florrie

I have got really bad allergies, severe asthma, and eczema and abdominal discomfort and painful joints ,and allergies to cats and horses, and some other animals not all, where my eyes and throat swell up and itch. I've never been tested for allergies but what I did that I found to my amazement really worked was cutting out gluten and dairy and reducing a lot of things, so my diet is quite restricted fruit and veg and nuts and seeds and the eczema has cleared up and the asthma is greatly reduced and is now very slight. I know the diet I follow is very restricted and not for everyone but it has really helped. The swollen joints went down too but I still have some abdominal discomfort not sure what that is. I hope you manage to work out and get to the bottom of what is causing your son's problems, an allergy test could be worth it.

I looked at his site and it didn't mention asd, but add dyspraxia and dyslexia and tourettes, I'm interested in learning processes myself and neurology and how the brain works and my opinion is you can improve things, as any nt person can too, Iwas tested at lindamood bell learning processes and dx with mixed receptive expressive language disorder, many people with asd have this, comprehension which is about conceptualisation no recollection of story for 5 year old, because I have no imagination or memory of what took place, but photographic memory for facts and chart though. They were the only people who understood how these difficulties affected my life, ie routines obsessions and explained why and it made sense, and I was grateful and the report eventually contributed to me being dx with asd most professionals would understand the report as being related to asd difficulties. They do claim to put in programmes that can help and therefore reduce symptoms, althoug h very intensive 4 hours a day foor 6 months and would cost about ?20.000 but less effective if you are an adult, but I believe if I had had this as a child I would not have the level of difficulty I have now, but I wouldn't want to say it cures because i don't believe that it cures it just helps I think this type of stuff should be in the education system, although on the other side of the coin is I can get to the answer, Ijust can't demonstrate it in the way it supposed to be, so that others understand how I got to the answer, and usually sombody else proves it 20 years after I first had it, basically i process information differently to how the education system says I must process it and that is what gives rise to all these problems, well that is what I think, i don't mean to upset anyone who doesn't agree, and we all have to believe what makes sense to us. I suppose it is always possible that I don't have an asd and my symptoms just mask an asd, I have considered and am still considering that, but I don't think so I have hyperlexia read fluently at 2 and I have had the ADOS test ecently too as a research volunteer, and was confirmed on the spectrum by professor

I really hate asd being described as a behaviour problem I thought autism was a communication and social disorder and the problems associated with that can lead to behaviour problems, my sons behaviour problems when younger were always resolved by finding out what was causing the problems, althoug it is more difficult now and i find there is less outburst if I'm not involved, because we both can't communicate effectively with eachother and it makes me depressed and anxious and him agressive

Hi jayne I hate to write this but I live in South Devon which is absolutely beautiful, about 10 miles from cornwall, I moved here 10 years ago to send my son to steiner school, when he finished first school he was at and I felt state system wasn't working for him, unfortunately he had a breakdown, and later was dx with asd, and he went to another alternative school where he was fine, for 2 years in hindsight much as Ilove steiner schools, the whole creativity side of stuff was not right for his type of learning. Our clinical psychologist and paediatrician were fantatastic really clued up on asd, but the paediatircian left a year later when we needed her when an inappropriate statement was put in place at secondary school, by educational psychologist who did not know was asd was, and he had another breakdown after a year and I had to take him out, when I say breakdown he became aggressive withdrawn depressed and self harming and paranoid, I found out after taking him out he had also been horrendously bullied and was going to school at 7 in morning to avoid bullies. I buried my head at this point not knowing what to do, he went to another alternative school funded by a charity I wasn't that happy about the school, particularly but was just relieved he wasn't depressed etc, but now he is out of school the probs are horrendous, he isn't qualified for anything, his self esteem is rock bottom and mental health probs have arisen again, although his social skills are better than they might have been due to the nature of his school. We have had contacts with various agencies, and the understanding is diabolical there is none basically, we wrote to our MP who contacted regional co ordinator or director of NAS who came down and said it was the worst he had seen, no coordination of any services etc. I wont go on and I'm not saying your expereince will be the same some of this was 10 years ago anyway maybe it is better for children now, but I have heard on local news about 2 children with autism being taken to court for school refusal even though they were being bullied, I think you should look into it deeply and there may be things that can be done to improve services but it is about whether you want to put in the time, I f you already have a good professional where you are you may be able to get them to advise in some way. Sorry this isn't more psoitive hopefully someone else will have a better story, I hope so.

