'We have so much to offer': Community members' perspectives on autism research.

LAY ABSTRACT: Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven't asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members' views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.

"I have to charge my social battery": Perspectives from autistic young adults on Quality of Life.

LAY ABSTRACT: In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21-29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.

Career progression for autistic people: A scoping review.

LAY ABSTRACT: Lots of autistic people are unemployed. Even when they are employed, autistic people might be given fewer opportunities than non-autistic people to progress in their careers. For example, assumptions about autistic people's differences in social communication might mean they are not given as many promotions. Indeed, we know that many autistic people are in jobs lower than their abilities (known as 'underemployment'). We reviewed 33 studies that tell us something about career progression for autistic people. Our review found that lots of autistic people want to progress in their careers, but there are many barriers in their way. For example, when they told their employer about being autistic, some people were given fewer opportunities. Research has also shown that autistic people do not get enough support to progress and that gaps in their employment history can make it difficult to progress. Our review suggested that good employment support (e.g. mentors) might help autistic people to progress in their careers. However, not much research has evaluated employment support for autistic people, which means we do not know how useful it is. Future research should find the best support that allows autistic people to live and work in ways that are meaningful to them.

Autistic Adults' Priorities for Future Autism Employment Research: Perspectives from the United Kingdom.

Background: A growing body of research has sought to understand autistic people's research priorities. Several of these studies have identified employment as a key research priority. Yet, there have been a few attempts to identify specific, actionable priorities within this area. Methods: Using an online survey, we asked 197 autistic people in the United Kingdom about their priorities for future autism-employment research. Results: Participants spoke of their challenges in gaining and sustaining meaningful employment and called for researchers to conduct research that results in direct improvements to employment experiences. Regarding their research priorities, participants indicated a need for research covering all aspects of the employment lifecycle from accessing employment to transitioning out of employment. Importantly, participants also discussed how such research should be conducted: with autistic people as co-researchers and ensuring a diverse range of autistic people are listened to. Conclusion: While much existing autism-employment research appears to align with the priorities outlined in this study, seemingly minimal attention has been paid to later stages of the work lifecycle (e.g., progressing into more senior job roles or transitioning out of work). By identifying disparities between autistic people's priorities and the research being conducted, we can support autistic people to drive the research agenda and ensure autism-employment research positively impacts the community it aims to serve.

Why was this study done?: It is important for autism research to identify and study topics that are important to autistic people. Employment has been highlighted as an important topic by autistic people in many studies. However, we don't know what specific topics employment research should look at. What was the purpose of this study?: We wanted to know which employment-related topics autistic people think are important to research and understand why. What did the researchers do?: We created an online survey to ask autistic people about what employment research should look at. The survey asked participants about themselves (e.g., their age) and their employment experience (e.g., if they were employed or not). We also asked questions about what employment topics should be researched, why these topics are important, and what changes employment research should lead to. In total, 197 autistic people responded. We read through all the responses and grouped similar responses together. What were the results of the study?: Lots of our participants found it hard to find and keep a job. They wanted research to make autistic peoples' experiences of employment better. For example, by making hiring processes better, and by making workplaces more inclusive. They also said that research should look at all parts of employment from getting a job, to leaving a job and retiring. Participants also talked about how research should be done. They said more autistic people should be included as researchers, and we should include different autistic people from different backgrounds. What do these findings add to what was already known?: Our findings show that lots of autism-employment research is on topics that autistic people think are important. However, not much research has looked at later stages of employment, such as getting a promotion or retiring. What are potential weaknesses in the study?: Most of our participants were White, female, employed and had a degree, but in the wider autistic population that isn't the case. People from other backgrounds may have different experiences of employment, and therefore want different research. We also don't know which topic is the most important because we didn't ask participants to rank the topics they spoke about. How will these findings help autistic adults now or in the future?: This study highlights key topics that autism-employment researchers should look at. By showing where the gaps in research are, we can make sure that all the employment topics autistic people think are important are researched.

Everyday executive function issues from the perspectives of autistic adolescents and their parents: Theoretical and empirical implications.

