Am I the Aspergers enabler? Would it exist without me?

[bigonsmalltalk]

I'm hoping for some advice here from people who know about AS.

DD, 13, dx'd AS by CAHMS 18months ago, switches her AS behaviours off at school where she is a model pupil with excellent academic achievement. Switches her AS behaviours off at family gatherings so although extended family know the dx they don't believe it and think we are making it up.

At home she takes everything out on me to the point that I wonder if her AS would exist without me? I seem to be the enabler of her meltdowns and tantrums. I appear to be the facilitator of her autism as its only around when I am there.

The final straw was this weekend. DD has had Occupational Therapy as she couldn't do her own hair. I resigned myself to brushing and combing her hair every day as she "can't" do it and the OT didn't actually solve this problem. Then, someone took DD swimming and she did her own hair afterwards. When I query this she says "its different when I'm out".

So now I feel like I am losing faith in AS as a dx. At home I try to support DD to keep her stress levels down so she can keep attending school and doing the homework. Allegedly, she "can't" pick her clothes up off the floor, wash, do hair, get school bag ready, get dressed etc. She treats me like a servant and I'm reaching the end of my tether with her. If I try to get her to do things and behave in certain ways she makes sure she gets revenge on me as she does not believe she can ever be in the wrong.

DD wants her dx kept secret as she fears being bullied at school. So, if no-one has noticed her AS and she is able to switch it on and off as required, does it actually exist?

I have spent years reading the books, internet and have attended a support group since dx, but it seems to be me that is the problem as DD is able to function in the world unless I am there.

At home I have to entertain her as she has no social life. If I stopped doing this would she forced to conform and would the AS disappear?

Thank you for reading this. I am so confused.

Hi bigonsmalltalk,

re your comment:-
"think they get it now, but no one thinks a statement is appropriate as she
does really well at school".

BTW what year is she is; lower years 7/8 for instance?.

Ignore the school and apply for the Statement asap. The school clearly do not understand the machinations or implications of AS at all if they are uttering such crap.

Argh, I just knew they had said that or somthing along those lines to you!. It's complete garbage; her AS will impact her learning abilities even though she is in the G and T group. Her life at school is well on the way to breaking down completely. She may not be able to do exams at all if her additional needs there are not met.

I have two girls with AS who are amazingly adept at covering their symptoms and there are many unbelievers amongst friends and family.

I seem to swing between feeling that I need to make their life as easy as possible to reduce their anxiety to trying to get them to be as independent as possible because they live in the real world. There are arguments for doing both and nobody ever tells you whether you've hit the mark or not.

My philosophy is generally to try to get them to be as NT in their behaviour as possible without making them too unhappy. I listen to what they find difficult but we work out a compromise rather than me giving in. So I don't expect either to tidy their whole bedroom because that is too overwhelming by I will give them one job they can manage while I do another one so they are contributing what they can. If they choose not to do their bit I don't do mine.

They know that I don't make empty threats but I also pile on the praise whenever possible to help things along. I ignore meltdowns as far as I can and expect them to pick up anything they have thrown around and apologise for damage they have caused.

It is frustrating that your DD could do her hair on that one occasion but it may have been at a very high cost to her. Although she could repeat it at home she may not be able to face trying because of the emotions involved. That is the reason my older DD (14) can be so much more independent in school than at home and it took me a long time to work it out.

You clearly feel that the balance is wrong at the moment and that your DD is taking more from you than she needs. That isn't healthy for either of you so I think you need to increase her independence very gradually but firmly.

I would start by talking to her and working out together one very small step towards independence that she could achieve. If clearing all her washing away is too much perhaps she should start by just putting her socks in the laundry each day. You continue to move the rest but make sure that she takes her sock each day. Then you can gradually increase it in manageable steps with her cooperation. If she has chosen each new task herself she is more likely to cooperate. If a task is too big keep making it smaller until it is manageable.

