Keep bursting into tears whenever I tell anyone about ds's autism.

[Fleurlechaunte]

As soon as I say it to anyone, doctor, family member etc I start crying.

He was diagnosed with HFA in October and I was really happy to get the diagnosis so we could get the help he needs.

It has been a couple of months obviously and I seem to be feeling more upset about it than less, which I think is a bit strange. I have started crying now just writing about it.

I keep thinking I know how to deal with it and then something happens that just seems to cut me off at the knees. Really, really bad day today. He was apparently aggressive to a teacher at school (turns out he was lying on the floor kicking her chair) and I was called in. During the course of the conversation when I said "he finds it difficult to confide in me when things are going wrong for him at school" she said "Well we will are going to have to "train" him out of that then". "Train" him? he is not a f*rking alsation!.

He is currently going crazy and smashing up his bedroom and I just havent got the energy to deal with it. I feel utterly lost and at the end of my tether.

Poor you Fleur. I know what you are going through. They say grief goes through various stages (sorrow, anger, bargaining....etc) until you reach acceptance. I think I moved onto angry quite quickly to avoid sad. If it's any help, my DSD is HFA and now - at 13 - is as close to living a "normal" life as is possible. She is at a mainstream school, with no one to one help, studying for SATs etc. My DS is also autistic, and I think aggression is obviously more of a problem with boys (all that testosterone, it's not just autistic boys, the nf boys in my daughters class are always in trouble for aggression). Is there anything he absoluely loves (computer, TV?) that you can deprive him of for an evening if he is aggressive? I think with boys, it has to be actions not words - or at least that's how it was for my boy. Anyway, I hope things look up very soon, and perhaps a fag and a drink would help as it's now nearly bedtime!

Poor you.

I think your reaction is perfectly normal and is a sort of delayed grieving process. It does get better to the extent that a few years down the line I don't even think about it but every now and again I have a really 'depressed' day and feel very weepy about it all.

Don't feel that you HAVE to tell everybody about your child's autism. I am very very selective in whom I confide in as peoples' reactions can be very variable. I have developed a good line in fudging.

The teacher sounds like a mini Hitler. Why don't you go and join him in 'smashing' up his bedroom - ie, throwing the odd soft thing (cushion) around to show that you can vent frustration but in a less destructive way. He might be so amazed to see you chucking a pillow onto the bed he might stop. I have had 'tantrums' in front of mine and he was so stunned he shut up!

Lots of virtual hugs. Someone will be on soon with more sense and help than me but didn't want you to go unanswered.

Thanks. He has been deprived of computer today, which has in turn led to this huge tantrum he had a little while ago. It is effective though. Also a small reward at the end of each week when it has gone well. I have some strategies in place but then a day like this comes a long and I feel that I am just getting it all wrong and being no help to ds at all.

I think it is only just beginning to hit me what it is all going to mean both for ds and the rest of us as a family. I had planned on going back to work in a couple of years but now I don't see how that can be possible. I could never leave him with a child minder or in a holiday club and this is obviously going to place a lot of restrictions on me being able to work and what I do. So many things to consider now. I spend all my time when he kicks off like this trying to think if it something I did, or something I was inconsistent with or was it when I shouted last week etc etc etc and on and on.

I don't tell many people, it is ds's business after all. When he is old enough he can decide who knows. Only people I need to tell to smooth things for him.

Thanks for your replies though. Sometimes I just feel so alone with it. H is not around much and no family nearby. I am fine most of the time but just these bloody waterworks just lately.

Fleur, go easy on yourself, your reaction is totally normal and understandable. I think at your stage it must be difficult to envision the future, but reading about others who have teenage children with ASD gave me so much hope that if ds1 did turn out to be on the spectrum, life might be different in some ways but we'd cope. I have a H who works away much of the week, and family 400 miles away, so I understand you feeling alone with it. It's awful when you're worried but you still have to get on with things, you can't take the time to think it all through.

I have one particularly understanding friend who will just listen when I need to talk through my worries - do you have anyone like that you can talk to? Could you join a local support group maybe?

fleur I hope you are feeling a wee bit better, please try not to be hard on yourself (easier said than done) - I do think when you feel as you do it is a sign that you could do with some escape (I know it might not be possible) - couple of hours away from your day, watching a film, having a long bath... planning a lunch out with some friends? but only thinking about what you are doing at that moment, not about the future.

I don't think the teacher's comment is helpful or constructive - do you have a support worker ? someone that can maybe hear how you are doing?- my ds's salt co-ordinates support for me for multi disciplinary team - she has suggested getting in touch with a social worker to arrange respite, is that possible for you?

I am not ready to try respite yet and my ds is doing okay atm (no dx yet asd traits and language disorder). I know when my ds is having a bad time at school/home that I am having a bad time too, it gets me down.

I just wanted to respond, it is tough when you feel alone.

Sorry to hear it's been so tough, fleur. Not surprised you are all emotional. Hope things look up soon. I've worked with children with asd and they really do develop and change over time, even if their asd is severe. I guess the one day at a time thing is important- things may be so so different in 2 years. I really hope things will get easier for your boy and you.

