‘I can only apologise to the patients where I didn’t recognise their autism’

What needs to change in our psychological understanding of eating disorders?

At the moment, I'm focusing on the understanding of comorbidities in eating disorders. These are very important in treating eating disorders. Margaret Sala and colleagues recently published a meta-analysis finding that no matter how successfully we treat people, a large proportion of patients relapse if they have comorbid depression and anxiety disorders. Given that most of our patients have these comorbidities, the relapse rate is high, particularly in young people.

In addition, about a third of our patients have coexisting autism with eating disorders.

Coexisting autism and eating disorders requires a more heightened focus. Specifically, the communication and delivery style of psychological therapies needs to change, including when we address sensory sensitivities. We also need to do more work on prevention in schools, and then support other intensive treatments, where we identify gaps.

Can you give me an example of how you might adapt the communication style for somebody who has been diagnosed with both an eating disorder and autism?

Communication patterns are really important. Socratic questions, such as the one you have just used, and open-ended questions, might be very challenging for someone who has autism. Metaphoric language can also be difficult. It's better to say what you mean directly if you are in any communication with an autistic person.

When I started to work with eating disorder patients 26 years ago, I often attended lunches and dinners to support patients with the most difficult part of the daily routine in the inpatients ward. I thought that to support people, it would be good to ask about their hobbies, interests, talk about the weather, engage in social chitchat. But actually, if you have someone with autism and anorexia nervosa, this just means that instead of the person focusing on their meal – which is already difficult – we are introducing an extra layer of difficulty, social communication, which takes quite a bit of effort to follow. I can only apologise to the patients where I didn't recognise their autism. I was doing my best, but it was not necessarily a supportive strategy.

Since we started to really listen to lived experience, we learned a lot. People would tell us: 'How many times have I heard "it's the anorexia speaking" but it's not, I just can't stand crunchy foods. Give me something more acceptable and I will make an effort.' One person couldn't stand the particular sized peas that were served with the fish and chips, another patient was very sensitive to food temperature. We had people very sensitive to food colour or smell, or spices, but these could easily be replaced… I'm talking about small adjustments. I don't have all the answers, but I can only feel sorry for people who don't have that trust in our services.

It sounds to me like the way you visualise both the eating disorder and your position of expertise has shifted. Do you even see the eating disorder as the primary thing to be addressed now?

The most honest answer would be that we don't know. We still have a long journey ahead, with a lot of work to do to truly understand it fully.

First, we need to understand autism better. In females that is a really hard thing to do… women camouflage very well, many have a special interest in social communication, and they may have interests in socially defined 'girly' things that don't necessarily trigger a clinician to investigate more. Most of the time we need a developmental history if we are part of adult services, as parents or their support network who could give us information about early development are not necessarily present. With elderly groups of patients we also do not usually have a developmental history, which makes it harder to distinguish between autism and eating disorders.

When I start talking about adjusting and calibrating an eating disorder pathway for the autistic community, I often get a first criticism around people having pseudo-autistic characteristics when they starve. In the Minnesota Starvation Experiment, healthy men were put on a very restricted diet for six months. They lost their libido, developed obsessive compulsive features, were exercising more (paradoxically), and had noticeable changes in their social interactions and on the cognitive task performance. If you are a detail-focused person, you become even more obsessed with that detail if you are starving; if you are a less flexible person, you become even more rigid. If you are socially anxious person starvation exaggerates social isolation and makes you to avoid social gatherings even more. So, of course malnutrition can exaggerate all these autistic features, but it doesn't matter really in terms of planning treatment strategies… we need to try our best to engage people in the treatment. We can monitor whether our communication strategies and adjustments to the sensory environment are helpful to deliver psychological treatment and support a person in the recovery journey. And following weight gain, we will see if these features disappear or remain stable.

I get the impression you think they will mostly stay stable.

Yes, and we have some good data from clinical audit since I became a Consultant Clinical Psychologist in 2004. We have used the Autism Quotient Short Screener from Simon Baron-Cohen and colleagues, and we have seen that autistic characteristics are stable before and after treatment (see Tchanturia et al., 2019; Li et al., 2020).

We have also tested this longitudinally, in a study where we assessed young people with and without autistic characteristics who had eating disorders. We repeated the autism assessment six months, and two years later found similar results (Leppannen et al., 2022). Of course, we need more sophisticated research methodology, beyond self-report… but at the moment the data supports my argument that if we try our best to address some of the issues which might help an autistic person to receive eating disorder treatment, this is a job well done.

