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

Allegra

I'll try to keep it brief to start with, although if anyone has anything to offer (and God, how I hope that someone does), I can not promise to keep it brief from then on

Anyway - I have a daughter. She is 13, and has Aspergers's Syndrome. As a side effect of the condition, food was always a very sensitive issue with her - she never ate what you would call normally, and it always deteriorated whenever she was under stress, which sadly was way too often to comfort.

For the last couple of years, though - since she was diagnosed, in fact, which enabled me and my partner to learn as much about how to help her handle her condition as is known at the moment - she's been doing quite well. She ate better when she ate in private (oversensitivity to sound of other people eating), and it's been good 18 months since we last had a meltdown or a pronounced episode of "sibbing" (self injurious behaviour, ranging from uncontrollable banging of her head against the wall to altogether more tame pinching and scratching when stressed).

A big part of the reason that things were going fairly well was the fact that she, for the first time in her life, actually had friends - three other girls from her tutor form. None of these girls was aware that DD was Aspie, as DD was in denial about this herself and did not want this mentioned to anyone. It's not something I was particularly happy about - apart from meaning that DD was not realising how amazingly well she was doing despite her disability, it also left various oddities of DD's behaviour open to misinterpretation - for instance, abruptness and inability to empathise when a friend was in distress would be read as rudeness and selfishness.

Anyway. One of these three friends - DD's best friend, in fact, has an older sister that is anorexic. A little while ago, this friend's mother phoned me to let me know that her daughter was very concerned about my DD as she was exhibiting the same sort of symptoms that she saw with her sister. As it turned out, she was right to be concerned - I have not noticed it as soon as abnormal, in our house, is the norm, and it is hard, not having anything else to compare with, to know what is just DD and what is a sign of things spiralling out of control.

Sorry, did I say brief ? I am trying, I promise In a nutshell - DD has been visiting pro-ana websites, throwing her lunch away, obsessively calorie-counting, believing she is fat and ugly (she is actually underweight, always has been), and self-harming.

So, of course, I am tremendously grateful to this child as, without her doing the responsible thing and alerting me, via her mum, to what was going on, it would have taken me a lot longer to realise how bad things were getting. I am not proud of this - in fact, I feel like a total and utter failure as a parent - but this is not about me, it's about doing what's best for DD, and this is what I have desperately been struggling to do for the last 13 years, and will probably continue to do as long as I am alive.

Fast forward four or five weeks - I have had a serious dressing down from DD's school for apparently mishandling the situation - statement retracted after a face to face meeting and a frank if rather sanitised account of how home life has always been for us - am still waiting for an appointment with the GP to seek expert help for DD (app is next week, so at least not that much longer to wait), and tonight DD has come home saying that her best friend is no longer speaking to her as she believes that DD has been making all her troubles up and that this is making fun of the serious disorder that her sister has (diagnosed anorexia nervosa). Apparently, this is based on the fact that her mum phoned a counselor after DD sent her friend a desperate email saying she feels suicidal because her eating is out of contril, and this counselor said that this sounds like something that was taken off a website and blanks filled in.

Does not make any sense to you ? Nope, nor me. Now, DD being Aspie, I am very much aware that she misunderstands, misinterprets, and misremembers things as a matter of course when it comes to human interaction. But this is not the first time that it was mentioned that DD's best friend does not quite believe things that DD said to her re her eating and self harming, and it was also mentioned before that she feels DD's issues somehow to be disrespectful to her sister. So I don't think that DD made it up from scratch. And she is absolutely devsatated about the issue, and about the loss of her friend.....

So, really, what I'm hoping for is that someone else, neutral and completely removed situation can make some sense of it, because, frankly, my dear, I am completely lost. I suppose I should phone this girl's mum and see what the heck is actually going on, but I just don't know what to say to her. I am scared that anything that I come up with atm could be seen as an attack, and as this poor woman has been going through similar things that I am drowning under for years, I really do not want to make it harder for her.

