Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I’m glad you did that Sally. I was confused. I will definitely write my letter. So everybody else’s job is… can you write to your MP PLEASE (email is fine and they can all be found here http://www.upmystreet.com/commons/l/ ) saying that you don’t feel that NAS represents you and anything else you want to say and include anecdotes if possible. One question still, should individuals write everything they feel is amiss with autism – because there is so much – or should they focus on one thing? SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of Eva family Sent: 21 January 2008 22:03 To: Autism-Biomedical-Europe Subject: political stuff So, following 's advice: TA would write to the mem bers of the Parliamentary Cttee and remind them of their existence (TAs that is) Sara would locate her MP and write to him explaining her situation and saying that the NAS didn't represent her anyone else who felt inspired and had a personal anecdote/gripe would do the same to their local MP And Thinking over Benet's statement of the NAS scientific position I was struck by the genetic pre-disposition/environmental trigger stuff and I wondered if that was a result of the Indie letter because the phraseology is very reminiscent of that letter. I spoke to Mills the NAS scientific officer about a year ago and he seemed very frustrated to me and finding himself in the middle of NAS rows about the science. It might be that the Indie row strengthened the science hand inside the NAS. Maybe we should consider attempting to influence Research Autism again. We know that Benet Middleton is on the way out (he/she is retiring/resigning I'm not sure which) perhaps we could influence the choice of successor towards someone more " severe friendly " xx sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I would focus. Main point in first sentence if you can. Second point in second par. Try and use one sheet of paper or email equivalent ie short. " My child is autistic and no appropriate schooling is available. This will increase public costs because he will be less independent than he might be with proper education. I want................... " My child is autistic and the statementing process is a nightmare. ............ " I cannot get SLT for my autistic child. I have spent money and time getting it into his statement and now the lea says it can't provide it. Am I supposed to take legal action again? This is one law for the rich and one for the poor............ I would focus on statementing, education etc which are things MPs can do something about rather than the NHS and medical side which they would see as something out of their area ie a matter for expertise which they don't have Sally Sass and Rem wrote: > > I’m glad you did that Sally. I was confused. I will definitely write > my letter. > > So everybody else’s job is… can you write to your MP PLEASE (email is > fine and they can all be found here > http://www.upmystreet.com/commons/l/ > <http://www.upmystreet.com/commons/l/> ) saying that you don’t feel > that NAS represents you and anything else you want to say and include > anecdotes if possible. > > One question still, should individuals write everything they feel is > amiss with autism – because there is so much – or should they focus on > one thing? > > SARA > > * political stuff > > So, following 's advice: > > TA would write to the mem bers of the Parliamentary Cttee and remind > them of their existence (TAs that is) > Sara would locate her MP and write to him explaining her situation and > saying that the NAS didn't represent her > anyone else who felt inspired and had a personal anecdote/gripe would do > the same to their local MP > > And > > Thinking over Benet's statement of the NAS scientific position I was > struck by the genetic pre-disposition/environmental trigger stuff and I > wondered if that was a result of the Indie letter because the > phraseology is very reminiscent of that letter. I spoke to Mills > the NAS scientific officer about a year ago and he seemed very > frustrated to me and finding himself in the middle of NAS rows about the > science. It might be that the Indie row strengthened the science hand > inside the NAS. > > Maybe we should consider attempting to influence Research Autism again. > > We know that Benet Middleton is on the way out (he/she is > retiring/resigning I'm not sure which) perhaps we could influence the > choice of successor towards someone more " severe friendly " > > xx sally > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: 20/01/2008 14:15 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Saying that the NAS doesn't represent you (if it doesn't) can go in too. But the main point is something else really afterall why do you want the assistance of the NAS? Sara's letter to Benet is very good. It would n't make much sense to an MP I wouldn't have thought (they are not responsible for the NAS). Might do better going to members of the All Party Group because it does relate to what they do ..ie listen to the NAS too much and other voices too little. Sally Eva family wrote: > I would focus. Main point in first sentence if you can. Second point in > second par. Try and use one sheet of paper or email equivalent ie short. > > " My child is autistic and no appropriate schooling is available. This > will increase public costs because he will be less independent than he > might be with proper education. I want................... > > " My child is autistic and the statementing process is a nightmare. > ........... > > " I cannot get SLT for my autistic child. I have spent money and time > getting it into his statement and now the lea says it can't provide it. > Am I supposed to take legal action again? This is one law for the rich > and one for the poor............ > > I would focus on statementing, education etc which are things MPs can do > something about rather than the NHS and medical side which they would > see as something out of their area ie a matter for expertise which they > don't have > > Sally > > > > Sass and Rem wrote: > >> I’m glad you did that Sally. I was confused. I will definitely write >> my letter. >> >> So everybody else’s job is… can you write to your MP PLEASE (email is >> fine and they can all be found here >> http://www.upmystreet.com/commons/l/ >> <http://www.upmystreet.com/commons/l/> ) saying that you don’t feel >> that NAS represents you and anything else you want to say and include >> anecdotes if possible. >> >> One question still, should individuals write everything they feel is >> amiss with autism – because there is so much – or should they focus on >> one thing? >> >> SARA >> >> * political stuff >> >> So, following 's advice: >> >> TA would write to the mem bers of the Parliamentary Cttee and remind >> them of their existence (TAs that is) >> Sara would locate her MP and write to him explaining her situation and >> saying that the NAS didn't represent her >> anyone else who felt inspired and had a personal anecdote/gripe would do >> the same to their local MP >> >> And >> >> Thinking over Benet's statement of the NAS scientific position I was >> struck by the genetic pre-disposition/environmental trigger stuff and I >> wondered if that was a result of the Indie letter because the >> phraseology is very reminiscent of that letter. I spoke to Mills >> the NAS scientific officer about a year ago and he seemed very >> frustrated to me and finding himself in the middle of NAS rows about the >> science. It might be that the Indie row strengthened the science hand >> inside the NAS. >> >> Maybe we should consider attempting to influence Research Autism again. >> >> We know that Benet Middleton is on the way out (he/she is >> retiring/resigning I'm not sure which) perhaps we could influence the >> choice of successor towards someone more " severe friendly " >> >> xx sally >> >> >> ------------------------------------------------------------------------ >> >> No virus found in this incoming message. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: 20/01/2008 14:15 >> >> > > > DISCLAIMER > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Ok, in that case can I cut and paste this onto the ABA list as there will be people there too willing to do this? I really hope lots of people do this. It's much easier when you know others are doing it. it's much less of a drop in the ocean. SARA * political stuff > > So, following 's advice: > > TA would write to the mem bers of the Parliamentary Cttee and remind > them of their existence (TAs that is) > Sara would locate her MP and write to him explaining her situation and > saying that the NAS didn't represent her > anyone else who felt inspired and had a personal anecdote/gripe would do > the same to their local MP > > And > > Thinking over Benet's statement of the NAS scientific position I was > struck by the genetic pre-disposition/environmental trigger stuff and I > wondered if that was a result of the Indie letter because the > phraseology is very reminiscent of that letter. I spoke to Mills > the NAS scientific officer about a year ago and he seemed very > frustrated to me and finding himself in the middle of NAS rows about the > science. It might be that the Indie row strengthened the science hand > inside the NAS. > > Maybe we should consider attempting to influence Research Autism again. > > We know that Benet Middleton is on the way out (he/she is > retiring/resigning I'm not sure which) perhaps we could influence the > choice of successor towards someone more " severe friendly " > > xx sally > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: 20/01/2008 14:15 > DISCLAIMER No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Can for me. Try the next one that I wrote after thinking a bit more Sally Sass and Rem wrote: > > Ok, in that case can I cut and paste this onto the ABA list as there > will be people there too willing to do this? I really hope lots of > people do this. It's much easier when you know others are doing it. it's > much less of a drop in the ocean. > SARA > > * political stuff > > > > So, following 's advice: > > > > TA would write to the mem bers of the Parliamentary Cttee and remind > > them of their existence (TAs that is) > > Sara would locate her MP and write to him explaining her situation and > > saying that the NAS didn't represent her > > anyone else who felt inspired and had a personal anecdote/gripe would > do > > the same to their local MP > > > > And > > > > Thinking over Benet's statement of the NAS scientific position I was > > struck by the genetic pre-disposition/environmental trigger stuff and > I > > wondered if that was a result of the Indie letter because the > > phraseology is very reminiscent of that letter. I spoke to > Mills > > the NAS scientific officer about a year ago and he seemed very > > frustrated to me and finding himself in the middle of NAS rows about > the > > science. It might be that the Indie row strengthened the science hand > > inside the NAS. > > > > Maybe we should consider attempting to influence Research Autism > again. > > > > We know that Benet Middleton is on the way out (he/she is > > retiring/resigning I'm not sure which) perhaps we could influence the > > choice of successor towards someone more " severe friendly " > > > > xx sally > > > > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: > 20/01/2008 14:15 > > > > DISCLAIMER > No information contained in this post is to be construed as medical > advice. If you need medical advice, please seek it from a suitably > qualified practitioner. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Sally or or anyone, My Dad and sister are both keen letter-writer and would both happily write to their MPs but live in a different constituency to me. What, if anything, could they be writing to their MP about? There are probably other friends/ family members of people on this list that would help out like that too if we could think of a task for them. SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of Eva family Sent: 22 January 2008 08:32 To: Autism-Biomedical-Europe Subject: Re: political stuff Can for me. Try the next one that I wrote after thinking a bit more Sally Sass and Rem wrote: > > Ok, in that case can I cut and paste this onto the ABA list as there > will be people there too willing to do this? I really hope lots of > people do this. It's much easier when you know others are doing it. it's > much less of a drop in the ocean. > SARA > > * political stuff > > > > So, following 's advice: > > > > TA would write to the mem bers of the Parliamentary Cttee and remind > > them of their existence (TAs that is) > > Sara would locate her MP and write to him explaining her situation and > > saying that the NAS didn't represent her > > anyone else who felt inspired and had a personal anecdote/gripe would > do > > the same to their local MP > > > > And > > > > Thinking over Benet's statement of the NAS scientific position I was > > struck by the genetic pre-disposition/environmental trigger stuff and > I > > wondered if that was a result of the Indie letter because the > > phraseology is very reminiscent of that letter. I spoke to > Mills > > the NAS scientific officer about a year ago and he seemed very > > frustrated to me and finding himself in the middle of NAS rows about > the > > science. It might be that the Indie row strengthened the science hand > > inside the NAS. > > > > Maybe we should consider attempting to influence Research Autism > again. > > > > We know that Benet Middleton is on the way out (he/she is > > retiring/resigning I'm not sure which) perhaps we could influence the > > choice of successor towards someone more " severe friendly " > > > > xx sally > > > > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG Free Edition. > > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: > 20/01/2008 14:15 > > > > DISCLAIMER > No information contained in this post is to be construed as medical > advice. If you need medical advice, please seek it from a suitably > qualified practitioner. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Hi The new CEO of NAS is Mark Lever who takes over the appointment on January 29th. We know that Benet Middleton is on the way out (he/she is retiring/resigning I'm not sure which) perhaps we could influence the choice of successor towards someone more " severe friendly " xx sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 You are right there is a lot wrong but I would focus on what is wrong locally doing a factual bullet point list. Again if you wish point out NAS not representative and has disproportionate influence but personalising the attack looks too much like infighting and is counterproductive. Don't spend massive amount of time, if MP is genuine he/she will investigate and at very least support Early Day Motion for 10 year strategy /taskforce and/or ensure broader consultation on other stuff happens. HTH > > I'm glad you did that Sally. I was confused. I will definitely write my > letter. > So everybody else's job is. can you write to your MP PLEASE (email is > fine and they can all be found here http://www.upmystreet.com/commons/l/ > ) saying that you don't feel that NAS represents you and anything else > you want to say and include anecdotes if possible. > One question still, should individuals write everything they feel is > amiss with autism - because there is so much - or should they focus on > one thing? > SARA > > political stuff > > So, following 's advice: > > TA would write to the mem bers of the Parliamentary Cttee and remind > them of their existence (TAs that is) > Sara would locate her MP and write to him explaining her situation and > saying that the NAS didn't represent her > anyone else who felt inspired and had a personal anecdote/gripe would do > > the same to their local MP > > And > > Thinking over Benet's statement of the NAS scientific position I was > struck by the genetic pre-disposition/environmental trigger stuff and I > wondered if that was a result of the Indie letter because the > phraseology is very reminiscent of that letter. I spoke to Mills > > the NAS scientific officer about a year ago and he seemed very > frustrated to me and finding himself in the middle of NAS rows about the > > science. It might be that the Indie row strengthened the science hand > inside the NAS. > > Maybe we should consider attempting to influence Research Autism again. > > We know that Benet Middleton is on the way out (he/she is > retiring/resigning I'm not sure which) perhaps we could influence the > choice of successor towards someone more " severe friendly " > > xx sally > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Strictly speaking any MP cAN only represent their own constituents but a letter saying how difficult life can be for families, 1 in 100 affected etc and urging MP to closely follow all the developments would be OK. > > > > > > I'm glad you did that Sally. I was confused. I will definitely write > > > my letter. > > > > > > So everybody