diagnosis/school

[mrs fussy]

Hi my son is soon probably to get a diagnosis of AS, i am now quite worried about this,should we get him labeled or not. His problems have been at school in the las 6 mnths, previuous to this no MAJOR concerns other than he doesnt really keep freinds too well and has a short fuse. What are the pros and cons to getting a diagnosis? especially regards school.Thanks Mrs F x

[madme]

Hi. i can understand your perspective, to seek diagnosis or not is a question when your child doesnt have too many issues at this particular stage. For my son we had no choice as it was necessary as he has complex difficulties including the AS. For my DD(6) also gifted we were not sure but we sought a dx on the basis that we could seek help as and when necessary. Dd is quite different- not unlike me. At present she sort of copes with some understanding. Outreach is involved but in reality not really listened to. I know now that I too am AS and wish that school had been less stressful. I am a professional and can cope ( sort of) but do not want Dd to experience some of the difficulties that I have experienced. In my field there is little acceptance and therefore if I were to say Im AS Im sure that it wouldnt help. As DD is so bright and could IMO aspire to much greater heights I do wonder if the dx will hinder. At the moment I feel that she has the right to be understood - as perhaps I wasn't.

[lisaalfrob]

Hi,

It is best to get a diagnosis especially before secondary school otherwise your child will suffer.They will be branded

as lazy,naughty,disrespectful and rude and end up being sent out of lessons and excluded for things they cannot understand why.The label if we can call it that means people will sit up (well we hope they do) and give a bit of leeway due to their difficulties.Without this the child will suffer and inevitably get worse.

I speak from experience.My son is 13 and only just been diagnosed with asd.

I would be interested to hear others views on this as i would like to one day write a book called IGNORANCE.There is soooooooo much ignorance out there with people it is quite unbelievable and i feel so much for the children whose parents dont care like we do as they slip through the net and end up with no help and no education.We should pull together and make sure the government does something.

There are too many children nowadays falling in between the mainstream and the special needs school border.There should be an inbetween and a law that teachers should cater for ALL needs.

Had my ramble so look forward to your views

 

lisa xxx

Edited June 28, 2007 by lisaalfrob

[krystaltps]

I can understand this situation too - I was there 2-3 years ago, in fact the question had been rearing its head since nursery. I originally adopted the "my son's absolutely fine thank-you very much" attitude way back when he was 4 and ended up removing him from nursery. Unfortunately for C, I deliberated and held off too long, and he ended up with the alternative label: the disruptive kid, the one who was demonised and got the blame for everything. I could kick myself now, and looking back with hindsight, I should have addressed the situation 4 years ago. I guess I had to come to terms with it first. It took my younger son being dx with epilepsy for me to realise that a dx wasn't the big evil thing I thought it was, that the world didn't end, and that your child would get the help they need.

I suppose it all depends on how well your child is coping, and the risk of them receiving an alternative unofficial label (which is much worse, and ruins their self-esteem).

[lisaalfrob]

The problem is these poor kids cant cope when teachers etc are not understanding their needs.As they progress into secondary school with work getting harder,their hormones all over the place they have to have understanding from the school otherwise they end up excluded time after time,sent to behavioural schools which are definitely not for asd children and all the time wondering what have they done wrong.

 

lisa xxxx

[mrs fussy]

Hi. i can understand your perspective, to seek diagnosis or not is a question when your child doesnt have too many issues at this particular stage. For my son we had no choice as it was necessary as he has complex difficulties including the AS. For my DD(6) also gifted we were not sure but we sought a dx on the basis that we could seek help as and when necessary. Dd is quite different- not unlike me. At present she sort of copes with some understanding. Outreach is involved but in reality not really listened to. I know now that I too am AS and wish that school had been less stressful. I am a professional and can cope ( sort of) but do not want Dd to experience some of the difficulties that I have experienced. In my field there is little acceptance and therefore if I were to say Im AS Im sure that it wouldnt help. As DD is so bright and could IMO aspire to much greater heights I do wonder if the dx will hinder. At the moment I feel that she has the right to be understood - as perhaps I wasn't.

