Image is of a pale blue image with the words "Bloggers who choose to protect the dignity of their children are accused of whitewashing autism or outright lying. In our “pics or it didn’t happen” culture not documenting every detail of our life is considered an act of concealment. "

Cost of “our reality” posts

I’ve read a lot of things lately that proclaimed to be “an honest look at our life with autism” or simply “our reality”. These posts often defend the publishing of compromising or hurtful details about autistic children because of the purported importance of sharing this reality. I want to deconstruct this idea of reality a bit.

Image is of a pale blue image with the words "Bloggers who choose to protect the dignity of their children are accused of whitewashing autism or outright lying. In our “pics or it didn’t happen” culture not documenting every detail of our life is considered an act of concealment. "

Image is of a pale blue image with the words “Bloggers who choose to protect the dignity of their children are accused of whitewashing autism or outright lying. In our “pics or it didn’t happen” culture not documenting every detail of our life is considered an act of concealment. “

With the prominence of social media, almost everyone has some degree of an online presence. Most people attempt to show themselves in a flattering light. Meaning, taking multiple selfies in various lighting/angles to not showcase our wrinkles, under-eye bags or double chins. Cropping out our laundry piles and unwashed dishes. Applying filters and editing photos, and so on, and so on. Don’t we owe it to our public (so to speak) to show our “reality” at all times?

We attempt to show our children, our typical children that is, in the most positive light as well. Perfectly staged photos, cozy moments prove our parenting game is strong. Few parents Instagram pictures of their kids’ tantrums or write updates about their toileting habits. That sort of stuff is glossed over and kept private, as it should be.

But yet, when it comes to autistic or otherwise disabled children, the same standards don’t seem to apply. It seems perfectly appropriate to publicly announce intimate hygiene needs. It seems appropriate, important even to proclaim in a public forum that the child hit their sibling, or made them cry (because we know that typical children never hit each other or make their siblings cry). And it is completely valid to publicly denounce their child’s autism, an integral part of their being, as something to despise or blame for ruining our otherwise flawless existence.

Bloggers who choose to protect the dignity of their children are accused of whitewashing autism or outright lying. In our “pics or it didn’t happen” culture not documenting every detail of our life is considered an act of concealment.

I ask you- do you write every detail of your life down for public consumption- when you are sick, when you are gross, when you have a hair on your chin, when you’re in a foul mood and snap at your kids to leave you alone, when you sulk at your husband for no real reason, or perhaps for a very good reason, when you’re gossiping about your neighbours or take secret glee at someone’s misfortune (oh you know it happens). Do you write a status or blog post about that? Is it dishonest not to?

Perhaps you do, and that is your right and your choice. I’d personally wager you gloss over the uglier parts and instead write about how you made cookies with your kids, then built a snowman and finished the day cuddled in a heap with mugs of steaming cocoa… or something like this.

Why do some parents feel that autistic children/people don’t need or deserve the privacy they take for themselves? Is it because some don’t speak or don’t communicate the way the parents do? Is it because they resent them as part of their lives, a confusing and disappointing part, so their snarky posts are a way to let off some steam? Is it because they are egged on by followers, praising their “honesty” and telling it “like it is”? Is it because they figure the kids don’t understand, don’t care?

However, if autistic people tell those parents- hey we understand perfectly and we do care! They are silenced, mocked and told since they understand they are not like their child and shouldn’t speak out. Often they are then described as “some angry commenters” and again their followers sprinkle their “hear, hear” and jeers.

While parenting autistic children is different than parenting neurotypical children in many ways, there are some ways that are just the same- treat them with the same respect you give your other children. If you wouldn’t post a similar anecdote about your typical child, don’t write it about your autistic child. If you wouldn’t post an unflattering pic of your other child/ren (or yourself), don’t post a picture of your autistic child in a distressed state.

As I’m writing this I keep thinking “well isn’t it obvious?”, but I guess it isn’t so let me just reiterate- autistic children are people, just like you. Treat them as such and you’ll see a marked improvement in your relations, and in relations with other autistic people as well.

5 replies
  1. autismanonblog
    autismanonblog says:

    Well said. One of the main reasons I am anonymous. Yes, right now, this is my life and my story, but it is ultimately his story to tell (if he so chooses) therefore i would never post pictures of him at all, in any state, happy or otherwise.

