When I was a teenager I developed an eating disorder. I didn't know. There was so much I didn't know, so much that no one knew. It was never recognized as an eating disorder, first because people were just beginning to get the idea that eating disorders existed and second because I did not fit the picture of someone with an eating disorder. No matter that my BMI was low and I ceased menstruating and restricted my eating, I did not have a concern about my body image and I still ate more than most college students. (I was on the soccer team and had a fast metabolism.) I was told by my doctor that my athletic life caused the amenorhea and he could put me on the pill to stimulate menses. (Which I didn't want to do, because unrecognized gender dysphoria) Eight years later in graduate school I tried to get into a university counseling center eating disorder group. They sent me away to individual counseling. I still do not know why and that counselor never really addressed the eating disorder. I reasoned if the eating disorder was really there, they would have done something about it. My eating disorder didn't check the right boxes.
Of course no one, including myself, understood that I was transgender or autistic because I didn't fit the picture for those identities either —not in the 1980s, and still not in 2020 for many.
Today, I see many trans autistic clients. Most of them have digestive tract issues and many have disordered eating. I'm sad and frustrated to say that the care for trans autistic people in the eating disorder field has not improved much since I was a teen or young adult. Outside of a growing recognition among some providers of the overlap of the experiences of transgender identity, autism, and eating disorders, the research is sparse, and treatment programs that are accessible for trans autistic people are just creeping into existence There is some movement in connecting the dots between the transgender experience and eating disorder, and I'll get to these resources soon. There is an understanding that autistic people often experience Avoidant Restrictive Food Intake Disorder (ARFID), which was added to the Diagnostic and Statistical Manual (DSM) in the last edition, and clinics are beginning to recognize that this requires some different treatment strategies.
My eating disorder had so much to do with being autistic, having a very sensitive and reactive digestive system, having a hard time tracking sensations in my mostly overwhelmed and partially dissociated system, feeling more comfortable eating alone than with others, and being very sensitive to some tastes, textures and smells. It also had to do with being uncomfortable with my female body, and not wanting it to develop more. This double trouble was topped off by a need for control, which was at least partly related to not having any control over all the issues related to my unrecognized autism and non-binary trans-masculine self.
What would have helped then? And what could help the many trans autistic folks who deal with similar disordered eating? Here's my list for professionals: 1. Listen and believe what trans autistic folks are telling you about themselves and their struggles with eating and digestion. 2. Find out what you can about what is happening in their digestive tract, and do what you can to reduce these symptoms. 3. Use trans-affirming care strategies (See: FEDUP) 4. In eating disorder programs, use autism-aware strategies. 5. Work to reduce trauma and build somatic skills for trans autistic people. 6. Do collaborative research with trans autistic folks to identify obstacles and supports in managing eating disorders and digestive problems. 7. Build a team and seek consultation.
If you are someone who deals with these issues, or you are trying to help someone who does: here are a few things I'm learning.
Find what is calming to the individual and endeavor to do these things before, during, and after eating. Build more strategies for calming the body and specifically the GI tract.
Get help from occupational therapists for and speech and language pathologists who work with swallowing to build on calming strategies.
Get GI specialist help to identify any GI disorders or disease.
Collaborate with individual: learn what foods work better and why, and build on that to increase nutrition.
Identify if any fears around contamination or poisoning have developed and gently and collaboratively work to reduce these fears (which may be reasonable human response to GI distress upon eating — how humans began to know whether a food was edible).
Get vitals checked and blood work done if weight drops low or other signs of malnutrition show up. (Consult PCP provider and/or Eating Disorder programs. If you are still concerned even though PCP does not refer you, contact Eating Disorder specialist.
Familiarize yourself with ARFID symptoms, and work with providers who understand ARFID.
Get support for gender dysphoria through affirmative gender care. See FEDUP and seek out gender care providers who have experience with eating disorders.
Don't make comments on how or what someone with ARFID or eating disorder eats or doesn't eat. If they always must have a certain food because they know it works, then that is good. (A positive comment or question might work, such as "It's good you've got that. Do you know what about it works? Maybe we can find some other things like it."
Find out whether eating together or eating separately works better for them. Identify ways eating together can work (for example, while listening to a story or everyone reading). Talking is often stressful or activating for autistic folks and may be distracting for ADD/ADHD folks and may interfere with eating, even when the individual is calmed by being near people they love.
Try to calm your own frustration, and the messages you were taught about eating (everything on the plate...) They are doing their best and are very sensitive to your frustrations and judgments. Work on these messages and feelings elsewhere and apologize when they leak or break through. If you don't do this, imagine what it's like to not be able to experience meals as enjoyable. Ask that others in your home and visitors also refrain from comments and nonverbal irritation.
Spend enjoyable non-food centered time with your family member if they want.
