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.

highland - not wishing to hound or overwhelm you BUT I am in a position of applying for a statement for my DS in Y7 who has HFA and anxiety. DS didn't have any real support at primary (only diagnosed in Y6) and managed reasonably, but despite our efforts in choosing a school that we thought would meet his SEN (a local 'outstanding' comp) it hasn't 'worked out'.

I was really struck by what Attila has said about things falling apart quickly. DS had some difficulties in the first term (some teasing, worries about rugby-playing, a misunderstanding with a teacher) but these were seemingly 'sorted' and DS was working well, was making friends and had joined clubs. It all fell apart at the start of the Jan term when it seemed that DS was just overwhelmed by all the effort it was taking him to deal with a school day. Within the first month DS had gone from full time, to reduced timetable to an hour in the library to being unable to get into school at all. DS hasn't been in school for 3 months now... So though DS is in theory 'high functioning' he now has very significant SEN to the extent we may be looking at a specialist school.

Though I have to say that I would never have considered him a 'candidate' for a statement when he was at primary. And DS is academically very strong - mostly level 6 for KS2 SATs but that hasn't had any relevance to his ability to make the transition to secondary. But I know that it is likely to be a battle to get him a statement, but now I feel it is a battle we have to fight. (And out-of-school 'medical needs' provision has been appalling - DS is still waiting for the LA to put home tuition in place.)

I wouldn't be happy with your 'borderline' non-diagnosis, and at this stage I think I would pursue that, because I think it is unacceptable for you and DD to have to 'wait and see.' We had this with my DD (9) who now has a diagnosis of HFA. DD also has selective mutism and as she was proving 'tricky' to assess, the clinicians decided (having started the assessment process) that they would wait and see if her SM improved first. We wrote a 'firm' letter to the service and they backed down and 6 months (!) later they completed the assessment and DD got her diagnosis. (Luckily from a paed who was experienced at recognising autism in girls - DD didn't actually score 'highly' enough on the assessments, as such but the paed stressed the importance of the overall picture.)

I would be concerned about the effect of the transiton to secondary when you say that your DD's behaviour is already having a severe effect on the whole family.

My dd is in year 7 and went with basic support e.g. meet and greet and safe space and awareness of her. She completely emotionally collapsed by Christmas and is now on medication and distressed to the extent that noone knows if she will stay in school. Noone here wants to scare you or overwhelm you. With hindsight I wish I done more, fought harder, got support and not listened to those who said she would never get statement. Good luck.

My Dd3 was diagnosed with Asd when she was 9 after 3.5 years of assessments. It was exhausting and soul destroying at times. But we knew that she needed the dx in order to get her needs met at school. It hasnt been an easy journey but she is now being assessed for a statement. We went to tribunal and it was her Asd diagnosis that made the panel over ride the LA decision not to assess her. They said that despite her high national curriculum levels she was clearly struggling and needed lots on interventions at school and based on the fact that she has a disability they ordered the LA to assess!!

Do not believe anyone who tells you your child doesnt meet the criteria for a statement. If she needs support at school over and above what most children her age need then the current sencop says she probably should be assessed!

Good luck what ever you decide

I see. thanks very much all. lots of food for thought.
I know no one wants to overwhelm me! but this is the effect of someone telling you you are talking defeatist nonsense, that something you've said and believe t be true is 'a fallacy' etc, that friends and teachers who I know to be very well meaning 'should be ashamed' etc etc. But i know it comes from a good place - i just don't like it.
[sunshine175] - what was your dd like generally? how were home and school before she got to secondary? if you don't mind me asking! i have nothing to compare dd to - i don't know any other children with autism who are at secondary school, only in primary.
thanks

sunshine, I am so sorry to read about your Dd

That is exactly the reason we are fighting so hard to get my Dd3 a statement in place before she moves up in september.

I really hope your Dd can recover and continue to be at school, if that is the best place for her.

My Dd3 already school refuses and as she has got bigger it has become impossible to get her to school if she says she isnt going.

Sorry for the hijack OP.

I do not want to overwhelm you either and what I write comes indeed with good intentions attached.

Well they should be bloody well ashamed if they are actively telling you that your DD has no chance of getting a statement. Who are they to tell you that?. The LEA make that decision and if they say no then this decision can be appealed. It is bloody hard going I grant you that but I reiterate that you are her best and only advocate here. You are truly best placed to fight her corner for her, they won't necessarily do that.

I made reference to your comment earlier:-
"although we won't get a place in that as there are many more kids in greater need than mine"

How do you know?. You do not as of today anyway.

