florrie

Just to inform you those who are interested, that things are getting even worse despite Mps involvement Social Services now want to put my son is a residential setting with mentally reatarded people which i do not feel is appropriate for him as he has been so completely independent for so long, where he won't be able to mix his music, his main interest at present, and that all his idiosyncaracies ie sleep disorder, refusal to use to toilet used by others, smell of others, etc they don't understand his difficulties in , commuincating and that this is likely to lead to agression as a result, in fact they don't understand anything at all, i am truly staggered, as we had and excellent psychologist and paediatrician when he was younger. I don't know what to do, I feel I've made things worse and feel jake will have a breakdown or worse attack someone and injure them, and I just see no point continuing to fight, because i haven't got the skills and they tutn it back on us awkward unreasonable, bad parenting etc. I t will also be a long way a way and my ex partner is going along with it as he doesn't want jake with him and I can't cope, I have offered to have him with me but he refuses. I am sorry this is so negative, or that I feel so negative about this I will write again only if I have something positive to say

Thank you Nellie, I may have too again, and thank you for your help.

Thank you baddad for putting topic in right place and thank you everyone for support, I will let you know in due course what occurs from this.

I put this topic under resources by accident, this is so typical of my processing problems, and only just realised. I don't want to write it all again so please read in resources if interested.

I am delighted to report some good news although things have been so dreadful, my gp has just deliberately messed up my referal to a specialist who had agreed to see me and assess me, he implied in referral letterI had already had assessment on nhs, when it was private and involved no gp input as they were all so unhelpful and caused me more distress than I was already in and implied that he provided it andI had been offered support. I was offered support like psychotherapy. I saw 5 gps 4 psychiatrists 4 psychologists 4 counsellors and told them all I thought some of my difficulties were related to aspergers and seeing my son get inappropriate harmful support from people who have no idea, that led him to have a breakdown, also contributed to my distress, but now I'm phobic of the medical profession However my Mp decided to help, after my ex partner contacted him and has written to regional co ordinator who wrote a very detailed letter back which has been sent to my expartner specifiying what we need to do and if I get my assessment on nhs, he will get involved with any professional involved and provide training and understanding of asds, and ensure my son gets the support he needs. I feel so delighted at this, except I 've got to try a recover my assessment, and I don't know if I'm going to be able too.

Hello andrwg, I have similar experiences with anxietyand i also do have paranoia but probably with good reason after some the experiences, I have been through. I'm glad you feel generally contented though.

I relate to what you are saying andrwg, in the past people with aspergers got misdagnosed with scizophrenia, the experts researching schizphrenia donn't even think it actually exists, and think it is a collection of different symptoms and yopu won't get two experts who even agree exactly on what it is. The researchers into schizphrenia have discovered there are information processing difficulties often with language processing and neurotansmitter problems and a collection of other things, only I can't remember what they all were now, but some of them were similar to autism, I wonder if someone with undagnosed autism is living with anxiety for solong and being expected to cope when they can't whether this would tip them into a psychotic or semi psychotic state simply because the brain can't cope and gets overload, of course this could be then diagnosed as a psychotivc mental illness which is what happened to my father.

Just to clarify, the incident that occured was when my son was camping in the garden, because in his mind he thought that was leaving home, and he was attacked by butchers with butchers knife, however the story that was given to Ken by butchers was different, which is why he lost his temper withmy son. I found out the true story by my other son who had seen some of it, My autistic son can't articulate what is happening and just gets aggressive.

Thank you for your help and support everyone,my son has come back but is very depressed, he was attacked by some people who run a business where my ex partner lives, and my ex partner had thought it was him, but it wasn't, all he wants is a job he can cope with, but he can't cope or understand the system that exists to get one, and I can't cope with it either, he won't acknowledge that he has autism and I've realised i have to try and respect his wishes but it is very difficult, because I have an overwhelming sense of fear for him. The MP doesn't sound as if he is going to be helpful which is demoralising, my ex partner got 3 minutes, but did leave him with a briefing pack which was 7 pages, perhaps too long if someone isn't interested, My ex partner has said my son can stay with him a bit longer which takes the urgency off the situation for a bit, although I'm worried in case there is repeat while he is away with these people picking on my son until he flips. Have to see what to do next and see whether my partner will continue to support this cause, he has become outraged when the psychologist said there is nothing for autistic adults in the system, because autistic people can't articulate their needs effectively it gets ignored, but whether he will continue I don't know because he is very busy, but I reckon he could be quite effective with others that are aiming for the same, I don't think one person can do it, it needs team work. I'm quite good at research in some areas, but can't apply it or communicate it effectively, I pass everything on to my ex partner. I feel really strongly that the system needs to be change to accomodate autistic people high functioning autistic people and aspergers needs, because I feel many will develop mental health problems as a result like me and my son and that is not right Thanks nellie for link to document, I've sent it to Ken my ex partner

