Beyond words. An essay on understanding and bridging the somatic-psychiatric divide in autistic patients
- Inger Breistein Haugen
- Jan 5, 2018
- 6 min read
For psychiatrists, working with autistic individuals presents considerable clinical and ethical challenges - especially when mental illness and somatic conditions intertwine. Many of us have encountered patients whose symptoms defy traditional categorization. The phrase “lost in translation” resonates deeply in such cases - not only across languages, but between body and mind, behavior and intention, professional and patient. This essay explores the consequences of missed signals, the power of clinical humility, and the essential role of psychiatrists as both interpreters and allies.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is neurodevelopmental conditions characterized by persistent challenges in social communication, as well as restricted, repetitive patterns of behavior, interests, or activities. The term "spectrum" reflects the wide variation in how autism presents - from individuals who require substantial daily support to those with higher function, education, family and ordinary work, but experience subtle difficulties in different domains . Common features include differences in verbal and non-verbal communication, sensory sensitivities (such as being over- or under-responsive to sounds, smells, lights, or touch), and a preference for routine and predictability. While some individuals with autism also have intellectual disabilities, others may have average or even above-average intelligence, often accompanied by uneven cognitive profiles. The diagnosis is typically made in childhood, but many individuals are identified later in life, especially if their traits were masked or misunderstood. Understanding the diversity within ASD is essential for providing appropriate and effective support.
High rates of co-occurring conditions - and the risk of misinterpretation
Individuals with autism spectrum disorders have significantly higher rates of both psychiatric and somatic (physical) health conditions compared to neurotypicals. Anxiety, depression, attention-deficit/hyperactivity disorder (ADHD), and sleep disturbances are especially common, as are physical conditions such as gastrointestinal disorders, epilepsy, diseases related to the immune system, and neuromuscular diseases. However, the clinical presentation of these conditions can be atypical in autistic individuals. Changes in behavior, emotional regulation, or activity levels may be misinterpreted as core features of autism rather than signs of underlying illness. For example, increased withdrawal, mutism, or agitation might be seen as "typical autistic behavior" when they are actually manifestations of a depressive episode or unrecognized pain. This diagnostic overshadowing - where symptoms are attributed to autism instead of being investigated further - can lead to missed or delayed diagnoses, inappropriate treatment, and prolonged suffering. A more nuanced understanding of how autism intersects with other health conditions is essential for accurate assessment and effective intervention.
The silent Yes: helping when help feels too risky
Some people cannot say yes to help - not because they don’t want it, but because help implies change and uncertainty, and this can feel intolerable for autistic people. This paradox is particularly pronounced in autistic individuals with additional psychiatric or cognitive challenges. Not infrequently, this leads to healthcare professionals withdrawing, ending treatment, despite significant and concerning low functioning and symptom levels.
In such cases, we need to work slowly - at a snail’s pace - carefully searching for any flicker of consent or trust. We dwell in clinical grey zones, navigating between what is ethically sound, clinically indicated, and emotionally bearable. Sometimes, all we have to go on is our experience, our intuition, and our capacity to care deeply, even when the path is uncertain.
And sometimes, with patience and predictability, something stirs. A step is taken. A word is spoken. A young person begins to peek out from their protective cave - not because we forced them, but because we made it safe enough for them to do so.
When pain looks like psychosis
Autism can change the way people perceive, process, and express physical symptoms. Some are hypersensitive to bodily sensations - a mosquito bite can trigger hours of distress. Others may be hyposensitive, seemingly indifferent to serious illness or injury, but they often show other stress reactions. Communication challenges - nonverbal expression, idiosyncratic language, or alexithymia - further obscure the clinical picture.
In psychiatric acute care settings, these differences can be catastrophic. Behavioral outbursts, mutism, or withdrawal may be interpreted as signs of psychosis or severe mental illness. But the cause can be somatic: an undiagnosed infection like an otitis or UVI, a neurological condition, or chronic pain that the patient cannot describe.
