Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hello > ----- Original Message ----- > From: zpapacarroll > > But I really would love a serious answer if someone knows it - all > this discussion (both here and in the press) about eradicating > austistics and aspergerians - I want to know who they are opposing, who the people are who are trying to annihilate them with cures, and exactly what they are proposing. > > ===>I'll take a stab at this as I had just the type of granddaughter that they are referring to. I don't wish to offend anyone, is included, as is has been a thoughtful and respectful member here and offered some valuable insights. > > First, no one is trying to " treat " them, but they do not want anyone " like " them treated either. Again, my dgd, who was extremely close to Asperger's would fall into this category. > > She was not in pain, not physically, no digestion problems, plenty of language, very academically and musically talented. What she mostly lacked was an inability to connect to others, although she probably would have grown up to be able to interact, but not connect, truly, to other " Aspies " like herself. i am slightly different there. i am a well respected member of my adult asperger social group. i take aspies/auties on holiday twice a year (collect the money, pay for the holiday, book the tickets and write the plan). i can in a way connect to non auties/aspies (we call them NTs). My academic achievement however is hampered somewhat by my dyslexia, i am attempting AS maths in the hope it will find me work. It is complicated by my muddling opposites (adding when i should take away and confusing adding and taking away negative numbers). > > In discussing this with other parents' of Aspies (including my own sister, my 11 year old nephew is also Asperger) I am told that their quirks are " part of their identity " and that the fear is if you treat them they will somehow lose their superior intellect. Yes we do fear that. There was an article written in asperger united a few months ago about what a cure would mean. > > First, I never considered her Aspergerishness part of her identity anymore than someone with diabetes considers it part of their identity. Diabetes is different to aspergers. Aspergers is to do with how we think. Diabetes is to do with how we process and store sugar in our bodies. We can train our minds to think differently but we cant train our bodies to produce insulin or process sugar better. > Nor did she, I believe, nor will she ever. i was unhappy with my aspieness before i went gf/cf and went off risperdal. i hate the way doctors treat our mental health problems with psychotropic drugs. > > Second, treatment has only made her be able to share her " gifts " with a larger number of people, our entire community. She went from a 3 year old who people assumed was deaf (very bad auditory processing) to a very self confident soon to be 7 year old in first grade who is admired by both the staff and students for her reading and math abilities and something infinitely more important. Im pleased she is feeling better with biomedical interventions. > > Her school (public) also teaches social skills and unlike most schools rewards character. She was the child in her class chosen to be given the " kindness " reward, because the teacher said, she was always the first child to offer to help other children. i have always been a kindhearted individual. Also my neurodiverse friends are kindhearted. > And that, to us, signals and culminates in what we have been working for. This, to me, is also at the heart of why the Neurodiverse are protesting. If anything we would love to be able to be like your granddaughter. > > Aspergerians often, for the most part, lack the ability to see things through others' perspective. This is not the case with me. > They have emotional blindness and cannot imagine, even for a moment, what it is like to be anyone else, they have only their life experiences and feelings to consider so they are unable to extrapolate from watching others' feelings of connectedness and empathy. Again, not trying to be mean, just trying to explain. This is not the case with me but could be with some of my less aware friends. > > To me, it comes down to what you value, even if she would have lost every bit of her " gifts " we would have continued. The best day of my life, hands down, occured last summer when I dropped her off at day camp when she spotted one of her little friends who had been absent for 3 days. They saw each other at the same time and both ran toward each other and hugged when they met. i am able to do that as well. > > As I drove home I couldn't help remembering how just a year and a half earlier when a child tried to hug her she recoiled and now she was hugging with abandon, truly able to connect to others. i only do that when certain people try to hug me. i find thier hugs physically painful and im 28. > That is what we value here as I know lots of smart, miserably unhappy people and lots of other people without any " gifts " who are truly happy and connected to others. i know a few people like that. One aspie dictates what his parents do and when they go out. As this behaviour has never been tackled its now inbuilt and he " gets away with it " . Another person wont claim DLA or get a railcard as he doesnt consider himself disabled. > > I've said this before but the main reason we started Biomed was that she is the only child of an only child and someday she will be alone. There are no other siblings/family or anyone and I shudder to think what her world would have been like without treatment. Agreed it has made her a happier person. We are not against that at all and never have been. is > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 well that would be nice wouldnt it, fashionable recovery from autism. recovery from autism will inevitably open up such a political pandora's box that will cost billions. the politics of autism, always gets in the way. parents like me and the rest, who remember their children pre autism, who know something went wrong and know that biomed has helped to heal our children, also know that autism wasnt just " a genetic aberration " . It wasnt that autism was just " meant to be " , cause when the illness goes, the so called " autism " goes with it. i dont set out to " cure " autism. My son didnt have a problem pre 14months old. i set out to recover from autism. something happened to the infant i had, who could talk, put an 18 piece train set together and play with other children and kick a ball. I want that boy back and i have no doubt, as i watch him struggle to initiate with other children now, at the age of 4, that he wants that boy back too. He has a very limited life, with no friends, and is totally dependent on his family and is so very different from other 4 year olds who have a world in front of them that they can access so much easier than he can. He has lost out on so much that other kids and parents take for granted. I want him back for me as well. He is sitting in the living room right now with