Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Puts the lady with 2 gifted children and three degrees in some sort of perspective Sally mark.hawk wrote: > > the nas said this a while back. might be good to quote regarding > specially gifted children > > Almost half of adults with autism in England live with their > parents, a National Autistic Society report says. > And just 15% of them are in full-time employment, says the > society's " Moving on Up? " report. > > http://news.bbc.co.uk/2/hi/health/6897908.stm > <http://news.bbc.co.uk/2/hi/health/6897908.stm> > > > > > > There was a letter in the Indie yesterday from a woman in her > middle 50s > > who had " just " been diagnosed with autism. She was on her second > MSc and > > had given uni lectures, mother of two " beautiful academically > gifted " > > daughters. She says autism is a valuable part of the human > condition > > and explains why she is " intuitive and creative " (rather like > Einstein) > > > > Anyone want to write and say it seems to be being over-diagnosed > using a > > definition so broad as to be meaningless? Certainly figures that > > included both her and Edith as people with ASD wouldn't be worth > much. > > > > xx sally > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.8/1153 - Release Date: 26/11/2007 21:08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 I haven't seen this womans letter, does she explain in it what it is about her that led to a dx? I would be interested to know how a woman who has her qualifications, a career, a relationship, children, and describes herself as intuitive is considered to have autism at all. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Great post Natasa, but what about all those kids who are not getting a dx who are way more obvious than this lady? I know in my neck of the woods it is very easy indeed to get a dx for a child but parents in other area's complain they cannot get one. Anyhow I thought we had a condition known as Asperger Syndrome, how come no one is using it anymore? Assuming she is on the spectrum then what is it about 10yrs of anti depressants she enjoyed so much? What is the fun bit about being accused of laziness? I wonder if it also fair to say those who do not consider themselves disabled will not be picking up DLA. Whatever the answers to these questions she should know she is not doing the very disabled low functioning kids any favours at all with her letter. I also think it's a bit cheeky for anyone to posthumously dx anyone with autism, or should that be Aspergers? Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 Apparently long waiting lists and then refusal of dx, not enough symptoms, wait and see, too young etc, PDDNOS, etc. Not in my neighbourhood though, there is no problem getting a dx. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 She explains that she suffered accusations of laziness, insensitivity and stupidity, disappointed her family by not fulfilling their ambitions, had hours of psychotherapy and 10 years of anti-depressants. " as an autistic person I can be chaotic, gullible, prone to forgetfulness, obsessive at times and easily overwhelmed by the demands of modern society. I am also creative, artistic, inventive and doggedly persistent. I chair my local residents association, I've taught at university and I have organised my exhibitions and workshops. At present I am studying for a second MSc and I am the proud and loving mother .............etc " I think it would be hard to deny that the condition may be over-diagnosed. She doesn't say who diagnosed her. Maybe self dramatisation. It is getting to be fashionable to be like Einstein. I think it's become meaningless. It's a spectrum. Everyone wants to be on it at the Einstein end . Sally MaddiganV@... wrote: > > I haven't seen this womans letter, does she explain in it what it is > about her that led to a dx?, > I would be interested to know how a woman who has her qualifications, > a career, a relationship, children, and describes herself as intuitive > is considered to have autism at all. > Vicky > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release Date: 27/11/2007 11:40 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2007 Report Share Posted November 27, 2007 I think that is a very good point. This cannot possibly fulfil the WHO description of autism as pervasive developmental disorder. Words must have boundaries to mean anything. I cannot believe she has been dx by a doctor. Hypochondriacs of the world, autism welcomes you. This is made worse by having no physical symptoms associated with the condition and a description which says " all children with autism are different " Certainly all these people are doing a beautiful job of demonstrating that autism is a fashionable condition (provided you don't " suffer " from it). Maybe we should leave the NAS to people like this. xx Sally natasa778 wrote: > > as far as I know him Einstein was anything BUT autistic, in fact as > far removed from the spectrum as it is humanly possible. > > re this stupid lady being diagnosed, just think about another > disability: BLINDNESS. There is a universe of difference between having > to wear reading glasses and having to use a guide dog!! > > time we start diagnosing every person without 20/20 vision as blind, > just as every person with a hint of autistic symptoms is nowdays > (self)diagnosing as autistic. > > my vision is -5 with impressive astigmatism in both eyes, no way I can > get around without glasses, time to register self as BLIND, isn't