Alongside this allow her to build up some sort of small reward for doing the task and heap praise on her to boost her self-esteem.

She may be scared of this process because it is moving her towards being independent and taking responsibility for her life and she may not be able to cope with that idea. Keep reassuring her that you will take it at her pace, that you will agree each new step together beforehand and that you will always be there for her to fall back on no matter how old she is.

Sorry this is a bit of an essay and you may well already be doing all of these things but I know how hard it is and how much you beat yourself up for not knowing automatically what to do.

Good luck

I tried going back to CAHMS. They only do the dx. Psychologist kindly saw her and could only offer the suggestion that she writes some stories to vent her feelings. But in typical autistic fashion DD explained that she can only do writing at school not at home.

Just about - you are really getting me thinking and making some really insightful comments re my situation. Thank you.

bigonsmalltalk outside school as shes lonely does she goe to any clubs? sea cadets are fantasic for dcs with AS boys and girls go and there very welcoming she wont be the only one at cadets with AS she would get to do lots of physical fun acctivities and they teach them respect ect its pretty structured fun iyswim so is ideal my husband is an officer in charge of a unit hes ex royal navy himself and is also AS the royal navy and cadets what really helped him come out of his shell and really learn to interact with peers, they do sports, cooking, swimming,archery, kayaking, rowing, making rafts all sorts and they are encouraged to join in not forced to do anything they are unhappy with, when we had a new entry start who was AS we let her mum come with her untill she was happy she could be left , she has had a couple of meltdowns at forst but as im a mum of a ds with ASD i knew her mum had said just leave her to it and she went for a walk on the parade ground (we watched her ) and finally we shouted out it was her turn to do something and she returned much calmer i think if she needed a space to be alone for a moment its not to hard for them to do that for her, but obviously there are other types of club where it may take a while but she could get an interest going and make some friends i also have a friend who runs a gym club he has a SN night for trampolining its very popular maybe with other people like herself in this relaxed setting she might make friends sounds like thats whats causing her to take it out on you she sounds like shes very unhappy, anyway just a though plus when she does get used to it you get a bit of respite its twice a week and often weekends too so would give you much more time to relax a bit

Sorry x-posted.

Thank you attila. What would a statement achieve in these circumstances?

Wise, wise words Al1son. I will try that.

Thanks driveme. She is starting Aircadets and enjoys a weekly support group for AS.

Her loneliness is caused by other people having interests that she does not consider to be valid. She could have friends, but because their interests are inappropriate (music, makeup, sport etc) she will not entertain being friends. Her distress stems from other 13 year old girls inability to be obsessed by pokemon. Its their fault.

This is what's getting to me. Her loneliness seems like an active choice sometimes. But deep down I know this is what AS is all about.

Alison has just reminded me of 'backward chaining' (or something like that) - where she completes the last bit of the task.

So if brushing all her hair is too much for her, could you brush almost all of her hair, and just leave 2 or 3 strokes for her. Then when she can do that, you leave 4 or 5........

Thank you Indigo. I have not heard of that. It sounds like an excellent approach.

Off on a school run now.

oh wonderful you may find after a while shes a changed person as all the cadets strive for is making them independant happy well rounded members of society and are usually very inclusive so i do hope she likes it all the activities like camping ect and the boys and girls all mix at cadets so shes quite likely going to find someone like my own DS at cadets (ASD)who loves
Pokemon too i relly think it will be the making of her (as they say in the forces ) i really think her loneliness and the tension at home are whats causing it if she makes at least one or two friends there the heat will be taken off you a bit i read through i ddint see how old she is but yes girls at school are so Bitchy ive two teens in MS too and my DD says she has more male than female friends because of this if you dont conform these girls really do ostracise you and its all about clothes boys music make up just the things shes obviously not interested at all so air cadets sounds just the ticket, good luck

Hi bigonsmalltalk

Statements are not just for academic needs; they can also be put in place to work on social/communication difficulties. A statement is the surest way she will get such help with that in secondary school.

