Teacher says "We know DD has autistic traits, but don't get her labelled". Anyone agree?

[detoxneedednow]

Hi

Ok, long story short, DD(5) has always shown signs of asd, but school haven't noticed it until very recently. However, now they're backtracking and saying that they've always known she's different even though i've asked them so many times if she stands out and they have said no, she's just like any child

Anyway, enough's enough, wait and see stage over, i've made an appointment to see the paed.

Her teacher asks me this morning if I was really thinking about getting her a diagnosis and I explained that given the latest, I don't have a choice. Her reaction was "yes, dd is showing signs of autism, but a label is pointless because we can help her without a diagnosis. It's unnecessary." I was obviously quite stunned at this comment. She then went on to say "she wouldn't get the funding anyway?" When DD first started we had an IEP meeting as was told that because she was doing so well, she didn't need any extra support, but if things take a turn for the worse(as they have) then they have the funds available.

So, my main question is, can a child who has a mild ASD get through life without a diagnosis if school are aware they need extra guidance and support, ie social stories etc. I'm not bothered about the label side of things, because it's not like anybody I don't want to know has to know, or that she has to have AUTISM tatooed across her forehead.

Am I cynical for thinking that the only reason they don't want me to send in a paed for a proper assessment, is because they don't want to delve into the pot so to speak? Or could it really be that they don't think it's necessary because they believe she can have the appropriate support without a diagnosis?

Really appreciate any advice, experiences etc.

Thanks for reading.

Personally I would seek a dx, if she is ASD it is better that you and her other care givers are aware, as it helps explain why she may react/act in different ways. Also, just because her current school think they can deal with her, what about secondary school? Of if you move? etc. It took a Dx and a year or so of further fighting for DSs school (severe AS) to actually formally do anything on paper, although they were doing things for him before it just made me happier knowing that it was formally acknowledged.

Thanks Littlemiss. Can I ask, what's the difference between severe AS and autism. I know that AS is HF autism, but haven't heard of severe AS before. Sorry for my ignorance

I would at least get on someone's waiting list TBH.

It took 3.5 years to get dd3 dxed, girls can be very good at masking their difficulties especially at school.

As they get older, the social stuff become very complicated and some children with ASD find it very difficult to follow the unwritten social rules of friendship etc.

FWIW, no proff will give a dx unless it is warranted and you can stop the process whenever you like just by not going to appointments, they will not chase you.

For my Dd3 dx was the best thing, she is understood more now and she has started to relax and be herself at school more.

My main reason for persuing[sp] the dx was her mental health, she was becoming depressed and at 7 I didn't think that was right. Now she is not forced into situations she can't cope with, although it did need a change of school too.

good luck whatever you decide

'We can help her without a dx'
'She wouldn't get any funding anyway'

Are red flags for NEEDING a dx imo!

Its possible but rarely happens because you have no legal power to make it happen. You are reliant on a school's best endeavours.

Diagnosis opens doors to benefits, extra support and time in exams, more specialist schools and units, extra help with finding employment, extra help at college, supported leisure activities, counselling.

My LA give this advice to every single parent. We all get told only a very few children need a statement and you do not need a diagnosis of help. But if you look behind the headline 1-2% figure of children who have a statement, then actually in many areas about 60%+ of children with autism have a statement. If you think that only 15% of adults with autism are in full-time employment then its obvious that many very HF adults still struggle.

The way the whole benefits system is going if you don't have a recognised condition it is going to be very hard to claim any support as an adult e.g. even DLA etc.

You don't have to share a diagnosis with anyone you don't want to.

I have never found a single mainstream school that really and truly knew enough about asd to give advice on what my child did or did not need. I am usually the one advising them. DS has been at his current school for a year and they are only now able to come to meetings and actually understand and contribute to the conversation and there are still huge chunks about asd they do not get at all.

I was told the same thing by CAMHS. Phoned NAS and they said "the right diagnosis gives the right help".

Yes school may be able to help, but the correct help and support will only be with a diagnosis surely?

Thanks for everyone's comments.

Agnes, I suppose this is the problem with inclusion, however i'm a firm believer in it. DD's school has a lot of SN children. In her class there are a little boy with Down's Syndrome, a boy with quite severe Autism and i'd say another with ADHD. There's a lot of support, ie TA's, but obviously this is whilst she's in foundation class.

