I'm beginning to suspect my dd mayhave asperger's syndrome... does it matter? should I do anything about it?

[myquirkygirl]

DD1 is 5 and in reception. She is getting on fine at school really, but can be a bit socially withdrawn. They have referred her to the Educational Psychologist.

She will never initiate play with the other children, but will join in if they invite her. She is poorly coordinated and has sensory issues (has been assessed for this by OT). She clearly wants to play with other girls but can lose the plot when things don't go her way. She has lots of invisible friends, so she can retreat quite comfortably if she finds things difficult, and does withdraw quite often. She also loves books so will withdraw with a book sometimes.

I have been looking at the Australian diagnostic scale and she seems to score quite highly on a number of points. Not all of them by any means, but enough to ring bells with me.

But she is happy to go to school and is getting on well. She is reading well now (reading book this week is Dick King-Smith)and although her writing is large and unruly and her spelling is very much phonetic still, she does enjoy writing and drawing. She is also doing fine with maths.

I have been reading the Asperger Foundation info sheet on girls with aspergers and it seems that girls can often manage better with the condition than boys. If applicable to my dd, I would say this was certainly true. In which case... is there any advantage in investigating my suspicion, or would it just provide a stigmatising label?

.. just to complete the picture, although she is socially rather immature, her language is very advanced. When she started reception aged 4, they described her use of language as being like an 8-year-old's.

I would certainly get your suspicions investigated and I will go onto explain why below.

A "label" should be seen as a signpost to getting more help; it is certainly not stigmatising to get a "label". You owe it to her as well as yourself to find out for certain if AS is a factor here and it could well be. You have looked at a diagnostic scale and it has rung several bells with you. She deserves to fully know and thus you can all face the issues head on rather than adopting the burying head in the sand/denial approaches which some parents do.
Such an approach helps neither of you ultimately. Some girls with AS can mask their difficulties but it can come at a high price, also girls with AS are very much under diagnosed because they can sometimes "hide" it. That though does not make it any better or easier though to deal with.

If your DD has been referred to an EP it is something that is not done lightly (and such appts within schools can be as rare as hens teeth). She has been fortunate to be referred early and actually seen - I still know of children in Y6 who are waiting. By the way the Ed Pysch cannot officially diagnose, this will have to be done instead by someone like a developmental paediatrician. The Ed Pysch may make a recommendation that she is statemented (she would receive legally binding extra support in school for social and educational difficulties).

If your DD is not already under the care of a developmental paed (the GP can refer you) I would suggest she sees such a person asap. A diagnosis will open doors to you and her that could otherwise remain closed without one, well an official dx anyway.

She is doing okay at school currently but this is no guarantee she will not face educational and social (the big problem here) the higher up she progresses through the school system. There are problems already apparant with socialising with other children; these difficulties will become more apparant and some children can be bloody unforgiving at someone who is "different" to them and who cannot abide by the unwritten rules governing friendships and playtimes. The unwritten social conventions that schools have could cause her great distress; distress that becomes internalised only for all her frustrations to be taken out on you at the end of the school day.

Would certainly consider getting an official dx through the developmental paediatrician. With this in place I would look into obtaining a Statement from your Local education authority (and do not believe school if they say she won't get a Statemetn because she is too academically able; these are also for social and communication difficulties).

I agree totally and completely with Atilla. Whether you identify it or not, if your daughter has Aspergers, she has aspergers. The difference is that lots of her behaviours will be seen as being 'difficult' 'stubborn' 'immature' or 'truclulent' rather than being as the result of an environment that she needs help to manage.

I understand your reluctance but I wish I could go back in time to help my girls in the way you now can.

DD1 did the classic girl with Asperger's thing and hid it until she could cope no longer when she started high school. She is now out of school because they have no space for her in the provision she needs. It will take til at least xmas to get her a statement and in the meantime I am educating her as best I can.

DD2 is in y2 and coped ok in year R AND year 1 because she was in a small class in a play based classroom with lots of opportunities to spend time away from the other children and she also had a much older friend who babied her in the playground every single day.

In year 2 she's in a big class in a small room and her older friend has gone on to middle school. She's very unhappy, not coping in the playground, not happy in the classroom and I'm starting the battle to get her some help too.

It sounds like your DD's school is being supportive so make the most of it and get her support before there is a crisis. It's a much less stressful way to do it.

myquirkygirl- I have a dd1 who has Aspergers, she's now 6 years old, her first year at school was good, a part from her being a little over sensitive she came across as a normal child, when she started school she could read well and write. This year has not been as easy for her and her Aspergers is begining to show more, her friends are noticing that she is different and slowly they are backing away from her, she often plays by herself which is upsetting her.

