Did you know that April is Autism Awareness Month? As research and awareness grows around the neurodiversity paradigm, links between eating disorders and neurodivergent individuals and subsequent approaches to treatment are also evolving. Currently, most research is focused on the links between autism and two types of eating disorders; anorexia nervosa and ARFID. Research shows that approximately 37% of individuals with anorexia nervosa are autistic. ADHD, another neurodevelopmental phenomenon, has also been correlated with bingeing and purging eating disorder subtypes such as bulimia nervosa, as well as binge eating disorder.

Remember, Autism is just one neurotype or neurodevelopmental phenomenon! Image source: https://stimpunks.org/glossary/neurodiversity/

For eating disorder recovery, it is important that a person-centered approach to care and treatment is used, which seeks to understand a person’s unique experience of the world, as it is with any person experiencing an eating disorder.

Reframing our beliefs and understanding that neurodivergence is a functioning difference in the brain with unique strengths and characteristics, rather than an impairment, is crucial to help make treatment less stressful and more successful for everyone.

We know that carers play a key role in any eating disorder treatment and each person experiencing an eating disorder will have individual approaches that will work for them.  However, here are some of the things we are aware of that can be helpful when supporting someone who is neurodivergent and has an eating disorder in any setting:

• Capitalizing and showcasing individual strengths and skills such as; strong attention to detail, excelling in repetitive tasks, strong verbal skills and creativity etc, to assist in recovery
• Providing clarity, structure and routine to treatment and meal support. For example: serve meals at the same time, have a given time for how long the meal should take.
• Provide clear instructions, breaking down tasks into smaller steps (this includes things outside the eating disorder such as work tasks or homework requirements)
• Plan any changes to routine or expectations rather than it being a surprise
• Consider sensory overload (bright lights, loud noises, strong smells). Things like noise cancelling headphones, reducing visual clutter at the meal table or in the treatment room, sitting elsewhere for meals if there are strong smells or producing more pleasant smells like citrus or lavender can help.

Some of the things that may be helpful for a treatment team to understand and implement in treatment may be:

• The therapeutic connection may take a longer time to build
• Longer session times can be helpful for those who experience slower processing speeds
• A short break during the session if possible, for those with more difficulty concentrating
• Thinking about the environment like seating positions, lighting, regularity of appointment times, written information can all be helpful
• Consideration of the interactions of medications with the eating disorder such as: ADHD stimulants that can suppress the appetite. If this is the case, it is important to include clinicians with this understanding into the team.

There are different ways to communicate what works and doesn’t work for each person.  You or your loved one could consider drawing up a “Communication Passport” so your loved one’s preferred communication style, preferences, sensory sensitivities and goals are fully understood by all professionals/teachers/coaches in treatment. Another way could be to have an introduction letter, that includes detailed information around the specific eating disorder attached to an introductory letter, for example:

“Dear teacher/therapist/carer/friend/coach…..I am Autistic and experience ARFID. ARFID is an Eating Disorder. When you read the information below it will give you a better understanding of my behavior around food. I am just a normal kid. I just have some challenges around food at the moment. Thank you for understanding and helping me”

Depending on your loved one’s age and stage, it is okay to advocate for them and ask questions to see if the team are able to accommodate your unique person.

Alongside more general treatment ideas and recommendations, there are adaptions that can be made specifically to aid meal support that you might consider and discuss with your loved one and the treatment team. Remember, different things will work for different people depending on their experiences. These include:

• A simpler, predictable menu with menu items that don’t vary too much
• Cold food generally has less “smell” than hot food so that may work better
• It may be easier if the plate is not “messy” I.e. foods not touching
• Consider a “safe” back up meal in the event that the expected meal has had to change at last minute (preferred brand not available, wrong textured juice purchased).  The “safe” back up meal may avert elevated distress
• Distress tolerance tools like weighted blankets, ear plugs, essential oils, fidget toys, or mindful coloring can help to calm the person as they attempt their meal or even before the meal (cooking sounds can be stressful) and after (many sufferers report post meal to be the highest level of anxiety)
• Seating position can be important – ask your loved one what feels best
• Go at a pace that works for them and what their preferences are:   e.g. eating together or just being there whilst they eat.
• If they are sensitive to sound, consider headphones with their preferred music, podcast or white noise as it “drowns out” the eating disorder voice and other distractions.
• If there is heightened anxiety, you can try things like breathing exercises, learning to concentrate on body, bring attention to feet etc.
• At the end of the meal if anxiety has been high bring recovery items – cold face washer, iPad, weighted blanket or stuffed toy to calm and use a distraction activity to move the mind.
• Have your loved one write down “What helps me”!

When trying to eat at social outings (an important part of eating disorder recovery), remember that such outings can be exhausting for neurodivergent people. Socialising plus eating could be just too much so it is important to go at their pace and with strategies that will work for them. You could consider a corner table or booth type set up instead of the middle of the restaurant. Maybe even start with a picnic in the park.

Finally, we would like to acknowledge that there can be overlap between eating disorder behaviors and neurodivergence in all care and treatment settings which can create complexity and confusion at times. This may include things like: cognitive rigidity, attention to detail, sensory sensitivities, difficulty identifying emotions, feelings of overwhelm and exhaustion and poor social functioning.

The key to deciphering this may be to think about what were the constant traits prior to the eating disorder coming on board. This is important in supporting someone with a restrictive eating disorder particularly. Breaking rigidity and ED “rules” is a critical part of recovery in this area. As carers/supports, we assist them to do this as quickly as possible during treatment. We do not want to accommodate or enable the eating disorder’s “rules”. However, if suitable for your loved one, we may slow this process down and work with the individual traits more to enhance recovery.

As with all treatment/support – when things go wrong – reset.  When things go right – keep doing it! If you’re concerned, have a conversation with the treatment team and your loved one. There is no “correct” way, it is all a learning process and you know your loved one best.