The Codesign and Initial Evaluation of a Peer Support Program for Autistic Young Adults

Abstract

Postdiagnostic support can be useful for any autistic person, but it may be especially important for young adults (16–25 years) who may be negotiating their autistic identity while also navigating the transition to adulthood. Yet there is a lack of tailored support for this group. In this study, we document the process of codesigning a six-session online peer support program aiming to support young people to navigate their autistic identity in the transition to adulthood. Through documenting discussions within our research team, we provide three key reflections underpinning the success of our codesign process as follows: (1) maximizing success through preparation; (2) facilitating effective, respectful communication; and (3) empowering meaningful collaboration. We also collected qualitative feedback from program attendees, which we analyzed using reflexive thematic analysis. This feedback highlighted how attendees appreciated the opportunity for self-discovery and to develop their understanding of autism. They also valued the social connections formed during the program. Finally, they said they benefited from the practical strategies they developed. Overall, these insights contribute to the growing body of knowledge on participatory autism research and highlight good practices when meaningfully involving autistic people in shaping the support programs that directly impact their lives. The peer support program, Understanding You, Discovering You, warrants further, more rigorous evaluation in future studies.

Community Brief

Why was this program developed?

It is important to design and test support groups that aim to improve the well-being of autistic young adults (ages 16–25) during the transition to adulthood.

If support groups are not codesigned, they are less likely to be considered acceptable by autistic people. By codesign, we mean different groups of people (e.g., autistic people, clinicians, researchers) working together to create something.

In this study, our team of autistic young adults, clinicians, researchers, and an autism charity representative codesigned a program to support autistic young adults during the transition to adulthood. The program was developed because a UK charity—Ambitious about Autism—identified that there was a need for specific support for autistic young adults.

What does the program do?

The program—called Understanding You, Discovering You—is designed to help autistic young adults embrace and understand their autistic identity. The program is designed to be delivered by two facilitators, one of whom is autistic, and includes up to 10 autistic young people at a time. Autistic young adults decided the content of the program, and how it was organized.

How did the researchers evaluate the development of the new program?

In this article, we report our team’s reflections about involving autistic young adults in the program’s design, to guide the creation of similar projects in the future. We also gathered initial feedback about the program from program attendees to understand their experience and learn how to make the program better in the future.

What were the early findings?

We identified the following three main things that were important when involving autistic young adults in the codesign of our program: good preparation, effective and respectful communication, and making sure the collaboration is meaningful. Program attendees reported that they liked learning about autism, found value in the social connections they made, and gained practical skills from the program. These findings tell us that codesigning programs with autistic people is a good way to make sure they are useful.

What were the weaknesses of this project?

One weakness of this project was that only a small number of people filled out our postprogram evaluation, which meant that we did not get as much feedback as we would have liked.

What are the next steps?

Our next steps will involve adjusting the program based on participant feedback before doing a larger and more rigorous evaluation of the program.

How will this work help autistic adults now or in the future?

This work provides a valuable example of how diverse teams (which include autistic young adults) can work collaboratively to codesign support programs for autistic people.

Accessing an autism diagnosis can be a lengthy, challenging, and complex process for autistic people and those who support them.^1–5 Certain groups of autistic people may be at particularly high risk of being missed or misdiagnosed. These groups include women and girls, those without intellectual disability, and those from minority ethnic groups.^6–10 Yet, even those who “fit” with clinicians’ expectations of what an autistic person “looks like” can face barriers, including the fear of not being believed; the financial cost associated with accessing a diagnosis; a lack of adequate clinician understanding of autism; and stigma.^5,11 Moreover, there is variability in the availability and accessibility of services across different geographical regions, resulting in an unequal provision of services.^12,13

An autism diagnosis can provide validation, understanding, and self-compassion^14,15 while also being a gateway to services and supports.² Yet the present landscape of postdiagnostic support falls short of meeting the needs of autistic people and their families.^2,11,16–20 Autistic people have called for increased availability of ongoing formal postdiagnostic support that provides practical guidance and education, connection to other autistic people, and a sense of self-understanding and empowerment.^21–23

Postdiagnostic support may be especially pertinent for autistic young adults (aged 16–25 years). There are significant developments in one’s identity during this time of life, as individuals establish their values, beliefs, and aspirations, ultimately shaping their sense of self.^24–26 Societal norms and expectations often influence these values and beliefs, and it can be challenging to embed a stigmatized identity within one’s sense of self.²⁷ This complexity is reflected in research examining identity development in autistic young adults, with some autistic young adults being “proud” of their diagnosis, some feeling “marked” by their diagnosis, and others reporting a combination of both positive and negative emotions.^28–30 Difficulties in reconciling one’s autistic identity are associated with poor mental health outcomes.³¹ Furthermore, the transition to adulthood more broadly is considered a challenging time for autistic people, with many facing barriers to meaningful social connection, a reduction in support and services, and poor outcomes such as unemployment.³² As such, there is a strong case for targeted support during this period.