In your opinion, how helpful are social stories? I requested that they did this and they say they'll do this with DD and a small group once a week.

With the government having the clearly stated aim of slashing the numbers of children on the SEN register by 20% over the next few years NO school can promise they'll be able to continue to support ANY child without a clear diagnosis/statement. The resources and funds to help just won't be there, for those children who don't have "labels".

Another factor to consider is that waiting times for diagnostic appointments are lengthening a great deal in many areas. We waited 2.5 years for our first ADOS diagnostic assessment & the situation is getting worse.

You've nothing to lose by getting onto a waiting list for assessment now.

That school might be aware. If you have to move, then the school you move to might not be aware. A diagnosis isn't like a big "faulty" sticker on her forehead. The process helps to identify what her actual real difficulties and strengths are and can open doors to helping her.

Detox

re your comment:-

"Her teacher asks me this morning if I was really thinking about getting her a diagnosis and I explained that given the latest, I don't have a choice. Her reaction was "yes, dd is showing signs of autism, but a label is pointless because we can help her without a diagnosis. It's unnecessary."

In less than 2 years time your DD will be in Juniors and therefore off their hands. They are failing her by saying this; its all designed to put you off from applying for a statement (which I would certainly do now). Funding on SA plus is limited and not legally binding support like this is can be too easily curtailed. It may importantly not be enough to meet her additional needs particularly as she goes further up through the school system.

Re your other comment:-

"Am I cynical for thinking that the only reason they don't want me to send in a paed for a proper assessment, is because they don't want to delve into the pot so to speak?".

No, not cynical to think that at all. I think you are right. I know of another child who has been actively failed because of this above approach by school.

I would seek a dx now as it will open doors that will otherwise remain closed and any uncertainty for you is then gone. Its all going to take time but time spent now is not going to be wasted. Far better to know now than in say 6 years time when the same issues as now are cropping up perhaps with even greater frequency and intensity and secondary school looms.

You detox are her best - and only - advocate.

ds 13 has autistic traits ,some things are really noticable but most of the time he blends in.
education psychologist has a plan in school for the teachers but nothing regimented.its all about giving him the right help when he needs it.
the sens team do keep a eye on him- but not enough that we havnt encountered dangerous issues.
so he has no diagnosis but gets extra help when needed.-sometimes
the school should contact the ed psych ,who should observ next time she visits the school and if she thinks your daughter needs extra support in certain things she ll write a report that the school has to follow.

wfrances, can I ask what traits your ds has? How was he when he was in primary? When did you first start noticing odd behaviours and when did school?

boc, Attila, I agree with what you're saying, I just wish I didn't feel like I was swimming against the tide CONSTANTLY.

I would ignore the teacher's comments for several reasons:

• Individual teachers have no control over how the funding is used. She can't possibly promise that funds will be available either now or in the future.

• The teacher has already lied to you about your dd. She told you dd was just like the other children, and has since changed that to 'We've known all along that she's different."

• If you need to change schools at any point, eg moving house, secondary school etc then you have no diagnosis to take with you.

• A child's needs can change a great deal. One of mine has done well at mainstream school without even needing a statement. Due to various factors it's now unlikely that he will continue in a mainstream school.

Funding is a red herring. A diagnosis is proof of a persons legal rights under the disability discrimination act.

This protection means that she is entitled to equal access to an education as anyone without a disability and for settings to make reasonable adjustments. Her rights are protected in law.

If she has an educational need due to her disability the school have a legal obligation to accommodate this. The funding thing is not your responsibility or concern. After all, if your dd needs some 1:1 support you're hardly going to care whether this is from a paid TA or a volunteer trainee teacher!

he was born with the cord wrapped around his neck,so we were constantly checking his milestones.
started really noticing when he was about 4 months- he never cried and just seemed too placid.
health visitor was aware of the birth complications so we started the long round of specialists very early.so school, nursery all had reports on him before he started- every so often the ed psy would come in and observe him and write what he needed extra help on.-such as sitting at the front ,using black and white language,refering to him by name in giving instruction to class eg.(class line up ,and you )( and class go and sit on the rug)

his many traits include- obsessive with toys, lines everything up,
doesnt like noise or crowds, cant read a clock face, cant tie shoe laces.wont answer /talk on a phone. inappropriate behaviour eg when his mates come over ,if he answers the door and they say are you coming out he says yes and leaves or no and just shuts the door
if they ask him to go to town he says no and is puzzled on why you would just want to to walk around town/ like why do something if theres not a reason?
will not approach a teacher/anyone for help -even on 2 occasions when hes had to go to hospital.
never thinks to eat/drink -he will go untill its put in front of him.

