DS diagnosed with Aspergers today

[unfitmother]

It didn't come as any sort of suprise, I still went home and cried though.
I went away with a load of leaflets on the NAS (my sister works for them!) and that was it really.
I'm left feeling 'now what'. DH and I need some time to come to terms with it before thinking about discussing it with DS who is 11.
Any wise words?

I have no experienced advice, but I will say - he is the same boy as he was this morning.

Now you just have something to work with

Some wise words, yes.

Congratulations, you've got a specialist. I know it's a heck of a shock at first, but we're not that bad, honest. .

Einstein. Leonardo da Vinci. Bill Gates who owns Microsoft. David Bellamy. All strongly believed to be AS. I'm not saying your lad will be the same, but it shows what can happen.

Get the book "freaks, geeks and asperger syndrome", available from NAS or Amazon or any good bookstore etc etc. Not a lot of money, and brilliant, written by a lad hardly any older than yours, explains a lot from our point of view.

Look for his strengths. Consider what he can do better than anyone else (and there's almost always always something). Learn all you can, so you can help be his advocate in life until he's able to advocate for himself.

And keep talking to everyone here. They're lovely.

Thanks Flamesparrow, that's exactly what the pychiatrist said.

how you feel is exactly how many of us have described feeling post diagnosis.

It hits you hard. we often liken it to grieving. Like flamesparrow said...he's the same little boy.

My ds's are 9, 11 and 14...ds2 & 1 are diagnosed AS and ds3 is being assessed for it.

How aware of what others notice about his behaviour is your DS? what i'm trying to say is...if he is noticing that others are different to him...or that he struggles with friendships etc...then telling him about AS could really boost his self esteem. (my 3 all suffer bouts of depression which is reduced when i can sit down with them and explain to them why they may be feeling how they do...and it's easier cos i use AS strategies with them- such as Social Stories to explain'/talk through difficulties they have with peers at school)

There are great books around that are written for the child to read...which explain AS and if you want some titles...please ask!!!

however...if he is blissfully unaware about all this then others on here may be able to advise you better- as i know there are some on here who waited longer than i did to explain their child's SN to them...

Do you have any other children?

Even when you expect it it comes as a huge shock, I felt so guilty as it was obviously something i had done (of course it wasn't but it's quite normal to feel like that). DS1 was diagnosed 8 years ago and for us it was the best thing ever, we could finally understand his difficulties and work in ways that made it easier for him to cope. Yes a diagnosis can be heartbreaking but it also signals a new start. Huge hugs.

I have a 7yr old DD who is very unAS-like!

DS has just wondered recently why he and the other ASD kid in the class have been to the high school on their own. I didn't really anwer him. Feel I need to discuss it with him before he starts high school in Sept.

like amber said...there are many famous SUCCESFUL people with AS....

my ds1 even actively searches on internet for musicians who claim to have AS as he is really into guitar & keyboard at the moment.

unfit- that highhschhol thing- was that the 'extra induction' for SN children?

my ds2 goes up this sept- and he has 3 visits starting next week - i've told him it will help him as there are not so many on the SN induction visits...

what worries you most about you son and AS...and school???

My ds2 's worst problem which i am dreading at secondary school- is his inability to ignore anyone- and not react- he is so easily provoked and reacts with full blown tantrum(lies on floor still) or will fly into violent rage- and i am scared for his/others safety.
He is the 'perfect child' if he does not have to intereact.

DS has the exact same problem, he cannot cope with being teased, he loses it completely and will thump or kick the perpretrator.

My

Oops.

Hello unfitmother. My ds was diagnosed 2 yrs ago, and I am still trying to get my head around it. And still sometimes in denial.
I wish that i had been a mumsnetter at the time of diagnosis so hope that you are helped by the support on here. Instead DP and I were sent away with the Tony Attwood book (which I found really really depressing, although I know many rave about it) and a 4 week wait for our next appt for answers to some of our many many questions.

Sorry, don't mean to hijack the thread but it may be good to know that you are not alone.

We have been advised not to tell our ds (now 13) until he is more 'stable/mature' as he has had periods of depression. I agonise over when that will be, and whether it would help him now to know about AS or whether it would just tip him into desperate state.

So Mum23ASD i would definitely like to know about the titles. Of course i should have it all at my fingertips 2 yrs into diagnosis but as i said there is a degree of denial and I simply cannot address this with the vigour i approach other life problems.

Of course i know all about the famous/gifted people with AS. I just want my boy to be content within himself and comfortable with friends.

Sorry, I have hijacked afterall, unfitmother. Will have a good think and try and come back with some advice from my experiences.

But has been good to make contact with this thread - a new start for me as well, so thank you for starting it.

But definitely wait until all has sunk in before deciding on line to take with your ds.

It's difficult to explain ASD to those that don't have it.

I didn't respond with violence as a child, but I can see why some do.

Imagine a world where the "volume" is set to maximum, for everything.

A whiff of perfume or aftershave is like being in a smoke-filled building.

Clothes feel like sandpaper.

Small noises can't be filtered out. Loud noises are terrifyingly loud.

Lighting is perhaps impossibly bright/flickers in a way that cuts across all concentration.

People wave their arms about and their faces contort into all sorts of shapes for reasons they never say. Then when we don't understand or didn't switch attention to them fast enough, they often shout, which makes it even worse. It takes a long time to decode it all.

Being touched is often so 'painful'/scary, even fairly light touches.

Unexpected events or unexpected changes in our world are a total shock. We just can't work out what happened.

Imagine coping with that every day, all day.

Some kid knocks into you, and it becomes "the final straw". The lad just can't handle it any more. I used to shut down - just go completely blank. It was my way of coping. It still is. Others respond as they would have done as toddlers - wild behaviour that needs help with controlling it, and help controlling the 'volume' on the world around them.

