Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 ND is just the prefered name for some high functioning asperger adults. Many of them do not see themselves as disabled and object to any description, so neuro diverse fits the bill for them. I wonder though how many of them are claiming DLA and are they aware that being diverse is not a criteria for claiming. There are also quite a few self dx people among the ND group, they attach themselves to autism as and when it suits, often refering to themselves as autistic. AFF is a good place to find the people who are infiltrating the NAS. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 Zoe, yes, very good. Margaret > > Hi all > > Am really glad that people are coming together to make their views > known to the NAS - good luck with the open letter, I hope it sparks > a debate - publically, as well as further contributing to the debate > within the NAS. > > Just wanted to clarify with folks on this list re a consensus of > opinion on the neurodiverse movement, biomed/medical treatment and > the NAS........... > > Do you find this acceptable: > > 1. The ND movement should be supported in their fight for self- > determinism and autonomy wherever possible but what should not be > accepted from the ND movement is them thinking they have a right to > speak for all people with autism or that they have a right to oppose > any parents wish to change those parts of their child's autism that > cause the child distress and difficulty. > > 2. The converse would also hold true for parents of children who > want to undertake biomed with their children - they have a right to > be supported to gain access to treatment but no right to impose it > on anyone else or to claim to speak for all children/people with > autism. > > 3. The NAS has a duty, if it is depicting images of neurodiversity > or making reference to neurodiversity, to also depict images of > and/or make reference to children who are in pain (for example, due > to gut issues) and cannot access medical treatment. > > What are peoples views on this please? > > Thanks > > Zoe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 Hear hear to both of you -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of natasa778 Sent: 06 November 2007 19:27 To: Autism-Biomedical-Europe Subject: Re: NAS yes x3. I would only add, under 3. to say they should also mentione findings that regard screwed up immune system in autism, chronic brain and gut inflammation, reduced blood flow to the brain, oxidative stress, toxic body burden, mitochondrial dysfunction etc. that sort of thing. natasa > > Hi all > > Am really glad that people are coming together to make their views > known to the NAS - good luck with the open letter, I hope it sparks > a debate - publically, as well as further contributing to the debate > within the NAS. > > Just wanted to clarify with folks on this list re a consensus of > opinion on the neurodiverse movement, biomed/medical treatment and > the NAS........... > > Do you find this acceptable: > > 1. The ND movement should be supported in their fight for self- > determinism and autonomy wherever possible but what should not be > accepted from the ND movement is them thinking they have a right to > speak for all people with autism or that they have a right to oppose > any parents wish to change those parts of their child's autism that > cause the child distress and difficulty. > > 2. The converse would also hold true for parents of children who > want to undertake biomed with their children - they have a right to > be supported to gain access to treatment but no right to impose it > on anyone else or to claim to speak for all children/people with > autism. > > 3. The NAS has a duty, if it is depicting images of neurodiversity > or making reference to neurodiversity, to also depict images of > and/or make reference to children who are in pain (for example, due > to gut issues) and cannot access medical treatment. > > What are peoples views on this please? > > Thanks > > Zoe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 I would say that ND is a behavioural self-diagnosis. Those who believe themselves to be ND are probably right. I don't see why they need self-determinism or autonomy or feel they haven't got it. Who are they being persecuted by? They have every right to declare themselves ND and get on with it. I don't mind. What I mind is them hijacking a charitable organisation. Wanting self-determination and autonomy is not a charitable purpose. I want it myself. If the criteria for a ND charity is wanting self-determination and autonomy for those who believe themselves to be ND then they should try shaking collecting tins with this slogan and see how much they collect. More seriously Zoe you need an excluding criteria -- everyone in the whole world is ND. What makes a ND suitable for the NAS to support. A diagnosis of some description or just " personal identification " with ASD? The ND..............well who are they exactly? I would say that the NAS is a charity with necessarily charitable purposes. Look at those and see how the ND self-determination and autonomy stuff fits with the founding principles of the organisation Sally Zoe wrote: > > Hi all > > Am really glad that people are coming together to make their views > known to the NAS - good luck with the open letter, I hope it sparks > a debate - publically, as well as further contributing to the debate > within the NAS. > > Just wanted to clarify with folks on this list re a consensus of > opinion on the neurodiverse movement, biomed/medical treatment and > the NAS......... .. > > Do you find this acceptable: > > 1. The ND movement should be supported in their fight for self- > determinism and autonomy wherever possible but what should not be > accepted from the ND movement is them thinking they have a right to > speak for all people with autism or that they have a right to oppose > any parents wish to change those parts of their child's autism that > cause the child distress and difficulty. > > 2. The converse would also hold true for parents of children who > want to undertake biomed with their children - they have a right to > be supported to gain access to treatment but no right to impose it > on anyone else or to claim to speak for all children/people with > autism. > > 3. The NAS has a duty, if it is depicting images of neurodiversity > or making reference to neurodiversity, to also depict images of > and/or make reference to children who are in pain (for example, due > to gut issues) and cannot access medical treatment. > > What are