Contents
- Introduction
- An Example of a Student Organization
- Why are Student Groups Necessary and Important?
- Starting a New University Student Organization
- How to Make the Most of a Student Organization
- Conclusion
- Additional Resources
- References
Introduction
Attending college or university can be a particularly difficult transitional stage for neurodivergent young adults, especially for those who suddenly lose the support systems and accessibility structures upon which they relied up to this point. A new place, new routines, new social rules, and a sudden increase in independent demands can easily become overwhelming. Unfortunately, this new challenge is often also accompanied by the ableist expectation that neurodivergent young adults should no longer “need” certain supports if they have made it this far – especially for those who have not needed, or had access to, explicit accessibility aids previously.
This disconnect can be really jarring and often isolating, especially when there are barriers to accessing support itself. Neurodiversity-centered student organizations are uniquely equipped to reach neurodivergent students who otherwise may be at risk of ‘falling through the cracks’ of complex and often confusing university/college processes and practices. These organizations or groups can comprise a community ready to ‘catch them in the freefall’, offering peer social support, resource knowledge and self-advocacy skill-sharing.
A growing number of studies have examined peer support and mentorship in neurodivergence, generally with a focus on formal university/college-organized programs. Reviews of peer mentoring programs for Autistic postsecondary students—ranging from individual and group gatherings—were conducted by several research groups; for instance, Duerksen and colleagues in 20211, Morris and colleagues in 20222 and Nachman and colleagues in 20223.The format of peer support ranges in terms of individual or group gatherings1,2.
These reviewers generally identify that peer mentorship to Autistic students can be helpful as they navigate campus life, including social support and integration, academics, physical and mental health, and moving forward toward their selected career path. However, most reviewed programs comprised non-Autistic mentors, with the exception of programs such as Building Bridges and Project Reach1. But to truly serve this marginalized community, it is critical to ensure that the perspectives and priorities of neurodivergent students are not only being considered, but are actively directing the design and leadership of support programs. Recent initiatives are increasingly prioritizing this inclusion.
One way to do this is through student-led groups. A notable example is the Aggie Neurodiversity Community (ANC) at UC Davis in California (USA). Below is a first-hand account of this program and its development from one of the leaders of the organization, Nathalie (Nyx) Moriarty.
We have also included reflections from Jacob de Wijze, a leader who engaged in another student organization at the University of Victoria (Canada), after being part of the UC Davis ANC.
An Example of a Student Organization: The Aggie Neurodiversity Community at UC Davis
The University of California, Davis is home to the Aggie Neurodiversity Community (ANC), a campus registered student organization of over two hundred neurodivergent adults. Primarily undergraduate and graduate students, the members of the ANC foster a vibrant and diverse community of neurodivergence in the spirit of peer support, self-empowerment, self-advocacy skills, and neurodiversity culture. Founded by Autistic autism scholar, Patrick Dwyer, Ph.D., during his graduate program, the ANC has blossomed as a home for neurodivergent social support and fellowship since 2019.
In addition to a thriving social club, the ANC hosts a team of advocates who are a true force of disability advocacy and education on campus and in local communities. Representing the broader student community, these self-advocates have been successful in leading dozens of workshops and trainings regarding neurodiversity. Each presentation is tailored to the specific needs of the audience via consultation with organizers, so as to conclude with actionable steps for improving accessibility. These diverse audiences span multiple departments and administrative groups at UC Davis and beyond. Nearly 3,000 UC Davis administrators, faculty, teaching assistants (TAs), students, and staff have attended trainings. Further, trainings have been presented at multiple university and college campuses, research institutes, K-12 schools, and even at the US Army Corps of Engineers Sacramento Office.
Additionally, student leaders have leveraged their voices to advocate for diverse objectives across campus domains, including better academic accommodations, increased access to diagnosis and assessment, and better neurodivergent disability protections for student employees. ANC leaders were invited to draft the UC Senate policy on neurodiversity, and a paper was published that elaborates on those UC Senate recommendations. This group also has presented at an autism conference, on the importance of creating neurodiversity support groups by and for neurodivergent students.
