Distress Language: How to Tune into What Your Child Can’t Say – Laura the Neurodivergent Nurse Consulting

12 December 2024• byLaura Hellfeld

A Collaborative blog by Tanya Valentin & Laura Hellfeld

Has your neurodivergent child ever said things like, “I hate you,” “I hate myself,” “I wish you would die,” or “I want to die” during a meltdown?

Or perhaps they make unintelligible sounds, repeat the same words, cry, laugh, or say things that seem ‘inappropriate’ when they’re dysregulated?

These are examples of limbic utterances—automatic, instinctive, or emotional vocal expressions that occur when someone is experiencing extreme emotional dysregulation or overwhelm.

This type of communication is involuntary and reflexive, often emerging during moments of stress, sensory overload, or emotional distress. It can feel hurtful, shocking, or even terrifying to hear, but it’s usually not deliberate. Instead, these vocalisations bypass the rational, language-centred parts of the brain because the child or teen has entered survival mode.

Limbic utterances aren’t always words. They might include sighs, gasps, laughs, groans, cries, echolalia, or repeated phrases (also known as scripting). During intense dysregulation, your child or teen may use ‘rude’ or ‘inappropriate’ language or repeat alarming words and phrases, which can be deeply upsetting for parents to witness.

So, why do these utterances happen, and how can parents, caregivers, and professionals support neurodivergent children and teens during these moments?

Neuroception and Survival Responses

To fully understand what’s happening for our young people in these moments, we need to look beyond their behaviour and explore what’s occurring in their nervous system.

Behaviour is just the surface—like a ‘symptom’—of deeper processes happening inside.

According to Stephen Porges’ Polyvagal Theory (Polyvagal Institute), the brain is connected to the body and its major organs through the vagus nerve. Our neuroception—the brain’s ability to sense safety or danger—scans the environment approximately four times per second. This process collects information from the body and sends it to the brain via the vagus nerve.

When we feel safe, we operate in the Ventral Vagal state, where we feel calm, connected, and social. But when the body perceives a threat, it responds in one of three ways:

Hyperarousal (Sympathetic Nervous System): Fight or flight, which may look like meltdowns or running away (elopement).
Immobilization (Parasympathetic Dorsal Vagal): Freeze or shutdown.

Distress language often emerges when the body enters a hyperarousal state, specifically in the fight response.

What may appear as intentional rudeness is usually a reaction driven by anxiety and a sense of danger or feeling unsafe. These behaviours are typically influenced by areas of the brain like the limbic system, which governs instinctive and emotional responses, rather than the parts of the brain responsible for conscious, deliberate actions.

A Quick Look at the Limbic System or the ‘Emotional Nervous System’

What is the Limbic System?

The Limbic System refers to multiple brain structures deep in the brain that are interconnected to regulate a number of behaviours and emotions. It is one of the oldest structures in the brain and is partly responsible for instincts we have such as caring for our children, eating when hungry and drinking when thirsty.

It is also a piece of our automatic responses to threats or stressors. It plays a central role in processing emotions, particularly fear, and initiating the body’s rapid responses to perceived danger. Here’s how the key structures of the limbic system contribute:

The 4 Main Structures of the Limbic System

Amygdala: Has a major role in emotional responses, especially of fear, anxiety, rage and happiness. It is crucial for detecting threats and triggering a fear response. When a threat is perceived, it rapidly evaluates sensory information and activates the hypothalamus to initiate the fight-or-flight response via the autonomic nervous system. The amygdala also communicates with other brain areas to create a heightened state of vigilance and emotional reactions.

Hypothalamus: The hypothalamus is often referred to as ‘the hub’ for activating the sympathetic nervous system, which leads to physiological changes like increased heart rate, rapid breathing, and pupil dilation which all prepare the body for action.

Hippocampus: This structure is involved by providing the context to the threat by bringing in memories and spatial information. It helps differentiate whether a situation is genuinely dangerous based on past experiences.

Thalamus: relays sensory information (besides smell) from the body to the brain to be interpreted and involved in alertness, modulates pain and helps us to decide what details we should pay attention to.

The Main Functions of the Limbic System

As you can see, the limbic system has a lot of responsibilities and is highly involved in managing our memories, and emotions and keeping us motivated and simulated. These responses are often automatic because they bypass higher-order processing in the cortex (outer part of the brain involved in logic, reasoning and problem solving) and create split-second reactions.

Understanding the neurobiology and vulnerabilities of neurodivergent young people and their families

One of the biggest misconceptions about neurodivergent people is that they are unempathetic, uncaring and rude.

These damaging and stereotypical perspectives stem from a history of misunderstanding neurodivergent people but also from a cultural and parenting worldview that is only now starting to understand the true drivers behind our outward behaviours.

As our insights into how the brain and nervous system work we are developing more understanding into behaviours and why they happen. However, this is still in its infancy. We learned the majority of what we know about neuroscience in general in the last 30 years and our understanding of how neurodivergent brains and nervous systems is much younger than that.

When working with neurodiverse families it is important to take into account the many complex and nuanced layers of what it means to be a neurodivergent human being.

Neurodivergent individuals often perceive and communicate in ways that are complex and unique. It’s crucial to recognise that what causes trauma for a neurodivergent person can differ significantly from what is considered traumatic for a neurotypical individual.

These unique traumatic experiences, combined with neurodivergent wiring, can condition the nervous system to view the world as inherently threatening. This heightened sensitivity to perceived danger contributes to the prevalence of mental health challenges.

