NB. Just for the sake of exactitude, a truce means a temporary cessation of hostilities. I think we all need it.
Normally one uses surnames for people they haven’t met, but given the appalling way you’ve just behaved and the ignorance you’ve displayed, I don’t have enough respect for you to bother.
Let’s get down to brass tacks.
I am an autistic adult, and I am angry.
I worried when I last posted (Housekeeping post notwithstanding) that I was getting too stuck into righteous anger. That I was becoming one of those people, who finds offense in everything. And I’ve tried to surround myself with joy more often, if only for my mental health. There is a lot of joy in the world.
Also, it’s possible to have an opinion on something without being offended. You can be sad. Scared. Disappointed. Worried. Lately, I’ve been all four, and the straw that broke the camel’s back was the response in the aftermath of an appalling Washington Post article. Only one question came to mind.
Do people really need constant reassurance that autistic people are in fact human beings?
It really, really seems like they do.
(( NB. Please be advised, before anyone gets pissy, that I know that there is a small subset of neurotypicals out there who are not like the people in this post. There are some people and parents who understand. I’ve linked some of them on my blogroll, and they are all amazing people. But it’s a whole lot smaller subset than I’d ever thought, and I haven’t seen many of them lately. ))
NB. I talk about some ignorant and hateful parenting in this post. However, some parents are absolutely wonderful, invaluable parents as well as amazing examples of NT allies. Please refer to my sidebar for links to some of their blogs, marked with a (P).
So. Lately, I’ve been seeing a lot of talk on autism acceptance pages, on parent pages, about tone. About how we’re so angry, about how we have to be nice to people or they won’t listen to us, how “for the good of the movement” we have to engage on the ignorant person’s level.
The thing is, up to a point, those people are right. On a purely individual level, a lot of the time, if you get defensive and upset, people won’t listen to you. They should. But they won’t, because you’re “angry.”
Anger is a scary thing for most neurotypicals, never mind us autistics. We don’t know where it will lead most of the time. We as a society are used to people modulating their emotions, speaking in calm tones, and those who don’t are “loose cannons.” They’re “unstable” or “weird” (read: nonconforming). There’s a place for sadness, or for fear that is socially acceptable – funerals, or scary movies, or late at night as a child when you think there’s monsters under your bed. But anger never seems to be okay with the majority of people.
I was having a discussion on a Think Progress article about vaccine truthers and autism (there is a post coming about the anti-vaxx movement; I just have to marshal enough patience to write logically and not just keymash in sheer rage). The upshot of the article was very good. It suggested that if people are looking for causes of autism, they might do better to look at environmental factors instead of ranting about vaccines.
However, I took issue with some of the article’s terminology. The last sentence of the article reads, “That could have a tangible public health impact, rather than allowing conspiracy theories to overshadow the complicated issues at play when it comes to this disease.”
Autism is, by dictionary definition, a disease. That’s true. The Oxford English Dictionary identifies a disease as “a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.” Autism fits that definition if you accept the word “disorder”, which I will for the purpose of this argument.
However, as another commenter on the article stated very eloquently, we have to look at the social implications of the word “disease.” Let’s be honest with ourselves – when laymen use that word, they use it in a layman’s context. As something negative. As something to be eradicated. And when someone is described as “diseased”, they are no longer part of society. They are lepers. It’s okay to dehumanize the diseased, because in most cases, they wind up locked away, or dead, or in other ways no longer part of society.
And yet, when us “diseased” try to advocate for ourselves, we get charming replies like the one to the left. For those of you who don’t know, being accused of “‘splaining” something (I think it originally showed up in the lexicon as “mansplaining”, but I’ve also seen “whitesplaning” and “ablesplaining”) means that you are explaining something to someone who already knows in a condescending manner. The thing is, you can’t really do it if you’re not part of a majority. A person of color can’t “color-splain” anything to a Caucasian person; that would imply that the person of color held the position of societal power, and unfortunately, that’s not how it is. For this person to accuse me of “autist-splaning” took my breath away, because it’s blatantly disingenuous and just plain illogical, in addition to being rude.
It also, I admit, bothered me to be called a SJW (Social Justice Warrior™). Social Justice Warriors are, frankly, insensitive jerks; they populate more of Tumblr and other social networks than I want to think about. The ones I’ve encountered have hair-trigger tempers, ready to jump down your throat the nanosecond you use a wrong term. I don’t want to do that, though I do want to educate. I’ve been made to feel like complete crap by SJWs too many time to want to do that to anyone. But at the same time, if someone’s going to get defensive the minute anyone even remotely tries to correct them, what the hell are you supposed to do?
If you read the entire thread of that article, I freely admit that I could’ve been more eloquent. Less ad hominem. (I’d rather be that than an SJW!) But my points are valid: Kristin Cavallari and Jenny McCarthy are hateful and dangerous, spreading misinformation about the effects of vaccinations and propagating the idea that it’s better to die from an easily preventable disease than be autistic. Autistics deserve respect and dignity; we are not diseased, and we are not some kind of plague.
