Keywords

Introduction: Autism, Health and Gender

Around 3% of people are Autistic (Centers for Disease Control & Prevention, 2023), with age and gender differences resulting from historical under-diagnosis, rather than innate differences (Halladay, 2015). Autism is a naturally occurring part of cognitive diversity, resulting in changes in communication style and sensory processing, which can be Disabling in a society that promotes neuronormativity (Milton, 2012). One area in which Autistic people are disadvantaged is in access to healthcare. Autistic people have increased morbidity and early mortality (Bishop-Fitzpatrick & Kind, 2017). There is not a simple explanation for this, with multifactorial causes responsible. For example, widespread societal stigmatisation is directed towards Autistic people (Cage et al., 2018)—including by health professionals (Corden et al., 2021) who may communicate awkwardly with Autistic patients (Mason et al., 2019).

It has long been established that being marginalised by more than one characteristic, such as being both a woman and from a minoritised ethnicity, compounds the impact of that marginalisation; this is known as intersectionality (Crenshaw, 1989). However, much research on Autistic adults has focused on Autistic men’s experiences, failing to consider the additional marginalisation of Autistic women. This is despite Autistic women and girls being more than four times as likely to commit suicide than Autistic men and boys (aIRR: 8.551 V 1.93; Kõlves et al., 2021). Autistic women are also more likely to have chronic pain conditions (Asztély et al., 2019), neurological conditions (Da Walt et al., 2021) and be at higher risk of dying in hospital than non-Autistic people and Autistic men (Akobirshoev et al., 2020). These health disparities could potentially be explained by Autistic women and girls being more likely to experience societal stigma for presenting as their authentic selves, resulting in “Autistic masking”, which is energy intensive (Miller et al., 2021) and contributes to women and girls going unrecognised as Autistic or not receiving the support they need (Wood-Downie et al., 2021). Furthermore, when Autistic people become parents, particularly to Autistic children, they may be subjected to involuntary social work intervention based on their “perplexing presentations” and ableist notions of what constitutes “good motherhood” (Benson, 2023), although variation in healthcare systems can potentially reduce this stigma (Ellis et al., 2023).

We know the care given to UK-based women in a general population during the perinatal period and in relation to gynaecological healthcare results in unmet needs (Brown, 2021). Due to Autistic people’s known differences in bodily experiences relating to interoception, pain and sensory perception (Mason et al., 2019), Autistic women and other people with wombs’ (APWW) reproductive health experiences and needs are likely to vary compared to their non-Autistic peers. For example, we know that many APWWs experience overstimulation during menstruation (Gray & Durand, 2023) and that APWWs are less likely to attend cervical screening than non-Autistic peers (Nicolaidis et al., 2013). Even so, there is a dearth of research on the reproductive health needs of APWW. For example, recent systematic reviews of Autistic pregnancy (Samuel et al., 2021) and infant feeding (Grant et al., 2022) identified only six and eight peer reviewed studies, respectively, with many including limited data. We were unable to find any published research on Autistic people’s experiences of pregnancy loss to contextualise a recent autoethnography of an ectopic pregnancy (Grant, 2023). Accordingly, we conducted an online survey of this area, and maternity care more widely, identifying many inadequacies in existing healthcare (Grant et al., 2023a). However, we felt that there was a significant and urgent need for additional research in this area, with the aim of improving healthcare to reduce the current disparity in both quality of life and life expectancy of Autistic people.

Autistic Representation in Research

The importance of Autistic involvement in research is clearly articulated in Critical Autism Studies, which highlights the social nature of Autistic barriers to full involvement in society (O’Dell et al., 2016; see also Chapter 2, this volume). Accordingly, to reduce health inequalities faced by Autistic people, it is necessary for us to be front and centre in research about our health. However, Autistic adult experiences of health and healthcare have been severely under-explored in research (Nicolaidis et al., 2019; Pellicano et al., 2014); as a high proportion of Autism research funds are directed to research on Autistic children and their parents (Nicolaidis et al., 2019) or to biological differences rather than Autistic people’s needs (Emerson, 2021). Furthermore, Autism research is often carried out without relevant infrastructure, authenticity and respect (Fletcher-Watson et al., 2019), including a lack of meaningful input from the Autistic community (Pellicano et al., 2014). This is despite the Autistic community being clear that they want to collaborate on the design of Autism research (Fletcher-Watson et al., 2019; Nicolaidis et al., 2019). Furthermore, it has been argued that participatory approaches to research are not incentivised by funding bodies and in academic promotions processes (Keating, 2021). This situation means that there is insufficient evidence to argue for Autistic needs, partially accounting for policy and government services that fail to meet Autistic needs (Grant et al., 2023b).

