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:( I'm very confused...my nearly 4 year old son was referred to a 'specialist' by his health visitor after the playgroup said they were concerned about his unusual behaviour.He was seen by a doctor XXXXX on the 3rd of march and he agreed with me that it was likely A.D. had asperger's syndrome.He told me that he would refer him to the five autistic spectrum team so he could see the ot etc.On Monday he was seen by a peadiatrician who asked some questions about A.D. and said in his opinion it's not asperger's as he's such a good talker and he likes to play with his siblings and he's very intelligent for his age.He's writing to the playgroup to ask for their assessment so he can try to determine exactly what it is that he has,he definately has something but what?My head is all over the place and i was wondering if anyone else has had this problem and if my son could have asperger's even though the peadiatrician thinks otherwise.Please advise me as I really need some advise.Thanx :crying: Edited by phasmid

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My son is an exellent talker but his understanding of speech is delayed, my son loves to play with kids but does so in a very immature manner and does not behave appropriately when playing, my son is also very bright in some areas too. He was dx HFA last year after 4yrs of his Pead saying he was not on the spectrum. I had to fight tooth and nail to get him referred to the Autism Team for assessment and once referred, he was assessed and dx within 5mths.

 

You are his mother, if you believe he is on the spectrum, then stick to your guns b/c my Pead (and I'm sure many others) got it wrong. I'm his mother, i knew what was wrong with my son and I was proved right in the end.

 

Hang in there hun and go with your heart.

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Hi,

 

A little suprised he would rule out Aspergers for those reasons. I would of assumed someone with Aspergers could be talkative, like to play with siblings and be of high intelligence. We are concerned that our eldest could have Aspergers, and she is all of the above. As TM says, stick to your guns.

 

Debs x

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My son is an exellent talker but his understanding of speech is delayed, my son loves to play with kids but does so in a very immature manner and does not behave appropriately when playing, my son is also very bright in some areas too. He was dx HFA last year after 4yrs of his Pead saying he was not on the spectrum. I had to fight tooth and nail to get him referred to the Autism Team for assessment and once referred, he was assessed and dx within 5mths.

 

You are his mother, if you believe he is on the spectrum, then stick to your guns b/c my Pead (and I'm sure many others) got it wrong. I'm his mother, i knew what was wrong with my son and I was proved right in the end.

 

Hang in there hun and go with your heart.

>:D<<'> thanx for your reply,it's nice to know that i'm not the only one going through this.Should i ask for a second opinion or wait til the paed sees A.D. again in 6 months time?

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in his opinion it's not asperger's as he's such a good talker and he likes to play with his siblings and he's very intelligent for his age

 

Both my kids have above average vocabulary for their age, they are excellent speakers, they play together and with our NT daughter and they are both extremely intelligent, top 1% and top 10%. They also both have a diagnosis of asperger's.

 

Lisa

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Hi,

 

A little suprised he would rule out Aspergers for those reasons. I would of assumed someone with Aspergers could be talkative, like to play with siblings and be of high intelligence. We are concerned that our eldest could have Aspergers, and she is all of the above. As TM says, stick to your guns.

 

Debs x

Thanx Debs...I hope the playgroup's assessment will let the paed see that it's not just me that thinks there's something wrong...he agrees there's something but what does that mean? :tearful:

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Hi Magz :)

 

was this paed, part of the Autism Team??

 

Because it doesn't sound as though he knows very much about AS at all!!

 

My son had very advanced speech and language development when he was little, is 'gifted' and always wanted to play with other children...and he has AS!

 

Bid :bat:

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Both my kids have above average vocabulary for their age, they are excellent speakers, they play together and with our NT daughter and they are both extremely intelligent, top 1% and top 10%. They also both have a diagnosis of asperger's.

 

Lisa

Thank you Lisa,i'm not going insane then?Now what do I do?Should i wait it out?

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Hi Magz :)

 

was this paed, part of the Autism Team??

 

Because it doesn't sound as though he knows very much about AS at all!!

 

My son had very advanced speech and language development when he was little, is 'gifted' and always wanted to play with other children...and he has AS!

 

Bid :bat:

I really don't know anything about this paed,I can't even remember his name...i'm still waiting on the appointment with the five autistic spectrum team,I don't knoa if he'll still get an appointment with them or if this paed has over ruled everything that the last doctor has said... :crying:

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Magz,

 

Is there anyway you would be able to contact the paed's office and clarify the situation. It may be worth finding out if the Autism Team will see your child regardless of playgroup assessment, and if not, are you able to request that they do, or request second opinion?.Is your HV involved in anyway so maybe she could do some checks for you and put you in the picture? Or GP?

 

Debs x

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he's such a good talker and he likes to play with his siblings and he's very intelligent for his age.

That covers my son as well and he is AS also! Clearly this guy knows squat.

