Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 he's not really , he's talking about a genetic pre-disposition and inter-action between genes and environment. Both of those suggest that intervention can work. >>But everytime something like that is in the Communication Mag, the ND's complain and they write a sort of retraction the next issue.........like they did with Lorene's piece last year Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Playing the gene card again....sigh.... National Asperger's SocietyDear Mr Middleton,On Thursday, January the 17th, I attended a NAS Help! sessionheld atthe Woolwell Centre in Plymouth. The session was run by twospeakers, and a Canadian lady named Jo, whose surname Ididn'tcatch. Both were excellent speakers and they had very manyuseful andinformative things to say. However, attending the session alsoraisedsome very serious concerns about the attitudes and aims of theNationalAutistic Society towards some of the adults and children itclaims torepresent.My son has a diagnosis of Autistic Spectrum disorder and I washopingfor support from the NAS from this session. I would like tostress thaton some generalised topics such as 'how statements work' thissupportwas as available to me as anyone, but when it came to discussingtheactual children on the spectrum, I'm afraid I felt that my childwasexcluded from your agenda. My son is at the lower end of thespectrum.At this session, and indeed, more generally, the NAS focuses itsattention at the other end of the spectrum. I will give you someexamples taken from the session.In describing people on the spectrum, the following observationsweremade:"they have a tendency to invade personal space duringconversation""they often monologue about special interests" "they have aunique senseof humour" "they don't understand sarcasm". My son waspreviouslynon-verbal, having lost his language at around 17 monthsfollowingnormal, slightly slow development and has since learnt torequest thingsverbally through his home education programme. None of the abovedescribe him or any other child at the lower end of thespectrum. Infact, they describe a totally different condition.At one point Mr. outlined reasons children might fail atschool.The reasons fell into two broad categories "sensory overload"and "notunderstanding subtleties of language/ body language". I wasshocked thatthere was simply no mention of developmental or language delay.The lady speaker made several comments that absolutely horrifiedme. Ido understand that these comments may be helpful to people withAsperger's Syndrome or High Functioning Autism because theywould helpto raise self-esteem and self-worth. However, I would like youto readthem with a child at the lower end of the spectrum in mind:"we're all on the spectrum""Autism is a gift""There are large groups of people around the world fed up withpeopletrying to cure them -they are proud of who they are and say"Stop makingme normal""People with autism have brought amazing things into our world.""If you walk into the Chemistry or Physics Dept. of your localuniversity, I bet you'll find lots of people on the spectrumworkingthere""Bill Gates has autism""Do you remember all those geeky kids you were at school with?Theyprobably all had autism."I find the above comments offensive because autism is a verydifficultcondition to live with. One of the huge challenges faced byparents likemyself is that it is a very poorly understood condition.Attitudes andcomments like those above are, in no way, helpful whendescribing myson's condition. This is extremely hard to overcome when it isbacked upby the National Autistic Society. Is it possible the NationalAutisticSociety itself does not understand autism at the lower end ofthespectrum?I heard the lady speaker (in whom the audience place a lot oftrust)also make two very dubious scientific statements. At one point amotherasked her why it was that more boys than girls had autism. Sherepliedthat it's because girls have better communication skills and soareoften overlooked. She said that there are a lot of girls outthere withautism that haven't been diagnosed. I am extremely interested infollowing this up. Are there any studies or is there anyliterature toback this up? It is not an explanation that I have heard before.I amalso interested to know if it is the official NAS explanation.Furthermore, if these girls do not have problems with theircommunication skills, then why would they be given a diagnosisofautism? This speaker also informed the audience that autism is ageneticdisorder and that scientists are very close to finding the genethatcauses autism. Is the NAS of the opinion that autism is entirelygenetic? Do you really believe that there is no environmentalcause? Doyou also believe that everyone on the spectrum has exactly thesamecondition with exactly the same cause? I am also interested inhercomment, above, on Bill Gates. Has Bill Gates been diagnosedwithautism? Please provide me with details of his diagnosis.Children or adults at the lower end of the spectrum do not havethevoice that those with Asperger's of HFA may have. Furthermore,theirparents are often struggling to cope and do not have the time tospeakon their behalf. They are also less able to attend meetings suchas thisone as it is harder to find babysitters or carers for childrenwith suchparticular needs. That the NAS chooses not to represent them Ifinddeplorable. I have entitled this email message 'the NationalAsperger'sSociety' and suggest that, if you changed your name, it wouldhelpparents like myself to find more appropriate help elsewhere.I would like to know your opinion on what I should do now. Doyou wantme to remain a member of NAS? If so, I would like to know whatit isthat you are offering me and my child. If you agree that youcaterbetter for people at the other end of the spectrum, then I wouldlike toknow whether you are prepared to change your name.Thank you,Sara Moroza--------------------------------------------------------------------------------------------This message is from The National Autistic Society (NAS). The NASrandomly monitors the content of e-mail messages sent and received.Any opinions contained in this message are those of the author and arenot given or endorsed by the NAS unless the author is clearly stated tohave authority to bind the charity, and this has been duly verified bye-mailing companysecretarynas (DOT) org.ukThe NAS is a company limited by guarantee (No. 1205298) registered inEngland and also a registered charity (No. 269425), its registeredoffice being 393 City Road, London, EC1V 1NG. www.nas.org.uk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 quick look says fine, sara. He needs to get his staff under control. It's a long, well thought out reply from such a senior person. What does everyone else think? Sally Sass and Rem wrote: > > Here's a part-answer from the NAS to my letter. SARA > > National Asperger's Society > > > > Dear Mr Middleton, > > On Thursday, January the 17th, I attended a NAS Help! session > held at > the Woolwell Centre in Plymouth. The session was run by two > speakers, > and a Canadian lady named Jo, whose surname I > didn't > catch. Both were excellent speakers and they had very many > useful and > informative things to say. However, attending the session also > raised > some very serious concerns about the attitudes and aims of the > National > Autistic Society towards some of the adults and children it > claims to > represent. > > My son has a diagnosis of Autistic Spectrum disorder and I was > hoping > for support from the NAS from this session. I would like to > stress that > on some generalised topics such as 'how statements work' this > support > was as available to me as anyone, but when it came to discussing > the > actual children on the spectrum, I'm afraid I felt that my child > was > excluded from your agenda. My son is at the lower end of the > spectrum. > At this session, and indeed, more generally, the NAS focuses its > attention at the other end of the spectrum. I will give you some > examples taken from the session. > > In describing people on the spectrum, the following observations > were > made: > " they have a tendency to invade personal space during > conversation " > " they often monologue about special interests " " they have a > unique sense > of humour " " they don't understand sarcasm " . My son was > previously > non-verbal, having lost his language at around 17 months > following > normal, slightly slow development and has since learnt to > request things > verbally through his home education programme. None of the above > describe him or any other child at the lower end of the > spectrum. In > fact, they describe a totally different condition. > > At one point Mr. outlined reasons children might fail at > school. > The reasons fell into two broad categories " sensory overload " > and " not > understanding subtleties of language/ body language " . I was > shocked that > there was simply no mention of developmental or language delay. > > The lady speaker made several comments that absolutely horrified > me. I > do understand that these comments may be helpful to people with > Asperger's Syndrome or High Functioning Autism because they > would help > to raise self-esteem and self-worth. However, I would like you > to read > them with a child at the lower end of the spectrum in mind: > " we're all on the spectrum " > " Autism is a gift " > " There are large groups of people around the world fed up with > people > trying to cure them -they are proud of who they are and say > " Stop making > me normal " > " People with autism have brought amazing things into our world. " > " If you walk into the Chemistry or Physics Dept. of your local > university, I bet you'll find lots of people on the spectrum > working > there " > " Bill Gates has autism " > " Do you remember all those geeky kids you were at school with? > They > probably all had autism. " > > I find the above comments offensive because autism is a very > difficult > condition to live with. One of the huge challenges faced by > parents like > myself is that it is a very poorly understood condition. > Attitudes and > comments like those above are, in no way, helpful when > describing my > son's condition. This is extremely hard to overcome when it is > backed up > by the National Autistic Society. Is it possible the National > Autistic > Society itself does not understand autism at the lower end of > the > spectrum? > > I heard the lady speaker (in whom the audience place a lot of > trust) > also make two very dubious scientific statements. At one point a > mother > asked her why it was that more boys than girls had autism. She > replied > that it's because girls have better communication skills and so > are > often overlooked. She said that there are a lot of girls out > there with > autism that haven't been diagnosed. I am extremely interested in > following this up. Are there any studies or is there any > literature to > back this up? It is not an explanation that I have heard before. > I am > also interested to know if it is the official NAS explanation. > Furthermore, if these girls do not have problems with their > communication skills, then why would they be given a diagnosis > of > autism? This speaker also informed the audience that autism is a > genetic > disorder and that scientists are very close to finding the gene > that > causes autism. Is the NAS of the opinion that autism is entirely > genetic? Do you really believe that there is no environmental > cause? Do > you also believe that everyone on the spectrum has exactly the > same > condition with exactly the same cause? I am also interested in > her > comment, above, on Bill Gates. Has Bill Gates been diagnosed > with > autism? Please provide me with details of his diagnosis. > > Children or adults at the lower end of the spectrum do not have > the > voice that those with Asperger's of HFA may have. Furthermore, > their > parents are often struggling to cope and do not have the time to > speak > on their behalf. They are also less able to attend meetings such > as this > one as it is harder to find babysitters or carers for children > with such > particular needs. That the NAS chooses not to represent them I > find > deplorable. I have entitled this email message 'the National > Asperger's > Society' and suggest that, if you changed your name, it would > help > parents like myself to find more appropriate help elsewhere. > > I would like to know your opinion on what I should do now. Do > you want > me to remain a member of NAS? If so, I would like to know what > it is > that you are offering me and my child. If you agree that you > cater > better for people at the other end of the spectrum, then I would > like to > know whether you are prepared to change your name. > > Thank you, > > Sara Moroza- > > > > > ---------------------------------------------------------- > --------------------------------- > This message is from The National Autistic Society (NAS). The NAS > randomly monitors the content of e-mail messages sent and received. > Any opinions contained in this message are those of the author and are > not given or endorsed by the NAS unless the author is clearly stated to > have authority to bind the charity, and this has been duly verified by > e-mailing companysecretary@... > <mailto:companysecretary%40nas.org.uk> > The NAS is a company limited by guarantee (No. 1205298) registered in > England and also a registered charity (No. 269425), its registered > office being 393 City Road, London, EC1V 1NG. www.nas.org.uk > > > ------------------------------------------------------------------------ > > 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 I just re-read your letter Sara, I think it is jolly good. xx sally Sass and Rem wrote: > > Here's a part-answer from the NAS to my letter. SARA > > National Asperger's Society > > > > Dear Mr Middleton, > > On Thursday, January the 17th, I attended a NAS Help! session > held at > the Woolwell Centre in Plymouth. The session was run by two > speakers, > and a Canadian lady named Jo, whose surname I > didn't > catch. Both were excellent speakers and they had very many > useful and > informative things to say. However, attending the session also > raised > some very serious concerns about the attitudes and aims of the > National > Autistic Society towards some of the adults and children it > claims to > represent. > > My son has a diagnosis of Autistic Spectrum disorder and I was > hoping > for support from the NAS from this session. I would like to > stress that > on some generalised topics such as 'how statements work' this > support > was as available to me as anyone, but when it came to discussing > the > actual children on the spectrum, I'm afraid I felt that my child > was > excluded from your agenda. My son is at the lower end of the > spectrum. > At this session, and indeed, more generally, the NAS focuses its > attention at the other end of the spectrum. I will give you some > examples taken from the session. > > In describing people on the spectrum, the following observations > were > made: > " they have a tendency to invade personal space during > conversation " > " they often monologue about special interests " " they have a > unique sense > of humour " " they don't understand sarcasm " . My son was > previously > non-verbal, having lost his language at around 17 months > following > normal, slightly slow development and has since learnt to > request things > verbally through his home education programme. None of the above > describe him or any other child at the lower end of the > spectrum. In > fact, they describe a totally different condition. > > At one point Mr. outlined reasons children might fail at > school. > The reasons fell into two broad categories " sensory overload " > and " not > understanding subtleties of language/ body language " . I was > shocked that > there was simply no mention of developmental or language delay. > > The lady speaker made several comments that absolutely horrified > me. I > do understand that these comments may be helpful to people with > Asperger's Syndrome or High Functioning Autism because they > would help > to raise self-esteem and self-worth. However, I would like you > to read > them with a child at the lower end of the spectrum in mind: > " we're all on the spectrum " > " Autism is a gift " > " There are large groups of people around the world fed up with > people > trying to cure them -they are proud of who they are and say > " Stop making > me normal " > " People with autism have brought amazing things into our world. " > " If you walk into the Chemistry or Physics Dept. of your local > university, I bet you'll find lots of people on the spectrum > working > there " > " Bill Gates has autism " > " Do you remember all those geeky kids you were at school with? > They > probably all had autism. " > > I find the above comments offensive because autism is a very > difficult > condition to live with. One of the huge challenges faced by > parents like > myself is that it is a very poorly understood condition. > Attitudes and > comments like those above are, in no way, helpful when > describing my > son's condition. This is extremely hard to overcome when it is > backed up > by the National Autistic Society. Is it possible the National > Autistic > Society itself does not understand autism at the lower end of > the > spectrum? > > I heard the lady speaker (in whom the audience place a lot of > trust) > also make two very dubious scientific statements. At one point a > mother > asked her why it was that more boys than girls had autism. She > replied > that it's because girls have better communication skills and so > are > often overlooked. She said that there are a lot of girls out > there with > autism that haven't been diagnosed. I am extremely interested in > following this up. Are there any studies or is there any > literature to > back this up? It is not an explanation that I have heard before. > I am > also interested to know if it is the official NAS explanation. > Furthermore, if these girls do not have problems with their > communication skills, then why would they be given a diagnosis > of > autism? This speaker also informed the audience that autism is a > genetic > disorder and that scientists are very close to finding the gene > that > causes autism. Is the NAS of the opinion that autism is entirely > genetic? Do you really believe that there is no environmental > cause? Do > you also believe that everyone on the spectrum has exactly the > same > condition with exactly the same cause? I am also interested in > her > comment, above, on Bill Gates. Has Bill Gates been diagnosed > with > autism? Please provide me with details of his diagnosis. > > Children or adults at the lower end of the spectrum do not have > the > voice that those with Asperger's of HFA may have. Furthermore, > their > parents are often struggling to cope and do not have the time to > speak > on their behalf. They are also less able to attend meetings such > as this > one as it is harder to find babysitters or carers for children > with such > particular needs. That the NAS chooses not to represent them I > find > deplorable. I have entitled this email message 'the National > Asperger's > Society' and suggest that, if you changed your name, it would > help > parents like myself to find more appropriate help elsewhere. > > I would like to know your opinion on what I should do now. Do > you want > me to remain a member of NAS? If so, I would like to know what > it is > that you are offering me and my child. If you agree that you > cater > better for people at the other end of the spectrum, then I would > like to > know whether you are prepared to change your name. > > Thank you, > > Sara Moroza- > > > > > ---------------------------------------------------------- > --------------------------------- > This message is from The National Autistic Society (NAS). The NAS > randomly monitors the content of e-mail messages sent and received. > Any opinions contained in this message are those of the author and are > not given or endorsed by the NAS unless the author is clearly stated to > have authority to bind the charity, and this has been duly verified by > e-mailing companysecretary@... > <mailto:companysecretary%40nas.org.uk> > The NAS is a company limited by guarantee (No. 1205298) registered in > England and also a registered charity (No. 269425), its registered > office being 393 City Road, London, EC1V 1NG. www.nas.org.uk > > > ------------------------------------------------------------------------ > > 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 he's not really , he's talking about a genetic pre-disposition and inter-action between genes and environment. Both of those suggest that intervention can work. Sally JULIE GRIFFITHS wrote: > > Playing the gene card again....sigh.... > > National Asperger's Society > > > > Dear Mr Middleton, > > On Thursday, January the 17th, I attended a NAS Help! session > held at > the Woolwell Centre in Plymouth. The session was run by two > speakers, > and a Canadian lady named Jo, whose surname I > didn't > catch. Both were excellent speakers and they had very many > useful and > informative things to say. However, attending the session also > raised > some very serious concerns about the attitudes and aims of the > National > Autistic Society towards some of the adults and children it > claims to > represent. > > My son has a diagnosis of Autistic Spectrum disorder and I was > hoping > for support from the NAS from this session. I would like to > stress that > on some generalised topics such as 'how statements work' this > support > was as available to me as anyone, but when it came to discussing > the > actual children on the spectrum, I'm afraid I felt that my child > was > excluded from your agenda. My son is at the lower end of the > spectrum. > At this session, and indeed, more generally, the NAS focuses its > attention at the other end of the spectrum. I will give you some > examples taken from the session. > > In describing people on the spectrum, the following observations > were > made: > " they have a tendency to invade personal space during > conversation " > " they often monologue about special interests " " they have a > unique sense > of humour " " they don't understand sarcasm " . My son was > previously > non-verbal, having lost his language at around 17 months > following > normal, slightly slow development and has since learnt to > request things > verbally through his home education programme. None of the above > describe him or any other child at the lower end of the > spectrum. In > fact, they describe a totally different condition. > > At one point Mr. outlined reasons children might fail at > school. > The reasons fell into two broad categories " sensory overload " > and " not > understanding subtleties of language/ body language " . I was > shocked that > there was simply no mention of developmental or language delay. > > The lady speaker made several comments that absolutely horrified > me. I > do understand that these comments may be helpful to people with > Asperger's Syndrome or High Functioning Autism because they > would help > to raise self-esteem and self-worth. However, I would like you > to read > them with a child at the lower end of the spectrum in mind: > " we're all on the spectrum " > " Autism is a gift " > " There are large groups of people around the world fed up with > people > trying to cure them -they are proud of who they are and say > " Stop making > me normal " > " People with autism have brought amazing things into our world. " > " If you walk into the Chemistry or Physics Dept. of your local > university, I bet you'll find lots of people on the spectrum > working > there " > " Bill Gates has autism " > " Do you remember all those geeky kids you were at school with? > They > probably all had autism. " > > I find the above comments offensive because autism is a very > difficult > condition to live with. One of the huge challenges faced by > parents like > myself is that it is a very poorly understood condition. > Attitudes and > comments like those above are, in no way, helpful when > describing my > son's condition. This is extremely hard to overcome when it is > backed up > by the National Autistic Society. Is it possible the National > Autistic > Society itself does not understand autism at the lower end of > the > spectrum? > > I heard the lady speaker (in whom the audience place a lot of > trust) > also make two very dubious scientific statements. At one point a > mother > asked her why it was that more boys than girls had autism. She > replied > that it's because girls have better communication skills and so > are > often overlooked. She said that there are a lot of girls out > there with > autism that haven't been diagnosed. I am extremely interested in > following this up. Are there any studies or is there any > literature to > back this up? It is not an explanation that I have heard before. > I am > also interested to know if it is the official