I don't think I want DD to have a 'diagnosis'.

[AtYourCervix]

This is mostly why she has got to nearly 13 without one. I just keep expecting her to suddenly be 'normal' and happy.

I realistically and logically know this isn't going to happen.

So how do I get my head around it all?
And the big question. How do I make her happy?

But i I do nothing we'll carry on like this for ever. with her miserable and wishing her life away. and blowing up every couple of weeks. Leaving school as soon as she can having learnt nothing, with no future.

Well in theory all a dx does is signpost..and open a few doors.. But to be totally honest you tend to have to kick those doors down anyway. ( a dx just gives you a bigger boot).

Seeing as she is almost 13 .. What does she think about it all?

Have you had any external involvement at all yet?

My mum has a saying "what's more scary- facing this now, or the thought spending the rest of your life feeling this way?"

I'm not sure there is any guarantee that you would get your head around it all, but I have found it empowering to make the decision to seek out help for my child.

I htink I need therapy more than she does at the mo.

At 2.30 this morning (insomnia hit hard) I decided I would insist on SENCo involvement and demand and insist on an educatonal psychologist assessment.

I am knackered now and being tired and emotional and she's bounced out of school in a good mood and everything seems different. Until the next blow up when I will dispair again.
ARGH!

What dx are you trying not to get?

Can she cope and adapt without external help? Is she coping better with age or is it going down hill? For high functioning types the most helpful help comes from within, but the specialists can provide the right tools.

The dx provides closure and understanding. A sense of identity and confidence(believe it or not). This is who I am, this works for me, this does not. Here I need to watch out. This I need to improve. It also helps to focus on your strengths. It provides the key to what goes on and how to deal with it. This is more empowering than continuously feeling, or being told, that things are wrong with you, but not quite grasping what to do.

I think acceptance is half the struggle. Once you know what you are dealing with life becomes a heck of a lot easier. Of course, there is a period of mourning too. Your dd might be able to understand herself a little better and accept herself.

I just showed DD1 the thread title and first comment and asked her what she thought. She is 13 and was diagnosed with AS last summer.

She thinks you should ask your DD whether she wants a label which explains why she is different. In her words " having the diagnosis helps me to feel secure about why I am different and that I am not just weird".

She also said that being in an autism base with other pupils with AS/ASD has allowed her to form proper deep friendships for the first time in her life. That has been a big confidence booster for her.

She also wants to go to school every morning which is a day I never thought I would see.

thanks. that helps. i need to pick my moment and see if she will talk about it. she hasn't up to now. flatly refuses to.

She sounds just like DD1 was last year. I realised I had to wait until she raised a problem and then try to guide the conversation round to what I felt we needed to talk about. It meant some long waits.

Good luck with this. When they are this age you have to do things at their pace and it's so frustrating!

If you think it's AS you might try giving her books or links to websites then she can look at them on her own. I'll try to find some suggestions for you later.

Thank God I have seen this post my ds is 6yrs and not had diagnosis he has had referral but waiting list is so long still waiting for appointment. My issue is that they don't seem to get much help medically and last year after much shouting and stomping I got him an ENT(ear nose throat) appointment and found out that he couldn't breathe or hear properly and it had porbably been there ds' live! Now I have lost all faith because I said I thought this was a problem when he was 18mths in addition to speech and no one listened. Cognitively ds is near top of the class since ENT he is now socialising and speech improving. School have provided 121 support again after I read the riot act when they let sit on a computer all day. His 121 TA who has worked with other ASD children feels his development after op has been so quick that she feels his issues where related to ENT. The school SENCO admits that she has made his issues worse to get funding for which he has been refused twice and is always negative because her concern is the budget (despite the 121 TA being employed at the school for 5yrs) - she even admits that he won't need help forever and even with a diagnosis he won't get any funding because his needs are not severe enough - now I'm not sure what to do??

What I really want to know is, is my ds going to be able cope when he is an adult? Will he meet someone special or even lots of sspecial people and have a life - so I can moan he doesn't phone home enough! Or is my ds destined to walk the streets talking to himself while people laugh and point ....... :(

Having spent most of my childhood - well all teens wanting to kill myself, dreading/fearing school, keeping v. quiet and exploding at home. I wish I knew what i know now, ds has a dx of HFAm as i should have as well. I don't know if i would have listened at teen point, but if started as ds has now (his 5) I'm sure/hope it will help. Also to explain it's not just cos i'm a horrible undeserving, sad, stupid etc person, but I need to work things out and certain things will be different and I'm not alone in this. Luckily had a dog which help me alot. Ulimately I like helping people, just don't know how to.

Having said that got to adulthood just and having two amazing kids, a job, hubby, travelled etc you do cope.