Participatory training: Highlighting the need for a more inclusive and interdisciplinary approach to training

What is participatory training?

We define participatory training as an approach to training service providers and research professionals that incorporates the views of autistic people and their families in all aspects of the training process and addresses the traditional power imbalance between service providers and service users/recipients. The concept of participatory training is parallel to that of participatory research, in which the views of autistic individuals and their allies are incorporated into every step of the process (Cornwall & Jewkes, 1995). Although traditional autism research culture has only minimally engaged autistic people in shaping priorities and conducting and disseminating research, there are indications of more recent improvements. Communities of researchers and autistic people are partnering to enact change (Stahmer et al., 2017), and there are calls for research professionals to build knowledge and skills to effectively use participatory research practices (Fletcher-Watson et al., 2019). In addition to participatory research, the concept of participatory training is based on research indicating that interdisciplinary or multidisciplinary collaboration is best practice in supporting autistic individuals in both educational and medical service sectors (Gerdts et al., 2018; Kunze, & Machalicek, 2022).

We call on the training community to embrace the concept of participatory training to bring the voices of autistic people and caregivers into the training environment as equals, and provide firsthand perspectives for practicing professionals early in their training. This approach can shape the development of trainees who will provide services and support to autistic people and their families throughout their professional careers, as well as empower self- and family advocates who can impact systems of care.

Opportunities for participatory training in neurodevelopmental disabilities through the Leadership Education in Neurodevelopmental Disabilities and related disorders programs

We share an example program that strives to use a participatory training model and to encourage the development of more participatory training models and programs (Association of University Centers on Disabilities, 2011b). We highlight here the Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) interdisciplinary training program. There are more than 60 LEND programs across the United States, funded by the Health Resources and Services Administration’s Maternal and Child Health Bureau. LEND programs are unique in that they require integration of both faculty and trainees representing a range of interdisciplinary professional backgrounds and diverse lived experiences, including autistic and neurodivergent adults and family members of autistic people. In LEND programs, the family and self-advocate training “disciplines” exist in parallel with disciplines such as psychology, speech/language pathology, and education.

Across LEND programs, faculty provide mentorship, clinical experiences, and didactic instruction to support trainee development over a 1-year training period. Trainees can be students, postdocs, residents, and fellows enrolled in graduate or postgraduate programs, practicing professionals, family members, or autistic/neurodivergent adults. Although each LEND training program is uniquely designed to meet local needs, all programs share core objectives to target leadership competencies focused on developing the knowledge, skills, personal characteristics, and values necessary to provide leadership in advocacy for autism services across specific professional disciplines. The Maternal and Child Health Leadership Competencies are organized within a conceptual framework that progresses from self to others to wider community, demonstrating the increased connections, broadening interests, and growing influence that leaders can experience over their career (Maternal Child Health Leadership Competencies, 2023). A distinctive feature and core competency of LEND programs is the focus on promoting advocacy skills, with the goal of preparing trainees to serve as leaders within their professional fields and community service programs to be change agents and allies for neurodivergent people.

LEND program data on trainee engagement and outcomes indicate that by 2022, approximately 1350 long-term trainees, 3000 medium-term trainees, and 13,000 short-term trainees participated in LEND across 60 sites (Leadership Education in Neurodevelopmental and Related Disabilities Fact Sheet 2024). Trainees show increased knowledge and skill across leadership competencies over time (Humphreys et al., 2018), with benefits sustaining after training is completed. One examination of outcomes 2 years posttraining found that compared to non-LEND peers, LEND trainees were more likely to work with maternal and child health populations, be engaged in advocacy, integrate a systems perspective in their work, and have experience conducting research (Bishop et al., 2023). LEND graduates continued their interdisciplinary focus posttraining, working with a greater number of disciplines in their professional roles than their comparison peers (Bishop et al., 2023). Trainees also benefited from learning about the perspectives of families of children with neurodevelopmental disabilities, which enhanced trainees’ engagement in family-centered care practices as well as their understanding of the “lived experience” of disability (e.g. Graybill et al., 2022; Keisling et al., 2017). Although the inclusion of family and self-advocate trainees is intended to both enhance the broader trainee cohort and provide relevant training for family members and autistic self-advocates, much less research has been conducted on the outcomes for family and self-advocates participating in LEND. Only one recent study has explored the experience of self-advocate trainees, finding that self-advocate trainees experienced strong feelings of inclusion within the training cohort (Wayne et al., 2024). More exploration of the outcomes of LEND training for family and self-advocates trainees is needed (Kaufman & Baer, 2015).