his father who is trying his best to understand him. autism can be very hard on fathers. when parents heal their children, the autism " presentation " can be reduced or even is removed. so, what exactly was " autism " in the first place if the presentation/behaviours of autism can be removed when the body heals??? am i, as a parent to allow my child a life of pain and discomfort to ensure he never lets the " side " down? so he can continue to be a shining example of autism personified? My son had chronic constipation for 3 years of his life. His presentation was major hyperactivity, walking on toes, squatting, hanging over furniture (in pain), chronic viral infections, respiratory infections, numerous hospital visits, howling in the middle of the night, bloating, vicious excema and self limited eating. Well, turns out this wasn't autism at all, (as his doctors suggested)it was a medical condition. Yeah, it affected how he thought, he couldnt think because of pain, he couldnt sit still because of pain/discomfort. His whole being was crying out " help me mom " . He didnt want to be with anyone cause he was concentrating on his own bowel and how to relieve it. others would have thought his strange movements might just be autism. they weren't. I wonder, though in terms of the future, after years of feeling the pain and discomfort of bowel and other problems, and having a mommy who couldnt " fix it " how this would impact on his thinking. when you feel good, you do better, you are happy, ready to engage. when you dont feel good, you just wanna lie in bed. when you have parents you expect them to help you in every possible way they can. what parent with a child like this would say " no johnny, you are autistic, and we must not help you because if we help you, you might not fulfill the diagnostic criteria any longer and you might offend your doctor or other persons with autism????? " so by the age of 10, how much time would have been wasted by my boy concentrating on pain and discomfort? How many opportunities would have been lost? how much interaction can you have when your guts are twisted? How would you want to " be " with others, or how do you take your mind off pain to learn new things when in this state? this affects thought/learning/patterns, etc, using biomedical interventions, which is what the parents do on this board, is not " eradicating " the personhood of those with autism. In fact, its quite the opposite. Its permitting the person to actually be who they want to be, (not who they are meant to be by the way, there is no such thing)minus the medical conditions, giving them a choice to be something else than a walking talking pain factory. as a parent, i have a totally different perspective than a person with an asd, who does not have children. I must do what is best for my child. I would gladly take my child's difficulties, including all the discomfort and pain he has experienced since birth. I also believe beyond the shadow of a doubt that autism is man made. The environment, the filth we have been living in and that has surrounded us for decades has contributed to the rising rates of autism dx around the world and our children have suffered for it. we can pussy foot around this issue, but i am sure many parents here believe this, my son's porphyrins tests are testimony to this as was the womb he was gestated in (the average womb is a toxic sea) there is so much more this story than just using biomed. My child has been hurt, and i am angry about that. Not much i can do about the anger, but as they say, success is the best revenge, and there is no way I am going to allow my child to just continue on, the way he did from the age of 2, so that he winds up like the people i personally have witnessed at the local " mental hospital " i mentiond earlier. I am not prepared to take any chance on just letting my son " be " his self, his autistic self or otherwise, whilst he continues to have physical/medical ailments. this is not about being " afraid " of autism. I used to be afraid of autism pre diagnosis, due to ignorance about the condition. Now i know more about what autism is and the political machinations that go on worldwide, to keep autism in a static state. I am berated for this in my own personal life, and i must remind myself, that the argument isnt about me or my child, its about the whole world coming down on parents who dare to help their children from a condition that doctors know very little about and about whom the government has no political will to investigate, for very obvious reasons. however, when i hear from persons like alexis that autism and aspergers equal learning disability, i do get angry again because this misdirected myth is generally believed by society who doesnt know any better and does much damage to children like mine. I am also surprised that this comment came from a person with aspergers ( alexis i did not know you had aspergers as the only time i have ever seen your name has been in the last in the few days) I would have thought that you would know that this myth is indeed a myth. > > > In a message dated 29/11/2007 22:29:55 GMT Standard Time, > alexis.atrekkie22@... writes: > > I am asking WHO is threatening them with eradication. WHO. Tell me > > the name of persons or organisations that are advocating that > > autistics and aspergerians are treated " against their will " or value > > fashion or whatever. > > Ok, i thought it was the parents here. i guess i was wrong. > > > > >>>I thought (and of course I maybe wrong) that by us using biomed to help > our kids and as we get better at it and more is known, more kids may recover, > it could then become 'fashionable' to cure autism/s and then society as a > whole, including governements may feel that 'curing' the autism/s may be best > for society. (probably for cost issues) > > Its at that point the ND's would be threatened, not by indiviudal or > organisations but by society as a whole. By treating our kids we are fuelling this > fire..............? > > But I have never discussed this with anybody ND, so I am guessing > > Mandi x (who has been away for 2 days - what a lot of post!!!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 as a side note, biomedical interventions and other interventions for autism do not equal eugenics. its actually the medical establishement that does absolutely nothing for our children that are researching the autism " gene " to abort babies who have it. so, for those who believe that autism is " genetic " and that a gene will eventually be found, let's hope to God, they never do. I want life for children like my son, not abortion. think about it > > > > > > In a message dated 29/11/2007 22:29:55 GMT Standard Time, > > alexis.atrekkie22@ writes: > > > > I am asking WHO is threatening them with eradication. WHO. Tell me > > > the name of persons or organisations that are advocating that > > > autistics and aspergerians are treated " against their will " or > value > > > fashion or whatever. > > > > Ok, i thought it was the parents here. i guess i was wrong. > > > > > > > > >>>I thought (and of course I maybe wrong) that by us using > biomed to help > > our kids and as we get better at it and more is known, more kids > may recover, > > it could then become 'fashionable' to cure autism/s and then > society as a > > whole, including governements may feel that 'curing' the autism/s > may be best > > for society. (probably for cost issues) > > > > Its at that point the ND's would be threatened, not by indiviudal > or > > organisations but by society as a whole. By treating our kids we > are fuelling this > > fire..............? > > > > But I have never discussed this with anybody ND, so I am guessing > > > > Mandi x (who has been away for 2 days - what a lot of post!!!