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      Depression, Mental Health and Crisis Support   06/04/2017

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tabz2711

Please can anyone tell me whether the ADOS is 100% accurate

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tabz2711   

My daughter had an ADOS test after seeing a CAHMS nurse twice who said it was clear that she had aspergers and had showed the psychaitist all the results of the questionnaires we had filled in, observations of my daughter and our past history. My daughter was determined to fool the Ados test and she made sure that she looked at the Doctor at all times, she even said she acted as socialable as she could talking all the times and even waved her arms around lol(they will have her sectioned next) My daughter is 15 and very bright. She told the Doctor that she had plenty or friends and had no worries at school. She said that she was going to prove to everyone she did not have Aspergers.

 

When we went today the Cahms nurse said that she didn't have Aspergers as she did not score on the ADOS test so she couldn't have it.

 

My question is what do I do next something or leave it alone. I would be glad and happy if she did not have Aspergers but her behaviour and social skills tell me otherwise. Even the nurse phoned me the same day after the first appointment to make another appointment as it was so clear.

 

I don't want to seem as if I have Munchausen's by proxy but I have always known she is different from the other three and if it is not Aspergers then what is it.

I should feel very relieved that she does not have it but I am not as it is so clear to me, the nurse and psychartist, the only reason they asked for the ADOS test was to give my daughter more help at school and in later life.

I am a very mixed up mum today. any advice will be greatly received. Has anyone else experienced this and what did you do about it.

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My understanding is that the ADOS is just one small element of the diagnostic process and that it can't form the basis of a dx on its own.

 

The big problem with getting a dx for Asperger syndrome is that there's no one definitive test - the important thing is to build a profile through assessment, observation, history and tests (eg the ADOS). If your daughter is genuinely fooling the ADOS but does have AS, then her AS will be picked up through her profile.

 

My son's ADOS was borderline, but once everything else was taken into consideration he was given a dx of Asperger syndrome.

 

And how come it was the nurse explaining to you about the ADOS, and not the psychologist that did it? Sounds a little oversimplified to me. It's not as if just anyone can dx AS - you really need someone with knowledge and experience of AS to make a dx, not someone reading from a manual.

 

Trust your instincts. Ask for a more detailed, indepth approach to assessing your daughter, or a second opinion. Stick to your guns!!

 

Good luck

Lizzie x

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Bullet   

I have no idea about the ADOS test I'm afraid and I don't know whether your dd is Aspergers. If you and others believe she is then it is very possible she is frightened and is denying that she might be different. If you think that might be the reason, then please pass the following onto her.

When I was a child my parents both knew I was different and my dad wanted me to be assessed. My mum refused as she knew I was academically bright and wanted me in the same school as my sisters and she thought if I was diagnosed with something I'd be put in a special school. This was back in the 1980's and early 1990's. I had to go to hospital to have my height and weight measured as I was underweight and delayed in my growth and the paediatricians picked up that I was different and questioned my mum. She deliberately brushed aside their concerns and said I was fine, knowing I was not but not wanting me labelled. As this was before Aspergers had even been categorized she was unable to put all my aspects down as one cohesive whole. My lack of co-ordination was just me being clumsy. My lack of social skills was just because I was shy. My lack of selfhelp skills was because I was disorganised and didn't think. My lack of explaining things was again because I was quiet and scatterbrained. My way of walking and talking was just me. My obsession with reading the same book (and sometimes the same page) over and over was just me being me. My handflapping, ditto. She doesn't still know about my habit of smelling the paper on books or tearing bits of paper up, but she does know I often read books backwards. Again, put down to me being me. She brushed aside the little things like the fact I never took much interest in fashion or music.

So I grew up believing that all my difficulties, all the things I struggled with, were just me and I carried on thinking I was normal. I was getting my expected grades at school so what did it matter if I would spend breaktimes staring into space? Or even when I started VI form although I did start talking to a few people I couldn't then phone them up for a chat or go into town with them. The level of friendship was kept purely on the "work colleagues" level.