Autism should be respected; it comes with lots of strengths. Eating disorders should be treated: no argument about that. But this leads to the question of how they should be treated. Perhaps it could be in a more friendly environment, through sensory wellbeing workshops, providing people with the opportunity to create soothing strategies and toolboxes… Sometimes people are not even aware of these sensory sensitivities if they are not talked about. Simple things… a collaborator of mine, Pooky Knightsmith, said she could not hear anything in the psychotherapy sessions while there was a clock in the room. All she could hear was the clock ticking. Once she was diagnosed with autism, she found the guts and courage to say 'actually, can we remove it?' (see Knightsmith, 2021, p.37).

That's one of the prejudices in eating disorders… people say 'they don't need an extra diagnosis, we are traumatising people'. No, we aren't. Autism is nothing to be traumatised about. It is a parallel neurodevelopmental trajectory.

I'm very interested in that lens you're looking at eating disorders through, and how that impacts your relationship with the person. I have spoken with people who work with eating disorders in the past, and they will openly admit really struggling to empathise with the patient… at a certain point, they find that all they can really say is 'If you do not eat, you will die'. They see it almost as a monster that has overtaken the person.

It is a monster, but we should use autism coexistence in our favour in the recovery journey. We know that quite a lot of women with eating disorders and autism are high functioning; lots of energy goes on masking, and this energy could be channelled to fight together against the monster. For example, if we ask them whether they prefer written communication, visual aids, what type of questions? Is this environment suitable: do dining room sounds annoy you? How can we make the situation easier? If we say lunch is at 12, they will expect lunch at 12: this is not always possible in the NHS, so perhaps our patients just need a bit of extra explanation and support when situation becomes uncertain, unpredictable.

When we started to introduce the PEACE pathway (Pathway for Eating disorders and Autism developed from Clinical Experience), clinicians – especially dieticians – were worried that if we introduced a 'beige choice', everyone would want that diet. Our main approach is to introduce a wider variety of foods… if everyone switches to the beige diet, that's no good. And it was true, everybody wanted it in the beginning, for a couple of weeks. But then people who don't have autism were bored and switched to a vegetarian or meat menu option… but it's better to have this choice and give it for those who do need it.

And you're not too bothered what they eat, as long as they're getting enough to sustain themselves?

When someone is on their deathbed with a body mass index (BMI) of 11-12, should we really be fussy about how we help them to increase and hopefully maintain their weight? Later in the treatment, we might try more variety very gently, when the time is right for them.

The adjustments are interesting… they're not major things, are they? In the recent Christine McGuinness documentary you featured in, one line at the end really stayed with me: 'I just need a few extra things in place'.

That's right. There are non-negotiables, though. The person needs food. Food is a medicine in this context. So it's good to set up from the beginning, 'this is a ward that needs to look after you and provide food as well as psychological support'… but within this framework, let's see what we can negotiate and how we can make this journey easier.

What I learned from studying clinicians working with this pathway was that sometimes they can be rigid because they're trying their best to provide their best expertise. They perhaps don't have specialist training around autism so they might be anxious… and anxiety always drives rigidity.

So through introducing a culture where we don't always have a top-down approach, we started to exchange our expertise: we were providing some eating disorder expertise within the autism unit, but then having them come in to talk about their strategies and psychological formulation based interventions, the adjustments they were making in Cognitive Behavioral Therapy (CBT) treatment for example. When I measured confidence in clinicians at the beginning of the PEACE pathway, and then two years later, it had risen from 40 per cent to 86 per cent (Tchanturia et al., 2020). And now I never hear from our clinical team 'Oh we can't treat this person, there is autism'. Everyone is confident that we can treat eating disorder in autistic people.

How happy are you with eating disorder provision in the UK now?

Everything is relative. If I wear my UK hat, I wish our patients had shorter waiting lists for an autism diagnosis; I wish people didn't have to wait a year or more for the treatment; I wish we had better recognition of comorbidities. If I wear my Georgian hat – my home country –we don't have a specialist service for eating disorders at all. That's even though we know that eating disorders are just as problematic as in any country. So my wish is more modest: just to start developing the clinical service for the people with eating disorders.

The only difference I'm noticing is that when I started to talk about eating disorders in Georgia, two decades ago many people would say 'This is a Western problem'. Now, nobody says that. Recognition of diagnosis, and needs, has increased dramatically, but still there is no specialist clinical service.

Why?

Funding and expertise. You need multidisciplinary expertise. We have excellent dieticians, occupational therapists, social workers in the UK… it's not just psychologists. With the PEACE pathway, there are people with lived experience involved, carers… it took two decades to arrive at this innovative pathway. So, it's about building a skilled and specialist multidisciplinary team, and that's not such an easy task. In Georgia, we do not yet have strong professional communities in social services, occupational therapists and specialist nurses. Building teams with specialist multidisciplinary expertise takes time, skills, team building. It needs funding, so that's why what I wish for is all relative.