it? > > maybe we should lobby to put a stop to this all and get the 'experts' to > come up with a new name for all these fashionable autists out there. > > natasa > > > > > > > > I haven't seen this womans letter, does she explain in it what it is > > > about her that led to a dx?, > > > I would be interested to know how a woman who has her > qualifications, > > > a career, a relationship, children, and describes herself as > intuitive > > > is considered to have autism at all. > > > Vicky > > > > > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release Date: > 27/11/2007 11:40 > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release Date: 27/11/2007 11:40 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 These people are all calling themselves autistic. I think it has become a way of claiming to be a misunderstood genius. Middle-class parents may see it as a way to work the system -- remember the lady who said she went to NAS conferences with people whose children were in mainstream schools without support but had ~ " problems with tact and diplomacy " . Social dyslexia would be a good way of claiming that one's child wasn't just badly brought up and selfish but " disabled " . What to do about it would be the thing? Ask if they poo on the floor? xx Sally bbrowne123 wrote: > > among the chattering classes, it seems autism is sexy?? > > or i mean aspergers, never autism cause autism ALWAYS MEANS A > LEARNING DISABILITY RIGHT? > > sheesh, these people. > > there are some who refer to asd as a " social dyslexia " (again > probably aspergers) > > if this woman knew anything about autism, and what society actually > thinks of autism she wouldn't be so quick to include herself as > being " special " . > > > > > > > > > > I haven't seen this womans letter, does she explain in it what > it is > > > > about her that led to a dx?, > > > > I would be interested to know how a woman who has her > > qualifications, > > > > a career, a relationship, children, and describes herself as > > intuitive > > > > is considered to have autism at all. > > > > Vicky > > > > > > > > > > > > > > ---------------------------------------------------------- > ----- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release > Date: > > 27/11/2007 11:40 > > > > > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.8/1154 - Release Date: 27/11/2007 11:40 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 is you may be happy with the name just as it is, and fear more harm than good would come of a change. I am not happy though, my youngest child is classic Kanners Autism, clearly the woman in the paper is not. My oldest son is HFA and is unaware of his dx, he would be absolutely desolate if he knew he had anything approaching his disabled brothers condition. There is a need for lines to be drawn and if someone has Aspergers then they should be dx as such, having autism as a spare label is hardly going to help is it? I would have thought it would make it harder for a higher functioning person to get a dx. I would also like to know what the benefit of the dx is for someone like the lady in the paper? Does she get some kind of service from having the dx? What kind of service would someone get who has no interest in being cured, were that possible. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Thank you for the information. I think it's great that there are services out there for Asperger adults, that is as it should be, my problem though is those who say they are dx with autism but do not consider it a disability, because in their case they should receive nothing by their own definition. It's this attitude of autism is great, not a disability, culture, choice etc that really angers me, because my boys have no choice, choice does not come into the equation they are disabled as defined by every criteria out there inc DWP. I also think those who genuinely have Aspergers Syndrome do need help and services and cannot see for the life of me how all this happy stuff helps their cause. I agree Aspergers is less known to the general public and that being the case why don't the NAS do some kind of awareness of Aspergers Syndrome, actually think that would be a great idea, mind you I might be the only one thinking that lol. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Hi is, Although I can’t answer all your questions to the other two, I wanted to say the following: I think that we all find ourselves in a difficult position when such very different people are given the same diagnosis – i.e. autistic spectrum disorder. I think it is particularly difficult when some people are extremely happy and proud to be whatever this condition entails for them whilst for others the condition means pain or suffering or severe disability or all 3. as parents we are desperate to help our children who are suffering greatly. We find it hard to get the help they deserve and one more obstacle in our path is having people who do not have a disability or a condition that needs treatment being given the same label as our children. Personally, I have nothing against any of these individuals and I support them in any of their dreams/ wishes, etc but find it gets in the way that they have the same label as my son. SARA x -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of atrekkie22 Sent: 28 November 2007 17:19 To: Autism-Biomedical-Europe Subject: Re: Indie letters Hello > > among the chattering classes, it seems autism is sexy?? Nope we dont think that. > > or i mean aspergers, never autism cause autism ALWAYS