Devastated - please help!

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Whilst I can sympathise with your situation, I am currently waiting to have my son evaluated and I have been through some of the emotions you have, I do think you've came on this forum a little too full on in many aspects indeed with the greatest of respects you seem to be so emotional about it that it could be misread as trolling. You've been a little less than diplomatic in some of your posts when you consider the audience you are posting to.

I think there are many aspects of going through the realisation you may have a child with a "disorder" and of the biggest ones is actually getting past the emotional aspects of it. Whilst you may rationalise aspects of how you should feel, my child is still my child, the label is only a label..it takes some considerable time to actually get to the stage that you do believe that. I'm getting there but it's took an awful lot of going round and round in circles.

I really hope things go well for you and your family.

Are we to be judged by what we say or do when we're at our limits? No one can be well-behaved under any circumstances. And our world is designed around NTs, to make everything easier for NTs. As a result, it's a daily struggle to cope if you're different, constantly coming across barriers that affect you and no one else.

And if your difference isn't visible, then most people will give you no sympathy or help whatsoever. My best friend has CP and uses a wheelchair, and I'm amazed at how generous people are when she asks for help, just because her disability is visible. Even if I tell someone I'm autistic, many times they still won't expect anything different from what they expect from an NT. And they call me selfish when I break down under the stress of trying to do things that are 10 times harder for me than for anyone else, never realizing how selfish they seem to me for insisting that I have to do all the work to accomodate them while they do nothing for me.



Well, firstly, not all autistics are like that. Especially when given proper help and treated with understanding.

Secondly, I'm 22 and I don't have a job, am not capable of living on my own, and even if I weren't asexual (uninterested in sex) I doubt I could find a boyfriend. But that does not mean my life has no value. I have a family who loves me and likes me. My cat loves me and I love her, and find great joy in cuddling her and hearing her purr. I have fun researching conditions on the Internet and writing stories which I hope to have published someday (I have had short stories published, but not a novel). I volunteer with disabled children and I'm very good at understanding them and helping them.



But if you can't step up? Or if you can only by paying a very high price, such as chronic extreme stress? That's when having high expectations is a problem. It can cause immense damage to a child to push them to do more than they are capable of. My Dad knew a guy (NT, by the way) who committed suicide because nothing he ever did was good enough for his father. This father was well-intentioned, he loved his son dearly and just wanted him to succeed and he was devastated when he realized he'd driven his son to suicide. But good intentions don't guarantee a good outcome.



Maybe he's trying to say sorry? I often can't say it in words, due to anxiety, so I say it in actions.

Or maybe he's trying to reassure himself that you still love him - I doubt you're perfect at hiding your disdain for him at all times.



BS.

Acting badly does not mean a child feels secure in love. In fact, kids who feel unloved are usually very badly behaved kids. It's common for insecure kids to 'test' their parents' love, doing outrageous things to ask 'will you still love me if I do this?' Or else to decide that if the parent doesn't care about them, they shouldn't care about the parent. Or just freak out because they're under so much stress that any minor thing puts them over their limit.

Read the attachment research, and you'll see that the best-behaved kids tend to be securely attached kids. They feel safe and are free from anxiety, which means they have the ability to cope with what life throws at them. They don't feel the need to test or punish their parents. Sure, they're not perfectly behaved (which can be a sign of problems) but they're not terrors either.

And I shudder to imagine how much self-hatred it would take for me to look at one of my parents writing the kind of stuff you've written here and agree with it. Even about myself in the past - past me is still me.

If you truly care about your son and want the best for him, get yourself some help, right away. Your view of him is going to cause serious emotional harm, if it hasn't already. Honestly, I'm really scared for both your son and your daughter (kids are affected by witnessing conflict almost as much as being part of it). I know you're not into counseling, but please, please try it. You don't seem to be handling this on your own.

I don't see the relevance. I can only hope that I will be able to show my son what I wrote about him when he was a little one, and in retrospective, he will smile and understand with the wisdom and perspective he will hopefully have accumulated by that time. This is what a normal adult would do. If he will not be in that position and would get so insulted because of reading about his selfishness and tantrums as a child, then I will have lost him long time ago.
I trust this will not happen because this is not who I will raise him to be.



I am aware of that.