In fact, anxiety and depression are some of the most common co-occurring conditions seen in Autistic, ADHD, and PDA individuals. Understanding these dynamics is essential to providing effective support.

How We Both See This Show Up in Our Work

Tanya Valentin, Neuro-Affirming Family Coach

Tanya is a family coach specialising in supporting parents of Autistic, ADHD, and AuDHD children and teens. She focuses on empowering families to collaborate in creating a lifestyle that honours their unique needs and values. Tanya is particularly passionate about guiding parents through the burnout recovery process, helping them understand their children’s challenges while fostering a compassionate, low-demand environment for healing and growth.

My work focuses on supporting parents as their children or teens navigate the recovery process from burnout. During burnout, children’s tolerance for even small demands can diminish drastically, leading to frequent meltdowns, outbursts, and distress signals.

In the acute stages of burnout, when distress is highest and capacity is lowest, non-verbal vocalizations such as crying, screaming, and moaning are common. These expressions signal an overwhelmed state and reflect the brain’s activation of the fight-or-flight response, where verbal communication becomes too challenging.

It is also common for young people in burnout to say things like, “I hate you, go away!”, “I wish you would die!” or “I want to die!”.

This can be distressing for any parent to hear. However, threats toward self or others often indicate desperation or an attempt to regain control in a situation where the child feels powerless. These behaviours are rarely about intent but rather a signal that the child is in significant distress.

Both are signs of the nervous system being overwhelmed and energy reserves being depleted. They highlight a need for reducing demands, creating safety, and offering empathetic support.

Supporting a child in burnout who uses distress language requires prioritizing safety, empathy, and a calm environment. This includes safeguarding the space by removing potential hazards as well as minimizing sensory and emotional triggers.

A low-demand, non-threatening home environment allows your child to express themselves without added stress. Distress language and non-verbal vocalisations often signal an overwhelmed state; responding with patience rather than pressure helps your child feel safe.

Laura Hellfeld, Neurodivergent Nurse Consulting

Laura is an independent Nurse & Sleep Consultant whose work largely centres on supporting people with self-care and accepting internal demands. Self-care and internal demands like sleep, eating, hygiene and toileting.

When supporting parents and carers, it’s common for Laura to hear them share that their young people often respond to self-care tasks with examples like below…

‘UGH!’
Deep sighs
‘Gross, I hate this’
Eye rolls
‘Eff THIS!’
Stomping
‘What a waste of MY TIME!’
Gives the middle finger
Throws something to the ground
‘I hate you’ poking at food

It’s natural to feel frustrated or hurt when your young person responds to a meal you’ve prepared or a reminder about showering with these kinds of behaviour. After all, you’ve spent your time and energy trying to support them, and their reaction can feel personal.

These moments can be challenging, but they often reflect your child’s needs, emotions, or sensory experiences rather than a rejection of your care.

In particular, these behaviours may be examples of limbic utterances. These might be the unconscious, automatic responses to the pressure of accepting these self-care demands. It might be the young person’s way of feeling more in control of the situation.

Understanding this can help shift the focus from frustration to curiosity and compassion, creating opportunities for connection and problem-solving.

Connecting Limbic Utterances to My Own Experiences

I’ve spoken previously about my personal challenges with sleep and eating through the years and have found that one of my accommodations to accepting this self-care is acknowledging the frustration that bubbles up in me and needs to get out. For me, this frustration is now usually an automatic deep sigh with an internal dialogue of ‘ok, fine’. I, like so many young people, might just need to throw my head back and be like ‘Argh’ when I realize that I really could do with some fluids.

I’m coming to understand that I need to work alongside the automatic responses of my nervous system rather than trying to stop it.

What Can Help?

Validate and Acknowledge

Respond with empathy: “I can see this feels hard for you right now.” or “You’re right, this is pants.”
Acknowledge their perspective without judgment
Reassure them them that their feelings and reactions are valid

Adapt the Environment

Modify the setting to reduce potential stressors and sensory demands (e.g., noise, bright lights)
Offer tools for sensory regulation, like noise-cancelling headphones, fidget toys or weighted blankets
Simplify tasks or break them into smaller, manageable steps
Safeguard the environment and minimise the risk of a young person being able to seriously harm themselves (or others) during times of extreme stress

Create Time for Breaks, Downtime and Self-led Time

Breaks and downtime give the nervous system a chance to regulate and recover from overstimulation
Unstructured time allows the brain to process emotions and experiences, reducing stress

Present Self-Care as Low-Demand Opportunities

Strew resources needed for self-care versus directly stating to your young person to complete the task
- Ie. Place a cup with fluids next to them while they play a video game versus telling them to transfer out of the room to go find a drink
Use declarative language to provide information and context about the self-care task versus using language that could be perceived as a demand
- Ie. Statements like ‘I can turn the water on in the shower’ versus ‘go take a shower’ or ‘I’ve put your shoes next to the door as I see it’s 8.30 am’ versus ‘go put your shoes on.’

Reconsider Manners

These limbic utterances are a response to stress, not a lack of respect or manners. When stress takes over, their brain prioritises survival over social niceties. It’s a signal that they need support, not correction—so toss out the manners book for now and focus on helping them feel safe and understood.

Empowering Self-Awareness

Begin guiding your young person to understand themselves over time. These limbic utterances may be part of how your young person responds to threat, stress or demands and therefore having this explained to them is a life skill. With time, they may begin to recognise their own triggers and responses and better be able to collaborate on supports.

Create Opportunities for Your Own Self-Care