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Dd has finally been diagnosed!!! :-)

(35 Posts)
frazzledbutcalm Fri 30-Jan-15 22:16:02

That's it really .... ASD. It's taken lots of years but we got there eventually. I want to shout it from the rooftops! I only hope now she'll get everything she needs/deserves at school.

Ineedmorepatience Fri 30-Jan-15 22:20:09

smile and sad frazzled, its not what anyone wants but if you know it is needed and will hopefully open doors to support it is a great feeling to have got there!!

It took 3.5 yrs for Dd3 to be diagnosed and she was 9.

Be kind to yourself and take some time to get your head round it cake flowers

frazzledbutcalm Fri 30-Jan-15 22:26:15

Thanks Ineed ... Dd is 11. I've suspected from age 3 but no-one would listen or help. I eventually did a self referral when she was 9. It's taken from then til now to get dx. At the moment I just feel happy that's she's been recognised. Happy at the thought of the better understanding she'll get from school, or so I hope! I'm trying not to feel sad at what's to come for her future. One day at a time. Thanks for the cake and flowers

Ineedmorepatience Fri 30-Jan-15 22:29:43

You are very welcome smile Have a look at "The girl with the curly hair" She writes books and has a webpage and FB page. I bought Dd3 the Aspergers and Anxiety one the other day.

Inside the book she uses the term ASD not Aspergers which is helpful for our girls!

It is a good book for anyone with ASD related anxiety!

senvet Fri 30-Jan-15 22:33:01

I am still so frustrated for you all that it is taking so long. I get it that rushing to a diagnosis is a bad idea, but it is the waiting for months and months for appointments, and then getting passed from pillar to post.

But glad you have made it through the maze, over the hurdles, under the cargo net past the punch wall, and over the big red bouncy balls.

frazzledbutcalm Fri 30-Jan-15 22:34:29

I'll take a look, thanks. I thought Dd would be dx aspergers but psychiatrist said they no longer use 'aspergers', everything is ASD as there's so many different traits it's all just under one roof. I imagine other areas probably still use aspergers though. Dd has MASSIVE anxiety so any help is gratefully received.

Ineedmorepatience Fri 30-Jan-15 22:39:37

The psychiatrist who dx'ed Dd3 said something similar but then recently the Paediatrician asked Dd3 if she wanted her Dx changed to Aspergers!! confused

She said no though because she identifies with Asd now and actually often uses the term autism too.

The Paed was fine about it but just said she is typical Aspie and could change her mind later if she wanted to!

Actually in the UK the rules about Aspergers hasnt actually started yet I dont think, I am happy to be corrected though!

Also at the end of the day, your Dd will identify with whatever she wants to identify with and if Aspergers fits her better then I would use it! There is no law which says you cant!!

frazzledbutcalm Fri 30-Jan-15 22:45:02

Tbh I'm not even sure of the difference between ASD and aspergers! I just thought because she's VERY intelligent she must be aspergers. blush
The extensive questionnaire has made me realise that dd1 and ds2 may also be on the spectrum .. but they don't have the severe social communication difficulties that dd2 has. I've explained to dd what autism is (as best I can!) and she seems quite happy. She's been happier today than she has been for a long time. I don't know if that's because she has answers or because she's had the day off school so it's been much reduced stress!

frazzledbutcalm Fri 30-Jan-15 22:48:03

senvet ... that's exactly what it was .. and more! Well said!

Ineedmorepatience Fri 30-Jan-15 22:50:55

There is no difference! Its just a name for a set of symptoms, gifts, issues, talents, personality traits difficulties etc!

The name just points people in the right direction for deciding what is the best support that is all! And to help the person have a better understanding of themselves.

That is my opinion anyway! wink

I am probably on the spectrum somewhere, an undiagnosed aspie maybe and I do think differently to other people so dont quote me!! grin

frazzledbutcalm Fri 30-Jan-15 22:52:32

I won't take you for your word wink .... but I will take your words of wisdom and use them wisely wink

Ineedmorepatience Fri 30-Jan-15 22:55:12

Aaahh thanks you made me blush now grin

Am off to bed, hope you and your Dd sleep well and have a look at the girl with the curly hair, she has lots of interesting stuff to say and some interesting friends too smile

frazzledbutcalm Fri 30-Jan-15 22:56:58

Thanks ineed. I'm off to bed too. Mn is great for help, advice and support. I'll definitely look at the curly haired girl.

PolterGoose Sat 31-Jan-15 08:54:27

Message withdrawn at poster's request.

Ineedmorepatience Sat 31-Jan-15 09:57:59

Yes that polter , your last sentence is what I was trying to say in a tired and its been a long week kind of way smile

Ineedmorepatience Sat 31-Jan-15 10:00:20

How are you feeling this morning frazzled?

I forgot to ask last night was your Dd with you when the diagnosis was made? Or have they left it to you to explain it to her?

If she was there, is she ok and how did she cope?

