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Self-advocacy

Self-advocacy is very important for disabled people. It involves being able to identify your specific support needs, knowing your rights, asking for your support needs to be respected and accommodated, and standing your ground. To learn more about self-advocacy, click here.

Below, you will find some self-advocacy considerations and tools within the context of eating, feeding, and eating disorder care.

Neurodivergence, eating, and feeding

Identify your support needs and preferences

The support needs and preferences of neurodivergent people are varied and may differ from those of neurotypicals. This applies to many aspects of everyday life, including eating and feeding. There are a wide range of factors that can influence a neurodivergent person’s eating and feeding preferences and support needs. For example:
-    Exteroception (sensory processing of external, or environmental, sensory stimuli): specific food aversions and cravings, preference for foods to be separated on a place, preference for eating in an environment that is not too bright, preference for eating the same foods to ensure that textures and tastes are predictable, preference for eating at home and/or alone due to feeling overwhelmed by background noises (hyperacusis) and/or the sounds others make while eating (misophonia),

-    Proprioception (spatial awareness and perception of self): eating using specific cutlery (dyspraxia), eating while standing and/or walking rather than sitting, needing more time to finish eating and/or drinking (dysphagia),

-    Synaesthesia (mixing of the senses): avoiding or craving foods based on their colour or shape,

-    Interoception (sensory processing of internal bodily cues): eating many small meals throughout the day instead of the traditional framework (in case of early fullness/satiety), using alarms and reminders to eat (in case of low/inconsistent hunger signals), eating pre-made meals (in case of delayed fullness/satiety), 

-    Executive functioning differences (short-term memory, motivation, attention): using online platforms for grocery shopping, making lists of foods to buy, using meals and snacks that are easy to prepare or that do not require any preparation at all, needing distraction (e.g., tablet, book, crosswords) while eating,

-    Communication differences (double empathy problem): not making eye contact with others at the table, not engaging in small talk, sharing special interests.

As a neurodivergent person, it is important that you identify the different factors that influence your own eating and feeding experiences. Understanding how your neurodivergence impacts your eating and feeding is key. This way, you can explain it to your family members, carers, loved ones, or friends, and ensure that they understand, respect, and assist you in ways that promote your wellbeing.

In our society, there are a lot of norms and rules about eating and feeding. Many of these expectations are neuronormative as they do not take different ways of existing, such as in relation to neurodivergence, into consideration and can negatively impact a neurodivergent person’s relationship with food, eating, and feeding. For example, sitting still at a table, engaging in small talk, making eye contact, eating out of home, socialising, eating a wide variety of foods in the absence of urgent medical necessity, and not eating too fast or too slow. Therefore, it is important that you remain aware of your own unique neurodivergent traits and seek to have them understood and safely accommodated.
In addition, it should be noted that coercing or forcing an Autistic person to eat foods whose sensory properties (e.g., smell, taste, texture) are aversive may be experienced as traumatic and lead to food-related trauma (Kerns et al., 2022). 

 

Further readings:
1. Sensory modulation disorder symptoms in anorexia nervosa and bulimia nervosa: A pilot study

2. Interoception and disordered eating: A systematic review

3. Executive dysfunction in eating disorders: Relationship with clinical features

4. Eating Disorders and Neurodivergence: A Stepped Care Approach

5. The Correlation Between Neurodivergence and Eating Disorders

6. Signs of Neurodivergence in Eating Disorders

7. Insistence on sameness for food space appropriation

8. Preference to Eat Alone: Autistic Adults' Desire for Freedom of Choice for a Peaceful Space

9. Should we screen for misophonia in patients with eating disorders? A report of three cases

Community

Knowledge and self-awareness are empowering, but so are belongingness and peer support

Connecting with other members of your community can prove beneficial in terms of feeling understood, validated, and as though you belong. Being able to relate to others' experiences can be empowering and help with feelings of self-compassion too (Botha et al., 2022). There are several neurodivergent-led organisations in Australia that you can reach out to, such as Yellow Ladybugs and I CAN Network

In addition, Reframing Autism produces content for Autistic people that can be helpful. For example, they have created a resource that discusses tips for finding the right neurodiversity-affirming healthcare professional; click here for more information. Indeed, there are neurodiversity-affirming clinicians available that can provide eating disorder care. If you would be more comfortable engaging with a neurodiversity-affirming eating disorder clinician, it is a good idea to mention this to your referring practitioner (e.g., your GP). 

Sometimes, when you are not feeling well and your spoons are low, self-advocating can be challenging. There are disability advocacy organisations across the country that provide assistance and guide you through your self-advocacy journey. Click here to learn more about these organisations and find the one that is right for you.

In addition, the Council for Intellectual Disability, the Dyslexia Association, Developmental Coordination Disorder Australia, Amaze, the Tourette Syndrome Association of Australia, OCD AustraliaPathological Demand Avoidance Australia & New Zealand, and the ADHD Foundation Australia may be able to provide resources and recommend community peer support groups.