Over three terms as President of the ANC, Nathalie (Nyx) Moriarty has represented the neurodivergent student population in consulting on community advisory boards at the UC Davis MIND Institute researching developmental disabilities. Nathalie is a proud member of the Center for Excellence in Developmental Disabilities (CEDD) – Community Advisory Committee and the CEDD’s Project ECHO mentoring series Hub Team. On the UC Davis main campus, Nathalie has consulted and supported the new Autistic Peer Mentoring program through the Student Disability Center, consulted on the creation of the Student Health and Wellness Center Neurodiversity support group, co-founded and hosted the annual Disability Davis Commencement Ceremony, and launched a resource fair and network for graduate and professional students. Together, the ANC is an essential central hub for neurodivergent university students – a home for neurodivergent consciousness, identity, culture, solidarity, community, advocacy, education, and resources.
Why are Student Groups Necessary and Important?
“Social support and connection across our shared identity is the original, primary purpose of the ANC. Disabled and neurodivergent students, by nature of our conditions and the ableist system in which we live, have few opportunities or safe places to socialize. As such we have fewer successful social interactions and consequently, fewer close friendships, relationships, and professional networking connections. So our response was to create our own safe social space that is accessible, welcoming and accepting of our differences, and designed with understanding our shared identity and experiences in mind.” – Nathalie (Nyx) Moriarty
“It was stressful and difficult not knowing how to navigate things at University. I felt lonely, having to navigate the majority of how to interact with faculty and my peers without knowing the expected social niceties such as when it is acceptable to ask questions after class. It also is difficult to try to navigate these things whilst being in a new environment and knowing very few people. I took a reduced course load, at the suggestion of a mentor, based on their own experience and research of Autistic post-secondary student success…. Although I had decided prior to registering that I would take a reduced course load, no one from the University explained why it might be advantageous to begin slowly.
It is [in offering] this kind of insight that a mentor program could help incoming students: making information available so that people can make informed decisions and set themselves up for a successful experience…. All the generic advice provided to new students about study habits and problem solving did not address the additional questions that I, and presumably many of my peers, had. For example: Is there a limit to how often one should attend office hours? When is it appropriate to reach out to a professor if you are interested in their research?” – Jacob de Wijze
Starting a New University Student Organization: Reflections and Recommendations
If such a group does not yet exist in your college or university, it can be initiated. Based on the experiences of student organization developers, we list below some considerations and tips in getting started.
Jacob de Wijze offers the following reflection: “I had been active in the ANC group [during] my gap year and experienced first-hand the benefits of having a supportive community that existed outside of official events and meetings. This really made me motivated to try to set up a peer mentorship program for incoming Autistic students to try to help ease the transition into university, especially since [my university] had nothing of the kind.”
Consult the Office of Student Organizations or Student Union at your Post-secondary Educational Institution:
An early step is to consult with the Student Organization Office or Student Union on your campus. In one case, a club was registered with the student union and the university recognized that and allowed the leaders to book rooms in which to meet. Various universities will have specific rules, guidelines, and a registration process that may be a little difficult to navigate, but there will likely be consultants who can help you along the way. Generally though, you will primarily need a basic constitution with bylaws, a mission statement, and beginning officers and members.
Describing the process at his university, Jacob de Wijze states, “The Society for Students with Disability (SSD) is an established student group on campus that exists to support students with disabilities and to help with advocacy for students in terms of creating more accessible spaces on campus. Since this was the primary disabled student community with a large variation of identities and support needs, it was essential to collaborate with them and to get input about what they would want and what they thought would be needed. Working together would help establish their support in the future work that would be required to get a mentor program started.”
Constitution and Bylaws:
Your organization will most likely need a constitution and bylaws, however, the institution will likely have guidelines or even full templates with the specific language required. Many institutions have staff consultants for additional support. Broadly, this documentation can be viewed as a set of living documents that are intended to be amended along the way – they can grow with your organization to meet the group’s evolving needs. The constitution and bylaws focus on the basic details of what the group is for and how it is governed. Note though that it can be counterproductive to get overly specific, as this could diminish the group’s flexibility and make it less responsive to members’ needs.