It takes a whole-school approach to really make it work. A quiet zone or room where we can just unwind, away from people for a while, until the noise/sensations die down to a dull roar instead of a hurricane. A sense of routine. Classmates who are aware of the sensitivites and don't use them as a way to bully the others.

Your local autism charity can be a source of good support, too.

Ww're very lucky in that at our local high school has specialist facilities for ASD. We would have been applying for a place there anyway and all his classmates are going. There is a an autism resource base in school.

Ds is generally happy, he only gets down when he loses his temper. I'll get some more advice from the NAS before I think about what to tell DS.

Any advice on books etc. will be gratefully received.

Just thought i would say hi, dd1 is in the prosses of being diagnosed with AS, Dd1 starts school in september, now her little sister is showing signs of Autism (she's 2.4 does not talk, has started lining things up etc..) so we have to go through the prosses again with her.

I have just come to terms with dd1 having AS, i would'nt change her for the world, she's very bright but i worry how she will get on at school when others start to notice the way she thinks.

At the moment she is too young to understand that she has AS and i dread the day i have to explain it to her. I have spent the last few months trying to explain it to other people which is hard enough.

amber - thanks for that! what you wrote about bright lights really struck a chord - my ds has been drawing the curtains a lot lately and sitting in the dark and I thought it was just so he could see his nintendo better but I've just realised he does it when he isn't even playing. (although he is quite dedicated to his nintendo so I'm not ruling it out completely.) The thing is even when I think I understand what ds is feeling I have to remind myself that he is always feeling like that, not just when I'm thinking about it. (That was a bit deep - and I haven't even opened the wine yet!)

I know hearing the diagnosis is grim but in some ways it can be quite liberating, I found it a relief to just be able to say 'ds1 has ASD' rather than waffling about speech and language problems and difficult behaviour. Although it makes it seem real there was also a sense of 'see I'm not making it all up!'

I'm always telling DS off for closing his bedroom curtains will stop now!

i've just got back from tesco....so will come back to this thread tomorrow!

Amber....were you diagnosed as a child?
Your description is fantastic.

Hubby (also ASD) always prefers to be in a room with the curtains closed. I'm not so bad with it - my problem is flashing/flickering lights rather than bright ones (all depends on which bits of the brain got the triple-wiring and which bits got the dodgy bit of string connecting it).

Diagnosed as a child? Alas no. Only found out for sure as an adult. I went through most of life just being totally bewildered and scared silly, though I found a lot of my own answers (e.g. buying the books about human behaviour so I could at least try to learn body language). This is the case with the VAST majority of adults, and nearly all of the women. Only about 300,000 as-yet-undiagnosed adults to find in the UK, the NAS reckon...

Unfitmother - look to the positives now that you have the dx. It will help you access help and support that you probably wouldn't have had a chance of without it. You can use it to help your ds in many ways.

Go easy on yourself. You have a long road ahead and there are no easy or quick answers. Any strategy you try will take months before you see any effect so don't expect changes to be instant. You'll have a lot of hard work to do and your son will find it hard. Remember to show him you love him every day.

Congratulations on getting the dx - it really is a huge step forward.

unfit mother,

I'd just sit back and let it sink in for now.
i was in your position 6 months ago for ds 12.

It was really hard to think, " this is what I was expecting, but I'm not prepared".

i still have only told two or three people and recieved mixed responses, so am stepping back from that now.

It will take a time to sink in, and there are lots of supportive parents on here with loads of experience.

If you think our ds's are similar, ie; late dx and similar age, glad to talk.

off now till tomorrow.

my ds 3 was diagnosed 4 weeks ago and still coming to terms with it myself

i try to only think of the positive he is same little boy he was before dx but now he has one he will get all the help he neeeds tp progress in life

its a roller coaster of emotions each day sometimes i wonder why us why him

other days i think so what he's getting all the help needed

another day i'll think why cant you be like other little boys and have a good cry

but one thing satys the same how much i love him and determination to make sure he gets the best of everything

good luck dont be feeling guilty if you have a why me day and just take each day as it comes

dont concentrate on what he may not be able to do as no one knows concentrate on what he can do and how you can help him progress further

i still have days where im confused im sad and frustrated today being one of them

but i wouldnt change him i know it will become easier one day and just try my hardest to stay positive

Leonie I sat in the parents' room with DH saying 'why am I crying?', think it was just the fact that a switch had been thrown and could not be thrown back. Lots of relief from being able to dump 50% of the stuff that had been going round my head since DS was tiny, and focus on useful things instead.

Unfitmother, do you think it's about time for a namechange now ?

I just got Parenting A Child With Asperger Syndrome: 200 tips and strategies by Brenda Boyd from the library today. Am liking Tip3 already: Don't take it personally.

I'll look out for that book, wanted to go to the library today but it's too soon for DH.

He was initially dead against getting a dx, I have thought DS may have some form of ASD since he 2.5 so dx was merely confirmation for me but still caused some sense of grief as it means it is real.

DH unable to tell anyone yet, he needs time to get his own head around it. We had a cry in a Costa Coffee this morning, whilst dcs at drama class, and a good chat. Part of him feels that DS does not have AS. I asked him "do you agree with this dx" and he said "yes". That's a big step for him and I need to give him a bit of space and not have AS books all over the house!

I'm just looking at things on the NAS site
at the moment and as people say, letting it sink in.

Getting a lot of support here and am enjoying talking to anyone in the same boat!

BTW,name from a newspaper column that used to make me cry with laughter, 'Diary of an Unfitmother'. It was about a WOHM trying desperately to appear wholesome to the SAHMs and very efficient in her male-dominated workplace.
It was very funny!