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Please, please help! What/where now??

(38 Posts)
frazzledbutcalm Thu 31-Jul-14 18:04:12

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! hmm
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.

PolterGoose Thu 31-Jul-14 18:27:49

Ok. It sounds like they're only looking at ADHD when what you describe sounds more like other stuff...

Have you done much reading around ASDs? It can really help to be able to demonstrate how her difficulties and foibles 'fit' an ASD to get the right assessments. Sadly, ASDs in girls often go missed. You will need to be confident in your knowledge to get taken seriously. It's not right, but it is how it is.

You might want to ask for specific assessments for specific issues, eg ask for SALT for the selective mutism, SALT might notice other stuff.

Useful books and websites - there's loads here, obviously you don't need or probably want to read it all! But there's a mix of informative stuff and practical stuff:

Girls and Aspergers

What is Aspergers

Lives in the Balance

Challenging Behaviour Foundation

Scope article on challenging behaviour

PDA Links


The Complete Guide to Aspergers Syndrome by Tony Attwood

Attwood's Aspergers and Girls

Aspergers in Pink

The Out of Sync Child

The Explosive Child

What to do when your temper flares

Too Loud Too Bright Too Fast Too Tight

PolterGoose Thu 31-Jul-14 18:28:33

And keep a diary.
And video behaviours as evidence.

Good luck and keep posting smile

frazzledbutcalm Thu 31-Jul-14 18:32:51

I knew you'd come to my rescue polter wink
I've never kept a diary and I could kick myself now sad
I think she's HFA/Aspergers.
How do I ask/demand to see professionals when everyone is saying she's fine?

PolterGoose Thu 31-Jul-14 18:45:01

I think, unless you want or choose to go private, it is always going to be hard to get a more subtly presenting child assessed. So, I would try to get GP or school nurse to refer to SALT, you've got good grounds for that and I think you'll be taken more seriously if you focus on tangible stuff. There's some good SALT stuff in those fact files I'm forever linking!

frazzledbutcalm Thu 31-Jul-14 18:59:15

Thanks polter
Both myself and dh just came away thinking 'what a load of utter shite'.
Dd now talks in school, to teachers when they ask questions or to answer questions relating to work. But this has taken until year 5! I'm not sure SALT would see her now based on this? The school report said dd is shy, quiet but will put her hand up and answer questions. She excels at maths (gained a level 6 in her SATS)!, and is fine in school.
I think teachers just don't understand the difference between being actually fine and just getting through your school day because you have to.

PolterGoose Thu 31-Jul-14 19:08:00

No, they don't. It's shit. There is a massive lack in understanding. That's why we have to know our stuff. We shouldn't have to persuade and convince people but we do.

In the meantime start using strategies that would be used for children with ASDs and other neuro/developmental conditions. It will help, my ds has made huge progress.

judogonzales Thu 31-Jul-14 22:04:45

I was wondering - if your DD is 11, will she be going to secondary school next year? Have you had any contact with the SENCO at the new school? Does she get any support at school at all at the moment?

I have come to HFA/Aspergers in girls in a slightly roundabout way: my DD (who is also 11) was referred to be assessed for ADHD last year, and ended up with a diagnosis for both ADHD and ASD. We had expected the ADHD, but were very taken aback by the ASD (which the paed was quite adamant about) as we had not seen it coming, and neither had the school, and I really questioned it. Since then I have discussed and read a lot about HFA/Aspergers in girls, and have accepted that there is something there, but we never really thought of it as more than quirky parts of her personality.

At our last meeting with the SENCO, her teachers told me that the ASD diagnosis came as a surprise to them too - she did not match what they considered the 'classic' signs, such as lack of empathy and eye contact. Luckily, she had two fantastic teachers, who went off an read up on girls with ASD and, like me, found that in fact it all made total sense. They, and the SENCO, said that they think that the ASD was well-hidden, partly by the more obvious signs of the ADHD, but mainly by her coping skills. Thing is, by year 6, her coping skills were wearing thin and she was not really coping.

I am telling you this because basically it highlights me to how easily a girl with ASD would slip through the net. I mean, I missed it in my own DD, so I am not sure how school would have ever really picked it up.

As Polter says, read up all you can. Use behavioural strategies to see whether that helps. And if you can afford it, please consider going for a private assessment for your DD.

frazzledbutcalm Thu 31-Jul-14 22:14:08

Don't know if it's usual but dd and the nurse talk privately without me and dh there, to counsel her about her anxiety. I'm not really comfortable with the emphasis on the 'it's private, mum and dad don't need to know, you don't need to tell them, it's just between us' ....