Generally, the constitution will include: definitions and interpretations; the group’s name, purpose, and values; leadership positions and duties; membership criteria and types; general meeting expectations; limitations; and the amendment process. Although similar, the bylaws will more specifically detail operations: rights and duties of members; roles and responsibilities of officers; terms of office and elections; vacancy, addition or removal of officers; protocols of general and executive meetings; committees and working groups; expenditures; and other areas of policy.
Jacob de Wijze comments on the process of arriving at their purpose and priorities: “In order to do this and start the project, we had to create a survey to determine what people would want from a peer mentorship program. We explored topics such as: how often people would want to meet a mentor, whether people would want individual only or also group activities, and whether activities with faculty to facilitate building relationships were desirable.”
Mission Statement:
A mission statement is a summary of the aims and values of an organization and typically encompasses three key parts: purpose, objectives or goals, and intended impact. Mission statements are unique to an individual organization and its representatives, but generally they should provide unifying direction, magnitude or scope, and momentum with clarity and precision. They can be as short as a single, catchy sentence, or a couple more-detailed paragraphs.
Example:
The Aggie Neurodiversity Community (ANC) is a social community of undergraduate and graduate students, as well as general community members, who identify as neurodivergent. Neurodiversity is broadly and inclusively defined, no diagnoses necessary, so as to create as welcoming and diverse a space as we can. We work side-by-side with the Disabled Student Union, another UC Davis club, to create a space for disability cultures while supporting and empowering our communities.
The purposes of our club are:
- to act as an on-campus community and safe space for neurodivergent students;
- to encourage each other and offer peer support;
- to empower neurodivergent students, offering them the tools and support to succeed; and
- to foster neurodivergent identity, consciousness, solidarity, and culture.
Officers and Leadership:
A new organization needs an initial leadership team that is prepared to do some ‘heavy lifting’ to get the organization off the ground. Your campus will likely require an executive board of 3-4 positions: a President, a Vice President, a Treasurer, and possibly an Activities or Event Coordinator. These positions will almost certainly have eligibility requirements and responsibilities that are determined by the student organization office or the student union. However, you can also create additional non-executive leadership positions with more flexible qualifications and/or responsibilities. For example, the ANC leadership team also has a Webmaster to manage the Discord server and website, an Off-Campus Ambassador to represent non-UC Davis members, a Social Media Coordinator, and Advocacy Team members that contribute to training materials and presentations.
Membership Criteria:
As a student organization, you will have to define the criteria, rights, and responsibilities of your members, and what kinds of membership are available (if your institution allows). Be sure to carefully abide by your student organization official rules! For example, your institution/student union may not allow membership to be limited to neurodivergent individuals. If so, you might still be able to emphasize that the purpose of the group is to be a community for neurodivergent students while still welcoming neurotypical students to participate respectfully in accordance with the group constitution and bylaws. Your institution/student union may also have rules about non-student members, which could affect how open you can be to alumni, potential students, students at other nearby institutions, or other interested members of the community.
The ANC has two types of members: student members who are currently enrolled as UC Davis undergraduate and graduate students, and associate members comprising individuals who are not a current UC Davis student. According to Registered Student Organization office regulations, student members have far more rights and responsibilities than associate members. Associate members cannot vote in general meetings nor hold an executive office, but they can vote in leadership elections and hold leadership positions that are not executive offices. They also are screened to join the group and are added on an individual basis at the executive officers’ discretion. That said, ANC warmly welcomes all associate members as long as they identify as neurodivergent and agree to abide by the community guidelines.
Maintain Principles of Disability Justice:
Disability is a vast, diverse umbrella, and hosting a social group of neurodivergent young adults can be challenging–especially because experiences, needs, and perspectives may differ, and in some cases, clash. It is important to align your organization with principles of disability justice and maintain a pan-disability approach to your student group. This will help you stay in compliance with campus student organization policies, but also remain consistent with the principles of neurodiversity that unite the neurodivergent community (e.g., disability advocacy). Your organization must prioritize diversity, equity, inclusion, and accessibility to foster a strong sense of belonging and community in your membership.
