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Dr said its not ASD

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We had a psy Dr say that my DS has NOT got ASD. It is all down to anxiety I have been told.. I really dont agree.

How can the literal thinking, getting confused with more than 1 thing being told to him.lots more aswell.

I have also noticed that he is becoming obsessed with everything in his room having a certain place.

feeling tired from the stress of things.

will come back later to chat.

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Opal, Have some of these >:D<<'> >:D<<'> >:D<<'>

 

We are still waiting for M's assessment so i would be devestated if i was told there was nothing wrong when I know there is.

 

How old is your son?

 

I hope you are ok.

 

mum22boys

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Opal

 

If you feel as a parent that something is wrong don't give up don't be fobbed off keep pursuing it.Peolple with asd are often full of anxiety.

 

Have some of these >:D<<'> >:D<<'> >:D<<'>

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Ask for a second opinion, you're entitiled to one. Doctors do not always get it right, as many on here will I am sure be able to tell you! We were lucky as in our case we found the right person who listened to what we had to say and sent us to the right specialist. He was dx'd in 6 months (little bit more to it than that but thats another story). I know of cases where people have spent years being shoved backwards and forwards getting nowhere. You may have to stand and fight your corner but you DO have the right to that second opinion - don't let them tell you otherwise!

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I used to have stand up shouting matches with the drs me because they said there was nothing wrong with our son.

 

Because he didnt display the behaviours during there assesments then i must be a lier.

 

 

I used to fume as i explained the meltdowns,obbsesions,routines,ect ect ect but it fell on deaf ears.

 

 

Until i had a home visit from one of these people and they saw for themselves what he was like in full swing.Finally i was beleived when they saw the lines and lines of cars that god forbid if yer knocked one outta line !!!!!!!!!!! The tantrum that kicked of because he hated people comeing into the home and the violence that at the time he vented physically on me.Finally they listened and i wasnt a fussy mum.

 

You know what i think the maine problem is.Its that most gps,peadiatricans ect aint a clue how to reconise Autism or the many subtle ways As is displayed and go on the bog standard cant be verbal,mustnt make eye contact,rocking screaming type steriotype who wont be touched.When presented with a verbal,eye contact making,freindly individual then they think nar this isnt autism.

 

We need more specialists and ascess to them.

 

Good luck with it keep pushing and fighting youre the mum you know youre child.

 

Paula

Edited by Paula

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Paula

 

I have heard of a professional saying to someone 'oh no x cant have aspergers, you would know he would be in resedential care and wouldn't be able to lead a normal life and have a job etc etc'

 

That is from a professional. :wallbash:

 

There is not a lot of hope really. :(

 

I have a.s. I am lucky in that ihave a job and bring up two children.That does not mean i do not have it. :rolleyes:

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This must be so frustrating for you Opal. Have you gone in with a list of things that he does or doesn't do that tie in with his ASD and explained why you think it fits him? I was very lucky with the paediatrician that my Ds1 saw yesterday as she could see from the way he was playing and his behaviour that he did have some sort of ASD, though we won't know the extent until he's a bit older. But even with her I told her what he was like at home and how he differed from other children.

Edited by Bullet

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Hi Opal,

 

>:D<<'> >:D<<'> >:D<<'> I think it's time to go back to square one and ask for a referal to a different "expert" one who specialises in ASD.

 

I was amazed when my son was dx with AS because I didn't think he fulfilled enough of the criteria but the psychiatrist agreed that his problems are only really beginning to manifest now (although we had suspected since he was a toddler) and we should take steps to offer him coping strategies to ease his transition to high school and adult life.

 

This was why she went ahead with the written dx, it is already making a difference and my son feels we understand him more.

 

I think it may be worth you mentioning any experience you have had of ASD (not your child's) but perhaps friends' children who you know with AS, research you have done on the web and books you have read and that you have recognised many of these traits in your child and want to build strategies while he is young. That you are not looking for a label as such, just a diagnosis which will help him in his school life particularly.

