Aspergers ???

[twocutedarlings]

Hi All,

My daughter who is almost 5 and is due to start school this september, 2 weeks ago we had our first assessment at The Ryegate childrens centre (sheffield),and we have another appointment on the 29th of this month to see the ed psyc for some IQ test, present at our 1st appiontment was a pediatrician, Ed pysc and a speach and lauguage therapist. The outcome of this 2 hour!! assessment was that the they think that she may have AS, and to be honest this came as abit of a shock to us.

The reason for our refferal is our daughter very rarley mixes with her peers at pre school and even looks uncomfy in the company of other children, and will just ignore them and walk away when they talk to her, although she has a wonderful rapor with all the adult there, however we also have a younger daughter aged 2.5 and she plays really well with her.

She is very clever little girl and according to her pre school teacher she is ahead of her peers, however she piont blank refuses to make any attempts to write her name, and doesnt really seem to have mastered holding a pen/pencil correctly, and hasnt yet chosen a prefered hand.

She met all her earlymile stones (walking talking ect) with the set limits, in fact she talked really early

She remember everything (along time after weve long forgotton about it), and always knows what day, date and even what year these things/occasions happened!!

She does have alot unusual interests for a 4 yr old (i use the term loosley) for example the latest is that she want to know exactley what road we are driving on, (she will ask this even if she knows the answer), before that she liked you to ask her what number of the alphabet letter are ie letter G is number 7, she can do this really quickly!! she always knows what date it is and what date it will be next saturday ect ect, she will ask me how old i am 20 plus times a day.

Her eye contact is not bad with us most of the time, however the pead at Ryegate said that it was abit hit and miss, she has a wonderful imaganation and a good sense humor, she has no problems with change to routine at home, however at pre school there has been a few problems.

I just wondered if there any other parents here that have AS children, and what they think of the above, and what was there children were like at the same age.

As you can probably see from the way that i am rambeling!!! i am at my wits end, and i would like the thankyou for taking the time to read this.

Hi there, sorry you are going through this

Our ds2 is almost 5 & also due to start school in Sept. He was assessed at our CDC in December by the autism team (SALT, Psych, paed, OT, playworker etc).
Some of your post is very similar to ds2, he cannot interact with children & can at times find it difficult even to tolerate them near him, although he also (on a 1 to1) can have a seemingly "normal" relationship with an adult, but he struggles with social situations. He does however have very rigid routines eg we must follow the same route to school/shops etc & can't cope with change. He was not given a dx of ASD because his social/communication skills during assessment were felt to be too good however he was given a dx of OCD, Social anxiety disorder with Autistic traits.
His usual paed (he was born prem & also has CP, GDD) has rejected this dx & wants him re assessed & believes him to have ASD so we too are still playing the waiting game.
Anyway i'm rambling too & not much help just wanted to say hello & I understand what a difficult & worrying time it can be.
max

Yes, sounds very typical of Aspergers. My ds is five and shares many characteristics (though all children with Aspergers will be different, of course)
He can get 'stuck' on things or obsessive - like wanting to have the TV remote control and always put subtitles on, or wanting to watch people press buttons at the cashpoint. When he is tired he presses buttons compulsively (leading me to actually throw an alarm clock across the room and smashing it to bits when he kept setting it off ) and he can get disproportionately upset when you try to stop him. He can be negative and stubborn, especially about new things, which is very wearing too. But he has great days and bad days. He can be hugely stubborn and wants to be in charge of everything he does and when he does it, which is causing big problems at school at the moment.
His social interaction is definitely not normal, but he has made friends at school , and seems well liked by most - one mum came up to me at Sports Day (which he refused to take part in really) to say that he was her daughter's favourite little boy at school, which was wonderful. His classmates certainly seem very pleased to see him when we are at the park or whatever. Clever children with Aspergers, diagnosed and helped, can learn social skills.