Hi thx for your replys everyone,madme my son is the same he is also gifted working 3-4 yrs ahead of his peers in some subjects, but also has the bad kid name at school especially amongst a couple of parents who have complained about him and which then ended in exclusion, the head teacher is the other big problem who insists he 'tow the line' regardless.I have had though a lot of support from other parents who really know my son and how lovely he is, my son is absoloutly no differant to any other child at home and i just wonder if they have exaggerated his problems,as he is in year 3 now and had no big problems before, do you think a dx helps with the education system or not though folks?has it opened up any doors so to speak. Mrs F x

[lisaalfrob]

Hi thx for your replys everyone,madme my son is the same he is also gifted working 3-4 yrs ahead of his peers in some subjects, but also has the bad kid name at school especially amongst a couple of parents who have complained about him and which then ended in exclusion, the head teacher is the other big problem who insists he 'tow the line' regardless.I have had though a lot of support from other parents who really know my son and how lovely he is, my son is absoloutly no differant to any other child at home and i just wonder if they have exaggerated his problems,as he is in year 3 now and had no big problems before, do you think a dx helps with the education system or not though folks?has it opened up any doors so to speak. Mrs F x

Yes thats what i am trying to say because the staff will look at the child in a different way and deal with things as appropriate.If they get treated as the norm they will end up with no schooling because of being constantly excluded.

 

lisa xxx

[Kathryn]

Hi mrs fussy

 

Here's part of my response in a recent thread on a similar subject. It sums up how I feel.

 

Casting my mind back 13 years as my daughter is now 18, as a 5 year old she was a happy, slightly quirky individual with one or two strange responses to certain challenging situations, but nothing which caused great problems at school or home. Nobody ever mentioned ASD and it never crossed our minds, so the decision to label or not never arose for us - we didn't know there even was a label for our "unique" child.

 

Would we have sought a diagnosis if the possibility of ASD had occurred to us? With hindsight, yes, given all the problems we have had getting help since. The supportive small school environment that she was in back then helped to minimise her problems and we had no idea how much she would struggle when she was 7 and 11 and 15 and school became a much more challenging place to be.

 

Children get categorised and labelled anyway as they move through life, like it or not, and many of the labels are born of ignorance and prejudice and downright cruelty. If my daughter had had the AS label earlier, perhaps the unofficial labels of "lazy", "freak", "retard", "spaz" might not have done so much damage to her self esteem.

 

K x

[mrs fussy]

Hi mrs fussy

 

Here's part of my response in a recent thread on a similar subject. It sums up how I feel.

 

Casting my mind back 13 years as my daughter is now 18, as a 5 year old she was a happy, slightly quirky individual with one or two strange responses to certain challenging situations, but nothing which caused great problems at school or home. Nobody ever mentioned ASD and it never crossed our minds, so the decision to label or not never arose for us - we didn't know there even was a label for our "unique" child.

 

Would we have sought a diagnosis if the possibility of ASD had occurred to us? With hindsight, yes, given all the problems we have had getting help since. The supportive small school environment that she was in back then helped to minimise her problems and we had no idea how much she would struggle when she was 7 and 11 and 15 and school became a much more challenging place to be.

 

Children get categorised and labelled anyway as they move through life, like it or not, and many of the labels are born of ignorance and prejudice and downright cruelty. If my daughter had had the AS label earlier, perhaps the unofficial labels of "lazy", "freak", "retard", "spaz" might not have done so much damage to her self esteem.

 

K x

Hi yes this really does describe my son, and im not too worried about the lable just unsure if he warrents it but your description is kinda how i feel about my son, as it was school who first suggested aspergers, is the decision tol abel by proffesionals ie CAMHS taken lightly or is it very thorough, oh im just so confused first i thoght he was aspergers now its coming towards diagnosis im questioning it is this usual? or am i just in denial. Mrs F x

[Kathryn]

Hi Mrs Fussy,

 

Not surprising if your thoughts and feelings are in a bit of a turmoil at a time like this.