Dd1 goes to a very small school (only 8-12 children per year group) and is in a mixed class of year 1's and 2's, she loves being in class and is top in the class for reading, maths and spelling but when she is in the play ground she struggles to cope with the social side, she has a lot of friends but no close friends.

Dd's school seem to be very understanding and they try to help her as much as they can but they don't always know whats going on in the playground.

Some days i think dd1 would have been ok without her dx of Asperger and other days i thank god that she has a dx so people can understand why she is like she is.

Its up to you, if you feel a dx will help her in the future (when problems may arise) then now would be a good time to start the ball rolling.

If you don't go for a diagnosis now I think you will just keep coming back to this point in the future "Is she or isn't she?". Whilst the Ed Psych can't dianose on his/her own he/she can be part of the diadnostic process.

Thank you everybody. What sort of help would she get? I have no idea what she might need, especially since actually at the moment she seems to be OK.

In your shoes I'd be applying for a Statement for your DD asap.

Anything short of a Statement is NOT legally binding and thus funding for plans like School Action Plus can be very limited (money is not ring fenced either). A Statement is a legally binding document made up of 6 parts. Parts 2 and 3 are the most important bits of the Statement as these form the main body of the difficulties faced together with the support offered to help with these. Both Parts 2 and 3 need to be dead right as these can be very difficult to change once finalised.

Have you talked to the SENCO re your DD?. If so what was this person's response?.

You need to think longer term as well; before you know it she will be in Junior school. If her difficulties become more apparant both in class and socially in the playground (which is more likely than not) some of her peers will act mercilessly towards her (they could well not want to play with her at breaktimes) and she will get into trouble with some teachers who could regard her behaviour as "difficult".

You really need to potentially head a wide variety of such problems off at the pass before it gets to such a stage. Its for your sake as much as hers because you as her Mum will bear the brunt of her frustrations when she cannot cope with the school day.

My son is older than yours and thoroughout his time at school I have seen too many children with a wide range of SEN have problems particularly at Junior school primarily because their needs have not been met.

You are her best - AND ONLY - real advocate. Never forget that.

But a statement of what needs?

I have talked to the SENCO - she has put dd on school action plus. There is an IEP in place and they are doing OT exercises with her. The SENCO is going to refer (at the OT's suggestion) to the EP and I think to a paediatrician. Really the difficulties that the school are addressing at the moment are physical, to do with her poor gross motor skills and sensory perception problems (vestibular and proprioception).

The SENCO did say that she couldn't get another person in to help with the OT exercises because that would require a statement, and that in her opinion dd would not get a statement.

So your DD is 5 years old, is in Reception, and already they are concerned enough about her to refer to an OT, an Educational Psychologist and a Paediatrician? I would be applying for a statutory assessment too, to be honest.

Your DD will need assistance, and she will need structured plans to help her cope with the school environment. How do you feel she will cope with perhaps a new teacher in September, maybe a jiggle round of the children in the classes, etc? What if the new teacher has a completely different way of doing things? THe only way to ensure consistency for your DD is to get her needs documented, and provision also, so that she has a legal right to it.

Well, the OT was on board before she started school because I went to the GP with my (and nursery's) concerns about her physical difficulties.

And it's the OT who suggested the EP because he said she seemed socially withdrawn in the classroom when he visited.

What is a statutory assessment?

I may be wrong but I don't actually think there will be a big problem with a new teacher in September or with new ways of doing things. She is apparently quite good at following instructions (not mine though ), and she really likes adults so I imagine she will be keen to meet her new teacher. When she started in reception she was full of bounce and enthusiasm. It did wane a bit as the class size increased when the rest of the children settled in, but she has coped.

You can request a statutory assessment which can be agreed or denied. If the LA agree to an assessment they request reports about your child from various professionals and then a panel reviews them and decides whether to issue a statement of special educational needs.

Hope that makes sense.

If you have a diagnosis now it would make the process of getting a statement shorter and easier if she does have significant difficulties later on. It can already take around six months for a statutory assessment so you don't want it to be held up any more than it has to be.

Myquirkygirl, "Really the difficulties that the school are addressing at the moment are physical, to do with her poor gross motor skills and sensory perception problems (vestibular and proprioception)"

These physical things, can quickly become emotional/social difficulties too and impact on self-esteem.

