Hi, Im a newbie!

[Aspiemumto1]

Hi everyone. Its reassuring to read some of the posts on here. It means that you are not quite so alone in what sometimes can be a daily struggle. I am mum to a 16 and 13 year old. I dont have a partner. My 16 year old has possible Aspergers (we are waiting for further assessments and diagnosis).

 

I have known for years there was a problem and put it down to dyslexia. No one would listen to me that there was a problem and I was told she was lacking in self confidence and self esteem. We finally got a full dyslexia test earlier this year. She has dyslexia as apart of a wider learning disability. We have been to CAMHS 3 times and on the 3rd occasion Asperger's was suggested. It certainly explains a lot of things as she was growing up.

 

Currently our difficulties lie in the areas of self harming, suicidal thoughts, angry outbursts and depression. I think the hardest thing to deal with has been the self harming. She doesnt want to be in school anymore but is currently doing her GCSE's. She has always achieved quite well at school and I think this has masked the difficulties she has faced. As she was getting the grades they werent interested that she had give 150% to get there. She is now on antidepressants.

 

I have found it really hard to get any support for us as a family and have felt very isolated. Just wondered if there is anyone else out there going through similar things or if anyone else has any tips/useful info.

[darkshine]

Hello

 

Currently our difficulties lie in the areas of self harming, suicidal thoughts, angry outbursts and depression. I think the hardest thing to deal with has been the self harming. She doesnt want to be in school anymore but is currently doing her GCSE's. She has always achieved quite well at school and I think this has masked the difficulties she has faced. As she was getting the grades they werent interested that she had give 150% to get there. She is now on antidepressants.

 

I had those difficulties at that age - self harm, angry outbursts, suicidal thoughts and depression - I still have those difficulties now... I am 31 and was diagnosed with aspergers just over a year ago. It has helped me to understand some things about myself.

 

I think it would have helped if people had noticed that I was in that state when I was 16 (and onwards!) and if I'd have been diagnosed much earlier than 30 years old.

 

In my opinion, I think you should get the diagnosis checked out - if it is aspergers (AS) then you both have something concrete to deal with.

 

If it isn't AS then you can rule it out and continue the search for answers.

 

If you want to know more of my experiences I don't mind sharing - but for now I'll leave it at that cuz other people might have stuff to say and I really am up unusually early today I still normally wouldn't be up for another hour!!! It can sometimes take a day or 2 for answers to come through depending on how busy people are so don't worry if you don't get more replies real quick. Conversely you might end up with 30 answers by the end of the day if its busy and people get talking - its just like that on here - its teaching me some value of patience (which I'm not good at)

 

Best

 

Darkshine

[vikstar]

Hi im new here to . like you i have a daughter who has been diagnosed with aspergers and am alos going through the outbursts aggression .suicidal thoughts as well and am feeling a bit bewilded by it all at the mo especially the aggression towards me . hopefully we can offer support to one another xx

[Aspiemumto1]

Hello Darkshine and Vikstar, thanks for replying.

 

Vikstar, I too have felt very isolated and alone in this. Ive cried for what feels like weeks but had a bit of a turning point last week when I just thought enough of crying and talking about it, need to get on with it. Didnt help some of the comments I got from my friends like, " are you sure she isnt attention seeking, there's no way she is depressed and that I was reading too much into it all"! It would be great if we could support each other in some way.

 

Darkshine, you have been living with this for a long time havent you. We are just starting our journey. Although I have known there were problems since my daughter was small I thought it was dyslexia, ASD or AS never entered my head. I certainly knew about it as I have worked in a paediatric department at the hospital but it just never occurred to me.

 

I am gathering as much information or tips as I can, and if you want to share anything with me I would be more than happy to listen. Its all a learning curve for me. I guess I am just beginning to understand why she is self harming etc, because of the frustration that has been building up for many years, and not because I am a failure as a mother. She is waiting for a neuro=developmental check with CAMHS but I dont know how long we have to wait for that, could be months apparently. Her sleep pattern is pants too as is her diet and appetite lol.

