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Pre-seminar discussion
Author : System, 2 Oct 2004 14:36
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A child with no communication
Author : Carol Johnston, 4 Oct 2004 11:21
I have a son of almost 5 years old. He is totally non-verbal, suffers bowel problems, does not sleep, is violent the list is endless. Anyway I feel as if I cannot cope with him. Does it get any better. Will he ever learn to speak or communicate. I have tried PECs, sign but nothing is working. He is intelligent as he can problem solve but he a law unto himself. I cannot communicate with him, he is destructive and violent. I am losing the ability to care for him. I dont want to put him into care but I feel as if I have no choice. I receive no support because local services are under such pressures. He is now at school but this has made his behaviour worse. I undertnad you work on the genetics of autism. What about environmental. My son was not born like this. He had language and understanding but followign vaccination with Meng C and 2 and a half weeks later the MMR he regressed almost immediately lost ability to recognise himself in the mirror, he stopped talking, stopped responding, developed dirroeah a constant thirst, he screamed for almost six months solidly after MMR. Many Aspergers infants develop ahead of their peers and are very very bright. Aspergers has a strong genetic basis. My son has severe autism and is extremely low functioning. He cannot feed himself without choking he is in nappies. MRI scan has come back "normal". Presumably a normal brain means a normal child. Why is my son like this? What is wrong with him? I saw my son deteriorate after vaccination. Why are these children not looked at? Why do reserachers continually deny the involvment of vaccines and mercury, aluminium and the effects it can have on an infant's brain. I had no dental treatment whilst pregnant, took no drugs or drank alcholhol, I took folic acid, did not eat tinned fish, and breast fed. My son was born at term, no complications I went into labour at 8.00am had him at 12.30pm and was home by 3.00pm. There is no history of autism in extended family. Why are these so called genes becomign so predominant now? Bradstreet et al found the vaccine strain of the measles virus in brains of autistic children. I know my son must have the virus in his brain, yet nooone will look at him. His cycle of constipation, high temperature, vomiting, dirroeah is constantly dismissed as tummy bug. Yet no one else gets it, these things are highly contageous. The only thing I am offered are medicines to stop the dirroehah or laxatives! Why wont noone listen to what parents are saying. My son had a developmental test 2 weeks before MMR. He passed with no concerns and was noted to be using 2 word sentences, pointing, using social expressions ie smiling, following verbal requests. That was gone by 18 months of age. My son is miserable. I am so angry that you all choose to ignore these kids and look at genetics as a sole basis for causation of autism. Many higher functioning aspergers individuals do not want a cure found, because they accept their autism as part of what they are. However, a child like my son is very ill and definitely needs help. You are looking in the wrong place. Look at these children and find out what is wrong with them. Opening up the spectrum has lead to confusion as to what autism actually entails. Albert Einstein was not disabled. Bill Gates is believed to have autism yet he is very successful. Just what are scientists trying to cure these geniuses of? Yet why are children like my son ignored when I have video tape, photographs and child development reocrds which all point to a rapid deterioration in my son. I am sick to death of peple telling me its "genetic". Since autiistic individuals have sensitives to certain things perhaps by giving them vaccines you harm them. I am fed up of being ignored and dimissed. My son regressed after his vaccines there is nothign else that happened to him. Why did this happen? |
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Re:
Author : Claire, 4 Oct 2004 11:30
As a non-expert, I can't answer any of your questions and I hope that Anthony Bailey might be able to. What jumped out at me from reading what you say is purely what sounds like the lack of support that you are receiving. Do you have a social worker? - if not, get one! - relay all of this to him / her, and if they don't give you any support then it's a fallacy!
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Author : Amanda, 4 Oct 2004 11:47
As a parent of two autistic children I sympathise wholeheartedly with your frustraion and lack of support issues. Unfortunately we all, as parents, have to fight for help and support for our children every step of the way but it is worth it. I have had great success with both my children by putting them on a gluten, milk and additive free diet. They don't have any colours, natural or otherwise, orany artificial ingredients. This means they now have more regular bowl movements and the episodes of screaming and sleepless nights are far fewer. Give it a go but do it gradually, hopefully with the help of a dietician as good as ours!
