WORRIED SICK ABOUT SON HEARING VOICES

[cmuir]

Hi

 

I'm worried sick about my 6 year old son. Since he was very young, Rs mood swings baffled me - specifically because you could literally click your fingers and his mood would change. He truly is like Jekyll and Hyde. We had a social worker for almost two years and she frequently commented on this and his consultant has suggested that R has a mood disorder as well as AS. I'm convinced by this now ... The past two weeks have been really difficult (aside from the fact my grandfather passed away and we're having to pull down ceilings at home and living with a horrendous mess). For example, this morning R woke up demanding and shouting that I put a DVD on for him. I instructed him to do it himself because he's a big boy and very capable. He kicked off, but soon calmed down and was fine for a good half hour later. Now for the disturbing bit ... Suddenly R told me that he's been hearing voices. There's a good voice and a bad voice that tells him to do things. When I probed a bit further, he told me that the good voice sounds like me, but the bad voice is a boy that tells him to kill himself. I'm worried sick bcause this isn't the first time he's said this. He'll happily be playing in his room, then will come running through to me in the lounge saying that he wants company because he can hear voices. It's heartbreaking because he's so young and I can't bear seeing my little boy in some kind of turmoil because he gets so depressed, wraps shoelaces around his neck, runs in front and behind moving cars, try to get a hold of sharp objects and cuts himself. We've been referred to CAMHS who have decided to ignore what I'm telling them which makes me furious. Last week I managed to record Rs voice on my mobile phone, saying that he wanted me to give him a chicken knife to kill himself. He was crying, then hitting himself in the face with a wax candle that he'd made at school before trying to eat it. Thing is, I'm not naive enough to think that they'll actually listen to the recording without twisting the context and somehow end up pointing the finger at me. Anyhow, today I've contacted the social worker and asked for her help. I'm also going to contact our GP and consultant on Monday morning. Just at a loss as to what to do because although I can persist (I've been reporting this for a long time), I cannot make people listen and do something. I'm just wondering what it's going to take before anyone will listen. I've had a look at the Young Minds website and will give them a call on Monday, but I'm not sure what other avenues we can explore. Difficulty is that R behaves differently in different settings. Both myself and R went on a 3 month programme run by CAMHS which turned out to be the Incredible Years Programme. They only saw glimpses of his behaviour, but as I pointed out, the unit isn't like home or school plus he was having a great time working in small groups (only 6 in the class at any one time) and loved playing with dinosaur puppets! Attending this programme seems to have done more harm than good (I felt my hands were tied!) in that CAMHS say if he had a mood disorder it would have been obvious to them. I argue that it wasn't initially obvious to them that R has AS and that although he can seem very normal, there are spells when it's very obvious. Guess I'm trying to illustrate that if someone's eg depressed they're not depressed all the time - people can hide depression to mislead others. In addition, everyone's mood can change, subect to several factors eg tiredness, etc. Surely same could be said for eg someone suffering from bipolar. Help!

 

Caroline.

[justamum]

I don't know the answers as I am waiting on CAHMS for my son. However my son say he has 'weird thoughts' that tell him to do bad things like kill himself, kill someone, steal and vandalise. He says he doesn't have to do these things and the instructions only come when he is stress or angry.

[Guest Lya of the Nox]

you are doing the right thing

i would keep a diary of when and what he says

make sure he sees or you see consultant

 

thinking of you

xxx

[kog]

hi, i've got a 13 year old son, dx autism with co-morbid bi-polar.

the voices started at about the age of 7, along with visual and sensory halucinations,(and several atempts to kil himself)

it has taken many years under camhs for them to dx the bi-polar as he is still so young, original dx autism and pschysotypal disorder.

you are doing the right thing in getting as much evidence as you can! it took almost a year of CPNs visiting 3 times a week and regular visits from the psych for them to say it was bi-polar! and although at the time it was very scary and frustrating, they do have to be extra careful when dx someone so young with a mental illness.

sorry i cant offer any real advice, just wanted to let you know you are not alone, keep telling them and keep a log of every thing that concerns you, wish i could say something more helpful, as i know how awful it is to see your child like that.

