Why Lived Experience Matters in Neurodivergent & ARFID Training

There is a profound difference between understanding ARFID and living alongside it.

ARFID is often taught through diagnostic criteria, food lists, and clinical pathways. Those things are important — but on their own, they are incomplete. Without lived experience, training risks missing the emotional, relational, and sensory reality that families are navigating every single day.

Because ARFID is never just about food.

ARFID Is About Safety, Not Choice

Lived experience makes this unmistakably clear.

Children with ARFID are not being difficult, oppositional, or selective. They are responding to genuine fear — fear rooted in sensory overwhelm, past adverse experiences, physiological responses, or an overactive threat system.

When training lacks lived experience, well-intended strategies can unintentionally increase distress:

• Pressure framed as "encouragement"
  
• Exposure introduced before safety
• Progress measured by intake rather than wellbeing

Families live with the consequences of these missteps long after professionals leave the room.

“This Is Not Your Fault” Matters More Than We Realise

One of the most powerful interventions in ARFID support isn’t clinical — it’s relational.

Parents carry extraordinary guilt. Many are quietly asking themselves:
What did I do wrong for my child to be this scared of food?

Training grounded in lived experience ensures professionals understand how vital it is to say — clearly and repeatedly — that ARFID is not caused by parenting. That simple reassurance can reduce shame, rebuild trust, and open the door to collaboration.

From Compliance to Compassion 

Lived experience challenges the idea that success looks like compliance.

Children may appear to “cope” in structured settings while unravelling at home. Families know that apparent progress can come at the cost of emotional safety. Training informed by lived experience teaches professionals to look beyond what is visible and ask what it costs the child to eat, try, or sit at the table.

It shifts the focus from:

• How do we get them to eat?
• How do we help them feel safe enough to eat?

Why Training Changes When Lived Experience Is Included

Professionals often say:

“I didn’t realise it felt like that.”

That moment is critical.

It’s where ARFID training stops being theoretical and becomes humane. Where curiosity replaces judgement. Where families are seen as partners, not problems.

Final Reflection

Lived experience does not replace clinical knowledge in ARFID training — it completes it.

Without it, training may struggle to capture the emotional and relational realities that shape everyday life with ARFID. With it, learning becomes grounded, responsive, and deeply human.

Because ARFID support doesn’t start with food.

It starts with trust.