Teacher just mentioned autism at parents evening... what next?

[Puffinsaresmall]

Hello

DD is 7 and has always been quite rigid and black and white about things. If you say to her you'll do something later then she takes that as a 'promise' and gets very upset if plans then change. She also gets upset if rules are 'broken' and doesn't seem to understand that people can make mistakes, she can be very pedantic. I assumed this was all par for the course for a 7 year old.

At parents evening her teacher said 'I shouldn't really say this.... but erm... I think she may be on the very edge of the autism spectrum' The other teacher (dd's class has two) didn't seem that happy with her choice of words. I said 'what next, do i need to take her to the GP or ed psych etc' and this teacher was very 'No need for labels, if you want to take her somewhere then do but might grow out of...certainly doesn't need drugs... etc etc'

They went on to say that DD is very bright and the first teacher said 'yes and that's often true of children on the spectrum'.

Anyway - what do I do now? How do you know if your child is autistic? Is there anything I should be doing?

Sorry if this isn't very coherent, just got back and still a bit bemused I think.

I'm back and stressed again

Since last time I bought lots of books, did lots of reading and watching of dd too. Half of the things in books regarding aspergers are nothing like my dd and half are exactly like her. So decided to leave alone for a while and just see what happens.

Today we've been asked to attend a meeting next week with dd's two form teachers and the Head of Lower school to discuss the fact that dd is very 'stressed' at school. They've been keeping a diary apparently and want to discuss with us. Teacher said dd has not been naughty at all and is not in trouble and told me not to worry too much about the meeting (yeah thanks, I've got ocd, that'll work )

Can't really get a handle on 'stressed' but think its when rules are broken dd is getting very upset. A silly example today - she was very upset because she was wearing a mask for a school play but they'd told her to wear it on her head and she wanted to wear it over her face because 'masks are meant to go over the face' and was very upset over it. I walked in just as the teacher was trying to calm her down.

So, my question is - why do they want to see us next week? Why is the Head of Lower school coming (hes never come to any meeting I've attended before, ever)? Is this the first step to them wanting to investigate a possible diagnosis of something?

Now I know none of you are psychic and therefore can't answer my questions, but I don't care I'm really stressed and would like your thoughts anyway!

I think it's a good sign that they have kept a diary. My DS can get thrown by little things (the mask example would have made him anxious). Whether or not your DC has a diagnosis or not, I would have thought that getting a professional to help talk about anxiety (how to recognise it, what are the triggers, how it affects you body) would be a good start. Then you can think about strategies to help you DD deal with these situations (quiet room, quiet area, time out cards, visual timetable, making sure teachers give clear instructions, are on hand to clarify what is expected, five point scales and so on). If this is done properly and your DD responds then she will have learnt strategies which she can build on as she grows up and encounters new situations, transitions, changes. (This is what I hope for my DS [6] in my most optimistic moments)!

As for what they want, I imagine they are hoping you will involve some outside agency in a diagnostic/assessment process. Don't know how you feel about that, I understand a certain anxiety about big labels attached to children (or anyone elese for that matter). I think other people might say a label is more like a signpost and will enable your DD, you, the teachers and everyone else involved to learn what they can and target the help given.

The reading everything strategy can sometimes be counterproductive, too. I read so much when I was in your position that I thought my head would explode! MN is a good antidote for that!

also, sorry you are feeling so stressed.

I think you should get her assessed.

I know I always say this but it's true. - an assessment doesn't give a child a condition that they do not have. There is nothing that an assessment can do other than to confirm something that is already there (or rule something out)

If there is something-it allows for plans to be put in place to help.

There is really no reason, once there is a concern, for a 'wait and see' approach. Assess - know.