Evaluation of support programs for autistic adults provides insights into potential opportunities. Crane and colleagues^33,34 evaluated an autistic-led peer support program for newly identified or diagnosed autistic adults using semi-structured interviews. Participants reported joining the program to learn more about themselves, gain a sense of empowerment, and develop practical strategies for navigating a predominantly nonautistic world. Initial evaluations of the program were promising. Participants made positive connections with others and felt better able to recognize their strengths and manage their challenges. Crompton and colleagues³⁵ reported similar findings via semi-structured interviews with 12 autistic adults about their perceptions of postdiagnostic support. Their findings highlighted the importance of connecting with like-minded autistic people, as well as the practical nature of support. Both studies^33–35 emphasized the need for long-term continued support postdiagnosis. While these preliminary studies highlight the potential opportunities of postdiagnostic support programs, from the perspectives of autistic people themselves, there remains a lack of tailored programs for autistic young adults.

Insights and perspectives from autistic people are essential in designing effective tailored support programs. Codesign is a participatory method that redresses power imbalances by including stakeholders as equal partners in the creation of a product, service, or intervention that they themselves would use.^36,37 The potential opportunities of codesign, for both individuals and design outcomes, are vast. For example, when used with other groups, the codesign of services and interventions has been shown to promote autonomy, self-advocacy, and empowerment for codesigners.^38,39 Furthermore, by bridging the gap between researchers, practitioners, and service users, codesign results in more authentic and meaningful support.^38,40 Such participatory approaches have been widely called for within autism research and practice.^41–44

In this study, we document the codesign of a peer support program for autistic young adults. Given the growing need for improved reporting of inclusive practices and evidence of their effectiveness,⁴⁵(p94) we provide author reflections on the success of the codesign process.⁴⁶ We also provide initial qualitative feedback regarding the program, from the perspective of program attendees,^33,34 to provide an indication of whether the program warrants further, more rigorous evaluation.^47–49

Emerging Practice

The UK charity Ambitious about Autism identified a significant lack of postdiagnostic support for autistic young adults.⁵⁰ Aiming to reduce this gap in support, the charity developed a proposal to codesign a peer support program for autistic young adults. Feedback from autistic Youth Patrons at Ambitious about Autism was used to develop a proposal⁵⁰ and acquire philanthropic funding to undertake this work. The acquired funding was used to commission the present research and a diverse project team was assembled. The team was as follows. First, the team included representatives from Ambitious about Autism, including ten autistic young adults (including LA and LP) who codesigned the program, members of staff who facilitated the codesign sessions, and BR, who led the codesign process. Second, the team included four autism researchers who do not identify as autistic (JD, WM, KC, and LC). Two of the researchers (KC and WM) are also practicing clinical psychologists who are experienced in working with autistic young adults in mental health settings. Several authors (BR, LA, LP, WM, KC, and LC) have secured funding for and/or are involved in a further feasibility trial of the program outlined in this article.

Ten autistic young adults who were either involved in Ambitious about Autism’s earlier postdiagnostic support work⁵⁰ or responded to an advertisement from the charity were selected to be part of the codesign panel. Members of the codesign panel received a £25 voucher for each codesign session they attended. The codesign process involved three 90-minute sessions, hosted virtually via Zoom, between November and December 2022. Sessions were attended by members of the codesign panel and were facilitated by three members of the Ambitious about Autism team. Panel members could choose whether they had their cameras on during the sessions. Panel members could also choose how they wanted to contribute to each activity (e.g., verbally, using the chat function, anonymously using Jamboard or Mentimeter), if at all. All members of staff from Ambitious about Autism had their cameras on for the duration of the sessions. Panel members were sent an agenda at least three days before each session (see Supplementary Materials A for an example), alongside a one-page profile of each member of staff from Ambitious about Autism who would be present at the session. The profiles contained the staff member’s name, preferred pronouns, a photograph, and more information about them (e.g., their job role and interests outside of work). Each session used a variety of engagement tools, including Microsoft PowerPoint, Google Jamboard, Google Docs, and Mentimeter. While panel members were encouraged to attend each session, the average attendance was 73%, with approximately seven panel members attending each session. Where members did not attend a session, they received a summary worksheet and were able to input their feedback via email. Panel members were also sent optional tasks to complete following each session (e.g., to think of potential names for the program). Following the three codesign sessions, there was one 60-minute session in which two clinical academics (KC and WM) provided feedback on the codesigned program (which was titled Understanding You, Discovering You during the codesign sessions). Table 1 provides a summary of each codesign session, including the objectives, content covered, tasks completed, and outcomes achieved. Additional information can be found in Supplementary Materials B.

Table 1.

