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So today I had my first "but he looks so normal" conversations....

58 replies

5inthebed · 18/03/2009 18:25

And I didn't no whether to laugh or cry!

DS2 goes to MS school for two afternoons a week. Has done so since January. Never spoke to any of the parents as don't see the same ones regularly. Today while we were waiting to go in, this was the conversation I had with one of the mothers (seemed pleasant enough)

Her "Is your ds new? I've never seen him before."
Me "He's been coming since January, but only two days a week"
Her" Why is that?"
Me "He goes to a different school in the mornings" (At this point was getting a put flumoxed as knew what was about to come)
Her "Oh what school is that then"
Me "It's XXXXX school"
Her "Never heard of it, where is it?"
Me "Its in Blardy Blar, its a new school"
Her "Is that the school that is for Autistic kids, the one opened by that famous footballer? Oh god, does he have Autism?"
Me "Yes he does "
Her "Oh what a shame....but he looks so normal"

Well I could have said "Well what would you expect? Half a head or maybe green skin?"

What I did say was "Yes, autistic kids do look like normal children, because they are"

Thought I handled it quite well, but I expect he will be avoiding me at all costs from now on and probably telling all the other mums.

OP posts:
5inthebed · 19/03/2009 11:12

I have nothing against the mother who made that comment about my ds2, it was simply the first time someone had said that to me. They may as well have said "Oh well, he's got ginger hair as well so maybe thats a good thing". I wasn't offended.

And as for the prayers, Amber said it very well. I am not a religious person, but I see no harm in others praying for people with cureable illnesses. Amber has Aspergers, which isn't going to go because of the power of prayer.

Sorry if I offended anybody, it wasn't my intention of this thread.

OP posts:
2shoes · 19/03/2009 11:15

had to laugh at the meantion of prayers.
when dd was born she was pput in my dads church prayers, fine as she was poorly.
when I found out later that she was still in them I told dad to have her removed.
well dad died and db went to the church, and yes she was still in the sodding prayes, would loe to know how they would cure cp

MannyMoeAndJack · 19/03/2009 12:08

5, no, I wasn't suggesting that your encounter had made you feel offended. I was just stating the case that in general, no offence is intended when these comments are made.

wrt the praying, this is an example (in my atheist mind) of how people can feel as though they are contributing to a cause/or to somebody, without actually having to get involved directly.

pagwatch · 19/03/2009 12:20

I don't believe the people that say clumsy things are bad and I am not rude to them. I know they are most well intentioned and I welcome speaking to almost anyone who wishes to speak with me.

I do occasionally wish to have a quiet and unaggressive vent about it on this board.
I don't think that is unreasonable. It is the SN board isn't it?

misscutandstick · 19/03/2009 12:22

Back to the original thought,

I too had that same conversation with a waiting room FULL of older generation chaps.

They noticed me signing and one said "does he not hear anything?" i answered that his hearing was fine, but rather that the words i were saying made little sense to him, and that signing helped him to understand. By now there was a room full of puzzled and pitying faces. I explained that he was autistic and the pity changed to shock, and a general agreement of "oooh you wouldnt think it would you?" was echoing around the room.

Now considering the aaverage age in that room must have been in the region of about 102yrs (it was an optical clinic), they were full of well thought and interested questions. They were all very taken with him.

The feeling was that it was strange that this cute small child sharing his fave blanket and giggling (he was also swimming on the floor, licking the chairs, and finding as many coat labels as he could) could possibly have autism...

ChopsTheDuck · 19/03/2009 12:49

I've never ahd that comment yet, and it worries me!
I think ds1 does look normal, he is normal to me! But whenever I've had to explain that he does have sn nobody has ever been surprised at all. I guess his issues must be more obvious than I think they are.

2shoes · 19/03/2009 12:55

pagwatch imo of corse you can have a moan on here, you are amongst friends. seems to be a bit of a trend at the moment on the sn board to tell people what they can say.

MannyMoeAndJack · 19/03/2009 13:01

or what they can't say

amber32002 · 19/03/2009 13:42

Gee, I shouldn't be complaining considering ASDs lead me to say inadvertently rude things to people all the time !!

TotalChaos · 19/03/2009 13:45

agree with Pagwatch. However well-intentioned a comment is, it can still be very hurtful to a parent/carer

Phoenix4725 · 19/03/2009 13:57

I had that and the oh shame and its your last one to l.ike would matter which of my dc was affected

4nomore · 19/03/2009 14:47

The line I seem to hear a lot when I say that my son has an ASD is: "Oh but they're very intelligent." Now of course we know that some is and some isn't so much, I think my boy's fairly bright but I don't think he really puts it across well as he flings himself about and chunters on about Storymakers to himself. It is just people trying to say something that they hope is appropriate I guess.

janine

bunnyrabbit · 19/03/2009 14:56

I have very mixed feelings on a lot of this. Having only recently found out the DS1 has a social communication disorder my opinions will annoy/shock/offend people on here. This is not my intention but as someone said, MN is a good place to discuss this stuff.

