Before You Call It “Behavior,” Ask What Changed

Wajdi Akef Fakhoury, LMFT 148333

Understanding distress in neurodivergent people with complex support needs

A person who usually looks forward to their day program begins refusing to leave home.

Someone who has slept through the night for years starts waking at 3:00 a.m.

A person who communicates readily becomes quieter, more repetitive, or more agitated.

They stop participating in familiar activities. They seek constant reassurance. They push people away. They begin hitting themselves, tearing clothing, or trying to leave.

The change is visible.

What it means is not.

Too often, the first description becomes the final explanation:

They are having behaviors.

Once that happens, attention moves quickly toward stopping what can be seen. A behavior plan is revised. Consequences are discussed. Staff are reminded to remain consistent. The person is prompted to use coping skills.

But the most important clinical question may never be asked: What changed?

Behavior is observable. Meaning is inferred.

A behavior can communicate distress, regulate an internal state, create distance from an overwhelming demand, seek predictability, express pain, restore a sense of control, or solve a problem that other people have not yet recognized.

It can also have more than one explanation.

A person may leave a crowded room because the sound is painful, because they do not understand what is expected, because they recognize early signs of overload, or because something frightening previously happened in a similar setting.

Someone may repeatedly ask when a caregiver is returning because they feel anxious, because time is difficult to represent internally, because the answer keeps changing, or because the information has not been provided in a form they can reliably access.

A person may stop speaking because they are angry.

They may also be exhausted, frightened, overwhelmed, depressed, in pain, unable to organize language quickly enough, or approaching shutdown.

The visible behavior matters.

But its appearance alone rarely tells us enough.

“Behavior is communication” is useful -- and incomplete

The phrase behavior is communication has helped many caregivers and professionals move away from punishment and toward curiosity.

But it can also become another slogan that oversimplifies the person.

Not every behavior is a deliberate message. A person does not necessarily hit, flee, freeze, repeat themselves, or lose access to language because they have consciously selected that behavior to communicate a need.

Sometimes behavior communicates in the same way a fever communicates: it tells us that something is happening without telling us exactly what it is.

The task is not to assign an inspiring meaning to every action.

It is to investigate.

Neurodivergence does not explain every change

A person’s autism, ADHD, intellectual disability, communication profile, or other neurodevelopmental difference may shape how they experience and express distress.

It should not become the explanation for everything they do.

When a disability or diagnosis becomes so prominent that clinicians attribute new psychiatric, medical, or behavioral symptoms to it, other conditions can be missed. This is often called diagnostic overshadowing.

A recent change in functioning should never be dismissed as “just the autism,” “part of the disability,” or “attention-seeking” without an adequate assessment.

Withdrawal may be labeled refusal when the person is depressed, grieving, frightened, exhausted, or in pain.

Agitation may be treated as a behavior problem without examining illness, constipation, medication effects, disrupted sleep, sensory overload, or a major change in the person’s life.

A loss of previously established skills may be blamed on neurodivergence even though a lifelong neurodevelopmental condition does not adequately explain a sudden departure from the person’s own baseline.

Research suggests that intellectual disability can still affect clinicians’ diagnostic impressions, including the accuracy with which co-occurring mental-health conditions are identified. Neurodevelopmentally informed care does not mean interpreting everything through neurodivergence. It means understanding neurodivergence well enough to recognize when something else may be happening.

Begin with the person’s baseline

A useful assessment starts by asking how the person ordinarily communicates, participates, sleeps, eats, moves, relates, and manages familiar routines.

Then it asks:

What is different now?

Has the frequency changed?

Has the intensity changed?

Is the concern appearing in every setting or only one?

Does it occur with particular people, tasks, environments, times of day, or transitions?

What happens immediately before it?

How do other people respond?

What happens afterward?

A person’s baseline is especially important when they cannot easily describe internal changes through speech.

A shift in movement, facial expression, sleep, appetite, communication, self-care, social interest, or tolerance for ordinary demands may be the clearest available sign that something is wrong.

Clinical guidance recommends assessing the person’s physical and mental health, communication, sensory profile, medication effects, recent life events, trauma history, relationships, routines, physical environment, and the responses of the people supporting them—not merely describing the behavior itself.