Then I went to university and because I was very immature and had little concept of the real world I was unable to cope properly. I struggled on because nobody told me that surviving on your bf's breakfast toast and yoghurts for several weeks was not normal (I'd run out of money and didn't know to ask for help). I didn't brush my hair so at 19 my mum had to cut it out. I didn't wash my bedsheets so ended up sleeping under a pile of towels.

And now I'm 31 and yes, I am married with two lovely children. But I daren't dare learn to drive as I can't predict what other people will do or keep multiple instructions in my head. I have a friend who lives in the same town as me but I can't phone her up for a chat and it takes a lot of courage to ask if she wants to visit or me to visit her. I can't read people's faces very well and can't do eye contact comfortably. I can't cope with shopping as everything gets too crowded and noisy. I have a degree and because I am not a teamplayer and find it very hard to think outside my routines and rigidity I've never had a job with any responsibility. I cannot co-ordinate myself enough to brush my hair, brush my teeth, wash my face, make sure my clothes are clean. On any day at least one of those things will be missing. Ironically I have no problems remembering the lads are clean and sorted, just myself.

The point I'm trying to make is that if you are Aspergers then forcing yourself to think you are NT can have serious consequences. I'm due to have an appointment next week to have it semi-officially confirmed if I'm on the spectrum. There is no adult provision in my area. All I can do is finally have confirmation of why I struggle with some things and then try and carry on as best I can. If I had had help earlier on in my life, I might have found some things easier to cope with.

Edited by Bullet

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tabz2711   
I have no idea about the ADOS test I'm afraid and I don't know whether your dd is Aspergers. If you and others believe she is then it is very possible she is frightened and is denying that she might be different. If you think that might be the reason, then please pass the following onto her.

When I was a child my parents both knew I was different and my dad wanted me to be assessed. My mum refused as she knew I was academically bright and wanted me in the same school as my sisters and she thought if I was diagnosed with something I'd be put in a special school. This was back in the 1980's and early 1990's. I had to go to hospital to have my height and weight measured as I was underweight and delayed in my growth and the paediatricians picked up that I was different and questioned my mum. She deliberately brushed aside their concerns and said I was fine, knowing I was not but not wanting me labelled. As this was before Aspergers had even been categorized she was unable to put all my aspects down as one cohesive whole. My lack of co-ordination was just me being clumsy. My lack of social skills was just because I was shy. My lack of selfhelp skills was because I was disorganised and didn't think. My lack of explaining things was again because I was quiet and scatterbrained. My way of walking and talking was just me. My obsession with reading the same book (and sometimes the same page) over and over was just me being me. My handflapping, ditto. She doesn't still know about my habit of smelling the paper on books or tearing bits of paper up, but she does know I often read books backwards. Again, put down to me being me. She brushed aside the little things like the fact I never took much interest in fashion or music.

So I grew up believing that all my difficulties, all the things I struggled with, were just me and I carried on thinking I was normal. I was getting my expected grades at school so what did it matter if I would spend breaktimes staring into space? Or even when I started VI form although I did start talking to a few people I couldn't then phone them up for a chat or go into town with them. The level of friendship was kept purely on the "work colleagues" level.

Then I went to university and because I was very immature and had little concept of the real world I was unable to cope properly. I struggled on because nobody told me that surviving on your bf's breakfast toast and yoghurts for several weeks was not normal (I'd run out of money and didn't know to ask for help). I didn't brush my hair so at 19 my mum had to cut it out. I didn't wash my bedsheets so ended up sleeping under a pile of towels.

And now I'm 31 and yes, I am married with two lovely children. But I daren't dare learn to drive as I can't predict what other people will do or keep multiple instructions in my head. I have a friend who lives in the same town as me but I can't phone her up for a chat and it takes a lot of courage to ask if she wants to visit or me to visit her. I can't read people's faces very well and can't do eye contact comfortably. I can't cope with shopping as everything gets too crowded and noisy. I have a degree and because I am not a teamplayer and find it very hard to think outside my routines and rigidity I've never had a job with any responsibility. I cannot co-ordinate myself enough to brush my hair, brush my teeth, wash my face, make sure my clothes are clean. On any day at least one of those things will be missing. Ironically I have no problems remembering the lads are clean and sorted, just myself.

