Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives | Health Research Policy and Systems

As Fig. 1 shows, the analysis resulted in a thematic map of advisory engagement experiences that focused on four primary themes: co-production elements, collaboration processes, project insights and emotional experiences. Table 2 provides a summary of primary, secondary and tertiary themes. Themes were generated in response to direct questions about a particular topic (for example, co-production) and were also embedded throughout participants’ responses. Further, the themes from autistic and non-autistic responses were not distinct as both groups generated parallel responses.

Theme 1: co-production elements

Co-production elements refers to the overall guiding structure of how the project team interacted with each other and completed project tasks. Five co-production elements were identified: organization, flexibility, accessibility, diversity and inclusion and compensation.

Organization refers to the research team’s ability to plan, coordinate and manage project activities that supported meaningful and sustained engagement. Advisors described the overall process as well-structured, with clear communication about expectations, timelines and compensation at the outset of AM-HeLP, while routines emerged around monthly meetings, communication and tasks. One advisor shared, “It was very clear to me before starting, you know, regarding what was expected of me – consent, confidentiality, all of that” (A-2). Others appreciated that meeting agendas and reminders were provided in advance, which helped them prepare and stay engaged. Advisors noted that providing meeting agendas beforehand helped prepare them for meetings and remind them of the guidelines. As one participant noted, “Having agenda set ahead of time, especially having specific questions set ahead of time gives us time to think about it… I feel like those meetings were actually productive” (A-12).

While the structure and communication were generally praised, a few advisors noted occasional challenges navigating the open-ended nature of some tasks. For example, one advisor shared, “I did not find the questions made it clear what was actually wanted… It was not always relevant or straightforward” (A-11). Still, many participants credited the project’s overall organization and leadership with contributing to its success. One advisor summarized, “[Facilitator was] very clear in things – explaining how things would work and what we would be doing. I really liked how clear [the facilitators] were about what you were looking for” (A-19).

Flexibility reflects the research team’s ability to adapt to advisor needs and project conditions. Advisors noted the team’s efforts to recognize and adjust to, differing perspectives and to support their needs, sensory sensitivities and general life circumstances. Further, they described the project recruitment as clear and easy, and valued the opportunity to submit their application in different ways, as well as the variable options for participation, such as attending optional group meetings, meeting one-on-one, or strictly providing feedback on the Guide without participating in the group meetings. One autistic advisor remarked:

“I appreciated that there were so many different ways to participate, and that you were still, you know, you’re still included in the project. But, that you also do not have to feel like you are letting somebody down because I know when so much is expected of me, it kind of makes me kind of like shut down and I cannot do anything. But knowing [the meetings were] optional, it took off a lot of the pressure from me.” (A-16)

Further, advisors commented on the different formats available for feedback (for example, PDF or Word documents, shorter sections and/or different font sizes) and their impact on accessibility, as well as the team’s responsiveness to new feedback approaches. One autistic advisor (A-10) noted that the team’s openness made them feel supported and heard, strengthening their trust in the team and the co-development process.

Accessibility refers to the project design factors that allowed advisors to understand and participate in the process authentically. Two aspects of accessibility were emphasized: project format and communication methods.

Project format advisors highlighted the online format of the project as accessible because it did not require them to travel and navigate new spaces, they were able to participate wherever comfortable, and it permitted various accommodations (for example, audio-recorded meetings). Specifically, the Zoom meeting platform was considered highly accessible:

“…being able to share slides and see on screen what we were being asked, because that’s something I struggle with a lot. If we were given a prompt, and it’s not in writing, I forget it. So, it was very helpful to have that available.” (A-2)

Nonetheless, it should be noted that the version of Zoom used for meetings did not allow closed captioning – a feature that could have enhanced the project’s accessibility: “I do appreciate like captions or closed captions. I would appreciate that, even if we do not say it out loud, I find it just makes my day easier when I have access to it” (A-12). Advisors also stated that the Guide content and format were carefully considered, adhered to Web Content Accessibility Guidelines and incorporated universal design elements, such as plain language, large font, paragraph chunking and appropriate colour contrasts.

