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Bubbles137
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13 Aug 2012, 12:25 am

Rattus wrote:
I'm on the low end of normal (around 19) which is far too high in the UK. The problem is that I have had a lot of ED help for the wrong diagnosis (I was diagnosed as having BPD/AvPD traits by a psychiatrist who met me for less than 5 minutes) and was treated as being a manipulative time waster. Now it's been realised that it's ASD and not a PD, I am on a 14 month waiting list for an assessment. (it's been verified by a psychiatrist and my psychotherapist who has worked with me for 3+ years and used to work with people and families of those on the Autistic Spectrum).
However, the ED team can't work with anything but the ED, the day centre can't work with the ASD aspects of the ED. I can go to the ED day centre but will be asked to leave if I use any ED behaviours, refuse anything of any meal, use any of the banned table behaviours etc. Everything has to be discussed in groups and nothing can be discussed on a one to one basis with the people who work there.
1) I have massive social difficulties (clearly) so discussing anything as a group is very very difficult.
2) The sensory issues mean I have a long history of going fairly bonkers in groups.
3) ED's are part of my special interest and I have a horrible habit of dominating groups to a truly ASD level. People tend to get pretty mad and I get very embarressed.
4) Whilst I clearly have ED aspects to my ED, an awful lot of it (2/3) is ASD, numbers and sensory issues being overriding.
5) when I panic I meltdown and that means at a table infront of food when I have to eat it in a weird way (I don't like things touching, I hate foods mixing and I like numbers) I am even more likely to meltdown.
6) I won't be allowed to do any physical stims because they will see it as calorie burning. I will not be allowed to rock or pace or leg bounce or jiggle or do any of those things that calm me down.

I'm screwed.

I'm so sorry, I've totally highjacked this. I'm really sorry.


i know the feeling about BMI being too high for help, that's kind of where I am atm too and it really doesn't help that I find it hard expressing what I'm feeling (and I can't talk in groups either). I never really saw anyone in a group situation except as an inpatient (and the main reason I self-discharged was because I couldn't cope with the social/group side of it), that must be really hard if that's the only help you can get. I also have the same experience of most of my ED being ASD related, and that makes it really hard fro an ED team to help, which is the situation I'm in atm. Sorry this doesn't help much but am in a similar sitution!



PennyDreadful
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13 Aug 2012, 1:09 am

I went to a psych hospital for depression, and they tried to diagnose me with an eating disorder, so I spent my whole stay there being forcefed yucky hospital food until I couldn't move...blech. Nevermind that I didn't have one, and my pediatrician even gave them my records from age two showing how I was always underweight and overtall -- a product of a fast metabolism, I would guess, considering the high dosages of drugs they have to give me just for them to have any effect. I think they said my BMI was 16.3 or 16.7 at the time. I wanted to gain weight (ask me about shopping for pants, I dare you), but I wasn't. The anxiety the treatment plan was causing me didn't help, either. Anyway, it was traumatic, so when I got out, I started having serious anxiety about mealtimes. I couldn't finish even my favorite foods because halfway through eating I'd get a panic attack and a nauseous feeling. I ended up losing all the weight I had put on in the hospital. It took me several months to get back to my normal eating patterns, and I didn't even have a fear or being fat or any psychological reason to not want to eat. I'm mostly back to normal. I've managed to gain 10 pounds since last year, so, yay, I guess. But I still almost barf whenever I walk past the nutritional supplements at the grocery store. My parents were trying to get my grandma to drink her Ensure and I had to leave the room so I didn't throw up.



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13 Aug 2012, 1:11 am

Oh, yes, the BMI standards for "eating disorder" status totally need to be dropped. That kind of plays into the social glorification of thinness, doesn't it? Like oh, you're on harmful diets, you're starving yourself, you're vomiting on purpose, but hey, you're fat, so you probably needed to go on a diet anyway. That's horrible. Even an obese person can be anorexic or bulimic.



Bubbles137
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13 Aug 2012, 1:45 am

PennyDreadful wrote:
Oh, yes, the BMI standards for "eating disorder" status totally need to be dropped. That kind of plays into the social glorification of thinness, doesn't it? Like oh, you're on harmful diets, you're starving yourself, you're vomiting on purpose, but hey, you're fat, so you probably needed to go on a diet anyway. That's horrible. Even an obese person can be anorexic or bulimic.