The point I'm trying to make is that if you are Aspergers then forcing yourself to think you are NT can have serious consequences. I'm due to have an appointment next week to have it semi-officially confirmed if I'm on the spectrum. There is no adult provision in my area. All I can do is finally have confirmation of why I struggle with some things and then try and carry on as best I can. If I had had help earlier on in my life, I might have found some things easier to cope with.

 

Thank you so much for sharing your story with me, so much of what you have said is my daughter. I feel too that it would be better to have a DX so that she can understand why she is different and learn to embrace her differences and be proud of who she is.

take care

tabz

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UltraMum   

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=306&a=3280

 

This is a long artcle but lists many of the tests and checklists - here's the opening para ...

 

Diagnosis

Diagnosis requires close observation of behaviour as well as a developmental history from infancy. In particular, diagnosticians will be looking specifically for evidence of the triad of impairments and repetitive behaviour patterns. Since autism often co-exists with a number of other medical conditions this process is not as clear as it could be. Other learning disabilities and conditions can often throw the diagnostician off the track of a correct diagnosis. Even professionals close to autism find it difficult to recognise some individuals with the disorder (Larcombe 1998).

Edited by UltraMum

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Karen A   

Hi I cannot answer your question directly but can talk about our experience.Ben is 8.He has been seen by camhs and also had an ADOS performed by a specialist SALT.The ADOS showed he scored in a range that would allow him to access specialist ASD outreach services.However the psychiatrist still was not convinced enough to Dx Asperger syndrome.Ben is in the process of having a psychotherapy assessment as the psychiatrist felt he would benefit.The current position appears to be that Ben may have emotional difficulties related to my complex mental health issues when he was very young.So the short answer is that the psychiatrist[who we have a lot of respect for]does not think the ADOS is 100% accurate in this case.I should add ours is an extremely comlpex situation.Just wanted to add that having been here for several months and having found a home here-I am also a very mixed up mum today-don't even know which forum I belong on.So you are not alone.Karen.

Edited by Karen A

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Karen A   

Ultramum thanks for that post.I guess Ben is just a very difficult one to Dx.

Tabz sorry to sneak in on your thread.It just rang bells.Karen

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Kathryn   

Hi Tabz,

 

As I think I've probably said to you before, my daughter has gone through many phases of acceptance and denial after her late dx. She also seems to go through cycles of more and then less autistic behaviour. Earlier this year she was going out with us to retaurants and cinemas and even phoning her friends. She announced to us and to her consultant psych who was still doing home visits, "I'm not autistic any more", and chatted happily to her for half an hour. I didn't know if this was just an act to get Camhs off her back or if she really believed it, but a few weeks later she withdrew completely and stopped talking.

 

She has now accepted that she's autistic but still goes through phases when she appears more or less so and phases when she will play it down. Right now she is quite sociable, seeing her old school friends once a week. Yet she didn't see anyone at all for three months before that. Some days she is very articulate and expressive - other days she can barely ask for a drink. One day she went into complete overload when I thrust a new duvet I'd bought at her (silly me!). A few days later she was completely unfazed when I, her brother and two friends arrived at the front door all at once. People might draw very different conclusions about her based on an observation on any single day. I don't know what the ADOS entails, but I don't think a snapshot is an accurate way to judge whether someone has AS or not.

 

This is possibly a very confusing time for your daughter, Tabz. If she does have AS it may take her a long time to work through it all: it may be a bit like finding out one was adopted at birth, having to reassess your identity completely. It's difficult as a parent to know what to do to help - I wish I could offer advice but I'm still very mixed up myself!

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tabz2711   
Hi Tabz,

 

As I think I've probably said to you before, my daughter has gone through many phases of acceptance and denial after her late dx. She also seems to go through cycles of more and then less autistic behaviour. Earlier this year she was going out with us to retaurants and cinemas and even phoning her friends. She announced to us and to her consultant psych who was still doing home visits, "I'm not autistic any more", and chatted happily to her for half an hour. I didn't know if this was just an act to get Camhs off her back or if she really believed it, but a few weeks later she withdrew completely and stopped talking.