peoples views on this please? > > Thanks > > Zoe > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 Self determinism and autonomy are my words, not NAS words. That is how I interpret what people in the ND movement want, from the various conversations that I have had with quite a few of them now. Feeling that you need self determinism and autonomy generally comes from feeling that you are a minority group (which they are) and that you are persecuted (which may or may not be true, but is definitely how they feel). They feel persecuted when other people say that we should change autism or cure autism or defeat autism. Someone once explained to me that this is because their autism is so much a part of themselves that they feel to attack autism is to attack a core part of them. It is similar to what happened in the deaf movement with cochlea implants - some deaf people embraced implants (a change to their deafness) and some out and out refused implants because of their political stance that their deafness was an integral part of them. (I am not comparing autism to deafness here BTW, just using what happened in the deaf movement to illustrate a similar principle about autonomy) As to the ND movement 'hijacking the NAS' - I dont know what the evidence is for that and I would be very interested to know how many of these hijackers there are and who they are. There are certainly no members of AFF involved either in the NAS Council or Board and in fact, the folks with autism on both bodies have distanced themselves from AFF, because AFF is too radical and does not want to work in partnership with other autism organisations. I also know that there are moves to set up a seperate organisation (which may or may not end up being a charity) that is purely for ND people, and campaigns on ND issues. Re we are all neuro-diverse - yes, we are, but we all know that in autism politics ND means people with autism who do not want to change their autism. If you agree that they have that right (as long as they dont impose it on anyone else) then why shouldnt the NAS support ND people? NAS is there to represent and support the many faces of autism and to do otherwise (eg to exclude ND folk because you dont like their politics) would most definitely be against the NAS's charitable objects. That said, I agree that the NAS needs to do more to create a balance in its portrayal of all autisms and that its public image is too ND heavy and will be making my own representations about this (hopefully with some other Councillors) inside the NAS. Zoe > > > > Hi all > > > > Am really glad that people are coming together to make their views > > known to the NAS - good luck with the open letter, I hope it sparks > > a debate - publically, as well as further contributing to the debate > > within the NAS. > > > > Just wanted to clarify with folks on this list re a consensus of > > opinion on the neurodiverse movement, biomed/medical treatment and > > the NAS......... .. > > > > Do you find this acceptable: > > > > 1. The ND movement should be supported in their fight for self- > > determinism and autonomy wherever possible but what should not be > > accepted from the ND movement is them thinking they have a right to > > speak for all people with autism or that they have a right to oppose > > any parents wish to change those parts of their child's autism that > > cause the child distress and difficulty. > > > > 2. The converse would also hold true for parents of children who > > want to undertake biomed with their children - they have a right to > > be supported to gain access to treatment but no right to impose it > > on anyone else or to claim to speak for all children/people with > > autism. > > > > 3. The NAS has a duty, if it is depicting images of neurodiversity > > or making reference to neurodiversity, to also depict images of > > and/or make reference to children who are in pain (for example, due > > to gut issues) and cannot access medical treatment. > > > > What are peoples views on this please? > > > > Thanks > > > > Zoe > > > > > > ----------------------------------------------------------------- ------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 I think you need a definition of ND which is tied to medical diagnosis -- otherwise any paranoid person who feels misunderstood will qualify. Or anyone jumping on what is becoming a fashionable bandwagon. Also, I don't think medical treatment for autistic people is just for pain etc. My daughter doesn't have pain as far as I can tell but her autism has wrecked her life. She isn't capable of asking for self-determination and autonomy let alone operating it. I want her autism treated and cured. So treating her pain.............she hasn't got any. Nothing for her from the NAS then. Is she therefore OK? She can't talk. Just a matter of understanding her properly? She doesn't want to talk? She chooses not to? She will spend the majority of her life in a residential care home -- open to any abuse, unable to complain etc etc. That's a her human right ......to be open to abuse and exploitation....it would be wrong to think of treating/changing her? Mmm? You are conversing with the ND and working out what they want. You can't converse with my daughter. xx Sally Zoe wrote: > > Self determinism and autonomy are my words, not NAS words. That is > how I interpret what people in the ND movement want, from the > various conversations that I have had with quite a few of them now. > > Feeling that you need self determinism and autonomy generally comes > from feeling that you are a minority group (which they are) and that > you are persecuted (which may or may not be true, but is definitely > how they feel). > > They feel persecuted when other people say that we should change > autism or cure autism or defeat autism. Someone once explained to > me that this is because their autism is so much a part of themselves > that they feel to attack autism is to attack a core part of them. > > It is similar to what happened in the deaf movement with cochlea > implants - some deaf people embraced implants (a change to their > deafness) and some out and out refused implants because of their > political stance that their deafness was an integral part of them. > > (I am not comparing autism to deafness here BTW, just using what > happened in the deaf movement to illustrate a similar principle > about autonomy) > > As to the ND movement 'hijacking the NAS' - I dont know what the > evidence is for that and I would be very interested to know how many > of these hijackers there are and who they are. > > There are certainly