[Enid]

My son was recently referred to CAHMS for a 4 week assessment, as his behaviour had/has deteriorated rapidly, Both the GP and the consultant child psychriatrist asked them to look for signs of psychosis, as he was saying he was hearing voices, threatening to kill himself, and having trouble sleeping at night as he kept seeing ghosts, They discharged him after 4 days saying his behaviour was no different from last year when he went for a four week assessment, and put it in big bold print that there were no signs of psychosis, everything I told them they had an answer for and I was left feeling like a mum who has just lost control of her son, which in fact is how I feel most of the time! So we are left with no help as SS closed the case after initial assessment. My only advice is to keep slogging away at it. Incidently my son had a great time on the assessment, He went to the zoo one day (I have never took mine to zoo`s as dont agree) swimming next day, rollerskating next and a donkeypark on last day!! My other 3 would LOVE to go. Enid

[smiley1590]

hope this helps u feel not so alone or isolated in ya sons probs ma mums worked wid autistic child/ren and she neva worked wid anyone since she worked there wid ma difficulries n probs <'>

 

im an 18 yrs old female im UK midlands (off dx wid AS at the age of 14 yrs old) (also wid dyspraxia dx when younga)

 

currentli hearing and seeing fings that arent there thought i was oni one feels like im going completeli mad and insane these voices of mine get very threatening when angri or stress, worrid or depressed anyfink like that i become careless to the point of wanting to run in front of cars and stand on the white ready to get run over im not afraid of nyfink when im like that!

 

ma psych who saw me for an emergency appointment sed it wasnt com morbid bi-polar disorda or shicophrenia , schzioaffective disorda, pyschosis but just ma high anx levels playing havoc wid ma mind and stuff i have alot of worry, anxiety and stress in my life never really got rid if ny of them. i dunt recieve very much support or help neitha does ma family

 

i dunt have a social worka which most peeps seem to have that are like me n have a wide range of mental health issues with their AS/ASD i found alot of peeps. i speak to on msn live wid AS hear voices at sum point or see fings that arent there so i dunt know what the connection is there but there must be sumfink like the amount of worrying n axious we have in our lives adds up to the demanding voices it very tempting to listen to these frightening voices i also suffer wid panic attacks im on meds atm for major depressive disordathe meds called mirtazapine 30mg so they quie strong all theyd oing atm is helping me sleep! but aint bin on them that long as thought they were making ma probs worse not betta but i suppose i didnt give them chance to be honest!

 

i have to cay meds havt worked or touched me but then everyones different even wid the same condition label

 

i wish i got both more help n support! e.g. a social worka not just a pysch i see every 2 months or so i feel they fink ma life a joke! i get tempted to steal from shops alot too.

 

i becum paranoid and obsessive alot. i just wana feel normal n supported throughout so i dnt feel so alone n isolated, scared!

 

i try n igorn want the voices tempt me to do. beg me to do. im scared of how far one day these voices will push me to dangerous new levels n i wunt fink twice about doing it becuse even thou when having a 'gud headed day' may still be pushed 2 extremes which will then turn into a different thing altogther! lucki atm i have ma parents arund me in the huse as fink when i move out n get a huse of ma own then the massive probs will ###### bac n continue to haunt n plague me as i have so many concerns n fears/anxieties about my future n where i will lead me! i dunt wana be left on my own as i known i mite not be able to stop maself to doing that one step too far n no -one will be there to 'rescue' me from maself . i scared of my own behaviour n mood sumtimes!.

 

love ya loadz

take care

kirst-LoUXxXXX

[mum23]

Hi guys, have any of you looked into OCDs my brother has OCDs along with his Aspergers, as does my son. Both have some horrid thoughts and both have exactly the same issues around wepons. I am not saying this is the problem your kids have but you might want to look into OCDs it is not just about repetative behavier their is a lot more to it, hearing voices is also a symptom of this condition and it can really control your life.

Hope you find some answers soon.

Anna

[Clare63]

It might be worth investigating what Anna has said above we had simular with DS's OCD.

 

Hope you guys posting above will finally be listened to and get some much needed support and understanding from the "proffesional" its dreadfully worrying when you seem to be ignored or not taken seriously, like you say how far does it have to get before they do something.

 

<'> <'> <'>

 

Clare x x x

Edited April 27, 2008 by Clare63

[mum23]

I found a good web page that gives an insight into OCD it is found at: emedicine.com/med/topic1654.htm

Hope this might help explain some things.

