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Original poster

why can't people understand?

21 replies

genieinabottle · 12/08/2010 20:39

My DS is 4.9, he has asd.
Just been on a holiday abroad to visit family and frankly it has been painful. Sad

Relatives and friends of the family alike making all sort of ignorant comments about my DS.
Why do the feel like they have the right to comment on the things he does and the things he doesn't.
I find them incredibly rude and ignorant.

No one took the time to engage in an activity with DS, apart from the odd 2 minutes interaction, even my mum who was always busy.
No one took the time to speak to him, to ask him questions, to have a little conversation with him.
It would have been hard as DS doesn't speak french and no one spoke english apart from my sister, but even she made no effort.

But everyone had something to say about him!
From 'he looks just normal to me, you're sure he has autism?' to 'omg! he is just so bad, the shop assistant is watching us now...tell him to stop this now!' during a meltdown in a shop.

If DS kisses someone, smiles or looks at them...he can't be that bad! surely he can't be autistic!
If DS does something quirky, refuses to cooperate like looking at the camera and smiling in a nice natural instead of his squeezed eyes and exagerated grin... he is doing it on purpose, or we're not strict enough with him!
If DS is heard saying 'hello or thank you' then omg! he can talk!, if he makes noises and do the hand dragging thing and i ask him to talk, i'm obviously asking too much out of him because he isn't quite 5 yet!

A friend of mum even asked me if we intend to keep him with us or put him in an institution when he is older??? Angry

I'm just so so fed up with the ignorance that is out there and the sheer nerve some people have to comment when they know nothing about my DS and how ASD affects him.

Angry Sad sorry for the long rant.

OP posts:
Marne · 12/08/2010 20:45

We get the same (from family and strangers) the 'oh they look normal to me' and 'she hasn't got autism, she's just naughty' Angry.

I wish family members would take a few minutes to research ASD before comenting on my dd's.

So many people make coment when i tell them my dd's are autistic such as 'oh Autism, is that when a child is naughty and out of control?'.

Luckily more people are becomming more aware of ASD and there are more understanding people out there, lets hope it improves as our children get older.

Original poster
genieinabottle · 12/08/2010 20:59

Yes i agree more people are starting to become more aware here in the uk i think, but i feel there's no hope for my french relatives.

Honestly i have never heard so much rubbish thrown at me than during the two weeks we were there.
Mum had told all her friends about the dx and the comments kept coming.

I used to believe in 'educating' the ignorance and trying to explain what ASD means for my DS but now i feel like i'm wasting my time, and that maybe not telling anyone about the dx may just protect me and him as he gets older and his understanding increases from the stupidity all around us.

OP posts:
Spinkle · 12/08/2010 21:19

I feel cross for you.

Surely your family still could've treated him like a human being?

I dunno, people watch 'Rainman' and think they know all about it...

FWIW I think you are incredibly brave to travel abroad with your ds. I wouldn't even entertain the idea myself!!

IndigoBell · 12/08/2010 21:23

I totally sympathise. I have enough doubts in my own head about my parenting abilities - I don't need the rest of the world commenting on DS!

It's so hard when it's your own family that aren't understanding. I was thinking of not talking to my Mum again - but then I realised that was just stupid, and have instead just resolved to never talk to her about the kids. Just idle chit chat about the weather...

HumphreyCobbler · 12/08/2010 21:24

I feel cross for you too. they are his family, they should want to interact with him and understand him.

sugarcandymonster · 12/08/2010 21:28

Oh dear, they were French?

I don't want to offend anyone, but the French are well known for their psychoanalytical view of autism. It's all about separation issues, according to them Hmm .

Although, then again, my family aren't French and are also just as unhelpful as yours!

Original poster
genieinabottle · 12/08/2010 21:49

They were just quite happy with the odd moment of giggle with DS or asking him to give a kiss which he obliged each time so he wasn't that bad!

And nobody went out of their way to do any activity with him.
A towel was laid accross the sofa (so that he doesn't scratch it with his little cars) and he was left to get on with it or watching the tv.

DS'dx is recent, only 7 weeks ago, yet Mum didn't ask me any questions about it, or what the plans were for DS when he starts school in september. When i tried telling her about it, she gave me the impression that the susbject wasn't choice and that she didn't want to hear or talk about it.

I just would have like for them to see DS just for who he is, with his strenghs and weaknesses, and to simply accept that he has autism and isn't a naughty kid with lots of delays (as my bil said) who is badly parented.

I guess that was too much to ask. I'm bitterly disappointed.

OP posts:
IndigoBell · 12/08/2010 21:51

Do you have any other children? Are they equally appalling to them?

Original poster
genieinabottle · 12/08/2010 21:54

My 2 year old DD was there too. No stupid comments were made about her though.

