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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

It was just a real jolt, you know?

Do you ever have it?

OP posts:

graciousenid · 15/05/2011 12:38

((((Fanjo)))) ds was language delayed from 18-20 months, he had a few few words but when he was 2.5 he became mute. It was the most distressing and terrifying experience of my life. The house was completely silent, we were desperate to hear his voice again. Two years later I still rejoice at every word, even when it is jargon or echolalia. When he lost his voice I lost my child & I'm still scared it could happen again.

wendihouse22 · 15/05/2011 18:06

I'm shocking in regard to how I talk about my son. I described him the other day to the Senco as utterly "bonkers". Of course inside, I'm very very close to tears but it was the only description appropriate.

I know what you mean about people ignoring our kids. But then, I think sometimes, my ds conversation is so off subject that I understand people just have NO idea what he's on about. If they asked him one little thing about space or planets.....they get the entire stored data he has on the universe/solar system. If halted, he gets so upset and just ploughs on, regardless of people just walking away from him.

Tragic.

I can see my beautiful boy in years to come. Standing in a street, seemingly talking to himself because the person he was initially talking "at" has backed away.

Do you think the professionals and the politicians have any idea how hard it is? How every day, there's an army of mums (and dads) getting through it, the best way they can, close to tears, bereft, jollying themselves along as best they can? And wondering what the future holds for these vulnerable kids/young people?

We should lobby for a Parent Thinktank Advisory Commitee to Parliament. I don't see how they can know what we go through.

Twowillbefine · 15/05/2011 20:24

I can go a while thinking, "oh he's not so bad" and then I see him with a friend's son of nearly identical age and the difference is rammed home. And it's in everything, in his lack of speech - getting better but nowhere near "normal", in his body language, the way he plays and the things he plays with etc. Can be quite hurtful. But have to think about all the lovely things about him and how well he's doing.

Jennylee · 15/05/2011 23:09

sorry you are feeling like that, it is just a lighthearterd thread. It must be so hard, my son was never non-verbal he has Aspergers but I get like I want to cry from reading about friends NT kids the same age as my ds having 'amazing birthday discos' or passing their music exam with 'flying colours' a kind of screw you and your NT kids feeling and it is hard but people aren't trying to hurt me and no one on this thread was trying to hurt you either. its hard, I hate to think of someone upset.

Debs75 · 16/05/2011 09:12

Fanjo DS was a late talker (18m), by 2 he was talking a lot and learning new words, then within 6 months he was mute. I was beside myself when we realised something was wrong and I would talk to him constantly to encourage him to talk.

My mum and Gran used to say 'if only he could talk' as if the ability to talk would take away all the problems autism brings. I wish it would but now he knows some words he just doesn't want to use that speech to talk with us. He communicates what he needs, usually a 'La La' but it is nothing like he was when he was a toddler. I have come to accept that at 12 years old he will probably never have a 'conversation' with someone. It doesn't stop me wishing for it though.

fanjoforthemammaries7850 · 16/05/2011 09:27

It's hard isnt it debs, I just found a report from when DD was 2.5 saying she was 'beginning to talk in sentences'..now at 4.7 she just makes garbled sounds.

yukoncher · 16/05/2011 09:54

When I first looked into Autism symptoms it all came down like a ton of bricks, it was very emotional.
I realised he has so many symptoms. The hand flapping if he's feeling uncertainty. The repetition in what he says. I'm talking days to weeks of one phrase being just about all he says. The learning then completely forgetting it, like he's gone back in time mentally. and of course the screaming and blocking ears when strangers say hello.
Sometimes it is upsetting.
Just hope we can get a diagnosis as I'm sure people assume him not being potty trained is due to his parents being lazy. And we get the 'don't you talk to him much?' in response to his speach delay >:(

yukoncher · 16/05/2011 09:57

Debs my son went through an almost mute stage aged 2.5 to 3.5. I thought I'd traumatised him by moving house.
So good to hear how it can be considered as normal when you take into account the condition they live with.

wendihouse22 · 16/05/2011 10:33

Jennylee..... I know what you mean about birthday parties etc. We used to always have a birthday party for ds up to the age of 8, I think. It wasn't so much "friends" as ALL of his class - the kids he knew from school. But, that last 8th party (bowling) was awful. All the other kids enjoyed it and my son was handflapping away in the background like he had NO IDEA who they were. He was so distressed. Previous parties, he'd enjoyed. We've since moved house. We haven't done the party thing now in Cheshire but it occured to me yesterday that, he has 29 peers in his class and this year, he has not had one single invite to a party. The kids in class are great with him but, he just doesn't get invited to anything anymore.

