
About a month ago, I connected with Ailidh Musgrave on LinkedIn.
Ailidh is a beautiful soul who is advocating for change. Change for those who have autism and are in eating disorder recovery. She has extensive experience in inpatient and outpatient care and believes comprehensive adjustments are needed to ensure a quick and effective recovery for autistic people receiving treatment.
I intend to help Ailidh spread her message as widely as possible in the future. Still, for now, she very kindly wrote a guest blog for Light Minds Collective on the reasonable adjustments that could be made to autistic people in anorexia recovery.
Please share this blog with as many health professionals as possible. I’d love to hear their feedback and would be happy to blog a follow-up with others' opinions, thoughts and ideas.
Let's make recovery possible for everyone!
The Importance of Reasonable Adjustments in Eating Disorder Treatment
"As an autistic young woman who experienced anorexia from the age of twelve to twenty-six, with nine inpatient admissions in that time, the most crucial and missed element of treating eating disorders is to work with everyone as an individual.
This means that any patient needs individualised care planning, but specifically, those with neurodivergence need reasonable adjustments to be made.
To reduce added sensory overwhelm, emotional dysregulation, avoidance and refusals, neurodivergent individuals may have specific needs that need to be met so that they feel more comfortable and capable of completing treatment.
Whether this is meal planning, mealtime, attending therapy and multi-disciplinary team meetings or feeling safe socially amongst peers, basic adaptations to the usual blanket rules in place in hospitals will make treatment that much more accessible and allow neurodivergent individuals to feel safer and more receptive to the programme.
Examples of reasonable adjustments:
Allowing flexibility for meal time depending on when meals and snacks have been at home.
Using specific cutlery and/or plates, cups and bowls that the service user prefers or finds easier to hold and eat from.
Extending meal time allowance if there is a sound reason: for example, I had delayed gastric emptying syndrome, which made me feel very full very quickly. I was only given half an hour to eat a meal and fifteen minutes for a snack, after which the food left would be replaced with a high-energy supplement drink or an NG tube feed if that was refused.
For quick context, it took me 162 minutes to digest a scrambled egg; at mealtimes, I could be expected to eat a sandwich, bag of crisps and a chocolate bar or four Weetabix and two slices of toast with peanut butter in thirty minutes.
Staff letting the service user know that their usual (for example) burger isn’t available and asking what replacement they would choose instead. A lot of autistic people like to have consistency in food. Knowing what to expect at a particular meal, what it will look and taste like and how it will be presented on the plate with the other elements - all these make the actual process of sitting down at the table to eat feel easier or at least safer.
Due to hypersensitivities, allowing a neurodivergent individual not to be restricted to three “dislikes”. In most eating disorder treatment pathways, this is a blanket rule where, at the beginning of treatment, you can pick three foods/drinks you will never eat/drink. Essentially, thereafter, you will be expected to eat/drink everything else. This is unreasonable when working with someone with neurodivergence who may not like the taste of things but also the smell, texture, sight and even sound of food and drinks. I have a phobia of orange squash and juice. I cannot even look at it without feeling very nauseous. I can’t be at the table with it, and I can smell a drop of it from across the room. In practical terms, this would then take up two of my allotted dislikes, leaving one remaining for the hundreds of other food and drinks, including ones I may have never tried and thus don’t know if they belong to the ‘dislike’ list.
If there is a way to make mealtimes easier that doesn’t follow the usual practice, accommodating this may be of real benefit to the service user, for example, reading, watching a TV show, listening to music, doing school work/work, etc. It can be very hard to sit and talk to others during a meal if the individual finds social situations and small talk anxiety-provoking. Sometimes, having self-soothe items at the table can help, like a teddy, fidget spinner, or ear defenders.
In the same way, the practice of locking people out of their rooms all day can be very stressful for someone who finds socialising a stressful experience, and if forced to do so, it can be detrimental to the rest of their recovery.
There may be specific ways the service user eats or certain rules that are unrelated to their eating disorder. To attempt to force this to change can have a very adverse reaction and consequence. Speak to their family and those who grew up with them to understand what behaviours and characteristics preceded the eating disorder and work with them and the service user to incorporate these into their care plan. For example, I always ate the crusts of sandwiches and pizza first. I also scraped off the toppings of my pizza to eat first because I liked the texture of the soggy pizza base. I would eat the filling of a pie first, again, because I like the pastry best. So, my behaviours that were done because I wanted to save my favourite bits to the end (my family all do this, and we call it the ‘ bombouche’ after what my Grandma used to say) were something I was told off for in hospital and deemed ‘anorexic’ behaviours.
I am sure that there are plenty of other reasonable adjustments that can be made for those going through eating disorder treatment because everyone is unique and has their struggles and ways they function best.
I recommend speaking to them to find out what can make their experience of treatment easier, what can make them feel safer and what can make them feel more receptive to treatment to give them the best chance at recovery."
My name is Ailidh Musgrave, I am an Expert by Experience; having had anorexia and multiple hospital admissions relating to this. I am also autistic.
Please feel free to contact me on LinkedIn if you want to learn more.
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