I have stayed away quite purposefully from this thread, partly because I have been at this now for 18 years.......yeah, Tris is going to be 18, hard as that is to believe. I really don't want to play here, but Wesley is absolutely right and if I can back him up here, I will.

"My goal is to make sure he can survive and be self sufficient after we are gone."

This is the job......This will not change. I have seen some good info on this thread along with some of the deepest horseshit and misinformation imagineable. The idea that autism can include so very many and exceedingly different symptoms is foreign to most people. autism affects each one in a different way depending on other significant factors. It is many things, but it is no gift any more than it is always a sociopathic disability.

I have 2 kids. One is a borderline sociopath controlled by meds and the other developmentally delayed (that's a real dumbass phrase btw, is he going to catch up?)......the one has nothing diagnosable by the autistic spectrum, the other has many but he's nowhere close to sociopathic.

That's a stupid simplification and I should erase it. Yet I think I'll let it stand.   What I'm driving at is that there is no single bright line to explain autism. If I had to think of something that is somehow in common across the board, its fear. I'll let Wesley and others tell about their own children, but let me tell you about Tris.

It took some time for us to identify the reason as fear because Tris is a happy kid. Yeah....He is! AND....He relates well with others and is extremely well liked. It is no exaggeraration to say everyone loves Tristan. But the fear of not knowing EXACTLY how and when things will happen..........yeah........Karen and I refer to it as "Rain Man Syndrome.".....but it really is no joke. Tris has significant delays/retardation and also a major wpeech problem but what gets to him is not knowing his "schedule."

When are we gong to Aunt Connie's Daddy?
Saturday
When Saturday?
Oh, I guess we'll leave about 10.
Are we going to stop at McDonalds?
I dunno'.....we'll see.
When?
Well, Saturday.....
Are we coming home Saturday.
Yeah, unless something else comes up
We stay at Aunt Connie's?
No, we'll come home probably.
Saturday?
Yeah
Daddy?
Yeah?
Are we going to Aunt Connie's Saturday?
Yeah
What time?
Like I said....about 10
On Saturday?
Yeah
Are we coming home
Yeah
Saturday?
Yeah
Daddy?
Yeah
Are we going to McDonalds on Saturday?
OKAY....OKAY.....Tris....listen
Okay
We're going to Aunt Connie's at 10 o'clock on Saturday and we'll stop at McDonalds. We'll come home that night.
Saturday night?
Yeah
We go to Aunt Connie's Saturday?
Yes Tris....We go to Aunt Connie's at 10 on Saturday and we'll stop at McDonalds and come home that night. Got it?
Okay Daddy

This conversation will be repeated at least 4-5 times a day every day til we go.

Seems silly but what that really is is fear. He takes great comfort and has the need for routines and schedules. In some ways that thing has worled well for Tris because we identified it and built it in to many of his everyday hours and his school time as well. But if you want to see a serious panic scene.....vary the routine. The only gift part of this is in the way a lot of people have worked hard to make it useable to Tris instead of a liability, but liability it certainly is.

And that's just one small part.......and the least serious part of Tristan's problems.....and problems they are. There are also serious pitfalls for him with even that seemingly innocuous problem. Others are larger by far and potentially more damaging in the long haul.

Using language to give things a better face just pisses me off.   Developmentally Delayed my fuckin' ass.....................I'm also sick to death of assorted experts telling us what these kids like Tris and Weley's son are thinking and why. MAJOR BULLSHIT!!!!!

I'm not Black but if I want some idea of the African American experince and situation, I can read many books and talk to people who are. Same as with someone who is blind or deaf.....I can't be them but I can get an idea about what it may be like for them. People like Tristan don't write books and there is no use asking what they're thinking or questions about their relationship to society.

Stop this sillyass generalizing and candy coating. Every situation is different.


Spaw