Studies show that up to one in three patients with autism admitted to psychiatric units because of adverse behavior have an underlying physical cause for their symptoms. This calls for greater somatic vigilance within psychiatry. We must ask: what if the crisis is not in the mind, but in the body?
The medical encounter as a battlefield
Hospital environments are rarely designed for autistic people. Bright lights, corridors, waiting rooms, unfamiliar faces, and unpredictable routines can be overwhelming. Communication often breaks down before it begins.
Physicians may ask abstract questions or deliver information too quickly. Physical examinations - requiring touch, undressing, or invasive procedures - may be experienced as traumatic. Even treatment choices become fraught: the need for sameness can result in a refusal to take the most effective medication simply because its color or shape is unfamiliar.
Yet within these same patients, we often find strengths: meticulous memory of symptom progression, deep medical knowledge, or the ability to mask distress until it becomes unbearable. This masking can fool even seasoned clinicians, making it harder to detect who is suffering most. Strengths and special interests can also be the key to trust and collaboration, and the clinician who dares to think a bit creatively often ends up with a more patient more at ease and an easier job.
Studies show that up to one in three patients with autism admitted to psychiatric units because of adverse behavior have an underlying physical cause for their symptoms.
Beyond the silos: collaborative translation
Medical complexity is the rule, not the exception, in autism. Co-occurring conditions - epilepsy, gastrointestinal issues, sleep disturbances, immune dysregulation, scoliosis - are more prevalent. Their causes are not fully understood but likely involve overlapping neurodevelopmental, genetic, and immunological pathways.
To make sense of this, we need genuine interdisciplinary collaboration. Neurologists, psychiatrists, pediatricians, gastroenterologists, and geneticists must work together - not just to share data, but to translate it into actionable clinical understanding.
A patient with autism and scoliosis embodies this challenge: managing a changing body, undergoing physical exams and treatments, and navigating communication about symptoms - all while possibly feeling isolated and overwhelmed. Without careful translation, each step of the healthcare journey becomes another point where meaning can be lost.
Or a patient with epilepsy and autism, who has psychiatric symptoms interictally. Understanding and treating this can be difficult. Is it the autism we see, is it a primary psychiatric disease, or is it because of the epilepsy? We need good collaboration between the different specialties to understand this.
Small victories, lasting impact
Working with autistic individuals reshapes us as professionals. It teaches us the power of slowness, the necessity of trust and understanding, and the beauty of small victories. A single step out of isolation, a moment of shared understanding, a willingness to undergo a medical exam - these are monumental achievements.
The path is rarely linear. It winds through setbacks and pauses, but always forward. Standardized protocols often fail here. What’s needed instead is a willingness to tailor, adapt, and sometimes break the rules - just enough to make healing possible.
How not to get lost in translation
Be curious and humble. Assume that what you see may not be what is meant.
Always consider somatic causes, especially when psychiatric symptoms appear atypical or change suddenly. It might not be the only cause, but can cause big distress that worsens the psychiatric illness.
Create predictability. Use the “Seven W’s” when you prepare for something: What? Why? Who? Where? How? How long? When?
Adapt the sensory environment. Ask directly: “What do you need to get through this?”
Honor unconventional communication. Accept writing, drawing, or silence as legitimate forms of expression.
Involve families, they can help you to translate, but never forget to seek the patient’s own voice.
Work across disciplines. Psychiatrists can and should be the bridge between worlds.
Conclusion: listening between the lines
When the body and mind speak in different dialects, our job is not merely to diagnose but to interpret. Autistic individuals are at constant risk of being misunderstood - by society, by healthcare systems, and even by those of us with the best intentions.
But if we listen closely, move slowly, and work collaboratively, we can begin to understand what’s really being said. And in doing so, we ensure that our patients are not just seen - but heard, respected, and ultimately helped. □
