But mum has more to say. She is jealous of the parents whose children have cancer! She wanted to punch her cousin in the face for sympathising about another cousin's child going through surgery, because her troubles were bigger; "my [recovered] daughter's MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one."It's not good enough. It can't be right to get off on vitriolic hate speech about your own child like that.
Then this morning at Cat in a Dog's World I read that that Mummy venting had struck again. In a New York Times blog, a woman with a son with Asperger's felt free to tell the world how rotten her life is because of the way her son behaves. She blames all of this on his autism. Does she think this venting will make her life better? Does she think her portrayal of what is titled "the unvarnished reality of autism" will increase understanding of autism and autistic people or will it, as I suspect, make the public ever more fearful of those with an atypical cognitive phenotype? Some of what she describes is society's reaction to her son. I face the scowls when I'm out with Duncan too but that's not his problem but that of the mean ninnies who judge him and me.
She even says, "my son has been doing much better lately" but still tells her tale of woe as if it's all still happening.
I cannot say that her son is not as hard to live with as she says, but there are lots of children who are not autistic who are bloody hard work too. Choosing to become a parent means you have to expect the unexpected. Autism, or any disability, doesn't necessarily have to bring pain and suffering to parents. Different people react in different ways to difficult situations. While I am stressed and upset at times by things I must deal with, some of them related to my son's autism and some not, I don't see my life as a litany of horror. I get over it and keep going as best I can.
What she describes is NOT the unvarnished reality of autism, it's just how she chooses to characterise it.
I also disagree with the implication, by "it's time to stop mincing words" that until now, no one was telling about how horrid autism really is. That's nonsense. There are newspaper articles nearly every week by parents and siblings venting about how terrible the autism is and how it's ruined their lives. We have children's charities depicting autism as a monster. Massive USA autism organisation Autism Speaks released a staged film a few years ago which was all about how haaard life is for women with autistic offspring. Quack cures are featured on health pages, along with pictures of grim faced parents describing that they just had to try the calcium stripping chelation drugs/chemical castration drugs/homoeopathy/shaman therapy/exorcism/chiropractic manipulation because life was too awful before. Loads of books have been published giving insight into the "real and raw" suffering of these parents. How the hell can any of these people claim that they need to speak out and share their pain as if it's not been told of hundreds of times in very public places before?
And aside from how this affects the perception of autism in society, how do you think all this gross negativity affects the people being described? What will my son feel when he's old enough to understand the depth of hate that exists towards people like him? Oh this is something I fear.
Sarah expressed carefully and with compassion, her feelings on the New York Times blog post. Her letter was published. It's wonderful.
But I feel like giving up when I read the comments on what she had to say. Over and over again people are disparaging autistic people in the harshest terms, accusing them of lacking empathy because they express hurt when someone writes about how they destroy normal people's lives.
I still feel shock at the hate filled garbage thrown at Sarah for daring to write. She is damned as not autistic enough to comment, as mentally ill, as complaining over nothing. It's a box ticking exercise in seeing how privileged groups diminish the voices of marginalised people.
Edited to add, Bev has a typically marvelous post up on all this and Sarah has responded to the commenters. I have yet to read it, but I look forward to her annihilation of their ill formed arguments.
Thank you for writing this...I too am sick of this "venting"...though to me it is more like spewing. What is it about the need to be a victim? I just can not comprehend speaking of ones child in such a way..But then again, I realize that this isn't really about their children, but rather themselves.It is so very frustrating and scary isn't it?
ReplyDeleteThank you for this, Sharon. It is so important that reasonable parents speak out alongside self-advocates. This will continue to be framed as a "freedom of expression" issue until enough people of all neurological types make clear that such bigotry is not acceptable. Much appreciated.
ReplyDeleteThanks for this wonderful post, Sharon. Posts like these are very much needed.
ReplyDeleteThanks, Sharon, for posting this.
ReplyDeleteYou capture just how I feel about this.
Perhaps these parents should be told more (when ceaselessly complaining about their rotten lives) the same things my kids were told in Kindergarten-
"You get what you get, and you don't throw a fit!"
I'm sorry that their life isn't all roses, prom queens, and sports heroes. But when you sign up to be a parent, there are no guarantees. I interact with a lot of people from across the social and economic spectrum every day. One thing I learned early on is that most everyone has some problems in their lives. Deal with it.
Joe
That's so crazy, the mum complains about her Asperger's son and when an Asperger's woman responds they say she's not autistic enough?
