After thinking more about body dysmorphia and if or how it could be connected to people on the autism spectrum, I went looking for information to see if there was any. This was prompted by me writing a post called  My “Flaws” That Led to Dysmorphia. I did not find much on the two being connected, I did find some people diagnosed with both Aspergers and BDD but no real information so far. What I did find was this article on Scientific America More Than Meets the Mirror.

What really stood out to me was the study they mentioned.

They claim that “A new study shows that the way people perceive their external appearance is likely linked to how they experience their bodies internally.” I have not read the study yet I am going to later when I have more time. I see a clear connection for me about the external and internal because I feel and always have felt disconnected from my body. The only times I feel whole are when I am writing, dancing or singing which normally involves dancing. I will explain it like this, during the day when I am doing other tasks like picking up, cleaning something, making meals, walking to the car, all of the movements that my body are making feel foreign. I have to think about what I want body to do. Maybe the best way to describe it is to show it.

The Brain in his mechanical suit.

That was the best clip I could find, but when Brain is trying to control his movements with controls that is what I feel like when I am trying to use my body. I feel like a brain in a mechanical suit that I cannot control very well. When I write, the words flow directly through my hands and they just seem to connect with no problems. I don’t have to constantly think about the mechanical process of writing, because when I write it just seems to come naturally. I feel the same thing with dancing. If I feel forced to write something or when I am nervous about the social situation of writing, like comments or emails to people then it takes a bit more concentration and quite a bit longer.

I can see where my disconnect to my internal body would make me distorted to my external appearance.

My brain would seem to be unable to get an accurate perception of what I see because it doesn’t “feel” like me. Since I feel that I am an unreliable source for my own body, naturally I would look to other people for their input on the matter. While collecting data in my mind about myself, it would seem that I took more of the negative comments because they seemed to be more and applied them to myself. I would take in the information, hear that I was ugly, gross, fat etc… and then say well this is the image that others see so it must be the true image. My motor-spacial disconnect made me not have an accurate view of myself.

Interesting about anorexia nervosa, they say that patients still think they “need to lose weight even as their bodies waste away”.

Yesterday in my post I wrote about how my thinking has dramatically changed but when I get stressed out I begin to focus on my weight. I will begin to obsess about loosing 10 pounds and secretly think of diet plans and exercises that I can do. The difference now is that I see the pattern and tell David or I force myself to read things about normal body weight and the dangers of excessive exercise or what lack of food can do to the body. I no longer stay silent, I write about it in prayer and ask for help with seeing the right way. I do not know if I will ever have an accurate view of my body or if I will ever completely stop trying to control my weight when I am under stress, but at least now I have a strong support system in this area and people who may not understand but they will help me.

The only thing that saved me from starving myself in the past were my friends or family commenting about me being too skinny.

My fear of them finding out would trump my need to lose weight. In a sense it made me feel that I was in control because I could determine if I gained weight or lost weight. The obsessive need to weigh myself, monitor how much food intake I had and constantly thinking about it was still there but I was very good at keeping it secret. In a way I felt it was all I had that no one else could take from me. Exposing these things and talking about them definitely starts the process of healing. I know that part of this has been the reason for my social anxiety. But understanding why my brain would even go there would be a great thing to know. Why would I take what women said about their bodies as a comparison to my body? Why would I believe that if someone said that some feature on me was big or gross that it was true and then feel guilt for them having to look at me? Why would I justify that I have a legitimate flaw because of my birthmark and feel that I deserved for people to feel uncomfortable around me?

Why? I don’t know but this not being able to sense my internal body does sound plausible to me.

There is another thing that I have witnessed with my sisters, they have a food obsession. They love food. They are emotional eaters and I do not understand that. They do not understand how my mom and I cannot eat when we are upset and we cannot understand how they can eat when they are upset. It’s just one of those things that we do not understand and let it go. My sisters act as though they are happy with their image but then a large portion of their conversations are self-destructive talk. I do not know if it is learned, they really believe it or if they too have a jaded view of themselves. Maybe all of the above. I tell them that it is not true or not to say those things but it doesn’t stop. They get mad at mom when she has said things about being too big, it makes them very angry. But now I am wondering if my mom is having the same issue as myself. I know that she only feels really connected to her body and mind when she is painting. Hm…There could be something to this.

What about any of you, do you experience any internal/external disconnect? Any problems with appearance from that perspective?

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Today I read this article The XYZ’s of Body Dysmorphic Disorder (BDD), I read about BDD maybe about a year ago. David was the one that actually brought it to my attention and said that I seemed to have body dysmorphia because of my delusional description of my body on many occasions. Along with my obsessive weighing, not looking in the mirror and my obsessive worrying about hairs, like with my eye brows. I do not seem to show clear traits of OCD so he felt that this was more accurate and that maybe I would find some answers if I researched it. I have a very hard time seeing my body in an accurate way. I believe this started when I was around five years old with my body weight, I talk about that somewhat in my post Aspergers and Anorexia. Body dysmorphia seems to be a trait with my mother and several of the family members on my dad’s side, including the males.