Totally agree- my BMI's 21/22 and my eating habits are 100% worse than when I was BMI 14/15, at least they were relatively healthy then even if not enough.



Rattus
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13 Aug 2012, 2:58 am

Bubbles137 wrote:
PennyDreadful wrote:
Oh, yes, the BMI standards for "eating disorder" status totally need to be dropped. That kind of plays into the social glorification of thinness, doesn't it? Like oh, you're on harmful diets, you're starving yourself, you're vomiting on purpose, but hey, you're fat, so you probably needed to go on a diet anyway. That's horrible. Even an obese person can be anorexic or bulimic.


Totally agree- my BMI's 21/22 and my eating habits are 100% worse than when I was BMI 14/15, at least they were relatively healthy then even if not enough.


absolutely agree, the thing that is so frustrating is that the medical profession so often forget to look beyond your BMI. I'm lucky that I have a good GP who after the latest potassium crash has insisted I am blood tested once a week but my old GP didn't use to blood test me any more than once every 2 months or so, even though after my last ED admission they discharged me with the strict instructions to blood test me every week. The problem is whilst my BMI may be stable, I'm b/p 6-12 times every single day, I cannot afford this to begin with. I've had three days in the last 9 months where I haven't vomited but I have to vomit because after a decade of vomiting my body just can't digest food easily and the pain is indescibable. I b/p the same foods every day, I keep down the same foods every day. Outside of the bulimia I have SED not because I think I'll get fat but just simply because I am scared of not eating the same foods, I get stuck on a food and that's all I'll eat. It's not a weight thing, that's relatively small in the scheme of things, it's how it feels in my stomach, it's numbers, it's rituals, it's change, it's obsessions etc. My trouser size is a relatively small worry. I don't like change.



Bubbles137
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13 Aug 2012, 3:41 am

Rattus wrote:

absolutely agree, the thing that is so frustrating is that the medical profession so often forget to look beyond your BMI. I'm lucky that I have a good GP who after the latest potassium crash has insisted I am blood tested once a week but my old GP didn't use to blood test me any more than once every 2 months or so, even though after my last ED admission they discharged me with the strict instructions to blood test me every week. The problem is whilst my BMI may be stable, I'm b/p 6-12 times every single day, I cannot afford this to begin with. I've had three days in the last 9 months where I haven't vomited but I have to vomit because after a decade of vomiting my body just can't digest food easily and the pain is indescibable. I b/p the same foods every day, I keep down the same foods every day. Outside of the bulimia I have SED not because I think I'll get fat but just simply because I am scared of not eating the same foods, I get stuck on a food and that's all I'll eat. It's not a weight thing, that's relatively small in the scheme of things, it's how it feels in my stomach, it's numbers, it's rituals, it's change, it's obsessions etc. My trouser size is a relatively small worry. I don't like change.


That is my experience exactly! I hate it :( and that's basically what the psychologist said in my CPA, that i'm too scared to change so they can't really help any more. REALLY want to stop the b/p though, I hate it so much.



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13 Aug 2012, 4:22 am

Issues with change is so much a part of ASD that given the amount of people who have both ASD and food disorders you would think there would be some kind of support within the system that combines the two. What makes me angry is that if CAMHS had of done their job 10 years ago and asked me and my parents questions about my past instead of assuming the social difficulties, anxiety, isolation, OCD, issues with change, strict adherance to routine, meltdowns, life long eating difficulties, sensory difficulties etc were as a result of having an ED this could have been sorted within about half an hour. However, as I was a girl they automatically assumed that I couldn't be on the spectrum, ignored my parents when they said this had been going on for a long time, split us up, told me I was doing it because I liked causing my parents pain (which I don't, my parents are the only people I've ever had a close relationship to), insinuated to my parents there was abuse (which there wasn't) and messed everything up.
If they'd of helped me 10 years ago in the way they are now it would never have got to this point ever. I wouldn't have a severe ED, Social phobia and OCD that's been going on for 16 years. My parents would have been told to kick me out because I was 'choosing' to behave like this, I wouldn't have been banned from going on holiday for 5 years because I was 'choosing' my ED and that means I shouldn't be given nice things (my ED 'expert' told them if I wouldn't choose recovery I shouldn't be allowed on holiday). I wouldn't be living in a horrible house with people who steal my stuff and hate me. I miss my mum and dad, I miss home, I don't fit anywhere and this could have been so easily sorted 10 years ago. All they needed to do was give me a damn AQ, BAP, EQ test to see I score significanly within the ASD area. The same with the SPD test, so why on earth didn't they?
Sorry, I'm angry with the damn system and I am tired of being let down by them. I'm not thick, I could have been well on my way to getting a Phd if they had just given me the damn tools to function, it wasn't hard they just needed to help me in an ASD way which they are now and suprise suprise it's helping. However, they've wasted 10 years and I'm in the adult system now which means there is no god damn funding!! !



