Study of Eating Disorders in Autistic Females

 We recently came across this excellent blog post written by Shania Lorenz on the Mental Elf website summarising our research paper titled: ' It’s not that they don’t want to access the support . . . it’s the impact of the autism’ : The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals'. Check it out here:  https://www.nationalelfservice.net/mental-health/eating-disorders/eating-disorders-autism/ . They also have a range of other articles of interest with a focus on mental health. It's great to see the impact and reach of our work through blogs like this, and we recommend reading Shania's post for a well-written overview of our study. You can also access the full paper here for free:  https://journals.sagepub.com/doi/full/10.1177/1362361321991257 . Thank you Shania for your write-up!

  ‘It’s not that they don’t want to access the support . . . it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals Please Tweet us or email Charli ( babbc@cardiff.ac.uk ) 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 better understand autistic women’s experiences of accessing eating disorder services. Autistic women face barriers when accessing eating disorder services, often because the services are not autism-friendly. This study can help eating disorder services to be better equipped to support autistic service users. Why did we do this research? P revious research shows that around 20-30% of women with anorexia nervosa are autistic. However, researchers have found that current treatment options do not work as well for autistic people with an eating disorder as it doe

01/06/2021 Update: Thank you to everyone who expressed interest and took part in our study. We have had an incredible response and we look forward to sharing our study findings with you. We have decided to close recruitment for the time being, but please do let us know if you are interested in being involved in related research in the future.  You can contact James at UCL to express your interest via email: james.adamson.19@ucl.ac.uk .  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 not autistic. What will it involve? Once we can confirm that you meet th

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