Study of Eating Disorders in Autistic Females

Our study on autism and restrictive eating disorders is now back up and running - and remote!  Earlier this year, we had to make the decision to pause our study as it involved seeing participants face- to-face. Behind the scenes, we have now worked to move the study to an online format so that it can be done completely remotely. If you are interested in being involved in this, please get in touch with James at UCL ( james.adamson.19@ucl.ac.uk ) . See below for more details and for eligibility to take part. Who can take part?   We are looking for participants who meet one of the three criteria below: (1)  Autistic women  (aged 18+) who are diagnosed and currently living with a restrictive eating disorder  (Anorexia Nervosa, Atypical Anorexia or ARFID) (2)  Autistic women  (aged 18+) who are  not diagnosed with an eating disorder (3)  Women  (aged 18+) who are diagnosed and currently living with a restrictive eating disorder  (Anorexia Nervosa, Atypical Anorexia or ARFID) and who are no

Our collaborator and adviser Mair Elliott has written a reflection on her experience with and the importance of participatory research: A lot of my personal life has been taken up by illness, trapped in a state of being unable to eat properly. An eating disorder does not only ruin your body, it ruins your whole life. When even professional help doesn’t make a difference, it can feel overwhelmingly lonely and scary. I am lucky to have gotten my eating disorder into a manageable state; this has allowed me to use my experience to inform this research project into the links between autism and anorexia nervosa. I wanted to use the negative experiences I’ve had for something positive. Being a lay person on this research team allowed me to do that. Contributing to research than may help others be better informed, receive better treatment and care, and ultimately recover from their own eating difficulties, is deeply rewarding. Knowing how my own eating difficulties manifested and

SEDAF's collaborator and adviser Cathy has written a commentary summarising  our latest publication  and highlighting the importance and implications of the project: A possible link between Autism and restrictive eating disorders has been recognised for over 30 years. Recently, research investigating this link has increased and suggests that 20-35% of women with a diagnosis of Anorexia Nervosa (AN) are also autistic. Furthermore, it is possible that in autistic women with an AN diagnosis, the behaviours that comprise this eating disorder (ED) are in part driven by autistic traits. The present study explored the thinking and emotions of autistic women with a diagnosis of AN through in-depth interviews. In addition, parents of such women and their healthcare providers were interviewed to gain a more thorough understanding of how autistic women experience restrictive EDs. Collectively, these interviews identified specific themes within this group of autistic women which rel

We are very pleased to share our first research paper ' “For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women ', which has been published in the Journal of Autism and Developmental Disorders last week. It is free for anyone to access. Here is a link to the PDF version of the article: rdcu.be/b3y24   We have also written a lay summary of the study to make the findings even more accessible.  We would like to thank everyone who has taken part in this research - your contributions have been invaluable!

“For me, the anorexia is just a symptom, and the cause is the autism” – Investigating restrictive eating disorders in autistic women. Ple ase get  email / Tweet  us if you would like to receive a PDF version of this summary. You can also read the full research article  here .   Key points: This research study aimed to gain a better understanding of how Anorexia Nervosa develops and persists in autistic women. There seem to be autism-specific mechanisms that cause and maintain eating difficulties in autistic individuals. The findings of this study directly benefit affected individuals by raising awareness and helping eating disorder services to improve the way they treat autistic individuals. Why did we do this research? Anorexia Nervosa is an eating disorder, characterised by low body weight due to restricted calorie intake. Anorexia can have serious consequences for the health and quality of life of affected individuals. Previous research has

*EDIT 30/03/20* Due to the Covid-19 pandemic, we have decided to pause recruitment until the end of June. This decision will be reviewed at the end of May. We hope to be up and running as usual after this, when it is safe to see participants in person again. The SEDAF team is looking for women to take part in our exciting new study on autism and restrictive eating disorders.

On 27th June, SEDAF members Janina, Charli, Will and Catherine attended Autistica's second Discover conference at Reading University. The conference covered a wide range of topics, from autism as identity to gender and sexuality; from sensory processing to mental health and suicide. From left to right: Charli, Janina, Will and Catherine SEDAF's Catherine Jones chaired the "Sensory Processing" stream in the morning alongside Damian Milton. In the afternoon, Will Mandy chaired the "Sleeping, Eating and Movement" stream with Fiona Ferris. Charli Babb and Janina Brede presented SEDAF research in a 15 minute presentation, focusing on some preliminary findings about the eating disorder service experiences of autistic women, from the perspectives of autistic women themselves, parents and healthcare professionals.  Janina and Charli presenting some results from SEDAF's interview study The presentation was well-received and Janina and Charli were