In our previous post exploring the intersection of autism and eating disorders, we highlighted the significant overlap between these conditions. Research suggests that 4-23% of individuals with eating disorders are also autistic.
Certain characteristics of Autism Spectrum Disorder (ASD) can pose unique challenges in traditional eating disorder treatment settings. These traits include:
– A need for rules, routines, and rituals
– Inflexible thinking patterns
– A desire for familiarity and control
– Difficulties with social and emotional interactions
These factors can make navigating treatment and recovery more complex for autistic individuals compared to their neurotypical counterparts.
In this post, we’re privileged to share insights from May, a former Altum Health client. May candidly discusses her experience of receiving eating disorder treatment as an autistic individual. She explores the obstacles she faced in traditional treatment environments and offers valuable suggestions for making these settings more accessible to neurodiverse individuals.
May’s recommendations touch on several key themes:
– Reconsidering the treatment environment
– Providing increased choice and flexibility
– The importance of carefully considered language
– The importance of considering ‘graded changes’ as treatment evolves
We hope this personal account offers insight into the unique experiences of autistic individuals in eating disorder treatment. Our aim is to help reduce anxiety around seeking help for those with autism who may be struggling with an eating disorder.
The treatment environment
One of my first observations as an autistic person seeking treatment for my eating disorder was that eating disorder treatment clinics can be overwhelming for autistic patients, particularly if they’re on a main hospital site.
Waiting rooms are often noisy and busy and involve the social ‘norms’ of having to approach a desk to ‘check in’ to your appointment or sit and wait for long periods. Some patients find this unbearable and can find it extremely anxiety-provoking.
It can also be difficult to wear noise-cancelling headphones, for example, as you could miss your name being called, so it’s not always possible to alleviate some of the auditory stimuli, even with sensory aids.
The sensory needs of autistic patients with eating disorders will vary from one individual to the next, but it’s worth exploring treatment centres that consider the needs of autistic patients when seeking help.
Some adaptations to look for could include:
- Alternative ways to check in for an appointment
- Neutral decor
- Reduced visual stimulation/clutter
- An online virtual tour of the clinic and how to get there on the website
In an inpatient setting, it might also be possible to ask to visit the ward before admission to make sure it’s appropriate for your needs. This will also give you the opportunity to ask relevant questions and agree on a care plan.
Something as small as having the radio playing in the dining room could be overwhelming for a patient with autism. But a prior visit could help you to identify a separate, quieter dining room, more appropriate for your needs.
PEACE Pathway has a Wellbeing Communication Passport, which I found extremely helpful to help express my sensory and other needs to treatment providers.
Flexibility and control
Another thing to consider is that eating disorders are manipulative entities that take over your thoughts. This can make it extremely difficult for healthcare professionals and the patient themselves to decipher the traits and behaviours of the individual and those of the eating disorder.
Unfortunately, this often leads to very strict, limiting rules. Instead of providing a safe and containing structure, which is often comforting to patients with autism, it can end up being suffocating and unnecessarily rigid and inflexible.
While – in my opinion – some aspects of treatment should be strict and non-negotiable, for example, targets for the volume of food eaten, especially for those at higher medical risk, patients should also be granted an element of choice. For example, the type of food you wish to eat, whether you use utensils, and what type of therapy is right for you.
When I was in a specialist adolescent eating disorder unit, we were only allowed three food ‘dislikes’, which had to be confirmed by our family. Overall, this was a helpful way to ensure patients didn’t avoid ‘fear foods’ or entire food groups as a means of restriction. However, my sensory issues meant that my dislikes were quite broad and uncharacteristic.
For example, while I made no attempt to avoid milk, one of my ‘dislikes’ was milk on cereal. I hated the texture of ‘crunchy’ foods going ‘soggy’. Therefore, each morning, my cereal was served in a bowl with the milk in a separate glass.
My advice would be to look for clinics that offer individualised care planning. This simple adaptation made meal times slightly more tolerable for me. Feeling that I had an active role in my treatment rather than that the treatment was just something happening ‘to me’, helped towards my overall wellbeing and recovery.