Researchers have used a variety of participatory research approaches with marginalised communities since the 1960s. For example, in Participatory Action Research (PAR), problems and potential solutions are proposed by the community with researchers acting as facilitators; this should occur from the very beginning of the project and throughout (Smith, 2013). Similarly, in Community-Based Participatory Research (CBPR), academics and community members strive to work together as equal partners in every phase of the research (Israel et al., 2008). Over the past two decades, significant pockets of good practice in participatory Autism research have grown organically, resulting in clusters, including in the UK, Australasia and the United States of America. One of the founding groups leading the way in participatory Autism research was AASPIRE, a long-standing collaboration, established in 2006, between Autistic and non-Autistic academics and members of the Autistic community. The AASPIRE team have completed a plethora of research projects, including a focus on burnout (Raymaker et al., 2020), employment (Raymaker et al., 2023) and access to healthcare (Nicolaidis et al., 2016) using a CBPR approach (Nicolaidis et al., 2011). They have also developed an “inclusion toolkit” (see: https://aaspire.org) and practice-based guidelines for the inclusion of Autistic people as team members or study participants in research (Nicolaidis et al., 2019). Alongside this, the Participatory Autism Research Collective (PARC) is a group of Autistic researchers and activists from across the UK who aim to link those who wish to see more significant Autistic involvement in Autism research (see: https://participatoryautismresearch.wordpress.com/). Furthermore, in Aotearoa New Zealand, researchers worked with Autistic people to co-produce national Autism research priorities, identifying that research should focus on quality of life issues and move away from biological research (Emerson et al., 2023). In relation to our grant application’s originally planned focus on the maternity period, PAR approaches have been used in a limited way with a general population of participants to understand breastfeeding (Condon & Ingram, 2011).

In addition to participatory research methods, over the past decade “Citizen Science” (European Citizen Science Association, 2015) has been used to involve the public in data collection and analysis, often through created open data repositories. Much of this has not involved marginalised communities, or been based on their priorities (Curtis, 2018). That said, the Parenting Science Gang successfully completed a number of projects focused on the research priorities of parents in the “Gang” (Collins et al., 2020). To date, citizen science has been used in a limited way in Autism research (see also Chapter 14, this volume). For example, the “AutSPACEs” project is a collaboration between Autistica and the Alan Turing Institute. It aimed to co-create open source data on sensory processing for Autistic people (see: https://github.com/alan-turing-institute/AutSPACEs), but had not resulted in publications at the time of writing.

Using Creative Methods in Research with Marginalised Communities

In this section, we will describe the use of creative methods and the “ethics of choice”. Both will be described, including what they are and how they have been used with Autistic and Disabled communities. “Creative methods” are a range of qualitative techniques that incorporate methods that move beyond traditional researcher-centric data collection and analysis (Kara, 2020). In doing so, they aim to engage participants more effectually in data co-production, analysis and dissemination. A sub-set of creative methods is “visual methods”, which involve the use of some sort of artefact, such as photographs, everyday objects or participant-created documents (e.g., timelines, drawings, collages) which participants select or create based on guidance provided by researchers. These then either become data or are used as an elicitation tool during interviews to co-produce data (Mannay, 2016). This approach often has the stated aim of reducing the power imbalance between participants and researchers (Kara, 2020), although when they are tightly controlled by the researcher, they can reinforce existing power imbalances (Pell et al., 2020).

