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Has autism touched your life?

Some other time, some other place, and things would be different, maybe.
You might even know my name. You might even love me.
But if you'd let me share your world, I promise I could make things right.
So won't you let me share your world?
Won't you let me in? 

I wrote those lyrics in 1998. Back then, my 3-yr-old twin daughters lived in their own separate little worlds. Nobody else was allowed in.

Before I had children I didn't know much about autism. I'd seen Dustin Hoffman in Rain Man, but that was about the extent of my 'knowledge' on the subject. Of course, that all changed when the girls were diagnosed in '97. Senior Management and I soon discovered the diagnosis covers a wide range of symptoms. Mr. Hoffman's portrayal was by no means a blueprint of what we could expect.

Over the years we've come across a lot of people whose lives were touched by autism in some way. Some have children who managed to graduate from college despite being considered autistic. Others are still coming to terms with a recent diagnosis, resetting their hopes and expectations while grieving for the life and future their child will never have.   

Our girls are sixteen now. Sad to say, there'll be no college education for them. No marriage or children. Years ago we accepted (and started to prepare for) the fact that they'll never lead anything like a 'normal' life. In fact, it's the main reason we moved to America.
Even so, my daughters have changed since I wrote that song. They still don't really know my name, but they know I'm 'Daddy' and while we don't have full citizenship in their worlds, they long-since granted myself, my son and Senior Management a sort of occasional Green Card status. 

In the between times when when they're not pretending we don't exist or driving us to distraction, they laugh a lot, and we get lots of hugs. I know my girls are happy and when all's said and done, isn't that what we want most for our children?

How about you?

Has autism touched your life?


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( 69 comments — Leave a comment )
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Apr. 27th, 2011 02:06 pm (UTC)
Well, yeah, I suppose there's no such thing as a normal life in America...

Robin Williams talked about the two dreams parents have;
one ends with,
"I'd like to thank the members of the Nobel Prize Committee..."
and the other with,
"Would you like fries with that?"

Not that I'm complaining, mind you,
with dreams at once much smaller yet somehow more profound,
lost between the Nobel Prize and fries.
Apr. 27th, 2011 02:10 pm (UTC)
I'd be delighted if my girls developed enough to be able to work in a fast food store.
(no subject) - msstacy13 - Apr. 27th, 2011 02:24 pm (UTC) - Expand
(no subject) - snapes_angel - Apr. 27th, 2011 02:10 pm (UTC) - Expand
(no subject) - jongibbs - Apr. 27th, 2011 02:11 pm (UTC) - Expand
(no subject) - snapes_angel - Apr. 27th, 2011 03:22 pm (UTC) - Expand
Apr. 27th, 2011 02:08 pm (UTC)
Has autism not touched everyone's lives, in one or another form? I knew two deaf boys once, sat side-by-side on the bus. One was autistic, would rock back and forth in his seat at times, oblivious to the world around him, the other was vibrant, babbling on about things, curious about the world. No, I understood not a word of what he said, he was still well entrenched in the being educated part of the system, but you knew he would, eventually. There was quite a noticeable difference between the two.

Autism itself runs the gamut. There is mild, and not-so-mild. I'm not saying I understand a lot about it, and if I did, that would be an outright lie: but yes, what we want is for our children to be happy.
Apr. 27th, 2011 02:10 pm (UTC)
what we want is for our children to be happy.
Amen to that :)
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Apr. 27th, 2011 02:57 pm (UTC)
Statistics say that 1 in 150 births will bring forth an autistic child...mostly boys

We were told that the odds of having non-identical twin girls who were both autistic was so unlikely, we should have done the lottery :)
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(no subject) - jongibbs - Apr. 27th, 2011 05:19 pm (UTC) - Expand
(no subject) - amysisson - Apr. 27th, 2011 03:31 pm (UTC) - Expand
(no subject) - jongibbs - Apr. 27th, 2011 06:34 pm (UTC) - Expand
Apr. 27th, 2011 02:50 pm (UTC)
Your post touched me, for one thing. You seem like a loving father. Your cheerfulness and good temper are a blessing.