Can I just say how pleased I am that he has a diagnosis, as school would be a nightmare (or even more of a nightmare tbh) if they were treating him as just naughty for things he can't help. We are currently going for a statement for him as he needs 1-1 help. I didn't think that would be the case, but it is.

Thanks, for your replys

I guess at the moment i am sort of in denial, i know she obviously has problems, but it still came as a massive shock when the pead said Aspergers, everyone else we spoke to ie playworker, Teacher, Senco, early years inclution teacher (all at pre school). all said that there was something not totally right, but then they all said that the were not qualified to make comment. this alone was heart breaking, it actually felt like they knew more about what was going on with DD than i did, at the time i avoided doing any research online as i didnt have a clue what to look for, obviously i have now and its even more clear that is was AS that they were all getting at. Just a couple Q's for you parents i the know if that, ok

How long dose the Dx normally take?

What will they want to do after the IQ test?

Once again thanks for taking the time to reply, its a great help xx

I think you have a dx, to be honest. My ds has a dx from meeting two paediatricians. No IQ test, though he's a bright little boy. And you know what, I would guess they won't do anything. I was sent away with some leaflets and the National Austistic Society website and phone number - I don't get any help really. It's very frustrating. At school he gets some one to one classroom help, and I hope the statement will mean we get more. I want him to attend a social skills group and get speech therapy, and he's on the waiting list for speech therapy and I am badgering his school for a social skills group.
You have to do it all yourself IME.
Sorry if that sounds gloomy.

Pick your dd's future school very, very, very carefully and make sure the school is autism friendly. That's hard to do when the dx is so new, I know, and you are in shock. Call the National Austistic Society and see if there are any groups in your area, try to make contact and ask about local schools. I think it is so important. Children with AS can really fly, but they need to be understood and nurtured.

Thanks Aloha, i appriciate your honesty, and i suppose you could be right, im sure that they wouldnt have even said AS and sent us home with various leaflets ext, if the pead didnt think it was the case, but i dont know, like i said its still a shock, but at the end of the my DD will just as loved whatever the lable.

As regards to schools well that will be another problem i think, its a very good school, and appartently are very good with SEN kids, however its a very busy small school, ie the reception in take is 75 kids, and they have 4 mixed Rec/Yr1 classes, here in sheffield (not what its like elsewhere, we have had to apply for school placements March 2006 for the Sept 07 and Jan 08 intake, so i thick we may have to just see how she goes on unless anyone knows of anything i can do before then?

sorry this should say,

here in sheffield (not sure what its like elsewhere)

My heads abit pickled

It's a bugger that it is the holidays tbh, otherwise you could talk to the special needs coordinator in different schools and see what they offer for children on the autistic spectrum. As soon as the school is open I think you need to be in there meeting the SENCO and getting them and the head on side and making sure they understand your child has Aspergers. Do see if there is autism support in your area. Even if you feel now is too soon and you feel too fragile to access it, it is useful to have it up for sleeve if problems arise. You also need to request a meeting with your child's class teacher to talk about your dd's Aspergers, and make sure the teacher understands that your dd is a bit different. Ask the paed, ed psych etc to talk to you about ways to help your dd at school, and if they forsee any areas of difficulty so you can pass that info onto the teacher. Your dd may also need help from a classroom assistant and that needs to be considered from early on. I would ask the teacher for a home/school book. It's just a normal exercise book in which the teacher writes about your child's day and you can reply. Communication is absolutely vital with Aspergers, so you can nip problems in the bud. What problems have you seen in pre-school? I would tend to assume those will continue at school, and your dd will probably need support around those things. I probably sound as if I am harping on about problems, but you do need to be one step ahead with Aspergers IME.
Ask for a multidisciplinary meeting very early in the term for your dd - ie the teacher, classroom assistant, OT, paed, local autism support person and you and your partner. YOu need to get around a table and talk about your dd and her needs. I would expect a child with Aspergers to be on the SN register and be on something like School Action Plus and have an Individual Education Plan. What's on that plan will depend on any problems she has - eg the writing problem.

