Here some suggested organisations that offer expert advice on SN.

I might sound stupid, but would it be worse for DD to be assessed and 'fail' than not be assessed at all?

(61 Posts)
lougle Tue 18-Oct-16 22:51:02

DD2 is now 9. Huge back story but as some will remember, I first raised concerns re. ASD in year 1 (although notices traits in preschool onwards), DD2 fell apart in school 1, lots of illness and absence, I was virtually accused of FII, so I moved her to school 2. Saw paed who referred to SALT.

She did ok for 1 term of school 2, then fell apart in transition to year 2 and despite their efforts, couldn't cope. SALT assessed and said she had some pragmatic language difficultly but it wasn't affecting her. OT found her 'average', but with 17th centile for some things and 97th percentile for others. Noted sensory issues. After falling apart at school 2, I withdrew to HE.

HE was ok. But didn't help her to address her difficulties. So we tried again and found a small school (100 children). She's been there since start of year 3 with 100% attendance.

She's now year 5. School 3 HT recognised her ASD ('aspergers') traits early on and phrased things in very ASD friendly language (e.g. 'we know DD2 doesn't like change. We know she likes clear expectations. We know she takes things very literally...). She has now, in year 5, gone a step further and said that DD2 will struggle in secondary school and, when I asked, agreed that getting her assessed would be beneficial and that she would give written support if necessary.

I've spent so long being disbelieved that I'm frightened that I'll get her to the point of assessment and then they'll say it's all in my head sad

MeirAya Wed 19-Oct-16 00:34:36

But this time your dd's lovely HT will have to get suspected of FII too. Plus the class teacher. Which should be a bit tricky for a primarily expert-in-mother-blaming service wink

MeirAya Wed 19-Oct-16 00:36:43

I'd get cracking because if local services can't diagnose her, you'll be wanting a competent expert national tier 4 second opinion. And that's going out to tender so the quality may drop in future.

OneInEight Wed 19-Oct-16 07:10:41

The question we asked ourselves when we are at the stage of thinking a diagnosis was a possibility but not likely outcome was what harm would an assessment do. Our answer at the time was not much so we went along with it thank goodness as both ds's have really needed the support that it helped bring. In our case initial concerns were raised by school rather than by us and I think we thought that they had much more experience of kids than us so if they though their behaviour was outside the norm then we should at least investigate the possibility of an underlying cause.

PolterGoose Wed 19-Oct-16 07:37:57

I would get her referred for assessment forthwith TBH, while you've got a supportive school. I would ask the HT to please write a letter with their observations and any supports they provide 'over and above' so you've got that evidence at the start of the process (HTs leave, things change etc). Average waiting times from referral to diagnosis are 3 years so you really should get this started asap.

PolterGoose Wed 19-Oct-16 07:39:00

The last couple of years have also seen an explosion of awareness of autism and girls, it's been on all the big conference programmes and is really being driven.

Ohmuther Wed 19-Oct-16 09:09:42

OP our DD is year 4 & same position - only it was the bladder & bowel paed who suggested AS assessment (to my initial shock!!)& me who is now having to fill in the blanks for school. DD is really struggling academically & socially (though she shows up on or just under 'meeting expectations' on her scoring so schools/teachers have never seen a problem). Having read everything I can find about girls and autism I'm quite angry this wasn't queried before and I've spent past 4 years being disbelieved and fobbed off while DD has been seriously anxious and depressed.
I don't know if she'll get a diagnosis or not, but she is def a prime ca

Ohmuther Wed 19-Oct-16 09:14:36

... candidate. I'm with Polter. It's brilliant your HT is on side & your school is lovely, get a two pronged attack - school and home - and go for an assessment ASAP. Get HT to put everything in writing to them and copy you in. Start a really good filing system & keep copies of EVERYTHING in case you need it later:
Secondary is a whole different ball game.

zzzzz Wed 19-Oct-16 10:34:19

I'd push forward with the assessment too.