I am fed up to the back teeth of good people like yourself being lied to by people who should know better. They do not act in either your interests or hers, their primary concern is not the child. They also do not have to pick up the pieces of their failure; you do.

I admit I have come across quite strongly here but it is really stated with good intention (my son is now in Y10 and has a statement). Some of his peers did fall apart in these earlier years of secondary primarily and mainly because their additional needs there were simply not met. Also some teachers showed a complete lack of understanding when it came to the whole gamut of special needs. Many of these children as well were failed by their primary school who failed to act on their additional needs.

Good luck with whatever you decide to do.

I am fed up to the back teeth of good people like yourself being lied to by people who should know better. They do not act in either your interests or hers, their primary concern is not the child. They also do not have to pick up the pieces of their failure; you do.

Yay to that attila.

So sorry to read about your DD as well Sunshine:(.

Yes Im happy to talk about dd especially as I don't want anyone suffering as we are. She never out grew two year old tantrums. Lots of sensory issues with touch and clothes and never fitted in socially. Sort had friends but never invited around to play or if invited only ever once. She is academically able. School said she was fine but anxious. Got worse in year 5 and school noticed more issues. Started to struggle with teacher changes. More outbursts at home. Didn't want to go in to school but we kept her going.

She was diagnosed at 10. I worried so much about transition. They listened and did extra visits and she met staff there. She arrived at school but couldn't cope with noise,numbers, constant changes. They thought she was coping and didn't listen until she stopped eating, sleeping or going. Medication, therapy, more meetings than anyone can imagine later she is managing about half her lessons and we are trying to figure out the best future option for her.

Girls are different, they can hide at school and hold it together. dd couldn't hold it together at home - it was a sign she wasn't coping at school. She is so anxious now she needs me all the time to help her anxiety. Your gut is telling you that secondary transition is a concern. Do listen to it. Arrange to see the senco and get current school talking to new school. I do hope this helps you. DD needs more individual support at secondary than I imagined to be able to cope in school.

Please don't give up on a diagnosis. Ask if anyone specialises in girls in your area and rest lots. There is a growing number if books about and and girls - it has helped me so much.

If the current assessment team can't give a diagnosis you can ask them to refer to a 'specialist' diagnostic centre - I know Great Ormond St has one. It really isn't acceptable for you to have been left with a 'not no' but 'not yes' non-diagnosis. We were sort of in that position with DD - we did the parental ADI interview with the pead who reported DD was showing 'typical' features of girls on the autistic spectrum, but then they wanted to put the assessment on 'hold' leaving us in non-diagnosis limbo!

Sorry to hear about your DD sunshine - my Y7 DS is also now on medication to help with his anxiety. His psychiatrist is clear though that the medication won't 'solve' his difficulties in school - she says he may need a different setting. At the moment it is a 'waiting game' until the medication at least helps DS think a bit more clearly and he is well enough to start thinking if he can manage go back, or to consider a new school.

I would completely agree with Attilla and the others OP,It is absolutely not acceptable to have a diagnosis of nothing except 'autistic traits'.Your description of your dd is typical of a lot of our kids on here with asd/aspergers.I think given the age of your dd it is vital that you get a diagnosis for her by going privately if you can...it will be money well spent.My own dd is now 16 and was only diagnosed with Aspergers a year ago whereas my ds,14 was diagnosed at 9.It is completely different with girls... far more subtle.
You would be very well advised to go elsewhere for a diagnosis and it will open so many doors for your dd and will enable her to access vital support.Secondary school is a huge change and the transition can be very tricky if not planned properly.Without a diagnosis your dd will find it far more difficult to access the correct support.
Sorry OP to be so harsh but the advice on here from the likes of Atilla and co. has proved invaluable for many including myself over the past few years .It is good advice...you should take it on board for your dds sake.

thanks so much all. i really appreciate the info from every one of you. I will continue to think about it with all your advice in mind.

My daughter has autistic traits as a diagnosis also but its been ok though as she also had Severe communication disorder and dyslexia diagnosed. The difference at secondary is frightening. the social problems are immense and those on the spectrum are at a loss. The anxiety can be immense. I fought hard for a statement and got non maintained special school without the ASD diagnosis and she loves it there. I fact as the school is now not really taking children with ASD any more the fact she never got a full diagnosis is fine. She is in the best school for her and is happy at this stage she would not benefit more .If when older it is necessary I may ask again as I believe she has ASD and it is known she has learnt to cope at school by hiding her difficulties. It is just too hard at a large mainstream if correct help is not given and the social problems are the most soul destroying for our children. I was also told she would not get a statement and I know county tell everyone that. Severe Speech,language and communication disorder is the main reason for her statement now despite ASD tendencies. Has your daughter had any other tests?
My daughter only got diagnosed in year 6 ( I was extremely surprised at the severity ) and up until then she was just left to struggle .

