In 2017, I started my Ph.D. application process, and my focus was only on self-management support for children and adolescents with type 1 diabetes. Meanwhile, I was watching a TV show called “Parenthood,” and the story of Max Braverman touched me. The autism storyline follows the family’s journey to accept Max’s diagnosis and support him while dealing with their own emotions. The show focuses on life with a developmental disability. It changed the route of my Ph.D. proposal. I began to think about the challenges of autistic children or adolescents to manage type 1 diabetes (TID).
I started to search in the scientific literature about this population. There was no article in any database about autistic children and T1D. How would I justify my research topic if there is no scientific publication on this topic? A reflection came to my mind: a scientist needs to go to the population to know their needs better when no data is available. It is not only articles published in journals that provide validation of a topic; it is also the population or individuals themselves. Thus, I began my search for blogs and support groups on social media and found families with autistic children with type 1 diabetes that were forgotten by the scientific community.
This population needed healthcare professionals that knew both conditions. During our conversations, mothers reported that their children faced unique challenges in managing T1D because of their social communication challenges of autism, such as self-care related to the insulin application and regulation, diet change, knowing and asking for help in hypo and hyperglycemia, and health education. Building a trustful relationship with healthcare providers is also a challenge because these professionals did not provide educational orientations about both conditions together.. I realized that these reports would be my justification. They are important! This population needed attention.
Therefore, my Ph.D. proposal focuses on identifying the self-management needs of autistic youth with T1D and ASD in order to develop new technologies to meet needs of both these conditions. Research is done to help communities to improve their health and ask them what they need. Knowing what the population really needs is essential as well as any report in a published article. Researchers need to be closer to their study population.