else's job is. can you write to your MP PLEASE (email > is > > > fine and they can all be found here > > > http://www.upmystre <http://www.upmystreet.com/commons/l/> > et.com/commons/l/ > > <http://www.upmystre <http://www.upmystreet.com/commons/l/> > et.com/commons/l/> > > > <http://www.upmystre <http://www.upmystreet.com/commons/l/> > et.com/commons/l/ > > <http://www.upmystre <http://www.upmystreet.com/commons/l/> > et.com/commons/l/>> ) saying that you don't feel > > > that NAS represents you and anything else you want to say and > include > > > anecdotes if possible. > > > > > > One question still, should individuals write everything they feel is > > > amiss with autism - because there is so much - or should they focus > on > > > > > one thing? > > > > > > SARA > > > > > > * political stuff > > > > > > So, following 's advice: > > > > > > TA would write to the mem bers of the Parliamentary Cttee and remind > > > them of their existence (TAs that is) > > > Sara would locate her MP and write to him explaining her situation > and > > > saying that the NAS didn't represent her > > > anyone else who felt inspired and had a personal anecdote/gripe > would > > do > > > the same to their local MP > > > > > > And > > > > > > Thinking over Benet's statement of the NAS scientific position I was > > > struck by the genetic pre-disposition/environmental trigger stuff > and > > I > > > wondered if that was a result of the Indie letter because the > > > phraseology is very reminiscent of that letter. I spoke to > > Mills > > > the NAS scientific officer about a year ago and he seemed very > > > frustrated to me and finding himself in the middle of NAS rows about > > the > > > science. It might be that the Indie row strengthened the science > hand > > > inside the NAS. > > > > > > Maybe we should consider attempting to influence Research Autism > > again. > > > > > > We know that Benet Middleton is on the way out (he/she is > > > retiring/resigning I'm not sure which) perhaps we could influence > the > > > choice of successor towards someone more " severe friendly " > > > > > > xx sally > > > > > > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > > Checked by AVG Free Edition. > > > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: > > 20/01/2008 14:15 > > > > > > > DISCLAIMER > > No information contained in this post is to be construed as medical > > advice. If you need medical advice, please seek it from a suitably > > qualified practitioner. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 they can only say that they are not given much support and that the main national charity doesn't speak for people on their end of the spectrum, so they feel completely left out and their interests ar not represented by anyone, their voices not heard in the parliamentary discussions etc .... Natasa > > > > > > > > I'm glad you did that Sally. I was confused. I will definitely write > > > > my letter. > > > > > > > > So everybody else's job is. can you write to your MP PLEASE (email > > is > > > > fine and they can all be found here > > > > http://www.upmystre <http://www.upmystreet.com/commons/l/> > > et.com/commons/l/ > > > <http://www.upmystre <http://www.upmystreet.com/commons/l/> > > et.com/commons/l/> > > > > <http://www.upmystre <http://www.upmystreet.com/commons/l/> > > et.com/commons/l/ > > > <http://www.upmystre <http://www.upmystreet.com/commons/l/> > > et.com/commons/l/>> ) saying that you don't feel > > > > that NAS represents you and anything else you want to say and > > include > > > > anecdotes if possible. > > > > > > > > One question still, should individuals write everything they feel is > > > > amiss with autism - because there is so much - or should they focus > > on > > > > > > > one thing? > > > > > > > > SARA > > > > > > > > * political stuff > > > > > > > > So, following 's advice: > > > > > > > > TA would write to the mem bers of the Parliamentary Cttee and remind > > > > them of their existence (TAs that is) > > > > Sara would locate her MP and write to him explaining her situation > > and > > > > saying that the NAS didn't represent her > > > > anyone else who felt inspired and had a personal anecdote/gripe > > would > > > do > > > > the same to their local MP > > > > > > > > And > > > > > > > > Thinking over Benet's statement of the NAS scientific position I was > > > > struck by the genetic pre-disposition/environmental trigger stuff > > and > > > I > > > > wondered if that was a result of the Indie letter because the > > > > phraseology is very reminiscent of that letter. I spoke to > > > Mills > > > > the NAS scientific officer about a year ago and he seemed very > > > > frustrated to me and finding himself in the middle of NAS rows about > > > the > > > > science. It might be that the Indie row strengthened the science > > hand > > > > inside the NAS. > > > > > > > > Maybe we should consider attempting to influence Research Autism > > > again. > > > > > > > > We know that Benet Middleton is on the way out (he/she is > > > > retiring/resigning I'm not sure which) perhaps we could influence > > the > > > > choice of successor towards someone more " severe friendly " > > > > > > > > xx sally > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG Free Edition. > > > > Version: 7.5.516 / Virus Database: 269.19.7/1234 - Release Date: > > > 20/01/2008 14:15 > > > > > > > > > > DISCLAIMER > > > No information contained in this post is to be construed as medical > > > advice. If you need medical advice, please seek it from a suitably > > > qualified practitioner. > > > > > > Quote Link to comment Share on other sites More sharing options...
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