Do you think most parents don't really want to know what...

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it's like to grow up with ASD? I was on a board where I got banned for saying that once you are ASD, you always are and that even those who learn to "pass" tend to get very tired out doing it and need to rest, and are still not NT. That was the gist of it. I always think that parents of kids with ASD really don't want to hear what it's like. They want to think their kids will be NT--great job, spouse, kids, no need for any supports after high school or college, etc. I'm often hesitant to give advice these days because the parents have so far seemed to be unfriendly to adult aspies/ASDers on parent sites, even though I have a spectrum child. Since I basically post facts, void of emotion, that can come off cold too, I think. People told me to "cushion" my posts, but I'd be terrible at that if I tried, and I'm not really sure what cushioning means. People really jumped on me for stating that it isn't horrible to be ASD (one parent said it was worse than cancer because at least with cancer you die) and that you can't force an ASD c hild to be what he's not and that it should be accepted. Then I had parents cyber-yelling that I was in favor of letting it go. I didn't mean the children should get no help. I just meant the parents needed to accept the child, and his differences. I'm monologuing here, and I'll quit now Whiney post anyways!

I have left many boards for the same reason. I am the mother of a child with an AS dx. I also happen to be married to a man recently dx'd with AS. (although I figured out he had AS about the same time I figured out my son did). We also have a daughter who is uber-NT. I'm NT, but I'm pretty socially inept, and suffer from a lot of social anxieties, which is probably why DH and I have gotten on so well all along.

I don't care to be on the "curebie" boards - I love my son and just want to help him in overcoming the hurdles that make his life more difficult - not make him into a whole different person. I also lay awake nights wondering what to do to make sure he has a "fallback position" when his father and I are gone.

I like to think - and I'm very nearly certain - there are very many other parents out there just like me. I've run into them - here especially.

I've been lucky to find people here - adults with ASD's as well as parents of children who have BTDT and feel the way I do - who are willing to share their secrets, their pain, and most of all listen when all you can do that day is vent!

I'm down to 2 sites, coming here for the parent's site as there aren't as many parents on the other site I'm on. I've dropped the rest because the stress of being told I don't know what it's like because I'm NT (no kidding) or that I'm a bad parent when I make mistakes (not buying into that one) or that I flat out should not be there because I'm NT (see ya', your loss) isn't worth the effort.

i left another board because i was told that i didn't know or care what aspies really go through....of course, ( being literal)~how *could* i possibly know what aspies go through...
i'm NT ...at any rate.....i think most parents would like to believe that behaviors diminish over time...and in some cases the behaviors do diminish. the bottom line for us is that we must accept who our son is at this moment in time...and many other moments , too ! ~sure i'd like to see him succeed to his fullest potential. i'd like to see him be a lawyer because he sure is GREAT at arguing a point ( i'm being serious here, he really is quite eloquent)....i'd settle, though, for him being able to hold down a job that has meaning for him.

Clues at the scene of the crime: One parent says that at least with cancer you die, as if ASD is worse than death. Another has a BIG problem with just "letting it go" as if the child's life should go nowhere until he is "cured" or "taken care of." They want people to "cushion" their posts, I guess with fluff. It is a big thing for some parents that the alleged bad behaviors "diminish with time." Funny thing that a lot of people don't want to admit is that when they focus on those behaviors, they seem to be everywhere. Even if it was five years ago that an Aspie child accidentally spit food on another child's plate when she laughed at something, and never done anything like that again, she's still likely to do it again and the grandparent who doesn't like her is ready to pounce on the slightest thing that looks like it, old eagle-eyed bat that she is. She thinks that contrived suspicion is clear vision.

Plus, somehow an Aspie who is really great at arguing a point is still wrong, I suppose because all human knowledge is already cut, dried, and set in stone.

Is "Aspie" someone's word for "the condemned"? A person or even a dog behaves differently if he is treated like he doesn't count, his opinions mean nothing, what he does is the "behavior" of someone who is always suspect, his life is only valid if a controlling person says it is, and he can just be flushed away if he makes a mistake of small import while those who would condemn him are far more erratic and even criminal than he is.

Aspie94, I would be really curious to know what site you were on were somebody compared AS to cancer. Man, that is just crazy.

