I'm really depressed by other parents sometimes

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On some other message boards I read there are very well informed, paying for a ton of experts, in the USA parents who have very young children(under 10) with varying degrees of autism. They really helped me a lot, reading their experiences and I respected them. But many of them have a "cure them or dump them" attitude, saying they are pinning their whole hope on ABA or other therapies that are costing them dearly. And if it doesn't get their child functional enough to work, have a spouse, friends, basically become normal by age 18 then they might as well just institutionalize them. That is exactly how they phrase it, some even say they are losing hope already because of how far their child is lagging behind normal peers. They will post hoe the expensive experts they pay for tell them "your child will never do X, X, or X". Some even recommend institutionalization or group homes, for kids. They will say the idea of their child friendless at age 30 spending all day on their special interest in their bedroom wakes them up in terror.

I was never diagnosed, I assume I had some form of autism or ASD(I was not verbal until age 6) and at age thirty after a hard life I'm happy. I have no real life friends, I find online friends and socializing easier and more enjoyable, and I am content with this. I have a wife who loves me for the weirdo I am, and interacting with her and my son is all the interaction I need or want. I work online, I've never been able to swing a real life job for more than a few months. I am worried about money and the future, but right now I'm supporting myself and family. But my days must seem like torture to these people, minimal human interaction, working on a computer, spending time on special interests or watching movies, cooking and other housework. My son is three and non-verbal, and I'm not going to rush to judge to how functional he will end up as an adult.

And really all I want is him to be happy and enjoy his life. If he needs SSI and wants to spend his days on a special interest I'm fine with that. If he wants to live independently I am fine with that. If he wants to try a group home I'm fine with that, if he wants to live with us I am fine with that. Basically I want him to be happy.

I realize not everyone is able to allow this, they have other children or have medical needs or have severely autistic children. I get it, I'm not here to judge or shame or proclaim myself superior to others. I'm not at all.

I'm just disturbed by the idea that even the people with money and experience and drive to be involved see anything less than a normal typical life not worth living or bothering with, if it doesn't work out just institutionalize them. I guess I kind of idolized and looked up to these people and idolized the USA as the best cultural area for autism, the most enlightened. And I was just let down to hear people say no job, no spouse, no friends equals not worth living. I don't know.

People can be really depressing. The thing to bear in mind is that the most depressing sentiment only comes from some of them and they sometimes change.

A case in point can be seen here: http://articles.mcall.com/1994-04-24/ne ... -klux-klan

The other thing is, they are trying to do the best they can within the limits of their experience, culture, expectations, biological predispositions and current frame of mind. Most of them would likely be mortified if they knew what message they were sending to you.

I think it likely they would deny that their statements should be seen as tantamount to a declaration that your life is worthless--they just can't see outside of the very small view that their current preoccupations have given them.

People are mostly driven by fear and desire. In this case it sounds like they are in the grip of fears that their children will be unable to support themselves or live independently. Some people are so imbued with the cultural mythology of rugged individualism and "picking yourself up by you own bootstraps" that they really do feel a dependent life is not worth living." Sad, really.

I think most of them would be very relieved if they could know that their children would find a life like the one you live, but can't imagine any sort of happiness outside of a life that looks mostly like what they know.

When I was young, between the ages of 9 and 13, I wanted to die. Life hurt and I couldn't see it getting any better. The worst thing was the gulf I felt between myself and other people. "Society" was my enemy, I felt. There was a collective demand from others that I be someone else, someone I could not be and that I was simply unacceptable just as I am.

Then one day, a new thought came after a deep depressive episode during which I unconsciously walked from my school to the overpass on interstate highway 95 that was my suicide plan A ( the fall to the roadway should be fatal, but if you should happen to survive, impact from vehicles would certainly finish the job.)

A thing happened: a new thought came as I stood on the bridge, thinking about going over the side, amazed that I was there--In those days of very deep depression, I had a series of blackouts. It was during one of these that I made my way to the bridge. I was at the school, then I lost track of events and when I next became fully aware of my surroundings, I was at the bridge, out on the bridge.

The thing that came to me was this: Maybe "they" all (or, let's be honest, mostly) feel that way. Maybe you are the only one in the world who sees things your way. So what? Their expectations, the box they want to force you into, all that makes you feel worthless--all that is causing you so much pain that you want to make an early exit. But consider:

You have known happiness. It may be that life feels like a river of misery with a few bubbles of happiness in it, but weren't those the best thing? If you die now, you get no more of those. So to hell with all of them and what they want. Live now for what you care about and the joy you can find.

So I walked off the bridge and decided to try to live a new way, really going after the things I cared about and not giving a damn about society, convention, what other people thought.

It's a viewpoint I cherish and at moments like these, reading about these sad, foolish parents, I hold on to not giving a damn what they think. If they believe that a disabled life, a dependent life is not worth living, to hell with them. They are wrong.