LAY ABSTRACT: Autism researchers have a long-time interest in a set of skills called executive function. These skills include planning, inhibition, and switching between one activity and another. There was a theory that these skills explained the social and thinking difficulties autistic people might have. After years of study into this, the evidence is confusing and contradictory. Autistic people tend to report struggling quite a lot with these skills. Yet, when researchers test these skills, they do not tend to find such big difficulties. In this study, we spoke to 12 autistic teenagers and seven of their mothers about this. We asked them what they thought about their own, or their child's, executive function skills. We wanted to know about things they were good at and things they struggled with. They told us that their skills were very changeable from one context to the next and from one time to the next. According to their reports, their skills depended on how motivated they were by doing the task. Another thing that influenced their skills were how anxious they felt at the time they needed to use the skill. Finally, they told us that sometimes they think differently about how best to perform a task. We discuss what these insights mean for autism researchers who study these skills. In future, research should ask people about their experiences alongside testing their abilities in different contexts. Combining these information sources will give us a better understanding of autistic people's everyday skills as well as how best to support them.

Letter to the Editor: A possible threat to data integrity for online qualitative autism research.

LAY ABSTRACT: Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were "scammer participants": people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research.

'It's a symbolic violence': Autistic people's experiences of discrimination at universities in Australia.

LAY ABSTRACT: Autistic students experience many challenges at university. One significant barrier identified in past research was autistic students' experiences of discrimination (i.e. being treat differently) and stigma (being judged differently). Our research team included both autistic and non-autistic researchers who designed a project to help explore autistic students' experiences of stigma and discrimination at Australian universities. We interviewed 21 autistic students who went to a university - some had completed qualifications, and some had not. From our interviews, we identified four themes: (1) 'My disability is something that people just don't have a clue about', (2) 'the system is really stacked against you', (3) the onus is on autistic students, and (4) 'grit and stubbornness'. As a result, we recommended changes in the way courses are written and taught so that autistic people have opportunities that meet their ways of learning. It is also important for university staff to understand the impact of trauma experienced by autistic people and that universities work together with autistic people to design courses and supports that include autistic ways of learning, accessible university processes and identify support needs.

'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children.

Background and aims: Participatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project. Methods: Using key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study. Results: We found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being. Conclusions: These findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners. Implications: This study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities.

Autistic young people adaptively use gaze to facilitate joint attention during multi-gestural dyadic interactions.

LAY ABSTRACT: Autistic people have been said to have 'problems' with joint attention, that is, looking where someone else is looking. Past studies of joint attention have used tasks that require autistic people to continuously look at and respond to eye-gaze cues. But joint attention can also be done using other social cues, like pointing. This study looked at whether autistic and non-autistic young people use another person's eye gaze during joint attention in a task that did not require them to look at their partner's face. In the task, each participant worked together with their partner to find a computer-generated object in virtual reality. Sometimes the participant had to help guide their partner to the object, and other times, they followed their partner's lead. Participants were told to point to guide one another but were not told to use eye gaze. Both autistic and non-autistic participants often looked at their partner's face during joint attention interactions and were faster to respond to their partner's hand-pointing when the partner also looked at the object before pointing. This shows that autistic people can and do use information from another person's eyes, even when they don't have to. It is possible that, by not forcing autistic young people to look at their partner's face and eyes, they were better able to gather information from their partner's face when needed, without being overwhelmed. This shows how important it is to design tasks that provide autistic people with opportunities to show what they can do.

"He's shouting so loud but nobody's hearing him": A multi-informant study of autistic pupils' experiences of school non-attendance and exclusion.

