Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 I personally think that the reluctance to diagnose is due to their obligation to provide additional support for the child once a statement is in place. If your child needs some help then they should be giving it to him. They can always remove the statement at a later date when hopefully he improves/ recovers. Just my thoughts. Jane Advice on diagnosis I have heard from many people at our local autism parenting group that they wished they had had their children diagnosed earlier on. At our CDC centre they seem to think that you can't diagnose autism spectrum until 7. My son is due to start mainstream school in September and I wonder whether a formal diagnosis would be prudent and help with any statementing. The reason our CDC is reluctant is because once the diagnosis is there it will always be on his records which may affect him in later life. He is, what I would say, semantic pragmatic disorder. That is kind of the "social" side of autism but with delayed and curious speech. He is very high functioning and I think he will be o.k at school but just wonder what others think.Thanks in anticipation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 My daughter was diagnosed with semantic pragmatic disorder pre-school and starting school for her was disastrous. She was labelled anyway, but as 'naughty', by the teacher in nursery, but the label stuck in the mind of all the other kids. When she started school SPD didn't warrant any help for her, no statement, no DLA, etc, so by junior school, after my son was diagnosed ASD when he was 3, it became obvious to me that she had more symptoms than just SPD. She was referred to a child psychiatrist, who eventually diagnosed her with PDD-NOS (ASD), and she now has a full statement, more understanding from her teachers (who have put up with having things thrown at them, their lunches scoffed and their clothes rubbed with toilet water), support from various agencies and DLA. Before she started school, it didn't occur to me that she wouldn't be fine, but I was getting reports of her hyperventilating and running off, both of which I've never seen her do before. I can understand why the people you are speaking of wished for an earlier diagnosis, however, it all depends on the school he is going to. If your son needs speech therapy, he will be placed on the schools own special needs register as he is receiving therapy from an 'outside agency', he will probably receive an IEP and if any problems are noticed with him settling in, you should be informed. Sorry for waffling, I just felt that going into school with a diagnosis was so much better for my son than for my daughter, because of allowances made and support received. Diane Advice on diagnosis I have heard from many people at our local autism parenting group that they wished they had had their children diagnosed earlier on. At our CDC centre they seem to think that you can't diagnose autism spectrum until 7. My son is due to start mainstream school in September and I wonder whether a formal diagnosis would be prudent and help with any statementing. The reason our CDC is reluctant is because once the diagnosis is there it will always be on his records which may affect him in later life. He is, what I would say, semantic pragmatic disorder. That is kind of the "social" side of autism but with delayed and curious speech. He is very high functioning and I think he will be o.k at school but just wonder what others think.Thanks in anticipation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Diane and others thanks for your response. Diane, sounds like your daughter had a rough time at school, which is sad to hear. We went to the CDC centre yesterday and whether we would need a diagnosis to help with statementing but she said that our council were quite anit statementing and that the school is going to does have a lot of special need support. is at an assessment nursery (although he has now been taken off the assessment placement). He does have an IEP and we have arranged a transition meeting. I think for the time being all I can do is wait and see how he does at school and like you say keep in constant contact with the school. Thank you very much for your advice. > > My daughter was diagnosed with semantic pragmatic disorder pre- school and starting school for her was disastrous. She was labelled anyway, but as 'naughty', by the teacher in nursery, but the label stuck in the mind of all the other kids. When she started school SPD didn't warrant any help for her, no statement, no DLA, etc, so by junior school, after my son was diagnosed ASD when he was 3, it became obvious to me that she had more symptoms than just SPD. She was referred to a child psychiatrist, who eventually diagnosed her with PDD-NOS (ASD), and she now has a full statement, more understanding from her teachers (who have put up with having things thrown at them, their lunches scoffed and their clothes rubbed with toilet water), support from various agencies and DLA. Before she started school, it didn't occur to me that she wouldn't be fine, but I was getting reports of her hyperventilating and running off, both of which I've never seen her do before. I can understand why the people you are speaking of wished for an earlier diagnosis, however, it all depends on the school he is going to. If your son needs speech therapy, he will be placed on the schools own special needs register as he is receiving therapy from an 'outside agency', he will probably receive an IEP and if any