MEANS A > LEARNING DISABILITY RIGHT? Actually both conditions are learning disabilities. They dont happen to always affect IQ levels (which are harder to measure in aspies anyway). > > sheesh, these people. > > there are some who refer to asd as a " social dyslexia " (again > probably aspergers) i can understand why they think that. > > if this woman knew anything about autism, and what society actually > thinks of autism she wouldn't be so quick to include herself as > being " special " . She knows about autism as shes on many autism friendly email lists, she knows what society thinks of autism. She never said she was special she just wishes to be accepted the way she is. is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 Most of them have been told they are HFA or aspergers. Why does it get in the way? As you wish your son was the same as them? Or some other reason? If hes unhappy then i hope you can help him. no, this whole discussion started because of a series of letters in the Independent. Several people including the lady in question were opposed to our wish to help our children. Amongst other things they said it would be like curing Einstein. That is why she made people so angry. Helping our children would not be like curing Einstein. SARA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2007 Report Share Posted November 28, 2007 No that's absolutely not the case, my youngest son does not have a choice to accept or not accept who he is or what he has, there is very little choice in his life, period. As for stress levels being equal for parents of HFA and Severe autism, that is also wrong. My boys are at either end of the spectrum, there is no comparison in stress levels. With a more severe child every minute of the day can be stressful, my youngest needs constant 24/7 watching, he has escaped onto the roof of the house in the past, he has flooded the house, he has harmed himself etc. I am limited in where I can take him, he can go into rage cycle in the blink of an eye and in any location, he has head butted my car windscreen clean through. He cannot tell me when he is in pain, so every rage needs to be carefully considered as he could have appendicitis or just be understimulated, no way of knowing. I could go on and on. My HFA son causes stress in as much as I feel his pain and isolation, I worry for his future, I worry about his state of mind, but is not constant, all the time and we can have really good quality time communicating in the normal way. There really is no comparison living with a very severe child is unbelievably draining, alongside the worrying and ofcourse the emotional cost of loving your child to bits and watching everything being a struggle for him, and I mean everything. I am saddened and concerned for my HFA sons future but I lose sleep at night and am frantic thinking about my severe childs future. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 I've learnt from is too and I think she has shown some bravery in seeking to explain her own and other's points of view and in replying to mails some of which have appeared at times to have made very personal comments about her intention, integrity and abilities - how can someone presume that is doesn't "get it" because of her Aspergers - or that she hasn't suffered in some of the same ways as others who are severely affected - how do you know? I have a "high functioning" son - not diagnosed as such as he's diagnosed with Childhood Autism - he is verbal and has an average IQ so is h.f. according to some definitions but I totally agree it is all muddled and unhelpful. He's a 5 years old who regularly talks about wanting to kill himself and "start again as a new baby", who was very delayed in talking, has severe faecal impaction and gut issues, who has huge sensory issues, massive anxiety, is terrified of many aspects of every day life, hypersensitive to most food, chemicals etc., who did poo on the floor, who is still in nappies, who used to be awake for hours at night, who had no eye contact, who head banged, who used to stim all day, who was very aggressive, who had to be policed day and night etc. etc.- who is to say where he would have been on the spectrum without bio-medical and other interventions we've used? Through what we have learnt through our experiences with our son, my husband believes he has Aspergers - not because he wants to lay claim to being a second Einstein or be "fashionable" - dear God, why??? - but because for the first time he can understand something about who and how he is who he is, why he has such huge anxiety, has allergies, gut problems, limited social skills, massive social anxiety, sensory issues, "sees" words as colours and and music as shapes and a million other aspects of himself he never understood before. In the light of all the mails on this forum, I asked him how he felt and if he would want to change if he could take something - he said he can't envisage changing now as he has been as he is all his life and it is now "him" and he has learned coping strategies to get by. He obviously doens't feel this way about his son as he is 100% committed to what we are doing biomedically to heal him and believes as I do that autism is treatable - he spreads that word at every opportunity as do I. I've always loved this forum for its supportive and open and non-judgemental nature. I know I can never understand how it feels to parent a child who is severely affected but I hope I still have a place here and that others do too - the huge knowledge and generositiy of