Nora

Thanks Karen, I will definitely be looking into it all. There is obviously a huge discrepancy between his test results. I think I will wait till I get his report and then email doc with any queries. And we have a meeting with EP in a month. Parents Eve is coming up soon as well so I hope they will now do something to encourage the "high verbal IQ" side of things. I wondered if you had seen the book "Misdiagnosis and Dual Diagnosis of Gifted Children and Adults" by James T Webb (and others. A couple of interesting quotes: Since people with Aspergers Disorder function at an average or above average intellectual level, it appears that there may be a true relationship between Aspergers Disorder and giftedness. It can be difficult to differentiate between some gifted children and children with ASP. In fact, there may be a graduation, rather than ASP being a discrete category. That is, there may be increasing degrees of characteristic behaviours that end up with an impairment that is then called ASP. Cheers, Nora X

Thanks again for your advice. I wonder if I should email this guy and ask if we need to be referred elsewhere. It will be interesting to see what the report says - I got the impression that there would be recommendations for school but this wasn't clarified. I hope that for our £££ we will get something comprehensive. I wish now I had asked more questions. He kind of said that the spelling and maths problems would become less important as he grew up and that they had Profs there who couldn't take away at a darts game so perhaps he did not see the problems as being severe. He seemed to be a top dog guy so I would imagine that he would have referred us on if necessary. And, fair play to the guy, the cheque was made out to some hospital foundation trust type thing rather than to his personal bank account. I am certainly very pleased that we went. We have some answers! Still taking in all in... Thanks, Nora X PS. Thanks for link Karen

The guy who did the assessment is a Chartered Clinical Psychologist, and heads the Department of Paediatric Psychology at big city hospital. His areas of expertise include asp and autism. I hope that fits the bill? He's going to write a full report for us. At this moment the anxiety of the past 5 years has lifted. The teacher that told us that they thought he might have asp 5 years ago unleashed years of worry. Only those of a certain age can remember Magnus Pike! Thanks, I will definitely keep an eye on things. Nora X Mother of Magnus Pike II

Thank you so much for replying. I am coming down from the initial relief and realising that we still have the same kid as yesterday - as I would have done if we had got a positive dx. Badad, I think you could have hit the nail on the head with the incessant talking being a nervous type thing. The EP brought this possibility up as well. And, he came out of school last week and launched into a huge monologue on collector cards to an unsuspecting parent. Today in the assessment, he reminded me of Eddie Izzard! He was leaping around and gesticulating and going off on wild tangents - even the doc was laughing. It was quite barking! All very good but not sure how it all fits with the norms of school. Thanks Karen, I will definitely be keeping an eye on things. He is officially over a year behind in his writing and I don't want to see him put in a low ability class etc. He was put on a low ability table at his last school which was gutting. In his assessment today, he was given sums like 4 minus 2 and he was adding them and getting 6.... just not looking properly! I will definitely look out the book you mention. Thank you. Nora X

Hi, We are back from our assessment and my son does not fit the profile of Aspergers. His verbal IQ was scored in the top 1% which I guess explains the incessant talking. He scored in the top 25% of some of the other tests and poorly on the visual spatial (maths and spelling). It seems that his eccentricity and creativity have been mistakenly seen as being signs of asp. I too have fanned the flames. It has caused a lot of worry. Thank you so much for taking the time to answer all my questions. Nora X

Hi Mumble, Oh dear, definite misunderstandings here... I definitely do not want to pay this guy for a dx. I don't want a positive dx. I am hoping that he is going to say my son does not have asp. He is also the NHS guy for our area and is well known so I would hope that he's not going to be handing out dx's. I have just been consumed with worry about this ever since it was first mentioned so hopefully we can get some answers out of this guy. If he says my son does not have asp then it will be the best £££ I have ever spent. If he does have it then we can take it from there and face the future with more knowledge. Perhaps he will fall at the high end of normal and might benefit from some social skills support. Hopefully the not knowing will be over. I definitely don't want my son to give the "right" answers. I haven't given him any info or prompts on the questions he will be asked even though I have asked him some myself to see what he says. I am not sure how I will fare on my questions as I do know the "right" answers. Of course I will tell the truth but some of the questions are not so easy to answer - they can be either yes or no. Hopefully I will get to have a good chat with the guy. Sorry for misunderstandings, Thanks, Nora X

