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thank you. Reading you stories absolutely terrifies me, but I am grateful to you for sharing them with me. It is giving me the strength to keep fighting for help for her. I am so afraid that this is the future she is headed toward. My brother wasn't diagnosed until adult after a suicide attempt and she is so like him in many of her ways. We never give in to her and we always insist on discussing what caused her to become so upset and how she could have delt with things differently. To some degree this is working because her episodes have gone from several 40min outbursts where she throws her body uncontrollably arching her back and screaming, to a few minuites to take herself off and gather her thoughts and emotions before coming back to talk. This still happens several times a day but we can have several days at a time with no major incidents. The problem is in public places where she can't have that few miniutes. I can't let her go wandering off and I don't drive so my only option is to make her walk to somewhere where she can calm down. But that is esier said than done in most cases as by the time we get somewhere safe she is hysterical, hitting herself and grabbing handfuls of her hair, and then she is withdrawn for hours afterwards. I just wondered if anyone else had found a way of coping with this. Sorry if I didn't make anything clear, I have a lot on my mind.

thx so much. Its really nice to hear from someone who can 'understand' her feeling rather than just 'explain' them. I am going to go back to GP and find out where we go from there. thx again.

She is very reliant on routine and can handle having what we call 'flexible' time where we do different things as long as the basic structure of her week remains unchanged. We home school but all her activities stop during school hols. This is never an easy time and I usually find the 1st week back is often worse than the break itself. All the BHols over easter ment we ended up with a 4 week easter break, which was tourturous. Followed by a 3 week term, then a week off, now we are back for 6wks and then will be off for 6. I stupidly arranged to go swimming with friends after her usual monday morning on the 1st day back. She had been asking to go swimming for a while so I thought she would be pleased. She broke down,and went completely nuts. Asking why I arranged to go swimming, 'we go to Nannys on monday afternoon. You said we were going back to the plan on tomorrow, why did you change it, I dont want to go. I want to go to Nannys' It left her so upset she cried the whole evening. We had to cancel swimming and go to Nans for lunch then go to friends house to play. This was ok, friend came back to sleepover which thinking about it now maybe wasn't the best idea. All seemed well untill going home from next days activity. She just cried and cried and cried. Interspersed with tantrums and hitting herself and telling me she loves me while crying and wanting to hug me. She did used to hit and headbutt me and her sister when she was younger and she really did hurt me. We have worked very hard on getting her not to. It was only ever imediate family. She has always hit herself but I used to take the brunt. Now she is only hitting herself but will occasionally throw her entire bodywight into me with her shoulder, but we are still working on that. I am confident that will stop as its getting better, but the self hitting is getting worse. She has been telling us for years that she wants to die when she gets low and I am really worring that this is the sign of things to come. I am glad to hear that you can understand her feelings. I really do try to see where she is coming from but it is really hard sometimes when you dont ever expierience these intense feelings youself.

Hi DD is just 7. All of her strange stressy behaviours have got much worse recently due to her routine being seriously disterbed. I am really worried about her hitting herself and pulling her own hair. She has been doing this when she gets really upset for as long as I can remember but just recently it seems to be getting much more violent. Distraction doesn't work. Ignoring it untill she works herself into a frenzy and falls in into a sobbing ball is the quickest way to get it to stop. She was doing it to herself coming out of the supermarket the other day and the looks people were giving me, you'd have thought it was me hitting her. I know if I step in I will make it worse, but I don't want her to get into a habit where she will end up hurting herself. Does anyone have any expierence of this? Has it got worse as your child got older. Did you find they ever hurt themselves or do they manage to keep it under control? Have you found a way to stop or change this behavour? i don't want to stop her from working out her feelings, I just don't want her to hurt herself. thx

Hi Jo I just wanted to say thank you to yourself and your daughter. My dd is just 7 and textbook aspergers but no one wants to diagnose before 7 because they dont want to 'Label' her. I home school and have good and bad days, I sometimes wonder if I should bother going through all the rigmorol of fighting to get a diagnosis. The recent late easter/bank hols/then very short term followed by another holiday has thrown her routine completely out and I am finding the older she is getting the more reliant she is becoming on things like routine, she seems to have spent so much time crying and screaming lately and is always so anxious about EVERYTHING. I feel I'm fighting a constant battle to keep her calm and stop her melting into hysteria about every little thing. Anyway I had a really bad day yesterday and turned online to see if I could find someone who has a 'girl' like mine. I found your post and it has really given me the strength to fight on. Reading about the difference in your daughter before and after diagnosis has confirmed to me that she does need a diagnosis for herself as much as anyone else, especially as now she is getting older she is realising that she is 'different' and that is just another thing for her to agonise over. Thank you