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karenann68

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hi

my daughter has just turned 19, she was recently diagonosed with aspergers. it took over 18 months to get the formal diagnosis through, through her entire school life she suffered chronic bullying and would always be reluctant to go anywhere, and if we did as soon as we arrived she would want to go home straight away. i put these down to just the way she was, alot of people including most of my husbands family made cruel and unkind comments about her saying she was "sub normal" or "there is something weird about E"

 

the diagonsis came about by an art thing she used to go to with a boy at school, it was a young centre that dealt with many young people many with housing or homelife problems, one of the ladies that worked there suggested my daughter saw a child psychiatrist who mnet her and then us and did this question and answer thing, and comfirmed that she did have aspergers and said we should apply for DLA, it took nearly a year to get the report from him, in which time my doctor, who was fabulously understanding and very good took early retirement, so i took her to talk to another GP as they were short i couldnt choose a lady GP and we saw another doctor that she didnt know, she really didnt like it, but i was with her to reassure her, he was not at all helpful, i explained the fact that my daughter didnt want to go out etc and he didnt really help in any way.

 

my daughter was hoping to enrol on a childcare course at college, but they said she couldnt do it due to her aspergers and when she was on her other course, they would quiet often change things at the last minute and she would get upset, when i explained why this was happening they said "your daughter is using it as an excuse"

 

so now she has no college course, i dont get any family allowance for her since she is 19, she does get the low rate DLA for both parts, until 2012

 

my main concern is she just doesnt do anything, she will just sit there all day, i run around like an idiot getting housework done then go out to work and she just sits all day mainly drawing or on the computer playing games

she complains if i want ti listen to any music, she waffles on all the time and as she has been at home since april i am finding that it is getting me down, i leave for work early just to get a break from the situation. she isnt even going to her art thing anymore, she does have an intensive support worker and we are due another meeting with her psychatrist, but as she is 19 she is no longer under the child services (which is what he does) and they are trying to get her seen under the adult services

 

i just dont know where to turn for help, and worry desparately for her future, i have only told my sister and the college about her diagnosis as that is what both her and i want--- she also seems to have got alot worse since the diagnosis, both myself and my husband notice this

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Hi Karenann -

 

There seem to be two lines of thought regarding people 'going backwards' after diagnosis. The first is that the dx enables them to be themselves and removes some of the pressure they feel/have felt to conform to a norm that doesn't really fit them. The second is that the dx becomes an excuse for not doing things they don't want to do and a justification for doing only those things they do want to do. My own opinion is that in many instances it's more a mixture of both, and the degree to which one or other response might apply has far more to do with personal psychology and/or external factors like environment and support.

If she's only just been diagnosed then there will, quite naturally, be a process of adjustment, but having said that you say there was a long route to diagnosis and it was always acknowledged that she was 'different' anyway, so that adjustment wouldn't have come out of the blue or as a complete shock, iyswim.

Issues like bullying will have had a huge psychological impact - especially, IMO if that was 'in house' bullying from her extended family, so it is good that she is continuing her therapy with her support worker/psychiatrist.

 

Obviously, I can't hazard a guess about what happened with college, but it is certainly a possibility that your daughter was challenged by some aspects of the 'teaching' - like last minute changes etc - but that 'using it as an excuse' was also part of what was going on. Aspergers is certainly not a reason for (them or her) saying she can't do the course, but in practical terms it may be that the support they could offer wouldn't be enough to keep things on track. There are so many factors involved in something like that that you could only really answer the question by a process of 'holistic' assessment at a personal/local level.

 

With regard to the problems at home, I think you have to start looking at them very 'practically'. At the moment she is having absolutely no demands made on her whatsoever, and is 'volunteering' for nothing herself. That really isn't reasonable for any 19 year old, regardless of whether they have AS or not. While you are enabling her to live that way, however, and keeping her supplied with a roof over her head, electricity for the games console and telly and three squares a day there isn't really much incentive or pressure for her to change unless she reaches the conclusion it's not how she wants to live anymore (which from what you've described seems unlikely).

 

So, IMO, the place to start is to look backwards and establish what you think - and what she has previously demonstrated - she can do. Diagnosis won't have changed that at all - if she could do it before, she can still do it. Then establish what it is necessary for her to do - i.e. what she needs to do for herself for her own wellbeing and what it is unreasonable/unfair/taking the mickey for her to expect you to do (and it is certainly ureasonable for her to expect you to creep around downstairs not listening to music in case it 'upsets' her or to dread being in your own home so much that you see leaving for work early as a 'break'). Prioritise on a couple of things at a time, and start from there...

