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Original poster

Do you ever have a weird moment where you look at your child and SEE the autism?

119 replies

HecateQueenOfTheNight · 14/05/2011 12:41

When normally you don't really notice?

Cos it was my eldest's review the other day. And he is now in secondary school and at his school (don't know if it is the same everywhere) they have the child in the review and begin to encourage the child to take control of the review.

And I was looking at him as he went through a statement he had prepared about things he finds difficult, and his eye contact was non-existant and he had one arm in the air, making a pincer type movement with his fingers.

And I looked at him and I thought wow, you really look autistic.

And I hope I am explaining myself well Blush

It was just a real jolt, you know?

Do you ever have it?

OP posts:
leiela · 15/05/2011 04:03

I think thats the this with ASD it's different and yet the same for everyone. my dS has always been VERY verbal ... i started stringing meaningful words into sentences at 1 year old and hasn't shut up since to the point that sometimes i want to gag the little so and so ... especially when he's asking a woman in a shop "why she is so fat" and you just want to die.

Question though i would say we noticed there was "something wrong" with our DS when he was about 7, till them we just lived in a dream world where we convinced outselve's he'd "just grow out of it" and he was finally diagnosed at 10.

Do you think the "quirk's" get worse as they get older or become more noticable because you don't expect adults to insert quirk here as much as kids therefore you see it more??

Right now my son for the most part can pass as a highly exicable/anxious/expressive 11 year old. Only people who know him well really "click" it's autism ... to the point that alot of our family including grandparents still haven't really noticed (i think they are still waiting for him to grow out of it .. teehee) So im wondering what the chances are of him having a "normalish" adulthood are ... independent living, job, family kids etc? or are the quirk's just going to magnifiy (in appearance if not actually severity) as he get's older?

fanjoforthemammaries7850 · 15/05/2011 06:52

It remains though that not being able to speak is a much greater disability, no matter how annoying 'chuntering on' is

fanjoforthemammaries7850 · 15/05/2011 06:53

Would rather my DD called people fat than was unable to express her needs for the rest of her life, can't compare it.

Goblinchild · 15/05/2011 06:59

I used to wish I could put mine in a setting without him hitting people and envied those that had children who flapped and ran around in circles rather than leaving a trail of destruction and anger behind them.
I can't understand the level of despair and frustration at having a non-verbal child Fanjo, but continuous monologuing for hours can make you wish for silence, or a padded cell.

fanjoforthemammaries7850 · 15/05/2011 07:18

Wishing for silence, fair enough...'missing the non verbal days'..bit insensitive....but I shall retire as it seems no one is getting my point, or agrees with me, and I don't want to cause disharmony.

TotalChaos · 15/05/2011 07:59

goblin - I had the double whammy - a barely verbal child (single word stage), with delayed echolalia - so having to deal with hours of monologuing mindlessly repeated telly scripts as well as the massively delayed language. I found it absolutely heartbreaking that the only time he could string together a sentence it was absolutely meaningless.

sorry you are upset Fanjo, I remember the days only too well of being desperately worried.

Goblinchild · 15/05/2011 08:04

And again TC, I can't begin to understand what that must feel like.
It would seem patronising and belittling if I thought I could.
I don't like thew fact that Fanjo is upset and feels she can't be part of this thread, but I don't know what to do about it.

Becaroooo · 15/05/2011 08:09

I can see both points tbh...

I was very worried about ds1's lack of speech at 2.5/3...not helped by a "friend" ringing me with an update every day about what new word her ds had said that day. sigh. It came...slowly. He had speech immaturity too but by the time we got the SALT appt (months and months) his speech was perfect!

However, now he is nearly 8 and VERY verbal with a VERY good vocab I do sometimes wish for 20 mins silence every now and then....that doesnt mean I wish he was non verbal, it just means sometimes I wish he would shut up for 2 mins at a time!!!! Smile

Conversations about pigs at 6.30am make my head hurt.

And I totally know what you all mean wrt giving them what they want when they do start to verbalise.....ds1 only had to mention something...food, dvd, toy, game etc and I would get it for him....not sure why..maybe to encourage more words?? To make him see the point of talking??? who knows!

Becaroooo · 15/05/2011 08:10

I am sorry fanjo is upset too.

asdx2 · 15/05/2011 08:12

Ds has gone full circle,non verbal more or less until 7 then acquired pretty much normal speech although it was always only about his interests then he got to 11 and the speech started dropping off and now at 16 he's pretty much non verbal again and silent.
I miss the football statistics, I miss the Grand Prix line ups but most of all I worry that I'll forget what his voice sounds like Sad
I think when he was talking the autism wasn't so glaringly obvious even if his posture is wrong and he is stimming.
Interestingly enough I no longer get the tuts and the stares when out and about since he stopped speaking instead I get the pitying looks which I dislike marginally more so I suppose it is obvious now.

fanjoforthemammaries7850 · 15/05/2011 08:13

Am not upset by people wishing their kids would be quiet, I can understand that.

It was the talk of 'missing the non verbal days' that shocked and upset me.

Hecate said 'and I will go to hell for saying this' so was obv aware it was a contentious thing to say, was just unfortunate I was reading it and got hurt.

