Am I wrong to think this way?

Post Reply New Topic

I was non-verbal as a young child, I eventually started talking normally around age 6 and had a lot of difficulties. My parents did not understand me at all, and even abandoned me basically in a mental ward for kids at age six. They told me to go upstairs and check out all the Star Wars action figures alone, and then when I tried to leave I was locked in and they were gone. It was horribly traumatic, I was allowed a phone call with them and I promised to talk and cried and pleaded and begged for them to come get me I promised to be normal. After a week I was picked up by them, because their insurance refused to pay.

The rest of my childhood was mixed messages, they denied anything was wrong with me but also treated me like I was "ret*d" that is the word they used, my sister has confirmed they always said something was very wrong with me. They started harassing me about how I was going to live once they were dead, how would I support myself. But they were rich and both blew millions, my dad had a plan to blow all his savings and commit suicide and then he backed out at the last minute. They harassed me to go to college but I didn't think I could handle it, harassed me to support myself but then would sabotage me by not helping me by driving me to interviews or jobs. I set up a business doing freelance computer repair through craigslist, and then my mom ruined a client by telling him I was ret*d. They seemed to want to degrade me and tell me move out, but then when I made an attempt they would try to stop me! My mom still insists my wife is somehow exploiting a ret*d, total lie my mom is a manipulative evil woman. She still refuses to see that me leaving them, getting married to someone I love, supporting myself financially, having and raising a child, is proof I AM FUNCTIONAL. She insists since I did not go to college I never turned my life into anything worthwhile and am wasting my life, I am still a dysfunctional ret*d being used.

Anyway this whole experience has made me very laid back with my son, I don't care that he is mostly non-verbal or if he isn't able to hold a normal job as an adult as long as he is happy. I say if his greatest joy in life is watching every episode of Star Trek back to back so be it(this was my life at one point lol). If he then decides he wants to try getting a job, going to college, moving out, whatever GREAT I will do my best to make his dreams come true. But if he doesn't, if he wants nothing more than to not socialize and play video games all day I'm not bothered by that. I'm not committed to unpleasant experiences or torturous treatments to make my son normal, he isn't normal he is what he is and that is ok with me.

I know from my own experience I often had no motivation to do the things my parents said if I did not do I would end up homeless, I just didn't care. But once I did care about something I could do anything, so I think the key is see what my son is motivated by and using that.

My wife however while loving my son with all her heart is nervous about his future. She says that sitting all day watching Star Trek(or whatever) is a hellish life and we need to stop that at all costs. My point to her is that it wasn't hellish to me, I loved it! Being forced to go to teen parties or whatever normal people do would have made me suicidal. Let me be clear here my wife is NOT abusive or degrading to our son, but she is still clinging to the we can make him normal idea. We can fix him with enough treatment, anything is worth it if it can fix him.

This nervousness about the future I don't care about, the way I look at it yes I welcome treatment to help him communicate and live his life to the fullest but I am not stressing about getting him to normal.

Sometimes I worry I am making a mistake in my thinking, I was just curious what everyone else thinks.


EDIT:To offer clarification I am not saying I would just let my son do whatever he wants, like he doesn't want to go to bed cool don't! I am saying more I accept he has autism and will never be "normal", and just want him to be able to live up to his abilities.

My wife thinks this a result of my f****d up parents abuse, and it would be a mistake not to push him to be more. She doesn't agree with what my parents did in any way, but does think the goal needs to be as close to normal as possible. That with my thinking no one would ever accomplish anything or be independent, everyone would be sitting on their butt playing videogames all day.

I'm arguing for a more personal lead journey, when my son is old enough like late teens asking him what he wants from life and what he wants to do and going from there. She is arguing for try anything and if it works great.

I'm trying to get across that she really does love him and wants the best for him, in case anyone doesn't think that it isn't true. She just sees acceptance of not normal as a sort of failure on our part.

I am open to the idea that my thinking is wrong or warped and could lead to a bad outcome.

I think your thinking is wrong and could lead to a bad place. Who's going to pay for the roof over his head while he watches back to back episodes of Star Trek (or whatever his personal equivalent might be)? Who's going to feed him? Who's going to pay for the electricity?