I have an additional “flaw” that people really started to point out as I got older.

I have a birthmark on the side of neck. It is port wine in color and only about an inch of it shows on the side of my left jaw area, the rest of it is about 6 inches along the side of my neck all the way to my head, and it goes into my hair-line. When I was a baby it actually took up most of my neck. It is not a dark purple, some people have asked me if I have had treatments because it does look a bit faded but I have not had treatments. It is really only noticeable when I wear my hair up. As I got older I kept my hair very long so I could cover it up from people. I hid behind my hair for a very long time.

I had people and kids make mean and rude comments to me all of my life about it.

I did try make-up but my sensory issues could not handle it, I can’t stand foundation or pancake make-up on my neck at all. My mom and I discussed doing treatments when I was around 16 yrs old, she told me that she didn’t see any reason for me to do it but that if it was such a source of pain for me that she would be willing to pay for the procedures. She told me to think about it on my own and make my own decision. I talked to some family members and friends and all of them said that it wasn’t noticeable to them and it didn’t make me ugly. I wanted so much to believe them. I based my decision on the fact that I felt like I was the way that I was supposed to be and if I were to go through treatments, it wouldn’t be for me it would be for the acceptance of people. I decided then and there to never consider it again.

Even though I made that decision it was still hard.

People can be cruel. Since I had long hair I would always put it on top of my head in silly styles just to get it up out of my face, I would forget that I even had a birthmark. Though, I purposely would lay out in the sun and get as dark as possible to ensure that it would look lighter. Then while working, minding my business or being out and about at a restaurant or store, someone would say “What is that on the side of your neck?” “What happened to you?” “Did you get burned or something?” “You know you can have that thing removed.” All kinds of comments that for some reason society feels the need to say to someone who has a difference. I have to confess on the day the woman told that I could “have that thing removed” I looked right at her and said “Well then I would be just like you. I like me for me.” She was taken back and stumbled on her words trying to sound like she didn’t mean them offensively. I am sure she meant well but on that day I was amazed at the words that flew out of my mouth.

On that day I actually stood up for myself.

Even though I didn’t feel that I should have my birthmark removed, I still would be affected by the rude comments people would say. But I did not let it stop me, one year I got fed up with having long hair, it was too much to take care of, so I cut it all off  up to my jaw line. There was my birthmark out and open for all to see. I lived in a city where people didn’t much care, it was too big and too diverse for most people to notice my birthmark. When I moved back to my hometown, to various other cities that were quite a bit smaller, including this one, people were quick to point out my “flaw”. By this time though I would just be polite and tell them it was a birthmark and smile. But I still felt the impact of the pain, the hurt. It still happens and people close to me don’t think anything of it. David and I will be out and someone will stop and stare, gawk and I just look at them like “WHAT?” on some days I have said it out lout, I admit.

David has no clue what is happening until I tell him.

Same with my mom, my sisters no one ever thinks of it but they have never been ridiculed or pointed out for having such a flaw. They don’t see it, they see me, it is part of me and to them it is not ugly or a flaw. As I am writing this now I am getting a bit teary eyed, I haven’t thought about the pain and the fixation that this had caused me with my appearance. Reliving those experiences are hurtful, I would like to say that it stopped into my adulthood but unfortunately adults still say the same things as the kids did in school to this day. The difference now is that I understand how that and my weight were triggers for me to have such a jaded and inaccurate view of myself. As I read over the article I realized how much I have grown, though I still do not see an accurate view of my body or even my birthmark, I intellectually know that what I see is not true.

I have been able to overcome my eating disorder.

I have also been able to overcome a lot of my dysmorphia thinking, through applying cognitive behavioral type therapy at home. I have changed my way of thinking about all of this and David has built into me to help me have a better self-image. He hasn’t told me what to think he has just been a positive reenforcer during my struggles. It helps that he lets me talk about just whatever. In this particular area though he told me that I needed to get a positive self-image for Ariel and the boys. The things that my mom says about herself are not true, she still does it and it has been damaging to me and my sisters about our own self-image. She is working on it and we have been talking about it because David made a very good point by helping me to realize that if I did this in front of Ariel she could have the same problems. That made me more aware of what my mom says around Ariel as well and I explained it to my mom. She has gotten more receptive in this and doesn’t want to influence Ariel in this either.

Though my mom tried to make me confident in who I was she diminished a lot of it with her own self-destructive talk.

The obsessive weighing myself has stopped, I am letting myself be at a normal weight without doing negative talk, I am not concerned with hiding my birthmark, and I am feeling pretty good with where I am at. I have come a long way in this area in the past year and I hope to continue. Dysmorphia is not about vanity, I am not sure how it affects someone on the autism spectrum. I believe the reasons for dysmorphia may be different from other people though. My whole reasoning for hiding my birthmark was so I would not upset others. I felt bad for making people feel uncomfortable. When it came to my weight, the first reason was to make my boyfriend happy or my mom proud of me for being skinny. My mom never put those terms on me but in my mind her concerns about weight and image meant that. The boyfriends who said that I needed to lose weight were trying to control and manipulate me. My eventual obsession turned into my need to try to control my own world. My weight was the only thing I could control solely.