Communication methods advisors valued the ability to communicate in different ways and appreciated the team’s consideration of their communication preferences, as this was a unique experience for many. Advisors also appreciated the use of several media to remind them of what happened during meetings, such as summary emails, PowerPoint slides and audio recordings and the ways the research team accepted their communication styles. For instance, when one advisor had difficulty communicating verbally, the research team accepted photos of their handwritten feedback:

“I will probably never be on a project like this again. This is how it should be. Like being able to participate on your own terms; like me sitting down and writing things out and taking pictures and sending them to you. Like, a lot of professional service would never put up with that. But yeah, that is just how [the research team] accommodated disabled persons.” (A-15)

Most advisors commended AM-HeLP for its sizeable representation of autistic people (80% of the advisory group) and noted that similar projects would often only include one or two autistic people. One autistic advisor emphasized the careful inclusion and involvement of autistic people, stating that “everything [on the Guide] had to pass through an entire panel of autistic people and come to a consensus on it!” (A-7). Advisors felt that autistic perspectives and voices were centred in the process and this approach made them feel valued:

“This differed from many projects, in that, for the first time, I felt like my voice and the voice of other autistics were the primary voice. We were the most important – our voices were valued and had the final say on a lot of stuff. And that is really how it should be.” (A-2)

While many reported that diverse representation and involvement is important in creating an authentic guide, they also noted areas for improvement, as most advisors were white, used spoken communication and resided in Ontario or British Columbia (two most populous English speaking provinces).

Advisors valued being adequately paid for their work. This compensation motivated them to maintain and improve their participation in the project. In similar projects and groups, the cost of participating is often overlooked and advisors are unpaid, resulting in participants feeling devalued and exploited. Monetary compensation was emphasized as an essential part of AM-HeLP, making advisors feel respected and fostering genuine participation. Notably, two aspects of compensation were discussed: fairness and value.

Fairness: most advisors felt that the amount received as payment was fair and appropriate given the work completed and some valued having the choice of how and when they were paid, as it provided a sense of agency and control. For example, one autistic advisor explained: “We were paid so equitably, and given the choice of how to be paid. So, some people wanted it as a lumpsum, and [I wanted] this monthly, like a paycheck. It felt really good to see that every month” (A-15). Although payment was not determined by a specific level or type of contribution, two advisors noted that an itemized explanation of payments would have been preferable to help gauge how much time should be allocated to each task. As one advisor clarified: “If you had a per hour breakdown of how much you’re compensating people…it would set a clearer expectation on the time commitment” (A-24).

Value: monetary compensation during AM-HeLP financially benefited advisors and affirmed their place as valued members of the project. Advisors spoke about how payment provided the freedom to attend to their basic needs, engage in self-care or care for loved ones. For some advisors, the project honoraria was their only income source: “This was my number one source of income over those two years. It was a really nice feeling to be paid for my labour, for my emotional labour, and to see it going towards good use” (A-2). Instead of feeling like tokens or names on a project, receiving appropriate payment made advisors’ feel respected as human beings and subject matter experts, and left them with a newfound appreciation for their time and work:

“The one thing that allowed me to do this was that my labour was being paid for and appreciated. And I saw that appreciation in cash and having an income; it gave me dignity. And it motivated me to make sure [the Guide] was as good as it is.” (A-13)

Theme 2: collaboration processes

The relationship between the research team and the advisory group was fundamental to the project’s completion and success; AM-HeLP relied heavily on advisors’ expertise and lived experiences to inform its goals and MHL products. Six aspects of collaboration processes were noted: safe space, trust, respect, connection and shared experiences.

Advisors reported that the research team fostered a safe environment with established boundaries, allowing them to be vulnerable and discuss their past experiences. For example, when discussing sensitive topics, advisors were able to leave or mute the meeting until they could return and many appreciated that they could talk about any topic or disagree without fear of exclusion. As one advisor explained, “It was incredibly safe… It is safety in a conversation that is uncomfortable to have [and] is hard to find” (A-9). Another reflected on the research team’s responsiveness, noting, “[The team was] very comforting and supportive of all of us… sometimes we have more trigger points or different things, but… [the team was] pretty good with all of us” (A-1).

At the same time, some advisors described challenges navigating emotionally charged group dynamics. One advisor expressed that “a lot of meetings were focused on helping to manage each other’s crises,” noting, “it got very easy to derail them… There was just a lot of emotions in those meetings” (A-16). Others highlighted difficulties in communication, including hesitations around when or how to contribute: “I am definitely somebody who struggles with knowing when to speak… I felt like I was having a hard time, like jumping in and actually saying something” (A-16). A few advisors also shared that they sometimes felt constrained in what they could share: “There were times I felt like I could not say what I wanted to say – for fear of offending or triggering someone… that was very frustrating” (A-2). While these reflections were framed as personal challenges rather than criticisms of the group, they nonetheless point to the emotional complexity of co-production spaces and the need for continued attention to group process, emotional safety and facilitation.