The school also need to be addressing things such as her social skills, handwriting, self care etc, etc and you may find once you start asking for help for these things, school wont be as helpful without a dx.

The other thing to remember is that teachers are not experts on identifying or understanding SN difficulties.

Ds appeared to be 'coping' with school and school reporting he was doing fine. He then appeared to deteriorate very quickly, when in fact he was never actually coping in the first place, school were just not recognising his difficulties.

In theory a dx should not be necessary for any child, as it should work on a meeting needs basis, but in the real world it doesnt work that way.

Good luck whatever you decide to do.

myquirkygirl - my dd doesn't have a statement and i don't feel she will ever need one, she has no 1:1 help (just a very understanding teacher), she copes well at school as the staff have done their research into AS (which they may not have done if she didn't have a dx?).

Hi myquirkygirl,

re your comments:-

"I have talked to the SENCO - she has put dd on school action plus. There is an IEP in place and they are doing OT exercises with her. The SENCO is going to refer (at the OT's suggestion) to the EP and I think to a paediatrician. Really the difficulties that the school are addressing at the moment are physical, to do with her poor gross motor skills and sensory perception problems (vestibular and proprioception)".

"The SENCO did say that she couldn't get another person in to help with the OT exercises because that would require a statement, and that in her opinion dd would not get a statement".

That second para of yours really annoyed me because you are truly being led up the garden path. Do not take any notice of the naysayers like this Senco; it is all done to stop you from applying. All this lot are doing is covering themselves. Would also ask who is actually doing such OT exercises, it may well be a teacher who is just following what the OT has recommended. Its a cheap way of doing things.

Well done to the OT as well for suggesting the EP visit - you notice the school did not request such a person to visit. They did not spot anything. Teachers are not trained to spot or identify difficulties some children present, SEN is not widely taught.

If I had £1 for every time I had read such crap comments from Senco's I'd be well on the way to pay for an aircraft seat on a long haul flight to the US!!!.

The funding attached to SA plus is very limited and she will not receive much help at all whilst on it. Its not legally binding so has no clout. BTW the IEP should be discussed with you present termly.

Would respectfully suggest you go to your own GP and make the referral yourself for your DD to see the developmental paed. This way you know its been done then, schools can delay such referrals and time is lost. This is actually time your DD cannot afford to lose.

I suggest the Statement as well as her very real physical difficulties can quite easily overlap to become emotional ones too which will affect her ability to learn. She could well find it more difficult to cope with school the higher up she progresses through the school system so you need to act now and firmly so. She is already having problems within school socially, these could well intensify as she becomes older and some kids becoming less tolerant of her. An official diagnosis will open doors which will otherwise remain closed to you.

A female child who seems to behave and is mainly compliaint within class will go unnoticed by many teachers (and your DD has mainly gone unnoticed within class). However, this does not mean that her additional needs are being met and there are no problems because they are not.

I have also personally seen too many children with a wide variety of SEN poorly managed at school because their needs have not been met by them. I feel very strongly about that, I have seen too many awful things happening to good kids who thus slip down as their needs are not being met. They can end up being failed. Do not let that happen to your DD.

She should be happy at school and thus thrive, she should not have to cope or be just "coping" with the place.

I know all this is a hell of a lot for you to take in and it is. You need to address her school life because her problems will impact on you and your family life badly particularly if it is not addressed early.

Hi myquirkygirl,

Marne's DD is very fortunate but not all children have such understanding schools and teachers who actually bother to read up on ASD and other special educational needs.

Also as the school year changes the teachers (and class) can change too. The longer term view has to be looked at; many children with AS can find both juniors and secondary school for instance a complete nightmare particularly if there is no real support (i.e a Statement) in place. The social side of things, the size of such schools, moving around classrooms often can all lead to these children not being able to cope (and they should not be expected to just cope with it in the first place).

Reception too is mainly play based; the formal learning starts in Y1 and in earnest too.

I am only writing the above to warn you what could well happen to your DD if her needs continue to go unmet by school. Do not let her be potentially failed by well meaning teachers who do not understand the full range of her difficulties.

You as her Mum are her best and ONLY advocate.

Thank you all. I will call the GP on Monday and try to get dd seen by a developmental paed. After reading all of your posts I now feel I must press on and investigate my concerns. I might be wrong, she may not have aspergers at all, but if she does I think it is pretty clear that I would be very wrong to ignore the signals I am seeing.

I really appreciate you all sharing your stories. Some of them are very upsetting and I very much hope that all of your dc get the support they need to thrive at school and beyond.