Made the mistake of reading the parent's forum

Post Reply New Topic

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.

There is nothing contradictory.
I am who I am, but I also function mostly independently in life.
My parents didn't try to change my personality and quirks, but they did teach me practical skills to function in life.

That's not because of being on the spectrum.

Everybody changes. Every day. NT, ASD, and anywhere in between. I mean, I am not sitting here typing in diapers and drinking milk from a sippy cup! It is not wrong to change ASD kids. However, it is wrong not to help them be the best "me" they can be. They need to develop. They have the right to develop, just like anyone else.

The key with atypically developing kids, I think, is to make sure you are not trying to force them on to someone else's developmental trajectory or timeline.

I think everyone is misunderstanding what yippyskippy is saying, she is pointing out the contradictions she is reading here by different members. Some are saying how it's wrong to change ASD kids and there are lot of other posts in this section talking about what tools to teach them to help them live a better and easier life by the time they are adults so they can be the best they can be. I think "change" is a subjective word and the OP did make a provocative post rather it was intended to be or not and some of us read it the way OOM did because we all share the same definition of the word while the OP may meant something else by it. I am not sure what the OP meant by the word and what she means by not changing her autistic child. Does she mean not helping him improve so he can live a better life and not teaching him any skills or any basic social skills so he can get employment when he is an adult. Even Temple Grandin says we need to learn some social skills to have a job and she has met parents who won't teach their autistic kids anything at all because they accept them too much but she sees there is no way their kid can have that career in their interest if they have zero social skills. To me this is scary if this is what the OP means so that is why I haven't bothered to ask because I fear what her answer will be.

Look at my ex for example. He was so into being who he is it affected him and then he was so surprised when I dumped him after he acted cool about if we break up when I started to talk about it. Then he said I gave up on him and what the hell is that supposed to mean? He wasn't even intending to change so how could he say I gave up on him? Maybe he meant I gave up putting up with his BS. But he called himself a screw up and told me he was and I was like what, how could he say this if he refused to change? Maybe he screwed up because he refused to change so maybe that is what he meant by he is a screw up. "I am a screw up because I am so into being true to myself it screws me up with people and my relationships I have had with people but I will never give up being me so I feel so sorry for myself poor me. No one accepts me." Unfortunately if a parent has a kid with this attitude, there is no way they will be able to get them to change and learn. It takes a learning attitude to change and for someone to change, they need to have one or else it's impossible for anyone to help them change. Even therapies will be useless because the person would still be stuck in their ways and reject any tools they are given. My mom calls this a mental illness and suspected this is what he had. Sadly some parents are this way about their kids too so they fail to get them any help. I wonder if she would also call this a mental illness.

If you look, in a thorough manner, on the Site, you'll find lots and employed and married Spectrumites here. They benefitted from the people-first/Spectrumite-second philosophy.

One has to encourage--and sometimes even urge--people toward doing the best that they could do. Being a Spectrumite does not guarantee failure socially.

emax10000, I appreciate the beginning of your post, just to say that upfront.

Granted, I am not here as regularly as I have been in the past, but this description does not sound like anyone who regularly posts here, unless you think that any time a parent is frustrated or says anything less than positive about their kids, they do not "belong" here or they do not "need" to be here...

..."here" being a parent's sub-forum...

Where most of us (parents)--maybe even all of us--know exactly what it feels like to be frustrated, exasperated, and discouraged.

Not because our children are huge disappointments or burdens, but because parenting is hard, and sometimes parenting atypically developing kids is even harder.

One of the main reasons I post here is because there are people who are on the spectrum themselves who provide insight and feedback. I find it to be important, and it is missing in most parent-focused forums. But I don't see how a parent sharing their experience or the difficulties they are facing raising a kid on the spectrum would make someone on the spectrum not feel like WP is a safe environment, ykwim? The parents' sub-forum needs to be a safe place where parents, whether NT or ASD, can come to share both their insights and their fears.

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.

There is balance here. And there is acceptance. I guess I am saying that ASD-friendly parents need a place to belong, too. So while I think it would be blatantly inappropriate for anyone to go on one of the general forums and "complain" about raising their aspie/autie kids, I think it perfectly appropriate here, so long as that isn't the only contribution a parent has, ykwim? Just because a parent is struggling or grappling with a difficult decision, it doesn't mean they should be judged as not appropriate for this forum.

Ee gads. My ADD is kicking in. I am unable to link any of what I have just written to the OP. So I am probably speaking out of turn. I guess I am just trying to say that I find it helpful to have an ASD-friendly place where I don't feel judged, especially by people on the spectrum, because I need that feedback and insight. My kids need me to have it. And I like to think of the parents' sub-forum as a little safe haven for all of us to talk about the challenges without feeling judged as ineffective, inappropriate, or abusive. We get enough of that judgment in the real world.

I adore my ASD son but, like with any child, there have been times I couldn't figure out how to solve something him and I were struggling with. When that happened, I would post the problem.

It doesn't mean anyone thinks their child is less than amazing. It means they need help solving one specific issue.

This is what parents do: ask each other for help with the most difficult child-rearing issues. Please don't take that as a representation of what we think of our lives with our kids. It is only a representation of how we are feeling with respect to the one, single issue. We'd have issues with NT kids, too; just maybe slightly different ones requiring different answers.

When you understand that, you understand the posts in this forum.

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.

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.

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.

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.

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.