Managing Incontinence with Autism

April is Autism Awareness Month

It’s estimated that one in every 100 children around the world has autism spectrum disorder (ASD).^[1] In the U.S., that number rises to 1 in 36 children, a staggering statistic that transcends race, socioeconomics, and geography.^[2] And as diagnostic methods have become more adept and early-screening processes have become more normalized, that number has risen significantly in recent years. Furthermore, while reporting and documentation remain less thorough for adults with ASD, both in the U.S. and abroad, most available statistics illustrate similar trends.^[3]

Like other forms of neurodivergence, ASD symptoms and severities can vary widely. While ASD most commonly affects the way people behave, communicate, interact, and learn, individual abilities and deficits differ significantly from person to person. Some autistic adults will require constant help and support in their daily lives, others work and live independently.

Autism and Incontinence in Adults

As with many developmental disorders, people with ASD are more likely to experience or develop incontinence. Unfortunately, most research and available information on the topic pertains strictly to autistic children, excluding adults from the conversation.

However, one study from 2019 observed at least one type of incontinence in nearly 82% of the adults with ASD who participated,^[4] suggesting a strong link between autism and incontinence, regardless of age.

Many autistic adults experience either urge incontinence, functional incontinence, or some combination of the two. It’s very common for both children and adults to have difficulty registering the urge to urinate until it’s too late. Additionally, nocturnal enuresis (bed wetting), bowel disorders, and constipation are all common – though not commonly discussed – struggles for individuals with ASD.

For those with functional incontinence, the issue can be slightly more complicated. Many non-verbal individuals are incapable of effectively communicating their urges, regardless of their ability to register them, and others have mobility restrictions or sensory challenges that prohibit them from independently using the bathroom.

Sensory Issues

One of the most pervasive characteristics of autism spectrum disorder is the experience of sensory challenges. Autistic individuals often experience hypersensitivity or hyposensitivity (or both) to a range of stimuli.

For individuals with hypersensitivities, bright lights, specific sounds or smells, textures, and even one’s own bodily cues and sensations can become immensely overwhelming. And on the other hand, common hypo-sensitivities (under-responsiveness) contribute to issues like urge incontinence in which the individual has difficulty recognizing internal sensations, such as the urge to urinate.

For people with sensory issues, the act of using the toilet can be incredibly strenuous. Taking off clothing, the sound of a toilet flushing, and even the feeling of simply sitting on a cold toilet seat can be uncomfortable and overwhelming. As a result, some autistic people prefer the familiar sensation and security that diapers provide.

But importantly, this isn’t true of all diapers. Many individuals who experience both autism and incontinence struggle to choose the right diapers that feel comfortable in the face of sensory hypersensitivities. Skin-irritating materials, cheap-feeling plastics, and scratchy tabs are all common complaints, which is why it becomes doubly important for these individuals to find quality absorbency products that can last for long stretches of time.

Helpful Solutions

There are certain tricks and methods that can help make using the bathroom easier for autistic adults – both with diapers and without.

• Seek out sensory accommodations when possible, or alternative toileting equipment if necessary. While we know these can be challenges in public settings, private or “family” restrooms can offer some reprieve.

• Find support from healthcare professionals, including both occupational therapists and behavioral and cognitive therapists, who specialize in working with autistic adults. They can offer tailored strategies and interventions to support toileting independence and helpful tactics for the proper use of absorbency products while minimizing sensory overload.

• Invest in premium diapers and supplemental absorbency products to reduce the number of changes in a day and protect sensitive skin from irritation.

NorthShore Care Supply offers a particularly helpful “try before you buy” service that provides up to six free samples for anyone curious about our products, so you can find the best products that work for you without any prior commitment.

Best Diapers for Autistic Adults

NorthShore carries briefs with tabs in absorbencies from heavy and maximum to massive. Our most absorbent brief, MEGAMAX, offers up to 12 hours of capacity for all-day or all-night protection with a plastic backing. For those who prefer a softer, cloth-like material, MEGAMAX AirLock is a great option. In either case, the super absorbent core is designed to quickly wick away moisture and lock it away from the skin to keep you or your loved one feeling dry and comfortable.

Protective Underwear for Autistic Adults

Some autistic adults may engage in self-stimulatory behaviors (stimming) such as rocking and pacing. These active movements don’t have to present challenges when trying to be dry and free of leaks. For incontinent autistic adults, pull-up style incontinence products can offer a low profile without tapes and tags that might be bothersome for those with sensory issues. GoSupreme Pull-On Underwear provides maximum absorbency as well as a printed wetness indicator to help caregivers know when it’s time for a change. GoSupreme Lite is another popular choice that is lightweight, discreet and offers the same great protection as GoSupreme but with less bulk.

NorthShore GoSupreme and GoSupreme Lite Pull-On Underwear

For some autistic adults, wearing diapers can be a normal part of everyday life and sensory issues may cause challenges finding the supplies and diapers autistic people will tolerate. That is why it is so important to have access to the latest information about the best incontinence products and supplies. If you have any questions or need help determining the best products to try our customer care team is happy to help! Call (800) 563-0161 or email us anytime, or you can learn more about our sample program online. For family caregivers and parents caring for autistic children, check out our article on toilet training tips for children with autism.

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a physician or other qualified healthcare provider with any questions you may have regarding a medical condition. 

Regardless of capacity, an absorbent product must be changed immediately following a bowel movement.

[1] https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders

[2] https://www.cdc.gov/ncbddd/autism/data.html

[3] https://www.cdc.gov/ncbddd/autism/features/adults-living-with-autism-spectrum-disorder.html

[4] https://www.practiceupdate.com/content/bladder-and-bowel-dysfunction-in-adults-with-autism-spectrum-disorders/86263