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 This is exactly why everyone needs to stay out of the business of parents raising their children. If it becomes accepted that parents are NOT the people best situated to decide what is in the interests of their children, then we open the door to: 1) all children needing to be " cured " against the will of the children/parents OR 2) no one being able to avail themselves of biomed, should they choose. Even if any single person believes that one of these two options is desirable, it is still a dangerous thing to espouse, because once government has the authority to usurp parental authority, then it's just a matter of a vote, as to which of the two options are chosen. > >>>I thought (and of course I maybe wrong) that by us using biomed to help > our kids and as we get better at it and more is known, more kids may recover, > it could then become 'fashionable' to cure autism/s and then society as a > whole, including governements may feel that 'curing' the autism/s may be best > for society. (probably for cost issues) > > Its at that point the ND's would be threatened, not by indiviudal or > organisations but by society as a whole. By treating our kids we are fuelling this > fire..............? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 > Again another safety protocol which is not an autism intervention. is, are you one of those literal people? I wasn't thinking this was the case, as I see you trying to make inferences and assuming " implications " all over the place - did you think that I was saying that carseats are an autism intervention? This was evidence for my claim that children are not well equipped to make decisions about their well being, and I think it demonstrates that well. You seem to be sidetracked by the form of my argument however. If it would help you for me to try to be very literal and/or explain the form that my arguments are taking in order to help you evaluate them, I will try to do that. > > Children often don't know what is best for them (and adults suffer > > from this often as well, but we let them do a lot of what they want > in the name of autonomy), and the usual route around this problem is > that their parents try their best to act in the interests of their > > children. > > Agreed in some cases > > > Sometimes that means holding their kids down and giving them medicine. > Not neccessarily but its a shame it has to happen this way. I understand that it has to be done in some cases. Again, I can't even begin to reply to this because it is all so incoherent here, as when you have addressed it before. Sometimes you seem to be saying that you agree that it is reasonable to treat physical ailments, but not if you have to force the child, then it is okay to force the child sometimes, but it is a shame (sure it is), and then maybe even children shouldn't be forced - plus you are often hinting at something else but saying things like " not necessarily " and then not explaining things. I honestly have no idea after all these emails what you actually think about this. And to be fair, I am not sure it matters. Meaning this in the kindest way possible, I don't really care whether you approve of what I choose to do or not do with my child. Just as I do not expect you care about whether I approve of what you do. I think the relevant thing is that no one has mentioned anything about treating adults (including you and your friends)against their will. > > > > Well, again (sorry to be repetitive), no one here suggested that > > adults who are happy (and even unhealthy) be forced to take > treatments against their will. > Ok that makes sense. i will tell my friends thats whats happening. Yes, I think that is an excellent idea. Given your lack of substantive response when asked to explain where you got the idea that someone is trying to treat autistics against their will, (and forgive me for being so frank) your friends are starting to sound like they've invented their enemies. > > Again, I have no recollection of anyone here saying anything > remotely about shame or forced interventions for people of an age > where they are capable of making decisions for themselves - so I am > not sure who you are fighting with. > > Thank you for clearing this up. Ok so its not being forced upon people > who dont want it. I am glad that it is finally cleared up. > > If someone here said something like this, > > please quote them so I can see what you are talking about. > > i thought it was implied. This is absolutely incorrect so, no, it was/is not implied. Let me explain this very literally: Implication is an expression of " entailment " in logic (and language). What this means is that for some statement (let us call it Statement A), it is NECESSARILY the case that a different but related statement (that I am calling Statement is true. The truth of statement REQUIRES the truth of the other. So nothing is ever simply " implied " - it is only ever the case that it is implied by something else. You didn't say what " implied " that people are trying to force-treat adult autistics. And there is nothing you said, nor something that anyone else said that " implies " the necessary truth of the statement " adult autistics should be force-treated. " If you still think there is, please send me the direct quote and I will try to help. I hope this clears this up and you realise that no one here has been arguing this point with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Again, this is WRONG - please see my explanation of what implication actually means in my other response. Let me further point out that you are the ONLY one who has mentioned DAN! at all in this discussion, and that furthermore I have never seen a reference in this group (or anywhere else, to be brutally honest) to treating people against their wills. Maybe there are some people who are autistic adults want their autism " defeated " - I would give them the autonomy for that decision just as I give you the autonomy for your decision " not to defeat " (whatever that might mean to you) - but again, I think the relevant feature here is that you are arguing with people who have never made the claims that you are attributing to them, nor have they " implied " them. There has been no discussion of eradication, nor any implication of it. I am sure you don't appreciate being reduced to some stereotype, ridiculous caricature or easy-to-out-argue straw man in someone's mind, contrary to all the evidence that exists in what you have actually said. I cannot for the life of me figure out what you are hoping to have happen by doing so to others. > The term " defeat autism now " implies irradication. DAN! doctors are > doing this. > >Ok, i thought it was the parents here. i guess i was wrong. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hi - It's a very interesting story about your granddaughter! It also sounds like she is somewhat uncommon in that she had no medical issues - I keep reading that over half of autistics/aspergerians have gut issues, and that with other physical symptoms (like the sensory problems that is says she suffers with) and others, most of these people do have medical problems. Now, it seems like you're saying something like: the people who are complaining about others' biomedical treatment are not so worried that someone is going to treat *them* against their will as they are worried about what it says about them if people who are " like them " are seen as flawed and in need of treatment. Are you thinking that by someone else choosing to treat their child, that they are feeling devalued? I have a child very similar to your dgd, except that mine has a language delay of some significance. His hair test showed a lot of lead, and then we found the lead paint in his room in this rented house. The meds that remove lead from the body seem to have a direct effect on his language. Do the lead ions in him somehow become part of his personal identity? Not being silly, I think someone could argue for that if they wanted - we have neurotransmitters that make us who we are, and all the other minerals, vitamins, chemicals, amino acids, etc. I think all of this is becoming increasingly difficult as the newer research showing correlations between mercury and autism, for example, are coming to light. Thanks for clarifying the idea that it is an idea or feeling that is is trying to oppose, more than any actual person or organisation trying to do something to her against her will. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 well said I realised this acouple of months ago when Autism speaks (US) anounced there research director (who has a eugenics background) I guess the NAS needs space between it and Research autism as prenatal testing is where well funded research is heading .... eventually. There is nothing wrong with my genes an I would not wish to be given this choice . Mark h > > > > > > > > > In a message dated 29/11/2007 22:29:55 GMT Standard Time, > > > alexis.atrekkie22@ writes: > > > > > > I am asking WHO is threatening them with eradication. WHO. Tell > me > > > > the name of persons or organisations that are advocating that > > > > autistics and aspergerians are treated " against their will " > or > > value > > > > fashion or whatever. > > > > > > Ok, i thought it was the parents here. i guess i was wrong. > > > > > > > > > > > > >>>I thought (and of course I maybe wrong) that by us using > > biomed to help > > > our kids and as we get better at it and more is known, more > kids > > may recover, > > > it could then become 'fashionable' to cure autism/s and then > > society as a > > > whole, including governements may feel that 'curing' the > autism/s > > may be best > > > for society. (probably for cost issues) > > > > > > Its at that point the ND's would be threatened, not by > indiviudal > > or > > > organisations but by society as a whole. By treating our kids > we > > are fuelling this > > > fire..............? > > > > > > But I have never discussed this with anybody ND, so I am > guessing > > > > > > Mandi x (who has been away for 2 days - what a lot of post!!!) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hello Vicky said however, when i hear from persons like alexis that autism and aspergers equal learning disability, i do get angry again because this misdirected myth is generally believed by society who doesnt know any better and does much damage to children like mine. I am also surprised that this comment came from a person with aspergers ( alexis i did not know you had aspergers as the only time i have ever seen your name has been in the last in the few days) I would have thought that you would know that this myth is indeed a myth. > i have nothing against parents trying to help their kids bowel conditions. i myself had constipation and bloating and had trouble on the loo every couple of days as i couldnt get anything out. i found out by accident that going gf/cf helped this along with the milk thistle. What does bother me however is when stims that dont hurt anyone are seen as bad and have to be corrected. if they dont hurt anyone else (physically or emotionally) then why correct them? I have problems learning to socialise, you could say i have a learning disability in learning socialisation and living skills. No other parent in our groups find that statement harmful. Even some of the counsellors on the NAS agree with me. If i didnt accept that i have a learning disability (note i didnt say whether it was permanent or temporary as i am learning from my home support team living and social skills), then i wouldnt have been accepted on this housing scheme. is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hello > > > ----- Original Message ----- > From: atrekkie22 > > In discussing this with other parents' of Aspies (including my own > sister, my 11 year old nephew is also Asperger) I am told that their quirks are " part of their identity " and that the fear is if you treat them they will somehow lose their superior intellect. > > Yes we do fear that. There was an article written in asperger united a few months ago about what a cure would mean. > > ====>This is a baseless fear, no intellect was lost, nothing, and her learning disabilities (5, which I identified, are gone). Have any of your Aspie friends or yourself ever known anyone treated by Biomed that lost anything? I'd be almost certain you don't. This is NOT the fear, this is what they SAY the fear is, or the presenting fear. So intense concentration on one task wasnt lost? Thats good news that i can relay back to my friends. My adding up mentally in my head is not as good as it used to be. But my memory and concentration are better. It is the fear we have. > > You have to dig deeper for the " real " fear. Not to get personal but can you imagine what it is? The real fear is tht we would be unable to concentrate for long periods on certain tasks, we would loose our aspie friends, we would be unable to see the world from the unique perspective of an aspie/autie person. > > > > First, I never considered her Aspergerishness part of her identity anymore than someone with diabetes considers it part of their identity. > > Diabetes is different to aspergers. Aspergers is to do with how we > think. Diabetes is to do with how we process and store sugar in our bodies. We can train our minds to think differently but we cant train our bodies to produce insulin or process sugar better. > > =====>Not to me, both