While your upbringing was clearly really wrong and that's not the way to parent your son, you've flipped all the way to the other side. Maybe a weird kind of black-and-white thinking.

I don't know how capable your son is - but wasted potential is painful. I think people are happiest when they live as productively as they can.

On the other hand, there are some really good qualities to your approach - acceptance, love - that shouldn't be discarded. But there's a balance to be struck. And your wife is right to be worried.

Thank you for the honest opinion!

To clarify further since I may not have explained it well, I see therapy focused on allowing communication or functioning like toilet training valuable. And some of the therapy like some ABA that only seems focused on reducing visible signs of autism a total waste, like spending hours trying to get a child to sit perfectly still or stop non disruptive stimming, if that makes sense.

And I certainly don't mean I would let my son just do nothing but watch videos as a small child, more that if he wants to do that during free time instead of more normal things I am fine with it.

I am focused on being able to financially support himself the best way for him and what he is able to do. I guess my philosophy could be described as if you're able to support yourself and live independently, who cares how "normal" your life is if it makes you happy.

I think the big mistake my parents made(aside from being horrible at being parents) was that they approached becoming an independent adult as a rigid set of steps that if they could not bully me into following I failed in their eyes. I think if they had approached me and said this is what we want to happen, what is stopping you from doing it? How can we help you accomplish this? Then allowed a more fluid flexible set of steps I could have gotten there much easier.

It is like what is absolutely needed, beyond that everything else is able to be personalized.

It will be difficult for me to explain well, please tell me if I'm not making sense.

We are also struggling over going along with DD or pushing for what we think is best. The issues are different, but the parent struggle may be similar. Maybe our struggle isn't the same, but what I think is that there is some that's right in what each of you are saying. But also for me at least when trying to be a partner, knowing that you and your partner found different paths for how to manage in the world. My husband is much more able to give the world the expected and go along. I can and do, to a point. But I think I miss more. When parents have different skills from one another, and different paths (and to me partners get together for a reason so where one is on the spectrum, the other has at least a familiarity if not themself being on the spectrum) are caring very much for any children, it becomes hard to do everything. Something has to give, and when a child struggles we want to fix it by trying harder and we try harder with what we think did work for us.......which may not be what our parents did. It could be others we liked better. And we try harder to avoid what we thought was bad.

There's nothing inherently wrong with pushing and expecting success, and there is nothing wrong with accepting ones child, and in fact children usually do need both. It's very hard for parents to stay together and be united in the face of the worry and fear that a child is not normal......read this is my fault/his fault/school's fault etc so if I just do or don't do x, things will be better. It's not that simple. I think the key is to acknowledge that things are not simple and not leave either parent out of the decisions about direction. Anyway that is what I am trying to do now.

I tried pushing my agenda and insisting on letting DD be DD more in the past. My husband hated having his way minimized because it isn't including both parents in the mix. So now, I try to respect that he may have a valid point even if I wouldn't have done things his way. Because in the long run, Darling Children ideally should have two parents that love them and feel and are involved, when that's possible, because it keeps them secure that people love them. So when my husband pushes normality, I try to listen. But I know that I want us to present and encourage, not punish or insist. And that including both my and my husband's perspectives so we are somewhat together rather than cutting him out is likely what is in DDs longer term best interest unless it's a really big deal (like I wouldn't have said no to speech or OT when she was little because he didn't like people in his house, but pushing or not pushing that's temporary, as long as we do it nicely and without demeaning her, it's more important in the long run to not cut either parent out and she has us both than letting him or me be cut out and the cut out one becomes marginalized and excluded, leaving DD who is isolated to start with, so much poorer in connections.

I hope that I made sense, I hope maybe what I wrote is helpful.

I like to think I have a middle-ground approach, but do not know if I do, exactly.

We are not rich, nor do we have relatives who we would trust to take care of him. Either they would be unwilling or there are some how would exploit him, depending on the particular person. So, my son has to be self-sufficient to some degree. That is really the main thing I care about. So I encourage (yes sometimes require) things that have to do with achieving that goal.

There are tangential social skills in additional to the executive functioning/self regulating/motor skills etc. needed to get and keep a job. I don't care about socialization skills that have nothing to do with that goal. So, IMO my son needs to understand social conventions well enough to apply for a job and keep a job in a work environment. Beyond that, he needs only what interests him, if he ever wants friends or an SO, etc.

