FBT: Helpful or Harmful for Autistic People with Eating Disorders?

Family-Based Therapy (FBT), often hailed as the "gold standard" for eating disorder treatment, claims to help families take control of recovery. Unfortunately, this approach can be harmful for autistic people. In this post, Livia shares her lived experience and insights on why FBT can clash with the unique needs of neurodivergent individuals. From issues of autonomy to the oversimplified prioritization of weight gain, we’ll explore how "evidence-based" treatments often overlook neurodivergence.

What is FBT for Eating Disorders?

Family-Based Therapy (FBT) was developed in the 1980s by Christopher Dare and his colleagues at the Maudsley Hospital in London, which is why it’s sometimes called the Maudsley Method or Maudsley Approach. According to the Treatment Manual for Anorexia Nervosa by James Lock and Daniel Le Grange, who popularized FBT is the US, FBT directs parents to take an active and positive role in an effort to help restore their child’s weight, then slowly phase into handing the control back to the child to encourage normal adolescent development. The therapy is structured in three phases:

1. Phase 1 (Weight Restoration): Parents assume responsibility for helping their child eat adequately and restore weight. This phase focuses on physical health and stabilizing eating behaviors under parental supervision.
2. Phase 2 (Returning Control to the Adolescent): As the child begins to make progress (of course, making a GIANT assumption here that even make progress while literally having zero autonomy), the therapy gradually shifts control of eating back to the adolescent. This step supports autonomy while maintaining accountability and safety.
3. Phase 3 (Establishing a Healthy Adolescent Identity): With eating behaviors stabilized (again, totally assuming that they even will stabilize through FBT), the focus moves to supporting normal adolescent development, including building a positive self-image and addressing other developmental needs.

Wow, doesn’t this just all sound like a magical fairytale? Even as I was meticulously researching FBT so I could write this blog – reading about its tenets and how it emerged as an alternative treatment that involved the entire family rather than isolating the patient – I'm reminded of why so many people succumb to what I like to call the "FBT trap.”

I’m obviously not a parent, so I will never claim to know what it’s like to see your child struggling with this horribly paradoxical mental illness. However, I do have lived experienced of anorexia as an autistic person. Plus, many of the parents I've worked with through coaching have shared with me how FBT was presented to them as some kind of magical cure being delivered on a silver platter – so of course they committed. But then where does FBT go wrong, and more specifically, why does it go wrong for autistic and ADHD folks?

FBT Removes the Child's Autonomy

First of all, the overarching idea of FBT is that someone with anorexia is incompetent and incapable of making food decisions for themselves. I mean obviously, duh, that’s why they have anorexia right? So, because the child is “incompetent,” the parents must temporarily take full control over their child’s eating. And when I say full control, I mean hardcore, full control.

As I write in my book Rainbow Girl, I was just 12 years old when I was sat down with my parents in the little family therapy office in Boston to receive the news that would start all of the trauma. On the day I was discharged from residential eating disorder treatment, we were informed that I could no longer make my food again. Instead, my parents were going to do all of my food preparation for me. I wasn’t allowed to come to the grocery store, I wasn’t allowed to be in the kitchen, I wasn’t even allowed to choose between a cookie or a granola bar at snack! Everything – and I mean everything – related to food was completely out of my hands. And this is exactly where the first FBT issue arises when it comes to eating disorders and neurodivergence.

Autism and Pervasive Drive for Autonomy in Eating Disorder Recovery

Autistic people have a heightened need for autonomy. This goes hand in hand with a heightened need for safety. When you’re born into a world in which you feel on a deep soul level that you’re different but can’t quite pin down why, you grow up feeling this constant sense of threat. And when us humans feel threatened – autistic or not – we’re going to find tangible ways to create a sense of safety.

Just imagine being dumped into a vast ocean, cold and endless, with no sense of direction or solid ground. Every wave feels like it could pull you under, and there’s a gnawing fear that something unknown lurks beneath. In this endless stretch of uncertainty, you see a life raft floating nearby. Naturally, you grab onto it, clinging tightly, because it’s the only thing that offers even the slightest sense of safety.

For autistic people, routines and predictability act as that life raft. They give us something steady to hold onto, something we know we can trust, in a world that often feels like that chaotic ocean. This is also why autistic people do the same things in the same ways at the same times. These "rituals" are like life rafts that have kept us safe before, so it only makes sense to continue holding on tightly. Obviously, this is also where the eating disorder creeps in. It’s another life raft, another thing we can rely on when everything around us seems unreliable.

How FBT Makes the Eating Disorder WORSE for Autistic People

If you try to “take control” over the only thing your child feels they can control in this uncontrollable world, can you see why that would evoke resistance? And don’t even get me started on how demand avoidance plays into all of this, which we talk all about in the Autistically ED-Free Academy.

