Advice on sister

[Dragonfly]

My sister has sever autism. Aspergers spectrum disorder. She cant speak right and has a lot of issues. She is 15 and seems to be getting so much more worse. This includes a lot of voilence to my parents and mostly to herself.
My parents dont tell me anymore what she is at as they know I will try and intervene as they dont seem to get her help.

They have been listening to hvs,social works and all these poeple for years telling them to ignore her behavior which was always distructive. If you stand up to her expect a black eye now and windows to come through! She has been self harming herself for years now, just randomly punches herself. She used to be covered in bruises , she still is but worse now!
she randomly walks post my mum and smacks her across the back of the head. She punches herself in the face for no reason. She has put through the bathroom window in temper and will not do as she is told. Everything is on her terms. Even visits to my son are limited as she stands there waiting for my parents to leave again and demands they go when she says so.

Always has got her way and been spoiled but this worries me. I tried to talk to mum about it and she accuses me of ridiculing her and dad says he dosntw ant to get into it and that its ok for her to do this as thats how she is. Thats what these coucilors and socials workers still say. No one seems to have help for her at all? I worry she will do fatel damage as she is such an angry teen! she cant say her name at all her speech is so bad and carries teddys about still. She also has taken to peeing in the middle of her bedroom floor and spits for no reason. I thikn thats like a tourettes thing.

who can help with this? any surgestions, I want to give my parents somwhere. They have mentioned care before but they wont do that. My sis will listen to me and others just not parents. She knows how to wind them up.

 

[sam's mum]

Have you tried contacting one of these branches for advice? National Autistic Society - Northern Ireland They might be able to suggest a specialist that your sister could see, or a support group to help her with ways to deal with her frustration etc. that don't involve violence x

 

[Dragonfly]

They are members of that. These are all the same people that say thats just the way she is and to let her do it. I cant understand why they say this, I seen a social worker say that infront of me when she was smashing up a livingroom !

but its the self harm and hitting poeple that worries me, is there anywhere for self harm? I also think she is skitzo as she does curse to herself and hit herself as if someone in her head is talking.

 

[sam's mum]

Might be worth going back to her doctor for a diagnosis because like you say she could be displaying symptoms of something other than aspergers which have been overlooked because she's been referred for that.

Don't know if these people would be any use, or at least be able to suggest someone else you might be able to contact?

https://www.parentsadvicecentre.org/

 

[Dragonfly]

I think its up to my parents, they dont listen to me as I have found out over the years when I told them to do something about the self harm, but years later its still not being helped and they are ignoring it. I dread the day when parents go i will have her as my brother couldnt look after a gold fish and i will have all the grief. I have worked with special needs kids,teens and adults and never seen anyone this bad and I seen people stab themselves and lash out. This can be prevented but my parents just dont seem to want to anymore. IOts like the life is drained out of them they let her win. I know its hard but they cant see whats best in the long term for her and them. I have beebn told to keep out anyway. They dont take much to do wioth me since I had my son as they tried to interfere with what i thought was best for him and are not doing things their way like feed him junk food at this early age. My sister gets 5 choc bars a day and she is allergic to chocolate, also allergic to wheat and caffine and has all of them things a day.
My other half has said he wont even let them have william but they have never offered anyway.
what can i do, i can send them links and they can ignore them. I try and talk about it i get told to mind my own, i see it happening with my own eyes and when i go to open my mouth about it i get toild thats acceptable behavior because of her autism.

I feel delated now about the whole thing. I dont think my parnets want anything to do with me to be honest.

 

[lozzy21]

If she will listen to others but not your parents tbh it sounds more like she is doing it because she can. violance and agression with people on the spectrum are usualy because of fustration because they are not being understood and cant get there need across. People with autism need consistand boundrys so they know what is going on and so the world makes sence.

They dont see or hear like us. We might be watching music tv, and its no loud and there is nothing wrong with the picture but for some one with autism it could be as loud as a jumbo jet going off right next to us and the colours could be so bright they hurt there eyes. There brain cannot process the information and they start to go into something called fragmentation. Aparently this is the most painfull thing in the world. Its been described as an intense pain and pressure in the head of back of the neck. People with autism may hit there head or the back of the neck to try and make it go away and stroking there head with a bit of pressuse as well as taking them away from the cause of the pain can help. The world is like a colidoscope of colours and its verry confusing, they will do things to help process it, like finger clicking, flappin there arms, tapping, other repative behaviour and self harm. Its like if i do this i know where i am.

People with autism need routeen and repercussions. They need to know if i do this, this happens. They need to know what is going to happen next. If this dose not happen they get i dunno scared is the best way, they dont know what to do to make it beter so they need some one else to do it. Because of there communication issues they cannot say this so can become violent and agressive.

