Again the parents are seen as victims.

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Pretty furious.

The problem is not the spectrum, the problem is a severe lack of infrastructure, where NTs have an egregious amount of support by comparison. Except we've been screaming this for decades now.

One parent has her warbling posted up on that damn huffington post for the world to see, they actually pick it up and run it and there's actual discussion on it, yet instead of exposing on the problems that AS people have to face, instead she paints herself as the victim.... No, we're the ones that are disenfranchised!

Should have used do not link so they don't get their bux.

Just because parents have a place to write about what they are going through as parents doesn't mean that they don't write about their children and discuss them, their behavior, their therapies, their likes and dislikes, whats going good, whats going bad, what they did new and what they are having trouble with somewhere else on the internet. More than likely that place is private so they aren't publicly posting information about their child with just anybody who wants to read about him.

Just because they are parents doesn't mean that their need to vent, talk, whine, rant, or just b***h about how unfair and tiring it can be, is invalid. I whined an enormous amount of time when my kids were little and they were all regular NT kids I thought (and the jury is still out about my youngest son - I think he's got very mild AS, I know he's had bad ADHD and he's been deaf in one ear from birth). I was home with one kid in grammar school and then another baby and another and another, the last three 18 months apart, so I had three in diapers at once, and they only had me, all day, every day. I thought I was going to go absolutely insane. I would literally just cry out of sheer exhaustion and the fact that there was no break in sight from every single day being the same thing, over and over, and over with no time for me really.

Oh, I had help. Not paid help, but my husband helped me a lot and my mother would take a kid or two for the weekend every few weeks, and I got to sleep in one weekend day while my husband got the next, and when I just couldn't take it anymore, I would find a daycare that would take the little ones two days a week, or sometimes three, and find the money somehow just to get some time where I wasn't constantly on call and could relax.

If I went through all that with four basically NT seeming kids, who were actually pretty good kids and minded fairly well and weren't hellions or brats, and who were healthy and played with each other and got along with one another and I could focus on my housework and some other things I needed to do while they were busy, then just imagine what a parent goes through whose child needs every moment of their time, every day, and availability and many times their presence most of the night too. It's not just parents of autistic kids, it's parents of kids who may have something else besides autism that makes them need someone right there all the time to either help them function or learn to do things. It's also parents of kids recovering from accidents and illnesses who are bowled over by the sheer amount of neediness of their child and the complete lack of time for themselves, and they know it's only temporary during the kids recovery but it's still almost impossible to handle. I've known parents who went through those kinds of things, and those with kids who had long term intense needs. It's not easy and the parent is never just saying "oh poor me, forget about what the kid feels, be sorry for me". Whats going on in those blogs and posts and articles is that the parents are using a few minutes of their down time to just simply get something out there about themselves. Everything they do, every plan they make, every decision, every thought, everything, is about their kid. Their minds are on their child all the time and wondering not only if what they are doing is helping, but wondering if there is something more they could and should be doing, and if so where do they find out about it, how to pay for it, where to get the skills, etc. Do you really begrudge them a few minutes of posting to other parents as a message in a bottle type missive that just talks about how they are coping?

Even as a parent of just regular kids, I felt that my entire identity and self was caught up in them. Everything was about them unless I was able to make special plans and then it was hard to even talk about something that didn't concern them. It's just that way when you are a parent of a young kid, no matter what your childs abilities or disabilities etc, are. My four kids were happy and healthy and thriving and giving me good feedback day after day, but no matter how much I did, I always felt that there was something more I should be doing. I always thought I could be doing something to be a better mother, even though my kids were content as could be. Imagine the constant drive to find something else, something better, the one thing that would break through or make things better for your kid when no matter what you are doing, and no matter that you are pending every waking moment doing it or planning it or working or juggling to pay for it, you aren't getting very much in the way of confirmation that you are doing all you should and could do. Of course the professionals tell you that you are doing everything you can do, but thats not the feedback you want. You want to see your child learning and growing and responding or whatever that parents particular goal she's working on with her kid is, and she's just not getting very much of that from him because he can't give it to her and he still needs all her time, attention, effort and it's going to keep on for years if not decades, and she doesn't know what will help or when the light at the eend of the tunnel will be there so she can see that what they are doing is making a difference for him. She may not ever see it, or it could be years. Nobody knows. I knew that in x amount of years my kids would be in school, or this time next year they would all be out of diapers, or I could wean the baby in a few more months, and I knew the milestones to watch for and they all came pretty much on time except for my son's speech, but I got the good feedback from my kids, and the confirmation that they were thriving and I was doing something right and many of these parents don't get anything like that. They keep going on and on, not knowing if it's going to help their child or not, and probably wondering if they should be doing something else instead that might help him.