Everything you have written,reading back your posts, is definitely flagging asd/aspergers to me I'm afraid. I would say that 'stressed' is another word for 'anxiety' and this is why they want to meet with you etc. My ds,now 13, was first spotted to have Aspergers by a teacher at age 9. We had not really seen it coming at all. All I can say is his issues have got worse as he is getting older and anxiety is becoming a major problem at school. He gets very worried/stressed if a different teacher takes the class, gets completely 'thrown' by having to do things differently sometimes etc etc. As you said about your dd, my ds would only fit about half the criteria for typical Aspergers but he still got a diagnosis of Asd presentng as Aspergers. My ds also always had very advanced speech,big words etc, hates loud noise, is very affectionate,loving and sociable and extremely sesitive. I would guess that the school may be about to suggest perhaps investigating a diagnosis of some sort. Although it is hard to come to terms with, it really is the best way to go for your dd. If there is an issue ,then it often becomes worse as they get older and you will then be able to get her the support she needs. Without a diagnosis, many doors will remain closed to your dd and she may not get the help she needs. On the other hand, if there is no issue then your mind will be put at rest once and for all.
One other thing is, I think it is far better to have an assessment when they are younger rather than older. Apart from the obvious advantages of early intervention , I think it is also easier for the child to come to terms with it themselves when they are younger rather than older. Our ds was 10 when we took him for assessment and because of his age he took the dx rather badly and became withdrawn etc for a while. He is ok now with it but it is something worth considering. Sorry for the long post and good luck whatever you decide to do

Thank you Lionheart, I'm not really sure how I feel, totally

I thought originally that the teacher was speaking a bit 'off the cuff' and of course this was all wrong etc but now I'm thinking 'oh shit' Not because I care what dd is labelled as (if she indeed is labelled as anything) but because, like us all, I want an easy, smooth life for her and this just fills me with fear for her. Can you tell I've got ocd?!

Im trying to think of other examples of her anxiety:

The dog - when she gets back from school the dog can run to the door (and therefore potentially out the door, down the path and onto the road). DD is obsessed with shouting through the door 'get the dog get the dog' and screaming if the dog goes near the door. I've tried to explain that the dog is my responsibility and I won't let her get near the door but it really makes DD anxious.

Anything around breaking rules or flexibility - hates changes of plans, is obsessed with doing the 'right' thing at school. Doesn't understand it at all really - so would queue patiently at a party waiting for her 'turn' to hit a pinata and wouldnt understand that everyone else was just running up and hitting it, iyswim?

Can I ask does your DS have a diagnosis at all? Did you work out the strategies on your own or did you use books, a professional etc?

Hectate - I'm under some pressure from one of my parents to 'leave well alone' and 'she'll grow out of it' and 'you don't want to go labelling her its ridiculous' etc. I think they feel that the school will just give her a diagnosis even though actually she may not need one? I didn't think it worked quite like that but Im feeling under a lot of pressure to do nothing

Maybe part of my reluctance is also coming from me - I am absolutely terrified. Not sure why really, I just am

Belle - so is anxiety a sign of Aspergers then? I'm wondering whether there is no dianosis of on the spectrum and instead she suffers from anxiety? I have ocd and did as a child so perhaps its genetic?

Another thing that worries me re getting a diagnosis is how do you explain to your child whats happening? How did you explain with your ds? This bit really worries me.

Puffins, I know how hard it is to take it all on board initially-I was the very same. My dh was like your parents-he wanted to wait and see etc etc and my parents still dont'get' it and cant see any problems with ds .I am very glad now though that I did go ahead and get him assessed albeit with a very heavy heart.. Take time to get your head around it all and who knows, there might be no issue. Present it to your parents etc like this- "there's probably no issue with dd ,but just to be on the safe side I am going to get her assessed as it would be awful for dd if she needed some help and couldnt get it. There's probably nothing to worry about but I want to make sure". Would this work with them ? I really feel for you as it is very tough but am sending you big hugs and thoughts . Let us know how it all goes wont you?

They really have NO idea how hard it is to get a diagnosis. It is far more likely that a child who is on the mild side will remain undiagnosed.

They aren't interested in diagnosing children without a great deal of very clear evidence.

Your parents don't actually get a say in this. It's important that you remember this. This is YOUR child. Your parents are irrelevant here. You don't need their approval or consent. Or input, come to that.

If there is no issue, one will not be created so they can give her a label if there is something, then it is the beginning of a process to help her.

