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KateBall

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Hello - I have lurked here a little while before joining up. I would really welcome anyone's views on my situation. I have a son (8) who we always suspected was on the autistic spectrum - many many signs and symptoms - all the usual ones right from birth. However when we eventually got through the assessment process to the final meeting they concluded he was not on the spectrum simply because he was too sociable (by then he had learnt to be - he wasnt always) but thats all they based their decision on. He was diagnosed as having a "communication disorder" and apparently its common for that to go hand in hand with autistic like characteristics???

So the point is we are left with no diagnosis or label - no official support (I feel a fraud being on this site because my son isn't - officially - autistic) - and yet we at home and they at school treat him as if he is autistic - because thats how he behaves. Except he's sociable. He has social difficulties - he doesn't socialise in the same way other children would - but that is apparently irrelevant. I'm not going to bore you with all the things he does do - you know them - he behaves typically like an asperger child. At present we have very good support at school - on the whole - although it wasn't always like this. I think they just realise d the longer they know him the more my assertions about him and how he behaves is true. It very subtle you see but the more you know him, you realise.

 

So I have a child who is officially not autistic - but he might as well be because he behaves as if he is. How can that be? I have had and do have all the same difficulties you guys have - food, potty training, obsessions, tantrums, shoe shops, dentist, behaviour etc etc etc. Are they just trying to keep their quotas down? He'll be expelled when he gets to senior school because they'll have expectations of him that we won't be able to comply with. His junior school have told me that and they would have excluded him for some of the stuff he's done (hit teachers/children etc) - they told me they wouldn't though because they at least understand.

 

I'd really appreciate any words of wisdom - even if its critical.

Thanks

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my two boys 5 and 7 eldest has asp,adhd,dyspraxia and sensory int dysfunction, 2nd boy has been in process for 3 year, no diagnosis as yet but shows more autistic signs than his brother, eldest boy who has the diagnosis is oversocial just does so in a nutty way,undiagnosed avoids all social contact etc doesnt make much sense i know but not all aspie kids are unsocial

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Hi kate

My daughter is sociable in fact she can be to sociable(she once told an old lady in the GP waiting room where we live and the colour of our carpet/sofa).Only today she rang me to say she was angry with her pal,because her pal told her she had revised for a test and then today the pal failed the test and said i should have revised.T said she doesnt want to be her friend anymore because she lied.No amount of reasoning from me was working so far as shes conserned you dont lie.

T upset her LSA because she told her that the kids laugh at her thong,she also said im going to have a new LSA because you cant read(she can but not as well as T wants her to).T told my friend she didnt like the design of her new lounge after my friend spent over a �1000 on wallpaper.

 

T has a dx of aspergers,we had forms for myself and school to complete about her difficulties,2 pead appointments and a SALT report before the Dx was given.The best p[eople to explain the subtle signs are the parents and they should have listened to you.

 

I would ask for a second opinion,take as much evidence as you can,ask school to write a letter explaining his behaviour at school.

 

Good luck dont give in you know best >:D<<'>

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your son sounds likemy 11 yr old, SALT says not def diagnosis, as doclinical pych , ot, physio- yet just like many children here, we treat him as if he is asd as do school (having support from autism outreach at school)

All say is "something" but not enough to give him the label asp/ asd/ dyspraxia!

Is on sen register too, hoping that when we see paed to discuss all the assessment she may have a "label" if not, we will continue to treat him as if he is asd! Because it works!!

Lisa xxx

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So the point is we are left with no diagnosis or label - no official support (I feel a fraud being on this site because my son isn't - officially - autistic) - and yet we at home and they at school treat him as if he is autistic - because thats how he behaves. Except he's sociable. He has social difficulties - he doesn't socialise in the same way other children would - but that is apparently irrelevant. I'm not going to bore you with all the things he does do - you know them - he behaves typically like an asperger child. At present we have very good support at school - on the whole - although it wasn't always like this. I think they just realise d the longer they know him the more my assertions about him and how he behaves is true. It very subtle you see but the more you know him, you realise.

 

Hi KatieBall and welcome to the forum :)

 

It's really frustrating when the professionals don't see what you're seeing and cling to the myth that AS = unsociable and alone. :wacko: It's the quality of the social relationships that is significant, I think, not just whether a child has friends or not. I watch the way my son (not autistic) and my autistic daughter interact with their respective friends and there are definite differences which are so obvious to me.

 

It's good to know that the school is providing good support without the official label, but as you're already aware, there will be more challenges at secondary school in the future. With that in mind, I think the definite diagnosis is worth pursuing.

 

K x

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Hi KatieBall,

 

Welcome to the forum >:D<<'> .

 

I also have an 8 year old son who has AS and ADHD. It infuriates me that "professionals" don't make a firm diagnosis if the child is sociable to some degree :angry: . It's the WAY that children with ASD interact with others that counts.

