Interoception in autism - אינטרוספציה ואוטיזם
- motim51
- Jan 30
- 8 min read
Our brain receives information from eight senses: sight, hearing, taste, smell, touch, proprioception (the sense of body position in space), balance, and interoception.
Interoception is a sense that is less known, discussed, and researched.
A fascinating new article provides an in-depth review of interoception and its link to autism, offering guidelines and recommendations for dealing with interoceptive difficulties.
What is Interoception?
Imagine the body has an internal alert system that tells us: "I'm hungry," "I'm cold," "My heart is beating fast because I’m stressed."
This system is called interoception.
For many autistic people, this alert system works a bit differently:
Sometimes they do not feel the signal (for example, they don't feel thirsty until they are severely dehydrated).
Sometimes they feel it too strongly. For example, a normal heartbeat feels to them like loud and frightening heart palpitations.
Interoception is defined as the ability to sense, interpret, and integrate internal signals from the body (heart, lungs, digestive system, pain, temperature, immune system, and hormones).
It is the basis for the sense of self, emotions, and independent management of daily needs.
The ability and right to make independent decisions about one's body may often be impaired in autistic people due to interoceptive differences that make it difficult to respond in time to physical needs.
Testimonies from autistic individuals describe daily difficulties in identifying sensations such as thirst, the need for the bathroom, illness, or pain, which prevent the development of vital skills for independent and fulfilling lives.
Current Research Findings and Their Problems
Most research to date has been based on group comparisons using tasks and questionnaires developed for non-autistic populations.
It treats any deviation from the non-autistic norm as a deficit, despite there being no clear definition of what optimal interoception is, and without a strong link to functioning in daily life.
The complexity and criticism of measuring interoception can be demonstrated in objective tasks, such as cardiac interoception.
Two situations are usually tested:
Heartbeat counting: The participant is asked to listen to their heart and quietly count how many beats they feel during short intervals (e.g., 25, 35, 45 seconds), without feeling their pulse by hand or neck. Simultaneously, the actual pulse is measured via ECG or a heart rate sensor.
The proximity of the subjective count to the actual number of beats is then calculated; this is the measure of "interoceptive accuracy" according to the classical definition.
Synchronous discrimination tasks: The participant hears a sound (beep) in real-time, and the goal is to judge whether the sound is synchronized with their heartbeat or not.
For example, short series of beeps are given either very close to each heartbeat (synchronous) or with a certain delay (asynchronous).
After each series, the subject answers if the sound was with the heart or out of rhythm. This tests the ability to identify a connection between an internal signal (heartbeat) and an external stimulus (beep), and how much the person feels the pulse at the resolution of sync/out of sync distinctions.
Autistic people often identify fewer heartbeats in the counting task, but in discrimination tasks (sound-heartbeat synchronization), they are often similar to non-autistic people.
Self-report questionnaires show a complex picture: autistic people may report high attention to the body in questionnaires measuring hyper vigilance and anxiety, but lower attention in questionnaires measuring a sense of body safety.
This means that more attention to internal sensations is not necessarily adaptive interoception, the kind that improves daily functioning.
Very few measurement tools were originally developed for autistic people.
However, in tools that were, a wide range of experiences is seen, including under or over awareness of various signals, showing that simple more/less models are insufficient.
Neglected Aspects of Interoception in Autism
The extensive focus on the heart likely hides more important areas such as the digestive system, connective tissue disorders, pain, menstruation, immune systems, and hormones areas where the prevalence of difficulties among autistic people is high and are closely related to daily functions like bathroom use, nutrition, and hydration.
Chronic illnesses causing pain and discomfort may lead to a reduction in signal levels from these areas.
This has broad implications for functioning, such as a lack of awareness of constipation, pain, or satiety until a late stage.
Neurodevelopmental comorbidities, ADHD, sensory regulation disorders, tics, DCD (Developmental Coordination Disorder), and more, are also linked to interoceptive variance, but are rarely taken into account when analyzing the autistic profile.
Alexithymia and Interoception in Autism
Sometimes the problem is not the sensation itself, but the translation.
Alexithymia describes a condition where a person struggles with processing, identifying, and verbally describing emotions.
A child feels something in their stomach, but they don't know how to say if it is hunger, a need to use the bathroom, butterflies from excitement, or a stomach ache from fear.
Because they don't know how to name it, it often bursts out as restlessness, crying, or accidents in their clothes, simply because they are overwhelmed by a sensation they don't understand.
How is it related to autism?
In the past, it was thought to be an inseparable part of autism, but today it is understood that this is not always the case:
Approximately half of autistic people experience this difficulty in identifying emotions (alexithymia).
For many children, the difficulty is verbal, the tasks given to them to check their sensations require them to speak and explain, which is a challenge in itself.
What can be done at home?
Instead of waiting for the child to say "I'm thirsty" or "I'm stressed," we can help them connect external signs to an internal sensation:
"I see your lips are a bit dry, maybe your body is signaling that it's thirsty?"
"Your heart is beating fast now; that happens sometimes when we are excited or a bit worried."
Using emotion boards or sensation intensity thermometers can help them show us what they feel without needing complex words.