Summary of Each Codesign Session

Session	Attendees	Meeting objectives	Content covered/tasks completed	Decisions made/outcomes achieved
1	● 7 panel members ● 2 cofacilitators ● 1 breakout room support	● Meet the panel members. ● Understand the project and what the panel is for. ● Understand the codesign process. ● Make decisions on the structure of the program and start gathering ideas for the first session of the program.	● Introductions and ice-breaker question. ● Summary of rules of engagement and how to access support. ● PowerPoint providing an overview of the project. ● Jamboard to decide a framework for the codesign of the program. ● Jamboard avatar exercise. ● Jamboard to propose topics the program should cover. ● Mentimeter choosing which topic to codesign first. ● Breakout groups to discuss the chosen topic.	● Agreed on some of the topics the program should cover. ● Chose which topic to codesign first.
2	● 6 panel members ● 2 cofacilitators ● 1 breakout room support	● Recap the decisions made in the previous meeting. ● Explore more topics for the program. ● Create a plan for two program sessions. ● Choose a name for the program.	● Introductions and ice-breaker question. ● Reminder of rules of engagement and how to access support. ● Recap of the codesign framework created in session 1. ● Recap of the program topics identified in session 1. ● Choose a topic via group vote within the Zoom chat. ● Jamboard to brainstorm ideas for a program session based on the chosen topic. ● Mentimeter to select program name. ● Google Doc demonstration of a session plan. ● Breakout groups to create a session plan for two topics. ● Group discussion and feedback on the session plans.	● Agreed the program name. ● Confirmed a framework for codesign. ● Began developing a plan for the format and structure of the program sessions.
3	● 8 panel members ● 1 facilitator ● 1 session support ● 1 breakout room support	● Identify the top 5 key topics that the program should cover. ● Create a draft outline of the program. ● Share feedback about the youth panel sessions.	● Introductions and ice-breaker question. ● Reminder of rules of engagement and how to access support. ● Recap of session 2, via PowerPoint. ● Review of the topics identified in session 1. ● Group discussion to choose the topics to be covered throughout the program. ● Jamboard to develop a draft outline for the program.	● Agreed on the top 5 topics the program should cover. ● Decided on the structure of the program and developed a draft program outline.
4	● 8 panel members ● 1 facilitator ● 1 session support ● 2 clinician researchers	● Discuss feedback of the program outline from the researchers. ● Finalize the program outline following feedback from the researchers.	● Introductions and ice-breaker question. ● Reminder of rules of engagement and how to access support. ● Researcher feedback on the program, via PowerPoint. ● Amendments to the course outline via group discussion.	● Finalization of the program outline.

Following the codesign and feedback sessions, BR created a draft course manual. The development of the course manual involved gathering existing training materials from Ambitious about Autism, researching specific topics (e.g., about setting goals) and working with KC and WM to generate bespoke content (e.g., about identifying social needs). BR, KC, and WM worked together to edit and refine the course manual. When the course manual was agreed upon, BR created all the relevant material (e.g., PowerPoint slides, agendas, interactive activities). This material formed a “beta” version of the program, which was attended by nine autistic young adults (two of whom were part of the codesign panel). Using informal feedback from the attendees of the beta program, additional changes to the course structure and content were made before the public pilot program commenced. Specifically, (1) the session on problem-solving and goal setting was scheduled earlier in the program; (2) some session titles were adjusted to reflect their content more accurately (e.g., “understanding autism part 2” was changed to “experiences of autism and strengths”), and (3) some minor changes to the content were made (e.g., group discussion about what to do if you are not given the support you need in session 5 was replaced with group discussion about how to ask for support and reasonable adjustments). Table 2 provides an outline of the beta program and a summary of the changes made following beta testing.

Table 2.

Beta Program Outline and Changes Made Following the Beta Testing

Session	Beta program outline	Program outline following beta testing
1	Welcome to the course and understanding autism part 1	Understanding autism
	● Introduction to the online course, rules of engagement, signposting to support and meeting each other. ● Group discussion of existing knowledge of autism. ● What is autism? ● Key terms and language.	● Introduction to the online course, rules of engagement, signposting to support and meeting each other. ● Group discussion of existing knowledge of autism. ● What is autism? ● Key terms and language.
2	Understanding autism part 2	Experiences of autism and strengths
	● Autistic features. ● Autism and strengths. ● Group discussion and views on being autistic.	● Autistic features. ● Autism and strengths. ● Group discussion and views on being autistic.
3	Autistic identity	Problem-solving and goal setting
	● How to explain autism to other people. ● When to disclose to others. ● Group discussion about how other people respond to autistic identity and how to learn from these conversations.	● Benefits of problem-solving and goal setting. ● Tools to problem-solve and set goals. ● Peer-supported problem-solving and goal setting.
4	Problem-solving and goal setting	How to explain autism to other people
	● Benefits of problem-solving and goal setting. ● Tools to problem-solve and set goals. ● Peer-supported problem-solving and goal setting.	● How to explain autism to other people. ● When to disclose to others. ● Group discussion about the autistic community and autistic identity.
5	What support is on offer and where to find it	What support is on offer and where to find it
	● What services are available and where to access them. ● What are you legally entitled to in school/college/the workplace? ● What to do if you are not given the support you need.	● What services are available and where to access them. ● What are you legally entitled to in school/college/the workplace? ● Group discussion about how to ask for support and reasonable adjustments.
6	Identifying your social needs	Identifying your social needs
	● Approaches and tools to identify your social needs. ● Group discussion about social groups and friendship and how to advocate for your social needs. ● Tips and ways to find new social groups.	● Approaches and tools to identify your social needs. ● Group discussion about social groups and friendship and how to advocate for your social needs. ● Tips to find new social groups. ● Conclusion of course, review of outcomes, and what next.

