Aspergers, EDs, friendships, people, and I'm lost

Allegra

meritaten wrote: »

I think I forgot to mention in my post that my daughter has a nearly 12yr old son with Aspergers and HE was only diagnosed early last year - he doesnt have the same issues as your daughter - but HIS issues are many too! some serious some not so serious! and she went through the NT behavioural thing for years too! makes autistic spectrum kids worse in my opinion and if it aint working after a year or so (he was under the Behavioural Psych for over 5 years!) why dont they realise that it isnt Bad Parenting or Laziness!!!!!!!!!!!!!!! grrrrrr (thats one of my Hot Buttons!!!).

I know exactly what you mean. And this is a biggie for me personally at the moment, because so many of the things that are a cause for concern at the moment are often caused by bad parenting and abuse (self harm specifically). So I know that we, the parents, will come under a lot of scrutiny with each new professional we come across. The important - and the hardest - thing to remember is that this is a good thing; it's a good thing because the kids that are abused, neglected, or just inadequately parented should not slip through the cracks, and the only way to ensure this is to put every parent they come in contact with under the magnifying glass.

So I must not take it personally. We know we are doing our best, but should anyone we come in contact with have any advice on how to make our best even better, we will be happy to take it on board. That's as much as anyone can possibly do, right ?

Sounds like you are doing something right! just keep calm, prioritise and discard what you cannot do anything about (like other peoples attitudes). GOOD LUCK and keep us posted!

Regarding other people's attitudes, now.... Well yeah, hot buttons, lol. However, if you operate on the assumption that most people do mean well, and that their attitude is based on ignorance, it does open up a window of opportunity to educate them. Obviously, if someone is tutting because I have got my nigh-on-6-foot teen in an armlock and am walking her to school after the school bus has long gone, then I am not gonna stop to explain to them as to why I am doing this. And if I didn't need all my wits about me to keep her from taking to her heels, then I might even think how the tutters are most likely to be the folk to ascribe any anti-social behaviour in teens to bad parenting, and the parents inability to do even things as simple as get their recalcitrant offspring to school. Yet they will still tut when they see a parent trying to do just that - get the !!!!!! to school

But whenever there is an opportunity and time to actually explain what it's like being my DD, and what it's like for countless children, teens and adults like her, and what it's like for their parents and carers, I will do so. More often than not my faith in humanity is amply rewarded by the understanding dawning on their faces

Allegra

lauradora wrote: »

Hey guys,

Hot buttons i understand, I work with people with autism and aspergers and hear it all the time it never fails to make people mad :mad:

Allegra, eating disorders are very common in young females with aspergers. its very easy for 'normals' to look in from the outside and believe that individuals on the spectrum are attention seeking...again its very common.

i am by no means an expert but anything I can help with please ask

I hear you. All my research over the last few weeks is also saying the same - and while this is still really no more than educated guesswork from the experts in the field, as no one is really quite sure what exactly causes either AS or anorexia nervosa, there is a lot of evidence to suggest that both might stem from the same neurological cause, whatever that is.

A bit of further light reading for anyone with the interest in the subject: http://www.suite101.com/content/aspergers-syndrome-and-anorexia-a110610

On a personal level, it does feel like a heavy weight lifted off my shoulders, because it adds credibility to the argument that it was not something I did or failed to do that brought her to this. It does not help greatly with the practicalities of how to help her get a handle on it and make it stop, granted, but it does at least mean that I am not too paralysed by guilt and second-guessing to act. Which must be a good thing. I hope

Allegra

Heart_Shaped_Diamond wrote: »

I am a recovered anorexic. It all started at an early age for me, and by the time I was 16 I was almost five and a half stones. I am almost 20 now, so still young enough to remember what it was like at your daughters age - despite the fact that I don't have aspergers. I'm really tired right now or I would add more to this post. But please, please, please do what ever you can to keep your DD away from pro-ana sites. They are very persuasive and if she doesn't have an ED (sorry, by the sounds of it, I think she may) she could end up developing one.