You are going to feel that stomach lurching throughout and when she gets dx. But it took MORE than 3 years for DS so get going.

zzzzz Wed 19-Oct-16 10:46:14

Sorry that came out embarrassingly pushyblush

What I meant was start the process of its what you think you might want now as the waiting stage is likely to take years.

I remember you all of course and my opinion is that assessment and self knowledge could help enormously because it could be built into a narrative of her life that sees her as overcoming difficulty rather than being difficult.

lougle Wed 19-Oct-16 11:30:02

Thank you all for your thoughts. It really helps. We've had homework meltdown today because she has a list of tasks to choose from. She can't do any of the fiction tasks because they involve imagination and it scares her (if it doesn't have a 'right' answer then it's wrong). She's already done the easiest non-fiction tasks. The next easiest one was to 'create a glossary of all the technical terms about the text you are reading'.

I found DD1's 'little book of space' and suggested she used that for two reasons:
1. It's already got a glossary, so it turns the task into a copying exercise (perhaps cheating but we're in desperate measures here).
2. It's aimed at 5-7 year olds so the language is simple and sentences are short (she can't stand writing for long or using words she doesn't understand).

She went into a frenzy because there were 'too many words' and she's 'not into space'. I explained that this was the easiest way to get the homework done, because the alternative was choosing something she is into, but she'll have to create the glossary herself. It's so exhausting all the time.

The school are making noises about year 5, not good enough, but they don't see the sheer effort it is taking to produce anything from home.

Ohmuther Wed 19-Oct-16 12:07:21

Lougle you completely have my sympathies. DDs last homework took 3 hours for a little drawing (which had to be picture perfect) & a paragraph of writing.

zzzzz Wed 19-Oct-16 13:16:31

brew do they see the same in school?

Sometimes it's the free fall of being at home rather than in the herd at school. If that's the case, no homework will help calm things down again.

How does she do on more concrete tasks? Counter intuitively sometimes leaving school work at school and doing something like non verbal reasoning papers at home can demonstrate to your child that they ARE "clever". Confidence plays a large part in everything.

user1471537877 Wed 19-Oct-16 13:38:21

Lougle, I've followed your posts previously over the last few years and as a mum with a now 14 year old DD who had many similarities to yours I would like to share some thoughts looking back on our path

Hardly any teachers offer help as our girls go under the radar, as you have an offer of support grab it with both hands

We didn't want to label our DD, it wasn't until we realised that labels protected her and ultimately gave us power to get the help she needed that we realised how much we needed their damn labels

Where do you want your daughter to be in 3 years, 5 years etc. How will she get there? Will labels help you to achieve what she needs.

In our case it helped us get an EHCP which funds education in a way she can cope and has turned her back into a happier person

lougle Wed 19-Oct-16 15:32:10

I'm not worried about a label. I think I'm worried that if we put her through the assessment process and then they say there isn't anything to label that she (and we) will feel even worse that she isn't coping with life.

lougle Wed 19-Oct-16 15:34:40

That probably doesn't sound right. I just don't want her to get hurt. I already talk to her about the fact that 'you've noticed that you think a bit differently to some other children' etc., which she seems to like...but she already feels so out of step with her peers, I don't want to magnify that.

MrsSam Wed 19-Oct-16 15:36:49

I completely sympathise with you. DS3 was assessed in year 5 WITHOUT the support of the school, the head teacher and teacher who had noticed DS3's problems had left by the time assessment came around and the new HT and SENCO made me feel like I was talking rubbish and wasting their time. Ultimately, when the case went before the panel for diagnosis the schools reports swayed the diagnosis away from ASD. Now we are in year 8 and going back for assessment completely backed and supported by the new school. It has already made a huge difference to the process having the support of the school. As you have a supportive HT it's certainly worth getting on with assessment. You already have a supporter who is completely in agreement with you, the HT doesn't think anything is in your head. You need this assessment and you need it now in time for secondary school. I hope it goes well.