Pain does not always look like pain

When people think about pain, they often expect someone to identify where it hurts, rate its intensity, and ask for help.

Not everyone can do that reliably.

Pain may appear as reduced activity, irritability, self-injury, aggression, withdrawal, changes in sleep, changes in movement, refusal of familiar tasks, or an unusual need for reassurance.

These behaviors do not prove that pain is present. They do mean that physical health should remain part of the assessment.

Research involving autistic people and people with intellectual disability has documented highly individualized verbal and nonverbal expressions of pain.

Communication differences can contribute to pain being overlooked or misinterpreted, particularly when observers expect one conventional presentation.

A behavior plan should not substitute for a medical evaluation when there has been a meaningful change from baseline.

The environment may be participating in the problem

Sometimes the question is framed as: Why is this person behaving this way?

A more complete question is: What is happening between this person and the environment around them?

Consider what the person may be managing:

• Several people speaking at once.

• Instructions containing multiple hidden steps.

• Expectations that change depending on the staff member.

• Unpredictable transitions.

• Fluorescent lighting, crowded rooms, or persistent background noise.

• Long periods without meaningful activity.

• A communication system that is unavailable when it is needed most.

• A request for space that is repeatedly interpreted as avoidance.

• Correction delivered faster than the person can process.

• A support plan designed without their participation.

• People discussing them as though they are not present.

• A setting in which they must escalate before anyone responds.

The environment does not explain every concern.

But it is never clinically neutral.

Guidance on behavior that challenges specifically recommends examining sensory conditions, communication, staff and caregiver responses, restrictive or disrespectful environments, changes in support, excessive or insufficient stimulation, and whether daily life promotes engagement and meaningful choice.

Sometimes the most important intervention is not another coping skill.

• It is a clearer expectation.

• A slower pace.

• A medical appointment.

• A predictable transition.

• A communication support.

• A repaired relationship.

• A change in staffing.

• A quieter space.

• A demand divided into usable steps.

• A system that begins responding before distress reaches its most visible form.

Distress can change communication

A person may communicate effectively when regulated and lose access to those same abilities when overwhelmed.

Speech may become slower, faster, repetitive, less precise, or temporarily unavailable. The person may rely more heavily on gestures, typing, familiar phrases, movement, facial expression, or observable behavior.

This does not necessarily mean that they are refusing to communicate.

It may mean that the form of communication available to them has changed.

A recent review of autistic communication during distress found that people may communicate through spoken and non-spoken methods, including typing, gestures, facial expressions, screaming, hitting, and other observable behaviors. Supportive environments and communication aids relevant to the situation may make communication more accessible.

The appropriate question is not: Why won’t they use their words?

It is: What communication is available to this person right now, and what are we doing that makes it easier or harder to access?

Include the person—even when communication is complex

Neurodivergent people should not disappear from their own assessment because other people communicate more quickly.

Caregivers, partners, family members, teachers, direct-support professionals, and clinicians may hold essential information. They may recognize changes that no single provider could see.

But consultation should not become a process in which everyone speaks about the person while no one meaningfully communicates with them.

Participation may require:

• Direct rather than abstract questions.

• Written or visual options.

• Additional processing time.

• Alternative or augmentative communication.

• Questions asked over several meetings.

• A familiar person present with consent.

• Information gathered in a setting where the person communicates more comfortably.

• Permission to answer later or revise an earlier response.

• Attention to behavior and changes without assuming that observers already know what those changes mean.

The person’s communication may not resemble a conventional clinical interview.

It is still clinical evidence.

Separate what you observed from what you concluded

A useful team discussion distinguishes observation from interpretation.

• Observation:“She asked when her mother was coming eleven times in thirty minutes.”

• Interpretation:“She was being attention-seeking.”

• Observation:“He remained under his blanket after staff asked him to prepare for work.”

• Interpretation:“He was refusing because he did not want to be held accountable.”

• Observation:“She hit her head after the transportation schedule changed.”

• Interpretation:“She uses aggression to get her way.”

Interpretations may eventually prove partly correct.

