CarolJ

Hi all, Kris thank you for your painstaking research - pat on back. The thing is the more I am reading the more uncomfortable I feel. I cannot get my head round the fact that they are looking at "normal" infants and talking about ASD traits. My son's ASD is not a trait it is severe (he is low functioning). Where do children like my scott fit into this. My son also has leaky gut bowel problems. Is this down to "hormones"? I think as this study talks about traits it is leaning towards higher functioning ASDs like Aspergers. If that is the case for screening unborn children then I feel cold at the thought! Was Albert Einstein not reported to have Aspie tendencies. I bet most of the research scientits working on the project have a trait or two. If you start to do away with all people who "could have ASD traits" then what of the Einstein's of tomorrow. I am still confused as to where kids like my scottie fit into all this. Perhaps they are still working on that one - will try to read the research or perhaps phone them and ask - would be easier!

Bid, I could not agree with you more. I had a meeting today for Scott for school placement. There is no school that is suitable for my son in our borough and he has to go outside the borough to go to school. I asked the Assessment Officer, ASD specialist, Head of Early Years (why not??? Surely my scott is not an isolated case). Told me that they are aware of the problems and said they have had an explosion in ASDs and they cannot cope. They have the same problem every september intake. I asked why isnt anything being done? They answered lack of funding and they are looking into it! I have had an offer of an out of borough school. He should start this September. This school can offer him a place September 2006!!!! So yes, the fight for the support and services for our kids goes on everyday. Perhaps the powers would look upon screening unborn babies as a solution to their problem of lack of services. Of course, that is if this research is correct of course!

hi, guys I have just seen another article on that Cambridge study BBC Online Is it me that I think we would find a shortage of boys in the general population and I think individuality could be a problem, are we not all individuals - what a boring world this would be if we all thought and acted the same? They studied 70 kids in this study all non ASDs. I attach below Autism link to male sex hormones About one in 1,000 people have autism Autism may be linked to hormone levels circulating in the developing foetus, research suggests. A team from Cambridge University found babies who produce high levels of the male hormone testosterone in the womb are more likely to show symptoms. The finding suggests the condition may be genetic - and raises the possibility of a screening test. It also lends weight to the theory that autism is basically an extreme form of the way men think and behave. "What I am doing is testing this idea that autism might be an extreme of the male brain. Professor Simon Baron-Cohen The research, led by psychologist Professor Simon Baron-Cohen, focused on 70 children whose mothers underwent an amniocentesis test while they were pregnant. This enabled the researchers to measure levels of foetal testosterone in the samples. When the children were four, their parents were asked to complete a checklist designed to record any signs of behavioural and social difficulties - which are associated with autism. Social difficulty Speaking at the British Psychological Society annual meeting, Professor Baron-Cohen said: "Those who had a high level of testosterone also found it more difficult to fit into new social groups." Children who had higher levels of foetal testosterone were also less curious than other children. Although these children were not autistic, the pattern suggested a link between foetal testosterone and autism-like traits. Professor Baron-Cohen added that earlier tests, carried out when the children were 12 months old, also showed that those exposed to higher testosterone levels were less willing to make eye contact - another key indicator of autism. Previous research by the Cambridge team has shown that men are less empathic and more systematic than women - differences that are greatly exaggerated in people with autism. Professor Baron-Cohen said: "What I am doing is testing this idea that autism might be an extreme of the male brain. "It's showing that the sexes are different. It's not about one being better than the other. You're going to find individuals who are not typical of either sex." Stuart Notholt, director of policy and pulbic affairs for the National Autistic Society, told BBC News Online the research was a "significant contribution". He said: "However, it is early days yet. We are still quite a long way off understanding what genetic underpinning - if, indeed that is the cause - there is for autism." Mr Notholt said many people would be "very uneasy indeed" about the prospect of a pre-natal screening test for autism. "It is a very varied condition. Many people with autism go on to live very full and happy lives." Professor Jack Scarisbrick, chairman of the charity Life, said a screening test would inevitably lead to pressure being placed on parents to abort autistic babies. "Testing and medical screening to provide information and prepare parents for the specific challenges a special-needs child brings is to be encouraged. But that will not happen in this case. "What chance does an autistic child have of survival when children with cleft palates are aborted?" The research is due to be published in the Journal of Child Psychology and Psychiatry.