Background and aims: Children and young people on the autism spectrum frequently report a range of negative educational experiences and face disproportionally high rates of school non-attendance, including school avoidance and permanent exclusion, which can have a significant impact on their well-being as well as educational and broader life outcomes. To date, few studies have examined the full range of proximal (child, parent/family, school levels) and distal (community and society levels) barriers to ensuring the school attendance and the inclusion of autistic pupils. The current study sought to do just that by examining autistic young peoples' school non-attendance and exclusion experiences from the perspectives of multiple informants. Methods: We recruited 12 autistic pupils, who had previously experienced school avoidance and/or exclusion, from one local authority in England, United Kingdom. We conducted semi-structured interviews with the young people themselves, ten of their parents, eight of their current teachers and nine local authority professionals, including six educational psychologists and three specialist autism teachers. We analyzed interviewees' responses using reflexive thematic analysis. Results: Interviewees gave overwhelmingly negative accounts of autistic pupils' school non-attendance and exclusion experiences. Our analysis identified a range of school-related factors they felt led to, or exacerbated, negative experiences in their former mainstream schools, and which ultimately led to their or their children's school non-attendance. It also went further to identify distal factors, including fragmented educational experiences, parents "fighting" against a complex bureaucratic system to secure appropriate education for their children, and limited professional involvement. Conclusions: Our findings emphasize the importance of examining the broader context in which autistic pupils are embedded and demonstrate that such pupils are able to successfully attend-and even enjoy-school when they receive the appropriate care and support. Implications: Schools and local authority professionals should seek to work in partnership with parents and autistic pupils to secure the necessary support for their inclusion in mainstream education. Government policy should support the provision of sufficient local authority professionals to adopt a more proactive approach to mitigate autistic pupils' avoidance of and exclusion from school.

Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.

LAY ABSTRACT: A lot of autism research has focused on finding genes that might cause autism. To conduct these genetic studies, researchers have created 'biobanks' - collections of biological samples (such as blood, saliva, urine, stool and hair) and other health information (such as cognitive assessments and medical histories). Our study focused on the Australian Autism Biobank, which collected biological and health information from almost 1000 Australian autistic children and their families. We wanted to know what people thought about giving their information to the Biobank and why they chose to do so. We spoke to 71 people who gave to the Biobank, including 18 autistic adolescents and young adults, 46 of their parents and seven of their siblings. We also spoke to six researchers who worked on the Biobank project. We found that people were interested in giving their information to the Biobank so they could understand why some people were autistic. Some people felt knowing why could help them make choices about having children in the future. People also wanted to be involved in the Biobank because they believed it could be a resource that could help others in the future. They also trusted that scientists would keep their information safe and were keen to know how that information might be used in the future. Our findings show that people have lots of different views about autism biobanks. We suggest researchers should listen to these different views as they develop their work.

Autistic adults' experiences of financial wellbeing: Part II.

LAY ABSTRACT: Money matters in people's lives. It helps to meet people's basic needs (food, clothes, shelter) and live the lives they want to. When people talk about 'financial wellbeing', they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don't know what autistic people think about these things. That's why we did our study. We spoke to 21 autistic adults (24-69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt 'financially well' or 'financially unwell' so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could - because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people's financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security.

'I live in extremes': A qualitative investigation of Autistic adults' experiences of inertial rest and motion.

LAY ABSTRACT: 'Autistic inertia' is a term used by Autistic people to refer to difficulties with starting and stopping tasks. However, there has not been much research on Autistic inertia. The research that is available on Autistic inertia has mostly focused on the negative aspects of inertia, rather than on the possible benefits of needing to continue tasks. In this research, we wanted to understand more about Autistic people's experiences of inertia and to work out what things might influence these experiences. Autistic and non-Autistic researchers spoke in-depth to 24 Autistic adults. We identified four key ideas from people's responses. Autistic people spoke about their inertial 'difficulties moving from one state to another' and described how these challenges affected them 'every single day'. While they experienced inertia as 'the single most disabling part of being Autistic', people also described the positive aspects of inertia, including the joy they felt when completely immersed in a task. Our Autistic participants emphasised that inertial difficulties are experienced by everyone, the intensity of these task-switching difficulties might be especially challenging for Autistic people. Our findings also reveal how Autistic inertia can be seen both as a disabling and as an enabling condition.

Predicting the financial wellbeing of autistic adults: Part I.

LAY ABSTRACT: Researchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people's thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation-which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people's financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters.

Poly-victimization of autistic adults: An investigation of individual-level correlates.