 

Keep Strong,

Daisy :)

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hi opal know how you feel my twins have not been diagnosed yet but i know in my heart they have it we are the parents who live with these children every day of our lives we know them better than any specialist ever could i have give up trying to get a diagnosis for the moment just enjoying my kids for who they are will get around to it eventually know what your going through i felt the same way no one would believe us an they still dont but i dont care about them anymore i just care about my kids there are a lot of people out there who will help you and do ask for a 2nd opinion you are entitled to it sending you lots of these >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> we are all here to help you keep in touch lots of love karin xx

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we were told at 7 that Com was a bright kid and we were putting too much pressure on him.

 

it took another 2 years (took a while before we asked for the second opinion) to get to the right specialist (in the room next door!) but only 10 mins to get the diagnosis

 

keep at it

 

Zemanski

Edited by littlenemo

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Bullet

 

I think i unintentionally confused you :oops:

 

I am lucky in that i personally do not have any children on the spectrum.My two are N.T. although my daughter suffered from autistic encephalitus for six months.This was something that someone had said to someone else not me.Sorry for the confusion. :rolleyes: I should have been clearer explaining.Having A.S. myself communication is not my strong point.I also find it a job sometimes to understand what people are saying to me :(

 

I guess life would be dull if i was normal :lol::lol::lol:

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I think it was me,

 

I worked with someone who had an ongoing ASD case, when I spoke about me having it, she said she would be surprised, considering the job I do (which understandably I won't discuss).

 

My job requires strong social and empathic skills, and from her experience with dealing with an ASD case I did not fit the criteria.

 

That was simply a reflection of her ASD experience, most professionals if asked would adopt that view becuase for someone to be involved in ongoing care/support then it is serious.

 

In my profession it is a needs led assessment process as laid down by the government, Substansial and Critical needs been the highest, therefore any case is just that, at a critical stage.

 

Most people in my profession would consider ASD serious and only serious, simply becuase that is the assessment process we all work in, no matter what specialism.

 

that is why it is hard and often seemingly unfair for people to find support, becuase ASD is a spectrum disroder, the assessment process can throw up grey areas, unless it is at a serious stage. Again, someone has to make that decision. Which I appreciate it tough when it is tearing your family apart at home, yet the child displays some kind of so called normality when assessed.

 

It's not that professionals do not understand, but they are only as good as their training and awareness and at the end of the day they have to work within a framework.

 

There is a tendancy to mistrust prfessionals, which I have no doubt is often based upon experience, but they are not quite the demons the Daily Mail would have you believe.

 

the system is not perfect and nor are all the people in it, if it does not work for you, forget the anger, campaign to raise awareness, change the system through postive action.

 

It is only through awareness and understanding that things change.

Edited by Hidden Gem

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hidden gem in answer to your e-mail making people aware is harder than you think i have seen 5 specialists

(or they think they are) on asd but most are only sidekicks (ie in training to be psychiatrists or psychologists) who still say there is nothing wrong with my twins (incidentally all these people have only ever saw my twins for 1hour each time) but they can diagnose on the spot that they dont have aspergers if this was someone with more than 10years experience i could accept that but only after every test has been done (although we filled out the disco form this was totally ignored by one specialist,incidentally he took a course of asds/aspergers with the nas) how can we change the system when the system does not want to help people like us they call us parents paranoid say our children are not on the asd the reason for this i have discovered is by giving them a diagnosis they will have a range of help and benefits but by denying this they lose out i am not having a go at you as a person i am just angry at the system which is so wrong in this country but in places like america or sweden your child will be diagnosed within 2 weeks ( i know about america as my niece was diagnosed with add within seven days) it is hard enough for us parents who dont have a diagnosis living with these children every day knowing what is wrong with them when we have a government whos critieria is so antiquated it came out of the arc sorry all for blowing off needed to be said but know matter how much we campaign the system will never change try filling out a dla form like i didx2 and being rejected for 1 in only 8 days amazing isnt it when they have never even saw my children luv to all karin xx :whistle::whistle::whistle::whistle::whistle::whistle:

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Karin

 

Thanks for pointing out the other side of the coin so well.

 

>:D<<'> >:D<<'> >:D<<'> For you

 

Hope you get some kind of help in the very near future.Remeber you as a parent know your children best and if you say there is something wrong then in all probability it is likely there is.