When my child hit the other child with the car, that was not a tantrum. That was acting out of frustration and being impulsive for not getting what he wanted. He had never hit a child before. He is usually a non-agressive type of child and he is in fact prone to bullying - so I taught him that if a child attacks him he should stand up for himself. He ended up interpreting "not being allowed to have the car" as attack. So he attacked back.

That child certainly did not accommodate him and was mean to him: he did not let him have the car; and yes, that caused stress to my son. But then...so what? This is what The Planet will give you all the time:
STRESS. FRUSTRATION. NOT ALLOWING YOU TO HAVE WHAT YOU WANT.

It will happen over and over again and I will not be able, as a mother, to remove those stresses for him every time.
I have certainly taught him how to deal with it, cope with it, respond to it adequately. I have talked to him and explained nicely that just because you want something or like something doesn't mean you will have it or that the other people need to make it happen for you, so you can have whatever you want. I have talked a lot, have mentored, guided, disciplined, shown, demonstrated, given examples involving someone else's shoes, etc. Not sinking.
He is enormously self-driven and he keeps saying "I did X because I liked Y".

Yes, he has meltdowns too. But those are a different story.



I was not aware of that. I was also not aware that on this forum you can only say things that are conventionally approved by the autistic community and that sound socially acceptable in the ears of a well-defined autistic community.
I was not even aware that a specific "autistic"' community exists. Being new to this, I thought this was a forum where various people, with various worldviews, whose lives have been touched by this condition and who want to learn to live on this Planet they were born on (right or wrong) - can come to ask for help, opinions, clarifications, offer details so they can get accurate feedback and understand what the H is going on. Funnily enough, I am starting to get there.

However, it is clear to me now that this is not indeed the place to ask more than conventionally approved questions and be happy with conventionally approved answers. I found Another Planet. The other "wrong one" - exactly as the title implies.
One that seems to be as conventional, rigid, judgmental and narrow-minded as the NT world is accused of being.

By the way - there is no such thing as an NT world. There is only THE WORLD.

The fact that people here seem to have gathered to form a "world of their own" and legitimize the idea that the way they are is perfectly fine and that they do not need to learn how to adapt to the realities of the REAL Planet...it is quite scary and disturbing to me.
I may be wrong. And again, this may be because of cultural difference, and because of what I witnessed in the society I grew up in. If that is the case, I apologize for having stirred muddy waters and will leave the forum - thanking everyone again for the time they took to write.

I will just add here one last point of view, only to clarify where I am coming from and why I have problems accepting all this "we are a different Planet and we're fine the way we are" saga.

I grew up in place where I never knew of ANYBODY, EVER behaving and living their lives in ways that many ASD people are now trying to legitimize as a perfectly acceptable "alternative" lifestyle: no job, no friends, no ability to cooperate or communicate with anyone in real life, no significant other, asexuality, playing computer games or obsessing over some solitary hobby, living in a world far, far away - all while expecting family to accept them and be proud of them EXACTLY for the way they are, no behavioral modifications needed as that would mean trying to be someone they're not.
OK.

No one where I grew up has ever known an adult like that.

Not because autistic children (or children with a,b,c traits - per manual) were not born in my country.
I am sure quite a few were born this way. But the local society did not allow them to develop WITH their grain because they simply did not exist in adulthood. It forced them to develop AGAINST that grain. Please keep in mind that I am not arguing that this society had it right and this is how things should be done. I am just telling you what WAS: and take my word for it, this is how it was.

No one ever knew anybody who had no friend whatsoever, who could not have a job because of not being able to communicate with other people, who lived their lives locked in a room, in complete solitude, obsessing over a hobby (no computers available at the time) and pretending they are super happy just the way they are, being left at their own devices by their families under the guise of "acceptance". NO ONE.

And the reason why no one was like that is because the darn local society would give you so much grief over living your life this way and would apply so much pressure for you to change, that most people of that sort would have ended up with two options and two options only:

1) hang themselves
2) adapt and change to fit the world they were born in: with their grain or against their grain.

They may have only ended up with one close friend, a not-so-glorious job and a spouse who was not necessarily their perfect SOUL MATE; but they learned to live within the constraints of the world.
Somehow. Don't ask me how.

Given that the very few suicides I heard of growing up happened with people who had always had the most NT-like traits possible, it is clear to me that autistic-born people were not taking their own lives by succombing to the pressures of the "mean" local culture. They simply took option no 2.
Yes, AGAINST their grain - which, in time, became normality.