Teawaster Sat 31-Jan-15 10:12:31

My DS was diagnosed with ASD a couple of years ago aged 11 also .
Aspergers was no longer a diagnosis by then but the paed said she liked Aspergers as it fitted people like DS perfectly. We always use aspergers although it's not written down anywhere. I don't think at 11 it makes much difference whether it's HFA or AS as the only main difference I think is that there was no language delay in the early years with AS , so often children like your DD get diagnosed later.

When he was younger DS had few anxiety issues but in the last couple of years it's much more frequent. I'm still looking for solutions though

Hope you're feeling ok today. I remember sort of feeling on a high the day of diagnosis, seems strange but it was such a relief to have things fall into place. However the next day was a sort of anti climax with worrying and going over things that were said at the assessment, however that passed too and 2 years later things are mostly fine

frazzledbutcalm Sat 31-Jan-15 21:39:07

Thanks polter .. Dd speech is fine (talking to familiar people), although she struggles to describe/get words/thoughts out. Her academic capability is phenomenal. That's why I assumed she was aspergers. I'm still not sure I fully understand the difference tbh blush
Ineed .. thanks for asking about us this morning. We're all doing fine. Dd seems the happiest she's been in a long time! Dd was there when they told us the dx .. She was her usual quiet, self conscious self when psychiatrist was explaining things. We came home, made cuppa for us and hot choc for dd then sat down and explained what it meant. Dd didn't ask any questions but was quite happy. I think because a name and a reason has been given for her struggles, it has just lifted a huge weight off her shoulders!

The psychiatrist was lovely. He's writing to GP and school. He said he's recommend dd be seen by SALT to help with cognitive/receptive speech (I think!) and OT. I'm just astounded that he's already referring to these services without me having to ask!

Tea .. Thanks for your post. Dd has massive anxiety issues. You're right about feelings though! I was on a high yesterday, hardly slept last night, but kind of still feel full of adrenaline today! But feelings keep creeping in of the enormity of it all! I don't know if this is a 'normal' feeling but I want to go to dd previous school (which ds still attends) and see every single teacher who dismissed us and who gave negative derogatory comments to dd and I. I feel anger there towards them blush

Thank you for all your support and kind words and thoughts. It's good to hear everyone's dc are doing well.

senvet Sat 31-Jan-15 22:33:17

frazzled You are having a normal reaction to having a weight (and wait) off your mind. DD also is doing something lots of kids and older folk do - having a sense of relief that 'what separates me from my fellow humans is not, after all these years, my fault' as a dear relative said when diagnosed in her forties.

She did a sky dive for her 50th birthday....

Ineedmorepatience Sat 31-Jan-15 22:48:37

The feelings about the school are perfectly natural frazzled no child should be failed by the system and no teacher should ignore the concerns of a parent!

But sadly they are and sadly they do sad

Someone said to me when Dd3 was Dx'ed and I wanted to rant at her previous school where she had been failed, "You can either use lots of energy looking backwards and fighting people who you cannot influence, or you can use your energy for the future and for getting what your Dd needs next to make her life better!"

I am really glad that your Dd feels ok about her Dx my Dd3 certainly does, they know they are different but until they can understand why, it is really tough for them! Once Dd3 knew she had Asd she was much better at relaxing and being herself when we are at home or out and about with family and friends although she still masks terribly at school! Which is hard because it means that the teachers still dont really get it!

Enjoy the rest of your weekend smile

MrsBrollyhook Sat 31-Jan-15 23:58:47

Hope that the diagnosis is a positive thing for your DD Frazzled. Considering whether to seek a diagnosis for my 9 year old DD at the moment, so good to hear your experience.

frazzledbutcalm Sun 01-Feb-15 09:34:14

Mrs ... I don't have much experience of the system ... but the struggles we've had for 11 years with dd is horrendous, especially where school is concerned. I'd definitely advise getting a diagnosis/assessment.

Thanks Ineed and Sen It's great getting advice and support on here. smile

bbkl Sun 01-Feb-15 16:47:24

Message withdrawn at poster's request.

bbkl Sun 01-Feb-15 16:52:38

Message withdrawn at poster's request.

frazzledbutcalm Sun 01-Feb-15 18:35:15

bb I'd decided this morning to see the senco at dd old school (I currently see her anyway for ds), and let her know dd now has a dx and to ask if she could speak to the teachers to let them know as it could benefit other children in the future. Our main issue was teachers always said "oh she's crying just because her mum's here" and "well she's fine in school, she only seems to have a problem at home, maybe school's not actually the problem" - so I thought I'd kindly mention this to the school so that others won't be dismissed so easily.
We're not near the area you mention, but I'm not sure dd would like or participate in anything! She doesn't speak to anyone. I'll look for something local though as I'd at least like to give it a go ... she may surprise me. wink
I'm also intrigued now as to what will be in the written report .. I hope it doesn't take too long to come through.
Good luck to you and your dd also. smile

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