DS1 does appear to be completely normal. In fact, he is, except for the small matter of having to be in control all the time, and a few other minor oddities.

Until recently we used to joke that DS1 was completely mad and more than a little eccentric all of which was completely understandable considering who his parents are.

Would I say the same thing now, knowing that he has ASD? Yes I would. He is eccentric!! Just because he's been diagnosed does that mean I can no longer joke about the way he has comletely silly moments and makes up his own words to songs and spends ages rhyming everything? The fact he smells his food and has his little routines - are these any less endearing/amusing? Should I get all serious and mournful that he's differnt. Am I being incredibly disrespectful?

Would I wish the ASD away and have the cure if it was possible? I honestly don't know. I understand others views on this but to me it's a bit like the whole 'god has blessed us' gig. He hasn't and I can't beleive that any parent honestly wants their child to have Special Needs, but I don't know how my son would be with out it.

Do I want to stamp out his individuality? No. Do I want to make life easier for my son in the future? For him to make friends, to love, to marry, to have kids of his own? Hell yes... verdict still open I think.

I also have problems knowing what to say to others concerning their DCs and not sounding false. I usually revert to 'how does that affect you/your dc' and 'well you seem to be doing just as well as the rest of us' very worried as to how patronising this sounds.

Sorry that was a long post!!

BR

bunnyrabbit · 19/03/2009 14:59

omg so sorry for that boit of a disjointed rant! Obviously needed to get that of my chest...

amber32002 · 19/03/2009 15:07

Hi BR, I don't think that God has blessed me with having an ASD, no. But it isn't a curse either. It's just different.

Now if you asked me about the arthritis, I'd say yes I'd love it to go.

sc13 · 19/03/2009 15:23

Bunnyrabbit: I think finding the humour in situations is a really rare gift, and one that can probably contribute no end to building our DC's self-esteem.
About wishing that things were different, I don't know. Like all mothers here, I wish anything that brings DS pain and discomfort would just go away. But other things, I'm not so sure. Take DS's hyperactivity - I've actually always liked that about him. I think, wow, he has so much energy, he's so alive. When other people have remarked on it ('can't he sit still for 5 minutes?'), I've always taken it as a compliment. When MIL didn't invite us to her birthday party at a posh restaurant because "we all know DS can't sit still", I secretly thanked him for sparing me the ordeal. But ask me again when he has to go to school...

bunnyrabbit · 19/03/2009 15:25

Hi Amber.
It's certainly that! And life is never dull I'll say that for it. It's certainly not a black and white thing. Although my DS1 has no LDs and only some hypermobility/reduced core strength, so I think that changes things.

What about your DCs?

I suppose the question is, if your DC has an ASD with LDs, delayed speech....not physical disabilities, would you take it away if you could? Only I don't want to hijack 5's thread so will leave this there and ruminate for awhile!!

BR

bunnyrabbit · 19/03/2009 15:32

SC13 posts crossed..how old is your DS?

Like a dynamo... wind 'em up and watch 'em go. Although DS says it's his super powers I did say he was eccentric!

LOL at MIL's do. Hope you feigned a suitable amount of disappointment.

BR

sc13 · 19/03/2009 15:38

BR: DS's almost 3. I am sure our DC have super-powers, only (sadly) they don't much overlap with the feeding the teddy/drawing a circle/touching one's nose that is required of them.

amber32002 · 19/03/2009 15:49

Hmm, what about my DC, for example? He has fairly difficult dyslexia and is somewhere on the spectrum. Again, totally mixed 'blessing'. He can memorise pages of text, beat a computer at spoken word exercises, come up with extraordinary and hilarious new jokes instantly, but he can't write stuff down without an absolute struggle and can't find things - not even look something up in a dictionary.
Would I take the dyslexia away? Nope. But I'd let him use technology in exams, which would help. And schools mostly don't. Or you have to fight for it.

If he had a profound LD? Not sure. y'see, I still believe that each of us has a beauty before God. I've never looked at anyone and thought 'oh what a shame they're not fast enough/pretty enough/intelligent enough'. I want to know them, as people, for who they are, for what they can bring. I'd want to help make his life easy and his choices wide, though.

If he was in great pain, yes, I'd want it to stop.

bunnyrabbit · 19/03/2009 16:00

SC13... the first Pead we saw referred DS1 for a motor skills assesment. Nothing else. because his drawing is immature. Don't think he'd have been interested in a recital of War of the Worlds or any other musical that DS seens to have memorised!! Teddy be damned!!