My only experiences with people with autism are occasional conversations. Once, on a snowy hill, on a cold day, it was my kids and this other family and their kids and one of the boys was autistic (the mother told me afterward). I talked with him--it was like wandering in a foreign country; I felt honored that he did decide to talk to me.

A neighbor girl has some sort of mental challenge that may be autism, or may be something else. I've known her from small childhood. She talks without any affect, but some things make her very happy and some things upset her terribly. Her mind seems to get stuck on some things, and she'll go round about them in talking, round and round. She seems to like me, and I like her a whole lot. She always asks after my youngest son, who's a few years younger than she is, and who played with her a few times when they were both very little.

Apr. 27th, 2011 03:00 pm (UTC)
I've met hundreds of children who are somewhere on the autistic spectrum, and I can honestly say I've never seen two that act exactly the same way - in that respect, I'd say they're just like regular folks :)
Apr. 27th, 2011 02:56 pm (UTC)
I've known several close friends dealing with autism in their children, and I think nowadays all parents go through a fear of hearing that diagnosis, since it is so prevalent, when it wasn't so years ago. When I get comfortable enough with them, I always ask what they believe caused their child's autism, because I've never seen a condition, other than cancer, that is so widespread and yet so mysterious as to the cause. As you probably know, I've received a thousand different answers. NJ is the best place to live if you have an autistic child because 1 in 70 children there is diagnosed with it, and therefore they have more resources. However, being from New Jersey and having children recently, I know that all new parents here are hypervigilant of the signs and symptoms and constantly live in watch and fear of it. But until we know the cause, there really is nothing we can do, other than what you're doing, and what all good parents do... giving the best we can to our children, to help them be the happiest and best people they can be.
Apr. 27th, 2011 03:03 pm (UTC)
We made a conscious effort not to think about the cause (since it's not going to change anything), but I know some folks drive themselves to distraction trying to figure out if it was because of something they did or didn't do, or something that happened etc.
Apr. 27th, 2011 03:13 pm (UTC)
I know people all over the autism spectrum. I think there is as much diversity on the spectrum as there is in the neurotypical population.

The protagonist in my book has Asperger's syndrome (though the A word is never used). When people react to it, they almost invariably mention that they have a son/neighbor/student/cousin/friend on the spectrum.

I'm glad that more people are talking about autism these days. Thanks for your post.
Apr. 27th, 2011 03:34 pm (UTC)
I don't often post about it, but I figured, what with April being AA month and all... :)
Apr. 27th, 2011 03:16 pm (UTC)
Wow, Jon - thanks for sharing this. It can't be easy for you all. We have friends with children in different places on the spectrum. One couple became obsessed with the "why" and spent years researching and warning us all agains vaccines, and food colors, and whatever the cause-du-jour was. It seems like autism is so much more prevalent these days, which is a mixed blessing, I suppose. While there seem to be more kids out there with the disorder, there is also more awareness and, one would hope, more support. In the long run, all any of us can hope for for our children is that they are happy, so it seems like you're on the right track. : )
Apr. 27th, 2011 05:13 pm (UTC)
One couple became obsessed with the "why"...

I can quite imagine how easy it would be to do that.
Apr. 27th, 2011 03:29 pm (UTC)
Autism has not touched my life directly as of yet, but it is something that is often on my mind, in part because I feel I know countless friends or friends-of-friends or distant relatives whom it has touched directly.

I find your posts about your daughters to be very moving and inspirational.