NAS explanation. > Furthermore, if these girls do not have problems with their > communication skills, then why would they be given a diagnosis > of > autism? This speaker also informed the audience that autism is a > genetic > disorder and that scientists are very close to finding the gene > that > causes autism. Is the NAS of the opinion that autism is entirely > genetic? Do you really believe that there is no environmental > cause? Do > you also believe that everyone on the spectrum has exactly the > same > condition with exactly the same cause? I am also interested in > her > comment, above, on Bill Gates. Has Bill Gates been diagnosed > with > autism? Please provide me with details of his diagnosis. > > Children or adults at the lower end of the spectrum do not have > the > voice that those with Asperger's of HFA may have. Furthermore, > their > parents are often struggling to cope and do not have the time to > speak > on their behalf. They are also less able to attend meetings such > as this > one as it is harder to find babysitters or carers for children > with such > particular needs. That the NAS chooses not to represent them I > find > deplorable. I have entitled this email message 'the National > Asperger's > Society' and suggest that, if you changed your name, it would > help > parents like myself to find more appropriate help elsewhere. > > I would like to know your opinion on what I should do now. Do > you want > me to remain a member of NAS? If so, I would like to know what > it is > that you are offering me and my child. If you agree that you > cater > better for people at the other end of the spectrum, then I would > like to > know whether you are prepared to change your name. > > Thank you, > > Sara Moroza- > > > > > ---------------------------------------------------------- > --------------------------------- > This message is from The National Autistic Society (NAS). The NAS > randomly monitors the content of e-mail messages sent and received. > Any opinions contained in this message are those of the author and are > not given or endorsed by the NAS unless the author is clearly > stated to > have authority to bind the charity, and this has been duly verified by > e-mailing companysecretary@... > <mailto:companysecretary%40nas.org.uk> > The NAS is a company limited by guarantee (No. 1205298) registered in > England and also a registered charity (No. 269425), its registered > office being 393 City Road, London, EC1V 1NG. www.nas.org.uk > > > ------------------------------------------------------------------------ > > 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 Am I the only one that has no idea what it really means when people say that autism is caused by genetics? I think it's clear that almost every major disease has underlying genetic bases that make one slightly (or greatly) more or less likely to contract it. Of course, even if you are slightly (or greatly) more or less likely to get a disease, one still has all the **unknowns** of gene expression, lifestyle factors, environmental exposures and other influencing genes (of which there can be many) to factor in. In other words, genetic only means you have a increased chance of having something - in most cases, a very slightly increased chance, often times (dare I say usually) the increase is not significant. I studied molecular biology for many years (although this was a decade ago) and am well aware that the number of genetic " markers " that are found for various conditions does very little by way of explanation for anything other than slight changes in risk (excepting a very few cases, like breast cancer genes BRCA1 and BRCA2 where the absolute lifetime risk goes up quite dramatically) - why is there all this emphasis on categorising autism as genetic? (I'm not talking about in this group - I am talking about the world atlarge) It's starting to look to me that it is mostly being used for political reasons that involve questions concerning liability and personal identity, which I think is inappropriate and misleading. Can anyone tell me how this useful? (and I am not being flippant...:-) Cardiac diseases almost assuredly have a genetic component. Does that mean we eschew medicine for it? I find all this puzzling. -- In Autism-Biomedical-Europe , Eva family wrote: > > Identical twins are not always both autistic or not autistic to the same > degree. This means it cannot be wholly genetic. > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > bobsallyeva@... writes: > > he's not really , he's talking about a genetic pre-disposition and > inter-action between genes and environment. Both of those suggest that > intervention can work. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 , I think everyone here agrees with you but I think you have worded our thoughts very well. I think we might have to cut and paste bits of your email in future correspondence with the NAS or get you to write to them or your MP???? SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of zpapacarroll Sent: 21 January 2008 10:55 To: Autism-Biomedical-Europe Subject: Re: FW: National Asperger's Society Am I the only one that has no idea what it really means when people say that autism is caused by genetics? I think it's clear that almost every major disease has underlying genetic bases that make one slightly (or greatly) more or less likely to contract it. Of course, even if you are slightly (or greatly) more or less likely to get a disease, one still has all the **unknowns** of gene expression, lifestyle factors, environmental exposures and other influencing genes (of which there can be many) to factor in. In other words, genetic only means you have a increased chance of having something - in most cases, a very slightly increased chance, often times (dare I say usually) the increase is not significant. I studied molecular biology for many years (although this was a decade ago) and am well aware that the number of genetic " markers " that are found for various conditions does very little by way of explanation for anything other than slight changes in risk (excepting a very few cases, like breast cancer genes BRCA1 and BRCA2 where the absolute lifetime risk goes up quite dramatically) - why is there all this emphasis on categorising autism as genetic? (I'm not talking about in this group - I am talking about the world atlarge) It's starting to look to me that it is mostly being used for political reasons that involve questions concerning liability and personal identity, which I think is inappropriate and misleading. Can anyone tell me how this useful? (and I am not being flippant...:-) Cardiac diseases almost assuredly have a genetic component. Does that mean we eschew medicine for it? I find all this puzzling. -- In Autism-Biomedical-Europe , Eva family wrote: > > Identical twins are not always both autistic or not autistic to the same > degree. This means it cannot be wholly genetic. > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > bobsallyeva@... writes: > > he's not really , he's talking about a genetic pre-disposition and > inter-action between genes and environment. Both of those suggest that > intervention can work. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 , I’m the least scientifically able person on the planet. Is Down’s Syndrome a genetic disorder? SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of Sass and Rem Sent: 21 January 2008 11:07 To: Autism-Biomedical-Europe Subject: RE: Re: FW: National Asperger's Society , I think everyone here agrees with you but I think you have worded our thoughts very well. I think we might have to cut and paste bits of your email in future correspondence with the NAS or get you to write to them or your MP???? SARA Re: FW: National Asperger's Society Am I the only one that has no idea what it really means when people say that autism is caused by genetics? I think it's clear that almost every major disease has underlying genetic bases that make one slightly (or greatly) more or less likely to contract it. Of course, even if you are slightly (or greatly) more or less likely to get a disease, one still has all the **unknowns** of gene expression, lifestyle factors, environmental exposures and other influencing genes (of which there can be many) to factor in. In other words, genetic only means you have a increased chance of having something - in most cases, a very slightly increased chance, often times (dare I say usually) the increase is not significant. I studied molecular biology for many years (although this was a decade ago) and am well aware that the number of genetic " markers " that are found for various conditions does very little by way of explanation for anything other than slight changes in risk (excepting a very few cases, like breast cancer genes BRCA1 and BRCA2 where the absolute lifetime risk goes up quite dramatically) - why is there all this emphasis on categorising autism as genetic? (I'm not talking about in this group - I am talking about the world atlarge) It's starting to look to me that it is mostly being used for political reasons that involve questions concerning liability and personal identity, which I think is inappropriate and misleading. Can anyone tell me how this useful? (and I am not being flippant...:-) Cardiac diseases almost assuredly have a genetic component. Does that mean we eschew medicine for it? I find all this puzzling. -- In Autism-Biomedical-Europe , Eva family wrote: > > Identical twins are not always both autistic or not autistic to the same > degree. This means it cannot be wholly genetic. > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > bobsallyeva@... writes: > > he's not really , he's talking about a genetic pre-disposition and > inter-action between genes and environment. Both of those suggest that > intervention can work. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Genetic doesn't mean untreatable. I think its often used with the implication that it does. It doesn't. But the answer is surely not to deny that ASD has a genetic component but just to say " just because there it a genetic component doesn't mean that it can't be treated. Cystic Fibrosis is entirely genetic -- and treatable " Even if the thimerosal is the triggering factor there must be a genetic pre-disposition which some have and some don't otherwise autism wouldn't be an epidemic it would be 90% Sally zpapacarroll wrote: > > Am I the only one that has no idea what it really means when people > say that autism is caused by genetics? I think it's clear that almost > every major disease has underlying genetic bases that make one > slightly (or greatly) more or less likely to contract it. Of course, > even if you are slightly (or greatly) more or less likely to get a > disease, one still has all the **unknowns** of gene expression, > lifestyle factors, environmental exposures and other influencing genes > (of which there can be many) to factor in. In other words, genetic > only means you have a increased chance of having something - in most > cases, a very slightly increased chance, often times (dare I say > usually) the increase is not significant. > > I studied molecular biology for many years (although this was a decade > ago) and am well aware that the number of genetic " markers " that are > found for various conditions does very little by way of explanation > for anything other than slight changes in risk (excepting a very few > cases, like breast cancer genes BRCA1 and BRCA2 where the absolute > lifetime risk goes up quite dramatically) - why is there all this > emphasis on categorising autism as genetic? (I'm not talking about in > this group - I am talking about the world atlarge) > > It's starting to look to me that it is mostly being used for political > reasons that involve questions concerning liability and personal > identity, which I think is inappropriate and misleading. Can anyone > tell me how this useful? (and I am not being flippant...:-) Cardiac > diseases almost assuredly have a genetic component. Does that mean we > eschew medicine for it? I find all this puzzling. > > > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, Eva family > wrote: > > > > Identical twins are not always both autistic or not autistic to the > same > > degree. This means it cannot be wholly genetic. > > > > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > > bobsallyeva@... writes: > > > > he's not really , he's talking about a genetic pre-disposition > and > > inter-action between genes and environment. Both of those suggest that > > intervention can work. > > > > > ------------------------------------------------------------------------ > > 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 Yes Sally Sass and Rem wrote: > > , I’m the least scientifically able person on the planet. Is > Down’s Syndrome a genetic disorder? SARA > > * Re: FW: National Asperger's Society > > Am I the only one that has no idea what it really means when people > say that autism is caused by genetics? I think it's clear that almost > every major disease has underlying genetic bases that make one > slightly (or greatly) more or less likely to contract it. Of course, > even if you are slightly (or greatly) more or less likely to get a > disease, one still has all the **unknowns** of gene expression, > lifestyle factors, environmental exposures and other influencing genes > (of which there can be many) to factor in. In other words, genetic > only means you have a increased chance of having something - in most > cases, a very slightly increased chance, often times (dare I say > usually) the increase is not significant. > > I studied molecular biology for many years (although this was a decade > ago) and am well aware that the number of genetic " markers " that are > found for various conditions does very little by way of explanation > for anything other than slight changes in risk (excepting a very few > cases, like breast cancer genes BRCA1 and BRCA2 where the absolute > lifetime risk goes up quite dramatically) - why is there all this > emphasis on categorising autism as genetic? (I'm not talking about in > this group - I am talking about the world atlarge) > > It's starting to look to me that it is mostly being used for political > reasons that involve questions concerning liability and personal > identity, which I think is inappropriate and misleading. Can anyone > tell me how this useful? (and I am not being flippant...:-) Cardiac > diseases almost assuredly have a genetic component. Does that mean we > eschew medicine for it? I find all this puzzling. > > > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, Eva family > wrote: > > > > Identical twins are not always both autistic or not autistic to the > same > > degree. This means it cannot be wholly genetic. > > > > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > > bobsallyeva@... writes: > > > > he's not really , he's talking about a genetic pre-disposition > and > > inter-action between genes and environment. Both of those suggest that > > intervention can work. > > > > > ------------------------------------------------------------------------ > > 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 Yes, it's also very variable!! So it is hard wired -- you have the extra chromosome or you don't -- it may also be mild or very serious Sally Sass and Rem wrote: > > , I’m the least scientifically able person on the planet. Is > Down’s Syndrome a genetic disorder? SARA > > * Re: FW: National Asperger's Society > > Am I the only one that has no idea what it really means when people > say that autism is caused by genetics? I think it's clear that almost > every major disease has underlying genetic bases that make one > slightly (or greatly) more or less likely to contract it. Of course, > even if you are slightly (or greatly) more or less likely to get a > disease, one still has all the **unknowns** of gene expression, > lifestyle factors, environmental exposures and other influencing genes > (of which there can be many) to factor in. In other words, genetic > only means you have a increased chance of having something - in most > cases, a very slightly increased chance, often times (dare I say > usually) the increase is not significant. > > I studied molecular biology for many years (although this was a decade > ago) and am well aware that the number of genetic " markers " that are > found for various conditions does very little by way of explanation > for anything other than slight changes in risk (excepting a very few > cases, like breast cancer genes BRCA1 and BRCA2 where the absolute > lifetime risk goes up quite dramatically) - why is there all this > emphasis on categorising autism as genetic? (I'm not talking about in > this group - I am