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When to tell ds he is autistic.

(38 Posts)
VJay Sun 24-Jul-11 20:18:26

We've always said that we would tell ds (8yrs) when we felt the time was right, and I've a feeling that time is here.
He has been playing in the garden with his friends but when they go off to others houses or off on their bikes I don't let him go, due to lack of road sense and stranger danger. We are teaching him this all the time, but as I'm sure you know, it takes a while for it to permanently stick.
Also his 'play' is about 2 years behind that of his peers, he is quite immature. At the moment his friends don't notice (I don't think anyway), but some will and I worry about bullies.
I know I have to let him experience life more but not until it's safer for him to do so, ie; his understanding of social rules etc.
So I think I need to tell him about his autism, and that he is different and that is why I can't let him go out and play on his own away from the house. Just want to hear of other experiences really.

Ps I bet I must seem so precious to the other mums!

thisisyesterday Sun 24-Jul-11 21:09:19

interesting thread. I am not at that point yet, ds1 is only 6 and does not know that he has been diagnosed with Aspergers, although he does know that some people have autism and similar things and how that affects them.

so no advice, but will be watching for tips!

EllenJaneisnotmyname Sun 24-Jul-11 21:18:22

I think it really depends on how much your DC will understand. It would have gone over his head until really recently, so while we never really kept it a secret, we only sat him down and told him a few months ago, when he was 11. If you think your DS is upset that he's not allowed to do as much as his friends, then now may well be the right time. My DS just said, 'Oh, OK,' and wasn't at all bothered!

EllenJaneisnotmyname Sun 24-Jul-11 21:19:20

Sorry, that should have said, it would have gone over my DS's head...

VJay Sun 24-Jul-11 21:27:11

That's the one of the reasons we've not told him yet, I really don't think he will understand yet, so it may cause him more upset. It's so tricky!

choclily Sun 24-Jul-11 21:29:20

my ds is 5 and has asd, i have always told him he is special and he has autism, don't know if he understands but it does not upset him either. i do think he knows he is differant and he goes to an extra class to some of his peers. I just did not want the word autism to suddenly appear when he was older.

EllenJaneisnotmyname Sun 24-Jul-11 21:37:59

Keep it informal and mention it very casually, perhaps. Not a big, important revelation. He may not even question it, but you'll have introduced the words and can bring it up again when he's older. My DS was always told that he found learning some things difficult, if that sort of thing would help?

TheMagnificentBathykolpian Sun 24-Jul-11 21:49:58

I had this dilemma. It's really difficult, isn't it?

We told ds1 when he started to show us that he was aware that he was different. When he started to ask questions and say things that led us to believe that he would be able to understand.

Same with his arm (he's got Erbs Palsy). When he started to ask about it, he was ready to know.

My youngest hasn't got a clue. He doesn't know he's not like other children and I seriously doubt he'd give a crap if he did grin so we haven't sat down with him like we have with our eldest.

Although - when we told our eldest, the little bugger started with the "I can't do X cos I'm autistic"

X being - tidy his room, do his homework, listen...

My reply? "Oh, bog off with your can't cos you're autistic, y'big bugger! grin

Makes him laugh.

unfitmother Sun 24-Jul-11 21:56:38

We told DS when he was 11, we got him a book from the NAS at the same time.
He was curious but not fazed at all.

TheCrunchyside Sun 24-Jul-11 22:01:33

If he wont understand do you need to tell him yet? Is he asking to go out without you? If he is asking then maybe be more specific - the reason you don't let him out is not actually because of his asd it is because he is not good at crossing roads or appreciating other dangers.

Would it be more helpful to explain what he needs to be able to do before he is allowed to go round to his friends -eg. show me 20 times that you know the safe place and time to cross the road. Show me 10 times that you know what do in x, y and z situation?

if he is just accepting the situation I wopuldn't say anything but work as much as I could at building his skills

VJay Sun 24-Jul-11 22:02:06

Thanks for all you replies, they are really helpful. I like the informal approach.
I think he is just starting to realise he is different. I will see how this progresses.

VJay Sun 24-Jul-11 22:05:05

Cross posts there crunchy. I did go through the reasons why I can't let him out tonight, and I like you suggestion of getting him to show me he can do these things. Thanks smile

MissKittyEliza Mon 25-Jul-11 13:33:26

My ds is ten. ASD dx at age 4.