Hi Elefan Hi Elefan, thanks for the "poetic licence" endorsement. Unfortunately my ranting and raving usually includes words of the more "colourful" variety. I am actually able to express myself better by writing things down than verbally. Its just as well this is not a "speech" forum. I would have been escorted off the premises long ago! Will post a copy of the Independent's reply or perhaps they may actually publish the letter! Take care will keep you all posted. PS. Do you think I am overreacting here. I find the article frightening because it seems to point towards higher functioning ASDs traits not the severe ASD that my son suffers from. If that is the case then the thought of aborting perfectly healthy babies makes me go cold. Let me know what you think.

Hi folks, here is a copy of my email/letter to the editor! Wrote it last night whilst steam coming out of ears. will let you know if I hear anything. By Maxine Frith, Social Affairs Correspondent 18 April 2004 Dear Editor Having read the article which again looks into reasons why autism exists, Professor Baron-Cohen suggests the condition may be entirely genetic rather than environmental.

I have read this article and they have not actually studied anyone with autism. Only autistic traits which I think 99 per cent. of the population will have an autistic trait in one form or another. My son had excellent eye contact and speech and social skillls at 12 months. By 18 months these had all but disappeared. Also the report is talking about "traits". What about the severe form of autsim that my son suffers with, bowel disease, poor pain response etc, non-verbal etc. Why does regressive autism suddenly appear. My son was not born with autism. He became autistic. I also find it really scary that they are proposing to screen for "autism" in the womb. If this theory was (although I have very serious doubts) right. None of our children would be here today. I find it highly insulting that they have not included anyone who was "autistic" in this study. How is it a study on autism without studying those with autism. What about the thoery of difficult births - has that a connection to hormone levels? Sorry I think the thinking behind this would result in perfectly healthy babys being aborted. Another step towards deisgner babies! Sorry folks, I have written a letter to the Independent about this article. I find it highly insulting and worrying especially about the part of screening unborn babies. I cant put down my true feelings about the article because Kris would be banning it. I am open to any suggestion or theory but I really dont think unless they study someone with autism or who goes on to develop autism - how this theory can be substantiated. Sorry folks, this really upset me.

I am so sorry to hear of this teasing and bullying, the school is responsible for this. What is their policy on bullying! They should be watching out for this especially if they suspect your son might have AS - and you said you spoke to his teacher. My daughter has had a couple of incidents where she has been called "fat" or "stupid" and some boy stole her crisps. I straight away spoke or wrote to the school. Thankfully that was the end of it. You say you son does not want you to contact the school - perhaps you can do it so that he does not know about it - the school have a duty to keep him from being bullied. Even if he did not have suspected AS. I think it is really terrible, poor thing. My blood is boiling on your behalf!!! Perhaps because my daughter is statemented they tend to watch out for her. All I know she is happy to go to school and enjoys it (she's 8). I did worry about mainstream schooling but I think I made the right decision. She is "touch wood" happy at the moment. However I always watch out for it and am sensitive in case anyone upsets her - too sensitive in fact! Something will have to be done - it sounds like its upsetting not only your son but as a mum you must feel terrible - you poor thing. I think the SENCO may be the best one to talk to. Again, I am sorry and I hope it gets resolved - you must feel helpless and your son sounds frightened - its funny but that is what bullys rely on - kids thinking it will get worse if they tell! Good luck anyway, thinking of you.