 

I am also slowing learning that I have to explain things in simpler terms although it helps that she tells me when she doesnt understand something.

 

Are any siblings involved with both of you. My daughter is very aggressive to her 13 year old brother and any tips on how to cope with this would be helpful. I just need to know anything and everything that might be useful. I could ramble on forever.

 

Hopefully speak to you both soon.

[Tanya52]

Hi Aspiemumto1,

 

Welcome aboard. Nice to meet you :) .

[Beebee]

Hi and welcome...!!!

Bee

[darkshine]

Darkshine, you have been living with this for a long time havent you. We are just starting our journey. Although I have known there were problems since my daughter was small I thought it was dyslexia, ASD or AS never entered my head. I certainly knew about it as I have worked in a paediatric department at the hospital but it just never occurred to me.

 

I am gathering as much information or tips as I can, and if you want to share anything with me I would be more than happy to listen. Its all a learning curve for me. I guess I am just beginning to understand why she is self harming etc, because of the frustration that has been building up for many years, and not because I am a failure as a mother. She is waiting for a neuro=developmental check with CAMHS but I dont know how long we have to wait for that, could be months apparently. Her sleep pattern is pants too as is her diet and appetite lol.

 

I am also slowing learning that I have to explain things in simpler terms although it helps that she tells me when she doesnt understand something.

 

Are any siblings involved with both of you. My daughter is very aggressive to her 13 year old brother and any tips on how to cope with this would be helpful. I just need to know anything and everything that might be useful. I could ramble on forever.

 

Hopefully speak to you both soon.

 

Ok, here's a patchy history that may or may not provide some sort of insight into the thought processes and how things can slide downwards - in the hope that this can help somehow even if its just in terms of understanding the 4 issues you say you are having.

 

I'm gonna talk generally rather than AS specific (because your daughter isn't diagnosed at the moment and at that age neither was I).

 

My depression started to be noticeable at 14, I didn't fit in at school, was criticised for not listening or paying attention, for not working enough, for failing to do homework, and the pupils were just... I don't know, we lived in different worlds and whenever our worlds did mix it was for them to bully me or tease me. I felt so alone.

 

By the time I got to 15 and the GCSE years I was unravelling in so many ways but I only see that looking back - the year of being 15 was the platform for what happened next. Also for some really stupid reason I had convinced myself that I would die at 18 - this belief enabled me to believe that the hell would end.

 

At 16 (and onwards) I started cutting myself, it was after a really bad day at school, I just hated being there, hated being home, hated so many things. My family wouldn't listen or even try to understand me. There were other family pressures. I had this critical voice in my head all the time and one day I just picked up a knife. I didn't do much harm, one cut and I scared myself. But the next time I felt that angry I picked up that knife again - it would be a habit that would last for a decade.

 

Its provides a release you see - and a punishment - it gives some sort of control and power back - its satisfying...

 

I used to get so angry I'd trash my room, I'd destroy things I loved, then I'd have to hide it from my parents. If I ever got angry near my parents they would either ignore me, or they'd call me names, or I'd get a slap... I'm only including this info to explain that because they wouldn't listen - I kept it all to myself and things got so much worse...

 

I'd get home from school every day and just freak out - sometimes I'd scream abuse at myself (nobody was ever home til 6 or 7) I'd sit in the dark and I'd rerun all the bad stuff that happened in the day and I'd think over and over about all the mistakes I'd made - everything felt unfair and cruel.

 

I used to stop eating on and off. The sad thing about all this is nobody noticed. If I was home I was in my room - I had 3 bolts and a proper door lock on my bedroom door, my room was a total mess and I didn't care - even though I prefer things to be ordered I just didn't care. I used to believe I could die and nobody would notice.

 

I stayed on at 6th form as I had no better ideas and felt scared to leave the school environment even though I had negative experiences there. And things spiralled from there.