Language and communication
As an eating disorder patient, it sometimes feels as though your voice is lost; conversations happen behind closed doors, and decisions are made without your involvement.
When changes to care plans, menus, or routines in eating disorder treatment are not communicated to patients with autism in good time, it can cause the patient to feel anxious and unsettled.
Even at my most unwell, my CAMHS service gave me the opportunity to attend care reviews and multi-disciplinary team (MDT) meetings in some capacity. Even if this meant submitting my wishes in writing and only being physically present for the last ten minutes so the team could give me feedback. However, this increased in duration as I progressed in my recovery and independence.
Unfortunately, a ‘patient-centred care’ approach is not always standard, even in adult treatment settings where you would assume there would be greater autonomy and shared decision-making.
When I did my NHS apprenticeship training, I attended a workshop on the ‘Me First’ campaign. Specifically, how to communicate with children and young people as healthcare professionals.
We were taught the phrase, ‘No conversation about me without me’, which has stuck with me ever since. If you or a loved one is seeking treatment for an eating disorder, I would urge you to remember this useful phrase.
Patient-centred care
I believe it’s vital that the patient is at the heart of everything the treatment provider does, and this should be demonstrated through actions and not just words. For example, patient-led forums and involvement in MDT meetings.
When looking for a treatment provider, it’s worth spending time checking whether it hosts any patient-led feedback forums, how often the MDT meetings will be, and who will be present at these meetings. Remember, patients are entitled to bring an independent mental health advocate (IMHA) with them to ensure their views are listened to and their voice is heard.
Choosing words wisely
As an autistic person, I take what people say literally. This can be extremely amusing to my friends and family when I misunderstand the punchline of a joke, for example. However, in a healthcare setting, it has a huge impact on my understanding and interpretation of the information given.
For example, when I was 12 years old, I was told I was having an ‘MDT’ meeting the following week in my CAMHS outpatient session. I had no idea what MDT stood for and panicked when I found out this was an abbreviation for ‘multi-disciplinary team’. I fixated on the ’discipline’ part and worried that I was therefore going to be ‘disciplined’ or ‘punished’ in some way. However, in reality, it was just a meeting between various professionals from different specialties, including my pastoral care lead at school, my mum, my specialist eating disorders nurse, and my consultant psychiatrist.
If the appointment letter or the nurse/receptionist had explained that I would simply be having a meeting with lots of people from different specialities to collaborate and decide on the best plan for my future care, it would have relieved a great deal of anxiety and stress leading up to the appointment.
The same principle of language choice applies to verbal communication; figurative language and metaphors can be very confusing to autistic patients. My friend in the hospital told me she was told to ‘hop on the scales’ at a weigh-in. She believed she had to literally hop on one leg and found this instruction confusing (as did the nurse watching her!).
This example is harmless and amusing, but it’s important to pay attention to the language choices used at mealtimes and during therapy. Ambiguity around certain words can be distracting, trigger emotional responses, and create barriers to communication, which is especially problematic when the patient is in an already heightened state of anxiety.
I recommend ensuring any particular words or phrases you find upsetting are documented clearly in your notes (ideally in a communication passport). You may also wish to provide a ‘bank’ of alternative, more helpful phrases, or a suggestion of topics to talk about to distract you or help to redirect the conversation should you start experiencing negative thoughts.
Finding the right type of therapy
Many clinics specialising in eating disorders offer a free initial consultation, allowing you to assess their approach and determine if it aligns with your needs. For those struggling with verbal communication, look for clinics offering alternative treatment options to face-to-face talking therapies:
- Alternative therapies: Many clinics incorporate alternative options such as art therapy, music therapy, or sensory integration techniques. These approaches can be particularly beneficial for individuals on the autism spectrum who may struggle with verbal communication.