MY 17 year old asd son has disappeared, after argument and misunderstanding with my ex partner, the social services want to put him in b and b 20 miles away in a big city we live in small town, away from friends and support network that he has. I can't cope with him, because of my own difficulites and his agression toward me, I offered tohave him with me, but he absolultely refuses and I agree, so I'm not being horrible by saying that. all I want are his needs met, but social services don't understand those needs and his mental health already fragile has become worse. We saw his psychologist last month who said there is no support for autistic adults at present, my ex partner feels this is unacceptable and is getting very angry with everyone which I don't think helps, he has found a legal document that says people with asds are entitled to proper housing, but they got angry when he told them and said that I had no difficulties apart from anxiety, and I know that is what my gp said, even though I have been diagnosed with an asd, he wouldn't accept it because it was private, I get the impression he doesn't think these things exist, I'm not in a position to change gp , because I was struck off after suicide attempt 5 years ago and have been too afraid to go since, so my ex partner deals with it.My Gp has agreed to refer me to a professional who specialises in asds but only because I had a letter acknowledging the seriousness of the situation, but I wouldn't be surprised if the referral never takes place, it is almost as if they want to tip me over the edge. I asked for a referral 3 years ago to an asperger clinic and the referral never took place. I feel these people do what they like to you if they feel you can't fight back. My ex partner is seeing MP tommorrow so I really hope we get something moving for my son, On a wider note I don't think any of us should accept the inappropriate treatment by people with no understanding of asds which increases their suffering, my ex partner says it is human rights abuse. I'd be interested to know if other s agree and what we can do, because there is potential time bomb ticking away, as all these children will become adults.

I'm interested in the links between asd and mental illness, my own father had been diagnosed as manic depressive in the 50s after suicide attempt, when forced into a job he couldn't cope with and he would get very violent and completely mad when I was a child, when he was overloaded with stress, I now realise without a shadow of a doubt he has apergers obsessional interests to the exclusion of all else and lifelong social withdrawal, he couldn't cope with work he would get stressed and violent, luckily my mum was the main bread winner,he very rarely has these episodes now and not as severe all his stress has been removed ie children, but doesn't acknowledge it is anything to do with him, but he thinks other people made him like that. I'm also interested in nutrition and have read Patrick Holford s book on optimum nutrition for the brain, many people think gluten is a factor, it is certainly worth trying many people get some improvement, a psychiatrist in America claimed to get complete cures of schizophrenia when cutting out gluten and testing for deficiencies and correcting, Mercury is also something that maybe related, research has shown people with autism to have a buildup of mercury in their system. Things going on in the brain are very complex but I believe that foods and poisons could affect it to some degree. As for your friend, it could be aspergers, I would want to have tests done to test cognitive function of receptive language processing by someone with knowledgeof asd which would be a clue, because, these processing problems are what are believed to give rise to the autistic symptoms ie obssessions need for routines social withdrawal or other behavioural problems.

I can tell you my experience and how I realised I was on the autistic spectrum if that helps, When my son was diagnosed at age 9, 8 years ago it was a relief after many years of wondering what was wrong. The first book we bought was the one by Tony Atwood, when my partner read it he said this is just like you, my response at first was don't be ridiculous, but when I read it again with myself in mind, I began to see that I also had the same things ,obsessional interests, need for routines, anxiety and excessive shyness bordering on social phobia, I had to revaluate everything, but it was also a huge relief and everything that had been previously confusing suddenly made sense. It may also be a relief to your son in the end if knows although it may be difficult at first for him to accept.

Hi, I'm really sorry to hear of these difficulties and i really relate to them and how you feel, I've been there myself and after 15 years of realising something was very wrong am still trying to find appropriate understanding and acknowledgement for my son and myself both on the autistic spectrum. All I can say is hang in there, most of the professionals didn't have a clue what it was, or how to treat it appropriately although there are some out there, my answer to it is to do some research to find an appropriate professional who does understand. My thoughts are with you.

I was so relieved to see this topic because I have believed for some time that my eating disorder was related to my asd and i have real difficulties getting my asd recognised because it is so well masked, nurtrition has been one of my obssessive interests, I know as much and probably more than anyone on nutrition, photographic memory for charts, I know the nutritional components of all the different green leaves etc but haven't found a way to apply apply my knowledge in a useful way due to the information processing problems, this has lead me to being very obssessive with food, eating only raw food thinking it would help asd but eventually lead to nutritional problems, also can't organise meals so eat same thing every day usually salad and fruit, can't deviate. When i was younger before I became interested in nutrition, and when I reached an adult and could eat what I chose, I would binge eat cakes bisuits chocolate and nothing else and then would feel sick and got fat which I hated and resulted in fasting and binge cycle, but the underlying reason I believe was information processing difficulties and possibly sensory ones to a degree, Now I eat purely what I bleieve I should eat nutritionally, I never eat what I want because something like a croissant would make me want to eat 10 croissants, it feels.addictive to me, and because i now know the damage this stuff does to the body, i couldn't eat it.

