CarolJ

Hi guys I totally see your point on this. Firstly Lucas, the answer to the question is if my son was able to communicate like you as a high functioner then I would be over the moon. As long as he was happy being him I would be happy and comfortable being him and love him for who and what he is. However, I see the frustration my son has because he is unable to communicate, the constant dirroeah he has, he hits his head and I often wonder (has he got a headache), he gets many unexplained high temperatures and non specific illnesses and he is never able to tell me he is in pain. I care for him more through instinct. His pain is my pain, I know he is suffering but he is unable to tell me, that is hard to see. Having my son as a neurotypical is not an option is it? Yet my son is affectionate - I sense things about my son on a level which is hard to explain. I know things about him when I am not even with him. Perhaps its a level of attachment that has developed because of his autism or maybe I just need locking up (cue men in white coats!). If my son were to grow up and was able to adapt to life, hold down a job, have a say in his own future have his dignity - then I would be a proud mum. Lucas, its not about taking away his autism, because if he were destined to be autistic then so be it, but surely noone would want an individual to go through life with no say in their own future. That is not what I want for my son and I dont think it is what he would want either. My little girl is lovely and guess what I would not change her because she is what she is, who cares if she is neurotypical or autistic she is what she is. However, if she is in pain (gets lots of constpitation) and I can make things better for her then I will try my utmost. Autism alone does not cause learning difficulties does it? If I removed my kids autism, would they be neurotypicals with learning difficulties? I would take away their learning difficulties tomorrow and love em for who and what they are. I thought I had given birth to neurotypical kids, just like me - the pronouncement of the word autism means different things to different people - I was devasted when I realised what had happened to my son. Its only by coming onto sites like this and speaking to higher functioning autists I have realised that autists are just like everyone else, except that they are autistic - I have started to understand what it is to be autistic (in my Neurotypical way). Secondly look at the input of autists throughout history - Albert Einstein, etc. etc. etc. - how on earth can anyone have a bleak view of these individuals who have shaped mankind's history. I have read Michelle Dawsons correspondence with the Candian Autism Society and I felt the frustration and really and truly cannot understand why autistic adults are not part of these organisations? I always (in my ignorance) assumed that autists were a part of these organisations. If not why not? Noone is trying to change autism (that is impossible) surely we are all together in this parents and high functioning autists? We all want the best for our kids who will one day be the autistic adults of tomorrow. One day I hope my Emma and scottie will be posting just like Lucas and Amy do. Okay, rant over now, sorry its late - brain has given up on me. I think some lines of communication need to be opened up so everyone has a say. I am sure that both you Lucas and Amy want the best for all autists everywhere!

Hiya all, I was sent this press release regarding a new clinic which is to open in December 2004 in USA. Take care all. ==============================================

I had a an in-depth scan at 5 months gestation with scottie - cos I had missed the original nucal scan for Downs and things were playing on my mind. Doctor aksed if we wanted to know the sex, I said yes and they told me he was a girl!!! LOL! When he was born I remember looking twice at him saying, she's got b***s! Scott came home in a pink babygro, wrapped in a pink blanket. I suppose this was an example where they can get it wrong so that is why I am not a fan of pre-natal screening. We were in shock for about a week after he was born!

Aside from DS babies being aborted - babies are also aborted for reasons such as cleft pallettes. Not a fan of pre-screening unborn babies. I declined to have amniocentisis (1 per cent. change of misscarriage) with scottie cos I had missed a nucal scan at 11-12 weeks -which had not been out when I was having Emma -because i had missed this earlier scan, I started worrying!!!!! - but my scottie was fine. It would be a cheaper option as far as research goes Lucas - its sad and scarey.

Lucas if you feel he is innocent then there is definitely something that needs to be doen about it! As I said before I dont have any real insight into this case Lucas, obviously you know much more than me. There have been loads of miscarriages of justice so I for one would never dismiss any possibilities. If this lad is innocent then real perpetrator has to be bought to justice for this crime!!!! Take care

I certainly feel for both the families in this case Jester. The backlash may also help to highlight the problems that many AS people have in society and perhaps increase awareness of the problems they endure. I too have lashed out when provoked - just because this boy had AS I cant see that made any difference other than it made him a target for teasing. And you are so right Jester the majority of crimes are committed by NTs! This case had made me feel so sad for all those who have been affected.