Would they have ended up with a happier life by being allowed to play with frogs in their rooms forever (or insert intense personal and solitary interest of choice) as opposed to having a friend, a spouse and a job - against their grain?
I don't know. Perhaps.

What I am trying to say is that this adaptation to an environment that EXPECTS everyone to fit certain basic molds DID HAPPEN. For better or for worse - but it happened. I saw it with my own eyes.

I am, of course, talking about a traditional, collective society that places strong pressures on the individual and DOES NOT accommodate all sorts of "diversity". Again, rightly or wrongly so.
Definitely not the kind of "diversity" like living in your own little world without what most people consider a FUNDAMENTAL aspect of being alive, aka being able to communicate and connect with a fellow human.
It is no coincidence that such children were allowed to develop at their own devices only in highly individualistic societies - but not in collective, traditional ones.

As for selfishness, real or apparent, neuorologically- or jerkishly-triggered: IT WAS NOT TOLERATED.
It was seen as a terrible character flaw. Period. No one was interested in HOW you acquired that selfishness or that, despite acting like a jerk, deep down you are not one because this is what is written in a book.
You acted selfish - you WERE selfish. And that was not good news.

At this moment I still don't know whether I myself ever had AS or not. If I did, that would still make me an AS because, according to the textbook, AS never goes away just like brown eyes will never turn blue.
I do know for sure that I was on a trajectory, for a long time in my life, that was extremely similar to many AS paths I have read about. I have described that path in a another thread where I was trying to receive feedback as to whether that was AS or not.

I eventually caught on that I was not going to live well in this world by pretending that the way I was living was still a perfectly legitimate lifestyle because it made ME happy. I had moments of intense happiness when I was indulging in that obsession I entertained for over 10 years. But I simply understood that the world was going to give me too much grief if I continued to live in my own little world, without a partner, clumsy in social situations, withdrawn, frustrated by social demands, etc.

I understood the social pressure and realized that my family was not going to "accept me just the way I was".
They would have never kicked me out but they would have never stopped giving me grief about who I was either.
The trick in such societies is that the option of separating yourself from your family for not accepting you just the way you are and just going to live on your own using credit - is not an option. As such, your family will always be there to give you grief.

So I slowly stepped out of my little world and became perfectly functional in the real one.
But then again, that might not have been AS. I will never know.

All this being said, I understood that any further analysis around the obvious conflict between these "two Planets" and my perception of what's REALLY going on - could lead to unnecessary and frustrating exchanges.

I remain grateful for the information I have received on this thread and wish everyone the very best of luck.
Thank you so much again!

Then I'd say you probably never visited what might have been known as a Mental Asylum. Thats where Autistic people here were put (I know of a few first hand stories about that, including at least one of my relatives) who couldn't cope. Perhaps thats why you never saw them? Often they were just hidden away like that, no-one wanted to know and it was thought of as very shameful.

I can't speak for other parts of the world but where I am from, no one was put in an Insane Asylum because they did not have a job, spouse or friend. They were just strongly pressured to conform and possibly gossiped about.
Children who never talked and also had mental retardation probably were placed in institutions very early on.
I can understand accommodating the atypicality of a child born that way: not verbal + mental retardation means he cannot function in this world at all. End of story.

However...a person like the author of the "Congratulations: Your Child is Strange"? Seriously?
That person is clearly an extremely intelligent individual, so capable of being right here, with everyone else on the darn Planet.
But at the age of 23 (still so young) he is basically advising that the NT-s should just stop trying to change ANYTHING about "weird people" like him. I continue to believe that a person like that, with such amazing intellectual gifts, would be better off with everybody on the Planet, then away from it - playing computer games in his little room.

I really don't want to continue posting on this thread anymore, but then I keep adding replies, feeling like I am finally able to get my point across. No one will convince anyone else of anything. We are all affected by our own unique life experiences, geographies, ancestor histories, collective psyche - you name it.

Best to everyone again.

Last edited by goodolddays on 10 Jul 2011, 5:24 am, edited 1 time in total.

I don't think that's how it works and I'm not just talking about ASD's. You can't just FORCE people with different mental conditions (like bipolar) to be "normal." Don't you personally feel less pressure on your life now that you are not living in your old country?

No wonder you think you can force your son to be "normal", considering your background. What would you do if your son someday tells you he's gay, or something else you consider socially unacceptable?

As for the car thing with the other kid, why are you trying to pathologize everything he does? Kids fight over toys all the time.