My son has often verbalised that he wishes he were dead, which is very distressing and I know is true having similar feelings myself, in recent years it is probably depression associated with unfortunately very complex negative things that have occured as a result of undx asd, and then even more negative consequences once dx, and because of inexperienced prejudiced harmful professionals, I'd take the risk of dying of measles anyday than being left with the fear and terror of being unable to cope , and suffering long term that way and just not knowing what to do about it or know how to communicate that in a way others can understand instead of thinking one is just being dramatic which is how it sounds i know. The likelihood of dying of measles is obviously not very likely,unless you have already got a compromised immune system in which case the mmr is also quite likely to harm you, as valian skylark said damned if you do damned if you don't. I'm really sorry if Ihave offended or upset anyone, i don't intend too, and I know many people may not see why, but I can't help it and I'm just being honest

I think there may be be many many reasons for why someone develops the symptoms of schizophrenia, I also know someone who developed symptoms out of the blue eventually after he was hopitalised when he became completely incohenrent and went missing they discovered he had an untreated thyroid problem once that was treated he returned to normal

Too make the muddy water even muddier many psychiatrists and particularly those involved in research now believe schizophrenia as we know it may not actually exist, you will never get two professionals who even agree on what the criteria for schizophrenia is, and it is just a collection of different brain processing problems in the brain, but that is also what Autism is. Actually i'm confused too, but just reporting what i read in an american scientific journal, there have been some very in depth studies done on it.

I've had that problem especially when a teenager, I'm not sure but now I know I'm asd I think in my case it is a mixture of sensory problems where you can't tellyou are full, it is like the on off switch doesn't work is the best way to describe it, and an addiction to wheat which is addictive for some people and it was always wheat products I would do this with and I still feel like doing it when I eat wheat, i couldn't eat one croissant, i would have to eat 10 and then I would feel sick but you didn't notice at the time. I t is almost like being an alcoholic, the desire is massive. i find by improving my diet and eating for health reason alone helps and cutting out things like wheat and dairy in particular are the most addcitive foods, many people with asd have sensitivities to these foods even if you might not be directly aware of it

I agree with what you said Timelord, i know others may not, but struggling to cope unhelped and misunderstood with ASD can lead to such severe stress levels, anxiety depression ocd that it can tip over into symptoms similar too or schizophrenic, i can't help believing this is true, My father was dx with psychotic mental illnes but i believ is undx asperger but he has been fine for last 20 years since all kids left home and removed his stress. and my son has had symptoms that tip into something resembling psychosis although not dx, and I've had the same myself.

I don't think he is either, he is clearly able to grasp complex concepts and is highly organised most dyslexics are, many highly successful business people are dyslexic Winston Churchill Richard branson, Michael Heseltine to name few but asds and adhd aren't, all those recipes are from the mind of someone highly organised, I can only do about three recipes and it can take me from a week to a month to organise and by the time i've got it all together the first things have gone rotten. He has also got a highly imaginative and a creative mind and i think is very socially adept and can organise a team of employees. My opinion is that asds would not be able to do all that

ASD people do have heightened sensory stuff and that might include sensitivity to colours, and taking in other types of information that might appear psychic to others, there was another topic on this on another foum because they process differently and will take in stuff others can't and can make complex conclusions to things others can't as well. I sometimes wonder whether the voices are just thoughts which everyone has, and I know I have a lot of negative thoughts that can become frightening but I still believe the negative thoughts come from having lots of bad experiences and heightened sensory stuff, that others are not understanding and therefore cause stress. I'm sure this can get really bad for people but it just my thought on it slightly off topic but I also believe bad behaviour in asds is overload to do with them not being able to communicate what i distressing them. My son says he sees things but he knows there not real, I have also had this in the past and still not sure what I think but i rationalise it with explanation above. sorry this is not very helpful but just my thought on it

My son went into a coma three days after his mmr booster, he was vomiting and delirious no one knew what was wrong, I have no idea whether it was linked or not, but can't help feeling it might be. when he was 8 they did them again in his primary school because they said at the time the jab that group of children had had before school was faulty, I was the only parent who refused to have J done but at the time this was before the Andrew Wakefield stuff about 9 years ago but I was just suspicious. I got loads of threatening letters saying my son would get measles, there was going to be an epidemic, and he might die go blind etc etc. I knew it was scare mongering and there never was the epidemic they said was coming, and the strangest thing of all one of the children actually went down with measles after the jab, they said she just reacted in a weird way and it actually gave her measles. i know if I had my time again I definitely would not have the jabs done and where I live they strike you off gp register if you don't have it done it is like no one is allowed to make the choice they feel is best for their child and people feel forced to have it, and the the gp surgery gets more money if you have it.

MY gut feeling is that he would be fine with the dog a lot of asd people relate far better to animals than nt do, not always of course, I know I do and it is clear that Temple Grandin does too with her inventing this system to prevent animal suffering the stress they do going to slaughter, that would not occur to a nt person.