    Reply
  2. Meliisa
    Meliisa says:

    I completely agree! I see this happen a lot on social media and it bothers me too. I honestly think many people have social media confused with Dear Diary. Some things should be kept private or at least reserved for in person conversations with family and friends, but not shared to the entire world to read about. Everyone deserves respect and privacy; think before posting anything. In 10 years from now, will your child appreciate it? Yes, they absolutely will, if you respected their privacy too.

    Reply
  3. Mel Baggs
    Mel Baggs says:

    Back somewhere around 2002ish (give or take 3 years) I tried and failed to write about this for autistics.org when I first saw a father post graphic photos of his child stripped naked and posed in positions to show as many bruises as possible (purportedly self-inflicted — quite likely might be true, but you never know, given that there was a time in my life when I was bruised pretty much head to toe by physical abuse from institution staff and it was passed off as self-injury because I did bang my head on things and bite myself and rip my hair out at the time, so it was an easy sell even though I wouldn’t have been able to inflict some of those marks) and tried to photograph him during a meltdown. It reminded me of paparazzi. Most gut-wrenching was that along with the photos were very snarky text written as if from the child’s point of view, with statements like “I also love to bite myself!” As someone who could’ve been that kid, even potentially at that time in my adult life, had I been living in different circumstances, it turned my stomach and I couldn’t put into words what was so horrible about it. It’s saddening and infuriating that this stuff needs to be said, but I am glad there are people with the ability to say it: My writing skills lie in narrow areas, are conditional, and I’ve never been able to articulate this the way other people have recently. I just wish that had been a one-off back then or had been somehow kept in check by the entire community of people who ought to know better. Because it’s ridiculous that we’re still having to talk about this 15 years later.

    Reply
  4. Mel Baggs
    Mel Baggs says:

    I should add that the snarky “I also love to bite myself!” type of stuff was written in a tone I have a hard time describing. The clear idea he was trying to get across, though, was this tone of… this is another area where words kind of fail me. One piece of it was that the father honestly sounded like a teenage child irritated that he was having to watch his baby brother, and viewed everything the baby brother did as something done to himself. Children often act like the world revolves around them. So obviously it’s not all that surprising when a kid asked to watch his kid brother takes everything the kid brother does that causes him difficulty, as something inflicted on him and primarily affecting him, even if the kid brother is doing those things for a reason, or far more affected by them than his older brother is, and isn’t always doing them just to be obnoxious and irritating (although having being the kid sibling myself, I know kid siblings — pretty much all of us — develop some older-sibling-irritating qualities consciously or not). But a grown man taking care of a six-year-old who self-injures should know better than to think it’s all an infliction on himself and that he is the main person affected by all of this. It’s an adult’s job to be the adult. Not that all adults are up to that task…

    Another area I see this is, again, staff who work in institutions. I spent a lot of time in both adolescent wards and younger children’s wards (they sometimes threw me in the younger children’s ward even though I was technically too old, just as they threw some kids in the locked adult wards even though they were too young) tied down just behind the nurse’s station, or in other positions where I was able to overhear large quantities of conversation among staff for long periods of time. Or otherwise been in situations where I’ve been assumed to either not know what was being said, or not to matter enough for them to watch their tongue around me.

    And one thing I remember very clearly, is that again, even though they were adult professionals who were supposed to be taking care of children, they treated pretty much every annoying or inconvenient thing we did as if it affected mostly them, and often as if it was deliberately designed to affect them in some way. (They differentiated whether it was actually your fault or not based on how much they liked you. Which could change, in both directions, unpredictably. Especially since, as much as they liked to present a united front around us, they weren’t all the same. But whether they thought you did it specifically to annoy or inconvenience them, or not, they saw it primarily in terms of their own annoyance and inconvenience. They seemed to forget that they went home every day and had some choice over whether to be there, while most of us were there involuntarily, and that the patient’s rights manual mainly served as a checklist of how many rights they could violate at once.)

    So when I was quoting that “I also like to bite myself,” think of it in a context where the tone is the same as an immature teenager watching an even younger child and annoyed that the child cries when he skins his knee or something, so gabbing on the phone to his friends like “He also likes to cry just to give me even more work” and you’ll get the general tone of the entire piece of writing. Between siblings dealing with pretty ordinary sibling stuff, this kind of thing is pretty excusable. But when you’re talking about self-injury, and actually being disabled, and being a young child, and having an adult parent say the same kind of stuff about you… maybe in private to blow off steam, I’d even give them that, but in public, and anywhere it influences their long-term decision-making, and in a place deliberately designed to tell the entire world who their child is? It’s extremely self-centered.

    Reply

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