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13 Aug 2012, 4:44 am

I think that an even bigger problem than anorexia for young aspie girls/women is comfort eating. I've done that since I was a teenager. I just felt so empty and had to fill myself with something. Right now, I try to be strict with myself, I watch what I eat and exercise regularely



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13 Aug 2012, 5:30 am

My doctor thought I was anorexic at 12, but I refused to get tested. I'm fine now though :D.

For 2 years, I was obsessed with calorie counting, and for about 14 months, I exercised all I could, even though I was exhausted from school, and was behind on homework from the exhaustion.


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13 Aug 2012, 5:43 am

I know it doesn't help to contradict all your experiences here, but I just want to say that the anorexia thing isn't universal. I do sometimes get obsessive with my diet and calories, but I always end up eating quite a lot, anyway. I've always loved food and eating. It's very difficult for me to control, even when my mind is on it. I have to exercise a lot and try to distract myself to stop myself gaining. I'm overweight right now and trying to get back to a healthy BMI. It's impossible for me to diet. I just try to be mindful of portions and exercise a lot.


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Kenjitsuka
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13 Aug 2012, 5:59 am

Issit wrote:
Girls, I struggled with bulimia for years.

Now, for a long time though it seems to be OK though.

What got me out of that was not using the scales at all.

I just look at my legs and try my clothes how it fits.
Plus...drink lots of water.
-With apple vinegar. Morning and evening.


Issit, I drink four liters of water each day.
If I wouldn't use the scale I'd loose tons of weight instead of being stable...
Because what I see when I look at my body is not consistent with what others claim to see.
I *need* to see the numbers staying the same, or else I'd absolutely KNOW I was gaining and would restrict at full force...
On a sidenote; I'm not a girl, I'm male and nearly 30 years old.

Puddingmouse: It's dangerous to get "obsessive" with these things, as you only need a little push to fall through, and then your brain changes and going back will be very, very, very hard.
It started like that for me too, obsessing over the calories. Then cutting more and more of them out...


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13 Aug 2012, 6:05 am

Kenjitsuka wrote:
Puddingmouse: It's dangerous to get "obsessive" with these things, as you only need a little push to fall through, and then your brain changes and going back will be very, very, very hard.
It started like that for me too, obsessing over the calories. Then cutting more and more of them out...


My medication makes my appetite huge, and I hate throwing up. I crave much more food than I need. This is how I got fat in the first place.

I see anorexics post online and say they struggle to eat 500 calories a day. I struggle not to eat over 2000.


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Bubbles137
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13 Aug 2012, 10:36 am

Rattus wrote:
Issues with change is so much a part of ASD that given the amount of people who have both ASD and food disorders you would think there would be some kind of support within the system that combines the two. What makes me angry is that if CAMHS had of done their job 10 years ago and asked me and my parents questions about my past instead of assuming the social difficulties, anxiety, isolation, OCD, issues with change, strict adherance to routine, meltdowns, life long eating difficulties, sensory difficulties etc were as a result of having an ED this could have been sorted within about half an hour. However, as I was a girl they automatically assumed that I couldn't be on the spectrum, ignored my parents when they said this had been going on for a long time, split us up, told me I was doing it because I liked causing my parents pain (which I don't, my parents are the only people I've ever had a close relationship to), insinuated to my parents there was abuse (which there wasn't) and messed everything up.
If they'd of helped me 10 years ago in the way they are now it would never have got to this point ever. I wouldn't have a severe ED, Social phobia and OCD that's been going on for 16 years. My parents would have been told to kick me out because I was 'choosing' to behave like this, I wouldn't have been banned from going on holiday for 5 years because I was 'choosing' my ED and that means I shouldn't be given nice things (my ED 'expert' told them if I wouldn't choose recovery I shouldn't be allowed on holiday). I wouldn't be living in a horrible house with people who steal my stuff and hate me. I miss my mum and dad, I miss home, I don't fit anywhere and this could have been so easily sorted 10 years ago. All they needed to do was give me a damn AQ, BAP, EQ test to see I score significanly within the ASD area. The same with the SPD test, so why on earth didn't they?
Sorry, I'm angry with the damn system and I am tired of being let down by them. I'm not thick, I could have been well on my way to getting a Phd if they had just given me the damn tools to function, it wasn't hard they just needed to help me in an ASD way which they are now and suprise suprise it's helping. However, they've wasted 10 years and I'm in the adult system now which means there is no god damn funding!! !