But I have to do something, for DD's sake. Just what ?

Brief, ha-ha. Sorry 'bout that, and thanks for reading.....

Plans_all_plans

If your daughter is exhibiting worsening eating habits, in conjunction with visiting pro-ana websites then I would be extremely worried. The doctor's appointment is a good start. I would wait until you see the doctor before you do anything else. If your daughter is just 'attention seeking' as her friend seems to think then the doctor will tell you, but if she has a serious problem with eating then you will find out and her friend may feel able to offer support if she has a confirmed diagnosis?

Has your daughter admitted visiting these websites, throwing the lunch away etc? If she has access to a laptop/computer away from the living room I would confiscate it. Those websites would twist your mind, particularly if you are an impressionable 13 year old.

With regard to her friend, I feel you should not contact her or her family unless they get in touch with you first at the moment. I feel you getting involved with your teenage daughter's friendships will only cause more issues. The other girl's mum will stand up for her own child and I think you'll just end up going round in circles.

I feel for you. Best wishes.

GlasweJen

Hi OP
I (was) a closet HFA sufferer on the boards until very recently (man problems, i'm 24 and clueless lol).

I think it can be quite common for autistic people to be very controlling with food, it just doesn't mean the same to us as it does to everyone else. I have never found food to be comforting or enjoyable because it's just different forms of getting energy into your system. Food is still quite alien to me and I can go for long periods without eating if no one reminds me.

With this in mind I'm wondering if your daughter is to some extent emulating her friends sister in that your daughter probably doesn't miss food, might see the whole exercise as being rather pointless and has misinterpreted someone else not eating as a proper choice rather than a mental illness?

The email may be a reaction to everyone elses reactions, her friend suddenly thinks that she's an attention seeker, her mum is taking her off to the doctors and she's stuck wondering how she managed to mess it up so much when she thought she was doing the right thing.

I would keep the appointment with the doctor, take your daughter along and seek help for both the anorexia and the problems related to Aspergers as well, it may benefit your daughter to meet other aspies that she can be herself around instead of constantly having to put on a persona around her "normal" school friends.

I'd probably talk to the friends mum, not about the email or her daughter though. Maybe something along the lines of "thanks for the heads up about DD's eating, it's quite difficult for her because she has AS and she's uncomfortable sharing her condition with others". I'd not tell her friends directly but I'd definitely get her to talk to her friends about it once this has blown over a bit (at 13 it will likely blow over soon).

I think you're doing great so far OP, remember to stress the importance of food without making it seem like a chore (find out what foods are good for the skin, hair, nails etc. that will keep your daughter interested without it all being about weight).

Hopefully this will be a teething problem rather than a full blown catastrophe.

Hope all that makes sense, best of luck OP!

System

my 13 yr old is about to be diagnosed with aspergers/asd and food was a huge daily problem but we have decided not to make it a battle we allow her to eat when she wants and within reason what she wants [not malteesers all day !!] and although its taken over a year she is comming around to eat foods that she previously would reject.
get her to make a list of the foods she will eat and for a while let her have them, once the battle is taken away the results are amazing.

Allegra

Plans_all_plans wrote: »

If your daughter is exhibiting worsening eating habits, in conjunction with visiting pro-ana websites then I would be extremely worried. The doctor's appointment is a good start. I would wait until you see the doctor before you do anything else. If your daughter is just 'attention seeking' as her friend seems to think then the doctor will tell you, but if she has a serious problem with eating then you will find out and her friend may feel able to offer support if she has a confirmed diagnosis?

Has your daughter admitted visiting these websites, throwing the lunch away etc? If she has access to a laptop/computer away from the living room I would confiscate it. Those websites would twist your mind, particularly if you are an impressionable 13 year old.