talking about the world atlarge) > > It's starting to look to me that it is mostly being used for political > reasons that involve questions concerning liability and personal > identity, which I think is inappropriate and misleading. Can anyone > tell me how this useful? (and I am not being flippant...:-) Cardiac > diseases almost assuredly have a genetic component. Does that mean we > eschew medicine for it? I find all this puzzling. > > > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, Eva family > wrote: > > > > Identical twins are not always both autistic or not autistic to the > same > > degree. This means it cannot be wholly genetic. > > > > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > > bobsallyeva@... writes: > > > > he's not really , he's talking about a genetic pre-disposition > and > > inter-action between genes and environment. Both of those suggest that > > intervention can work. > > > > > ------------------------------------------------------------------------ > > 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 Hi Sara, Yes it is, but in a slightly difference sense. It is not inherited as we usually think of " genetic " , but rather is a sort of dividing and copying mistake that happens with the DNA. Most cases have an extra copy of a chromosome, and usually this means every cell in the body has this extra genetic material around, which causes lots of problems. (there are cases where not all cells have the extra chromosome, or where there is a rearrangement of some of the genes, a couple different variants of Down's, and one of those rarer types is actually inherited - and those people don't have Down's but have a higher chance of having a child with Down's). I hope that wasn't too complicated, as I tried to keep it free of extraneous scientificky bits! But if you have the extra chromosome, you WILL have Down's (unlike a lot of the discussion of genetic markers etc. that happens around autism). > > > > > > In a message dated 21/01/2008 10:38:14 GMT Standard Time, > > bobsallyeva@ writes: > > > > he's not really , he's talking about a genetic pre-disposition > and > > inter-action between genes and environment. Both of those suggest that > > > intervention can work. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Benet is kind of their super duper press officer isn't he? I wonder whether you should write to their Chief Executive - Vernon Beachamp and cc it to Treating Autism. I don't think Benet's response answers your points in any meaningful sense, do you? Your experience does seem to underline the absolute heart of this matter, I'm sure Caroline or someone from TA would write in response to your copied letter. I.e. sharing those concerns. Steph xx > > Here's a part-answer from the NAS to my letter. SARA > > > National Asperger's Society > > > > > Dear Mr Middleton, > > On Thursday, January the 17th, I attended a NAS Help! session > held at > the Woolwell Centre in Plymouth. The session was run by two > speakers, > and a Canadian lady named Jo, whose surname I > didn't > catch. Both were excellent speakers and they had very many > useful and > informative things to say. However, attending the session also > raised > some very serious concerns about the attitudes and aims of the > National > Autistic Society towards some of the adults and children it > claims to > represent. > > My son has a diagnosis of Autistic Spectrum disorder and I was > hoping > for support from the NAS from this session. I would like to > stress that > on some generalised topics such as 'how statements work' this > support > was as available to me as anyone, but when it came to discussing > the > actual children on the spectrum, I'm afraid I felt that my child > was > excluded from your agenda. My son is at the lower end of the > spectrum. > At this session, and indeed, more generally, the NAS focuses its > attention at the other end of the spectrum. I will give you some > examples taken from the session. > > In describing people on the spectrum, the following observations > were > made: > " they have a tendency to invade personal space during > conversation " > " they often monologue about special interests " " they have a > unique sense > of humour " " they don't understand sarcasm " . My son was > previously > non-verbal, having lost his language at around 17 months > following > normal, slightly slow development and has since learnt to > request things > verbally through his home education programme. None of the above > describe him or any other child at the lower end of the > spectrum. In > fact, they describe a totally different condition. > > At one point Mr. outlined reasons children might fail at > school. > The reasons fell into two broad categories " sensory overload " > and " not > understanding subtleties of language/ body language " . I was > shocked that > there was simply no mention of developmental or language delay. > > The lady speaker made several comments that absolutely horrified > me. I > do understand that these comments may be helpful to people with > Asperger's Syndrome or High Functioning Autism because they > would help > to raise self-esteem and self-worth. However, I would like you > to read > them with a child at the lower end of the spectrum in mind: > " we're all on the spectrum " > " Autism is a gift " > " There are large groups of people around the world fed up with > people > trying to cure them -they are proud of who they are and say > " Stop making > me normal " > " People with autism have brought amazing things into our world. " > " If you walk into the Chemistry or Physics Dept. of your local > university, I bet you'll find lots of people on the spectrum > working > there " > " Bill Gates has autism " > " Do you remember all those geeky kids you were at school with? > They > probably all had autism. " > > I find the above comments offensive because autism is a very > difficult > condition to live with. One of the huge challenges faced by > parents like > myself is that it is a very poorly understood condition. > Attitudes and > comments like those above are, in no way, helpful when > describing my > son's condition. This is extremely hard to overcome when it is > backed up > by the National Autistic Society. Is it possible the National > Autistic > Society itself does not understand autism at the lower end of > the > spectrum? > > I heard the lady speaker (in whom the audience place a lot of > trust) > also make two very dubious scientific statements. At one point a > mother > asked her why it was that more boys than girls had autism. She > replied > that it's because girls have better communication skills and so > are > often overlooked. She said that there are a lot of girls out > there with > autism that haven't been diagnosed. I am extremely interested in > following this up. Are there any studies or is there any > literature to > back this up? It is not an explanation that I have heard before. > I am > also interested to know if it is the official NAS explanation. > Furthermore, if these girls do not have problems with their > communication skills, then why would they be given a diagnosis > of > autism? This speaker also informed the audience that autism is a > genetic > disorder and that scientists are very close to finding the gene > that > causes autism. Is the NAS of the opinion that autism is entirely > genetic? Do you really believe that there is no environmental > cause? Do > you also believe that everyone on the spectrum has exactly the > same > condition with exactly the same cause? I am also interested in > her > comment, above, on Bill Gates. Has Bill Gates been diagnosed > with > autism? Please provide me with details of his diagnosis. > > Children or adults at the lower end of the spectrum do not have > the > voice that those with Asperger's of HFA may have. Furthermore, > their > parents are often struggling to cope and do not have the time to > speak > on their behalf. They are also less able to attend meetings such > as this > one as it is harder to find babysitters or carers for children > with such > particular needs. That the NAS chooses not to represent them I > find > deplorable. I have entitled this email message 'the National > Asperger's > Society' and suggest that, if you changed your name, it would > help > parents like myself to find more appropriate help elsewhere. > > I would like to