It is a harder line to follow than one would think because so many social skills are important for work. Right now, my son is so behind that none of the foundational skills we are working on could be categorized as optional.

I'm not a parent, but I was a daughter who clearly had issues functioning as a child and while growing up. My parents never addressed what my future might be. Though academically bright I flunked out of school because of severe inability to cope with bullying and the social dynamics. I spent the next ten years of my life living with my parents, unable to function in the world, no job, no life except the one in my room with my books, music, small tv and inner world of thoughts.

Great.... except my parents were aging, unwell and ultimately both died within short notice of each other, and there I was in my mid twenties, never had a job, with older siblings who HATED me for being "the lazy good for nothing sponging off mum and dad." What they never knew was the agony I lived my life in, feeling guilty, a burden, useless, but also permanently frozen in inability to cope with life, in fear of the social setting that work would force me into, and unsure I could even cope with a 40 hour week of something menial and stressful because I'd trashed my education.

I was forced by the deaths of my parents to just take on that life anyway. I still work a job that kills me and will never make decent money. But even the fact that I've managed to keep a (rented) roof over my head for years now, when all my family thought I'd be dependent for th rest of my life and hated me for it, feels like an enormous achievement of survival, to me.

However..............just because I did "survive" a dependent start and a traumatic and unassisted forcing out into the world, doesn't mean I recommend it or that I'm boasting about it. On the contrary, it's been rough and my ill preparedness has colored my whole life since, despite every effort I made to correct course and strive.

In short, sure I'm functioning and I have never stopped trying to improve myself and my life and my responsibility for my own happiness.

But lets put it this way, if I could go back in time and choose to either be left alone to wallow in my room unencouraged to explore my options and basically written off as better off left in daze, or be compassionately and consciously helped to develop my possibilities with a view to easier transition into independence, well it's a no brainer which one I would have preferred.

You have to think ahead to "What about when we parents die?" Because that's going to happen, and with no other family members willing to have someone live in their spare room forever playing videogames until they die too, you have to plan now for what your son's future is going to be. I wish someone had done that for me when I was young enough to be helped toward my best future instead of the inadequate mess that is the only thing I've been able to create alone despite trying like hell.

I think there's a huge difference between accepting a child as they are, and not having expectations of them. My view of parenting is that it's my job to get my kids to reach their full potential, and yes, that includes forcing them to do certain things to give them many different experiences.

Personally, I think it's extremely important for children with ASD to have options in their own lives when they are adults. I don't want my kids to have been watching Star Trek for 15 years and have no idea how to do anything. Why? Because that make me sad? NO- Because then if they ever decide they want to do something else, they won't be able to. (Also I strongly believe that physical activity is important not just for physical health, but also mental health, but that's slightly besides the point). I think their childhood is the time to give them those experiences which will translate into options. A lot of the things you teach your kid, they may hate and they may never use ever again. But at least within all the "misses", you'll have "hits". I think it's my job as a parent to give my kids the ability to choose their own path in life. My kids most likely will require full-time assistance forever, but I still have goals for them- the goals are modified to be realistic based on their known abilities, but they are goals nonetheless.

NT kids don't necessarily want to try new things, but being forced to try new things shows them (and ASD kids too):
(a) what they actually like to do;
(b) that they can do things that initially seem difficult, if they persevere (increases self-esteem);
(c) how to start new things
There's no downside! The actual activity you forced them to do isn't really the point- they may absolutely hate it- but they'll still learn those things. You don't have to a have an extremely rigid idea of who your child will be, but I think you should have general goals ,especially regarding skills, for your child.

So that's my two cents...

I applaud you for your loving and accepting attitude for your son. I think home should always be a place where our kids can just be themselves and not have to 'fit in' to the NT world.

However the reality is that at some point your son will be an adult and you will not be around.

If you feel that your son truly will NOT be able to live as an independent adult you need to set up a trust and make arrangements for his financial future.

If you feel that your son MIGHT be able to live independently with some assistance you should still set up a trust to help provide for assistance.

If you feel your son MIGHT be able to live independently without assistance if only he got the right training and services now then it is imperative to get him that therapy/ assistance.