You know what, I felt a relief when I finally got the diagnosis. It was weired - I cried and greived when someone first cofnirmed my fears and suspicions that there was a problem. It has got to be one of the hardest things in the world to acknowledge the perfect baby you brought into this world - all the hopes and dreams and plans - I wanted my son to be a doctor, his dad always wanted him to play for Glasgow Rangers - that all changes - the goal posts move with any disability. It is hard to suddenly - especially at the age of 10 - to hear about the possibility of AS or anyother problem. Noone tells you how to deal with it. They tell you oh he could be AS, goodbye - and off you go - in shock! Question upon question in your head - sometimes I think these professionals should have lessons on how to tell people! Everything seem to change when you actually hear someone else say there is a problem. I remember I broke down sobbing on the train the next day on the way to work - I could not help myself - I started thinking and that was it! I was a blubbering mess! You know what these rush hour trains are like!!! Noone knows how to take you! In hindsight it was funny but at the time I felt terrible. Go for the diagnosis Purdy - in the words of the immortal Del Boy "you know it makes sense"

Is he able to read moods? Ie can he tell by looking at someone ie a picture whether they are sad or upset or happy. My daughter has problems with verbal humour and jokes. I love red hair and freckles - kids can be so cruel sometimes. I think for your own sanity you need to push to get him "assessed". The possibility that something may be wrong with your child is a really hard thing to deal with. Beleive me I've been there! The anger the questions why my child - I could go on forever. It sounds as if this realisation of AS may be quite a recent thing so you are probably still in shock. Please please please - don't feel you are alone. We all know and understand how you feel,the worry the fears the tears and the anger. Perhaps if you get him assesed it may turn out that he does not have AS, I often wish that one day my son would wake up and be like every other like boy - wouldnt it be fantastic. I felt as if I greived for my son when I found out - I honestly felt as if I had lost the child I had thought he would be - but I love the child he is - even though he drives me crazy!!!!! Please don't feel you are alone, we all understand. Take care, must go now, WWIII is going on downstairs. spk soon

Purdy I am no expert but I you son really sounds like he is confused and seems to know he is "different" - that is classical aspergers. The awareness of feeling different is really hard. There is a post on here re whether kids are aware of their ASD. I think you will find on the whole that most benefit when they know about their ASD. Otherwise they struggle to understand why they are so different from everyone - that itself creates problems - frustration, anger and behavioural problems - they lash out and who can blame them. Sorry I don't want to analyse here but from what you have put down I think you and your son both would benefit from having a diagnosis - also he would get the understanding from his school and teachers, people and youself - in general. It seems easier when you know for sure (I think so anyway). You cannot force or expect an AS person to conform. Their minds just don't work like that. They take thinks very literally ie. You drive me up the wall! - they would look at you and say "how can a car drive up a wall - confused at what you are talking about" Or "you are doing my head in" - they would look at you and say "I am not touching your head!" - You have to be explicit and don't use "sayings" - everything has to be literal! Does any of this sound familiar? Anyway - what is normal? I hate society sometimes! Perhaps our AS kids are normal! Also AS's like to know ahead - they hate changes in plan or routine - when I gets upset that you go into a shop other than one already mentioned - it sounds that he has problems coping with unplanned changes or routine. Another classic thing. I have to stick a routine like a sergent major otherwise my son goes ballistic! Regards

Welcome Purdy1 - sorry to hear - we all know that feeling of despair! With my two I asked for a referral to Educational Psychologist - they are the ones who assess the child's needs and make recommendations for educational needs. It is (unfortunately a longwinded process) but on the plus side you do get input. I am sure a child does not need to have a diagnosis in order to a statement for education and help in general. I think the SENCO may be able to refer you to an educational psychologist. Whether or not you choose to push for a diagnosis I will be your choice but I think by the sounds of it you sound pretty upset by it all! I personally feel with a diagnosis it is easier to explain to other people what is wrong with your child. Otherwise you feel you have to try and explain and it can be longwinded. I find the word "autistic" usually shuts people up! If you read some of posts on here about our kids I think you will find that you are certainly not alone. It can be isolating when you feel your son is the only one. We are all in the same boat here! Welcome again and hope to speak soon and remember you are not alone!!! - sounds like the X-files here! Regards

chq for fixing signature bouncing its way to you as we speak! thax for welcome

thanks Kris, pretty friendly lot on here! You will all have to excuse my warped and twisted sense of humour - if I ever offend anyone it is never intended - perhaps I should issue a pubic health warning - perhaps amend my signature!