I discovered this site a few months ago, and I'm thrilled to find out exactly what AS is like for my two sons. I think that 'not knowing" what my sons are thinking or feeling has been the worst part of their AS for me, personally. Reading posts on this site make me have a glimpse into what my sons go through, feel, experience. It helps me to be more patient with their sensitivies to noise, and their unusual social abilities (or inabilities -- it depends on your outlook).

I want to hear more from people like you -- I want to hear the blatant truth. I especially needed to hear things like you have written about in your post -- that you can fake being NT when you mature, but that it's exhausting and that sometimes you need a rest. I'm seeing this already with my 10 year old. He tries to do his best at school, socially and academically, and he does a pretty good job with both, really. But he's EXHAUSTED at the end of the day. I need to understand how much to push him, and when to just leave him be so he can relax and unwind. People coming out and telling us parents the truth is what we need.

I just took my son to his social skills class. There's about six boys, all in middle school, who've been together for a year or so. They get along so well, and they are FUNNY! They are CREATIVE! I don't want any of them to change. Yeah, I want them to be able to maneuver the NT world, but I definitely don't want them to change. Life would be so boring without them.

Changing into an NT is very different from learning to cope in the NT world. I have come to the point where I can pass as an NT most of the time, though it takes a lot of energy because Iam being something that I am naturally not. It is almost as if I am acting in some sort of drama production.

Oftentimes, through intervention and training, aspie behaviours do diminish over time, but this should not be expected for everyone. For people with severe AS, even if their behaviour does become more NT over the course of time, many of these people will still need lifelong assistance. Even people with mild AS (like me) need assistance in some things that NTs take for granted.

AS is a different mindset and a different way of thinking altogether. One cannot force a Mac computer to act in the same way a PC would, yet there are similarities between these two operating systems and ways to run the same program on both. Socializing for aspies is different than socializing for NTs, but this does not mean that aspies cannot socialize at all. It simply means that they will do so in a different manner.

Schleppenheimer- I'm glad you are able to get a glimpse into an aspie mind.

Namiko pretty much nailed it. Some can learn to "pass" but it's a stress. When I used to go for holidays at my MIL's, I'd be so stressed from all the people, the noise, and my biggest fear of all SMALL TALK that I'd stick a book in my purse and go into the bathroom to read, sometimes for half the time I had to stay there. Nobody missed me and it was a good place to destress, but nothing felt better than going home. Although I've married (twice--first hub didn't get me and was quite abusive) I don't think marriage is easy for Aspies and many choose not to marry. I married both times because I knew I'd be homeless if I tried to live on my own, and my parents just thought I was "lazy." I've also learned to make eye contact, but it really gives me the creeps and sometimes I can't maintain it. All in all, I'm confused a lot of the time, and very happy when I'm back to my safe haven (home) with my computer and my writing. Some Aspies want to be social and hang with NTs, but that's not me. I'm drawn to oddballs like myself and even need a break from my very closest friends. I'm not NT, although I can fake it. Inside, I don't feel it, and I have a lot of trouble with things other people find easy. I really can't hold a job, for example, as I can't multitask or do anything at all if there is noise in the background. Even the buzz of a fan drives me nuts.

I don't know if I can say the name of the board I was harassed on. One of the posters actually went so far as to post a thread called "I HATE PAM." It was a PDD/Autism discussion board. Apparently, the parents thought only NTs could tell them how it was to be an Aspie. I'm one who doesn't believe anyone who doesn't have it can really know how it feels, just like I can't know what it's like to be NT. Reading and learning about it is a good thing, but it's not the same thing as feeling it. I thought the parents would like a realistic view, but they were very threatened, I think. It's like I had the same cooties their kids did, and they wanted to make sure that their kids got rid of the cooties, even though I never did. They are pretty nasty to those on the Spectrum, even other parents, like me.

It's hard to understand people when they have nothing to understand.