Have you ever looked at 'pro-ana' sites. Even a grown woman such as yourself could easily be sucked in to thinking you will be more beautiful, popular and an all round better person if you would lose just a few pounds. That's how they suck you in. And if your daughter is feeling lonely and in need of friends, she will be convinced it's the right way to go. Especially as people with aspergers are more likely to take things word for word.

Please keep an eye on her. Best wishes, HSD

I read your post shortly after you first posted it, HSD, and then life interfered and I had to time to come back and engage with it. It did, however, set off a train of thought that kept chugging away in the background while I was fighting all our current fires, and in the end I had to agree that, yes, when it comes down to the crunch, you were absolutely right - I really had no justification to continue to allow my DD to access her favourite website unless I knew EXACTLY what she was likely to be reading on it.

Of course, I did look when I first heard about it. I saw the words "pro ana" and pictures of the Olsen twins, and that was pretty much all I could take in at the time.

Yet DD kept saying, every time the subject was raised, that I had it wrong, that the site wasn't like that at all, and that I can not take it away from her because that was all that kept her going. So either way, I owed her an informed decison.

I have to say now that she was actually right. As you and juno point out further down in the thread, the websites that we all think of when words "pro ana" are mentioned can be pretty ruddy destructive, and whilst I do not believe that they can cause an ED, just as I do not believe that skinny celebs can do so (anorexia existed hundreds of years ago, just used to be associated with the religious experience more than looks), it is probably fair to say that they do not aid recovery. And even if I did not feel so myself in the first place, I'd have taken your word for it, as someone who's been through it and emerged on the other side. (This is probably as good a moment as any to mention that I have myself lost half a mouthful of teeth through purging in my teens and early twenties, and have wrecked my metabolism in the process, which was also a reason why I kep away from any more than a perfunctory look at the website, just in case I was wrong about its effects and ended up suffering a relapse myself, as that is something we need right now about as much as a fish needs a metal wheeled contraption that does not work underwater).

What I found was a moderated forum that has topics on mental health, recovery, even healthy weight gain (not the most popular section, but it is there), and stickies all over the place that say pretty much the same thing - an example follows:

We do not allow tips on how to purge or how to stop eating. Don't ask for them. Don't give them. Your post or topic will be deleted without any explanation so this is your warning.

The only acceptable tips are tips that make things healthier and safer. Advice like "drink enough water every day" and "make sure you get plenty of sleep" are fine. Things like "how to purge" or "how to stop eating" are not fine.

Those are triggering, can make borderline ED sufferers worse, and make our dear site look like it encourages people to be sick. Please help to keep our site a safe and supportive haven from the rest of the world.

What's more, I found DD, and a link to her blog, which means an instant line of understanding what is happening inside her mind at any given time. I also found a community of girls (mostly) - well, girls like you, who have been there or are still there, who are more than happy to tell a younger one to talk to her mum; to go and see a doctor; to eat something when she is feeling faint from fasting.

I don't really know if I am right or not, but my feeling now is that I'd be pretty silly to block her off from that.

Don't get me wrong - I am still desperately unhappy that it has come to this in the first place, and am still second-guessing every step of the way if I could have done anything differently, that would have prevented this from happening. And I am also desperately anxious to avoid doing anything now that will make things worse, or hinder them from getting better. It's just that it turns out things were not quite as clear-cut as I thought.

But then again, when are they ever ?

Allegra

CHRISSYG wrote: »

ive just had a meeting with a school doctor who decided to tell dd that she needs to lose weight ,now she is refusing to eat !

Once you have worked your way through the desire to rip off the doc's arm and hit 'em over the head with the wet end (and yep, I know exactly how that feels), perhaps you could try (or enlist the wise cousin's help) explaining that human bodies do not work like machines (a hard one for my DD to understand at best of times), and that refusing to eat might mean a temporary weight loss, but will also mean that the body will go into starvation mode and hold onto any bit of nutrition that is thrown its way later on, which would actually mean weight gain in the long run.

If you can help her understand that the only reliable way to lose weight permanently and remain healthy is to eat regular healthy meals, you'll probably be through this in no time (This even worked on my DD until she realised that she was not losing any further weight - and no wonder, as she's underweight already).