PolterGoose Fri 01-Aug-14 07:46:12

I wouldn't be happy about that at all frazzled and a nurse is not a counsellor/psychologist.

frazzledbutcalm Fri 01-Aug-14 08:40:50

polter .. she called herself a nurse in front of dd, she told me we'd been referred to her as she's an anxiety counsellor. I just don't like the cloak and dagger secretive stuff.
jud .. dd goes to secondary school this September, which makes it even worse for us time wise. She got no help at primary as I just got told every year I brought it up that she's fine. I've only spoken briefly to someone at secondary so far. She's going to a very strict secondary which I think will be great for her structure wise, but have a feeling it will not suit her anxiety wise.

PolterGoose Fri 01-Aug-14 08:49:07

No, I don't like the secrecy stuff either. I mentioned ds's anxiety/suicidal thoughts to his OT last time and I managed to bat off a CAMHS referral by describing what I do and explained that I'm using established therapeutic techniques. Secrecy is really bad IMHO. I would be asking for her qualifications and would do that for any professional whose status wasn't clear.

Do you have options for other secondaries if this one doesn't work out?

zzzzz Fri 01-Aug-14 11:56:20

Firstly the difference between HFA and AS is language acquisition. Did she talk fluently early or at the expected age? If so AS otherwise HFA. They are not interchangeable because the impact of language disorder on top of the triad of impairments is profound.

As far as secret meetings with a "nurse". Standards and understanding are poor. I personally would not allow this with ANY of my children. For example I had a teacher take aside my nt eldest daughter and tell her at length that she was just fine and didn't need to diet yarda yarda ya da. They were concerned she was underweight and might be anorexic. confused she is slim but within BMI recommendations, has beautiful healthy hair and nails, is active, has a grandmother who is 4'11 and slight (different ethnicity to her large pink mother). angry. The child is now all ruffled. And uber aware of weight etc having been totally focused on academic achievement! These people are batting way above their skill set and way outside their remit. <and breath>

frazzledbutcalm Fri 01-Aug-14 21:56:11

polter ... yes we have alternative school so that in itself is not a problem. Changing to any school will be problematic but we'll overcome it. I was hoping for a dx to get better understanding and help from the school.
zz ... I thought HFA was just the changed name for aspergers? I must be wrong and am happy for your clarity and to learn from you <bows down> smile I have lots to learn and will take all the help and advice offered. She talked at the expected age, maybe a tad late, but then she was generally quiet, shy and very very smiley and happy.
The nurse in question is an anxiety counsellor and our key worker I guess is the only way I can describe her. I just don't see the need for the emphasis to my dd on confidentiality. Dd hasn't told me at all what was said at their first meeting. 'Nurse' told us dd was starting to talk to her so she'd like another meeting next week. I'm very sceptical that dd would speak to her, it's just not how she operates. I spoke to dd later, asked if she talked or did the nurse talk ... the nurse. I asked if dd talked to answer her questions or just smiled and shrugged (this is what she does/how she reacts) ... she smiled and shrugged. So I'm very hmm at the nurse/counsellor and don't know whether to continue with the meetings. I don't want them to think I'm preventing dd from getting the help she needs.
zz .. that's awful for your dd sad

PolterGoose Fri 01-Aug-14 22:12:35

The HFA/AS distinction (for AS there needs to have been no clinically significant speech problems by age 3, doesn't mean no speech and language problems at all though) is important, but TBH the more I read the more muddled the diagnostics are getting since the DSM5 changed it's categories. It's a bit of a shambles at the moment IMHO.

One of my regular soapbox rants is that Aspergers is not mild autism. Likewise, HFA is not mild autism plus language delay/disorder. I wish the 'functioning' thing would go as it often has no relation to real life ability to function at all. There is a big identity thing around Aspergers though and lots of people with HFA end up self-identifying as Aspergers.

Rant over blush

You don't have to consent for private counselling or whatever it is.