With regard to her friend, I feel you should not contact her or her family unless they get in touch with you first at the moment. I feel you getting involved with your teenage daughter's friendships will only cause more issues. The other girl's mum will stand up for her own child and I think you'll just end up going round in circles.

I feel for you. Best wishes.

She has admitted to it, yes, first in that email she sent to her friend, and later on when talking to me about it. Eating in front of people has always been a huge issue for her as she is oversensitive to certain sounds, specifically sounds of other people breathing, coughing (God help anyone in our street with a chest infection !) and eating. We have tried to compromise regarding the lunches til the cows came home, and currently we're at the "do not bother giving me any lunch as I will just throw it away" stage. Scratching around for a positive, at least I know this now, and can make sure that I wake her up early enough in the morning to give myself time to talk her into having some breakfast. Far from ideal, but the best I can do at the moment.

As for the websites, yes, she does have a laptop in her bedroom. This has long been her main way of unwinding after the stresses of having to deal with school and people all day long. I try to pop in every so often to keep an eye on what she's up to, but that, obviously, is hardly ideal and leaves plenty of scope for doing whatever she wants in between my visits. It is blatantly obvious that you are right and that the only sure way of stopping her doing this is to confiscate the laptop and only allow internet access in the family area of the house - sadly, I am a cr*p parent and completely unable to do this, as I can not deal with the fallout. When I tried to do this, she felt she was being punished for being honest with people, plus could not cope without her unwinding lifeline, so I relented. Besides, the privacy and the benefits of having access to a private computer was something that the autism specialists she saw two years ago always strongly emphasised, which is why I feel that whatever I do will be wrong.

What I'm trying to do at the moment is simply creating an atmosphere where she'll have her mind otherwise occupied - that is, when she looks as though she is itching to go online, I park myself in her bedroom and chat to her, try to make her life, find things for us to do, ask for help with stuff etc. - and keep this up til bedtime if needs be, then take the laptop away at night so she would not find it too much of a temptation (she has got up in the night and gone on previously). She is ok with that and does not find it unreasonable.

So whilst it does feel like too little, too late, it is the best I can do atm. I do not think it's by any stretch of the imagination good enough, which is why I am trying to involve the experts. What I need to do - somehow - is to create a situation where she'll not want or need to go on these websites anymore. I don't really know yet how to do this, but hope that we'll find someone who does, and soon.

I understand what you are saying about getting involved in her friendships - thing is, the sad fact is that without the subtle involvement from both us and DD's teachers over the last couple of years, these friendships would not exist. DD just does not have the skills to maintain them herself, and needs an interpreter when she is in danger of alienating them. She is someone with the intellect of an adult, hormones of a teenager, emotional maturity of about 6, and temper of a toddler. It's not easy to be around this person - but it's a lot harder being this person.

And thanks for the best wishes As well as for the time and effort taken to reply - it means a great deal.

P.S. I will reply in turn to everyone who gave up their time and put in the effort to post, but it might take a while as I can only be on here when DD is safely occupied elsewhere and does not want me (she is in the bath atm). So please no-one feel I am ignoring or not valuing your contribution

Plans_all_plans

It doesn't mean you're a cr*p parent Allegra! You are doing your best in a difficult situation. Is there a support group near you for parents of children on the autistic spectrum? Maybe you could contact the National Autistic Society for advice on groups locally? Someone may have been through similar issues and may have ideas on how to get her to open up, or at least use the laptop in a family area.

Do her friends/friend's parents now know she has Aspergers? Or is it still a secret? Has you daughter expressed to you that she has previously felt suicidal, like she said in her email to her friend?

It may be like GlasweJen says and it's just your daughter trying to emulate her friend's sister's behaviour, but I think you should tread carefully because it could easily spiral from 'copying' to something worse. Wait to see the doctor and take it from there. Try not to panic. I think you shoudl try to get some outside help in the form of a support group though as it could benefit both you and your daughter.

weezl74

Hello Allegra,

I am so sorry to read about this difficult situation, which it sounds like you are handling admirably.