 

Any chance you could ring him/his secretary and ask re the referral? If you go via the appointments department, they should be able to tell you who it was you saw, and how to contact him. If your son has been referred, then a 2nd opinion will not be necessary. If he hasn't been, maybe you could either get back to the original doctor or ask for a 2nd opinion. I wouldn't think though, that one doctor can cancel a referral by another, esp if there not from the same team.

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At four, my daughter's speech was extremely advanced for her age and she could easily hold her own in a conversation with adults. She was also considered intelligent and although she didn't have any siblings, played happily with the children of my friends. She was diagnosed with AS two years ago when she was 15.

 

It doesn't sound as though this Paed knows much at all about ASD - I hope that appointment with the autism team comes through soon.

 

K x

Edited by Kathryn

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You are his mother, if you believe he is on the spectrum, then stick to your guns b/c my Pead (and I'm sure many others) got it wrong. I'm his mother, i knew what was wrong with my son and I was proved right in the end.

 

Hang in there hun and go with your heart.

 

 

Ohhhhh... gosh....

feeling uncomfortable about this even before i post, but i do think I should post 'cos it's how I feel :(

Firstly: not reflection on you,TM, or you either, magz, so please don't take personally... BUT......

 

The paediatrician is actually confirming that there is something to be concerned about; is actually proving very willing to HELP in finding/meeting a correct diagnosis... while the reasoning (as detailed in the original post) MAY seem a little flawed, i don't think any of us here are qualified to challenge that reasoning based on the scant information we've had...

At this stage, you both think (magz/paed) something is amiss... given the paeds wilingness to investigate that, don't you think the best course would be to see what he/she concludes and see if THAT fits first? if it doesn't FIT, then 'go with your heart', but while I'd agree consultants can and DO get it wrong, I'd hate to see their role reduced to purely that of a 'rubber stamp' to validate the preconceptions of the parents... seen too many inept Mums chasing ADHD diagnoses for their perfectly healthy kids to want that! :lol::lol::o

 

L&P

 

BD :D

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We've had a couple of conflicting diagnoses. The geneticist believes there is a syndrome in there somewhere and was incredulous when my son got an ASD diagnosis. So even though we have a label we're not sure it's right. Frankly we're waiting for the testing to get more accurate before we know for sure, so that's another 10 years. The current diagnosis process is so very inexact - little more than a check list - that I think there is a certain amount of over-diagnosis. I would count myself very lucky to have a paed who seems *very* on the ball.

 

BTW you won't be able to get a second opinion until you get the first one.

Edited by call me jaded

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Hi

 

I totally understand what you're going through just now. I put up with a health visitor, GP, nursery teacher and paediatrician that told me that my son was going through the terrible twos, I needed to be firm, he's boisterous, etc etc. I made a point of telling them that I thought my son had an ASD namely Aspergers. I did a lot of research (I'm not making myself out to be an expert ? far from it). I just knew that something wasn't right ie he'd bang his head off walls, hit himself in the face, make horrendous threats, try to run out in front of cars on the road, go from calm to furious within seconds for no apparent reason, the list goes on! I kept diaries detailing everything that happened that day just before I went to bed. These behaviours/traits almost become normal because we live with them day in day out, but I found looking back at what I'd written that when I doubted myself it gave me amunition to go back to the specialists with. It's also easy to forget odd things that happen, especially when on a daily basis. As my son got older (he's 4.5 now and we only got a diagnosis 6 days ago), it became more and more obvious to everyone that something wasn't right. Even then, the nursery manager, health visitor and paed still claimed he didn't have Aspergers. Again, the more research I did and finally finding this forum (what a godesend?!) it was obvious that kids on the spectrum don't tick every box on these damn checklists that specialists have. As parents we know that, but I wonder if specialists do. Please don't give up. My advice is to stick to your guns, be consistent in what you're saying, keep written records of who you speak to, what's said, dates of meetings/assessments, odd things that your child does, etc and lastly pester the hell out of specialists. I phoned them all on a monthly/fortnightly/weekly basis. I think they got fed up of me and finally decided to shut me up! Seriously, I think it was a long hard slog, but I was lucky in that we've got a fantastic care worker who witnessed a lot of what was going on. She backed me up that something was definitely not right. I asked her to attend assessments/appointments and speak to the specialists about her observations. The specialists had no choice but to listen to an independent person who wasn't giving a biased opinion. Don't let anyone tell you that there's nothing wrong. I frequently turned the tables, and said 'okay, if you're saying it ain't Aspergers, then tell me what it is?'. Needless to say they couldn't! Prior to appointments (about 10 days in advance) I typed out a report detailing what my pregancy was like, what the birth was like, when I noticed things weren't right, my child's development, odd traits, behaviours, obsessions, etc. This report wasn't screeds and screeds, it was mainly one or two line bullet points. It definitely helped. Keep your chin and and keep going. I've babbled and babbled, but I hope that maybe there's a few pointers for you.

