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

(57 Posts)
bigonsmalltalk Mon 04-Jul-11 12:12:58

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.

bigonsmalltalk Mon 04-Jul-11 12:20:55

I should add that I know its a well known phenomenon for girls to hide and suppress AS but DD is so bullying and demanding that I feel like I'm in an abusive relationship. If this was a marriage I would end it.

Its the concept of a controllable, "switch it on and off when I feel like it" disability that I can't get my head around.

niminypiminy Mon 04-Jul-11 12:43:58

bigonsmalltalk in my worst despairs ove Ds1's rudeness and negativity (see mood swings thread currently running) I have this thought too. If I stopped doing whatever toxic thing I do, if I could only get out of these patterns, if I was a better parent, maybe it would all stop and get better.

Are you a single parent? One of the things that stops me from getting sucked in to the negativity is knowing that my DH also has a really hard time with DS1. If it is just you it is really hard to get an external view on the situation.

The kind of behaviour you are describing is really common, as far as I can see, with children with AS. Bear in mind that they cope in the social world of school all day and let out all the frustration on you, their best beloved (though, blimey, often it just feels like they hate and despise you).

There aren't any simple answers, and if there were, you'd already have thought of them. I guess stopping doing some of the things that you are doing (hair, picking up clothes and so on) might establish some boundaries about which things you are prepared to do and which you are not. Have you come across Pathological Demand Avoidance Syndrome? Everything you have described sounds reminiscent of PDAS behaviour (the NAS site has some information about it here.

That's not much help, is it? Can I offer you a brew instead?

bigonsmalltalk Mon 04-Jul-11 12:55:56

Aw Nim, thank you. brew for you too!

Thank you for your reply. I was scared people would think I was a troll as I'm seeing AS in an unfavourable light at the moment. To tell the truth I am actually in complete despair. I've really worked hard at educating myself about AS and I see other kids with AS at our support group. But my DD is so so good at camouflaging that I feel like I'm going mad.

DH works long hours and is fantastic. He says he doesn't know how I stand it as DD drives him mad in the little time he spends with her.

We are such an unhappy family, but no one knows because no one sees the meltdowns. Just going out is a nightmare as DD doesn't know how to get ready and resists getting ready. Yet she'll do it for other people. I feel like such a failure and she just seems to hate me with this attitude she has to me. (I am horrible for making her go to school etc etc).

Re PDA. Yes, I'm aware but CAHMS multi disciplinary team didn't pick it up after many long sessions.....

pedalpants Mon 04-Jul-11 12:56:59

could you go on a mini-break and see what happens?

bigonsmalltalk Mon 04-Jul-11 13:05:17

I have left her overnight with someone before and that someone can't see anything wrong with her. Its why I'm so alone with this. I tried to film her recently at her worst, but on seeing my camera she instantly stopped her meltdown. She has a disability but it is not linked to her IQ, she is not stupid.

bigonsmalltalk Mon 04-Jul-11 13:07:30

Also she would be very angry with me for going on a mini break. Her attitude is "why do you get to go away and I don't. You are horrible for doing this"

niminypiminy Mon 04-Jul-11 13:08:26

Agree with pedalpants though we need to be clear it is YOU that needs the break -- from DD. I have often thought that a night in a travelodge on the A14 would feel like heaven if DS1 was somewhere else.

Can you find the bit of you that is prepared to say ok don't brush your hair/go to school/get ready to go out -- and just leave her? It's one of the great mistakes that people who don't know what we go through much about it make that they think people with AS can't be manipulative. Well yes, they bloody well can. And they're not deterred from it by seeing how hurt and exhausted you are either.

(I know I'm sounding negative here, but we had a vile weekend.) Think of yourself and leave her to face some consequences? Easy to say and hard to do, I know...

justaboutWILLfinishherthesis Mon 04-Jul-11 13:11:09

Message withdrawn at poster's request.