I'm guessing that you have quite a good knowledge of DDs best friend, what she is like as a person.

If she does feel that DD has behaved hurtfully and somehow communicated disrespect for her sister's illness, or communicated 'woodenly' or in a way which doesn't sound real, I'm wondering what would she need to make things 'right'.

Do you get the feeling she is a words person, or does she value actions and gifts?

I am not meaning to imply that I think your DD has done something wrong, but perhaps this girl still needs something to put things right, in her own (inexplicable teenage )mind? Your DD is not in the wrong, but maybe by apologising for hurt accidentally caused, could reinstate a friendship that is the lifeline for her.

I notice 5 types of coping with a difficult world that your DD has: honesty with you, honesty with friends, aversions to eating with people and some kinds of food and an escalating sense of ED, self-harming, time privately on the internet.

Of those 5, friendships and her relationship with you are (no kidding!) the healthy ones and so I am struck most by the loss of this friendship, and the lifeline it represents, and about the impact that may have on her unless rectified. I guess you are concerned that without this key friendship she will use the other coping startegies more?

You are very articulate, on this and the other threads I know you from, and so I was wondering if DD would let you help with drafting a letter to her friend, maybe apologising if the way she has described her eating etc has accidentally upset her? If she has sometimes sounded 'unreal' in her explanations, would you be able to hear that and gently shape the words so it doesn't read that way? Does the friend just need to hear DD say, your sister's illness is never something I meant to take lightly (or something) I don't know.

Alternatively she may not be the kind of person where a letter would help, could your DD give her a thoughtful gift?

In summary, as I read you OP, I wanted to ask you, based on your understanding of their friendship, and of your DD, can you think of anything DD can do to try to appease/placate her upset friend?

I hope they are helpful questions.

Lots of love,

Weezl x

GlasweJen

OP, I would avoid removing the laptop at all costs because this would be a major disruption in the middle of other major disruptions and that could lead to melt down.

You could clamp down by changing the parental settings on the laptop, someone from the techie forum would probably be able to help you with this and just explain to her that you don't want her accessing pro-ana and pro-mia sites while all these problems are going on with friends sister.

You sound like a great parent, it would be the rubbish parent who removed the laptop and left their aspie to melt down.

Allegra

GlasweJen wrote: »

Hi OP
I (was) a closet HFA sufferer on the boards until very recently (man problems, i'm 24 and clueless lol).

I think it can be quite common for autistic people to be very controlling with food, it just doesn't mean the same to us as it does to everyone else. I have never found food to be comforting or enjoyable because it's just different forms of getting energy into your system. Food is still quite alien to me and I can go for long periods without eating if no one reminds me.

With this in mind I'm wondering if your daughter is to some extent emulating her friends sister in that your daughter probably doesn't miss food, might see the whole exercise as being rather pointless and has misinterpreted someone else not eating as a proper choice rather than a mental illness?

The email may be a reaction to everyone elses reactions, her friend suddenly thinks that she's an attention seeker, her mum is taking her off to the doctors and she's stuck wondering how she managed to mess it up so much when she thought she was doing the right thing.

I would keep the appointment with the doctor, take your daughter along and seek help for both the anorexia and the problems related to Aspergers as well, it may benefit your daughter to meet other aspies that she can be herself around instead of constantly having to put on a persona around her "normal" school friends.

I'd probably talk to the friends mum, not about the email or her daughter though. Maybe something along the lines of "thanks for the heads up about DD's eating, it's quite difficult for her because she has AS and she's uncomfortable sharing her condition with others". I'd not tell her friends directly but I'd definitely get her to talk to her friends about it once this has blown over a bit (at 13 it will likely blow over soon).

I think you're doing great so far OP, remember to stress the importance of food without making it seem like a chore (find out what foods are good for the skin, hair, nails etc. that will keep your daughter interested without it all being about weight).