Unfortunately once our kids age out of school the programs that are available to help are very limited. You never say how old he is, but if he is a teen check into job training or even college for after high school graduation.

If he is still younger, start to focus on life skills he will need to be independent so when he is older so he already knows how to get up on time, fix his own meals, take care of laundry etc - all the things he would need to do living on his own.

You are a good Dad, but I think there needs to be a middle road between accepting who your son is and expecting him to be able to live as an independent adult.

That's going to take some time to digest and come up with a good response.

I don't know about totally wrong, but I think your wife is onto something-- I do think, 100%, that you are overcompensating for the egregious fucked-uppery committed by your parents. Being a Spectrumite, you're going a bit black-and-white with it, and perhaps running a bit too far to the other extreme.

I tend to be guilty of the same, if for totally different reasons (nobody really knew there was anything wrong with me, and basically let me grow as I wouldst, and I APRRECIATED THE HELL OUT OF IT, but I'm probably only 75% as functional as I could have been if someone had recognized the problem and got me the RIGHT KIND OF help). It's my inclination to let my ADHD kid bounce off the walls and accept consistent Cs and Ds from him, because I can see how much it hurts his brain to force it to focus...

...but I know I have to bite the bullet and push function, because someday Mommy and Daddy are going to be dead, and it looks like Big Sister is probably headed for a liberal arts degree.

To clarify the Star Trek thing, for a brief period as a teen my special interest was ST and I watched the entire run of all shows. I didn't feel like that time was wasted, but others did.

And I was not saying forget about supporting yourself or functioning, but that if you don't like socializing don't do it and do whatever else you want.

Basically instead of trying to force a round peg in a square hole, approach the hole from an autistic perspective and figure out how to pass in your own way which is weird but hey who cares.

I made a similar post to this when I ran into a parents forum where parents were saying stuff like "if all that expensive ABA we paid for doesn't turn him normal by 18 it was all for nothing, might as well have just institutionalized him" and it gave me flashbacks to my own parents.

I wouldn't say who cares, but some acceptance makes life a lot better.

Periodically as I complain about someone doing something, someone will say to me "you know she's obviously very disturbed" or "he has terrified everyone that's how he is, he intimidates" or "well look at their family life" or some such. For a long time, I was so used to being the weird one I couldn't do anything with this idea.

A parent saying if their child isn't normal by 18 they've wasted their time seems awful, oftentimes no one confronts this, but IMO few think that's ok. And the lack of anyone saying so may be more people don't think it's worth it to argue with that kind of ugliness than they agree. And I don't have a high opinion of people's behavior about kids on the spectrum. But this is a stand out really ugly thing to think. Or say. And as marginalized as I feel by other parents, that goes beyond even the nastiness that is normal and typical to experience.

There's a good thread about moms of kids on the spectrum feeling stigmatized and marginalized right now. Your wife may be picking up the blame of moms that occurs. If she comes to WR, maybe she'd get something from reading it. Because it can be easy to take in the idea from others that better parenting fixes everything, you're a bad parent because your child doesn't do x y or z. And that causes one to push harder for child to do x y and z, but this isn't helpful as despite the attitude of other moms about different behaviors and ways of thinking, they aren't actually reflective of bad moms or bad kids. But I do find people act as if differences are something to avoid, people with differences even more so, and this may be having a negative effect on how your wife reacts to him that is hard to counter. I think maybe more so if she isn't on the spectrum as its kind of shocking to encounter, even for me with AS. It's hard to imagine what this would feel like to someone who's never encountered it before against herself.

For the record, your wife is wrong too.

The goal IS NOT "as close to normal as possible." Making the goal "as close to normal as possible" is how you end up ME. Very able to pass, able to do parent-teacher conferences and housekeeping and playdates and maybe even hold a fairly solitary or menial job...

...and anxious, depressed, agoraphobic, uptight, and generally miserable with things that are, actually, just as disabling as autism if not worse.

The goal has nothing to do with proximity to normal.

It has everything to do with ability to function. And it doesn't start with social skills-- social skills are actually the icing on the cake. It starts with executive function and minimal communication-- the ability to do things like articulate basic needs (whether in words or otherwise) and sequence basic tasks, like getting dressed (because those are the precursors to things like keeping a house, cooking a meal, and driving a car/using public transport). Not the ability to not have a meltdown-- the ability to accept comfort (even if "comfort" is "getting the hell out of there"), eventually aiming for the ability to self-soothe and to see one coming and split before it blows.