Carrying a teddy about is not realy an issue. Its familiar, its cosy. It will also have different textures which she will like the feel of.

She may never talk proppely, that just may be her learning disability. But some studdies have shown that once if they feel as safe and secure as they can. They have boundrys and a cause and effect lifestyle some people will start more.

It may be harsh but it sounds like she may be better living some where were she will get the things she needs, routeen, boundrys, the apropriate soroundings and people who will be able to help her make her needs known better and can understand her condition better.

People with autism are not like the rest of us. Problems occur when we try and make them behave and live in the normal world, instead of understanding what they need and changing our world to be more autism friendly.

Sorry about the essay.

 

[Dragonfly]

I get what you mean she is 15 and its only since I moved out years ago after coming back she is a hooligan now. She was spotted once ripping someones pillers down in their drive way by a friend who approached her and stopped her.

she has someone call to her to see how she is from these helps, my parents do have things for her only i dont get why they all say we just have to except she does harm to herself. there is no bounderies for her at alol she can push and push and once she pushes hard enough to warrent a shouting from my mum then she goes ballistic and wreaks the place! goes on for ages the banging and slamming and punching. I know my mum is good at ignoring everyone so i assume my mum was ignoring her and theonly way tyo get attention was to get shouted at.

My aunt had her for a day before and said she was an angel, she is an angel at school its soon as she crosses that front door she turns, door slams and she is a monster demanding everything and getting it. There was no disiplin ever for her as they where told not to, just leave her like that she wouldnt listen anyway. I dont agree with any of the advice and now we are dealing with more serious issues that seem to be ignored.

She has her routine if its broken god forbid! but the routine involes commanding my parents on where they go, how long etc. She is used to getting her 6 choc bars a day, when she gets in from school there is 3 and when she goes out after dinner with dad there is more or dad has to get her some.

I am just worrked that she will do herself some seriious harm and is not getting the proper help she needs. My parents never seem to see it as a prob as they are told this is normal and to ignore it all.

 

[lozzy21]

Its only normal because she sounds spoilt. Half these social workers have learnt what they know from a book. They have never had to deal with the behaviour.

I work at a place for adults with learning disabilitys with challing behaviour. Its a pilot scheam to see if people with severe behaviours can live in the community. Its the first of its kind in the north east, all the tennats have been in institutions for most of there life.

 

[Dragonfly]

sounds interesting. My parrents only listen to social workers, and these ones I have challanged to. I made her a star chart 4 years ago, this was so that she brushed her teeth, cleaned her room and wore cloths (she used to walk about with no knickers on just a top and no one would say anything to her)
I had moved back in as i lost my flat due to job lose etc it worked well, she had a goal to do. got her 5 gold stars and a special one for completeing it and she she didnt she didnt get her speical star if she got 4 etc. She was perfect then. I told social worker who complently laughed at me for doing that and told parents there was no point!

then parents moved and i stayed in old house and never done the chart and now she is worse. They just wont entertain it at all. They have no time for it.

she has everything! sterios at £600 which i wanted when dad was finished it was about 26 years old anyway. PS2, own sky system to watch what she likes and a room full of junk and mold from the food she just stores up there. My dad had to pay poeple to clean that as no one can do it anymore. She hordes things from the bin to. She is turning ferril. She was once a lovely girl that smiled and knew how to have fun. Now she is moody grumpy and abusive. Its slowly crept in this. Maybe its teen hormones or something.

she had allerggy tests done as i notcied she was having prob with the loo as i would hear her getting up 6 times a niht and straining. Then would have a sore belly and her skin looked bad. Parents paid for test private. It came up she was allergic to wheat (like me) chcolate and caffien. I do believe her diet effects her behavior as she goes mad after choc! I have an intolerance to wheat she has the coalics disease and my parenst tried her for 1 week without wheat and she was so much more calmer! then they gave in and she was a nightmare again.

if she didnt have her dinner on the time she wated, and percisley she would bin it infront of you. She wouldnt let my parents come and see william as she was jealous! she lingers around the door in my house waitying for parents then says "!where leaving now" and they jump. I was shcoked to see how much she had a hold on them in the past few years.

what happens if its just left like that and nothing changes? will she do herself serious harm. will the stress cause my dad to have a stroke as he has high BP and diabtes as it is,.
i always found bargining worked when i worked with special needs, i got oin with all of them. Staff got jealous i was able to get them to do stuff that they where not. there is a way of doing it only my parents dont think i am qualified to speak about this.

maybe she is better off in a home. She does go to respite where she is an absolute angle aswell.

