Aspergers? Any advice appreciated. #Update post 37#

[Kiddlywinks]

Just wanted to send you a virtual hug {x}

DS had all the same traits you've mentioned, primary school was his biggest issue as he was academically brilliant but emotionally immature with absolutely no common sense.
He was in the talented and gifted group, but with no support when it was needed for his emotional issues.
Finally towards the end of year 6, the head called me in and informed me that they thought he was on the autistic spectrum, possibly aspergic, and they'd thought that for about 18 months! Gee thanks for that!

School basically washed their hands as he was due to leave for high school.

That's when the battles began. Doctors were no longer allowed to refer, it had to come from the school psychologist, who wouldn't refer as he didn't fit the criteria - had no problem with speech, language, academic ability or the other thing (I can't remember now)
High school on the other hand were amazing, and really supportive, and eventually managed to get him assessed.
It helped us both immensely to finally know what was going on - I always said he 'worked differently, on a different frequency to the rest of us. We are on FM, he was on AM'

He's not severe enough to be statemented, and that's fine. Just has additional support for when his frustrations start getting too much, but that makes a huge difference.
He's in his final year of high school now, and his future is looking far more positive now than I felt it was following the meeting with his primary head.

There is support out there, and whilst we have had a lot of bumpy roads to travel, ultimately, there is light at the end of the tunnel.

I read this, in one of the very many disturbed nights I had in those early days, and I sobbed my heart out as it summed up exactly how I felt, however, it did help me put my own head straight, so I hope it does the same for you x

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[caj]

When my son was diagnosed, I was questioning the 'need' for a statement. The Dr we saw said she only labelled a child when she could see they were going to be labelled with the wrong label.
The biggest bonus was the understanding we then gained ... and staff were better able to ask questions of us, so improving life for us and ds.

Keep asking questions everywhere, it's amazing where and who provides support.

[Hels80]

I am a SENCO and firmly believe that there are children for whom a diagnosis is extremely helpful.
From what you have written, it sounds like your son is one of those. If given, a diagnosis will ensure understanding about that 'low level' behaviour. It will be dealt with in a more sensitive way, throughout his school life. Attempts will be made to understand his needs, rather than label him as a disruptive child that doesn't listen.
We have many children with a diagnosis on the spectrum at our school. It always amazes me how different they all are. One pupil sounds just like your son. He doesn't need an EHC plan (statement), but he has an IEP and support in place to prepare him for changes in routine, reassurance and refocus during tasks, and he has lego therapy to support with his social skills. He is also a hummer and a tapper.

Feel free to PM me if you think I could help with some of the school based qs you have. Not an expert at all though!

[bearandbuzz]

Thank you all so very much for taking the time to reply
Things have been a little hectic for me just recently as I have also had other issues in day to day life to deal with and I've felt at a complete loss.

This came to a head the other day where I just broke down into tears at work

I've managed to get back on track and feel more ready to face up to what lies ahead. I've had a short meeting with the senco, who says not to worry, but will have a more formal meeting next week. It now sound s like she will be doing something more like an iq test, is this the norm?

I now need to think of a list of things to ask at the meeting, going by things you have all said I think it will be a good idea to have an iep for him (if they allow that if he has no formal diagnosis?). I definitely want this to be recorded on his school record as I want any new school he goes to to recognise there is an issue. We live in an area where the 11+ is taken and I do have hopes that he will go to a grammar school as I know he is able enough to keep up, but the question is if he is able to show the work in his books I need order to keep up.

I bought the book '10 things every child with autism wishes you knew' the other day and have been working my way through it, it's very informative. One thing that happened was ds saw the front cover and asked what autism meant and if anyone of our family has autism. I was a bit stumped. I don't want a label for him, particularly if he hasn't been officially diagnosed as he may see this as a disadvantage. I told him I was researching for work, but it does bring up the whole issue of what to say to him, how have you broached the subject with your children?

Thanks once more for your support.

[caj]

Originally Posted by bearandbuzz

Thank you all so very much for taking the time to reply
Things have been a little hectic for me just recently as I have also had other issues in day to day life to deal with and I've felt at a complete loss.

This came to a head the other day where I just broke down into tears at work

I've managed to get back on track and feel more ready to face up to what lies ahead. I've had a short meeting with the senco, who says not to worry, but will have a more formal meeting next week. It now sound s like she will be doing something more like an iq test, is this the norm?

I now need to think of a list of things to ask at the meeting, going by things you have all said I think it will be a good idea to have an iep for him (if they allow that if he has no formal diagnosis?). I definitely want this to be recorded on his school record as I want any new school he goes to to recognise there is an issue. We live in an area where the 11+ is taken and I do have hopes that he will go to a grammar school as I know he is able enough to keep up, but the question is if he is able to show the work in his books I need order to keep up.

I bought the book '10 things every child with autism wishes you knew' the other day and have been working my way through it, it's very informative. One thing that happened was ds saw the front cover and asked what autism meant and if anyone of our family has autism. I was a bit stumped. I don't want a label for him, particularly if he hasn't been officially diagnosed as he may see this as a disadvantage. I told him I was researching for work, but it does bring up the whole issue of what to say to him, how have you broached the subject with your children?