IndigoBell Mon 04-Jul-11 13:15:09

There is no way she would have got a dx if it was you and not her. Dxs are very hard to get. They always look to check it's the child and not their home life.

I suspect that she can only hold it together for so long. If she had to survive without you for a whole week I doubt she'd be able to keep the act up.

Also you don't know what she's like when you're not around. Her ASD is probably worse than you realise when she's at school - but school don't notice because they're not in tune with her and don't know much about ASD.

EllenJaneisnotmyname Mon 04-Jul-11 13:21:47

Big, has it always been like this or has it got worse since she's been in secondary? Could it be a combination of the AS and the horrible teenager phase? I can't do much right as far as my NT 13 yo DS is concerned. Obviously, he doesn't have the AS on top, but he is apparently well behaved at school, my family think he's lovely but he just grunts at me and DH and argues just for the sake of it! It sounds like your DD is smart enough to play a bit on her DX, but it's very hard teasing the AS behaviour from the controlling behaviour and the teenager behaviour!

Are there any compromises you can make? Brush her hair only on Mon, Wed and Fri, so it doesn't get too bad that she gets bullied for it, but leave her to it on the other days and W/E? Only wash clothes that are in the wash basket, get her to pick them off the floor just before you do the washing? Even if it makes a bit more work (and moods) in the short term. Sorry, probably no real help and nothing you haven't already tried.

I really feel for you, life doesn't sound much fun at the moment, something will have to give.

bigonsmalltalk Mon 04-Jul-11 13:25:46

Wow nim, justabout, you totally get this.

I feel better for that one sentence alone (Its one of the great mistakes............)

I do need a break, but like many carers I won't get one. DH is fantastic but I can't expect him to have DD on top of work commitments. He is shattered too.

Maybe I just need to understand that AS is a disability that will affect close relationships the most.

I try to support DD with social opportunities and we have made some progress. But her family relationships will never be good will they, because she has no empathy. I guess I'm still feeling bereaved. Usually when you are good to someone they are grateful. But that's not possible with her. I recently told her I wasn't going to do everything for her and she just lays on the floor, curled in a ball. So then I can't get her to school and I have to explain it and they tell me to support her and get her to school and that that is the most important thing. So I get bad mother points if I try to encourage any independance.

justaboutWILLfinishherthesis Mon 04-Jul-11 13:29:55

Message withdrawn at poster's request.

bigonsmalltalk Mon 04-Jul-11 13:33:46

Yes, she did more for herself at primary and was very clear on my expectations for her behaviour.

Since secondary everything has fallen apart. I'm tempted to home educate and have heard a few stories of breakdowns in year 8/9 from AS parents sad

Indigo, you are right. I don't think she could hold things together for long. She needs me as a kind of mental punch bag......

How the hell am I going to get through this?

IndigoBell Mon 04-Jul-11 13:38:41

In this case I don't think HE is a good idea - because she appears to be doing well at school, and you need the break from her.

Maybe start with only one thing you absolutely won't tolerate.

Her being verbally abusive of you. Do all the being a servant to her. But if she is rude to you totally stop doing anything for her until she stops it?

bigonsmalltalk Mon 04-Jul-11 13:38:41

Good point Justabout. I hadn't thought of it like that.

(When we do talk about doing her hair she says its my fault as I haven't taught her how to do it properly. I just live in fear really. She's taller than me, big and strong and she believes in an eye for an eye.... If I embarass her with school by forcing the hair issue she will make sure I pay)

niminypiminy Mon 04-Jul-11 13:40:18

"Usually when you are good to someone they are grateful. But that's not possible with her. " sad

It probably is important to get her to school, but it's also important that she's independent. The priorities of which one is more important might sometimes have to change (after all school are always going to say get her here because they have attendence figures to worry about). She will one day leave school and hopefully will one day live independently. For that she will need to get dressed on here own and that is something the school is not in a position to teach her.