The goal IS NOT "non-autistic" or "fixed." That's unreachable, unreasonable, and unrealistic (and also downright destructive). The goal is "the happiest, most independently functional autistic adult that can be built out of the autistic kid in front of us".

Happiest requires acceptance-- and you've got that in spades.

Functionality requires a degree of happiness. It also requires having challenges to attempt to rise to (reasonable expectations set sometimes just a bit above his comfort level, and sometimes relaxed to give him a chance to uncoil the spring before it snaps, the RIGHT kind of therapy done PROPERLY with an APPROPRIATE GOAL in mind). Because, well, the mind is a muscle. If he doesn't have challenges to rise to, all he will ever learn, actually, is the same thing your mother tried to bang into your head-- that he can't rise to challenges.

How far will he rise?? I don't know. Maybe he'll use 5 PECS cards and feed and dress himself as long as someone fixes his plate and lays out his clothes, and the staff will be glad he's generally not a PITA to change and get to the table. Maybe, 50 years from now when you're dead and gone, he'll be the middle-aged guy who keeps pictures of his beloved family all over his room, sings funny songs while he does the laundry and the cleaning for the whole damn group home, and loves feeding the pigeons on Thursday afternoon (when has a half-day off from "work") and irritating passers-by with talk about his job. There are several group homes in my neighborhood; I've come to the conclusion that those folks have true happiness-- the older I get, the more they remind me of my father.

Speaking of my father, maybe he'll be the odd guy who lives alone, works a menial job, watches his favorite show every night and all weekend, and takes in stray dogs and feeds 50 pounds of birdseed a month. Maybe, 30 years from now, he'll be having the same discussion with his wife over their son.

I'm sorry. I'm getting lost again. The point I'm trying to make is, I guess, that he needs both. A little push, a modicum of tolerance. Expectations, and celebration. He's an autistic kid who will be an autistic adult, but he's also a kid who will, like any other kid, most likely grow in the direction in which he is trained.

Your wife may be having some trouble "letting go" of the idea that he can be "fixed" and getting jiggy with the idea that he'll never be "normal." I gather that's pretty normal for NT parents of ASD kids. They have to get through that before they can get to "not normal" can still be "functional and OK." Be patient with her, just as you need her to be patient with your concerns.

Keep talking. As long as you two manage to meet somewhere in the middle, the child will become the best adult that he can be.

The goal is to maximize functioning without ending up with THIS as a heartfelt signature.

I think this is the primary struggle for all parents whose child is on the spectrum: finding the line between expectations that are too high and those that are too low. What makes this worse is that since uneven skills are a hallmark of the condition, there are multiple places where you have to make decisions about where the line is.

I would say this, though: just because there are some bad therapies and bad uses of good therapies doesn't mean that there isn't a lot of value. I think it's fine to hold therapists and caregivers accountable and make sure that they are also trying to find that line. If that means you aren't going to restrict stimming, that seems to be a pretty standard way to go on WP - as long as the stimming isn't hurtful or something you don't do in public (in which case your redirect the child to somewhere private.) I have seen the difference between my (very verbal and social) child and the kids who got early intervention - I believe that if he'd received it, he would have suffered much less in elementary school. I hear that you're not withholding skills that are critical - make sure that social and communication skills are included (and this may be what your wife is concerned about.) DS is the kind of kid people call "an individual" when they don't know he's on the spectrum - he doesn't conform socially, but he is learning to perform socially and that's what is important.

I've found that obsessive interests are a valuable currency with my son - not meaning that I restrict them (I do to some degree, mostly because there aren't enough hours in the day) but meaning that I can often use them to bring him around to all kinds of other things. We turned an interest in space exploration and guns into a serious interest in physics. Star Trek probably has a lot of potential to offer you tangential learning opportunities - maybe if you showed your wife how these obsessions sometimes are latent learning, she'll relax a bit.

Disclosure: I haven't read everything in this thread that carefully, so my apologizes if I've gotten the gist wrong.