All groups were delivered by two facilitators. Some of the groups (4 of 7, 57%) were cofacilitated with an autistic facilitator, although the facilitator’s neurology was not explicitly stated to attendees.

Evaluation Methods

Team reflections on the codesign process

We collected team reflections on the codesign process from the codesign leader (BR) as well as two codesign panel members (LA and LP) in two ways. First, BR provided written reflections after each codesign session, guided by 18 predetermined questions (see Supplementary Materials C). Second, LC led an online discussion between LA, LP, and BR, where they provided verbal reflections about what went well with the codesign process, and what could be improved. JD noted and summarized these reflections, which LA, LP, and BR reviewed and agreed upon. All authors agreed upon the final reflections, which are presented in key thematic areas.

Feedback on the Understanding You, Discovering You program

We gathered feedback from seven groups (including the beta group) who took part in the Understanding You, Discovering You program between February 2023 and August 2023. Participants completed one optional questionnaire before attending the program and another optional questionnaire after taking part.

Participants

Advertisements for Understanding You, Discovering You were circulated via Ambitious about Autism’s social media platforms, newsletters, and Youth Network, as well as at events and through the charity’s individual contacts. In total, 60 autistic young adults took part in seven iterations of the program between February and August 2023 (average group size = 9, range = 5–13, SD = 2.54). Of those, 39 (65%) completed a preprogram questionnaire and, of those, 16 (of 39, 41%) completed a postprogram questionnaire. Independent t-tests and chi-square tests of independence (or Fisher’s exact tests, where necessary) indicated that there were no significant demographic differences between attendees who chose to complete both the pre- and postprogram questionnaire (n = 16) and those who only completed the preprogram questionnaire (n = 23). Table 3 presents characteristics of attendees who completed each questionnaire. Overall, attendees tended to be aged around 20 years, identify as female, and be of a White ethnicity. Most attendees had a formal autism diagnosis, which was received between 3 and 24 years of age.

Table 3.

Characteristics of Understanding You, Discovering You Attendees

	Completed preprogram questionnaire (n = 39)	Completed postprogram questionnaire (n = 16)	P ^a
Age M (SD)	20.4 (2.48)	20.6 (2.36)	0.66^b
Gender			0.41^c
Female	22 (56.4%)	7 (43.8%)
Male	11 (28.2%)	6 (37.5%)
Other	6 (15.4%)	3 (18.8%)
Ethnicity			0.74^c
White	33 (84.6%)	13 (81.3%)
Asian	3 (7.7%)	1 (6.3%)
Chinese	1 (2.6%)	1 (6.3%)
Black	1 (2.6%)	1 (6.3%)
Prefer not to say	1 (2.6%)	0 (0.0%)
Autism diagnosis			0.71^c
Have a formal autism diagnosis	36 (92.3%)	14 (87.5%)
Awaiting a formal autism diagnosis	2 (5.1%)	1 (6.3%)
Self-identify as autistic	1 (2.6%)	1 (6.3%)
Age at autism diagnosis M (SD)	14.1 (6.22)	12.3 (5.56)	0.16^b
Attended previous support group			0.18^d
Yes	14 (35.9%)	8 (50.0%)
No	25 (64.1%)	8 (50.0%)

Tests examining differences between attendees who chose to complete both the pre- and postprogram questionnaire (n = 16) and those who only completed the preprogram questionnaire (n = 23).

Independent t-test.

Fisher’s exact test.

Chi-square test.

