Many Autistic people have openly shared their struggles with body image and eating disorders (take a look at our Autism Acceptance Month #NEDAchat recap for reference), but their unique issues around food still tend to be misunderstood or outright dismissed by professionals.
As more Autistic people—especially women—are finally being identified and diagnosed, it is vital that professionals in the eating disorders field are aware of how to properly treat this underserved population. I had the chance to speak with Sharon daVanport, an eating disorder survivor and the Executive Director of Autism Women’s Network, about stereotypes that affect the Autistic community, sensory issues around food, and her personal experience with an eating disorder diagnosis.
Diana Denza: There still seems to be a lack of understanding among professionals about how autism affects women. How much do gender stereotypes prohibit women from getting an autism diagnosis?
Sharon daVanport: This is an ongoing struggle. Gender and societal stereotypes constantly create barriers with respect to girls and women getting a correct diagnosis. Most autism research has historically been centered around Autistic boy/men. In turn, we see the results of gender based discrimination causing not only misdiagnoses for girls and women, but also denying them the supports they need.
DD: Research has shown that some women and girls with certain eating disorders, especially anorexia and ARFID, display Autistic traits. What role can eating disorder treatment professionals play in recognizing these traits and referring these women for assessments?
SDV: Eating disorders professionals are in a unique position to recognize the women and girls who are showing traits that might point to being Autistic. It’s important that they familiarize themselves with the information discovered and take advantage of being one step ahead of distinguishing the girls and women who would benefit from further autism assessment.
DD: Is there anything you wish treatment professionals would have done differently after you were diagnosed with anorexia?
SDV: Oh, so many wishes! For starters, I was diagnosed with anorexia at the age of 17 because of extreme low body weight and loss of appetite (not eating). Truth is, I’d been underweight for most of my life, and rarely ate at all, but it was never because I wanted to lose weight. In fact, I was teased and bullied as a child because of my low body weight, and this caused me to desperately want to eat and gain weight. I carried a lot of shame around my body image and inability to maintain a healthy weight. I tried explaining to the doctor how I was unable to tolerate odors and textures of food, but he viewed my explanation as an excuse and accused me of being in denial.
I recall feeling helpless because I wanted to eat, but my senses were completely overwhelmed by most foods. I occasionally experienced brief intervals when I could tolerate a few food textures and smells, but it wasn’t long enough to gain weight.
It wasn’t until I became pregnant with my first child that I finally felt like someone would help me obtain nutrition (for the sake of the baby) because I developed hyperemesis gravidarum. Once my electrolytes were balanced I slowly regained a light appetite. Finally, in the last month of my pregnancy I began to crave a variety of foods and that was the beginning of my recovery.
I seriously wish my doctor hadn’t dismissed my explanation as an excuse without looking into my situation. How hard would it have been for him to listen to what I was repeatedly saying about my sensory challenges with food?
DD: Can you tell us more about sensory issues and how they affect eating behaviors?
SDV: Sensory issues have a variety of effects on eating behaviors. I personally have Autistic friends (as well as myself) who stim with food. The stim is different for everyone. For some, the actual act of eating a specific food provides emotional comfort *Example: eating sunflower seeds which are still in the shell. It’s the repeated act of removing the seed from the shell that becomes the stim.
For others, the comforting stim is in the texture of various foods, and they find that they gravitate towards these foods daily (sometimes several times throughout the day).
Still others, like myself, are challenged by many food textures and odors, thus causing their inability to eat many foods.
More often than not, I’ve witnessed most Autistic people (including myself) experience a combination of all or some of these varied eating behaviors. Many times, it leads a lot of us towards eating the same meals every day for weeks, or months, and even years.
DD: What would you ideally like to see happen in the eating disorders field regarding education around the needs of Autistic clients?
SDV: I’d like to see eating disorders professionals work directly with Autistic people in order to learn about our unique sensory sensitivities, as well as our proclivity toward intense focus interests, in hopes of further understanding how these traits can better inform the eating disorders field.
In addition, I’d like to see the initial research findings which connected specific eating disorders to Autistic traits expanded upon. Lastly, there’s a huge need for more eating disorders research specific to autism in general.
DD: Are there resources that might be helpful for those who work with eating disorders to educate themselves on autism?
SDV: It’s important for those who work in the eating disorders field to reach out to Autistic people in order to learn about autism. There are a lot of great Autistic bloggers in our community, and they can always visit the Autism Women’s Network website for more information.
DD: April can be a stressful month for many Autistic people due to misinformation about autism and well-meant but patronizing “awareness” efforts. How do you like to take care of yourself?
SDV: I make a point to limit my overall online networking in April. I already find networking sites like Facebook to be overwhelming, but even more so in April. I plan ahead, and I lose myself in various activities like walking, reading, and Netflix marathons. Most of all, I don’t think twice about setting clear boundaries in order to make sure I’m not heading toward burnout.
In closing, I’d like to send a solidarity shout out to my Autistic community. Hang in there, April is almost over!
DD: Is there anything else we should know?
SDV: As eating disorders professionals begin to do more research on this topic, it’s extremely important for them to keep a few things in mind:
First, as they see patterns emerge between certain types of eating challenges for Autistic people, it might be easy to lean towards lumping all of us into one or two categories because we’re presenting with similar challenges with food. However, this is where professionals oftentimes lose so many of us in providing successful outcomes.
This is the time when eating disorders professionals must remember that Autistic people are individuals. We are not all the same, and even though we may share many traits due to the shared experience of autism, it does not mean that we will all respond to the same supports.
Too often, Autistic people are lumped into one category and treated like cookie-cutter replicas of one another. Eating disorders professionals have a great opportunity to go into this research armed with this appreciation.
The food choices that work for me may not work for someone who presents with similar food challenges. I have many Autistic friends who share a lot of my experiences with food related sensory sensitivities, but their success is found in other ways which have little resemblance to the way I support myself.
Bottom line, yes, patterns are important, and they will provide researchers with information about how they can assist Autistic people with many of our experiences. However, the key to successful outcomes will always be found in the individual approach.