I like your analogy Namiko... and I completely agree with schleppenheimer - the world wouldn't be as wonderful a place for me without my aspie son, but I know it's hard for him to get through each day navigating around a sea of NT's. The sad thing is that many of those unaccepting parents out there are backed up by unaccepting family. My MIL has declared to some other family members of ours that she doesn't believe my son has AS at all. She thinks he's just a brat with parents who don't know how to discipline him. It's not only insulting to us, but incredibly insulting to my son, insulting to the supportive and accepting members of our extended family, insulting to the professionals who evaluated and diagnosed him, insulting to the classroom teacher who this year has bent over backwards to accept him into her class and accommodate his learning style, and insulting to the team of specialists who are working with him on his social skills, emotional management and academics. Total strangers are stepping up not to change my son into an NT but to help him cope in an NT world and maintain his pride and self-esteem, yet my MIL slings disrespect... go figure... All I can say, is that I am so glad WP.com is here. Again, I completely agree with schleppenheimer; it's refreshing to have a place where aspies can speak their mind and we as NT's can gain some understanding in an honest, real way.

Your MIL thinks? I don't think she thinks.

Any child is identified as having difficulties, having a handicap, or even doing something a little bit off, that child seems to lose his right to take offense when mistreated, and so do his parents. What kind of people think like that, that they accept this from themselves?

My parents did a very good job with me, with what they knew, between the late 70s and the early 90s. I love and respect them for it.

I'm not officially diagnosed, but here is how I think.

I'm walking down the isle of a store. A generic woman is coming towards me, opposite direction, same isle.

At some point, Eye contact must be made, or deliberately avoided. I decide to take the cue from her, and prepare to meet her gaze. I now consider that if she does make eye contact, some sort of smile may be required. At that point, i decide on a shape, degree and intensity of smile, keeping in mind that if she does not smile, I am not required to as well.

Right there we have a potential failure of social interaction. I have framed out my response ahead of time, and if she acts in a way that I have not considered... I'll likely be in a youtube video faster than you can say "holy malapropism batman!"

I'm 34, I've got decades of experience with fitting in, and a knack for reading people.. but even I still must plan my reactions.

Thats a lot of OCD in there too, eh?

There's a lot of weird/poor/incompetent and just plain wrong handling out there of all kinds of people with disabilities.

We went out to dinner Saturday night. DS has a head cold, the first he's ever had in his life (he's 12 and *very* healthy). He was dragging, but wanted to go out. At dinner his head was hanging over his plate, but this wasn't a night I was going to be looking for table manners. A man at another table was staring at him (DS has an AS dx but when sick, or tired, or stressed, it really brings the autie traits out in him). I finally went over and asked the guy what his problem was - he asked what was wrong with my son. I told him he had a head cold, which is all he needed to know - although it was clearly not what he was asking. I also informed him if he kept staring at my son I'd be glad to have the police look into his fascination with young boys. End of that problem.

I use a power chair (quite ably) much of the time and I was doing so this same evening. I went to the buffet line to get some salad, and as I was putting food on my plate, some lady came up, took my plate out of my hands putting her hands on the plate I intended to eat off of, and said "here, I'll do that for you". My hands and arms quite obviously (to someone looking at me) work just fine, and my reach was fine. Asking me if I need help is one thing. Yanking my plate away with HER hands, YUCK. I told her "I hope you enjoy the salad you just bought". UGH. I also get "petted" a lot, as I'm whizzing by people feel the need to rub my shoulder or worse, the top of my head, like I'm a poodle or something. Ugh.

Meanwhile, my mother thinks my son just needs more friends (! !??) and a better father (gotta' love her for thinking of everything) and that I just need to take walks more often to make my feet better (I have extremely severe diabetic nueropathy and often can't even feel my feet).

I take it that not going to the in-law's place is not an option? If it is, then maybe just your husband could go and you and your son could stay at home. Really, your husband should be sticking up for you and your son but I suppose if his mum is so bossy, he might find it very hard and be worried it will only make things worse on you.

"most parents"????????

I haven't replied until now because I don't quite know how to take that. Maybe I'm not in the "most" category but I've worked very hard to completely change my parenting so I can help my child.

As parents we all do our best and we base that on what we learned from our parents. I know my dad is sometimes shocked by what I let my kid "get away with" but considering how far he's come, we're quite proud of him. Then there's my in-laws who view him as "special" and let him get away with everything. It takes days to get him back on track.

I don't want to "cure" him, I just want him to learn, to try and understand that the monkey dance is okay at home, but not during the Cub Scout meeting - things like that.

I don't know about that - the monkey dance would probably liven up the scout meeting no end. Maybe things have changed but when I was in the Brownies, we often had activities where we could dance and sing.

If some people don't like your son dancing and singing, maybe they're the ones with the problem and not him.