Hi Karen, Thanks for replying. I am not really sure what you mean in your mail. Aspergers has intermittently been mentioned to us over the past few years and I would just like to know one way or the other. Are you saying that we should have gone for an assessment first before going for a dx? I hope this doc is going to give us an assessment of strengths, weaknesses and some strategies to get the best out of son. Perhaps calling it a dx is the wrong word and an assessment is what we'll get? When I wrote to the doc, I just said that we were concerned our son might have asp. He has sent us a few forms to fill in but they are not asp specific. Thanks, Nora X

Thanks Justine, What you have written is very interesting. I have asked my son some of these questions. In my amateur opinion, he did immediately get the theory of mind questions and he seems good with abstract questions BUT he had problems with the friend questions I asked him. We had to convince him recently that just because the mayor had given him a mug at Cubs, did not mean that she was a friend. And just because the bullies had apologised, did not make them friends either. I asked him why his friends were his friends and his answers were useless but then the next day, in the car, I asked him again and his answer was good. Days after the event, he also came out with the fact the bullies were only his friend because they'd told to be his friend. And yet he'd come out of the school on the day they apologised saying that it was the best day at school ever because he now had loads of new friends. I think some of the answers can depend on the time it takes to answer them as well. It's going to be an eye opener seeing what answers he gives. Thanks Js Mum, He very recently got tested for dyslexia and the test was ok. I was a bit disappointed as I hoped that might explain some of the issues with his writing. He is now going to get a different dyslexia test from a student at school and we will get back a report and some recommendations. Along with all my other fears and paranoia is that they could say he has aspergers when in fact he does not. From where I am sitting, I like the idea that they do not give them out willy nilly but it's distressing and wrong that there are people out there who are fighting to get one. Nora X

Thanks for that Badad, I have to confess that I have been looking suspiciously at DH's vast cd collection and my Dad's habit of counting out grapes for his breakfast! Don't ever give me a medical dictionary! I also keep reminding myself of my very oldest best friend. When we were teenagers, he had huge collections of war memorabilia and photographic equipment and could monologue in a very boring way for hours on favourite subject. Now he is in his 40's and he's the most interesting, stimulating, good listening and kind person you could ever meet. At the moment son is fairly happy but the school move from wild, anarchic local school to snooty posh one has been hard for him. He certainly blended into the background more at the old school but at least now he has the chance to do his best with his schoolwork. He's now one of only 4 kids that need extra help whereas it must have been almost the whole class at the old school. He is still behind in maths and very behind in writing but as the teacher said, you get kids who's writing is perfect, grammar perfect, capital letters and full stops perfect and yet everything they have written is dull and boring - this cannot be said for son's writing - even if there are no full stops, beginnings or endings!!! The worry is that he will be picked on for being "weird" at secondary school. But of course NT kids can be weird too! I've told him to tell them that it's better to be weird than boring! I hope we don't get a dx of aspergers and I hope that those of you who do need and want one do get one. Cheers, Nora X

Thanks Badad, I think you are right and my DH would definitely agree. I rue the day that anyone first mentioned aspergers to me (5 years ago). I am now totally paranoid (fueled by the internet). Maybe I am right to be paranoid? Son's last teacher told me that we are all somewhere on the spectrum. I hope this doc is going to say that my son does not have it - he's just a bit quirky, creative and eccentric and the world needs people like that or we'd all be boring! Fingers crossed. Nora X

Thanks for all your replies. I have filled in several of the on-line questionnaires and I would say that he is at the high end of normal/bottom end of as. Some of the questions are very hard to answer and could be either yes or no, depending on the situation. I did a systemizing quotient questionnaire and he was way over on the other side of the chart to the cluster of asd dots but he wasn't alone over there, there were just a few of the asd yellow dots around him. DH filled in a questionnaire so that I could compare it to mine and amazingly we came out with almost exactly the same score even though we had answered some questions quite differently. Again, this score was on the borderline of the where "normal" ends and asd starts. Does he prefer to do things on his own? Answer = Yes and No. I guess the chances of him being given a dx of asp is highly unlikely unless he really does have it right? My son is helped by a TA in class and she mentioned asp to the class teacher. This was the 4th time it's been mentioned by schools (3 teachers and EP, ). 2 SENCOs, 1 EP and one Head have said that he does not have it. He's also had the hearing test! Only once though. The recent bullying at school (being called weird and being told to shut up) has stopped. It's a "nice" small school. Dread the thought of it happening at secondary school where the bullies will be less likely to stop when asked. I am struggling to remember things like whether or not he lifted his arms up to be picked up. He was always so happy and smiley that I would not have picked up on issues like him playing alone although I think he did quite a bit. We would go to the park after school and yes, he definitely would hang out with his mates and chat but he would also go and make dust whilst all the other kids played a big game together. Thanks again for your helpful and interesting replies. I will let you know how the dx goes next week. Nora X