To date, the use of creative methods with Autistic people is in its infancy, although it has been used with success with young people in a range of studies. For example, Autistic teens using photo-elicitation to describe their experiences of sleeping (Pavlopoulou, 2021), life charts developed across multiple interviews to talk about school experiences and non-Attendance (Moyse, 2024) and walking interviews focused on educational transitions (Shepherd and Shepherd, 2015). In using these approaches to data production, Autistic participants shared content that was not expected by the researcher (Moyse, 2024). Furthermore, interviewers have used emojis as part of interviews with Autistic young people about their experiences of school, but also used them to understand how participants were perceiving the interview encounter itself (Peuravaara, 2021). These creative methods have also been used with young people who have learning disabilities (Shepherd & Shepherd, 2015) and who use Augmentative and Alternative Communication (AAC) (Teachman & Gibson, 2018), who have often been neglected in Autism research.

Alongside collaborative techniques of data production seen in creative methods, it has increasingly been argued that when working with marginalised groups it is essential from an ethical standpoint to offer a choice of ways to participate, known as “the ethics of choice”. In Aimee’s research with marginalised pregnant women, for example, she offered a range of visual methods approaches, including using researcher dyad interviews (Grant et al., 2019). In another study, Disabled participants were reminded multiple times that they could choose to complete a range of visual methods tasks or to bring along anything they preferred, which included medical notes and objects related to treatment being shared during interviews (Phillips et al., 2018). This approach of maximising participants’ choice has been called a “palette of methods” in co-produced research with young people focused on alcohol use where participants could choose from interviews, peer interviews, diaries, mobile phone interviews, text messaging and participant observation (Wilkinson & Wilkinson, 2018). Wilkinson and Wilkinson (2018) offered participants the choice for their data production to be synchronous (live with the researcher present) or asynchronous (prepared when alone and then shared, sometimes occurring as a conversation over time), as well as offering methods that allowed for speaking, typing and writing. The need to offer choice in how Autistic participants take part in research is well established (Nicolaidis et al., 2019). This can include the communication mode and location for interviews (Moyse, 2024), including a choice of interactive and welcoming sensory environments (Brown et al., 2016). Moreover, it has been suggested that in online interview studies, Autistic participants should be reminded that they may turn off their camera, ask for interviewers to turn off their camera, exclusively use the chat function, and also that they may use any accommodations to improve the sensory environment (Kaplan-Kahn & Caplan, 2023). The use of repeat interviews without a defined structure imposed by the researcher has also been identified as a way of building trust when discussing sensitive topics with Autistic participants (Stone et al., 2023).

Arguably, the literature on Autism research is moving beyond these opportunities to provide choice and beginning to explore notions of individualising data collection tools and even research methods to meet the needs of individual participants. This has been seen across a range of research designs. First, usually associated with a positivist research paradigm, structured interview instruments used in an evaluation of care homes utilised scales modified per participants’ usual communication preferences, such as using either a traffic light system or thumbs up or thumbs down (Long & Clarkson, 2017). Second, in interview studies with non-Autistic interviewers, lay Autistic “co-interviewers” have attended interviews and had the opportunity to ask additional questions that may not have occurred to non-Autistic researchers (Kaplan-Kahn & Caplan, 2023). Third, in an interpretative study working with a non-speaking young woman who did not have access to detailed expressive language to share her experience, Van Goidsenhove and De Scauwer (2020) used a variety of ways to understand the participant’s world. This included: emulating the participant’s interactions with objects during a planned drawing activity within a research workshop, which were “more creative” than the way those objects are conventionally handled, allowing themselves to be guided by the participant during a walk and undertaking an ongoing dialogue through filmed video clips (Van Goidsenhoven & De Schauwer, 2020).

The Development of the Autism from Menstruation to Menopause Study

We now describe the process of developing the Autism from menstruation to menopause study’s research design and methodology before applying for funding. An in-depth exploration of the application for research funding is not usually taken, but the comprehensive funding, over £2.4 M, awarded to this study, allows for reflection on the earliest part of research design. First, we describe the study lead’s, Aimee, background, in relation to both research focus on the maternity period and neurodivergence. This sets the stage for rounds of pre-application consultation, which are described in detail, in relation to an informal social media consultation and in-depth consultation with two Autistic community leaders (Kathryn and Willow), an Autistic midwife (Karen), an Autistic creative methods expert (Helen) and a Participatory Autism Research expert (Christina) and her AASPIRE colleague, Mirah Scharer. An overview of the process is shown in Fig. 4.1.