For example, ANC does not allow “diagnosis gate-keeping”. Its mission statement, constitution, bylaws, and community guidelines emphasize that all forms of neurodivergent identity, at all levels of ability and impact, are valid and welcomed under the neurodiversity umbrella. “No diagnosis necessary” means that those who are considered “late diagnosed”, “under-diagnosed”, or self-identified (sometimes referred to as “self-diagnosed”) are all appropriate and valid identities or statuses of neurodivergent disability.
Within your spaces, you should also keep in mind various access needs, anticipate them, and have accommodations in place even before they are explicitly necessary. This includes physical disabilities, as many neurodivergent folks have multiple disabilities. Keep in mind that our community is incredibly diverse in social support, experiences, access to resources, and styles of disability management. Try to center understanding in communication—it will go a long way to meeting people where they are at and supporting them as they are.
Remember, however, that you are a neurodivergent or disabled student volunteering to help lead a student organization, and as such, you have your own access needs. Indeed, do what you can to make sure the space is inclusive and accessible for all, but don’t expect yourself to perform ‘superhuman’ or unrealistic feats in the process. These communities thrive by collective action and collaborative care for all.
Community guidelines are important. They should be firm but fair, with grace given when possible. Outline the expectations within your spaces; they should be easily accessible and understandable. Ensure that all can and do abide by them. Remember, these principles are in the service of making sure your organization is an equitable, accessible and safe space for neurodivergent students.
It is really important that you state repeatedly and clearly, especially in your mission statement—that your organization is a space by and for neurodivergent people to self-advocate, self-empower, and foster their own identity. You will likely encounter many well-meaning neurotypical people who are interested in clinical work or have a friend or family member who is neurodivergent – who seek to join or collaborate with your organization. They often have the best of intentions – perhaps wanting to “help” members; however, they often lack sufficient understanding of the principles of neurodiversity or social models of disability to be the kind of support that would truly benefit these communities.
Even though they are well-intentioned, they often hold clinical or deficit perspectives of neurodiversity and disability that can be harmful. Unfortunately, some even join because they want to use the student organization as a method of recruiting participants for research studies or clinical practice. It is important to explicitly state that this is not appropriate, and affirm the values and purpose of the group to protect its members.
You can absolutely welcome neurotypical members who genuinely want to learn and support the goals of the group, but be careful. Do not allow them to center themselves, disrupt conversations, or pathologize or infantilize your neurodivergent members, and be on the lookout for any indications that their motives or behaviors may not be in alignment with the group’s values or objectives. Your community guidelines should reflect your organization’s principles and detail terms of engagement to center your neurodivergent members and protect the safety of this vulnerable space.
How to Make the Most of a Student Organization
Below are elements that can enhance the benefit and impact of a Student Organization. Topics briefly described are: student connection, advocacy, hosting resources, campus collaborations and community partnership.
Social Connection
The ANC supports social connection and engagement through multi-modal approaches. First, it uses a Discord server with dozens of different channels, thus offering a highly structured, continuous, 24/7, online platform that takes minimal demand to engage. Additionally, weekly live meetings are held over Zoom. These meetings are optional and less structured, and they minimize demands of engagement. People can attend as they are, can come and go as they please, and participate to the extent to which they wish. Some members only use the chat or never turn on their cameras, and some don’t participate at all and just like to have the group on in the background. Beyond community guidelines, there are no expectations or demands, thus everyone can access the space with autonomy and agency.
The ANC holds at least one in-person event per quarter. These are sensory-friendly and activity-based live spaces to interact in small or large groups with a lot of flexibility to meet everyone’s needs. These vary from mini-golf outings, to potluck picnics, to board game nights, to PowerPoint parties. Outside of these, special events are hosted for various occasions. The biggest event of the year is an Annual Autism Acceptance Month Special Interest PowerPoint party. It boasts catering, fidget toy goodie bags, gifts for presenters, and prizes for the crowd favorite, best-researched, and most niche interest presentations.