Jennylee · 22/05/2011 19:21

its the same with my son, only my cousin invtes him round he has no friends and others his age jsut take the piss, its really bad that way.

wendihouse22 · 22/05/2011 19:36

That's the way it is, isn't it?

We went to my ds's school disco on Friday evening. Big mistake but, he wanted to "see it".....til he got there. He's NEVER been to the school disco before or indeed any extra curricular school event. It's so hard for him to get through the school day, as it is so it's a given that he'll pass o anything outside of. Anyway, he sat on the opposite side of the room from me and glared and flapped and fidgeted and I have to say, without exception, ALL the other kids tried to include/comfort him.

That's primary for you but I know it could be oh so different when he gets to secondary.

EllenJaneisnotmyname · 22/05/2011 19:49

Wendihouse, that's exactly what it's like for my DS, very supportive primary class but he's off to big school in Sept, and only 3 others going with him.

wendihouse22 · 23/05/2011 10:19

Ellen, that'll be my ds next year, Sept 2012. We're hoping to get him in to mainstream with an ASD unit provision. Good school but still, I have little confidence in him achieving a traditional education. It's such a shame, he's really quite bright. There'll be no one from his old school going up (to that particular school) though.

Will your ds go to mainstream? How come so few of his classmates going up with him? It's SUCH a worry.

GeneEyuss · 23/05/2011 10:41

Just got phone call confirming results of ADOS for my Ds 8yrs. Have been fighting with so called professionals for last 5yrs to get the right assessements done. ASD officially confirmed, very upset that it has taken so long.
Don't know what to do as am currently in an appeals process for SA.

EllenJaneisnotmyname · 23/05/2011 14:47

GeneEyuss, it's more ammunition for you to get what your DS needs. It's not going to make your appeal harder, for sure.

Are you ok? No matter how much you wanted to get it, an official DX is still upsetting. and ((((hugs))))

wendihouse, it's sad but the 'outstanding' local comprehensive where most of my DS2's classmates will be going, made it very clear to me that they are 'an extremely academic school,' and that they wouldn't support him at breaks and lunchtimes but that 'marginalised children tend to congregate in the library, and the librarian can keep an eye on them.'

Needless to say, despite the fact that I could have forced the issue, as DS has a statement, I chose not to send him there, instead to a lovely, inclusive comp 4 miles away, where I'm hoping he'll cope. At least they do lunchtime and breaktime SEN 'clubs', and have a suite of rooms in their posh new building rather than a single office hidden around the back!

wendihouse22 · 31/05/2011 14:51

Hmmm.....half term. My son is quite happy chilling at home and venturing out If he absolutely HAS to......

Saw some of his class mates today , thundering along the cycle path to the local parc to play. Three of them, unaccompanied. It brings it home that my son is nowhere near his peers developmentally. I must attend, or another adult, at all times.

He's clever in many ways but very very vulnerable.

It just brings it home to me, little things like that.....nt kids off with their mates, in the school holidays.

Ben10isthespawnofthedevil · 31/05/2011 18:58

At the playground today and DS kept asking me which piece of equipment he should go on as he couldn't make a decision by himself - and of course he wouldn't go on the big swing with all the other children due to sensory issues - hates the sensation of swinging.

Then my v. nearly 6 year old chose to play with a 2 year old who asked him to play. They spent half an hour running round chasing each other in a playground full of play equipment and other 6+ children.....

coff33pot · 31/05/2011 21:02

Yes it hurts me too seeing all the other 5/6 year olds out on their bikes around the estate but not mine. And it hurts that he just doesnt plain get it that you dont talk to adults/strangers that you dont know. It hurts when my DS is on a full meltdown and throwing things around then stops and says "i love you mum" but then still carrys on banging and crashing because it has got to be let out of his system. But you just plain carry on or crack up end of. I think what upset me more was looking back to fill in the camhs forms about what he was like as a baby. I watched a whole video of his whole first year and spent the whole day kicking myself for not spotting the oh so obvious signs that all was not well...............you basically just got to turn the hurt into positive energy into fighting their corner that is the only way I can cope with it

wendihouse22 · 01/06/2011 09:19

True Coff33pot. Don't kick yourself about not seeing the obvious in the video....I could tell, very early on. I kept asking the Health Visitor and Gp but they'd justbsay all babies are different.....let's see what happens etc etc.

Now my ds is 10. Diagnosed ASD aged 5 which was "doable" but tough. His additional co morbid conditions of OCD and Tourettes have floored us.

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