 

As far as her future goes, that really has to be down to her. If she choses to live like a recluse and is happy to remain in her room then - even while it is not what you would hope for her - it is a lifestyle choice. Alternatively, if she wants more than that, the impetus has to come from her. You can only support her in achieving it - you can't make it happen or achieve it for her.

 

None of that is going to be easy, and you will be on the receiving end of all sorts of emotional blackmail if your expectations of her aren't to her liking. That doesn't make her a 'nasty' person or anything like that - it is perfectly normal human behaviour for someone 'bucking' against authority and resorting to the most effective tools available to them.

 

Hope that's helpful, and very best with it.

 

L&P

 

BD

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Hikarenann and Welcome to the Forum. :)

 

I certainly think it is worth asking for a referal on to adult services.

It can be more difficult to obtain an appointment with adult services in mental health compared with CAMHS as there is frequently less provision.However it should be easier if your daughter was previously known to CAMHS and there should be arrangements in place for transition.

 

Even though your daughter has AS it is possible that she could also be feeling very down or depressed.This would impact her motivation.

My son who has AS is only 12.However there are many on the Forum who understand your situation and may have some useful ideas.

Karen.

Edited by Karen A

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thankyou for your help and kind words,

i am finding it all very difficult at moment and hadnt known where to turn to for help, as i say when i saw the GP he wasnt much help, i did think once they get a couple more doctors in at the surgery later this month, about popping back and seeing if there is anywhere they can guide me for help, as it feels like i am fighting in the dark

 

the money side of things worrys me too, all she gets is DLA lower rate for both parts, we get no more family allowance or tax credits, i did think about taking her down the job centre but i honestly dont think she wants a job, so we are supporting her, the DLA goes into her bank account.

 

what also hasnt helped is the place that helped her get diagonosed there is a lady that works there that has been most helpful, and is a counselor at connexions too, she keeps saying that my daughter cant do certain things because she has AS and she shouldnt be doing certain things but she was doing them before she was diagnosed ?

once example is getting the bus home from the art club, my daughter was doing it perfectly fine, i would send her brother down to meet her off the bus if it was dark but this woman is saying she shouldnt be doing it.

also i suggested that my daughter do once morning a week in a charity shop just for confidence etc, and this woman has again said that my daughter "couldnt cope"

the other problems i have is eating, she will only eat certain things and clothing as a 19 year old girl she should love shopping, but she refuses to go, or if i take her as soon as we go she wants to come home straight away, same with any visiting-- although we rarely see any of my husband's family, and if we are going to see any of them, because of the cruel comments they have made in the past she refuses to go, and i cnat say i blame her.

 

with her clothes she will only wear the same sort of clothing ie tracksuit type bottoms and t shirts i have tired getting her jeans etc but she wont wear them, another problem is because of her lack of motivation and excercise she has put on alot of weight, i suggested she does wii fit, or goes for a walk just round the block once a day for fresh air, but she just sits there either on the pc, or watching tv or drawing

it is very sad to see her like this, and as i say it gets me down, specially as i have to keep reminding about personal hygine, she will change her clothes okay, but it doesnt enter her head to wash brush her teeth etc, and i have to TELL HER to wash her hair, or that i think she may need a shower, and dont get me started with her managing her periods :angry:

Edited by karenann68

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Hi karenann.

 

.From your description it sounds like the counsellor is not very empowering. :wallbash::wallbash::wallbash:

I do not have a daughter but I do have a son who is 12 and has AS.

 

He does not travel alone yet but that is partly because our elder son who is 14 and over 6 foot has been the victim of an attempted mugging four times in the past eighteen months and the police have no idea what we can do about that. :rolleyes:

 

However Ben is at a mainstream school where he is doing very well in all respects.There are very few activities that he has not tried and he hopes to be a graphic designer and an author.The only thing Ben could not now do that his brother could is join the armed forces.

 

It may be helpful for you to read around some posts on ''Beyond Adolescence''.

There are many adults who have obtained an AS diagnosis as adults who work,have a family,drive and have lots of interests.

If your daughter was able to do things before the AS diagnosis there is no reason why she should not be able to do them now unless something else such as another medical condition has happened in between.

 

I am frustrated for you. :angry:

 

Some people with AS may need extra support to be involved in activities especially at first.

However voluntary work in a supportive environment or travel independently are exactly the sorts of things most people would suggest.

 

The situation says more about some people's views of disability than it does about your daughter.

Karen.

Edited by Karen A

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Bit pushed for time, but very quickly your connexions officer sounds like she's making things much, much worse.

 

My nephew is 21 and autistic. Not 'HF' Autistic or 'AS' but autistic, and MLD. He works in a job he loves 4 days a week, lives pretty much independently now, is a member of the local cycling club and has travelled independently on buses and trains since he was 16, starting with short 'hops' and now has a wanderpass.

