Because of this complex relationship, carers can have some unique challenges when supporting an autistic person with an eating disorder. Carer’s may struggle with communication and trying to have a conversation with their person. Particularly when opening a dialogue around emotions, as an autistic person with an ED can have alexithymia, that is, difficulty in identifying and describing their own emotions. From a cognitive perspective, carer’s may notice that their person has trouble seeing the bigger picture, shifting tasks, needing additional time to process information, as well as some potential working memory challenges.
There can be a unique interplay between autism and avoidant/restrictive food intake disorder (ARFID). With ARFID, a person may avoid and restrict due to one of three reasons: a lack of interest in food or eating, an aversion to the sensory aspects of certain foods, or a fear of negative consequences from eating. Because of this, there can be more specific challenges for carers, such as helping your person to try new foods.
What are the Challenges?
In this session of Conversations with Carers, carer’s spoke about their experience supporting an autistic person with an ED. Some of the main challenges include:
- Receiving treatment/support for both autism and an eating disorder at the same time
- Difficulties socialising with noise and crowds
- Not a ‘one size fits all’ approach for treatment
- Finding the label of ‘autistic’ overwhelming
- Difficulties receiving an assessment for autism
- For ARFID, increasing the quantity of food
- Bullying as a trigger for an eating disorder
- Transitioning between or being discharged from care-teams
- Deciphering which behaviours are driven by the eating disorder
What’s Helpful?
A helpful piece of advice from carers is to think about what eating disorder thoughts and behaviours your person has and then try to separate them from their autistic expression. For example, ask your person what drives a specific behaviour, and whether a facet of control is involved. As autistic behaviours can contribute to a person’s strength and self-compassion, in contrast to eating disorder behaviours, understanding the difference between them can be very valuable.
When trying to create a path forward, and establish regular eating with your person, carers recommend thinking backwards. For instance, ask yourself, “what did they eat before the eating disorder?” This can be useful when deciding on a meal plan with your person. Remember, take things day by day, and be open to making adjustments.
If you or your person is finding the label of ‘Autism’ overwhelming, carers highlight the benefit of taking a step back and looking at the bigger picture. Although this label can be helpful in understanding how your person experiences their world, it does not change who they are. Use a diagnosis as a means to better understand your person.
When supporting a person with ARFID, try to remember that your person isn’t just a ‘picky eater.’ Carers recommend to first focus on increasing the volume of ‘safe’ foods and then try to expand the variety of food your person eats. If your person is struggling with certain foods, a helpful tip would be to try food chaining. This means, starting with a food your person feels comfortable eating, and then taking small steps and making slight changes to help your person slowly try a new food. Remember, every step forward is progress.
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