The ANC also has partnered with other disability groups on campus to collectively host a Disability Davis Graduation ceremony to honor neurodivergent graduates who do not wish to attend the official university commencement ceremony due to the demands and inaccessibility of the event. Instead, it offers a live-streamed, catered dinner with short speeches from local leaders and disabled heroes. No long walks to the podium either—guests can sit with their loved ones as a slideshow displays each graduate, showing their pictures and accomplishments as their names are called. They enjoy their spaces in their way.
Of course, it will take time for any community to grow, and leaders of a brand-new student organization should be careful not to overstrain themselves and their first few members by trying to do too much at once. A few simple things – like regular meetings and a Discord server – can provide a solid foundation for future growth.
Advocacy
As far as advocacy is concerned, the ANC collects ideas, amplifies voices, and distributes the labor of advocacy to keep momentum for meaningful change. Specifically for student needs, your campus reach ranges from the classroom, to housing and amenities, activities, and so much more. Beyond campus, student groups provide the structural and organizational tools to help build momentum and longevity for larger policy and social activism across and beyond the campus sphere! With a collective in place, you have the foundational support to impact greater changes in your local communities as well.
To the extent that you have opportunity and capacity, you could advocate for student needs in:
- The classroom
- Campus housing and amenities
- Extra-curricular activities
- Event accessibility
- Financial aid
- Campus offices and departments
- Health, wellness, and counseling
- Mentorship, internships, and research
- Campus employment
- Disability pride/celebration
- Other areas of needed change off-campus!
*An important recommendation based on the experience of a student developer: A student developer noted, “Keep your social group and advocacy team separate”. It was noted that they should operate in parallel of course, but most neurodivergent students do not have the time, energy, or skills to fully dedicate themselves to self-advocacy. Pressure to advocate can be overwhelming for those who may be in more vulnerable positions. Most neurodivergent students just want a safe place to socialize with other people just like them and make friends. “Several of us specifically want reprieve from the conversations about our differences or the systemic oppression we face. Sometimes, you just need a place to rest and exist as you are, where you are finally understood, without having to engage with why that is.”
Engaging in advocacy should be an opt-in option rather than a requirement to access and participate in a social space. Beyond that, activism is not sustainable if it is excessively demanding on the members of a marginalized group to constantly engage and push back against their oppression. Having the freedom and agency to manage oneself within the space makes ‘all the difference’ in maintaining the momentum and longevity of your advocacy team.
Hosting Resources
Student groups are a great place to host resources. You can collect, consolidate, and distribute resources that would otherwise require a lot of time, knowledge, and labor to access on their own. This may include links to neurodiversity-affirming healthcare resources and providers, infographics and language guides to educate others on neurodiversity, financial support sources, ‘Know-Your-Rights’ guides, information from workshops, and suggestions for self-advocates and content creators, and so much more.
Campus Collaborations and Community Partnership
One of the most powerful perks of a student organization is easy access to a wealth of resources through the university system. This proximity to other affiliates and collaborators is unique to campus and should be utilized to the fullest extent possible. Student leaders should absolutely build connections with the campus office that handles student disability and accommodations. This will grant you an avenue to advocate on behalf of your members if needed, and there may be opportunities to collaborate on new initiatives or programs to better serve the neurodivergent student community. It may be worth reaching out to other offices and branches of student support or affairs as well: housing and dining; employee disability management services; campus safety and security; student health and counseling services; and so on. There may even be other student organizations that could be powerful allies in advocating for your community or in recruiting members. In the aim of recruiting and finding members, groups could partner with existing organizations on campus that may be able to share information for you (ideally via an email blast, or if not, at least by sharing flyers). You could also talk about the group at club fairs and other events held to reach the student masses, particularly in the beginning of the term (but be warned: these events can be noisy and overwhelming).
If a prospective club leader is unable to find 2-3 other neurodivergent people to be the other officers, there is the possibility of registering the group with placeholder officers, thus creating the platform associated with being a club. This allows for online listing of the group and contact information being shared which in turn could help find more group participants. And of course, things like descriptive websites can be very helpful.
