I am not sure I want to get my DD 'disgnosed' or have a statement for her

[brandysoakedbitch]

Honestly I just cannot see the point and so worried about labelling her. She has had probs from very early on - variously diagnosed as speech and language delay, receptive lang disorder - you name it really but no one has ever made a commitment to what it actually is that is a problem.

I took her and my older DD to see a private Ed Psych and apart from dyslexia, dyspraxia. attention deficit she also thinks she has asd - having read a lot about it subsequently and knowing her development thus far I am minded to agree. As she gets older and older she stands out more (she is 8) and going into juniors have proved hard for her. She is an outsider but when i discussed her perhaps going to a special school this idea was dismissed by the school senco and by the school ed psych because they think it would not be right for her - she is very behaved and her main problem at school is not being able to fit in - going to a spcial school will make no odds to that.

So I cannot see the point of statementing her - she is already on school action plus and gets a huge amount of input - a statement will not make her fit in and that is what she needs to do if she is going to succeed in traditional terms

The school did suggest I get her asd diagnosed but honestly what is the point with this? I know it makes things easier for them in a sense but I feel like it will pigeon hole her for her life.

Am I being an idiot about this? I am just unwilling to saddle her with an autism label forever and have people judge her on that. I am also really worried about how asd could affect her long term mental health but want to remain open minded about it.

Sorry for the rant - having a big worry about it all

No you are not being an idiot you are mulling everything over and weighing up the pros and the cons.

There is very little cons to a dx. You dont have to tell anyone, family, friends, school mates. Just the senco in private if you want to but you dont even have to do that.

Has the school suggested applying for a statement?

The bonus of a statement is that the LA can put any interventions and help in there which the school have to abide by.

There are things like social skills groups and lessons in social communication that could help your DD in encouraging her to have a go at fitting in :)

The schools can ask other proffs like SALT and OT to visit the school and discuss anything that is causing your DD anxiety and sort out help and advice.

There are more pros to me x

what social skills targets are on her iep?
what social skills interventions have school tried so far? (there are a lot of programmes etc available now)

essentially, wihtout a statement, dd is not guaranteed to get the support she does now. does she have any 1-1 support?

depending on the outcome of statutory assessment, school might get a little more funding to allow them to support her, and it will also formalise the support she gets.

do you have input from nas? if you or the ep suspects that she might be on the spectrum somewhere, it would be useful for school to know that. they can then access more respurces that might support her better.

fwiw, we didn't bother getting dd2 statemented until she was due to start school. nursery provded 1-1 etc and it was all fine. but for school age kids, i do think that if their issues are not going to go away, there is something to be said for safeguarding them/

i would also suggest you concentrate on what you think will happen with transition to secondary.

will dd cope without some 1-1 support? moving from classroom to classroom, attending different subjects (without a freindship group?)

often there are so many statemented children at secondary and so few support staff, that children on sa or sa+ are very much 'also ran'. school are aware of them, but they do not necessarily have the resources to do much for them. the support goes primarily to the statemented children.

in a smallish primary she is coping. would she cope in a larger secondary?

it will be much easier to get the stat assessment done now and in place prior to transition (and will mean that her support is in place before she gets to secondary, rather than it taking a year to get sorted if she can't cope when she gets there).

the as/asd thing is an interesting debate. most people who are vehemently anti-dx at the outset do decided that the benefits outweight the concerns, eventually. but it's v personal.

I have to say I am not sure I will be sending her to secondary at all - even with one to one help she cannot fit in so I am thinking if HEing her. I really cannot see how she is going to cope in secondary - she if friendless and that is the issue really.

She does get a lot of support right now with nurture groups. The school have a copy of her ed psych report (as well as the stuff that have cone about through the school) - She does have SALT input and ed psych input - no one could do any more. Having a statement will not guarantee the school anymore money - thye might get some but it is doubtful. I have spoken frankly to the senci and her feeling is that in reality there is no solution for dd within the state system - she is well behaved enough that she will never get funding for a private school in a million years........ she does have an extraordinary psych profile so I can see why they think this.

I am just so afraid for her in the longterm - which is why I am not sure I will ever send her to secondary - she just will not cope and I feel that the potential harm will outweigh the benefits. I am worried about her naivety and the consequences of that for her and feel i might be better placed to afford her the protection she deserves.

She does have and IEP which does include social skills - she is missing them despite the groups and she does have a fair amount of one to one too. We are very lucky, the school are moving heaven and earth for her.

