bid Report post Posted March 25, 2011 (edited) OK, since my family has inadvertently been drawn into this let me clarify... My dad: an 'eccentric academic' all his life. At the end of his life, his mental health team identified he had 'mild' autism. We had always known he was different, and once my son had been diagnosed and we all started to read around the subject, both my dad and the rest of us believed he had HFA/AS. Me: formal NHS dx of AS when I was 41, after it was suggested by my younger son's paed. (see below) that I might benefit from an assessment. My eldest DS: formal NHS dx of AS when he was 6 in 1996. (Different dad to the next 3) My eldest DD: we probably could get her a dx of AS if we went for it, but she is very happy with who she is...and we have learnt to ride the bumps! She does have sensory integration disorder, for which she has received help. My youngest DD: it would be hard to find a more resolutely NT girlie! My youngest DS: put through the full CDC assessment (took about 18 months in all) after we had concerns when he was a toddley person. We sat in on the final clinic meeting, and we were entirely happy with the team's findings that he wasn't on the autistic spectrum. He remains a resolutely NT chap. So, any genetic link must come from me/my family...I could also describe other immediate family members on my side, two of whom had the issue of 'traits' raised by schools. Bid Edited March 25, 2011 by bid Quote Share this post Link to post Share on other sites
baddad Report post Posted March 25, 2011 (edited) Sorry, I thought my PM made clear, I'm a co-founder of Jelibean. Basically me and Debi Evans (with several other trustees). Ah. No, I didn't make the connection, sorry! I had no idea what the PM was about, and when I asked one of the mods who might have remembered they pointed me to a very old post (Nov 2008) I had completely forgotten, and couldn't be gfagged to read again (I don't mean that dismissively, I just thought your PM was a 'one off' apology from someone who had joined specifically to make that apology). Sorry I didn't join the dots up properly. Now i have, I'll just quickly say (cos I haven't got time to check out the link now) that if i disagreed with the 'Jelibean' concept then i probably still do. certainly i don't like the term, and i don't like the suggestion, if you are suggesting what I think you're suggesting, of an even broader 'labelling' system to include people who don't currently meet the diagnostic criteria and have no need of support. If I get time I'll have a proper look at 'Jelibean' at some time so i can offer a more considered feedback. L&P BD Edited March 25, 2011 by baddad Quote Share this post Link to post Share on other sites
GaryS Report post Posted March 25, 2011 (edited) All I can say is I will not be encouraging Ben to describe himself as a ''Jellybean'' [he would feel very patronised] or using the site myself on a regular basis.Everything appears to be written by one person and there is a marked lack of encouragemnt to use some of the excellent resources offered by recognised organisations such as the NAS which worries me. I'm sorry you feel that way and yes, you are right - it is written mainly by one person; Debi Evans, who works 16+hrs per day 6 or 7 days a week preparing depositions, creating profiles, completing DLA/EMA forms, supporting parents and helping children. She opens her home daily for distraught parents who stay for hours and also helps with children in their schools. We are known to have telephone support for parents and individuals in crises, often taking calls in the middle of the night; many needing to be transferred to immediate care facilities. We both spend hours and hours poring over the deluge of documentation exuding from government and regional NHS boards in an attempt to promote better professional understanding of the spectrum, how they are perceived and how they perceive them. We do all this for no payment whatsoever, nothing, nada, not even receiving a donation for the free refreshments at the meetings we organise. So I'm really sorry that you feel your son would be patronised, many children and indeed adults like the TIP and they, like many professionals enjoy the website for what it is. Additionally, please do not presume to comment on what encouragement we offer the NAS without more understanding. Other than the link on the main page it is the policy of the NAS not to allow organisations to link directly as they feel it may infer they are endorsing or even financing those organisations. Debi works continually with the NAS from local and regional level to the Chief Executive and sits together with a representative of the NAS on the National Adult Autism Strategy Board, Regional Autism Board and Local Autism board who are now adopting the strategic diagnosis and provision model we have designed over the last few months - so many thanks, but there is no real need for your worry. Edited March 25, 2011 by GaryS Quote Share this post Link to post Share on other sites