 

She has now accepted that she's autistic but still goes through phases when she appears more or less so and phases when she will play it down. Right now she is quite sociable, seeing her old school friends once a week. Yet she didn't see anyone at all for three months before that. Some days she is very articulate and expressive - other days she can barely ask for a drink. One day she went into complete overload when I thrust a new duvet I'd bought at her (silly me!). A few days later she was completely unfazed when I, her brother and two friends arrived at the front door all at once. People might draw very different conclusions about her based on an observation on any single day. I don't know what the ADOS entails, but I don't think a snapshot is an accurate way to judge whether someone has AS or not.

 

This is possibly a very confusing time for your daughter, Tabz. If she does have AS it may take her a long time to work through it all: it may be a bit like finding out one was adopted at birth, having to reassess your identity completely. It's difficult as a parent to know what to do to help - I wish I could offer advice but I'm still very mixed up myself!

 

Hi Kathryn

as per usual, you posts always strike a chord as your daughter seems so similar to mine. What you are describing is just what my daughter is like sometimes she is fine and then boom she reacts in such a way. At the moment she is going out and has friends, God help if there is a fall out and we have not even got to boyfriend problems yet. If she knew that I was posting here she would gte depressed and stay in bed for days so I delete the history as soon as I have finished on the site.

I just don't know what to do next, do I accept the results or take it further.

Tabzx

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JenRose   

LAst year we were told by CAMHS clinical psychologist that M had AS.

In our area it is the CAMHS psychiatrist that has the final say and she performed

the ADOS on M and he passed it and she said NO to AS.

 

Our Clinical Psychologist asked her to reconsider as M screams AS to any professional

that sees him but she wouldnt so we were left in a quandry.

 

Clinical psych couldnt/wouldnt go above Psychiatrist but was telling us that she had

never been wrong about a child with AS before and that in her opinion M had it.

 

So we went private and our psychologist said straightaway AS and he told us that the ADOS

is not a good test for AS/HFA dx as it is just ticking boxes and kids with AS/HFA are usually

very very clever and can quite often appear sociable and not show difficulties in the ADOS.

 

So, me being me i couldnt let this lie and i told the clinical psychologist this and behind the scenes

i found out a few months later there had been a big row between psychiatrist and psychologist and in

the end she discharged M and us saying that we didnt need her as we now had the private psych.

 

But i keep in touch with her and let her know how M is as she was very upset and felt that she

wasnt able to do her job properly and the best thing is the LEA have written to her asking her advice

as part of the asessment process so im hoping she will confirm.

 

Oops just realised im rambling, anyway so in my opinion and our psychs opinion ADOS is nowhere near

100% accurate, i could pass it and im AS :lol:

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tabz2711   
LAst year we were told by CAMHS clinical psychologist that M had AS.

In our area it is the CAMHS psychiatrist that has the final say and she performed

the ADOS on M and he passed it and she said NO to AS.

 

Our Clinical Psychologist asked her to reconsider as M screams AS to any professional

that sees him but she wouldnt so we were left in a quandry.

 

Clinical psych couldnt/wouldnt go above Psychiatrist but was telling us that she had

never been wrong about a child with AS before and that in her opinion M had it.

 

So we went private and our psychologist said straightaway AS and he told us that the ADOS

is not a good test for AS/HFA dx as it is just ticking boxes and kids with AS/HFA are usually

very very clever and can quite often appear sociable and not show difficulties in the ADOS.

 

So, me being me i couldnt let this lie and i told the clinical psychologist this and behind the scenes

i found out a few months later there had been a big row between psychiatrist and psychologist and in

the end she discharged M and us saying that we didnt need her as we now had the private psych.

 

But i keep in touch with her and let her know how M is as she was very upset and felt that she

wasnt able to do her job properly and the best thing is the LEA have written to her asking her advice

as part of the asessment process so im hoping she will confirm.