- A flexible approach: Some therapists adapt their communication style and integrate these alternative methods into more conventional therapies, like CBT-E (Enhanced Cognitive Behaviour Therapy) or MANTRA (Maudsley Model of Anorexia Nervosa Treatment for Adults). This flexibility allows for a more personalised treatment experience, enhancing engagement and potentially improving outcomes for those facing the dual challenges of autism and eating disorders.
Managing change
Change is incredibly daunting to everyone, but particularly to patients with autism.
In many ways, an eating disorder inpatient ward, which provides a certain rigid structure and ‘containment’, can reduce some of the anxieties associated with executive function, routines, and especially around eating.
If breakfast is served at 8 am, it will always be served at 8 am. If there is an art group on Tuesday afternoons, the patient will always expect the art group to be on Tuesday afternoons. Even the lunch menu being on rotation with fairly limited options provides an element of ‘certainty’ which can again alleviate some of the anxiety around eating.
These routines are often beneficial in the early stages of recovery, however, when the time comes to build up to home leave and eating out, it can be incredibly stressful for patients with autism. They may find the sudden loss of structure and consistency extremely challenging to deal with, on top of the existing anxiety around food.
Therefore, in the case of neurodivergent patients, it’s important to ensure a ‘graded’ treatment approach is offered, which can adapt to their needs throughout their recovery. Essentially, having the option to step up or step down the treatment options available such as day patient and intensive outpatient as an alternative to hospital admission or to prevent a readmission post discharge.
Be patient
Finally, be patient. I echo this message to both autistic people living with an eating disorder and also their loved ones.
Eating disorder recovery takes time and patience. Making the first steps towards eating disorder recovery is like taking a leap of faith – change is terrifying and uncomfortable. However, the anxiety surrounding change is further elevated in autistic patients, so even more patience and understanding are needed!
I know it can be difficult and frustrating, particularly for those living with the individual, to be confronted with the reality of how long their child/sibling/flatmate is going to be ‘in recovery’. But recovery is truly a marathon and not a sprint and there are no ‘shortcuts’ to overcoming an eating disorder.
Slow progress is better than no progress, and educating parents/carers on what to expect in eating disorder recovery is especially helpful when it comes to autistic patients. I know I speak for many by saying that, when we are determined to do something, we tenaciously stick to it, but when we don’t want to do something, we can be incredibly stubborn!
Ongoing support
I believe carer support groups are an under-utilised resource, particularly in adult eating disorder settings. I wish every eating disorders service offered one (both virtually and in-person to ensure it’s inclusive). This would help carers to better understand their loved one struggling with an eating disorder and reduce the feeling of isolation and loneliness.
Moreover, multi-family groups, where different topics are discussed or certain activities are performed such as cooking a family meal, have proven to be a successful intervention in Children and Young People’s (CYP) eating disorder treatment settings. I would love to see more of this to better support autistic patients who still live at home/with family.
Overall, please remember, ‘slow and steady wins the race’. Your rate of progress should be guided by you and what you’re capable of achieving. Just like a marathon, sometimes, you may feel able to make progress faster than expected and whizz through multiple ‘mile markers’ (goals) at a time. Whereas other times, you may need to slow down a little, stop to stretch, or get some water before carrying on. As long as you reach the metaphorical ‘finish line’ of recovery in the end, then it was all worthwhile.
Please remember, as a healthcare professional, a carer, or a patient, that although the eating disorder is something that needs to be challenged and beaten, autism is NOT a negative and it does not need to be ‘cured’. Of course, autism makes recovery more complex and it can be a case of ‘trial and error’ to find the right approach for the individual, but just as treatment should be individualised for neurodivergent patients, this should be the gold standard, regardless.
Just because autistic people see the world through a different lens, that doesn’t make the colours appear any brighter or dimmer. Our lens isn’t ‘broken’, but rather we all see a different spectrum of colours that can be equally as beautiful.
I hope that, if you are struggling with an eating disorder, you will learn to find your unique sparkle again.
Never give up.
May
We’d like to thank May for sharing her personal experience and advice on this subject.
For help and support with your eating disorder recovery, please get in touch to book a free, 20-minute consultation with our licensed professional therapists.