Onward to the good things. The breathtaking beauty of reality is always there, no matter how nasty the thoughts and cultures of humans may be. Kindness and compassion are real, regardless of how cruel many or most of them can be. The freedom of the imagination is real and really infinite, no matter how limited their views might be.

So let's get on as best we can and make life better with kindness, beauty and joy. The first person you need to be kind to is yourself. Don't let these people get you down. I live in America and they don't represent me. I think ASDmommy, DW and InThisTogether are American and they don't think like those people who depressed you.

We are all human and we are all self-aware configurations of atoms processed through the lives of ancient stars. There is a bigger picture here and the views of these sad, fearful parents are ephemeral and ultimately inconsequential. Forget them and enjoy the moments of your existence and share a little of your capacity for pleasure with the people around you.

Wow, is that beautiful Adamantium!!

The only thing I can add is that it chills me through and through when I encounter what seems like acceptance and love, but underneath is a parent who cannot accept who someone really is. The parents I've met who are this way seem proud sometimes of their child's progress, but they want to eradicate difference. And no one is good enough until they are normal.

I agree that sometimes this attitude softens with time.

And sometimes too the parent seems to have a lot of ASD traits, and you realize, this is what they've been taught about themselves. Which is really sad. As Adamantium said, they are trying their best, though.

That is why I stay off curebie sites. I worry enough as it is.

For once I was too terse, because I was tired, so edited to add:

What Adamantium said was well said, as usual. I do not understand the curebies, other than that I can understand the impulse to fix things that put your child at a disadvantage. I understand being frustrated and exhausted and all of that. That said, I believe that when one creates a life, one has a unique responsibility for it. What the OP describes sounds like an abrogation of that duty and for lack of a better word, cold.

Maybe the words are spoken out of exhaustion or frustration. Maybe they are not meant. I do not know. I just don't like those kinds of sites and stay off. They seem to vacillate between extreme hope and extreme negativity and there is not much moderation to be seen. I don't think they are designed to accommodate people with differing perspectives, though I can't honestly say I have looked at any of these places very long.

The world is a cold, hard place sometimes, particularly so for people on the spectrum,as Adamantium so eloquently stated, and frankly part of me scaffolding my own environment, is not seeking out things that I know will harm me. Those sites sound like this to me.

There's another side to the curebies that drives me nuts: my mother, for instance, insisted that offering supports and special treatments was a bad idea and that I just "didn't apply myself." I did finally adjust, but it took YEARS of therapy, which I'm still in - I am just now getting to the part of dealing with my own deficits, I had to spend so many years un-parenting myself.

I know that my mother was making her best guess at the time. I also know that she made that guess (probably due to her own relationship with the spectrum) without getting to know me as an individual and without moderating her parenting based on who I was. To this day, she still has no idea who I am or what I like.

That's a big problem with parenting - when parents pick a "method" and stick with it. That isn't the point - the point is that every kid is different and what they need most is a parent who is RESPONSIVE. A parent who is actively trying to learn what is best for that individual child and actively trying their best to do it. That can be extra challenging with a kid on the spectrum because the communication deficit makes it difficult to figure out your child's needs - but that doesn't mean it can't be done.

Adamantium, thank you for sharing. I am so sorry that you lived in that space - I have lived there, too. (In fact, one of the things that stopped me - jumpers often inadvertently become murderers. There is no safe way to do it that guarantees no one else will be hurt or traumatized.)

I hope that, along with your decision not to take that road, you've also found the peace and contentment you deserve in life.

Every person wants a perfect child and they always want to fix what is broken because they want what is best for their child. They want their kids to be successful and be able to live a normal life. I think their intentions are good because every parent want what is best and they think helping them and having them overcome their obstacles will make their lives easier and they will be happier. Look at Temple Grandin or other ASD folks who are now successful and they were not always that way because they had help when they were little.

Also no parent wants their kid living with them for free and living off them when they are adults unless they are disabled. The parents there are seriously thinking about institutionalizing them? I thought those days were over. I know they go to group homes now. Even normal people don't always get married and have kids. There does seem to be a stigma about the disabled and them not working so people feel they are not worth it to society. Even some disabled people feel bad about themselves because they feel a burden to society and my husband felt that way too. I think it's the stigma about not working is what makes them feel this way. They feel they are not worthy and not worth living. It's always drilled into us growing up, including normal kids, that everyone needs to work, no work, you're lazy. So I can see why some people would feel bad when they can't work or find work. There are still narrow minded people out there.

