he looks normal to me!

[JsMum]

Does anyone get this comment and how does it make you feel?

 

I have had a real hard time with J over the weekend and its taken nearly all weekend for J to come back down, at the park we where playing and we got chatting to a couple with toddlers and we where talking about behaviour as their toddler was causing them some problems and I shared with them that J has too then they said to me oh he looks normal to us, her comment is actually true, from a distance he does indeed look normal but does that then make it harder for others to understand the struggles that we go throw everyday.

 

JsMum

[Bat]

Yes, we get it every day, at home, at achool and out and about.

 

It makes me feel very cross to be honest and very alone; we've had it all afternoon today when we were with family, but they weren't here to see the big meltdown before bed, or know how much prep went into her being able to enjoy herself this afternoon with other family members, or the panic attacks she had before we got there. School don't see the meltdown every afternoon when she gets home, when she's screaming and shouting about the noise, how it's too busy etc, hitting, kicking and biting me because they had assembly on a different day and nobody told her.

 

We had a very difficult day yesterday, lots of meltdowns, and it's exhausting, it's also so exhausting when you feel like nobody really 'gets it', and it reinforces to me that no one really understands how she must be feeling.

 

But I suppose, she is perfectly normal to me - in an atypical asd/adhd/ocd/anxiety disordered sort of way

 

Just wish the rest of them understood!

 

HC

x

[lynda4]

Yes all his life! Still getting it now at 22, but at least at this age, people are just commenting, not being disbelieving of his diagnosis. We used to get it everywhere we went and even from professionals, it took us til he was 9 before we got the official diagnosis and no-one believed me til he was past 7. I often think it would be easier in some ways if he had an obvious learning difficulty like Downs, so people would understand and make allowances for him. It was particularly difficult when he was younger and had behavioural problems, as he just looked like a naughty child out of control. Because my way of dealing with him wasn't what people expected me to do, he was thought of as a spoiled child and me an over-indulgent mum. It was one of the highlights of my life when we finally met some professionals who knew autism and Aspergers, told me he has Aspergers and that I'd been doing everything right all along. After so many years when everyone, including professionals and family had said the opposite, it was like gold.

[chriss]

I know what you mean Lynda. The diagnosis was a very mixed blessing for me. On one hand it was devastating that he had a lifelong disability, but there was a small amount of comfort in the fact that he was the same child he always was and it wasn't down to my parenting skills. When I read that autistic children can have severe sleep problems I nearly cried because for all his life I had been sleep deprived and had been given some very bad advice about what I was doing wrong. Noone told me that sleep difficulties can be related to neurological problems - I was told it was my fault. And even though I knew this wasn't true it hammered my self-esteem.

 

 

I have had the "he looks normal to me" comment from all sides too. Even from family who would know better if they actually offered to babysit or have him over night. But to be honest I am glad he looks normal. I'm glad that when he is behaving himself we can blend in and pretend we are "normal".

[KarenT]

The other one that makes me smile is "Well, they're all like that, aren't they?"

 

Yes love, course they are.

 

Karen

x

[elun1]

The one I hate is 'Oh my child does that too' if you happen to mention any of their difficulties! To be honest I can't be bothered to explain anymore - I've gone past it!

Elun xxx

[cmuir]

Hi

 

Amazing ? but people actually don't have 'I've autistic' written across their foreheads. I often get frustrated by that type of comment and find myself thinking that if my son were in a wheelchair or had a visible disability then we'd get some kind of instant understanding or recognition that he has a disability. (I'm not for a second suggesting that wheelchair-bound people get an easy life - I merely wish to illustrate than invisible disabilities are in my opinion more difficult in that people assume a child is simply badly behaved/useless parent when they don't 'see' the disability).

 

I've frequenly had 'children do that' - they get the 'oh, does your child lie down in the middle of the road', 'wake up at 2.30am screaming for a bath', 'self harm', 'line things up', 'becomes massively upset when routine changes', etc? That soon shuts them up!!!

 

Caroline.

[pearl]

Ooh, I so identify with this post & all the others! J is 17 now & everyone accepts him as he is, but the worst time was when my mother in law was in denial when he was about 4 - its your fault, she said to me, you've babied him. I'd soon sort him, I've raised six (umm, yes & they are ALL on the spectrum, something that to this day she cannot see)

 

When we called her bluff & asked if he could stay for a bit then ..... couldnt see her for dust.

[peppa]

Hi

 

Amazing ? but people actually don't have 'I've autistic' written across their foreheads. I often get frustrated by that type of comment and find myself thinking that if my son were in a wheelchair or had a visible disability then we'd get some kind of instant understanding or recognition that he has a disability. (I'm not for a second suggesting that wheelchair-bound people get an easy life - I merely wish to illustrate than invisible disabilities are in my opinion more difficult in that people assume a child is simply badly behaved/useless parent when they don't 'see' the disability).

 

I've frequenly had 'children do that' - they get the 'oh, does your child lie down in the middle of the road', 'wake up at 2.30am screaming for a bath', 'self harm', 'line things up', 'becomes massively upset when routine changes', etc? That soon shuts them up!!!

