By Avery
Before I get into the nitty gritty of life with neurodivergence and an eating disorder, let me preface with where I’m coming from…
I’m non-binary and live with chronic health issues (which doesn’t particularly factor in here, but definitely plays a part in my disorder and how it manifests). More relevant today: I’m autistic and recovering from atypical anorexia nervosa.
Autism and other forms of neurodivergence often come hand in hand with sensory issues. For the average person, most stimuli are easy enough to ignore, or work past. I can’t do that. Unpleasant sensory experiences cause the equivalent in my head of someone pulling the fire alarm. It’s loud, it’s intense, and it doesn’t stop until well after you’ve convinced yourself that everything is fine. This is unlike intrusive thoughts that come with disordered eating, in that they can’t be fixed or changed; they are intrinsic to my experience of the world, and I’ve had to learn to work around them.
When things are calm, and I have spare spoons (mental energy – see the spoon theory), I can tolerate more. But when I am stressed, foods outside my comfort zone are like eating glass. Needless to say, this complicates things a little when I’m already anxious about a meal, and this adds just another reason to avoid it.
I grew up in a household where you ate everything on your plate, no matter what. It led to some rather unpleasant meals, where I was expected to eat things that gave me headaches or made me feel physically ill. Needless to say, I did not like mealtimes even before my eating became disordered. Eventually, accommodations were made after many years of difficult meals, but I was constantly having those accommodations held over my head to guilt me for being ‘a problem’ or ‘difficult.’ Which brings me to offer this tip:
NEVER, and I do mean NEVER, blame someone with neurodivergence for atypical eating habits. If they’re problematic, work with them to find a solution that allows for health and minimal distress. If the habits aren’t problematic, then leave them alone.
As an adult, I’m more experimental, and can tolerate a wider range of foods than when I was little, with the key difference being that it’s on MY terms. I can choose when and where to explore, and cook things to give me the best chance of liking them. At the end of the day though, I’ll always go back to my staples and my comfort foods.
Again, “if it ain’t broke, don’t fix it.” On the other hand, it ain’t broke, that means that it is something I can work with. Foods that are good stimuli to me make eating a manageable task. I know I’m more likely to eat if I have hummus in the fridge, or that I can incentivize myself to take my vitamins if they’re gummies (vitamin tablets are foul and we all know it…)
Neurodivergence isn’t something to be fixed or cured, but a fundamental part of how our brains work, and it’s something to be worked in tandem with. A lot of what I learned, I learned from trial, error, and lived experience, which is understandably difficult to emulate from the outside. It can be hard, as family or friends of someone with an eating disorder, to know where to push and where to back off.
The short answer is: ask. Learn what their favourite foods are, or even just what foods are ‘easy foods’ and don’t cost a fortune in willpower to eat. Things that are reliable, often simple, and at the end of the day, something to eat.
One of my biggest tricks for myself is sauces. I know personally I can stomach a lot of unfamiliar foods if I can add aioli, and even with foods I like, it makes the experience better. Know what brand/flavour of sauce or topping someone enjoys, and use that. Sauces go with everything.
There is no magic fix; consideration of sensory sensitivity doesn’t miraculously make eating a breeze, but it does take away one key barrier between us and recovery.
Addendum: Poverty and scarcity will always make this harder; do what you can within your means, but please don’t feel guilty if you’re unable to accommodate your loved ones’ (or your own) needs to the fullest extent. Focus your efforts where they have the most impact, and seek out non-food ways to make eating a less stressful experience.
Thank you so very much Avery for providing this insight into the extra challenges of an eating disorder if one is neurodivergent. This will be so helpful for many families who are striving to help their loved one manage an eating disorder and move towards recovery.
Avery, thank you for echoing what worked to support our neurodivergent child into recovery. We supplied lots of what she could eat. As she has matured, like you, she now finds lots of ways to add in variety. Your story will resonate for many!
Our daughter was diagnosed with an eating disorder at 14 and with Autism at 31. Many a mistake was made in the intervening years because the treatment of one wasn’t informed by knowledge of the other, but that can’t be helped now. Now she does have the second diagnosis and articles like this are so helpful. Thank you.
Could you perhaps help me? My boyfriend is neurodivergent and he pukes up everything he eats, the only thing he admits to liking is a spicy popcorn. His stomach cramps at times and he’s getting a whole lot paler. But I don’t want to upset him.
Ry, I can only speak for myself but maybe try smoothies or soups? Try carnation breakfast or ensure blended with frozen bananas or ice cream. Great for getting vitamins and weight up. For whatever reason I find it MUCH easier to drink things on days that it is difficult to eat
Hi, I just wanted to add my thanks to you for posting this.