 

Oops just realised im rambling, anyway so in my opinion and our psychs opinion ADOS is nowhere near

100% accurate, i could pass it and im AS :lol:

 

Thank you for sharing this with me JenRose it was very interesting, The woman who saw my daughter also said that it was so clear that she had AS, I don't even know what she was whether a clinical nurse or mental health person. I am seeing her again in a few weeks on my own to see what the next step is, at least she has not been discharged yet.

thanks again Tabz

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tabz2711   

Quote from Jen Rose So we went private and our psychologist said straightaway AS and he told us that the ADOS

is not a good test for AS/HFA dx as it is just ticking boxes and kids with AS/HFA are usually

very very clever and can quite often appear sociable and not show difficulties in the ADOS.

 

The lady who assessed my daughter told us that a child with AS would not have been clever enough to try and cheat the ADOS test so that they would not be diagnosed with AS like my daughter did.

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Karen A   
Quote from Jen Rose So we went private and our psychologist said straightaway AS and he told us that the ADOS

is not a good test for AS/HFA dx as it is just ticking boxes and kids with AS/HFA are usually

very very clever and can quite often appear sociable and not show difficulties in the ADOS.

 

The lady who assessed my daughter told us that a child with AS would not have been clever enough to try and cheat the ADOS test so that they would not be diagnosed with AS like my daughter did.

 

Sorry I could not resist responding to the above remark re children with AS not being clever enough to try and cheat the ADOS test.If that is general intelligence then she is rather mistaken.Ben for one may have difficulties with social communication but he is also probably very intelligent indeed.Karen

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Hi,

this really concerns me too, our 10 yr old son is awaiting appt. with clinical pysch following initial appt. with paed ( who suspects AS ) if he faced with a questionnaire with multiple choice type answers he will definitely know what the 'correct' answer should be, even though he may not behave that way in real life.

He is intelligent enough to 'know' the right answer but this is totally at odds with his ability to demonstrate this in real life where the are too many variables, too much noise/distraction etc. to cope with.

Another problem we had in the initial appointment, despite me having a chat with the paed before and giving her an A4 sheet of his problems (to us, at least ) was that I found it really hard to be honest about him whilst he was in the room, especially when she asked him about making friends, and he said he had lots of friends :unsure:

I was very reluctant to dismiss this in front of him, and this applied to lots of the questions.

I wonder if, together, we were not giving a very accurate picture..... ?

 

wac

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tabz2711   
Hi,

this really concerns me too, our 10 yr old son is awaiting appt. with clinical pysch following initial appt. with paed ( who suspects AS ) if he faced with a questionnaire with multiple choice type answers he will definitely know what the 'correct' answer should be, even though he may not behave that way in real life.

He is intelligent enough to 'know' the right answer but this is totally at odds with his ability to demonstrate this in real life where the are too many variables, too much noise/distraction etc. to cope with.

Another problem we had in the initial appointment, despite me having a chat with the paed before and giving her an A4 sheet of his problems (to us, at least ) was that I found it really hard to be honest about him whilst he was in the room, especially when she asked him about making friends, and he said he had lots of friends :unsure:

I was very reluctant to dismiss this in front of him, and this applied to lots of the questions.

I wonder if, together, we were not giving a very accurate picture..... ?

 

wac

 

You have every reason to be concerned as I felt the same when my daughter was being assessed, I had no time without her to explain what living with her was like and how she struggles with friends and social skills. It would have been to cruel to say it in front of her and the reaction from her would have been hell afterwards. I too gave 2 A4 sheets of S's problems and tried to say as much as I could without upseting my daughter. I am now seeing the mental healh practioner on Tues by myself to discuss the results of the ADOS test.

I have been in touch with the area Autistic society who said that the ados test was an extra tool and all the other assessentmentss still need to be taken into consideration, otherwise hospitals would only do the ADOS test and not bother about family history assessments and all thoose questionnaires

good luch with your appointment with your son and be aware of the loop holes in the system.

