lsw146

Thanks For that Caroline, that is the way I feel. She was telling her teacher recently that the clock had stopped in class at a certain time, on a certain date a few weeks before the christmas break (this was a couple of weeks into thenew term) and her teacher said, presumably jokingly, "I didn't know you had OCD ..." she replied "No I am autistic". I felt for her in having the courage to speak about it so plainly (although being on the spectrum helps her plain talk) but also felt that these and other remarks have been made in the past because, although we had major dealings with school in year 7 when she was freaking out, wetting herself and beginning to self harm, no diagnosis means no passing on of information. We have told her that the doctors can't agree about her difficulties but that she seems much happier on her meds and using techniques to cope with social and anxiety issues that work for autism. The last time we tried to reduce the meds we waited a couple of weeks and I commented that she was doing really well (although I had noticed her movement becoming stiff and her voice pattern changing I thought positive reinforcement would help). Her response was to say that her brain didn't feel right and was getting foggy so she was going to go back to taking her tablet every night. She is old enough to make a choice, unless clinically or for her own protection we have to do it for her, but if she could say I am this way because... I am sure it would help.

I understand the waves of emotion involved. Trying to get a diagnosis and undersand what is going on is a real energy drainer, let alone then trying to explain it all to others, expecially siblings. BUT the fact that you are on this forum means you will always have someone who will understand.

It is hard to help you other children understand why there are differneces. We tell our younger daughter it is okay that she forgets to handle our eldest with kid gloves and that we understand it is hard for her when her sister screams at her for looking at her or when she tries to be loving and give her a hug. We remind her that her sister doesn't always know that she is responding agressively and that she isn't trying to hurt her feelings (although sometimes sisters are just SISTERS ) we tried to exlain that her siters brain doesn't work in the same way as hers and that what might be very obvious to her needs explaining to her sister and sometimes it may feel that she gets all the attention but we love them both and are trying to keep a happy calm household. I can only hope that making sure she knows she can talk about how shes feeling and our explanations make her feel better about it all. Good luck with it all.

Hi All, haven't posted for ages but have been prompted by the doctor asking for a medication review for my daughter. she will have been taking riperidone for 3 years in March in varying doses (now only 0.5mg daily). She was discharged from psychiatry 6 months after they first precribed with a letter to the GP saying she was taking it for Panic attacks and anxiety and that as she got older she wouldn't need it. We did try to get a diagnosis of PDD-NOS as she didn't meet the criteria for aspergers (not that she was ever officially assessed).Psychiatry agreed that she had afunny turn of phrase and anxiety, psychology agreed that her developed was very disorganised. at the moment she is doing really well; now a high achiever at school (where was she drasticaly underachieved), making small social groups and considering she turns 15 this year coping well with teenage life. She asks loads of questions about why people do an say things and we use social stories and visualisation all the time. So if all is well and she is on the meds why would we needa diagnosis? well when she isn't coping the autistic behavious slide back in, expecially the agression, paranoia and obsessive behaviours. When we try to reduce the meds this happens and when she is highy stressed through school work it also happens. I worry that she will get older , go to college and get a job but become isolated because she can't explain to anyone why she is the way she is. My family think a diagnosis would hinder her future but I think it could help her if she got into trouble because her behaviour became unacceptable out in the big world. I don't know if I am explaining myself very well. I may just be feeling down because eshe has had a couple of challenging weeks. Teenagers and autism seems tricky because I am not always certain which behaviours she can and can't control?! Anyway any help, advise orjust achat with someone else who kid takes meds but doesn't have a diagnosis would be great.

I can't quite believe it's been nearly 2years since my last post so I thought I would say hello again. My daughter B is now in year 9, she never did recieve a diagnosis, although the psych sort of agreed we could tell school it was autism/anxiety. She has been on Respidral for the 2 years now and it has changed all our lives. We were told as she got more confident she wouldn't need it but every time we reduce the dose the extreme behaviours return. so we have decided that we know what we know and the docs can believe what they want. Her meds have given her the freedom she needed and we are given enough in her prescription to increase and decrease the dose depending on how she feels. Sometimes when we have reduced the dose she has asked herself to increase it and told us how much better she feels! we have even got to the point of being able to have the builders in for major renovations and the only real change from her was baby talking and not being able to stand still!! My younger daughter joins her at High School in September and I gave up work 18 months ago (after a bereavement) so all in all life is going so much better than at my last post in 2006. Jo

Oh how familiar this all sounds! We have had years of testing the waters of days out and holidays only to come home drained and upset. Our 12 year daughter started respiridone a few weeks ago with great results so as this bank holiday approached we really thought a family outing would go well. We had managed a short trip to North Wales without problem and she was even playing with rocks and twigs and using great imagination. Unfortunately I had been lulled into a false sense a security. This week at school is not going to be routine because of sports events etc and i hadn't realised just how anxious the extra planning was making her - well not until the third meltdown on Saturday and by the time Monday came all plans to go out dissappeared. We have the same thing of her really wanting to go out and being very bored but if we plan something and it doesn't happen just right the sreaming follows and if we don't plane anything she asks every five minutes about what is going to happen and still has a meltdown because she can't plan it! Still I love her to bits and she is getting better at taking herself off to her room when she wants to scream!?