Anna

[loobylou2]

Hi Cmuir, sending you a great big <'> as I know how worrying this is for you. My daughter started to hear a boy telling her to kill herself when she was 13 and she started to self harm as a result. She was then referred to CAMHS who gave said she may have Aspergers and then later dx'd her with Bipolar disorder as well. She is now on medication help control her anxiety as this 'boy' only appears when she is having or about to have a depressive episode. Keep on at CAMHS about how serious this is and how much it is affecting you and the littl'un. They will listen eventually and then you can start treatment (either medication or counselling) and things will improve for you all. Take care <'>

[cmuir]

Hi kirst-LoU

 

Thanks so much for your response. It's very insightful to hear from someone who seems to be experiencing someone very similar.

 

Really hope you get the help and support your need.

 

Guess the only thing I can say, as I've said to my son, is that you need to be strong and ignore these voices. I think it's important when you have these 'episodes' that you tell someone who can help you through it (or come here!).

 

Best wishes.

 

Caroline.

[LizK]

No personal experience of this but was talking to two mums whose AS children describe hearing voices. From what I gathered it is not that unusual in autism often relating to them detaching the normal internal dialogue that NTs have running through their minds and making it almost a separate entity. So it's nto hearing voices in a truly psychotic way but hearing their own thoughts? From the conversation both mums said their child heard these voices more when stressed or anxious and once child does have a lot of OCD traits too

 

Lx

[Kazzen161]

Following on from what Liz K has said, there was an interesting programme that talked about this tonight: "Am I Normal" with Dr Tanya Byron (BBC2). I don't know if it is repeated, but it was very interesting. It did say that all people hold converstaions with themselves in their heads, and that that is normal. One person on there hears lots of voices all the time, and he said he finds it best not to try to ignore them, but to integrate them into himself. Often these voices are triggered by the loss of someone close, and get worse when the person is stressed. Dr Byron said she saw her dead father in her bedroom, and knows she can't have really seen him, but that it felt so real.

[Bagpuss]

Caroline <'>

[smiley1590]

hey caroline

 

hows ya son doing...? i know how hard it is to struggling along wid the demanding type voices as u fink ya going crazi made insane n that peeps will judge ya! just to let ya know alot of AS peeps both ya son n ma age comment to me n how as they get older thre difference both becum clearer not onli that but seem to ###### across more louder n worse i dunt know why this is! i bin told by pyschs that the suicidal voices in ma head r just ma high anx levels playing tricks wid ma head messing it rite up completeli i hate the voices get them when have alot of backgrouond noise/ distrubance i not trying to make ya son lfy look bleak on here for u just trying to see how it is from ma own personal POV

 

i fink alot has to do wid our high anx n stress worri perception that AS has to do wid as i have paranoia, depression, anxiety, low self-confidence / esteem n self harm as that helps me cope from day to day basis but peeps keep caying to me how can ya like hurt yaself it not abotu liking it it becum inside of u a habbit an addiction like drink like drugs but not as well known in society across the board dunt u fink...? is ya son getting any more help n support wid ma local mental health service it always been getting blood out of a stone because ive got on n dune it by maself n it looks like im coping n dealing wid everyfink going.

 

do u get alot of info, support, help,guidance wid having an AS child around ya...? ma mum n dad onli had abit wen first off dx wid AS at the age of 14 yrs old im now 18 but theyve had to do it on there own realli along the way wid ma twin bro who deafblind but he so indenpendant it untrue u better than me it tell ya that!lol

 

ma nan dying ma mums her full time carer so times are so hard n difficult n times as wid ma nans condition u neva know from one day to the nex whetha that guna be her last day wid us wich mean she wuldnt be any more pain or suffering whch is gud dunt get me worng! but going to miss her like mad! she onli 68 yrs old!

 

i havnt got ova ma grandads liva canca death at the age of 55 yrs old i was onli 4-5 yrs old i was realli close to him i worshipped him i miss n think about him very single day i just cant move on from the past that easy or from the neg thoughts ma head tells me to think and feel! it realli annnoying n frustrating! n tiring/ exhausing!