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Carole's child
Author : alex, 4 Oct 2004 14:47
Before reading your message, I had written many of the things you write of. (In response to the genes issue, Prof Bailey and Dalkeith.)
No prizes for saying you need pratical help.
Sometime back, parents of young very distressed children, such as your child sounds,managed to get a team of friends, neighbours and volunteers together to input into child's life.
This would also alleviate some of the practical issues for yourself and family - get others involved if you can.
Of vaccine damage, after more than 40 years of knowing of its presence, UK government has at last removed mercury from vaccines.
Of your child, de-tox of one sort or another might offer help - in USA, they seem to be optimistic of mercury de-tox.
Try not send your child away if at all possible.
USA on the 'net' seems to have many campaigning groups. People like Bernard Rimland, worth reading up on, and following some of the links.
I'm so very sorry about your child's distress and vaccine injury.
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chances of non-autistic sibling having autistic offspring
Author : Debbie Dayton, 4 Oct 2004 11:48
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Sleep disturbance in ASD/Aspergers & Autism
Author : Dr Jeremy Black (GP), 4 Oct 2004 13:50
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Asperger's but no difficulties in reading facial expression
Author : Laura, 4 Oct 2004 14:13
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Okay aside from genetics do you believe there are other factors at work here
Author : Carol Johnston, 4 Oct 2004 14:17
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Mercury - differences in connectivity between particular brain regions
Author : Dan, 4 Oct 2004 14:24
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Asperger's Sybdrome and Early Onset Bipolar Disorder
Author : Vicci Morris, 4 Oct 2004 14:39
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Why is there no assistance for adults with Asperger's Syndrome?
Author : Matthew, 4 Oct 2004 15:08
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Buying a property
Author : Sjöjungfru, 4 Oct 2004 17:11
Are there any sources of support for getting onto the property ladder? You only need to watch the numerous property programmes on TV to realise that even the most neurotypical of neurotypicals with supportive partners find buying a property very stressful. So what about people with Asperger syndrome? Is it assumed that if we can hold down a job we can jolly well get off our backsides and go it alone? Where are Kirstie and Phil for the autistic community?
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Biological causes of "tantrums" in Autism?
Author : , 4 Oct 2004 17:36
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Diet Intervention
Author : Pat, 4 Oct 2004 17:47
On behalf of a parent with a young adult son with autism: does diet intervention really have a beneficial effect? If so, what guidelines would you suggest when deciding which diet is best?
How effective are supplements? eg vitamin B6? I would appreciate it if you cold give us some direction. |
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aspergers
Author : susan booth, 4 Oct 2004 20:06
My son is 13 years old. He has had chronic bowel problems from birth. He has been treated with 30ml of Senakot for a number of years. I am increasingly concerned that this problem hasn't been resolved. My son will not even contemplate eradicating dairy from his diet. He is a huge fruit eater. I have been advised that he should have a biopsy to check the enzymes in his small and large intestine.
The thought of an injection causes my son to become extremely, stressed not allowing anyone near him. It has been suggested that I change from Senakot to Movicol.
Is there any advice you can give on how I can resolve this long-term and very upsetting condition which my son has to contend with?
Another point, my son also has sleep problems and takes 10mg of melatonin, however, this is becoming less and less effective and he can still be found awake at 2.00 a.m. Who would I need to speak to concerning sleep disturbances to find out the root causes?