are medical problems solved by nutrition/chelation etc. Once her body was rid of the metals it was able to work better as was her amygdala, the feeling part of the brain. i didnt know that diabetes could be reversed with chelation. > > > They have emotional blindness and cannot imagine, even for a momente, what it is like to be anyone else, they have only their life > experiences and feelings to consider so they are unable to extrapolate from watching others' feelings of connectedness and empathy. Again, not trying to be mean, just trying to explain. > > This is not the case with me but could be with some of my less aware friends. > > ====>The hallmark features of Autism are language and social impairment, in Asperger's it is largely a social impairment, an inability to connect and there are different levels of being able to connect. Two 3 year olds who are engaged in parallel play are connecting but not in the way they are capable of when they are 4 or 5 years old. i do have social impairment but its mainly taking hints, using eye contact appropriately, knowing how and when to ask for help. It doesnt involve understanding others thoughts and feelings as much as it used to be. > > I do admit to occasionally being sorry that we have fixed this as to open her up to others' thinking is to expose her to some pain that she would not have otherwise known. Just last month she was having normal first grade friend problems with one of her best little pals who had her cousin with her for the month and our little one felt left out. She complained to me that they were not waiting for her after lunch. > > I asked her if they had said they didn't want to play with her and she said " No, but that is what I think they are feeling. " There it is, theory of mind and boy is it painful sometimes. Perhaps that's the real fear? Not with me it isnt. is > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hello > > Talking this over with Bob, you can imagine a doctor/trickcyclist > dealing with a patient they have been fruitlessly " treating " for years for various hard-to-pin down ailments centring around social > unhappiness. All of a sudden this patient decides to be happily ASD. > Everyone is happy. The doctor isn't expected to offer treatment which costs money because there isn't any treatment. The patient has a label which they can show off to friends. The doctor gets to see the next patient who maybe has schizophrenia ..........All are happy and it's free. We dont show off our aspergers, in fact we can be hesitant about when and how to tell people. > > I don't think it matters much. I had an ed psyche come and see Edith for the first time yesterday. (Southwark are hopeless which is why I do everything myself). He came with an open mind and a (slight) prejudice in favour of a mild problem. He only had to see her and hear her speak to start saying............. " I'll come back as many times as it takes to get this right.............that's a bit (mutter) at this > age............we'll tape her speech and that should persuade social > services " etc etc. Talking about other handicapped children who sounded pretty severe to me ( " not as handicapped as yours " ) If you have a handicapped child, then it's easy to prove. We can demonstrate that Edith is handicapped and can't be independent any time by letting > someone meet her. I keep hoping someone will say " You've done a > wonderful job with her and she's cured " but they all just go pale and say " Well I can see I've got a big task on here (assessing her) " I can understand how degrading that can be for you. After working to hard to help her you should be awarded by the authorities. > > Natasa said it ages ago -- no one is going to stop us looking after our children (which is what treating and advocating are) because if they did they would have to pay someone else to do it. We do a great job for nothing and even lie awake worrying about it > > xx Sally is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 until very recently persons with autism/asd would have easily been represented to state services with a learning disablity/mental retardation. this DID hurt them and this view still exists today, to the point where children with autism are placed in severe learning disabled units (as was suggested for my son) and where the bar is often set so low (because these kids are so low functioning you know) that they risk never getting out. there is nothing in the dx that says anything about learning ability, its all based on behaviour. there is nothing to suggest that autism/asd's have a comcomitant learning disability. again, this is a damaging myth and one that may make it easier to obtain services, but one that in the long run does an individual no favors. my child has an asd. He is 4 and knows his numbers to the double digits and knows his abc's and is learning to read/write. he has surpassed what some of his peers in his mainstream nursery can " do " and he is " behind " them in other things, like joining in games/knowing social rules. he is not learning " dis " abled. He has a high propensity for learning if only he wasnt pandered to by teachers and society as being thick, and unable to learn the way the " rest " of his classmates might learn. > > Hello > > Vicky said > > however, when i hear from persons like alexis that autism and > aspergers equal learning disability, i do get angry again because > this misdirected myth is generally believed by society who doesnt > know any better and does much damage to children like mine. I am > also surprised that this comment came from a person with aspergers ( > alexis i did not know you had aspergers as the only time i have ever > seen your name has been in the last in the few days) I would have > thought that you would know that this myth is indeed a myth. > > > i have nothing against parents trying to help their kids bowel > conditions. i myself had constipation and bloating and had trouble on > the loo every couple of days as i couldnt get anything out. i found > out by accident that going gf/cf helped this along with the milk thistle. > > What does bother me however is when stims that dont hurt anyone are > seen as bad and have to be corrected. if they dont hurt anyone else > (physically or emotionally) then why correct them? > > I have problems learning to socialise, you could say i have a learning > disability in learning socialisation and living skills. No other > parent in our groups find that statement harmful. Even some of the > counsellors on the NAS agree with me. If i didnt accept that i have a > learning disability (note i didnt say whether it was permanent or > temporary as i am learning from my home support team living and social > skills), then i wouldnt have been accepted on this housing scheme. > > is > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hello > > is you have quoted someone else and typed Vicky Said, I'm sure it wasn't me. > Both my boys have LD's so unless I'm losing the plot, which is possible, then it wasn't me. Ok sorry vicky is > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 > > > And even then she may not get it. > > Get what exactly? That you despise difference? I cannot presume to know why is might not get what is being said here, but I think I can safely say from her comment that Celia despises difference that, in fact, something is not being understood. Our wanting to help our children has absolutely nothing to do with despising their differences. To say such a thing reveals an enormous ignorance and an unkind, untrue presumption about our love for them. We are trying to help our children in order to give them exactly what the ND people seem to value so highly, at least for themselves, and that is a choice. My son has no choices. He is for the most part trapped in his fears, in his inability to communicate, in his body that can no longer have normal bowel movements or digest food properly or even fall asleep when it is tired. My son will not have choices as an adult unless things change for him drastically. He will not have the luxury of accusing people of jeopardizing his autonomy. He will have none, and no voice to make the accusation. And please do not insult me by claiming that my son might improve all on his own. In my little region alone I know of adults on the spectrum who are living just the sort of nightmare I am trying to avoid for my son. For any one adult with autism you can point out who is, to quote something I just received in my mailbox, " thriving " , I can show you two who are absolutely not. Our society, whether we like it or not, takes away the autonomy of people who are either a burden or a danger to society. That is why it is absolutely ridiculous to accuse biomedical parents and researchers of trying to harm people with autism in any way. We are offering more choices, not less. How offering options for improving quality of life can somehow become equivalent to trying to eliminate a person is completely beyond comprehension. The reality is that some people with autism do become so much of a burden on society or a danger to society that the medical and legal establishments will force drugs on them and/or confine them. That is exactly what biomedical parents are NOT about. We want for our children the choices that human beings are entitled to. No one is trying to force any sort of biomedical treatments on adults who choose not to have them. Even if I believe their choice is based entirely on fear and ignorance, I would not agree that forcing them is a good idea. I have lost my patience completely with the ridiculous accusations that we as parents are trying to eradicate who are children are. This list is supposed to be a safe place for people to support each other in their fight for their children. Debate is fine, but no one should have to defend themselves against accusations that they despise the differences in their children. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 So many people have said to me re Nic. 'poor you, how terrible, but the quicker you accept his autism and get on with your life the better for everyone' they see me researching, learning and asking questions (I'm not one of you clever ones - council estate, crap comprehensive ed, left school at 16 me!) and maybe feel threatened by my determination? or by the new me? who knows? What I say to them is 'i HAVE accepted he has autism, but i'll never accept his mercury, lead, pcb's, inflammations, allergies, leaky gut, vit/min deficiencies etc, and if in curing him of his physical problems it has an impact on his autism - then great!' (my eldest has IBD and yes, i want to help her recover from that) My 2 nt kids have a lifetime of choices ahead of them - THAT'S what I want for Nic. And, i also want to add another thing although I shouldn't have to say it - i love them all equally and unconditionally jane I admire you people, i really do. how do you keep on keeping on? i've only been here for 6 months and i've aged 10 years! > > > > > > > > > And even then she may not get it. > > > > > > Get what exactly? That you despise difference? > > > > I cannot presume to know why is might not get what is being said > > here, but I think I can safely say from her comment that Celia > > despises difference that, in fact, something is not being understood. > > > > Our wanting to help our children has absolutely nothing to do with > > despising their differences. To say such a thing reveals an enormous > > ignorance and an unkind, untrue presumption about our love for > > them. We are trying to help our children in order to give them > > exactly what the ND people seem to value so highly, at least for > > themselves, and that is a choice. My son has no choices. He is for > > the most part trapped in his fears, in his inability to communicate, > > in his body that can no longer have normal bowel movements or digest > > food properly or even fall asleep when it is tired. > > > > My son will not have choices as an adult unless things change for him > > drastically. He will not have the luxury of accusing people of > > jeopardizing his autonomy. He will have none, and no voice to make > > the accusation. And please do not insult me by claiming that my son > > might improve all on his own. In my little region alone I know of > > adults on the spectrum who are living just the sort of nightmare I am > > trying to avoid for my son. For any one adult with autism you can > > point out who is, to quote something I just received in my > > mailbox, " thriving " , I can show you two who are absolutely not. > > > > Our society, whether we like it or not, takes away the autonomy of > > people who are either a burden or a danger to society. That is why > > it is absolutely ridiculous to accuse biomedical parents and > > researchers of trying to harm people with autism in any way. We are > > offering more choices, not less. How offering options for improving > > quality of life can somehow become equivalent to trying to eliminate > > a person is completely beyond comprehension. > > > > The reality is that some people with autism do become so much of a > > burden on society or a danger to society that the medical and legal > > establishments will force drugs on them and/or confine them. That is > > exactly what biomedical parents are NOT about. We want for our > > children the choices that human beings are entitled to. No one is > > trying to force any sort of biomedical treatments on adults who > > choose not to have them. Even if I believe their choice is based > > entirely on fear and ignorance, I would not agree that forcing them > > is a good idea. > > > > I have lost my patience completely with the ridiculous accusations > > that we as parents are trying to eradicate who are children are. > > This list is supposed to be a safe place for people to support each > > other in their fight for their children. Debate is fine, but no one > > should have to defend themselves against accusations that they > > despise the differences in their children. > > > > Anita > > > > > > ------------------------------------------------------------------ ------ > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: 