ReplyDeleteAaaaaaaaaaaaargh!
you all might appreciate what this guy has to say. "One of the greatest sources of unhappiness, in my experience, is the difficulty we have in accepting things as they are....."
ReplyDeleteIt is a sad fact of life that although you need a licence to own a dog; any old fool can have a child! Well done Sharon you've certainly voiced a long held rant of mine!! Keep up the good work.
ReplyDeleteSharon, you obviously don't think anyone can easily be swayed against homeopathy if you resort to bashing it by mentioning it next to exorcism and shaman therapy.
ReplyDelete"You get what you get, and you don't throw a fit!"
"One thing I learned early on is that most everyone has some problems in their lives. Deal with it."
Joe, I couldn't think of an attitude as oppressive, backward, and stolid as yours.
I read both these articles and it shocks me to think that there are parents who think that having a child with relatively "mild" autism is worse than having a child with cancer. Indeed I have met some parents like that and I'm glad to say my mother isn't one of them.
ReplyDeleteAnd they are applauded for writing this? It is an insult to the parents of kids who actually have cancer, it is an insult to parents whose kids have died. And they say that autistic people can't show empathy! Obviously, these parents need a lot of help, and they aren't getting it from the right people.
I get very upset and annoyed when I read comments like those by parents who should know better, just because their children aren't exactly what they wanted.
ReplyDeleteTo compare a child with aspergers to having a child with cancer is frankly a disgrace. How these poor kids must feel having parents who obviously despise them so?
These people need to get a bl**dy backbone, stop the incessant whinging and start supporting their children properly. I am sorry for the language, but I get fed up with always reading about how hard it is, and how they are victims of their children. Of course its hard, but it's usually much harder for the kids, right?
Thanks Sharon for covering this in your usual well researched manner. I really enjoyed reading the response in the NYT and the original blog which I have now linked to on the IAA blog.
ReplyDeleteSome of the most positive parents I know are raising kids with severe and often life threatening disabilities. Some of the worst whiners have kids who would be able to attend mainstream school, work, live independently and do whatever they want, if their parents could just see them that way.
sometimes the balance of the world is a bit askew. Or is it supposed to be that way?
xx
@Kathleen, it can't be about the children can it? Why does anyone think raising any child will not be difficult? I read a comment elsewhere about autism being fatal as so many autistic children drown or die in accidents, as if non-autistic children didn't suffer these tragedies too.
ReplyDelete@Bev, that's kind Bev. Yes, it is made out that freedom of expression trumps everything else. Your post on NT privilege is so important at showing how unequal those wanting to vent vs. those they're venting about are.
@Sarah, oh no, thank you for going out to face such scrutiny from the ill informed but quick to speak crowd.
@Club 166, Hi Joe, I am sure that in your line of work you see really tough problems and yes, no one gets to have an utterly blissful life, especially not if they choose to raise children.
@Gonzo, yep. It's not an uncommon argument either. They don't like it when you address the complaints they make about their offspring and the dreaded autism.
@jypsy, that's a good line.
@AnnB, thanks. You know, I do think that most of the people venting on the net are loving and good parents. Though some have been suckered by the cure industry into performing dangerous and uncomfortable medical procedures on their children who don't need them unlike your son who really needs a great deal of dedicated and expert medical care.
So perhaps not so loving after all?
@lurker, I have no need to bash homoeopathy. It's utter lack of effectiveness and basis on magical thinking damns that system well enough.
I fail to see how Joe's attitude of encouraging people to face their problems instead of staying angry is oppressive.
@3laine, so true. The lack of empathy displayed in the venting articles and by the commenters to Sarah's article was breath taking.
@Nic, indeed. Comparisons to children with cancer are particularly vile.
"I get fed up with always reading about how hard it is, and how they are victims of their children."
Yes! This is what they think, and it is not right. As the adults they have to set the example and not bleat about their hard life so much in public. There's nothing wrong with asking for help and expressing your worries, fears and disappointments to a close friend. But all this extreme negativity in public where their children could read it and where it influences public opinion on autism is damaging and dangerous.
@Hammie, thanks. Sarah's response was excellent.
You're right, it does seem to be that the people with the most difficulties complain less. I mean, I', not against people complaining but it's they way these internet whiners do it that irks.
They ignore the biased power structure and the effect of their extremely harsh words on marginalised people.
Yep, the world is a funny old place.