Supporting an autistic loved one with an eating disorder
Our guest contributor shares a lived experience perspective on how families and loved ones of autistic individuals with eating disorders can navigate the complexities of offering support.
Watching a loved one struggle with an eating disorder can be really hard. Eating disorders are very complicated mental illnesses, that become even harder to navigate with co-occurring neurodivergences, such as autism. Often, families of individuals with eating disorders want to help, but don’t know how. They might feel that they don’t know what to say or do and inadvertently make things worse.
Struggling with an eating disorder not only makes you feel isolated and out of control, but it can also be a really alienating experience for everyone around you too. A lot of families spend time together when they share meals, but this can often be the hardest time of day for us. Having a family conversation over dinner can end up feeling like an interrogation, rather than a time where you can relax and be with those who love you. Loved ones may also feel tempted to ask lots of questions about how much you have eaten, or if you’ve followed your meal plan. Most of the time they do this because they care, but drawing attention to your struggles can be hard when you just want to feel ‘normal’ for a few hours.
Instead, one of the most helpful things family members can do is to offer support in the form of distraction. Sometimes I struggle with feeling pressured to choose distractions that are ‘productive,’ and when others judge you for the distractions you choose it makes getting through the meal even harder. Being able to read a book, scroll through Tumblr or watch YouTube can dull the unhelpful thoughts and help to remind me that there is more to life than struggling with food.
For most people, being autistic might be a contributing factor to their eating disorder, but it isn’t the sole cause.
Loved ones have to be strict when supporting someone who has an eating disorder, but patience is also really important. Sometimes, the ways that people struggling with food can act can be frustrating. Sometimes we get angry and we may feel like we need to use certain behaviours, but often this is because we feel like we have no choice—we aren’t deliberately trying to be annoying or make things harder for everyone else. Being made to feel guilty about this can lead to a downward spiral and make things worse. In the past, I have acted in ways that I didn’t want to, but feeling punished for these actions made an already isolating experience feel even worse (as well as impacting my relationships away from the dinner table).
For autistic people, eating disorders can be triggered by sensory sensitivities linked to food. This can make it difficult to differentiate between what is an eating disorder-related thought or behaviour, and what is an autism-related sensory difference. It can also be hard to explain this to those around you, leading to people thinking that you are avoiding food entirely, when in reality the issue is that the texture of the food specifically is triggering. Personally, I find it draining and confusing to cope with the texture of something being different to what I had expected. It can reduce my tolerance to food for the rest of the day, as I lose the energy to adapt to the different senses which are activated when eating. Involving Autistic people in choosing or planning meals is something that can help us accommodate our sensory sensitivities.
However, even though we might have sensory sensitivities that intersect with eating disorders, it is dangerous to presume that all disordered eating experienced by autistic individuals is always sensory-related. Sometimes people believe that my mental health struggles are ‘explained by’ the fact I am autistic, which is really invalidating. For most people, being autistic might be a contributing factor to their eating disorder, but it isn’t the sole cause.
Eating disorders can strip you of so much, including your independence. For this reason it can be incredibly powerful to help a loved one struggling with an eating disorder to remember what makes them happy; to remind them that their life isn’t dictated by their struggles. Whilst loved ones need to enforce positive behaviours in order to promote recovery, in my lived experience what I really wanted was for my parents to just be my parents, not to act like nurses. Sometimes the best thing when you are upset can just be having a hug from your mum.
It is important to remember that neurodivergent (and neurotypical) individuals struggling with eating disorders are still human, and that regardless of the behaviours or presentations you might see, we still want to be treated like the same person you love.
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