Building and maintaining trust throughout AM-HeLP was necessary for authentic collaboration. Most advisors indicated that the development of trust required time, relationship-building and transparency and was particularly important given that many advisors reported that they had previously been hurt by organizations they felt had disregarded and exploited autistic voices. In fact, three participants questioned which organizations were endorsing the project and its potential connection with organizations viewed as harmful by some in the autistic and autism communities. As such, building, rebuilding and maintaining trust throughout the project involved transparency and ongoing efforts to inform and consult. As one autistic advisor noted, regular communication and encouraging uncomfortable discussions were key to AM-HeLP’s success:

“We took our time and what I learned to do was trust the process. Over time, I could trust the people in charge. That is the most important part, building the trust; because in the autistic community there is not a lot of trust.” (A-15)

Advisors noted that the team’s respectful approach to collaboration made them feel heard and encouraged in the process. Specifically, advisors reported that they were treated as people and valuable members of the project and not as tokens. Mutual respect was fostered by getting to know advisors personally, recognizing their identities and lived experiences (for example, the use of correct pronouns and identify-first language), understanding their community and what they value and acknowledging their contributions. As one participant describes, the project’s respectful approach was encouraging:

“I always felt like our points were well received, we’re treated with dignity and respect. And I feel like what we said was put in the Guide, I truly feel that this is a Guide that is representative of our community in what we put in.” (A-12)

AM-HeLP also offered advisors the opportunity to communicate and build relationships with others. For instance, many enjoyed connecting directly with the research team, other autistic people and caregivers with a shared interest in advocating for improving the mental health of autistic adults. One autistic advisor recalled:

“I really, really enjoyed it. I looked forward to it. It s always good to be part of a conversation with like-minded people. Especially working with something that I know is so badly needed, with valid useful information on autism-related mental health.” (A-14)

Advisors also noted the timeliness of these social connections, as the COVID-19 pandemic had impacted their ability to see loved ones, their work or available supports and the intensity of their mental health challenges. Alternatively, some advisors regretted missing or not engaging in group meetings, noting that they did not develop the connections they had hoped for. Some reported feeling disconnected during meetings or disengaged from the process because of the individualistic nature of the project tasks: “I was off doing my own thing, everyone else was off doing their own thing. And then once a month we would come and try and smush those different pieces together” (A-2).

Advisors noted the importance of witnessing and providing shared experiences in meetings and the Guide, as they helped the group to better understand and appreciate different viewpoints and resulted in a MHL product that depicts the honest realities of autistic people with mental health difficulties. Candid conversations about mental health and the systemic barriers were described as affirming, especially when shared among advisors across the country. For some, these shared experiences made the project feel like a ‘community’:

“There really is a community of people with shared experiences. And when I came to this project, it was from a very, very isolated and lonely place. And understanding the shared experience was really huge. The honesty and the shared experience of multiple mental health issues, and struggles and challenges that so many people face was incredibly helpful, because like I said, we felt utterly isolated.” (A-9)

As one autistic advisor described, it was important to see lived experiences depicted in a national resource:

“I am looking at the word here [referring to the Guide], emotional suffering, you can tell that autistic people helped write this because it speaks to me, like I understand the words that I read, because so many of these are my experiences – you know, exhaustion, isolation.” (A-15)

Theme 3: project insights

Project insights refers to the deep understanding of new concepts and the clarity gained by advisors due to their participation in AM-HeLP. Specifically, two insights were described: new knowledge and reflection.

New knowledge refers to the new information advisors acquired from AM-HeLP products and the advisory group, such as knowledge about different mental health strategies, new concepts (for example, “autistic oxygen”) and available mental health resources (for example, autistic blogs). For example, one autistic advisor said:

“I actually found myself learning a lot, that I had not heard about before… considering aspects of mental health that I never had before. And also seeing how I’ve been applying them or how I can apply them in, in my life. I had not really thought of like doing the jokes as a way of upholding my positive mental health or building it up.” (A-4)

Advisors also gained perspective from other participants who discussed systemic barriers, while caregivers learned about what autistic advisors value and their ideas for improving autistic well-being:

“I get to learn experiences from key advisors brought to the table and understanding not only where they came from and who they are, but as a person with their own thought and process of how it should look like when it comes to autistic well-being.” (A-10)

Reflection refers to advisors’ exploration of mental health in relation to AM-HeLP and the Guide. Advisors noted that the co-production process helped them learn and reflect on past relationships and situations – they described an added perspective that aided in understanding of past experiences. Autistic adults also reflected on the past services they received: “it was an eye-opening perspective that I could have asked for more autism-led services when I was younger” (A-1). Some caregivers discussed how participation made them reflect on the mental health experiences of their adult children or sibling for the first time, with one noting that it was a privilege to listen to autistic advisors. Many felt that they were doing a “better job as a caregiver and ally” (A-8) after participating in AM-HeLP and reported improvements in their ability to communicate with, and listen to, their autistic adult children.