Any child is just a vacume of need. It's a big bottomless pit of selfishness for quite a while, and although you get the cuddles and such that are the best thing ever to a parent, you feel like your entire self is being sucked into taking care of this one little baby and it feels so very wrong to be feeling that way. It feels selfish to want somebody to ask how you are and if you want something special or if you would like to do this or see that movie or read this book instead of always being focused on the kids. It feels selfish to want someone to say "You are doing a great job. Let me give you a hand with it and you rest for a few." It feels childish and silly to want to say to somebody else out there, anybody out there "I haven't slept through the night in two weeks and haven't been able to put the baby down to even cook a meal because he's got colic and now the toddler has an ear infection and I can't even get both of them quiet and content long enough to go take a bath" or even "I can't even go to the bathroom alone, I'm going freaking nuts!" and to just vent about it, even though you wouldn't trade it for anything, but it's nice to get it out. Tell the truth. It's a hard job and it's ok to talk about how it sometimes sucks. That's all these parents are doing. They are posting for anybody who cares to read it. They may not be able to find time to get out of the house and meet somebody for coffee, or even be able to orchestrate everything so they can run to the grocery store for a can of coffee to make at home when they run out, and they spend most of their time concentrating on their child, doing for their child, willingly sacrificing for their child.

It doesn't invalidate their love and their commitment to just want to get some of the very real hardships of it off their chests. Every parent has those times, and the more your kid needs you and the more you focus all your time on him and lose sight of you, the more you need to just stick your head out the window and yell to somebody else out there who isn't sitting there with you trying to accomplish whatever you and your child are working on right that moment so that not only do you find a connection with somebody else, no matter how tenuous or casual a connection it is, but you need to make sure you know that you are still heard and remembered in that world of grown ups and freedom that you used to inhabit, and knowing that it's still there and that you aren't forgotten about and somebody out there in that world has been in your situation and gotten through it and is now on the other side of it, can make you feel better. Hoping that somebody like that will read your blog or post or whatever it is that you write and put out there and hoping you get a word of encouragement back is sometimes enough, and when you hear from enough people "it does get better, they do grow up, you do have time again" you start to believe it, and one day you will be on the other side and you can read the posts about what life is like for the parents who are in the middle of that rushing river that feels like it's drowning you or about to pull you under and you can tell them "Yes, I understand. You are doing what you need to. Keep it up. It will get better" and maybe, just maybe, the encouragement is enough to get them over the hump on the low days and keep on keeping on, and knowing that their words are being read by somebody out there, and even though they don't see anybody or do anything with others, or really engage in anything that isn't child related, they know they have found a way to make sure they can still speak as individuals, about their own feelings and be understood by someone, and maybe just knowing that someone out there is thinking of them even for ten minutes when checking their blog, it's enough for right then.

Do you really, really, honestly, truly, actually begrudge anyone the chance to just have their feelings heard?

....
.... Yes.

The things she's talking about, they're exclusively AS hardships. She essentially hijacked them, and painted them as parental hardships.

Furthermore,

This one person that no one has heard of, writes this little thing, and it ends up as a big story on huffington post.
Compare that to, AS people screaming about these problems for decades, and people are still blissfully ignorant.

Do you see why that's infuriating?

Sounds like jealousy to me. How is she hurting her kid by blogging and having people read it? These parents aren't trying to say how terrible it is to be in their shoes, they are simply telling the truth about what their life is like and how they handle it. That doesn't mean every parent has the same experience, nor does it paint autistic kids as burdens on parents or as little monsters who victimize their parents and force them into lifelong slavery.