29/11/2007 20:32 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 its all double speak and reminds of me arbeit macht frei > > > > > > > > > > > > > > > And even then she may not get it. > > > > > > > > > > Get what exactly? That you despise difference? > > > > > > > > I cannot presume to know why is might not get what is being > > said > > > > here, but I think I can safely say from her comment that Celia > > > > despises difference that, in fact, something is not being > > understood. > > > > > > > > Our wanting to help our children has absolutely nothing to do with > > > > despising their differences. To say such a thing reveals an > > enormous > > > > ignorance and an unkind, untrue presumption about our love for > > > > them. We are trying to help our children in order to give them > > > > exactly what the ND people seem to value so highly, at least for > > > > themselves, and that is a choice. My son has no choices. He is for > > > > the most part trapped in his fears, in his inability to > > communicate, > > > > in his body that can no longer have normal bowel movements or > > digest > > > > food properly or even fall asleep when it is tired. > > > > > > > > My son will not have choices as an adult unless things change for > > him > > > > drastically. He will not have the luxury of accusing people of > > > > jeopardizing his autonomy. He will have none, and no voice to make > > > > the accusation. And please do not insult me by claiming that my > > son > > > > might improve all on his own. In my little region alone I know of > > > > adults on the spectrum who are living just the sort of nightmare > > I am > > > > trying to avoid for my son. For any one adult with autism you can > > > > point out who is, to quote something I just received in my > > > > mailbox, " thriving " , I can show you two who are absolutely not. > > > > > > > > Our society, whether we like it or not, takes away the autonomy of > > > > people who are either a burden or a danger to society. That is why > > > > it is absolutely ridiculous to accuse biomedical parents and > > > > researchers of trying to harm people with autism in any way. We > > are > > > > offering more choices, not less. How offering options for > > improving > > > > quality of life can somehow become equivalent to trying to > > eliminate > > > > a person is completely beyond comprehension. > > > > > > > > The reality is that some people with autism do become so much of a > > > > burden on society or a danger to society that the medical and > > legal > > > > establishments will force drugs on them and/or confine them. That > > is > > > > exactly what biomedical parents are NOT about. We want for our > > > > children the choices that human beings are entitled to. No one is > > > > trying to force any sort of biomedical treatments on adults who > > > > choose not to have them. Even if I believe their choice is based > > > > entirely on fear and ignorance, I would not agree that forcing > > them > > > > is a good idea. > > > > > > > > I have lost my patience completely with the ridiculous accusations > > > > that we as parents are trying to eradicate who are children are. > > > > This list is supposed to be a safe place for people to support > > each > > > > other in their fight for their children. Debate is fine, but no > > one > > > > should have to defend themselves against accusations that they > > > > despise the differences in their children. > > > > > > > > Anita > > > > > > > > > > > > ---------------------------------------------------------- > > ------ > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: > > 29/11/2007 20:32 > > > > > > > > > > > > > ----------------------------------------------------------------- ------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.16.10/1160 - Release Date: 29/11/2007 20:32 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hello > > > > Again another safety protocol which is not an autism intervention. > > is, are you one of those literal people? I wasn't thinking this > was the case, as I see you trying to make inferences and assuming > " implications " all over the place - did you think that I was saying > that carseats are an autism intervention? i can be literal but in this case you were not comparing like with like. You were comparing an intervention used on any child with one used on an autistic child. > > This was evidence for my claim that children are not well equipped to make decisions about their well being, and I think it demonstrates > that well. No its doesnt as it applies to all kids. i was talking about autism intervention. > You seem to be sidetracked by the form of my argument however. If it would help you for me to try to be very literal and/or explain the form that my arguments are taking in order to help you evaluate them, I will try to do that. If you were comparing like with like that would make more sense to me. > > > > > Children often don't know what is best for them (and adults suffer from this often as well, but we let them do a lot of what they want in the name of autonomy), and the usual route around this problem is that their parents try their best to act in the interests of their > > > children. > > > > Agreed in some cases > > > > > Sometimes that means holding their kids down and giving them > medicine. > > Not neccessarily but its a shame it has to happen this way. I > understand that it has to be done in some cases. > > Again, I can't even begin to reply to this because it is all so > incoherent here, as when you have addressed it before. Sometimes you seem to be saying that you agree that it is reasonable to treat > physical ailments, Yep it is ok too treat bowel conditions and pain. > but not if you have to force the child, Depends on what you need to do and why. > then it is okay to force the child sometimes, but it is a shame (sure it is), and then maybe even children shouldn't be forced - plus you are often hinting at something else but saying things like " not necessarily " and then not explaining things. I honestly have no idea after all these emails what you actually think about this. That holding a kid down to give them medicine is a shame when its needed. I wish kids could be talked into taking the stuff or not have sensory issues. > > And to be fair, I am not sure it matters. Meaning this in the kindest way possible, I don't really care whether you approve of what I choose to do or not do with my child. How can you " not caring " be meant in a kind way? > Just as I do not expect you care about whether I approve of what you do. I think the relevant thing is that no one has mentioned anything about treating adults (including you and your friends)against their will. i misunderstood the term that DAN! stood for. Wasnt this group part of DAN! or what DAN! stands for? > > > > > > Well, again (sorry to be repetitive), no one here suggested that > > > adults who are happy (and even unhealthy) be forced to take > > treatments against their will. > > > Ok that makes sense. i will tell my friends thats whats happening. > > Yes, I think that is an excellent