 

I hated myself so much, felt completely misunderstood and I did not have the ability to tell anyone - I didn't have the words - I didn't know how to have that conversation. I couldn't do what I can do now - I couldn't write about it or articulate stuff into a more understandable format (I still struggle with prioritising thought and picking out only relevant points so sometimes its like I ramble on and on trying to get things across because I'm not sure that I am getting things across).

 

I'm not going to continue past 17 because it all got unbelievably worse - I obviously didn't magically drop dead (stupid childish thought) - the short of it is at 18 I ran away and I never went back. I later rebuilt the relationship with my family and parents. I still struggle with depression, anger, thoughts of self-harm, and suicidal thoughts. But I manage it significantly better.

 

I have very little sense of self-worth - barely any sense of achievement, I still don't think I deserve to exist, I feel wrong, I feel like I'm nothing, I don't really like myself, and if the critical voice comes into my head it says much worse than those things.

 

I guess I am slowly learning to live with myself. But it all requires a more balanced view of things and better mental health (healthier, more realistic views).

 

............................

 

 

I've said all this to explain how things got bad - how my thinking was distorted - to show how the pressure all mounted until I cracked - its only a few snapshots, barely the tip of the iceberg - my attempt at a general picture.

 

So... maybe an important question would be what could have prevented all that...

 

I guess first of all you need to find out what your daughter feels like and why. Some possible questions to ask:

 

What things make her depressed?

If she's at school - Is it school stuff generally or specific events that occur that makes things hard or bad?

Are there issues with image or sense of self?

Does not fitting in make her feel faulty or wrong in some way?

Are there things in the family that are making things worse? (this one is an awkward one as nobody wants to hear that their own family is having a negative impact) I would recommend removing guilt on this topic and treating any comments clinically and logically.

Why does she lash out at her brother? What makes her do it?

 

These are just general questions - there's loads of others that these could generate - but the more info you get out of her, the more you'll understand and more importantly this could help you to help her - such as finding stuff out and seeking help etc.

 

I don't know if any of this helps...

[smileyK]

sorry it like an essay it goes on abit! .... just explain .. what type of self harm does daughter do? cutting burning ODing??? .

 

i can so relate to your teen daughter i was early teens when dark low crashing moods now i known as depression struggled to pretend 'everything was o.k' running just fine trying paint smile on my face all time in the end crushed me even more

 

i went to G.P over this not being able to leave house now know it social anxiety but at time described as 'agorphobic symptoms' and was just not myself tearful sad and when asked questions from parents about why this was what made me feel this way i couldn't explain give them 'right correct' answers they wanted to hear was so hard difficult try put into words/explain became more confusing felt SO VERY ALONE SCARED helpless useless failure let down list when on and on really!

 

i also went G.P over self-harm too felt it 'helped' made me feel 'calm' 'relaxed' when unhappy but also made me feel 'high buzz' from doing the cutting made me feel 'magically better inside' alright again happy ... was weird strange felt relief from it my parents struggled to get their heads around this situation i put them in andfelt very ashamed guilty over it that why kept it hidden secret only when it got uncovered i got found out discovered i felt worse .... terror of embarrassed of why resulted to such ... try explain why did it to make me feel 'better' was hard going felt like going round in endless circles getting lost not understanding real reason

 

i was hiding my cuts under school sweatshirts i was self harming ( cutting) before i went school in morning to get through the day dreaded facing it that much! i hide scissors,knives anything sharp ( glass) under my pillow SENCO at senior school confonted me about it after mum rang school concerned/worried after what she'd discovered hidden under my pillow and excuses i made for cuts on my arms all suddenly became clear added up made sense ....