Theme 4: emotional experiences

Emotional experiences reflect the affective impact of participating in a project concentrated on autistic mental health. Emotional experiences were a significant factor in advisors’ satisfaction with their engagement in co-production and they centred on two secondary themes: positive reactions and emotional labour.

Positive reactions capture advisors’ positive feelings about engaging in AM-HeLP and were made up of four components: validation, support, pride and enthusiasm. Advisors described being optimistic about the project, the research team, group members and the potential benefits of this work. They were proud to be advisors because the work was meaningful, and the human-centred approach differed from other advisory experiences encountered before.

Validation: advisors described feeling heard, understood and acknowledged throughout the project, both in terms of their autistic experiences and mental health experiences. One autistic advisor (A-12) explained that their experiences were confirmed by listening to others. Similarly, one caregiver advisor reported feeling validated “from listening to the other parents, particularly whose kids were also late diagnosed” (A-9). Further, validation and legitimacy came from seeing their experiences reflected in the MHL products. For example, one autistic advisor said:

“We’re still facing a lot of invalidation out there, whatever part of the spectrum you’re on. So, having a document like this that normalizes [our experiences] and puts things in simple language. Someone can point to it and say, this is what I’m going through. It is refreshing.” (A-20)

Support: within the project, advisors also gained direct and indirect support through encouragement, reassurance and acceptance. Specifically, they spoke about the research team’s availability to hold one-on-one meetings, offer feedback and provide brief “check-ins” and the sense of community indirectly developed by working together for a long period of time. For example, one advisor noted:

“When you bring in a group of people who are living, family crises, mental health crises, a pandemic. And bear every day literally what you’re studying. It is very hard to take away the personal to get to the task at hand – I do not think anyone was looking for a support group, but the fact that you opened up the opportunity to share some of that, because I think many of us need to put that out there before we can move on to the logistics. So that humanity was, I think, just a beautiful thing.” (A-9)

Pride refers to advisors’ deep satisfaction with their involvement in AM-HeLP. Many were proud to be advisors and co-authors of the Guide and felt honoured to be involved in work benefiting the autistic community. The integration of advisor suggestions validated their experiences and instilled a willingness to disseminate the MHL resources within their network. Further, advisors’ participation inspired hope for the potential usage of the Guide and its impact. One advisor, for instance, expressed that the Guide should help inform future programs and initiatives:

“[The Guide] is going to help give a window into what people are looking for and what people want. All of these things lead to better usability and practicality, and informing many people in the field as to what is happening in the field.” (A-8)

Enthusiasm: advisors felt enthusiastic about the project, expressing excitement and joy during its co-creation and dissemination. Advisors were excited that over 20 autistic adults made up the advisory group and that their perspectives were genuinely heard and reflected in the completed products. One autistic advisor said: “It has just been a joy, and a lot of us have not had this type of experience working with organization or with other researchers” (A-12).

Emotional labour refers to the effort expended by advisors to manage project-related emotions. Advisors described emotional labour related to two tertiary themes: project content and participation process.

Project content: advisors indicated that sharing or recalling traumatic lived experiences and hearing or reading about others’ mental health challenges required considerable emotional effort, as they reported experiencing these as traumatizing and triggering at times. Indeed, one advisor reported needing participation breaks: “I had to take a moment and step back and be like, ‘Wait a second, this is almost too much for me’ and I think a lot of that though, was just emotional content. How emotionally loaded [each chapter] was” (A-5). Some advisors also needed to step away or log off from meetings when distressing stories were suddenly brought up: “[In] the video chats, sometimes people would get into very sensitive material, and it was really triggering for me” (A-16).

Participation process: similarly, advisors exerted effort in contributing to AM-HeLP, as it demanded active engagement with the content and in meetings. Accordingly, advisors reported experiencing burnout, with a few noting that it sometimes took longer than expected to complete required tasks. For example, one advisor said: “Sometimes, the chapters were really long. And because of my reading comprehension problems, I was just a little bit overwhelmed” (A-16). At times, the online format posed a barrier to participation owing to its sensory demands and potential for sensory overload. For instance, advisors felt frustrated in meetings when multiple people were talking simultaneously or over one another, while others experienced “zoom fatigue” owing to the remote transition of their personal, work and school responsibilities during the COVID-19 pandemic.