Lucas I have just read a couple of articles about this but all I can say how tragic. It seemed Rosie had teased Paul and grabbed his can and ran off with it, so that is why it was found in the same room. http://news.bbc.co.uk/1/hi/england/leicest...ire/3958699.stm I have also read there were reports of two incidents involving young girls before this. I dont know the full background of the case and trial proceedings, but a young girl lost her life, she may have teased him, but she did not deserve to die. The tragedy is that a young girl is now dead and this boy is serving a murder sentence. As a mother of a young girl and children with ASDs I can see both aspects of this. Perhaps earlier threads on here of ASDs being integrated into mainstream, where their problems will be highlighted and exacerbated and the public perception will be that they are a danger and could be locked up. By highlighting cases like this would reinforce that perception. That is something that really worries me. I really dont know enough about this case to have a firm opinion other than this is a terrible tragedy.

Mmmm interesting theory although I would be very reluctant to use my cats or even poor Robbie as demonstration. Scott loves loud bangs, explosions and things of that general nature and would love to see something blown to kingdom come! However, your suggestion has given me food for thought. How about an remote controlled electronically activated device that fits snuggly in nappy. Something that could not be removed. This could delivery an zap of shocking proportions to temporarily disable the wearer. I was thinking more along the lines of John rather than scott. When he standing in the pub and he told me he would be home 2 hours ago I could activate device and get the so n so to dance and spill his pint at the same time! Thanks for the idea BD.

Harumph - BD and Lucas. There's me trying to comfort Lucas - durrh! Thanks Helen - it all makes perfect sense now. I am officially the VILLAGE IDIOT! Okay no emoction with a dunces hat on! D I would however like to add in my defence - some people dont get time to watch TV - so huh!

Amy, if you look at the thread on ABA, my gut feeling is that by being forced to deny one's nature will backfire and possibly lead to greater mental health problems later in life. Although I would do everythign I could to try and help my kids learn to cope with their autism and life, I am not 100 per cent. sure that their problems are due to autism alone. Sorry, if I dont make sense but it makes sense to me (I think). No comments BD

Oi BD I saw the bit about "sad and lonely" so I gave lucas a hug Yes, I often miss a point, but hey at least I mean well!!!!! <'> Lucas

Lucas <'>

Part of the reason while I did not vote in this poll is that Autism does not necessarily cause learning difficulties which both of my children have. If I were to remove their autism would the learning difficulties remain? Lucas is right in that the label of autism does cause a stigma. This depends on a person's perception of autism. I come across of range of reactions to my children's autism. Pity (I am sorry - doh!), ignorance, a stereotypical view gained from a film like Rainman, even disbelief that the condition is "made up" somehow to explain a difficult child not unlike some doctor once said about ADHD or that my children are genius savants! When it comes to my children I want them to have independence and quality of life. They are autistic and I cannot change that but if I could I would remove the limitations that cause them problems every day of their lives. My kids are autistic that does not mean they should be de-valued by society. NT parents of autistic kids do share the frustrations that autists feel. Its very difficult to describe the feelings a parent has when their child is rejected, dismissed, ignored or citicised by others (NT parents and peers) even family and professionals are guilty of this. A mixture of hurt, anger and disgust because its directed towards your child. None of us made the world but we all have to live in it. Society needs to change its attitude towards anyone who is different be it race, culture, sexual orientation or labled with a disability. All we can do is keep pushing for this acceptance. One day when a person says "I am autistic" society will say okay, no worries -and your point is? Martin Luther King once said "I have a dream". Okay, having been up since 3.00am I have rambled a little here. Apologise if I have made no sense but hey, why change the habits of a lifetime! Take care all, whatever we are all in this together. NT parents have autism by proxy!