You want a hint? Almost every parent feels that the job is too much for them at one time or other, and thats just with the average amount of work and responsibility and worry. The more you add to it, whether by increasing the number of kids or increasing the amount of time that one or more child requires from the parent, then the more pressure that parent feels. You don't think she has a right to feel the pressure of her situation, or do you just not thinks she has the right to have people read what she wrote because you, nor another aspie, wrote it?

You want to get your side out there? Start a blog. Polish up your writing skills. Start blogging every day and post interesting things that encourage people to start following your blog. Then if your topics are pertinent and your writing is good and your style is likable and your posts are entertaining or at least thought provoking, then you too will get picked up and talked about on Huffington.

You have the same chance she has. What are you complaining about then, exactly?

Get to writing and don't get bitter over the fact that someone else's stuff is read. This is her 15 minutes of fame, and if you want yours then you need to do something to get it. It's not just handed to you because you have an opinion. It's honestly the literary equivalent of serving a whole, cooked lobster. It might be really great and mouthwatering, but if you don't serve it up right then nobody will take a bite to find out. With lobsters as with op-ed style pieces, presentation is everything, and it's a messy undertaking at times so be sure not to hit yourself or anybody else with the drippings.

Could seeing your child going through hardship not be a hardship in itself? Especially if you want to help the child but can't.

Also, perhaps it's the "screaming" that's the issue. You tend to find people that speak politely and eloquently get their voices heard more frequently than those that just shout phrases aloud, regardless of the validity of their point...

I guess my issue is that this was posted on HP, not a private blog. Her attitude seems cold to me and her blog is completely one sided. The HP is furthering the marginalization of autistic children by publishing this blogpost. It is infuriating that she objectifies her child so much that she doesn't see him as anything other than a burden. And that it has gotten such exposure can only be bad for the percption of autistic people in society.

You cannot say with any authority at all how this lady sees her child. I didn't see her child as the burden to her, I saw the problems they both had to deal with due to the autism as the burden. Because the autism puts burdens on someone does in no way mean that the child who has the autism is a burden. Hell, mine puts burdens on me a lot of times, and I dare you to read the Haven or L&D and not see post after post talking about the hardships and burdens that autism has put on these posters.

You could try fancy linguistic gymnastics and say that it isn't autism that puts these burdens on people, it's society and it's because autistic traits aren't accepted as normal. However, if someone is completely unable to interpret what another person means and cant make themselves ask, or cannot bring themselves to carry on a conversation with someone of the opposite sex who they are attracted to, whether thats because they are too shy and afraid of rejection or because they get tongue tied and confused in their own minds, then it's not society that has added these burdens to lives, it's either the autism that's added them by preventing communication in any effective way, or it's the complete lack of mind reading in human adults, which you can't really blame on anything.

I know of no society or rules of etiquette that would require someone to inquire if every other person they come in contact with has complete understanding of the information they just conveyed, and if the person still is unable to answer 'no, I dont understand", then there is nothing society or regular old manners can do that would cause the original speaker to know that he or she needs to explain. As for not being able to talk to someone you are attracted to,, then what is society to do about that? Should everyone be required by the social contract to date everyone who asks them, or should there be a common signal in use that everyone uses when they simply set eyes on each other, that means "I want to go out with you"? How does autism not put burdens on people in those situations?

As for the accusation of being one sided, any opinion piece worth it's ink or pixals is one sided. Thats what an opinion piece is, and thats obviously what her blog is. Her account of how her life goes. Her opinion on it. Just because she's angry with the situation that she most likely feels is unfair does not mean she objectifies her son. Almost every aspie I've ever heard or read has said at one time or another that it's not fair that they have to deal with this. Why is it ok for an aspie to feel they are unfairly treated by the luck of the draw but it's not ok for the mother to feel that her child wasn't treated fairly? Is it because she feels that she has been roped into this unfairly as well? Because to be honest, she has. Just like every parent of every child who has been born with a problem, gotten seriously ill, been in a bad accident, or even died. It effects the child just as much emotionally as it does the mother right now. Over time, as he grows up, it might lessen for her, but right now her baby is seemed to be suffering in her opinion and therefore she suffers. Thats how any decent mother feels. She suffers when her child suffers, because her child is suffering. Also, she knows whats waiting for him down the road and she's worried about that and dreading how things could go so completely pearshaped for him and hoping and praying and everything else that it won't do that. He probably doesn't have that long view of things, because most kids don't, autistic nor NT.