And once you have, hopefully, dealt with the issue, getting in touch with the said doctor and letting them know what their stupidity has donw would probably be a good idea. Sometimes we are the only ones who can educate the so-called experts and make sure that no other family has to go through what we had to go through thanks to their ignorance.

Savvy_Sue

Allegra wrote: »

If you can help her understand that the only reliable way to lose weight permanently and remain healthy is to eat regular healthy meals, you'll probably be through this in no time (This even worked on my DD until she realised that she was not losing any further weight - and no wonder, as she's underweight already).

slightly off topic, but I can vouch for that! either our scales are broken, or I've lost well over half a stone since my catastrophic argument with our recycling bin 3+ weeks ago. I'm eating breakfast, lunch and dinner at 'normal' times (because I have to eat before the painkillers) rather than grabbing snacks as and when. I'm not exercising - barely left the house for 2 weeks! but I'm not nibbling either.

either that or half an upper arm bone weighs over 7 lb more than the chunk of titanium which has replaced it. which seems unlikely.

and no, do not try this at home or as a weight loss technique! :rotfl:

artybear

Thank you for taking the time to reply to us all Allegra. Your comments are always articulate and you are obviously attempting to help your daughter as much as possible.

Does your DD's friends now know that she has AS? My friends were the most important thing in my life throughout my teens and I would have taken alot more notice of them rather than my mum (although she was lovely), im just wondering if they could help her in any way?

Please continue posting when you have timeXXX

meritaten

thanks for the update Allegra! I cannot comment on Anorexia as I dont have any experience there! but, as a gp of an Aspie and I swear my youngest son is and Aspie too, but could never get any health professional to take my concerns serously (this was over twenty years ago) never got a diagnosis beyond 'hyperactivity'.
My nephew is severely autistic and various other family members have diagnoses on the Autistic spectrum so conversations among us mums and gps to tend to feature the condition (a lot). and one thing on which we are all agreed - you feel so alone and as if you are bashing your head against a brick wall when it comes to doctors, psychs etc - then two years later they are quoting your own words back at you as if they have had worked it all out themselves and for some reason you hadnt noticed these behaviours! grrrrrrrrrrrrrrrrrrrr
when it comes to her friends then it is the best idea to educate them on YOUR daughter........not just Aspergers (cos each Aspie is different), my daughter did that with a selected few of her sons friends and their parents and life is so much easier now they understand a little better.
so good luck with that!

anewman

Not read through all 4 pages, but I do wonder if she has misinterpreted her "neurotypical aims" (that is the persona she makes to try to appear normal to all her school friends) as a competition to be the thinnest etc etc, as I am sure they all look in the magazines at anorexic models photoshopped to look even slimmer. Sometimes things do need to be told straight as they are, especially to people with AS. Maybe say life is not a competition to be the thinnest, and that it is good for health reasons to be an appropriate weight. Perhaps get her to look up her weight and height on one of those graphs which says under-weight, normal weight, obese and so on, - then maybe tell her your height and weight to look up. Stress that normal is good, underweight not good, overweight not good.

This is the type of graph I am thinking of http://en.wikipedia.org/wiki/File:Body_mass_index_chart.svg

I hope my post isn't too useless, but I'm sure things will work out for the best.

Edit: this chart is probably more appropriate due to not being an adult http://upload.wikimedia.org/wikipedia/commons/f/f2/BMIGirls_1.svg You need to calculate BMI first http://en.wikipedia.org/wiki/Body_mass_index On the chart the 50th percentile is normal/average weight. Imagine if you know the weights of everyone, you arrange them lowest to highest - the 3rd percentile line represents the BMI of those 3% from the bottom, and subequently the 95th and 97th those at the highest end. 25th percentile or lower puts you in the lowest quarter of everyone. Consider the 3rd percentile and 97th percentile values as basically extreme low and heigh for that age. Hope I have explained that well enough.

Edit again: better yet use this http://www.nhs.uk/Tools/Pages/Healthyweightcalculator.aspx