As I stated before, her AS could well go onto impact her learning ability even though she is in the G and T group. Her life at school is well on the way to breaking down completely; she is being socially isolated by her peers. She may not be able to do exams at all if her additional needs there are not met.

I have been reading this thread with interest, my Dd3 is 8 and probably has AS[no dx yet].

She is another one who works hard at masking her difficulties at school and she does a good job of it too.

The flip side to this is that she was physically and emotionally drained when she came home. We have recently moved her to a more inclusive school and she is allowing herself to be herself a little more.

She takes all her problems out on me and our house can be like a war zone, she has a really bad relationship with her older sis[15] who makes absolutly no allowances for her.

I also have Dd1 [22] also undx'ed, she has many AS issues although she now lives independently and copes quite well[most of the time].She found 3 or 4 really good friends at school, they stuck by her and actually seemed to enjoy her quirkiness. She was really good at sport so I think that helped.
She joined aircadets after guides which she didn't enjoy. She loved Aircadets and did really well there. She particularly enjoyed learning to use the radios and learning the sillouettes of the aircraft. I hope your Dd gets as much out of it as mine did.

Good luck, sorry no advice other than be kind to yourself and remember that she takes it out on you because she knows you will keep coming back for more, oh and don't forget that she probably has no idea how she is making you feel. We have to spell it out to Dd1 and Dd3 many times about how their behaviour makes us feel.

hi. Please dont be so hard on yourself. As others have said, your dd vents and rages at you cos you are "safe",you dont judge,you are you and the one person she can completley be herself with.
My ds is 15 and like this. As someone else said, our house is also a war zone, but to people that dont know him, he is "such a polite young man". Ha, Ha, Ha! But, as above, he cannot keep the act up, and within a few weeks, he has well and truly initiated himself to everyone!
Our dc have to learn coping skills in social situations from very young, so by the time they are 13, 15, they are quite expert at it.
Never mind what family and friends think, you know your dd and thats enough.
You must though, as others have said, start moving her to be as indepedent as possible. She can pick her clothes up-of course she can-she would just rather you did it. My ds is the same. So, now, I ask him to bring his washing down, or it doesnt get done. When your dd sees you are serious, she will do it.
My ds is not great on the hygene front either. He can shower, brush his teeth etc. he chooses not to.(He is also academically bright, but struggles socially and emotionally). So, we ask him, then hard as it is, we leave him to it. He sprays aftershave on and gels his hair, then thats him ready! I think at this age, a reminder from their peers that they need to wash, is far more effective than a nagging from us-lol.
Lastly, you must not keep trying to please her. What I mean is, it is alright to say no and put in boundaries. We do this with NT dc, it is just as important for dc with SN. It doesnt matter what she thinks about you going away-you are the adult. As long as she is well looked after shell be fine.
My dh and I have had overnights a few times now, and we really enjoy it. We can concentrate on eachother, without having to think about the dc. Try and do it-a njght in a Travel Lodge/ B&B/cheap Hotel-you deserve it. You need to take care of your self too-something that took me a looong time to learn, but it is important, or you will reach "burn-out".

You are not the enabler - you are the wonderful person who really understands her and loves her anyway.
You are the person that has always been there and she knows you will always be there for her.
You are the one person that she can flip out at and you love her just the same.
You are the person who what ever happens will always be there to help to put it right.

Are you also the person who feels guilty and somehow responsible because of her AS and (possibly) overcompensates sometimes and lets her get away with stuff you normally wouldnt (if it was not for her AS)? ie "At home I try to support DD to keep her stress levels down"

Have you forgotten that she is just a stroppy teenager (just like you were once i am sure) who pushes the boundaries because that is what 13 year old girls do?

The harder they fight you the more they need you to be calm and consistant. This is almost impossible to do if you are at the end of your tether and you really need a break (unless of course you are super-human).

