic adults prefer, or will benefit from, living independently.

We aim to use the findings of this review, alongside our ongoing mixed-methods study of autistic people's experiences, to design a tailored co-produced resource to help autistic people plan for moving home.

Magnetic resonance imaging (MRI) is an examination that shows human anatomy and may explain the causes of symptoms. Autistic people may need MRI scans for various reasons, such as low back pain, headaches, accidents, or epilepsy. They have known sensitivities to sound, light, smell, or touch and increased anxiety, so the narrow, loud, isolating, unfamiliar MRI environment may be overwhelming to them. If MRI scans are, for these reasons, inaccessible, many autistic people will have to live with long-standing conditions, pain, or other symptoms, or have delayed treatment, with impact on their quality of life, and life expectancy.

We tried to understand how autistic people perceive MRI examinations, things that work, and the challenges they face. We also asked for their suggestions to improve practice and accessibility.

We distributed an online questionnaire to autistic adults through social media. We analyzed the data using appropriate statistical and text analysis methods.

We received 112 responses. Autistic people rated their overall MRI experience as average. Nearly a third (29.6%) reported they were not sent any information before MRI, and only 17.1% reported that radiographers offered some reasonable environmental adjustments. Most participants (68%) reported that radiographers provided detailed information on the day of the scan. Only 23.2% of them disclosed their autistic identity when booking MRIs. We found that quality of communication, physical environment, patient emotions, staff training, stigma, and timely autism diagnosis impacted their MRI experiences.

Autistic people MRI scan experiences are at the heart of this project. Our project shows that MRI for common symptoms is often inaccessible by autistic people. We should improve the MRI environment, adjust communication format/content for them, and deliver person-centered care in MRI. Health care professionals should receive relevant training, to understand the challenges autistic people might face and better support them in MRI scanning.

The pandemic has impacted participant recruitment; therefore, the results of this sample may not reflect the full impact on the wider autistic population or adequately represent the autistic community, due to small size and including only people who could consent.

These results come from different centers, so there is a lot of variation in the use of MRI equipment.

We outline the main challenges associated with MRI, so autistic adults and their families/carers understand more of what they could expect in future examinations; hopefully, researchers and scanner manufacturers will try to tackle these challenges to make MRI scans truly accessible for autistic people.

We shared this knowledge with stakeholders to develop guidelines and started using it in training. We want to ensure that MRI is person-centered and more accessible for autistic patients.

Autism researchers often use questionnaires but might not always use well-designed ones. Its important that autistic people feel they can complete questionnaires and provide accurate information about what is important to them. Also, when answering a questionnaire, someone usually must make decisions, for example, about which option best fits their own experiences. But researchers might not consider that making decisions can be difficult for some autistic people.

We wanted to find out what autistic people thought about questionnaires and what things affected their decision making.

We created an online survey, which 117 autistic people completed. We had an open question asking participants what affected their ability to make decisions. Participants then completed four questionnaire measures that other people had created before, which had statements followed by tick boxes on different scales (e.g., strongly agree to strongly disagree). After each of these measures, we asked participants to give open feedback. We then identified patterns in the participants' responses.

Participants' decision making was affected by things such as their mood and energy level, having to consider how their decision affects others, the quality and quantity of information provided, pressure on choosing a response, external distractions (like noise), and having to decide quickly. Participants' feedback about the questionnaire measures identified potential improvements. There were some positive comments, but participants often said the measures needed more context to explain them or needed to consider the current context (like how a global pandemic might be affecting their answers). They also said some questions were not clear and difficult to understand, the response options needed improving, or the questions were not relevant for autistic people.

Our findings show how decision making can be challenging for some autistic people, and this could influence their responses when doing research. Participants' responses give important information for autism researchers to consider when using questionnaires. Our findings are further evidence that questionnaires should be adapted or new ones created specifically for autistic people. The findings imply that it is important to involve non-academic autistic people in research.

Most participants were female, White, and from Western countries, which limits how our findings might apply more widely. We asked generally about decision making rather than specifically about the research context, and more in-depth interviews on this topic would be useful.