But when they are documented as facts, they shape every response that follows.

A better formulation might ask:

• Did the person understand the change?

• How was the information communicated?

• What did they expect would happen?

• Was there enough time to process?

• Were there signs of pain, illness, fatigue, or sensory overload?

• Did something similar happen previously?

• What did the person attempt before the visible escalation?

• How did supporters respond?

• Did the response reduce distress—or add another demand?

Precision protects the person from being defined by someone else’s first impression.

A better understanding should produce a different response

The purpose of assessment is not to create an elegant explanation that changes nothing.

A useful formulation alters what happens next.

When the concern is partly related to pain, the response includes medical assessment and a more accessible way to communicate physical discomfort.

When uncertainty is driving repeated questions, the response may include reliable information that the person can revisit independently.

When demands exceed available executive-functioning capacity, the response may involve defining the starting point, externalizing the sequence, reducing simultaneous instructions, and planning for interruptions.

When sensory strain is contributing, the environment may need modification.

When trauma is relevant, treatment may need adaptation around safety, trust, pacing, consent, and the person’s communication and developmental profile.

When the support system is contributing to the problem, the intervention cannot focus exclusively on changing the individual.

Ask more than “How do we stop this?”

There are situations in which behavior creates genuine risk.

Aggression, self-injury, elopement, severe withdrawal, or rapid loss of functioning should not be romanticized or treated as though understanding eliminates the need for safety.

The person may need clear boundaries, immediate protection, medical care, crisis support, or a more intensive level of service.

Compassion does not require passivity.

But safety and understanding are not opposing goals.

The response can protect people while still asking what produced the crisis, what the person was communicating, what was missed, and how the environment may need to change.

The most useful questions are often:

• What changed from the person’s baseline?

• What happened before the visible concern?

• What physical-health factors have been assessed?

• What mental-health changes should be considered?

• What has changed in the person’s relationships, routines, or environment?

• What sensory and communication demands are present?

• What might the person be attempting to communicate, regulate, avoid, seek, or solve?

• How are other people responding?

• What assumptions have been made without evidence?

• What does the person say—or show—about what is happening?

• What would improve the person’s quality of life, not merely make the behavior less visible?

The behavior may be the final chapter—not the whole story

By the time distress becomes impossible to ignore, the person may already have been managing pain, fear, uncertainty, overload, grief, communication failure, or impossible expectations for hours, weeks, or months.

Stopping the visible behavior may make the room quieter.

It does not necessarily make the person safer.

It does not tell us whether the underlying need was understood.

And it does not tell us whether the same conditions remain in place, waiting to produce the same result again.

Before calling someone oppositional, manipulative, attention-seeking, unmotivated, or noncompliant, pause.

Describe what actually happened.

Look for what changed.

Ask what the person’s body, communication, relationships, and environment may be telling you.

The behavior deserves a response.

The person deserves to be understood.

About Samar Neurodivergent Therapy Center

Samar Neurodivergent Therapy Center provides adapted outpatient psychotherapy and clinical consultation for neurodivergent adolescents and adults, couples, families, caregivers, and systems of support.

Our work considers neurodevelopment, mental health, trauma, communication, sensory processing, executive functioning, relationships, and the environments in which people are expected to function.

Services are available in person in Pasadena and by secure telehealth throughout California.

References

Dell’Armo, K., & Tassé, M. J. (2025). How intellectual disability may bias psychologists’ clinical impressions: An examination of diagnostic overshadowing. Psychological Assessment, 37(4), 161–171.

Johnson, E., van Zijl, K., & Kuyler, A. (2023). Pain communication in children with autism spectrum disorder: A scoping review. Paediatric and Neonatal Pain, 5(4), 127–141.

National Institute for Health and Care Excellence. (2015). Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges.

Oldenburg, K., Gibbons, T., Welch, C., Tint, A., & Albin, M. (2026). Describing the communication of autistic people during experiences of distress: A scoping review. Autism, 30(4), 884–900.

Swanlund, L., & Steinhart, B. (2025). The phenomenon of pain in adults with intellectual disability: A qualitative systematic review. Journal of Applied Research in Intellectual Disabilities.