OP posts:
Original poster
genieinabottle · 12/08/2010 21:56

I think they do love DS in their own way, but they just can't accept the asd.

OP posts:
5inthebed · 12/08/2010 22:13

Having family members not accepting the DX of your child is hard going. They won't change their attitudes because they are either in denial or just don't understand what autism is. I hate the whole "but they look normal" line. What do they expect?

My MIL is in total denial about DS2 having autism. She just thinks he needs a good smack to keep him in check Angry and that he should b on medication to get rid of it. She just doesn't listen to anything I tell her.

3Trees · 12/08/2010 22:27

oh, DS does that squeezed eyes exaggerated grin EVERY TIME I ask him to smile.

(((hug))) for your trip, sounds painful.

My parents, when I told them school had flagged potential ASD with DS (i am a bit dim and never realised that his behaviours were not every three year olds behaviours) told me that there was NO WAY he was autistic, because he's so bright, and he talks and so on.

"Anyway, these days, teachers just say that about anyone who doesn't do as they are told."

We haven't spoken about it since. LUCKILY they don't see DS often (which is also why they haven't seen many examples of his behaviour)

Makes me feel very sad. Not having family to talk to about this stuff.

Original poster
genieinabottle · 12/08/2010 22:48

Similar situation here 3Trees.

Parents live in France, don't speak english so can't even begin to see the delays DS has with his language, and they see DS once every 6 months for a week or so.
The bottom line they don't know him.

OP posts:
IndigoBell · 13/08/2010 09:26

5inthebed - I hate the whole "but they look normal" line

I get this the whole time from my parents. Because DS looks normal they think I shouldn't worry about him. However every time they see a child who looks disabled they go on and on about it. It seems all they care about is appearances :( Explains a lot about their lifestyle.

bubble2bubble · 13/08/2010 10:54

Trying the other day to explain to MIL about DD's problems with self regulation which have been really bad since the holidays. Sad

She helpfully said that maybe more mixing with other children would "knock it out of her" - wouldn't that be great?- so much cheaper than OT

Sympathies genie

sc13 · 13/08/2010 13:13

I hate to have to say this, but that is precisely the reason why I've told everybody about DS's dx of ASD here in the UK, but, back in the small town in Italy where I'm originally from, I've only told my parents and my best friend.
Both my mother and my friend talked me out of telling more people, by picturing exactly the sort of things you've had to experience (down to the institutionalizing).
My impression is that in Italy, especially in small towns, there is a notion of so-called 'classical' autism, but not so much yet of autism as a spectrum.
On the other hand (this from a discussion with a friend here in the UK whose son also has ASD and feels strongly about 'full disclosure'), how are people going to learn? She does have a point, but do I really want to put myself and, more importantly, DS through the inevitable commentary and the unwanted advice, so that people can learn?

amberlight · 13/08/2010 14:15

It's not always much better when we grow up, either. "Oh you can talk - you can't be on the autism spectrum" "You look normal, you must be lying about having any difficulties" "You got social communication wrong or panicked? Must be deliberate manipulation by you or attention-seeking by you - why should we care". Endless.

Not that this is any consolation right now, Blush but public knowledge is gradually increasing and people are campaigning more and getting more info out there. One day more people will have a small amount of respect for the levels of difficulty we have and be prepared to help if asked/consider things instead of find a criticism to suit every single thing we do or don't do.

Original poster
genieinabottle · 13/08/2010 14:32

Thanks everyone for your supporting replies.

sc13, i have decided that from now on i will not speak about DS's difficulties to neither family or friends, and next time we go over there i will do my act of selective hearing with the comments and especially will not attempt to reply and explain.
They can stay in their ignorance and believe what they like, it's just too painful to be in the middle of it and i guess at the receiving end of it in adulthood like Amberlight has rightly highlighted.

From now on, professionals and teachers are the only ones with whom the asd will be discussed, and for support it will be people who get it like here on the SN board. Smile

OP posts:
AgnesDiPesto · 13/08/2010 16:09

My mum has just spent a week at our house and rarely interacted with DS being terribly busy whenever I could have done with someone looking after him. Just out her depth. On the plus side the lawn has been mowed and the ironing done which were clearly preferable to 1:1 with DS.

StarlightMcKenzie · 14/08/2010 17:33

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cloelia · 14/08/2010 21:16

Hello G . we have just spent a week in Brittany with our dd who is in a wheelchair, has a tracheostomy and a ventilator, looks a bit odd but perfectly normal really. I have never come across so many staring people as we have done last week. Kids would walk around her staring and pointing. At one point I went into a supermarket leaving her outside, and came out to find a grandpa character walking round my dd explaining things to his gd (about 5) in a manner which greatly upset my dd. What is it about disability and France?? Having said that, I have also never seen so many available disabled car spaces, which was fantastic ...

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