I know my mom wouldn't have wanted me to just stay at home and do nothing and not work, even if I was on SSI but lot of parents feel that way I think. But fortunately I wanted to work because I knew as a child people who don't work are lazy and even Hey Arnold showed me that and I never wanted to be Oskar. I even remember being five years old and we were already being told about jobs and what people do for their job so we always went on field trips like to the post office and grocery store and that was in preschool. Also don't forget Go to work with your parent day at school where kids go to work with their parents to see what they do for a living. Yes I think all that teaches the kids how you have to work when you grow up. I don't think it's a bad thing, part of being a kid is learning about the real world and getting prepared for it and the kid doesn't just turn 18 and automatically know how to be independent, they are taught that growing up and sadly not all parents realize this so they never teach them and then they are stuck with a bum at home and the parents are frustrated and unhappy and can't get their kid to get a job or move out or pick up after themselves or help out around the house. I'm like geeze what have these parents been doing with their kid? Do they think when kids become adults, they will automatically be adults all of a sudden if they were never taught as children nor ever expected to do things as children? Now they are surprised their kid is lazy? So I can understand why parents would also want to help their special needs kids and I do believe their intentions are good and I think it would be bad if they never helped them but the attitude you expressed those parents have sounded bad and I don't think all parents think that way about their kids when they are giving them therapy and spending money on them. I have seen plenty of posts here by members wishing they were diagnosed early so they could have gotten better help and would be better off today so I was lucky I had a mother who helped me from a young age and I didn't need a early DX for it. I know all parents try their best and not everyone can do what my mom did or have the same support my mom had because it was a fortunate she had neighbors who worked for the school district or as a special ed teacher, speech therapist, occupational therapist so she always got advice from them and not every parent has that support and my mom was smart to figure out how to help me without making me feel like I had something wrong with me and I needed to be fixed.

As Momsparky emphasizes, it is about the individual kid. and the range in abilities is really vast. What I think the OP was especially appalled by was what the OP worded as "cure or dump," which is very different from encouraging your kids to be the best he or she can be. It is not the same as encouraging a child who has the capacity to be independent, to do so. It is an attitude expressed as either be capable or be dumped. I also suspect based on what the OP said, that these are parents with kids with a range of abilities who have a "deadline" for their kids at 18. 18 is not a magic number for NT kids, much less for autistic kids. Can some kids on the spectrum be independent at 18? Sure, but not at the same percentage as NTs by a long shot. NT kids who go to college with financial help from parents (a socially encouraged thing, mind you) are not independent. Nor are the ones who just can't get jobs or can't live on their own on what they make. Parents do not just kick their kids out under these circumstances. Some do, but I would be surprised if most do.

Not to mention that a lot of these kids may have receptive language,but not have expressive language; and the parents are saying this in front of them, thinking they do not understand. I absolutely believes this happens.

That said, I have no idea if that subset of parents is really that literal and rigid. Maybe they think a group home will give them good skills, or are thinking about it in nicer terms than they are expressing. Maybe they are not thinking about it as "cure or dump" so much as after they do x,y and z, they don't know what comes next and are looking at preparing their children for life after they die. I don't know.

What I find bizarre and distressing in the words of these parents is that they seem to imply that their children only have value in proportion to their utility in furthering the parents family ambitions. Better to exile them than waste resources if they are of low utility. These are people, not implements!

Who is it in these families that is supposed to have a deficit in empathy?

Crazy and sickening.

Thank goodness that there are others like you who gather here.

Edited to add:
Thank you for the kind words, Waterfalls, ASDmommy and momsparky-- That day on the bridge was back around 1978. While I don't think one is ever quite free of those thoughts once they have been seared deeply in, I am often peaceful (within the constraints of a person with panic disorder) and happy. I know how to really savor the joy in my life. I cherish time with my family and I am childishly gleeful about the things I love: clouds, water, waves, stars, patterns great and small. Life is mostly good and I try to make it better.

Well, in the family where I was raised, clearly both of my parents had one (and probably because they were on the spectrum.) I do think we, as a group, need to remember that many parents are suffering from autism - and I mean suffering, as opposed to those of us who have figured it out and have managed. I know my mother wants some kind of relationship with me, but she's so rigid that if it isn't the relationship as she defines it, she wants nothing to do with me. The only reason we have a relationship at all is that she just assumes things are going her way.

I'd also note that I frequently tell DS that he's supposed to live on his own when he is 18, but I am not in any way going to hold him to that if he's not capable: I just know that if he doesn't have a goal in mind, we'll never get there. We talk a lot about what it will look like (living in a dorm, moving up to an apartment, etc.) so that he's comfortable with the idea. I also talk to him about our goal of his independence - but if he doesn't get there...well, I'll be surprised as we seem to be going on that trajectory, but I'll be OK with that, too.

Point being that it's possible to hear things taken out of context that sound worse than what they are (although I am certain there are parents out there who do consider their disabled kids to be an inconvenience and act accordingly - I've run into parents who consider their NT kids one.)