 

Going by the experiences of people here, and those I know in real life, the decision to give a firm diagnosis isn't given quickly or casually. Often it seems, rather than "overdiagnosing" the professionals are cautious and won't actually name ASD which is frustrating to parents waiting for a definite diagnosis they can go back to the school with.

 

Your son is still the same little boy and the diagnosis, assuming he gets it, won't change him, but it might just change the amount of help he gets, now, or later when he might need it more.

 

K x

[mrs fussy]

Hi Mrs Fussy,

 

Not surprising if your thoughts and feelings are in a bit of a turmoil at a time like this.

 

Going by the experiences of people here, and those I know in real life, the decision to give a firm diagnosis isn't given quickly or casually. Often it seems, rather than "overdiagnosing" the professionals are cautious and won't actually name ASD which is frustrating to parents waiting for a definite diagnosis they can go back to the school with.

 

Your son is still the same little boy and the diagnosis, assuming he gets it, won't change him, but it might just change the amount of help he gets, now, or later when he might need it more.

 

K x

Yes thx for that, its apreciated Mrs F x

[llisa32]

Hiya, I'm currently in a simialar situation, but like Kathryn my son at school just shows a couple of 'quirky' behaviours and school 'ignore' those and just support him, and I guess treat him like any other...although I have started to notice in this last week only that they are paying close attention to what he's doing at breaktime etc, and how much expression he's using when reading etc etc.

 

I was worried about him having what some see as a 'label' because the impression I got from the school is that they most

definately don't like them. However...when I saw the child psychiatrist on Tuesday she was quite clear that they will not hand out 'labels' lightly, and no matter what he is diagnosed with the bottom line is it will identify a bit more clearly what J needs additional help/support with...even if at the moment he's managing to get by because of the environment he's in. I have no doubts in my mind had I left him at the first school he started in the teachers would have been calling me non-stop because he was being really noisy and a little disruptive - basically the environment was really noisy and busy etc and he just couldn't cope. We've been really lucky now in that he's in a small class, and overall the school is small, heavy emphasis on respect for each other, calm etc etc and it's really helped with his overall confidence which took a battering after 8 weeks at 1st big school. But...I'm very concious that his resistance to change, and difficulty with social situations and relating to his peers, and in stuff with comprehension etc may well get a lot worse as he makes the transition to year 3.

 

So I have decided that if some people (ie school) want to see a disgnosis as a label thats up to them...I will put it to them as a 'need' or being able to fill in a gap for support etc.

[Karen A]

Hi my son is soon probably to get a diagnosis of AS, i am now quite worried about this,should we get him labeled or not. His problems have been at school in the las 6 mnths, previuous to this no MAJOR concerns other than he doesnt really keep freinds too well and has a short fuse. What are the pros and cons to getting a diagnosis? especially regards school.Thanks Mrs F x

 

 

Hi I know it is a difficult decision.We started on the road to a possible Dx over a year ago.Ben has a Dx of DCD and Social Communication Difficulties.

However the debate amongst the proffesionals regarding AS Dx continues.

I think it worth adding that obtaining a Dx will not necessarily change the views of the school.Others who post here have a Dx and a Statement but it has not prevented the school sticking to rigid views and continuing to treat the child as though they are badly behaved.

Sorry if that sounds negative.I would not want you to hope that a Dx will autamatically change the school.In my experience it has been a year of slow hard work.

If the school do not undersand AS then an AS label is just another label.Karen.

[di30]

Hi everyone.

 

My son age 12, attends year 7 of a mainstream secondary school, and even though he hasn't a statement he is under 'school action plus' and also under IEP's, he has done ever since starting reception, though when he was 4 he was on the 'special needs register', when we moved they didn't add him onto the special need register but just with the other mentioned option.