Ohmuther Wed 19-Oct-16 15:50:51

Lougle brew
I know completely what you mean. DD identified as 'hating her brain' in year 2. Since this round of assessment started we've been saying that CAMHS, doctors etc think she has an interesting and special brain which might be the reason she finds school so hard. All the assessment is to find out if her brain is the same as other children's who find school hard or if she is the only one (which is also fine). I'm trying to do damage limitation I think.

FrayedHem Wed 19-Oct-16 20:19:29

Do you know what the assessment process involves in your area? I'm sure an Ed Psych & SALT would pick up on the Fiction-based difficulties and literalness, especially with school also backing up they are ongoing issues.

lougle Wed 19-Oct-16 21:16:54

FrayedHem I thought they would too, but the last time a SALT assessed her she said that she could see "she tended to take the questions quite literally, only giving the minimum amount of information required" and "I noticed that Dd did not always pick up on the cue that more information was required; she needed me to specifically ask her to tell me more. She did not always appear to easily interpret subtle messages given through tone of voice and body language."

She went on to conclude that DD had 'mild difficulties with pragmatic communication, particularly interpreting tone of voice and literal interpretation of language' but concluded that they didn't have a significant impact on her functional communication at present.

That was at 5.10. Now we're at 9.2 and we're still struggling.

FrayedHem Wed 19-Oct-16 21:51:09

I totally understand why you feel a bit unsure to try the system again. I had a terrible paediatrician appointment for DS1 that took me a long time to get over.

But, SALT did acknowledge some difficulties over 3 years, albeit dismissing as mild and not significantly affecting DD at that time. So assuming SALT will reassess, along with an Ed Psych assessment, I think the overall picture would be pretty clear and go along way towards a formal dx, if that's the way you decide to go. And you have the Head's support this time.

zzzzz Thu 20-Oct-16 06:46:06

Not all salts are equal. They have different strengths and focus. Can you find out who advises/works for the CIT team (nb bumbling phone calls asking for advice on best path to help direct to LA or CIT/SALT/EP can be amazingly effective wink)

Ultimately what will you be looking for as an end result for her?

youarenotkiddingme Thu 20-Oct-16 07:07:56

Id also go through assessments as it will be easier with support from school.

I understand how you feel though - I was so convinced DS had ASD that after 6 years when he was placed on list and 2 years later when he actually went through assessment I kinda panicked that 'what if computer says no'.

But lougle you've been great for DD is recognising what she needs and seeking a great school. You are great at adjusting things to allow DD to manage and all those things will be asked on assessment so they don't just look at the child.

Have you looked at the books by Barrington Stoke? They are the dyslexia friendly series but are also really good for children who struggle to read/ASD as the language is simpler but the content is age appropriate.

youarenotkiddingme Thu 20-Oct-16 07:11:12

lougle sorry missed last post you made blush

Ds came up below, then average and now above average of functional language skills. But his communication is poor. There is a communication and language specialist advisory service in our LA. They are the best people to assess and advise. LO says only available with EHCP but LA say not and school can refer. I have the contact details for my local office that may help you if you want?

lougle Thu 20-Oct-16 07:48:05

I don't know what I want blush I want her to be able to go to school without anxiety and learn with appropriate support. I want her needs to be recognised and for her not to have to have them 'discovered' by each new teacher she has (she's had 7 teachers in 7 terms since year 3). I want for her not to feel like she's not a person. That she's thick and dumb. I want her not to be made to feel that she's being slow and lazy.

I don't think she'll meet the threshold for an EHCP. Not by a long shot. She's compliant, passive, and not that far behind the curve. I just wonder where she could be with the right support though?

youare -yes I'm willing to take any numbers. And I'll look at Barrington stoke books. Her reading is actually quite a strength. But she's obsessed with one or two styles. She'll only read Rick Riordan Percy Jackson books (and then only if they actually feature Percy himself) or books about ponies or puppies. Otherwise she's not interested.

I'll try the innocent phonecall, zzzzz.

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