 

I've been there I've been called neurotic, making thing up etc until finally they all admitted defeat as they watched her under a bed in a dr's waiting room rocking on the floor.Guess what within a day she was in gt ormond street and eventually diagnosed with autistic encephalitus caused by the mmr vaccination but likely to have happened to her due to genetics. :(

 

Best wishes i really feel for you.

 

Let's hope hidden gem is never on the other side of the coin trying to get his kids diagnosed. :(

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Our gp said the same...the ed psych just disagreed with him so glad I kept pressing.

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Ceecee, no, it wasn't you :). I read your post before replying so had your name in my mind when I was posting.

But I was thinking of Opal :D

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Let's hope hidden gem is never on the other side of the coin trying to get his kids diagnosed. :(

 

i would feel as angry and as frustrated as everyone else, the system can be difficult and unforgiving. I can't begin to imagine the difficulties of having a family affected by ASD or any other condition.

Edited by Hidden Gem

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Hidden Gem,

whilst i understand that money is a great factor in getting a diagnsis and in getting support in the education system finding a way of getting to change that is not easy.

Believe me my old Gp was awful hes attitude was many kids are shy.My daughter wasnt shy.I eventually rang our local kids hospital to ask who specalized in ASD.I then insisted my gp refere my daughter which he did but not before telling me i was heading for a slipery slope that he hoped i was happy when we got to the bottom.He said if you start this ball rolling you wont be able to stop it.I left feeling like i had betraed my daughter.

eventually we got our appointment and after two hrs we got a working Dx salt appointment followed and another with the pead thats when we got out dx.

On the subject of education im still battling after having a dx from4yrs.I am going to tribunal in two weeks to try to get support for my daughter who is ecpected to join a mainstream secondary with little or no support because she has no statment.She has no statment because the LEA say her primary have met her needs.

The fact that shes constantly stressed,tantrums like a three yr old and needs to ask the teacher the same question over and over.The fact that she has no danger awarness sensoryissuesncuding major fear of dark,loud noise ople dressed up.She cant cope with supply teachers yet is expected to be able to travel to a large secondary,deal with a timetable,7/8 different teachers,new kids and so new social rules.Any sane minded person would see its a joke.Clearly our LEA are not sane minded.

 

 

I dont mistrust profesionals iv met many excellent Drs,SALTS and our Pead is wonderful.Iv met some wonderful teachers.

Iv also met some who dontwant to learn,who thik ASD is a get out for bad behaviour.

Its not right but its true that its look of the draw if you get a good profetional.

As for changing things yr so right only awareness can change peoples attitude,but as a mom of two 1 who has Asd i have my hands full.I help with a local support group but thats small fry .

There needs to be more training no teacher should teach untill they have been trained in SEN,and i mean at least a yrs training.teachers should be retrained every five yrs or so for a short period of time as should anyone working in care.

 

Opal get that second opinion,I understand yr frustration you shouldnt need to do so.The waiting list are stupidly long.If yr child has language problems you can refere him youself.dont give up you know yr child best.

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You'll notice that i edited down th epost,

 

Much for the reasons you stated and becuase I was getting out of depth - also the sensitivity of this site has to remain in focus.

 

the aim of my post was just to give a very basic background of the professionals. As is aid, if i had children, the sheer pain and frustration of wathing them suffer would be beyond compare.

Edited by Hidden Gem

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I was so fortunate with the paediatrician my Ds saw. She actually said that she had seen shy children and Ds1 wasn't one of them. If anything, he was so selfassured that he saw no reason to communicate.

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>:D<<'> Been there too!! I was adamant my son wasn't emotionally damaged because i'd left his Dad when he was 15 months old. He was displaying behaviours long before that, but would that first paed listen? would she heck. I remember telling her about lining up his cars and he was doing it right in front of her with his head on the floor intently watching the motion of the wheels, " He's playing beautifully!" she said :angry: Everything i told her she dismissed. In fact it was a s though she didn't even hear me. The fact that Lewis knew all of the Thomas the Tank characters by silhouette at the age of three rung enough alarm bells for me , but no, she didn't even comment on it. it was (or should've been to a 'professional' ) blatantly obvious my son had some form of asd. Anyway, she referred me to Child and family Mental Health because she'd convinced herself he was 'damaged emotionally'. When i had my appointment there the woman referred us straight away to the appropriate clinic. But i wouldn't let it lie, i felt like i was constantly repeating myself but i had to get through to someone and eventually after being pushed from pillar to post we got the dx of AS.