 

from G.P i was referred to general counsellor where she spotted some clues from my eye contact etc something wasn't right adding up fully correct was referred to another specialist team who could help discover some hidden truths some answers from there was assessed / diagnosed really there and then two ladies who asked me and my mum background questions (education ,medical ,behaviour etc) knew straight away it was A.S we dealing with just didn't know a name for all these years with this condition

 

being officially diagnosed in eary teen years (14) was such shock to system really go through so many different emotions happy frist one normally then sad /depressed then anger /bitterness /resentment maybe but puberty added to my situation made xomplex explosion worse i was angry hurt confused mess stuck didn't know where to go what to do where i fitted in belonged who i was ... so many questions again! again confusing again felt alone isolated all jumbled takes time to work through and unjumble need emotional reassurance/support which i had

 

i think i was depressed in my childhood just didn't see it obviously like the rest! i became violent/aggressive towards my parents had to be physically restrained to floor police called was physically abusive held kitchen knife mums throat threatened her verbal abusive shouting,swearing ,slamming doors to extreme more than just 'average normal being a teen stage' i struggled work my way through mess destruction i tried run from myself who i was what i'd became ended up making right mess of everything and hurt everyone my family mainly wasn't pretty sight

 

i was put on several different anti-depressants medications by CAMHS and Adult MHT but none of which felt worked or gave me side effects (prozac, mirtazapine, paroxetine) and anti -pyschotic med help reduce anger /aggressive outbursts/meltdowns towards parents lasting hours on end after while none started to work effectively enough to be honest!

 

i still find balance of depression/anxiety hard to get stable/right maintain everyday it's fight draining overwhelming tiring that no one can't really see understand get so frustrating/annoying

 

i think if i'd known i had A.S lot sooner maybe would be slightly easier ... suppose hinsight and can't predict just wish could go back change the past as i would! always known as far back childhood something wasn't quiet 'right' like my friends i wasn't 'like them' a difference my own world and theres seperate i also have dyspraxia so lot was just put down to that or classed as general SEN or development delay nothing was investigated further or fully more!

 

i also taken several OD's after my outbursts/meltdowns mainly af ended up in A& E til early hours of morning with my mum have to be seen by emergency pysch crisis team on call then i was told was safe to go home even though me and mum agreed not! as i was too young to be sectioned and wasn't right place for me so was turned around in unstable state home again! was seen at home by crisis team for 3 days for an hr took me for walk talk nothing special really! i lost sense of true reality in these meltdowns/outbursts was scary frightening and felt wasn't in control at all didn't feel 'like me' at all hated myself my life just wanted way out any way! wanted an escape had enough was so fed up drained ....

 

my depression is very much switching all time up and down like yo-yo rollercoaster ... not good or nice .... exercise has helped me stay healthy mind ( can do opposite do much though) i go gym & swimming ,jogging

 

so hard find peace feel comfortable settled within yourself your life!!! such challenge everything an effort an obstacle not be awakard we avoid as makes us feel uncomfortable to face head on! or just not ready! be prepared for everything and anything!

 

i wrote suicidal note to my college tutor as well self harmed (cut with scissors) in college toilets at college!

 

so yes, i so know and understand ,sympathise/empathise with how your daughter feels right now all you can do is be there like sounds like doing anyway!

 

has she tried keep thoughts/emotions diary this may help her let it out more constructive healthy way? she tried rating her moods during day see how change throughout up down scoring it 1 - being worse and 10 being happy content? is your daughter on anti d's meds? has she been give alternative ideas /suggestions instead of resulting to self -harming? does she get much MH service support/help? anyone she truly confides in with personal thoughts/feelings as this is also important factor when depressed ... does she get autism help/support/ she see counsellor/pyschologist/pyschtrist? your daughter ever tried commit suicide or suicidal thoughts

 

when depression plays up like right now i get real dark thoughts of not wanting face another day ...

 

XKLX

[smileyK]

sorry didn't read your post properly she IS on anti d's and isn't yet of dx with A.S by dyslexia etc

 

dyslexia etc are co-morbid conditions which related closely connected/linked too other 'spectrum conditions' such as A.S it is common that one found first followed by onset discovery of other/s conditions or overlap of many different traits of each it mind blowing mindfield out there! get head around understand

 

there's no easy time to be assessed and likey possiblity diagnosed with A.S as well too as like with me added with puberty can be highly stressful,anxious period in her life with yet still more unaswered questions lie ahead she ever open up fully discuss her depression? how long she been on anti-d's meds for? seem to be working lifting her mood? she probably feelng really confused by the whole situation ..... easiest emotion show is anger when depressed as shy away from really going on behind everything else and anger is common reaction in depression is probably pushing you away as she scared of what happening doesn't know what to do for the best how work things out make them 'right' as such...