It is also possible that alexithymia, as a difficulty in giving verbal expression to internal states, explains a significant portion of the variance in standard interoceptive tasks, as the tasks themselves require participants to verbally describe their internal (interoceptive) states. However, the question of whether this means autism is not linked to interoceptive variance has yet to be unequivocally proven.
Examining the distinctness of these concepts and how they relate to interoception is a key question for future research.
Monotropism and Interoception in Autism
Monotropism, a theory developed by autistic individuals, describes a tendency for narrow and intense attentional focus.
Consequently, other stimuli, including signals from the body, fail to penetrate when attention is absorbed in an area of interest.
According to this approach, many interoceptive difficulties stem not from a lack of signals but from reduced accessibility to them while attention is directed elsewhere.
Reports from autistic people about being immersed in an activity to the point of forgetting to eat, drink, use the bathroom, sleep, or change position well demonstrate this mechanism.
The monotropism model predicts significant intra individual variance: in situations where body attention is encouraged, such as a quiet lab task, performance can appear typical.
Conversely, in states of high engagement in action where there are many stimuli, body awareness drops, which may explain some of the contradictions in research findings.
Links to Emotional Regulation, Health, and Sexuality
Interoception is presented as the basis for emotional regulation: identifying an internal change, integrating it with context, mobilizing a response (autonomic, hormonal, behavioral), and monitoring it.
In autistic people, there are likely differences in several stages of this chain, while pain, fatigue, and unmet needs further weaken the ability to regulate.
Interoceptive difficulties may contribute to:
Meltdowns (a state of temporary loss of control due to overload; expressed in crying, shouting, etc.).
Shutdowns (instead of exploding, the body simply "turns off the lights" to protect itself from overload).
Self-harming behavior.
This occurs both through missing early warning signs and through increased physical distress. Thus, movement, searching, pressure, or self harm can be attempts at regulation or communication about pain.
Interoception is also essential for identifying and treating medical illnesses, against a background of high rates of chronic diseases, shortened life expectancy, and increased mortality in autism.
Autistic people report doubts about when to seek treatment and difficulty describing body sensations to professionals.
Sexuality is presented as another interoceptive field: although autistic people describe needs and desires similar to non autistic people, studies point to lower sexual well-being, more loneliness, and fewer intimate relationships.
Qualitative reports include difficulty identifying sexual desire and genital sensations, pointing to an interoceptive contribution that has not yet been examined in depth.
Critique of Measurement and Normalization
Normal ranges in interoception are not well defined even in non autistic populations, and many do not feel their pulse at all under laboratory conditions.
Therefore, it is difficult to interpret average differences as a clear deficit.
Researchers ask whether an optimal uniform interoception even exists, or if it is an individual balance depending on context, physical history, and the person's needs.
For example, for a person with chronic pain, reducing some of the signals may be adaptive and efficient for better functioning.
Existing tools hardly measure the areas of interoception that autistic people themselves identify as significant (such as thirst, bathroom use, early detection of illness), and therefore their contribution to improving quality of life is limited.
Support Strategies and Clinical Implications
Some existing treatments aim to reduce visible autistic behaviors, whereas strengthening bodily autonomy might sometimes be more appropriate.
The authors argue that interoceptive interventions should be community led, personalized, and aimed at improving the interpretation and use of body signals, not just increasing attention to them.
They warn that increasing body awareness (especially of the heart) could exacerbate anxiety if not accompanied by teaching understanding and context, as seen in other anxious populations with high physical alertness.
Practical example regarding drinking:
For autistic people who struggle to identify their thirst sensation, they are sometimes instructed to drink at fixed time intervals, according to a clock or timer, to prevent dehydration.
While this strategy ensures sufficient fluid intake, it contributes almost nothing to improving interoception, the ability to pick up and interpret signals from the body.
An alternative strategy that supports improving interoceptive skills would encourage the creation of links between physical signals and their meaning over time.
In the case of thirst, we could guide the person to monitor the color of their urine or its smell, and pay attention to body sensations (e.g., dry mouth, lips, or throat; headache; dizziness; or slowness and lack of energy).
The goal is that over time, the person will begin to link darker urine or a stronger smell to the appearance or worsening of certain physical sensations.
Eventually, even subtle sensations may encourage drinking without the need for direct urine monitoring.
There is a nice mantra (In Hebrew): "Clear pee is healthy for the body, yellow pee is not so good and you need to drink."
Conclusion
Due to sensory variance, autistic people who do report physical ailments are often dismissed by their environment.
A feeling of cold and dressing in long clothes might be dismissed by the environment based on a neurotypical interpretation: "It isn't cold now." Complaints of back pain might be dismissed after a superficial check as "nothing is wrong with the back," while the autistic person feels pain originating in the stomach differently and doesn't know how to explain it properly, leading to improper treatment.
Therefore, even when they feel something and report it, they encounter dismissal, leading them to stop reporting or become frustrated, receiving the message that their sensations are wrong.
The message is to believe the autistic person who does report, and to question and check more broadly.
Sources:
Palser, E. R., Lawson, W. B., Goodall, E., & Pellicano, E. Interoception in Autism, Pitfalls, and Promise: A Participatory Research Perspective. Autism in Adulthood, 25739581251414545. https://doi.org/10.1177/25739581251414545
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