So go with your gut feeling, I just wish some of these Doctors would remember none of us actually want our kids to have anything going on with them, we're not wishing it upon them, just looking for answers to the zillion questions we have got in our own minds!

Stick to your guns and let us know how you get on! >:D<<'>

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Hello I am back again.

Feeling a bit down about it all but thanks for all the suport .

Kirstie I have been told the same thing, because my son who is 9, had to cope with us going through a divorce this has caused to be like this. He had problems when he was a baby/ toddler long before his Dad left. he was 6 when his Dad left.

My support group thinks he has aspergers so trying to find out what to do next.

 

I would like someone to read his symptoms and see what you think.

Either I can put them on here or if someone wants to PM me with their email address i can send the symptoms.

I am sure I am right about aspergers even if it might be on the milder scale as the severe ASD is a lot worse.

We still have melt down and starting of self harm mild things which could develop worse but still worrying. I have managed to ease this but the angry and aggression when things dont go just so.Routines,literal thingking. obsessions. Social skills.

The Dr thinks because he did not show sign at school he cant have AS. My Son bottle things up all day and would not dare have a meltdown as he would be so embarassed in from of friends or people at school.

Opal

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The Dr thinks because he did not show sign at school he cant have AS. My Son bottle things up all day and would not dare have a meltdown as he would be so embarassed in from of friends or people at school.

Opal

 

Opal, if the doctor's main reason for not diagnosing AS is because it isn't evident at school, then I have to say your doctor doesn't know AS. Just look at this thread (if you've not already seen it):

 

http://www.asd-forum.org.uk/forum/index.ph...owtopic=192&hl=

 

Are you not entitled to a second opinion - and if so, can you find the name of someone local who specialises in ASDs?

 

Too many doctors are amateurs when it comes to ASD.

 

Elanor

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My daughter has only just been diagnosed with AS (she's 12).

 

She has always had health problems on and off and we put a lot of her behaviour when she was little down to not feeling well and being very naive for her age. Although we always worried there was more to it - it was really only when she got to around 7 or 8 that we thought she seemed 'different' and should be starting to understand more.

 

She's been seeing the same Paed. consultant since she was 6mths old and visited him between 2-6 times per year ever since - for her growth (weight & height) he never suggested to us there was a problem other than he thought she was stubborn, and very strong willed and wanted control (especially over her eating). She's probably visited the GP around 10 times per year on top for constant infections and other things.

 

Last year he referred her to a pysch. team because he thought she was suffering from anorexia (although he didn't tell us that - they psych. did). After six months of visiting their unit on a weekly basis and having a CPN visit the house weekly they diagnosed AS much to the annoyance of the Paed.

 

When the Pysch. contacted her primary/nursery school for info - she couldn't understand how it hadn't been picked up in school as their summary gave all the pointers. She also saw a pysch. when she was in primary school because of her obsessions with noises and subsequent 'tantrums' - their report also gave all the pointers but nothing was suggested or done and at the time we didn't know about AS. At school she was in a class of 30 with a 20/10 ratio of boys/girls - and the teachers were always saying how lovely it was to have someone just sit and be quiet compared to all the hullaballoo from the more boisterous boys. The pysch. said that very often kids get overlooked in school because of this, especially if they have a difficult class - and they come home and explode because they've had to be so 'controlled' in school.

 

Can you go through the school pysch. for help rather than your GP? I'm new to all this and still learning myself - I think perhaps we were lucky we went through a different route than usual so perhaps got more help - although the awful thing is that in our area once they diagnose they have to pull out from their support and you are completely on your own. I know they've said there are support groups and I've just found this one today. They also said to contact the NAS but I don't really know what I'm going to say to them - or if there is anything else we can do. So although a diagnosis has been helpful in knowing why certain things are very difficult for my daughter - but unfortunately they don't get much help after that.