In a nutshell, FBT’s theft of autonomy can cause neurodivergent individuals to cling even tighter to their eating disorder. Why? Because it’s the one thing they feel they can maintain a sense of control over. So while FBT may look great on paper, it doesn’t consider how its principles tend to clash with the reality of the neurodivergent experience of eating disorders.

The Danger of Prioritizing Weight Gain For Neurodivergent People

Another problem with FBT is that it prioritizes weight gain above all else. To paraphrase what Lock and Le Grange say in their book Help Your Teen Beat an Eating Disorder, “cognitive impairment due to malnutrition must be addressed first to make other therapeutic interventions effective.” And this isn’t the first time I’ve heard this concept.

While I was in an eating disorder clinic in the Netherlands, a psychiatrist literally told me that "therapy would be ineffective until I gained weight." To be fair, professionals that say this definitely have a point – because malnutrition does impact cognitive function. However, you simply cannot push aside the emotional, sensory, and psychological factors that accompany an eating disorder, especially in neurodivergent individuals. Prioritizing weight gain above all else can create an oversimplified view of recovery that fails to address the individual's holistic needs.

When FBT Causes Relapse Into the Eating Disorder

Even if the initial FBT phase “works” and the child gains weight, they’ll likely lose the weight and “relapse” as soon as they regain some autonomy. Why? Because the underlying autistic traits that contributed to the eating disorder in the first place weren’t addressed. Eating disorders are not about food or weight. They’re adaptations, protective mechanisms to cope in a world that feels overwhelming. So, pressuring a neurodivergent individual to gain weight without simultaneously addressing their sensory sensitivities, fostering safety and trust, and respecting their heightened need for autonomy, will only further entrench their reliance on disordered behaviors. This is because the eating disorder gives them a sense of safety and autonomy, even more so when their autonomy is being pulled right out from under them in the form of FBT!

In fact, when I got the idea to create the Autistically ED-Free Academy, I wanted to make sure it was EXACTLY what neurodivergent individuals and their caregivers were looking for. So, I put out a survey. And one of the most prominent themes that emerged was how unhelpful – and often traumatizing – FBT was. Here are just a few of the responses:

"FBT was incredibly traumatic for us. We were told to go against our instincts, but we didn’t know what else to do because we wanted to trust the professionals. After fighting every day, throwing plates across the room, siblings afraid, we couldn’t do it anymore. Our child now barely speaks to us and is refusing all help."

"Our FBT team tells us we've done a great job of following the FBT protocol, but it just hasn't worked for her. We're told that what we're doing is fighting the ED, but it feels like we're also fighting the person she is. It feels like we're trying to change who she is, but it doesn't make sense to do that."

"FBT pushed her further into the ground. It was missing the patient’s input. Nobody really listened to my daughter (at that time including me) and everyone forced their ideas and treatment upon her. A trauma for her. Then we tried doing CBT, but at this point my daughter had lost trust and was not feeling safe enough to accept help from a specialist."

Stories like this make me so sad because it doesn’t have to be this way. So many treatment professionals try to brainwash you into believing that this “evidence based” approach is the “best” approach for anorexia and other eating disorders, but evidence based would better be called evidence biased. Why? Because the evidence in approaches like FBT is often collected in environments and on populations that don’t reflect the reality of neurodivergent individuals.

FBT: Evidence Based or Evidence Biased?

Look, I’m not going to pretend that I’m not biased. OF COURSE I’m biased, I’m a subjective human! But this also means that the creators of FBT and the people for whom FBT does work are also biased. Just because FBT didn’t work for me and my family and every single person I’ve worked with, doesn’t mean it won’t work for other people and their families. But again: just because it works for them, doesn’t automatically mean we have enough evidence to claim that it is the “gold standard” for everyone. It’s like that saying: “If you meet one autistic person, you’ve met one autistic person.” In other words: every autistic person is different, so one autistic person’s experiences or traits may not apply to others. Similarly, the underlying factors for one person’s eating disorder will be different than for another, which also means that just because FBT works for one person, doesn’t mean it will work for another.

If FBT has worked for you, that’s great. I’m seriously questioning why you’re still reading this but still, that’s great! But if you're reading this and have had similar experiences to me and my family and my clients and FBT hasn’t worked – and in fact, has only made everything worse – you’re not broken and you have done nothing wrong. You did the best you could with the resources and knowledge you had at the time. I believe that true growth happens when we adopt a mindset of lifelong learning so we can continually turn our best into better. If you’re ready to embark on an 8-week journey to improve your understanding of the connection between autism and eating disorders, you want a community of people who truly get you, and you want practical strategies to support either yourself or a loved one through the recovery process in a neurodiversity-affirming way, come join us in the Autistically ED-Free Academy!