And if they didn't have a job, spouse or friend then they just merrily went along content, striving to do better, and never having what used to be called 'a breakdown'?
People here used to have 'breakdowns'. Essentially thats where someone is completely unable to cope anymore and the community and church could no longer help them.
When people have pressure applied they sometimes respond as you say, but just as often they buckle and break. My Grandmother died in a mental asylum, my aunt too, their behaviour as described by others is obvious. I am sure they could have benefitted from the understanding and acceptance that we now have. Ditto my child he would have been unhappily institutionalised, so lucky for him he didn't grow up where you came from - right?

And lucky for your son, you are finding out about his ASD now so you can be best equipped to help him learn and grow - right?

Unless you propose to force him to 'conform' - and as I've asked before how is that theory working out for you so far?
I wish you and your son well, really I do.

You seem to say 'end of story' to underline where your patently wrong. You have much to learn young Paduan.

Imagine a blind child, living with a parent who likes to rearrange furniture for fun. The child keeps bumping into things, getting hurt, and crying. Should the parent just punish the child for crying and expect the child to figure it out? Or should they accomodate the disability by not rearranging the furniture.

It may not be something visible and clear like blindness, but AS is a disability. There are some things your son is not capable of doing that most kids are.

AS kids struggle with recognizing emotions. When they look at a person, they can't tell how that person is feeling. With time and training, like a deaf child lipreading, they can be taught to recognize emotions, but it will always take a conscious effort rather than being automatic. And in the meantime, if you want them to know how you are feeling and respond to it, you need to tell them verbally. In addition, because they can't read emotions, they don't know how their behavior affects others. They don't realize 'if I do X, it'll hurt the person's feelings'.

AS kids also process many sensations differently. Some sensations are amplified, others are less intense. I recommend you read The Out of Sync Child for more information about how autism spectrum conditions affect the senses. For example, for me, my hearing is sharper. This means that any loud noise sounds louder to me. The fire alarm feels like it's tearing through my head, and I can't think properly for hours afterwards. Even crowds seem bigger and noisier to me, like the worst crowded stores before Christmas. My sense of touch is also sharper, and certain clothes feel like I'm wearing sandpaper.

Lastly, AS typically causes a condition called executive dysfunction. Basically, there are a collection of functions that regulate your behavior, keeping you from acting on impulse, monitoring how much time is passing so you can stop at a certain time, shifting you from one mindset to other - AS kids typically have one or more of these functions broken in them. So they may not be able to shift gears easily, and need a lot of advance warning and preparation. They may have no sense of time, so they can't tell if they've been doing an activity for fifteen minutes or two hours. They may find themselves often doing whatever comes to mind, and it's very hard for them to stop and think before acting.

You may want to check out a book called The Explosive Child. It talks about a method to deal with kids whose disabilities cause them to have meltdowns, without tolerating the behavior or ignoring their disability. Basically, you take everything they do that you don't like and put it into three categories: stuff you're willing to deal with a meltdown over (which should only be safety issues such as running out in front of cars or hurting another child), stuff you want dealt with but don't want a meltdown, and stuff you're willing to let go.

Then he focuses on the middle category, and describes a way of dealing with it. Basically, you sit down and negotiate with the kid, using the following three steps: first the child explains why he wants to do the behavior, then you explain why you have a problem with the behavior, and then you and the child figure out a compromise that meets both desires. Be aware that many kids don't know why they do certain behaviors, so you'll need to present guesses and ask if they're right. For example, maybe your son's meltdown over clothes that you described, could've been that he was sensitive to a certain texture of clothes or to the tags or something, and he didn't know how to say that. Also, they say that as much as possible, you should do this negotiation before a meltdown occurs - take predictable meltdowns and discuss them, or discuss yesterday's meltdown or something, but at the time of the meltdown the kid isn't capable of reasoning clearly.

FYI - Tracker is the author in case you didn't pick that up.

Goodolddays it's still very interesting to hear what you have to say, to hear your point of view, even if you feel you can't win everyone over to being convinced by it. It doesnt matter. Don't feel the only thing to do is to leave the site and never return just because you got a bit of flack. You are obviously an intelligent articulate person who wants the best for her children, just as we all do. Hey it would be pretty boring if we all agreed with one another continually. I was kind of enjoying that heated discussion , even though I didn't contribute much myself. I'm curious to know what country you come from originally?

Dear Goodolddays,

Are you planning to stick around the forums for the next few days?