 

Your connexions officer is enabling your daughter to be disabled - exactly the last thing you need this soon after diagnosis. Guessing, of course, but she probably oozes sympathy while completely lacking empathy or understanding. That's patronising and damaging.

 

Right - gotta run, but hope that's reassuring that the dx does not necessarily mean your daughter can't do these things.

 

L&P

 

BD

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I would completely agree with Karen and Baddad. If you daughter has been diagnosed with AS she has always been AS. Nothing changed in terms of who she was at the point of diagnosis; all that happened was that a way of understanding and describing those behaviours was applied. If nothing (i.e. no other medical conditions) has been additionally developed in the intervening time, then your daughter is perfectly capable of doing the same activities she could do before the diagnosis. If fact, I would go so far as to say she should be more capable of doing some things as the dx brings with it self understanding and understanding from others so that problems (and here I mean things that have always been an issue, not things that are assumed to be an issue because of the dx) can be recognised and addressed.

 

I do think you need to be quite firm on expectations. This might seem cruel, but it's going to be so much easier to address now than if things are allowed to continue to slide. She needs to take responsibility for personal hygiene - fine, if she needs say a checklist or a weekly planner, not a problem, but anything shouldn't impinge on other family members. At the moment it seems to me as an outsider that she has things pretty easy - she does what she wants and gets board, lodging and feeding for free. Unfortunately she's going to need to understand that this isn't the way the world operates.

 

Your idea of voluntary work sounds ideal. I would ignore the Connexions lady - you know your daughter and what she has been, and therefore is capable of. I'm a student but I do voluntary work once a week and I have to say it's been brilliant for me; it gives me a break from the rest of the week's routine, it means I have contacts with people I wouldn't normally have, and importantly it's work preparation. It may be difficult for your daughter initially - it's that hurdle of going from thinking (and fretting) about something to actually being there. The more involvement your daughter has at this stage and the more she feels in control, the better. She may need quite forceful pushing to get started, but I think she'll thank you after a while.

 

If she is not making a financial contribution to the household (would it be worth finding out about benefits? - I'm not an expert here but other people may know) then she needs to be making a contribution in other ways and this needs to be agreed and stuck to. Maybe initially you could work ways she could help into what she feels comfortable (well fairly comfortable - no one likes chores!) with - could she for instance order your groceries online to free up some of your time?

 

I would hold off perhaps on things like family visits if these carry all sorts of emotional issues - work on practical issues that can if necessary be broken down into steps with any emotional issues removed. It's not how would you feel about x, y and z, but today is Friday. You are doing x, y and z. If the computer is an issue, then is doesn't get turned on until x, y and z are done. Might seem harsh and difficult but in some ways you are going to have to go back over behavioural expectations that have been allowed to slip because of perceived and projected difficulties.

 

The expectations of those around her need to be enabling and supportive. This sounds easy but is in reality a really difficult balance to achieve. It is so important that everyone talks and ensures they are expecting the same; that she doesn't have an easy way out with any one individual. I have some fantastic support workers; it's taken ages to get the balance right and there will continue to be issues - I only recently had to tell one that she was in effect giving me excuses and that if I took them all on board I would never get anything done - but that's something I've had to come to realise for myself. It's too easy to be enabled to be disabled and not to realise the impact it is having on yourself. I think both you and your daughter have a lot of hard work ahead of you, but you seem to realise what's going on, though I understand that effecting change can be difficult.

 

Oh, and p.s. I hate clothes shopping too! I live in jeans and T-shirts/shirts. My sister bullies me into shopping occasionally (and it usually involves a triple chocolate muffin when the task is complete!). If she is at least respectable this doesn't need to be the first battle. She needs to be able to see that the changes benefit her or she may be less willing to change at all.

 

The other thing that occurred to me - the college course that said she couldn't do childcare because of AS? :shame: Find another college. That is complete nonsense and only says anything about their preconceptions. I had/have some problems with my university saying I can't do certain things because of my autism and other health issues. Unfortunately I'm a very stubborn individual and if I get it in my head that I am going to do something, you do not want to be the person standing in my way! :rolleyes::fight: Hopefully though, in the process, I've helped to re-educate some people. Something that really helps me is to make monthly, 6-monthly, yearly and 5-yearly plans - just ideas of what I'd like to achieve and then researching how I may go about them. I enjoy the researching and it gives me some stability and knowing that I have control over what's going to happen. If she enjoys working on the computer and drawing, perhaps she could put these skills to use in coming up with some plans?