know your opinion on what I should do now. Do > you want > me to remain a member of NAS? If so, I would like to know what > it is > that you are offering me and my child. If you agree that you > cater > better for people at the other end of the spectrum, then I would > like to > know whether you are prepared to change your name. > > Thank you, > > Sara Moroza- > > > > > > ------------------------------------------------------------------- ----- > --------------------------------- > This message is from The National Autistic Society (NAS). The NAS > randomly monitors the content of e-mail messages sent and received. > Any opinions contained in this message are those of the author and are > not given or endorsed by the NAS unless the author is clearly stated to > have authority to bind the charity, and this has been duly verified by > e-mailing companysecretary@... > The NAS is a company limited by guarantee (No. 1205298) registered in > England and also a registered charity (No. 269425), its registered > office being 393 City Road, London, EC1V 1NG. www.nas.org.uk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 genes are probably behind everything, surely. everyone has a genetic predisposition to something - fatness, alcoholism, cancer (particularly breast cancer and leukemia), bunions, alzheimers, arthritis, kidney stones, malignant melanoma.... they're all things that can run in families but can also be treated/prevented/screened for/in some cases avoided through modifications in diet, medicine, exercise and so on. Not unlike autism! I dont' see " genes " as the cop out that they want to make it! I had two grandads - both smoked like chimneys. One died from lung cancer at 53, one died from old age at 94. two unhealthy men, one who lived 40 years longer. Because I think he was genetically better able to rid his body of the toxins from the cigarette smoke. (no-one in my family touched a green vegetable until 1978. Amazing that we have any family tree at all really) FWIW Steph x > > Playing the gene card again....sigh.... > National Asperger's Society > > > > Dear Mr Middleton, > > On Thursday, January the 17th, I attended a NAS Help! session > held at > the Woolwell Centre in Plymouth. The session was run by two > speakers, > and a Canadian lady named Jo, whose surname I > didn't > catch. Both were excellent speakers and they had very many > useful and > informative things to say. However, attending the session also > raised > some very serious concerns about the attitudes and aims of the > National > Autistic Society towards some of the adults and children it > claims to > represent. > > My son has a diagnosis of Autistic Spectrum disorder and I was > hoping > for support from the NAS from this session. I would like to > stress that > on some generalised topics such as 'how statements work' this > support > was as available to me as anyone, but when it came to discussing > the > actual children on the spectrum, I'm afraid I felt that my child > was > excluded from your agenda. My son is at the lower end of the > spectrum. > At this session, and indeed, more generally, the NAS focuses its > attention at the other end of the spectrum. I will give you some > examples taken from the session. > > In describing people on the spectrum, the following observations > were > made: > " they have a tendency to invade personal space during > conversation " > " they often monologue about special interests " " they have a > unique sense > of humour " " they don't understand sarcasm " . My son was > previously > non-verbal, having lost his language at around 17 months > following > normal, slightly slow development and has since learnt to > request things > verbally through his home education programme. None of the above > describe him or any other child at the lower end of the > spectrum. In > fact, they describe a totally different condition. > > At one point Mr. outlined reasons children might fail at > school. > The reasons fell into two broad categories " sensory overload " > and " not > understanding subtleties of language/ body language " . I was > shocked that > there was simply no mention of developmental or language delay. > > The lady speaker made several comments that absolutely horrified > me. I > do understand that these comments may be helpful to people with > Asperger's Syndrome or High Functioning Autism because they > would help > to raise self-esteem and self-worth. However, I would like you > to read > them with a child at the lower end of the spectrum in mind: > " we're all on the spectrum " > " Autism is a gift " > " There are large groups of people around the world fed up with > people > trying to cure them -they are proud of who they are and say > " Stop making > me normal " > " People with autism have brought amazing things into our world. " > " If you walk into the Chemistry or Physics Dept. of your local > university, I bet you'll find lots of people on the spectrum > working > there " > " Bill Gates has autism " > " Do you remember all those geeky kids you were at school with? > They > probably all had autism. " > > I find the above comments offensive because autism is a very > difficult > condition to live with. One of the huge challenges faced by > parents like > myself is that it is a very poorly understood condition. > Attitudes and > comments like those above are, in no way, helpful when > describing my > son's condition. This is extremely hard to overcome when it is > backed up > by the National Autistic Society. Is it possible the National > Autistic > Society itself does not understand autism at the lower end of > the > spectrum? > > I heard the lady speaker (in whom the audience place a lot of > trust) > also make two very dubious scientific statements. At one point a > mother > asked her why it was that more boys than girls had autism. She > replied > that it's because girls have better communication skills and so > are > often overlooked. She said that there are a lot of girls out > there with > autism that haven't been diagnosed. I am extremely interested in > following this up. Are there any studies or is there any > literature to > back this up? It is not an explanation that I have heard before. > I am > also interested to know if it is the official NAS explanation. > Furthermore, if these girls do not have problems with their > communication skills, then why would they be given a diagnosis > of > autism? This speaker also informed the audience that autism is a > genetic > disorder and that scientists are very close to finding the gene > that > causes autism. Is the NAS of the opinion that autism is entirely > genetic? Do you really believe that there is no environmental > cause? Do > you also believe that everyone on the spectrum has exactly the > same > condition with exactly the same cause? I am also interested in > her > comment, above, on Bill Gates. Has Bill Gates been diagnosed > with > autism? Please provide me with details of his diagnosis. > > Children or adults at the lower end of the spectrum do not have > the > voice that those with Asperger's of HFA may have. Furthermore, > their > parents are often struggling to cope and do not have the time to > speak > on their behalf. They are also less able to attend meetings such > as this > one as it is harder to find babysitters or carers for children > with such > particular needs. That the NAS chooses not to represent them I > find > deplorable. I have entitled this email message 'the National > Asperger's > Society' and suggest that, if you changed your name, it would > help > parents like myself to find more appropriate help elsewhere. > > I would like to know your opinion on what I should do now. Do > you want > me to remain a member of NAS? If so, I would like to know what > it is > that you are offering me and my child. If you agree that you > cater > better for people at the other end of the spectrum, then I would > like to > know whether you are prepared to change your name. > > Thank you, > > Sara Moroza- > > > > > ---------------------------------------------------------- > --------------------------------- > This message is from The National Autistic Society (NAS). The NAS > randomly monitors the content of e-mail messages sent and received. > Any opinions contained in this message are those of the author and are > not given or endorsed by the NAS unless the author is clearly