My mother refused to accept there was anything 'wrong' with my non verbal, smearing, yelling, no eye contact, obsessive toddler I got the whole 'grow out of it' crap. She used to say "Trust in X" (to get better and be 'normal' ) I ignored her completely. She had a prejudice about what she thought of as 'backwards', and a whole What Will They Think thing going on. imo. That's my interpretation of it, anyway. There's nothing wrong with him. that was very important. Like something being 'wrong' with him was some sort of slur on the family or something. Well, that's how it felt, anyway

She didn't tell my grandparents for years btw! About either of the kids. (both my children have autism)

I tell you this in case there's anything you can relate to in it.

Thank you both, the kindness of people on this board is staggering honestly. You're all making me feel much better (although as Belle says, with a heavy heart) and Hectate about your mum - that's it exactly. My dad loves dd to pieces and I think he sees it almost as an 'insult' to say there is possibly something amiss iyswim?

And peoples' reactions are so weird, was talking to my brother when this all started a couple of weeks back and he was 'Sounds like lazy teaching to me, just trying to label her to avoid having to actually do anything' (apologies to everyone for having to read that drivel by the way).

So I feel kind of torn. I feel in my heart that something is different about dd, not different bad, just different and that she might need help with that. Everyone around me seems to be trying to force me to ignore it and I feel guilty if I ignore them and go down the diagnosis route. I think I need to get a backbone quickly!

Crossposting here puffins-well to be honest, I never realised anxiety was a sign of Aspergers. Ds is only showing signs of it as he is getting older but he is actually feeling physically sick some days with it- I am only learning myself as I go along. I am reading loads and this board has been incredible-I only stumbled on mumsnet last year and so wish I had had it for advice in the early days. As for telling ds , I wish we had known earlier really-(how could we have missed it for Gods sake)- he was almost 11 so understood what the assessment was kindof about - and kept saying why must I be different etc?.But there are some good books for telling kids and I just keep saying things like "Theres nothing wrong with you its just that you think a little bit differently to others but there are thousands of people have Aspergers and its like some people are born with asthma, some need to wear glasses to see properly etc etc." And of course there is big list of celebrities like Bill Gates who are supposed to have asd etc. Silicon valley is full of people on the spectrum .

I would also ask your GP to refer you to a developmental pead.

I personally see labelling as purely a signpost to getting more help.
Your parents have the luxury of denial but truly they are not helping you or their granddaughter here by their outmoded attitudes and strongly held DM type views (bloody Daily Mail!).

You are fortunate that school have picked up on some issues; many schools do not. Bite their bloody hands off therefore if they are prepared to get some more support in!!.

Doing nothing is not an option; do not allow your parents to pressure you like this. You as her mother are your DDs best and only advocate here. She needs you to act.

Hectate , you have summed it up nicely-'Oh the shame of my grandson having something wrong with him etc'. This was/is us too. I just dont discuss half of what is going on with ds with my mum etc as she refuses to see it most of the time. Even dh is a bit in denial of a lot of it-he goes along with what I think etc and leaves it to me really so I am plodding along alone really a lot of the time but its ok-I will continue to do what I can to help ds.I know him better than anyone else . God us mums deserve medals dont we? You will be fine puffins-honestly -as will your lovely dd.

hahaha! at labelling to avoid having to do something.

Your brother has just shown his total ignorance.

This 'label' is the beginning of a lifelong process of Doing Something. There is support, assessments, reviews, programmes to follow, IEPs. They do not just say oh, you've got X, good luck with that, we are now relieved of any responsibility to support you in any way. What a berk!

Get her assessed. It won't give her anything! It may show there's nothing.

And you don't actually have to tell them. There is no requirement to keep them informed.

I agree with all of the others. Defintely get her assessed. DS is much happier now he has a dx. I'm much happier as he can access clubs that he couldn't before which help him to socialise and I now have an explanation for some of the things that he does that other children don't. It isn't a bad thing. She will have ASD/AS/whatever whether you get her assessed or not. By getting a dx, you are on the way to getting her support. If you don't, it is likely that the support will be less.

Lazy teaching is where they deny any SEN label in order to ensure the child has no rights and to justify low expectations by issuing I stead a 'naughty' label.

