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

[lougle]

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

Tbh, I think you'll be pushing against an open door though. It all sounds very obvious and textbook.

When you say DD is compliant, what happens in the classroom when one of her difficult tasks like the Fiction-based stuff is required? DS1 is on the passive side, but there a couple of formats that push his anxiety over into distress and out and out refusal, needing to leave the room and the work being adjusted to a way he can complete it.

I'm always surprised that DS1 is viewed as needing so much additional support as he does quite well academically. We stopped claiming DLA for him when his preschool award ran out age 6ish. But even the EP, who refused to actually meet DS1(!) reviewed the school and specialist teacher reports, told me that if any support is removed as part of the EHCP transfer I should appeal it. He actually said there was no way that would happen but of course wouldn't put it in writing!

I think she just doesn't produce work when it's hard. The teacher had noticed that she'd done an acrostic poem for her homework, did a spontaneous acrostic poem at home to take in to the teacher, using the teacher's name, then chose to do an acrostic poem for her literacy task in school. I laughed and said "1. It has rules and she's learned the rules. 2. She's worked out that she can't get it wrong as long as she follows the rules. 3. She's worked out that she only has to write a few words in a line down the page and you think it's marvellous."

I think you're right. I need to man up. She is text book. Yesterday, when the teacher said 'if she does have ASD, I've seen a lot worse...' I had to resist the urge to say 'were they all boys?'

The teacher is saying that she needs lots of reassurance all the time. Even a simple instruction to stick a piece of paper in the first page of an exercise book has DD2 seeking confirmation 2 or even 3 times before doing it. The teacher had typed 'is she not listening? Is she distracted? Does she not understand? I don't know...' She says that she's now behind but it's hard to make progress because DD2 gets so distracted in the class environment and is slow to produce work.

But not producing work isn't compliant is it? I don't mean that to be as arsey as it sounds, but the higher up school she goes the less tolerance will be given. DD is entitled to reasonable adjustments, but from the way you describe her, having a professional report to wave under noses will make that easier.

And it may well trigger meaningful additional support - my good Frenemy the EP actually made good and easy for the school to integrate suggestions over DS1's work producing difficulties.

She's incredibly anxious all the time. She gets anxious because her best friend is also friends with a boy who likes her friend more than he likes DD2. He makes up games that DD2 doesn't 'get' to do with Minecraft (which DD2 does get) but all she wants is to be an Allicorn (it's some horsey/unicorny type being) and his game doesn't have Allicorns so she doesn't know what to do.

She kicked her best friend last week in class, because she didn't comply when DD2 asked her to play a game on the computer with her (she was already part way through a game and had said that she would play once she'd finished, but DD2 thought she was taking too long and she had asked several.times). The teacher decided that the friend was being melodramatic and that DD2 can't have meant to hurt her...but she did.

She gets up in the late evening (23.00 etc) to discuss what's worried her about the day...always stuff about people saying or doing things she doesn't understand. Jokes she doesn't get.

It all goes on.

You're right. Not producing work isn't compliant. It isn't that she doesn't want to, but her pencil grip is awkward, she finds writing so tiring, she isn't even consistent with size. Doesn't use full stops, capital letters, finger spaces....that's the level we're at.

It's unlikely that any kid will get to the stage of being put to the assessment panel (or equivalent else where) & not end up with some forms of diagnosis. They just don't put kids forward for that unless they show alot of symptoms because it's not cost effective. The primary interview & parental forms are relatively laid back to deal with, I stress relatively.

Ht support is great to be going forward with. If I was you I would add gp support- ask your gp service which gp has experience with girls with autism and transfer your dd to them. And then ask them the same with regards to salt & ot & pead. Dunno if it is exactly the 'tight' way to do it but the fact we sought out a gp with experience in adhd & asd who then also believed us and backed us up has paved the way with hcp

Asides from the Fiction-based stuff, DS1 has a very similar profile and no one doubts his dx of ASD. And he is statemented.(25hrs support).

If there's those types of issues with handwriting ed psych & ot assessment would be worthwhile, &,obviously ed psych is through school.

The not producing work actually reminded me alot of me...... I did very well academicly but the things I didn't understand I simply couldn't get so couldn't do, it's a perceptual thing, I couldn't imagine how to do that. I've had it put down to my organisation deficitist from my dyspraxia, & my procrastination from my adhd, but now I have kids awaiting pda assessment i identify more with the avoidance of pressure. Point being it might be worth looking at what co morbidity could be ecaserbating that problem (or others) because it's common to have more than one neurodevelopmental disorder & they are assessed by different professionals (some health care, some educational) so even if one may dismiss you having back up of others help & one diagnosis of a ndd makes it easier to be taken seriously for others (generally speaking).