I had no experience as a teenager because when I first went to the doctor at 13, I was told it was a phase and because I b/p a lot as a teenager, my weight was relatively stable. I was only diagnosed anorexic at 18 and was a inpatient on and off till I was 21 and have seen various people as an outpatient since then but ASD was only brought up a few years ago. Weirdly, I was babysitting last week for two kids whose mum works for CAMHS and she picked up on AS the first time she met me which I thought was really strange, I was too surprised to deny it and it was kind of a relief to be open with someone for once. I know the feeling of everything being related to ED- that's the experience I had for years until the woman I was seeing thought to give me an AQ/EQ/BAP test too and then concluded that I was very likely to have AS. I can totally relate to the lack of support in the adult system, so frustrating. I failed a teaching course last year and the woman who picked up on AS said she thinks it could be because of AS issues (I had problems with classroom management and coping with the noise levels) and said I should have been open with the school but I don't have an official diagnosis and because I already have an ED diagnosis and inpatient treatment, I'm not sure whether I can mention it?



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13 Aug 2012, 10:51 am

puddingmouse wrote:

My medication makes my appetite huge, and I hate throwing up. I crave much more food than I need. This is how I got fat in the first place.


Time to switch to alternatives? There's always alternatives to a drug, with different side effects!! !


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The Broad Autism Phenotype Test: You scored 132 aloof, 126 rigid and 132 pragmatic. IQ: 139. AQ: 45/50


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13 Aug 2012, 10:53 am

Bubbles137 wrote:
said I should have been open with the school but I don't have an official diagnosis and because I already have an ED diagnosis and inpatient treatment, I'm not sure whether I can mention it?


Sure, why not? If they require an official diagnosis you can always think about getting one.
If your ASD is making you fail where you could succeed with some minor adjustments you owe it to yourself to give it your all to make those changes happen!! !
Not going all out to get what you want/deserve is typical with the low self esteem generally attached to ED's, no?

About noise levels; wear earplugs untill the teacher begins to speak?
Or listen to music... I *always* do that to block sounds.


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Empathy quotient: 14
Your Aspie score: 185 of 200
Your neurotypical (non-autistic) score: 14 of 200
The Broad Autism Phenotype Test: You scored 132 aloof, 126 rigid and 132 pragmatic. IQ: 139. AQ: 45/50


Bubbles137
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13 Aug 2012, 2:12 pm

Kenjitsuka wrote:

Sure, why not? If they require an official diagnosis you can always think about getting one.
If your ASD is making you fail where you could succeed with some minor adjustments you owe it to yourself to give it your all to make those changes happen!! !
Not going all out to get what you want/deserve is typical with the low self esteem generally attached to ED's, no?

About noise levels; wear earplugs untill the teacher begins to speak?
Or listen to music... I *always* do that to block sounds.


It's definitely something to think about, think I'm going to ask the woman who brought it up what she thinks. Bit worried it didn't work out because I'm just a rubbish teacher though! I love working in schools though, I'm voluntary atm and have been for 5 years, would love a 'proper job' in a school.

Can't use earplugs because I'd actually be teaching and would have to be able to hear the kids; I think it's something I need to either work on learning to tolerate (or at least not go into 'panic' mode where I can't see straight or communicate anything to the kids) or to control the noise level before it gets too much. Needs a lot of thought I think... My mum seems to think that one of the reasons it didn't work last time was because people knew I'd been an inpatient for ED which is why she doesn't think I should get an AS diagnosis. No idea what to do!