Detox - you've really answered this question already. Your instinct has been to go to a pead and seek advice and your instinct and opinion as the expert on your dd is always right. Now, the school think they can support her without a dx or she wont get a statement even with a dx - well that's dandy but what about the next school? Go with your instinct understand what ur dealing with and then bulldoze to get the support you think she needs.
Legally she doesn't need a dx for support but in the reality she does - I had two statement requests denied and it was only when I got a dx if HFA that I got anything - goodluck

They are asking you to run the gauntlet really aren't they? To take a chance against change of teacher/ class size staying the same/availability of help and resources on any given day/ a possible deterioration in her behaviour/ her possible level of needs changing. Why would anyone do that? They are asking you to give up her rights too... Coz basically in a nutshell ,they just can't be Arsed.
God I have heard this so much recently and it makes me spitting mad!!
I am so sick of this 'scraps from the table 'approach.

Ds was actually only just over the marker for scoring for asd on the Ados test ( although in reality he just had a good day so didn't display some of his more obvious traits.) his dx is aspergers / hfa .
He has no statement but funding at level 2c which is 15 hours a week .In actual fact he has a TA in most lessons at secondary... Coz he needs it.

You are the only one with her (and only her )best interests truly at heart .

And just to add to the reasons why you should have your daughter evaluated, detox, the system is changing in a few years so that statements won't be given as they are now and schools won't be funded for SEN in the same way for children who don't have statements. I had chance to talk to our LA ASD advisor, last week and she says that, from what she can work out, the funding and help will be prioritised for children who have a diagnosis.

Sorry detox, only just got back online. DS has severe Aspergers - that is how the pyschiatrist and psychologist described it. They knew within 20mins of observing him in school he has AS as they saw so many behaviours in that time. DS talked very early, hence he has AS rather than HFA.

we don't use social stories - tbh they are too advanced for DS, but even if he could use them we would do more of a coaching and acting out scenarios rather than just reading a story about a situation.
Thats how we teach things now - we create the situation in 1:1, teach the skill and then DS generalises it to the real world.
So right now in 1:1 we pretend its carpet time (he's on the floor and the 1:1 is on a chair) and hold up a book like we were reading it to the class and DS has to pay attention, copy, sit still, answer questions, put his hand up etc (taught these individually) then when he is in class he is rewarded if he does any of these things in the real life situation - which because its noisy and distracting he finds much harder.
i agree inclusion can work with the right support, DS has great 1:1 support in school and he is really included - whereas at nursery he had untrained 1:1 and would isolate himself and not join in at all - so he was physically in the mainstream class but you could not say he was at all included.
I also find that the other children are more accepting if they understand a child has difficulties with something e.g. for DS its speech and social skills - but because we have been open about it and the other children know he has never had negative response from other children in fact most of them go out of their way to help and include him. They have become almost like a team of mini therapists around him making sure he does not get left out / left behind.
My DS is classic autism though so he has very obvious difficulties.

littlemiss, so is it always the case that if a child spoke early and has autistic tendancies, then it's AS? My dd had/has a speech delay, but she did have glue ear and as I mentioned before, the SALT's didn't agree that she had a problem with her speech. They even said she was a little ahead But she's 5 and she still really struggles sometimes to get out a sentence and when you hear her peers talking to one another, the conversation just flows, but with dd it's very much learned and stilted speech so it never really goes anywhere bless her.

Agnes, you must be really happy with your DS's classmates. They sound brilliant! In DD's class she has a boy who is rather severely autistic and I hear them encourage him to join in all the time, it's lovely to hear and restores your faith. I think with DD though, they just thinks she's odd rather than obviously SN so she just tends to get the looks and laughs It doesn't usually bother her though.

When I went to see parent partnership back in nov last year, so they could explain a few things about ds lack of support from school (even though they had brought autistic tendencies to my attention)...I posed the question of "does it make a difference if he has a dx" and she instantly said yes, she was an ex-primary school teacher(20 years) with a ds dx HFA.