And then, of course, there’s the enlightened soul who posted this comment. “Get over it”? Really? In 2014? I should just “accept” that it’s human nature to treat the different like crap? I’m sure that’d be so much easier for people like this privileged fuckstick; he wouldn’t have to see anyone outside his comfort zone then. It’s people like this who make me want to be loud and annoying just to irritate him. If anything good comes out of this kind of ignorance, though, it does show me what I’m up against.
I’m not a disease and I’m going to make you see it.
This was inspired by a post on Buzzfeed about parenting.
So, most grocery stores are my own personal hell.
- They’re bright, firstly. Fluorescent lights are most common in these stores, and many autists can actually see the 60-cycle electricity in them, so it hurts like the beginning of a migraine. Sometimes I’ve worn sunglasses into the market, but then I get weird looks, and it bothers me more than I’d like to admit.
- They’re often loud. The low hum of a crowd doesn’t bother me – I actually find it rather soothing – but for every crowd just minding its business, there’s the odd woman with a voice like a brick shattering on pavement, or a shrieking toddler that hits exactly the decibel level that makes me start to quiver.
- It doesn’t happen as often, but I’ve encountered a few where the smells are overpowering. Not even necessarily bad, just strong. I used to walk into my old supermarket right by the bakery, and the baking bread, coupled with the olive bar, coupled with the perfumes on various people, it’s enough to get me holding my breath and walking fast. The smell of olives is disgusting to me, but the smell of baking bread is wonderful. It creates a weird stew where my brain’s net output usually winds up as ABORT ABORT ABORT.
- All of this can lead to me acting like a douche at times – it’s not an excuse, but it is an explanation. If you’re s-l-o-w-l-y reaching for every item and s-l-o-w-l-y taking the bags off the rack, I am going to act irritated, because I want to get out of here as fast as I can so I don’t melt down.
Obviously, not everyone – not even every autistic – has the exact same problems that I do. But if you see someone who clearly looks ill at ease, they’re not some freak, they might be on the spectrum.
However, the point of all this is – it’s my choice to go into these places. I could get all my stuff from smaller markets (especially in the big city where I live now), but I go into the big box stores for certain items, and also because it’s a matter of personal pride. Sensory overload will not rule me.
It is not okay to make an autistic who is younger, who may not have that personal choice, go into a place that causes them pain. It’s just not. Some mothers in the comments of that Buzzfeed story spoke blithely about taking their very small autistic children into the grocery store so they can “learn to adapt” and “conduct themselves appropriately.” This is an extremely upsetting thing to hear from people who are supposed to know better. It smacks of the need to “make us normal” instead of trying to understand us.
We do not”adapt” to sensory overload. We just don’t.
Believing that we do assumes that we have control over what overloads us. We don’t. And you should be ashamed of yourself for thinking that we do. Yes, ashamed.
The only thing you are doing, by taking a small autistic child into such an environment, is creating an intense fear and/or hatred for that environment. It won’t magically become “the grocery store” if you throw them into it enough. It will still be “that place that hurts my head and my ears.” They will learn to dread it, to fear it – instead of associating it with people and happy social interactions, they will associate it with pain. If you throw a kid into the deep end of the pool at age six, they won’t magically learn to swim. They’ll be terrified of it until they’re older.
The answer, though, is not to keep your autistic child at home – or, for that matter, if you’re an autistic adult, to stay at home yourself. The answer is to think like us. Think like a square peg. Not a round hole. Presume competence.
If your child is tiny, maybe it is best to leave them home. Or go at off hours, as my parents often did with me. But if they can communicate (and no, I don’t just mean by speaking), try to get them to wear a hat. Earmuffs. Sunglasses. It’s a lot more understandable when children wear things that seem incongruous. Make it fun, even – one family I know has a special Quiet Headband for their little girl in the grocery store and movie theaters and other loud places, and the parents let her choose the color, decorating the earmuffs and basically making her feel like Wonder Woman.
We do in fact listen to reason a lot of the time. Sure, sometimes we don’t, and then the tough choices have to be made. I never intended to say that parenting any kid, even a NT kid, is easy – but these mothers are hurting their children. Any insistence on “normalcy” usually hurts us. We’re not “normal”, and we should be accepted for that, instead of made to fit the mold. We can learn, and we can grow at our own pace – but we can’t “adapt” how you want us to. We can’t control that bright fluorescent lights hurt our eyes. We can’t control that the sales clerk in the next aisle has a voice like a chainsaw in our heads. Stop thinking we can.
We can’t control how we feel, only how we act, and at certain ages, we can’t even control that. Trying to teach us to “adapt” only helps us cling to the familiar. Because it’s all we have.
So if you see me in a grocery store anywhere near you, please accept that I’m doing the very best I can. And stay out of my way.