Around 1% of the world’s population has autism spectrum disorder. It is the most common developmental disability in the world. While people “on the spectrum” can manifest the condition differently, we’re united by many commonalities and concomitant conditions.

As an autistic person, and parent of an adolescent who lives with autism and type 1 diabetes (T1D), I observe first-hand how autism affects our way of interacting with the world, and how developing effective coping mechanisms is essential for how well we operate in society.

Right now, the relationship between autism and T1D isn’t quite clear — nor is it supported by robust evidence. In fact, a study of over 10,000 participants in the T1D Exchange Registry found autism statistics were similar to those of the general public. Others have yielded different results.

In 2023, a meta-analysis of 34 studies found a 57% higher risk of developing diabetes in those living with autism when compared to neurotypicals (people without autism). More studies are underway.  Let’s dive deeper into autism and diabetes — and discover how to thrive with both conditions.

What is autism?

Autism is a developmental disorder that begins in childhood. Each person has their own strengths and challenges with a broad range of effects on processing, communication, and behaviors. The term “autism spectrum” is used to unite people across that range with a single diagnosis.

Some autistic traits, such as shyness or repetitive behavior, are common in neurotypical people, too. This has led to a lack of consensus on whether some associated traits are symptoms of the condition, or not.

Having autism does not indicate low intelligence levels. In theory, many neurodivergent people have higher-than-average intelligence levels and exhibit hyperlexia or reading beyond their average grade level.

While root causes of autism are unknown, they’re thought to be multifactorial, involving genetic and environmental components. Recent research from UCLA highlights seven genes that may carry 50% of this genetic risk.  Suggested environmental triggers include air pollution and nutrition, but more research is needed.

Common symptoms of autism

Life on the autism spectrum is complicated, with different individuals exhibiting a wide variety of symptoms to varying degrees.  Autism symptoms are divided into two primary groups:

  • Social interaction and communication
  • Restricted or repetitive interests and behaviors

Additionally, people with autism often have difficulty reading and responding to social cues — that come more naturally to the neurotypical. A person may have difficulty with the following:

  • Making and holding eye contact
  • Showing appropriate facial expressions that correspond with emotions
  • Joining groups of people in an activity

Repetition and restriction manifest in many ways. Many people enjoy arranging objects in a particular order, others may repeat words or phrases or engage in repetitive movements like spinning or rocking.

For many people, symptoms of autism overlap with common childhood behaviors, making a diagnosis even more challenging. That’s why close observation is necessary throughout a child’s life. Receiving an early diagnosis and effective interventions are associated with improved outcomes.

How is autism diagnosed?

Unlike T1D, there is no medical test to diagnose autism. It’s a mostly observational and historical process. In other words, providers “watch” someone’s behaviors and listen to shared perspectives from parents, teachers, and other caregivers about their developmental history.

While a child can be diagnosed as young as 18 months, in most cases, it takes longer. Because of this, many won’t receive an autism diagnosis until young adulthood — even if they’ve had symptoms their entire life.

Again, autism can be difficult to diagnose because it shows up in so many ways. Typically, a pediatrician will identify concerns at an 18-month or 24-month well-child visit — after assessing developmental milestones and behaviors. Then, the family is provided with a referral to a specialist or team of specialists, including a child psychologist.

Providers compare findings with the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and may do genetic testing as well. For these reasons, it can be a lengthy process to diagnosis.

Tips for living with both conditions 

Autism adds several challenges to life with T1D. On average, children with autism are five times as likely to have food issues as neurotypical children, and up to four times as likely to report gastrointestinal issues (nausea, stomachaches, and taste/texture sensitivities).

A sensitivity-restricted diet can make managing T1D even more challenging. That said, continuous glucose monitoring and insulin pumps can help with both conditions, as people with autism often relate well to technology — and adapt to it easily.

The increased anxiety and mental stress associated with T1D and autism can compound one another. And, difficulties in communication can make it hard to express needs, especially in tense situations. Here’s what you can do to help:

  • Be aware of “triggering” situations
  • Share best practices on deescalating situations with your child’s support network
  • Keep to routines (this helps with T1D, too!)

Please know, it’s possible to thrive with both conditions. My son is a healthy, fascinating teenager who loves food, video games, and going to the gym. His “twin” diagnoses don’t define who he is, but he’s stronger and more resilient because of their challenges.

Autism awareness and support resources

There are numerous organizations providing community and support for people affected by autism.  Here are a few.

The Aspergers/Autism Awareness Network is a thorough and unbiased resource with extensive resource pages, training, mentoring, and more.

Autism Speaks is one of the longest-running resource and advocacy organizations for people on the spectrum. It sponsors worldwide research initiatives and awareness campaigns.

Sesame Street has put together a warm and welcoming resource page for parents of young children to understand and celebrate autism.

While the connection between diabetes and autism is still being explored, through research, we’re getting closer to identifying the factors involved with each condition. While many people don’t see autism as something to “cure,” understanding more will help people to thrive with these two conditions.