no members of AFF involved either in the NAS > Council or Board and in fact, the folks with autism on both bodies > have distanced themselves from AFF, because AFF is too radical and > does not want to work in partnership with other autism organisations. > > I also know that there are moves to set up a seperate organisation > (which may or may not end up being a charity) that is purely for ND > people, and campaigns on ND issues. > > Re we are all neuro-diverse - yes, we are, but we all know that in > autism politics ND means people with autism who do not want to > change their autism. If you agree that they have that right (as > long as they dont impose it on anyone else) then why shouldnt the > NAS support ND people? > > NAS is there to represent and support the many faces of autism and > to do otherwise (eg to exclude ND folk because you dont like their > politics) would most definitely be against the NAS's charitable > objects. > > That said, I agree that the NAS needs to do more to create a balance > in its portrayal of all autisms and that its public image is too ND > heavy and will be making my own representations about this > (hopefully with some other Councillors) inside the NAS. > > Zoe > > > > > > > > Hi all > > > > > > Am really glad that people are coming together to make their > views > > > known to the NAS - good luck with the open letter, I hope it > sparks > > > a debate - publically, as well as further contributing to the > debate > > > within the NAS. > > > > > > Just wanted to clarify with folks on this list re a consensus of > > > opinion on the neurodiverse movement, biomed/medical treatment > and > > > the NAS......... .. > > > > > > Do you find this acceptable: > > > > > > 1. The ND movement should be supported in their fight for self- > > > determinism and autonomy wherever possible but what should not be > > > accepted from the ND movement is them thinking they have a right > to > > > speak for all people with autism or that they have a right to > oppose > > > any parents wish to change those parts of their child's autism > that > > > cause the child distress and difficulty. > > > > > > 2. The converse would also hold true for parents of children who > > > want to undertake biomed with their children - they have a right > to > > > be supported to gain access to treatment but no right to impose > it > > > on anyone else or to claim to speak for all children/people with > > > autism. > > > > > > 3. The NAS has a duty, if it is depicting images of > neurodiversity > > > or making reference to neurodiversity, to also depict images of > > > and/or make reference to children who are in pain (for example, > due > > > to gut issues) and cannot access medical treatment. > > > > > > What are peoples views on this please? > > > > > > Thanks > > > > > > Zoe > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > ------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > Date: 05/11/2007 19:11 > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 It's not just confusing to the public it is just not do-able, how can one organization keep both camps happy. Zoe makes the point that ND participation with the NAS should not force their opinion on others, I agree with that, but I wonder if that would be acceptable to them as they look on autism as a "culture" and anyone trying to cure from any means is an attack on their culture. This is why "Think Differently" is very much an ND point of view in the main. I would like "Think Cure" myself lol, but then the ND people would be outraged. How can the 2 groups meet in the middle? Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Ok, this: " That's a her human right ......to be open to abuse and exploitation....it would be wrong to think of treating/changing her? Mmm? " is not on. It now feels like a personal attack on me. I am clearly not saying that it isnt ok to treat/change your child. I dont understand how you can consider accusing me of this given everything I have said. Yes I am talking to the ND folks - and no, I cant converse with your daughter, any more than you can represent the interests of my son...................but you can represent the interests of your daughter and that is the important thing. That is the right I am inside the NAS fighting to protect, rather than sitting on the outside slagging them off. I am on your side, but if you dont want to work with me, fine - I have better things to do than getting into protracted arguments that are going nowhere and I will spend my energies with people who want to find common ground and go forward positively together. Zoe > > > > > > > > Hi all > > > > > > > > Am really glad that people are coming together to make their > > views > > > > known to the NAS - good luck with the open letter, I hope it > > sparks > > > > a debate - publically, as well as further contributing to the > > debate > > > > within the NAS. > > > > > > > > Just wanted to clarify with folks on this list re a consensus of > > > > opinion on the neurodiverse movement, biomed/medical treatment > > and > > > > the NAS......... .. > > > > > > > > Do you find this acceptable: > > > > > > > > 1. The ND movement should be supported in their fight for self- > > > > determinism and autonomy wherever possible but what should not be > > > > accepted from the ND movement is them thinking they have a right > > to > > > > speak for all people with autism or that they have a right to > > oppose > > > > any parents wish to change those parts of their child's autism > > that > > > > cause the child distress and difficulty. > > > > > > > > 2. The converse would also hold true for parents of children who > > > > want to undertake biomed with their children - they have a right > > to > > > > be supported to gain access to treatment but no right to impose > > it > > > > on anyone else or to claim to speak for all children/people with > > > > autism. > > > > > > > > 3. The NAS has a duty, if it is depicting images of > > neurodiversity > > > > or making reference to neurodiversity, to also depict images of > > > > and/or make reference to children who are in pain (for example, > > due > > > > to gut issues) and cannot access medical treatment. > > > > > > > > What are peoples views on this please? > > > > > > > > Thanks > > > > > > > > Zoe > > > > > > > > > > > > ------------ --------- --------- --------- --------- -------- - - > > ------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > ----------------------------------------------------------------- ------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Zoe, think about it. You