is this it for the rest of our lives?????

thanks for all your replies all your words of support do help. The last few weeks have been really tough both with my son and issues within the family. I have still been making phone calls and emailing people and im still hitting a brick wall the only person who has recognised that we arent getting enough support is the occupational thearpist she has told the school we arent getting the right support and shes trying to phone around and get us some support. My sons anger has not calmed down im living on the edge all the time all of us are and its having a huge effect on our 4yr old daughter. She never has a moments peace as our son is constantly going on at her shes not allowed to play with her toys or play by herself cause he goes into a fit of rage our daughter is no longer eating and is very withdrawn and its breaking my heart as my family is falling apart in front of me and theres nothing i can do ive given up hope of ever having any support or having some sort of break as ive resided myself to the fact that this is my/our life forever and im just a punchbag for our son and that our other 2 kids will grow up and resent us for not doing more for them when we have tried so hard really sorry just need to let it out as im fed up of crying all the time x

first i havent a clue who or what a 'play therapist' is and second, clearly they dont do that great a job, insulting parents and claiming they cause autism in their kids, i would not take much stock in what that person says, they havent a clue what they are talking about, and good on you for complaining, what a disgrace to therapists.

having any kind of depression will  make this a helluva lot harder on you , you need to remember you are just a human being, you cant do it all by yourself and especially if you are having your own problems on top of it

so youve shouted at him and got angry, thats human, your not a machine are you, try to lighten up on yourself, there are times ive lost it with my partner even tho i have known about his a.s for years, it happens, you cant expect you will ALWAYS be able to deal with it the same way

of course you are doing the right thing, you are doing the only things you can , you have no help and a lot of idiots around you saying 'its your fault' 

ask and demand help from them, but dont expect it, they are a sickening trend in this soceity where peopel do the least amount of work they can and know nothing about their own job

you are amazing and are doing amazing, . please take the time to remember that

hi mummyof3 + saddad - I am still truly shocked that the services aren't meeting your needs.  Your local council will have a Chair of Children + Families (or similar title).  This person is a councillor.   This dept will also have a director. Check out your council's website.   You're local area (your ward) will also have councillors who should hold regular "surgeries" for residents.  You can go + see them - their surgeries should be local to your neighbourhood.  Yes, the financial cuts are more than severe, but if families such as yours can't be helped, then I don't know who can be.   Your MP could write to the council on your behalf.  His/her MP surgeries should also be advertised in your local paper.  He/she should have an office in your town/city. bw

My daughter is 14 and has been diagnosed with ASD some years ago. Myeldest son has left home to get away from her he moved to kent and wants to move to Scotland next. my other son also wants to move out ASAP and my other daughter has asked if she could be fostered out so she can get away like the others from her sister. She is in mainstream school and is doing well there, she is one the school council and a form rep. and is doing excellent in all her lessons coming top in most subjects. Due to her autism she only has one friend at school who has an autistic sister, and my daughter very rarely goes out. She takes melatonin at night, she is still in nappies at night and has a dummy she walks around the house naked apart from her knickers.

When she gets angry she gets very angry, she got angry recently at her sister, my wife and i tried to stop her attacking her and she pushed both of us in line out of the way, and between us we weigh 30 stone. she throws things around and damages things, she will bite, scratch and anything else she can think of in her temper.

Tonight my other daughter ran away from home after her latest outburst as she can not take any more. My son wants her put in a secure unit as he thinks it will help her. but i will not let that happen. I am at my wits end and feel that my whole life is unravelling in front of me. My daughter loves hugs and is very intelligent and maintains eye contact and you can have inteligent conversations with her. And tonight she started her first period. Oh Joy. Please say a prayer for us, we need it.

thank you so much for all your replies it really does mean alot to me. Brandon has just been accepted for art thearpy over a 10 week course which we are hoping will help him in expressing his feelings and help us understand him. ive just finished picking up the contents of his wardrobe as he threw it all down the stairs because i gave him the wrong shorts!! last night i had to pull him off his sister as he was trying to punch her in the face all because she walked behind him while he was watching tv. we have just had our loft converted into a 3rd bedroom which is his room and he knows thats his space and he does go up there when hes having an outburst but sometimes he refuses and threatens to hurt me if i tell him to go there. I cant pick him up anymore hes to heavy and strong so i just grin and bear what ever he throws at me now. ive made 5 phone calls this week and each and everyone has said the same thing " sorry we cant help you" ive begged them ive cried down the phone to them and nothing not even a "let me see what i can do" i even called social services and told them that im on the verge of losing my temper with my son that im scared i will hurt him and they said "well you havent hurt him so you dont need us" any fight i had left in me is slowly slipping away cant remember the last time i slept more than 3 hours at night cant remember the last time i ate 3 meals a day i know it sounds like im wallowing in self pity and i suppose i am but its the only thing i have left. i look at my 3 kids and my heart melts i love them beyond words but this isnt life this is something else and i dont know what to do once again thank you all so much for your replies it really does mean alot to me xx

Hi, I'm no expert and I know nothing about raising kids, so, sorry if I say something that you already tried.

