florrie

I'm very sorry to hear this very sad new news. Phasmid was someone very knowlegeable and supportive on the forum, and will be missed.

I have had something similar happen to me and although I was dx by Professor Uta Frith, and have an autistic son more obviously disabled who I could not cope with, it still has not been accepted by my medical profession, I've got it temporarily and the whole rigmarole made me feel even iller as I had to go a psychiatrist and GP and who were horrendous, so i don't even have that to fall back on. MY ex partner fought my corner on this and that is the reason I got it, but without that I would not, and ilive in fear of what will happen when he no longer can help, as he resents helping Iunderstand the feeling of suicidal etc, that is what i Had in the first place and it wasn't dx as I didn't look depressed but that is a feature of asd which is why I felt Ihad to get the asd dx, although I regret it now, cos now I think they just think I'm even more of a hypochondriac, I don't undnerstand why this is done to people, it makes any problems Ihad worse and fear and phobias, I guess they presume cos we look normal we are the people that are falsely claiming while living it up as someone earlier quooted about people claiming it for depression that are living it up at the clubs everynight, maybe these people were depressed at the time of claiming but got better, I doubt they would keep it. I don't know maybe people really are that manipulative but because I'm not I find it hard to understand why people would be. My ex partner said you should appeal the decision, but I wouldn't know how to go about that! I certainly wouldn't be able to appear in person, I would rather die than do that, so I understand how you feel, Ihope you can get someone on your side

I wonder if this craving for salt is a sodium deficiecy, Ihad a hair mineral test several years ago to test for heavy metals and it came back severely deficient dangerous in fact in sodium. Ihad never eaten salt believing it to be unhealthy. I started eating a bit of good quality sea salt not table salt which is not natural salt. But I only got real results when I started using a lot of it, improvement in health and slight improvement in cognition. I had other deficiencies however such as magnesium and sulfur. Some people on the autistic spectrum are sometimes found to be deficient and also sensitive to certain food stuffs, also malabsorbtion probs too which I also have, which is why I need a lot to correct the deficiency. I don't think it is completely corrected yet though

All I knowis that I thought it was an autistic spectrum disorder,until Imet Professor Uta Frith who referred to it as an Autism Spectrum Disorder, I then thought maybe autism spectrum is the correct term but I guess it doesn't matter

Hi there, I've been aware of this for some time, I still haven't had mine removed though, too expensive, I certainly think it is better when having your children's teeth done not to have the amalgam ones. My children have not got amalgam ones. I know in some other countries in europe particularly scandinavia it was illegal to put amalgam in the fillings many years ago when I first heard about it. I've heard of cases of people that improved from illnesses and long term bi polar when they had them removed. A friend of mine not autistic, csays she had improved cognitition after she had them removed

In reply to another post this isn't exactly about risperdal butrugs in general, these drugs are tested on neurotypical people not autistic people and my experience and belief is that these drugs can have an aytypical reaction on people with autism. The NAShas stated this too I was given seroxat myself and although it worked at first after a few weeks it gradually stopped working as your body gets used to them and then I thought there was no point continuing , I tried to come off them but it was a nightmare as any problems I'd had were magnified many times the distress I felt, and they wanted to higher the dose, so we did that instead and then things got really bad, they made any problems ihad a million times worse when I tried to come off them resulting insuicide attempts twice, I eentually realised it was the drugs, it took me months to come off them despite being advised not too, very very slowly and after when I was off them I was certain how dangerous these drugs can be and I believe the ovedrdose I did where i went inot a coma made my cognitive and processing difficulties worse. Please proceed with drugs for you child with caution.

Hi Js Mum, sounds like it is going really well, your child is obviously very sensitive to be getting headaches with withdrawal but keep it up as it will be worth it in the end. Mumble, chocolate does contain caffeine not a great deal compared to coffee but it also contains high amount of a stimulant called theobromine which is similar to caffeine and apparently can actually kill dogs which is why it is removed from chocolate products for dogs.

Hi again, there are several varieties of natural cola made from fruit juices and natural cola extract, whole earth is one. I guess there may still be caffeine in it though but at least not bucketloads of sugar. I also just remembered there is less caffeine in cadbury as there is not much natural chocolate in it but chocolate flavouring, than green and blacks although cadbury is made with hydrogenated fat (plastic) rather than natural cocoa butter. Sorry to be not much help then as it is caffeine you want help with, I don't know of any supplements although I'm sure there may be something to help withdrawal but just to gradually decrease those products. If I find out anything I'll post back here.