tbh, the only problems at pre school has be the social skills, and her refusing to write,but the pead did say that she think this is because she cannot write her name as well as say i can therefore in her eyes its just not good enough, as she expects it to look like adults hand writeing,and of coure it dosent, so she just gives up, she is very clever and actually she read every reading book they had in about 3 weeks and at the moment is on the same reading level as my friend son whos almost 7, and tbh is probably better behaved than most 4yr olds (once you have her attention)lol.waffeling again, im sorry.

but thanks again, sound advice and i have no doubt that i shall read through it again and again.

hi, you've had some great advice and I can't add to it but just some words of support really. My daughter is 7 and got a dx of aspergers a few months ago, I'm still coming to terms with it.My daughter struggled in reception class and the staff there kept hinting that things weren't quite right but I couldn't "pin them down". I waited on a waiting list for 2 years for an assessment and really struggled without a dx so well done for getting one so early (albiet unofficial atm) My daughter is also an excellent reader with a vivid imagination. I am teaching her social skills, in a way, all the time instinctively guiding her, if that makes sense. I have a really good relationship with a SALT as I work at a primary school! she has been invaluable with resources and activites for me to do at home. My daughter opens her eyes in the mroning and asks what day it is, she constantly checks months, days,seasons etc. Can I just add, life seems to be getting easier in a lot of ways as time goes on,I took my daughter to an outdoor pool yesterday and she made 2 friends and spent time with them for over an hour (after a shaky start) which is an amazing achievement for her. Sorry this is so long I got a bit carried away. You've probably fallen asleep!

Hi, Thornrose,

Thanks for your reply, i did actually reply last night but for some reason its not here !!

Anyway my reply went something like this, lol

Its really good to here from a parent of a AS girl as im finding it really hard to find much info online ect about AS girls,

I cannot believe that you had to wait 2 years for an appointment, it must have been awful, we waited 5mth for our first appointment and it seemed like forever, so you have my sincere simpathy, how long did it take you to get an official Dx??, only i have read online that it can be harder for them Dx girls??

What and acheivement at the pool !! you must be so pround of her!! i only hope that my DD will do the same at some point.

Thanks again for everyones replys, i have no doubt that i will have loads more Q's, so if you can, please watch this space !! xxx

I found this interesting and spot on www.aspergerfoundation.org.uk/infosheets/ta_girls.pdf
I try not to read too much stuff as I did at first and it overwhelmed me but Tony Attwood seems to have a lot of interesting stuff to say, imo!!

And remember that just as every child is different, so is every child with Aspergers. Not every sympton will apply and not every approach will be right for your child. Children with Aspergers can and do make friends, just not quite like other kids and not as easily. They don't ever grow out of it, but clever children can learn social skills and develop their strengths and live really great lives. But don't underestimate the importance of social skills and support around social skills at school. Joining in is a huge thing in reception etc, and that's when you can get problems, if your child just doesn't 'get' joining in.
Good luck and don't be too despondent. As you said yourself, she's still the same girl, and you can do lots to help.

i think i have seen a yahoo group for parents with girls with AS.
i have twin girls with autism, and a DS with autism

twocute - the reading side of things is the same as my dd - shes 4 in october and can read like an 8 yr old. She is being observed by SENCO at preschool and fortunatelhy has another year before school. She has been refered to SALT not because she has poor speech we think its more the processing of language. She has problems at preschool as she does at home ie meltdowns at certain times - they think this is because shes got so much going on in her head she just literally meltdowns although it always seems to be at certain times.

As far as social skills are concerned she does lack them although loves other children but doesnt necessarily know quite how to interact with them. She does handflap when excited and still doesnt have a preference regarding hand.
Her imaginative and creative play is excellent. We do have problems with toilet training = unless instigated by me she doesnt tell me she needs to go and will just usually do it in her pants. im obviously concerned that there may be some asperger tendencies and even more concerned at how quickly things can be progressed with a view to her starting school in a yers time. Im also not keen to label her but obviously to understnad her behaviour and help her. Any other comments on this would be v grateful

I looked at thornrose's link - and you know, I think Tony Attwood must ahve been following me round while I was in my teens, taking notes.