are fighting to protect my right to protect my daughter. Why should you have to fight? Sally Zoe wrote: > > Ok, this: > > " That's a her human right > .....to be open to abuse and exploitation. ...it would be wrong to > think > of treating/changing her? Mmm? " > > is not on. It now feels like a personal attack on me. > > I am clearly not saying that it isnt ok to treat/change your child. > > I dont understand how you can consider accusing me of this given > everything I have said. > > Yes I am talking to the ND folks - and no, I cant converse with your > daughter, any more than you can represent the interests of my > son......... ......... .but you can represent the interests of your > daughter and that is the important thing. That is the right I am > inside the NAS fighting to protect, rather than sitting on the > outside slagging them off. > > I am on your side, but if you dont want to work with me, fine - I > have better things to do than getting into protracted arguments that > are going nowhere and I will spend my energies with people who want > to find common ground and go forward positively together. > > Zoe > > > > > > > > > > > > Hi all > > > > > > > > > > Am really glad that people are coming together to make their > > > views > > > > > known to the NAS - good luck with the open letter, I hope it > > > sparks > > > > > a debate - publically, as well as further contributing to the > > > debate > > > > > within the NAS. > > > > > > > > > > Just wanted to clarify with folks on this list re a > consensus of > > > > > opinion on the neurodiverse movement, biomed/medical > treatment > > > and > > > > > the NAS......... .. > > > > > > > > > > Do you find this acceptable: > > > > > > > > > > 1. The ND movement should be supported in their fight for > self- > > > > > determinism and autonomy wherever possible but what should > not be > > > > > accepted from the ND movement is them thinking they have a > right > > > to > > > > > speak for all people with autism or that they have a right to > > > oppose > > > > > any parents wish to change those parts of their child's > autism > > > that > > > > > cause the child distress and difficulty. > > > > > > > > > > 2. The converse would also hold true for parents of children > who > > > > > want to undertake biomed with their children - they have a > right > > > to > > > > > be supported to gain access to treatment but no right to > impose > > > it > > > > > on anyone else or to claim to speak for all children/people > with > > > > > autism. > > > > > > > > > > 3. The NAS has a duty, if it is depicting images of > > > neurodiversity > > > > > or making reference to neurodiversity, to also depict images > of > > > > > and/or make reference to children who are in pain (for > example, > > > due > > > > > to gut issues) and cannot access medical treatment. > > > > > > > > > > What are peoples views on this please? > > > > > > > > > > Thanks > > > > > > > > > > Zoe > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- -------- > - - > > > ------- > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG Free Edition. > > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > ------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > Date: 05/11/2007 19:11 > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Sorry to butt into someone else’s discussion but do you think that actually there isn’t room for both in the same society? Does anyone know if the American NAS have an ND element? Should NAS rename itself as the society for neuro diversity? And let TA represent the rest of the autism community? I think someone mentioned on here once (was it Alison) that even those parents not doing biomed are often annoyed with the NAS for being slow/ unhelpful, etc. Surely if ND people were in a separate organisation and had a name that did not imply we were all in the same boat, then both groups would be able to get on with things much better. SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of Eva family Sent: 07 November 2007 08:58 To: Autism-Biomedical-Europe Subject: Re: Re: NAS Zoe, think about it. You are fighting to protect my right to protect my daughter. Why should you have to fight? Sally Zoe wrote: > > Ok, this: > > " That's a her human right > .....to be open to abuse and exploitation. ...it would be wrong to > think > of treating/changing her? Mmm? " > > is not on. It now feels like a personal attack on me. > > I am clearly not saying that it isnt ok to treat/change your child. > > I dont understand how you can consider accusing me of this given > everything I have said. > > Yes I am talking to the ND folks - and no, I cant converse with your > daughter, any more than you can represent the interests of my > son......... ......... .but you can represent the interests of your > daughter and that is the important thing. That is the right I am > inside the NAS fighting to protect, rather than sitting on the > outside slagging them off. > > I am on your side, but if you dont want to work with me, fine - I > have better things to do than getting into protracted arguments that > are going nowhere and I will spend my energies with people who want > to find common ground and go forward positively together. > > Zoe > > > > > > > > > > > > Hi all > > > > > > > > > > Am really glad that people are coming together to make their > > > views > > > > > known to the NAS - good luck with the open letter, I hope it > > > sparks > > > > > a debate - publically, as well as further contributing to the > > > debate > > > > > within the NAS. > > > > > > > > > > Just wanted to clarify with folks on this list re a > consensus of > > > > > opinion on the neurodiverse movement, biomed/medical > treatment > > > and > > > > > the NAS......... .. > > > > > > > > > > Do you find this acceptable: > > > > > > > > > > 1. The ND movement should be supported in their fight for > self- > > > > > determinism and autonomy wherever possible but what should > not be > > > > > accepted from the ND movement is them thinking they have a > right > > > to > > > > > speak for all people with autism or that they have a right to > > > oppose > > > > > any parents wish to change those parts of their child's > autism > > > that > > > > > cause the child distress and difficulty. > > > > > > > > > > 2. The converse would also hold true for parents of children > who > > > > > want to undertake biomed with their children - they have a > right > > > to > > > > > be supported to gain access to treatment but no right to > impose > > > it > > > > > on anyone else or to claim to speak for all children/people > with > > > > > autism. > > > > > > > > > > 3. The NAS has a duty, if it is depicting images of > > > neurodiversity > > > > > or making reference to neurodiversity, to also depict images > of > > > > > and/or make reference to children who are in pain (for > example, > > > due > > > > > to gut issues) and cannot access medical treatment. > > > > > > > > > > What are peoples views on this please? > > > > > > > > > > Thanks > > > > > > > > > > Zoe > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- -------- > - - > > > ------- > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG Free Edition. > > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > ------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > Date: 05/11/2007 19:11 > > > > > > > > ---------------------------------------------------------- > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 I think you need a definition of ND which is tied to medical diagnosis -- otherwise any paranoid person who feels misunderstood will qualify. Or anyone jumping on what is becoming a fashionable bandwagon. I think that it doesn’t matter who jumps on what bandwagon. (sorry, reading these posts backwards!) I think what matters is that it doesn’t harm our campaign to help our children. I think it is very confusing to the public to have some people desperate for a cure and some people desperate to remain autistic’. Perhaps we should campaign for NAS to change its name???? Also, I don't think medical treatment for autistic people is just for pain etc. My daughter doesn't have pain as far as I can tell but her autism has wrecked her life. She isn't capable of asking for self-determination and autonomy let alone operating it. I want her autism treated and cured. So treating her pain.............she hasn't got any. Nothing for her from the NAS then. Is she therefore OK? She can't talk. Just a matter of understanding her properly? She doesn't want to talk? She chooses not to? She will spend the majority of her life in a residential care home -- open to any abuse, unable to complain etc etc. That's a her human right ......to be open to abuse and exploitation....it would be wrong to think of treating/changing her? Mmm? You are conversing with the ND and working out what they want. You can't converse with my daughter. xx Sally Zoe wrote: > > Self determinism and autonomy are my words, not NAS words. That is > how I interpret what people in the ND movement want, from the > various conversations that I have had with quite a few of them now. > > Feeling that you need self determinism and autonomy generally comes > from feeling that you are a minority group (which they are) and that > you are persecuted (which may or may not be true, but is definitely > how they feel). > > They feel persecuted when other people say that we should change > autism or cure autism or defeat autism. Someone once explained to > me that this is because their autism is so much a part of themselves > that they feel to attack autism is to attack a core part of them. > > It is similar to what happened in the deaf movement with cochlea > implants - some deaf people embraced implants (a change to their > deafness) and some out and out refused implants because of their > political stance that their deafness was an integral part of them. > > (I am not comparing autism to deafness here BTW, just using what > happened in the deaf movement to illustrate a similar principle > about autonomy) > > As to the ND movement 'hijacking the NAS' - I dont know what the > evidence is for that and I would be very interested to know how many > of these hijackers there are and who they are. > > There are certainly no members of AFF involved either in the NAS > Council or Board and in fact, the folks with autism on both bodies > have distanced themselves from AFF, because AFF is too radical and > does not want to work in partnership with other autism organisations. > > I also know that there are moves to set up a seperate organisation > (which may or may not end up being a charity) that is purely for ND > people, and campaigns on ND issues. > > Re we are all neuro-diverse - yes, we are, but we all know that in > autism politics ND means people with autism who do not want to > change their autism. If you agree that they have that right (as > long as they dont impose it on anyone else) then why shouldnt the > NAS support ND people? > > NAS is there to represent and support the many faces of autism and > to do otherwise (eg to exclude ND folk because you dont like their > politics) would most definitely be against the NAS's charitable > objects. > > That said, I agree that the NAS needs to do more to create a balance > in its portrayal of all autisms and that its public image is too ND > heavy and will be making my own representations about this > (hopefully with some other Councillors) inside the NAS. > > Zoe > > > > > > > > Hi all > > > > > > Am really glad that people are coming together to make their > views > > > known to the NAS - good luck with the open letter, I hope it > sparks > > > a debate - publically, as well as further contributing to the > debate > > > within the NAS. > > > > > > Just wanted to clarify with folks on this list re a consensus of > > > opinion on the neurodiverse movement, biomed/medical treatment > and > > > the NAS......... .. > > > > > > Do you find this acceptable: > > > > > > 1. The ND movement should be supported in their fight for self- > > > determinism and autonomy wherever possible but what should not be > > > accepted from the ND movement is them thinking they have a right > to > > > speak for all people with autism or that they have a right to > oppose > > > any parents wish to change those parts of their child's autism > that > > > cause the child distress and difficulty. > > > > > > 2. The converse would also hold true for parents of children who > > > want to undertake biomed with their children - they have a right > to > > > be supported to gain access to treatment but no right to impose > it > > > on anyone else or to claim to speak for all children/people with > > > autism. > > > > > > 3. The NAS has a duty, if it is depicting images of > neurodiversity > > > or making reference to neurodiversity, to also depict images of > > > and/or make reference to children who are in pain (for example, > due > > > to gut issues) and cannot access medical treatment. > > > > > > What are peoples views on this please? > > > > > > Thanks > > > > > > Zoe > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > ------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > Date: 05/11/2007 19:11 > > > > > > > > ---------------------------------------------------------- > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: 05/11/2007 19:11 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 We ought to try and get into the heart of the NAS and then we can access its money and clout and change its direction, IMHO. Margaret > > > > > > > > > > > > Hi all > > > > > > > > > > > > Am really glad that people are coming together to make their > > > > views > > > > > > known to the NAS - good luck with the open letter, I hope it > > > > sparks > > > > > > a debate - publically, as well as further contributing to the > > > > debate > > > > > > within the NAS. > > > > > > > > > > > > Just wanted to clarify with folks on this list re a > > consensus of > > > > > > opinion on the neurodiverse movement, biomed/medical > > treatment > > > > and > > > > > > the NAS......... .. > > > > > > > > > > > > Do you find this acceptable: > > > > > > > > > > > > 1. The ND movement should be supported in their fight for > > self- > > > > > > determinism and autonomy wherever possible but what should > > not be > > > > > > accepted from the ND movement is them thinking they have a > > right > > > > to > > > > > > speak for all people with autism or that they have a right to > > > > oppose > > > > > > any parents wish to change those parts of their child's > > autism > > > > that > > > > > > cause the child distress and difficulty. > > > > > > > > > > > > 2. The converse would also hold true for parents of children > > who > > > > > > want to undertake biomed with their children - they have a > > right > > > > to > > > > > > be supported to gain access to treatment but no right to > > impose > > > > it > > > > > > on anyone else or to claim to speak for all children/people > > with > > > > > > autism. > > > > > > > > > > > > 3. The NAS has a duty, if it is depicting images of > > > > neurodiversity > > > > > > or making reference to neurodiversity, to also depict images > > of > > > > > > and/or make reference to children who are in pain (for > > example, > > > > due > > > > > > to gut issues) and cannot access medical treatment. > > > > > > > > > > > > What are peoples views on this please? > > > > > > > > > > > > Thanks > > > > > > > > > > > > Zoe > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- ----- --- > > - - > > > > ------- > > > > > > > > > > > > No virus found in this incoming message. > > > > > > Checked by AVG Free Edition. > > > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > ------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: > 05/11/2007 19:11 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 " I think it is very confusing to the public to have some people desperate for a cure and some people desperate to remain autistic " Yes. In a nutshell, yes Sally Sass and Rem wrote: > > I think you need a definition of ND which is tied to medical diagnosis > -- otherwise any paranoid person who feels misunderstood will qualify. > Or anyone jumping on what is becoming a fashionable bandwagon. > > I think that it doesn’t matter who jumps on what bandwagon. (sorry, > reading these posts backwards!) I think what matters is that it > doesn’t harm our campaign to help our children. I think it is very > confusing to the public to have some people desperate for a cure and > some people desperate to remain autistic’. Perhaps we should campaign > for NAS to change its name???? > > > Also, I don't think medical treatment for autistic people is just for > pain etc. My daughter doesn't have pain as far as I can tell but her > autism has wrecked her life. She isn't capable of asking for > self-determination and autonomy let alone operating it. I want her > autism treated and cured. So treating her pain........ .....she hasn't > got any. Nothing for her from the NAS then. > > Is she therefore OK? She can't talk. Just a matter of understanding her > properly? She doesn't want to talk? She chooses not to? > > She will spend the majority of her life in a residential care home -- > open to any abuse, unable to complain etc etc. That's a her human right > .....to be open to abuse and exploitation. ...it would be wrong to think > of treating/changing her? Mmm? > > You are conversing with the ND and working out what they want. You can't > converse with my daughter. > > xx Sally > > Zoe wrote: > > > > Self determinism and autonomy are my words, not NAS words. That is > > how I interpret what people in the ND movement want, from the > > various conversations that I have had with quite a few of them now. > > > > Feeling that you need self determinism and autonomy generally comes > > from feeling that you are a minority group (which they are) and that > > you are persecuted (which may or may not be true, but is definitely > > how they feel). > > > > They feel persecuted when other people say that we should change > > autism or cure autism or defeat autism. Someone once explained to > > me that this is because their autism is so much a part of themselves > > that they feel to attack autism is to attack a core part of them. > > > > It is similar to what happened in the deaf movement with cochlea > > implants - some deaf people embraced implants (a change to their > > deafness) and some out and out refused implants because of their > > political stance that their deafness was an integral part of them. > > > > (I am not comparing autism to deafness here BTW, just using what > > happened in the deaf movement to illustrate a similar principle > > about autonomy) > > > > As to the ND movement 'hijacking the NAS' - I dont know what the > > evidence is for that and I would be very interested to know how many > > of these hijackers there are and who they are. > > > > There are certainly no members of AFF involved either in the NAS > > Council or Board and in fact, the folks with autism on both bodies > > have distanced themselves from AFF, because AFF is too radical and > > does not want to work in partnership with other autism organisations. > > > > I also know that there are moves to set up a seperate organisation > > (which may or may not end up being a charity) that is purely for ND > > people, and campaigns on ND issues. > > > > Re we are all neuro-diverse - yes, we are, but we all know that in > > autism politics ND means people with autism who do not want to > > change their autism. If you agree that they have that right (as > > long as they dont impose it on anyone else) then why shouldnt the > > NAS support ND people? > > > > NAS is there to represent and support the many faces of autism and > > to do otherwise (eg to