Oh That is a shame about green and blacks, I can't really tell the difference, it is all chocolate could he tell the difference even if you took the wrapper off cos sometimes cos they don't like change and see it is a different wrapper they won't want it, if you tell them it is healthier it is the kiss of death, but also possible that he just has extra sensory stuff with taste so just wants the familiarilty of what he likes. The cola stuff he is likely to notice then too, but I'll search it out anyway and post later. If you try cutting it down instead or try introducing green and blcks ocasionally, butnot make a big deal of it, or you could just take it all away, and say that is that, which would be the most difficult but would work in a few days if youjust ride with the tantrums and not give in.

Hi There What kind of caffeine type products is your child addicted too because if it is things like coca cola, you can definitely get a replacement for that in health shop that is caffeine and sugar free iem ade with fruit replacements and tastes just like coke, well it does to me anyway actually it tastes better. Best do it gently too and not make a big deal about it just switch it but don't say because otherwise that what is more likely to cause a problem. I can find the name of the coca cola product and list of ingredients if you like but I'll need to search it out, as we don't drink any of this stuff at all now

I've only just seen this as I don't come on here very often now. I feel physically sick reading this and I so much want to help you and I don't know how Please try and stay strong, because they will try and use that against you too, This is child abuse, you need to demonstrate that they are doing severe mental harm to your child, but they twist it and lie I know I've been through it but nothing like as bad as this keep a record of all contacts with people and what they say because they will deny it, can you tape the conversation with the doctor, I know it is not formally allowed in court but it is something you may be able to use in your defense at some point with newspapers and you can take action against him. Is it not possible to get away from the situation you are in by moving? You are allowed to home educate it is perfectly legal, contact education otherwise. I know loads of people who home educate I really cannot understand why there is no one who can help this situation is this the state of how things have become in this country. I'm so sorry

Yeah I agree there are many causes Liz , Aspie stuff is genetic in my famil but one of my chldren had severe reaction to MMR the year it came out. Thanks Stella, I think you did the right thing

Just want to say that the above post as boffin is mine, florrie my computer isn't working and boffin who is onholiday has let me go on his but ofcourse his name was the one logged in when I placed the response to avoid any confusion. Just because someone has a genetic predisposition to AS does not make them immune tohaving a bad reaction to MMR and just because many AS people did not have a bad reaction to MMR does not mean that it is completely safe for everyone else. It seems that anyone who did not have a bad reaction decides categorically there is no link and thereforeit is safe ignoring all those that have had bad reactions. I don't care about wakefield or the research this is actually personal experience.

I can't tick the box because it doesn't give me the option of more than one. I think it can sometimes be a combination of things including genetic Although there is a genetic factor in my family, my son who is the most disabled also had birth probs cord round neck and dent in head where they tried to stop him being bor I didn't question it at the time due to not realising why this would be a problem. He then went into a coma after his MMR booster and develped additoinal probs he didn't lose speech as some did, as he didn't have any, but he has had physical health probs and bowel probs since, and additional difficulties to the AS that me and nephews have. I also think my sister has signs too but undx MY sister has health problems and her children also had birth problems lack of oxygen in the womb too long kind of thing. My father also had traits but it was his agression and mental illness that was the problem and after he died i found out he had been raped as a young child and now i wonder if that was a cause for his psycholoigcal problems. But he still had the AS traits in addition but they aren't what i see as the problem it is all such a jumble. The other thing we all have in common is the auditory processing problem found inpeople with autism although Donna williams says in her book THe Ju,bled Jigsaw severe trauma can also cause the brain to oganise information differently or to rewire differently which I thought was really interesting

Hi Becci, I've had something similar to this , it is not so bad now at the moment though when I was 14 it started, I used to think I was fat and then I'd think I was fine even though weight hadn't changed, or I suddenly noticed something looked fat, when I was 19 I was obssessed with cellulite and would squeeze my thigh so hard until I could see any sign of dimpling to confirm cellulite which would make me terrified, don't know why now, I have had life long fear and obssesion with it, but it is not always continuous, and it is better now, I guess this is some type of body dysmorphia. I also used to think I looked really beautiful one day and really ugly the next I'm not quite sure as I'm obssessed with healthy food too as it make your body look better and it made me feel better orignially so I became more restrictive. I often wonder if is part of sensory processing information processing problem, or whether it was just reaction to stress or a mixture of the two