The things we have learned from our study can be used by autism researchers to improve their research design. If they make improvements, this means taking part in research will be more enjoyable and straightforward for autistic people. Autism research can potentially improve autistic people's lives, but we need to make the experience of taking part in research better.

More and more research is investigating which words should be used to talk about autism. Initially, this discussion revolved around the use of person-first language (e.g., person with autism) versus identity-first language (e.g., autistic person) but has recently expanded to other autism-related terms (e.g., disorder, deficits, high-functioning autism). To date, all the studies on this topic have focused on language preferences in English-speaking countries, and little is known about preferences in other languages.

We wanted to know whether French-speaking autistic adults would show similar or different autism-related language preferences than English-speaking autistic individuals. We also wanted to know the reasons for these language preferences.

In an online survey, we asked 541 French-speaking autistic adults around the world what terms they prefer to use to talk about (1) the nomenclature of autism, (2) an autistic person, (3) someone's autistic identity, (4) autism more broadly, (5) the abilities of autistic people, and (6) someone without an autism diagnosis. Participants also had the opportunity to tell us more about their language preferences in an open comment.

The most preferred terms were “Autisme,” “Personne autiste,” “Autiste,” “Est Autiste,” “Différence/neurologique,” “Différences,” “Difficultés,” “Personne neurotypique,” “Neurotypique,” and “Personne non autiste.” To better understand the reasons underlying these preferences, participants' open comments were analyzed, revealing further support for identity-first language and the social model of disability, and a preference for simple, precise, and validated terms.

The reported preferences are not representative of all autistic individuals, as our sample did not include children and adolescents. In addition, we did not make specific adaptations to our questionnaire for non-speaking people or people with intellectual difficulties, so we do not know to what extent their opinions are represented in our data. Further, recruitment was done almost exclusively online, resulting in a self-selecting recruitment method for our sample (i.e., participants who have access to Internet and a computer). Finally, participants who responded to the advertisements and completed the questionnaire are probably interested in the debate regarding language to talk about autism. Therefore, our sample may be more representative of the online autistic, pro-neurodiversity community.

This study is the first to look at the language preferences of French-speaking autistic adults. Further, our results have substantial implications for informing the language of researchers, clinicians, and other professionals in the field, as well as the general public.

Autistic people in France have been treated very badly in the past. They have been left out of school and hurt by professionals. They still face stigma. This means they are often misunderstood, made fun of, and excluded. Some are forced to take medications they do not want. Autistic people in France have been trying to help other people in France understand autism.

We wanted to see whether autism training could help university students in France to better understand autistic people. We wanted to see whether our training could help students appreciate autistic people more (or lower stigma). We also wanted to see whether the training could help students understand that it is important to include autistic people in classes with other students at school.

Researchers in France, Lebanon, and the United States modified an autism training that had been used in other countries. The training was autistic affirming, which means it taught people to listen to autistic people and to see their strengths. We translated it into French. We included training topics that French collaborators thought were important. We asked university students in France who were studying education and psychology to do our training online. We also asked them to fill out surveys about autism.

After doing our training, students knew more about autism than they did before training. Some learned that autism is part of a person for their whole life. They seemed to appreciate autistic people more after training. They also agreed that it is important to include autistic people in school with other students more than they had before.

This study shows that autistic-affirming training can also help people in France appreciate autistic people. Much autism training only focuses on stigma and knowledge. Our training may also have helped future educators and clinicians understand how important it is to include autistic people in school with other students.

The students in our study were mostly women. They were all training for jobs where they can help people. We do not know whether our training would help other French people. We also cannot be sure that our training really helped the students who did it. Students may have been dishonest about how they felt about autism. In future studies, people should see whether training changes what people do, not just what they say.

By teaching students in France about autism, we hope to begin to help make life better for autistic people in France. We hope studies like this will help people to understand autistic people better. We also hope more people conduct trainings like that used in this study around the world to improve understanding and treatment of autistic people.

