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kateg

Son so different at school/when out and about

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My son is 7. He's heading towards the final part of assessment for Aspegers. I'm not a medic but from what I've read, I strongly feel he has aspergers. He's got an ADOS scheduled for Thursday so I'm sure we'll know for sure soon.

 

The one thing that keeps causing me grief is the lack of symptoms being presented at school. I know that shouldn't be a problem but we have so many issues at home where he can't cope with anxiety or the rest of us not living to his self imposed restrictions (we don't know what they are most of the time!) we're all picked at, whinged and and party to some hideous abuse. But at school he's bright, settled and socially fits with in the norms. His teachers say he's a little quirky but nothing else.

 

He's not fine at school - worries about play time (worries about physically losing his friends, who I suspect are starting to struggle with his over friendly then a little bit grumpy behaviour) and going to the loo are causing lack of sleep and lots of stress at home. But he simply won't tell anyone- even with me there, having told the teachers that he's told of us concerns, he goes on to deny it in front of his teacher!

 

He also appears to approach friends in an acceptable way. His eye contact isn't great but he waits his turn to speak at school. We can't get him to do this at home at all though. Why is it he can stick to the rules at school (we have definitely talked about these sorts of rules from when he was tiny with him) but not at home?

 

I'm at a loss really how to cope. I'm quite sure we won't get a diagnosis on this basis that everything seems so fine at school (and when he attends out of school clubs/goes to the childminder etc)

 

Has anyone ever come across this? Any aspies who feel that they bottle it all up in public but can let it out freely at home? I'd love to hear if this may well mean he's not an aspie, despite all the other 'boxes' being ticked.

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Hi there,

 

I am an adult with a late diagnosis of Asperger syndrome and now learning so much about who I am, or maybe I am now in the procees of embracing who I am.

My father once told me I am like a sitting volcano. So yes, I do sit on things, hold back and complain in the privacy of my home. I must say there are times when I do let it out, but that's when I cannot carry it any more. There are times when I feel such anger toward my brother yet I never show or express it.

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My son is 7. He's heading towards the final part of assessment for Aspegers. I'm not a medic but from what I've read, I strongly feel he has aspergers. He's got an ADOS scheduled for Thursday so I'm sure we'll know for sure soon.

 

The one thing that keeps causing me grief is the lack of symptoms being presented at school. I know that shouldn't be a problem but we have so many issues at home where he can't cope with anxiety or the rest of us not living to his self imposed restrictions (we don't know what they are most of the time!) we're all picked at, whinged and and party to some hideous abuse. But at school he's bright, settled and socially fits with in the norms. His teachers say he's a little quirky but nothing else.

 

He's not fine at school - worries about play time (worries about physically losing his friends, who I suspect are starting to struggle with his over friendly then a little bit grumpy behaviour) and going to the loo are causing lack of sleep and lots of stress at home. But he simply won't tell anyone- even with me there, having told the teachers that he's told of us concerns, he goes on to deny it in front of his teacher!

 

He also appears to approach friends in an acceptable way. His eye contact isn't great but he waits his turn to speak at school. We can't get him to do this at home at all though. Why is it he can stick to the rules at school (we have definitely talked about these sorts of rules from when he was tiny with him) but not at home?

 

I'm at a loss really how to cope. I'm quite sure we won't get a diagnosis on this basis that everything seems so fine at school (and when he attends out of school clubs/goes to the childminder etc)

 

Has anyone ever come across this? Any aspies who feel that they bottle it all up in public but can let it out freely at home? I'd love to hear if this may well mean he's not an aspie, despite all the other 'boxes' being ticked.

Hi there,

 

I am an adult with a late diagnosis of Asperger syndrome and now learning so much about who I am, or maybe I am now in the procees of embracing who I am.

My father once told me I am like a sitting volcano. So yes, I do sit on things, hold back and complain in the privacy of my home. I must say there are times when I do let it out, but that's when I cannot carry it any more. There are times when I feel such anger toward my brother yet I never show or express it.

Hi, I can understand how you feel as my 4 children aged from 33 to 12 yrs have traits of autusm youngest son dx with aspergers sept 2012 my youngest has meltdowns but my older childre n have had the same .....we are learning now how to deal with anxious feelings before they get to meltdown stage..........

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thanks for your replies. Lindy how do you work out what the cause of the anxiety is? My son isn't usually able to articulate the issues until some time later (often months later).

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Has anyone ever come across this? Any aspies who feel that they bottle it all up in public but can let it out freely at home? I'd love to hear if this may well mean he's not an aspie, despite all the other 'boxes' being ticked.