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KarenT   

J had his first assessment last year and ADOS was carried out around the March. He was marked strictly but still scored well within range for AS, although I was told afterwards that ADOS is only one of many tools used in the assessment process and there would be no guarantee on this basis alone that he'd end up with a dx. This proved to be true - with subsequent tests, case history and observations the final outcome was inconclusive, although it was recognised that he had autistic traits.

 

He was reassessed in July this year and ADOS was carried out again as part of the assessment. Again he scored highly in that and with the additional tests/observations etc received diagnosis of AS. This was interesting because he was assessed on a particulary calm day but there were indicators present that would have shown up regardless of how stressed he might have been, such as his tendency to control, his unusual eye contact, imaginative play, his level of verbal ability etc.

 

I suspect that what you were told about children 'not being clever enough' to fake the test really means that if the traits are there in the child then they won't be able to hide them, as was the case with J. A child - and particularly and older, more aware child - may well be bright enough to know what the assessor is looking for in some respects (eg eye contact) but it would be extremely difficult for them to cover up everything in their personality that makes them autistic. Observation makes up a significant part of the assessment, because even if a bright child can come up with the 'right' answers at times they won't be able to cover the behavioural elements that can only be seen under expert observation, iykwim. One of the main issues with our children is that they can't control their behaviour in social situations, which suggests if they can then they won't be dx'd as autistic.

 

Karen

x

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Scout   

Hi

 

I am the wife of a (almost definite but in process of getting assessed) husband and we have 3 wondeful sons aged 4, 5 and 6. We have just had a call from the associate specialist pediatrics who has verbally diagnosed our eldest son with Asperger's. However, she has asked me whether, in her letter giving her conclusions, we would like her to label him with Asperger's or whether we would prefer it to be verbal for now and then re-review him in a year or us call if we felt a label would be useful. I am not sure what to do. Our 6 yr old (Yr 2) does fantastically at school in every area and although his teacher said she would have noticed he was a bit off "normal", a bit socially immature, naiive, he is a pleasure to teach and is going to do very well academically. That said, she recognises what I have told her and, now I have told her our concerns, she has noticed things like him discreetly touching any radiators he sees! However, the specialist said (and I know) that socially the gap between his maturity and that of his peers will widen. We have 2 other sons aged 5 (Yr 1) and 4 (reception) and they deal with social mishaps already better than he does. He is very difficult at home where the environment is less regulated and in holidays become s mroe difficult and in term time less. However, I knew something was amiss from the very beginning even if it is not obvious to those who don't know him well. He goes to a lovely prep school with 12 in a class and I think this has something to do with why he copes so well and is so happy. His teacher adores him, he is eager to please and interested in everything and is an intelligent conversationalist. That said, I would love some advice on whethr you (or anyone) thinks I should say yes or no to having it formalised in a letter. The specialist says it basically empowers people at school to treat him differently but he has no problems at school YET aside from sometimes being in a world of his own.

 

Please advise. I am worried that a formal letter will mean he can't attend stuff like Summer Camp (because I think with a special need, these things are not so easy to sign up to and yet he is well capable of having a rgeat time there and this year the staff said he was a delight (because he loves following the rules and being a good boy). We can always get the label later but we can't take it away once it's there. My husband had a really miserable time at many different schools and his parents sound like yours. They loved his academic ability and ignored the rest and as a result he was unhappy and went off the rails for a time as a teenager. This is his second marriage, he is 46 but the wonderful qualities of intelligence and passion for many things are lovely and we struggle through the times when he goes off the rails (when stressed, he communcates hardly at all, starts lying to me for no reason, goes financially a bit crazy) but we are still here, he is learning to comminicate well and no-one is perfect. His sons adore him and just think he is a whacky dad I think!!!!

 

I guess our son is (now anyway) very mildly affected and seems, if anything, a little eccentric, a bit silly sometimes. I am worried I about pushing it either way.