We did not know how the pandemic and the strict restrictions that followed would affect autistic people's well-being and mental health.

Also, there was a worry that the pandemic would affect the number of volunteers taking part in research that matters the most to autistic people. Thus, it was important to understand any implications for the way we conduct research with the autistic community after the pandemic.

We explored the experiences of autistic people living through the first 6 months of the COVID-19 lockdown in the United Kingdom. We were particularly interested in autistic people's views on how the pandemic may affect them taking part in research.

We co-produced this interview study to answer our research questions. We carried out in-depth interviews with 31 autistic people. We looked for patterns or themes in what the participants said.

Autistic people we interviewed reported being able to enjoy a quieter pace of life. They felt less anxious early in the lockdown. But they also faced great challenges adjusting to changes in their daily routines. Inconsistent public health communication caused worry during the transition out of lockdown. Unnecessary stress might have led to worsening of mental health issues in some people. Our participants held positive views on taking part in and engage with research, despite the pandemic. We identified opportunities that could make research more inclusive for autistic people, for example, online methods for taking consent and taking part in research remotely.

Our study adds to the evidence of the varied responses of autistic people to the pandemic and the public health measures that it led to. One important strength of our work is our focus on the impact of the pandemic on research and implications of future research. We learnt that autistic people welcome and value the use of online technology to reach study participants. Wider use of remote technology can make research more inclusive and participatory.

Many of our participants were already had experience participating in research. Also most had relatively high education levels. We did not include autistic people with intellectual disabilities. We did not collect information on ethnicity. Our sample is likely to have little ethnic diversity.

We describe the experiences of autistic people in the face of unprecedented circumstances. We found the need for clear public health communication to avoid unnecessary stress. The pandemic has provided the opportunity for a wider use of remote methods of research, even in areas where this was not done in the past (e.g., clinical trials). Our study found that such approaches would make research more inclusive.

The COVID-19 pandemic and national stay-at-home order (known in the United Kingdom as a “lockdown”) led to severe disruption and change in people's lives throughout 2020 and early 2021. However, only a few studies have examined the impact of the lockdowns on autistic people's well-being.

The abrupt changes caused by the COVID-19 pandemic and lockdowns may have had a more detrimental impact on the lives of autistic people compared with others. This study aimed to explore the impact of the pandemic on the lives of autistic people and to provide context and descriptions of their experiences.

We asked autistic adults a range of open-response questions using an online survey in July/August 2020 to understand how they experienced the COVID-19 pandemic and periods of national lockdown. A total of 79 autistic adults from the United Kingdom took part. The questions asked about participants' health and general well-being, their social lives, and sensory differences before (retrospectively) and during the U.K. national lockdowns that occurred between March and August 2020.

Overall, most people felt that the pandemic had a negative impact on their lives. Many felt isolated and lonely due to lockdowns, and many expressed feelings of distress and anxiety at the prospect of returning to normality. However, several participants did report positive aspects of the periods of lockdown, such as having more time for personal interests and practicing self-care, and having to deal with less noise and sensory overload.

To date, much of the research about the impact of the COVID-19 pandemic and lockdowns on autistic peoples' lives has been quantitative (e.g., using scores on questionnaires). This study uses qualitative data (responses to open-ended questions). This study provides important contextualization of how the pandemic and lockdowns have impacted the lives of autistic people and highlights the need for additional support in the years after the pandemic.

This study only includes autistic people, so we cannot be sure whether these experiences are unique to autistic people. Additionally, these findings may not be generalizable to the wider autistic population, including those who were unable to participate (e.g., those with learning difficulties).

The COVID-19 pandemic and lockdowns are likely to have a long-lasting impact on well-being, which may disproportionately impact autistic people. As such, autistic people may need additional, tailored, support as COVID-19 becomes endemic (i.e., no longer a pandemic but part of everyday life, somewhat like seasonal flu). Additionally, lessons may be learned from the pandemic about how society could be adapted to become more inclusive.