I am so sorry to hear of your difficulties withy your son and my sympathy really goes out to him as he seems to be suffering a great deal. My son also had a breakdown at the age of 12 and became both withdraw and violent, and I had to take him out of school, his education plan had been inappropriate for his needs, when he came out for good he improved but he went to an alternative school where he could follow his interests, this was paid for by a charity.I found out months after he came out of school how horrifically he had been bullied by gangs of older children, stealing his lunch money everyday and being physically violent to him. He wasn't able to communicate this and withdrew and became violent as a result. I'm not saying this is happening to your child, but there is almost certainly a problem that you need to find out what it is, my son also won't attend a doctor or anything , it is very difficult. I really hope you can find out what is making him so unhappy

I related to this article myself, communicating with others is what causes me so many problems, trying to "normalise" asd will lead to mental illness instead of just accepting people for who they are.

Georgiegirl I'm interested in the b 12 injections, I've heard they have been used for various cognitive disorders , where can you get them done in the uk. Also interested in the mercury issue as I have a mouthful of amalgam fillings,but it is too expensive to get removed

I also have thought for some time , that there was an interesting link between overeating , bingeeating and sensory issues and autistic spectrum disorders. I had an eating disorder as a teenager, and alsoused to binge ate, when I became interested in healthy eating, I realised there are types of food that are addictive, all wheat based products,especially biscuits cakes with added sugar more addiction, I'm sure most overweight people overeat these things, wheat is also supposed to create opioids which has drug like effects on the brain, anyway none of this is proved , but I suspect there is a link

You could try looking in a good health shop. I know the one I go to, does a nutrtional powder shake for children, I'm pretty sure, it is free of the usual nasties and dairy gluten etc. take something called living fuel, made out of rice protein and all sorts of good nutritional support added but it is not for children.

Hi darky, I agree with you, thankfully at least you are aware of the difficulties, I'm still struggling to get proper recognition for my son and my own difficulites and I think most people are here, the concern I have is that if you are a passive person on the autistic spectrum, sooner or later you may have a breakdown with the stress of everything, which is what happened with me, and I was still being passive then, so they didn't even recognise that, mind you |I also have communication difficulties, which contributed to my difficulties not being recognised and it made things even worse, because i was already extremely unwell and unable to cope, and then was blamed for it. Your son does sound similarbut at least he has got a mum who is aware of his difficulties, so hopefully this will prevent what happened to me happening to him.

The other thing I wanted to add is that I wonder if passiveness is more in girls than boys, but I'm sure there are many exceptions. I remember Tony Atwood saying in his book that the belief that aspergers was mainly a male condition was probably not true, it is just that boys tend to cope with stress and overload by becoming agressive and developing behavioural problems which cause problems to others and therefore get noticed whereas girls would withdraw, mask more and become invisible hence less diagnosis of girls. before I knew I was on the autistic spectrum I used to develop different personas, I was like a chameleon, I, would be whatever I thought the other person wanted me to be, i think it was because communicating was so difficult that just agreeing with others and being what you thought they wanted was easier than having to communicate or relate to them, just masking ,it is a way of getting by with minimum stress. Now that Im aware that is what I had been doing all my life, I try not to do it but the behaviour is so engrained that I still do it although I'm aware of it now. My son also does it but to a lesser degree probably because he went to a school where he felt more comfortable to be himself.

When I saw this topic I really related to it so I thought i would add my opinion on this. My son although now 17 was extremely passive in school, he developed nervous tics when he went to school and when he came out he would have the most awful aggressive tantrums, I soon learnt because he didn't communicate well, it was a sign that something was wrong, the tantrums and agression would come and go depending on school experiences and once he had an amazing empathetic teacher and he did really well with confidence and self esteem and he didn't have the tantrums and was more communicative and less anxious for a while. Environment seemed to make all the difference to the exhibition of asd symptoms in my son, but unfortuately the positive experiences were very few and far between, if people had more understanding it would help our children so much. I also am extremely passive, and it has become completely engrained in me, I can't say or express how i feel and sometimes I feel like screaming, how I feel at people, i think I did once but no one understood so now I don't bother. I had a breakdown once and went beserk with the stress of everything and plastered the entire house with childrens paint and I felt mortified by what I had done, so I struggle now to keep myself free from stress as I can so I don't get like that again, thing is no one understands at all, and that makes me feel even angrier, but I have to try and accept it. Oh no I'm rambling again, I don't know if I'm making sense, can't quite get out what I'm trying to.

Has anyone had any experience with lindamood bell learning processess, they are american speech and language pathologists based in London now who have spent many years researching the underlying cognitive difficulties which causes learning difficulties and information processing in people with hyperlexia aspergers syndrome and high functioning autism, also covers adhd and dyslexia. I found these people to be amazing, they understood from the tests all the difficulties i was experiencing without asking me loads of questions. problem is it is very expensive, but worth trying for those with money, the younger you are the better i gather. I can give further information on details of treatment and how it works if anyone is interested. It was too expensive for me but I think it is worth contacting charitable trusts to see if they can help .

I have been advized to consult xxxx by Donna Williams, I have an asd hyperlexia and auditory processing difficulties and a son with with autism, we both have additional mental health problems as a result of lack of support. Can anyone confirm the location of xxxxx, Donna thought she was at Kings College hospital. Also if there is anyone else suitable privately could you advize me. I feel very desperate and unable to cope. Thank you