spirit of those who post here has helped our family enormously. I've never worried before that I may not be intelligent enough to be on here, I didn't realise that was a factor - although I have marvelled at the indepth and detailed knowledge of many who do post on the forum. sharon x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 In defence of is, she has been on this site for a long time and she is treating herself. SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of bbrowne123 Sent: 29 November 2007 06:54 To: Autism-Biomedical-Europe Subject: Re: Indie letters atrekkie, I dont know if you know it but this forum is made up of a number of people, most of whom are parents, who are incredibly intelligent. I dont know what your motive is being here, but if it is to " convert " ? i am sure you must feel by now that you are wasting your time. However to put the shoe on the other foot, i will give you a standing invitation to come to my home anytime you like to live with our family and our 4 year old " autism " . I dont know if you have children, or what age you are, but i would love for you to watch and experience for just one day, what autism, not aspergers, not PddNOS, but autism, really is, the kind of autism that clearly you have NOT been talking about. In addition, when you arrive, the first stop will be to the local " mental hospital " where those adult persons with autism have been dumped for decades because they may have had parents who think like you, or who thought that autism is such an occasion for celebration, that their precious children were just too good for society?? as evangelists go, I have encountered much better ones than you and it is my hope (because I think you are unsure of your own convictions) that you will shuffle off the blinkers you currently seem to be wearing, or have been imposed upon you, and treat this board as a venue for knowledge. > > > > No that's absolutely not the case, my youngest son does not have a > choice to accept or not accept who he is or what he has, there is very > little choice in his life, period. > > If he is unaware of what autism means then no he wouldnt have a choice. > > > As for stress levels being equal for parents of HFA and Severe > autism, that is also wrong. > > Try saying that to the parents of our support groups. Both sets have > equal stress whether or not they have HFA or severe autistic kids. > > > My boys are at either end of the spectrum, there is no comparison in > stress levels. > > With a more severe child every minute of the day can be stressful, > > When i was at my worst then that was the case. For one year i lived in > a constant state of anxiety, i had to be prompted to do anything. My > carer ended up with severe depression as a result, she was my gran as > mum couldnt cope (or understand) with me. > > > my youngest needs constant 24/7 watching, he has escaped onto the > roof of the house in the past, he has flooded the house, he has harmed > himself etc. > > i went through that stage where i was self harming every day for weeks > on end. > > > I am limited in where I can take him, he can go into rage cycle in > the blink of an eye and in any location, > > Sounds like thats his only form of communication. If he could > communicate his needs to you in another way, would that make it easier > to take him out? i have been through that 2 before gf/cf diet. > > > he has head butted my car windscreen clean through. > > > He cannot tell me when he is in pain, so every rage needs to be > carefully considered as he could have appendicitis or just be > understimulated, no way of knowing. I could go on and on. > > i can see what you mean but isnt an adult having a meltdown where they > are shouting at you for hours on end just as stressful? > > > My HFA son causes stress in as much as I feel his pain and > isolation, I worry for his future, I worry about his state of mind, > but is not constant, all the time and we can have really good quality > time communicating in the normal way. > > There is no such thing as a " normal way " . There is a housing scheme > that can help if you can get the home support 1st. > > > There really is no comparison living with a very severe child is > > unbelievably draining, alongside the worrying and of course the > emotional cost of loving your child to bits and watching everything > being a struggle for him, and I mean everything. > > If there is no comparison then the stress levels must be the same as > you cannot compare the situations. > > > I am saddened and concerned for my HFA sons future but I lose sleep > at night and am frantic thinking about my severe childs future. > > i do worry to an extent about my future. i am unable to find suitable > work for myself, even if i did then i would have to earn £500 a month > to stay in my home. > > is > > Vicky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 lets give is a big hug and talk about something else xx Sally Sass and Rem wrote: > > In defence of is, she has been on this site for a long time and > she is treating herself. SARA > > > > * Re: Indie letters > > > > atrekkie, I dont know if you know it but this forum is made up of a > number of people, most of whom are parents, who are incredibly > intelligent. > > I dont know what your motive is being here, but if it is > to " convert " ? i am sure you must feel by now that you are wasting > your time. > > However to put the shoe on the other foot, i will give you a > standing invitation to come to my home anytime you like to live with > our family and our 