problems are noticed with him settling in, you should be informed. Sorry for waffling, I just felt that going into school with a diagnosis was so much better for my son than for my daughter, because of allowances made and support received. > > Diane > > Advice on diagnosis > > > I have heard from many people at our local autism parenting group that > they wished they had had their children diagnosed earlier on. At our > CDC centre they seem to think that you can't diagnose autism spectrum > until 7. > > My son is due to start mainstream school in September and I wonder > whether a formal diagnosis would be prudent and help with any > statementing. > > The reason our CDC is reluctant is because once the diagnosis is there > it will always be on his records which may affect him in later life. > He is, what I would say, semantic pragmatic disorder. That is kind of > the " social " side of autism but with delayed and curious speech. He is > very high functioning and I think he will be o.k at school but just > wonder what others think. > > Thanks in anticipation > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I just read in today's Shafer Autism report that in a recent study those diagnosed with autism young were still with the diagnosis at a later age, whereas children diagnosed with less definite ASD eg PDD/NOS commonly had the diagnosis changed to autism as they grew. The value of a diagnosis is 1. in getting a Statement of Special Educational Needs (which if properly written gives a legal entitlement to what's written in at part 3) 2. in accessing any pre-school intervention - some LEAs, not many, have them and may provide up to about 12 hours early intervention weekly working with families in the home. 3) makes it easier to get Disability Living Allowance. Autism can clearly be diagnosed at age 2, some places can do it earlier (rare). I suppose another value of a formal diagnosis would be that if your child recovers with BioMed and educational intervention, professionals wouldn't then turn round and say "But that child never was autistic anyway" - the official view being that recovery is impossible. Margaret Advice on diagnosis I have heard from many people at our local autism parenting group that they wished they had had their children diagnosed earlier on. At our CDC centre they seem to think that you can't diagnose autism spectrum until 7. My son is due to start mainstream school in September and I wonder whether a formal diagnosis would be prudent and help with any statementing. The reason our CDC is reluctant is because once the diagnosis is there it will always be on his records which may affect him in later life. He is, what I would say, semantic pragmatic disorder. That is kind of the "social" side of autism but with delayed and curious speech. He is very high functioning and I think he will be o.k at school but just wonder what others think.Thanks in anticipation__________ NOD32 1.1588 (20060609) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 I just read in today's Shafer Autism report that in a recent study those diagnosed with autism young were still with the diagnosis at a later age, whereas children diagnosed with less definite ASD eg PDD/NOS commonly had the diagnosis changed to autism as they grew. The value of a diagnosis is 1. in getting a Statement of Special Educational Needs (which if properly written gives a legal entitlement to what's written in at part 3) 2. in accessing any pre-school intervention - some LEAs, not many, have them and may provide up to about 12 hours early intervention weekly working with families in the home. 3) makes it easier to get Disability Living Allowance. Autism can clearly be diagnosed at age 2, some places can do it earlier (rare). I suppose another value of a formal diagnosis would be that if your child recovers with BioMed and educational intervention, professionals wouldn't then turn round and say "But that child never was autistic anyway" - the official view being that recovery is impossible. Margaret Advice on diagnosis I have heard from many people at our local autism parenting group that they wished they had had their children diagnosed earlier on. At our CDC centre they seem to think that you can't diagnose autism spectrum until 7. My son is due to start mainstream school in September and I wonder whether a formal diagnosis would be prudent and help with any statementing. The reason our CDC is reluctant is because once the diagnosis is there it will always be on his records which may affect him in later life. He is, what I would say, semantic pragmatic disorder. That is kind of the "social" side of autism but with delayed and curious speech. He is very high functioning and I think he will be o.k at school but just wonder what others think.Thanks in anticipation__________ NOD32 1.1588 (20060609) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 In a message dated 10/06/2006 09:11:24 GMT Standard Time, catherine.devereux@... writes: Can anyone advise the best people we have in the UK to give an accurate diagnosis for our children? My son was diagnosed aged 2.5 by a paediatrician and clinical psychologist, but would like someone else to see him 7 years on. Hi , I'm new to this "game" but around here I've met quite a few people who are very happy with Daphne Keen www.daphnekeen.co.uk . She is a paediatric neurodevelopmental specialist. So far I've not heard any negative feedback about her whereas I have with several others. She sees patients privately (as well as on the NHS) and I believe a diagnostic assessment