 

I agree with Kathryn that you should persue a definate diagnosis. Mainly to ensure your son gets the support he needs when moving on to secondary school. Would his school back you up on this? You are entitled to a second opinion, and i personally would be inclined to do so.

 

My son is sociable, but only on HIS terms. He would never talk to a stranger if they came up to him and started talking, but on the other hand i sometimes find him chatting away (about trains!) to a cashier when we go in a shop! He also has "friends" at school, but he doesn't interact/chat with the same way as NT 8 year olds do. If he knows somebody and feels comfortable with them, he will interact with them.

 

Loulou xx

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Hi KateBall

 

welcome to the forum - don't feel a fraud by coming here without a formal diagnosis, anyone is welcome, especially if they can get something out of it.

 

In my opinion it would be worth pushing for a second opinion, as the good thing about having a 'label' for our children is that it should mean a statement ie appropriate support at school, as well as better understanding of our kid's needs and behaviours. Of course that isn't always the case, and mant of us can testify that the service we get from 'professionals' can be sketchy at best, but at the end of the day we fight for our kids rights.

 

Zaman

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Thank you so much for your replies.

 

I know in my heart of hearts I've got to get a second opinion. But how do I go about it? Whats the point of going through it again if the same criteria is used as it will not be met again. Once that box was ticked - that my son was sociable (didn't matter in what way) then he failed regardless of everything else. Flapping hands, obsessions - you name it.

 

The assessment process was so stressful and took years. They ignored much of what we said. One Dr saw our Son for about 10 mins on the day before the final meeting - thats all - 10 mins out of 8 years to make an assessment. Crazy.

 

One other thing though - has anyone else been told that they have a child who has autistic characteristic but is not autistic. Is that possible?

 

I am in awe of you all. I know these children are fantastic people - I just want to do the best for my son - I don't want to get to him being 14 or so and regretting not doing something sooner. The truth is I suspect that they just don't know the answers.

 

As a matter of interest my son has red ears quite often and I've always thought it linked. Looking at other threads on here it turns up doesn't it. But my main question is - does anyone know if their child is colour blind. you see I am and I think my son is and I am wondering if that might have any connection too. Maybe a coincidence - but worth asking the people who truly know the answers?

Thanks again

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I would also persue a second opinion. DS1 has just been dx with mild autism, they said mild as he has all the traits of autism but he had no speech delay - I thought that was AS but what do I know! He is very sociable and loves attention, he is more than happy to wander up to complete strangers and tell them all about his computer game or pokemon cards. It's they way he socialises that is the problem and he tends to prefer younger kids, adults or kids like him. I also have 2 cousins with AS, 1 is sociable and the other is not unless it is on his terms.

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Hi,

 

I felt like I really understood where you were coming from. >:D<<'>

 

M is 6 - no diagnosis yet, assessment in April. Today he had E.P assessment. I was disappointed with her findings as he was having a 'good' day and was model pupil in class! Except when she spoke to him and he refused to talk to her and ran to the corner of the room. She discussed her observations with us and said she had watched him at playtime. He played football and she said it was unusual for kids considered to be on the spectrum to play football!! He's 6 and will kick a ball about when he wants to. Does this mean he won't get any diagnosis! Who knows.

 

I agree with loulou. My son can be sociable BUT on his terms and when he wants to. You can't come to a conclusion by a brief assessment.

 

I am hoping not to end up feeling as you are in several months time but who knows how M will be percieved on the day. Do try to get a second opinion, you know your child best.

 

mum22boys

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I'd go for another opinion. It seems to me that these "professionals" are basing their dx on the fact that your son is sociable hence cannot be on the spectrum.

 

Hogwash.

 

The fact that they use a statement like this demonstrates - to me - how little they know.

 

You see, it's not about whether your child is or isn't sociable, it's about whether they have "difficulties" with sociable behaviour / how appropriate their sociable behaviour is.

 

For example, The Boy is very sociable. He loves hugs and kisses. The trouble is that he will happily hug and kiss a complete stranger in the street. So his sociable behaviour is inappropriate.

 

I also do some buddy reading at a local school with a lad with Aspergers. He is sociable with me & has been since the very first day we met - to the point where I have to ask him to move away a little as he has no concept of personal space, virtually ends up sitting on my knee & has no qualms about where he touches (not in a sexual way you understand, he just needs to be shown what is appropriate and inappropriate touching).

 

 

BTW don't think you are a fraud for being here without a dx, you are not on your own & you are very welcome to join us, if you think you can cope with some of the barmpots on here. :lol:

Edited by Jill

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I recomend that you first contact whoever did the report and explain that you disagree with the finding.Ask to meet and talk about the word sociable,explain that although he appears friendly he has clear social problems,explain how he interacts with different age groups my daughter is great with adults or small kids yet struggles with kids her own age.If you cant get anywhere then ask yr GP for a second opinion.When the question comes up again dont say hes sociable say he socialises in a way inappropriate to his age and expain the subtle differences.