Lougle DD had her 1st CAMHS/paediatrician assessment today. Paediatrician (who was lovely) said he had no hesitation in taking it to the next stage as she was 'displaying behaviour consistent with a Dx on the autistic spectrum' & he thought she needed significant support. I think this is their 'screening assessment' after initial referral to get to next level. Your DD sounds so much like mine (she kicked in school last year too). He also said DD was delightful (which she is) & was keen to focus on her strengths as well as her difficulties. I am on emotional spin cycle right now and can't quite figure out how I feel. But I think we're going in the right direction- DDs anxiety is crippling.
I send you and and virtual hugs x

Ohmuther I hope that you're ok.

I have found out that I can refer direct to CAMHS in my area. I don't need a GP/Paed referral. Does this sound ok for the 'medical concerns/reason for referral'?

"Reasons for Referral –
Since before age 3 we have noticed ASD traits in Jasmine. Obsession with laying a blanket flat across a dolly, then fury that it wasn’t flat. Only wearing 3 buttons on a skirt. I had to teach Jasmine eye contact by practicing with the road crossing patrol lady: “We look at the lady; we smile; then we can look away”. All preschool photos are of Jasmine playing by herself. She had no interest in other children. Preschool dismissed as copying behaviour of older SN child.
• School 1. Fell apart in transition from Year R to Year 1. Distress at change of classroom layout; change of colours of tables and chairs; change to cursive writing from print writing. Fevers, sickness, anxiety, prolonged absence with intermittent returns – more fevers/vomiting. Referral to Paed who referred to SALT and OT. Transferred to school 2.
• School 2. Initially settled in year 1. Lots of scaffolding from teacher. Fell apart in transition from Year 1 to Year 2. Distress at over literal interpretation of whole class instructions; friendships/lack of; inability to cope with loud classroom noise – complained of hearing road traffic outside of classroom. School 2 tried withdrawing for nurture group. Seen by SALT – ‘mild pragmatic language difficulties’ to be managed by school. Seen by OT: Very low centiles for some areas, very high for others, so ‘average’ overall. Sensory issues. Anxieties escalated. School refusal began. We withdrew her to Home Educate for one term.
• Home Education: Anxieties dissipated but hard to motivate her to do anything other than her fixed interests. Refusal to try any intellectually difficult activities.
• School 3: We found a small (100 pupil school) for the start of Year 3. She has been there ever since. Virtually 100% attendance. Now in Year 5.

Reason for referral:
• School feel they are supporting her currently, but Jasmine will struggle in Secondary school.
• They are noticing gaps in knowledge and skills that were previously thought to be secure.
• They have noticed exclusive friendship with one child. She finds it hard to make relationships with others.
• Constant need for reassurance with work (e.g. ‘stick this paper in the front page of your book’ results in ‘stick this here? In this page? Here?’)
• Finds change difficult (e.g. change of classroom, change of teacher)
• Slow to produce work – distracted by surroundings.
• Can learn things by rote but not generalise (e.g. can chant a spelling but then spells it incorrectly in written work)
• Inability to cope with fiction tasks – has latched onto acrostic poems as a ‘safe task’ that she can do.
• Anxiety
• Literal thinking
• Has started to physically lash out at her friend

At home we notice:
• Literal thinking – We have to teach her everything specifically for each situation.
• Can’t cope with metaphors or similies
• Inability to independently get ready for school – requires constant prompting and reminders
• Anxiety
• Violent outbursts at her sisters – justifies her actions as ‘they should have known how I’ll react’
• Inability to see things from another person’s point of view
• Can’t cope with change in plans – sees it as a broken promise
• Dislike of certain textures – food choices becoming more and more limited.
• Fixations on certain books (Percy Jackson, horses and puppies)
• Inflexibility
• Wants to be friends with children but doesn’t understand their jokes, or why they find things interesting that they do – feels too shy to talk to them.
• Won’t sit near unfamiliar people at social events (we have to ask them to ignore her so she can warm to them at her own pace)
• Initiates conversation but doesn’t wait for a reply before drifting off into her own thoughts
• Inattentive
• Obsession with watching programmes on her tablet…have to take it away.
• Doesn’t respond appropriately to normal social gestures. E.g. ‘I love you, Jasmine’ gets no response or just ‘huh’…she only shows affection on her own terms.
• Frequently sucks her hand and goes into a ‘dream world’
• Constantly complaining of ‘travel sickness’
• Can’t cope with homework tasks that involve abstract thinking. E.g. ‘Describe the character’ is met with ‘I don’t know what they look like because I’ve never met them!!’
• Fears and worries at night – often up at night with anxieties
• “Feels like she shouldn’t even be a person” and “Feels like she’s weird’

Is it too much? Have I missed things? It's so hard to put it on paper sometimes.

