Has anyone else struggled with an eating disorder?

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How I found out about being on the autism spectrum was doing research on the connection between eating disorders and being on the autism spectrum. I had a lot of trouble getting treatment for my eating disorder because I was an undiagnosed aspie. My obsessions with food, my body, and numbers were never able to be treated with typical ED therapy. My eating disorder became one of my special interests, I had a very strict repetitive routine, a small list of foods i would eat, body checks etc. I am wondering if anyone else has dealt with the same or similar things, and if you ever found a therapist or caregiver that could understand the impact that being on the spectrum and having an eating disorder.

I have bulimia. It hasn't caused me any real harm yet. But it did make one of my teeth get rotten, so I had to get a prosthetic tooth.

Definitely had an eating disorder. Never got treatment specifically for it. Biiiiig mistake on my part, but I'm just so embarrassed of it, and I feel like I've "gotten over it," if that's possible.

I had anorexia when I was 13. I couldn't go to an ED clinic because I was too young, and doctors at the hospital were very rude, eyed me up and down, and didn't understand autism.

But it is true. I call it rituals, rules and routines, or basically, the 3 Rs.

Today, I'm not underweight anymore, and I'm not doing the same behavior as back then, but I still have temptations as it helps with stress, but I know it's harmful.

My special interest is now birds, to the point to where I HAVE to look outside for those cuties, and family members are apparently confused by it.

Yes.

To the Bird Person:

At least you’re not out getting drunk or high or something. I’d be proud to have a birdwatcher daughter.

I think very few people could understand what it is like having autism and an eating disorder, unless they already have lots of experience in both. Which is unlikely and would be like finding a needle in a haystack.

Finding a compassionate and experienced therapist who is willing to learn about your specific difficulties would be easier. Just finding a half decent therapist can be a task and a half.

I think you can tell within a few sessions if a therapist is listening deeply to your issues and not trying to tell you who or what you are. The good ones leave you feeling heard and understood.

That’s interesting. Since I was a child around 12 and up, I restricted my intake of food do much so much so that I would pass out at gym. I never thought of connecting it with autism. I too would make a list and obsess over exercise and body image. I was in and out of therapy but it wasn’t until I was around 23 that I learned about aspergers (autism) and finally got a diagnosis. Your reasons for your eating disorder may be different than mine but it is interesting. Later in life I completely flipped to a binge eater. Since then weight has been an issue with me. But that obsessive nature still takes on in other areas of my life. I personally can’t confirm if this has to do with autism since there are so many various factors and variations of eating disorders even among Neurotypicals.

I think it would be interesting to know how much of it an impact it would be for someone on the spectrum. It’s very difficult in my area to find therapists that specialize or are experts on autism. Usually the majority of them I find are geared toward children.

I have BED (Binge Eating Disorder). I have struggled with it since I was a little kid.

I had an eating disorder (age 12-15) and just as you write... it was like a special interest, I knew the calories in everything and still do and had extremely set routines. Running 15 km every single morning, boiling three strands of spaghetti every day to leave in the sink to cover my tracks.... In many ways my eating disorder was perfect coping strategy and special interest combo. I then moved out of home when I was 15 and I really didn't need it as a coping strategy when I was living alone and I literally got better overnight and have never had any form of relapse apart from in my first pregnancy when I became slightly obsessive wth food and what could be damaging in pregnancy.....my eating disorder was very much tied to a hierarchy in my mind of mind over body which was only really resolved for me in pregnancy and then in childbirth when I had an absolutely euphoric no- meds no- Gas and air birth experience and became fairly impressed with my body and its immense power.

Ps. I am undiagnosed but believe I have many aspie traits.

Mine was the same. I was terrified of weakness. I grew up being told I was spineless. I was told it so often I developed a pathological fear of not being strong enough. Denying myself food reassured me I wasn’t weak and I found comfort in it.

I had an eating disorder in adult hood and it was due to body image issues and I feared getting fat. I never got therapy for it. My mom thinks my eating disorder was about something I had control over, my weight, because I had no control over anything else in my life. Before I had behavior and I was trying to be ODD to get my way and that backfired so I went after our pet that wouldn't quit pissing in the house and he died from slipping on some ice and hitting my mom's car and then I moved onto self harm, eating disorder. My parents never tried to fix the underlining issue and my mom just acted like it was all just behavior. Only thing she did was have me see a mental health therapist which my school counselor thought would be a waste of money.