runs around £500. She is in SW London. I've been told that she is one of the respected authorities in the UK but whether or not that is true is obviously subjective. We have not seen her since we've been referred to her colleague on the NHS so this is a second-hand recommendation. She does a two hour assessment, generally giving an immediate dx. All the best, Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 In a message dated 10/06/2006 09:11:24 GMT Standard Time, catherine.devereux@... writes: Can anyone advise the best people we have in the UK to give an accurate diagnosis for our children? My son was diagnosed aged 2.5 by a paediatrician and clinical psychologist, but would like someone else to see him 7 years on. Hi , I'm new to this "game" but around here I've met quite a few people who are very happy with Daphne Keen www.daphnekeen.co.uk . She is a paediatric neurodevelopmental specialist. So far I've not heard any negative feedback about her whereas I have with several others. She sees patients privately (as well as on the NHS) and I believe a diagnostic assessment runs around £500. She is in SW London. I've been told that she is one of the respected authorities in the UK but whether or not that is true is obviously subjective. We have not seen her since we've been referred to her colleague on the NHS so this is a second-hand recommendation. She does a two hour assessment, generally giving an immediate dx. All the best, Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Our posts crossed - I see she is at St 's, a hospital with a lot of good people working there. Margaret Yes, that's right! We'll be seeing her colleague on the 27th of June, Dr. Al-Ahmed at St. 's, so I can update on how that goes if anyone's interested. Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Our posts crossed - I see she is at St 's, a hospital with a lot of good people working there. Margaret Yes, that's right! We'll be seeing her colleague on the 27th of June, Dr. Al-Ahmed at St. 's, so I can update on how that goes if anyone's interested. Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 "Can anyone advise the best people we have in the UK to give an accurate diagnosis for our children? My son was diagnosed aged 2.5 by a paediatrician and clinical psychologist, but would like someone else to see him 7 years on. ." Don't know! But perhaps you could go back to the original NHS service and ask them to reassess your son The Newcomen Centre and St 's Hospital should both be good but are likely to have long waiting lists. It depends on why you want the reassessment - wrong diagnosis? something missed? There are child psychiatrists in private practice who do assessments for purposes of Statementing, but they are very busy and few and far between. We had a recent private assessment where the psychiatrist made the additional diagnosis of severe mental retardation as well as confirming autism. He also wrote that he couldn't formally diagnose ADHD because of Henry's developmental level and his inability to cooperate with standard tests but reported that he showed significant signs of hyperactivity, should be referred to CAMHS and might benefit from medication. Now this will be VERY useful in persuading Henry's Dad to cooperate with diet and supplements (hooray!) because neither of us wants him drugged!and of course there's pretty good eveidence that ADHD is helped sgfnificantly by diet and supplements! These horrible labels can be very useful..... Margaret PS I find it hard to spot the new message when posts are preceded by a string of earlier messages. I scrolled down three times before finding your question. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 "Can anyone advise the best people we have in the UK to give an accurate diagnosis for our children? My son was diagnosed aged 2.5 by a paediatrician and clinical psychologist, but would like someone else to see him 7 years on. ." Don't know! But perhaps you could go back to the original NHS service and ask them to reassess your son The Newcomen Centre and St 's Hospital should both be good but are likely to have long waiting lists. It depends on why you want the reassessment - wrong diagnosis? something missed? There are child psychiatrists in private practice who do assessments for purposes of Statementing, but they are very busy and few and far between. We had a recent private assessment where the psychiatrist made the additional diagnosis of severe mental retardation as well as confirming autism. He also wrote that he couldn't formally diagnose ADHD because of Henry's developmental level and his inability to cooperate with standard tests but reported that he showed significant signs of hyperactivity, should be referred to CAMHS and might benefit from medication. Now this will be VERY useful in persuading Henry's Dad to cooperate with diet and supplements (hooray!) because neither of us wants him drugged!and of course there's pretty good eveidence that ADHD is helped sgfnificantly by diet and supplements! These horrible labels can be very useful..... Margaret PS I find it hard to spot the new message when posts are preceded by a string of earlier messages. I scrolled down three times before finding your question. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 "Hi , I'm new to this "game" but around here I've met quite a few people who are very happy with Daphne Keen www.daphnekeen.co.uk . She is a paediatric neurodevelopmental specialist" Our posts crossed - I see she is at St 's, a hospital with a lot of good people working there. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 "Hi , I'm new to this "game" but around here I've met quite a few people who are very happy with Daphne Keen www.daphnekeen.co.uk . She is a paediatric neurodevelopmental specialist" Our posts crossed - I see she is at St 's, a hospital with a lot of good people working there. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Tom was diagnosed at Sutherland House in Ravenshead - they are superb and able to note subtleties for diagnosis not just " ASD " . They've seen him twice - sadly he'd regressed a lot between the first and second visits. > > I have heard from many people at our local autism parenting group that > they wished they had had their children diagnosed earlier on. At our > CDC centre they seem to think that you can't diagnose autism spectrum > until 7. > > My son is due to start mainstream school in September and I wonder > whether a formal diagnosis would be prudent and help with any > statementing. > > The reason our CDC is reluctant is because once the diagnosis is there > it will always be on his records which may affect him in later life. > He is, what I would say, semantic pragmatic disorder. That is kind of > the " social " side of autism but with delayed and curious speech. He is > very high functioning and I think he will be o.k at school but just > wonder what others think. > > Thanks in anticipation > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Tom was diagnosed at Sutherland House in Ravenshead - they are superb and able to note subtleties for diagnosis not just " ASD " . They've seen him twice - sadly he'd regressed a lot between the first and second visits. > > I have heard from many people at our local autism parenting group that > they wished they had had their children diagnosed earlier on. At our > CDC centre they seem to think that you can't diagnose autism spectrum > until 7. > > My son is due to start mainstream school in September and I wonder > whether a formal diagnosis would be prudent and help with any > statementing. > > The reason our CDC is reluctant is because once the diagnosis is there > it will always be on his records which may affect him in later life. > He is, what I would say, semantic pragmatic disorder. That is kind of > the " social " side of autism but with delayed and curious speech. He is > very high functioning and I think he will be o.k at school but just > wonder what others think. > > Thanks in anticipation > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 rexel45@... wrote: > Our posts crossed - I see she is at St 's, a hospital with > a lot of good people working there. > Margaret > > Yes, that's right! We'll be seeing her colleague on the 27th of June, > Dr. Al-Ahmed at St. 's, so I can update on how that goes if > anyone's interested. > Darla > > I certainly would like to hear about it and many thanks for the tip, had not heard of her before! Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 rexel45@... wrote: > Our posts crossed - I see she is at St 's, a hospital with > a lot of good people working there. > Margaret > > Yes, that's right! We'll be seeing her colleague on the 27th of June, > Dr. Al-Ahmed at St. 's, so I can update on how that goes if > anyone's interested. > Darla > > I certainly would like to hear about it and many thanks for the tip, had not heard of her before! Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Sirr wrote: > Tom was diagnosed at Sutherland House in Ravenshead - they are > superb and able to note subtleties for diagnosis not just " ASD " . > They've seen him twice - sadly he'd regressed a lot between the > first and second visits. > > > > > > I have heard from many people at our local autism parenting group > that > > they wished they had had their children diagnosed earlier on. At > our > > CDC centre they seem to think that you can't diagnose autism > spectrum > > until 7. > > > > My son is due to start mainstream school in September and I wonder > > whether a formal diagnosis would be prudent and help with any > > statementing. > > > > The reason our CDC is reluctant is because once the diagnosis is > there > > it will always be on his records which may affect him in later > life. > > He is, what I would say, semantic pragmatic disorder. That is > kind of > > the " social " side of autism but with delayed and curious speech. > He is > > very high functioning and I think he will be o.k at school but > just > > wonder what others think. > > > > Thanks in anticipation > > > > > > > > Hi Steph, Pardon my ignorance but where's Ravenshead? x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Sirr wrote: > Tom was diagnosed at Sutherland House in Ravenshead - they are > superb and able to note subtleties for diagnosis not just " ASD " . > They've seen him twice - sadly he'd regressed a lot between the > first and second visits. > > > > > > I have heard from many people at our local autism parenting group > that > > they wished they had had their children diagnosed earlier on. At > our > > CDC centre they seem to think that you can't diagnose autism > spectrum > > until 7. > > > > My son is due to start mainstream school in September and I wonder > > whether a formal diagnosis would be prudent and help with any > > statementing. > > > > The reason our CDC is reluctant is because once the diagnosis is > there > > it will always be on his records which may affect him in later > life. > > He is, what I would say, semantic pragmatic disorder. That is > kind of > > the " social " side of autism but with delayed