Materials

Preprogram questionnaire

We designed a preprogram questionnaire based on a questionnaire previously used to evaluate a postdiagnostic support program for autistic adults.^33,34 The questionnaire was hosted online using Qualtrics software.⁵¹ Participants were offered a paper version of the questionnaire, if they preferred, although no participants requested this option. A link to the questionnaire was sent to attendees via email, one-week before attending the first session, and a link to the survey was presented in the chat at the end of the first session of the Understanding You, Discovering You program. In the preprogram questionnaire, we gathered demographic information about the participants, including their age, gender identity, ethnicity, and information about whether they had an autism diagnosis. We also asked participants about their experience of other support groups, including how useful they had been, and the things that had been particularly good or not so good about them. Next, we asked who recommended the program to them and about their motivations for attending. We also asked about the things they were most or least looking forward to about the program. Finally, we asked whether participants had received enough information before starting the program and, if not, what information they would have liked.

Postprogram questionnaire

A bespoke postprogram questionnaire was developed and hosted online using Qualtrics software.⁵¹ A link to the postprogram questionnaire was presented in the chat at the end of the final session of the Understanding You, Discovering You program, and again via email immediately afterward. In the postprogram questionnaire, we gathered information about how many sessions each attendee had attended, and which sessions, if any, were the most and least helpful. We collected an overall rating for the program between 1 and 10, where 10 was the highest score, and we also asked closed questions about whether they would recommend the program to other autistic people, and whether the program should continue to be offered. Participants could explain their answers to the closed questions using open-ended text boxes. Finally, we asked additional open-ended questions about the most and least beneficial aspects of the program, as well as what changes, if any, could be made to improve the program.

Note: the pre- and postprogram questionnaires also contained quantitative measures on quality of life, well-being, autistic identity, social support, and loneliness. The findings from these measures are not reported here as they were included to inform preparation for a subsequent feasibility trial of the program.

Procedure

We received ethical approval from the Research Ethics Committee at University College London’s Faculty of Education and Society (REC1737). Participants provided informed consent to take part. Preprogram and postprogram questionnaires took approximately 20 minutes each to complete.

Data analysis

We analyzed quantitative questionnaire data descriptively (n, %). To assess whether there were any demographic differences between the participants who chose to complete the postprogram questionnaire and those who did not, we conducted independent t-tests and chi-square or Fisher’s exact tests, using IBM SPSS Statistics (Version 29).⁵²

We analyzed qualitative questionnaire data using reflexive thematic analysis, within a critical realist framework.^53–55 The first author (JD) led the analyses, with support from the other authors. The process involved JD independently familiarizing herself with the data by reading and rereading responses. Next, she reviewed the semantic content (i.e., the explicit or surface meanings) of the responses and generated summary “codes” to aspects she perceived as salient to the evaluation of the Understanding You, Discovering You program. JD then grouped together codes that she viewed as similar and/or related to one another, to generate summary themes. For example, the codes desire to connect with others and a need to feel understood by others were perceived as being closely related and were therefore grouped together under the theme of “social connection.” When all themes had been generated, JD wrote a draft of the findings, which was reviewed by all members of the team to ensure there were meaningful links and relationships between themes, and also clear and identifiable distinctions. No changes to the themes were suggested at this stage.

Results and Lessons Learned

Team reflections on the codesign process

We organized our reflections on the codesign of the Understanding You, Discovering You program in three areas: (1) maximizing success through preparation; (2) facilitating effective, respectful communication; and (3) empowering meaningful collaboration.

Reflection one: maximizing success through preparation

Adequate preparation was perceived as a critical factor in optimizing the codesign process. Panel members particularly appreciated receiving the one-page profiles and meeting agendas (featuring photographs/pictures) in advance of each session, as it removed uncertainties around the sessions and allowed them to thoughtfully engage. However, panel members also highlighted several areas in which further preparation could have improved experiences. First, they stressed the importance of facilitators being well-versed in the rules for engagement and consistently upholding them. Based on this feedback, group agreements should be coproduced as part of the first session of the program to give collective responsibility. Second, maintaining the same facilitators for each session was felt to be important to create a more cohesive and organized process. Where this was not possible, having facilitators review notes from previous sessions was important to ensure continuity and seamless transitions between discussions. Finally, the codesign panel requested more regular updates on the program’s progress and any subsequent changes made. Indeed, the codesign facilitator shared regrets about not having time to send regular updates to the panel. To ensure success in future initiatives, proactive planning should include sending timely updates and facilitating informed discussions. Providing a formal recognition of contribution (e.g., a certificate) was also felt to help boost morale while acknowledging individual and collective efforts.

Reflection two: facilitating effective, respectful communication

Effective communication played a pivotal role in the perceived success of the codesign process. Panel members appreciated a diversity of communication modes, which accommodated different communication styles and preferences. The “hand-raising” function within Zoom, in particular, made them feel respected and listened to, as it allowed them to speak uninterrupted. In addition, establishing clear rules of engagement, especially the rule encouraging respect for diverse opinions, fostered an environment conducive to open and constructive dialogue. Predetermining these rules facilitated respectful and fair decision-making (i.e., majority vote).

