diagnosed with 'autistic traits' and transfer to secondary

[highlandspringerdog]

DD is so lovely, and is 11. She's about to go to secondary school in September. After long (2 years) and at times torturous process (sad and worried refusal to attend appointments, her dad suggesting to the docs that she just needed 'a firm hand' and there was nothing whatsoever wrong etc) we have been given a not 'no' but also not 'yes' diagnosis.
ANyone experience of this? She is definitely borderline but there are also definitely significant behavioural difficulties that really impact to a great and severe degree on the whole family. Not sure what to do. If anything.

And then - to secondary school. Anyone any tips on how to make this as easy and stress free as possible? Anything definitely not to do? My current plan is to try and speak to the SENCO in advance, set out what are the potential difficulties and what are my strategies to help DD through them.
Any suggestions?

Thanks so much for reading.

DOes she have difficulties at Primary school?
Does she get support from the SENCo at Primary school?
Does she find 'change' different?
Does she like things to always be the 'same' and follow the rules ?

She has had some social difficulties at primary school and has had support from the senco - she put in place in school counselling, a safe space to go to when it all gets too much, and there are also some very understanding and lovely teachers.

She finds change difficult, but is getting better at dealing with this - I think because I am getting better at dealing with it too. So for example at the swimming pool at the weekend, she was expecting to go for a swim but when we arrived the pool was full so we had to wait for half an hour to be let into the pool. She was a little upset during the wait, and by the time we got to the front of the queue she didn't want to go in anymore, so instead of trying to persuade her or sigh or show any disappointment or make a big drama out of it I just said that's absolutely fine you can sit on the edge (I have two other kids who wanted to go in) and I will find you some paper and a pen to do some writing. And she was happy. No big deal. They are similar in dealing with her at school - but i am not sure secondary will be so understanding. I just don't know - I am quite frightened if I am completely honest, and so I need to take charge and make sure all is ok. I'm also very open to the idea that my fear is silly.

In her Primary they recognise that she gets distressed sometimes if plans change at short notice and so the teacher will gently explain to her what is happening and so we haven't had any meltdowns actually at school - though if things have gone wrong for her - misunderstandings with other kids, or just a 'too much' of a day - sensory overload, then when she comes home she can really freak out - throwing things and breaking things, tearing up bits of paper etc, or at the other end of the extreme, lying on the floor, face in the carpet and not being able to move.

thank you for your replies - really appreciate it.

really helpful. Thank you.
What does a handover consist of?
My dd is also very superficially articulate but again can give the impression of rudeness - can be very direct.
SO far homework hasn't been a problem as it isn't too time consuming - she does it herself without me hassling her at all, but she probably only has about 20 minutes a week in total, and not all in one go, so it will be a whole different story come september.

Also, the thing is, you have a solid ground to stand on because you have a diagnosis - I don't. I'm worried the school will tell me to do one! though again, I am basing this on precisely nothing so maybe should worry about problems once i am sure they actually exist!

IME Secondary are far better than Primary when it comes to dealing with SN and having space and flexibility for DCs without a diagnosis, so please dont be discouraged.

ok,thanks. I hope so.
I rang the school a while ago before we applied, and the basic message was 'get a statement' and that was it. we have no hope of getting a statement so that is a worry. But it does seem that the school she is going to has some good solid autism expertise - they have a special part of the school for the children with asd who need to learn separately some of the time. although we won't get a place in that as there are many more kids in greater need than mine, we will hopefully benefit from the expertise there as it pervades throughout the school.

You must act and decisively so. Doing nothing is not an option!!.

I would certainly speak to the SENCO at her future secondary school asap and ask them outright how they are going to help support here whilst she is there. Secondary schools can be impersonal places and the students do move around a lot in the course of the school day.

What you are learning here if you have not already done so is that you are her best - and only - advocate.

Also acting out at home after a tough school day can also be a clear indicator that her additional needs at school are still not being met. Many children with additional needs whose needs are not being met at school fully often bottle up all their frustrations of the school day only to take it out on the nearest and dearest at home because it is safe for them to do so.

I would also now put in your request to the LEA for a Statement of special needs because of the difficulties she is facing. You do not want her to get into Y7 for her to start falling apart socially and academically (and quickly so if that happens) because the school cannot or even worse remain indifferent as to getting her additional needs met.

