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bonbons

what is aspergers, and what is simply bad behaviour???

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Hi, I am new to the forum and very glad to have found it! My daughter is now 14 and has recently been diagnosed with aspergers traits rather than classic aspergers syndrome. At age 6 or 7, I have a very vivid memory of her telling me that she felt 'different', and as though she didn't 'fit in anywhere'.I never forgot that! she was a happy,lively child throughout primary school but raised cocerns amongst her teachers as she struggled to make friends...something she couldn't understand as she wanted them so much! It was often mentioned to me that it was 'Daisy's way or no way'!! She didn't play games well, unless they were her own, was very extreme,noisy, and over the top, which made other kids wary of her, clung ( sometimes literally) to her teachers, and despite her reading and vocabulary being advanced for her age, began to fail towards the end of primary school as writing was such a challenge for her and she couldn't get her ideas down on paper or keep up with the rest of the class. She left to go to high school with a reputation as being a bit odd and her experiences there have been less than positive ever since.She was bullied frequently and by the time she entered year 8,she had begun to display some very angry, aggressive behaviour, first at home, then at school, then both, resulting in much stress for the family and many exclusions from school! I instinctively felt that there was more to this than met the eye,yet, despite my discussions with many teachers, 3 different g.p's,and a student social worker at 'camhs'to whom she was assigned following her attempts at self harming, it was felt that she simply had behavioral problems and that firmer boundaries were neeeded. I'd mentioned the obsessions that were such a feature of her personality, but nobody really took it on board. A chance conversation with a student psychiatric nurse who happened to be specialising in AS, put us on the right path, and she underwent various assessments ( still waiting for ados test).Her diagnosis, and all that I have come to understand about it, is a such a relief for her as well as us! she could never understand herself before....why she can't look ahead and predict the consequences, why she became so stressed in certain social situations, why she shakes her leg or rocks herself when she's trying to cope,why she doesn't cry or show empathy etc.

She is in the process of being statemented so that her school can provide additional support for her, and they have made some adjustments to her timetable for when she returns in September, however, we can't help but feel anxious about how things will go. I am reading as much as I can about AS and am able to recognise which aspects affect her, and which do not...and searching for all the support and advice I can ( like this forum!!). My problem is that, because we had been told it was behavioural all this time, and because she has aspergers traits, We sometimes question when, for intance,, she is snappy and rude in answer to a simple question, is it AS, Or just bad behaviour? I understand that small things are big things to her and that she loses her temper easily at what seems such a trivial thing, however. there are times when I think we are trying to do something nice,yet she seems quite rude and ungrateful? AS or not? My husband, who has so far read nothing,leans more towards the behavioural theory despite the diagnosis, whereas he says I excuse everything she does and blame it on AS? I am confused, and it is causing a rift between us at a time when we should be pulling together!! incidentally, I certainly find that a calmer,focused approach to her episodes has a much more favourable outcome than my husbands more confrontational one!

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Hi bonbons and Welcome to the Forum. :)

 

 

It sounds as though it has been a long time reaching this stage for your daughter,yourself and your family.

 

I think there are probably many answers to the question ''what is asperger's and what is simply bad behaviour'' .

I have Ben who is 12 and was diagnosed with AS just over a year ago after much debate.Even after being on the Forum for several years,support from CAMHS and attendance at various groups I still find it difficult to decide what is anxiety related due to AS and what is a bit of an attitude problem.

What is more my husband and myself do not always agree.

Certainly opinions on the Forum differ a great deal when this type of question is raised.

 

It is even more complicated for you.As your daughter has never had any support or input regarding possible AS she might well have learned strategies to cope with AS type difficulties that impact her behaviour.

What is more the way that you as parents responded to the difficulties your daughter had would also probably have influenced what happened next.

 

So as a very general example a child might have AS and so became anxious about a noisy busy place [AS related],

The child responded by cry and shouting [bad behaviour but AS related].

The parent then responded by taking the child away to a nice environment with sweets to stop the noise.[Parenting].

The child then learned that next time they were in a busy place and anxious then to cry and shout was an appropriate response.

 

I am sorry that that does not answer your question very well at all.

 

One thing that does worry me is that your daughter currently is described as having AS traits.

I should warn you that this is not a diagnosis and NAS who are one of the main organisations in this field recognise that the term is ambiguous and unhelpful.

AS traits is a description of the behaviours but it is not a diagnosis.Ben was described as having AS traits but it was thought by some professionals that they had nothing to do with AS at all. :rolleyes:

 

It concerns me that your daughter does not have a clear AS diagnosis because many LA's require a diagnosis on the ASD spectrum before they will provide any SEN input in school specifically related to ASD.

 

I do not know what assessments your daughter has been through so far.However I think it would be worth pushing for a thorough multi-disciplinary assessment for ASD raher than accepting the term AS traits as it stands.

 

Karen.