Hi all haven't posted for a while but wanted to let you know that the psychiatrist was very careful in listening and questioning us and B was just "odd" (sorry can't think how else to desrcribe her mood that day) enough for him to agree that there is definatley a difference fromt he norm with her development. He wouldn't offer a diagnosis but said if they were going to give one it would be PDD-NOS. However after listening to a recording of one of her meltdowns (her dad played when I took her back to the car) he agreed that respidral would be a good option and when her anxiety is reduced she can have further therapy. So we are 2 months in and the behaviour change has been pretty dramatic. She is quite Dopey on a morning but she sleepdm, eats better and is much less reactive. It certainly hasn't slowed her down she is in the middle of rehearsals for a Ballet and dancing for hours a day. We still have the odd moment but then puberty has hit as well. Westie I have look at the Avoidance checklist many times over the past few years but I htink our psycholigist had a hard enough time accepting any form of PDD without helping us discover a more obscure part of the spectrum. Now we have recieved an acknowledgement of B's difficulties I will be bringing up diagnosis again because I feel school can only help best when we all know what we are dealing with. Thanks

A similar thing at my daughter's school was marbles in jar where the class culd earn fun minutes. If B had had a good week but others had been disruptive and the didn't earn there fun minutes in was disastrous. At her senior school the get certificates for good work but B had got quite a lot so the teachers started totell her thatshe WOULD have got one but she had one last week. It seems like B has to try extra hard to earn a reward. She is very passive in school but those children don't seem to care get rewards for showing the slightest bit of enthusiasm. B can't understand how a child who is report can get a certificate. I have tried to explain that it is about the ammount of effort they put in but in reality just going to school is huge effort for her at the moment so she doesn't see thsi as fair. I was getting really tired of star charts, marbles in jars, reward charts they all meant failure for B because she would get so stressed at the expectation to 'conform' that she would have even more meltdowns.

Thanks curra B was asked what she would like and she said nothing will help, turned away and didn't look up again for the whole session. Like you say it is definately a positive move. I have read about the side effects and we are very reluctant as well but life is so disjointed and erratic we feel we need to give it a try.

We have days of exaggerated emotion after a fire drill and last week it was a bomb scare at school! I suppose it is really in the way they help the child down from their anxiety rather than letting it build up until they are home. We had a simliar thing with an accident in science resulting in a burned finger. B was left with it under the tap, not sure what to do next and came out of school 20 minutes late very distressed. If they had managed diferently the very small burn wouldn't have had to be bandaged all week and become a matter of obsession!

Appointment was okay. He sat and listened to us all very quietly with just a few questions. It was really ahrd being made to speak in front of our daughter and I kept suggesting she went out for a bit but he didn't oush this. He sumarised by saying that B has many ASD traits but can make eye contact and conversation so that wouldn't be the diagnosis. IF we were to get one it woudl be Pervasive Devlopmetal Disorder - Not Otherwise Specified: he only said this because I asked him if it was possible! He siad he would talk to the team as he was reluctant to prescribe becasue it wouldn't remove the core symptoms. We said the core wasn't the problem it was the add ons in the form of screaming and anxiety and aggression that we wanted to help her with. When I left with my daughter my husband played back a voice recording of a meltdown (we managed to get one on his phone) and he said he would be in touch next weekl about medication and other interventions! So we are trying not to hold our breath. Jo

Jenrose this all sounds so familiar. But we keep battling away. i have also posted on the "myths surrounding ..." link about the discussion we had with the psychiatrist yesterday. Apparently our daughter has many of the traits but had a conversation with him and made eye contact! We have the same feeeligns that one to one with an adult is fine but in a larger group or peer group her communicaiton is very differrent, stilted and very mimicing of others. PLUS we have been teaching her soical skills for years now and hwo important eye contact is. Of course she is clever enough to know that people make eye contact when talking and she can SOMETIMES do this but it is hard work.