Fig. 4.1
A diagram has 3 phases.1. Aimee uses visual methods from 2014 to present and citizen science from 2021 to 2023 with marginalized communities. 2. Aimee begins researching autism with Kat and Amy, which includes understanding autistic maternity and evaluating policies from 2021 to the present. 3. Pre-application consultation.

Community involvement in the development of the autism from menstruation to menopause study

Full size image

Phase 1: Aimee Uses Creative Methods and Citizen Science with Marginalised Communities

Aimee, the study’s lead researcher, has focused her research on pregnancy and early parenting since 2012. In the main, these studies were not as participatory as she would have liked, due to constraints including being research staff, rather than the lead researcher, and leading studies with small grants and corresponding limited amounts of time. However, within these, she used visual and creative methods with the aim of making them more accessible to marginalised participants within these funding and time constraints (Mannay et al., 2017). Aimee’s research has included those on low incomes (Grant et al., 2018) and Disabled women (Williams et al., 2022). We consider this early research to be “phase 1” of developing this grant application (see Fig. 4.1). In 2021, Aimee began a Citizen Science project, Finding the Formula, working with a general population of formula feeding parents, a stigmatised feeding method (Grant et al., 2023c). Prior to the application for this funding, Aimee undertook a community consultation, resulting in significant changes to the originally envisaged research design and increasing the depth of community participation, including a significant contribution to research design, analysis and writing up (Grant et al., 2024; Jones et al., under review). We consider this Phase 1 of the development of the grant application (see Fig. 4.1).

Phase 2: Aimee, Amy and Kathryn Begin to Work Together

Aimee was diagnosed as dyslexic as an undergraduate student in 2005, aged 23. In 2019, aged 37, she was diagnosed as Autistic. In 2020, she experienced an ectopic pregnancy and the treatment provided, including emergency surgery, appeared to disregard her sharing her Autism diagnosis (Grant, 2023). In 2021, she moved to Swansea University to develop new research in the Lactation, Infant Feeding and Translation (LIFT) research centre, directed by Amy. In this role, Aimee and Amy successfully applied for funding to work with Kathryn, research director of Autistic UK, to explore Autistic experiences of maternity. The involvement of Autistic UK in this research was invaluable, as Autistic UK is committed to ensuring Autistic voices are heard in order to shape policy and research. First, we conducted a systematic review of infant feeding experiences. This review showed that Autistic people faced the same challenges as have been reported in a general population of parents, but they also faced some additional challenges (Grant et al., 2022). Following this, we were successful in securing funding to undertake a survey of Autistic people’s experiences of maternity services (Grant et al., 2023a).

In addition to a focus on maternity services, Aimee, Amy and Kathryn also undertook a realist review of Autism health passports. In the UK, the National Institute for Health and Care Excellence (NICE, 2021) recommends Autism health passports as a tool to reduce inequality of health service provision. However, our review highlighted that these tools were based on limited evidence, are under-theorised and cannot remove the barriers to equitable healthcare (Ellis et al., 2023). Aimee and Kathryn also examined official statistics, research and other reports to identify ways in which Autistic people are disadvantaged by government policy across health, education, employment, poverty and housing (Grant et al., 2023b). Throughout this time, Williams’ knowledge of Autism research and policy was invaluable in Aimee’s introduction to the research area, building on her existing strengths in participatory research with marginalised groups.

Phase 3(i): The Online Community Consultation

Alongside undertaking this research, Aimee planned to apply for personal fellowships to extend her fixed-term contract of employment. The fixed-term funding was intended to last for three years, although it was later reduced to 27 months. However, the full-time job it provided without the requirements of a substantial teaching load allowed sufficient time to conduct community consultation (Keating, 2021). Aimee was clear that she wanted to build on the participatory approach she had used in her UKRI-fundedFootnote 1 research on infant formula feeding (Grant et al., 2023c), where a community consultation prior to submitting the funding application had resulted in a significant change in research methods. The initial concept for the fellowship application was to focus on Autistic experiences of maternity care in more detail. In terms of methods, the research would be qualitative in nature because to date there is limited evidence about Autistic people’s experiences in relation to obstetric health. Furthermore, the study would be co-governed by a Community Council largely based on the AASPIRE good practice guidance for participatory Autism research (Nicolaidis et al., 2019).