Thanks so much for your kind responses. Tears in my eyes reading them, I am turning into a right jelly.

Last night he told me he had a pain so I called out the doctor who prescibed antibiotics for an oncoming ear infection he has woken up with a temperature and an upset tummy so he is obviously unwell and this explains his "aggressive" behaviour yesterday. I should have known. He is such a gentle little boy.

I hate the way behaviours are described as aggressive, when they can be looked at another way. Apparently he kicked a teacher. I asked her "Did he run up to you and kick you then?" because I was so shocked and it turns out he was actually lying on the floor kicking her chair - not acceptable at all I know but they way it was first said sounded so much worse than after the explanation. She also said "it will be so much worse when he is bigger and stronger" like he is some out of control delinquent. This is the second "aggressive" incident in over a year, it is clearly a very unusual event. Last time it happened he had flu the next morning and was off for 10 days.

I know he is going to be fine. He is fine now. I personally have no concerns whatsoever with DS's behaviour. He fits in perfectly to our family and is loved and happy here. Just school where there is problems, which I know is to be expected.

Thanks you again for your messages. Feeling much more positive this morning.

I'm glad you feel more positive this morning Fleur. Dealing with all that asd can throw at us can be difficult, at times and I definitely flit between being ok and then tearful - it doesn't take much for the water works to start!

I hope that your school is a little more supportive.

They usually are very supportive. His SENCO is amazing. She arrived and the first thing she said was "well, do we know what triggered this off?". Honestly I could have kissed her. Someone acknowledging that this is unusual behaviour for ds and that there was a reason for it beyond his "Autism".

Have kept him home today because he is unwell and made cakes and watched a dvd. He is so happy at home. Wish I could keep him here all the time but I know that is not really any good for him in the long run. Thanks again. Feeling loads better today. Long may it last.

If only we had the right brain connections to be able to work out when we're in pain or ill, and tell people. We can do one, or the other, but not both. So youngsters have a tantrum because they can't say what's wrong and are still trying to cope with all the social interaction at school. It's like you being ill with flu and expected to run a marathon.

Finding out what the triggers are, and finding some way to let others know - those are important life skills. Even I don't get it right 100% of the time and I've had 40+ years to learn it. But, being female, I don't get aggressive - I just shut down and run away/hide etc. For me, and for many others, pictures or objects help more than words. If we can't explain why we're feeling unspeakable, (in both senses of the word!), then can we get something that explains it? Can we draw it? Can we know there's a safe corner to be in and something to wrap ourselves in?

The temptation in any classroom is to make eye contact, talk to them etc. It actually makes it worse, because it's the sensory input that's causing the overload problem. The more eye contact and noise, the worse it gets. They need to learn to minimise it all if they're not already doing so.

Fluer- sending you hugs, dd1 got her dx (aspergers) 2 months ago, we expected a dx of AS but it was still a shock for us at the time. Dh dosn't realy talk about the dd's sn so i feel like i have to cope with alot on my own.
I kept dd1 home today, dd2 was ill lastnight and dd1 got a bit jelous and upset, this morning she said she felt ill, even though i know she was ok i kept her home and all 3 of us have had a lovely day at home, i wish i could keep them home all the time too.

amber thats such a great explanation. I knew this about ds but couldn't put it into words. I still sometimes forget though and feel at a loss but 9 and a half times out of 10 it will come to me afterwards or I will find out something that happened in front of him or to him and realise that is why he had his meltdown. There is always a trigger.

Sometimes I go through a list with him or what it may have been and he will seize on the thing that it was and seem so relieved that I guessed it. He just does not ever think to tell me and proably as you say maybe does not even know himself till I say it. I always have to go to him and say "was it this?". I am going to try so hard to not forget about this from now on when he loses it.

Marne that is what H is like. Was in total denial at first and even now just leaves it all to me really, it is always me who deals with the school stuff and did all the Developmental Paediatricians appointments etc. Sometimes when he is frustrated he still says "There is nothing wrong with him, he is just naughty" and it drives me nuts.

I wasn't shocked by the diagnosis, I was so glad we had it and things could move on. It just seems to have crept on me what it really means now. I wouldnt change a thing about ds though.

Not autism here, but these feelings are common to us all I think. I still find it difficult to talk about DSs condition without being a bit teary. That said, up till around 2 months ago I would regularly dissolve into very messy crying fits - to the point where I wouldn't wear any make up to DSs appointments!

I still get the odd lump in my throat and every now and again something silly and unexpected will give me a kick in the face and bring it all rushing back, but I am MUCH better now. I even manage to laugh at some appointments .

What you feel now is completely normal but it WILL GET BETTER! x

Hi Fleur,
Just wanted to say welcome to the SN board . Grieving process entirely normal, I'm afraid.
Sorry your DH isn't very supportive but glad your SENCO is good, even if your teacher isn't!
Brio.