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Does anyone fid it helpful to be told "you would never know!"

(12 Posts)
lisad123 Mon 15-Aug-11 08:47:33

I have 2 dds with autism, and we work hard to manage them both and try and make sure they arent shut in the house and have access to everything every hcild their age does. However, some people seem to think its helpful to say "oh you would never know, are they sure?" I mean seriously angry
We were at musuem the other day and the teacher there asked what we had been up to, we explained we had been to horse riding therapy and camp with our support group, and turns out she knows some of them. But then proceded to grill me on "how asd effects my girls as they seem normal" hmm
2 mins later DD2 had a huge meltdown as she couldnt be a cat (dont ask!) and trying to push me down the stairs, hit and screaming at me.

Im not sure why it bothers me so much, but it does. I would never question if someone told me they had an unseen disorder, tbh i think its rude

if I had a pound for every time I was told 'but he looks so normal...'

Yes it irritates me immensely!
We are in a position where sometimes my son 'looks normal' and sometimes he doesn't. He has ASD and moderate learning difficulties. He also has mild physical difficulties and wears full AFOs. If he is walking, wearing jeans, not using a wheelchair (he rarely uses it these days) people treat him VERY differently to when he is in shorts. AFOs visible etc. People are much kinder to him when his disability is visible.

When it's not.. people just think he is a bit odd.. he's 14, very tall and dyspraxic and his speech is a bit slurred and he stands too close, his voice isn't pitched right.. and I get the impression people think 'weirdo' sad

I also get 'but he isn't autistic.. he is friendly/makes eye contact/isn't flapping (choose your stereotype!) ..UHUH.. every stranger is an expert on the triad of impairments, apparently!! It makes me want to lock them in a room with him for a few hours so they can listen to his obsessions grin or try deviating from his routines and see for themselves....

One of my son's class mates has Down's Syndrome and his Mum has said many times that she thinks she has a far easier time..because his disability is obvious everyone cuts him some slack. Invisible is not better for most of our childrensad

EllenJaneisnotmyname Mon 15-Aug-11 09:49:56

The occasion that irritated me the most was when DS2 has a chest infection and I was at the out of hours doctors with him. He was very subdued, had a high temperature and was barely talking. The bloody OOH GP said, "I see from his notes he's autistic? Are you sure? He doesn't seem autistic to me." Aaaargh! angry

Stupidly, I felt the need to try and explain that he was non-verbal at 4, had no eye contact, flaps and spins, has meltdowns, has a Statement, used to go to special school, still soils daily, but I just gave up. She didn't believe it, said they are too quick to DX these days...

colditz Mon 15-Aug-11 09:53:13

It's irritating because it negates the FUCKING HUGE amount of work we have done to make our kids 'seem' as normal and average as possible.

I get told "All eight year old boys like computers, though"

Yes, yes they do. However, not many will sit with a screwdriver at 3 am on a Wednesday morning, trying to take the kitchen door off the hinges because Mum has padlocked it, the key is under her pillow, and the computer is in the kitchen.

Vinniesbisqwits Mon 15-Aug-11 12:26:55

no its really annoying just because hes on a good day being quiet and not stimming they say that , come back in half hour and see him when his game wont load and his brother interupts him in his continious chatter they wouldnt say it then when hes in the game shop cant find a game any game and is in full meltdown with people stepping over him just because someone looked funny at me mummy, as you say were work very hard and helping the 'fit in' to please others and we get told oh my friend relative brothers sisters cousins aunts dc is much worse your dc seems fine aggghhhhhh, then like ellen says you feel the ridiculous need to explain yourself and your dcs health and history like its anyone elses business and everyones an expert/critic with helpful ideas OF THE BLINKIN OBVIOUS for you to try angry .... ergo HOW ABOUT STICKERS HAVE YOU TRIED THAT no oh thank god i bumped into you that would NEVER of occured to me doh.

IndigoBell Mon 15-Aug-11 12:26:59

they are too quick to DX these days - that is the one that really get's me.