So what if it's on HP? It's a popular blog site. Mormon moms who do every single thing for their families and do it with a song and ribbons and smiles are very popular bloggers, and so are mothers of autistic kids. Mothers of autistic kids are seen by most people as the most dedicated and hardworking mothers ever, and those who haven't had kids yet, or are in their childbearing years do have a fear that they may end up in that situation, every parent worries about the slightest thing being imperfect about their child. Older people who are done with having kids can read these moms and see what their life would have been like if they hadn't been so lucky as to escape the same fate, in their minds. It's like reading about an endurance trial that you were frightened you would be forced to perform, and lots of people do have a half guilty "whistling past the grave yard" feeling of narrow escape when imagining her life an wondering if they would do it as good as her or could they have even done it at all. So, moms of autistic kids blogs are a glimpse into what many parents are terrified of, and its usually with great respect and admiration that people regard these women.

If you want to change the perception of autistic children as being so needy and "burdensome" then maybe you should question why blogs of moms of mildly autistic kids aren''t as popular. It's not that people only want to believe that autism is severe and debilitating, it's more along the lines of the tougher the situation, the stronger the person who comes through it ok. Most people like their heros to go up against harsher things than a handful of quirks and a refusal to wear certain socks, along with intense interest in subjects that bore the life out off the rest of the family. Thats not that different from most people's lives. These moms with the more severely effected kids have the lives that are different. That's what gets readers. Nobody wants to read about something that's almost like home, most people want new, exciting, adventure, or at least a manly struggle against adversity.

Go figure.

Are you saying this about the blogwriter or just in general? Because neither of us can know what kind of parent she is.
Again, my criticism is of this piece of writing in particular. I imagine life is hard for her, but this blog objectifies her son in a way that hurts all autistic people.

In general because while I assume she feels that way, there's never any guarantee. Like my grandmother always said, people are crazy so you never know.

As for how her blog makes autistics look, that interpretation is up to each reader. She may be using her blog to vent her frustrations and it may very well be one of the few things she has that is about her and only her. Of course she could be a harpie who just doesn't really care, but I tend to give people the benefit of the doubt, especially people who are under heavy emotional strain, which you have to agree that she is under.

As I said earlier, if you want to get another view of autism out there, get a group of moms of kids with mild AS to start blogging and then promote their posts.

The internet isn't run by truth, honor, fairness, or anything other than popularity. If her post is the kind of thing people go after, then thats whats out there. Also, have you considered that others may see her post the same way you do and promote it purely for sensationalism and causing conflict? Stirring up the pot is always good for bringing up some kind of meat in the pot, so when there isn't anything else to look at, then cause controversy and sit back and look at it happen. That could or could not be the reason it's there. We have no way of knowing.

At least the internet gods haven't picked Chris Chan as the poster child and face of autism, and you know that could very well happen if it went viral. It wouldn't change anything major, but it might influence the opinions of those who are easily swayed or are very gullible. Nobody has any control over whats popular or gets the views online. It's fickle and it always plays to public opinion, appetite and any tie in interests that can be found. So next week there may be something else about us, or nothing at all.

It's just the internet and anybody who actually forms a firm opinion of a diverse group of people based on a few internet blog posts, videos and rants is probably not going to be someone who is in any position to effect any type of change at all outside their own kitchen. I see it the same as the National Enquirer type tabloids. If one of those published some horror stories about us then I'm sure that more than a handful of uneducated and easily swayed people would eat it up hook, line, and sinker. It still wouldn't have any bearing on us though, because those people are too busy trying to hunt Bigfoot to give a crap about what some autistics are up to.