Breakout rooms were well-received, providing opportunities for in-depth discussions where panel members felt comfortable sharing personal experiences if they wished to do so. This supportive setting contributed to the development of meaningful long-term relationships within the team. Specified routes for communication outside of sessions allowed panel members to connect and exchange ideas beyond scheduled meetings.

Overall, the panel’s passion for the project contributed to a positive and collaborative atmosphere. Shared lived experiences played a crucial role in facilitating discussions and promoting an understanding of alternative viewpoints, especially when disagreements arose. Some codesign panel members already knew each other (e.g., via other initiatives within the charity), which made it easier for them to be open and honest, thus fostering a comfortable environment where personal experiences were readily shared. Similarly, the development of strong relationships between facilitators and codesign panel members promoted open communication and created a supportive group dynamic.

Reflection three: empowering meaningful collaboration

The panel appreciated being actively involved in determining the topics to be covered in the program, the order in which they should be addressed, and the inclusion of various elements in each session. They also valued the structured and facilitated nature of the sessions, provided by the team at Ambitious about Autism, as this support ensured tasks were completed in the allotted time frame. Indeed, knowing there was a professional purpose for the sessions helped keep the discussions on track. One of the panel members (LA) described the collaboration using a building analogy: while members of staff at Ambitious about Autism built and established the core foundations (i.e., structuring and organizing the codesign sessions), most of the actual building work (i.e., creatively designing the program) was undertaken by the codesign panel.

Table 4 contains a list of specific recommendations, within these three areas, for future online codesign processes.

Table 4.

Recommendations for Future Online Codesign Processes

Recommendation	Description
1. Ensure adequate preparation	a. Codesign facilitators should send one-page profiles about themselves in advance of the first meeting. The profile should contain a photograph of themselves and information about them and their role. Panel members may also create one-page profiles about themselves. b. Codesign facilitators should send meeting agendas before each meeting, with expected content, activities, and timings. c. Codesign facilitators should be aware of the agreed rules for appropriate engagement. These rules should be explicitly communicated to panel members, and consistently upheld. d. Where possible, codesign facilitators should remain consistent over time. Where this is not possible, clear notes should be given to new facilitators, so they are aware of previous developments. e. Panel members should be regularly updated with progress and future developments, even if the formal codesign process has ended.
2. Facilitate effective, respectful communication	a. Offer multiple methods for participation/engagement (e.g., text-based, verbal, anonymous contributions/voting) b. Provide clear expectations for respectful communication (e.g., using hand-raising function to indicate attendee has something to contribute without interrupting others) c. Provide clear rules for respectful and fair engagement (e.g., acknowledging, and respecting, diversity in views while making fair decisions by choosing majority votes) d. Provide opportunities for in-depth discussions between panel members (e.g., via breakout rooms) e. Offer routes of communication outside of codesign sessions so panel members can connect and exchange ideas beyond scheduled meetings. f. Consider group dynamics when assembling the codesign panel. Having shared lived experiences plays a crucial role in promoting understanding and respect. Similarly, existing relationships between panel members may impact the success of their working relationships. g. Codesign facilitators should begin developing positive relationships with panel members before meeting as a group.
3. Create processes for meaningful collaboration	a. Panel members should be actively involved in all aspects of decision-making. b. Codesign sessions should be structured, but flexible.

Feedback from the Understanding You, Discovering You program

Following our reflections on the coproduction of Understanding You, Discovering You, we present initial feedback regarding the program, comprising attendees’ motivations for attending the program, as well as a qualitative analysis of attendees’ experiences. Participant quotes are presented verbatim, including any spelling/grammatical errors, and are accompanied by a participant ID so that quotes from the same participant can be identified.

Motivations for attending the program

Most attendees had heard about the program and signed up to take part themselves (n = 18, 46.2%) or had the program recommended to them by a parent/carer (n = 16, 41.0%). The remaining participants had the program recommended to them by a medical professional (n = 3, 7.7%), or by another professional, such as a teacher (n = 2, 5.1%). We organized qualitative responses to the preprogram questionnaire into three key areas as follows: (1) self-discovery and understanding autism; (2) social connection, and (3) giving and receiving practical support.

Motivation 1: self-discovery and understanding autism

With many participants recently receiving their autism diagnosis, they were attending the program to learn about my autism better (Participant 28; henceforth, P28) and enhance my understanding of how autism relates to me (P34). In the absence of support immediately following their diagnosis, they valued the opportunity for support provided as part of the program: Being diagnosed as an adult, there is not really much support or resources available after a diagnosis to help understand what this actually means (P16). As such, participants felt the program offered a unique opportunity to learn more about themselves, and develop my identity postdiagnosis (P07).