He's known for two years because he needed to know. He could tell he was different.

drivemecrazy63 Mon 25-Jul-11 15:10:40

we told ds when he was 10 he didnt understand but had been asking whats wrong why am I different and saying he hated himself because he was stupid so it was overdue . we got a book called all cats have AS which explains it pretty well for a dc he loves animals so it covered both areas as he understood cats personalities.

drivemecrazy63 Mon 25-Jul-11 15:14:19

grin @ TheMagnificentBathykolpian ds has been saying that lately with sad doe eyes i cant clean my room, take my plate out, understan you cos im autistic little sod sausage

TheMagnificentBathykolpian Mon 25-Jul-11 15:27:16

Not daft, are they? grin

Makes me laugh when he stands in the middle of the room and says "I can't find X cos I'm autistic"

No son, you can't find X cos you haven't opened the bloody drawer to look! That's not autistic, that's ruddy MAN EYES!!! grin

VJay Mon 25-Jul-11 16:08:45

grin thanks and I can see ds doing just that too.

He's not mentioned anything today but I know we will tell him soon.

Claw3 Tue 26-Jul-11 08:12:34

Ds is 7 and i was wondering the same thing, when to tell him or whether to tell him at all.

I like thecrunchyside's thinking.

TheMagnificentBathykolpian Tue 26-Jul-11 10:15:28

Yes, me too. I'd love to be able to do that. Do it ten times consistantly and you've proved you can do it, so I'll let you do it. I love to do it like that, but I am just too frightened to take that chance.

The problem with autism is the total unpredictability of it. They can show you a hundred times that they know what to do.

And the the 101st time they will do something else entirely.

Because something happened that was unexpected. Something triggered them.

My eldest, for example, is calm and sensible. You'd think that he would be able to go out alone. Most of the time he would be. BUT. if something happened to frighten or anger him, his ability to manage his own safety would go right out of the window.

And so he cannot go out alone. Ever. Because I can't guard against that something happening which would trigger him to go into one and run into the road and get killed,for example.

So it depends if you have the sort of child who, if they have shown you a few times that they know what to do, will always be able to do it. But what if you have the sort of child who 'knows' how to do whatever when calm, but in an emergency, in times of stress or if there is some sort of adverse outside influence, loses that knowledge?

EllenJaneisnotmyname Tue 26-Jul-11 10:30:31

Magnificent, I think you just have to take that risk, almost in the way you do with an NT child. No-one really knows how any child will react in an emergency, it's just more likely to be in an inappropriate way for a child with ASD. But I still feel that if you don't let them make some of their own mistakes and take some small (fairly innocuous) risks they will never have the opportunity to show you what they can do. Obviously, it's a personal judgement call and you know your child best, but one time in a hundred may be an acceptable risk?

TheMagnificentBathykolpian Tue 26-Jul-11 10:56:56

I daren't. I'm just too frightened.

Not when the consequences of taking that risk may be severe.

What if he gets agitated and run over by a truck? That's not worth a one in a million risk.

What if he's out at the park and a group of older kids turn on him because he's not 'normal' (I hate that word)

I'm just too scared to take that risk. I'd never ever forgive myself if something happened to him.

I want to protect him forever blush

EllenJaneisnotmyname Tue 26-Jul-11 11:07:14

((((hugs)))) Magnificent. How old is he?

TheMagnificentBathykolpian Tue 26-Jul-11 11:15:09

He's 12. I don't mean to be pathetic about it grin I think I am possibly overcautious.

I am just, well, I just think of all the things that could happen, from the minor to the fatal, from the almost certain to the about-as-likely-as-an-alien-abduction. Swims round in my mind.

I know that it's the wrong thing. He HAS to learn to function in this world or he will require full time care for the rest of his life.

I am just too frightened to take that first step. Take that first risk. I'm terrified. And I'm feeling that way because it's getting closer. He's growing up. And I want to protect him from the world forever. And I can't.

You know, I tell other people you can't! I tell other people that this is the world they live in and you have to equip them for it. And when it comes to my time, what do I do? Turn into a steaming great hypocrite!

VJay Tue 26-Jul-11 11:25:58

It is really hard isn't it.
Ds hasn't said anymore since Sunday, so haven't said anything to him yet, but I know it's coming. We are going to wait until he starts questioning us more and we will start telling him then, in the meantime we are going to prepare ourselves with what and how to tell him in a relaxed way.

EllenJaneisnotmyname Tue 26-Jul-11 12:13:32

Magnificent, DS2 is 11, he's only this year been allowed to walk home from school on his own. I did the backward chaining thing, walked with him and let him cross the last road by himself to about 6 months, than cross the last 2, etc etc. No big steps, but now I'm confident he can do that I can let him try other small journeys on his own. He came back from the shop on his own for the first time last week, a journey that is very familiar so I didn't feel the need to backward chain. So nothing too scary, not going to the park on his own, he'd need some friends for that! It does depend on their level of understanding and ability, but DS2 will be catching the school bus with DS1 from Sept so I had to get there!

Sorry for the hijack Vjay, but it's sort of along the same lines. Backward chaining is a really useful technique for building skills (and your confidence.)

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