Hopefully this will be a teething problem rather than a full blown catastrophe.

Hope all that makes sense, best of luck OP!

Hi Jen, and thanks for replying - and yes, your post makes perfect sense to me. You are right, food to her was never what food is to most people - she just does not like eating - except for chocolate. And I think she has always felt very, very resentful that the one thing she actually enjoys eating is the one thing that is actually bad for you (you would not want to see her on a sugar high, or in a resulting slump, lol). We dealt with this for years in a variety of ways - dogged persistance with introducing new foods, time and effort spent, as you suggested, in reasearching nutritional benefits of different foods, her involvement in choosing and preparing and even growing the foods she might fancy eating.... As Chrissy suggested - it was still always a struggle, but I expect that, without that effort put in, it would have been even worse. At least I can say that over 13 years she has consistently, on a daily basis, taken in sufficient nutrients to keep her healthy, and this is the thing that is still my primary concern. Sure, the mental attitude to food has to be addressed, but in the meantime, I do have to concentrate on trying to keep her healthy. Apart from anything else, falling ill will make it so much harder for her to cope even with the ordinary, let alone anything out of it.

I know what you mean about things blowing over quickly at 13 - luckily, we have found time and again that this does happen - it's just that, in this, DD is her own worst enemy - she is the one that finds it hard to let things blow over ! If she feels that her friend has call her a liar, she will find it tremendously hard to forgive and forget. So at the moment, she wants "proof" that her friend does not think her a liar. My gentle suggestion that at the moment she is not really in a position to demand anything in regard to the friendship was met with quite an impressive vehemence

And thanks for confirming that not taking the laptop away is not a disastrous course of action. She will not let me install parental controls on it, which is why I am continuing to concentrate on a) trying to convince her that staying off PrettyThin would be a good thing for her, and b) keeping her busy and away from the laptop as much as I possibly can.

Incidentally - you would not happen to know of any online forum specifically for teens and young adults with AS and HFA ? As on reading the site that got her so hooked on ana-behaviours I think I can identify what attracted her to it so much - here is a whole world of kindred spirits, people who feel alienated, don't fit it, are always other to the people around them. This is the same sort of kindred feeling and support she could get from a place where AS people hang out, only without the unshakeable belief that not eating and losing all the fat and muscle from your body would make everything right.

Allegra

Plans_all_plans wrote: »

Do her friends/friend's parents now know she has Aspergers? Or is it still a secret? Has you daughter expressed to you that she has previously felt suicidal, like she said in her email to her friend?

She has said in the email that she has it, yes. The first time ever that she has admitted to it, even to herself, I think. At the time, I saw this as a huge breakthrough, but now, six or seven weeks down the line, we are no further with it She still does not allow me to talk about it with her, but at least the reaction is now far less aggressive than it used to be in the past. I don't know - perhaps we are getting somewhere, very slowly.

Because I do believe that once she accepts the nature of her disability, she will finally be able to feel a lot better about herself. I personally think she's marvellous, and I keep telling her that, but she won't believe me.... Because there is a world of difference between "My social skills are carp and I get it wrong with people half the time" and "I have a condition which means that the social skills that most people learn instinctively have to be learned intellectually, which is a blinkin' struggle, yet I STILL manage to get it right at least half of the time ". Just as there is a world of difference between "I am so useless at subjects like drama and PE" and "I have dyspraxia yet I have still managed not to break any bones in PE or chop off my hand in DT".

As for her friends and her friends' parents, AS has not been mentioned at all since, but I do not know if this is because it got lost in all other stuff in the email that resonated with them far more, or because simply it's not something they feel they can broach themselves.

I think I will be phoning DD's best friend's mum, if nothing else, just to ask for how she went about getting help for the elder daughter, as knowing what is likely to happen will mean that DD is far more likely to cooperate, and I expect that AS will probably get mentioned in the course of the conversation. This ought to be enough to convince her that no, DD is not making this up, and yes, we are actually very worried, and no one is making fun of what your family is going through.