Okay, yesterday he found another way out - got through the chain link fence and hedge into next door's garden. I had checked on him 30 seconds before, turned to see to Emma when I looked back 30 seconds later he had gone!!!! I am seriously thinking of CCTV, employing securicor, electric fences and upping my dosage of prozac. Start of half term hols today (help!"!!)

Curra <'> <'> <'> ditto what you said.

If you asked me would I change my kids then the answer is no! But if you asked me if I wanted to change the following: 1. Do I want my son to talk - yes I would. 2. Do I want my son to be able to dress him self - yes I would. 3. Do I want my son to be able to feed himsef - Yes I would. 4. Do I want my son to understand the words I say to him - yes I would. 5. Do I want my son to recognise potenital lethal dangers - yes I would. 6. Do Iwant my son to have a chance of an independent life - yes I would. 7. Do I want my son to be able to make decisions about his own life - yes I would. 8. Would I like the chance to ask my son how he feels about his autism - yes I would. 9. Would I like my son to be the way he was before he regressed - yet I would! If I could turn the clock back I certainly would have done things very differently. My son has low functioning autism. Yet I would not change him - but I would take away tomorrow all that stops him from living a full and happy life. And removes the frustration I know he feels with the limitations placed upon him out of necesscity. My daughter as yet is not aware of her autism as we have not yet had confirmed diagnosis. My daughter is higher functioning but she also has learning difficlties and speech & language problems. Again, would I turn the clocks back with my baby girl, the answer is yes indeed. I would love her to be free of her difficulties but I would not change her for the world. I have not voted in this poll because to remove my child's autism is not an option. I would however remove all the problems that result from their autism. In that if it were possible to reverse the damage that was caused to them by MMR then the answer is - Yes I would. I just want my kids to be happy within themselves and not have to rely on me for every little thing they need - I think above all their dignity and independence of spirit and quality of life is important. So I would definitely do everything I could to ensure this.

cheers bid, it happened a couple of weeks ago and I was so shaken by it I did not even post. Elefan knew about it though. However, scott lives to escape another day!

Mawbrew and Spike <'> <'> Well, it happened again a couple of weeks ago. This time under the side gate, there is a gap at the bottom he managed to squeeze through! This time he was found on a traffic island in a main road by some motorists who stopped and grabbed him and phoned the police. I had telephoned the police and ran down the road in the opposite direction, hysterical, no shoes etc! John was driving around and spotted the police and stopped and lo and behold scottie was sitting in the back of the cops car oblivious, not even fazed! A policeman was trying to ask him his name (he is non-verbal). He was gone for about 10-15 minutes in total but it seemed like a lifetime! I have asked for an Occupational Therapist to come round the house to try and suggest ways of making it scottie proof. That boy will be the death of me ! I watch him constantly now. He is still trying to negotiate the back wall! He has gotten a taste for freedom now. He just needs a bit of road sense!

I asked for referral to gastroenterlogist about scotties dirroeah etc. had bloods taken (twice) in May. yesterday heard the results. I wanted to acertain if scott had food intolerances to gluten and casein. Consultant said there was no evidence of coelic disease. This means I will not be able to get prescriptions for g/f food. I said about "leaky gut" and peptides. He basically called this "bad science". I said to him about testing for peptide levels and about the successes many parents had had on the g/f+c/f diet. He just said there is no evidnece! I said would he recommend me removing g and c from diet. He said no! Okay, since it took so long for results I am not convinced of this. It seems homeopathy is my next stop to test for intolerances. Or should I insist on another test! Maybe I need to ask them to look for something else! Has anyone else's child had to have a test done by NHS in order to get prescriptions for food?