San Diego LEND program

The San Diego LEND program is a recently developed LEND program. It is administered by the University of California, San Diego, in collaboration with San Diego State University and Rady Children’s Hospital-San Diego. The program focuses specifically on applying implementation science to address disparities in access to evidence-based services in our community. One of our program priorities is to develop a participatory learning environment focused on community engagement and impact. Below we highlight some of the elements of LEND that have been less represented in the research literature, including a primary focus on the family and self-advocate disciplines, and provide examples of benefits and considerations related to our implementation of a participatory training approach.

The LEND program structure provides opportunities to build multiple layers of community, which is enhanced through the participatory training model. Among diverse trainee cohorts participants build community through collaborative work, small group discussions and reflections, and shared experiences in clinical and community programs. Within San Diego LEND, faculty and trainees partner with community organizations to provide support and enhance the learning experiences and professional connections for trainees. An example of the benefits of San Diego LEND’s multiple layers of community is highlighted by one self-advocate trainee’s transition into social work, which is shared here: One reason I applied to LEND is to change careers. I found it difficult without relevant work experience or education. What attracted me to LEND was the inclusion of neurodivergent self-advocates and the value placed on lived experiences, not just professional or academic. LEND presented an opportunity to gain experience and a network while exploring different career paths without the added pressures of a degree program. Ultimately, LEND helped me start a career in social work as a San Diego Regional Center (SDRC) service coordinator for persons with developmental disabilities. Through seminars and clinical observations, I learned about the Regional Center system and connected with SDRC employees to learn more about the service coordinator job. Through community activities, I developed professional relationships, one of whom later served as a reference. Three months in at SDRC, I am doing well at my job and continue to grow the connections made through San Diego LEND.

In San Diego LEND, we work to realign the bias toward professional expertise versus lived experience by uplifting family and self-advocate trainees and faculty and focusing on these disciplines. Lived experiences are valued as a critical part of the content and curriculum within LEND. This begins at the program level with didactic training content led by faculty from the family and self-advocacy disciplines with lived experience perspectives integrated throughout the curriculum. The idea that everyone is learning and can learn from each other guides all program activities, and family and self-advocate faculty and trainees are viewed as experts in their disciplines in the same way as the practicing professional disciplines. One example of this realignment was demonstrated when a self-advocate and family trainee (autistic self-advocate who is also the mother of an autistic child) was paired with an academic trainee (clinical psychology doctoral student) for a community project to create visual materials for caregivers of autistic patients within a pediatric healthcare system to make health care visits for those patients less stressful and more effective (i.e. “Autism Friendly”). Both trainees contributed based on their areas of expertise and experience; the self-advocate/family trainee led the identification and development of visuals that would be most easily understood by caregivers and autistic children and the doctoral student trainee integrated content from their clinical discipline.

San Diego LEND works to create opportunities for trainees to develop humility around structural forms of oppression in both their personal and professional lives. This pursuit is greatly enhanced by the inclusion of the family and self-advocacy disciplines, which allows for consideration of the intersectionality of social categories such as disability, race, gender, socioeconomic status, gender identity, and sexual orientation. One example is the rich training provided by the San Diego LEND family discipline faculty. Family discipline faculty provide didactic instruction on the Healthy Outcomes from Positive Experiences (HOPE) framework (https://positiveexperience.org/), encouraging trainees to consider and promote the development of a range of protective factors for children with disabilities and their families. In addition, during annual parent-led panels, parents share their experience raising Black and Latinx autistic children, promoting learning about intersectionality, the connections between ableism and racism, and the disparities in health outcomes for people with disabilities who are also from minoritized backgrounds. These personal narratives provide training experiences that build and further contextualize didactic content about service disparities.