Someone at work said it to me and I haven't spoken to him since smile

I'm actually pleased if people say they can't tell DS has ASD. After all, that is exactly what I'm aiming for. I don't take it as meaning 'does he really have it'...... (But then I normally do follow that comment up with a potted history blush )

utah Mon 15-Aug-11 12:35:49

After the being "normal" comment it is the "what his gift" or the "the autistic child I know is now....." tip me over the edge

Vinniesbisqwits Mon 15-Aug-11 12:39:32

as Ds is 11 now and over the years I think because of lack of help from HCP and LEA/School he became worse than he might IYKWIM, so the gap between peers is so wide and evident it never happens anymore , but if it does on odd rare occasion , its just because they see him concentrating on ds or computer so assume nothing wrong with him , what they dont understand is hes doing thet to block everything and everyone else out with his sensory issues and hes obsessed with those things.

TalesOfTheUnexpected Mon 15-Aug-11 14:00:17

If anyone mentions "Rain Man" or "card-counting" to me again, I swear I'll flip!
"He'll make you a fortune in Vegas when he's older"

Yeah, course he will. Stooooopid people.

Just sayin'.....grin

flyingmum Mon 15-Aug-11 16:59:53

I love it when people tell me that they would never know DS1 has SEN. I was dealt with incredulity by a couple we stayed with when we told them that he was an aspie (they have a friend with a child with aspergers). It take it as a compliment to DS1 and sort of to us and to all his therapists that he has socially integrated, not bobbed or done anything wierd and is operating 'normally'. I get cross with him when he is overtly autie which is horrid of me but people, as we all know, are judgy judgy and cats bummy and I've had enough of the comments over the years ('does he do parties' - the one that particularly sticks) not to want my lovely, kind hearted, sweet natured lad to have to come across this. He thinks I'm just nagging but I've pointed out to him that he wants to succeed in the mainstream world so he is going to have to behave in a mainstream way. He doesn't have to cover up that he is autistic but people have stereotypes and sometimes life is easier if you don't have to cut through other peoples' prejudices before being accepted. It's coming. He's just been absolutely fab waiting for his sailing course to start and I knew he was anxious and could potentially start bobbing and weaving but he didn't and spoke to a really NICE GIRL grin.
I do think that some people tell you that 'you would never know' because they are trying to be positive and nice. Of course it is deeply pissoffing when it is a professional who should know better.
I have to say I thought the best advert for autism I've seen recently was the lovely boy on a recent edition of DIY SOS. He was so lovely and delightful. He coped superbly (with obviously a lot of input from mum) with the changes in his house and was so fab that actually all I could think was 'why aren't all children like that'. Anyone watching would have had many preconceptions about autism blown away but conversly wouldn't have been given any insight into the hours of tantrums, anxiety, stimming, etc that he undoubtably has and his mum and us with ours have gone through. Sorry really badly expressed but hope you can make something out from that jumble.

coff33pot Mon 15-Aug-11 20:11:24

Yes it winds me up. And when they say "you wouldnt know it would you" the answer I would give back is well yes I do know because I just bloody told you.

I tell them he is being assessed for autism because it saves the wierd looks they give him when he wants to ask question after question about their enviroment. The way he holds his hands over his ears if people are suddenly laughing loudly and he cant cope. The way he runs off crying because he thinks the joke is on him.

If a person had a false leg and had jeans then "you wouldnt know" because it is covered........just like aspergers...........it can be covered to a degree.

And as for fitting in and being accepted. Well.........I would rather my son wasnt accepted by false asuming people or peers. I dont want my son hiding the true person he is. Thats just me though grin being more aspie than......"you wouldnt know it would you" grin

bochead Mon 15-Aug-11 20:51:31

I had one friend who shut up sharpish on this front earlier this year after she got a 1/2 hour lecture on the cockroach he'd found in her kitchen. he told her the species subtype, average lifecycle - David Bellamy couldn't have done a better job. She kinda looked stunned for a full 5 mins after he'd finshed his monologue and then said "errr yer I see what you mean now about his obsessions".

To be fair I had warned her re the cockroach obsession before we arrived, but she'd never seen him in full asd "flow" on his chosen subject before.

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