Motivation 2: social connection

Participants appreciated the opportunity to speak with more people about autism (P33) and form more connections (P01). Participants particularly looked forward to meet[ing] other people my age with autism (P10) as well as people who understand what I’m going through (P09). By connecting with similar others, participants hoped they may feel less alone (P12), gain new friends (P20), and find some kind of community (P29). Nonetheless, participants also shared anxiety around the social aspects of the program: [I am least looking forward to] meeting new people as I find that a bit stressful (P18).

Motivation 3: giving and receiving practical support

Participants wanted to learn about the support they could receive, and learn practical skills, such as how I can advocate for myself (P34), how to function (P35), and to learn how to teach others how best to help me (P28). Some participants also felt they could support other attendees: I want to help other young people to understand themselves (P03).

In the preprogram questionnaire, we also asked participants if they received sufficient information before attending the program. Most participants (n = 35 out of 38¹, 92.1%) indicated that they did. A minority (n = 3 out of 38, 7.9%) expressed a desire for more detailed information about each session before starting, rather than just information about the first session.

Initial feedback on the Understanding You, Discovering You program

On average, the 16 participants who completed the postprogram questionnaire attended 5 of the possible 6 (83.3%) Understanding You, Discovering You sessions (range = 4–6 sessions, SD = 0.63). Providing an overall rating of the program from 1 (lowest possible rating) to 10 (highest possible rating), participants, on average, rated the program 8 (SD = 1.83), suggesting high regard for the program. No participants said they would not recommend the program to other people: 13 (81.3%) said they would recommend the program to others, and 3 (18.8%) said they were unsure. The sentiment among those who were unsure was that it depends on the person (P11). Promisingly, all participants said the program should continue to be offered.

Qualitative responses to the postprogram questionnaire largely mapped onto the motivations for attending the program. First, participants appreciated the opportunity for self-discovery and understanding autism. Since attending the program, participants suggested that their understanding of autism and its relation to their lives had improved: [I have enjoyed] understanding what autism is all about (P22). One participant reported the course made them more confident in [their] diagnosis (P01). Second, participants appreciated the social connection the program afforded. Participants said they enjoyed meeting like-minded people (P14) and [having] a space for us all, [which] seldom exists [elsewhere] (P21). Yet, many wanted more opportunities for social connection, with one participant noting: more social interaction [would be appreciated] as I feel I didn’t really get to know the other people very well (P15). The diversity of the group was felt to affect connections: although everyone on my particular session would be considered high-functioning, we were all of completely different abilities, meaning that there wasn’t really that peer group that we each had hoped for (P13). Similarly, some felt in-person sessions would have improved connection within the group: [because] the sessions were over Zoom, nobody got a chance to get to know each other … this meant that none of us found the peer group we were seeking…it would be [better] in person (P23). Nonetheless, participants felt solidarity with people attending (P26) and added that it was nice to meet people who understood me (P25). Finally, participants appreciated receiving practical support: the most beneficial [sessions] were the parts that can be used everyday (P06). Examples of beneficial content included how to put some of my issues into words (P27), learning about rights, reasonable adjustments, and the social aspect of being able to make friends (P06), and where best to receive support and what help is needed (P22). Relatedly, participants felt the program was practical and inspiring (P21) with attendees [coming] away feeling more supported (P01).

Participants also reflected on practical aspects of the program. Overall, feedback regarding the course facilitators and the overall culture within the program was positive: [the program] had a very open and welcoming atmosphere and the staff were very friendly (P11). Similarly, participants were positive about the session structure (small groups so all questions can be answered, jamboards were easy to use [and] there was a recap of what we looked at last week so we could remember and reflect; P11) and content: the slides were clear and it was entertaining (P01). Nonetheless, one participant reflected that the resources were more aimed towards a younger audience, or toward Autistic individuals with higher support needs (P13) and suggested having more tailored groups. Similarly, for some attendees, the presence of nonautistic facilitators hindered their ability to express their most authentic selves: I didn’t feel comfortable enough to stop masking as the people/person I was talking to the most were the predominantly neurotypical [Ambitious about Autism] team (P11).

Discussion

In this article, we presented the codesign of a peer support program for autistic young adults, alongside the initial feedback from program attendees. Reflections on the codesign process include the importance of empowering meaningful collaboration, facilitating effective, respectful communication, and maximizing success through preparation. These reflections complement existing principles for participatory work^43,44 and extend existing knowledge to demonstrate how principles of good participatory practice can be embedded within codesign processes to contribute to their success. Initial feedback from attendees of the codesigned peer support program indicated that they found the program acceptable and useful. Through attending the program, attendees hoped to understand more about autism and how it related to their own experiences, connect with similar others, and gain and receive practical support. Preliminary feedback on the program mapped onto attendees’ motivations for attending. Attendees said they appreciated the opportunity for self-discovery and understanding of autism, which was especially valuable for those who had recently received their autism diagnosis and lacked immediate support. In addition, participants valued the social connections formed during the program, as it allowed them to meet like-minded peers; although some expressed a desire for more extensive opportunities for social interaction. Practical aspects of the program, such as developing key skills and coping mechanisms, were perceived as particularly beneficial. However, some participants reported feeling unable to be their authentic selves when they believed sessions were led by nonautistic facilitators. It should be reiterated that some of the Understanding You, Discovering You groups (4 of 7, 57%) were cofacilitated with an autistic facilitator, but the facilitator’s neurology was not explicitly stated.