Thanks, I can now see how subtle and complex it all is now. My son is very outgoing, happy and friendly which I think has masked some of the issues. We have moved him away from the naughty kid to another school but I have seen his other best friends go up to him and hit him and he's just stood there and taken it. There was a catalogue of horror stories about the naughty kid (swearing at teachers, spitting, violence, flashing) and yet my son was always very loyal towards him. This kid was very dominating. I think my son can have normal conversations but these will probably be on his favourite subjects. He is so awkward when meeting others in the street - I am so conscious of it. Only yesterday we had an encounter with an old acquaintance and the daughter just stared at him, raised her eye brows, pulled a face, looked at him as if he were crazy and may have even said "what's he on about?" This happens all the time. I have also seen him ignore his friends when they have tried to talk to him. You can see that the other kids don't know what to make of him. He's 10 now so I am concerned about what the future will bring for him. I spoke to the EP and she is going to come back and observe him and then we get to have a meeting. She was going to mention the Social Stories stuff to the Head. The Head told me that when chosen to make a suggestion in assembly, he had gone on and on without stopping. This is something the EP had commented on during her last visit. I am however still really hoping that the doc at the dx will tell us that he's just a bit creative and eccentric with a few mild autistic traits and that we have nothing to worry about. Nora X

Hi again, We are going for our private dx next week. Hopefully we will get some answers and advice. Needless to say I am stressing out. Just a few questions if anyone can help…. Do you know which “Criteria” they are most likely to use for the dx? It seems that some are harder to pass than others. I think that my son may not reach the full criteria for a dx for aspergers but I think he will score more highly than your average kid. Could he therefore be diagnosed with something else like “on the autistic spectrum” or some other term? Even if he does tick many boxes, he may not qualify for “the disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning” part. How do they judge that??? Tony Attwood in his book mentioned children who are in a grey area that don’t quite fit the full dx - this may well be my son. I was also wondering how exactly they might decide on whether or not he has “failed to develop peer relationships appropriate to developmental level”. What if he had a really good friend who other kids kept away from because of his behavior problems? Is this a good friendship or is my child not getting the plot? Thanks. I will let you know how it goes next week. Nora

My son's friends are allowed to play resident evil which is about slashing and killing zombies. During an argument, one of my son's friends went downstairs and came back wielding an axe! Having said that, I can't imagine most kids contemplating such an action. Can't help linking it with watching the video game though. Nora X

Many thanks, I feel we are doing the right thing. I will let you know how it goes. Nora X

Thanks K, This guy specialises in: Aspergers Autism (including nutritional aspects of autism) Children's behaviour and development Family relationships and their effects on children Attachment and security issues in children Attachment disorders and problems caused by disturbed attachments Hyperactivity ADHD He's Head of the Department of Paediatric Psychology at big city hospital so I cannot imagine that he's reached this position and is now handing out dx's to anyone that pays! Thanks for sharing your experience with me. Nora X

Hi again, I have found out that the person recommended to me to do the private dx of my son is Head of Department of Paediatric Psychology at our nearest big city hospital. I was told that he also does the NHS dx. I appreciate everyone's advice to go down the NHS route as this carries more weight and I fully intend to that as well. But we could be in this guy's office within a very short time. Surely his dx would mean something to the necessary powers? It would help us enormously to know that we were on the right or wrong track. Thanks again, Nora X

Thanks again for your help. If you look up "theory of mind" you will find some interesting ideas. I have woken up today with the usual Yes, No, Yes, No, Yes, No..... I also forgot to mention that his reading has always been ok. I am going to speak with the Head who has told me she will speak to the Ed Pycho again. Thanks Nora

