I am so sick of this. There are some people who choose publicise their feeling of rage, hate and shock at having given birth to autistic children. On Gonzo's blog I read about one woman's horrible bile-filled blog post about her daughter. This child is 8 years old. Her mum describes her as "recovered from autism" whatever that means. But this girl still causes her mum so much pain because she just isn't how she's supposed to be (link broken deliberately). The mother complains that her daughter isn't into dolls and make up, but prefers to goof about, play computer games or ride a scooter. I mean, how dare the child resist the gender role assigned to her. If she doesn't start with the make up by 8 she'll never know how to apply liquid liner properly.
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.