Have you ever applied for DLA on her behalf?. The forms are horrendous but Cerebra's guide to completing them is helpful. This is something I would also now do if you have not already done so.

IPSEA also has a very useful website www.ipsea.org.uk

"we have no hope of getting a statement so that is a worry. But it does seem that the school she is going to has some good solid autism expertise - they have a special part of the school for the children with asd who need to learn separately some of the time"

If I had £1 for every time I had seen that first sentence written I'd be a rich woman!. Seriously however, who told you that piece of misinformation; that person should be ashamed. You were lied to highlandspringerdog!!.

Ignore the naysayers. Unless you yourself make the application (use IPSEA's website) you will not know whether she will be given a statement or not (and then you appeal their crass decision if the request is not granted).

The special part of the school you mention may well only be accessible to her if she has a statement in place.

thank you so much - really helpful. But i know there is absolutely no way we'd get a statement without a diagnosis and with DD getting high academic levels (she's not a genius, but gets above average in all subjects) so the senco of her primary school and a friend who is a senco, and the ed psych, have all said we've got no hope of a statement - so i am not going to put us through it.

A different question is if I should accept the weird half way house of a diagnoses that we've got - they said we can 'always come back' to the mental health service and start the process again. which really, hand on heart, makes me want to run for the hills and seems a bit ridiculous - if she doesnt have it now, how can she have it later? I don't understand how it works.

"although we won't get a place in that as there are many more kids in greater need than mine"

Do not think like this either, the above is defeatist nonsense!!!.

"we will hopefully benefit from the expertise there as it pervades throughout the school".

Such expertise on the other hand may not at all draw down into other parts of the school. You cannot just sit back and just hope for the best here because if it does all fall apart, it does so at lightning speed.

The reason I asked about the current support you get, is because that will help a lot, if you haven't got a diagnosis (life is much easier with... however). At least your Primary SENCo will be talking to your Secondary SENCo so she will back up all you are saying and there won't be the issue of them thinking you are just an overprotective Mum.

Do you have copies of the IEPs /Care Plans which record the things the school have been putting in place for your dd up to now? (Always helps, again, to have written evidence).

However, as everyone else says, the best thing to do is to speak to the SENCo yourself, and the sooner the better - don't wait until September.
Once thing that's useful to do, is to write down all the things you notice about dd that you see as being a bit different... things you've told us up thread.... allowances you make that you don't make for your other dc. It helps focus when you are on the phone or going into a meeting..... maybe even write out a 'Profile' that you might be prepared to share with the Secondary SENCo ?

Thanks. I don't think it is defeatist, I just think it is realistic. Also there are a limited number of places in the special part of the school - i think only 7 per year - and I don't want to try and push my child in front of other kids who are non-verbal, severely autistic etc when she just objectively does not have needs as great as theirs - I think it would be morally wrong to do that and also would do my DD no good at all - she needs some adjustment, but not as much as others, but thanks very much for the tips and the direction to ipsea. i'll have a look at that for sure.

that's a really good suggestion backforgood - thank you. I think I need to write it all down to gather my thoughts, and then I'll do a letter to the senco in the next week or so, and then follow up with a phone call shortly afterwards to make sure they've got it and are going to act. It seems half the battle is how you present yourself and how your first communications are - Ive been so lucky so far - the sencos i have encountered have been nothing but brilliant and so I haven't really had to push for anything, but I can see how with a reluctant or unwilling senco / school, i could quite quickly turn into angry ranty mum and be written off as overprotective, thereby undermining everything i say to them. O the trials and tribulations! Thanks so much for your help and support anyway. good ole MN

"thank you so much - really helpful. But i know there is absolutely no way we'd get a statement without a diagnosis and with DD getting high academic levels (she's not a genius, but gets above average in all subjects) so the senco of her primary school and a friend who is a senco, and the ed psych, have all said we've got no hope of a statement - so i am not going to put us through it".

Statements are also currently given for social and communication difficulties, not just academic ones. If your DD is experiencing social and communication difficulties this will certainly impact on her academic ability and ability to learn effectively.

Many others on this board have been lied to similarly; they were also told ah, no chance of your child getting a statement. But they did receive such a document. Unless you yourself apply you will not know. You knew there was always something amiss here with DD, and you unlike your DH have been proven right. I hope your DH is eating humble pie.