and curious speech. > He is > > very high functioning and I think he will be o.k at school but > just > > wonder what others think. > > > > Thanks in anticipation > > > > > > > > Hi Steph, Pardon my ignorance but where's Ravenshead? x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 sorry, North of Nottingham, think it might now be called the Newsome centre but it comes under either name on Google. > > > > > > I have heard from many people at our local autism parenting group > > that > > > they wished they had had their children diagnosed earlier on. At > > our > > > CDC centre they seem to think that you can't diagnose autism > > spectrum > > > until 7. > > > > > > My son is due to start mainstream school in September and I wonder > > > whether a formal diagnosis would be prudent and help with any > > > statementing. > > > > > > The reason our CDC is reluctant is because once the diagnosis is > > there > > > it will always be on his records which may affect him in later > > life. > > > He is, what I would say, semantic pragmatic disorder. That is > > kind of > > > the " social " side of autism but with delayed and curious speech. > > He is > > > very high functioning and I think he will be o.k at school but > > just > > > wonder what others think. > > > > > > Thanks in anticipation > > > > > > > > > > > > > > > Hi Steph, > Pardon my ignorance but where's Ravenshead? > x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 My son have been diagnosed by DR.Al-Ahmed and Dr. Keen; in my opinion Dr. Al-Ahmed is the best!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 rexel45@... wrote: > Our posts crossed - I see she is at St 's, a hospital with > a lot of good people working there. > Margaret > > Yes, that's right! We'll be seeing her colleague on the 27th of June, > Dr. Al-Ahmed at St. 's, so I can update on how that goes if > anyone's interested. > Darla > Hi Darla, What exactly is Dr Al-Ahmed's title? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Hi , I think she's probably one of the two most highly regarded diagnosticians in this PCT and given 's age (24 months), that is why we were referred to her. We were referred to her initially by 's pediatrician but had the referral bumped up by the SLT so we weren't *just* referred to her because she's the most local ped, IYKWIM!!! I *think* she does take referrals outside her PCT, there was a recent dispute over this which we just caught the tail end of the discussion - a change in directives or something. It is worth trying to get a referral and see what happens. The phone number at St. 's for her department (Developmental Paediatrics Services) is 020 8725 3759. You could tell them that you have a complex diagnosis, etc and ask if she takes referrals outside her PCT. Let me know what you find out - if it's a dead end then I can ask around and see if I can get anymore info. Darla In a message dated 13/06/2006 11:27:14 GMT Standard Time, catherine.devereux@... writes: Thanks Darla - is she the paed most local to you? Does she take > referrals from outside her PCT do you know?Many thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 Hi , I think she's probably one of the two most highly regarded diagnosticians in this PCT and given 's age (24 months), that is why we were referred to her. We were referred to her initially by 's pediatrician but had the referral bumped up by the SLT so we weren't *just* referred to her because she's the most local ped, IYKWIM!!! I *think* she does take referrals outside her PCT, there was a recent dispute over this which we just caught the tail end of the discussion - a change in directives or something. It is worth trying to get a referral and see what happens. The phone number at St. 's for her department (Developmental Paediatrics Services) is 020 8725 3759. You could tell them that you have a complex diagnosis, etc and ask if she takes referrals outside her PCT. Let me know what you find out - if it's a dead end then I can ask around and see if I can get anymore info. Darla In a message dated 13/06/2006 11:27:14 GMT Standard Time, catherine.devereux@... writes: Thanks Darla - is she the paed most local to you? Does she take > referrals from outside her PCT do you know?Many thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 rexel45@... wrote: > Hi , > > The best info that I can get on her is that she is " Consultant > Paediatrician, Special Education Needs " and also holds a position as > chair (or head) of Community Child Health for a local NHS trust. Her > name is Dr. Suhaila Al-Ahmed but I cannot find her credentials > anywhere and they were not listed > > on the appointment letter that we received. > > > > Sorry don't know more about her credentials, perhaps when her report > comes through I can tell you more. > > Regards, > > Darla > > Thanks Darla - is she the paed most local to you? Does she take > referrals from outside her PCT do you know? Many thanks > In a message dated 12/06/2006 11:51:25 GMT Standard Time, > catherine.devereux@... writes: > > rexel45aol (DOT) com <mailto:rexel45%40aol.com> wrote: > > > Our posts crossed - I see she is at St 's, a hospital with > > a lot of good people working there. > > Margaret > > > > Yes, that's right! We'll be seeing her colleague on the 27th of > June, > > Dr. Al-Ahmed at St. 's, so I can update on how that goes if > > anyone's interested. > > Darla > > Hi Darla, > > What exactly is Dr Al-Ahmed's title? > > > > Quote Link to comment Share on other sites More sharing options...
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