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we have our asd diagnosis

(29 Posts)
used2bthin Mon 21-Jan-13 19:23:43

today. after five years of worry over dd s severe language disorder. which obviously is still there but this makes sense of it all and the obsessions and behaviour.

waiting for report still but felt like telling someone as I.'ve had so much help here.

used2bthin Tue 22-Jan-13 19:52:59

Yes that sums it up well and is what I was hoping to be the case I think. There is comfort in knowing I am not alone with it neither is dd if that makes sense.

ASD is a good dx to have. To some extent it can mean whatever you need it to mean to explain behaviour and access services. No two children with ASD are the same. Sadly provision is generic, but I think whatever dx you get the provision is pretty much the same tbh. Some of it makes a difference, a lot of it doesn't, but having the dx gives you leverage and protection.

used2bthin Tue 22-Jan-13 19:32:29

Meant know what you mean, it's strange all that is over.

used2bthin Tue 22-Jan-13 19:31:52

Thanks yes I think it will get to me, I am definitely more sensitive today as dds teacher was saying about the social worker ringing and asking did she think dd has autism and she'd said sometimes. I am guessing this was before I said she has a diagnosis now but it's still wound me up a bit, just the idea of people speculating but i know that's not what they were doing and I gave permission for her to call and discuss dd!

Yes I know what you mean, I have thought so much about what it would be like to have a cause for dd's difficulties and I know I don't have a cause for the autism but this is so much further ahead than ever before, I have sat up going over condition after condition trying to work it out!

auntevil Tue 22-Jan-13 17:24:50

Congratulations and sad does sum it up.
Last week when the family got a genetic dx, I could feel myself grinning.
As you say, it's a feeling of relief that you are not deluded, all the appointment organising, form filling and research was for a perfectly legitimate reason.
Shame it takes so bleeding long and knocks stuffing out of you on the way.
Put some stuffing back by reminding yourself what a good job you're doing as a parent - getting a dx, working to get suitable support and a bit of wine

Ineedmorepatience Tue 22-Jan-13 16:02:40

Hi used I am glad you got there but obviously be kind to yourself because it could hit you in a day or so.

It took 3.5 years to get a dx for Dd3 and I nearly jumped for joy when the psychiatrist said that she does have ASD.

I did feel a bit wierd after a day or so though, I hadnt realised how much time I was spending thinking about assessments and appointments.

Good lucksmile

used2bthin Tue 22-Jan-13 15:09:52

Exhausting isn't it. My friend had a baby just before me and hers sleeps 7 to 7! Dd1 slept quite well too although had to be woken for medicines so I didn't appreciate it.

And thank you yes it's so much better than wait and see which was doing none of us any good. I can tell people she has asd which helps a lot too as people have generally heard of it.

Cake, wine and choc it is!

chocjunkie Tue 22-Jan-13 13:49:45

oh, usedto - just spotted this.

well done; you must be incredibly relieved.

will probably take some time to sink in so be kind to your self (wine and chocolate?)

silverfrog Tue 22-Jan-13 13:20:29

well done, used2b

what a journey, but glad it came right (that sounds so wrong!) in the end, especially as you were worried you were going to be fobbed off.

I remember the huge surge of relief as I was finally told 'meets the criteria for ASD dx' - at last! someone who wasn't going to say 'wait and see - come back in 6 months...'. I walked out of the hospital, and cried with sheer relief that we finally had an answer, and a bit of paper, and all that went with it.

hope your dd2 gives you a bit of a break today - my 6 month old still only goes for 2 or 3 hours before needing another feed, and last night let me have all of 3.5 hours sleep <needs matchsticks>

used2bthin Tue 22-Jan-13 12:59:57

Thanks Ellen and sweettea . I know,pointless speculating and at least now I can focus on getting things right now. Haven't yet told many people but those I have have said they are happy and sad for me which sums it up.

sweetteamum Tue 22-Jan-13 10:08:42

Well Done usedtobethin you can now carry on with the next chapter with more of an idea what the future holds

EllenJaneisstillnotmyname Tue 22-Jan-13 08:31:13

Well done, used2b. brew and cake needed this morning. I wouldn't start worrying about what might have been if she'd been DXed earlier. If the profs didn't realise it, and wouldn't have DXed her without your pushing, what more could you have done? We all have regrets. I'm sure any work done with your DD up until now will have benefitted her, whatever her underlying DX s. ((((hugs))))