GaryS Report post Posted March 25, 2011 OK, since my family has inadvertently been drawn into this let me clarify... Sorry bid, I hope you don't feel I was prompting for that, just trying to be funny, thanks for it anyway. Quote Share this post Link to post Share on other sites
GaryS Report post Posted March 25, 2011 (edited) Ah. No, I didn't make the connection, sorry! I had no idea what the PM was about, and when I asked one of the mods who might have remembered they pointed me to a very old post (Nov 2008) I had completely forgotten, and couldn't be gfagged to read again (I don't mean that dismissively, I just thought your PM was a 'one off' apology from someone who had joined specifically to make that apology). Sorry I didn't join the dots up properly. Now i have, I'll just quickly say (cos I haven't got time to check out the link now) that if i disagreed with the 'Jelibean' concept then i probably still do. certainly i don't like the term, and i don't like the suggestion, if you are suggesting what I think you're suggesting, of an even broader 'labelling' system to include people who don't currently meet the diagnostic criteria and have no need of support. If I get time I'll have a proper look at 'Jelibean' at some time so i can offer a more considered feedback. L&P BD No worries - feedback would be useful if you can spare the time. I think the disagreement was a little more than conceptual. But I think you've surmised the general idea and at some point would like to understand why. Edited March 25, 2011 by GaryS Quote Share this post Link to post Share on other sites
Karen A Report post Posted March 26, 2011 (edited) I'm sorry you feel that way and yes, you are right - it is written mainly by one person; Debi Evans, who works 16+hrs per day 6 or 7 days a week preparing depositions, creating profiles, completing DLA/EMA forms, supporting parents and helping children. She opens her home daily for distraught parents who stay for hours and also helps with children in their schools. We are known to have telephone support for parents and individuals in crises, often taking calls in the middle of the night; many needing to be transferred to immediate care facilities. We both spend hours and hours poring over the deluge of documentation exuding from government and regional NHS boards in an attempt to promote better professional understanding of the spectrum, how they are perceived and how they perceive them. We do all this for no payment whatsoever, nothing, nada, not even receiving a donation for the free refreshments at the meetings we organise. So I'm really sorry that you feel your son would be patronised, many children and indeed adults like the TIP and they, like many professionals enjoy the website for what it is. Additionally, please do not presume to comment on what encouragement we offer the NAS without more understanding. Other than the link on the main page it is the policy of the NAS not to allow organisations to link directly as they feel it may infer they are endorsing or even financing those organisations. Debi works continually with the NAS from local and regional level to the Chief Executive and sits together with a representative of the NAS on the National Adult Autism Strategy Board, Regional Autism Board and Local Autism board who are now adopting the strategic diagnosis and provision model we have designed over the last few months - so many thanks, but there is no real need for your worry. Sorry I did not intend to presume to comment on what encouragement you offer the NAS and did not explain myself well. I commented on what I observed on the web site.I looked at length at the website and saw lots of information offered by one person.I tend myself when offering advice to refer people to the NAS because I believe their information is excellent .If I myself am looking for information I always check the credentials of the person offering advice because that is how I was trained.But it is a personal opinion and it is for anyone to decide for themselves I guess. I do not intend to get into any more debate.You may not be aware but I have taken a break from the Forum.Having clocked up 5000 posts doing similar work to Debbie and having been involoved in other stuff elsewhere I am working hard to gain some balance in my life.I am being very careful to prioritise what debates I wish to continue. Edited March 26, 2011 by Karen A Quote Share this post Link to post Share on other sites