LEND programs have a strong focus on promoting advocacy skills. All trainees, including self-advocate and family trainees, learn skills that prepare them to impact change.

Within San Diego LEND, trainees engage in didactic instruction (both participating in and leading training seminars) and have opportunities to practice and implement these skills through community training experiences. An example of the process and outcomes related to advocacy is showcased in this San Diego LEND self-advocate trainee’s narrative: For the Community Action Project, I was paired with the Autism Society San Diego to support the development and implementation of an Autism Social and Mental Health Conference. Having a history of social and mental health challenges myself, and being personally familiar with services, I was eager to share my perspectives but found it challenging to share my thoughts initially. My “default” is to keep to myself, sometimes out of fear of rejection, sometimes because I can’t form the words to express myself. Regardless, my community mentors made sure to include me in discussions and asked my opinion before moving on to the next topic. I felt valued, which motivated me to contribute and gain confidence to speak in future meetings. Moreover, guided discussions with my LEND mentor helped me form opinions and communicate suggestions. Observing how faculty and peers share their perspectives further helped me learn advocacy skills. At the conference I presented on the neurodiverse panel “Relationships in Neurodiversity.” I saw this as an opportunity to apply advocacy skills beyond myself. I spoke about relationships and offered solutions to interpersonal problems. Attendee feedback noted this session as helpful and informative, which reinforced to me the importance of self-advocacy. Now months after LEND, I apply my advocacy skills as a service coordinator for adults with developmental disabilities and committee member for the next Autism Social and Mental Health Conference.

Considerations in designing participatory training programs

Effective implementation of inclusive and participatory training requires careful consideration of several elements. One key consideration is program context. LEND programs exist within university systems and partner with local hospitals and/or health care centers (Association of University Centers on Disability (AUCD), 2011a). This structure allows for exceptional interdisciplinary training through access to expert faculty, facilities, and other resources; yet, trainees who are not part of academic training programs may encounter difficulty accessing all elements of the program (e.g. due to work or family responsibilities or a lack of protected time for education/training). One way LEND programs nationally address this issue of access is by providing compensation for all trainees completing 300 or more hours in LEND, with the aim of ensuring protected time to participate in training elements. One strategy San Diego LEND in particular has found helpful is to schedule activities outside of traditional work hours, including weekends and evenings.

Another key consideration regarding program context is that the structures of learning and communication in LEND may be more familiar to some groups of trainees and faculty than others, making it critical to attend to Universal Design for Learning principles (Burgstahler & Russo-Gleicher, 2015) to reduce learning and participation barriers. While all training programs have participants with different learning styles, the inclusion of neurodiverse trainees as well as faculty requires consideration of inclusive norms. Program norms can make training experiences and expectations predictable for both trainees and faculty, provide guidance on interpersonal interactions, and support co-learning. For example, one important norm for San Diego LEND is that we collectively work to define acronyms and other discipline-specific jargon to reduce barriers to understanding and help everyone fully engage with the content. In addition, we develop individualized development plans based on trainee’s individual goals and have built-in flexible options to meet program requirements.

Summary and recommendations for the field

In summary, we offer a description of the LEND program experiences from San Diego LEND specifically to illustrate an example application of participatory training.

Participatory training is a strategy to bridge the disconnect between service delivery and the priorities and lived experiences of autistic individuals and their families through the development of equitable partnerships. Participatory training has the potential to address service disparities, and enhance outcomes for autistic people and their families, and systems of care broadly. We encourage the field to continue adapting the training environments, structures, and resources to support accessible engagement in professional and leadership development programs.

We also encourage the research community to study the effects of participatory training on outcomes for practicing professionals, autistic people and their families, and systems of care broadly.