idea. Given your lack of > substantive response when asked to explain where you got the idea that someone is trying to treat autistics against their will, (and forgive me for being so frank) your friends are starting to sound like they've invented their enemies. They didnt invent their enemies they still may not like DAN! however they may be less against parents groups like this one. > > > > Again, I have no recollection of anyone here saying anything > > remotely about shame or forced interventions for people of an age > > where they are capable of making decisions for themselves - so I am not sure who you are fighting with. I am pleased thats the case. > > > > Thank you for clearing this up. Ok so its not being forced upon people who dont want it. > > I am glad that it is finally cleared up. > > > > If someone here said something like this, > > > please quote them so I can see what you are talking about. > > > > i thought it was implied. > > This is absolutely incorrect so, no, it was/is not implied. Let me > explain this very literally: Implication is an expression of > " entailment " in logic (and language). What this means is that for > some statement (let us call it Statement A), it is NECESSARILY the > case that a different but related statement (that I am calling > Statement is true. The truth of statement REQUIRES the truth of > the other. > > So nothing is ever simply " implied " - it is only ever the case that it is implied by something else. You didn't say what " implied " that > people are trying to force-treat adult autistics. And there is > nothing you said, nor something that anyone else said that " implies " > the necessary truth of the statement " adult autistics should be > force-treated. " If you still think there is, please send me the > direct quote and I will try to help. > > I hope this clears this up and you realise that no one here has been > arguing this point with you. is > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2007 Report Share Posted December 1, 2007 Hear hear! Peta- -- In Autism-Biomedical-Europe , " Anita " wrote: > > > > > > > > And even then she may not get it. > > > > Get what exactly? That you despise difference? > > I cannot presume to know why is might not get what is being said > here, but I think I can safely say from her comment that Celia > despises difference that, in fact, something is not being understood. > > Our wanting to help our children has absolutely nothing to do with > despising their differences. To say such a thing reveals an enormous > ignorance and an unkind, untrue presumption about our love for > them. We are trying to help our children in order to give them > exactly what the ND people seem to value so highly, at least for > themselves, and that is a choice. My son has no choices. He is for > the most part trapped in his fears, in his inability to communicate, > in his body that can no longer have normal bowel movements or digest > food properly or even fall asleep when it is tired. > > My son will not have choices as an adult unless things change for him > drastically. He will not have the luxury of accusing people of > jeopardizing his autonomy. He will have none, and no voice to make > the accusation. And please do not insult me by claiming that my son > might improve all on his own. In my little region alone I know of > adults on the spectrum who are living just the sort of nightmare I am > trying to avoid for my son. For any one adult with autism you can > point out who is, to quote something I just received in my > mailbox, " thriving " , I can show you two who are absolutely not. > > Our society, whether we like it or not, takes away the autonomy of > people who are either a burden or a danger to society. That is why > it is absolutely ridiculous to accuse biomedical parents and > researchers of trying to harm people with autism in any way. We are > offering more choices, not less. How offering options for improving > quality of life can somehow become equivalent to trying to eliminate > a person is completely beyond comprehension. > > The reality is that some people with autism do become so much of a > burden on society or a danger to society that the medical and legal > establishments will force drugs on them and/or confine them. That is > exactly what biomedical parents are NOT about. We want for our > children the choices that human beings are entitled to. No one is > trying to force any sort of biomedical treatments on adults who > choose not to have them. Even if I believe their choice is based > entirely on fear and ignorance, I would not agree that forcing them > is a good idea. > > I have lost my patience completely with the ridiculous accusations > that we as parents are trying to eradicate who are children are. > This list is supposed to be a safe place for people to support each > other in their fight for their children. Debate is fine, but no one > should have to defend themselves against accusations that they > despise the differences in their children. > > Anita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 What makes me mad is when SIBs are described as stims. I.e. if Tom is banging his head on the floor and walls and someone says " ah yes, that's a stim " . that's not. that's a desperate attempt to deal with some major inflammation and brain interference. His stimming does not bother me, he's flapping his coat hanger and singing as I type. I is a happy, contented and relaxing sound. I do have friends who admit they had trouble getting used to Tom's noises. I am cool with that, I admire their honesty. They see past it now and love Tom and his off the beaten track behaviour. What they don't love is the ludicrous journey we've had which people unrelated to autism find horrific and hard to fathom in a supposedly civilised society Stephx > > > In a message dated 30/11/2007 14:48:44 GMT Standard Time, > alexis.atrekkie22@... writes: > > What does bother me however is when stims that dont hurt anyone are > seen as bad and have to be corrected. if they dont hurt anyone else > (physically or emotionally) then why correct them? > > > > >>I haven't set up to correct any stim like this but while we have been > working on other health related things they have just gone away. We usually get > another one come along to take its place though > > Tapping the TV moved to tapping one hand on the other, then his chin, the > whole tapping thing has gone, now we have the verbals - very loud but its > doesn't bother me, I keep hoping he is exercising his voice box and that one day > soon the words will come back. He moves his mouth now and tries so hard to get > them out. He only stims when he is relaxing, I stim when I am relaxing too. > > Stims that distract from learning are more tricky, though I know some kids > who appear to be unable to learn unless they are stimming. > > I know some parents don't like stims that make the child 'look autistic', > but that doesn't bother me. > > Mandi x > Quote Link to comment Share on other sites More sharing options...
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