4 year old " autism " . I dont know if you have > children, or what age you are, but i would love for you to watch and > experience for just one day, what autism, not aspergers, not PddNOS, > but autism, really is, the kind of autism that clearly you have NOT > been talking about. In addition, when you arrive, the first stop > will be to the local " mental hospital " where those adult persons > with autism have been dumped for decades because they may have had > parents who think like you, or who thought that autism is such an > occasion for celebration, that their precious children were just too > good for society?? > > as evangelists go, I have encountered much better ones than you and > it is my hope (because I think you are unsure of your own > convictions) that you will shuffle off the blinkers you currently > seem to be wearing, or have been imposed upon you, and treat this > board as a venue for knowledge. > > > > > > > > No that's absolutely not the case, my youngest son does not have > a > > choice to accept or not accept who he is or what he has, there is > very > > little choice in his life, period. > > > > If he is unaware of what autism means then no he wouldnt have a > choice. > > > > > As for stress levels being equal for parents of HFA and Severe > > autism, that is also wrong. > > > > Try saying that to the parents of our support groups. Both sets > have > > equal stress whether or not they have HFA or severe autistic kids. > > > > > My boys are at either end of the spectrum, there is no > comparison in > > stress levels. > > > With a more severe child every minute of the day can be > stressful, > > > > When i was at my worst then that was the case. For one year i > lived in > > a constant state of anxiety, i had to be prompted to do anything. > My > > carer ended up with severe depression as a result, she was my gran > as > > mum couldnt cope (or understand) with me. > > > > > my youngest needs constant 24/7 watching, he has escaped onto the > > roof of the house in the past, he has flooded the house, he has > harmed > > himself etc. > > > > i went through that stage where i was self harming every day for > weeks > > on end. > > > > > I am limited in where I can take him, he can go into rage cycle > in > > the blink of an eye and in any location, > > > > Sounds like thats his only form of communication. If he could > > communicate his needs to you in another way, would that make it > easier > > to take him out? i have been through that 2 before gf/cf diet. > > > > > he has head butted my car windscreen clean through. > > > > > He cannot tell me when he is in pain, so every rage needs to be > > carefully considered as he could have appendicitis or just be > > understimulated, no way of knowing. I could go on and on. > > > > i can see what you mean but isnt an adult having a meltdown where > they > > are shouting at you for hours on end just as stressful? > > > > > My HFA son causes stress in as much as I feel his pain and > > isolation, I worry for his future, I worry about his state of mind, > > but is not constant, all the time and we can have really good > quality > > time communicating in the normal way. > > > > There is no such thing as a " normal way " . There is a housing scheme > > that can help if you can get the home support 1st. > > > > > There really is no comparison living with a very severe child > is > > > unbelievably draining, alongside the worrying and of course the > > emotional cost of loving your child to bits and watching everything > > being a struggle for him, and I mean everything. > > > > If there is no comparison then the stress levels must be the same > as > > you cannot compare the situations. > > > > > I am saddened and concerned for my HFA sons future but I lose > sleep > > at night and am frantic thinking about my severe childs future. > > > > i do worry to an extent about my future. i am unable to find > suitable > > work for myself, even if i did then i would have to earn £500 a > month > > to stay in my home. > > > > is > > > Vicky > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.9/1158 - Release Date: 28/11/2007 21:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 I'd just like to add that I've been learning a lot from is' postings. PatienceEva family wrote: lets give is a big hug and talk about something elsexx SallySass and Rem wrote:>> In defence of is, she has been on this site for a long time and > she is treating herself. SARA>> >> * Re: Indie letters>> >> atrekkie, I dont know if you know it but this forum is made up of a> number of people, most of whom are parents, who are incredibly> intelligent.>> I dont know what your motive is being here, but if it is> to "convert" ? i am sure you must feel by now that you are wasting> your time.>> However to put the shoe on the other foot, i will give you a> standing invitation to come to my home anytime you like to live with> our family and our 4 year old "autism". I dont know if you have> children, or what age you are, but i would love for you to watch and> experience for just one day, what autism, not aspergers, not PddNOS,> but autism, really is, the kind of autism that clearly you have NOT> been talking about. In addition, when you arrive, the first stop> will be to the local "mental hospital" where those adult persons> with autism have been dumped for decades because they may have had> parents who think like you, or who thought that autism is such an> occasion for celebration, that their precious children were just too> good for society??