I discovered a "curebie" site for children and teens not with just autism and AS, but with other disabilities and mental illness as well. I actually think stumbling upon it legit traumatized me. The majority of the parents that post there are SO narcissistic, SO judgmental, SO rigid, and SO insensitive to their childrens' sensory issues/likes/dislikes/traumas it takes one's breath away just to read a few of the threads. Instead of hearing stories of parents nurturing their children and giving them the love and sympathy they need, they rail about how their children misbehave on purpose to torture them, blame them for their alcohol consumption ("she's driving me to drink" is what I once read on one thread) and boast about how they remove their child's special interests to encourage compliance and oftentimes leave them with nothing but a mattress and one change of clothes in their room as punishment for behavior beyond their control. What's more, they get new members every day....it just makes me sick....and unbearably sad.

In fact....*takes out toothpaste cap* See this toothpaste cap? I keep my faith in humanity in it.

In every given group of people, there are people who suck. I also follow ADDitudeMag, since a lot of the advice there tends to overlap with our needs. Just this week they emailed out a thread where a woman was reaching out for help for her relationship with her ADD husband. The general response was horrifying.

Contrast that with this story: Just the other day, a kid in DS's improv group - who strikes me as being on the NT side, if not wholly in that corner -spontaneously came up to me to tell me how smart and funny my son is, and how well he's doing in the group. That group has lots of kids who are different in one way or another, but it's clear that they are all being taught to support each other. I think the school is working on that, too.

As I was just saying to my gay friends who were upset over a congruent website - don't judge humanity by the a-holes. Look how far we've come in just a few short years when it comes to homophobia. Some people take longer to "get it" than others, but eventually those people will find themselves on the wrong side of history.

I just hope you're right about what you say here.

I think it's coming. It probably won't be quick change (I am amazed at how quickly attitudes towards gay people changed - when I was in college not only gays were actively shunned, but also straight people like me who were their friends.) but I think it will happen.

Look at the number of autistic and AS characters on TV. They're starting to trend towards ordinary: at the beginning they were all babbling craziness or psycho killers, now we have a fairly ordinary kid and his quirky photographer buddy, and some random non-identified-but-clearly-AS people in various sitcoms. Not perfect, still showing signs of stereotyping - but the stereotypes have become lighter and more acceptable.

Baby steps.

momsparky is right. But you owe it to yourself and the people who will be influenced by you to bring equal or more attention to the evidence that supports what she is saying, rather than fix your focus on the evil and awful stuff.

This is why I think you should stay well away from that AS hate forum. Constantly exposing yourself to hateful fringe views can distort your sense of reality and make those extremists seem more typical than they really are.

I have this conversation about New York with people all the time because I run into people who fear and loathe this great city. They point to stories in the news about terrible happenings in the city and believe that these constitute clear evidence of terrible place. But I point out to them that I see gratuitous displays of kindness in the city every day.

People helping strangers out of sheer decency and compassion. Toddlers walking with their parents through thousand upon thousands of strangers, unassualted by any of them. Millions of drivers controlling lethal power in the form of their cars who don't run people down or make them run for safety. Countless encounters with strangers who could victimize each other but don't.

But the ones who consider the city evil think the two or three horror stories that stand out in their minds are somehow representative of the many millions who live and work there. It's a completely distorted view an something they impose on themselves by putting their focus on a few stories of violence rather than paying attention to the evidence of their senses that show the vast majority of people behaving well and even being kind as the negotiate life in the city.

I am not a great fan of Nietzsche, but this kind of thing reminds me of a famous quotation from him: "Beware that, when fighting monsters, you yourself do not become a monster... for when you gaze long into the abyss. The abyss gazes also into you."

When you go to those sites, the abyss is gazing into you--but you are choosing to be there and you have the choice to bring your attention elsewhere and leave that dismal gaze.

this is wonderful, thank you Adamantium. i wholeheartedly agree.

the only true enemy of any individual human being is cynicism--that's my personal philosophy in a nutshell. i'm not unrealistically optimistic either, i simply believe in a balanced approach--and cynicism leads to its own bias, it warps your lens.

I for one do not want to institutionalize my 10 year old son but he is a danger to himself with self injurious behaviors, willful destruction of things and the insatiable urge to elope from our home and into others' homes unannounced. I'm hoping he finds a suitable replacement for these urges but until then even the "experts" who work with my son are telling us that he will likely never be able to live independently. FWIW I'm forcing myself to cling to the hope that one day he can live in a group home and hold down a part time job for supplemental income. Most importantly though I want to see him find a way to overcome his frustration and anxiety and find something that interests him enough to occupy his higher functions if not some latent talent. For example, I'd be happy if he became a musician and took up the drums. He is a high energy kid who is always in motion and loves banging on things, yet music calms him.