I don’t know if others have had these issues or not but I felt such a release and sense of achievement from reading that today that I had to write about it.

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I have been reading quite a bit in the past several weeks about this new information that Anorexia could be connected to Asperger’s. My reasons are because I suffered from anorexia and would like to know. The sudden interest once again is linked to my family situation that I am currently working through, because I cannot eat. Whenever I am upset I can’t eat. So that triggered me looking into this once again.

There was a time when I made myself stay at 99 lbs.

All through my early 20′s I would not let myself get over the 99 mark. If I did I would stop eating. I was broke most of the time and couldn’t afford food so to remedy this I took diet pills. No one ever knew until I told them. I would eat and I can eat! I have now discovered that I would binge eat. I could throw down two Big Macs, a large fry, chicken nuggets and be hungry again in about an hour. Not really impressive though, if you don’t eat for days it is very easy to eat a ton of food.  But I did eat quite a lot however, it was always like once a day so I made sure people saw me. Easy enough. At least I had a mark though, I knew I couldn’t go lower than 99 lbs but I had a secret goal of 85 lbs, I never made it thank God!

I had a hard time dealing with my 100 lb pound mark.

People started to take notice of my size so if I could say that I was 100 lbs I figured that was good. Along the way I had people who cared about me tell me that I was just too small. And eventually I did get to 105 lb and stayed there until my second divorce and then I went back down to 100 lb because I had no money for food and I was upset a lot and was unable to eat. When David came around his goal was to fatten me up. I was sick, my color was bad, I was not in good shape at all. I was skinny but in bad shape. I did get back up to 105 lb, freaking out the whole time but I was there when I got pregnant. I was very concerned with my weight when I got pregnant and I was concerned that I would gain a ton and never lose it.

I quickly got over that and felt the health of my children were much more important than my weight.

I gained a ton and I gained a ton with Joshua as well. It took forever to lose the weight but I have lost weight and I am at a healthy size. There is no need to disclose that information but I am exactly where I am supposed to be for my height and age. It has taken a lot to over come and I still haven’t in some areas, when I look in the mirror I see a very large person. I think that my stomach is huge. I feel on some days that I am just disgusting, though I know it is not true I cannot fight what my eyes see. My husband has loved me and has thought that I am beautiful no matter what size I have been and that is pretty much all I need. I do need his input to help reassure myself that I am not as big as our house.

Interestingly, I do not see others like this at all.

Everyone else to me is the same, there is no difference in shapes, size, height whatever. Everyone seems to be my age or younger and average size. It is only when it is brought to my attention like someone saying “Oh I have a big butt” or “I look fat”. Then I am aware of their shape and if they are skinny I am like “You are ridiculous, why are you saying that”  if they are large I inappropriately say “Yes, you do look large” or I say nothing at all. Because I remember I am not supposed to say the other thing. Although, if I ask David if I look large or bad in something I fully expect him to tell me and he is quite honest with me all the time. And I appreciate that.

So now that they are doing studies  about autism and anorexia, along with other eating disorders I find it quite interesting and will stay on top of it.

Our family has a predisposition so I want to be aware and watch for any signs. Appearance isn’t really a big deal in our household and my issues, David and I have kept between us so that the kids will not hear it or be influenced by it as I am still over coming things. They seem to be perfectly happy with their bodies and unaware of any eating issues. I take great comfort in that because I remember when I was 5 yrs old, that is the time that I had become aware of my weight. My pediatrician told my mom that if I did not stop eating the way I did that I would become obese. I was not a large child, I was just an eater, still am. I remember from that day on, I thought that I was fat.  And so the eating disorder began. Food and  nutrition were not explained to me and either was this comment. I took it, held on to it and used it as my spring-board to make sure that I would never become obese.

It’s those kinds of things that really need to be clarified to any child but especially those who are on the autism spectrum.

My situation was enhanced by my mothers obsession with her weight, my boyfriends who told me I was fat and the many media outlets that informed me of what I was supposed to look like. I also think that I wanted control over something because my whole life had no control. So controlling my weight and cutting myself were a means of feeling something and feeling in control. No one could make me gain weight and no one knew that I was cutting myself. They were mine. I would like to know how much cutting plays a roll in eating disorders as well.

Here are some articles that I found quite interesting.

http://autism.about.com/b/2007/08/23/are-asperger-syndrome-and-anorexia-connected.htm

http://autismaspergerssyndrome.suite101.com/article.cfm/aspergers_syndrome_and_anorexia

http://www.huffingtonpost.com/trisha-gura/anorexia-wired-like-asper_b_61506.html

http://www.timesonline.co.uk/tol/life_and_style/health/features/article2272080.ece

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