During the COVID-19 pandemic, all university students experienced rapid unexpected changes in teaching and learning formats when they had to switch from face-to-face learning to online platforms. There is almost no published information on autistic students' learning experiences during the pandemic. The purpose of this study was to understand eight autistic university students' reported lived learning experiences during the COVID-19 pandemic and to discover potential academic supports that the students identified.

We interviewed eight Canadian autistic university students (five undergraduates and three graduates) about their lived academic experiences before and during the pandemic, focusing on their experiences with changes from face-to-face to online learning. We also asked them about effective academic supports that universities could provide. Autistic and nonautistic researchers worked together to analyze the participants' responses.

The study found that individual, interactional, and environmental factors combined to affect these university autistic students' lived learning experiences and their preferences for either online or in-person learning. Specifically, first, we found that each student's ability to study independently in an organized way and their personal mental health concerns such as anxiety management were key in deciding their learning preferences. Second, each student's prior success in socially interacting with instructors and teaching assistants was important in their preferences for online or in-person learning. Third, each student's sensory experiences on campus and at home including factors such as having to attend large noisy classes or the availability of quiet home-based learning environments were important. We also found that each autistic student experienced learning uniquely and required individualized supports. In this study, the three graduate students reported wanting to return to in-person learning as soon as possible, whereas most undergraduate students preferred online learning.

We were not able to recruit as many or as diverse a group of students as we would have liked. Additionally, although autistic co-researchers took part in the coding, analysis, and writing of this study, they did not contribute to the earlier design or data collection. In the future, we plan to fully involve autistic co-researchers from the start to ensure we produce research that addresses the expressed needs of autistic people.

This study provided evidence of eight autistic university students' lived learning experiences and preferences during the pandemic and described supports that the students indicated were important in helping them learn effectively at university.

This small-scale study provided early evidence about these autistic university students' preferences for online or in-person learning and the reasons for these preferences. These findings can be used to expand this study to include a greater number and diversity of students to investigate how other factors such as race, economic status, presence of co-occurring conditions (e.g., learning disabilities), and others may also influence autistic university students' learning preferences.

Many autistic individuals are diagnosed with mental illnesses such as anxiety or depression. Having a mental illness leads to negative consequences such as feelings of loneliness and sleep problems. Research findings show that improving autistic people's ability to regulate emotions can reduce symptoms of mental illnesses. Being compassionate toward ourselves during stressful and difficult moments can help us better regulate our negative emotions such as anger, sadness, and fear. Better emotion regulation then improves mental health. Research in the general population supports this proposal. But no research has studied the relationship between self-compassion, emotion regulation, and mental health in autistic adults.

This study aims to look at the relationship between self-compassion, emotion regulation, and mental health in a sample of autistic adults.

We designed an online survey and asked autistic adults to complete this survey. Several autism and autistic organizations around the world helped us spread the word about this study (we are grateful for their support!). The survey contained questions capturing people's self-compassion levels, emotion regulation difficulties, and symptoms of anxiety and depression. One hundred and fifty-three autistic adults completed the survey. These participants either self-reported a diagnosis of autism or self-identified as autistic.

We found that autistic adults with higher levels of self-compassion had better emotion regulation and fewer symptoms of anxiety and depression.

Researchers and clinicians have designed various treatments to improve autistic people's emotion regulation. And we know that some of these treatments also improve mental health. We need to identify the components that should be included in the treatments to make them most effective. If future research continues to find this relationship between self-compassion, emotion regulation, and mental health, then adding a self-compassion component to emotion regulation treatments may be helpful.

This study has several weaknesses:

Online survey design—we could not conduct diagnostic assessments to confirm the participant's autism diagnosis. But we have used a questionnaire called the Autism Spectrum Quotient; all participants who self-identified as autistic met the cutoff for autism.

We hope this study will start the conversation on the relevance of increasing self-compassion for improving emotion regulation and mental health in autistic adults. Therefore, this study may inform the design of future interventions for improving autistic adults' emotion regulation and mental health.