Just to go back to what you mentioned about prevention… what needs to change there?

The best way will be to have some training for teachers, and we need more school-based psychologists in the UK. Teachers need to be trained to spot the early signs of eating disorders. At Creative Education, Jessica Parker, who is the Education Director and is also doing a PhD with me at King's College, is working with children, young people and schools across the country to promote preventative strategies and train them in how to spot and respond to eating disorders. She is very keen to show schools how they can play a key role in being curious about change, and acting on any concerns they may have about a young person showing the potential signs of an eating disorder. Beat, the national eating disorder charity, is also making lots of effort. There is good work going on, but perhaps we need more… especially after Covid.

Do you think there is any radical shift on the horizon, some magic bullet that is going to completely change the way we tackle eating disorders?

We can think of eating disorders as the Cinderella of Mental Health. It's a very severe illness, but not necessarily recognised and funded. Without generating research evidence, the field will not move fast enough. I am a great believer in good research, and then shifting what happens in the field. But without the funding, it's really difficult to predict a brighter future.

I know how much time it takes to apply for grants, and the success rate is pretty low, particularly after Brexit. I am so grateful the Health Foundation gave us £75,000 to start the PEACE pathway; the Maudsley Charity gave us another £250,000. This is all we had funding for, but it has created a huge body of evidence, and now it is scaling up. Buckinghamshire, Oxfordshire and Berkshire are following us and implementing a PEACE pathway for young people with eating disorders and autism. In Scotland, in collaboration with colleagues from the University of Edinburgh, we are starting to develop tailored assessment for autism in specialist eating disorder settings. So, it is possible, with a small amount of money, to make good shifts. With more funding, we could do so much more… then I would have confidence to say we can change the landscape of eating disorder treatment.

It sounds like a challenging area to work in, practically and emotionally. What keeps you going?

Hope. I have worked in many fields in mental health; in Georgia, I was a Consultant Clinical Psychologist for a very busy outpatient clinic in our national service, and I saw all sorts of patient groups. Moving to the UK 26 years ago, I started to focus on eating disorders. When I arrived on the ward that very first time, in Bethlem, it was really shocking to see young, bright, talented women with anorexia nervosa spending months in the inpatient ward with physical and psychological challenges. I realised how difficult it is to treat anorexia nervosa and other eating disorders. What breaks my heart is that so many bright, talented people could be trapped in their eating disorder. When I hear and see recovery stories, it makes me happy and gives me hope that recovery and getting their life back is possible.

It is fascinating to collaborate with people with lived experience. Sometimes it takes time, but once you establish collaboration then wonders can happen. We are learning from each other. And when people who have been deskilled by their illness see the fruits of collaboration, it's a realisation of some of the ambitions and talents they have. They are more stimulated and motivated and it certainly improves our understanding and innovates treatment. This is a real reward.

Kate Tchanturia is Professor in the Psychology of Eating Disorders at King's College London, a Fellow of the British Psychological Society, the Academy of Eating Disorders, and Academy of Europe. She is Visiting Professor in Tbilisi Illia State University and Medical University, Georgia.

In 2021 Professor Tchanturia received the Distinguished Contribution Award from the British Psychological Society's Practice board.

Key sources

Leppanen, J., Sedgewick, F., Halls, D. & Tchanturia, K. (2022). Autism and anorexia nervosa: longitudinal prediction of eating disorder outcomes. Frontiers in Psychiatry, doi: 10.3389/fpsyt.2022.985867

Li, Z., Dandi, Y. , Toloza, C., Carr, A., Oyeleye, O. & Tchanturia, K. (2020). Measuring clinical efficacy through the lens of the audit data in different adult eating disorder services. Frontiers in Psychiatry, 11, 599945.
Knightsmith, P. (2021). Anorexia and Autism lessons learned on the road to recovery. Chapter 3 in Supporting Autistic People with Eating Disorders, Edited by Kate Tchanturia. Jessica Kingsley Publishers.
Sala, M. et al. (2023). Predictors of relapse in eating disorders: A meta-analysis. Journal of Psychiatric Research, 158, 281-299.
Tchanturia, K., Adamson, J., Larsson, E. & Westwood, H. (2019). Characteristics of autism spectrum disorder in anorexia nervosa: A naturalistic study in an inpatient treatment programme. Autism, 23(1), 123-130. 
Tchanturia, K., Smith, C., Glennon, D. & Burhouse, A. (2020). Towards an improved understanding of the Anorexia Nervosa and Autism spectrum comorbidity: PEACE pathway implementation. Frontiers in Psychiatry.