Life With ARFID And Neurodivergence: Navigating The Waves In The Dark
What is Avoidant/ Restrictive Food Intake Disorder (ARFID)?
ARFID is a serious eating disorder characterised by avoidance and aversion to food and eating. Unlike other eating disorders it is not driven by concerns about weight and/or body image.
Avoidance occurs due to internalised fear of particular foods, textures, smells and/or tastes, often linked to sensory sensitivities.
Aversion can stem from traumatic or fear-based experiences, such as fear of choking, vomiting, or allergic reactions.
Restriction is frequently linked to differences in interoception (the ability to notice internal bodily sensations), meaning individuals with ARFID may not recognise hunger cues and require reminders to eat.
This blog aims to validate the challenges and offer practical strategies for both you as a carer and your loved one, particularly when ARFID is combined with neurodivergence.
What is Neurodivergence?
Neurodiversity recognises that there are natural variations in how people think, process information, and interact with the world.
Neurodivergence refers to cognitive differences that diverge from the neurotypical ‘norm’. These variations include those seen in attention deficit hyperactivity disorder (ADHD), autism, and dyslexia. A neurodivergent person may experience heightened sensory sensitivities, have unique learning styles, or process emotions differently. While these differences can present challenges, they also bring strengths such as creativity, intense focus, and deep expertise in areas of interest.
Acknowledging The Challenge
First and foremost, navigating life with both ARFID and neurodivergence is challenging – and acknowledging that is important. Managing both the challenges (and strengths) of ARFID and neurodivergence can cause stress to both the individual and the entire family. At times, there can also be a disconnect, because it can be hard for those with brains that function differently than the ‘norm’ to understand the way neurotypical people think and vice versa.
Like most journeys, it probably started well before you knew you were even on it. I am a fan of quotes, and one quote that I am fond of is from the Lord of the Rings when Bilbo Baggins says:
“It’s a dangerous business, Frodo, going out your door. You step onto the road, and if you don’t keep your feet, there’s no knowing where you might be swept off to.”
It can feel like you’re navigating waves in the dark – uncertain and overwhelming.
The Double Impact
The combination of ARFID and neurodivergence affects every aspect of daily life, particularly around meals. Common challenges include:
- Finding restaurants with safe food options (if eating out is even possible)
- Meal preparation – do you cook multiple different meals in the same night?
- Managing school-related stressors, from lunchbox shaming to school camps. As a side note on school camps, growing up in Canada, they were never even a thing… and that was okay! If needed, get a GP letter to excuse.
- Coping with rigid food preferences – will they eat the same meal for weeks only to suddenly refuse it? Is the texture of the fruit right?
- Navigating social situations like birthday parties or family gatherings where food is involved.
Practical Strategies For Carers
You may receive well-meaning advice from professionals, family and friends. Your loved one may be dismissed as a ‘picky eater’, but ARFID is not a preference – it’s a fear-based response to food. While you need to listen to medically sound advice in the case of malnutrition, I also invite you to listen to your intuition. You know your loved one better than anyone. Here are some evidence-based, compassionate approaches:
- The SAFETY and RAVES Models: These models are structured approaches for supporting individuals to develop positive food relationships. Look into these models for guidance on creating a secure eating environment and expanding food options at a pace that feels manageable
- ‘Fed is best’: Eating anything versus nothing is more important than what a person eats”
- Always have safe foods available
- Avoid judgement and comments on eating
- Respect autonomy and allow agency
- Create a calm and safe environment for eating e.g. minimising sensory distractions, soothing music, dimming lights, reducing noise
- Explore alternative nutrition options
Medical Considerations
Malnutrition can be a serious risk with ARFID. Regular medical check-ups are essential, including regular blood tests and blood pressure laying down and then standing up to check for Orthostatic hypotension. Avoid weight discussions if they are triggering.
Supporting yourself as a carer
Caring for someone with ARFID and neurodivergence can be emotionally and physically exhausting. It’s vital to prioritise your own wellbeing too:
- Acknowledge your feelings. It’s okay to feel frustrated, overwhelmed, or exhausted
- Practice self-compassion. A great resource is here
- Take breaks when you can
- Seek support. Connect with other carers by attending a support group, or book an appointment with a Fill The Gap Counsellor
Place one hand on your heart and the other on your diaphragm. Take a deep breath. Remind yourself that you are doing an incredible job navigating these challenges. Prioritise rest when needed, and remember, you are not alone.
FREE essential access to tailored, online, one-on-one counselling support for carers and young supporters (aged 10-17 years) of those with eating disorders, at any stage of the eating disorder journey, to support your wellbeing as you care for your loved one.
Please contact contact Administrative Assistant Bailey Wightman on 03 9125 5670 or email bailey.wightman@edfa.org.au if you need support accessing the service.
Book a FREE counselling session with Mark
Caring for a loved one with an eating disorder can be overwhelming and challenging, but you don’t have to do it alone.
Mark offers free, online, one-on-one counselling, providing emotional support to carers and young supporters, ensuring they have the skills and strategies to be an effective part of their loved one’s recovery team.
Mark has over 20 years of experience as a counsellor with children, youth and adults in a variety of settings including with carers and people impacted by eating disorders. He is warm and compassionate and uses a trauma-informed, empathetic and non-judgmental approach.
“As someone with lived experience, I have tremendous compassion for carers. I believe all carers and people should be treated with the utmost respect and as an expert into their individual lives. I also believe there is always a way amongst the unlimited possibilities that arise in every moment. There is hope.”
About Eating Disorders Families Australia
Eating Disorders Families Australia (EDFA) is the only national organisation solely for carers and families of those with an eating disorder. EDFA provides support, EDucation, advocacy, and FREE online counselling services and annual membership. EDFA has a private Facebook forum, providing a safe place for eating disorder carers and family members to share experiences, seek advice and assistance, and find hope.