"Oh wouldnt it be luv-ver-lee" in the words of the immortal eliza dolittle, apparently George Bernard shaw was AS! Would it be lovely if they could look at children like mine who regressed following MMR vaccine and find out exactly why it happened, what pre-disposition caused it to happen and then pre-screen all future vacinees so parents did not have this worry! Until then my kids are never having another vaccine. Vitamin A is something recommended to me. It is useful for both having a vaccine and an illness ie measles etc. It is an anti-oxidant, a compound that may protect against disease by neutralizing unstable oxygen molecules, called free radicals, within the body. This vitamin is involved in the night vision, growth, cell differentiation and reproduction. It also maintains the health of the skin (prevents acne and dermatitis) and surface tissues especially those with mucous linings. These linings are the body first defense against infection that is why vitamin A helps fight colds and infections, particularly in the mucous membranes of the eyes, ear, nose, throat, lungs and bladder. It may also reduce breast cancer. But reinforcing mucous linings it is believed to stop secondary infections where virus crosses over to brain etc. Secondary infections or complications are the usually the life threatening or dangerous conditions associated with these illnesses. Does this make sense? It seems that many autistic kids, especially if they have gut problems dont absorb enough vitamin A (and other vitamins) from foods. Take look at theories of autism: http://www.healing-arts.org/children/autis...htm#Vitamin%20A scroll down to "Vitamin A Deficiency and Autism" another interesting study is: http://66.70.140.217/y/autism_vitA.html Vitamin A is just a suggestion Wendy, but I do know how parents feel. You feel so unsure and confused over this issue, perhaps there is something behind the humble vitamin after all.

Hi Nells, funnily enough I was having this same conversation on Wednesday. I had a meeting with ed psyche and autism coordiantor and Senco at Emma's school. They asked me why I thought Emma was on the spectrum. Okay firstly Ed Psych told me Emma gave him good eye contact - although not prolonged! Okay, so does scottie give good eye contact, next question! Many kids on the spectrum do give good eye contact. If I stare at Emma too long she tells me to "stop staring" she hates it. She hates people staring at her. Is this on the spectrum. He then said he feels she has good social skills in that he saw Emma smiling at other children. I tried to explain about learned responses, in that Emma's smile is not a genuine smile. She often smiles when she is unsure what to do, sometimes in response to a direct question as she knows a smile is accepted, its a coping mechanism. I then explained how Emma is in that she appears to be placid because often she is not sure what is expected of her. She often appears to be giving eye contact but in fact she is looking through you rather than at you. I got the feeling he was assessing me because I made a point of staring straight into his eyes when I was talking and then demonstrated what Emma did in that she does not focus. A couple of people have suggested a squint but I know with Emma it is a coping mechanism. I am now compling a report, what really made me uncomfortable is that every time I made an observation about Emma they both looked at the Senco as if to say, is that right? Senco was nodding. I said Emma was placid at school but at home was a different story. The autism coordinator smiled at this, I presume she is familiar with the jekel & hyde scenario. Ed Psych said to wait and observe Emma. Here I lost it I said I think you have had long enough. Her DX is wrong. She is falling further behind her peers. But Ed Psyche said diagnosis would have to be medical, so back to peadiatrician. Ever get the feeling you are running in circles and getting nowhere fast?