As the group gets started, do not get discouraged if only a few people attend gatherings, or if the second meeting has fewer people than the first. Remember that this beginning can be a foundation for continued growth.
If your campus has a broader (or physical) disabilities group, collaborate with them. If your campus does not have such a group, consider starting one too! You can also reach out to other affinity or identity-based student organizations for an intersectional approach to ensure you reach multiply-marginalized groups that are likely in need of more specific resources. Check if your student government has any committees for disability justice. If so, perhaps they can help with funds or other needed resources. If your campus has a graduate school, you could reach out to the office of Graduate Studies as well. Speaking from personal experience, a toolkit developer noted, “Autistic graduate students are a force to be reckoned with and there are more of us than you think!”.
Beyond campus, your student group should consider partnering with other neurodivergent and disability groups in your local community for mutually beneficial collaborations. Student groups are made up of, and serve, a niche group: primarily young adults with moderate to low support needs who are often late-diagnosed or self-identified. Fewer resources and support systems are available to this cross-section of the disabled community outside of a university campus affiliation, so you can partner with other local communities to advocate for expanded access to necessary services and resources. And student self-advocates can in turn, lend their skills, numbers, and efforts to other organizations to consult on, advocate for, and build momentum on their initiatives. Some potential collaborators include local schools, networks for disabled children, youth and adults, research or community groups, or even non-disability organizations that are not accessible and inclusive, but would like to be.
Conclusion
Ensuring neurodivergent voices and leadership in group development has emerged as a key priority. Student groups offer important benefits of support and mentorship to neurodivergent students, and university/college-level support is important in working toward sustainability.
As described in this toolkit, the establishment of these groups on campus is a crucial resource! If you are interested in creating a student organization for neurodivergent people on your own campus, consider the steps outlined in this toolkit and look to successful examples like the UC Davis ANC and UVic groups, as linked below. We wish you all the best in creating this important resource for your campus community.
- Aggie Neurodiversity Community (ANC) Website
- UVic Society of the Students with the Disability (SDD) Website
- Creating a Peer Mentorship Program for Incoming Autistic Students Conference Poster - by Jacob de Wijze
Additional Resources from AIDE Canada
- Autism Campus Prep
- Autism and Post-Secondary Supports
- Building Understanding, Informing Action: Six Principles for Inclusion
- Peer Networking and Building your Circle of Social Supports in Manitoba
- Developing your Social Circle - For Self Advocates in Alberta
- How to be an Ally to the Autistic Community
- Friendship Collection
- Attitudes Towards the Inclusion of College Students With Intellectual Disabilities
- Evaluating research for yourself: How to find, interpret, and weigh evidence in science articles
- Transitioning to Adulthood: Creating your Village
References
- Duerksen K, Besney R, Ames M, McMorris CA. Supporting Autistic Adults in Postsecondary Settings: A Systematic Review of Peer Mentorship Programs. Autism Adulthood. 2021 Mar 1;3(1):85-99. doi: 10.1089/aut.2020.0054. Epub 2021 Mar 18. PMID: 36601268; PMCID: PMC8992890.
- Morris IF, Matta, C, Fung, L. A Scoping Review of Peer Mentoring Programs for Autistic College Students. Review Journal of Autism and Developmental Disorders 2022 May 11. doi: 10.1007/s40489-022-00325-7.
- Nachman BR, McDermott CT, Cox BE. Brief Report: Autism-Specific College Support Programs: Differences Across Geography and Institutional Type. Journal of Autism and Developmental Disorders. 2022 Feb;52(2):863-870. doi: 10.1007/s10803-021-04958-1. Epub 2021 Mar 26. PMID: 33770324; PMCID: PMC8813697.
- Gillespie-Lynch K, Bublitz D, Donachie A, Wong V, Brooks PJ, D'Onofrio J. "For a Long Time Our Voices Have Been Hushed": Using Student Perspectives to Develop Supports for Neurodiverse College Students. Front Psychol. 2017 Apr 18;8:544. doi: 10.3389/fpsyg.2017.00544. PMID: 28458645; PMCID: PMC5394111.
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