Aimee knew, from the Finding the Formula study, that it was important to involve the community at the application stage (see also Chapter 10, 20, this volume). This involvement was not as in-depth as would have been ideal due to the relatively short time period between being given institutional approval to apply for the fellowship and the funder deadline. However, she did undertake an online consultation with 27 Autistic people who had been pregnant. This occurred through social media, including personal contacts, Facebook group conversations and strangers responding to Tweets. Different preferences were identified in different spaces. For example, within a closed Facebook group, Aimee received a very strong steer to use gender-inclusive (‘people with wombs’) and identity-first (‘Autistic people’) language, and this resulted in us developing the terms “Autistic People with Wombs”, to represent our target population, abbreviated to APWW. Also, in conversations on Twitter, the importance of paying members of the Community Council in cash via bank transfer, rather than providing vouchers only (which is common within the UK), received strong support.

Alongside practicalities for ethical study design, in one-to-one discussions, we identified a preference for interviews to be conducted online rather than in-person, such as at the University, the participant’s home or another location the participant chose. In these discussions, Aimee was able to easily understand the discomfort arising from an unknown person coming to her home due to her positionality as an Autistic and Disabled person who has had official interviews relating to claiming benefits conducted at her home (see Grant, 2024). In these situations, it can be very hard for an Autistic person to advocate for their needs, in comparison with online encounters, when closing a window on a computer makes an interaction stop immediately. Aimee was also aware that should Autistic researchers be appointed to the researcher jobs assigned to the project, face-to-face data collection could be significantly more energy intensive, resulting in the need to reduce the number of participants who could be accommodated within the study, as the funder imposed a limit of four research assistants. Alongside this preference, the need for flexibility in relation to whether interviews should be conducted with the participant and researcher both being in the same space at the same time (synchronous) or if there should be the opportunity for participants to share information in their own time and space (asynchronous) was identified. Building on this, the need for flexibility during interviews was identified, to allow for a change in communication mode or synchronicity if it would be more comfortable for the participant.

When discussing the data collection/production strategies, Aimee was keen to use “creative methods” as a tool in order to allow participants to share the things most important to them and to reduce the researcher’s role in shaping the data (Kara, 2020). Having described this in the pre-application consultation, responses were positive, although it was noted that sufficient time should be allocated to ensure that participants understood what was expected of them so they “did not feel stupid” for “making mistakes”. The importance of creative methods meeting participants’ needs has been long acknowledged (Mannay, 2016), and the same tool can be used in a wide variety of ways, changing the feel of the interview significantly. For example, the content added to timelines, designed to show changes over a particular period of time, can be entirely controlled by interviewers, or it may be done in isolation from the interview by participants who have a large degree of freedom regarding what to include (Pell et al., 2020). It was important to Aimee and those involved in the pre-application consultation that the creative methods tools could be used flexibly, potentially having unique tools for each participant. Furthermore, the way in which these tools should be used should be similarly flexible to reassure participants that they were “not doing it wrong”. This included allowing participants to: do the creative methods task together with the researcher as part of the interview, or on a separate occasion; use any other way of gathering their thoughts; or not undertake a creative methods task at all, with the interviewer gently guiding the direction of the conversation using the guidance accompanying the creative methods task as a loose shared topic guide. Furthermore, it was decided that we would not insist on creative methods materials created by participants, such as timelines or mind maps, being shared with the researcher, as their purpose was to elicit participants’ narratives.

The one element that was consistently commented on across platforms was the focus of the study being limited to pregnancy only. On all three platforms, Aimee received comments of “but what about…” this other really pressing gynaecological health issue. These included specific conditions like Pre-Menstrual Dysphoric Disorder (PMDD), Polycystic Ovarian Syndrome (PCOS), endometriosis, painful periods and menopause. At this point, the suggestion to broaden the research focus away from maternity, which, Aimee knew in-depth, was very worrying, as other Autism researchers have described (Keating, 2021). For example, there would not be time to learn enough about these conditions before applying for funding, and Aimee was concerned that funders may decide that she was not a credible candidate because of a lack of publications related to wider reproductive health issues. Regardless, to be true to the ethos of being guided by the community, a complete shift in the study’s boundaries occurred to cover reproductive health across the life course. To bolster her credibility, Aimee reached out to a range of individuals and organisations who had experience of undertaking research in these areas, and clearly described the expertise of these individuals on the application form.

