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For most of us, bodily sensations of hunger, pain, and thirst are virtually automatic. We stub our toe while at the swimming pool and our nervous system sends a lightning-fast message to the brain. Our response is a loud, “Ouch!”, as we limp over to the closest chair to check for damage.
Normally, a good wash with disinfectant and a bandage would solve the problem. For people with intellectual or developmental disabilities (I/DD), the same scenario can easily lead to a completely different result due to problems with body awareness. The person may not notice their injury for hours, or even days.
They could become irritable, withdrawn, or tearful, yet still be unaware that they have a physical injury. When they or a caregiver finally notice, a small abrasion could easily turn into a more serious problem, such as an infection.
The ability to notice and understand what’s happening inside our bodies is called interoception. It’s one of our senses, just like vision, taste, hearing, hearing, touch, and smell.
When internal body signals are missed, needs are unmet, and it becomes difficult for us to take care of ourselves. If we have disabilities and rely on caregivers, they would also have difficulty meeting our needs. For many people with I/DD, body signals aren’t clear, or they are easily misunderstood.
In this blog, the team members at ALSO of Oregon explain key concepts of interoception, common signs, and how it affects daily life. We also provide clear guidance on how to manage interoceptive differences in people with I/DD.
Interoception has often been called the ‘eighth sense.’ It monitors what’s going on in the internal world of our bodies. For example:
We emphasize here that the purpose of the interoceptive sensory system is not just about feeling something — but knowing what this feeling means and knowing what to do next. Difficulties in interoception can have a major effect on daily life.
Research shows that interoceptive differences are common in autistic and other neurodivergent populations as well as individuals with attention deficit hyperactivity disorder (ADHD).
In addition to interoceptive challenges, there are a number of reasons why persons with I/DD might misinterpret (or completely miss) internal body signals.
There is a high prevalence of people with intellectual and developmental disabilities who also have sensory processing differences. When someone has a sensory processing disorder, the brain understands sensory information (such as sounds, lights) in a different way. This difficulty could also apply to internal body sensations.
Learn more: The Benefits of Sensory Play for Children with Disabilities
Many people with I/DD have difficulty speaking clearly due to physical impairments. Cognitive difficulties could also interfere with abilities in forming sentences. Nonverbal and non-vocal learners will be particularly challenged by communication barriers.
Unfortunately, the habit of separating individuals with I/DD from the rest of the community interferes with the opportunity to practice these much-needed skills. This is definitely the case if someone is in supported living. But these separations also occur in schools, social groups, families, and in the larger community.
Caregivers may mistake actual pain or other symptoms for behavior problems. As a result, they may overlook more serious medical issues. It’s particularly crucial for healthcare providers to understand the potential for diagnostic overshadowing in the I/DD population.
Knowing what to look for is the first step to helping someone improve their awareness of body signals. Check out this list of 7 common signs that loved ones and caregivers should watch out for.
Can you imagine being hungry and not knowing it? Moodiness and irritability can easily result in those who have interoceptive challenges and/or sensory processing disorders.
Dehydration can land people with I/DD in the hospital at a higher rate than those without I/DD. Proper fluid intake is a great way to avoid more serious illnesses. Remember that several medications increase the risk of dehydration. Caregivers should also watch out for:
Caregivers may notice sudden aggression, withdrawal, or meltdown. Research has stressed the importance of using appropriate pain assessment tools for those with I/DD. It indicates “abundant evidence” that pain levels for persons I/DD are at least as frequent as for those without I/DD.
Read more: 2019 — The Global Year Against Pain and the Vulnerable
No matter who we are, we all need our privacy. The person may be reluctant to even mention that they feel uncomfortable, despite bathroom needs. This makes identification of bathroom requirements particularly easy to miss. Continued accidents or distress related to bathroom needs are common.
Let’s say you’re supporting someone who knocks off on the couch frequently or is constantly coughing. If they seem confused or in disbelief at your concern, some essential body signals might be eluding them.
Cuing is a common activity amongst caregivers and can be very beneficial to those they support. There are times when cuing becomes excessive. For example, repeated reminders to:
Distress or anxiety without an obvious cause is difficult to peg. First, remember that the distress is actually seemingly out of nowhere. Compare notes with colleagues to try to figure out the root of the problem.
Missed body signals can lead to:
The best way to help those you support is to reframe the issue. Remind yourself that the issue is not noncompliance; it’s unmet internal needs.
These 6 strategies will help the people you support with I/DD become better able to manage activities of daily living (ADL), improve social involvement, and integrate within the community.
Use visuals and prompts for:
Caregivers can use several simple phrases to pair sensation with meaning:
Repetition and consistency of phrasing (even between caregivers) help to reinforce increased awareness.
It’s perfectly OK to change routines if needed. Just make sure communication about changes is clear and that the individual understands the change.
Above all, compare notes on observations with colleagues. Many heads are better than one!
These strategies provide ways to express internal states. A speech therapist may also be able to provide options for communication supports.
We recommend that you don’t wait for escalation. Through good observation and communication with the person you’re supporting, colleagues, family members, etc., you’ll be able to anticipate needs before distress builds.
What is interoception in people with I/DD?
Interoception is the body’s ability to recognize and interpret internal signals such as hunger, thirst, pain, fatigue, and the need to use the bathroom. Many people with intellectual and developmental disabilities (I/DD) may have difficulty identifying these body signals, which can affect health, behavior, and daily living skills.
Why do people with I/DD sometimes miss signs of pain or illness?
People with I/DD may experience differences in sensory processing, communication barriers, or challenges understanding internal body cues. As a result, pain or illness may appear as behavioral changes like irritability, withdrawal, anxiety, or aggression instead of clear verbal communication.
What are common signs of body awareness difficulties in I/DD?
Common signs include irritability caused by hunger, dehydration, bathroom accidents, difficulty recognizing fatigue, reliance on reminders for basic needs, and emotional distress that seems to appear unexpectedly. Caregivers often notice behavior changes before physical needs are identified.
How can caregivers support better body awareness in people with I/DD?
Caregivers can support body awareness by using visual schedules, consistent routines, simple communication prompts, AAC tools, and regular reminders for eating, drinking, rest, and bathroom breaks. Teaching body signals in concrete, repetitive ways can also improve self-awareness over time.
Why is recognizing body signals important for independence?
Understanding internal body signals helps people with I/DD manage daily activities, communicate needs, maintain health, and participate more fully in school, work, and community life. Improved body awareness can increase independence and reduce health crises or behavioral escalations.
When a person can’t read their body’s signals, the world becomes extremely difficult to navigate. It interferes with school, home life, and interactions with friends and family. It can lead to:
Essentially, problems with internal body signals are crucial to full community integration.
The right support isn’t simply external (such as cuing) but rather helping the individual understand what’s happening inside their own bodies. It’s a necessary element in becoming an independent individual.
Learn more about ALSO’s services to support individuals with I/DD in Oregon.
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