Many thanks
S. Booth |
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Interaction beween genes and environment
Author : Margaret Collins, 4 Oct 2004 21:43
Dear Professor Bailey, long before I knew my son had autism I knew he had been exposed to high levels of lead in infancy (and probably before birth). We had hair analysis done after he developed Infantile Spasms. The results that came back showed we both had massive amounts of lead in our hair. I showed these to the GP who said hair analysis was unreliable, but ordered a blood test just to see. My baby's blood lead level at 10+ months corrected age was at twice the current paediatric reference level (and researchers into effects of lead on children's IQ and reading ability want the current reference level cut in half). This worrying finding was left "hanging in the air" - no-one in the NHS knew what to do with it. I was advised by the "alternative" organisation that had carried out the hair test to stop breastfeeding at once. I was given no advice by the NHS. Not long after I had stopped nursing, my son's hair lead and blood lead levels had both declined by about half. My son had been premature (although a good weight and with no apparent problems apart from jaundice) and had suffered a severe local adverse reaction to the first DTPHib (which he recieved at only two weeks corrected age). He suffered a severe general reaction to the second dose. His third dose of first year vaccines left out the pertussis element, but he still received 25mcg of mercury in the DT and possibly another 25mcg with the Hib. Unfortunately, it is known that the damaging effects of either lead or mercury are made much worse when they are both present. Do you know anyone in the UK looking into this sort of thing, please? Researchers in the US say that there is commonly a genetic problem found in autistic children which leads to impairment of (or total inability to) excrete heavy metals from the body. This sounds as though it could be very relevant in this case! (Why was he getting so much lead from me, too - a genetic weakness leading to it being stored in the bones and only excreted along with the calcium during prgnancy and lactation? - I still have frozen samples of milk, kept in case anyone wants to test their lead content some day). |
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Interaction beween genes and environment
Author : Margaret Collins, 4 Oct 2004 21:43
Dear Professor Bailey, long before I knew my son had autism I knew he had been exposed to high levels of lead in infancy (and probably before birth). We had hair analysis done after he developed Infantile Spasms. The results that came back showed we both had massive amounts of lead in our hair. I showed these to the GP who said hair analysis was unreliable, but ordered a blood test just to see. My baby's blood lead level at 10+ months corrected age was at twice the current paediatric reference level (and researchers into effects of lead on children's IQ and reading ability want the current reference level cut in half). This worrying finding was left "hanging in the air" - no-one in the NHS knew what to do with it. I was advised by the "alternative" organisation that had carried out the hair test to stop breastfeeding at once. I was given no advice by the NHS. Not long after I had stopped nursing, my son's hair lead and blood lead levels had both declined by about half. My son had been premature (although a good weight and with no apparent problems apart from jaundice) and had suffered a severe local adverse reaction to the first DTPHib (which he recieved at only two weeks corrected age). He suffered a severe general reaction to the second dose. His third dose of first year vaccines left out the pertussis element, but he still received 25mcg of mercury in the DT and possibly another 25mcg with the Hib. Unfortunately, it is known that the damaging effects of either lead or mercury are made much worse when they are both present. Do you know anyone in the UK looking into this sort of thing, please? Researchers in the US say that there is commonly a genetic problem found in autistic children which leads to impairment of (or total inability to) excrete heavy metals from the body. This sounds as though it could be very relevant in this case! (Why was he getting so much lead from me, too - a genetic weakness leading to it being stored in the bones and only excreted along with the calcium during prgnancy and lactation? - I still have frozen samples of milk, kept in case anyone wants to test their lead content some day). |
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Asperger's and Mood Disorder
Author : Alta Rens, 4 Oct 2004 21:46
I am working with a 12-year old male student who is diagnosed with Asperger's syndrome and ADHD (medicated with Ritalin). Over the past year we have noted changes in mood. He frequently goes home crying, becomes very clingy and dependent on his mother and talks about wanting to die. This behaviour can change unpredictably to what seems like manic behaviour. If prevented from doing something e.g., having his cat present in the room, he becomes so fixated on the cat that his agitation levels rise to the point where he can become physically aggressive towards others. This behaviour is often accompanied by laughter and lots of energy. He is currently treated with Tegretal in an attempt to manage this behaviour but we have not noted significant improvements. There appears to be similarities between the executive functioning difficulties associated with Asperger's and Bipolar Disorder. Is it possible for a co-occurrence of Asperger's and Bipolar? Is there a clear way to differentiate between the two disorders? |
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Peptides
Author : G Steadman, 4 Oct 2004 22:02
Could I have some professional input here on the research being carried out around the world inc UK on the presence of petides in the urine of ASD individuals. Just how close is this to becoming published in peer reviewed journals? Many GP's, even consultants are disregarding its worth I believe without hesitation. No smoke without fire? |
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asperger genes or environment?