How about some of these professionals being sent on a course run by the NAS so they understand what asd is and how it affects people, The regional coordinator offered to train any professional involved with me or my son, after MP intervention, because the understanding within services was the worst he had seen where I live, but it all seemed to die

please don't let my experience put you off, as I said i don't know of anyone else who had this it may be jsust me if ssri are ok than probably they will be too

i thought I would add my experience here with 5htp, it idid actually give me mild hallucinations, ie snakes crawling everywhere and horrific nightmares when i stopped, taking it the snakes stopped, i tried again 2 years later and it did the same thing. I have not been able to find out why but clearly it was reacting with other neurotransmitters and causing an imbalance, but I haven't heard of anyone else but me having this reaction and most people I have spoken to o who take it have found it helpful. Other meds didn't agree with me either, and i would really prefer to go to a neuropsychiatrist in america where they do high tech brain scans and can tell from abnormal funtioning areas in the brain which meds to us it is more accurate and some people with temporal lobes problems which you will probably have if you have language processing probs or asd can react badly to ssri so they need to balanced with temporal lobe stabiliser ie anti psychotics such dekapote or risperidone etc of course when I told my gp this they just looked at me in disbelief it doesn't seem to occur to them that neurotransmitters are involved, extraordianry the world is completely mad, oh yeah of course its me that is supposed to be mad, and what i think from all the stuff i've read doesn't count

Thanks everyone for all the great support, thanks for the link nellie for the tick box thing for dla i wouldn't have found that with out you putting the link on it looks useful, one of the problems we still have is having any kind of specialist with adults that can be used to contact for verification of difficulties, who understand the difficulties even basically which is why I was trying to get referred to one, and one that might be aware that the constellation of symptoms is different in females, but I am now pretty certain they are being blocked by who i'm not quite sure, it could be someone on pct and k thinks the gp who struck me off my supportive gp list after suicide attempt because he said I had an "unhealthy" relationship with him is on the pct committee, this gp also forged a letter from a pyschiatrist who I saw for 5 minutes in hospital and who barely spoke a word of English as he was foreign and agreed not to send details of conversation to gp who apparently said I told him my gp had struck me off but I hadn't been struck off at this point so couldn't have said it could I it is really complicated to explain, thing is K was behind the curtain in hospital and heard every word so it was forged to encourage my supportive gp to strike me off, and the gp who struck me off said I was trying to harm the nice gp. some months later that gp who was great at first but then began to be very unkind did resign from practice and became a locum. I think the horrid gp was furious that I attempted suicide under his care, because he forbid to speak to the nice one which threw me over the edge and led to suicide attempt and he decided to set the other one up to take the responsibility, by blaming him for encouraging "unhealthy" relationship, by of course I am aware that at the end of the day I chose to attempt suicide and that is no one responisbilty but my own, but then I was having bad reaction to seroxat the meds I was on and trying to withdraw which also didn't help and I was being misinterpreted left right and centre which made me hysterical, and J was also having a breakdown due to bullying etc and that wasn't understood either I've made a right mess of trying to explain that never mind. I'm sure it is as clear as mud I don't know of any other specialist other than those I have contacted 2 agreed it was serious and agreed to see me one then changed there mind and said they were restricted and the latest agreed to see me upon pct funding but that has been declined, a bit weird as they agreed the previous one. I'd go privately and borrow the money but don't know who to go to. i can't prove any of this and if I dwell on it too much it can tip me over,and I know I keep repeating this stuff over and over, so sorry about that maybe i think I'll get some clarity in something by doing so.I find it difficult to stop going over it in my head, although I know it is not helpful. I don't really know what to do about it, but I can't help feeling angry that they are in a position to do this and I can't do anything about it, I don't think it is my gp although I don't know for certain. All i'm trying to do is get some understanding so we can go forward, all of us if I get verification i will feel in a better position to help J My son got his accommodation I believe due to MP input last year, so again very grateful fo that,J did go to top of list but it still took several months.