Anyway I will survive, am a tough old Fanjo.

fanjoforthemammaries7850 · 15/05/2011 08:14

We get the tuts and pitying looks In equal measure..,or Dd is trying to say hello to people and flapping, I tell them she is saying hello and they just ignore her or look away. Sad

fanjoforthemammaries7850 · 15/05/2011 08:15

Also, it makes it harder for me that Dd was very verbal until 2.10 then completely lost the ability to produce words overnight..so it's a sensitive subject I guess

fanjoforthemammaries7850 · 15/05/2011 08:16

I miss 'the verbal days'

Original poster
HecateQueenOfTheNight · 15/05/2011 08:22

I apologise, fanjo, sincerely. I do remember the days before they spoke, when all it was was high pitched squeals and yells and I remember everything we did to get them to talk, and all the support we had and all the people we had on board to force langauge out of them. I've been there.

And now I face other challenges.

As do we all.

I cope with humour. I coped then with humour and I cope now with humour. I laughed as much during those times as I do at these times. I didn't find it funny and I wasn't laughing at them.

I don't mean that I wish they couldn't talk, of course I don't. I love that they talk. God knows it was long enough coming and enough people said it would never happen.

I apologise for hurting you, I genuinely thought that everyone knows and understands (and does!!) the whole 'coping with black humour' technique. It's how I've always been. When they were in nappies and throwing them off and shitting behind the sofa and I was hunting round for it, when it was a poo emergency, up went the cry of 23-19.

When their delayed echolalaia meant days filled with "BEEEEEEEEE babababa", "clifford the big red dog and tasty food now at mcdonalds" "that's asda price" "two" and so on...

we made a song.

If you don't find a way to laugh - or some other technique that is designed to give you the opportunity to laugh about it or release stress about it or whathaveyou, it will take you under.

I thought everyone understood and saw it this way and that we could throw our heads back and laugh about it all. This was obviously a huge mistake on my part and I am really sorry. I meant no offence and had no intention to hurt those still where I was and if you want me to have this thread deleted I will do. I won't make jokes about their echolalia or stims or general stuff on here any more, I promise. And I am sorry that you are upset.

OP posts:
Becaroooo · 15/05/2011 08:23

fanjo People look away and ignore her? God, that makes me so angry. Angry How hard is it to say hello fgs!? I have not had to deal with speech regression and I cannot imagine how worrying and upsetting it must be.

asdx2 "forget what his voice is like" Sad I'm so sorry.

I am pretty new to all this - so forgive me if this is a stupid question - but if the ability to be verbal disappeared "overnight" is there a chance/liklihood that it could come back just as quickly?

Original poster
HecateQueenOfTheNight · 15/05/2011 08:25

oh, and yes, "I will go to hell for saying this" yes. I know people who don't deal with this think you have to be uber serious all the time and don't get laughing about it and making jokes. That's what I meant.

People outside it, judging.

I truly didn't think about people inside it. I truly thought they'd all see it the way I do. Laugh the way I do. I thought we're the same.

That, I realise, was my huge mistake. I should NEVER have assumed that. I could kick myself for it. And I really am so sorry.

OP posts:
fanjoforthemammaries7850 · 15/05/2011 08:26

It's ok, I know you didn't mean anything bad.

I just think I'm not quite ready to see the humour as Dd is still 4 and we just got DX a few weeks ago, after 2 years of hell.

I think you just caught me at a low point, just ignore me

fanjoforthemammaries7850 · 15/05/2011 08:26

Don't kick yourself you are one of the good 'uns.

Original poster
HecateQueenOfTheNight · 15/05/2011 08:28

No, but I've hurt you, and I was just making stupid jokes, like I always do, about serious things. The more serious the thing, the more the jookes.

I HATE that I have upset you. I would never want to hurt you.

OP posts:
fanjoforthemammaries7850 · 15/05/2011 08:28

Becaroo..it can come back, but hasn't with Dd, she now seems to have severe verbal dyspraxia,..from being 100% clear before.

She is unusual though, has a chromosome micro deletion no one else in the world shares.

fanjoforthemammaries7850 · 15/05/2011 08:31

But it could have been worse, were told it was something progressive and it wasn't.

Hecate, seriously worry not, everything is upsetting me today ( coming off some ADs due to side effects when I probably still need them)

TotalChaos · 15/05/2011 08:31

becaroo - re:regression - no personal experience, but sadly I haven't heard of verbal ability coming back as quickly as the regression Sad

about your post earlier on - please don't blame yourself - to an outsider 2 things seem glaringly obvious 1)the reason your ds slept so badly as a baby was being oversensitive to sound, not that you have somehow caused the oversensitivity
2)my horribly fussy eater DS was weaned 99% on jars. It really makes no difference, and I would have thought jars were more likely to encourage fussy eating, due to desire for consistent texture iyswim

Hecate - problem is that there are 2 insides iyswim - the inside of having been through the non-verbal and verbal experiences, so understanding what you are getting at, and the inside of being in the non-verbal phase and being terrified theres going to be no significant improvement.

TotalChaos · 15/05/2011 08:34

Hecate - re:your boys - I am so close to spectrum myself (at v. least aspie traits) that I cannot tell even with my own ds whether body language/eye contact is OK never mind anyone elses. And I am so unused to "normal" iyswim, used to screwy languge development etc that I can't gauge more than the basics -eg is that child calm/not calm? etc.

fanjoforthemammaries7850 · 15/05/2011 08:36

This thread has actually done a good thing as I have decided to make a GP appointment to discuss the issues I am clearly having.

Sorry for making anyone feel bad along the way :)