What I’m about to post may be moderated and I understand this as I do not wish to put anyone off seeking ED Tx but equally, I feel some practice issues must be called out.
My D is 26 and autistic but our local ED service showed no understanding of her difficulties as her fear response is to fawn and they were still stuck in the old fight or flight mindset. The autism diagnosis (age 15) preceded the ED (AN) diagnosis (age 18) and made perfect sense for so many reasons.
We knew nothing about ARFID at the time but looking back, yes this type of ED was present from birth as my D had NHS Immunologist diagnosed food allergies (milk, eggs, nuts) as a baby & weaning was a total nightmare because of taste/texture/smell related sensory issues. She never outgrew the allergies but with ongoing paediatric support (until age 16 automatic paediatric discharge) she learned to climb the allergy ladder I.e increase her tolerance level by having them included as cooked ingredients in some (but not al) other food items e.g cake.
It was pressure at school (a GCSE oral exam that she was too anxious to speak in) that caused her anxiety to spiral & the AN to develop. She attended a grammar school driven by results and which provided no real SEND support. We all knew her weight loss was a cry for help & linked to her poorly managed anxiety so we reached out and asked our GP for CAMHS support.
CAMHS were great but transfer to AMHS was a nightmare as it was at this point the ED service first became involved & we’ve never (before or since) encountered such arrogance with their one size fits all mindset. No meaningful help was offered I.e during her 10 week ED ‘treatment’ she had no access to a dietitian, no ED care plan, and no support was available for us to produce a weight restoration plan – they were intent on admitting her.
The Recovery and ED Teams were incredibly underhand in what they did: they increased her meds knowing this could induce a QT prolongation & used an unclear GP ECG result (which later was agreed had been normal) to orchestrate her admission to an acute ward without telling us of the admission plan! We were told to take her to an outpatient appointment on the ward, the idea being to see if support from a gastroenterologist could be offered. On arrival to the locked ward we discovered her bed was ready and plans were in place to admit her under the MHA if she didn’t agree.
She agreed as the gastroenterologist told her she needed daily ECGs over the weekend and that she could return home on Monday. She was there for 12 days (BMI15) whilst they looked for a SEDU bed and, despite losing nearly 4lbs in weight whilst on the ward (even though she was under 24/7 1:1 observation) no inpatient ECGs were carried out as (we later found out) they weren’t medically necessary. So, we were told she needed daily ECGs (but didn’t) and not told she’d be put under 1:1 observation or why this level of intrusion by an agency RMN had been arranged.
When she transferred to the OOA SEDU she was no longer under 1:1 observation and, as the SEDU claimed (falsely) they hadn’t been told of her food allergies, we had to provide all the dietary items she needed (dairy free items like milk, custard, margarine) during her 12 week treatment. Her autism sensory needs were not accommodated either and they tried to force her to eat known allergens even though (her IP medical records confirm) they noted she was having facial rashes when exposed to small amounts (e.g in cakes). The worst incident was them trying to force her to eat hallomi cheese by claiming it wasn’t dairy. As an informal adult patient with capacity she knew otherwise and rightly refused but can you imagine if she’d been treated under the MHA? It’s absurd that they did this when the RAST tests (arranged through the SEDU GP) confirmed them, that they sought no specialist allergist/immunologist consultation on her treatment, and there were no onsite A&E facilities (nearest A&E was 10+ miles away).
She literally ate her way out &, having had her request to join us on our UK family holiday refused (she was allowed 2 days plus travel) she self discharged after we returned (BMI 18) and decided to become vegan so she will not have to go through the ordeal of being disbelieved about her dairy allergies again.
So, the ED became more pronounced not less because of inappropriate IP Tx. She refused to have anything further to do with the local ED service and I just grit my teeth and continue to support her as best I can as we’d never trust them again either. We complained of course but they all closed ranks and lied through their teeth. The PHSO didn’t uphold our complaint either but they reviewed their decision and confirmed their investigation was flawed and their report cannot be relied on.
But, I’m so pleased to learn of the valuable work being done by the Peace Pathway project over recent years, I’m an avid fan of their work as I know credible research is required before NICE will produce clinical guidance on autism and/or allergy informed ED Tx.
Thanks for reading, and all the best x
My neurodivergent young adult daughter is severely bulimic. I am concerned that her life is in danger. She is afraid that most eating disorder treatment programs will not take her neurodivergence into account. Do you have any treatment recommendations?