 

Hi kateg - what you describe is something that can happen in some children with AS, in that they are able to internalise their anxieties during the day in the relatively structured environment of school, but then the stress all comes tumbling out at the end of the day when the child is tired and in with his/her family. I have read about this but am now racking my brains to think where I saw it ... PM me if you want me to see if I can track it down. Of course, this in itself does not mean that your little boy has AS, but while perhaps a lesser known pattern of behaviour, it is one that has been reported.

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I think that if you printed off your post and took it along with you, the professional would recognise that as being very typical of a child on the spectrum trying to contain themselves and fit in.

 

My son was the same. Lots of anxiety at home, to the point of vomitting in the taxi on the way to school. But trying to keep it all together in school. He eventually became alot worse, refused school, went on to develop OCD behaviour and got a diagnosis of an Anxiety Disorder.

 

School were in total denial - although they later backtracked at Tribunal and said his behaviour was typical of a child struggling to cope.

 

What I would recommend is that you ask for a referal on to Clinical Psychology either from whomever carries out the ADOS assessment, or whoever is leading the MDT that is going to possibly diagnose him.

 

Ask to be referred to professionals that have experience of working with children with autism/aspergers.

 

You need their advice and support, because if his anxieties are not managed and supported he could get worse.

 

Interestingly, after years, my son has now been prescribed a sedative to get him to sleep. We have noticed, almost immediately that the sedative effect has helped with alot of his anxiety at home. But it has now transferred into the school - at least initially. I think this was because he felt relaxed enough under the sedative to actually show some of his behaviour to them.

 

My son is also very worried about behaving badly, saying rude things, getting angry and shouting etc. He would do it at home, but them get totally distraught afterwards at what he had done.

 

This difference in behaviour and school's denying there was any problem was awful. At one stage I told him "why do you keep saying x, y and z at home but in school you tell them everything is okay". I told him "I am trying to tell school that you are worried and nervous, but they don't believe me because you say you are okay."

 

The very next day he had a massive meltdown in school [where normally he could have kept a lid on it until he got home]. He just kept screaming for the teacher to phone his mum to come and take him home.

 

About a month after that he refused school completely. Clinical Psychology and CAHMS had told me to stop forcing him into school and just use 'verbal encouragement'. Well I knew that from that point he would not be in school, and he wasn't.

 

He was out of school for 10 months.

 

We had an Educational Tribunal and we won an independent ASD specific placement for him, along with additonal quantified hours from a dyslexia teacher [because my son also has dyslexia].

 

He is now [since November], going into school every day for half the day. And we are gradually increasing his time in school.

 

At his previous school that 'reintegration programme' involved him being with a teacher in the store room where she could not get him to agree to do any school work and where he often got so upset and anxious that he came home within the hour. He also refused to go out into the playground. At home he was refusing to go out at all. He did not want people to look at him. He really struggled to be in any social environment at all. Things have improved greatly since then.

 

So please take his anxiety seriously. ClinPsych should be able to support him, and you and give you written advice that you can get included in the Statement.

 

You also need them involved because IF he refuses school you can get into trouble unless you have someone who can say it is due to a medical problem ie. anxiety.

 

I have never been happy to use medication. And I always said that I would never give him medicine just so he could cope in an unsuitable school.

 

Now he has moved to the ONLY school that can meet his needs, but his OCD behaviour and anxiety is still very high. So I am now prepared from him to go on medication for an amount of time to see if that helps him get into the routine of his new school.

 

Alot of the anxiety is about transitions ie. leaving the house to go to school. Anxiety about what will happen and what he will have to do. Often he is okay once he gets there. But he has said that it does not matter what I say, or what he thinks, the anxiety happens and he has no control over it. Rather like a panic attack.

 

It is the same with the OCD behaviour and fear of contamination and germs. Logically he knows and understands about germs etc. But with OCD the "thoughts" and "compulsion to wash his hands" does not go away until he has completed the ritual.

 

What are your child's problems with using the loo? Is he also worried about germs?

Edited by Sally44

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thanks for your replies. Lindy how do you work out what the cause of the anxiety is? My son isn't usually able to articulate the issues until some time later (often months later).

Most of the time it is connected to school at the moment he visits a nurture unit for 2 hours a week with his tutor ......he has big anxieties but is ok at home on his pc comfort zone .......i notice he starts to speak about what is bothering him but sometimes its too late by then and whatever i say to reassure him doesnt work ......i have bought a book about aspies and anxieites should arrive today .....