Neurodivergence and eating disorder care

Know your rights and stand your ground

You may want to create a specific neurodivergent support plan to give to members of your treatment team (e.g., GP, psychiatrist, psychologist, dietitian) as well as use in case of an hospital admission. Eating Disorders Queensland has developed an Eating Disorder Passport which allows you to describe and explain your support needs in writing. This can help you if you struggle with speaking and/or alexithymia and prevent you having to explain your circumstances many times over if you encounter several healthcare professionals. You can find more information about the Eating Disorder Passport here

Eating disorder treatments and therapies that are currently available do not necessarily suit neurodivergent people, even those deemed 'evidence based' or framed as the 'gold standard'. This is because they were not developed with a well-rounded and solid understanding of neurodivergent people’s support needs and preferences, and therefore, tend to enforce and promote neuronormativity (Blair, 2023;Field et al., 2023). In addition, there is emerging evidence suggesting that such treatments and therapies may cause harm and be experienced as traumatic by neurodivergent people (Babb et al., 2022; Brede et al., 2022). Hannah and Livia have written about this topic and you can find their stories in our blog (click here). Our podcast also features many neurodivergent people who shared their experiences of being patronised, gaslit, and ultimately harmed while receiving eating disorder care (click here). Harm that is induced by health-related treatments, including psychological ones, is called iatrogenic harm (McKay & Jensen-Doss, 2021). Unfortunately, little attention has been paid, so far, to the possibility that psychological treatments may cause harm and negatively impact long-term recovery prospects (Curran et al., 2019; Lilienfield, 2007Parry et al., 2018), particuarly in the context of neurodivergence (Dawson & Fletcher-Watson, 2022; Elwyn, 2023). Moreover, the inadequacy of mental healthcare more broadly in the context of neurodivergence has also been highlighted (Curnow et al., 2023; Mandy, 2022). This is why there is increased recognition of the importance of participatory research and care design (Keating, 2021; Papastavrou Brooks et al., 2023). Participatory initiatives involve empowering people with lived experience and allowing them to lead the process rather than be passive participants. To learn more about and find ways to engage in Autism participatory research in Australia, click here

Extensive adaptations to currently available eating disorder care pathways are required to ensure acceptability and safety in relation to neurodivergence. If you feel that an intervention format, pace, and/or goals do not take into consideration nor suit your unique neurodivergent traits, it is important that you explain this to your healthcare provider/s or try to find healthcare provider/s that understand your needs and personal circumstances better.

You may wish to request accommodations if you feel these would be helpful. For example, telehealth rather than in-person, using the chat function through telehealth rather than speaking, asking that the lights in the consulting room be dimmed or using sunglasses during the session, using fidget tools, using a noise-cancelling headset/ear plugs, sitting on the floor, not having to make eye contact if this feels uncomfortable or distressing, asking your healthcare provider to adapt their speaking speed to your processing needs, or using augmentative and alternative communication systems (AAC). To learn more about AAC, click here. You can also ask for appointment reminders and/or a written summary of your appointments to help you remember what was discussed and what the next steps are.

Hospitals and healthcare providers are legally required to accommodate disability support needs as stipulated by the Disability Discrimination Act (1992). To access the Disability Discrimination Act, click here. The duty of healthcare professionals to respect disabled people’s needs is called reasonable adjustments. To learn more about reasonable adjustments, click here


If you feel that your healthcare provider is not making reasonable adjustments in order to meet your needs, you can seek advice from a disability advocacy organisation (list available here) and/or file a complaint with the Australian Human Rights Commission. To learn more about filing a complaint with the AHRC, click here. You may also look into notifying the Australian Health Practitioner Regulation Agency of your concerns if appropriate. To learn more about sharing your concerns with AHPRA, click here. Please note that you will need to look into notifying the Health Care Complaints Commission if you are located in New South Wales or the Office of the Health Ombudsman if you are located in Queensland. 

If you feel safe and comfortable doing so, you could also raise your concerns about the eating disorder care you have received with the media, to push for systemic changes through public scrutiny:
- ABC
- SBS

SMH

Further readings:

1. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings

2. Improving the Sensory Environments of Mental Health in-patient Facilities for Autistic Children and Young People

3. What does it mean to be neurodiversity affirmative?

4. Navigating Eating Disorder Recovery As A Neurodivergent Individual

5. Autism and Eating Disorders from the Inside: My Story

6. Neurodiversity and Eating Disorders w/ the Chair of EDNA

7. What Does It Mean For a Therapist to Be Neurodiversity-Affirming?

8. What is neurodiversity affirming therapy?

9. Adapting Intuitive Eating for Neurodivergent People

This content was collaboratively created by board members Laurence, Ruth, and Maud. Find out more about them, click here.

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