Phase 3(ii) and (iii): Pre-application Discussion with Autistic Community Leaders (A Paid Role for “Lay” Members)

Within the UK, the research arm of the publicly funded National Health Service (NHS) states that it supports the inclusion of lay people in research related to their health, including providing funding for lay involvement in developing grant applications. Accordingly, Aimee contacted Health and Care Research Wales, Aimee’s local NHS research organisation, and asked if they would fund some time for Kathryn, who Aimee had already worked with, to be involved in the development of the study. They agreed to fund her time at £25 per hour, per Involving People guidance, on Kathryn's completion of some forms. Kathryn introduced Aimee to Willow, an Autistic woman and director of many Disability organisations, including Autistic UK and Fair Treatment for the Women of Wales (FTWW). FTWW are Wales’ leading organisation committed to supporting accessible and safe reproductive healthcare. In the absence of a Women’s Health Plan, FTWW worked co-productively with at least 60 organisations to develop a strategy document to put to the Welsh Government. This resulted in the development of the Women’s Health Plan for Wales, which has been developed co-productively with volunteers across Wales. Fortunately, Willow agreed to be involved, and Health and Care Research Wales agreed to also fund her time. Aimee had multiple conversations with Kathryn and Willow over a period of around a month, which included them making suggestions regarding research design, relevant literature and policy documents. The discussions used multiple communication platforms to ensure it met the communication preferences of all. For example, a three-way messenger conversation between Aimee, Kathryn and Willow was used to discuss small details on a frequent basis. Both reviewed the grant application in full. This would not have been possible (in an ethical way) without the funding from Health and Care Research Wales (see also Chapter 19, this volume).

Alongside this, Aimee and Karen began a conversation on social media. Karen is an Autistic Registered Midwife who was undertaking a Florence Nightingale Foundation scholarship at the time, to improve care for Autistic people during the maternity period. Due to Karen being Autistic herself, she was able to identify how inaccessible and inequitable UK maternity care can be for Autistic women and wanted to do more to rectify this imbalance. Karen shared her experience of intervention development, and barriers to implementation within a UK healthcare context and provided much needed contextual information from her role as an Autistic health professional. It was decided that Kathryn and Willow would join the study’s Community Council and the study steering group, and that Karen would only join the study steering group, due to her expertise as a health professional.

Discussion

Our chapter has reinforced the importance of including Autistic people in research about Autistic health, and how that is potentially even more important when it comes to considering APWW. We outlined some existing good practice in co-produced Autism research, including referencing existing high-quality guidance in participatory Autism research (Nicolaidis et al., 2019). Following this, we described citizen science, visual and creative methods and early work on “the ethics of choice”, identifying examples of good practice from Autism research. The substantive content of the chapter then focused on what later became the Autism from menstruation to menopause study, and how it began as a community consultation to ensure the involvement of Autistic people in the research design from the outset. This also fits with some of Aimee’s most recent research experience using citizen science and creative methods and her focus on social justice. However, we did encounter challenges to community participation.

Autistic people were involved in the development of our grant application, primarily through two Autistic community leaders, Kathryn and Willow, and Karen, an Autistic midwife. Although we did undertake a pre-application consultation, this was somewhat limited and was mostly limited to short conversations with 27 Autistic people who had been pregnant. This interaction was limited because of the lack of funding available to pay for the time of those people involved, meaning that Aimee felt uncomfortable to ask for too much from them. The availability of funding for Kathryn and Willow’s time from Health and Care Research Wales removed this barrier. However, both had to complete paperwork to register as Patient and Public Involvement representatives, and completing this paperwork could be challenging for many neurodivergent people. Regardless, we recommend that Autism researchers seek funding for pre-application consultations and support Autistic people to complete any paperwork required to access funds.