>> as evangelists go, I have encountered much better ones than you and> it is my hope (because I think you are unsure of your own> convictions) that you will shuffle off the blinkers you currently> seem to be wearing, or have been imposed upon you, and treat this> board as a venue for knowledge.>> > > >> > > No that's absolutely not the case, my youngest son does not have> a> > choice to accept or not accept who he is or what he has, there is> very> > little choice in his life, period.> >> > If he is unaware of what autism means then no he wouldnt have a> choice.> >> > > As for stress levels being equal for parents of HFA and Severe> > autism, that is also wrong.> >> > Try saying that to the parents of our support groups. Both sets> have> > equal stress whether or not they have HFA or severe autistic kids.> >> > > My boys are at either end of the spectrum, there is no> comparison in> > stress levels.> > > With a more severe child every minute of the day can be> stressful,> >> > When i was at my worst then that was the case. For one year i> lived in> > a constant state of anxiety, i had to be prompted to do anything.> My> > carer ended up with severe depression as a result, she was my gran> as> > mum couldnt cope (or understand) with me.> >> > > my youngest needs constant 24/7 watching, he has escaped onto the> > roof of the house in the past, he has flooded the house, he has> harmed> > himself etc.> >> > i went through that stage where i was self harming every day for> weeks> > on end.> >> > > I am limited in where I can take him, he can go into rage cycle> in> > the blink of an eye and in any location,> >> > Sounds like thats his only form of communication. If he could> > communicate his needs to you in another way, would that make it> easier> > to take him out? i have been through that 2 before gf/cf diet.> >> > > he has head butted my car windscreen clean through.> >> > > He cannot tell me when he is in pain, so every rage needs to be> > carefully considered as he could have appendicitis or just be> > understimulated, no way of knowing. I could go on and on.> >> > i can see what you mean but isnt an adult having a meltdown where> they> > are shouting at you for hours on end just as stressful?> >> > > My HFA son causes stress in as much as I feel his pain and> > isolation, I worry for his future, I worry about his state of mind,> > but is not constant, all the time and we can have really good> quality> > time communicating in the normal way.> >> > There is no such thing as a "normal way". There is a housing scheme> > that can help if you can get the home support 1st.> >> > > There really is no comparison living with a very severe child> is> > > unbelievably draining, alongside the worrying and of course the> > emotional cost of loving your child to bits and watching everything> > being a struggle for him, and I mean everything.> >> > If there is no comparison then the stress levels must be the same> as> > you cannot compare the situations.> >> > > I am saddened and concerned for my HFA sons future but I lose> sleep> > at night and am frantic thinking about my severe childs future.> >> > i do worry to an extent about my future. i am unable to find> suitable> > work for myself, even if i did then i would have to earn £500 a> month> > to stay in my home.> >> > is> > > Vicky> > >> >>> > ---------------------------------------------------------->> No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.9/1158 - Release Date: 28/11/2007 21:11> Yahoo! Answers - Get better answers from someone who knows. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 I don't know when it was suggested that Asperger children don't have issues, I responded to is comment that the stress levels were the same among parents of HFA and Severe, I disagree. I not only have two children at either end of the spectrum I also have 2 brothers with Aspergers and a debatable Mother, and can say absolutely categorically that my lower functioning child is way, way more stressful. The kind of stress is nerves stretched to absolute breaking point, wondering if we can all get through another day, by we I include my HFA son, who also has to experience a very highly charged atmosphere as well as living with his own condition. In the early days when my son would bang his head from the minute he woke up and scream constantly, smear his steady flow of diarrhoea all over the walls and himself 4,5, and 6 times a day, constantly try and get out of windows, run into roads, smell everything and eat nothing, I honestly had suicidal thoughts myself. The turning point for me and my family was meeting Mandi on line a good few yrs ago now and realising there was something out there, this is not the way it had to be. I have no interest in curing people who do not desire it, equally I do not want these same people misrepresenting autism as some kind of gift and therefore undermining everything our children go through be they Aspergers or Autism. This debate is going round in circles but certainly isn't a witchhunt on is or anyone else, people have said they have learnt much from is and that is great, I would like to think she feels the same. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 I can’t imagine that anyone would ever think anything different of you, Anita. I think the debate was a healthy one but it took a pretty unhealthy turn at the end and just happened to be everybody versus is. I hope is is still out there and still feels part of this community. SARA x -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of Anita Sent: 29 November 2007 17:04 To: Autism-Biomedical-Europe Subject: Re: Indie letters > > I would just quickly add that not all Aspergers is 'mild' and to > generalise that it is is divisive and unhelpful to people whose > Aspergers isnt mild. Dear Zoe and others, In looking at my own post I can see how people could read it as divisive. That is not my intention. In fact, I think my view of these things is very inclusive. I happen to believe that every child I've known with a peanut allergy, cancer, asthma, ADHD, Asperger's, arthritis, or learning disabilities (and many other conditions too) ended up with those problems for very similar reasons to why my son has autism: a diet that couldn't protect them; overwhelming environmental assaults; and a selfish, short-sighted society that betrayed them. I am not trying to say that a particular child with an Asperger's diagnosis is less severely affected than my own son who would receive a diagnosis of autistic disorder. I know that may not be true, especially now that we've seen improvements with biomedical interventions. What I am trying to say is that when we have been saddled with words that actually have fairly clear meanings, we need to try to use them carefully because the public's view of our children DOES matter, in terms of services, research, and how we're treated when we're out and about. And from a general perspective, not looking at individual children, I think that one can say it is much better to have language than to not have language, a core difference between autistic disorder and asperger's. I am not by any means trying to say that people whose children are less severely affected should not be on this board. Not at all!! I would welcome anyone who wanted to help their child biomedically, regardless of diagnosis or lack of, and again, I am referring to all of the problems that I've mentioned above and more. What I am trying to do though is stop the growing acceptance that autism IS Bill Gates/Einstein/people who have families, jobs, and the ability to write eloquent letters to newspapers. The differences between autistic and asperger's (for example, language and curiosity in the environment) are significant--I am talking about the diagnostic criteria here, not each individual child. The differences between whatever Bill Gates may or may not be and every last child on this board are even greater, I would suspect. Pretending that those differences do not exist harms our efforts to help our children at certain times. And so, for some conversations, we must acknowledge and respect them. For other conversations, for example the kind we often have on this board when we're talking about the efficacy of MB12 for example, those differences are immaterial, as are the differences between eczema and autism. What I am also trying to stop is the hypothesis put forward by some people that offering biomedical treatments to people with autism (or any of the other things I have mentioned) will somehow eradicate who they are. I asked at autism-mercury once whether recovered kids had lost any of their substantial intellect or special skills and not one parent responded that they had. In fact, the opposite. Parents responded that kids were able to use their intellect and skills in ways that were not possible before biomedical interventions. I realize that this would be different for adults, who have lived with things being different for a very long time, and I certainly respect any adult's decision to not trade what they know and do well with, for the complete unknown. I make the same decisions for myself in regard to other issues. But this decision, on the part of an adult who is living happily, is so far removed from the situation of a child with autism that comparing them is entirely unhelpful. I would also say that having someone take adrenal support so that they can function better without anxiety and panic attacks is running the risk of eradicating who they are is ridiculous. I hope I've been able to communicate how I am by no means trying to diminish any child's situation, or exclude any child from my efforts to change how things are now for something better. I am, in fact, doing my best to advocate for all children, while not losing sight of the fact that some kids genuinely need more help than others in a world of finite resources. And when we need to deal with the public using labels that I don't think we'll be able to change in a meaningful way any time soon, it is very important that those labels are not watered down so that autism, autistic, or asperger's EQUALS Bill Gates. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Good ?, and I don't know if you meant it to be...but it made me laugh out loud, thanks. Re: Indie letters Can someone please clear up a difficulty I am having in this space? Iam repeatedly reading about people engaged in a fight with peopletrying to force autism cures on people who don't want them.But I can't figure out who is actually espousing anything like this -I never see anyone making claims remotely like this. Is there a groupsomewhere that hates high functioning autistics and wants to tie themdown and force "treatments" on them?Who is it that these people are fighting against? > The lady is question is against the> irradication of HFAs against thier will.