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thankyou karen. Your information was very helpful. my daughter spent 2 months at a young persons psychiatric unit following a self harm incident in school and an unwillingness on her part, to be sure that she could not keep herself safe.It was this admittance that brought to light the possibility of AS, and many questionnaires were completed, and observations made of the way she interacted both socially and educationally,at the end of which, the paediatric psychiatrist arrived at the conclusion that she was definitely on the autistic spectrum, and that it was probably aspergers, although, not " barn door", as she put it!? A psychometric test was completed at the beginning of august but we don't yet know the findings, and she is still on the list for the 'ados 'test.

In light of what you told me, I telephoned my LA to highlight my concerns, and was told that they still haven't had a submission from the school and this was probably due to them wanting the results of these tests and all other findings made at the ypc who assessed her to include with this submission, but that this wasn't absolutely necessary as long as the information provided gives a clear picture of her needs. Having said this, it seems likely that the school will apply for 'class funding'rather than a 'sen', and I do remember this being mentioned. Does this make sense to you?

I am assuming that at some point in the future, Daisy will have a more concrete diagnosis once evrything has been completed, and from what we have been told,the results are expected to support their initial thinking however, she isn't 'classic aspergers', and I see that. She doesn't care too much about routine and she has no problem making eye contact for example, but the traits which do affect her do so dramatically and on a daily basis!! Surely ,this admittedly,ambiguous diagnosis, can't mean that her needs will be taken less seriously!?

Sorry if I sound like I'm having a bit of a rant!!...well, I am actually!! It sounds like you also have faced many of the same frustrations!! Just hoping that the next, and most crutial 2 years ,will be happier and more productive for her than the last 2 years!

 

thanks again. Take care.

Beverley, Cheshire. :wacko:

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thankyou karen. Your information was very helpful. my daughter spent 2 months at a young persons psychiatric unit following a self harm incident in school and an unwillingness on her part, to be sure that she could not keep herself safe.It was this admittance that brought to light the possibility of AS, and many questionnaires were completed, and observations made of the way she interacted both socially and educationally,at the end of which, the paediatric psychiatrist arrived at the conclusion that she was definitely on the autistic spectrum, and that it was probably aspergers, although, not " barn door", as she put it!? A psychometric test was completed at the beginning of august but we don't yet know the findings, and she is still on the list for the 'ados 'test.

In light of what you told me, I telephoned my LA to highlight my concerns, and was told that they still haven't had a submission from the school and this was probably due to them wanting the results of these tests and all other findings made at the ypc who assessed her to include with this submission, but that this wasn't absolutely necessary as long as the information provided gives a clear picture of her needs. Having said this, it seems likely that the school will apply for 'class funding'rather than a 'sen', and I do remember this being mentioned. Does this make sense to you?

I am assuming that at some point in the future, Daisy will have a more concrete diagnosis once evrything has been completed, and from what we have been told,the results are expected to support their initial thinking however, she isn't 'classic aspergers', and I see that. She doesn't care too much about routine and she has no problem making eye contact for example, but the traits which do affect her do so dramatically and on a daily basis!! Surely ,this admittedly,ambiguous diagnosis, can't mean that her needs will be taken less seriously!?

Sorry if I sound like I'm having a bit of a rant!!...well, I am actually!! It sounds like you also have faced many of the same frustrations!! Just hoping that the next, and most crutial 2 years ,will be happier and more productive for her than the last 2 years!

 

thanks again. Take care.

Beverley, Cheshire. :wacko:

 

Hi again. :)

I can fully understand why you need to have a rant.It is a very stressful time and it sounds like lots of new information.

 

I think it is worth pushing for the ADOS.If your daughter does not have enough AS features in the various relevant categories then she may not obtain an AS diagnosis.However if she does meet the diagnostic criteria she would not have to be as you might expect in every area.Although some LAs do offer support for pupils with Social Communication Difficulties without a clear diagnosis this is not always the case.

 

I am not certain what class funding is.

Within the COP for SEN [the document that is the legal framework for pupils with SEN] there are various levels of intervention.Support provided at School Action and School Action Plus is provided by the school with money delegated by the LA.This sounds like 'class funding'.

It is very common now for schools to have to show that they have done everything possible at School Action Plus before the LA will agree to a Statutory Assessment.A Statutory Assessment may lead to a Statement of SEN.

The main difficulty with provision at SA Plus is that the provision can end up going to the class with no guarantee that it will reach your child.However you may need to go through a period of time at SA Plus whilst attempting to build up a case for a Statutory Assessment.

NAS provide some excellent information.I will post some links that provide more detail.

 

The only other thing that comes to my mind is.If your daughter has been ill enough to need to remain as in patient in a CAMHS or other young people's psychiatric unit for two months it is also worth ensuring that her mental health needs are documented.

SEN provision does include support for Mental Health Needs.So any support put in place should include provision for these.

If you obtained some provision regarding AS but the provision does not include provision regarding your daughters mental health needs then you may end up in a worse situation than if her mental health needs were recognised.

 

I hope that makes sense.

At the very least if the self-harm incident was sufficiently serious for your daughter to remain as in patient for two months then a plan should be in place to ensure her safety on return to school.

Karen.

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