Kevin I dont think anyone has ever suggested MMR is the sole cause of autism. Andrew Wakefield found the measles virus in the guts and brain fluid of children who had a condiiton called Late-Onset Autism (Autistic Enterocolitis) who had no history of natural infection with measles. All had become or developed gut and behavioural, regressed following MMR. Many developed seizures. The causes of autism are indeed varied, genetics, birth trauma, congenital infection during pregnancy (ie Rubella), exposure to toxins ie mercury, head trauma, medical intervention or serious viral infection. My two children regressed following MMR. My son stopped developing, had a high fever, rash, and screamed constantly he regressed. He now has no speech or understanding of language, is still in nappies and has gut problems. This is clearly not apsergers. It is a degenerative condition. My son is not makign progress at all. He learns something and unlearns it. He had MRI scan which did not show any abnormalities which could account for the problems he has. My daughter regressed twice, once at 12 months and once at aged 4.5years where she lost problems with coordination, kept falling etc. All regressions followed in the wake of vaccination with MMR. Measles,mumps and rubella can cause regressive autism, enchaphalitis (which is known to be a side effect of vaccination) can cause regressive autism, toxins in vaccinations and the environment and genetic suceptibility can all work to push some vulnerable children to regress. As some autists are sensitive to certain things. Perphaps that inborn sensitivity is what makes for a catasprohic regression. I have heard people say with regressive autism its like a "computer crash". Firstly my son is a human not a machine. And secondly, what can cause a computer to crash, hardware failure (not in my sons case he has no brain damage) or a virus!!! Too many parents are telling the same stories over and over again yet noone looks at these kids. And why do the government spend so much money trying to dispprove the link! It was rubbish why take it so seriously? Why do they refuse to look at these children and find out exactly what did happen. Every one of the studies pointing to no link is epidimological in nature and has never examined one autistic child. They go by medical records GPRD, which are often inaccurate and dont often list when onset of symptoms started. Indeed many studies survey populations looking at immediate serious reaction, ie seizures anphalatic shock. This however does not explain "regression" and onset of physical symptoms like seziure and bowel diseases in infants and children who had up until time of vaccination had no problems with reaching milestones, developmental goals. Aspergers has always been around, albert einstein, issac newton, george bernard shaw, michael angelo etc. were genius savants. I dont think we would be where we are today if it werent for autists. However, my son does not fit into the genius catagory. He is a very challenged little boy who does not even respond to his own name or recognise himself in the mirror or photographs. All I know is that both my children had a reaction to the MMR and regressed. Video tape, photographs, child development records all show massive regression and onset of symptoms. It seems many high functioning autists in the autistic community dispute that vaccination can cause autism. I think what we have to remember is that these children who regress are different from born high functioning aspergers individuals. So when a parent like myself says my child became autistic followign MMR, we are in fact saying that my child regressed following MMR, developed symptoms of bowel disease and seizures and was subsequently given diagnosis of low functioning autism not Aspergers. I think it needs to made clear just what type of autism we are talking about with regards to vaccine damage. Anglemans, Rett syndrome, fragile X and other genetic conditions have been identified as causes of autism, my kids have had tests but none of these genetics are the problem with my kids. We have absolutely no history of autism or related conditions in our extended family. And I dont believe that aspergers is caused by a "mutant" gene. Everyone has autistic traits in some individuals where an individual has so many of the traits it results in someone with aspergers then diagnosis is given. This is the reason why I dont believe the gene for aspergers will ever be found. Aspergers individuals are as differnet from each other as everyone else. I dont think of a born high functioning aspergers individual as "damaged", yet my son is clearly damaged. Does this make sense? As an aspergers individual do you want a cause for aspergers found? I want to know why my children regressed so severely after MMR. That is not the same thing. Dont worry no money is spent on looking at these kids, yet loads of money it seems is put into disproving a link, what a waste and I totally agree with you because this is political spin aimed at convincing parents to vaccinate their kids. I want someone to look at those who have suffered a regresion and find out what it is in common that these kids have, then use this knowledge to pre-screen future infants to try and make vaccination safer for all concerned. Vaccine reaction happens, its a fact, yet its far easier to ignore or dismiss reactions because not everyone becomes autistic following MMR, in that it is safe for the majority but there is a minority who suffer devasting injuries from it.