Edited by jb1964

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jb1964

 

I believe that girls tend to present differently than boys withASD and therefore seem to get diagnosed later, not always of course but there have been several cases I have both read and heard of just like yours.

 

I went all the way through school without anyone picking anything up.i always towed the line at school was painfully shy quiet and well behaved.Girls seem very good at masking their A.S.

 

Boys that i know with A.S. do seem to come across straight away as odd, different etc.

 

I have to say though my eye contact is absolutely fine so this was a very obvious pointer that was not there.

 

However at home \i was not the quiet shy well behaved child that i presented to school.

 

I sicerely hope that you get offered support from somewhere.

 

Best wishes

 

Welcome to the forum. :)

 

Its only now as an adult I have began to realise from knowing other family members that I have in fact have A.S. :(

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Thanks Ceecee.

 

Yes we were told that AS girls are particularly good apparently at learning that 'fine' to everything will get people to stop asking questions.

 

Still trying to read through as many threads everywhere that I can - there's so much info on here.

 

Thanks again,

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Paula

 

I have heard of a professional saying to someone 'oh no x cant have aspergers, you would know he would be in resedential care and wouldn't be able to lead a normal life and have a job etc etc'

 

That is from a professional. :wallbash:

 

There is not a lot of hope really. :(

 

I have a.s. I am lucky in that ihave a job and bring up two children.That does not mean i do not have it. :rolleyes:

 

 

Hi that is total rubbish!!! Of course someone with AS can have a 'normal' life lol! :D the PSY that was involved with Matthews dx told us that Bill gates has AS! now look at him a totally sucessful businessman. My grandad had AS and was a professional pianist!! I was told that sometimes AS people can appear 'normal' then every now and then will rear off on his own path again!

 

anyway I know you know that lol but thought I would add!!

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Hi that is total rubbish!!! Of course someone with AS can have a 'normal' life lol! :D the PSY that was involved with Matthews dx told us that Bill gates has AS! now look at him a totally sucessful businessman. My grandad had AS and was a professional pianist!! I was told that sometimes AS people can appear 'normal' then every now and then will rear off on his own path again!

 

anyway I know you know that lol but thought I would add!!

 

I have to say, I belive that was taken from something I said to Cee Cee, I must say sorry for any offence it has caused, but it was taken out of context and I have explained how it come about in a previous message.

 

No one doubts people with As can lead successful lives, in fact I belive there is an employment website for people with ASD - postive tips, types of work etc etc.

 

It is a prime example of how taking something out of context and passing it off as fact not only causes rumour but also offence.

 

For people who have struggled and suffered and feel let down, these comments only continue harbour the mistrust, it would be helpful if, before people made these comments, they actually thought it through and the damage they cause. Even it had been true, does it reaaly advance people's cause here, no, of course not.

 

Going back to another post, these things create barriers which then become harder to break down and it becomes harder to reach the understanding that helps society move on in a postive and benefical way.

 

As I said, sorry if it cause doffence.

Edited by Hidden Gem

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LIz c

 

I am well aware it is total rubbish to say such a thing e.g.' if x had a.s. he would be in resedential care and not be able to lead a normal life and have a job etc'

 

This is not something that was taken out of context that was exactly what was said to me by both hidden gem and hidden gem's partner.

 

And it was told to them by two different so called professionals.The trouble is that people who do nor know about A.S. believe this nonsence.

 

I basically told both of them it is a load of rubbish.

 

What concerns me more is the fact that these people may just be diagnosing our children :(

 

Like you rightly say there are loads of famous and extremely clever people with a.s.

 

A.s. is not the end of the world.It doesn't mean that we are all shut in a home and passed off as no importance.

 

I have an extremely good memory and am well able to remember what was said to me.

 

At the time I kind of got the impression that both of them actually believed this rubbish but then if you don't know too much about a.s. i guess you might do.At the time I did my best without actually being rude to correct them but at the end of the day people need to be much more educated about a.s. and it is comments like this that people then believe that prove it. :(

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Just to add people with a.s are often extremely good in the arts field at writing or drawing, sometimes amazingly talented or they are extremely good on the p.c. many are brilliant computer programmers.It is a spectrum disorder and the ones that are on the higher functioning end of the scale are obviously the hardest to diagnose. :)

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Re.females being harder to diagnose.