I can totally identify with your feelings that sometimes wrong - mum's know their kids. I have a real battle with my son's consultant (who also happens to be my daugthers) I told him what had caused my son's problems and also I strongly suspected my daughter's. He did not seem impressed at all. I insisted on the diagnosis for autism because my friends little girl had been diagnosed ASD (by him). He would not diagnose and referred me to another "ASD expert". Within 10 minutes she confirmed scott's ASD. This consultant really does not like me as I argue . Tthe side effects listed by the manufacuturers of MMR state neurological damage as a side effect amongst many others. I have asked for a MRI scan because Scott is not making progress and I feel that he may have brain damage. Again, talk about fight for something. Its only the fourth time I have asked him - his answer is "he did not think I was serious!" - things have gotten better for diagnosis but the fight goes on! It wears you down but you keep going for the sake of your chidren. I think you always feel guilt as a parent, because you think I should have fought harder! Regards CarolJ

I contacted Alexandra Harris but at the moment the legal funding has been withdrawn for the cases. Have you been on the JABs website, it explains about it there. Since no funding they are not taking on any more cases - they have also stopped the research that investigating the cases. I am trying to build up medical evidence of my own at the moment and just hope that the legal aid board will reconsider their decision. In USA cases are successful but I can't help thinking with things like BSE and Gulf War Syndrome I find it hard to trust what I am told by officials. I have have emails from GPs and scientists who have researched blood/brain barrier and they all seem to think there is a link. I can only go by what I have seen in my own children and my son's reaction was like a slap in the face. I felt that my trust in the health profession has been betrayed. I have asked four times for a MRI brain scan to see if my son has brain damage. I think my son's peadiatrican finally got the message on the last visit because I was a very angry mum - I've always thought "they know best" but they dont. Parents know their children best and need to be listened to. Anyway, that's enough of that, I could go on all night and bore the pants of you! My kids are happy and apart from bowel problems are realtively healthy. There are children with a lot worse problems so I can grateful for small mercies. My boy is a character and believe me he always brings a smile to my face, my little girl could whinge for England! Regards CarolJx

- Diagnosis at 19 (did you have to fight for a long time?) - Emma was diagnosed as 3 1/2 and Scott at 2 - I must admit I jumped on the powers that be with scott because I knew something had gone wrong. peadiatrician was reluctant to diagnose him but I insisted - mums know their kids. He fitted the spectrum like a glove. I am convinced his sister has AS (her diagnosis is on the spectrum) but she is higher functionining. She has a delay of about 3 years in her speech and language. When did you first notice something was wrong with your son if you don't mind me asking?

Thanks Nellie, if I had not witnessed the dramatic changes in my son I think I would have gone on a birth or hereditary link - I think it is a genetic predispoition to a reaction (one man's poison theory). Because of my daughter I watched my son and never relaxed for a long time (began to relax at about 12 months). I had conversations with childminders friends and relatives about my worrys for Emma and I remember people saying - at least you don't need to worry about Scott - he's fine. Ironically I used to think I hope Scott won't feel as if he needs to look after his sister when they both got older (you know sometimes you think about the future). All I keep thinking is that if I had linked Emma's problems sooner Scott would be fine! Scott has bowel problems which I am currently trying to get a cofnirmed diagnosis. I am paying for a test from university of sunderland which measures the peptide levels in his urine. In fact I am getting them both tested and have asked the health visitor to monitor Scott and I want copies of every kept on their medical records. Anyway what is done is done, I can't change the past - I just find it frustrating the way we have to fight for everything, even basic services. My son is not high functionining enough for the only autistic unit in our borough and they want to send him out of borough to go to school! It seems its one thing after another. Are the majority of people on this site aspergers because the posts I have been reading seem to suggest high functioning ASD's?

