DS has dx of Aspergers... feel a bit all over the place

[potoroo]

DS(5) has just got a diagnosis of Aspergers (last week). School have been fantastically supportive and are kicking off the statementing process - he already gets 10-15 hours 1-1 and they've put other support measures in place, so that part at least is covered.

But I'm feeling all over the place. Even though I knew it was coming, to actually say "DS has Aspergers"... I just can't get my head around it, because that makes it sound like something is wrong with him. Can someone come and tell me everything is going to be OK?

You are where I was s few weeks ago. When the psychologist told me I felt like I'd been hit by a bus even though I knew it was coming.

I went to Tesco on the way home and couldn't help looking at all the other families and wondering why mine?

It's hard to use the words and to think thoughts for a while but it does get easier. You just have to get your head round the fact that it doesn't change your child.

Thanks. I think the other thing is that I don't want to have to explain it to people.
I'm happy for other people to know, but I don't want to talk about it... except with someone who can really understand...

Potoroo, Ds has autism and i like to think, there is nothing wrong with him, he just views the world differently. Ds will still be ds with or without a label.

Everything will be ok

Im sure your ds has many strengths as well as weaknesses.

i never explain to anyone, unless it would involve them having to take responsibility for ds.

I do get a few looks when ds behaves in a 'strange' way and i have been asked 'why is he doing that', because he wants to is my reply!

I dont see the point of trying to explain to anyone unless you have 3 hours to spare!

Thanks for your responses - just knowing we are not alone is helpful

I think that's what I mean claw - there is nothing wrong with him at all

I'm not explaining it to everyone, but even telling my family felt a bit draining. (They are on the other side of the world).

I'm also trying to figure out the difference between things that DS can't do (or struggles with)... and him just pushing the boundaries/misbehaving.

And then I feel guilty because DD(2) just has to get on with it. But even though she is young, I just know she will be fine in life compared to DS.

I try really hard not to explain it to people. Most people try to tell me I'm wrong which doesn't help. It is such hard work getting people to understand. That's why I love this forum and ASDfriendly. People just know where you're coming from automatically.

I find it better just to focus on the smaller issues which are relevant. "She doesn't like loud noises" or "She just doesn't cope with large groups of people well". I don't feel that need to give a reason now.

I've learned quite a few strategies like that over the last few months and you will too.

Potoroo, ive given up on trying to work out what is disorder related, what is learned behaviour and what is normal 6 year old behaviour, its impossible isnt it! and usually involves a mixture of all 3

I get the guilts too, even though my two other sons are much older, 16 and 13 and pretty independent now, i sometimes forget that do still need me from time to time.

I found telling my family really hard. In fact I got my sister to tell my mother because I just couldn't bear her reaction. When DH and I came out of the diagnosis meeting we went for a coffee and I just sat there with tears rolling down my face, even though we were expecting it.
It does get better though and when he does strange things at least you have a reasonn (my DS is 15 and still does quite a few things which I am glad to be able to put down to his Aspergers.)
My mother, incidentally, still likes to believe there is nothing wrong with him so I just don't mention it and she lives far enough away not to see him very often.
You do come to terms with it, and as someone else said your child is still the same child they were the day before diagnosis.

The knack for me is to remember how many possibly useful things I can do that other people apparently can't. OK, I can't join in with a group conversation because my hearing doesn't work properly in groups of chattering voices...but I can hear a distant noise that means there's an oncoming vehicle, long before anyone else can, and warn people of it (saved a car-full of lives that way).

OK, I can get totally fixated on things and forget to listen to people and start to stim...but that same eyesight can spot tiny cracks in materials that mean there's going to be a problem with them that might cause a building to collapse, which is great for the specialist buildings work I do. And that same eyesight is great for spotting fake artwork or statues etc in an instant where experts might take weeks of tests.

I might get so focused on something that it gets really boring for others, but it means that for my work I can keep going for hours and hours and solve problems through sheer long term effort when 99% of others would have given up.

It's true that I can't handle a lot of sensory situations and can end up exhausted and in great sensory pain, but there again I can find fantastic beauty in patterns and sounds that others can't see or hear at all. Those things give me huge joy, even if my face doesn't always think to show it.

People also wrongly thought autistic spectrum people don't care about others. We usually care hugely. We're just rubbish at showing it properly. We love rules for how to show our love.

For many (not all) of us, the positives for us can balance the negatives, so please don't despair. We improve, we learn. More slowly and in a different way sometimes, but what we're like as children is not usually what we're like as adults. And services and support are getting better, too.

Have a very large cuppa. Ask whatever you need to. There's really good people aplenty here.

amberlight - your comments on hearing remind me very much of DS. His hearing is amazing - as long as there are no other distractions. So I thought for some time he was just ignoring me...

DSs is wonderful - his positives far outweigh his negatives (typical 5 year old boy behaviour aside). I guess I want everyone else to see that too, and not just the AS.

I did have a big cry - because I could only think of the worst case scenario of him being isolated and lonely. But once I got over that I realised that he does have friends, and despite him quite often ignoring him, his friends either don't notice, or don't care, because they still talk to him and play with him. (The school have been fab in supporting him - long before his dx).

Amber - another question for you, if you don't mind, about the sensory overload.

I think this happens with DS sometimes, particularly if he has had a long day with after-school care.

