A new paper regarding autistic women and eating disorders has been published in the Journal of Autism and Developmental Disorders entitled ““For me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women”. The study was conducted and written by Janina Brede, Charli Babb, Catherine Jones, Mair Elliott, Cathy Zanker, Kate Tchanturia, Lucy Serpell, John Fox, Will Mandy. To read the paper in full, please click here.
Before going any further, I would like to preface my post with the following:
- This is the first time I have read and analysed a published paper outside my university studies. I am still finding my feet, and I would be grateful for any feedback.
- I am not the expert here. I have purely read the paper and extracted what I feel are the most relevant points for those who are either autistic themselves, or have a loved-one who is autistic, and may have an eating disorder.
- My aim is to present the findings in an easy to read format to make the information accessible to everyone. I have added page numbers so you can do further reading if you would like (or so you can check you agree with my interpretation).
- This is not something I am being graded on, and is for information only. Therefore, I have not used any referencing models and have just inserted quotation marks for direct quotes, and added page numbers at the end of each point.
If you are able, I would always suggest you read papers in full. However, for those who prefer a bullet point list of findings, please see below:
Method: Qualitative research design, 44 semi-structured interviews and Thematic Analysis to identify patterns/meaning (p. 1).
Participants: 15 autistic women, 13 parents of autistic women, 16 healthcare professionals with relevant experience.
- There is an over-representation of autistic women in treatment for Anorexia Nervosa (p. 1)
- This study has “the potential to inform treatment adaptations following empirical testing” (p. 1)
- Past studies have shown that 20-35% of women with Anorexia Nervosa meet the criteria for autism diagnosis (p. 2)
- These autism prevalence rates are still high, even after the women have recovered from Anorexia Nervosa, and therefore it should not be assumed that Anorexia Nervosa mimics autism (p. 2)
- Participants’ autistic traits were present in childhood, and predate their eating disorder (p. 2)
- Current treatment strategies have worse outcomes for autistic women and low recovery rates (p. 2)
- There is a lack of knowledge on the overlap between the two conditions, which contributes to the poor outcomes (p. 2)
- Studies of the associations between Anorexia Nervosa and autism suggest that “autistic traits may exacerbate factors that maintain the eating disorder rather than cause the eating disorder directly” (p. 2)
- In a 2019 study by Kinnaird et al participants felt that “need for control, sensory difficulties, social confusion, organisational problems surrounding cooking and food shopping, exercise as a method of stimulation, and the eating disorder acting as a special interest” motivated the eating disorder more than typical motivations seen in non-autistic women, such as weight loss and body image issues (p. 3)
- All participants had been seen by mental health services for their eating disorders and other mental health conditions before being diagnosed as autistic (p. 4)
- Sensory overload seems to affect eating behaviour, “with some women seemingly using the effect of starvation on their body to numb these sensations” (p. 6)
- Food texture and mixing of food and other food-specific sensory sensitivities (smell, taste, smell, temperature) contributes to restrictive eating (p. 6)
- Sensory issues contribute to restriction more-so than calorie/fat content which is “distinct from other women with [Anorexia Nervosa]” (p. 6)
- Sensory issues around food were reported to have been present from early childhood (p. 7)
- These issues continue to impact on eating, even in those participants who have recovered from Anorexia Nervosa (p. 7)
- Professionals in the study feel there is a crossover between Anorexia Nervosa in autistic patients, and Avoidant/Restrictive Food Intake Disorder (p. 7)
- Some participants reported that they restricted eating as internal body sensations such as bloating and the feeling of digestion are distressing (p. 7)
- Some report issues with interoception playing a role, either missing meals because they did not feel hungry, or not recognising when they were full and the subsequent uncomfortable feeling resulting in restricting future food intake (p. 7)
- Interoception difficulties present a challenge in overcoming eating disorders as for some participants they cannot “regulate their eating routine without relying on external cues” (p. 7)
- Restrictive eating was reported as a coping strategy for social difficulties to “distract from or numb consequent emotions” (pp. 7-8)
- Avoidance of social situations surrounding food, e.g. avoiding the canteen in school, has been reported as the first stage of food restriction (p. 8)
- Difficulties with a sense of self and/or identity contributed to eating disorders – they either provided the identity or gave the autistic woman a focus (p. 8)
- Some women concluded that their weight and shape was the reason they did not fit in, contributing to the eating disorder (p. 8)
- “Most autistic women stressed that weight loss was not the initial aim of their [eating disorder] behaviour, but rather a secondary and unintentional consequence” (p. 8)
- Autistic women may use food restriction and eating disorders as a distraction, or to numb themselves, from emotions they are unable to understand or control (p. 9)
- Without alternative coping strategies for emotional regulation, autistic women found stopping their disordered eating behaviours “one of the greatest challenges in recovery” (p. 9)
- Rigid thinking contributes to the development of rules around food (p. 9)
- Advice heard in public health announcements and in healthy eating classes in school such as fat being bad for you prompted the initiation of rigid rules around eating and the start of the eating disorder (p. 10)
- For some autistic women, the disordered eating behaviours become their ‘special interest’ (p. 10)
- Need for predictability and control contribute to the eating disorder – food intake is something they can control (p. 10)
- There needs to be an awareness in the potential difference in presentation of eating disorders between autistic women and the general population (p. 12)
- Differences in communication and sensory sensitivities can cause difficulties for autistic women in engaging in treatment (p. 12)
- The study focused on autistic women, therefore the relationship between Anorexia Nervosa and autism may be different for autistic men and non-binary autistics (p. 13)
- All women in the study received their autism diagnoses in adulthood – being an undiagnosed autistic is associated with the development of mental health difficulties (p. 13)
- It is unclear whether an earlier autism diagnosis and support could have prevented the development or worsening of an eating disorder (p. 14)
- Further research is needed to fully explore the “nature of [Anorexia Nervosa] in autism” (p. 14)
I hope this has been a helpful and accessible breakdown of the paper. I think it is clear that more investigation into the differences in presentation of Anorexia Nervosa (and other eating disorders) in the autistic population is warranted. I hope that professionals use this information to develop new treatment protocols which provide greater recovery rates than those currently used.