PolterGoose Fri 01-Aug-14 22:14:45

Sorry about that, got a bit carried away!

zzzzz Fri 01-Aug-14 23:05:46

I think some older children/young adults with HFA might "pass" as AS. That is not to imply in any way that AS is a preferable dx. But ultimately there are some glaring differences between a child that is verbal struggling with ASD and a child who isn't. As polt says neither dx implies a "mild" issue.

zzzzz Fri 01-Aug-14 23:09:07

It is your responsibility to supervise/vet your child's Health care professionals/medical treatment. People who make you uncomfortable about doing that should be dealt with with extreme caution. Challenge her thinking/approach.

frazzledbutcalm Sat 02-Aug-14 09:43:49

Thanks polter and zz

We took an instant dislike to dd worker, and she did to us, mutual feeling. She made us feel like we wanted dd to have ASD, and what on earth would we do if we didn't get the dx? Said with some sarcasm. I agreed to the counselling as I thought if I said no they'd see it as me hindering dd and making/letting her be worse. You've both cleared up the HFA/AS, I truly believed the name of AS had just changed. Whatever dd has, it's some form of ASD (I believe), and in the early days I called it mild, until someone pointed out that as it's affecting our daily lives in such a way, then that's not mild.

We're going away for a few days, will post when we're back for more advice and general chit chat.

Thanks all again.

frazzledbutcalm Wed 01-Oct-14 17:04:06

Hi again. Update ...
We had meeting today with CYPS. We didn't take dd. Things have been clarified a bit .. The lady we talk to is dd care worker, she chats with us, dd and school then decides what help she needs. She was better today but did get quite snotty when we said we weren't comfortable with private chats between dd and her. I said it was my job to safeguard my daughter. She took this to mean that she was a threat to my dd. This wasn't what I meant. So the state of play is this:-

2 workers are going to have 30 minute chats with dd in school. This will give them an idea of how dd is, how she communicates, what her problems are etc. This information will then be given to dd care worker. She will take this information together with the information she already has and decide if she needs assessment and where would be best for her (ie ADHD, ASD, anxiety counselling etc).

In the meantime I've spoken in detail to the SENCO at dd new school .. she's been FANTASTIC!! We've finally got the help we need! She's putting in a referral for assessment and assumes this will be linked in with the road we're currently going down. (dd care worker didn't seem impressed with this, and said there can't be 2 referrals for dd, at best the paperwork will be just put in with everything else so far).

Will post again later tonight but all advice gratefully received as always.

I'm worried that CYPS will not see the side they need to of dd given that she's reasonable in school, gets through her day. Main problems are at home after keeping herself calm all day. When I mentioned to CYPS that some children with ASD/aspergers do this she said I read too many uninformed websites! I got the info (and much more) from a very credible link posted above wink

Ineedmorepatience Wed 01-Oct-14 19:22:25

It is her that is uniformed frazzled I would print a few articles by well known people and give them to her. Tony Attwood articles have been a great source of info for me !! It is actually well known that children with Asd/Aspergers fall apart in safe places eg, at home.

Great news that your Dd's new senco is good, it really helps when someone takes your concerns seriously.

Good luck smile

Ineedmorepatience Wed 01-Oct-14 19:23:08

Ha ha !! Un informed!! Not uniformed blush

frazzledbutcalm Wed 01-Oct-14 20:21:03

Thanks Ineed ... her senco is fantastic! She's at a really strict school, no give or take, no lea way, their way or no way, so I was really worried. But I honestly can't fault them,or thank them enough for what they've done already!
My plan is to print off and highlight dd traits which correspond with what I find. Also, starting to keep a diary which I could kick myself for for not doing sooner.
My gut feeling is that her care worker will just say nothing's wrong. I'm not sure how to demand and put forward my case properly.

PolterGoose Wed 01-Oct-14 22:14:00

You sound well on top of it all frazzled and glad you've got a good Senco, it makes the biggest difference.

frazzledbutcalm Thu 02-Oct-14 13:49:54

I must be good at masquerading polter ... as I feel I'm completely at a loss and not doing it right! I'm sure they're going to say dd is fine. I asked how much dd talked to the care worker at the last meeting. Care worker said oh she talked well. Not long conversations but she did talk and she smiled a lot, said her favourite film was despicable me. I think this translated by her means dd is fine, 'normal'. My translation of this is dd was uncomfortable. She's seen despicable me once and would just say the first film that came into her head. She smiles a lot, that what she does when she doesn't know what to do/how to answer.
Care worker said during chats at school they'd be looking for signs of shyness, anxiety, being uncomfortable ... ie fidgeting, twisting/playing with hands etc. But dd doesn't do these things when shy/anxious/uncomfortable .. she smiles and either stays quiet or says anything just to give an answer.
So, I think their interpretation of dd will be very different to what dd is actually feeling. Any advice on how to handle it?

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