Please, please help! What/where now??

[frazzledbutcalm]

I'll try to be brief but I know this will end up long! Dd is aged 11 and the third of my 4 children. I suspect some form of ASD. Some of the reasons why :-
She doesn't speak to teachers at school, only has for the past 2 years ONLY if it's school/work related.
Has a very small circle of friends and doesn't communicate outside of that.
Can't make decisions AT ALL - not even what sweet to eat first in a mix up.
Can't choose what clothes to wear.
Will only clean teeth after she's dressed, can't possibly clean them before getting dressed, .. "that's not how I do it" .. is the response if I ask her to.
Only just starting to be ok-ish about getting her hair cut.
Doesn't respond or sometimes even look at people when they talk to her, just hangs her head.
Kicks off/melt downs at some things which seem just silly.
Going out is a nightmare! Melt downs as we're trying to leave/get ready. Even if it's somewhere nice - swimming, bowling, days out.
She growls in anger/upset.
Can't cope with change/anything different/new.
Doesn't understand humour/get jokes.
Doesn't like loud noise.
She can't communicate her thoughts/feelings easily - it's like she knows the words but can't get them out. She just sits there in deep thought but nothing further.
She gets through her school day but then by goodness do we get stick when she comes out.
Many, many more .. I'll post as we go.
So, always just been told by school 'she's fine', despite not talking in school and just standing in yard if none of her friends are there, crying through special assemblies, not able to cope if they change rooms for PE etc ..
I've now done a self referral for her to be assessed with the help of the school nurse as school wouldn't refer her as she doesn't kick off in school, GP wouldn't refer her as it's not their job to do that!
Had first meeting with CYPS, they took a few details and gave me forms to complete. 1 was a conners report which I had to fill out based on when she was 4 years old! Seems daft when that's so long ago. Catalogue of errors have occurred along the way but we've now had another appointment with a 'care worker' who has said the conners report has come back negative, they sent a worker to observe dd on her last day of primary school - he concluded dd was shy at times but ultimately fine. Based on these 2 factors they've decided she's fine.??
What do I do now? It's been left that this care worker will complete a summary/thought shower type document and send to the psychiatrist who interprets the conners report, and we'll see what happens. She's only doing this at my request and she believes nothing further will be done as dd is fine.
I don't know what to do now ... I don't think it's appropriate to dismiss dd on the basis of 1 form and 1 visit in school. We really struggle with her at home and every day life.
I need help and advice please.

[Mollyweasley]

Hi! I haven't read the whole thread so sorry if I repeat things. I think if school was to look a bit closer, they might see some signs of autism. I think you are definitely right to look further. How is she with open ended questions in homework or at school. Does she tell you it is very hard? does she meltdown in homework? The fact that she can't choose her clothes could be due to the whole problem that there isn't 1answer to 1 questions which would also cause an issue in open ended problem. If you can try and link her behaviour to the triad of impairment it will help you a lot: e.g The fact that she doesn't join in with peers, could be because she doesn't know how= issue with social interaction. Does she read books over and over or watches the same film over and over: that falls within repetitive pattern of behaviour/rigidity. Does she communicate her feelings (watch her facial expression when she tells you she is happy/sad..can you tell?): area of social communication.
Also does she categorises things a lot, like organise pens on the desk before she leaves it…

I think you are right to carry on…good luck!

[frazzledbutcalm]

Hi Molly. Dd has just started secondary school, she's been there 4 weeks and have helped us more in that time than her old school did in 8 years! Her new school is being fantastic. The problem I'm having is with her assessment by CYPS. She's not good with open ended questions, definitely prefers 'proper' question = 'proper' answer. She has meltdowns over some homeworks but not all. She gets 18 pieces of homework a week! She has 4 friends, LOTS of other children talk to her, say hello and wave as they pass etc, but dd doesn't usually respond. She's very organised with her school bags/pens/books/etc. She can't communicate her feelings/thoughts/days activities very well at all. It just amazes me that professionals can say she's fine when they've never even talked to her!
Thank you all for your support.
Polter I'm going to print off girls and aspergers info and high light dd traits. I'm hoping that's a good start but not sure it will be enough. I'm hoping schools weight will count for a lot.

[frazzledbutcalm]

I've just ventured over there polter .. quite an eye opener to see others are like dd! I know that might sound stupid!