exclude ND folk because you dont like their > > politics) would most definitely be against the NAS's charitable > > objects. > > > > That said, I agree that the NAS needs to do more to create a balance > > in its portrayal of all autisms and that its public image is too ND > > heavy and will be making my own representations about this > > (hopefully with some other Councillors) inside the NAS. > > > > Zoe > > > > > > > > > > > > Hi all > > > > > > > > Am really glad that people are coming together to make their > > views > > > > known to the NAS - good luck with the open letter, I hope it > > sparks > > > > a debate - publically, as well as further contributing to the > > debate > > > > within the NAS. > > > > > > > > Just wanted to clarify with folks on this list re a consensus of > > > > opinion on the neurodiverse movement, biomed/medical treatment > > and > > > > the NAS......... .. > > > > > > > > Do you find this acceptable: > > > > > > > > 1. The ND movement should be supported in their fight for self- > > > > determinism and autonomy wherever possible but what should not be > > > > accepted from the ND movement is them thinking they have a right > > to > > > > speak for all people with autism or that they have a right to > > oppose > > > > any parents wish to change those parts of their child's autism > > that > > > > cause the child distress and difficulty. > > > > > > > > 2. The converse would also hold true for parents of children who > > > > want to undertake biomed with their children - they have a right > > to > > > > be supported to gain access to treatment but no right to impose > > it > > > > on anyone else or to claim to speak for all children/people with > > > > autism. > > > > > > > > 3. The NAS has a duty, if it is depicting images of > > neurodiversity > > > > or making reference to neurodiversity, to also depict images of > > > > and/or make reference to children who are in pain (for example, > > due > > > > to gut issues) and cannot access medical treatment. > > > > > > > > What are peoples views on this please? > > > > > > > > Thanks > > > > > > > > Zoe > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > ------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: > 05/11/2007 19:11 > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.503 / Virus Database: 269.15.23/1114 - Release Date: 06/11/2007 20:05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Margaret wrote: " we should get into the heart of the NAS and take it over...... " Margaret you think bigger than the rest of us xxSally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2007 Report Share Posted November 7, 2007 Hello Sara Feel free to butt in - its an open discussion I think we (biomedders and ND people) have a lot more in common than not eg we all want: better support services for ASD people better education for ASD people more awareness and acceptance of autism autism research to be better funded (we may disagree about the research, but we know we want to govt to give more money to autism research in general) better training for practitioners better access to improved diagnosis why not work together on these issues? Strength in numbers etc. I did mention in a previous e mail that there are moves to set up a ND organisation for ND people........and these ND people already acknowledge that they want to work with non-ND allies. Does there need to be a total split? Why cant we work together where these is common ground? Zoe > > > > > > > > > > > > Hi all > > > > > > > > > > > > Am really glad that people are coming together to make their > > > > views > > > > > > known to the NAS - good luck with the open letter, I hope it > > > > sparks > > > > > > a debate - publically, as well as further contributing to the > > > > debate > > > > > > within the NAS. > > > > > > > > > > > > Just wanted to clarify with folks on this list re a > > consensus of > > > > > > opinion on the neurodiverse movement, biomed/medical > > treatment > > > > and > > > > > > the NAS......... .. > > > > > > > > > > > > Do you find this acceptable: > > > > > > > > > > > > 1. The ND movement should be supported in their fight for > > self- > > > > > > determinism and autonomy wherever possible but what should > > not be > > > > > > accepted from the ND movement is them thinking they have a > > right > > > > to > > > > > > speak for all people with autism or that they have a right to > > > > oppose > > > > > > any parents wish to change those parts of their child's > > autism > > > > that > > > > > > cause the child distress and difficulty. > > > > > > > > > > > > 2. The converse would also hold true for parents of children > > who > > > > > > want to undertake biomed with their children - they have a > > right > > > > to > > > > > > be supported to gain access to treatment but no right to > > impose > > > > it > > > > > > on anyone else or to claim to speak for all children/people > > with > > > > > > autism. > > > > > > > > > > > > 3. The NAS has a duty, if it is depicting images of > > > > neurodiversity > > > > > > or making reference to neurodiversity, to also depict images > > of > > > > > > and/or make reference to children who are in pain (for > > example, > > > > due > > > > > > to gut issues) and cannot access medical treatment. > > > > > > > > > > > > What are peoples views on this please? > > > > > > > > > > > > Thanks > > > > > > > > > > > > Zoe > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- ---- ---- > > - - > > > > ------- > > > > > > > > > > > > No virus found in this incoming message. > > > > > > Checked by AVG Free Edition. > > > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- -------- - - > > ------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release > > Date: 05/11/2007 19:11 > > > > > > > > > > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.503 / Virus Database: 269.15.22/1112 - Release Date: > 05/11/2007 19:11 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 There are people working really hard on the inside of the NAS to change things.........not just things that relate to biomed. It wont go as fast as we want it to, but at least it is beginning. The NAS Board of Trustees has just ratified a position statement on gut issues in autism. Its not on the web site yet, but I expect it could be obtained by anyone who wanted to e mail the NAS media dept asking a direct question about NAS's position on gut issues and autism. A position statement is a big step forward (for the NAS) imho - NAS position may not be exactly what we want it to be of course, but once the NAS takes a position on something (ie it says 'there is a need for xyz') then members can ask the NAS what it is doing as an organisation to ensure that the need is met. It also opens up opportunities for joint working - as common ground can be more easily identified. It might be an appropriate time for an organisation with access to data on gut issues in autism to share that information with the NAS and ask the NAS how it can support the organisation in getting the gut issues actioned. Zoe > > http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368 > > interestingly I have just stumbled on this section referring to > Rimaland and ARI on NAS website > > was somewhat surprised!