 

Also when he was 4 the school were concerned of him being different to other peers, he would not bother with anyone, leave on his coat from start to finish and stand in the opposite corner to everyone else as much as they tried to involve him.

The school referred him to a Child pyshc, who had said he was just being immature and that he would grow out of it and never seen him again.

 

Some time had gone by, we moved as mentioned above, then even starting the new school nothing changed, but i didn't know about how to get help and support then.

I also have an older son (18 yrs old now), and I know that no 2 children are the same but my instincts told me this wasn't right with my younger son, but the school didn't want to know and just fobbed me off by saying he will grow out of it etc etc.

 

Anyway, towards the last year of the junior school, I had had enough, knowing it wouldn't be long before he will be attending the secondary school and things cannot go the way they are, he didn't seem to be growing out of it and got noticably worse.

I had spoken to someone who had advised me of what to do and what direction to take, so its been all go with assessments for over a year now.

The CP said it is Aspergers and he has very high anxiety levels, but she then referred him to CAMHS to sort out an official dx.

 

The secondary school have been pretty good really, well I would say better and probably more understanding than the junior school, but have said they will still help to support my son, but would like the official diagnosis in order to know what further help and support he may require.

 

Really it should not make any difference regarding an official dx, if that child still requires help then they should be receiving it, but on the other hand perhaps an official dx they will look into this further to see what support is needed etc.

 

I do feel though that as ASD is very common in mainstream schools these days, there should be courses, I don't think many teachers know how to deal with it.

 

I have had some great links sent to me from the NAS (national autistic society) which are for schools, such as eg: lessons with ASD, what they may expect behavioral wise from students with ASD, and how the staff should go about it and much much more, so as it was an attachment I decided to email it to the school, I will also print them off to be sure they receive them, that way they cannot say they haven't received anything.

I had emailed the NAS last week and asked them, 'do they think it may be a good idea for me to send some information to the school regarding ASD (aspergers etc), they emailed me back 2 days ago and said they thought it was a great idea, thats when they sent me the links/attachments.

 

(please PM me if anyone is interested in these attachments then I will get back to you asap).

 

I am useless on the computer when it comes to sending attachments - but can arrange something by PM lol.

Hope everything works out soon.

 

Good luck.

Di x

[cmuir]

Hi

 

Without a doubt, I think that it's imperative to get a diagnosis.

 

My son is 5, has AS and is in mainstream school with 1-2-1 full-time support. I have no doubt that his diagnosis has added amunition which has helped me get the support he needs in class. After holidays, he'll be in P2 and I've been assured he'll continue to get 1-2-1 full-time support. It wasn't easy getting support, I attended numerous meetings, wrote numerous letters, etc - it was hard work. That was even after reports and liaising with nursery manager to back me up. Fact is, I'm not convinced my son would have got the same level of support if he hadn't had a diagnosis.

 

In addition, I remember sitting in consultant's office just being told that he had AS. In between tears, I asked what happens now. I was surprised at how many doors were opened.

 

You hope in this day and age that if your son struggles at school, the school will automatically give support. Because of funding (schools are allocated funding on a yearly basis), it's given as a pot of money rather than funding for support for X, Y and Z kids). That's why kids can and do miss out.

 

My answer has to be a yes, go for a diagnosis. It can only help your child. If he doesn't need support that's fantastic, but if he does ...

 

Caroline.

[di30]

Hi

 

Without a doubt, I think that it's imperative to get a diagnosis.

 

My son is 5, has AS and is in mainstream school with 1-2-1 full-time support. I have no doubt that his diagnosis has added amunition which has helped me get the support he needs in class. After holidays, he'll be in P2 and I've been assured he'll continue to get 1-2-1 full-time support. It wasn't easy getting support, I attended numerous meetings, wrote numerous letters, etc - it was hard work. That was even after reports and liaising with nursery manager to back me up. Fact is, I'm not convinced my son would have got the same level of support if he hadn't had a diagnosis.

