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PDA and eating disorders

For PDAers-autistic people with a PDA profile-eating can present unique challenges.

There are challenges brought about by needing control, feeling anxiety, sensory sensitivities, and interoception (the ability to sense internal bodily states). This means that mealtimes can become a battle rather than a source of nourishment or pleasure. When a PDAer also experiences an eating disorder, these complexities can be amplified, making traditional treatment approaches difficult to tolerate, and at times, counterproductive.

This guide explores why PDAers may struggle within conventional eating disorder treatments and highlights the importance of person-centred, flexible support. Keira’s story, shared later, offers a real-world example of how PDA-friendly adaptations can help bring meaningful recovery.

Why PDAers may struggle with eating disorders

At its heart, PDA is driven by anxiety and a need to maintain autonomy. Traditional eating disorder treatments often overlook this important point and rely on structured routines, fixed mealtimes, and strict dietary expectations. While these approaches might benefit some people, they can be overwhelming for PDAers. Understanding why they can cause distress is the first step in creating more supportive environments.

Traditional treatment approaches

In typical eating disorder treatment settings, routines are structured to restore regular eating patterns and reconnect individuals with feelings of hunger and fullness. This usually involves:

  • Strict meal plans-three meals and three snacks daily to encourage consistent intake and regulate hunger cues.
  • Fixed dietary expectations-designed to support nutritional balance, these plans often leave little room for individual sensory sensitivities or food preferences.
  • Rules around mealtimes-enforcing behaviours like sitting at the table, maintaining specific posture, or engaging in certain types of social interaction.

While they mean well, these structured approaches can trigger heightened anxiety, loss of autonomy, and sensory overload in PDAers.

Demand avoidance

For PDAers, even simple requests can feel like demands, triggering a stress response. The rigid nature of traditional eating disorder treatments, with their expectations around when, where, and how to eat, increases this sense of pressure. The more demands placed on them, whether direct or indirect, the more likely a PDAer is to resist or shut down.

Control and autonomy

Eating is deeply tied to control. For PDAers, maintaining autonomy over food choices, mealtime routines, and even the environment in which they eat is vital. Traditional treatment often removes these choices, which can leave PDAers feeling powerless. Offering choices-what to eat, when to eat, where to sit-restores a sense of control that is crucial for engagement.

Sensory sensitivities

Many PDAers experience heightened sensory sensitivities due to their autism. The taste, texture, smell, and appearance of food can all be potential sources of distress. Forcing a PDAer to eat something that triggers sensory discomfort can increase their anxiety and lead to more resistance.

Interoception differences

Interoception refers to the ability to sense internal bodily states-like hunger, thirst, or feeling full. PDAers often experience interoceptive challenges, which can lead to eating too little because they feel full prematurely or overeating due to not recognising fullness. Explaining body signals factually-such as how much food the stomach can hold-can help PDAers engage without perceiving the information as a demand.

Anxiety and past trauma

Healthcare settings can feel demanding and unpleasant, especially for PDAers with previous negative experiences. Multiple interventions, rigid structures, and high-pressure environments often increase anxiety. Trusting healthcare professionals can be difficult when past experiences have felt overwhelming or dismissive. Building trust and prioritising autonomy are essential for engagement and recovery.

Keira’s story: a PDA-friendly approach to recovery

Keira (name changed) struggled with an eating disorder for a decade. Despite numerous attempts, standard treatments failed to support her needs. It wasn’t until her care was adapted to fit her PDA profile that meaningful progress was made.

Building trust from the start

Before Keira’s hospital admission, a person-centred planning process was initiated. Meetings were held with her assistant headteacher and key people from every part of her life. The hospital recognised the need to understand PDA better and sought guidance from Keira’s school, ensuring staff received PDA-specific training.

This whole-team approach meant that from the cleaners to the consultants, everyone understood the importance of reducing demands, respecting autonomy, and allowing trust to develop at Keira’s pace.

Reducing perceived demands

Staff communicated indirectly, framing nutritional goals in ways that connected with Keira’s passions-particularly her love of dance. Instead of focusing on health or weight, conversations centred around strength and stamina, enabling her to pursue what mattered to her.

Flexibility in treatment

Keira had agency within her treatment team. She chose which staff members to work with, what goals to prioritise, and the pace of her recovery. She was an active participant in her care rather than a passive recipient.

Creative engagement

Her interests were used as gateways to therapeutic engagement. Dance and music therapy sessions weren’t framed as treatment but as opportunities for Keira to do what she loved. Even singing-something she enjoyed-was woven into her recovery, teaching her breathing techniques to manage anxiety without feeling like she was in therapy.

Sharon Donaldson, service director at Ellern Mede, reflected on this approach: “It was really important to help the team understand that they needed to tell Keira she had to do things, but in a PDA-friendly way.”

For Keira, the message wasn’t about being healthy-it was about being strong enough to dance. This shift in language made a world of difference.

Lessons from Keira’s journey

Keira’s story illustrates that standard treatments often fail PDAers. A rigid, demand-heavy approach can heighten anxiety and lead to avoidance.

  • Trust and autonomy are key: involving PDAers in their care decisions leads to better engagement. Feeling heard and understood builds the trust needed for recovery.
  • Language matters: framing requests in non-threatening, indirect ways can reduce anxiety. For Keira, focusing on “strength to dance” rather than “being healthy” helped her connect to recovery goals.
  • Flexibility leads to better outcomes: adaptability in protocols, environments, and communication styles allows PDAers to feel safer and more in control.

Moving forward: recovery on their terms

Today, Keira is thriving. She’s completed school, continues to dance, and was accepted into a prestigious dance academy. She now delivers training on PDA and eating disorders, sharing her insights globally to help improve support for others.

Her journey demonstrates that recovery is possible when approaches are flexible, empathetic, and PDA-friendly.

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