stated to > have authority to bind the charity, and this has been duly verified by > e-mailing companysecretary@... > The NAS is a company limited by guarantee (No. 1205298) registered in > England and also a registered charity (No. 269425), its registered > office being 393 City Road, London, EC1V 1NG. www.nas.org.uk > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 A really good idea. Treating Autism could support you and put your letter forward as an example in its discussions with the NAS Sally stephaniesirr wrote: > > Benet is kind of their super duper press officer isn't he? I wonder > whether you should write to their Chief Executive - Vernon Beachamp > and cc it to Treating Autism. I don't think Benet's response > answers your points in any meaningful sense, do you? Your experience > does seem to underline the absolute heart of this matter, I'm sure > Caroline or someone from TA would write in response to your copied > letter. I.e. sharing those concerns. > > Steph xx > > > > > > Here's a part-answer from the NAS to my letter. SARA > > > > > > National Asperger's Society > > > > > > > > > > Dear Mr Middleton, > > > > On Thursday, January the 17th, I attended a NAS Help! session > > held at > > the Woolwell Centre in Plymouth. The session was run by two > > speakers, > > and a Canadian lady named Jo, whose surname I > > didn't > > catch. Both were excellent speakers and they had very many > > useful and > > informative things to say. However, attending the session > also > > raised > > some very serious concerns about the attitudes and aims of > the > > National > > Autistic Society towards some of the adults and children it > > claims to > > represent. > > > > My son has a diagnosis of Autistic Spectrum disorder and I > was > > hoping > > for support from the NAS from this session. I would like to > > stress that > > on some generalised topics such as 'how statements work' this > > support > > was as available to me as anyone, but when it came to > discussing > > the > > actual children on the spectrum, I'm afraid I felt that my > child > > was > > excluded from your agenda. My son is at the lower end of the > > spectrum. > > At this session, and indeed, more generally, the NAS focuses > its > > attention at the other end of the spectrum. I will give you > some > > examples taken from the session. > > > > In describing people on the spectrum, the following > observations > > were > > made: > > " they have a tendency to invade personal space during > > conversation " > > " they often monologue about special interests " " they have a > > unique sense > > of humour " " they don't understand sarcasm " . My son was > > previously > > non-verbal, having lost his language at around 17 months > > following > > normal, slightly slow development and has since learnt to > > request things > > verbally through his home education programme. None of the > above > > describe him or any other child at the lower end of the > > spectrum. In > > fact, they describe a totally different condition. > > > > At one point Mr. outlined reasons children might fail > at > > school. > > The reasons fell into two broad categories " sensory overload " > > and " not > > understanding subtleties of language/ body language " . I was > > shocked that > > there was simply no mention of developmental or language > delay. > > > > The lady speaker made several comments that absolutely > horrified > > me. I > > do understand that these comments may be helpful to people > with > > Asperger's Syndrome or High Functioning Autism because they > > would help > > to raise self-esteem and self-worth. However, I would like > you > > to read > > them with a child at the lower end of the spectrum in mind: > > " we're all on the spectrum " > > " Autism is a gift " > > " There are large groups of people around the world fed up > with > > people > > trying to cure them -they are proud of who they are and say > > " Stop making > > me normal " > > " People with autism have brought amazing things into our > world. " > > " If you walk into the Chemistry or Physics Dept. of your > local > > university, I bet you'll find lots of people on the spectrum > > working > > there " > > " Bill Gates has autism " > > " Do you remember all those geeky kids you were at school > with? > > They > > probably all had autism. " > > > > I find the above comments offensive because autism is a very > > difficult > > condition to live with. One of the huge challenges faced by > > parents like > > myself is that it is a very poorly understood condition. > > Attitudes and > > comments like those above are, in no way, helpful when > > describing my > > son's condition. This is extremely hard to overcome when it > is > > backed up > > by the National Autistic Society. Is it possible the National > > Autistic > > Society itself does not understand autism at the lower end of > > the > > spectrum? > > > > I heard the lady speaker (in whom the audience place a lot of > > trust) > > also make two very dubious scientific statements. At one > point a > > mother > > asked her why it was that more boys than girls had autism. > She > > replied > > that it's because girls have better communication skills and > so > > are > > often overlooked. She said that there are a lot of girls out > > there with > > autism that haven't been diagnosed. I am extremely > interested in > > following this up. Are there any studies or is there any > > literature to > > back this up? It is not an explanation that I have heard > before. > > I am > > also interested to know if it is the official NAS > explanation. > > Furthermore, if these girls do not have problems with their > > communication skills, then why would they be given a > diagnosis > > of > > autism? This speaker also informed the audience that autism > is a > > genetic > > disorder and that scientists are very close to finding the > gene > > that > > causes autism. Is the NAS of the opinion that autism is > entirely > > genetic? Do you really believe that there is no environmental > > cause? Do > > you also believe that everyone on the spectrum has exactly > the > > same > > condition with exactly the same cause? I am also interested > in > > her > > comment, above, on Bill Gates. Has Bill Gates been diagnosed > > with > > autism? Please provide me with details of his diagnosis. > > > > Children or adults at the lower end of the spectrum do not > have > > the > > voice that those with Asperger's of HFA may have. > Furthermore, > > their > > parents are often struggling to cope and do not have the > time to > > speak > > on their behalf. They are also less able to attend meetings > such > > as this > > one as it is harder to find babysitters or carers for > children > > with such > > particular needs. That the NAS chooses not to represent them > I > > find > > deplorable. I have entitled this email message 'the National > > Asperger's > > Society' and suggest that, if you changed your name, it would > > help > > parents like myself to find more appropriate help elsewhere. > > > > I would like to know your opinion on what I should do now. Do > > you want > > me to remain a member of NAS? If so, I would like to know > what > > it is > > that you are offering me and my child. If you agree that you > > cater > > better for people at the other end of the spectrum, then I > would > > like to > > know whether you are prepared to change your name. > > > > Thank you, > > > > Sara Moroza- > > > > > > > > > > > > ---------------------------------------------------------- > ----- > > --------------------------------- > > This message is from The National Autistic Society (NAS). The NAS > > randomly monitors the content of e-mail messages sent and received. > > Any opinions contained in this message are those of the author and > are > > not given or endorsed by the NAS unless the author is clearly > stated to > > have authority to bind the charity, and this has been duly > verified by > > e-mailing companysecretary@... > > The NAS is a company limited by guarantee (No. 1205298) registered > in > > England and also a registered charity (No. 269425), its registered > > office being 393 City Road, London, EC1V 1NG. www.nas.org.uk > > > > > ------------------------------------------------------------------------ > > 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...
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