Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Rory, That is really strange and downright incompetant that such a group would let someone with poor language skills be taking the minutes. They need a good person for that job, one with good language skills and the ability to write shorthand wouldn't hurt either. That's just insane. This was a bad way to run things. Completely incompetant. It doesn't sound to me like whoever set this up isn't taking it seriously. It sounds like you may have been the only Aspie there, at least the only adult one. They should have been very interested in what you had to say since it was indeed a personal account from someone who has lived with AS. I don't blame you for not wanting to back to that group. I probably wouldn't, in fact I'm pretty darn sure I wouldn't. Bunch of mutton heads can't put forth any more effort than that don't deserve to attention. Pity indeed about the kids though, but that's well beyond your control so forget about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 I can kind of relate - quite often what I have said has been taken out of context - really peefs me off. Perhaps you could ask them to put in a diclaimer saying that the notes are innacurate? Is it a fact that you did not agree to a summary of what you said - perhaps they have overstepped the mark - although this does not surprise me (sigh). I have recently left an AS support group I was involved in - it was run by a non aspie whose husband is dx AS. The lady who runs it is very much into helping people - if you know your place - in otherwords - don't dare be assertive and not a victim :-) I stood up for myself and this person turned on me using stuff I had told her in confidence against me and of course accusing me of being heartless and having no feelings - I reckon that is her opinion of aspies then - glad I know different :-) Feel like I've added to rant now - Ooops. I hope you can recover from this - out of interest was this group run by non aspies? > I am so so upset. > > I went to a new local Asperger's support group - a fairly small group - and > gave a talk about myself to parents of children with AS and /or autism. My > idea was to talk about things that had happened to me so as to help them > understand what it is like to have AS. OK - sounds OK. I told them all about > my problems with face recognition and also about the big problem I have with > episodic memory and also about how a Belgian educationalist (Hilde de > Clercq) worked on this aspect with autistic children, because I really have > problems with recalling personal events. My memory otherwise is superb in > many respects and I have a very good semantic memory. I also spoke about > lots of other things. > > > > Anyway there was someone trying to write things down and he doesn't speak > English properly and never fully understood what I was saying. And then they > included his very very bad summary (so bad it is unbelievable) and sent it > out with the minutes of the meeting by email to lots of people with my real > name. So in it he says things like I don't have a social memory and I forget > people just after I meet them. Now while I do have problems, and I told them > so that they could help their kids, I don't think they had the right to do > this given the context. They could have discussed episodic memory and AS but > not say thing like I don't have a social memory. > > > > So I am really so so upset that I can hardly speak. Almost meltdown > situation. If I ever wanted a job and someone read what he wrote, I would > never be employed again. So I have asked them to get everyone to erase > their email (i.e., minutes) and send out a new set of minutes without any > summary of my talk. > > > > Am I just being over sensitive? I know that is what everyone (i.e., > not-Aspies) will say. I don't think I am ever going back to the group again. > They don't even know what a support group is. What they did is certainly not > supportive. Oh I think I will now call those who are not Aspies or > not-autistics NAs because NTs is out of fashion. The way I feel right now > that NA also means not-applicable (as people!!!) seems dead right but I will > change my mind tomorrow - its just a feeling. > > > > I know it is highly unlikely that anyone else will ever be able to access > the emails on their computers but it is not impossible is it? I am feeling > so paranoid now. That's my worst. It is just not worthwhile to try and help > these people when they don't care about others. It's the NTs (oh sorry I > means NAs) who are insensitive and crass and uncaring. But just how do such > people treat their own AS kids. I am sorry for those kids. > > > > But I know how NA people function. They just have to gossip and scandal. I > can just imagine some of them running around saying things like - hey did > you know so-and-so doesn't even have a social memory and he forgets people > even minutes after he meets them. And then before you know it - because I am > well known - everybody is saying it and pointing fingers. > > > > Sorry I am not myself now. Suppose this is venting and ranting. > > Rory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 I think you have every right to be upset. I'd be too if someone butchered my words and rewrote them into something else. Accuracy is VERY important to Aspies. And if you have a public image to worry about, then all the worse. IF it turns out to have professional repercussions for you, I think you should sue them for misrepresentation of your words. But is the risk of that really very big? Aren't they more likely to just go on with their respective lives and forget all about it? Is there no way you could re-write the minutes yourself so that they come out as you intended them? Or are you too upset to want anything more to do with them at all? Inger Am so upset I am so so upset. I went to a new local Asperger's support group - a fairly small group - and gave a talk about myself to parents of children with AS and /or autism. My idea was to talk about things that had happened to me so as to help them understand what it is like to have AS. OK - sounds OK. I told them all about my problems with face recognition and also about the big problem I have with episodic memory and also about how a Belgian educationalist (Hilde de Clercq) worked on this aspect with autistic children, because I really have problems with recalling personal events. My memory otherwise is superb in many respects and I have a very good semantic memory. I also spoke about lots of other things. Anyway there was someone trying to write things down and he doesn't speak English properly and never fully understood what I was saying. And then they included his very very bad summary (so bad it is unbelievable) and sent it out with the minutes of the meeting by email to lots of people with my real name. So in it he says things like I don't have a social memory and I forget people just after I meet them. Now while I do have problems, and I told them so that they could help their kids, I don't think they had the right to do this given the context. They could have discussed episodic memory and AS but not say thing like I don't have a social memory. So I am really so so upset that I can