Oh my naughty 7 month old does the same!!!!!!

used2bthin Tue 22-Jan-13 07:28:06

posted before . it timed out. star thanks yes it's been a stressful wait so glad it's over and a short . break is a good plan. I say short because dd has been refused funding for treatment of a medical issue which is a result of her genetic condition. the pct say if I want to appeal I need to . provide more evidence . of why she should . have . it. Never ends. But this diagnosis bit is done which is a huge relief and we are also having behavioural support from the psychologist which helps a lot.

Today is definitely a rest day. (especially as naughty seven month . old still sleeps no better than when . she was born!)

used2bthin Tue 22-Jan-13 07:21:37

thanks all I am always happier in the morning. it is upsetting but it's the start of moving on I think. Zum we have had a statement since she started reception. her speech and Lang disorder and medical needs are quite severe so that may be why but it seems to differ so much are to area, it is unfair. also my dd recently has been hurting the other children which has meant she got more support as it became so awful, she is moving to special school in Sept. good luck, I was getting so worried about more waiting it's like being stuck.

wading yes it is tough either way. I had been reading on it and just knew it was the case so knew any more delay would be no use as we would end up with the diagnosis in the end . she is six and a half.

blackeyed Susan we have OT already but I think we now get similar with the other stuff but I think for other family members it will help them understand and . it's an . explanation.

WadingThroughTreacle Tue 22-Jan-13 00:03:41

Hi zunbaleena. I was told statement is based on need, not diagnosis. Which begs the question, why did no one tell me to go for one earlier. I was a bit in denial and didn't push early for diagnosis, but once I did school said oh need is more important. To be fair,school did suggest SA and they have done the application so i am prob lucky but I think maybe as far back as nursery they could have been nudging me.

zumbaleena Mon 21-Jan-13 23:37:13

I dunno how to respond. Here I am, trying to get an asd diagnosis both from NHs and a private doc and am not getting it as dd keeps clearing the test. She still has huge challenges but she won.t get the support until she has a diagnosis and my statementing is already under way. I feel like such a fool.

Oh Thank God!

I know it isn't the best thing but it definately is the better thing, given the options.

Still feels like a slap in the face though. Be kind to yourself and give yourself some time off. It's important to get on with the next steps but you also need to give yourself a little holiday at important milestones in order to regroup. Have some breathing space.

WadingThroughTreacle Mon 21-Jan-13 22:28:53

Hi how old is your daughter? My son is five and we are getting outcomes from multi disciplinary in a few weeks. I feel like I am going mad waiting. My son is being assessed for statutory assessment too. Gad you got the outcome you wanted. I am not exactly looking forward to getting a diagnosis but the thought of not getting one is driving me equally crazy!

blackeyedsusan Mon 21-Jan-13 22:28:13

we get an appointment with a nursery nurse who may goive us al the information we need fo the next 14 years or so.. hmm

a referal to the support services, whose support has been cut so don't hold out much hope.

and ot referal as he does not write.

used2bthin Mon 21-Jan-13 21:28:56

thanks yes it's a strange thing. almost exactly five years since I took her to the doctor having lost words. and actually what did it was asking the question does she have autism. it still feels like she didn't used to because I was so sure she didn't ,it's got so much more obvious recently. wish I had known as there are things I would do so differently.

mariammama Mon 21-Jan-13 21:02:29

but I remember the relief well

mariammama Mon 21-Jan-13 21:02:07

Congratulations thanks and sad and have a brew. Might hit you tomorrow.

used2bthin Mon 21-Jan-13 20:58:35

thanks blackeyed and lougle. still lots of questions like where does the chromosome deletion fit with this and have to wait for the results of the cognitive tests but I think things are finally becoming clearer.

I didn't know that about the report. she said next week but could be delayed if the snow continues. I was impressed tbh as have months for paed reports.

black eyed what happens next for you with support? I think we are not looking at much difference initially as dd already is moving to special school but it is definitely good to have . it there.

lougle Mon 21-Jan-13 20:41:50

Well done, Used2bthin - you were right all along x

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