 

Caroline.

This totally describes how i feel, think people often think they are helping you by saying 'oh my son/daughter does that, yeah right! Want to try spending a day in our life, being screamed at because the cup was pointing at the window when i put milk in it not at the microwave, then watching dd pull her hair, hit her head, throw anything in sight, Yeah all kids do that don't they??? Guess it all comes down to the fact that there just isn't enough awareness of ASDs out there.

[Diamondmask]

Does anyone get this comment and how does it make you feel?

 

I have had a real hard time with J over the weekend and its taken nearly all weekend for J to come back down, at the park we where playing and we got chatting to a couple with toddlers and we where talking about behaviour as their toddler was causing them some problems and I shared with them that J has too then they said to me oh he looks normal to us, her comment is actually true, from a distance he does indeed look normal but does that then make it harder for others to understand the struggles that we go throw everyday.

 

JsMum

 

I usually find sarcasm comes in handy at times like this, something along the lines of "Yes I know, autistic kids usually have horns sprouting out of their heads, green scaly skin and 3 eyes, funny how my kids look sooo normal and yet are still autistic isnt it?"

 

Mind you occasionally you get the odd person who is genuinely interested, so I tend to enlighten them in a more succinct way than that......

 

Sarah ;-)

Edited April 30, 2007 by Diamondmask

[lynda4]

My ds2 was in his late teens before his Dad finally agreed that "yes he has something...... but he's growing out of it" and this with a lad who's had a diagnosis from a top autism specialist, full time one to one at school since diagnosis and is still on middle rate DLA. As you all know, you don't get those for nothing! He's been EX dh for 12 years now and his problems with accepting his children have ASDs had a great deal to do with that

[Bullet]

FIL was going on about how Tom just has a speech delay. Then last week we asked him if he could take Tom to the park to play (we met in town). He agreed and DH and I took Jacob off round some shops (Jacob got to go to the park later). Whilst Tom and his granddad were at the park Tom did the following:

 

1: Got really upset because Granddad tried to turn his icecream another way to stop it dripping out of the bottom of the cone and Tom didn't understand and thought the ice cream was being taken off him.

 

2: Wanted to leap all over granddad in exactly the same way, saying exactly the same thing for a large period of time.

 

3: Grabbed hold of a strange woman's hand without even acknowledging her because he needed help on the slide.

 

Only little things, but they did help to make FIL understand a bit more.

[allsetuk]

i get this kind of comment all the time,"he looks normal, hes fine stop fussing" or everytime i try to explain to anyone, i get "oh my son/daughter does that" i dont feel beleived by anyone because they see an intelligent , gentle little boy ......except the hospital who see someone suffering from major anxiety, my own mother said "can it be fixed ......" and since wont disscus or read anything about it ....by grandparents said "is it something you have done ...we dont think you are hard enough on him ...or is it because his dad isnt around !!!! "LOL ......it hurts but you have to get over it and focus on your priority which is yourself and child ...thats how i look at it anyway. ive spent too many times worrying about why other people think like they do....

[Elly]

We get this with our children as well and my answer is to offer them the chance of caring for them for the day

Mind you I was a little perplexed when a guy said to me "what your problem then, you look fine to me?" Strange comment when I am sat in a wheelchair

Keep smilin

Elly

[KateBall]

"Oh yes but all children do that"

 

I'm afraid I've just given up. Wouldn't it be nice if someone - some professional or teacher for example - just once said "well done you for coping as you do" instead of "oh but all children do that". A bit of empathy would go a hell of a long way.

[peppa]

A friend of mine recently expressed how she can't believe dd has ASD as "she's always so well behaved when you bring her here", its so annoying that she doesn't look beyond that and see that dd has actually tranced out because she's dealing with the sensory overload, ( Were never able to spend long at friends house as its quite a busy atmosphere with four loudish kids).

Friend keeps offering to have dd for a few hours for me and say's things like "i probably wouldn't have to do nuch because my kids would entertain her", ha! if she only realised!

We went to her house on sunday as it was her sons birthday, dd spent the whole time glued to my side because they had a standing fan on and it was blowing in her face,(dd doesn't cope well with wind). My freind said, "look how well she's behaving, she's stayed quiet by your side the whole time". The thing is what she failed to realise was that dd was actually only just to say coping with the sensation and if i'd have stayed a moment longer we would probably have had a major meltdown on our hands.

Its so frustrating i've tried explaining to my friend but it seems to fall on deaf ears sometimes, its lovely that she's offered to have dd to give me a break ( only one who has) but i couldn't even consider it without my friend being aware of how dd functions.

[hev]

i always get the feeling people think we are lying and we are just trying to excuse our kids behaviour by saying they are autistic. my sis says hes just like her boy,hes nothing like her boy!!!!!

[Ohforaquietlife]

'He looks normal to me' - well we all know how deceptive appearances can be. Just look at Baddad - he LOOKS normal

[Ohforaquietlife]

Sorry, finger twitched and I clicked twice!!!

Edited May 9, 2007 by Ohforaquietlife