 

how long she been self-harming? was she secretive with it? does she seem hooked/addicted to doing it? does she say how she feels when she does it? does she let anyone know when she done it? with her GCSEs at school extra strain /pressure on top of her too! that making her anxious! all swirling around her! bless her! i can really see myself in her like mirror image so alike! what CAMHS said over her self harming or that why went CAMHS in first place like me? (depression & self -harm) do you her anger/aggression connected to depression/self-harm? this anger /aggression new or old issue? and you noticed any real triggers that set her off each time or different? what do her teachers at school say managing/coping in class with subjects /her mental/emotional state of mind?

 

sorry all questions! hope don't mind!

 

hope meds work for your daughter though! (fingers crossed) and also that don't wait too long for an assessment for A.S they given you timescale on this?

 

i'd read some A.S (anger /aggression ) books may help understand more and also may cover issue of depression /self harm also in there!!!

 

XKLX

[Aspiemumto1]

Thanks guys for sharing, it cant be easy but the insight helps. So much to take on board what you are saying. The issue with anger/depression etc seems to be so common in AS/ASD. I think it must be because it is such a struggle to get anyone to listen to you that the problems just build until they explode.

 

My daughter self harms with cutting and picking at her skin. She has been doing this over the last 2-3 years. At first she hid it from me and I was totally gutted when I found out. She has been on the Anti=D's for about 6 weeks now. They have upped her dose and she seems to be slightly better. "I still feel empty inside but the horrible feelings have gone". We made a deal that if she went on the medication that she had to tell me how she felt and if she was harming. This seems to be working ok so far and she will tell me if she has done it or if she feels like doing it. I dont think she is hooked on doing it and she cant explain how she feels or why she is doing it. She finds it very hard to express how she is feeling and often doesnt seem to understand her self. She often says "If i could understand why its happening, it wouldnt be happening would it" In the early days there were no real triggers for a meltdown, she would just go off for one for no reason. Now I reckonise it as maybe someone doing something that she doesnt like. She might ask them to stop and if they dont she will meltdown. Not easy when you have an irritating 13 year old brother lol.

 

We are being reviewed by CAMHS in a couple of weeks. They are meant to be offering 1 to 1 support and protected behaviour therapy while we are waiting for the diagnosis but it is all very slow coming, and I am not very patient!!

 

Darkside, I have asked her all the usual questions about triggers etc and school and she finds it very hard to explain what she feels inside and cant explain a lot of things. School have been useful. After I got a text from her at school saying she wanted to self harm and was suicidal, I met with the school and they are being supportive. She is able to go into a smaller, quieter area to study if she wants to and she seems to prefer this when she is really low. Just need to get her through the next 8 weeks and her GCSE's.

 

Just a question for both of you, if things could have been done differently for you that would have made things a hell of a lot easier, what would it have been? What kind of support would you have wanted or may be needed. If you dont know it doesnt matter, im just trying to find ways of supporting my daughter and maybe hearing from someone who has been there might have a better idea.

[darkshine]

Just a question for both of you, if things could have been done differently for you that would have made things a hell of a lot easier, what would it have been? What kind of support would you have wanted or may be needed. If you dont know it doesnt matter, im just trying to find ways of supporting my daughter and maybe hearing from someone who has been there might have a better idea.

 

If things had could have been different I'd have wanted my parents to see that I was suffering, to be told that they saw it and that they cared, I;d have wanted them to try to help me instead of making me feel bad, to have told me that they would be willing to try and understand no matter how long it would take - and that they were on my side, that we could have worked it out together.

 

Having a diagnosis could have made things easier, so that I could understand why I didn't fit in and why things didn't make sense, to be told that the stuff in my head was just stuff and that it didn't make me a bad person, it didn't mean I should be punished. And by having that diagnosis things could possibly have been done to make things easier, like learning how to express myself, how to talk, being taught social skills and emotion management, having support and understanding instead of the opposite. This could have had a roll on effect with school work and further chances.