Could school ask the EP to do a report on him that would show the social problems at school,it may help as evidence.

Good luck

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Hi and welcome, just to reasure you there is other members here with children with undiagnosed ASD/AS/Autism so you really dont have any reason to feel your not excepted, in a way going throw this with no diagnoses is the hardest so really you need the support more than ever.

 

J is suspected AS by many proffessionals involved including his Gp but because there is no specialists in our area then many children like J are going undiagnosed.

 

I dont know if it a control thing they are doing to keep the numbers down but what is clear is there isnt enough specialist in the areas where these children live.

 

I have become a member of the National Autistic Society and I have had information sent to me about issues about diagnoses, and you and I are not alone but the info has given me valuable skills to help support my son.

 

They also gave me further details on further assessments and I going throw the process of trying to get J assessed but its prooving very time consuming, and the PCT in my area are very resistant to the prospects of the funding implications.

 

This is another reason why many children undiagnosed because the process to fund the assessment is very difficult and some dont pass throw because PCTs wont fund it.

 

so families are left with no further investigations, it could be the do have AS/ASD/Autism but they go undiagnosed.

 

Anyway we are still chugging away with all the protacol, we cant give up, but its very frustrating but I know you will definatly be welcome here and we can support you throw the red tape of it all.

 

JsMum

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I got a second opinion for my son as the CAHMS person that did the first DX was a fool whose opinion I didn't rate to tell me the day of the week.

 

I basically researched who seemed to know what they were talking about when it came to the autistic spectrum in London, went to my GP and asked her to refer me which she did (other people on this forum have not een so lucky). The waiting list at the clinic was 18 months, but I used to phone them every few weeks to see if they had a cancellation. We got seen in less that 6 months in the end, and the diagnosis was explained to me thoroughly at the end.

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When my son had his multi disciplinary assessment over 2 years ago he was said to have 'possible autistic spectrum difficulties'. It was the first time they had ever seen him and he was very non compliant. As he did have mild language delay they said he didn't have aspergers as AS kids have normal language development. As they saw him more over the last couple of years, his consultant said he was definately an aspie without a doubt. When he was refered to the specialist child psychiatric hopsital where he goes now they said it was glaringly obvious he has aspergers but the psychotherapist at CAHMS insists he isn't AS but has attachment disorder!!

 

He is an overly sociable child. He wanders off and talks to anyone and has no sense at all of 'stranger danger'. He tells people off for swearing or smoking and grabs hold of people. He also makes extremely personal and innapropriate comments to people. He does lack social skills but not in the sense of being a loner or being withdrawn but being the total opposite. He doesn't know what is approriate communication and doesn't communicate in the same way as his peers.

 

Sorry to ramble but hope that helps.

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Hi Kateball I also wanted to say that you have company here.There are a few of us who have children with no clear Dx,Dx ASD traits,Dx Social Communication Difficulties........So you are not alone.I believe even more here have obtained a clearer Dx as time has gone by.Regards Karen.

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Thank you, thank you so much for all your replies. I got tingles running down my spine when I read them - just to know for once that someone somewhere understands. At long last. You can't blame them totally I suppose (so called professionals) - they don't have children like this 24/7. But they're just not good enough are they. I'm going to digest your replies a little more and I will come back because some interesting things have been said. I feel like I've joined a really really special club. Thank you.

Kate

Edited by KateBall

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Welcome to the forum - hope you get lots of good advice and friendship.

 

My son (9) was diagnosed HFA and is undeniably very sociable, although not altogether in a socially acceptable kind of way.

 

I don't think there's any hard and fast rules about levels of sociability for diagnosis, is there? ASD is a spectrum which means that all of our children might be more of something and less of the other, but the sum total might add up to a reliable diagnosis of autism.

 

I'd suggest you go back to your GP and ask for a second opinion. You are entitled to it.

 

Best wishes,

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hello

i think you should seek/push for a second opinion if your gut feeling tells you they are wrong .My son (4 yrs 10mnths) has just been diagnosed with severe aspergers. I wrote down every thing about his behaviour over past 2 years and using video footage and diary regularly updated the Doctor at the Child Unit where they were assessing him. He has attended nursery since 3 and half and has aclimatized to what is required of him socially so on the surface appears quite sociable but with alittle bit of careful listening to how he speaks to people and watching you can see he is totally in his own world and has realised he cant always drag everyone into his world. He doesnt take well to new people coming into the school or group and can be really hostile outside his group.When he was younger he used to bite his freinds , now he growls at them....when he cant get them to play his game his way and mentally this is so scary to him ....becuase he cant understand why we cant all do things his way....So he plays on the fringe of everyone elses requirements but still within the limits of what he can cope with but on the surface appears very sociable and talkative but his conversations are all one sided ...he spouts facts at you or tells you what he has done , he is not really interested in eye contact either but will tell someone a very literall thing about themselves at totally inappropriate moments. His friends also have realised that it is very amusing when they try to hug him and he bolts ......

Di

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