 

Best of luck.

 

keep in touch and let me know how you get on.

 

Regards

 

Caroline.

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Our Paed has given Asperger tendencies/traits and PDD-NOS to a number of our kids and on one report he has said that the dx could change with time. He said on one report that round about 10 was the optimum age for a dx of Aspergers' so he has given PDD-NOS in the interim.

 

I think that ASD is able to be established from an early age, but to actually pin the tail on the donkey as AS is probably much easier around 10.

 

This Doctor sounds like he has your child's best interests at heart but he is cetainly not overflowing with bedside manner.

 

The main thing you need to chase is provision, the dx is almost secondary, although having been ther, got the straightjacket, I know that it is much easier to bargain from the point of a firm DX.

 

Stand fast

 

Best wishes

 

Helen

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Hi Magz,

 

Don't know what your Paed. is like but mine saw my daughter from birth until she was 11yrs old (3/4 times every year) for various medical problems (failure to thrive and chronic constipation) - he totally missed it and put lots of her behaviour down to her being very strong willed.

 

Hope you get somewhere soon.

Take care,

Jb

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mm i do believe some kids with AS are very good with speech but their understanding isnt too good. surely proffessionals dont expect our children to follow a rigid pattern?. are we not all different in some way?

gawd!

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Magz,

 

Is there anyway you would be able to contact the paed's office and clarify the situation. It may be worth finding out if the Autism Team will see your child regardless of playgroup assessment, and if not, are you able to request that they do, or request second opinion?.Is your HV involved in anyway so maybe she could do some checks for you and put you in the picture? Or GP?

 

Debs x

thanks debs,i'm going to phone my health visitor on monday so maybe she can help me out a bit

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That covers my son as well and he is AS also! Clearly this guy knows squat.

 

Any chance you could ring him/his secretary and ask re the referral? If you go via the appointments department, they should be able to tell you who it was you saw, and how to contact him. If your son has been referred, then a 2nd opinion will not be necessary. If he hasn't been, maybe you could either get back to the original doctor or ask for a 2nd opinion. I wouldn't think though, that one doctor can cancel a referral by another, esp if there not from the same team.

thank you...i don't think they were from the same team although the paed had heard of the 1st doctor we saw...i'll keep u all posted

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At four, my daughter's speech was extremely advanced for her age and she could easily hold her own in a conversation with adults. She was also considered intelligent and although she didn't have any siblings, played happily with the children of my friends. She was diagnosed with AS two years ago when she was 15.

 

It doesn't sound as though this Paed knows much at all about ASD - I hope that appointment with the autism team comes through soon.

 

K x

wow you've had a long w8 for a diagnosis...i'm seriously having doubts about this paed's knowledge on asd...i need to keep pushing for my son's sake

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Ohhhhh... gosh....

feeling uncomfortable about this even before i post, but i do think I should post 'cos it's how I feel :(

Firstly: not reflection on you,TM, or you either, magz, so please don't take personally... BUT......

 

The paediatrician is actually confirming that there is something to be concerned about; is actually proving very willing to HELP in finding/meeting a correct diagnosis... while the reasoning (as detailed in the original post) MAY seem a little flawed, i don't think any of us here are qualified to challenge that reasoning based on the scant information we've had...

At this stage, you both think (magz/paed) something is amiss... given the paeds wilingness to investigate that, don't you think the best course would be to see what he/she concludes and see if THAT fits first? if it doesn't FIT, then 'go with your heart', but while I'd agree consultants can and DO get it wrong, I'd hate to see their role reduced to purely that of a 'rubber stamp' to validate the preconceptions of the parents... seen too many inept Mums chasing ADHD diagnoses for their perfectly healthy kids to want that! :lol::lol::o

 

L&P

 

BD :D

thanx for you'r reply,my ex partner(A.D.s dad) agrees with what you've said thats why i'm a bit confused as what to do next...i just feel unsettled again because we thought we knew exactly what was wrong with A.D. but now it's like i'm in the dark again... :blink:

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We've had a couple of conflicting diagnoses. The geneticist believes there is a syndrome in there somewhere and was incredulous when my son got an ASD diagnosis. So even though we have a label we're not sure it's right. Frankly we're waiting for the testing to get more accurate before we know for sure, so that's another 10 years. The current diagnosis process is so very inexact - little more than a check list - that I think there is a certain amount of over-diagnosis. I would count myself very lucky to have a paed who seems *very* on the ball.