 

That's all bit jumbled, but I hope there's something useful in it. :unsure:

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If she is not making a financial contribution to the household (would it be worth finding out about benefits? - I'm not an expert here but other people may know) then she needs to be making a contribution in other ways and this needs to be agreed and stuck to. Maybe initially you could work ways she could help into what she feels comfortable (well fairly comfortable - no one likes chores!) with - could she for instance order your groceries online to free up some of your time?

 

I would hold off perhaps on things like family visits if these carry all sorts of emotional issues - work on practical issues that can if necessary be broken down into steps with any emotional issues removed. It's not how would you feel about x, y and z, but today is Friday. You are doing x, y and z. If the computer is an issue, then is doesn't get turned on until x, y and z are done. Might seem harsh and difficult but in some ways you are going to have to go back over behavioural expectations that have been allowed to slip because of perceived and projected difficulties.

 

I think I need you Mumble.

Ages on the PC this morning then popped out but back on it now.Three hours to school run...

Washing to do.

The kitchen is a mess.

The living room needs a hoover.

...................but what about the chores I don't feel comfortable with.#

Can I do an internet shop please. :whistle::whistle::whistle::devil:

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I think I need you Mumble.

Ages on the PC this morning then popped out but back on it now.

Ah, I'm afraid it's a case of knowing the theory but not employing it myself. Do you not think I should have been doing something else whilst I was here this morning ... and now? :whistle:

 

The living room needs a hoover.

This I can help with. Came across the most awesome gadget when away and you can get them in the UK - they do actually work and though expensive the time and argument it would save may well be worth winning the lottery for so you can get one - iRobot. :thumbs:

 

Can I do an Internet shop please.

I think most people can do an Internet shop now, particularly in London. Most of the supermarkets cover all areas.

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my mum has prompt me with personal hygiene like you do with your daughter washing her hair having bath and brushing my teeth i automatically go on the attack as see it as critism notconstructive i take personally i know many list of skills we lack in and struggle with find difficult this sometimes slips if your daughter hasn't got routine /structure to her day why don't you set up planned routine with her get her out the house for abit like i go to the gym or for swim so i'm not stuck in house watching TV putting on weight ( not tiny anyways!) and also gym gives you self confidence/image and gives you challenge /purpose couldn't she volunteer working in nursery setting ring up local nurseries or write them letter and this give her valuable experience of what work place like environment work colleagues have you been in tuch with N.A.S at all for support ? i went college for three years two of them years i did child care and passed highest grade was hard going but determination and ambition beat in you strong to achieve and succeed even A.S won't STOP ME! was struggle ..... but i weren't guna let it beat me i wanted it bad to work with little kids my dream job i weren't going to let A.S take that away rob me of that chance

 

only if you let someone say you CAN'T and you THINK you CAN'T in your head she stopping herself talking herself out of life sounds like very scared afraid and lives in her comfort zone routines which many AS's stick too causes less anxiety and stress that easy option to let it win she got to prove to that connexions lady she is wrong what she said make her eat her words! that what i've done when people said same to me i won't have it! lack of confidence/esteem holding her back but in safety of onw home she secure proetcted she needs bringing out of that slowly not rushed so introduced to world outside the house or just become worse and worse deeper and deeper .....

 

break down into small steps has she got social anxiety ....??? has depression been looked into this can give lack motivation etc? i know isn't easy steps to take to come out house as make panic so does doing something out 'normal planned routine' but got to be comprise somewhere as affecting everyone's lives can't carry on forever like that .....

 

i found connexions out for themselves alot of time too busy to care to worry stress so just say anything to be honest to make their jobs easier free up some there time etc it madness they want you to do their job for them end of and that wrong!

 

good luck

XKLX

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volunteering has lead to me being offered bank work part time so go in where called in and needed by boss do 4-6 pm most afternoons and gym and swim during the day keep me busy! out of trouble! my parents feet! lol exercise also lift her mood make her feel good about herself .... give her targets/goals to reach i think volunteering good way of learning what is expected of you practice run but may suddenly turn into real paid wage job like me and meet new friends colleagues expands your A.S world and learn new skills .... social interaction comminication opens up more etc be good tool... i'd get your daughter write list of addresses telephone numbers etc of local nurseries/pre schools keep persisting as someone going to need extra pair of hands for free these days! good opportunities may lead to future courses training while working .... you never know i ready give up volunteering position and my parents said keep at it now look endless out there just got to out and look as people said to me jobs won't find you you have find them go out chase knock anything to get known and recognised hard working reliable willing to learn and try my work learn't about A.S since i worked there so i feel like i personally gave knowledge back to them too works two ways not one way life is frustrating tiring does want make give up first hurdle ... so much this could do for your daughter get her pride back that been taken away or missing .... may learn about herself and others .....

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