"They Said It Was Just the Eating Disorder" — Why So Many Families Feel Unheard

You have sat across from professionals — therapists, dietitians, treatment teams — and tried to explain that something else is going on. That your loved one has always experienced the world a little differently. That the eating disorder feels like part of a bigger picture you cannot quite name yet.

And you have been told, more than once: "Let's just focus on the eating disorder for now."

If that is your experience, you are not imagining it. And you are not alone.

Two complex conditions, one person, and very little joined-up support

The overlap between autism and eating disorders is significant, and still widely underrecognised. Research suggests that between 8% and 34% of people with anorexia may also be autistic (Cobbaert et al., 2024). In residential treatment settings, the figure appears to be higher still.

Yet families consistently report the same experience. Professionals who specialise in eating disorders often have little training in autism. Professionals who work in autism services often have little grounding in eating disorders. The person caught between the two falls through the gap.

This is not about individual competence. These are two specialisms that are often trained, commissioned and funded separately — which leaves families doing the work of connecting them, usually without anyone telling them that is what is happening.

(New to this overlap? We have written a plain-language introduction: What Is Neurodivergence — And What Does It Have to Do With Food?)

What it costs when the fuller picture is missed

When autism goes unrecognised alongside an eating disorder, the consequences are real and compounding.

Treatment that does not account for a sensitive nervous system can feel overwhelming rather than containing. Expectations that work well for neurotypical patients may be genuinely inaccessible for someone who is autistic — a busy dining room, a fixed schedule, an instruction to tune into hunger signals that do not arrive reliably.

Progress stalls. Not because the person is not trying, but because the environment was not designed for how their brain works.

Families are left feeling dismissed. Their loved one is left feeling like they are failing at something everyone else manages. And the revolving door of treatment — discharged, relapsed, admitted again — keeps turning.

"When they try to get help for autism, no one understands eating disorders. When they try to get help for eating disorders, no one considers autism. It feels like a constant revolving door."

The part nobody asks about: what this costs caregivers

There is a version of this conversation that stops at the person who is unwell. It should not.

In a survey of 439 parents supporting a child through an eating disorder, 96% reported worse than normal psychological health. More than half — 51% — said they would have liked more support for their own distress and did not receive it (Wilksch, 2023).

Not because anyone refused. Because that support was never built.

The same body of research points to something else worth knowing. Parental self-efficacy — a caregiver's confidence in their own ability to help — is linked with reductions in a young person's eating disorder symptoms, and in co-occurring depression and anxiety (Wilksch, 2023).

Which means supporting you is not separate from supporting them. It is part of the same work.

You hold information nobody else in the room has

There is one thing a caregiver can do that no professional can, and almost nobody tells them it is their job.

A treatment team meets your loved one for the first time in the middle of an eating disorder. They cannot tell which preferences arrived with the illness and which have been there since childhood. You can.

Eating the same meal every day. One specific plate. Needing to eat alone. Taking much longer than everyone else. Finding certain textures unbearable.

If a preference came with the eating disorder, it may be something to work on. If it predates the eating disorder, it is part of who your loved one is — and treating it as a symptom to be removed makes everything harder.

So say it explicitly, and say it early: "She has eaten off the same plate since she was four. That is not the eating disorder."

Offer it as clinical history, because that is exactly what it is.

What actually helps

What families need is rarely more appointments. It is being genuinely understood — by people who can hold both pictures at once, and who do not treat difficulty as evidence that someone is not trying hard enough.

It also means accommodations being understood correctly. Safe foods, predictable routines, sensory adjustments and control over the eating environment are not concessions on the way to "normal eating." For a neurodivergent person they are often what makes eating possible at all. Accommodations are not privileges. They are equalisers.

And when the right support is in place — when treatment is adapted, and when the family is informed and equipped — things change. We see it in the work we do every day.

Support built for the people doing the supporting

This is why we created First Aid for Caregivers.

Six weeks, neurodivergence-affirming throughout, led by Deirdre Reddan alongside another mother who has walked this path herself. Short, bite-sized videos and resources you can watch when you have ten minutes. A group coaching call where you can feel supported by others who understand.

It is built for people who are new to this and need something now.

"I've learned more from the first two weeks of this programme than 8 months working with services and supporting my daughter."

"It is so good to feel less alone — and to know that there is HOPE."

Find out more and book your place → First Aid for Caregivers. Not ready for a programme? Start here → What Actually Helps: A Starting Point for Caregivers is a free guide covering six things: what caregivers are actually carrying, the four kinds of support you need and the one you keep being offered, why accommodations are access rather than concessions, the eight places where eating can break down, the mealtime rules worth questioning, and what to ask a service for.

It takes about fifteen minutes to read, and it is yours to keep.

Frequently asked questions

Can someone be autistic and have an eating disorder at the same time?

Yes, and it is more common than most services account for. Research suggests that between 8% and 34% of people with anorexia may also be autistic. The two are frequently entangled, which is part of why they are so often missed together.

Does being autistic cause an eating disorder?

No. Autism does not cause an eating disorder. But some autistic experiences — sensory sensitivity, difficulty sensing hunger and fullness, a strong need for predictability, and the exhaustion of masking — can shape a person's relationship with food and can influence how an eating disorder develops and persists.

Why was my loved one's autism not identified sooner?

Many autistic people, particularly women and girls, are identified late or not at all. Masking — the effort of appearing to cope — is often highly effective and highly costly. Traits can also be read as symptoms of the eating disorder rather than as something that predates it, which is why a caregiver's account of what someone was like before matters so much.

Should we treat the eating disorder first and the autism afterwards?

Sequencing them this way is common, and it is often where families feel most unheard. Eating disorder treatment that does not account for sensory needs, interoceptive differences and a need for predictability can be inaccessible rather than merely difficult. Adapting the approach is usually more effective than postponing it.

Are safe foods and routines something we should be trying to reduce?

Not necessarily. For a neurodivergent person, sameness and predictability are frequently doing regulatory work rather than avoidant work. Where a preference predates the eating disorder, it is usually better understood as an access need than as a symptom.

What support is available for me as a caregiver?

Very little is offered routinely, which is precisely the gap this article describes. CEDAR runs First Aid for Caregivers, a six-week neurodivergence-affirming programme for parents, partners, family members and friends. You can find current dates and details on our website.

Whether you're looking for support or just have questions, you don't have to figure it out alone. CEDAR — Community of Eating Disorders Awareness and Recovery

References

Cobbaert, L., Millichamp, A. R., Elwyn, R., Silverstein, S., Schweizer, K., Thomas, E., & Miskovic-Wheatley, J. (2024). Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative review. Journal of Eating Disorders, 12(1), 187. https://doi.org/10.1186/s40337-024-01126-5

Wilksch, S. M. (2023). Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder. International Journal of Eating Disorders, 56(7), 1275–1285. https://doi.org/10.1002/eat.23938