Author : elaine moore, 4 Oct 2004 22:55
I am an adult with aspergers and my 5 year old son has been provisionally diagnosed as having aspergers as well. My question is simple: my son is not apparently as affected as I am, so is it possible that he hes "learned" some autistic-type behaviours from me rather than physically inherited it? No one has as yet been willing or able to answer this question for me. |
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PDD-NOS
Author : Stacey, 4 Oct 2004 23:35
My son was diagnosed with PDD-NOS because he met most but not all the criteria for Asperger's. He is high functioning and attends public school with a teaching assistant. Any suggestions for the future regarding education? He also has hyperlexia, which I am told is extremely common in high functioning autistic children, which makes it extremely difficult to understand how much of what he reads he actually comprehends.
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autism genetics
Author : michelle boles, 5 Oct 2004 0:30
Dear Professor,
We have a 14 yr old who is gradually deteriorating.he is severley intellectually impaired,has developed Cerebral palsy,low muscle tone,scoliosis, high myopia increased risk of retina detachment,has had a MACE operation,has a Bard peg, no communication. Are all these things common in these children, basicaly can you suggest anything. We see a genetic spec in brisbane australia and he is stumped. Thank you michelle |
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Great people at risk
Author : fran williams, 5 Oct 2004 12:28
It is probably, if not certain, that some of the greatest scientists and engineers have had ASD. Our civilization doesn't evolve at a steady pace but in leaps and many of these people have been responsible for these leaps of progress. If a genetic basis for autism is discovered and people wth ASD start to be 'bred out' couldn't this be a disaster for all of us? |
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Self harm and autism
Author : Linda Edge, 5 Oct 2004 17:01
My Grandson is 6 years old, he has severe autism with many of the classic symptoms. He does not speak except for odd words that come only to disappear again.
He hits himself on his thighs and arms and sometimes the face to such an extent that he bruises himself. This is usually when something doesn't happen for him, for example, he cannot get a toy to stand as he wants it to. He is also very self-directed and will start hitting himself if he cannot get his own way or if anyone interferes in his play. |
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Are you going to reply to my posts ?
Author : M.Casey, 5 Oct 2004 17:38
Dear Prof.Bailey,
I am still interested in knowing your opinions on the two posts I have made so far: the post on Amy Nelson's pre-natal screening and my 'Where is the Autistic Voice ?'
M.Casey |
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autism and communication disorder
Author : kathy coleman, 5 Oct 2004 18:12
Dear Professor Bailey, My son is high-functioning autistic and 16 years old. I just discovered my son has a severe auditory processing problem, in fact hes been compensating all of his life. He also has a communication disorder, sometimes the words do not some out correctly. Can this disorder get any better and does it have something to do with his auitory processing problem? Hes a sophomore in high school, in all regular classes with an IEP and resource room for one on one. Hes been on the honor role on his own for the past 3 years. Unfortunately he has not passed his ISTEPS yet, but he is close. When people meet him, they do not even know he is autistic. I did a year and a half of secretin injections and it saved his life. Hes doing so much better than other teens with the same disability. Thank you for your help.
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Autism and Tics
Author : gaye sherman, 5 Oct 2004 21:10
Can you give me a good resource or suggestions for suporting Autistic individuals diagnosed with tics? |
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