A point of view

[AlysWho]

I came across this article. A first hand view of one guys life with autism.
Of course I dont agree with all of this, that is to say its not my experience, but I always am interested to hear different points of view and experiences from people who have EXPERIENCE with autism/disabilities.
Knowledge is good .
However I've no time at all for the 'one size fits all' camp, or people who have NO or very little experience and think they have THE answer.
Thats it!x

Fascinating and very deep.

Thanx for sharing that it is good to see things from another point of view.

I found that I agreed with quite a lot and at least could understand most of the rest.

Thanks Alys.

no. no. no. my child is not an alien. he wasn't dropped off to this earth by someone else. he's mine. i love him. he is human, he looks like me.

he may not understand what i want him to, but i understand who he is. there is a place for him here, on this earth. we accept him, he will have a future.

he may not be everything i've always wanted, but i have changed what i want, and i know i want him.

and i want him, as he is. as he will be and as he wants to be.

it made me tearful in a couple of places and like EllenJane said i agreed with most of it, i think he was just using alien in a metaphoric sense eandz i think (presuming from whats writen he is autistic himself) that its kind of how he sees autism and himself like a foreigner in a strange land amongst different beings. ive never felt my DS wasnt what i expected or hoped for BUT as most parents you hope they will grow mature go to school college/uni work and have their own family and dreams one day, i still have those hopes they are not all going to probably come true i know that but they may not have done even if my DS was NT because lifes a rollercoaster oooh i could use that Cliché "life is like a box of cocolates, you never know which one yer gonna get" but its true my DS is my DS i adore him , I think i grieved for a few weeks but after reading that i know its not how im feeling anymore and since DS went to his new SS he has come home talking about for the first time in his life ever his friend at school omg i was hoping dreaming this day would come hes been for the first time ever coming out of school happy ITS A MIRACLE

Definitely interesting - and understandable. I think he made the same mistake that many make with autism - generalisations. I have had a stillborn child, and a DS dx dyspraxia ? aspergers. It is not the same as far as grieving goes. Anything that is finite is quite different from something in perpetuity.
I also agree with you eandz. My DS is not an alien or a foreigner in a strange land and is loved for who he is. I don't wish him to be someone else. Perhaps i wish that life was easier for him, but, like madabouttheboy said, i wish that for my NT DSs too.
A big for you madaboutheboy. gives you warm and fuzzy feeling when you hear that today has been a good one for your DS.

'Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them'

I need to stop right there. Learning that my child had autism was upsetting, but the trauma only started when I had to engage with the Local Authority.

i agree as i lost a baby very late in pregnancy and yes i grieved but wasnt the same and also i lost my mother a while back and that was totally different too , i am proud of my DS as im proud of all 3 of my DC's loving them all as much but also differently as they are all individuals and all have personality qwerks thats what makes us human not alien all three have special qualities. thank you auntevil it has been weird a week of good days whatever next never ever have i though i wish my DS wasnt autistic, ive thought why does everything have to be made so difficult by the authorities and medical teams ect and why cant people be more tolerant most people need to walk a mile in our shoes ( but with my luck they would run off with them lol)

I had to stop reading at the "if you want to change us, you're wishing your child away" bit.

dd1 is loved. completely and utterly.

she is accepted, fully.

I will fight forevermore to get her the best I possibly can.

but I would take her autism away in a heartbeat.

I would change her form the (at times) scared and confused girl she is - form the girl who cannot work out how to relate to the world she so desperately wants ot live in.

I would take away her fear, and I would (and do) wish for her to understand how to just be with other children - the children she wants to play with.

I owuld take away her sadness at not being understood, and her frustration at not understanding.

judge me for it if you will but I would get rid of bloody bastard autism as fast as I possibly could, if I had the chance.

Had to LOL rednoise - so true.

Yes, but he's not saying everyone feels this way, just that some do. And that if you do what a lot you are missing out on. I read it as you need to love your child for who they are, not who you want them to be. Lots of parents are guilty of that, wanting fantastic dancers or great academics or amazing footballers.

I have come to terms with the fact that my DS is his own person and I just want him to be as happy as he can be. There's no point wanting him to have friends, because he doesn't want any. No point expecting him to say he loves me, because he doesn't understand the concept.

He's funny and zany and obsessive, has a great memory and is never happier than when playing on the computer. But he can't do that all his life so I make sure he'll be able to function in the NT world.

'I read it as you need to love your child for who they are, not who you want them to be. Lots of parents are guilty of that'

Yes, but I don't think that many SN actually have that luxury, as prognosis is very much tied to acceptance.

Parent of SN children I mean.