Hello Bid and thanks again for the recommendation to the site. It looks like a pretty friendly place. Since giving up work I am trying to find things to keep me sane and the internet has kept my brain from turning to mush. Its great to talk to others in the same position. I think the problem is that although I have many friends with children with special needs we all find it difficult to get together because of the limitations of our children and when I have my kids with me, especailly my boy all conversation goes out of the window as my son monopolises my attention as I am constantly tearing around after him. Its like he's stuck in that baby stage (you know when they first learn to walk and you have to follow them around). The only problem is he is superfast - keeps me fit though!

- Jester or Bid - I am confused - don't do this to me - it does not take a lot to confuse me. Hello to both of you! Shall I call you Jester or Bid?

Hi Jester, and thanks for the recommendation. I certainly agree with you about the way in which alot of pro-mmrs seem to take it upon themselves to try and persuade us that we are wrong - I suppose unless you see it happen to your own child it is hard to believe. Did you see on "This Morning - Fern and (don't know his name) my sister in law phoned me. Had a couple of kids on there that had had measles. What I did not quite understand is that apparently they had had the 1st MMR but not booster - how did they contract measles. I caught tail end - would love to know what the full story was.

Well, no blood - my daughter does like to exagerate a scream - loves getting her brother into trouble! She had changed the TV channel and my boy obviously did not like her choice of program. She makes me laugh, she sits with the remote in her hand - her and her dad fight all the time over it. She hides it from him <'> . Do you all have ASD children? CarolJ

We were giving 2 hours a week - only after I had phoned up social services and told them to come and get my son as I was exhausted with no sleep and could not cope anymore! Have not seen the "Carer" since after Xmas - although he did not change nappies etc - so we would have to wait in in case he needed to bring my boy back! Local services are stretched to breaking point at the moment, I was told to get anti-depressants from the Doctors by social services (must admit nothing but praise for Prozac - it has saved my boy's life!) - Have also given up smoking (very difficult at 3.30am with nerves worn to a frazzle!) but my son is so funny as he does the craziest things! Will enlighten but have to go now as he is hitting his sister over the head! Full scale riot going on downstairs! Take care and thanks for the welcome. CarolJ

