Is an Eating Disorder Overshadowing Neurodivergence?

7 Oct

When an eating disorder is present, it is easy for healthcare professionals and families to focus entirely on food and weight-related behaviours. However, for many individuals, an eating disorder may actually overshadow an underlying neurodivergent condition such as autism or ADHD, a phenomenon known as diagnostic overshadowing.

In this insightful Q&A, Cherry (Youth and Online Learning Lead at tastelife) speaks with Caroline, an integrative therapist and mental health trainer, to explore how sensory processing, trauma, and neurodiversity intersect with eating disorders.

Welcome

Cherry: Welcome everyone. Today we're talking about Eating Disorders: Is an Eating Disorder Overshadowing Neurodivergence?

I'm Cherry, Youth and Online Learning Lead at tastelife. My own experience of bulimia has given me a real passion for helping others affected by eating disorders.

Today we're joined by Caroline, a CPCAB-registered integrated therapist, mental health trainer with NHS England and one of our trained Recovery Course Leaders.

Caroline: Thank you. As a therapist and mental health trainer, I'm passionate about equipping people with the knowledge and skills they need to thrive. As a neurodivergent professional, I'm also passionate about challenging misinformation and stigma around neurodivergence.

Neurodivergence refers to differences in cognitive processing, emotional regulation and sensory processing. Neurodivergent people, particularly autistic people and people with ADHD, can also experience eating disorders or disordered eating.

What is neurodiversity?

Cherry: What clues might suggest that someone with an eating disorder could also be neurodivergent?

Caroline: One important concept is diagnostic overshadowing. This is when healthcare professionals mistakenly attribute new symptoms to an existing diagnosis, rather than recognising that something else may be happening.

Once someone has a diagnosis, it can be easy to assume that subsequent difficulties are simply part of that diagnosis. We need to remain open to the possibility that something else may be contributing.

It's also important not to assume that every behaviour is caused by neurodivergence. Some behaviours may instead be connected to trauma, so we need to consider the whole picture.

One useful area to explore is sensory processing. We usually think about five senses:

Sight
Sound
Taste
Smell
Touch

There are also three less familiar senses:

Vestibular: balance
Proprioception: body awareness and where we are in space
Interoception: awareness of what's happening inside our bodies

Neurodivergent people may experience sensory input differently or more intensely. They may be particularly sensitive to sounds, bright lights, textures or smells, for example.

Talking to healthcare professionals

Cherry: What advice would you give to someone who feels that clinicians aren't recognising the possibility of neurodivergence?

Caroline: Be open with your clinician about your concerns. If you're feeling intimidated, take someone with you who knows you well and can support you.

It's also reasonable to ask whether your clinician has training in neurodiversity or trauma relating to eating disorders. If necessary, you can ask for a second opinion or a referral elsewhere.

I'd also recommend keeping written notes about important dates, significant events and behavioural patterns. Having this information available can be very helpful during appointments and assessments.

Understanding interoception

Cherry: Could you explain ‘interoception’ a little more?

Caroline: Interoception is our awareness of what's happening inside our bodies. This includes recognising sensations such as hunger, fullness, pain, temperature and emotional feelings.

Some autistic people, for example, may find it difficult to identify or describe their emotions. This can be known as alexithymia.

Visual tools such as pictures or emotion cards can sometimes help someone communicate what they're experiencing when they can't easily find the words.

Eating disorders, trauma and neurodiversity

Cherry: How can sensory differences translate into food-related behaviours? How can families distinguish between behaviours connected to an eating disorder and those connected to neurodivergence?

Caroline: It's important to think about the underlying causes of eating disorders rather than focusing only on the behaviour we can see.

Trauma and emotional wounds can play a significant role. For some neurodivergent people, characteristics such as black-and-white thinking or demand avoidance may become more rigid when combined with trauma and intense emotions.

For example, someone may become very fixed in the belief:

"I'm not going to eat."