I am just posting an update on my son J who has now got somewhere to live, and things are going relatively smoothly much to my relief. I haven't had much contact as K told me to stay out of it as I would make things worse, but after a week, last saturday we went round just to check there was no blasting music coming out which to my relief there wasn't. we knocked on the door and went in, he seemed uncommunicative but that is not unusual but the place was spotless, he has a friend staying with him who I think is also homeless, which he is not supposed to have but his friend looks out for him and I think it was spotlless because of friends input, ok there were loads of beer cans but they were in recycling sack. I was impressed and relieved. K saw j today and said he looked clean and tidy and had some new shoes and seemed quite together, he is getting incapacity benefit for a month, my worry now is it runs out soon and obviously doctor seems to think asd people end up in prison, and didn't seem to understand asd at all and I don't know how to get this continued long term, does it have to be issued monthly we have heard nothing from cmht who didn't seem to want to know any background info to his drug and alcohol addiction or that he was asd and had sensory overload etc and would probably write to J who would probably throw it away not really knowing what it was although i might be underestimating him. On a plus side he is extremely grateful that he has been given somewhere ot live and is trying really hard and making a real effort to deal with alcohol and drugs by cutting down, he wants to work, but without proper support or understanding for his difficulties It hasn't been successful in the past, I think we need to continue with incapacity benefit for him for the present , does anyone know whether this will be possible, this was job centre's advice because if he doesn't sign on because he forgets or gets phobic they just stop benefits and everything will get worse again. I'm trying to find ways of dealing with this before we end up in disaster land I'm trying really hard to be positive and to move forwards positively and not blame people.although it is hard and am grateful, for the accomodation he has got, and know there are people worse off but I worry so much, and I have to rely on K to sort things out and I'm grateful for that also. Thanks to everyone for there advice and kindness and if I seem whingey and whiney and rambly it is just I get so frustrated, and although I feel positive to day, and I know I have to go forwards positively there is nothing else one can do really, I might not be tommorrow when the next thing goes wrong and causes me intense anxiety so forgive me in advance.

I think pesticides will give the body poisons to deal with that we are not meant to deal with, although maybe we adapt like the pests adapt to them, and they have to keep finding stronger stuff to destroy them .

THe "symptoms" of Autism which seems to be the only thing looked at by professionals, these symptoms are caused by auditory and visual processing difficulties which is partof what the researchers are looking at, and there are treatments that can help but not on nhs and not many in the uk, widely available and recognisd in other countries. sensory processing difficulties are also relevant and don't appear to be tested as part of asd, I had mine tested as a research volunteer as part of asd stuffby leading professor, the auditory processing difficulties is what causes people difficulties in conceptualising taking things literally and communicating, communication diffficulites have got nothing to do with being able to speak articulately, but more about saying what it is you want to say and being misinterpreted, although it maybe lower verbal in other cases like my son, it also is linked to obsessional behaviour as the mind is so chaotic it is the only way to get some order into things, my obsessional interest at first were treated as something to be eliminated with no understanding that I was asd and that is how I function, and made my life hell, and my nhs still believes these are the treatments i should be having, if I say it makes me feel distressed they say it is my attitude which nearly pushes me over the edge. My son and I both have both narrow rigid interests soemetimes called obsessional which is what they tried to treat and ocd which is seperate which they didn't try to treat actually they didn't appear to realise the difference. Thankfully my son had tests as part of dx for asd which made able to understand it and realised I was on the spectrum myself.

MY asd son went into a coma 3 days after his booster mmr, he had bad reaction to first one as well, but i didn't notice any regression but never thought it was linked. He was really ill in hospital and no one knew what was wrong with him, it was really strange because i didn't understand anything that was happening at the time. I'm convinced it was linked to his coma now.

on the edge good to hear of others using this, I do a number of things too and I have had some improvements definitely with general health, but I agree it is difficult to pin point exactly what it is that is helping

There is a mineral i have been using for sometime called zeolite, itis a natural mineral and has research has found that it is a major breakthrough in chelating the body of heavy metal carcinogens viruses bacteria and fungi. there is lots of reserarch been done. I can't do the links to put info up but if interested you might find info on a search. there are really highly renowned people that believe this mineral is the most important supplement anyone can take for living in todays modern world I will ask research boffin if he can put alink up on here to provide info

the other thing I don't know if this is an issue but you don't have to send your child to school, I took my son out when he was bullied and had breakdown, had no choice, but ex partner blamed education authority for failing to provide proper educational plan and we never heard a thing, one of my friends who i believe may be undx asd very similar to me in so many ways and have similar obsessive interests in really obscure stuff gifted mathemetician but just is eccentric as hell more than me,has never sent any of her children to school educating at home can be whatever you think education should be she has never had any problems with anyone,it would never occur to her that not sending your children to school would cause a problem, and she has never had one and her eldest are adults now. although i know people get threatend and I know that must be terrifying. i don't know if that helps but it is another perspective.

I just read your post again because I don't remember what I've read, how dare they say they will take son into care when you are trying to help him that is abuse, they are the ones doing the abuse my point precisely, but i fyou say so they say you are delusional more evidence to take you son into care this is the way it seems to work, and it can genuinely drive you over the edge as it has with me. I'm so sorry for you i don't know what to say but I'm sure others here will be able to help you better