appropriate time to tell child of dx?

[loulou]

Hi everyone,

 

Kai (7, ADHD,ASD) has until now (i think) been completely unaware that he is "different" from other children.

 

He started at a special school in September, after being at home with me for 18 months. He has had extremely low self esteem for a long time. He seems generally "happier" and more bubbly since he started his new school.

 

However, he has been having loads of meltdowns recently, over the smallest thing. After he calms down, he cries and cries for ages. This last week, after a meltdown (in which he is very destructive and violent), he has been begging for someone to help him. He keeps saying, "Someone needs to help me. I'm becoming evil. It would be better for me to be dead." and "Why did you have such a bad baby mummy?". I kkep telling him that i love him and he's not bad or evil, but he just says "Yes i am".

 

It's breaking my heart and i don't know whether now is the time to tell him about his diagnosis. I don't want to mess up and make things worse, but i think he is so confused.

 

His vocabulary is way ahead of his years, but his understanding is way behind. I'm not sure how to tackle this one.

 

Any advice please?

 

Loulou x

[stressed out mum]

Hi Loulou

 

My heart goes out to you and Kai <'>

 

I have battling with myself since I read your post and have still not come up with anything constructive to say, although seven does seem very young to me.

 

Just felt I had to reply because you sounded so down.

 

I am sure that when the knowledgeable members come online you will receive some sound advice.

 

Until then <'>

[bid]

I can only tell you what we did with my son...I wouldn't feel comfortable advising you, as all our children are different

 

He was diagnosed with Dyspraxia at 6, and we told him after a few months because he had to stay in hospital on 3 separate occasions for various tests. We were concerned that he might imagine all sorts of scary things, so we felt the truth was best for him.

 

He then had his AS dx at 7, and we again told him for similar reasons...more appointments, a Shared Carer from SS, OT and Physio sessions, etc...

 

You would have to ask Auriel whether he thinks it was right for him (if you dare, having seen his recent 'off-the-wall' posts! ).

 

I still think we did the right thing for our son, but as I say I wouldn't presume to advise as all children are so different.

 

Good luck...not easy at all, I know!

 

Bid <'>

[Zemanski]

we felt the truth was right with both kids from the start; we felt they needed to know why they were going to doctors etc so when diagnosis came it was a natural step to tell them and we were very careful to explain what everything meant to them in terms they could understand. We've tried to upgrade the explanations as they have grown.

 

For Com our explanation at 8 was that AS meant that his mind was a bit different from other peoples and this meant he would be really good at some things but some things he needed help for because he needed to learn in a different way from other kids - it was fairly obvious what sort of things we were talking about. Knowing it was AS meant we could find the right ways to help him (having experienced lots of strategies that didn't work this made sense to him).

 

As Bid says, every kid is different; Com (13) at the moment doesn't like to talk about AS and autism but he knows what's what so we leave him to make that decision (I think he would find it far more difficult to tell him now than when he was in primary school), other times he has asked questions that have been quite perceptive - he knew more than we gave him credit for quite often.

 

try the resources thread - there are some books for children coming to terms with diagnosis

 

Luke Jackson, in his book, said he was diagnosed at 7 but didn't find out about it till he was 12 and he wished his mum had told him before because he already knew he was different and he felt it would have helped him to know why.

 

Zemanski

[oracle]

My two have known from the moment of dx. Matthew was only three years old so he clearly did not understand but he has grown up knowing he has autism and it's just something he never questions. With David it was a little different as he was 13 and we had spent 10 years looking for the answers to the questions. But David found the dx a great relief.

 

I agree with Zemanski I always tel my two the truth because it is what works for us as a family - but everyone is different.

 

Carole

[lancelot]

Hi LouLou,

I can really sympathise, as I'm wondering exactly what and when to tell C (now aged 9). We've so far explained that everyone's different, that his mind works along different lines to a lot of other people, and that he finds some things easier and some things harder than other people. He finds that easy enough to take in, as he also has different physical reactions to heat, tastes, smells etc. (we did a blindfold Taste Test once, and found that he can distinguish red pepper from orange blindfold, whereas his brother can't tell apple from cucumber!).

 

So far, though, we haven't given his problems a name. The reason is that C does now have quite a lot of social contact with other children his age, and frankly i don't trust their reaction to being told he has a 'syndrome' or a 'disorder'. (Plenty of adults react pretty funny ways, after all.) I can imagine he might tell his closest friends and they would garble it and pass it on, all ending up in a lot of teasing. Sorry if I'm being overly negative here...

 

When I tried to explain some of this to his younger brother (Mr NT bundle of resentment, just at present), he rolled his eyes and said 'Yeah yeah, he's got a weird brain, so what, who cares?' Erm, do you think that's a good sign or not?

[Zemanski]

we've never had a problem with friends knowing, Com hasn't discussed it with them but I've told a couple (Com says he is OK with that) when issues have come up and they have been great about it, I think they just take it on board and forget it, but then they are mostly pretty sensitive kids and have known Com for years.

 

As for other kids, some bully him cause he's different, giving it a name (all the kids in his class know) has made no difference and they don't seem to bother to use the term AS at all, never mind in a negative way.

Some (just a few) though have been more supportive because they know why he has so much support when he is so clever which I think was causing resentment before.

 

there are so many angles to see this from

 

Zemanski

[lancelot]

Hmm, thanks Zemanski. I'm going to carry on pondering it for a while, as it can't be unsaid once said. Some of C's friends (well, two of them!) are lovely, steadfast, sensible, sensitive kids, but his current 'top' friend looks to me to be anything but. I may be misjudging the boy, as I don't know him too well yet (it's a recent friendship mainly held together by their joint obsession with vehicles). C hasn't had a friendship with any other boy at school before, and I'm reluctant to muddy the waters.