How "busy" is your apartment with the two younger siblings and everyone? Does the boy have a quiet place to retreat to? Not just "his corner of the room", but a separate place? 

Because I was thinking, at around that age, I personally spent most of my spare time in the attic in the far end of a closet. I brought a flashlight and a book and some chocolate, and being in this quiet place with nobody moving and fussing around me was the best time of the day. If I hadn't had that place, I'd probably have become aggressive too (I was only aggressive towards myself, which is less disruptive).

Of course it depends on the size and layout of the apartment whether that is possible... And I don't know him, just brainstorming here. 

Hi Crystal12,

I strongly agree with all your words of encouragement.

However, I need to correct one misunderstanding. Unfortunately, the NAS helpline does not have sufficient resources to be able to offer to call people back. If you are unable to get through, though, please do try again - perhaps at a different time of day. We accept all the calls we can.

The helpline is available 10am-4pm, Monday to Friday, on 0808 800 4104.

Best wishes,

Alex R - mod

Hi there.

In answer to your question - is this for the rest of our lives, then I would say no. Hang in there and things will slowly improve. When my son was about 4 (before he was diagnosed) I was really scared of him and his tantrums. He'd kick out and fight us and yell and I was on edge the whole time, dreading the next one.

Then I decided that it was rediculous. I'm an adult and I can deal with his behaviour. So I started to make myself have a "ho hum, here we go again" kind of attitude to it instead, and believe me, it worked. I stopped being scared of him and just used to pick him up and dump him on the stairs to get over it.

Now, I'm not belittling what you're experiencing - it gets harder to do that as they get older. My son is now 11 and is nearly as tall as me and beefy. But, he rarely has tantrums and I can only think of 1 time in the last few months when I've had to man-handle him - which took all my strength.

As they mature, in my experience they do get better at articulating their feelings - if they have the right support. You're obviously a great start as you care so much. And fight like hell for additional support. Don't give up on that. You all deserve it.

As others have said, don't be afraid of showing your emotions clearly. You need to be so clear with your son so he isn't confused by what he's seeing. Yes, it might shock him to be shouted at, but he will get over that and should understand that you're angry at what he did. We also implemented sanctions for that kind of behaviour - taking away his favourite things like computer and tv time.

A good technique we were taught by our support worker was counting to 10 to get him to a time out place if he was tantrumming. We explained it to him when he was calm, so that he understood that we would start at 5 minutes time out and each time he refused to go, we would add a minute until we got to 10. If we got to 10 minutes, then he would also lose a treat like some of his tv time. The key was to give him time between each increase to process the information and decide that now was the time to go to time out. That, by the way, has also worked with our other kids!

Anyway, I hope some of this is useful - and please don't despair. Things will improve. Take control and be strong.

Best wishes!

hi all thank you so much for your replies ive found some real strength in your words you have all made me realise im not alone and im not the only mum feeling like i do. Looking back now after reading your replies ive realised the signs were there from about 3 months with our son. He never liked people looking at him he would always cry even family members if they looked at him he would cry he never liked lots of cuddles just prefered to sit on our lap and be left alone and liked a cuddle when he felt ready. He always hated loud noises hoover, washing machine etc. I did put in a complaint against the play thearpist and ive told the school i dont want her to have anything to do with my son not now not ever which they have respected. I have screamed at my son before when i just didnt know what else to do and the look in his eyes broke my heart and he wouldnt talk to me for the rest of the day. I have a meeting with the school this afternoon to discuss new ideas on how we can get him and his sister to spend some time together. I to can no longer restrain my son when he gets violent i just have to let him throw things and try and move things and my other 2 out of his way. after we do sit him down and explain why his behaviour isnt acceptable and we let him explain to us how he feels. I just need to know im doing the right thing that things arent as bad as they seem. im doing the early bird plus course which im hoping will help me with my son and give me some confidence with him. this site is a god send and once again i thank you all for replying it really does mean alot to me xx

On the night of my leaving do, 6th September.

I booked a sitter, well know to the kids. My husband chose to meet me at the venue, later one.

Mark barracked the door and started to throw shoes and boots at me, in front of the sitter, (she knows us well and is the kindest girl).  Then ripped the necklace from my neck and scratched my face unti it bled... I arrived sweaty, scratched and exhausted, sans necklace having to explain to my colleagues of 12 years, why and how.