I know how hard it must be hanging out for a diagnosis. We have been trying for 6-8 years and they are still very reluctant in the CAMHS team. I think they worry that we will wnat a statement or 1 to 1 support but we are just looking for an ackowledgment of her difficulties so that we can give her the best. It would also give us more confidence when out and about and having a difficult time because we would be able to say without doubt that we need help because..... rather than having everyone watch us and her and make evertything worse. Good Luck with your struggle

Well we returned from the psychiatrist yesterday who said B has lots of 'symptoms' of autism but (after talking with us for an hour) she can make eye contact and communicate well so he din't think he could give a diagnosis of ASD or AS. He said as her social problems were mainly when she was interacting in groups or the 'wider society' she did have the Triad of impairments. I asked about Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) and he said if they were going to give a diganosis this would probably be the one but he needs to talk to the team. After playing back a meltdown (I had taken her out at his point Dad finished the chat) that we had managed to record on the phone he said he would be in touch about respiridone and whatever other therapies they could think of to help. But I still don't think we will get a diagnosis.

I see where you are coming from on the feeling controlled and being controlled. Today we did not try to make our daughter conform to NT rules and as a result we began to feel like she was controlling us. She was upset that she couldn't have everything she wanted in the coffee shop and began to make her communication with us agressive and abrupt. To others this looked like a stroppy child having a tantrum but I knew it was because she had an idea in her mind of what she was going to eat and drink and when I said no she couldn't sort a new idea quickly enough. Once I had made the decision for/with her she calmed right down. It was great example of how we can share our space without one or the other dictating the pace. She went off down the road singing , dancing and talking very loudly whilst cuddling her cushion. Normally on a busy Saturday we would call her back and quieten her down (meltdown ensuing) but today we let her be HER with a much happier outcome for all. As paretnt we will always have time when we have to say NO (areas of safety etc.) but I (on a good day) am slowly learning to use NO when it really matters and not to put my NT boundaries on her unless absolutely necessary.

There are just no explanations for such a tragedy. I wish the family strength and send my sympathies.

Our daughter can be violent and aggressive sometimes it is attention seeking just like any other child who is annoyed but sometimes it is certainly not ot get an response from us it is just the ways she copes and sees the world. It makes life really hard for all of the family when these uncontrolled meltdowns happen and we do still walk away or send her for time out but she has never learnt not to behave this way because of the wya we respond. Our younger daughter pushes everyones buttons and tries it on but is slowly learning the boundaries to 'socially acceptable' behaviour. Timelord you sound like you have had a really hard time with your son and whilst I can try to empathise with what you have been through I can't truley know. It seems to me that like all of us you have tried you best for your family and that is all we can do.

Unbelievable these professional get so caught up with their own self importance (and before Ioffend to many people I work for a community paeds team and there are brilliant people put there as well) and forget they are dealing with lives and families. We have also had the "you explain too much" thrust at us and now I am not allowed to praise the good behaviour in case in draws too much attention too the bad behaviour Good luck with your fight and follow your instincts

The passive child is well written about by Tony Attwood and others and is definatley the reason it has taken us 6 years to get a referral to psychiatry. Now she is in senior school some of the more obvious square oeg in round hole features are becoming apparent and I will keep appearing at school and my GP's until the see the full picture. When you think about hte ammount of energy that must be involved in passing as NT in school and lessons it is not surprising the are exhauste, hyper or uncontrollable at home. I do sort of wish it was the other way around though?!

Viper I know how you are feeling I have always been the one people turned to for help and advice and I feel useless now I am in such a state. I keep questioning why I can't just get on with it BUT if I step outside of my self and think of the advice I would give someone else it would be to say that it is an illness just as real as pneumonia or a broken leg. If you had diabetes youo wouldn't thnik 'hey I can cope without my insulin" you would know that it was there to correct and inbalance. Depression is an inbalance and you have to find out the right way to get your body and mind balanced again. This may be meds or counselling or something else but you ahve made the first step by admitting the problem now you need to take the next and ask for professional help. do this in your own time and find out what works best for you. Jo

bottle

MORNINGS AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAARGH BEDTIMES AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH MEALTIMES AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH ALthough on a positive note I didn't have to dress my 11 year old this morning and she ate a pice of dry toast?!

We have a psychiatry appointment tomorrow and I am feeling quite nervous. Medication seems so drastic but then so is B's behaviour and mood. Still worrid about side effects but i suppose we willl talk them through if the psych thinks meds are appropriate

Thanks everyone. Decided to come straight to my Mums after the school run and see my little nephew just had a great play with him and trying not to thnnk to hard. GP signed me off without arguement. She asked how Iwas and I said a wreck! She asked how long I wanted and what I wanted on my sick note. The last time I sawthe same Doc she was really dismissive so it was nice that she was running overr an hour late but still took time to listen. We have first psychiatry appointment tomorrow so wishme Luck ?!

I have been treating my depression since before xmas with some relief but I kne wmy motivation and concentration were getting worse. I kept putting off going back to my GP even though they suggested time off work. The idea maade me feel so guilty I felt worse. Then yesterday I crashed my car (only a minor, slow bump thank goodness) and realised I had to stop and take stock. Please get help and keep talking!