Groundbreaking Research Prioritizes autistic Voices in Maritime Study of Adult Services
Jose’s innovative approach initially surprised her superiors. “She was one of the frist to implement this strategy [SRAP] in practice,” noted epidemiologist Mathieu Bélanger, who recruited Jose in 2016 to lead a new branch of the Maritime SRAP Support Unit – SRAP standing for patient-oriented research strategy. While the project progressed more slowly than comparable initiatives, Bélanger acknowledged unforeseen benefits. “The team was able to look into questions that where much more crucial and had much more impact,” he stated.
In 2017, Jose launched a major data collection effort focused on autistic adults.The resulting findings, published in an article titled “The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study,” confirmed long-suspected disparities in service provision.
However, the journey of the CONNECT project, as it became known, was not without its challenges.Patricia George Zwicker, an autistic partner on the team, initially approached the research with caution. “I didn’t no what it would entail, but I had a feeling I wanted to get on board,” she wrote in an email, her preferred method of dialog. Zwicker admitted to a steep learning curve and, at times, feeling marginalized among the scientific researchers.
despite these hurdles, Zwicker persevered, eventually becoming the project’s research co-director. “Research is beginning to agree that people with lived experience should be partners, not just objects [of research],” she asserted. “But there is still a long way to go to understand that as an autistic person, I am the expert in my life.”
Zwicker recounted a notably disheartening experience at an international autism conference in Montreal in 2019. When she approached two researchers discussing autism and epilepsy – a common co-occurring condition – to share her own experience as an autistic individual with epilepsy, she was met with stunned silence. “They didn’t answer me, even though they should have been curious and interested in talking to me. How can they possibly serve my interests? Short answer: they can’t,” she lamented. It is indeed precisely these experiences that reinforce Jose’s commitment to a more inclusive research model.
Jose recognizes that even the language used when discussing autism can significantly impact families. Her approach, focused on patient researchers involved in all stages of the process, is fundamentally different. “It’s another way of doing research,” she admitted.
However, this method is not without its complexities. “It’s much more tough, it takes more time… it’s also more difficult emotionally,” Jose emphasized. She described frequent calls outside of regular working hours and the challenges of navigating interpersonal dynamics within the team. Such as, one team member’s obsessive-compulsive tendencies occasionally dominated meetings. Despite these challenges, Jose noted that the team generally worked well together, though a two-month pause was necessary to address conflicts.
despite the obstacles, the CONNECT team successfully published its initial findings in 2021, confirming the meaningful gaps in services for autistic adults.The study’s narrative resonates deeply with the researchers involved, highlighting the urgent need for improved support systems. The team’s work underscores a growing recognition that authentic inclusion – prioritizing the voices and expertise of autistic individuals – is not just ethically sound, but essential for producing meaningful and impactful research.