 

In addition, I remember sitting in consultant's office just being told that he had AS. In between tears, I asked what happens now. I was surprised at how many doors were opened.

 

You hope in this day and age that if your son struggles at school, the school will automatically give support. Because of funding (schools are allocated funding on a yearly basis), it's given as a pot of money rather than funding for support for X, Y and Z kids). That's why kids can and do miss out.

 

My answer has to be a yes, go for a diagnosis. It can only help your child. If he doesn't need support that's fantastic, but if he does ...

 

Caroline.

 

Hi Caroline,

Hope all is well.

 

Yes I am hoping too they will give Dan his official diagnosis very soon, okay the school all break up soon for the hols, but it will be great if the specialist Dan is under now can deal with this all in good time in readiness for year 8.

The way I see it as he will be a teenage next birthday its very essential to do this.

 

When we spoke to his Camhs Dr a fortnight ago, we did tell him that we believe an official dx is needed asap in order for the school to know what support Dan needs.

He said he has it all in front of him in writing on one of the records and assessments that have been made for Daniel, the doctor said dx or not he should still be having extra help and support and seemed rather annoyed of the school noting this down, so hopefully this won't be dragged out as he has already been under the other CP for a year and the next appointment is on the 12th July with the Camhs doctor.

We did fill in a questionaire regarding 'behaviour and social communication' of 40 questions of where we had to tick yes or no, he sent us away with this, so this was done and sent back to him immediately.

 

We did also do some sort of questionaire when he was under the CP but that one was regarding ASD traits etc, where obviously the camhs doctor had all the information in front of him.

 

I will keep you posted, and I do think a diagnosis will resolve this when it comes to the schools as they know they cannot overlook this.

 

Cheers

Di xx

[Lindyloo]

I would have to say that I agree with thediagnosis route. Without a diagnosis you have to rely on the unofficial support from understanding teachers. We have been very lucky with Luke's Y2 teacher in that she obviously has experience of ASD's and has been willing to go out of her way to help, support and understand Luke's problems. His previous years teacher was exactly the opposite and spenyt the whole year with blinkers on.

 

I do not think getting a diagnosis will instantly solve all your education problems, but it does give you something concreate to use in school to try and get additional help and support if the need arises. If it is not needed all well and good, but if it is having something oficial will certainly help.

 

Linda

[mrs fussy]

Hi Caroline,

Hope all is well.

 

Yes I am hoping too they will give Dan his official diagnosis very soon, okay the school all break up soon for the hols, but it will be great if the specialist Dan is under now can deal with this all in good time in readiness for year 8.

The way I see it as he will be a teenage next birthday its very essential to do this.

 

When we spoke to his Camhs Dr a fortnight ago, we did tell him that we believe an official dx is needed asap in order for the school to know what support Dan needs.

He said he has it all in front of him in writing on one of the records and assessments that have been made for Daniel, the doctor said dx or not he should still be having extra help and support and seemed rather annoyed of the school noting this down, so hopefully this won't be dragged out as he has already been under the other CP for a year and the next appointment is on the 12th July with the Camhs doctor.

We did fill in a questionaire regarding 'behaviour and social communication' of 40 questions of where we had to tick yes or no, he sent us away with this, so this was done and sent back to him immediately.

 

We did also do some sort of questionaire when he was under the CP but that one was regarding ASD traits etc, where obviously the camhs doctor had all the information in front of him.

 

I will keep you posted, and I do think a diagnosis will resolve this when it comes to the schools as they know they cannot overlook this.