Mark is too strong for me now and a real tour de force.  I cannot restrain him anymore. Have you found any advice about this?  I fear for the future.

This forum is a god send.....

Hi Mummy of 3,

To reinforce the above, insist on help from agencies.  In my experience, they will always try to push back, until you find some one who empathises.  I too was told that it was my parenting style, back when our son was 5, three years ago and sent away with a flea in my ear!!!! I laid low for nearly 2 years, then at Christmas, our whole family unit nearly fell apart and we schlepped back to the GP and insisted on a fresh referral.

You are not selfish at all, you are wonderful, trying your best and I am in the same boat as you.  Scared and wondering how Mark will be when I collect him.  He is violent towards all of us, my husband, our 10 year old daughter.  As we are the nearest and dearest, they seem to lash out at us.

I have found out who my friends are in the last few years, some pity us, some just don't get it and some think of Mark as just plain naughty and I a mother that cannot discipine.  I've just given up work as well and although relish the time now available, we will struggle financially.  I would never have found the time to get onto this forum, for example.  

Keep on pushing with the agencies/health authority/primary care trust, etc.   They want us to give up, as it will cost them less money.. I'm 41, have paid taxes for over 20 years, deserve the support and benefit of professional guidance.

Good luck, keep in touch, keep strong... at least we all understand and I think this web site is very useful for resource, as well.  We are planning a trip to the Dentist and with the sensory issues involved Mark will be terrified.

Any hints?

Thinking about you and keep strong.

Clare. xx

Hi mummy of 3,

I noticed the following in one of your posts: "Im scared one day i will lose my temper and really shout at him and take all my frustration out on him which i know isnt fair and its not his fault thats why i just cry all day everyday as its better than losing my temper."

And, well, No! No it's not 'better' not in any sense of the word! OK? Beating yourself up emotionally everyday is not in any way better than you expressing how you feel. And you know what? It might just change your sons behaviour too, if you were to lose your temper with him!

Now, of course, don't be violent, or abusive, towards him, or anything like that, but it could be that a good shouting at by you is exactly what he needs.

You see, we, on the spectrum, often experience the emotional world in very 'black and white' terms - for example, most of the time if you ask me how I feel, unless I'm really happy, or really sad, I'll just say something like "I dunno" - 'cos I really don't - I don't really 'feel' anything most of the time. But when I am sad, or angry, or happy, or whatever, I am very sad, or very angry, or very happy.

Similarly, we also often find it very difficult to understand why others feel the way they do - so for example, your son probably thinks you cry just because you're sad, and not for any other reason - not because of his behaviour - and more so if the signs of how another person are subtle - so we only know someone is 'sad' if they're really sad, bawling their eyes out, or that they're angry if they're shouting and screaming at the top of their voice in an angry agressive manner.

So, you need to show to him in no uncertain terms that his behaviour is wrong, and how you feel, even if that does mean 'losing it' and shouting at him.

It most probably will upset, and even frighten him, but, another thing we on the spectrum tend to do is get over things really quickly.

So, get angry with him, shout at him, send him to his room, then calm yourself down, and by the time you're calmed down, he almost certainly will be too, so go to him, say you're sorry, and explain why you lost your temper, and so on.

Now, let me stress again, I am in no way advocating that you be violent, or abusive, towards him, or anything like that, just make how you're feeling absolutely clear, and let there be no subtlety, or ambiguity to it.

In fact you should be doing that in all your communication with your son - be clear and unambiguous at all times.

hi again mum of 3.  Just meant to say that the play therapist shd have a complaint lodged against her.   I hope she's not giving any more pearls of wisdom to other parents.  When my son was little + just diagnosed (late 80's), I got 2 books out of our library on autism.  Both of them sd it was my fault (see a previous post).  I believed this because these books were written by "professionals".  I found out months later these theories had been well+ truly discredited.  I know it's difficult emotionally, but she's not the Brain of Britain, to be kind to her.  We all look for a reason for the autism:  was it something we did or didn't do, etc.  But really it seems to have a genetic element to it.  I noticed my child was different from 3 wks of age.  Looking back I can see that he was different from about 3 days old.  He was born that way.  I know you'll always remember what she sd, but I hope it loses the emotional impact as time goes by.  good luck.