 

BTW you won't be able to get a second opinion until you get the first one.

i'm just a bit unsure as to weather i've had the 1st diagnosis or if the paed is the 1 giving the 1st diagnosis...very confused!! :fight:

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Hi

 

I totally understand what you're going through just now. I put up with a health visitor, GP, nursery teacher and paediatrician that told me that my son was going through the terrible twos, I needed to be firm, he's boisterous, etc etc. I made a point of telling them that I thought my son had an ASD namely Aspergers. I did a lot of research (I'm not making myself out to be an expert ? far from it). I just knew that something wasn't right ie he'd bang his head off walls, hit himself in the face, make horrendous threats, try to run out in front of cars on the road, go from calm to furious within seconds for no apparent reason, the list goes on! I kept diaries detailing everything that happened that day just before I went to bed. These behaviours/traits almost become normal because we live with them day in day out, but I found looking back at what I'd written that when I doubted myself it gave me amunition to go back to the specialists with. It's also easy to forget odd things that happen, especially when on a daily basis. As my son got older (he's 4.5 now and we only got a diagnosis 6 days ago), it became more and more obvious to everyone that something wasn't right. Even then, the nursery manager, health visitor and paed still claimed he didn't have Aspergers. Again, the more research I did and finally finding this forum (what a godesend?!) it was obvious that kids on the spectrum don't tick every box on these damn checklists that specialists have. As parents we know that, but I wonder if specialists do. Please don't give up. My advice is to stick to your guns, be consistent in what you're saying, keep written records of who you speak to, what's said, dates of meetings/assessments, odd things that your child does, etc and lastly pester the hell out of specialists. I phoned them all on a monthly/fortnightly/weekly basis. I think they got fed up of me and finally decided to shut me up! Seriously, I think it was a long hard slog, but I was lucky in that we've got a fantastic care worker who witnessed a lot of what was going on. She backed me up that something was definitely not right. I asked her to attend assessments/appointments and speak to the specialists about her observations. The specialists had no choice but to listen to an independent person who wasn't giving a biased opinion. Don't let anyone tell you that there's nothing wrong. I frequently turned the tables, and said 'okay, if you're saying it ain't Aspergers, then tell me what it is?'. Needless to say they couldn't! Prior to appointments (about 10 days in advance) I typed out a report detailing what my pregancy was like, what the birth was like, when I noticed things weren't right, my child's development, odd traits, behaviours, obsessions, etc. This report wasn't screeds and screeds, it was mainly one or two line bullet points. It definitely helped. Keep your chin and and keep going. I've babbled and babbled, but I hope that maybe there's a few pointers for you.

 

Best of luck.

 

keep in touch and let me know how you get on.

 

Regards

 

Caroline.

thanx very much caroline,A.D. is my 4th child & i think by now i should know what's 'normal' behaviour and what's not.i've read up on asd & i feel that asperger's fits my son's 'personality' like a glove...i will keep every1 up to date on what happens & thank you every1 who has taken the time to reply to me,it's much appreciated

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Our Paed has given Asperger tendencies/traits and PDD-NOS to a number of our kids and on one report he has said that the dx could change with time. He said on one report that round about 10 was the optimum age for a dx of Aspergers' so he has given PDD-NOS in the interim.

 

I think that ASD is able to be established from an early age, but to actually pin the tail on the donkey as AS is probably much easier around 10.

 

This Doctor sounds like he has your child's best interests at heart but he is cetainly not overflowing with bedside manner.

 

The main thing you need to chase is provision, the dx is almost secondary, although having been ther, got the straightjacket, I know that it is much easier to bargain from the point of a firm DX.

 

Stand fast

 

Best wishes

 

Helen

thanx helen,i think it's gonna b a long hard slog but i'm willing to be strong & carry on with it so i can do the best for my son(wish me luck!! lol)

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wow you've had a long w8 for a diagnosis...i'm seriously having doubts about this paed's knowledge on asd...i need to keep pushing for my son's sake

 

Magz,

 

I didn't explain that we didn't really start thinking about the possibility of my daughter being on the spectrum till she was about 11 or 12: I didn't have a forum like this to turn to for information in those days. :wacko: . Once we actually decided to go down the route of official diagnosis, we didn't have to wait too long, although we did go down the private route.

 

I hope you get the answers you're looking for: keep going, you're pushing all the right doors,

 

K x

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Hi Magz,

 

Don't know what your Paed. is like but mine saw my daughter from birth until she was 11yrs old (3/4 times every year) for various medical problems (failure to thrive and chronic constipation) - he totally missed it and put lots of her behaviour down to her being very strong willed.

 

Hope you get somewhere soon.

Take care,

Jb

i hope so too,thanx for replying every1 is so nice on here..i feel a bit better being able to 'talk' to ppl who are going through the same thing

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mm i do believe some kids with AS are very good with speech but their understanding isnt too good. surely proffessionals dont expect our children to follow a rigid pattern?. are we not all different in some way?

gawd!

well i think this paed has a checklist and unless the kids tick all the boxes they don't 'pass'!!!lol

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