son been diagnosed with autistic spectrum disorder DLA

alcamist

my son is 7 and we have been told he has aspergus and dyspraxia.
i have found it extremely hard to believe this as a lot of his symptoms if you like seem very similar to myself as a child. of course i think of myself as being normal and for a while used to say to the missus "he's fine, i was like that when i was a kid". its very strange to sit there and hear somebody say "this and that falls within the autism spectrum", and think Bloody hell i do that. i also did not really appreciate what a vast spectrum it was and the degree's to which it show's if that makes sense.

for instance i can tell exactly when he needs the toilet from knowing the signs from when i was young, he will start to jig a little and leave it to the last possible second where he is dancing round the room practically and even then "r@&* do you need the toilet?" get's the answer "no i'm just thinking about ???" or no i'm just moving".

he will not go to the toilet number 2 on his own either as he cannot wipe himself. whilst on holiday last year i must admit that i had had enough of doing this job and said to him right you'll have to do it yourself as i'm not.

big mistake, one blocked toilet for me as he just kept wiping as he wasn't sure if he had got it all clean.

to be honest the school he goes to are bloody hopeless it has taken us 5 yrs before someone actually said yes we think there's something.

like someone else said earlier it can also be very frustrating because his sister 1 yr older is exceptionally bright for her age where as my son can just about write his name.


al

Sarahsaver

My DS's DLA renewal letter came today. I nearly cried but it is good news. His DLA has gone up to middle rate for care and lower for mobility (because he runs off and needs to be reminded of danger and so on an so on...)

Sarahsaver

Oh you HAVE to listen to Radio 4's 'Thought for the day' from today if you have not already heard it.
It does not seem to be up on their website yet, looks like it will be on there tomorrow as a listen again. It was about Autism/Aspergers.

Sarahsaver

Here it is, it is on the site now:
http://www.bbc.co.uk/religion/realmedia/thought/t20071122.ram
'Is difference necessarily disability? Should we change it if we could? Would that imply lack of respect or acceptance?'
Today's thought for the day is with reference to news yesterday that some parents of children with ASD are pushing for a 'cure'.

PasturesNew

Thanks Sarah

I know I would change it if I could. I've now realised:
- it's been the root cause of 99% of my life problems
- it's been the main reason I never progressed at work or anything
- it's been the main reason my relationships have failed (or, more, never started)

It's totally pants.

But at least now, late 40s, I know about it. If I'd been diagnosed as a child (problems were identified aged 8-12, but it wasn't known about back then) then my whole life would have been different.

As for a "cure" ... numpties.

The main problem I have with it is: I have Aspergers and am alone. Most people seem to be mums of kids with it fighting their corner, finding things out. I don't have that. Very isolating.


Adults with it are the "forgotten many", overlooked for years as its existence wasn't known about - and now it's "oh well, tough really, let's all rally round the kids".

PasturesNew

tarajayne wrote: »

I use a visual card with little girl I work with. She calls it her now and next card. I made it from pink cardboard and laminated it, then found some simple pictures on computer of playtime, storytime, numeracy, lunch etc, then cut then out and laminated those. We use blutack and change them every time the activity alters so that she always knows what's happening next, also what she is expected to do without me having to repeat it, once I've asked her once I just point at the board. It has cut out 90% of her tantrums.

She's not having tantrums. YOU'RE not letting her know what to do next!
Gets the brain in a spin. You get stuck, like a record stuck in a groove.
The "tantrums" are meltdowns. The information wasn't provided/available .... like a dalek it's the point where they get confused and spin/explode.
You HAVE to know what's next.
Non negotiable.


And, the next bit has to be known quite a long way in advance .... because there's all this other stuff to deal with that's going on, like the interruptions (sensory interruptions that throw your methodical thoughts out), sudden movements to track/be aware of and compute. And ... well, I could go on. 1000s of things are going on in my head when I am doing things! The inner dialogue that's telling you what you're doing, what to do next; tracking everybody/everything that's going on around you; planning ahead any changes you will have to make if you spot something going on. But it's too big and complex to explain here.... I could. But I am reining in my "one sided verbosity".... really, I could type a chapter on just 2 seconds of what's going on in my brain at any given point and why.

And on top of all that, as an adult, I am conscious of "appearing normal" so every movement is calculated. Everything I do is fake. If I walk in a room even the way I walk, hold my head, half-smile is false and calculated to "appear sufficiently normal that it doesn't attract attention".

I swear, it's like spending your life as an undercover alien agent whose secret mission cannot be discovered; yet you are in a room of hidden agents who are looking for the aliens.

mummytofour

Its horrid when your child get a DX and you start the research and find out you have the disorder too, easy to blame ones self for our kids problems.
At least our kids have us fighting for them and things have moved on from 20plus yrs ago when the kids were just classed as naughty.

Sarahsaver

I have had that said about DS 'he is just naughty' or 'all children have tantrums'

Pastures New what you said has really helped me, and I am sure helped others too, as to what is going on in our childrens' heads. My DS is like a spinning top sometimes that I know he would love to stop but he cannot decide at which point to stop.

Hopefully you can get some support here if you have no one 'fighting your corner' it is a real struggle.

My DS is quite popular partly because of his difference but I worry for the future when that may turn to bullying.

oldmotherreilly

How did all of you go about getting the diagnosis in the first place? I feel that my son has similar problems to those listed-last year his teacher said that when he moved into her class she nearly lost control because he kept interrupting and trying to clarify everything she asked him; he takes everything literally-I asked him to pop to my neighbour's to ask if she had any eggs-he came back and said that she had said yes thanks I have eggs and then left; he cannot sit still, even when playing computer games he jumps all over the place and pulls the system off all the time; he can't get to sleep at night and reads for hours and he doesn't get on with other kids. But when I say to teachers that I feel he is 'different' they say he can't be because he is so loveable and clever. But he sees the world differently to the other kids-he hates upsetting people and will do things like letting others win a race that he can win because they will get sad. He plays with kids in reception (he's in year 4) because he says they are not as 'nasty' as the children his age-if he plays with them he spends all play time in tears. The school have given him 'strategies' to deal with this but do not think there is an underlying problem-what do you think?
PS Sorry for the long post!

quietheart

Get your GP to refer you. we were referred to a community paediatrician first then an autism unit.
Best of luck.