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Dd diagnosed with HFA.

(21 Posts)
Handywoman Thu 13-Dec-12 19:32:08

thanks, Lisa, I've replied smile

lisad123 Thu 13-Dec-12 18:09:00

Handy you have a Pm x

woolyandtig Thu 13-Dec-12 17:20:48

Thanks for your comments, sorry to highjack the post. I was just feelin like we were on our own but now I know were not.
We r going through a ep at moment its took 3 years to get the pead to refer us. I think everyone (including my dh) thought she would grow out of it. So I kept going back and back and back..!! Finaly dd has been assessed by them which included a school visit from ep and a cognative assessment. Apparrently there is an inconsistency with how she is at school and what she is like at home. And so now we are awaiting a salt referal as her language is "unusual" (whatever that means). So we are still waiting for an answer. The ep said she does have traits but I get the impression they dont think shes autistic enough!!
School dont seem to have a clue/dont want to know unless dd gets a dx. Spoke with ct who already has an autistic boy in class so she does all the timetables/whats going to happen next already. So she does know what her day will b like but we still have battles about going to school.
So while everyone decides if shes autistic enough I still have to do battle on a daily basis. Ive just had enough of the school stress as we do quite well at home with her.

my dd is also 6 and HFA/aspergers. she was diagnosed at 3 because she presented herself to CDC as if she had read a book on autistic stereotypes and reporduced them all at each and every CDC assessment (she never behaved quite like that anywhere else) for example at just turned 2 (having stopped all speech for a year) she went to the CDC playroom took all the toys, arranged them on one chair each in a line in height assending order then she counted them. (there were 27) she couldn't/wouldn't say mummy but she could count to 27. then she screamed if anyone moved any of the toys. Diagnosis from that day on was a formality :-D

but school clearly don't believe she is autistic, her current teacher is a patronising cow who insists all her problems are completely normal and every child is like that (Does every child come home from the school talk about firework safely so scared about fire they try to strangle themselves with a scarf so that fire can't kill them???) they have decided she doesn't need an IEP or any other help/monitoring she has a physical disability as well as ASD too but is meeting their mediocre targets so all is good.....

sorry, was meaning to express solidarity rather than rant smile I think I am on the spectrum myself as I'm more than a little odd and socially awkward. I feel I get dd in a way that dh doesn't, she is sensitive, funny and makes me laugh every day, and although I worry for her as she gets older I wouldn't want to change her as she has a uniquely refreshing take on the world.

ouryve Thu 13-Dec-12 10:56:46

I know why you bothered. You're much better armed if things do change for her and she reaches crisis point.

Can you try to get her assessed? The school might be more helpful and supportive then.
Anxiety is my dd's biggest problem, like walking on a knife edge with her. She pulls her eyelashes out when she gets very stressed which makes it all x10 worse.

I have never really cracked it, I tell her well in advance about everything and try and keep calm myself which is often the hardest thing. She picks up on my worrying.

Ineedpigsinblankets Thu 13-Dec-12 08:10:50

No tips from me wooly sorry, I am having the same with Dd3 and her school is fab.
She was off ill for 2 weeks and now I am struggling to get her in every day.

I know she is ok when she gets there really and she is well looked after but it is still really hard to get out of the house.

We moved schools in the end before we got a dx for Dd3 we had struggled through the system for 3 years, she had only been at the new school for half a term when camhs spoke to her teacher who backed up everything we had been saying.

Dont give up and good lucksmile

woolyandtig Thu 13-Dec-12 07:45:57

Well im not making it up then. Girls do mask it then. Only school look at me like ive got two heads sometimes. They have only realy started listening, a little as my dd has been off due to change in routine xmas play anxiety! I feel it could have been handled so.much better as she took part last yr. Any tips on how to get her to school in the morn without feeling sick, unable to dress without a battle, refusal to get out of the car etc

Handywoman Thu 13-Dec-12 00:54:37

Ooh Lisad I'm in Herts with a dd with ?ASD (going through the long, slow process here) would like to know about any fabulous group around here if you don't mind.....

hw xxx

akaemmafrost Thu 13-Dec-12 00:25:32

I think I will tell her as I told ds but maybe in a couple of months. She is only 6.

akaemmafrost Thu 13-Dec-12 00:23:54

Oh and I am in London btw. They really are very good here.