That's great lougle

Emailing directly when GP referral failed is what got me a choices referral.

Good luck.

Oh Lougle - so many similarities! but also differences too as DD has totally overactive imagination and can lapse into complex metaphors at drop of a hat like a 50 year old author! She also has reading and writing difficulties (that blimmin pen grip!) but is obsessed with listening to Harry Potter & the Moomins on audiobook.
I think it's a v thorough referral, only thing that I would qualify further is the extent to which distress, anxiety and 'falling apart' manifest themselves, as CAMHS will be primarily focussing on mental health. So for instance my DD chews her fingers til they bleed, talks about wanting to die/hurt herself, can't sleep, wakes up obsessing about me dying or the cat dying & has squawking meltdowns.
Just as a heads up it took 7 months for the first CAMHS appointment for us but we are in London and services are in crisis here. I hope it's quicker where you are.
The paediatrician thinks 4 months til the next stage of assessment .

It's a great list - may be worth adding her difficulties with imaginative play not of her choosing - (the minecraft example from one of your previous posts) if it's a reoccurring thing.

Tonight's worry: Choir

Dd2: Mum I'm really worried about choir on 11th November. You know I don't like singing in front of people? Well we're singing at Sainsburys and I don't think I can do it.
Me: Ok. Well that is 3 weeks away, so you don't need to worry now and you don't have to do it.
Dd2: But I do have to do it because I'm in the choir and all the choir is doing it.
Me: I'll tell your teachers you can't cope and you're not doing it.
DD2: It's not my teachers who are doing choir. It's the choir teacher.
Me: Fine. I'll tell her.
DD2: But she's fed up of people quitting and then coming back again.
Me: So don't do that. Just quit and don't go back.
DD2: But I think that's really rude.
Me: Look DD2, if you don't want to sing at Sainsburys, you're not singing at Sainsburys. I'll sort it out and tell your teachers how it is and it will all be fine. Now go to bed.

It's 3 weeks away!

Gosh that worrying about the solution sounds so familiar.
I've ever heard anyone else say their child is like that - Ds is.

It makes it so hard to solve anything because they can't accept the solution because they worry about the solution and how others will react to it etc.

And yes, always weeks in advance!

Is she like this when yuh try and advise re friendship/social stuff?
Ds will say "x is saying/doing this" and I'll ask how he thinks he could deal with it. Doesn't know. So I'll suggest saying or doing x in return and he'll respond with 85 million reasons why that won't work because he'll try and predict all the ways the person may respond to his response.

Yes always! The constant circular discussions about her friend A and not-so-friend B, and how B makes a game up that doesn't have Allicorns in and all she wants is to be an allicorn...so I say 'well be an allicorn anyway ' and she says 'no I can't because there aren't any allicorns in this game.' So I say 'well be something different ' and she says 'but I just want to be an allicorn' . There is no way of winning!!

They do need lots of detail. What you've written isn't too long to be an appendix- it's what you want the diagnosis-level team to see.

But 2-3 paragraphs is the max you want on a covering letter.

Because that's the longest that 'triage' are going to be interested in,
and if you get triaged away, signposted elsewhere
or allowed in -but to the wrong bit of CAMHS-
you'll have lost 6-12m instantly.

If your GP is good, I'd go to them even though they advertise 'we accept self referral'. Gives it a bit of extra credibility. And they may know what to say to tick the boxes locally.

Dear x
J is having problems in the following areas.... They affect her daily life at home to ... extent, and headteacher confirms similar levels of impairment at school. This is her third school, she's made progress with their excellent support since starting 2y ago- but previous placements made her so distressed we had to home ed for x terms .

We would like Asd assessment considered because a) has family history, b) problems seem to fit with what we've read re girls on spectrum, c) school using Asd techniques with good effect d) ffs we are experienced sen parents/nurse/ governor and we see some red flags e) school and other parents of dc with SEN have noticed her differences and suggested we seek your assistance ie it's so blinking obvious even random strangers on mumsnet want to amateur-diagnose her

I went in to school today to speak to the SENCO, but she was teaching. However, the HT saw me and said that she'd seen the referral form, thought it was great and that I should send it in. SO it's in.

I phoned the CAMHS line and they've said that within about 2 weeks I'll either get a set of forms to fill in to help them decide if ASC assessment is warranted, or I'll get a rejection letter and signposting to other services. If we're accepted for screening, then it will be a further 6 weeks or so until the initial assessment.