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thanks for your replies. Lindy how do you work out what the cause of the anxiety is? My son isn't usually able to articulate the issues until some time later (often months later).

 

My son is the same. Often things are not processed in 'real time' and they are processed much later.

 

Clinical Psychology also told me that he did not have emotional recognition in himself and therefore could not 'identify' what was upsetting him or 'how' it was upsetting him. All he knew was that the thought of going into school made him feel very very bad and nervous and worried - but he could never say 'what' caused it.

 

Clinical Psychology gave us a book to read through together called "When my worries get too big". In a very simple way it explained how you can 'feel' when you are worried or nervous ie. it talked about headaches, tummy aches and feeling sick. Through using that book it helped him understand that when he was vomitting it was not always because he was ill - often he was just so nervous that it was a automatic reflex action.

 

So 'emotional recognition in himself and others' was included in his Statement as a need in part 2 and the speech therapist works on that as part of her programme which is detailed in part 3.

 

I am waiting to get some session dates from Clinical Psychology because the Psychiatrist and the Developmental Paediatrician have said that along with medication, they want ClinPsych to do some sessions with my son and I together to see if we can find ways to identify anxious feelings and use techniques to help him relax during those times.

 

Also, if your son is not processing things in real time, you may also need to think about all his senses because he may have Sensory Processing Disorder.

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Hi

 

This isn't unusual. For a long time my son's behaviour was much worse at home than in school. Admittedly, his behaviour/characteristics in school were noted as not being quite what one would expect. Nevertheless, I did feel for a long time that I was constantly battling to get the school to be forthright to healthcare professionals about how kiddo was presenting. Now that's he's 10, it really is very obvious! I'm a great believer in saying that 'time will tell' - because it will!

 

What tends to happen (as widely documented by psychiatrists, etc) is that a child can hold it together whilst in a certain environment e.g. school because it tends to be much more structed than at home, for example (e.g. bell rings, kids line up and go into class, etc). There's also an element of doing what the other kids do. Often what happens is that kids will vent once at home the stresses of the day.

 

Although it's helpful to have background reports etc from school backing things up, parents should views should not be dismissed and the specialist/s concerned should know that kids can present differently in different settings.

 

Best wishes.

 

Caroline.

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My son is 11. He has a fear of being told off by authority figures,ie teachers. So he does try to obey the rules at school even though he often breaks down when he gets home. Perhaps his anxieties are coloring his behaviour at school?

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Thank you all so much, you've really reassured me that I'm doing the right thing in fighting his corner. I know his behaviour isn't normal and his anxiety level can not go on at this level (I know it wont', I know it will get worse as he hits puberty). I've been told so many times that he's 'just quirky' or had that patronising 'yes dear' kind of smile from friends and family that I keep doubting my gut feeling. You've given me enough gusto to at least get as far as the ados on thursday. I may well be back in tears on Thursday night though, asking what to do now they've said he's NT!

 

I've been on a course today (TEACCH) and i'm exhausted. I'll re-read your responses tomorrow and may well post more questions. Thanks again x

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I think that if you printed off your post and took it along with you, the professional would recognise that as being very typical of a child on the spectrum trying to contain themselves and fit in.

 

My son was the same. Lots of anxiety at home, to the point of vomitting in the taxi on the way to school. But trying to keep it all together in school. He eventually became alot worse, refused school, went on to develop OCD behaviour and got a diagnosis of an Anxiety Disorder.

 

School were in total denial - although they later backtracked at Tribunal and said his behaviour was typical of a child struggling to cope.

 

What I would recommend is that you ask for a referal on to Clinical Psychology either from whomever carries out the ADOS assessment, or whoever is leading the MDT that is going to possibly diagnose him.

 

Ask to be referred to professionals that have experience of working with children with autism/aspergers.

 

You need their advice and support, because if his anxieties are not managed and supported he could get worse.

 

Interestingly, after years, my son has now been prescribed a sedative to get him to sleep. We have noticed, almost immediately that the sedative effect has helped with alot of his anxiety at home. But it has now transferred into the school - at least initially. I think this was because he felt relaxed enough under the sedative to actually show some of his behaviour to them.

 

My son is also very worried about behaving badly, saying rude things, getting angry and shouting etc. He would do it at home, but them get totally distraught afterwards at what he had done.

 

This difference in behaviour and school's denying there was any problem was awful. At one stage I told him "why do you keep saying x, y and z at home but in school you tell them everything is okay". I told him "I am trying to tell school that you are worried and nervous, but they don't believe me because you say you are okay."

 

The very next day he had a massive meltdown in school [where normally he could have kept a lid on it until he got home]. He just kept screaming for the teacher to phone his mum to come and take him home.