akaemmafrost Thu 13-Dec-12 00:22:31

Thanks for all your replies. For those who asked I think the main reason things were quite straightforward was that I already have a child with autism, dyspraxia, SPD and hypermobility who is well know to their service so when I went to the GP with my concerns about dd she referred us immediately, she even said "I am not going to try to second guess you, in light of your other child already being diagnosed.". Also when I mentioned it to her teacher she agreed there were a few little observations she had made but as dd was doing well and not experiencing any problems at school it hadn't seemed to be an issue. Apparently she is very passive socially and seems quite introverted when there. I think schools are just very much of the stance "if it's not broke don't fix it" but we are lucky that all the professionals involved have been really open to moving things along.

Apparently now though, the child development team will send their findings to school with a recommendation that Ed Psych become involved but it's up to the school if they want to follow up on this hmm so we shall see.

Dd has a lot of anxieties around school and finds it difficult to socialise and I do think she is going to need help with that at some point.

I think it's very common that girls with ASC are quite conformist and passive at school but meltdown when they come out isn't it? This is certainly true of dd.

I've got two now! Someone said today "I imagine you're gutted aren't you?". I said confused "well, no, not really". It is what it is isn't it? My dc are glorious children and I wouldn't change a thing about them. Wish I wasn't on my own doing it (lone parent) but again it is what it is and their Dad is very involved so I do get some respite but he's not so great at the tough practical stuff.

Good to hear from others with ASC dd's though I must say smile.

To wooly, I went private route in the end. So hacked off with camhs in my area, you have to be at severe risk of self harm or suicide to get an appointment at the moment. No money at all.
Some areas are better than others though.

I moved her out of the shit previous school straight after the diagnosis.

I have a dd (10) with HFA too, her school also didn't pick up on it although she was terribly bullied. I found it a shock when she was diagnosed although deep down I knew that she was 'different' .
Are you going to tell her? My dd still doesn't know.

Getting the right secondary school is my next worry, have you got anywhere in mind for your dd?

lisad123 Wed 12-Dec-12 23:43:07

Welcome to the girl gang, there are afew here now.
I have two wonderful girls both with HFA.
If your in Herts can recommend a great social group grin

woolyandtig Wed 12-Dec-12 21:49:53

Can I ask how you managed this without schools support as I seem to be in this situation at the moment. Any advise would be greatfully recieved.

WeWilsonAMerryChristmas Wed 12-Dec-12 20:25:40

I also think you were right. You'll need that dx some time in the future, so well done. It's never easy ploughing your own furrow. ((hugs))

Handywoman Wed 12-Dec-12 17:10:46

aka I congratulate you, can't have been easy esp with no concerns raised by school (actually, out of interest, how did you manage it without school on the same page??). You obviously have sensible professionals who are willing to listen to the expert view of parents. Well done.

HW x

sickofsocalledexperts Wed 12-Dec-12 11:56:31

Of course you were right: I have a v hf DSD and it helps her to know she is autistic, even just to be able to compensate for it (eg by learning social 'rules' that don't come naturally to her). She is doing vv well.

Ineedpigsinblankets Wed 12-Dec-12 11:56:10

FWIW, aka I think you have done the right thing, I also have a Dd[10] with ASD she is high functioning.

She can cope in school so long as everything is settled and ok but if something upsets her she becomes very anxious but holds it in until she comes home.

Girls definitely present differently to boys and as they get older the social stuff becomes very complicated. Dd3 finds it very hard to keep up with the fast moving conversations and subtle social cues.

I have just posted a thread about whether my Dd needs a statement before she goes to secondary as I have no idea if she will cope with the changes.

There are many people in RL who think what they dont know wont hurt them, IMO this is not the case with undiagnosed ASD, I think it is pretty much guaranteed to cause problems later in life.

akaemmafrost Wed 12-Dec-12 11:44:43

I knew it was coming, ds has it also, still high functioning but less so than dd.

School never even noticed anything, she manages very well there though struggles socially but nothing massively obvious. All diagnostic process had been driven by me. I just didn't want her to struggle on getting older, I know with girls it becomes more apparent as they get older.

Nothing going to happen now really unless she starts to struggle at school but at least we know. She can be challenging at home but it's easily managed as I am already used to it with ds.

Just wanted to tell someone really. In RL there is the implication from people I have told of "why bother, if it's not affecting her?". I think it was right to pursue it though.

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