 

[lozzy21]

Hormoans will have a part to play.

If your parents arent going to listen, there is not much you can do. But is will come back and bite them in the arse as she gets older.

I think things would be stoped if she was realy injuring herself. Im sure school and respite are keeping an eye on it. Dose she have a support worker? They should liase with her social worker and relay and concerns.

 

[Dragonfly]

she has all them poeple, i am beginnig to think my parents are saying its not a prob to them since nothing is happening.

she is fine in care and in school just not at home. She is like a tornado, i can even hear her going mental when i am on the phone to dad bossing orders and bashing things. She is capable of good bahavior but only for certain poeple and thats everyone except parents.

There isnt anything i can do i realise that now. I am not even going to bring it up again as it starts a row and i get told where to go. I tried several times over the years to help and its come to this.

and they are paying for it all now, it will just get worse only they cant see they can make it easier all round they just let it go on like that.

I really do appreciate your help, its helped me get it out of me as i am so angry at them right now. I have been for years just for dismissing everything and ignoring it all. I live in that house we all used to live in as i took over the rent and its wreaked. I have wholes in the fireplace i have to repair which will cost a fortune and holes in the wall which we had to fill in. We had to decrate most the house we could afford as it was covered in food, she throws her dinner at walls and anything she has. Was really minging her room. We had to lift carpet and do the walls again. She has had two floors down in parents house and their house is 3 years old. Wooden ones! she was moved to another room as she had to much mess and now she is just pissing in the middle of the floor.

I dont get why she is pissing when the bathroom is a few feet from her bedroom?

 

[lozzy21]

Because by the sounds of it shes not being told that its not acceptable to pee on the floor and shes not being told off when she dose do it.

 

[Dragonfly]

my brother didnt let her get away with it thats for sure. She was in tears when he started on her and apoligised but my parents said nothing to her. Thats when they mentioned care homes.

 

[oldermummy]

Hi Dragonfly, what an awful situation some of which I can relate to.
Can I first ask if she has a definate Aspergers diagnosis? It is just that you say her speech isn't very good and one of the main criteria for a diagnosis of Aspergers is very advanced speech from a young age.
My step son has aspergers and we had lots of problems with violence from him which resulted in him being taken into care too maintain the safety of myself and my 2 kids.
I am not having a go at social workers but they have NO place in giving advice on how to handle a child with complex special needs. Your sister should be seeing an educational psycologist, speech therapist a child psycologist and maybe even an occupational therapist, this is what in general a child with autism would have as a multi-agency team to help the child, the parents and also the school.
It does sound like your parents have bought into her behaviour being unavoidable, but that is not the case, the vast majority of what you have said with regard to her behaviour could have been nipped in the bud by your parents had they been given the correct help from early on.
Have you thought about going and seeing her gp yourself, they obviously won't divulge any info about her to you but I suspect that your parents haven't told the gp about all of the problems they are having with your sister.
At the end of the day, your parents are the victims of domestic violence, this may seem like a strange thing for me to say but it was what I was told by the police when we had problems with my step son.
As you say, your parents need help and soon.
I can understand how frustrated you must be with them letting this get to this stage, have they thought about who will look after your sister when they aren't around anymore...
I really hope that you manage to sort something out to help, your sister can't really be happy with her situation either.
This is a link to a forum I am on (my 2 yr old is being assessed for autism) I have found it really very helpful and supportive.
https://www.asd-forum.org.uk
Good luck

 

[Dragonfly]

Thanks oldmummy. They have told me to keep my nose out of it and are currantly not speaking to me. Not speaking to me as I can hardly get a word out of my dad on the phone anymore and things have went pear shaped. I think its either whats going on down there or they dont like me. They seem to have no time for me or my son at all and will sat that to me. Sis has them run off their feet. She has a speech therpist but no child psychologist, this is what I have been telling my parenst to get for years but it hasnt been done yet. You cant say a bad word about my sister near my mum or she would eat you alive. Anyone can say what they like about me she would join in but not my sister. Not even I am allowed to say she is badly behaved, I am accused of picking on her autism if I say she isnt an angel! Maybe my mum likes being slapped by her as i am shocked she takes it, if I had of done that i would have been flattened by her! my mum even slapped the shite out of me when I was a teen for being rude to her once. Now she just lets my sis slap her and does nothing. When asking why dosnt she tell her off I got the answer " what good would that do its her autism". So they think there is no point on disaplin , she is allowed to be this way.

its sad as I have no say. And I will be left witrh her and my lay about dole brother to who at 31 cant feed himself or pay for anything. He dosnt get hassel either for doing notihng but giving my mum abuse. Perhaps pushing me out of the house at 17 was good for me as I didnt get anything them two get down there now. I just get told no one has any time for me and treated like I always want stuff when I dont all I wanted was for them to look at their grandchilds pics I pay for them.

oh well. sod them now, probbaly will call up next week and pick on the interior of my hosue while my sister lingers weirdly by the door getting jealous of my mum lookiong at my son while the air is so tence you could cut it like a knife. Lucky them visits last 5 minutes.