 

is ya son on ny meds/tabs...? if so for what...? has e bin on ny before...?

has ya son bin off dx wid anyfink else i have dyspraxia but was off dx wid that at a younga age that AS but ma mum forced it on child doc as e didnt wana to dx wid it in the first place lucki mum pushed throu n won the battle there!

 

i have bullying alot of ma lyf n peeps judging me alot of the time no one understands me alot of the time not even family n dunt have many friends get socialli isolated becuse ma mood so low off n stroppi at times n find it hard to mix in n wat to say get stuck im ashamed of feeling that way but i do it gets me real down on why i have to be so diffrent from ma peers all the way throu even now at colege im still slow n that!

 

is y son violent towards u...? gets depressed...? isolated...? suicdial...? anxious...? fearful..? scared..>? tired...? irratable..>? unhappi...? tearful...?angri...? annoyed...? frustrated...? confused...?upset..?miserable...?

 

does e know whats wrong wid him...?

does e tell ya wat voices say to him n tell him to do...? mine dangerous suicidial n life threatening to be quite truthful wid ya!

does e find lyf traumatic n stressful...?

is e still at skool...? is e statemented becuse of AS...?

 

hope ive helped abit anyways

fanx for ya comment

 

Kirst-LoUXxXx

[cmuir]

Hi

 

SHALL I JUST SLIT MY WRISTS NOW? (HAD AN APPOINTMENT WITH CAMHS) ...

 

Because I've kept a diary/notebook of everthing that's been happening, CAMHS said that I'm being negative. It's like this, I said, "You don't go to the doctor's and tell them you feel great, do you? I'm here to discuss difficulties that Rs having and I see a child that's in turmoil. Because so much happens on a daily basis, the only way I remember things is to write them down. How can anyone help if I'm not able to say exactly what's happening eg how R acts and what he says?". I left the session after being made to feel a complete failure. They kept making reference to the Incredible Years Programme. However, one size does not fit all! What will it actually take before anyone helps? Came to a decision this morning ? I'd like R discharged from CAMHS. I feel CAMHS involvement is doing far more harm than good. They're messing around wanting to do family trees and pointing the finger at me instead of concentrating on R. I've had it with them. Problem is where do you go from here?

 

Caroline.

[Suze]

Sweetheart.........I,ve no answers as to where to go from here..but please don,t slit your wrists o.k ............you must feel so down about this...are ,nt they supposed to be the people who can help with issues like this??.........big hugs suzex Edited May 1, 2008 by Suze

[Shnoing]

Perhaps it helps if you get them sort of 'peer reviewed', be it by the office of your local MP or by someone of the suicide helpline.

If they get told off by someone 'on their level', they usually think over their behaviour.

[farfalla]

Hi I just wanted to add, when my son was about 2 we moved out of the home we had with his father,

and after a few weeks he would be talking to himself in the bathroom or in his bedroom. It wasn't until one night he said to me, *that light is angry mummy* which started a conversation resulting in him telling me all the light bulbs in the house were nice and purple except this one which was red

 

he would talk to the lights

 

...... i thought it was a child quirk thing,and possible trauma from our move so when putting him to bed would ask him which colour the light bulb was.......

 

when we moved in with my mother, when her husband died, niam wouldn't sleep in her room because of the bad light.......

he did grow out of it, but if i ask him now (he is 12), about the colours of the lights he tells they are all ok.....

 

sorry i can't help but wanted to share my tales with you too.

Edited May 1, 2008 by farfalla

[hev]

caroline i also discharged steve from cahms,they used to make me very stressed by their lack of help so i do know what you mean <'>

[Minxygal]

Them being so negative about the use of a diary is really bad. Afterall that is exactly the advice you would get from the NAS if you rang them. What do they think parents are, memory machines?

I'm sorry that you both have been treated in this heartless way.

As for the voices I agree with those that said that OCD is something to explore, I've heard of children with PDA using voices as a demand avoidance too so maybe thats another one you could look at. I suppose it coupld also be a possibility that he's just thinking in his head and thats what he's interpreting as voices or perhaps voices in an imaginary friend sort of way.

Having talked to hundreds of parents I have to say I'm finding it hard to think of one at the moment who had a positive experience with CAMHS. I hope you get some answers soon. <'>

Mandy