thank you so much for your kind replies your words have today seem a bit more bearable. Yes there are times when my daughter does wind him up and we discipline her accordlingly there are also times when she is just sat there watching tv not moving or making a sound and my son will go for her ive had to pull him off her so many times ive lost count I dont like it but id rather him hurt me than my daughter we have sat her down and tried to explain to a level that she understands about her older brother and no matter what he has done to her she still says she loves him and will look after him and she tries to give him cuddles even though sometimes hes not always in the mood for cuddles so we tell her to blow him a kiss and throw a cuddle at him which makes both of them laugh. i just cant get the play therapist words out of my head she even said that my son was violent towards me because my husband is!!! she has never met my husband and theres no way on this earth my husband would ever physically hurt me so he was extremley angry when he heard this. i will call the NAS helpline tomorrow as something has gotta give and once again thank you so so much for your kind words x

hi mum of 3. as you know,  you're being let down by the services who are supposed to help you. Yes, cuts to local government + the nhs are severe but they shd still find somehow/someway to help.  I am shocked that all the people you must have approached have been so unhelpful.  If you haven't, ring the nas helpline for advice.  I understand that sometimes you get an ansaphone but that they will ring you back.  Information/knowledge is power.     Also you need to keep on at the services to get what you need, or at least some of what you need.  It's so difficult when you're at a low ebb, having to keep on fighting, but it's the only course of action.  How is your son doing at school?  As others have sd, there may be things upsetting him that you're not aware of.  My son, now an adult, dislikes anyone interrupting his time with someone else.  He makes it plain, verbally.  It may be that what he sees as his routine is being disrupted + that may make him upset, or he cd be sensitive to noise, touch, clothing, etc.  You can end up like a detective trying to pin any issues down.  I wd definitely up the temperature to boiling point with all those you've been let down by, as it's obvious you need support.   And no, no, no, you're not being selfish by missing your job.  You just need your life + your family's life back in balance.  That's not a lot to ask for.  Getting support from social services + education when my son was small helped massively.  That's what's missing, as you know.  Also, just a thought, you can request a carer's plan via social services.  In our area a charitable agency is contracted to do it.  That cd also help.  I wish you all the luck in the world.

"A play therapist even told me it was my fault he has autism and that has stuck with me ever since."

....what the hell? Some therapist. Autism is something you're born with, not 'given'. Its not your fault. That moron needs serious retraining. If anything, keeping him away from others as a result of your instincts/depression might have helped him. If he doesn't like people, he probably thrived under the attention, as opposed to being forced to 'bond' with people which would only stress him out more.

Any idea why he acts out at his sister in particular? I've always been increadibly hostile towards mine because intentionally or not, shes -always- the one to do the things I hate just to get a rise out of me and make me lose my temper. By targeting the things that set him off, no matter how small, you can start putting rules in place, e.g. if she does something that annoys him, rather than lashing out, he yells and goes to his room while you deal with it. Avoids the conflict, gives him time to cool off and lets you explain to your daughter why she shouldn't act a certain way towards him. And trust me, 4 year olds are smart enough to know how to push someones buttons to get attention. I have ten cousins, 8 of which I've had to endure when they were 4, and they're more intelligent and aware than people give them credit for.

Good luck.

thank you for your kind reply ive found 2 new numbers im going to call on monday and basically beg for help!!! i love my son more than anything hes my first born and he means the world to me as much as my other 2 babies do i just hate feeling this way towards him a mum shouldnt be scared of her child but i am and its driving me insane. Im scared one day i will lose my temper and really shout at him and take all my frustration out on him which i know isnt fair and its not his fault thats why i just cry all day everyday as its better than losing my temper.we arent asking for the world just somewhere or someone to turn to for help. i blame myself for our son having autism as i had severe post natal deppression with him and i just wanted to be left alone with him i didnt want anyone near me or my son. A play therapist even told me it was my fault he has autism and that has stuck with me ever since. i know on the surface its not my fault but deep down i do blame myself and think "what if i didnt have post natal depression" again so sorry to unload on here i just have no one else to talk to xx

im really sorry to hear of your sutuation it must be really bloody stressful and disheartening for you, it is NOT selfish, you are quite rightly very stressed and at your wits end

if ANY person says 'your doing fine' you say 'NO we are not, i am making this clear, we are NOT doing fine and i am putting the respoinsiblity of anything that happens right here at your door, because i have made this very clear, we need help, now what are you going to do about that?'

now thatt may be a bit agressive for you, i dont know ,but if i was in your poisition i would be making it very clear whats needed and whos responsible for it to happen and whos responsible when it doesnt

as for cutbacks, thats a sad truth, its happening to every part of our lives and its us normal people who have to suffer all the cr*p that comes along withthat, lackof financial support, emotional support EVEN from the authorites who are SUPPOSED to do just that

you need to push for help from the authorites, it will probaly be quite a fight with them, and al ot of effort and might not seem worth it but if you feel you need it, fight for it

they will do everything they can to make sure they do as little work as possible but anything would be progress, and if you get one small thing, you can get more

dont give up, you deserve help and have all our support here