Allegra

weezl74 wrote: »

Hello Allegra,

I am so sorry to read about this difficult situation, which it sounds like you are handling admirably.

I'm guessing that you have quite a good knowledge of DDs best friend, what she is like as a person.

If she does feel that DD has behaved hurtfully and somehow communicated disrespect for her sister's illness, or communicated 'woodenly' or in a way which doesn't sound real, I'm wondering what would she need to make things 'right'.

Do you get the feeling she is a words person, or does she value actions and gifts?

I am not meaning to imply that I think your DD has done something wrong, but perhaps this girl still needs something to put things right, in her own (inexplicable teenage )mind? Your DD is not in the wrong, but maybe by apologising for hurt accidentally caused, could reinstate a friendship that is the lifeline for her.

I notice 5 types of coping with a difficult world that your DD has: honesty with you, honesty with friends, aversions to eating with people and some kinds of food and an escalating sense of ED, self-harming, time privately on the internet.

Of those 5, friendships and her relationship with you are (no kidding!) the healthy ones and so I am struck most by the loss of this friendship, and the lifeline it represents, and about the impact that may have on her unless rectified. I guess you are concerned that without this key friendship she will use the other coping startegies more?

You are very articulate, on this and the other threads I know you from, and so I was wondering if DD would let you help with drafting a letter to her friend, maybe apologising if the way she has described her eating etc has accidentally upset her? If she has sometimes sounded 'unreal' in her explanations, would you be able to hear that and gently shape the words so it doesn't read that way? Does the friend just need to hear DD say, your sister's illness is never something I meant to take lightly (or something) I don't know.

Alternatively she may not be the kind of person where a letter would help, could your DD give her a thoughtful gift?

In summary, as I read you OP, I wanted to ask you, based on your understanding of their friendship, and of your DD, can you think of anything DD can do to try to appease/placate her upset friend?

I hope they are helpful questions.

Lots of love,

Weezl x

Food for thought, Weezlie, as always :A

The answer to what she needs to do to placate her friend though is that she has to stop talking about food issues, self harm, and feeling bad, as the friend has too much of that at home and has been used to, for years, DD being there as an outlet to talk about this. Now this has turned on her, and DD wants her to listen when she has those issues to talk about.... Yet she can't.

So DD is really peeved with her, and having, well, tact issues, can not help showing it. You are right that she needs those friendships as a lifeline (when she falls out with friends, school for her becomes such a nightmare that she refuses to go, and although I managed to get her in every time so far, if things get worse, I just won't be able to - she is now just too big, and I am too physically wrecked to pick her up and drag her bodily to the bus stop while she is kicking out and screaming at me, which was the case regularly two years ago), yet she wants from them what they can not offer, and they want from her what she can not do.

Personally, I think that teen age should be banned Nothing in life should be so ruddy traumatic, ever. A bad design fault, if you ask me.....

Incidentally, Weezlie, I meant to ask - this claim that DD's best friend's mum phoned a counselor about the email that DD sent and was told that this sounds all made up and was probably culled from a website where you just fill in the blanks - does that sound to you like something that could ever happen ? This email was an 8 page word document containg extracts from DD's diary over the few weeks preceding the email, and commentary in between the extracts. I read it, and have never doubted for a moment that it was anything but DD's own work. And I just can't envisage a situation where someone could even read out this lengthy tome over the phone, and even if they did, that a responsible counselor would, based on that, say that this child is just attention seeking and to ignore it.

Because, what DD needs now more than anything, I think, is to hear that no mental health professional had read her deepest darkest thoughts and branded her a fake. I think even the friendship issue takes a back seat to that. And I can not really phone this woman and ask outright, because if this was something that was made up by either her daughter or mine... Well, let's just say that I am not doing it, and leave it at that !