Sensory Issues, ADHD, Autism + OCD: Getting to Know Your Body Better Beyond Diabetes

According to the Cleveland Clinic, sensory processing disorders (SPD) are a group of conditions that affect how your brain processes sights, sounds, smells, movements or touch. If you have a SPD, you may over- or under-respond to these stimuli.

SPDs mostly affect children and adults with a form of neurodivergence, whether that’s an autism spectrum condition (ASC) or attention deficit/hyperactivity disorder (ADHD). However, some people have SPD without other conditions. Neurodivergence simply refers to a brain that develops or processes information differently.

People with diabetes (PWD) may have a combination of these or feel triggered by components of disease management without the presence of a SPD. In this guide, we explain how diabetes affects your senses and identify when more could be going on beyond feeling annoyed by site changes, patches, fingerpricks or skin buildup at the injection site.

Heightened awareness of bodily sensations

PWD, especially those with insulin-dependent forms (all people with type 1 and some people with type 2), may have heightened awareness of bodily sensations without suffering from ADHD or autism. Most PWD are extremely aware of their bodies because they have to pay close attention to how they feel when they have a high or low blood sugar level.

Years of diabetes management may lead you to do an internal scan throughout the day, subtly monitoring physical cues because diabetes management never lets up. Anticipatory highs and lows may even lead you to feeling overwhelmed, anxious or nervous in certain environments without warning.

Diabetes technology can drive your senses nuts

Diabetes technology may also be the culprit of sensory issues for PWD. Continuous glucose monitors (CGMs), insulin pumps, multiple daily injections (MDI) and infusion sets can all heighten your bodily awareness.

Common complaints about diabetes technology sensory issues include:

• Feeling the adhesive on your skin
• Itching beneath or near the injection sites
• Awareness of the tubing touching your clothing or other external materials (like furniture, doors or doorknobs)
• Sleep discomfort with devices
• Pain when lying on your sensors
• Clothing rubbing against the insertion site on your body

These complaints may also be a sign of device fatigue, in which case you may want to talk to your healthcare provider to see whether you can safely take a break from the technology, even for a few hours. Or they may help you learn better ways to improve the safety and comfort of wearing your device.

CGM alarm fatigue 

Alarm fatigue is a very real sensory input issue that affects PWD who use CGMs. Alarm fatigue can be dangerous. After years or decades of living with diabetes, you may find yourself growing unresponsive to alarms, or, conversely, waiting for the other shoe to drop all the time. You may find yourself constantly waiting to hear your Dexcom bells. You know the tones!

Frequent alerts can be emotionally exhausting, even though they’re effective and life-saving too. Without any let-up, they move in and out of the burden category over time. 

Sensitivity to touch with diabetes

After years of fingerpricks, injections, site changes or insertions, you may feel discomfort or increased awareness of certain areas of your body. Many PWD have preferred injection sites that just seem to respond better than others. While it’s important to rotate sites, most PWD will admit to rotating between a few.

But this can cause skin buildup beneath the insertion site, pain, swelling and discomfort. Even when not in use, this sort of pain can echo in your brain. 

Diabetes complications

Neuropathy, a common complication of diabetes, creates unforgiving sensory challenges for PWD. 

If you develop neuropathy, you may experience:

• Burning sensations
• Tingling
• Numbness
• Hypersensitivity to touch
• Pain from normally non-painful stimuli

Neuropathy is the queen of sensory issues, and she’s not easy to deal with.

Brain overload

In general, PWD may have a low threshold for stress—rightfully so. Because of this, some of the simplest day-to-day tasks you do as a human may feel overwhelming with diabetes.

PWD may feel sensitive to:

• Physical sensations
• CGM trends
• Food intake
• Activity levels
• Insulin timing
• Environmental factors

When day-to-day activities feel overwhelming, PWD should pay close attention and start evaluating whether something bigger may be at play. The presence of diabetes and neurodivergence requires a unique approach to management.

Neurodivergence and diabetes

Dr. Marina Basina, Endocrinologist, Clinical Professor Medicine of Endocrinology, Gerontology & Metabolism at Stanford Health Care, agrees that the mental burden of diabetes is huge. This can affect how an individual processes information and goes about their daily life.

From a clinical perspective, she shared that ADHD and autism may be more common in those with type 1 diabetes (T1D).

“I’m not sure if there is any genetic association or any kind of changes that happen in the brain with either hypo- or hyper-glycemia, but in general, I think for both children and adults, type 1 diabetes is definitely a huge burden,” Basina said. “It’s a 24/7 disease that does not have any days off and it’s really exhausting every minute. I think there was even a study showing individuals need to make 180 decisions per day to keep themselves alive. There’s a lot of diabetes distress and diabetes burnout.”