If I may ask, what is your girls' relationship with each other like? Is their private world shared between them, or do they each have individual private worlds? I hope that's not a stupid question.
Apr. 27th, 2011 03:35 pm (UTC)
Hi Amy, they interact with each other a little, but in the same way they interact with us. They each have their own seperate world, if that makes sense.
Apr. 27th, 2011 03:34 pm (UTC)
i'm autistic. i was diagnosed in '74 or so? fortunately my family of german speakers had access to asperger's writings (not yet translated into english) so they didn't presume i would be kanner-esque, which was kind of an issue in way back then.

i don't consider it a disability at my level; it's more like a part of a personality. i have friends with recently-diagnosed kids who i have set myself as an example for -- they're my friends, they can deal with me, thus they can deal with their kids. it's harder for them of course bc of the emotional investment, but i truly think it pays off.

i am so glad your girls are happy, and that you appreciate that in them!
Apr. 27th, 2011 05:14 pm (UTC)
I hope he's not reading this comment, but I'm 99% certain an excellent guitarist I know is on the spectrum somewhere.
(no subject) - lyonesse - Apr. 27th, 2011 06:29 pm (UTC) - Expand
(no subject) - jongibbs - Apr. 27th, 2011 06:32 pm (UTC) - Expand
(no subject) - lyonesse - Apr. 27th, 2011 06:38 pm (UTC) - Expand
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(no subject) - lyonesse - Apr. 27th, 2011 07:25 pm (UTC) - Expand
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Apr. 27th, 2011 03:47 pm (UTC)
My neice/god daughter has both autism and down's syndrome. She will soon be ten. I don't know if she'll ever speak a word, but sometimes, she'll stop and take my hand, and that's about the best feeling. On Easter she came up to me and took my hand, and instead of the expected walk to the TV like she usually does, she just rocked back and forth like she was dancing. So I took her hands and danced with her for a bit. I've no way to know if she enjoyed it, her expression isn't something I can read, but I hope she did.

On the other hand, my brother discovered she likes lasagna during dinner, and even had seconds. They were very happy to have a new food to add to her generally finicky diet.
Apr. 27th, 2011 05:17 pm (UTC)
Both my girls love music. One sings like an angel, the other like Johnny Rotten and it's an absolute pleasure to listen to either of them :)
Apr. 27th, 2011 04:00 pm (UTC)
My six-year-old son is diagnosed as high-functioning autistic. When he was two and three, I admit, it felt hopeless at times. He didn't speak sentences. Potty training was a two year process from hell. The tantrums...!

However, he has made amazing progress since then. I know at his school he has broken all sorts of stereotypes about autism because he's so HAPPY all of the time. I'm glad that your girls bring that sort of infectious happiness into your lives, too!

Apr. 27th, 2011 05:18 pm (UTC)
Ah, potty training. Now that brings back some interesting memories :)
Apr. 27th, 2011 05:22 pm (UTC)
Than you for sharing this.

Having children is putting faith in what ever future you get with them. It is a lottery and it changes your world, how ever it works out. It seems you've made the best possible world for them, and that is the world.

"I know my girls are happy and when all's said and done, isn't that what we want most for our children?"

Exactly this.
Apr. 27th, 2011 05:30 pm (UTC)
Thanks, Ann :)
Apr. 27th, 2011 05:30 pm (UTC)
Thanks for this beautiful glimpse into your reality. I don't live with autism, but it touches my life by way of my nephew, who will also never lead an independent life.
Apr. 27th, 2011 05:55 pm (UTC)
'independent life'

That's what I should have said, not 'normal life' :)
Apr. 27th, 2011 06:37 pm (UTC)
My brother's kid has Aspberger's, OCD, and Tourettes. He is brilliant about some things (fountains) and can barely do other basic functions. My sister's two kids are much worse. My sister was also told there was little chance her second kid would have autism, but I think they've rethought that. One say very little (like a few sentences a year) one has echolalia. Both are not potty trained (and they are 13 and 9). Both have severe seizures that can't be controlled by meds.

I am so glad I had my daughter first because I would have been too scared to. And I feel guilty that my life is easy.
Apr. 27th, 2011 07:01 pm (UTC)
Lol, I doubt very much your life is easy, just different :)
Apr. 27th, 2011 07:08 pm (UTC)
This is a wonderful post. It touched me. Autism has touched our lives but very lightly. Our oldest daughter was diagnosed when she was five with a non-verbal learning disorder. It is similar to Asperger's -
Apr. 27th, 2011 09:33 pm (UTC)
Thanks, Mary :)
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