Personally, I think neither approach is quite right. In my experience, you can't really "push" an ASD child or set expectations, because ASD kids don't handle stress very well. If you push too hard or expect too much, it will backfire.

But you also don't want to just accommodate every little thing and fail to teach them the value of hard work, and the value of pushing to be your best self. So you keep your eyes open for opportunities to "nudge" your child to work on difficult areas and acquire skills that don't come naturally to him.

You can "expect" your child to accomplish things that you really, truly believe he is capable of, but careful with that, that you aren't making a false assumption. If you see that you are, turn around. Immediately.

My son had some very, very difficult skills to work on that were literally painful for him, but he did, over the years, do the work. Why? I think a lot of it had to do with that fact that he knew we would never, ever ask him to do things he was not capable of, and that we were always willing to help and support him in any way we could. Sometimes we were wrong, but once I saw the signs of the stress build up, I pulled back. We've had to pull back a lot; not just us, but also when he has pushed himself too hard. He NEEDS an even path, one with breaks and rest and fun and time for his little obsessions. And he NEEDS more "down time" than the average teenager, to spend time being his quirky self and live inside his own head.

Would I say he performs at his maximum potential? While just looking at how smart he is one would think he doesn't, ultimately he is. He is always riding that edge of stressing out, and stressing out for him is a dangerous and negative place to be. So there just isn't more he could do, because the cost would be too high. We just have to accept that there will always appear to be untapped intellectual potential that arises from his limitations on ability to handle work load. At this point in his life, watching him, I think that is a reality that just, "is."

I have, btw, always tried to keep home as the safe place, drawing a line on the social behaviors between private and public. He can be as quirky and ASD in constant motion while at home, but when at school or out in public he is expected to keep most of that under control, now that he is 17. That was a slow journey, too, making sure he knew how to present in public.

I will tell you that he has mixed feelings about the above. He is proud of being ASD, and sometimes regrets that he now instinctively spends most of his day acting more NT. He knows that it has been useful to be able to present NT, but there is also a little sadness about it, that the world wouldn't have let him succeed being fully his own quirky, stimmy, self. I'm not really sure if there is an answer to that; the right balance is one of the toughest things we have to figure out with our kids.

Just because a child seems happy to watch TV doesn't mean doesn't mean it makes them happy
it could be an escape

You could talk to your wife about compromising
Your both right in many ways
Skills will do your son good but they don't have to be dull

There is a star wars cookbook you could teach cooking based on something he likes
Star wars is a big universe and there are books, games, and building kits.
Then work on slowly increasing his interests to other movies and things. I try everyone in a while introduce a new books, TV show.
I teach learning a skill might not be fun but we can reward ourselves.

In the interest of full disclosure, I only skimmed responses, but I see lots of really good thoughts. I particularly agree with this, 100%:

I. Completely. Agree. I do think there is a balance between the viewpoints you and your wife have. Yours certainly does seem to be a reaction to the terrible upbringing you experienced. I have three kids, one on the spectrum and two pretty NT (one with some spectrum-type qualities, though). I try to find the balance between allowing my son freedom to be who he is and pushing him out of his comfort zone. To be honest, I do that with all three, it's just the "comfort zone" is different with all three.

My son with ASD is quite proud of who he is. I am also quite proud of who he is. However, as a 7th grader, I can see where his social challenges negatively impact his ability to show his skills and benefit from those skills. I can also see potential difficulties in later landing and keeping a job if his social abilities don't improve. Don't get me wrong, I believe (and have reinforced to him) that I don't have a problem with his social preferences, *but* I think it's incredibly important for him to be able to understand and function in a world that expects certain social behaviors. It's like acting. It doesn't change who he is. It just helps me play another role when necessary, so he can benefit.

I would have a problem with any of my kids playing video games nonstop. We all need balance and want to be functional in life. But free time belongs to my children, and they choose how they spend it (with some limitations placed on screen time, for their ages). My AS son chooses to play with legos, play on Minecraft, write stories, play with stuffed animals, whatever. But when it's school/work time, it's time to work on all skills that will benefit him in the future. I do not want him dependent on me when he is an adult. He's very smart and quite capable, so he shouldn't be dependent on me for more than a typical adult child needs his mom, provided I help him gain skills he needs.