The SENCO at primary and your friend who is a SENCO do not make the decision re whether your DD will get a statement or not!!. They've really put the kybosh on this haven't they; these people have done your child no favours at all. None. Deciding as well not to go for a statement yourself by ignoring these people is a decision that could well come back to bite you and hard too. They do not have to deal with your DD on a daily basis; you do. They do not have to pick up the pieces after she has had a crap day at school - you do. Think long and hard and again, I would urge you to apply even if you get knocked back.

The EP also works for the LEA so they also have a vested interest to their employers and many tow the party line on statements i.e no chance of getting one. Again such should be ignored because again you have to pick up the bits with your DD if and when it all goes pear shaped in Y7. You are truly her best - and only - advocate here.

"Also there are a limited number of places in the special part of the school - i think only 7 per year - and I don't want to try and push my child in front of other kids who are non-verbal, severely autistic etc when she just objectively does not have needs as great as theirs - I think it would be morally wrong to do that and also would do my DD no good at all - she needs some adjustment, but not as much as others"

Its an argument that is often trotted out to and by some parents but its also a fallacy.

If your DD goes into Y7 without enough support to meet her additional needs there she will crash. Times like breaktimes and lunchtimes could become huge difficulties and she may well find herself further ostracised by some other girls who will further ignore her because in their eyes she is "weird", does not share the same interests (because they grew out of those years earlier) or comes across as "rude". I do not write any of that to upset you, only to warn you what could happen.

You cannot afford to let that happen to her, you cannot just rely on school goodwill to meet all her needs because they likely will not do so particularly if it is a large secondary school. Without firmed up support her days there could become intolerable.

No need to become angry ranty mum (and as you rightly say that approach does not work. Being nice, too trusting and not challenging them does not work either. You need to put your advocate hat on and stand up for her rights to have a proper education at school. Be her advocate!!!.

ah I see, the wait and see maybe does make sense then. yes I read a lot about autism and girls, and one of the two docs who did the final part o the diagnosis process trained under judith gould so she did really know her stuff - i think i need to let it settle in my head a little longer and see if i want to do anything. it may just be that she is very borderline and so i just have to accept that though it would be maybe administratively / advocacy wise easier for me to have a straight forward label, actually she doesnt quite warrant one and i just have to work with that. I'm open to possibilities on this. I'm just getting used to the idea.

also atilla - i know you mean well, and i thank you for your input, but i'm finding it slightly overwhelming! I don't feel at the moment like i need to go into battle about this. Not every decision made by a professional in relation to a child with autism is wrong surely!

It often is, where girls are concerned. Another one here who was given a dx of 'Autistic Traits' by private assessor but NHS Paed and specialist SALT saw her and assessed over four years (yes, four) and in the end a diagnosis of ASD was given. Professionals assessing girls need to be extremely clued up on girls with ASD (and their individual presentation).

Diagnosis aside, the school SENCO at primary should be putting your dd down for 'extra transition support' as per those with a diagnosis. This is perfectly possible.

You need indeed to choose your battles with care but do not be too trusting and leave this all to chance. You would not do that anyway.

See a label yourself as a signpost to getting more help for your DD.

Your DD could well get labelled if she has not already been so by the other children if she finds the place overwhelming and or is unable to "fit in" socially with her peers.

Waiting and seeing what happens does not always work out at all well particularly in secondary school. Log everything and ensure as far as possible now that her needs in September will be met by the secondary school. Ask them now about possible access to that unit you have written of.

As Poltergoose rightly says not all clinicians are good at spotting girls on the ASD spectrum because of their ability to adapt socially (with varying degrees of success), masking and mimicry. If CAMHS are at all involved their main area of expertise or specialty is not ASD so if you further pursue a diagnosis it will not necessarily come from them.

I am sure that some clinicians out there only think that ASD is present in boys. Not all of them are very clued up by any means.

There should also be extra transitional support provided to your DD as a matter of course re her transition to secondary school. She should receive far more visit and over a longer period of time to get her used to the place. Nearer the time she should know her class teacher by name and sight as well as the LSA who is in her form class. Will her current school be willing to put say one or two of her friends with her into her Y7 class?.