Our Journey: From diagnosis to independence. What will it look like?
When my autistic daughter was diagnosed with type 1 diabetes at 10 years old, I had no idea how much our lives would change. In this new world of chronic medical conditions, we quickly figured out that knowledge is power—or rather, the difference between thriving or merely surviving. From my perspective as a mother, diabetes management hinges on two major factors: access to accurate medical information and executive functioning skills—planning, organization, remembering tasks, and problem-solving under pressure. Without both, any semblance of independence is nearly impossible. As we traveled further along this T1D journey and my daughter became a teenager, I recognized there were several barriers for her to gain the skills to manage T1D with increased independence (interdependence).
Barrier #1: Access to Comprehensive T1D Education
Diabetes management is complex, with constant decision-making required throughout the day. Yet, many children (and parents) struggle to find education that breaks down these concepts in an accessible way. The learning curve is steep:
- Understanding how insulin works and why timing matters.
- Knowing how different foods affect blood sugar and how to adjust doses accordingly.
- Learning to recognize patterns in blood sugar trends and how to adjust for them.
- Navigating the impact of hormones, illness, and exercise on diabetes management.
For neurodivergent kids like my daughter, traditional education materials often fall short. They are either too text-heavy, too abstract, or assume that the learner can generalize knowledge easily. But learning about type 1 diabetes isn’t just about memorizing facts—it’s about applying them in real-world situations, often under pressure. Without clear, engaging, step-by-step education, my daughter would be left without the knowledge she needed to manage this condition effectively.
Why Accessible Education Matters
This gap in type 1 diabetes education was one of the main reasons animaT1D was created. I am so grateful that Dr. Radhika and I serendipitously connected to create this resource. My daughter isn’t alone in this struggle. Just because she learns differently doesn’t mean she isn’t capable—it just means she needs a different approach to understanding diabetes care: a visual one.
But when we looked for engaging, comprehensive educational materials that accounted for visual learning styles, they were nonexistent. Most diabetes education is designed for either young children (with full parental management) or neurotypical teens transitioning to independence. The assumption seems to be that by a certain age, kids will “just take over” their care. But what happens when they can’t?
The reality is that neurodivergent kids benefit from:
- Step-by-step, visually engaging explanations of type 1 diabetes, not just text-heavy guides.
- Concrete strategies to build understanding alongside diabetes care (like structured videos, interactive learning, and simplified instructions).
- Empowering narratives that don’t shame them for struggling but instead help them problem-solve in a way that works for their brains.
- Support for parents who are trying to balance fostering independence with ensuring their child’s safety.
Building independence in diabetes management is not just about learning the steps—it’s about understanding how to use them in everyday life. And that’s why we need education that meets neurodivergent kids and all kids where they are, with empowering, accessible and evidence-based education.
(Stay tuned for a future post in which I will explore a second major barrier to independence: executive function and the mental load of T1D.)
If you’re navigating this journey too, what educational resources and strategies have helped your neurodivergent child learn about diabetes?
Please enjoy this animaT1D video about what type 1 diabetes is. Watch it with your child, regardless of their neurotype. What do you think? Was it helpful for you or your child?
From Overwhelm to Empowerment: The Role of Education in Type 1 Diabetes
“Knowledge is power.” Though it may sound cliché, these three words hold deep meaning, especially when it comes to managing your health. The more you understand, the less uncertainty and fear you feel. This principle applies to many aspects of life, but when it comes to Type 1 diabetes, it’s especially significant. Managing Type 1 diabetes is often compared to parenting a newborn—though overwhelming at first, it becomes easier and more intuitive over time. Like any journey, it has its challenges, and every milestone comes with its own set of hurdles.
At diagnosis, there’s an overwhelming amount of information to absorb. From daily routines to troubleshooting, and understanding broader concepts, the learning curve is steep. However, research shows that diabetes education can have a profound impact. Studies have consistently demonstrated that comprehensive education leads to better blood sugar control (measured by HbA1c), improved quality of life, and even cost savings over time.
Despite its clear benefits, many people with diabetes still lack adequate education. According to research by the International Diabetes Federation (IDF), nearly one in four people (26%) diagnosed with diabetes report not receiving enough information from healthcare professionals. An online survey conducted in December 2021 revealed that 22% of adults with Type 1 diabetes and over 27% with Type 2 diabetes received little to no guidance about their condition upon diagnosis.
How Can You Empower Yourself with Education?
If you’re working with a diabetes care team, take full advantage of your appointments. Most people see their team every 3-4 months, but these visits can be more than just routine check-ups. Use this time to ask questions. Simple queries like “Why?” or “How?” can lead to powerful insights. For example:
- “How do I interpret my blood sugar trends?”
- “How do I make adjustments to my insulin doses?”
- “Why does exercise affect my blood sugar levels in unexpected ways?”
- And, of course, the question that baffles us all: “How do I dose for pizza?”
Also, check out our YouTube channel: animaT1D, and for Spanish speakers, animaT1D en Español. Our mission with animaT1D is to offer a comprehensive collection of free, informative, and evidence-based videos created by healthcare professionals, designed to empower individuals and families living with type 1 diabetes. We are bridging the diabetes education gap by offering material that’s freely accessible and culturally inclusive, overcoming barriers of geography and language. We’re just getting started, and there are some exciting partnerships and initiatives on the horizon that will help us get even closer to our goal.
I invite you to watch our introductory video to learn more about our journey and about how the videos are made.