Autistic people experience high rates of violence and victimization which is largely due to structural injustices, including stigma and social attitudes. Identifying and addressing systemic and structural factors is vitally important, however effecting change in embedded social structures is likely to take some time, even with concerted efforts. In the meantime, it is important to understand whether there are other individual-level factors that may assist in developing preventative and protective strategies for autistic people. The current study investigated the role of individual-level risk factors in the victimization of autistic people. Specifically, we examined whether characteristics that are common among autistic people that is, lower social competence, higher compliance and emotion regulation difficulties or more ADHD features (inattention, impulsiveness and hyperactivity) were associated with poly-victimization in a community sample of 228 adults (118 autistic, 110 non-autistic). Our results show that only ADHD features were predictive of poly-victimization once socio-demographic background variables (age, sexual orientation) were adjusted for. Group status was not a significant predictor in the model and there were no interaction effects between any of the characteristics and group status. These findings suggest that, regardless of whether a person is autistic, ADHD features may place individuals at higher risk of experiencing multiple forms of violence in adulthood. Further research using longitudinal designs and larger, diverse samples is needed. Furthermore, the regression model only accounted for about one-third of the variance in poly-victimization which highlights the importance of looking beyond individual-level risk factors to structural and systemic factors that contribute to disproportionate victimization of autistic people.

The workplace masking experiences of autistic, non-autistic neurodivergent and neurotypical adults in the UK.

Masking entails hiding or concealing one's traits during social interactions. Research suggests that masking is particularly common for autistic people, though many non-autistic people also conceal aspects of their identity. Existing research has identified the key motivations and consequences of masking. No research to date, however, has considered how this might be affected by the social context in which masking is employed. This study compared the masking experiences of 285 autistic, 88 non-autistic neurodivergent and 99 neurotypical adults within a context in which masking is expected to be highly prevalent, namely the workplace. We used reflexive thematic analysis to explore the motivations, consequences, and contextual differences of workplace masking compared to other social contexts. Workplace masking was considered by participants in all three groups to be an adaptive response to a range of socially grounded workplace challenges and was usually employed as a strategy to safeguard against the threat of negative social and employment outcomes. Our non-autistic neurodivergent and autistic participants, however, reported experiencing unique pressures to mask, given the limited understanding of neurodiversity in workplaces and society more broadly. These findings have important implications for the wider masking literature and for workplace practice.

The Foundations of Autistic Flourishing.

PURPOSE OF REVIEW: All people-including Autistic people-deserve to live flourishing lives. But what does a flourishing life look like for Autistic people? We suggest that the hidden biases, methodological errors, and key assumptions of autism science have obscured answers to this question. Here, we seek to initiate a broader discussion about what the foundations for a good Autistic life might be and how this discussion might be framed. RECENT FINDINGS: We identify five ways in which autism science can help us all to secure those foundations, including by (1) giving Autistic well-being prominence in research, (2) amplifying Autistic autonomy, (3) attending better to everyday experiences, (4) acknowledging context, and (5) working in partnership with Autistic people and their families and allies to ensure that they are at the heart of research decision-making. Such an approach would direct the focus of autism research to help shape good Autistic lives.

'Playing a guessing game': Recognising and responding to anxiety in children with intellectual disability.

BACKGROUND: Children with intellectual disability are at greater risk of developing anxiety than the general population. Limited research has examined the challenges associated with recognising and responding to anxiety in children with intellectual disability, and its perceived impact. AIM: This study aimed to explore anxiety in children with intellectual disability, from the child and parent perspective to better understand how parents and children recognise and respond to anxiety. METHOD AND PROCEDURES: Six children with an intellectual disability (age range: 12-17, four boys) and their mothers participated in a semi-structured interview online. Interviews were transcribed verbatim and interpreted using thematic analysis. OUTCOME AND RESULTS: Mothers elaborated on the difficulties with recognising signs of anxiety due to the impact of the child's primary diagnosis and the overlap of symptoms with co-occurring conditions. Mothers and children discussed the 'contagious' effect of anxiety within the household and how this influenced mothers' approaches to managing their child's anxiety. They reported that anxiety limited the meaningful activities in which children and families could engage. CONCLUSIONS AND IMPLICATIONS: These findings highlight the importance of supporting mothers to recognise their children's anxiety and to assist them with strategies on how best to respond and cope. These findings have implications for future research, and practitioners working in this field.

Ear and hearing care programs for First Nations children: a scoping review.

