Hi, Ive just joined this forum, have been loking into ASD since I spoke to my GP about my 8 year old son a few months back.
I am looking for some reassurance really that this is the right thing to do, and views, opinions, on how a diagnosis is perceived in the UK, and whether it will help/hinder my child.

For some background info, I have been struggling with my son for the past 6 years,its got to the point of feeling like groundhog day, the same day played over and over and nothing I do makes any difference, his anxiety is getting worse, he is developing more and more stims -noises mostly, making a circle over his eye when recounting or explaining something. He doesnt seem to 'get' cause and effect, takes everything really personal, has to have everything explained in detail, and is change resistant - even when we take an alternative route to the supermarket he is visably ditressed.
One day he flew into a rage after school over something trivial someone said something was yellow when it was blue, he lost it completely. He hurt his smaller brother quite badly, spat in my face, shouted the most awful things. I just felt I cant cope and everything is out of control.  
The thing is I could see myself in him, so I went to the GP to voice once again, as I have done on several occasions, concerns about his anxiety and behaviour. I have been plagued by anxiety, social disconnection, emotional confusion, to some degree all my life and I didnt want him to become 'me'.  I never thought of ASD as a possibility until the Gp asked questions about aspergers.

The GP has now reffered him to CAMHS for assesment.
My nephew has been diagnosed aspergers and I took the online 'test' and had the result that it was very likely that I am a aspie.
My concern though is that should, as i suspect, my son be 'labelled' he will treated differently, at school and eventually in the workplace.
theres no doubt we need help, I cant begin to think of another day like this let alone the rest of his life, but will we get help, can I get it without official diagnosis? Ive been told there is a long waiting list in my area, over 6 months, I have 4 children and reading up on ASD I suspect that one of my younger boys may also be on the spectrum and Im finding this all really overwhelming.

Hi there, and welcome.

I'm in Glasgow and my 8 year old son was diagnosed with Asperger's a year ago, after a 14 month wait.  I would say, yes, it is worth getting the diagnosis.  It ensures that the school and other professionals involved with your son have to comply with whatever statutary obligations are placed on them.  These will differ between England and Scotland.

We have been very lucky with my son's school in that they were working with us even before the diagnosis, but having the diagnosis means that what they are doing is put in writing and should he change school in the future there will be continuity.  Speech and language therapists go into the school and work with my son and his class teacher to deal with any difficulties he has.  All of this forms part of his Additional Support Plan, which is regularly reviewed.  The teaching staff know of his diagnosis, and that informs how they react to his behaviours.

Sorry, I have to take the dog out now - I'll post this and come back.

hello pigeon

what the diagnoses of our five year old son has actually achieved

he has his one to one support at school when they cant cope they ask us to collect him

we go to lots of meetings

we are given names and phone numbers of people who may help and if we phone any of these numbers we are given names and phone numbers of people who may help so we have a big list of phone numbers of people who may help

the main positive is we get about thirty pound a week

How come you get about £30 a week?

care allowance i just guessing the amount as my wife deals with money

Oh, I should check that out.  I think I did get a form when he got his diagnosis.  It'll still be somewhere in the ever-growing pile of paperwork I'm gathering. I should look for it, and make an application.  Thanks.

Oh, I should check that out.  I think I did get a form when he got his diagnosis.  It'll still be somewhere in the ever-growing pile of paperwork I'm gathering. I should look for it, and make an application.  Thanks.

i will ask my wife the de tales and post them tomorrow you should be entitled

I would like to post a whole lot - as a reply - but (I have found- just my observation) that new people that sign up (parents with new diagnosis) tend to ask a question and then get busy... I hope that you'll stay around.

I  want to say one thing for now...

You sounded like my husband there mentioning a "trivial thing"... he finally gets it though... what we might want to call trivial is really the proverbial "straw that broke the camels back" in many cases... it takes herculean strength sometimes to make it through sensory and other stressors of having an atypical way of processing input/information....

to this point..as others mentioned.. once a dx is made, perhaps a couple small modifications like less homework or more down time at school , perhaps an aide to help with all the transitions that occur for 8 year olds.... there is so much to process....

anyway- I could and would go on and on...