By getting a diagnosis your child has rights and protection and access to suPport.

For my Dd3 anxiety is the part of her asd that is the most difficult.

Change of routine causes anxiety,
Loud noises cause anxiety.
Seperation anxiety causes anxiety
Not knowing how to do something causes anxiety
Etc etc etc.

With the right support at school and somewhere safe to go when she is upset, she is pretty happy at school most of the time as opposed to being terrified most of the time.

I think your Dd's school are trying to help and i think you owe it to your Dd to let them.

Good luck.

It's v v normal indeed IME to be discouraged by the people around you -family, friends etc with no experience of SN from following up the medical/diagnosis route. Almost as if if they ignore the issues they will magically disappear . Agree with Hecate and others that what/if you decide to do isn't strictly your parents' business anyway. And you can go for assessment and NOT get the diagnosis, NHS doctors are beyond happy to send you away if there is any doubt at all.

bear in mind high school age as well, sounds like current school have your dd's best interests at heart, and are willing to look at her individual needs, but without getting some sort of official assessment, it is likely to be harder if she needs support at high school.

btw the diary sounds like the school are doing a v good job indeed, in terms of wanting to look at the triggers for her anxiety, rather than just wanting her to be quiet and play nicely and not bother them.

Puffins. It is hard. DS has a recent diagnosis of high functioning autism but actually his teachers started to adapt the classroom and their interactions with him before this was made official.

We did have that parent teacher meeting where the teacher says, 'He's very literal' and I knew from MN it was a code for 'Get your head out of the sand and arrange some assessments, you daft bint ...' Actually, they were quite tentative and also quite gentle in their approach. It must be one of the trickier parts of the job. I was the one who panicked!

We didn't find CAHMS too helpful in terms of moving along with the assessments (long waiting lists and all that) but they did provide a psychiatric nurse to do a few sessions with DS and the teachers on anxiety.

We had an independent Ed Psych who wasn't up to much (and cost a bomb) so, actually, it has been from my own reading, some material from NAS and the research the teachers themselves have done that we have made a difference.

As for the OCD, I know it can intersect with the spectrum. There is a thread on here somewhere where parents discuss the ways in which they are very much like their children who are on the spectrum (lots of people marvelling at how obsessively they read up on everything related to autism).

I think one of the best things the school has done is to make sure that any instructions they give are clear, straightforward and that DS isn't tying himself up in knots because he is trying to follow them in a very literal way (e.g. getting upset because his has drawn a picture before writing some words because that's not the order in which the teacher showed the class how to do it).

DS has not got a statement but the school has gone above and beyond to try to get it right. I know this is not the norm although it blimmen well should be.

Is you DD in infants or juniors? If the former, there is the whole issue of transitions ...

I'm glad that the posters on here have helped.

Ds2 has dyspraxia. A lot of the traits of dyspraxia are similar to those of ASD and he did go to social skills groups. They helped enormously and he has been able to make friends and keep them in secondary school. But he wouldn't have been eligible for these groups with no dx.
Ignore your parents. They are not responsible for raising your dd to be a happy adult, which she has every right to be.

I agree with many others, that by asking your GP (or the school) to refer you to a Paediatrician, then can start the ball rolling in terms of investigating. (There's waiting lists for everything). So many of the things you have described, do sound like HF Autism / Aspergers to me, but obviously I don't know her, and nor am I medically qualified to diagnose. The difficult or odd thing about ASDs is that, for every 'sign' you list, there will be some people, who definitely have an ASD, who don't show that sign. It's a very wierd condition - or, as the name suggests, whole spectrum of conditions.
By getting a dianosis (if she does have AS), then she will be able to access support and understanding that otherwise she wouldn't.

While things are going smoothly, no-one need ever know she has a diagnosis, but if you look at the 'mask' situation you described above - if that had been a supply teacher, or a teacher who didn't know her well, it would have come across as being 'naughty', and she would have got into trouble for it. If staff know she has AS, then they will understand that she "has to" stick to the known rules, and wasn't just trying to wind the teacher up. Your dd's teacher sounds lovely, but what about next year, or the year after, or when she moves up to secondary school ?