Yes it absolutely does, that's exactly what people get from the article. The take away people have isn't "Oh, NTs have all this support, while AS people have none." but rather "AS people are a burden on their parents, then probably society."




No, no we don't have the same chances, we don't have the same vocals, that's part of the problem. If it were as simple as "make a blog" we would already have our voices heard by now. There are many Aspergians that do have blogs, very good blogs, but instead this nonsense gets picked up. By comparison, this one Mum has a megaphone, while we all have a gag.

It's another side effect of the vile stigmas. When someone holds a strange idea about you, it's nigh on impossible to shake it. That's why AS people are thoroughly ignored; NTs think there's just something wrong with them, and your words carry no weight because of the stigma itself, so you can't even rebuke to rebut the nonsense.




No it's nothing like lobster. It's like middle eastern food, all of it. People look at all the strange names, and already have all these misconceptions about the food, like "their meat sits out for a long time" they don't want to even consider it, and go with something like spaghetti bolognese. Tell them that it's not bad, they're not going to believe it, they automatically think the source is untrustworthy, or doesn't understand "real food".




It is a metaphor.
You fail at understanding.




The communication breakdown you're talking about, it is because of a two way cause, and it's very easy to see it as "the other person has the problem". It's very easy for me to think when it happens, that they (NTs) don't have the capacity to understand, when they might very well have the capacity.

Then there's the perception of AS people that NTs have, which is another problem entirely. I can tell you right now that the ostracism doesn't come about because of "shyness".




In a nutshell this is the crux of it, she's espousing opinions that are being taken as facts. And the take away that people get from it, are handfuls of stigmas and misconceptions that then become heavily ingrained, and it becomes very problematic for us. It makes it harder for us to survive, and is incredibly counter productive for AS people, when it's ALREADY very difficult to combat and dispel these stigmas.




And that is the inaccurate perception we've been fighting to dispel. It's not a case of "born with a problem", it is the inadequacies of society that are the cause. The world we live in, it is, hand crafted to suit NTs, in every way shape and form. The problem is simply not the person.

My AS was certainly a huge problem for me when I was young, even though I didn't know it was there. I had a problem understanding the accepted standards of speech and behavior and functioning in even simple group situations. That wasn't other people's fault, and while it wasn't my fault it was my problem to learn to deal with however I could find to do so. Society can't change to fit and accommodate and facilitate everyone's differences simply because they have AS. Individuals accommodate, change, make compromises, explain things, etc, but society as a whole doesn't change to cater to us, we learn to fit into it. People without AS or other disabilities often have troubles as well, but society doesn't change itself to fit their needs either. If I had a blind friend or family member, I would of course make the changes in my home so he could function there with ease, and I would ask him what I needed to know about his needs and how exactly he wanted me to help him. I would do the same for a friend in a wheelchair, deaf, on crutches, Auburn fan, whatever. That would be my choice to do those things and there would also be equal access in public buildings and such, but I wouldn't ever expect every private business owner, let alone every member of society to make those same accommodations and learn sign language, braile, etc, simply because there are people in the world who need it.

Since you seem to think society should change for you, what specific changes would you propose? Also, what are you willing to change about yourself to fit into society?

God, I hope this sends without eating it all up. Fingers crossed now!

I think you just won the award for most incomprehensible string of quotes!

That is the most impressive use of the quote feature I've ever seen!

From what I can gather from what you are talking about, I agree with you OOM. It always alarms me a little that so few people here understand that a kid's Autism happens to their parents also. They have a right to their feelings about how their lives are being affected. I understand why some of them want cures. Then you see some like Ezra's parents who seem to be really cool parents raising a cool kid, but not all parents can be that way. It's sad all around, but I get it.

I agree with everything OOM wrote.

Okay, bluntly, my concern is that people will be more inclined to abort babies with autism (the technology to identify the gene will be available within the next decade, I'm sure.)
They will read blogposts like this and they will remember. And when a woman a few years down the road finds out she is pregnant with an autistic baby, she wont want to have it.
I don't deny that any parents job is hard. My concern with this post is the objectification of her son, as if he is not a person, but rather the thing keeping her from having the life she wants.