 

Thanks for reading this

 

SB

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oxgirl   
Hi

 

I am the wife of a (almost definite but in process of getting assessed) husband and we have 3 wondeful sons aged 4, 5 and 6. We have just had a call from the associate specialist pediatrics who has verbally diagnosed our eldest son with Asperger's. However, she has asked me whether, in her letter giving her conclusions, we would like her to label him with Asperger's or whether we would prefer it to be verbal for now and then re-review him in a year or us call if we felt a label would be useful. I am not sure what to do. Our 6 yr old (Yr 2) does fantastically at school in every area and although his teacher said she would have noticed he was a bit off "normal", a bit socially immature, naiive, he is a pleasure to teach and is going to do very well academically. That said, she recognises what I have told her and, now I have told her our concerns, she has noticed things like him discreetly touching any radiators he sees! However, the specialist said (and I know) that socially the gap between his maturity and that of his peers will widen. We have 2 other sons aged 5 (Yr 1) and 4 (reception) and they deal with social mishaps already better than he does. He is very difficult at home where the environment is less regulated and in holidays become s mroe difficult and in term time less. However, I knew something was amiss from the very beginning even if it is not obvious to those who don't know him well. He goes to a lovely prep school with 12 in a class and I think this has something to do with why he copes so well and is so happy. His teacher adores him, he is eager to please and interested in everything and is an intelligent conversationalist. That said, I would love some advice on whethr you (or anyone) thinks I should say yes or no to having it formalised in a letter. The specialist says it basically empowers people at school to treat him differently but he has no problems at school YET aside from sometimes being in a world of his own.

 

Please advise. I am worried that a formal letter will mean he can't attend stuff like Summer Camp (because I think with a special need, these things are not so easy to sign up to and yet he is well capable of having a rgeat time there and this year the staff said he was a delight (because he loves following the rules and being a good boy). We can always get the label later but we can't take it away once it's there. My husband had a really miserable time at many different schools and his parents sound like yours. They loved his academic ability and ignored the rest and as a result he was unhappy and went off the rails for a time as a teenager. This is his second marriage, he is 46 but the wonderful qualities of intelligence and passion for many things are lovely and we struggle through the times when he goes off the rails (when stressed, he communcates hardly at all, starts lying to me for no reason, goes financially a bit crazy) but we are still here, he is learning to comminicate well and no-one is perfect. His sons adore him and just think he is a whacky dad I think!!!!

 

I guess our son is (now anyway) very mildly affected and seems, if anything, a little eccentric, a bit silly sometimes. I am worried I about pushing it either way.

 

Thanks for reading this

 

SB

 

Hi SB, I read your post with interest.

 

I guess I would say that maybe you could ask yourself what you hope to achieve by getting the dx formalized. If you don't feel that he needs any extra help at the moment and is doing very well, then maybe you might feel that having it in writing will not make much difference.

 

On the other hand, you now know what the dx is, whether it is written down or not, and it is totally up to you who you share that information with anyway.

 

I suppose, if it were me, I would tend to feel that if things were going very well at the moment anyway, then there might not be a need to rock the boat, so to speak, and I'd think about keeping the information safe inside myself until a time came when it would be helpful to share it more widely............then again, maybe I would think about whether it would do any 'harm' to have it written down and could it bring more understanding for your son.

 

So, sorry, I'm sure I've been no help at all!! :P

 

Good luck anyway. >:D<<'>

 

~ Mel ~

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hi sancha! i personally would want it recognised, just so if things crop up in the future you have the proffessional back up if you need it. they shouldn't be able to descriminate against him for it at summer camp etc, and as far as i am aware you dont necessarily have to tell them. it will be up to you who you tell chic!

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yoyo   

Sancha,

I am a prep school teacher and have been a parent in the independent sector also. It sounds like your son is in a caring prep school situation. The small classes undoubtedly help and, I assume, he is still being taught mainly by his form teacher who knows him well. He also seems to enjoy the predictable routine and the rewards for following rules etc. My suggestion is that you make an appointment to see the Head of Special Needs and verbally talk about what you have said here. This will alert his teachers to any possible problems and enable you to put any assistance he may need, as time goes on, in place. In my experience the Special Needs departments of prep schools are second to none in their support of pupils and his teachers will be informed to treat any quirkiness he shows with understanding. If the Summer Camp is run by the school, I would be surprised if they would bar him for his diagnosis unless his behaviour compromised the safety of the group. I hope that he continues to thrive in all areas at his school.