Well my son went into a coma after his mmr jab and whilst I don't believe it caused his autism I bellieve he was made worse by it. I have heard of other people whose children totally regressed, some left in a vegetative state , after mmr jab including a friend of mine. If these people say this is what happened to their children I tend to believe them, if anyone says they don't think the mmr jab is linked to their child's autism I also tend to believe them, but do not tell me that my son's autism was not affected by the mmr jab becasue it was, and I did say "affected" not "caused". Andrew Wakefield at least was trying to look into what was causing these problems in children, how many members here have had gps who have tried to find out what is causing their children's problems, my gp did nothing to help us, there has no proper record kept of the fact he went into a coma after his mmr, so if records aren't accurate made how can they be reliable . In fact they have gone out of there way to be unhelpful and destructive We have had to fight for any recognition of his very significant difficulties having to go privately, It would have been a godsend to have had a doctor like Andrew Wakefield. All drugs are not 100% safe, just because they affect some people does not mean to say they affect everyone ie thalidomide caused disabilites in children, that was proved eventually after many years it did not cause disabilities in everyone. I am convinced that there is a link between mmr and some people's autism and I find it worrying to say the least that people are categorically saying it isn't, when in my son's case and others it is. I am convinced too that eventually this will be proved

I was asked to take part in a research study by them before but it wasn't about females so decined as I've done loads of others at ICN and IOP Please let us know how you get on and what it involves as I'd also be interested as I think this is an area that needs info. I thought baron Cohen believed it was a predominantly male condition

Hi Paula, yeah the advice given was very good and clear. Your reaction ie that they say you are overprotective is perfecty normal parental reaction to a child who is being harmed, and that you need to make that clear. I hope you can the evidence together to get this sorted.

That is a good idea to contact Angela Browning MP as her son has Asperger Syndrome and she has been proactive with trying to get better recognition and support for it.

OMG Paula this is so awful, I really do not know what to say, like clare said it could happen to anyone of us. I had a terrible time too with authorities and just backed away from the lot, took my son out of school and complained about lack of provison and bullying leading tohim having a breakdown, luckily they all ran a mile, noone ever chased me up abut sending him too school he went to an alternative school and I got fees paid by a charity, but he still did not get the education he needed, and still struggles a lot, as he has undx, but obviousl to me cerebral damage too, from birth. but it could have so easily gone the other way but Inever thought of that at the time, I was just angry that he wasn't given the support he needed. Ihad lies put on my medical record too after suicide attempt but it was too defend there own positions so I couldn't come back on them. I wonder if this is what is going on here too. I really hope someone can help you here, I'm genuinely frightened of these people and stay away from them as all they have ever done has made things worse rather than help. I really hope you get the answers you need to help with this situation and i cannot believe this kind of thing is allowed to happen. I hope someone will help you with this situation

Thanks very much for the advice, that has really helped. Because I have had a few bad experiences, I worry a lot.

I just claimed carer's allowance as I just found about it , for my son who has asd the thing is I signed it on his behalf explaining because he had autism and they sent it back saying he has to sign that he understands that I am claiming carers allowance for him. The thing is he has severe pragmatic difficulties and I don't feel he understands this, although his is physically capable of signing. I'm not sure what to do, if he signs it my worry is they may say his difficulties are not bad enough and he'll lose his dla this year when it comes up for renewal, on the other hand if I sign it they may want to do a home visit on him. He lives independently now too due to the breakdown I had when i lost all my benefits due to him becoming 16 and he ended up homeless, so that makes things more complicated. Had I known about the carers allowance years ago when he first got it I probably wouldn't have had a breakdown. I'm thinking of just not bothering to claim it as I can't make a decision, I've had this letter 2 weeks and have got send it back this week. Advice appreciated

WHOOPS actually I don't know how the above quote got there it looks a bit weird as it saying the same as my above message, so please ignore

Thanks for you message frangipani, how old is your son now,? I hope you get answers, when I had a breakdown the doctors struck me off register obviously at the time I didn't know what the problems, and there were other things going on at the same time, unfortunately the other doctors I've been too seem to be on the defensive for some reason, and seem to go out of their way to be obstructive and harmful, they get clearly irritated and rude if I express my concerns so I don't feel confident enough any more. I don't mind what they think of me but the fact that it has indirectly harmed my son I find very hard. Keep us informed on how you get on with this? I really wouldn't know myself which way to go about it, I think it is too late.

I really relate to this topic my son was born with corn round neck and dent in head where they tried to stop him being born, my mother was shocked at the time but i was young and naive and never questioned it even when he developed problems I 'd forgotten about it but now i wonder, he also went into a coma with mysterious virus after mmr, he definitely has braindamage in my opinion but what caused it for certain I don't know. I can't prove any of it and I can't make him go for a brainscan as he is an adult now, but what is so frustrating is he can't cope I Had a breadown becasue i didn't know what was wrong and all i wanted was that he wasn't suffering which I felt he was struggling to cope, and if I brought my worries up to anyone about it I believe they would be ridiculed and that gets me so distressed that i bury my head but it is such a worry and I also don't know what to do about it, as he doesn't cope but pretends to everyone that he can because he is embarassed