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 is How many bouncing letters, well I couldn't say must be in the hundreds before the tribunals. Right quality respite, let me see, no I have no respite. My child that has the power of speech has never apologised for being born, he knows despite his disability that he is loved within an inch of his life, and if I could take all his issues on myself I would surely do so, just to give him some peace with himself. Most parents would do anything for their child it isn't unusual autism or no autism. The 2 parents you know who would disagree with me may have their opinion , it is only I who parent my children and that is why I can say in my case of having higher functioning child and lower functioning which one is more stressful and only I can be right in that particular case, it isn't up for question. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 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 29, 2007 Report Share Posted November 29, 2007 ----- Original Message ----- From: zpapacarroll But I really would love a serious answer if someone knows it - allthis discussion (both here and in the press) about eradicatingaustistics and aspergerians - I want to know who they are opposing,who the people are who are trying to annihilate them with cures, andexactly 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, noone 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. 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. First, I never considered her Aspergerishness part of her identity anymore than someone with diabetes considers it part of their identity. Nor did she, I believe, nor will she ever. 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. 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. 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. Aspergerians often, for the most part, lack the ability to see things through others' perspective. 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. 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. 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. 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'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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 ----- Original Message ----- From: atrekkie22 In discussing this with other parents' of Aspies (including my ownsister, my 11 year old nephew is also Asperger) I am told that theirquirks are "part of their identity" and that the fear is if you treatthem they will somehow lose their superior intellect.Yes we do fear that. There was an article written in asperger united afew 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. You have to dig deeper for the "real" fear. Not to get personal but can you imagine what it is? > First, I never considered her Aspergerishness part of her identityanymore than someone with diabetes considers it part of their identity. Diabetes is different to aspergers. Aspergers is to do with how wethink. Diabetes is to do with how we process and store sugar in ourbodies. We can train our minds to think differently but we cant trainour 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.> They have emotional blindness and cannot imagine, even for a momente,what it is like to be anyone else, they have only their lifeexperiences and feelings to consider so they are unable to extrapolatefrom 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 awarefriends. ====>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 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? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Very ill people who smoke are allowed to carry on smoking (because they enjoy it and it's their only pleasure in life) and anyone who suggests that they might not get medical treatment for their cancers etc is usually howled down. But I supposed the ND don't want treatment so that wouldn't apply. It would be a new move to link benefits to treatment so I don't think that would happen. People are allowed to die because they refuse blood transfusions -- although parents who refuse blood transfusions for their children are taken to court so that a judge can over-rule them. The law is quite different on refusing treatment for oneself and others. >>I don't think it would actually happen, I just thought that might be why the ND's were worried. I must have dreamt it up some time back, not sure why! But you are right about the smokers and the obese - who are probably all deficient in Selenium, Vit D and Zinc, all trace mins really because our soils are over farmed and there isn't so much in our food as there was back in the 50's, I saw some report about that yonks ago, how an orange only has 25% of the vitamin C that it used to have, Wittering now, duty calls Mandi x Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Very ill people who smoke are allowed to carry on smoking (because they enjoy it and it's their only pleasure in life) and anyone who suggests that they might not get medical treatment for their cancers etc is usually howled down. But I supposed the ND don't want treatment so that wouldn't apply. It would be a new move to link benefits to treatment so I don't think that would happen. People are allowed to die because they refuse blood transfusions -- although parents who refuse blood transfusions for their children are taken to court so that a judge can over-rule them. The law is quite different on refusing treatment for oneself and others. Sally Mum231ASD@... wrote: > > 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!!!) /* > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.16.9/1158 - Release Date: 28/11/2007 21:11 > Quote Link to comment Share on other sites More sharing options...
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