 

[Cocobelle]

Hi, I am sorry I am so late to this post but I have only just seen it and just had to reply to try and offer some help as I went through this (and worse) with my son two years ago so I know exactly what your parents are going through.

It was the worse time of my life and I just could not understand how my sweet natured little lad could turn into this unhappy, angry and violent teenager and once the school decided they could no longer cope, it got a whole lot worse as we could not find anyone who could cope with him and he was at home, smashing everything (even our light bulbs) if he could not get his own way. Our son was not over spoilt, we tried very hard to set boundaries but it made no difference.

Once he was at home all day he was obviously bored silly but he seemed to hate going out and in the car if he sat in the back seat he would pull my hair, yank on my car seat or punch the windows, if he was in the front seat he would pull at my gear stick or hand break. He was never violent to us on purpose but sometimes when he was in a rage he would throw big heavy things or do stuff that could have caused serious harm if you were in the way. Luckily he never self harmed either.

I love my son so much and it was obvious that something was making him this unhappy for his behaviour to be this way (my son is totally non verbal) and as his mum, it was my job to find out what and to sort it even if it meant doing something that was against every thing I had ever wanted and for us, it was finding a school that could bring out the best in our son as love alone was obviously not enough any more.

What Lozzy says is so true, as a parent there is only so much you can do before you are worn down and too tired to keep it up, plus you have other things that need your attention such as work, household chores and just life in general. A dedicated school or college over comes that by having people on hand who's sole purpose is to care, educated and provide much needed structure and boundaries to the child/young person with Autism.

Making the decision to send our son away to school was the single most difficult thing I have ever had to do in my life, it almost broke me and even now two years on, I am sitting here crying thinking of that time but I can honestly say it was the best thing we ever did. My son has come on in leaps and bounds, he is now 19 and living in a house with 6 other youngsters of similar disabilities. He loves it, the staff are brilliant and the house is lovely. In fact I have to hurry this along as I am off to spend the day there with him doing a bit of baking, maybe go for a long walk in the countryside around the house.

I know why your parents are hiding their heads in the sand. I know you as a sibling care and worry but it is not the same as the way a parent does (you would be the same). My mum and my sister were there for me and I know the whole situation upset them, but at the end of the day, only I knew what it was like to be my sons mum.

I would seriously think about writing your parents a letter. Take your time and write in everything you have ever wanted to tell them, They can';t tell you to shut up if you are not there!

For me, as my son is an only child, I was always worried about the time when we would no longer be there to look after him and I would never expect a family member to be sole carer (although if we had another child I would like to think they would manage his affairs, fight to make sure his level of care is still high and of course visit him and have a relationship with him) but ultimately I need to lie on my deathbed knowing my son is happy, loved and safe somewhere he is happy and I know he would be none of those things if all of a sudden he was thrust into the care system suddenly without me to make sure he was in the best place. Your parents really do need to consider the future. Even if they start small like respite care will give them a much needed break and also start to encourage a bit of Independence away from the home. Sometimes we have to do things that are for the child's best interests rather than our own, and helping a young person to grow and develop a life away from the family home is one of those times.

Sorry to have waffled on, but I hate to think a family is going through what we did as there is nothing more heartbreaking in the world than realising you are not the best option for caring for your child.

If your mum ever wants to speak/email someone who totally understands, one mum to another who has been there, just let me know.

Must dash, I have a handsome young man to visit!

 

[Dragonfly]

Well I had a row the other day with my mum again about it.

My brother came out covered in marks, she lashed out at him passing becasue she didnt get the right colour of nintendo ds. God know what she got a ds for she just gets stuff handed to her so she dosnt last outr but if its the wrong colour god love everyone. My mum got battered and so did my brother. I seen the marks on him and he got off lightly apparently.

So my mum tries to tell me not to let william rule the roost because he is playing in a cupboard, the only one he is allowed in. And I crack,. how dare she when she lets my sis rule everything they do! so I said it again is she getting her help and i got the same answers as usual, !"its her condition and the way she is" and I got told i was inculting her special needs by mentioning anything about her.