I am just scared of labelling her with something that is so wide ranging. I just feel in the long term as jobs and resources become more scarce any reason to marginalise someone will be used and I could not bear all that pre judgement for her. We fortunately have access to DLA and DH and I are able to provide for her financially in the long term.

if you intend to he then there is little point really in applying for stat assessment.

will the ed psych/ senco put in writing that there is no suitable provision in the state sector? just a thought. then you can at least look towards a private setting if you think there are some that may be suitable. you know you'll have to fight for it, but nothing ventured, nothing gained.

what makes her psych profile so extraordinary? what does she need in a setting that state can't offer?

It sounds like you have a great school who are doing everything they can. I can't see the point in going for a Statement, tbh - what that effectively says is that the school is unable to meet your child's special educational needs without X (whatever's on the Statement) - and unless you can identify something the school should/could be doing and isn't doing, you'd struggle.

But some reassurance - my DS2 (13) is Dyspraxic "with Aspergic tendencies". I remember having the same concerns re High School and talking to his paediatrician about it - DS2 has always been eccentric, a bit of an oddball, struggled hugely with friends etc., but no behaviour issues and very very clever. No social skills to speak of at that stage (Junior School). The paediatrician said that actually, he thought High School is easier for that sort of child - it is so big that there will always be other children like that, and they'll find each other. And that's been true - DS2 has a lovely group of oddball eccentric geeky mates and is very happy. And the social skills have really developed massively, because he has the shared interests and the opportunities to talk about them. It's better than I ever would have predicted. So don't despair :).

Well the thing is the school that may be suitable is a long way away and I am not prepared to let that happen - she is a very little girl in the real sense and needs to be at home with her big family.

Its a balancing act - trying to stave off the inevitable I suppose.

Several people have commented on how she presents an extraordinary profile, lots of things not often seen together.

One of her major problems is that she is not a problem in a class, very well behaved, appears to go along with everything but she is just a passenger, she actually takes very little in. It is a sad situation as a few of the children have cottoned on to it now and she is taken the mickey out of a lot - they take advantage of her and have been quite cruel. Sometimes she realises and sometimes she doesn't. And this is what I mean about there being no point in defining anything - it does not change who she is and does not change the world we live in does it?

God I sound miserable but really it is heartbreaking.

Oh thank you Hassledge - my poor DD, she is so alone. Thank God we have a big family to offset that! But that does give me a glimmer of hope in all this - such a scary picture long term mental health wise and all because I can see already little tendencies that could potentially grow into something more damaging. She is such a darling and I just want her to be happy.

That does give me hope but I am frightened about what could happen to her in the meantime in a secondary setting - she is a vulnerable person and very subtly so.

And yes we do have a lovely school, very loving and trying very hard for her and have been straight with me. They said statement or no statement it will make no difference to them at all and crucially to her. There is nothing that they are not doing already that could be done iyswim

'I just feel in the long term as jobs and resources become more scarce any reason to marginalise someone will be used and I could not bear all that pre judgement for her.'

But if as an adult she is able to function at a level which makes any diagnosis irrelevant - she can just choose not to disclose it.

My DS was diagnosed with AS at 13, I have to say that the thing it's made the biggest difference to is him, he finds it easier to deal with knowing why he has difficulties in certain areas. He was aware of them and to be able to know that there is a reason (as far as a diagnosis gives you that anyway) that he's just wired a bit differently and that there are other people wired like him too - rather than him just being unable to do what everyone else manages has boosted his self esteem and confidence loads.

Hi, I spotted the mention of possibly home educating your dd in the future.

Some home educators take a similar view of not wanting or needing a diagnosis. I think it is because if the child is being cared for in a way which is suitable to her needs and abilities anyway, there is no need for any extra official wording. By home educating the parent is able to ensure the child gets as much or as little of various parts of life as suit the child there and then, without the barrier of a dx.

It might be helpful to reach out to home educating parents local to you online or in person.

In our case we only got the dx of high functioning autism 9 months after the start of home education for ds2. Having it much earlier on would have changed my expectations of the school and my 2 boys and might have been very helpful all round.

The discussion on he-special.org.uk might be helpful too. It is a list for those home educating, or thinking about home educating, children with special needs.

If she had a dx, it may well help her understand more why she is the way she is. It could help both of you. No dx to my mind means at school anyway she will be treated exactly the same as everyone else. Why are you so afraid of labelling, a label should only be used as a signpost to getting more help. Also a dx can open doors that will otherwise remain closed.

Not too surprised to see that the school pooh poohed your idea of special school; for that too she would need a statement. A statement too can help with social/communication needs; they are not just for academic needs.