Mercury poisioning was once termed "Mad Hatters Disease", in the last century. This is probably where they have coined the phrase. MAD HATTER SYNDROME What is the 'mad hatter syndrome'? The term "mad as a hatter" has been inextricably linked to the madcap milliner in Lewis Carrol's classic children's book of 1865 Alice in Wonderland. It actually relates to a disease peculiar to the hat-making industry of the nineteenth century. A mercury solution was commonly used during the process of turning fur into felt, causing the hatters to breathe in the fumes of this highly toxic metal, a situation exacerbated by the poor ventilation of most of the workshops. This led in turn to an accumulation of mercury in the workers bodies, resulting in symptoms such as trembling, loss of co-ordination, slurred speech, loosening of teeth, memory loss, depression, irritability and anxiety - the "mad hatter syndrome"! The phrase is still used today to describe the effects of mercury poisoning, albeit from other sources. Mercury and industry- a marriage made in hell! Mercury (also known as quicksilver) is one of the most toxic substances known to humanity. Despite this it is still in use industrially. Indeed, most modern day exposure to mercury comes from industrial pollution and dental amalgam fillings. It is released from burning fossil fuels, coal combustors, lead smelters and chlorine producers as well as being used in the paint, pesticide, gold mining and electrical industries (in the latter it is utilised in the production of thermometers, barometers, fluorescent tubes and alkaline batteries). The knock on effect of this continual spewing out of mercury into the environment has been increased contamination of our oceans, lakes, rivers, etc. Methylmercury is formed when mercury settles in the sediments of the Earth's water systems, where it combines with methogenic bacteria to produce a new type of mercury that binds to protein in the small fish that eat the methylmercury-tainted plants. The concentration of methylmercury increases the further it travels up the food chain, thus the larger the fish the higher the risk of pollution. Fish consumption has risen dramatically in recent years due to widespread media coverage of its health benefits, in particular the high concentration of low saturated fatty acids on offer. Thus, it is paramount that the fish consumed come from the cleanest waters possible - not an easy task in these environmentally polluted times. The governments of the world should be lobbied continuously in a bid to curtail manufacturing plants from dumping mercury and other toxic wastes into our waters before it is too late! The dental amalgam debate - something to chew over The debate still rages as to the safety of amalgam dental fillings. According to the World Health Organisation these so-called 'silver fillings' are a major source of mercury exposure. They have already been banned in countries such as Sweden, Germany and Denmark, and an increasing number of dental surgeons in other countries are now turning to mercury-free alternatives. Amalgam dental fillings are comprised of at least 50% mercury, 35% silver, 13-9% tin and 6%-2% copper, with a trace of zinc thrown in for good measure. The mercury releases vapour on a daily basis, the amount increasing the more we chew, brush our teeth or eat hot/acidic/salty food. This chronic exposure to mercury has been linked to various degenerative and autoimmune disorders such as multiple sclerosis, rheumatoid arthritis, colitis and lupus erythematosis. Mercury is a cumulative poison and particularly affects the brain and nervous system. Symptoms of mercury poisoning are all encompassing, ranging from neurological complaints (headaches, dizziness, tremors, etc.) and inflammatory/immunological conditions. (Chronic Fatigue Syndrome, allergies, asthma, etc.) to psychological disorders (memory loss, mood swings, anxiety, depression, mental confusion, etc.), gastrointestinal problems (diarrhoea, constipation, IBS, etc.) and so on. Mercury does not show up in urine or blood samples. However, hair analysis will detect toxic levels of mercury. A sample of the hair can be sent by post to one of the many laboratories that specialise in such matters. It is best to use a laboratory that has been recommended by your healthcare professional. Treatment strategies Nutritional supplements can be used to leech out mercury and other toxic heavy metal. This process is known as chelation therapy, whereby a chelating agent specific to the metal involved attaches itself to the offending article and then removes it from the bloodstream. Sodium alginate (found in seaweed), apple pectin and Vitamin C are excellent natural chelators. Calcium, magnesium, zinc and selenium may be used to neutralise the effect of mercury, or prevent its uptake in the first place. Supplements such as glutathione, L-methionine, L-cysteine and garlic can be used to detoxify the body. These days there also a number of supplements on the market especially designed to rid the body of heavy metals. They contain a variety of ingredients including the above. The ideal diet should be organic, with plenty of fibre and distilled water to enable proper elimination of toxins. Sulphur-containing foods such as onions and beans are recommended to protect the body against poisonous substances. If dental fillings are the cause of mercury toxicity it is advisable to have them removed by a dentist who advocates the amalgam-free approach.

Elefan I can do better than that! I will hide the sky remote, his stellas artois! I know a man's weak spots!

Err why would that be ridiculous BD? Binoculars are also very use for spying on neighbours. Doing your bit for queen and country in case you have a cell of terrorists or something in the vicinity? I defy anyone here who has ever had a pair that they have never looked at people's windows - just to see how they decorated their bedroom, give yourself a few decorating ideas - ahem! There I will stop. ----------------------- Helen, I am sure you r right, pooks is probably nursing frank after his encounter with the mutant ninja dog turd.