Good luck and just keep an open mind on assessment if needed later.

Another one here saying try to get a 'proper' diagnosis that accurately labels the issues (NB: NOT the same as labelling the dc).

Even if it just says 'autistic traits' or 'suspected ASD' it will help. Without a decent 'problem formulation', when/if secondary falls apart, she will be labelled a naughty dc and you'll be labelled an over-controlling mum.

Thank you all!

I've now actually been able to speak to the SENCO at the secondary school, who was very reassuring and lovely, and agreed with me that the kind of limbo diagnosis was not helpful. She asked me to go back to the psychologist who did the diagnosis and ask for her to recommend DD have speech and language therapy - from my description of DD becoming distressed and angry very quickly in conversations at home (though not at school) if things are not clear, and that often she misunderstands - finds it difficult to conceptualist situations or chains of events that require thinking beyond a quite literal level - the senco said she thought speech and lang therapy would be great, that school could provide that on site but that recomendation of that from the psychologist would help, so I went back to the psych. She said she has no basis on which to recommend this and so no, she wouldn't. I tried to argue with her, well not argue, but persuade her - said I agreed with SENCO, I live with my DD all the time and really think she would benefit as she has difficulties understanding things like this, psychologist said no, DD's dad has a different view of her to me and I could come in and discuss the reasons she wouldn't recommend speech and lang therapy with her if I wanted to but she wouldn't change her mind.

Brilliant.

DD's dad sees her about once a week, never has to take her to school, get her up in the morning, persuade her to dress / wash / eat / sleep, never has to do anything with her really, and still finds himself dealing with a very upset and distressed and angry poor DD - who has recently said she doesn't want to go to his house anymore - so the psych, in all her wisdom, has clearly been influenced by DD's dad who doesn't even live in the same country as her all year round!!

I got a taste of the battle you have all been telling me about. This is very difficult isn't it. Feel like grabbing my kids and running for the hills! I won't though. I'll take a deep breath and get the hell on with it.

No it's been NHS all the way. It wasn't a referral we were after but a recommendation- in the letter explaing the conclusion of the diagnosis process they set out one recommendation only. The senco said it would help my DD get access to the SALT at school if the psychologist recommended it. The psychologist said that only the school could refer and they didn't need her recommendation to do that. And that she wasn't willing to give it. I don't think it is a barrier to DD getting SALT, but it was a bit of a slap in the face and made me realise that actually it isn't the case that all the professionals agree with each other, nor that I find everything they say to be acceptable.

She's had a CAMHS assessment - referred by school in Year 4, supported by me, we had a series of screening sessions with one psychologist who was absolutley wonderful, who also completed the cambridge questionaires with us and with school and took info from school, she referred us on to the next service which I think was further screening - we were told this was to find out if we needed to be referred for a full diagnosis process and that lots of people are 'screened out' at this stage - so not the diagnostic team - who said after seeing DD once (of a possible 6 sessions) that she didn't need to see her again, so sure she was that she needed to go on to the proper diagnostic team, and whilst neither of those two actually said it to me, it was very clear to me that they thought DD had autism.

And then the diagnostic team of 3 - one who met with me and DD's (dickhead) dad separately, one who met with DD (once) and one who observed DD at school (once). From that they concluded that I identified difficulties in all 3 main areas but DD's dad only identified difficulties in 2, that DD displayed some traits but at times could function pretty well (this is correct - a lot of the time - esp at school - she is fine).

I don't even know where to start with getting a private diagnosis. Or accessing GOSH when we've been through the process on the NHS once already - they did say to us we could do it all again if we felt it necessary though. I just find it so weird.

In many areas you can self refer to Speec and Language. Why dont you get their phone number or email address and ask them direct if they will assess your Dd?

My Dd3 has had 3 complex communication assessments, 2 of which helped towards her diagnosis and the most recent was to help with her Statutory Assessment and transition to secondary.

I triggered 2 out of 3 of those assessments by emailing the Head Therapist in my area. Sometimes you have to try these things.

Also go back to your GP and ask for a referral to a developmental paediatrician who has a knowledge of girls on the spectrum and an Occupational Therapist who can look at motor skills and sensory issues.

Good luck

Tbh, if say the disagreement between you and ex-DH is more (not less) reason for a proper second opinion.

Point out how important it is that you both feel the assessments have been thorough, and can both agree on what is (or isn't) wrong.

Any dc, never mind one with traits/ ASD would be confused with ex+camhs take one view, mum+School take the other.