Getting a break for yourself will help your daughter - You need to be able to recharge your batteries from time to time so that you can carry on doing the fantastic job that you have been doing for the last 13 years.

Please dont be so hard on yourself. In some weird and bizzare way it is a compliment to you that your DD can hold it together outside the home but is able to 'relax' at home with you and be herself. It is better that it is this way around than the other way around surely.

Remember success is not a destination but the journey - you are doing a wonderful thing for your daughter - give yourself a break to enable you to keep doing it

I'm the OP and just wanted to come back to this thread today and say thank you for all the wisdom and suggestions that have been posted on here.

It is wonderful to find people who live with AS and understand the condition.

I will take on board the advice and enjoy re-reading the support I have received. I don't get any support in RL so your encouragement is very much appreciated.

Yes, I really agree with that. This thread has made me reflect again on my own struggles with DS1 and given me lots of new things to think about.

bigonsmalltalk - I really feel for you, we have been through a similar situation with our ds who is 15. Most people really dont believe that there is anything wrong with him, if only they could see what our home life was like. How I dreaded ds coming home each day, but was scared if he was 5 mins late, as he kept talking about wanting to die. Things have slowly got better since his dx when he was 13. I just kept telling myself that he was holding it together in school & could lash out at me, as I was the person he knew would never give up on him or stop loving him. It was a nightmare, but thankfully he is finding school a bit better now that he is streamed and is away from some of the nastier kids. Also walking to/from school rather than getting the school bus, seems to give him a chance to chill out before he gets home.
I have found routine to be the most useful tool for us, with regards to him getting himself ready / personal hygiene etc. It took a long time to build up, but has really helped to cut down on the daily arguments.

Pokemon is my son's thing as well. He does spend a lot of time playing online games, which we are not particulary happy about, but at least he is interacting with other people online, so does not feel quite so alone.

We all understand, OP. And can associate with many of your points.
I struggle with even liking ds1(7) sometimes, when I consider what a large part of my life/time/thoughts/energies/emotions go into him/for him/ to him etc.
We are here to support you and listen to all you wittering and whinges

You've been given so much good advice on this thread that I can't really offer much other than to say that you are very much not alone.

It is almost like DS can just about get through "coping" at school that when he comes out he bursts - both with non stop talking / flapping etc if he has had a good day or with a meltdown if it has been bad. And bad can be anything from having a supply teacher / the lunch menu being different to advertised or being bullied

I would second what has been said about a statement - DS has a statement based purely around non academic stuff, as academically he is good, but his anxiety; constant need to be re-focused; poor organisational skills; lack of social empathy etc all impact on his ability to access the curriculum.

This is just to say I really sympathise. My daughter's AS diagnosis is fairly recent but took years of pushing for help. Now we've got the 'label' I'm still getting used to the fact that she's officially autistic and driving myself nuts trying to figure out what's AS, what's eccentric and what's stroppy 9-year old.

Part of the problem is that everyone sees her differently, so I'm constantly questioning my own instincts. On top of that her dad (we're divorced) maintains there's nothing much wrong with her -- they spend weekends just the two of them so he doesn't see her social difficulties and thinks I'm exaggerating/being overly disciplinarian or hysterical. I seem to spend half my time shouting at her and the other half wiping away her tears and telling her I love her (then going off for a cry myself!)

She's very aware that she's different and I'm frightened all the time that I'm getting it wrong if I respond wrongly to something that's not AS or fail to recognise something that is. We're both on a journey together I suppose, and though there are times she drives me mad I can also see that she's terribly fragile and scared herself much of the time.

And then there's the process of trying to get her statemented ...

I've started blogging about it all to stay sane. If it's any help here's the link: courage-is.blogspot.com. You are not alone!

mumslife

I would seriously consider now applying for a statement for your son before he gets into secondary school.

My son is at secondary school and it is a totally different ball game to primary. They are expected daily to be organised, carry their coats and bags around with them (his school has no lockers) and be able to move between different classes.