Agree with Silverfrog, i would take away ds autism in a second if i could. I dont want to change him, just want to have the best possible life for him. He is the most gorgeous, handsome, adorable little darling and i am so blessed to have him. I do wish he was same as his brothers for him more than me. He's 10 and doesnt communicate, go out to play, still in nappies, doesnt play with toys or anything. I love him more than life itself as i do all my ds, however i dont think im his alien mummy, he's 100% mine. And yes when i realised he had problems i did grieve but more because i wondered how and if i would be able to cope, and also who will care for my darling ds if anything happens to me? Article was fascinating and i realise is done by someone who is autistic, however i dont think everyone is the same (whether NT or autistic).

silverfrog I absolutely agree, and could have written your post virtually word for word.

Maybe it's weird and maybe I'm wrong, but now I've completely accepted my DS's autism (and it took a long time, he was DX 8 years ago) I wouldn't take away his autism, because then he wouldn't be DS anymore. It's in every atom of his being, it affects his every action and emotion. If he suddenly stopped being autistic he would change so much that I would miss my gorgeous, totally crazy boy. I wouldn't know the DC that took his place.

I expect it's because he is fairly HF and seems happy enough most of the time. If he was extremely anxious or unhappy I'm sure I'd want to change that. But I really do love him just as he is, I love the way that he is.

I know we all love our DC desperately. They are even more precious, somehow, than NT DC.

I hope you can forgive me for having a different view of things. ?

Ellenjane1 - of course you can have a different view

but please odn't think that I haven't accepted my dd, just becuase i say I would cure her in an instant.

I love her every bit as much as you love your ds, and have fought so many battles for her, and willnever give up fighting.

I think you are right - most of the time, people who are on the "accept it for what it is, don't try to cure" side of the debate are coming at it form a high-functioning perspective.

we all have our own insights into the world of autism, and how it affects us, our families, and most of all our dc with autism.

but I stand by what I said - I would take dd1's autism away if I could. her autism is pervasive too (I am often a lone voice on the "dd1 is ASD" rather than "dd1 has ASD" debates), and affects her every breath.

if I could take that away, and give her a shot at living free form being so tied up in anxiety and confusion then I owuld. undoubtedly.

And I actually agree with you. I know you love your DD as she is, that's obvious from your passion. 'One size fits all' doesn't work, does it?

DS is either very very happy, passive or in the depths of despair. There's no in between. But the highs (for him, and in my opinion) seem to outweigh the lows. That's not the same for many, I do know. That's why I wouldn't change him, take away his autism, because he'd lose as much as he'd gain.

I didn't mean that you hadn't accepted your DD's autism. Sorry, it did come across like that, didn't it? I think this board sometimes finds differing opinions seem like an argument when they are just differing opinions.

I think the reason 'accept' is such a taboo word for me is because it is usually used against parents when they are trying to help their children.

When you battle for provision you are accused of 'not accepting' your child's disability, when realisty you are 'not accepting' inadequate provision. The two seem to have merged somewhere and have fused to mean the same thing.

That is the thing, Ellen - one size most definitely doesn't fit all, whatever the subject

I didn't think you were personalising what you said, btw, but I thought it was important to put my view (and I know it can be an unpopular one) - without it, I fear that only the "acceptable" side of autism is seen - the eccentric, quirky side, which obviously comes with issues, but issues which are acceptable, workable around ( good grammar! ), and don't need ot be "fixed", more need ot be accomodated.

But that isn't where my dd was, originally. she had deeply unacceptable habits, and was very unhappy and frustrated at not being able to play with other children - she did want friends, but was too scared and insecure (and aware of her differences, i think) to even try to approach them, and even if she did manage to overcome that insecurity, then she didn't have the words due to severe language delay, or she was seen as weird and unacceptable (by her peers, at 4 years old! )

and all of that needed working on - she needed to have the help and support to even get to that level of funcitoning becuase otherwise she owuld have had no life at all - not just by my standards, or any other outsiders' perspective, but just nothing - she was unable to play at all, uninterested in anyhting, and literally just sat rocking in a corner unitl we started "fixing" her.

and now she has come so very, very far, but she still has issues - the fears, and insecurities I mentioned earlier.

don't get me wrong, she is a sunny, cheeky little girl who is absolutely adorable, but there is still so very much she needs to learn/address before she can even hope to be semi-independent.

I hope that this board isn't going ot be a place where differing opinions are seen as argument - it never was in the past, and hopefully won't be again in the future. we all just want what is best for our children

oh, and as usual, Rednoise has said it all so much more succinctly

We've all been so upset by people in RL's unthinking comments in the past that it's hard to find words to describe how you feel without it upsetting someone. I think that's why we get so hurt sometimes, we are always on the edge. I don't get tipped over so often these days, but it doesn't take much!

It's good to see others' points of view but it can be hard reading sometimes.

Cross posted silverfrog!

its nice to see we can sometimes all agree to slightly disagree because we wouldnt be here disgussing out lovely DC's if we were not good mums who are passionate about getting our DC's what the need and deserve and we all have something very important in common children with SN and a desire to make their lives happy and fullfilling, its very hard sometimes to put your thoughts into words on here in type and things can be misconstrude no ones right or wrong were all different just as our DC's are different goodness ive gone tearful and all soppy