Our findings closely map onto existing evaluations of peer support programs. For example, Crane and colleagues^33,34 evaluated motivations for, and experiences of, attending an autistic-led peer support program. They found that autistic adults attended the program to learn more about autism, feel empowered about their identity through meeting similar others, and develop practical strategies and coping mechanisms. Similarly, the authors reported that attendees benefited from the autistic-led nature of the program and appreciated the opportunity to meet like-minded others and develop a positive and practical outlook on autism. These findings highlight the benefit of working with autistic people to develop programs of support, to ensure they are relevant and effective for the people they seek to benefit. Being explicit about the facilitator’s neurology (as in the program evaluated by Crane et al.^33,34) may be beneficial in future programs to ensure attendees feel comfortable in discussing their experiences.

The codesign of the Understanding You, Discovering You program highlights the potential value of meaningful collaboration in developing peer support for autistic young adults that addresses their needs for self-discovery, social connection, and practical support. By working directly with autistic young adults, we were able to design a program that was perceived, by attendees, as beneficial and something they would recommend to others. Our findings underscore the power of such collaborative efforts and highlight the feasibility of working with autistic young adults, a group who are not always listened to, and for whom parental voices may often take precedence (see Bertilsdotter Rosqvist et al.⁵⁶ for a review). We hope that by transparently documenting our process, we can encourage other researchers and practitioners to engage in meaningful codesign to ensure that support programs truly meet the needs of autistic people.

Limitations

While this study offers valuable insights, it is not without limitations. First, while autistic young adults played an integral role in codesigning the program, there was no direct involvement of autistic people in interpreting the feedback on the program. Second, there was a notable lack of diversity in the participants who took part in the pre- and postprogram questionnaires. It is unclear whether this discrepancy is indicative of a broader issue of underrepresentation within the program’s attendee demographic, or whether this reflects a specific subgroup’s choice to (not) participate in the research. The former would suggest that the program may not have effectively reached or engaged with a diverse population of autistic young adults, which could have implications for the program’s ability to address the varied needs of the broader autistic community. This finding is in line with existing research, which highlights broad inequalities in access to support and services.⁵⁷ It should be emphasized that we did not explicitly consider the recruitment of participants from diverse communities, which may have limited our sample. Future research may seek to understand the mechanisms underpinning these inequalities, alongside exploring strategies to ensure that programs are accessible to a diverse range of autistic people.⁵⁸ Researchers should also commit to improving diversity within their samples by making explicit considerations about how they will recruit diverse samples during the planning stages of their research to ensure that their findings are representative and applicable to the broader autistic community. Addressing underrepresentation is not only an ethical imperative but also essential for developing effective and inclusive support programs. Finally, the attrition rate for the completion of the postprogram questionnaire was high (59%), meaning that important insights from a substantial portion of participants were not captured. While the exact reasons behind the high attrition rate remain unclear, factors such as survey fatigue, unclear instructions regarding how to complete the questionnaire, recruiting young people in a stage of transition who may not have time, or an insufficient number of follow-ups and reminders may have contributed. To more rigorously evaluate the Understanding You, Discovering You program, a robust trial is needed. Such an evaluation should explore strategies to improve participant retention rates, to enhance the overall robustness of findings.

Footnotes

Acknowledgments

The authors would like to thank the participants who generously took the time to speak with their team, as well as Alison Worsley and the Ambitious Youth Network for their crucial contributions in setting up the Understanding You, Discovering You program. Research at the Centre for Research in Autism and Education (CRAE) is generously supported by Pears Foundation.

Authorship Confirmation Statement

J.D.: Formal investigation, formal analysis, writing—original draft, and writing—review and editing. B.R.: Conceptualization, methodology, and writing—review and editing. L.A.: Conceptualization and writing—review and editing. L.P.: Conceptualization and writing—review and editing. W.M.: Conceptualization and writing—review and editing. K.C.: Conceptualization, writing—review and editing, and supervision. L.C.: Conceptualization, methodology, writing—review and editing, supervision, and funding acquisition. The article has been submitted solely to this journal and is not published.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Ambitious about Autism received philanthropic funding from The Bally’s Foundation to codesign the Understanding You, Discovering You program. Part of the funding from The Bally’s Foundation was awarded to LC, to undertake the work presented in this article.

Supplementary Material

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