I cant say a word against her without being insulting about her apparently. She was never disaplined, they ignored this and where told to ignore it and now its gone to the point where she is abusive and still gets away with it,. waiting for her to put her next window through and get away with it becasue of her "condition" .

she dosnt do this anywhere else! dosnt do it to me, certainly not in my hosue. She is quiet here, stands at the door waiting to go and even when i tell her to sit down as no one else will she dosnt better me like she does my mum. If i had of laid a finger on my mum when i was young i would have got it back and in so much trouble! if i had of cursed at her she went ballistic! she dosnt anymore. Even i tested it by being cheekly to her and she takes it. She is a pushover now.
I worry about both of my parents as dad has high bp and on meds and my sis has his him around her finger. she would get dressed and shout at my dad "move move move" out to the car and down town to buy her swweets and if he dosnt another battering matcch, slammng doors and cursing. I can hear her should F*ck off in the back ground just because my mum is talking to me and if my mum dosnt listen she is in the kitchen smashing it up in a rage! its way overboard. You can hear her shouting at herself in her room, its like she has remembered something and then argues in her head about it. The walls are covred in food and my parents are out a fortune on decorating. She badly damaged a new wooden floor in their new house and it was down a year. And the house is 2 years old and the fllor has bene replaced 3 times in her room, and they are out looking for new carpet for the stairs yesterday. She spits to randomly anywhere, so there is spit marks.

i live in the house my parents used to so it cost me a lot of money to do it up from the mess she mad, her room which is williams play room now had to get a new floor and paint. Shcoked she hasnt punched doors in yet. She punches herself in the head continuiosuly which makes me worry she will hit herself to hard, you cant take that many blows to the head and be ok, She dosnt know her own strentgth and my brother said she is so string and i well believe it having recieved a punch ion the mouth a few years ago, to whiuch my mother hugged her and toild me to go away (am i shocked she is worse after that, no).

she has always been mums pet and always will be, dare anyone say a bad word about her or say she needs help. For they will be insulting her condition.

There is nothing i can do, i sent my mum a text that she needs to get her help or i would seek help except i dont know what to do as i am not the parents and they wont listen to me as my mum is telling them it isnt that bad she just lashes out nicely or something.

I can see my dad having a heart attack or something over this or even my mum as she has to much weight on her to breath right. They say she isnt ruling the house. She is if she dosnt like what she is cooked she actually throws it in the bin and takes a tantrum till she gets what she wants.

William dosnt even know who my mum and dad are he has seen them only for a few mins at a time every fortnight maybe and most the times my dad comes in leaves someting and my mum dosnt get outof the car as my sister is there.

from now i have said since there is nothing i can do but argue with them and i am fed up with that, they have no say in what happens with william.

 

[louii]

I am really sorry for your troubles.

You have done everything you can do, you have given your parents suggestions on what to do and how to improve their situation.

They are obviously saying there are no issues to social workers etc when asked.

Is there a community Learning disability team involved, or a psychology team, not just social workers who sound incompetant frankly.

I have had a similar situation with my in-laws, they bury there heads and put up with violence etc, lie about what is really going on instead of getting the help and support they need.

You have to step back now and accept that you have done what you can, preserve your own family life and protect your son from it, sorry if i sound harsh but they have made their bed.

We do not discuss issues now with in-laws, have told them unless they do something about it we don't want to hear anything, we have gave them contact numbers, step by step instructions on what to do but to no avail.

Sometimes there is just nothing more you can do.

 

[Dragonfly]

Dosnt matter now they arnt speaking to me or had contact since the last row and it was about me not christening my son. They dont ask about my son or care, I have send them emails of pics of william and all I get is a thanks, one of the email called me insulting towards their religion. None my family speak to me now over this. I have actually had less stress now because there is no more constant rowing. I know this is different frmo any other row as they usually call up a day or two later and forget about it, this is weeks now. Not a call or anything. Shame William wont know who they are as they called little as it was anyway and they live 2 mile from me where as Darrens relations live further and do come here.

My aunt was here though, dont think she knows about the row but I said i hadnt heard from them and she automatically blamed me for not just taking mums advice. Everythnog is always blamed on me and i am sick of being at fault all the time. Then she got into a row with whyt am i not Rationing my son chocolate and junk food.

So I am sick of people arguiing with me in my family with what I do, I try to do best for my son, raise him healthy and religion free till he chooses but its not good enough. I am doing wrong according to them. No none of them want to know me.

good bloody riddens. Pack of nut cases,. I dread xmas now, I am being challanged why i am not visiting far off relatives when I have loads coiming here and no car and they have a car and live in the same time. Again its all my fault and my invite was ignored.,

how pathetic this all is and it isnt even about my sister anymore.