Made the mistake of reading the parent's forum

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B19
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16 Feb 2015, 6:44 pm

ominous wrote:
Howdy. I'm not going to read most of the threads here or comment on them. I'm looking for other parents who are very happy with their autistic children and who aren't looking to fix them or medicate them. Please do not respond here with labourious comments about why you want to be or should be all the things I'm trying to avoid. I'm autistic, and I find it upsetting to read comments about how difficult we are and how we need medication, etc. I'm also in Australia, and we don't seem to medicalise autism nearly as much as the USA does.

So, that said! We are 46 and 12, respectively, and have a cat who is 4. We live an hour outside of Melbourne. I am a single parent, a 'radical unschooler' and generally an oddball. Our family works based on mutual respect and mutual aid, and I am teaching my child how to be independent in a sort of different way to most. We both have issues we are overcoming and/or learning how to function with due to our autism, and we are fashioning a life of joy and happiness despite the NT world.

Are there other parents out there who are like me? I may well avoid this forum section altogether as I find a lot of the posts exceptionally sad. I get angry when I'm sad and don't want to alienate people who are struggling to parent by becoming angry with them. I think parenting is the hardest job ever, but I think that is the case whether or not you're parenting a child with ASD.


I too never medicated nor tried to "fix" my children, I did get some speech therapy for my son when he was 8 as he was delayed there, though that quickly helped and apart from that they were just their lovely little selves. I share your concern about the "must fix them" mentality - there is a fine line between supporting their challenges and fixing them as if they are a broken type of human being. My approach was to play to their strengths, build on their islands of competence, always inspire them with possibility. Every child has some kind of challenge, value them for who they are, acceptance is essential to emotional health for children.



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16 Feb 2015, 7:22 pm

InThisTogether wrote:
.

You might be surprised how few places there are like this sub-forum out there. In other places, I have been torn apart for "not doing enough" to "cure" my kids, or for saying that I don't think there is anything wrong with them, or for saying I wouldn't "cure" them even if I could. In other places, once I have voiced my conviction that I am fine with autism, the minute I raise an issue or share a struggle, I get bombarded by people trying to convince me that this is why I need to get them cured! Or that this is why they need to go into a hyperbaric chamber. Or that this is the reason they need to be chelated. I have been preached to so many times regarding those things--that I just don't believe are relevant to the circumstances that my family faces, that those places no longer feel like an option for me.


This was exactly my point, or rather, exactly what my point was supposed to be. If that was not clear it sounds like my communication skills even online (where verbal nuances don't further complicate things) are not quite up to par yet. I was not necessarily insinuating that any such posters exist currently - I have not followed this site enough yet to know for sure if there ever was such a sentiment from any parents here - but noting that the first few posts suggested the possibility of a slippery slope towards that direction and that having parents who do say those things, and have that martyr complex I and others have mentioned in the past, should for future reference be at least actively discouraged.

As far as what you are saying above, that is exactly the kind of material that should be shared. In fact my impression was that the frustrations you outlined above were among the key reasons this whole site was founded in the first place, since as you noted, at times it seems virtually noone else on the web or in real life seems willing to listen to those kinds of difficulties in quite the same way people here do.



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16 Feb 2015, 7:31 pm

emax10000 wrote:
This was exactly my point, or rather, exactly what my point was supposed to be. If that was not clear it sounds like my communication skills even online (where verbal nuances don't further complicate things) are not quite up to par yet.


It could be me, not you. I sometimes have a hard time following posts with a lot of text (ironic, isn't it, since the most "texty" post on any given page is likely to be mine), and I have an even harder time following longer threads like this one. And for some reason, the fact that I don't "know" you yet, makes it even harder for me to follow what you might be saying. I think because I lack a context, you don't have a "voice" to me yet, so your words are likely to get mingled in with other people who I don't have a "voice" for yet.

I am very envious of people who can follow long threads and make sense of it from beginning to end. I think I would need to make a diagram to be able to do that.

So it is settled. We agree.


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emax10000
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17 Feb 2015, 12:50 am

InThisTogether wrote:
emax10000 wrote:
This was exactly my point, or rather, exactly what my point was supposed to be. If that was not clear it sounds like my communication skills even online (where verbal nuances don't further complicate things) are not quite up to par yet.


It could be me, not you.

I just gotta say, I have seen thousands of internet threads over the years and this literally the first time I have ever seen anyone admit this without the help or force of a moderator. Thanks for confirming what is so special about our little wrong planet.



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17 Feb 2015, 6:13 am

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.


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17 Feb 2015, 7:23 am

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.


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17 Feb 2015, 8:01 am

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.



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17 Feb 2015, 8:12 am

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


Most animals don't poop where they sleep, though. To be on par with that, you'd have to teach your kid to do his business outside. But it's cold outside sometimes, and that's why we have an indoor potty.



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17 Feb 2015, 8:37 am

Well, very true.

I have nothing against toilets. I use them myself.



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17 Feb 2015, 8:40 am

:lol:

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



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17 Feb 2015, 8:49 am

BuyerBeware wrote:
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).

Thank you for saying this. Passing has a huge cost, because it never becomes natural. I spent so many years passing I eventually broke down. I am still struggling with identity issues to this day and I think I always will. That's the thing about passing. To be successful at it is to accept that who one is is not good enough and that to be worthy of acceptance in society one must act all the time and hide one's true nature. This destroys the psyche.

heavenlyabyss wrote:
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??

A catch-22 for sure.



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17 Feb 2015, 8:52 am

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 :wink:

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?


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17 Feb 2015, 9:09 am

InThisTogether wrote:
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?

Well, when I was young and undiagnosed I felt that I had to pass, desperately. I knew there was something different going on in my mind, something that I didn't want anyone to be aware of. And I became very good at it. For awhile.
After my diagnosis, I embraced my autism and for two reasons I don't try to pass anymore: 1) I no longer have the physical or mental strength to do it, and 2) I don't want to. These days I am trying to build my esteem and hopefully will one day find the self that I've damaged and hid for so long.

Honestly, I think you have to find a balance. Some skills are necessary for basic survival - like verbal communication. But smiling when you don't want to and making eye contact are not essential.

So to answer your question, yes there is a difference. If one has to pass, it is a violation against one's worth, if one can pass and chooses to use tools to do this, then it's up to the person if they want to.



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17 Feb 2015, 9:17 am

SignOfLazarus wrote:
CWA wrote:
In my case teaching my daughter skills does require her to change unfortunately. Part of who she fundamentally is is someone who does NOT want to work, does not want to work hard, and does not want to be challenged.... ever. Who she is is someone who is and would continue to be utterly content to be taken care of for the rest of her life, and thinks it will and should be so. It is not and will not. Therefore YES I have to attempt to change that aspect of her. I'm not rich and I will die someday. She is very smart and I believe capable of having a job and caring for herself, but not without some hard work now and for the rest of her life, which she is adverse to. I don't like it, but there it is.

That's not because of being on the spectrum.


Everyones brand of autism is different. In her case, this behavior and attitude is most definitely contributed to and complicated by autistic elements. It's next to impossible to tease out what is what, but autism plays a role. She only wants to engage in her special interests all the time, period, to the exclusion of anything else. It's definately an issue related to her autism.



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17 Feb 2015, 9:26 am

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.)