[Mollyweasley]

frazzle The open ended questions is a very big thing to notice and professional should pick up on this. It creates enormous amount of "stress" in my DD and turns most homework task into huge meltdowns, however at school she will carry on the task without showing any sign of stress, all she will tell me is that she doesn't like it. The organising of the pens is a good think to point out too (as some people who don't know all that much about ASD may see is as a stereotype thing (think of lining up cars example), and may pick up on ASD then.
My DD is "fine" at school but sometimes at home she can not even choose clothes in her cupboard and leaving the house at the week-end can cause her to have a panic attack. She will walk pass her friends from school, they say hello and I have to nudge her so she answers!
Also I wanted to add that the new classification means that Aspergers and HFA are both classified as an autism spectrum disorder but it is possible to obtain a diagnosis of simply ASD at the high end of the spectrum if somebody's difficulties answers to the triad of impairment but does not fit within the description of either Asperger or HFA. I heard that the Great Osmond Street Hospital were doing a great job with girls perhaps you could asked your GP to refer you there, also the Lorna Wing foundation takes GP's referral. You do need an absolute expert.

[frazzledbutcalm]

Polter .. very true. It's also a bit frustrating to think that my dd is like this yet we're struggling to get a diagnosis.
Molly .. The professionals aren't really doing much in my opinion. My dd sounds so much like yours! Homework can be a nightmare depending on what it is. Luckily, the SENCO rang me (about a separate issue) during one such episode on Thursday last week, I casually said oh you've rang at just the right time. She asked why, I explained about dd meltdown re this piece of homework, she asked to speak to dd on the phone to help calm her and explain about the homework but dd screamed refused to speak. SENCO told me what to say to dd about the homework, said she'd sort it with her English teacher. And that was it, job done, dd fine about doing her homework that way. The homework was that she had to write brief notes to help her with a piece of work she was expected to do the following day, dd couldn't write in note form only full sentences. Teacher had said it couldn't be full sentences only note form. Dd couldn't shorten her sentences to note form, hence the massive meltdown. Dd gets through her school day also but lets rip at home. She can't choose her clothes to wear, has massive meltdowns going out of the house. If she could stay at home and never pass through the door she'd be a very happy little girl. Sometimes dd acknowledges her friends in the street when passing if I 'encourage' her, but often she still just stares straight ahead or looks down. Would the GP refer to Great Ormond Street? They wouldn't even refer me to our local team ... I had to self refer through the school nurse.

[frazzledbutcalm]

Well I've started my diary to record dd behaviour. One such episode - school gave dd a lunchtime pass as CYPS were coming to see her for a meeting. Dd knew nothing about it, teacher gave her the pass (which would allow her to stay in the school building for the appointment) and said "here's your lunchtime pass, put it in your pocket" .... so dd did ... and kept it there til she came home .. hence no meeting at lunchtime with CYPS! I rang SENCO who said she'd ensure next time the instruction would be "put it in your pocket, take it out after your lunch, show member of staff then go to meeting"

[Mollyweasley]

that is very literal and a familiar story!
Have a look on the GOSH website, it does explain what kind of referral they take. Would you be able to consider a private assessment?

[frazzledbutcalm]

I'd definitely consider a private assessment. Atm I feel quite positive as dd SENCO is very good and helpful. She's told CYPS of the homework incident that she 'witnessed' (heard on the phone), told them how they'll see a different dd to the one at home as it's 'normal' to hold in at school and let rip at home - something CYPS told me is not true, I just read too many mis-informed websites! She's referred dd for assessment, and spoken to 2 different departments about this and what she expects to happen, and given them a date to respond, as we're now in secondary education and she feels dd has been waiting/suffering long enough and needs help now and must wait no longer. Also, referred dd to Visual Impairment Team for any help they may be able to offer. Dd wears coloured lens glasses due to sensory processing problems. She's told CYPS also that these glasses/sensory issues could be linked with asd .. so can they please bear that in mind.
If I get no joy then I will go for private assessment, but I thought this didn't mean anything in the eyes of NHS and help etc? Would I be referred to GOSH? I live in Northumberland.

[Mollyweasley]

It sounds that the school is on it. Secondary schools seem so much more tuned in than primary when it comes to ASD.
In my own experience, private diagnosis of ASD have been taken very seriously by teaching staff and health professionals, but I know this depend very much on where people live.

[frazzledbutcalm]

Dd had her meeting with CYPS at school on Wednesday. After the fiasco with the lunch time pass last time , SENCO collected dd and brought her to the interview room, sat and had lunch with her, talked to her then the CYPS lady eventually arrived. She gave dd an a4 bit of paper split in 2 sections. Dd had to list on one section what she's good at and on the other section what she struggled at
SENCO helped dd, suggested things to her and dd put them in the appropriate place on the list. I'm not convinced this is going to give them an insight into dd!
What's an ADOS test? SENCO has requested this so we're just waiting. What do they do? What does it show?