Made the mistake of reading the parent's forum

Post Reply New Topic

I am very thankful that you live in a tolerant world where ASD kids don't have to learn to "pass" if they want to survive.

We aren't all that fortunate.

It's an NT world. Survival means learning to function in it, on its terms.

I don't like that either. I think it's sick and sad and wrong.

If I could, I would rearrange the immediate world to better suit my ADHD son. I don't want to see him lose his bright colors and become stressed and exhausted and bitter like his ADHD father (chose a career requiring too many modifications, with only money as a reward) or his ASD mother (learned that "passing" was about more than getting through playgroup and getting paid-- it was a statement for or against her human worth).

I can't do that. All I have the power to do is what was done for my ASD self-- make home the safest place I can without lying to him, teach him to fit himself into the world (by changing who he is if necessary), and teach him to find places where the changes required are minimal and the pleasures of those things outweigh the effort and sacrifice involved.

I'm glad you've found your way to the Ideal Plane. Please help the rest of us get papers so we can emigrate.

One final fact: I am not going to live forever. You are not going to live forever. None of us here are going to live forever.

ASD, ADHD, and a fistful of comorbids aren't terminal conditions. They don't reduce the temporal limits of the human life expectancy. In other words, unless something tragic happens, our precious atypical kids are going to outlive us.

Some day we're going to be old and infirm; though our darlings may do a wonderful job of spoon-feeding us farina and changing our Chuxx, we will no longer have the faculties to shelter them. Someday we're going to be dead; though our darlings may execute our last wishes faithfully and grieve us like to put a Victorian poet to shame (God knows I'm still grieving my father, five years post mortem), our acceptance and protection of them will be at an end and THEY WILL BE ON THEIR OWN IN A HOSTILE WORLD.

The most fortunate among us might be able to leave our children property and/or money (my father left me three and a half acres of good bottom land up a holler, ten miles from anywhere). Most of us won't be able to do that (and I had to fight my stepmom's sister tooth and nail for it-- something I wouldn't have had the emotional wherewithal to do on my own). Even if we can, they will have to be able to manage it so that it's not squandered, ruined, or otherwise basically useless to them, and THEY WILL BE ON THIER OWN IN A HOSTILE WORLD.

When we're gone, no matter how much we love their quirks, they must be able to survive. Because if they're not, they won't. They must be able to maintain emotional regulation and self-control well enough to not get thrown into custody-- because if you think the grocery store is a rotten place for ASD, jail is worse (and locked wards get boring quick).

They must be able to care for themselves well enough to eat and bathe and keep an apartment sanitary-- because spots in group homes are limited and expensive, you can get thrown out for melting down all over the staff or other residents (in the States, anyway), and they're going to go to the neediest, the wealthiest, the best insured, and the best connected among the most profoundly affected (and other than Holland and a couple of others, that's not our kids). You can, by hiring a lawyer and doing a lot of wrangling, get a rent-controlled, subsidized apartment in a part of town that's likely to get you killed if you're not careful-- and you can also lose that for being a nuisance or not keeping it something like clean. If they can't do that, then they stand a good chance of freezing to death in a box or on a bench somewhere.

Ideally, they need to be able to look normal enough to hold at least some kind of menial job. There are disability benefits out there-- and I hear they're better in Europe and AU (at least in some ways) than in the USA-- but here anyway they are limited, stigmatized, and capricious. They change every time the administration in DC changes (every 2 years, give or take). They aren't enough to live on unless you are very good at working the system and very, very frugal. You can expect to be treated as subhuman if it's known that you receive them. And as corrupt and profligately wasteful as our government is, they aren't going to be around forever, even for the most desperately deserving.

And that's BEFORE you get into radical conspiracy theories.

The upshot of it is, it's not really about thinking our kids are wonderful the way they are or not. Most of us think they're delightful (at least in general) and tell them so on a daily basis. Most of us would like nothing better than to find or make a world where they can "be themselves," in all their atypical glory.

But in the (NT) world we have to work with, they will not be able to survive if they can't blend in. We want them to survive; if they're going to do that, then by hook or by crook (or by medication if it comes to that), they have to be able to meet the world about 3/4 of the way.

I read through a lot of the replies here. I find the various responses and perspectives rather interesting (sometimes I like to take on an outsider's view).

I think it just boils down this: Everyone knows the world is cruel. Everyone knows this. Unfortunately, sometimes parents have to take an action that will not be pleasing to their child in order to prepare them for the world.

If it were up to me and I had a kid, I would just let them pee all over the place and poop wherever they wanted, you now, like the animals do. The reason parenting is so difficult is because of society. The whole entire world knows society is wrong and yet it is the most benevolent thing to teach them how to assimilate into it. Does this seem weird to anyone??

I don't know. It's just weird. Animals, they poop and pee wherever they want. Humans don't do this.

Lol.

Well, very true.

I have nothing against toilets. I use them myself.

Sorry, I'm used to having to rationalize everything to my son.

I have a statement to throw into the mix, to see what people think:

It is one thing to give your kids the skills they need to "pass" when they want/need to.

It is an entirely different thing to force them to "pass" because it is what you want for them.

I will admit. I love my kids, even when their quirk is in full blazing glory. But they both can pass fairly well. And if I am honest, it is because I have helped them learn how to do it. Painstakingly. We have spent hundreds, maybe even thousands of hours on it over the years. I don't think that means that I don't love them and embrace their neurology. I am confident both of my kids know I love them just the way they are. But I definitely have taught them how to use the toilet

Androbot01, Do you think there is a difference between feeling like you have to pass, and feeling like you can pass if you want to?

It is a bit like code switching except for a couple of very major differences. The first is that the "programming" we switch from is wired and not just imprinted upon us by the surrounding local culture. The other, is that if you are lucky, you may have your immediate family and a few others accepting of this intrinsic programming. Most of the time out in the world is spent having to code-switch to something the culture at large finds acceptable without the comfort of having a lot of buffering.

At the same time, when alone (or with a select few) you can turn it off without having to become it. So you don't have to change, but you do have to be able to blend to a point.

(I remember seeing a reference to code switching by another poster and liked it. I apologize for not remembering who to attribute it to.)