Our experience highlighted that a model of research funding that prioritises developing detailed grant applications before being awarded funding is a barrier to involving the public as partners from the outset, as has previously been reported (Keating, 2021). However, the application form completed for this study was relatively brief following the Wellcome Trust’s restructuring of their fellowship schemes. We believe that reducing the length of application forms will allow researchers time to conduct greater public involvement activities. It may also be that the use of small pots of funding can be used to undertake more in-depth consultation regarding developing new research studies, although at present, there are limited funds available for this purpose in the UK, and these are not available from many major health research funders.

Within our consultation, members of the Autistic community strongly recommended some changes to our application. First, they insisted on gender-neutral language, which is appropriate in relation to Autistic people due to the higher proportion of LGBTQIA + (Hall et al., 2020). We may not have used this language in the grant application if the pre-application consultation had not been so strong on this point, for fear of a negative response from reviewers. Being able to say that the community chose this language provided a clear rebuttal in the case of a negative response. A second major change was to change the period of focus, from only obstetric health to include all gynaecological and obstetric health, “from menstruation to menopause”. Aimee’s research and publication history were largely concentrated in the perinatal period, and shifting the focus of the research period to a much broader area could have been considered a weakness by reviewers. Again, this was defended by making it clear that it was a community preference and ensuring that sufficient expertise was held on the study’s steering committee. The peer review comments and questions at interview did not focus on either of these areas, although they were covered in the presentation required at the beginning of the interview, again providing a way to show that the decisions had been made with the community.

Our experiences with this project have led us to develop a checklist for involving Autistic people in pre-application consultations (Box 1). Although this may not be a perfect fit for all funding applications, we hope that this may be valuable to other research teams.

Box 1: Checklist for Involving Autistic People in Pre-application Consultations

  • Identify opportunities for paying community members at the outset:

    1. o

      Ensure that those who are taking part know how much funding is available and how and when this will be paid.

    2. o

      Where paperwork needs to be completed to receive payment, support should be provided.

    3. o

      Where payment is made through bureaucratic systems, researchers should check that people have been paid, and request updates from the funding organisation if there are delays.

    4. o

      Ensure that community members’ welfare benefits (where received) are not negatively impacted by being paid—provide guidance and signposting regarding how to ensure this does not happen. Likewise, do not assume that somebody cannot accept payment due to receiving welfare benefits.

  • Consider the timescales available and tailor your consultation methods appropriately:

    1. o

      A social media consultation can be useful for finding answers to quick questions.

    2. o

      One-to-one discussions (using a range of communication methods) can add depth to these answers and may be particularly useful with Autistic co-researchers.

    3. o

      Group discussions require significant coordination to align availability and may result in a lot of energy being expended before considering the project design, and may not suit the communication preferences of all Autistic co-researchers.

    4. o

      Combining methods may add value but needs to be carefully planned.

  • Ensure that you provide flexibility in how people can take part in the pre-application consultation:

    1. o

      Be ready to respond to interaction across multiple platforms (email, WhatsApp, social media direct messaging) whenever possible, including outside of your usual working hours, to capitalise on momentum.

    2. o

      If you are seeking a full review of your application, this may be best achieved in a collaborative meeting, for example using Zoom alongside talking through various aspects, rather than expecting written comments on the document.

    3. o

      Use straightforward language and ensure any required “jargon” or acronyms are fully explained in the first instance.

Conclusion

The “Autism from menstruation to menopause” project was shaped by a pre-application consultation, including relatively superficial conversations on social media and in-depth collaboration with three Autistic people, two community leaders and a midwife. Wherever possible, researchers should involve members of the public with lived experience in the development of their funding applications. Where researchers are not able to access funds to pay community members for this time, researchers should consider how they can involve the community in a way that is at low cost (in terms of time and effort) to the community whilst still allowing them to have a voice. Where the community suggests significant changes to a research project, research teams should consider if this is something that the team can accommodate in a high-quality way. Researchers should take advantage of funding that is available to pay those involved in pre-application consultations, from funders or health authorities. Furthermore, funders should consider making funds available for pre-application consultations to ensure that researchers are able to appropriately compensate community members for their time.