(I did not go and get the official diagnosis for my son until he was about 11-- I avoided telling anyone at his school - I also to this day - do not care for labels.... We had to get the dx to take the pressure off of him that teaChers and administration will put on when they try to make your child act just like the other 99%.  Very stressful on the kid and yes us parents too-)

This post was last modified: 04-08-2010 03:44 AM by windy.

Sorry for the digression there.  

Back to the OP.  It will vary from area to area, but I do think it is easier to access services and support with an diagnosis.  It may be that you could access some services without a diagnosis, but with budget cuts and other pressures, priority will be given to those who do have a diagnosis.

My son had a Speech and Language Therapist (SLT) before his diagnosis, but the diagnosis has meant that the SLT is working in a more focussed way and she can refer to Asperger's when liaising with the school etc.  My son does have problems with anger, and relating to others, so his SLT is going to be spending the next few weeks focussing on emotions with him.  She uses social stories, cartoons, and will sometimes work with him and another child together.

My son knows about his diagnosis, and talks freely about it.  He says it helps him to know that there are other people like him as he has known for some time that he is different - he says he is "weird".   I got him some age appropriate books about Asperger's, which he read with great interest, and he regularly asks questions about the various aspects of Asperger's.  That wouldn't be possible without a diagnosis.

I'll post more as I think about it.  Hope this helps and being here and sharing things will make you feel less overwhelmed.

Pigeon - his life will be difficult with or without the diagnosis.  With a diagnosis he will hopefully have access to services and treatments (I know bad word here).  DD is 20 (21 in July) and received some services, but not enough because in the early 1990's my husband and I didn't have access to the resources to know what she had or really needed.  Also she has other developmental and physical conditions that complicate the most effectice approach to helping her.

Anyway my 2 cents is to go for it.  
    

thanks for the feedback.
My son (A) is on school action for transition and social skills at his school and attends weekly group sessions taken by a teaching assistant. He had some social skill issues in infant school and has always had anxiety but everything has intensified since moving to junior school, understandably. I dont find the school very supportive, the last parent teacher consultation about  A's behaviour was like facing a two teacher firing squad.
I understand the 'camel and straw' and not being able to predict or even control this adds to the stress, not only for him but the whole family. Not being able to be alone doesnt help, when I feel A needs time out I have to sit him on the stairs, but he has to be able to see other people or he goes into panic, which kind of defeats the whole, time out to calm down.
One thing I read, but I wonder about the truth in it was about the facial characteristics of people on the AS , my son has the most amazing long eyelashes, everyone comments on them and a very pretty face, but he always looks sad, he got upset one day becasue his teacher told him he never smiled and took it as a personal insult that he was a grumpy person, which he certainly isnt.

well, thank you for the welcome, I will certainly keep coming back to this site.

That teacher saying to your son that  he never smiles makes me sigh a very deep sigh. My son doesn't smile either, he either looks serious or he laughs out loud. But I can read him easily, it's just different. And to drum that into the skulls of teachers...isn't easy.

But having a diagnosis helps. When he has a diagnosis they can't get away with such things so easily anymore. However, even with a diagnosis you still have to keep pointing things out, like: being angry with him just scares him; don't expect him to conform, it is enough if he behaves acceptably; don't just focus on the behaviour, get at the cause for the behaviour...etc.

When I was in school teachers were always telling me, "it's okay to smile, you know."  I was always very confused because they acted like they were trying to console me and I was hardly ever an unhappy person.  Ever.  I have had clinical depression most of my life and as a child I was still generally in very good spirits most of the time.  It's funny the things I look back and notice now that I know I have autism (10 years later).  It's been very comforting for me to have the diagnosis.  It's hard to feel like nobody in the world understands you, but it's a lot harder to feel like you don't understand yourself.

Ruby, that must be so true! That is another very good reason for the OP to go for a diagnosis, apart from any support she can obtain by it.

I resisted a diagnosis for a long time because I didn't want my son to have a label. But he will be judged anyway, unfortunately, and then it is better to have a label than for him to be thought of as stupid or weird.

I can testify that it is true.