GaryS Report post Posted March 26, 2011 Sorry I did not intend to presume to comment on what encouragement you offer the NAS and did not explain myself well. I commented on what I observed on the web site.I looked at length at the website and saw lots of information offered by one person.I tend myself when offering advice to refer people to the NAS because I believe their information is excellent .If I myself am looking for information I always check the credentials of the person offering advice because that is how I was trained.But it is a personal opinion and it is for anyone to decide for themselves I guess. I do not intend to get into any more debate.You may not be aware but I have taken a break from the Forum.Having clocked up 5000 posts doing similar work to Debbie and having been involoved in other stuff elsewhere I am working hard to gain some balance in my life.I am being very careful to prioritise what debates I wish to continue. Apology accepted and I hope I didn't come across too aggressive, if I offended you then I'm sorry too. I'm sure you realise, as you are performing similar work, how rewarding and absorbing but often thankless it can be. There have been a series of quite serious attacks from various locations on what we are doing and although everyone is entitled to their opinion, I would always hope that any criticism is able to be discussed rationally and the parties part agreeable without ill feeling. I did come to this form in an attempt to build some bridges that may have been obliterated by some that went before and I have no intention of antagonising anyone but will fight our corner; I accept I'm the new boy here and do not wish to upset forum harmony in any way. Debi's words can be very strange to some and we do our best to keep her exuberance within check without losing the quirkiness that so many appreciate. While the information on the NAS site is, as you say excellent, the shear size of the site can be somewhat daunting and presentation overwhelming. If you or anyone else has specific comments to make surrounding anything on the site we would be glad to hear, we don't set ourselves to be measured against any other organisation; we just offer what we consider, and have been told to be, useful information from an unusual perspective. When I do have the time, I try to introduce different visual mechanisms of imparting the information, for example the active splash graphic on the home page. We are planning more of this type of interaction, attempting to expand on TIPs to allow those with different sensory pathways to interact with complex information which may be helpful to them, again comments or suggestions very much appreciated. Quote Share this post Link to post Share on other sites
mygifts1306 Report post Posted March 26, 2011 (edited) interesting. Edited March 26, 2011 by mygifts1306 Quote Share this post Link to post Share on other sites
Karen A Report post Posted March 26, 2011 (edited) Apology accepted and I hope I didn't come across too aggressive, if I offended you then I'm sorry too. I'm sure you realise, as you are performing similar work, how rewarding and absorbing but often thankless it can be. There have been a series of quite serious attacks from various locations on what we are doing and although everyone is entitled to their opinion, I would always hope that any criticism is able to be discussed rationally and the parties part agreeable without ill feeling. I did come to this form in an attempt to build some bridges that may have been obliterated by some that went before and I have no intention of antagonising anyone but will fight our corner; I accept I'm the new boy here and do not wish to upset forum harmony in any way. Debi's words can be very strange to some and we do our best to keep her exuberance within check without losing the quirkiness that so many appreciate. While the information on the NAS site is, as you say excellent, the shear size of the site can be somewhat daunting and presentation overwhelming. If you or anyone else has specific comments to make surrounding anything on the site we would be glad to hear, we don't set ourselves to be measured against any other organisation; we just offer what we consider, and have been told to be, useful information from an unusual perspective. When I do have the time, I try to introduce different visual mechanisms of imparting the information, for example the active splash graphic on the home page. We are planning more of this type of interaction, attempting to expand on TIPs to allow those with different sensory pathways to interact with complex information which may be helpful to them, again comments or suggestions very much appreciated. I have no idea at all what went before and do not want to get into fighting any corner.I just made a passing comment.Having been here for three years and just returned from a break [should have read ''have been taking a break''] because it all got too much I am sorry but I have no wish to get into comment on another site. In any case I am sorry to have also gone way way off topic. Sorry Cmuir if you are still following. As for the details on design etc unfortunately I would be absolutely no help at all as Ben is the expert in such matters. Karen. Edited March 26, 2011 by Karen A Quote Share this post Link to post Share on other sites