Dear Sally Thanks for trying to help. Here is a copy of my original post a few days ago: Hi, I would be really really grateful for your help and advice… I am feeling pretty confused and unhappy. My son is 10 and Aspergers was first mentioned when he was back in Year 1. I have been worried about it ever since but teachers/SENCOs/Heads have said that he doesn’t have it – “he’s very engaging” is what his last SENCO told me. At first, he seemed very very bright, he learnt his numbers and alphabet quickly and was a very precocious talker. He could recite passages from books at a very early age and used to call out the isle numbers in supermarkets. It came as a great shock to see in his Yr 2 SATS results that he was behind in everything – a whole year behind in his writing. His spelling is terrible and yet he can write the most creative, imaginative stuff. He has invented several games. He’s recently moved to a new school and has been looked at by an Ed Pysche for the second time. The first one didn’t think he had Aspergers. The new one obviously couldn’t diagnose but said that he certainly showed many of the characteristics of Aspergers. He is registered as having SEN and is getting help with spellings, handwriting and organising his work. The Ed Pysche said that school are doing all they can and that getting a diagnosis wouldn’t really change much other than perhaps getting advice from an Autistic specialist. I am now torn between going down the route of diagnosis or just waiting to see how things develop. I kind of feel happier thinking of his as being a bit eccentric and creative and am scared of him being labelled. But then I read that children who had had an earlier diagnosis did better in the long run. I can see that it could help us train him to be more socially aware if necessary, to understand more and of course he has secondary school looming. He doesn’t have any extreme or problem behaviours that are not being managed. He is ok with abstract thought, has good eye contact, is ok with routine changes and understands other people’s emotions, he doesn’t have tantrums BUT, he can talk incessantly, other kids have called him weird, he can make a lot of silly, loud noises and makes strange physical movements and facial expressions, he can sometimes take things literally, has problems with loud noises, has a limited diet and has found appropriate friendships difficult. I fear that there is low level bullying going on at school – he came home yesterday with marks on his face that had been made by the board rubber. His first obsession was trains but he never ever lined them up but he did make train noises all the time. He is incredibly smiley and friendly and will talk to anyone. I am spending hours trawling through websites, answering questionnaires and coming up with Yes, No, Yes, No, Yes, No. Perhaps he is borderline if that’s possible? I keep asking him test questions to try and find an answer. I am worrying 24 hours a day. I think I need to prepare myself for them actually saying that he does have it if I go down the diagnosis route. Please can anyone give me some wisdom and advice. Thank you, Nora X

Dear BD, Many thanks for taking the time to give me such an interesting and knowledgeable answer. Yes, it does all make sense to me and I can see how complicated it can all get. I am going to do some more research into this. My son certainly ticks a lot of the other boxes - perhaps he's "just" slightly eccentric... well he definitely is slightly eccentric which is not necessary a bad thing of course. Thanks again for your fascinating reply. Nora

Hello, I was wondering if it is possible to be good with abstract thought and yet still have aspergers? My 10 year old son certainly ticks many boxes and we are at the point of starting the road to diagnosis. However, he readily gets tricky questions right. Amongst others, I asked him the questions in Tony Attwood's book about the double bluff and the white lie and he got them right without hesitating. Is this area of misconception part of the actual diagnosis or it is just a possible area of strength for my son but wouldn't mean that he couldn't have aspergers because he ticks so many of the other boxes? Many thanks, Nora

Dear Karen Many thanks for your reply. My son is 10 and we are just starting down this road. I understand what you mean when you say that more difficulties can arise with age. I picked my son up from football practise after school yesterday and was dismayed to see him throwing leaves around and lying down on the pitch whilst the game continued around him. This might not have looked so odd at age 5. It's very reassuring to hear how well your son is now doing at secondary school. Thanks, Nora

Hi, I'm busy doing loads of research as my son is showing several symtoms of ASD. Just came across this and wondered if anyone knows anything about it? Perhaps as his problems don't seem too severe, this could be the answer? I admit that me and dh could tick a few boxes on the mild side of things. Broad Autism Phenotype Definition: Autism is a spectrum disorder, meaning a person can be a little autistic or very autistic, and individuals can have varying symptoms. The term broad autism phenotype describes an even wider range of individuals who exhibit problems with personality, language and social-behavioral characteristics at a level that is considered to be higher than average but lower than is diagnosable with autism. Individuals who meet the criteria of the broad autism phenotype are identified through a test called the "Social Responsiveness Scale." It is theorized that parents who are a part of the broad autism phenotype are more likely than other parents to have multiple children with autism. Some studies seem to support this theory. Thanks, Nora

Thanks so much for your advice and support. I'm feeling incredibly stressed, unlike dh who seems to be taking it all in his stride. When I went to pick him up from school he was spinning around in the playground much to my dismay. Of course we will still love him no matter what but somehow the future seems as if it might be different for him now. It sounds like the dx process takes a while and takes place in stages which will hopefully give me time to deal with it a step at a time. I am building up to phoning the gp. I hope we get someone kind and understanding too. Thanks again, Nora

Hi, Many thanks for your reply. The school do seem to be trying really hard although it's hard to see much progress with his writing. Am I right in thinking that he could be on the Autistic Spectrum but fall short of a diagnosis of Aspergers? Could be diagnosed as having a ASD that isn't Aspergers? Or is having ASD a diagnosis? I am building up to phoning the gp but I now have half a library of books to plough through first - best to be armed! Good luck with your son too, Many thanks, Nora