I hesitated to give the Tony Attwood link,there are a lot of websites out there which have some very "dodgy stuff" but he seems to really know his subject. Glad to hear someone confirm that he knows what he's talking about. Can I presume that you have Aspergers yourself ladygrinningsoul? I am relatively new to these boards so sorry if that is too presumptious!!

Thornrose, I don't have a dx but am pretty sure. I was in my teens in the late 1970s, a good 10 years before the modern diagnostic criteria were published.

Hi all,

Hope your all enjoying the sunshine (wink).

Well today we have been on a playdate and OMG dd1 actually played with my friend little boy on and off for about 3hours!!, we sat outside so plenty of room for her to get out of the way if she wanted to, im so shocked and obviously well chuffed. Today must have been our 5th time weve been to theres and theyve also been here a few time and usually she just ignores him !!.

Onlyjocking, Yes Yahoo do have a group for parents of AS Girls, ive registered so ill take a look at it later, Thankyou (grin)

Thornrose/ladygrinningsoul, Tony Attwood, has also written a book on AS girls, ive just got it from amazon so ill let you know if its anygood.

Knat, my little girl was rubbish with potty training, she couldnt be bothered and we often have to go back to basics, with me reminding her, try not let it stress you out, she'll get there in the end!!

Although i can only speak from my own experiance as a mother, but from what you have said about your daughter re meltdown ect, i personally think that she sounds like a very clever little girl who possibly not being challenged enough !! so maybe she has meltdowns due to her being bored but obviously only being 4 she is less likely to know how to express her self. We had similar problems last year, but once pre school slowly introduced DD1 into a new room where they do less free play and more structured activates, her meltdowns almost disappered overnight. I hope this helps and hopfully you wont have to wait to long before her SALT assessment our Combined clinic (Ryegate) give priority to pre school children so fingers xx yours will, how long have you been waiting??.

Well we went to the playground today and talk about swings and roundabouts (forgive the pun!) My daughter had a terrible day, she decided everybody hated her, everyone was rude and mean. We left the park and found a nice free Playhouse Disney event, waited AGES to have her face painted only to be told it was for 2-5's (she's 7). we got home and she just had a massive meltdown, calling me an idiot,screaming and shouting. I feel so awful for her, she stuck out like a sore thumb today for some reason. Sorry for the moaning I just feel terrible on days like this!

hi twocute - thanks for the comments - i also think that maybe she isnt challenged enough or maybe needs to find ways to relax and calm a little more!!!! We've been waiting a couple of months now and think it will take about 4 -6 months altogether! Fingers crossed it will come soone rather than later.

Interested what yu said about structured activities and i think that is probably better for my dd as well - will work on this at home and see if it makes a difference!

Hi there

I have a dd who is nearly 8 and has As. I can see lots of similarities, especially the early reading. My dd could read in nursery and was fluent by the age of 5!

Hi All,

Thornrose, sounds like you having a rough time with it at the moment .

Sorry i cannot offer any advice but if you need a good moan feel free dont apologise your doing a good job with your little princess just you remember that !! i must admit the thing with face painting age age 2-5 whats that all about!! FFS no wonder the poor mite had a meltdown what child wouldnt especially after waiting for along time!! how awfull, anyway i hope you had a better day today

TwoCute, I know I'm finding this thread a bit late, but just wanted to offer our story with ds1. He has many of the traits you mentioned. I fretted about Apergers for a while but it appears that is not the case at all. He is an extremely gifted child and so can sometimes have problems relating to other children his age. He is also quite sensitive and has issues with loud noises, transitions, etc. If you are interested in looking into this further there are two really great books out there. One is "The Highly Sensitive Child" and the other is "RAising Your Spirited Child".

Good Luck with everything and HTH