Thanks once more for your support.

See more...

Hugs first! Xx

He's still the same boy you loved before you started attaching a label to him. Remember that. It's important.

We told our son that it meant his brain was wired a little differently to others and then sensitively listed a bunch of strengths and a few things he found harder.

[ali-s]

Originally Posted by caj

Hugs first! Xx

He's still the same boy you loved before you started attaching a label to him. Remember that. It's important.

We told our son that it meant his brain was wired a little differently to others and then sensitively listed a bunch of strengths and a few things he found harder.

See more...

This is exactly how I explained it to DS. He struggled with English but excelled at maths.

[VeryexcitedH]

Can I suggest the book 'dude, I'm an aspie '
I'm not sure who the author is but it will come up on amazon. We bought it after receiving a formal diagnosis for our son as we wanted him to be informed. We basically gave him the book and let him read it to us. It is short and well animated and as he read we stopped and chatted (pretty much like a guided reading session in school!) once he had finished we asked him what he thought and if he had comments to make and he simply said 'i think I've got aspergers. I sound like the boy in the book.' it was a simple and effective way of introducing ut and I would always recommend.
I am currently starting the process of getting him an ehcp, purely to support the transition from year 6 to 7 as I think he will struggle. I have also asked for an Ibp (behaviour plan) so that I can clearly see what has been put in place to support him. He struggles socially and likes his own space but his teacher this year isn't as happy with that as last year's was.

[hibbie]

Oh my word...came on here looking for some reassurance and I've just got it! We are going through so much with my son (6.5) at the moment and so much on here from both the OP) and the other posts sound like sound like him. I've been pushing for a bit now and although I have known for a young age he's been different it's always been put down to other things (mosy recently to the fact that 1 year ago we found out that he had several extremeky hyper mobile joints and weak muscles). He already has a OT and physio involved but since April I've involved the Ed Psych and the school. The school feel that he is not on the Autistic spectrum...he is incredibily intelligent "most academic pupil in a year of 77 pupils" I was told (joint in that position with his twin sister) and he's just a bit shy!
He has major obbsessions with trains and can tell you where points are located on train lines he's never been on before, maximum train speed into stations and on parts of lines and where the speeds change from one to another (again on lines he's never been on before) and is obsessed with maps...once at 3 year old he was able to tell us (from looking at old maps) where a junction used to be and where a slip road used to join the motorway on a Motorway he had never been on before (it had changed before he was even born) when we were going the the airport to go on holiday, in the darkness in the middle of the night,... My husband was driving and I didn't even know what motorway we were on never mind about old juctions!...huspand advised he was correct but it had changed 5 years before! ...Anyway what I'm trying to say is that school etc don't see this side of him or the meltdowns etc!
His sociual skilss have never been very good but this is becomimimg more and more obvious to me as everyone else in his class is improving but his aren't.
We have had a bit of a breakthrough... Physio has picked up on his behaviour and his lack of non verbal and social communication and the OT is now listening about the sensory issues he's having (think I may have posted before about him licking peoples legs in the queues in Florida and pushing, touching people etc) and we have been reffered to a peadiatrician and also an invite from the child with disabilities team to go to an information session on sensory issues in children.
The Physio phoned me and asked if I thought there was a problem and I mentioned aspergers and although obviously not a specialist in this area her words were "trust your instincts!"...
Anyway sorry for the long post... just wanted to get things off my chest etc and the previous posts have given me the reassurance I needed that I'm doing the right thing pushing it further!

[Tinkertangled]

My DS is 6 and was diagnosed with ASD at 2 as time has gone on he has made progress and is now classed as high functioning.
He is very bright but struggles with unfamiliar surroundings and change to routine.
Without the diagnosis we would have really struggled over the years to understand and help him with his behaviours. I know of lots of people who decide not to get a diagnosis even though they acknowledge there is a issue but personally I think it's only the child that will suffer in the long run as without that diagnosis report schools will just assume the child is being disruptive/naughty rather than work to make the child feel happy and secure and offer help with things they might struggle with. As my son was so young the diagnosis process will be different for you but in our area school children are observed in school, then in a clinic environment and they discuss everything with the parents before they come to a conclusion.
Good luck in whatever you decide and the outcome.

[bearandbuzz]

Thank so for all the replies, we had a for appointment last week and she has started the process of referral to the paediatrician, where I'll receive some paper work and start the ball rolling.

The school did some informal testing the other week and intellectually he is coming out very high, only getting one question wrong, apparently this can all be used as evidence.

The more I think about it, the more I want it to be recognised so that he gets the support as he moves on to secondary school. Fro my what I've read it seems that's this process will take a long time, I may not even see a diagnosis at the end of it as he is high functioning, but at least I know I would have tried and also I believe there is now something flagged up on his school record so the secondary schools will have a not even somewhere.