SA plus is actually not worth the paper its written on; its not legally binding and the support can be curtailed. A statement would give her legal protection not currently afforded by SA plus so there is that difference to start with. That is important for both you and she. To my mind from what you write, her needs at school are not being met fully.

I can well see why you are afraid both for yourself and her but would you really be able to HE her educationally when she is of secondary school age?. Your fears, whilst both understandable and real, will not help either you or her in the long run.

To be clear, she is not a high functioning autistic person - she is about half her chronological age and has very little understanding of the world conceptually or even practically in everyday life. Having a diagnosis for her (and to be clear we already have one privately this is more about formalising it in her medical records through NHS referral) will make no odds to her at all. I cannot see what else a diagnosis would access for her service wise.

The school cannot meet her needs and cannot with a statement - neither can a special school because our provision (which the private and school ed psych are very well aware of) cannot meet her needs either. She needs t really be somewhere very creative - a bit Steiner and tree huggy to be honest (which again are a long way away from where we live) - There is also a couple of part time free schools in our area which I think will be handy in the longer term.

She does have a great deal of input re. social/communication stuff - 4 afternoons a week specifically and other more informal input too. She also has one to one for reading and maths etc. The school have no intention of curtailing it.

As far as meeting her needs in general I do not see hoe having someone with her all of the time (as this is what she needs) and being in a secondary is better than I can do at home. She is a gentle soul, thrusting her into a state secondary even with a statement is what everyone who knows her says is a bad thing. It doesn't matter how legally binding a statement is - it is not worth the paper it is written on if it is not right for a child. She does not require a secondary education in the sense of studying gcses etc, that is not going to happen - she needs life skills with her traditional educational needs met as a second.

And thanks for your support Atilla, thanks a lot. You are quite patronising, so you really think I would consider home edding a child because I was scared rather than because I thought it was a better solution for her. And yes I am capable, more than capable and certainly more qualified than the local authority to make a personal decision for the sort of person she is rather than cobbling together some compromise to keep her in the state system.

Problem you have is that to your mind you are stuck between a rock and a hard place.

Have you visited the free schools in the area that you mention?.

I was not at all suggesting at all that you're not somehow cut out to HE her when she is of secondary school age. Its no point being angry at me because that is not the main problem here; getting your DDs needs met is the real issue. School are not meeting them currently; you've stated as much.

Yes Atilla again, thanks for that. Not angry with you but your tone isn't really helpful. Thank you for pointing out that my dds future is more important than arguing the toss with you, I would never have guessed.

The free schools are part time - there is one in particular that looks interesting to us because it is focussed on art and dancing, nature and the like - like I said all a bit dippy hippy and not what I thought I would go for but she is a different person and needs a different solution. She needs to be able to express herself safely somewhere - children in secondary school have a hard enough time with this even if they do not have communication difficulties - she would be eaten alive. She is no innocent, so naive and vulnerable, how can you legislate for that? She needs to be at home and if she does receive education from another source it needs to have a different values system so she can succeed.

There is no rock or hard place as such I am just unwilling to get diagnoses for the benefit of others as it will not make any difference to her, her is just not cut out for a standard solution that is all. Do you assume that no one can provide a secondary education to their children if they educate at home?

But it matters not whether the school can meet the needs - they cannot and nor can another facility so it is now about making a solution that works for her rather than just compromising and sending her to an approximate fit to make things easier for everyone else. I think you find it hard to accept that it is possible even with a statement that certain children's needs just cannot be met - there is just not the facilities for every kind of problem and I am unwilling to compromise her to make things easier for other people. I have a lot of children, they really vary in their ability and I am just trying to respond to her needs but just cannot see the point in statementing her - local authorities design their statements to fit their provisions - that is why seeing someone privately and paying for it is helpful, they make a decision based on what they find rather than what facilities they have to cope with what they find.

Well Lenin that is what I think - yes shoehorning, that is what I feel like everyone would have me do to make it easier for them - people seem to need diagnoses for everything when sometimes I do feel that one a different day if she were looked at by a different person they would draw a different conclusion about her. I am very fortunate of course that our school are so loving and caring - their honestly has been so appreciated by us but it is a scary prospect having a child that you know will have long term problems fitting in and making their way in the world, hence us preparing for her financially etc.

Sometimes radical problems require radical solutions and I want her difference to be embraced and for her to be a confident young woman. This is when I am genuinely pleased we have a lot of children as they sort of protect her from isolation a bit as they have a lot of friends etc and she tags along a bit - I would really fear for her if she were an only because she would be very lonely.

But you said she does have a diagnosis - it's just a private one, not an NHS one.