Only to an extent,there are many females like myself that are classic/typical ASD.

I didn't get a diagnosis till late teenage years,had been given a brain scan as a toddler,because of my extreme behavior,and fitting [not epilepsy] and the GP told my parents because the brain scan didn't show damage,I was just being a naughty,bad,disruptive child,so that is what they treated me as,it was bad enough for them to continually consider getting me in a childrens home ,but never considered that there could be a cause,teachers told them to get me help,but they didn't bother.

 

I believe in Simon Baron Cohen's 'extreme male brain' theory of Autism,it would explain why there are more males

with Autism,and why in some males it's more recogniseable than in some females.

 

 

Back to topic,Opal,is there no one else to go to for a second opinion?

Where Doctor is said...does that mean GP?

They should not be deciding whether he has it or not,because they aren't trained in Autism and would only know the basics [eg,"it's a spectrum",i'm quoting what a GP said to my mum when she asked him what Autism was and that is all he knew],they should have reffered on to someone who specialises in Autism,or at least is trained in it.

Edited by TuX

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The Dr thinks because he did not show sign at school he cant have AS. My Son bottle things up all day and would not dare have a meltdown as he would be so embarassed in from of friends or people at school.

Opal

Not only is that common in children with ASDs but it's the norm, and your doc should be aware of that. We're in the same position, Opal - J's been recognised as having a 'social and emotional development disorder' but he doesn't tick the right boxes yet to get a full ASD dx so we're now waiting for an appointment with a local specialist to get a second opinion. Deep down I believe that the local docs really think he does have an ASD but can't commit at this point. I'm trying to be positive by thinking it's better to be sure than not.

 

Seems there are (or have been) quite a few of us in the same boat. Keep at it - you know best and you need some form of dx.

 

Karen

x

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I am well aware it is total rubbish to say such a thing e.g.' if x had a.s. he would be in resedential care and not be able to lead a normal life and have a job etc'

 

This is not something that was taken out of context that was exactly what was said to me by both hidden gem and hidden gem's partner.

 

 

What was said was, after you had self diagnosed me with AS - was if I had AS to the level you suggested I would not be leading the life I did.

 

A perfectly reasonable response to the image you protrayed.

 

The problem is Cee Cee becuae of your own ASD it is very difficult to communicate with you, things, becuase of your condition get taken out of context, perhaps that is a failing on our part.

 

As the info on AS seems to suggest, we need to make sure our verbal communication is crystal clar and concise, we obviously did make it clear on that occasion.

 

It's difficult, becuase if I or anyone does not breakdown what we mean, you take it on board and it becomes a fact that you not only think about, but also effects you on a sensitive level.

Edited by Hidden Gem

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Just to add people with a.s are often extremely good in the arts field at writing or drawing, sometimes amazingly talented or they are extremely good on the p.c. many are brilliant computer programmers.It is a spectrum disorder and the ones that are on the higher functioning end of the scale are obviously the hardest to diagnose. :)

 

Yes I've been told that. My daughter is actually very good writing - she has throughout school received awards for this. She also loves reading and drawing and anything and everything to do with a computer or games (PS2/xbox etc).

Edited by jb1964

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Hidden gem

 

i take on board what you say i do have problems with communication but there is nothing wrong with my memory.You need to take on board that you have problems with your short term memory and may have forgoten exactly what was said.It is possible to have a.s. and lead a normal life as i do and many others do.

 

Jb1964

 

Encourage your daughter in her talents.She sounds a great person with much to offer.I too used to get my essays and that read out at school.I believe the reason many aspies can write so well is perhaps because we are usually poor at verbal communication and it is kind of compensating us.Just my thoughts.

 

Best Wishes :)

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ceecee

 

Thanks - we're trying to do all we can - the CPN has told us if we can just hang on in with the school (they are trying their best to get her to have home tuition - and called yesterday to say that they want to arrange yet another meeting) - apparently she gets her options soon ready for next year (yr 9) when she can drop the subjects she gets in a state about (German/Welsh/Music) - and take subjects she enjoys - like English, History, R.E, IT etc.

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