I developed Bulimia during the latter years of my college; by the time I was almost ready for university my habits of control had changed however: I'd cut out the hideous starve-binge-purge patterns of Bulimia for starve-starve-exercise-starve! My weight, as I recall, never changed much during the Bulimia phase but by the time the latter behaviours had sunk their claws into me and I was at uni, I became very underweight. I also became... very unlike who I am. Highly emotional (odd), highly volatile and outspoken (extremely odd!) It was like I was living in a fog and was no longer really 'me'. My hair started falling out by the end of the first term, and after a suicide attempt, I dropped out soon after to return to my family.
I habitually make a great many bad decisions in my life but 'dropping out' I know saved my life: as much as I hate to admit it I was not even remotely strong enough to manage myself independent of my family and comfort zones.
To this day I've never been diagnosed officially with an eating disorder, however. I wouldn't say I managed the neigh-on impossible task of fighting it off myself, either. Spent about 6 months binge-eating after leaving that uni and even after all of that I'd only just returned to a slim/normal weight. In hindsight, I'm genuinely surprised I didn't suffer a heart attack.
These days, looking back at the ****** times of those illnesses, what hurts the most is acknowledging how little any of my family, especially my parents, even saw of these giant struggles at the time. It hurts to wonder whether all they saw was the first child they ever had in what is a very academic family to have dropped out of uni and let them down.

Yes. I never got treatment for it, as my mom didn't believe in that kind of thing.

I used to be obsessed with getting my figure to a 0.7 waist-to-hip ratio. I desperately wanted it. I would measure myself every three days and note it in a spreadsheet. I had charts.

Eventually, my mother expressed jealousy over my figure. Apparently, my being born ruined hers, so I shouldn't get to have a nice one. (No, she never mentioned that any of the behavior was unhealthy, or that I should have felt beautiful the way I was...)

And so, I gained just enough weight not to be clinically underweight.

I still get anxious if my BMI goes over 20, which I know is bad.

Yup! I was diagnosed with anorexia, although it wasn't very typical (behavior wise). I wasn't looking to lose weight. I actually wanted to gain weight desperately, but because I was worried about "overeating" I stayed underweight for a while. I had a very strict routine involving 3 meals a day, plus dessert, and going out for a walk. If I didn't go out for a morning walk, I became very anxious. I wasn't trying to overexercise or under eat. I just liked my routine, and didn't want to change it, and it helped me feel less anxious and more in control.

Now that I'm weight-restored (I'm actually borderline overweight) I've lost my routine. Without it I feel lost and kind of depressed. I want to create a new routine for myself, but I'm not sure how to go about it. Now I have trouble with binge eating and I try to starve myself a lot (which usually results in a binge).

One problem is that once you're weight restored, people stop being concerned about your eating habits. All the thoughts are still there, but since I'm not skinny anymore, no one notices that I still have trouble normalizing my eating. And since I'm almost overweight, I'm trying to lose weight, but that's a slippery slope to ride...

I had disordered eating throughout junior high/high school/and into college. Starting from being a picky eater to restricting my food and exercising to binging to purging. I always knew it was a bad thing and felt like I could make it stop if I really wanted to (cue massive self-blame and hatred).

The first counselor I saw didn't think I had a real eating problem (this was before the purging started). She seemed to think I was just worrying about it too much. I think it was partly because I had a hard time communicating my emotions and just how miserable I was. I'm guessing I came across very deadpan. (Of course she also tried to tell me my queer feelings were just a phase so she was not great in a lot of ways.)

I didn't even suspect I might be on the spectrum back then so I wasn't thinking about that. The things that really helped me get better were yoga (the slower kind, like hatha yoga) and a healthy eating class I went to that really emphasized eating fat and protein in order to feel full, along with whole grains and fruits and vegetables. It also gave me the idea of just giving myself permission to eat whatever I wanted, which helped me break the pattern. Eventually I had to cut back on that permission to avoid pre-diabetes, but by then I was in a healthier place.