Where's the line?

[anxiousmom]

As I'm waiting to my son to soon be assessed I'm flipping between worrying he does have AS and then that he doesn't.

 

The worries of him being diagnosed with AS are pretty obvious? But at least there'll be an explanation for why he is like he is. I'll have some sort of freedom to allow him to be who he is.

 

But what if he hasn't got it? Then will he 'punished' for being who he is? Will I have to stop his excentric ways? Will he be given less freedom to express himself and less 'indulgence' of his quirks?

 

When I first read about AS I almost had a sense of relief - stopped blaming myself for him, thought there's a light at the end of the tunnel to guide me in the right direction to help him. But now I'm wondering if he has got it.... worrying he might not have. When I reach that light and it's not for him.... he'll have to walk in the dark with his 'weirdness' and somehow be more responsible for it?

 

Am I making any sense? Maybe I'm expecting too much from 'the light' anway. But at what point can someone use a diagnosis to explain a child's charactor... whilst someone so similar just has the charactor?

[oracle]

A dx can be a relief it was for my eldest son. But sadly it's not a magic key which opens all doors of understanding and awareness. Infact sometimes I think that giving a dx of AS can be a disability in itself I have often wondered if my two would be better off being known for just 'being themselves' even if that means that they are odd and do not fit it. Sometimes the light that comes with a dx actually blinds the people who we expect to be able to see it clearly.

 

I do not think that there is an easy answer to this one. I do however undersand where you are coming from. It's easy for me to say but try and keep calm and see what colour the light does turn out to be.

 

Carole

[Tylers-mum]

I can't offer any advise sorry but just wanted you to know, you are not alone! I am in the very same situation as you and have the same worries as you. Next Thursday, my son is being observed in school and that's basically make or break! He has ASD or he doesn't! Where do we go from there?? I have his teacher and the SENCO saying he has traits of ASD but doesn't have ASD ('many NT kids have ASD traits but don't have ASD' is what I was told yesterday at Parents evening by both these ladies whom also freely admittedto knowing not a lot about ASD!) But on the other hand, his LSA who has worked closely with Tyler these past 3yrs and has some knowledge and experience of ASD says that my son appears to be on the spectrum from her ppoint of view!

It's a waiting game and a nasty one at that!!

 

<'> <'> <'> to you. You are not alone!!

Edited October 11, 2005 by Tylers-mum

[jools]

i understand where you are coming from.

the closer we get to his appt with psychiatrist (3 weeks) the more worried i get.

will he be dx with asd? will he dx with add? will he be dx with damp? or will he get no dx at all.

some days i think he shows signs from everything, but when others query it i begin to doubt myself!

i am scared.......on one hand i don't want a dx but on the other i know that if we come away with nothing he will get no help in school and then i don't know where we will be

 

i can't offer any advice but i find it invaluable to come here and realise i'm not alone and i hope you find some comfort in that too

[madme]

I hope it goes well with the assessment.What Carole has said im sure we all have gone through. In a way I sometimes wonder if I did the right thing. However without the dx we wouldnt have got him the support. Its not easy. Take time to "grieve" as although it can be a relief it hits hard I found a few days later. Try to see the positive. My daughter is also on the waiting list for assessment - a two year wait. As shes only 4 there is no rush. She is also v different ( sons dx is adhd aspergers dyspraxia). Im not sure if she is or isnt. Some days i see things and think lets get it over and go get her assessed privately others I think she may cope without a dx as shes pretty able. We have to make decisions and try not to dwell on them afterwards. No decision is wrong surely if it was taken with the childs interests at heart. Take care of yourself.

[anxiousmom]

I see him at school - freindless and awkward.

 

If he has AS then there's the reason... but I don't supose it'll help him get freinds.. "you must play with him... I know he's pedantic and awkward but he has issues".... don't suppose that works much on 6 year olds.

 

Then even worse. Do you ever get "ooo stay away from him... he's weird. Go play with some 'nice' children sweetie pie lummy kin".

 

I think I'm thinking too much today

[mum22boys]

We all have days we think too much.

I watch the other kids come out of school and pair off to go to each others houses. Mine never gets an invite. It hurts to see it but I know it's better he doesn't go because I would have to explain to other mums that he can't play properly etc. Anyway on the odd occassion a child has asked him if he wants to come and play he puts his head down and shouts no. It is too much for him.

You are just a concerned mum who is woorying like the rest of us.

[Strange girl]

Do you ever get "ooo stay away from him... he's weird.  Go play with some 'nice' children sweetie pie lummy kin".

 

:

Do you mean when the active hussling and bussling playground goes quiet as your child enters and everyone scarpers.. and a lone tumble weed rolls by? No, never get that. But you do get the odd ignorant parents who would rather not know and not find out. When my son had his 5th birthday he invited a girl who he really liked for his party and the next day when he asked her if she would be coming she told him her mum had ripped up the invitation! Broke his wee lil heart.. he wanted to cancel the party.. But there are a few good parents out there who see beyond the veneer.. thank God for these few, who can make such a difference. A friend of mine had a party for her 10 yr old AS daughter and invited the whole class. Noone turned up..

 

As for the dx, whatever way it goes the child doesn't change. Before our assessment I made notes of all the behaviours that led me to believe my son was autistic (I couldn't trust the school to give a fair or acurate portrayal at the time) but I had the exact same worries. Would the dx help or hinder? It has helped with getting a statement and in a way to explain to others that he is not a naughty child. (well no more than anyone else's ) He has been given ASD-NOS, adhd, and mild dyspraxia dx- but with or without a dx, he is the same loving little boy that challenges me in every way.

 

I wish you luck and hope everything goes as smoothly as possible for you both.

[BusyLizzie100]

I know exactly how you feel, anxiousmom. My son is undergoing assessment at the moment. He has already been seen and we have been quizzed about his history, now they want to do more tests, including an ADOS (Autism Diagnostic Observation Schedule???!!!) and visit him to observe him in school and at playtime.

 

On the one hand I'm thrilled that they're being so thorough, but equally I'm scared stiff that they'll say he's not AS... what will we do then? Also, he hides it so well. Are they clever enough to look beyond his facade? Am I willing him to have something wrong? And what will I do?????

 

I'll keep you posted as to how we get on...

 

Lizzie

[witsend]

Yes - I know how you feel too anxiousmum - I went through all those feelings prior to diagnosis and I think it is the worst time of all (so far), on the one hand you want and need the dx to proove your not imagining it all and to get the right help in place and on the other your worried your landing them with a label for life that might turn out to be wrong .

All I can say is that since my son was dx just over 3 months ago the main feeling which has continued is one of relief. Now even on the 'good days' I am sure his dx is the right one and several things have happened recently which have just confirmed it more so. The dx is not a magic key but it does help with getting more help definately.

Busylizzie I know what you mean about willing him to have something wrong and yet dreading the 'verdict' my son does manage to hide his AS very well at school and I think that's partly why it took so long to get dx but if you do your research and have the courage of your convictions then I do think you can help a lot with the process of dx.

Good Luck - hang in there - luv Witsend.

[Kathryn]

I can only say how it was for me. A dx confirmed what, after 15 years we more or less knew, but most importantly it gave me permeission to stop blaming myself for my daughter's behaviour. I had gone through all that time thinking that other parents must be doing a brilliant job as their children were far more sociable... coordinated... even tempered... confident... etc etc..and I therefore just wasn't trying hard enough. Once I knew none of it was my fault it enabled me to stop beating myself up, stop comparing, and start accepting and appreciating my daughter for herself. I only wish she had had the dx years earlier.