I ask because I have a response prepared for you in my head, but it is going to be a long one, and with my schedule I may not be able to post it till Wednesday. I would appreciate if you stick around till then so you can read it.

I didn't leave the forum. I stayed because I am still trying to learn about some hands-on techniques that might help with some behavioral problems. I just didn't want to offend any more people with the details of my situation and with the way things look from where I stand - on this thread. I have had a similar experience on another forum where I asked yay/nay on disclosing the dx, given the data for my son's specific profile...and I ended up getting lynched for explaining what lies beneath my reservation to disclose.

Here I felt that I had to remove "the filters" and present all the relevant data, including background and personal experience growing up - to make full sense and get accurate feedback.
What I got instead was a collective puritanical reaction to my "incorrect" feelings about the "situation".

I learned a lot - not so much technical aspects I did not know about AS before (I DID GET the technical description of this syndrome by now), but rather about how people tend to react to these "invisible disability" issues nowadays, how these forms of disability have become more visible in society yet far from visible enough, the trip from moralization to medicalization, the controversies around trying to affect change in behavior vs. accepting behavior exactly AS IS, etc.

All this is extremely fascinating but also daunting and frustrating when you have lived your life cross-culturally and you're also affected by the situation, personally.

People seem to have a hard time distinguishing between "loving" and "liking". I thought that if I do, then many people would too. I LOVE my son more than I can say in words but I don't LIKE many of the things he does. If I didn't, I would have never felt as secure to call the spade a spade when it comes to his actual behavior.
Love the person, don't like the behavior. I know some people think that the person COMES WITH the behavior, but I
I am certainly having a hard time seeing things this way.

Of course, here I focused mainly on his bad moments because it is the bad moments I am having trouble with.
He does have his good moments though. When we talk at night, before I put him to bed - he is the sweetest and often most receptive thing ever; and weirdly enough, I continue to feel more connected to him in those intimate moments than I ever felt with my adorable NT daughter. He is also quite intense (which I kind of like when he has it "together" ), my NT daughter is not so much.
Just the weirdest thing when you think he has moments during the day when he pushes me to an edge best left un-described. Obviously so.

Last edited by goodolddays on 10 Jul 2011, 4:35 pm, edited 2 times in total.

Oh, I will. In the meantime, I am finishing reading your book. Beautiful writing, by the way.
I would have "killed" for this elegant way of writing in grad school. Instead, I was still stuck in the convoluted and flowery style typical of my mother tongue.

goodolddays
What I think you have failed to absorb through all of this is that many people here REALLY understand the feelings you have expressed. Many of us have expressed the difficulty and pain we felt when we discovered our child's diagnosis. We also have listened to the other's here that came before us and have gone through the same experience. You have spent so much time here "responding" to the comments that have been made that it leaves me wondering if you actually internalized ANY of the excellent advice that you have been given. Your child is different, he is not ret*d. Yes he is most likely behind his age peers right now in developing emotionally and socially. You need to CHANGE your expectations for him not LOWER those expectations. There is a HUGE difference. If a child with ASD is overly-sensitive to loud noises and is overwhelmed in crowded places, you don't expect them to have fun at a parade or a carnival. That is not LOWERING your expectations, it is just changing them.

I hope you will spend at least half as much time seriously considering some of the posts people have taken the time to write as you have expounding upon the significance of your "cross-cultural" upbringing. Your son's well-being is up to you. You can continue to stick your head in the sand and insist that if you treat him any differently than you would treat an NT child is just giving in to his demands then he is going to end up hating you. Ask many of the adult members here who's parents refused to recognize that they were different and you will find that many of them have terrible relationships with their parents if they have any relationship at all. You need to recognize that you truly are in denial. You are so in denial that you are in denial about being in denial. Get help.

Not expecting a child to enjoy a noisy carnival is not the same thing as not expecting them to learn basic rules of social interaction. Or finish school. Or hold down a job.

Carnivals or other noisy situations can be avoided without any repercussions. People have a funny way of not being as easily "avoidable". My point is really that simple: you need to learn now to deal with people. Not "adore" people or seek social/large group situations. But "deal" with them - AS or NOT.
I will never remove this expectation for my child, regardless of who is saying what. That would mean disabling him even more than he is already disabled by nature.

Finally, yes - I did read all posts and have processed all the advice. What makes you think I didn't?
Not agreeing with every line?