She probably does love you with an intensity which would startle you, but it's impossible for her to express it (and she might not imagine that you would like her to anyway). That's cold comfort, I know.

I still think that getting a break sounds like a good idea (can the someone who has looked after her before for a night do so again and you and DH can break out the travelodge?)

EllenJaneisnotmyname Mon 04-Jul-11 13:42:10

Do you think she's finding holding it together in school so hard that she's so awful at home? If you home Ed you hope she'll be more consistent throughout the day? The downside might be that she'll feel so secure that she'll try to control you all day long. I wouldn't be able to get my DS2 to do anything at home. Home is for playing/relaxing as far as DS2 is concerned and school is for working (under protest.) I suppose the difference is that he doesn't hold it in at school much.

niminypiminy Mon 04-Jul-11 13:43:57

to add -- I think IndigoBell's ideas sounds like good ones. I have been known to walk out the house (being careful to take keys) away from DS1's rudeness. He hates that but it shows I won't listen to it.

AttilaTheMeerkat Mon 04-Jul-11 13:46:08

I think that you're her safe space; the person she feels the most secure with so she can take out all her frustrations on you. School life for her is bordering on the intolerable and she could well end up being bullied or perhaps what is happening there now feeling socially isolated from her friends.

Keeping the DX a secret now from secondary school will neither do you or her any favours. I take it as read too that DD does not have a statement. I would apply for one of these from your LEA; it can be used for social/communication needs.

Many children with AS at secondary can suffer particularly badly because their needs there are just not met. Secondary schools on the whole are big and very impersonal places. They are quite different from primary school and the pupils are expected to mainly manage their own time. Lunchtimes can be particularly difficult.

A Statement may well be one way to help her at school; it would make the school sit up and actually acknowledge her additional support needs. No statement there in particular equals no support of any real value.

bigonsmalltalk Mon 04-Jul-11 13:47:30

I agree Indigo - its how I got into this mess. We have put school first. We've got G&T stuff going on at school for her, but they will never know what I have gone through just to keep her going every day.

I have found that joining forces with DH is very effective. He has also made it clear that he will not tolerate her taking things out on me.

But if you really really push her like this and stop her releasing tension on me, she will talk about the utter torment and hell that she goes through every day. And the terrible lonliness and the isolation and being invisible to everyone at school and how she can't see the point of going on and wants to kill herself. She talks about how baffling and incomprehensible the world is and you end up feeling so sorry for her.

But a tiny part of me wonders how much I'm being manipulated.

AttilaTheMeerkat Mon 04-Jul-11 13:50:47

Is she still under CAMHS, what has happened re them post dx?. Will she be willing to return to CAMHS?.

CAMHS never to my mind give out such diagnosis without good reason.

She is having to learn to conform when she is in polite company; it all falls apart though when she is with you. This is perhaps because she feels no need to have rigid conformity when around you.

AttilaTheMeerkat Mon 04-Jul-11 13:54:15

Being in the G & T group is just putting even more pressure on her. Children in such groups to my mind also need support anyway even if they do not themselves have any special needs.

I think your 3rd paragraph is very telling actually; this is all characteristic of AS.

I would seriously look at getting her a Statement now as that document may go some way to improving her life at school. It will acknowledge her additional needs.

justaboutWILLfinishherthesis Mon 04-Jul-11 13:55:42

Message withdrawn at poster's request.

bigonsmalltalk Mon 04-Jul-11 13:56:59

Its only a secret from neighbours/acquaintances. Its taken me 18 months of phoning up the school to get interventions put in place for her. I think they get it now, but no one thinks a statement is appropriate as she does really well at school. Girls with AS really are different to boys.

She does everything necessary to keep invisible and get people off her back. So the comments I get from school are "Lovely girl. So polite. You'd never know would you?" After a fight I'm very pleased with what school are doing for her. They have many interventions and strategies.

Its our home life that is the problem.

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