 

On the other hand, given the friend's wheels obsession, food peculiarities, and his parents' fascinated reaction to C's diagnosis, maybe he'd understand more than most!

 

Lots to think about...

L

[Canopus]

You also have to take friend's parents into account as well. There are a small minority of parents who take a dim view of their own kid being friends with someone who has AS or ASD because they think they are psychologically unstable, twisted in the head, or just plain dodgy and disreputable to deal with. Not everybody understands or wants to understand AS and ASD, so revealing information runs a chance of your kid losing their friends.

[kirstie]

I found that Lewis having a dx made most of the parents at his mainstream nursery more understanding and tolerant, particularly when their kids were too afraid to be around him

As Lew had his dx at the age of 4 i was unsure how to tell him what that meant for him. I have however always talked openly about it and he knows he has AS but as yet i know he doesn't understand what that means really.I have told him he has a special brain because he is a special boy. He is blissfully unaware that he is 'different' so hasn't quereied anything, yet. He doesn't know, nor does he care that other people don't like the things he likes (quite as much) and he doesn't know other people have feelings and don't want to listen to him talk about his dinosaurs relentlessley. We are of coarse working on all of the above!

Good luck, it's not easy and you can really tie yoursdelf up in knots over it. You will know whats the best thing to do, but take your time and think about how to tell him. Would his Consultant be of any help with suggestions of how to tell him?

Good luck.And it's really horrible hearing one ofour kids is feeling so bad. I feel for the wee soul so much. big <'> to you both.

Take care,

Kirstie

[DaisyProudfoot]

It sounds like it's time to tell him LouLou. Don't tell him it's AS yet, just say that because he is a very intelligent boy sometimes his brain works differently because it is too busy with other things and that can make him frustrated sometimes.

 

Reiterate that he is not evil and eventually he will learn to control all these "rages" but in the meantime you will be there to help him. You say his understanding is way behind - for a child to believe they are evil and ask for help would suggest otherwise.

 

My son was 8 when we told him. We just told him he was Autistic which meant his brain worked differently to others but that he wasn't stupid etc etc. I don't think my boy understands completely but I bought the whole family Autism Awareness wristbands so we can wear them and he knows there are lots of other people out there like him, he is not unusual.

 

Keep strong

Daisy

[LittleRae]

Hi LouLou

 

I am in the same position. My DS is 9 (almost 10) and dx when he was 8. We didn't tell him then, as he was going through pretty much what your son is at the moment. I felt at the time that it might compound matters if he thought there WAS actually something 'wrong' with him. He too was convinced he was bad and should die. So we waited..

 

Now, we still haven't told him - I've put it off when things are good - why upset him? Now, however, he's having major upsets at school especially over his Maths. He can't seem to grasp the longer multiplication and tries to multipy 94 by 15 in his head instead of breaking it down. He's then convinced he's stupid - heartbreaking in a child who is in the top group in his class and gained a very high score in Maths (Logic) for his Gifted and Talented program.

 

Looking back, I sort of wish we'd mentioned it earlier - it would have been easier in the long run (although I'd have waited for a time when he wasn't upset). The next time he mentions that he's stupid I'm going to use something along the lines of Zemanski's explanation - some people's minds work a bit different from other peoples and this means he is really good at some things but some things he needs help with because he needs to learn in a different way from other kids.

 

I won't mention AS, but hopefully ithis explanation will make him feel better.

 

I have my suspicions that he knows a little anyway. He has read Kathy Hoopman's books and has mentioned that he shares characteristics with the character in the story. I also bought a book about telling a child about AS and forgot to put it away. When I came back into the room it was turned upside down - I took that to mean he didn't want to talk about it.

 

Sorry, rambling a bit here and not giving much in the way of advice. Every child and circumstance is different. The point is to tell at the right time, but in my case, I think I have put it off just to make things easier for me.

 

Take care. Hope you make the right decision for you

 

A

Edited November 8, 2005 by D's Mum

[loulou]

Hi,

 

Thanks everyone for your replies. This really is a tough one isn't it? Today Kai's had more meltdowns and really hurt me by punching me in the head whilst i was driving .

 

Afterwards he kept saying, "Mummy i'm so evil. There's something wrong with my brain. Lets just die together and everything will be ok."

 

I have got an appiontment with CAMHS next week. I'm going alone so i can discuss things properly. Hopefully they can help (won't hold my breath thought.)

 

Loulou x

[Zemanski]

when we told Com his diagnosis he was in a really bad way and we were worried he might react badly but he knew so much already it really wasn't an option to hold it back.

In any case, he was present when we were given the diagnosis so we thought he probably knew already although he was completely unresponsive with his head stuck in a gameboy he found on the consultant's desk - (5 years on, the consultant remembered and removed all electronic toys before Com was brought in!).

 

In fact, although he appeared to become more affected by the autism for a while (more stims, etc) he actually relaxed considerably and stopped wanting to die.

 

In terms of telling friends we are very, very selective and most parents I tell are interested rather than negative.

Also we're talking about teenagers here, not 5 year olds.

I did tell their parents when they were little and I know that they have discussed Com's difficulties over the years with their children so the couple I've talked to were well prepared to accept his AS - one said to me, 'well, I know all that, I just didn't know what it was called', which was pretty much Com's response to his diagnosis. I think Com was about 10 or 11 when I told his first friend.