Autism spectrum disorder + type 1 diabetes

Breakthrough T1D says that people with T1D who also manage autism may need:

• A different style of communication
• Certainty—especially in routines and structure

Because autism may coincide with social unawareness, this can also create extra anxiety around disease management. Breakthrough T1D shares that although studies on the co-occurrence of autism and T1D are currently limited, what’s out there shows a higher prevalence of autism in children with T1D than in the general population.

People with autism can manage T1D very well. In fact, they may be able to use autism as their superpower to become super T1D self-managers. Conversely, autism can lead to negative patterns in disease management.

People with autism and T1D may experience:

• Shutdowns (meltdowns) or burnout: This could mean long-term exhaustion, lower functioning or heightened sensitivity to sounds or touch.
• Differences in how the body feels: They may have issues wearing diabetes technology.
• Extreme focus on the details of diabetes: They may avoid having extreme highs or lows because they’re laser-focused on their disease management.

“Diabetes isn’t normal for the general population or life,” Basina said. “There is no normal level of diabetes noise, so it may be difficult for someone with diabetes to see other challenges in themselves.”

Diabetes noise refers to the constant attention it requires in your head. Shutting down the noise completely can lead to dangerous situations with diabetes when left turned off.

A couple Beyond Type 1 community members can attest to the nature of this beast.

Community stories

One Beyond Type 1 community member shared that they were called to a studio apartment for a 28-year-old male who was found unresponsive by a coworker doing a wellness check after he’d missed two days of work. 

“His glucose was over 600 (mg/dL) and we believed he was in full DKA (diabetic ketoacidosis),” they said. “Once he was stable in the emergency room, the story came out in pieces. He’d stopped wearing his CGM and pump weeks earlier. He said that the adhesives felt like razors on his skin and that the alarms made him want to crawl out of his body. He’d been quietly skipping injections to avoid fingersticks he couldn’t bring himself to do.”

He was later evaluated and diagnosed with autism at the age of 28.

Another community member said that TikTok made them question whether they were living with ADHD.

“After years of dealing with T1D, I thought my reaction to the disease was pretty standard, but then I started seeing all of these videos about women being diagnosed later in life,” they said. “I resonated with their symptoms and experiences. That’s when I knew I should get checked out. I have all of the ‘classic’ signs of ADHD. I’m curious to learn whether I actually have it and how that diagnosis could affect my sense of self more deeply and how I manage my T1D.”

The second community member is in the process of being evaluated for ADHD after a psychologist encouraged them to be tested.

Should you be evaluated for ADHD or autism?

When thoughts, feelings or behaviors become overwhelming and inescapable, this could be a sign you should be medically evaluated. It could be a sign that something deeper, beyond T1D or type 2 diabetes (T2D), is going on. 

Signs you should be evaluated include:

• Frequently forgetting diabetes appointments, medications, devices or low blood sugar treatments
• Challenges following diabetes protocols or management strategies
• Trouble staying focused on your diabetes management or forgetting to manage your diabetes altogether
• Being described as a high-functioning but inconsistent self-manager

Executive dysfunction, OCD  and more neurodivergent challenges

People with neurodivergence may also experience executive functioning issues related to diabetes, which makes task completion difficult. It may feel difficult to control your thoughts, feelings or emotions if you suffer from executive dysfunction.

There may even be a connection between diabetes and obsessive-compulsive disorder (OCD). 

OCD symptoms may include:

• Distressing levels of anxiety
• Recurrent thoughts, impulses or ritualistic compulsions

In PWD, this may show up as checking your blood sugar seven times before bed or wiping your body with an alcohol swab three times before injection. You tell yourself you have to do it or something bad will happen.

If you are experiencing these types of challenges beyond diabetes management, that is especially a sign that you should be evaluated. T1D, while a huge part of your life, is just one part, and it’s important to zoom out and evaluate who you are as a whole person before jumping to a conclusion.

Take one step at a time

Not all people with sensory issues related to T1D or T2D have a neurodivergent condition like autism or ADHD, but some might. If you believe the way you show up or feel challenged by diabetes expands beyond it, seek support from your healthcare team. Start a conversation to gauge their thoughts. Rely on community. Learn about their experiences. 

There are many helpful influencers and clinicians, such as Rachel RN, CDCES, NC-BC, who shares about her experiences with diabetes and ADHD while helping others with it. She goes by the Instagram handle @givemesomesugardiabetes. 

Diabetes is overwhelming by itself. Thinking about whether you might have something on top of it can feel extra burdensome. You’re not alone! Support is ready for you, whenever you’re ready to learn more about who you are and how to show up for yourself even better than you already are.

Connect with a community that understands how complex it is to live not only with diabetes but also with other challenges like ADHD, autism, OCD or executive dysfunction. Find your community in our apps.