FAQ's

1. Why "SEDAF"?

"SEDAF" stands for Study of Eating Disorders in Autistic Females. We chose to use the word "females" to include all girls and women, regardless of age. We use identity-first language throughout, as research with the UK autistic community suggests that this is the preferred way of being addressed (Kenny et al., 2016).

2. Why is this area of research so important?

Researchers have estimated that more than 8,000 autistic females, aged 15 to 40, in the UK are currently living with anorexia nervosa (AN). This figure is based on prevalence rates of AN in women (Hoek & van Hoeken, 2003) and estimates that a fifth of people with AN meet the diagnostic criteria for autism spectrum disorder (Huke et al., 2013; Westwood, Mandy & Tchanturia, 2017). It has also been suggested that autistic women are less likely to benefit from current eating disorder treatment than those without autism (Wentz et al., 2009; Tchanturia, Larsson, and Adamson, 2016). Our research aims to better understand AN in autistic females, including why AN develops and persists. We also aim to identify how eating disorder services can be improved to become more accessible and helpful to autistic females.

3. Why are you studying autistic women, and not men?

There are a couple of reasons why our research is focusing on women. First, it is thought that autistic traits may present differently in females compared to males (Hiller, Young & Weber, 2014; Lai & Baron-Cohen 2015). For example, social camouflaging (whereby autistic people learn to hide their autistic traits to fit in) is more common in autistic women than men (Hull & Mandy, 2017), and autistic women tend to show fewer restrictive and repetitive behaviours than autistic men (Frazier et al., 2014). Thus, any complex interaction between autistic traits and AN behaviours may be different in females than males.

Second, prevalence rates of eating disorders, and in particular AN, are much higher in females than males (Bulik et al., 2006; Nagl et al., 2016). This may partly be because AN is under-recognised in men (Strother et al., 2012). In order to conduct meaningful research, it is important to recruit a sufficient number of participants. Recruiting sufficient numbers of autistic males with AN is not feasible within the timescale of the current project. These two points taken together led us to focus on autistic females with AN.

4. Do you offer support for autistic females with eating disorders?

We hope that our research will help to inform and improve services available to autistic people with eating disorders. However, we ourselves are unable to provide individual support. We do have some suggestions of appropriate helplines and organisations that specialise in supporting autism, mental health eating disorders:

Beat Eating Disorders (Eating Disorder charity): 
https://www.beateatingdisorders.org.uk/
0808 801 0677 (Adult helpline 18+)
0808 801 0711 (Youth helpline)

National Autistic Society (Autism charity):
http://www.autism.org.uk/
0808 800 4104

Mind (Mental health charity):
https://www.mind.org.uk/
0300 123 3393

Samaritans (24-hour support):
https://www.samaritans.org/
116 123

References

Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal ofAutism and Developmental Disorders, 46(10), 3281-3294.

Bulik, C. M., Sullivan, P. F., Tozzi, F., Furberg, H., Lichtenstein, P., & Pedersen, N. L. (2006). Prevalence, heritability, and prospective risk factors for anorexia nervosa. Archives ofGeneral Psychiatry, 63(3), 305-312.

Frazier, T. W., Georgiades, S., Bishop, S. L., & Hardan, A. Y. (2014). Behavioral and cognitive characteristics of females and males with autism in the Simons Simplex Collection. Journal of the American Academy of Child & Adolescent Psychiatry, 53(3), 329-340.

Hiller, R. M., Young, R. L., & Weber, N. (2014). Sex differences in autism spectrum disorder based on DSM-5 criteria: evidence from clinician and teacher reporting. Journal of Abnormal Child Psychology, 42(8), 1381-1393.

Hoek, H. W., & Van Hoeken, D. (2003). Review of the prevalence and incidence of eating disorders. International Journal of Eating Disorders, 34(4), 383-396.

Huke, V., Turk, J., Saeidi, S., Kent, A., & Morgan, J. F. (2013). Autism spectrum disorders in eating disorder populations: a systematic review. European Eating Disorders Review, 21(5), 345-351.

Hull, L., & Mandy, W. (2017). Protective effect or missed diagnosis? Females with autism spectrum disorder. Future Neurology, 12(3), 159-169.

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442-462.

Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027.

Nagl, M., Jacobi, C., Paul, M., Beesdo-Baum, K., Höfler, M., Lieb, R., & Wittchen, H. U. (2016). Prevalence, incidence, and natural course of anorexia and bulimia nervosa among adolescents and young adults. European Child & Adolescent Psychiatry, 25(8), 903-918.

Strother, E., Lemberg, R., Stanford, S. C., & Turberville, D. (2012). Eating disorders in men: underdiagnosed, undertreated, and misunderstood. Eating Disorders, 20(5), 346-355.

Tchanturia, K., Larsson, E., & Adamson, J. (2016). How anorexia nervosa patients with high and low autistic traits respond to group Cognitive Remediation Therapy. BMC Psychiatry, 16(1), 334.

Wentz, E., Gillberg, I. C., Anckarsäter, H., Gillberg, C., & Råstam, M. (2009). Adolescent-onset anorexia nervosa: 18-year outcome. The British Journal of Psychiatry, 194(2), 168-174.

Westwood, H., Mandy, W., & Tchanturia, K. (2017). Clinical evaluation of autistic symptoms in women with anorexia nervosa. Molecular Autism, 8, 12.