When trauma, emotional intensity and rigid thinking come together, they can reinforce eating disorders or disordered eating behaviours.

We therefore need to understand eating disorders, neurodiversity and trauma together, while avoiding assumptions and stereotypes.

Cherry: Trauma isn't always one huge or dramatic event. Repeated criticism, bullying or seemingly small experiences can also have a lasting emotional impact.

Caroline: Exactly. Trauma isn't simply what happened to us; it's what happened within us because of what happened to us.

It can affect how we see ourselves, other people and the world, as well as how we experience our bodies and sensory information.

What if you don't feel heard?

Cherry: What can people do if clinicians believe that everything they're seeing is simply eating disorder behaviour?

Caroline: Keep going and try to remain constructive and collaborative with healthcare professionals.

Educate yourself and share the information you've gathered. It's also reasonable to ask whether your healthcare professionals have received appropriate neurodiversity training, and to request a second opinion or referral elsewhere if necessary.

Three practical takeaways

Cherry: If you could leave people with three practical pieces of advice, what would they be?

Caroline:

1. Believe yourself.
Trust what you know about your own experience. If something doesn't seem right, don't ignore it. Healthcare professionals are human and can sometimes get things wrong.

2. Build a reliable, well-informed support network.
Advocating for yourself can be exhausting. Having people around you who understand and support you can make a huge difference.

3. Educate yourself.
Learn about neurodiversity, eating disorders and trauma, and understand your rights and what support should be available to you.

Q&A

Where can people find reliable information?

Caroline: Look for specialist neurodiversity hubs or support services in your local area. The National Autistic Society is also a useful starting point.

Many organisations now offer online communities as well as face-to-face support. Searching for terms such as neurodivergent support hub, autism support hub or neurodiversity support services can help you find local and online resources.

What if my child has been referred to CAMHS for an eating disorder but I also suspect neurodivergence?

Caroline: If it isn't raised by the clinical team, ask about it. You're advocating for your child's wellbeing.

If you're not satisfied with the response, you can ask for a second opinion. It's important that clinicians consider the whole person rather than focusing on just one diagnosis. One option is to seek a private healthcare provider.

Another option, and something I've done for both clients and professional colleagues, is to refer people to specialist assessment centres in South Africa. People can often receive the same high standard of assessment for around a third of the cost. One of the centres is a dedicated Neurodiversity Centre, and another works closely with the National Autistic Society here in the UK. I've referred a number of colleagues and clients to these services and have had excellent feedback. [See links at end for more information.]

How do you understand the root causes of an eating disorder?

Caroline: In my experience, unprocessed trauma can be an important underlying factor. It's important to understand someone's history, experiences and significant events in their life.

Repeated messages such as "You're not good enough" or constant pressure around achievement can also have a significant emotional impact over time.

Cherry: This is something we explore on tastelife courses too. Eating disorder behaviours are often the visible part of a much bigger picture, and creating a safe, non-judgemental space can help people explore what's underneath.

Is everyone with an eating disorder neurodivergent?

Caroline: No. There are many different reasons why someone develops an eating disorder. Neurodivergence can be one contributing factor, but it is only part of a much bigger picture.

There is research showing that autistic people are at increased risk of some co-occurring conditions, including eating disorders, but that doesn't mean that everyone with an eating disorder is neurodivergent.

What about ADHD?

Caroline: ADHD can also involve sensory processing differences and difficulties with emotional regulation. The same eight sensory processing areas we discussed earlier can be relevant.

It's important to remember that neurodivergent people may experience emotions and sensory experiences very intensely, and this can affect how they respond to food and other aspects of daily life.

A final thought

Cherry: Thank you so much for all your thoughtful questions.

Caroline, thank you for sharing your knowledge and experience with us. You've given us lots to think about, particularly the importance of looking beyond the eating disorder behaviour and considering the whole person.

Caroline: Thank you for having me. It's been a pleasure.