By Ellen Ewing, F.E.A.S.T. Volunteer
My husband and I sat uncomfortably in the therapist’s comforting garret office with all the colorful, spangled pillows and fidget toys (which we had helped replenish since my daughter had broken practically every one). Our daughter was a year in to strong recovery from anorexia nervosa; we really didn’t have any issues with her eating or exhibiting behaviors. She herself stated she no longer had restricting thoughts and was so “over that.” She had gained and kept gaining weight; she’d started to grow and started her period for the first time at almost 17. Our check-ins with her eating disorder therapist and indeed the sessions she had with my daughter had never been much about direct eating disorder recovery issues (getting her to eat, dealing with distress over eating, addressing body image, etc.), but seemed to focus more on managing social interactions. After working with our daughter for almost a year, the therapist wanted to tell us she thought there was something else going on here. She suspected our daughter was on the autism spectrum.
Our daughter has always been quirky. She had friends but didn’t enjoy hanging out with groups of girls like most pre-teens. She had stopped going to and having sleepovers when pretty young because the other girls never slept; I remember one time when she insisted her friends leave our house at 11 because it was way past her 9:30 bedtime and they were not going to sleep! Our daughter’s therapist, while not specializing in autism, knew enough to ask some good questions about her behavior when she was very young to establish a pattern of thought rigidity, sensory overload breakdowns and challenges reading emotions and social cues.
After several weeks of multiple tests, at the very end of her junior year in high school, we got the results back. Our daughter was diagnosed with Level 1 ASD (Autism Spectrum Disorder), without intellectual or verbal impairment. (The older diagnosis for this level ASD is the likely more familiar Asperger’s Syndrome.) I remember reading our daughter a description of ASD before we got the results back and her saying, “Mom, this is what I have; it explains so much of what I struggled with especially starting in middle school.”
Autism is still frequently missed in girls, who have a much later average diagnosis age than boys, due to different presentation and girls’ abilities to “mask.” My daughter told the psychiatrist who evaluated her for ASD that she figured out when very young that people want you to look them in the eyes; she was always uncomfortable with this and so worked out that she could look at their chin or forehead and they wouldn’t know the difference.
There appears to be a higher than average instance of kids, especially girls, who have both anorexia nervosa (AN) and ASD; some research even estimates up to 20% although others indicate somewhere between 6-10%. There are also studies that identify many people with EDs exhibit some of the same black and white thinking, inability to identify emotions, etc. that those with ASD show. Regardless of what the overlap ends up being, as I look back on her illness, I think the ASD and the AN interacted with each other in some interesting and unique ways. The anxiety and depression she felt by feeling different than the other girls in middle school was likely a trigger to the AN. As she got deeper into the eating disorder, the emotional numbness caused by the malnutrition revealed itself to be a great coping mechanism for the ASD (except that it was killing her!). Group therapy and DBT, as well as CBT skills, didn’t really work with her. The lights and sounds and stress from the treatment center certainly added to the trauma she picked up there. (This trauma was effectively treated with EMDR about 6 months after she was back home.)
Finally, our daughter’s recovery was rather short by many standards. She was in strong recovery a year or so after diagnosis and then two years during which she finalized the eating disorder recovery and started learning how to manage the ASD. She went off to college on schedule this fall. I’ve started to wonder if her ASD may have actually helped her recovery quicker. Recently, I was reading some research on ASD and AN. A phrase in this research paper caught my eye, “people with autism who have anorexia nervosa may exhibit higher levels of treatment adherence compared with those with anorexia nervosa.” Remember the friends she sent home because they weren’t adhering to her bed timeline? I wonder if that singular focus got turned on her eating disorder to kick it out of the house early too.
I do believe there are kids with eating disorders where the ASD causes treatment to be less successful and strings out recovery. There is still much to be learned about this relationship, just a few of which are listed below:
- Is ASD part of eating disorder causation? Does having ASD put you at higher risk for AN? Or do ASD traits lend themselves to development of eating disorders? Or is there some other genetic link?
- How does treatment need to be adapted to better serve those with ASD?
- Are there protective elements of ASD for those with eating disorders? Are there some ASD traits that can be harnessed to improve treatment outcomes?
My hope is that we can use stories like my daughter’s to advance the need for further research into this fascinating connection.
For further reading:
I found this article and this research paper particularly useful in thinking about eating disorders and autism.