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 I will mail them today Zoe -- and I guess you are referring to yourself when you say " persons working really hard etc " so congratulations. I agree 100% that the NAS position is important. It is respectable and where it goes no one can shout " quack " or " desperate parent " . Who should I mail? New chief exec? Sally Zoe wrote: > > There are people working really hard on the inside of the NAS to > change things.........not just things that relate to biomed. > > It wont go as fast as we want it to, but at least it is beginning. > > The NAS Board of Trustees has just ratified a position statement on > gut issues in autism. Its not on the web site yet, but I expect it > could be obtained by anyone who wanted to e mail the NAS media dept > asking a direct question about NAS's position on gut issues and autism. > > A position statement is a big step forward (for the NAS) imho - NAS > position may not be exactly what we want it to be of course, but once > the NAS takes a position on something (ie it says 'there is a need for > xyz') then members can ask the NAS what it is doing as an organisation > to ensure that the need is met. > > It also opens up opportunities for joint working - as common ground > can be more easily identified. > > It might be an appropriate time for an organisation with access to > data on gut issues in autism to share that information with the NAS > and ask the NAS how it can support the organisation in getting the gut > issues actioned. > > Zoe > > > > > > http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368 > <http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368> > > > > interestingly I have just stumbled on this section referring to > > Rimaland and ARI on NAS website > > > > was somewhat surprised!!! > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.21.8/1340 - Release Date: 23/03/2008 18:50 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 If several people mailed them over the next few weeks, they might decide it is simpler to put it on the website Sally Eva family wrote: > > I will mail them today Zoe -- and I guess you are referring to yourself > when you say " persons working really hard etc " so congratulations. I > agree 100% that the NAS position is important. It is respectable and > where it goes no one can shout " quack " or " desperate parent " . Who should > I mail? New chief exec? > Sally > > Zoe wrote: > > > > There are people working really hard on the inside of the NAS to > > change things.........not just things that relate to biomed. > > > > It wont go as fast as we want it to, but at least it is beginning. > > > > The NAS Board of Trustees has just ratified a position statement on > > gut issues in autism. Its not on the web site yet, but I expect it > > could be obtained by anyone who wanted to e mail the NAS media dept > > asking a direct question about NAS's position on gut issues and autism. > > > > A position statement is a big step forward (for the NAS) imho - NAS > > position may not be exactly what we want it to be of course, but once > > the NAS takes a position on something (ie it says 'there is a need for > > xyz') then members can ask the NAS what it is doing as an organisation > > to ensure that the need is met. > > > > It also opens up opportunities for joint working - as common ground > > can be more easily identified. > > > > It might be an appropriate time for an organisation with access to > > data on gut issues in autism to share that information with the NAS > > and ask the NAS how it can support the organisation in getting the gut > > issues actioned. > > > > Zoe > > > > > > > > > > http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368 > <http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368> > > <http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368 > <http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368>> > > > > > > interestingly I have just stumbled on this section referring to > > > Rimaland and ARI on NAS website > > > > > > was somewhat surprised!!! > > > > > > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.21.8/1340 - Release Date: > 23/03/2008 18:50 > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.21.8/1340 - Release Date: 23/03/2008 18:50 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Sally There are several people who are working hard to change things, I do my bit but there are others who do much more - Pamela Reitemeier would be one - she is Chair of Council (Senior Councillor) and she has been absolutely pivotal in changing the way Council works and the relationship between Council, Trustees and staff (massively) for the better. This has paved the way for new ways of thinking about things within the NAS and new ways of working..........she really is an unsung hero, the amount of time and energy she puts in and it is very much a thankless task. There is also Alison, and strange as it may seem, Mike Stanton........who may be on the other side of the fence when it comes to biomed but is in agreement on many many other issues that we are all concerned about, including the need for change and the need for NAS to become more responsive to its members (whatever 'side of the fence' they are on). He was very supportive of the position statement on gut issues. Zoe > > > > > > http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368 > > <http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1385 & a=3368> > > > > > > interestingly I have just stumbled on this section referring to > > > Rimaland and ARI on NAS website > > > > > > was somewhat surprised!!! > > > > > > > > > ----------------------------------------------------------------- ------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.21.8/1340 - Release Date: 23/03/2008 18:50 > > > Quote Link to comment Share on other sites More sharing options...
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