 

It has taken me years and years to be able to write like this, to say what is in my head - I only got the words after trying for years, if people had understood this was a problem they could have helped me to understand what I felt and how to explain it to them.

 

I really think that I needed a psychologist by 18 - I didn't see one until I was almost in my mid twenties - that was too late, by that time I'd already wasted so much time. I've wasted more since due to my continuing journey of understanding.

 

They say that people with AS can be 3 years behind in maturity, I think there was some truth in that for me. It makes a difference when you think about what levels of understanding people have.

 

The biggest hurt was I felt unloved, unwanted and useless - I needed someone to say all the good things that I really needed to hear, and I needed patience, and support.

 

If you want your daughter to be able to explain then the best bet is to help her obtain the skills and the tools to do so. At 16 I couldn't explain what I was feeling because it was so mixed and confusing and shameful. My vocabulary of emotion words has grown a lot over the last 15 years - but I still struggle to explain myself when I get wound up!! So I would recommend finding ways for her to calm down or release some anger, frustration, aggression (using anything from meditation to loud music to exercise) what activity will depend on her interests (I went with computer games, loud music and cycling or walking) its easier to talk when you aren't wound up to a point where speech can be effected.

 

Because I was stubborn as hell in my black and white belief system finding balance is crucial in my life too - so not getting those negative beliefs too set in by arguing them with evidence and logic.

 

I'd have wanted activities and conversations that would have given me a sense of worth. And something to do that made me feel good and useful. I needed trust and communication, I needed to believe in something or someone, I needed to feel loved (without being smothered).

 

...........................................

 

I know you said dyslexia is an issue so writing isn't going to help too much... a possible way of bypassing this issue is to use drawings - either expressive drawings for feelings (red spikes for anger, grey clouds for feeling down, black for really down,) could add some positive ones so that its not all negative - trying to highlight good moments could be useful.

 

Another way drawing can help is she can do comic strip type things to explain what happened - so say she has a bad day at school, she could draw this out in a series of boxes.

 

You could sit with her and help and make it an activity that you do together and that could be helpful too. You could show her an example by showing something in your own day where something made you angry or sad (not related to your daughter!!) and even if you can't draw well - by doing so you will show her that the quality of the pictures doesn't matter - its the story that does.

 

Colour can be really useful for showing mood.

 

I'm suggesting this because I used this method when I was briefly looking after a 12 year old that couldn't write very well - the pictures also showed patterns of mood and events which can be useful to see if there's things that stand out that can be resolved.

 

Hope this helps

[Aspiemumto1]

Thanks for your reply Darkshine. I think I am doing ok with the supporting her bit. I think it is fair to say that we do have a good relationship, and she knows that I am there for her and am trying to help her any way I can.

 

The thing I find interesting (if that the right word) is how you describe not being able to explain yourself, your emotions and stuff. My daughter is exactly the same and finds it difficult to tell me how she feels inside, she just cannot find the words. Another way this comes through is at school when she has lots of ideas in her head but just doesnt know how to get them onto paper. She finds being unable to explain herself or understand herself very frustrating and some times when I try and talk to her it can make it worse becausse she cant tell me what is going on.

 

We will keep plugging away until we find the right way. Thank you so much for sharing, im finding it really helpful. x

[darkshine]

With not finding words for things... I used to wish that there was a type of language I could use instead of English - either made of telepathy or sign language/gesture - I used to gesture and hope that people could infer from the movement what I meant or what I was thinking or feeling. I also occasionally tried looking people in the eyes and hoping that the same things could carry across...

 

It doesn't work though so I had to learn how to say things in English, I've always enjoyed writing so that's the area I am most developed in - you wouldn't believe how hard it is to talk in real life in comparison!!

 

I hope you find ways forward

 

PS - I still do wish that there was a sign language or telepathic method of communication... if I'm honest - it would be so much easier!!!

Edited May 8, 2012 by darkshine