 

Cheers

Di xx

Yes i can see that a diagnosis is probably the best its just that my sons problems only appear at school he has no real problems other than this(now in year 3) and had no real problems before this, the teacher suggested aspergers to me, i feel that they often exaggerate his problems, and a lot of the information passed onto CAMHS was by the ed psych and this was information given to her by the school,she said they have put him as priorty which obviously im pleased about but also concerned as they said only children that self harm are priorty(my son does NOT).She (ed psych )also said it will be a straight forward diagnosis, and i cant see this as he only shows a few traits nothing major, it just seems the school want a diagnosis for some reason, i am worried it is to cover there own failings, ie they havent really provided him with the kind of work matched to ability, he is gifted too you see could they be covering there tracks is is behaviour bad because he bored???im just not sure.What happens at first appointment with CAMHS surely they dont give a diagnosis at first appt, they will listen to waht i have to say wont they and do i have a right to read everything that has been written about him. Mrs F x

Edited June 29, 2007 by mrs fussy

[cmuir]

i cant see this as he only shows a few traits nothing major, it just seems the school want a diagnosis for some reason, i am worried it is to cover there own failings, ie they havent really provided him with the kind of work matched to ability, he is gifted too you see could they be covering there tracks is is behaviour bad because he bored???im just not sure.What happens at first appointment with CAMHS surely they dont give a diagnosis at first appt, they will listen to waht i have to say wont they and do i have a right to read everything that has been written about him. Mrs F x

 

Hi

 

Thing to remember is that in a lot of cases children present themselves differently in various situations, eg might behave well in school, but be like someone possessed at home. My son has on occasions behaved appallingly prior to an appointment with his specialist, then angelic in the consultation room (and vice versa - she's fortunately seen everything!). There are well documented reasons for this (tiredness/anxiety/etc are all factors). Your son may well fall into this type of category. I personally think that the school sound supportive. Believe me, in my son's case, his school only bent over backwards because I put a rocket up them! It may well be that they don't have much experience dealing with ASD children and don't know what to expect, etc. Nevertheless I think it's good that they do seem to want a diagnosis.

 

With regards to CAMHS, I guess whether they make a diagnosis first appointment depends on how obvious your son's traits/behaviours/etc are to them and how much background info they have from other specialists, teachers, etc. My son saw a specialist Paed who carried out an ADOS (observation assessment designed to look for autistic traits). It was an agonising 10 days later before we got the results because it was carried out by the specialist and a SALT, it was videotaped and they both needed time to look back over the footage frame by frame looking for things like eye contact, etc. Very difficult to know how quickly you'll get a diagnosis.

 

Best wishes.

 

Caroline.

[di30]

Hi

 

My son is very quiet in school, and makes up for it at home where he is very distressed from all the pressure at school.

 

The Camhs doctor had also asked my son questions as he said due to him being 12 yrs old it would be good for him to speak up about his feelings.

My son said he feels very different to his peers and could never imagine being like them, he also told the Camhs dr he has been reading up a lot on ASD as his other specialists advised this and he said he feels like he fits in with Aspergers.

 

The dr did say to us is heading towards the diagnosis of where he does truly believe it is aspergers going by all the information he has and from what he can make out with our son, but just needed to complete a few things first to rule other issues out too.

 

I am hoping the school will support him further anyway due to the other week where I had to report him missing from school to the police, although we had taken him in ourselves we had a phone call from the attendance officer to say he hadn't gone into registration either or the first 2 lessons, where this had obviously made us panic due to his vulnerability etc.

He was unfortunately in the school toilets for over 2 hours stressing about speaking tests, where we had already resolved this at the school a week earlier for him to do this separately and at break times so that he didn't have to do this in front of everyone else, we were informed then he also skipped the fourth lesson a few days berfore and this was drama.

He had first started skipping games/pe lessons of where now he does not take part and stays with the head of year.

 

We are hoping the school are taking this seriously, because this just goes to prove he cannot cope whereas further help and support are naturally required.

 

I will be informing this to the camhs doctor at the next appointment on the 12th July, I do feel a diagnosis is essential in order to prevent this getting any worse and the school will then need to take this serious and deal with it.

 

We all want the best for our children, and it seems we have sometimes have to fight to get what we want for them, but just don't give up.

 

All the very best.

I will keep you posted of my son's progress.

 

Di xx