And obviously you don't need a statement if you HE.

And if HE is right for you - great. Sounds like you're really determined to help her and to do everything you can for her.

Just not quite clear what the point of this thread is.

Is it a support thread? Or advice thread? Or a chat thread?

Brandy it sounds like you know what you want so good luck to you.

The point about the diagnosis is that it is not in her records as such - because I paid for it it doesn't have to go into her NHS records. And with the statement, the school are really doubtful if they will receive any funding anyway. It is a bit naive to assume that people have a choice about whether to reveal their medical history (not that I think that will be an issue for her as her problems are evident) - Being labelled as autistic is a big one, people make assumptions about people in this situation and it is a very very complex and wide ranging disorder. It also manifests itself very differently in girls than boys - already I have come up against many people who have no idea about that (even people involved with sn)

Not sure I had to have a point to be honest - it might even be a rant thread God forbid! I assumed I was allowed to have a moan and a rant and maybe I thought there might be someone else who had taken this course.

Is there a rant section?

You're allowed a rant :)

When will you take her out of school?

Actually I would have done it before now but we are moving to a much bigger house (I am expecting baby 5) and we will have the extra room to home ed effectively - we live in a tiny house at the mo so logistically it is impossible. We also have a three year old who starts 3 days a week at playschool in the new year so things open up a little - decided we will get an au pair when we move to help with babies and general stuff so it will make it easier for me.

We have been to see a lovely Catholic Primary in our new area and they have a lot of comm groups because they have a lot of sn children and children with english as a second lang so that might be a consideration as really what she finds hard is the social thing - she thinks she is brilliant at reading and writing (which is nice for her as she has no hang ups about that stuff at the mo) but is noticing that she has no one to play with

Trust me when I tell you I am not the home edding sort (if there is such a person but ykwim) and as someone who prizes intellectualism over a lot of things I do find the adjustment very hard to make - Being an great reader and being able to study has brought so much to my life (and DHs) and it is hard to imagine how her life is going to pan out without it.

Lenin it is not that I mind she has it - she has lots of other things besides too, it is more that not being a clever high functioning type who will manage in some way to cope (in the past i had a long relationship with someone who was HFA and terribly clever) it is more about the assumptions people make - I wonder if it is because she is a girl and it presents so differently. People around us do know the score as it has come to light and like I said she gives herself away anyway.

I think your decision is perfectly valid, brandysoakedbitch, if you are certain that your family can protect your dd for the whole of her life without any outside help or respite. If there ever comes a time when you cannot do that, it is more debatable as to whether no diagnosis for a very vulnerable person is better than some kind of diagnosis. If your dd is as you describe, I don't think you ought to be worrying about a diagnosis harming her future employment prospects, as she won't be employed without an interview and anyone interviewing her will draw their own prejudiced conclusions in any event, without the need for a label.

It sounds as though you have the solution in mind..and probably the ideal one at that:)

With regards to a diagnosis however the only thing I would say to think about..is the F word.. the future .

While as a child you will meet her needs, and hopefully into young adult hood too, there may come a time when she may need to access support services as an adult, and as with all things it IS easier with a label attached. It shouldn't, but it is. I know I'm not going to live forever.. at some point I will become too old/infirm (or heaven forbid I may be run over by a bus tomorrow) and one of the reasons that I pursued my son's diagnosis of ASD ( he also has learning difficulties) was to get his name in the tortuous system that is social services..so that when he is 20.. or 30..we can look for support for him to live semi independently. And it is less difficult..tho not easy.. with a diagnosis because funding comes in named pots to an extent.

I felt like we had forever ahead..but my son is now 14 and be legally an adult before I know it..and though I hope we can care for him for a very long time, we have made steps to label him and get his name into the local services support for the day when we cannot be there.

A long way ahead for you, but just a thought:)

To be frank I don't know why getting a formal diagnosis is seen as a negative thing. It is a signpost to access other services, if you don't choose to use them then that's up to you but you never know what is around the corner - you may need to access them in the future.
Having a diagnosis has been nothing but positive for us - DS has ASD and LD, has a statement and attends a lovely special school which is perfect for him. He has wonderful opportunities in school and benefits from such a stimulating environment - he has progressed far more than I could have hoped for in only one term - I could not have done that for him if I had decided to home ed.
It's sad that you say no school can provide what your child needs - have you visited for yourself or are you going by what others have said. Are there no mainstream schools with units that would be better suited to your dd? How are you going to help her survive in the word / make friends if you keep her in a tight family bubble? Letting go and trusting a school with your child is hard but I am so glad I did it.