Amber. Eloquently put. I suppose the question is, what do we want for our child/ren? If they have LDs, physical disabilities/impairements does it matter? Do they have to achieve great feats, be 'normal', achieve the same as everyone else? Or does it only matter that they can make friends and be happy? Or maybe I put too much stress on the friends thing? May be it's just be happy.

Discuss

BR

sc13 · 19/03/2009 16:05

Amber: just on the dyslexia point, I'm amazed that schools don't allow the use of technology, or indeed that they insist on handwriting (as I see from other threads), which is obsolete anyway. We discussed dyslexia yesterday at my uni, and even cash-strapped places like mine now offer all kinds of technological support for dyslexic university students taking exams.
A small battle perhaps, but one worth fighting, would be to extend this to primary and secondary education? The technology does exist in some cases to make lives easier (an electronic search is easier than looking things up in a dictionary, I guess?), why the f* should one not use it, instead of clinging to some old-fashioned notion of 'necessary skills'?
Sorry, a bit there

amber32002 · 19/03/2009 16:23

Ah, the friends thing. Some musings...

Often, not always, the ASD 'friends thing' is misunderstood greatly by NT folk. Because NTs are capable of having tons of friends (well, not tons by weight, but you know what I mean), and socialising with them in noisy echoey smelly crowded places with lots of eye contact and touching and smiles and shared pretend play, that becomes the target for us too.
'
If we play 'our way' - next to a child, in quiet, not looking at them - then that's seen as us ignoring the child or having no social skills. Not to us it isn't. We have our own sort of social skills. For example we can see well out of peripheral vision, so we don't need to stare directly at a child. And if we do, it's painful and distracting.

And for us, the shared task is how we play, how we learn, how we develop our interests. The repetition isn't us being obsessive for no reason, it's us testing and retesting systems to the finest detail, something other children find boring but we find essential in order to understand that tiny part of life before we feel secure enough to move on to the next testable bit of life.

Some (not all) parents or teachers really do think that we have to learn to do social skills only the NT way or it won't count. If they tried getting the children to play with us in ways that we could cope with from time to time, and understand us, it'd work ten times as fast as us having to do the hard work every single time and getting totally worn down by it.

But although people are happy to use sign for children who are deaf, and guide a child who's blind, a child with an ASD is often (not always)expected to have to learn to pretend and act as if they have no disability at all in order to achieve 'success' in the eyes of the parent and teacher. "Hooray, he or she no longer looks at all autistic!"

I wonder if they'd applaud a blind child who could pretend she could see things, or a deaf child who could pretend they can hear? Society 'applauds' me if I can pretend I can see and hear things I can't, and socialise in ways I find painful and exhausting, that's for sure.

All very odd.

The friendship and social skills 'thing' really is very, very powerful and people don't always think about it and us in any logical way as yet.

Make friends? Yes. Absolutely. A friend at a time, probably somewhere quiet, a friend who shares our interests and helps us develop in ways that respect who we are. There are ones like that out there in all sorts of specialist hobby or special-interest-clubs.

From my point of view, it was a totally bizarre experience for me as a child to have be engaged in discovering the finer points of some amazing set of facts about physics, maths, music, mechanics...and some child wanted me to go walk aimlessly round the block with them to talk about some pop star, which was seen by adults and the other children as Far More Important and a Sign That You Can Have a Friendship. Well, if the children had been interesting, I'd have been interested in engaging with them more. That may seem rude, but it's often true of us. Often (not always) our brains work at speeds and in detail that other children cannot keep up with, & have no interest in, and which concentrate on the tiny details and differences that they can't even see. But they mistake that for us being obsessed with something pointless. Oh well.

amber32002 · 19/03/2009 16:27

SC13, we had to move to a private school to get a school that allowed DS to use a laptop, but he can only use it for some of his exams because a lot of them are question and answer papers or research tasks where he really does presently have to use pen and paper and a set of books. That's as far as the examiners will go. If he was totally unable to write, he could have a scribe, but he can write - just slowly, with misspellings and no punctuation.

Compare and contrast him writing half a page of badly spelled badly set out drivel if he has to write it himself, and the five pages of grade A material he can produce if allowed to use a dictaphone or dictate directly to someone who can type at his thinking speed (bloomin fast). Difference between a grade E and a grade A. And all over the country these children are leaving school having been chucked out, laughed at, dispirited and given no chance at all of passing their exams. 40% of entrepreneurs are dyslexic. They leave school, throw away the pen, and use their brains and voices to succeed in ways the school never allowed and wouldn't permit. Arrghh.

lingle · 19/03/2009 17:41

Going back to the original post, I suspect that other mothers usually retreat from these encounters cringing and avoid the SN mum out of fear of making more mistakes.