 

Yoyo

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Scout   

Dear Yoyo

Thanks for the comment. I know the indepdent sector is different in that it has different ways of approaching things. My son is indeed in a very caring prep school and also one that is academically very strong and the staff are wonderful to all 3 of our sons. Also, both my husband and I like and agree with the high expectations of behaviour, the very clear consequences should rules not be adhered to and the way children are challenged and praised. It is the way we parent them at home and also achieves the best results. The school is also very hot on teamwork and competition and my sons love to really feel in the thick of things and able to earn priviledges such as extra play, stickers and team points for good work, manners and behaviour. My elder son's form teacher is actually the pre-prep special needs person and also has 2 sons similar to the ages of mine. She did not dismiss what I told her about him at the beginning of term or make me feel as though I was neurotic (which I was worried about) even though he was not exhibiting particularly odd behaviour at school. She has made me feel very confident and has made it very clear that he is going to be fine and anything he needs will be provided as and when needed. When he touches a radiator at school she says he looks at her, smiles and shrugs his shoulder and she gives him a private smile too so both know he's doing it but that it doesn't matter!!! I am going to talk to her this week about what I have been told verbally and I think she will be able to advise me on whether and when it is necessary to have anything written down. My worry is for next year as he moves into the upper school and I know that things are done very differently. There are many teachers other than the form teacher, children have to get themselves from A to B, be much more responsbile for themselves and also he will be the youngest in a department of children up to age 13. I worry about things like bullying because my son loves everyone and assumes everyone loves him back and really cannot understand if people are ever unkind and is not thick skinned. But, then again, there may not be any problems and certainly up to now, he is very happy. He did say he wished he could go to school on Sats and Suns so he could trade cards (with friends in the playground) every day! Do you have any AS children in your school? What help do they get? I can't think my son would ever need any help other than teachers knowing he is a bit eccentric and literal and keeping an extra eye out to make sure he is not bullied/exploited. Academically and sporting-wise, he is very able.

Sorry to write so much!

S

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yoyo   

Sancha,

 

It really does sound as though your son is very well suited to his school. You probably don't need to worry as much about next year as you think. Whilst he may have his foibles, the fact that he is good at sport should help on the acceptance by others front (not that this is how it should be). Also, children in the top of pre-prep at this end of the academic year appear so small that it is difficult to imagine them in the rough and tumble of the main school. They all manage and the matrons tend to supervise changing rooms well and give practical assistance when changing for games. If your son likes being busy I'm sure he'll thrive on it once he gets used to the routine and a few away matches, match teas and the variety of having specialist teachers in subjects will keep his spirits up. We have had some AS pupils over the years; assistance has been tailored to their needs and abilities as no two have been the same. It is simply ensured that all teachers are aware of any problems and that reports from specialists have been read. I do hope you don't encounter any of the problems you anticipate.

 

Yoyo

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Scout   

Dear Yoyo

Out of interest, what sort of assistance did school provide for the AS children? I can't really see what sort of practical help they could have as they are so able and struggle only with intabgible difficulties.

S

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yoyo   

Sancha,

 

The abilities of AS children are extremely varied and some children struggle enormously in as many areas as one may think of - academic difficulties, organisational skills, clumsiness, social problems - to name a few. With smaller classes and high staff ratios, the staff are usually able and willing to meet the child's needs as and when they arise as they get to know the child quite well. It is impossible to describe how children are assisted as each child is different, but I am sure that you will find that the caring ethos that is common in prep schools will come to the fore and will seek to proect your son in every way possible. I'm sure you will understand my reluctance to divulge school policies in an open forum such as this.

 

Yoyo

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florrie   

i had the ADOS test as part of reserach project at icn and came up as definitely coming up as asd and I thought finally some conclusive proof, although doctors still wouldn't accept it as it is not from them, and then i read in a neuroscience magazine that it was not reliable in adults as other cognitive disorders can mask as autism under this test, so i', so confused again. Still one thing seems certain if there are problems showing with the test then there must be something wrong whatever you want to call it

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