BACKGROUND: Ear and hearing care programs are critical to early detection and management of otitis media (or middle ear disease). Otitis media and associated hearing loss disproportionately impacts First Nations children. This affects speech and language development, social and cognitive development and, in turn, education and life outcomes. This scoping review aimed to better understand how ear and hearing care programs for First Nations children in high-income colonial-settler countries aimed to reduce the burden of otitis media and increase equitable access to care. Specifically, the review aimed to chart program strategies, map the focus of each program against 4 parts of a care pathway (prevention, detection, diagnosis/management, rehabilitation), and to identify the factors that indicated the longer-term sustainability and success of programs. METHOD: A database search was conducted in March 2021 using Medline, Embase, Global Health, APA PsycInfo, CINAHL, Web of Science Core Collection, Scopus, and Academic Search Premier. Programs were eligible or inclusion if they had either been developed or run at any time between January 2010 to March 2021. Search terms encompassed terms such as First Nations children, ear and hearing care, and health programs, initiatives, campaigns, and services. RESULTS: Twenty-seven articles met the criteria to be included in the review and described a total of twenty-one ear and hearing care programs. Programs employed strategies to: (i) connect patients to specialist services, (ii) improve cultural safety of services, and (iii) increase access to ear and hearing care services. However, program evaluation measures were limited to outputs or the evaluation of service-level outcome, rather than patient-based outcomes. Factors which contributed to program sustainability included funding and community involvement although these were limited in many cases. CONCLUSION: The result of this study highlighted that programs primarily operate at two points along the care pathway-detection and diagnosis/management, presumably where the greatest need lies. Targeted strategies were used to address these, some which were limited in their approach. The success of many programs are evaluated as outputs, and many programs rely on funding sources which can potentially limit longer-term sustainability. Finally, the involvement of First Nations people and communities typically only occurred during implementation rather than across the development of the program. Future programs should be embedded within a connected system of care and tied to existing policies and funding streams to ensure long term viability. Programs should be governed and evaluated by First Nations communities to further ensure programs are sustainable and are designed to meet community needs.

"I'm the Family Ringmaster and Juggler": Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic.

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed. Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic. Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set. Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else." Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.

Why is this an important issue?: There is very little research about what autistic parents think about being a parent and how they manage in their everyday lives. What was the purpose of this study?: We, a group of autistic and non-autistic researchers, worked together to look at autistic people's experiences of life during the COVID-19 pandemic. In this study, led by an autistic parent, we focused on understanding what parenting was like for autistic parents during this time. What did we do?: We spoke to 35 autistic parents, mostly from Australia, about their experiences of life during the first COVID-19 lockdown. Almost all parents were women. They each spoke to us for about 1 hour. We discussed questions like, "What has been difficult for your child about being required to stay at home? And what has been positive about it? What about you? How have you found having to stay at home?". What were the results of the study?: Autistic parents told us that life before COVID-19 could "be really hard." Their days were spent focusing on their children and supporting them, but they felt life became a bit simpler during lockdown. They also did not have "to go out in the non-autistic world," which they found exhausting. But lockdown made things difficult, too. Autistic parents told us that they were stressed about trying to juggle everything at home, such as home learning, working from home, and cleaning the house. They also felt that they were the ones supporting everyone else. This meant they did not get the rest they needed. They were also worried about COVID-19. These worries and pressure often had a terrible effect on autistic parents' mental health. They wanted to reach out to their friends­especially autistic friends­for help but often could not. There were few other supports available to help them. Even when things were difficult, they told us that they nonetheless felt connected with their children during lockdown and that they were putting their children's mental health first, above everything else. What do these findings add to what was already known?: This study shows how hard everyday life can be for autistic parents. These parents usually rely on their friends for support. But they could not do that during lockdown. This meant they had to get help from more official supports and services. But these often just were not available. As a result, autistic parents felt "very much forgotten" as a group. What are potential weaknesses in the study?: Most of our participants were women, well educated, and White. We do not know if our autistic parents' experiences would be the same for other autistic parents, such as autistic fathers or those from other racial/ethnic backgrounds. How will these findings help autistic adults now or in the future?: These findings show how important it is to understand how we can support autistic parents and make their lives better during times of crisis and in more normal times. This needs to be done in partnership with autistic parents.