anewman Report post Posted March 27, 2011 In terms of the scientific understanding of the condition, it makes sense. However, the needs of those with Aspergers and Autism as we know them now, are quite different. I feel the distinct labels help understanding of the conditions to some degree. Besides, when will Neurotypical Disorder be included in the DSM? Don't suppose there is any word on an ICD11 from the World Health Organisation? Quote Share this post Link to post Share on other sites
coolblue Report post Posted March 27, 2011 http://dsm5watch.wordpress.com/icd-11/ cb Quote Share this post Link to post Share on other sites
GaryS Report post Posted March 27, 2011 In terms of the scientific understanding of the condition, it makes sense. However, the needs of those with Aspergers and Autism as we know them now, are quite different. I feel the distinct labels help understanding of the conditions to some degree. Besides, when will Neurotypical Disorder be included in the DSM? Don't suppose there is any word on an ICD11 from the World Health Organisation? Forgive me but I don't understand how refining a classification of observed behaviours refine the scientific understanding of the condition? Neurotypical Disorder Quote Share this post Link to post Share on other sites
lsw146 Report post Posted March 28, 2011 Wow what a read!!!! As a mother whose 16 year DD has just recieved a diagnosis of Aspergers the idea that it is going to be removed as a seperate diagnostic confused me but at the same time when I explain her issues to people who know nothing about AS I say it is part of/a type of Autism. I also have a friend whose DS has just been diagnosed with Autism and is very different to my DD. Her DS quite clearly appears much more challenged on the communication front as his language and intereaction skills are delayed; my DS has always been very verbal but the torment and the challenge of understanding and communicating in the NT world is extremely tiring for her and on a bad day her autism is very apparent but because of her good days very confusing to those who don't know her. (Does that make sense?) She may not sit in class ticcing, being aggressive or confrontational (just examples of obvious, stereotyped behaviours not personal commentry on others) but she does silently scream and have a desperate urge to escape and saves it all up for when she gets home! Aspergers and Autism can seem so different but that's why Spectrum is a good word; all the colours of the rainbow are equal but some are easier to see at first. My DD's psychiatrist once said 'but she's not severe' 2 years later she is having suicidal thoughts because she can't keep up the pace of 'passing' so 'mild', 'moderate' and 'severe' classifactions don't really do it for me. Quote Share this post Link to post Share on other sites
BethK Report post Posted March 28, 2011 It's a wiki link, enough said Aspergers and Autism differ in many ways but it would be a shame to seperate them, as ASD is a wide spectrum and people tend to act more upon an 'ASD' tag IMO. Quote Share this post Link to post Share on other sites
coolblue Report post Posted March 28, 2011 It's a wiki link, enough said The American Psychiatric Association, who publish DSM, think it, too, and you'd expect them to know. http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=97 cb Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted March 28, 2011 My DD's psychiatrist once said 'but she's not severe' 2 years later she is having suicidal thoughts because she can't keep up the pace of 'passing' so 'mild', 'moderate' and 'severe' classifactions don't really do it for me. I heard Dr Luke Beardon from Sheffield Hallam University talk at a conference last week, delegates comprised teachers, teaching assistants, parents, psychologists, CAMHS workers, etc. His words: If any of the professionals here have ever diagnosed someone with 'mild' autism, be very ashamed. Lizzie x Quote Share this post Link to post Share on other sites
BethK Report post Posted March 28, 2011 The American Psychiatric Association, who publish DSM, think it, too, and you'd expect them to know. http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=97 cb I'm not a fan of wiki, too 'horrific' with it's termonology, plus we used to get the cain brought down on us with Uni work, if we ever qouted wiki lol Quote Share this post Link to post Share on other sites
coolblue Report post Posted March 28, 2011 I'm not a fan of wiki, too 'horrific' with it's termonology, plus we used to get the cain brought down on us with Uni work, if we ever qouted wiki lol Quite right too; but wikipedia can also be more reliable than any encyclopedia because world experts can update it on a daily basis, and it's an excellent place to start looking for original source material. cb Quote Share this post Link to post Share on other sites