I have 2 children with developmental problems. My daughter I had an assisted birth (ventouse?) long labour but apart from her being a little jaundiced - she seemed fine. I breast fed and she seemed to make great progress on her developmental milestones, she had a problem with with vomitting when I put her onto formula milk but she seemed okay. She had MMR at 12 months and had a temperature for a couple of days. She seemed withdrawn and screamed alot. I put it down a phase and carried on. She did not talk very much although she had only ever used single words but I noticed she did not appear to understand language ie juice or dinner. Eventually she started playgroup - she cried alot the first day I left her but apart from that - she was shy she seemed to be making friends and smiled and gave eye contact. I then took her for her booster MMR. She again developed a high temperature and a rash. She became withdrawn, screamed constantly, lost toilet skills (kept having accidents) and the playgroup eventually expressed concerns about her. Up until then I had just thought it was a phase. She was eventually statemented and diagnosed with Oppositional Definance Disorder, speech and lanuauge problems, elective mutism and learning difficulties. As she was my first child I thought it may have been her birth or was just one of those things. With my little boy it was a textbook pregnancy, I went into hosptial at 8.30am and was home by 3.00pm with him. No problems. He seemed a very inquisitive nosey little mite and was a joy to take care of. I fell in love with him straight away. Because of the problems I had had with his sister it was always at the back of mind (could this be genetic). I soon forgot those worries as he progressed ahead of his milestones. He was a happy, responsive, cheeky little chap, he walked at 10 months, spoke his first words at 9 months, pointed at objects "wats da" there was no stopping him. If you said "bath time" he would run to the bathroom repeating "bath" - in fact I would tell him to shut up as he was such a chatterbox. He had a developmental test 2 weeks before his 1st and only MMR and passed with flying colours! He had his MMR when he was 15 months old. I had heard in the media about possible problems so I asked my health visitor who told me that it was all "nonsense" and there was nothing to worry about. She said my son was a fine healthy little boy - there is no risk. I remember saying "I could not cope with another child with special needs" - again she said don't worry. Scott had his MMR. Within 2 days he had developed a really high temperature. I phoned the surgery and was told to give him calpol (it was a perfectly normal reaction). He was screaming and unresponsive - I could not comfort him. His temperature eventually went down but he seemed to develop a raging thirst and seemed to suffer from dirroeah alot. He also seemed quieter (not talking) and did not respond to all the normal things he seemed to have enjoyed previously. He seemed withdrawn and started rocking backwards and forwards and banging his head against things. He started hand-flapping and stopped responding to simple things like his own name. I phoned the health visitor and told her my concerns. She said "its just a phase - the screaming and tantrums are quite normal". I insisted that she come and see him - at 18 months he had another developmental test - the health visitor seemed shocked (I remember her face). She said it must be a phase and not to worry. They all go through this. I watched my little boy like a hawk because of my daughter. Something in my children (genetic) reacted to that MMR. Today my son has been diagnosed severely autistic, no language, still in nappies (he is 4 3/4)- he still does not know his own name. His language capabilities have been put at less than 9 months old - he also has bowel problems. I believe that just as some people are allergic to certain things so some children have a genetic predisposition to reaction against medicines (ie penicillin) - this also applies to vaccines. I can only go by what I witnessed in my children. Noone yet has explained why my son regressed so dramatically and changed within a very short space of time. I cannot accept that these things just happen! Believe me I tried but the more I find out about other children who have suffered similar problems (the stories all read with frightening similarity) then I feel that I am not going crazy. I have friends and family (who knew scott prior) and video tape and pictures of my son, with my daughter I was never sure and could not think why she had problems - I just accepted that it was one of those things - it took the vaccination of my son to realise what had happened to my daughter! Sorry this is such a long post but in order to understand my views, I feel I have to explain the reasons why. CarolJ

Hi folks, my name is Carol - was recommended to this site by "mother" on JABS. I have two kids boy 4 3/4 and a girl almost 8. My daughter has learning delay, oppositional defiance disorder and elective mutism (chooses not to talk) - although she has a problem with language understanding and speaking. She has been statemented and attends a mainstream school - she also has bowel problems. My little boy has severe ASD/ADHD and bowel problems. He has no lanuage, is in nappies - but physically he's as fast as a whippet! I spend most of my days running around after him trying to keep him out of trouble. He has absolutely no fear of anything and does not recognise danger. He also has poor pain response and does not seem to feel extreme temperature. He will put his hand on a hot radiator or oven door or sit in a cold puddle in the garden when it is snowing naked! He hates wearing clothes!! I have to keep all windows and doors locked as well as make sure he does not do things like turn the cooker on or the taps on! He climbs on the sides in the kitchen and turns the kitchen taps on. We have an open plan house so we can't stop him gaining access. I am trying to teach him singalong and PECS but he is not yet responding. His language capabilities have been assessed at less than 9 months. I have recently stopped working full time as my childminder could not cope and my other half stayed at home for a while but it drove him crazy. I was actually quite ill and exhausted - working full time and not sleeping (as my son cat-naps) he does not sleep all night and runs around the house until the wee small hours! I am now a full-time mum and would like to chat to other and get some tips on how you all manage to get through the night without commiting child abuse! I think I have cornered the market on "pro-plus" "redbull" "black coffee" "coke" (from a bottle!!!) - caffine addict!!!!! I get physical aid from matchsticks, although they can give you splinters! Hubbie always says I'll watch him and I find hubbie snoring and my boy on the rampage. My daughter is an angel and is placid compared to her brother. Hey, I am sure you all get the picture - sorry to go on - CarolJ