How do you manage this? DS has his own room that he can go to, but is there anything else we can do - particularly to cope with it once he does become overwhelmed.

Potoroo, worth trawling the internet for an online scientific journal called Ethos, which has just done a very good set of scientific articles about autism spectrum and sociability.

They have realised that many of us can manage friendships and relationships extremely well once we're allowed to do it our way, instead of having to adapt to a non-autistic way each time. The internet has for many (not all) of us been a huge liberator, allowing us to join in with groups here where we'd never ever manage it in real life. And make new friendships too.

Of course for some individuals that's not yet possible because the technology hasn't got quite to that level. I'm really hoping we can move away from an almost entirely words-based way of communicating online onto a way that allows non-verbal people to share their lives more easily too.

Sensory overload? Blimeys yes, I'm very badly affected by it. Not all of us are. Some barely notice, some are undersensitive to some/all sensory things instead.

For me, a quiet corner and wrapping something round me really helps, e.g. duvet. And having time to stim without people staring. And 'downtime' on a computer or with a favourite hobby. Not easy in a family home, but even a pop-up tent or sheet over a couple of armchairs can provide a bit of 'me space'.

Main thing is to go to 'silence' if you can -make sure we're safe, but no talking, no eye contact. The knack is to take away any and all sensory inputs until our brain wiring can 'cool down' enough to work again. It really is a sort of brain overheating problem, same as if you run an old car for too long and the radiator gives off a load of steam and the engine stops

For skin sensitivity, the body brushing or touch therapy systems can be really useful if a child will accept them.

Hope it helps a bit...

Yes it does thanks.
He seems to relax in front of the computer/TV but doesn't always respond well when we come to get him away for dinner etc

He has a popup tent at school so perhaps one in his room would work too.

I use a ten minute and five minute and one minute warning for my two men, which helps a lot. Also, I find it helps me, and them, if we use our names first...then wait for us to focus on the person...then give the instruction. If talking isn't working, they wave a hand in front of my eyes to get my brain to wake up and switch its ears on.

Two days ago apparently ds had been talking to me for several minutes and I didn't hear one single word of it - nothing at all so I'm an example of how 'single focus' we can be.

amberlight, we are so lucky to have you on here

My DS is still awaiting his offical diagnosis but is either HFA or AS. He gets overloaded too and I give him his silence and no eye contact until he comes back out of it. After school he sometimes won't talk to me for a good hour, just being in school seems to take it out of him. He too has a pop up tent, or if that's been put away, he wraps himself in my large living room rug!

Potoroo - I imagine I will feel exactly the same when we get our official DX, it is confirmation that our child will not have the idealistic life we all hope for for our children. Doesn't mean they aren't capable of great things though.

ooo, I dunno about anyone's luck having me on here - but thank you . No more or less useful than many many others, though, I'd say.

I've never tried wrapping myself in the living room rug before! Will have a go later...

PS I define 'great things' as "that which makes each child happy and gives them the best choices and chances in life". Doesn't matter to me whether the greatest thing they can do is to enjoy a sensory sensation or to write a symphony or anything between those points, as long as it's brought a proverbial smile to their faces and a sense of really belonging and being welcomed and respected in our society.

Amber,Ds has many of the strengths and weaknesses that you describe, but is unable to put it into words. I find your posts quite reassuring and a real insight into his world.

The "don't explain" thing. Just there have been a number of occasions when it would have helped for me to know a child was ASD. There have been times when I have commented on a child's odd behaviour and just being told would have explained all.

Although in at least one case, the parent explained (or actually just told me he was autistic) and I'd wished the teacher I had worked with had explained before.

Reasons it would have been useful: to understand why smiles are not returned. To understand why my small talk didn't break the ice. And to understand a child did not get the instructions and wasn't just being (naughty). Although in the last case I knew there was a boy with ASD and guessed it was him, so managed to get his attention and re-direct him appropriately.

So don't assume all people are totally ignorant, you may have allies out there you know noting about.

and...we often don't respond to 'thank you', because it doesn't mean anything to our brains. So the usual social 'rewards' may not work and we may need a very different way to incentivise us. For me, I work best if people tell me clearly what the benefit is, e.g. "That piece of work is very useful for reason X", or if I'm having a non-verbal day, a 'thumbs up' sign. Somehow it makes much more sense than someone saying the word 'thank'. (What IS a thank??!)

Poteroo my eldest DS has Asperger's. His friends are fairly few in number (maybe half a dozen), but they are, without exception, lovely the sort of kids you willingly welcome into your life. They are thoughtful, accepting, goodhumoured, intelligent children. So is DS (even though you have to look a bit harder to spot it!).

My NT son's friends, on the other hand... ... maybe they'll improve once the normality wears off a bit.

Hi everyone,
Thanks so much for your helpful messages.
Last week I met with another mother who has a boy with AS in the same school DS goes to. It was brilliant to talk to someone in real life who understands how I feel
She was incredibly helpful and gave me heaps of practical information about local support groups.

I am feeling much more positive now. Ds was invited to a party today and behaved really well (or rather, within the norm for a 5 year old boy!) The mum (who is a friend) had told me that we could use another room as a quiet place and I think DS was more relaxed knowing he had somewhere to escape to.

Amber - you have given me some great insights. What you said about the listening ears really rang true for me. I'm sure I will think of lots of other questions for you in the coming weeks!