hardly speak. Almost meltdown situation. If I ever wanted a job and someone read what he wrote, I would never be employed again. So I have asked them to get everyone to erase their email (i.e., minutes) and send out a new set of minutes without any summary of my talk. Am I just being over sensitive? I know that is what everyone (i.e., not-Aspies) will say. I don't think I am ever going back to the group again. They don't even know what a support group is. What they did is certainly not supportive. Oh I think I will now call those who are not Aspies or not-autistics NAs because NTs is out of fashion. The way I feel right now that NA also means not-applicable (as people!!!) seems dead right but I will change my mind tomorrow - its just a feeling. I know it is highly unlikely that anyone else will ever be able to access the emails on their computers but it is not impossible is it? I am feeling so paranoid now. That's my worst. It is just not worthwhile to try and help these people when they don't care about others. It's the NTs (oh sorry I means NAs) who are insensitive and crass and uncaring. But just how do such people treat their own AS kids. I am sorry for those kids. But I know how NA people function. They just have to gossip and scandal. I can just imagine some of them running around saying things like - hey did you know so-and-so doesn't even have a social memory and he forgets people even minutes after he meets them. And then before you know it - because I am well known - everybody is saying it and pointing fingers. Sorry I am not myself now. Suppose this is venting and ranting. Rory FAM Secret Society is a community based on respect, friendship, support and acceptance. Everyone is valued. Don't forget, there are links to other FAM sites on the Links page in the folder marked " Other FAM Sites. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 , that's just awful! Sometimes these do-gooders do more harm than good with their superior attitude. I think Aspies are best equipped to support other Aspies, because we can often relate to each other's experiences the way non-Aspies cannot unless they are extraordinarily empathic. Inger Re: Am so upset I can kind of relate - quite often what I have said has been taken out of context - really peefs me off. Perhaps you could ask them to put in a diclaimer saying that the notes are innacurate? Is it a fact that you did not agree to a summary of what you said - perhaps they have overstepped the mark - although this does not surprise me (sigh). I have recently left an AS support group I was involved in - it was run by a non aspie whose husband is dx AS. The lady who runs it is very much into helping people - if you know your place - in otherwords - don't dare be assertive and not a victim :-) I stood up for myself and this person turned on me using stuff I had told her in confidence against me and of course accusing me of being heartless and having no feelings - I reckon that is her opinion of aspies then - glad I know different :-) Feel like I've added to rant now - Ooops. I hope you can recover from this - out of interest was this group run by non aspies? > I am so so upset. > > I went to a new local Asperger's support group - a fairly small group - and > gave a talk about myself to parents of children with AS and /or autism. My > idea was to talk about things that had happened to me so as to help them > understand what it is like to have AS. OK - sounds OK. I told them all about > my problems with face recognition and also about the big problem I have with > episodic memory and also about how a Belgian educationalist (Hilde de > Clercq) worked on this aspect with autistic children, because I really have > problems with recalling personal events. My memory otherwise is superb in > many respects and I have a very good semantic memory. I also spoke about > lots of other things. > > > > Anyway there was someone trying to write things down and he doesn't speak > English properly and never fully understood what I was saying. And then they > included his very very bad summary (so bad it is unbelievable) and sent it > out with the minutes of the meeting by email to lots of people with my real > name. So in it he says things like I don't have a social memory and I forget > people just after I meet them. Now while I do have problems, and I told them > so that they could help their kids, I don't think they had the right to do > this given the context. They could have discussed episodic memory and AS but > not say thing like I don't have a social memory. > > > > So I am really so so upset that I can hardly speak. Almost meltdown > situation. If I ever wanted a job and someone read what he wrote, I would > never be employed again. So I have asked them to get everyone to erase > their email (i.e., minutes) and send out a new set of minutes without any > summary of my talk. > > > > Am I just being over sensitive? I know that is what everyone (i.e., > not-Aspies) will say. I don't think I am ever going back to the group again. > They don't even know what a support group is. What they did is certainly not > supportive. Oh I think I will now call those who are not Aspies or > not-autistics NAs because NTs is out of fashion. The way I feel right now > that NA also means not-applicable (as people!!!) seems dead right but I will > change my mind tomorrow - its just a feeling. > > > > I know it is highly unlikely that anyone else will ever be able to access > the emails on their computers but it is not impossible is it? I am feeling > so paranoid now. That's my worst. It is just not worthwhile to try and help > these people when they don't care about others. It's the NTs (oh sorry I > means NAs) who are insensitive and crass and uncaring. But just how do such > people treat their own AS kids. I am sorry for those kids. > > > > But I know how NA people function. They just have to gossip and scandal. I > can just imagine some of them running around saying things like - hey did > you know so-and-so doesn't even have a social memory and he forgets people > even minutes after he meets them. And then before you know it - because I am > well known - everybody is saying it and pointing fingers. > > > > Sorry I am not myself now. Suppose this is venting and ranting. > > Rory FAM Secret Society is a community based on respect, friendship, support and acceptance. Everyone is valued. Don't forget, there are links to other FAM sites on the Links page in the folder marked " Other FAM Sites. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 On 6 Aug 2005 Rory wrote: > bad it is unbelievable) and sent it out with the minutes of the > meeting by email to lots of people with my real name. I didn't read the whole message (it's late) so I may have the context wrong. But it seems the point is that the group emailed discussion details which should have not been sent out with the names. If that's the case, then take the opportunity of reminding them that this is offensive because it publishes something which should have been kept to the meeting, and because perhaps the people involved would not want the private details published. -s Quote Link to comment Share on other sites More sharing options...
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