Launching a New Awareness Campaign with Macy
TCC Launches New ARFID Awareness Campaign Across North Wales
TCC is proud to be working alongside Macy and her family to launch a new awareness campaign focused on Avoidant/Restrictive Food Intake Disorder (ARFID), autism-informed care, and the urgent need for earlier understanding and support across Wales.
After meeting with Macy’s family and hearing first-hand about the reality of living with severe ARFID, it became clear that more conversations need to happen around this often-misunderstood eating disorder.
This campaign is not about blame. It is about awareness, education, lived experience, and encouraging positive change.
What is ARFID?
Avoidant/Restrictive Food Intake Disorder (ARFID) is a recognised eating disorder that can severely affect physical health, emotional wellbeing, nutrition, daily life, and safety.
Unlike anorexia, ARFID is not driven by body image concerns or a desire to lose weight. For many people, especially autistic individuals, ARFID can involve:
- extreme sensory sensitivities,
- intense fear around food,
- contamination fears,
- panic around eating,
- difficulty with textures, smells or appearance,
- and overwhelming distress linked to eating environments.
ARFID can lead to serious malnutrition, hospital admissions, tube feeding, social isolation, anxiety, educational disruption, and long-term trauma if support is delayed.
Awareness of ARFID has increased significantly in recent years across the UK, but many individuals and families still report difficulties accessing consistent understanding and specialist support.
Macy’s Story
The following reflections are shared in Macy’s own words and experiences.
Macy is autistic and non-speaking. Over time, ARFID affected every part of her life physically, emotionally, socially, and psychologically.
She describes how food gradually became associated with fear and distress rather than safety, and how everyday activities many people take for granted slowly became overwhelming or impossible.
Macy shared:
“Food became fear, eating became survival, and my life became controlled by sensory distress, medical risk, and exhaustion.”
She also spoke openly about how difficult it can be when people misunderstand ARFID as “just picky eating” rather than recognising the seriousness of the condition.
For Macy, one of the most painful experiences was feeling physically unwell while also feeling misunderstood.
She explained:
“What changed was realising that ARFID was never the thing destroying me most — it was the lack of understanding around it.”
Why This Campaign Matters
This campaign aims to:
- increase understanding of ARFID,
- highlight the experiences of autistic and non-speaking young people,
- encourage earlier intervention,
- support families feeling isolated,
- and promote more joined-up approaches across healthcare, education, and mental health services.
The campaign also hopes to encourage conversations around:
- sensory-informed care,
- autism-aware support,
- communication differences,
- and the emotional impact ARFID can have on individuals and families.
What Change Could Look Like
Macy hopes this campaign can help encourage:
- better awareness and training around ARFID,
- earlier recognition before crisis point,
- more coordinated support between services,
- improved understanding of autism and sensory distress,
- and greater inclusion of lived experience in future service development.
TCC believes lived experience matters and that listening to young people and families is essential in shaping compassionate, effective support.
A Message from Macy
“I stopped trying to make my story sound comfortable for people because there is nothing comfortable about watching young people become critically unwell while still feeling misunderstood.”
“I want Wrexham and North-East Wales to be places where young people with ARFID are understood early, supported safely, and never made to feel like they have to become critically unwell before deserving help.”
This Is Only the Beginning
This campaign marks the beginning of ongoing awareness work with Macy and others affected by ARFID across Wales.
Over the coming months, the campaign will share:
- lived experiences,
- educational information,
- awareness resources,
- opportunities for discussion,
- and ways organisations and professionals can better understand ARFID.
If sharing Macy’s story helps even one young person or family feel less alone, then this campaign has already started making a difference.
Support & Resources
For more information about ARFID:
Follow Macy’s awareness work:
Facebook: @ARFIDandmeUK
Instagram: @arfid_and_me_
If you would like to support this campaign, please email office@tcc-wales.org.uk