 

About a month after that he refused school completely. Clinical Psychology and CAHMS had told me to stop forcing him into school and just use 'verbal encouragement'. Well I knew that from that point he would not be in school, and he wasn't.

 

He was out of school for 10 months.

 

We had an Educational Tribunal and we won an independent ASD specific placement for him, along with additonal quantified hours from a dyslexia teacher [because my son also has dyslexia].

 

He is now [since November], going into school every day for half the day. And we are gradually increasing his time in school.

 

At his previous school that 'reintegration programme' involved him being with a teacher in the store room where she could not get him to agree to do any school work and where he often got so upset and anxious that he came home within the hour. He also refused to go out into the playground. At home he was refusing to go out at all. He did not want people to look at him. He really struggled to be in any social environment at all. Things have improved greatly since then.

 

So please take his anxiety seriously. ClinPsych should be able to support him, and you and give you written advice that you can get included in the Statement.

 

You also need them involved because IF he refuses school you can get into trouble unless you have someone who can say it is due to a medical problem ie. anxiety.

 

I have never been happy to use medication. And I always said that I would never give him medicine just so he could cope in an unsuitable school.

 

Now he has moved to the ONLY school that can meet his needs, but his OCD behaviour and anxiety is still very high. So I am now prepared from him to go on medication for an amount of time to see if that helps him get into the routine of his new school.

 

Alot of the anxiety is about transitions ie. leaving the house to go to school. Anxiety about what will happen and what he will have to do. Often he is okay once he gets there. But he has said that it does not matter what I say, or what he thinks, the anxiety happens and he has no control over it. Rather like a panic attack.

 

It is the same with the OCD behaviour and fear of contamination and germs. Logically he knows and understands about germs etc. But with OCD the "thoughts" and "compulsion to wash his hands" does not go away until he has completed the ritual.

 

What are your child's problems with using the loo? Is he also worried about germs?

 

Wow, you've gone through so much. Your son is very lucky to have you x

 

I'm really not sure about the loo thing. I *think* it might be the hustle and bustle. He says that he worries even when he's alone (perhaps worrying that the hustle and bustle is imminent) but he has clarified that no one is being unkind and he doesn't feel threatened by the big kids. It could be germs- I had emetophobia for a good few years and while I tried to hide it as best I could, it's not easy with 2 small children picking up bugs. He's not worried about handwashing at home though and still wets himself here fairly regularly (he always just wets his pants as he's taking them down, so probably a case of not getting to the loo on time rather than full on wetting himself).

 

We love him (and his sister!) so dearly, we just want him to be happy.

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I get the same with my son - it's like his comfort zone is school and his family are the other children and we only get problems at school if they do something different (i.e. school play). He does have most of his meltdowns during his activities though as well as home (swimming, kick boxing and football). We take him swimming because I cannot swim and remember how embarrasing it is when older to admit this (and he has always loved water/swimming) so he started this from 6 mths old; we started taking him kick boxing when he was being bullied at school and we had tears every night saying he didn't want to sleep because that meant school in the morning so we wanted to build his confidence (4 yrs old) and he started kicking a ball the minute he could walk so it was ineviable he would want to do this and this is not just his passion now - it has become his obsession (never watches cartoons, only football channels) - his obsession used to be cars when he was little.

 

I too get the same from school (i.e. no problem with him, he's quiet but polite, has friends and will share etc etc) but he has never asked for anyone to come home after school (apart from 3 people who are in his class who he has known from about 6 month old - more like cousins than friends really). I too get told things a few months after the event! I didn't realise this was linked to ASD so that's interesting for me as I now understand why he doesn't tell me things and I also didn't realise ASD means lack of real time - he really struggles with next week, month, year yet he knows he days of the week and months of the year!

 

It seems there are lots of us in the same situation here and it's nice to share things so you know what things are normal for an Aspie (if that makes sense). I hope things get better for you soon. :)

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I just wanted to update- we're just back from the ADOS and have a confirmed diagnosis of Autism. We agreed to avoid an Aspergers diagnosis to avoid problems with self identity if/when the term aspergers becomes obsolete.

 

We're so relieved. Happy that this will not entitle us to attend support groups with out the worry that we're wrong about our son. I feel vindicated, I was right. I fought for him and I was right to do so.

 

Thank you for your support, it is greatly appreciated.

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That's fantastic news that you've got a diagnosis - just goes to show that your 'gut' instinct is sometimes right.

 

You can finally start moving forward now.

 

Best of luck :)

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