I Will Not Bow Down

(( 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. ))

I like the title.

That’s it. That’s pretty much my new life philosophy when it comes to autism. Because frankly, I’ve had enough.

I’ve had enough of neurotypicals baiting and insulting me about my diagnosis, about my opinions on Autism $peaks, about my tone and my logic. I’ve had enough of constantly having to defend myself from idiot concern trolls who go on and on about the “low functioning” (news flash: functioning labels are bullshit) and how selfish I am for not wanting to cure autism immediately. I’ve had enough of “you’re not like my child”, “you’re not really autistic”, “you must be very high-functioning”, “you need to be nicer”. One obnoxious fuckhead even told me to “get help” for my “anger against innocent people.”

If you are a neurotypical who thinks they know more about autism than autistic people, if you try to speak for autistic people, you are not innocent, and you have no right whatsoever to take away my anger or tone police me.

My anger is justified. Because while I am who I am and I’ve made my peace with that, it has come at a huge price and no one gets to take that from me.

Point One. Neurotypicals see me type, see me make points, and immediately tell me that I am “high functioning, so it’s different”, which implies a host of things. It implies that I don’t know what “real” autism is (whatever the bouncing fuck that means!). It also implies that I don’t need help, that I’m basically normal, and it implies that I couldn’t possibly know what they’re going through, because their child is usually “low-functioning”, nonverbal or both. Some neurotypicals even accuse Aspergians (as I was once diagnosed) of being nothing but attention-seekers. Sometimes they say I’m “projecting”, that they “don’t mean it that way.” What the hell other way could you mean it? What other way would require you to use “high functioning” as a pejorative term? How else could it be “different”? You can say you aren’t gaslighting all you want, and maybe you don’t mean to, but you’re trying your best to gaslight me out of my identity. I’m going to bold this so it hopefully registers: When you tell me that I “must be high functioning”, you are telling me that you don’t respect me or my experiences.

The part they usually refuse to listen to is that I am a person who can hold a coherent conversation (usually) verbally or via typing. I can drive, go to crowded places for short periods of time, and I got through law school with a decent enough average. I passed the bar on my third try – I am a licensed Illinois attorney. I am also a person who is almost completely unable to read any type of non-extreme facial expression. Routine changes send me into a flapping meltdown. Sometimes i am so overwhelmed by frustration and fear and sensory explosions that I can neither move nor speak.

Functioning is not static. Some days I’m high-functioning enough to hold conversations in three different languages, two of which have different alphabets. Some days I can’t do much except curl up in bed and cry. Am I still “high functioning” on my bad days? Or am I “low functioning” then? Would I be “like your child” if I tried to have a conversation on those days? Or would you tell me on those days I’m “too autistic” to have an opinion, instead of “not autistic enough”?

Oh, and by the way, people routinely don’t believe me when I say I have a J.D. and a law license. Either that, or they tell me I must not be autistic. I don’t fit their definition of autism, so instead of changing their definition, they attack me. Opening one’s mind appears so difficult for so many people. If someone is autistic, they are like your child. There’s a wonderful blog devoted to dispelling that exact myth that has been a godsend for some people, I know. It’d probably help more people if they would condescend to go read it.

Point Two. Some neurotypicals also claim that they have the right to speak for the nonverbal, especially if it’s their children or other family members. Say it with me: no, no, no, no, no. I don’t care if it’s your child, and I don’t care if you spend every waking moment with them. You do not get to speak for them in autistic matters especially. Because every single person on this earth has the ability to communicate. Not always in words, and not always when or how you want them to, but it’s there. So many neurotypicals do not – or will not – grasp the fact that behavior is communication. Always. Every single behavior your child has is saying something. It may be as simple as “I have to go to the bathroom”, and they may not intend to tell you something, but you can always learn from everything they do. If you know how. Or if you care to know how.

I can hear the autism moms now saying “What, so I’m supposed to let my kid do what he wants? Run into traffic? Never take his medicine?” No, of course not. Slow your roll. I said you aren’t supposed to speak for your kids, not that you aren’t supposed to parent them. Kids need guidance, love and care, obviously, and sometimes that means getting tough or saying no – but when I say you should not speak for them, I mean literally that you should not articulate what you think as what they think. If your child is nonverbal, and someone says “Would you take a cure for autism if one was found?” You don’t get to say that your son would take it – because you haven’t asked. You’ve given your opinion and tried to make it his. And that’s not only dehumanizing and rude, it’s just wrong. It’s ableist – being “normal” is not the only way that someone can be happy.

For the record, I am staunchly against cure research. You can’t cure red hair or blue eyes; why would you be able to cure how your brain is wired? Autism is a literal different wiring in the brain. It isn’t a disease, and it isn’t something that requires fixing. That said, I respect the right of other autistics to disagree with me. If you’re autistic and you desperately want a cure, that’s your right. I feel a little sorry for you, given how sad you must go through life, but you have the absolute right to want a cure. It’s not my business to speak for you. However, if you’re neurotypical and you;re going to dare to call me selfish because I don’t want or need my autism “fixed”, please go fuck yourself. People who think that way cannot grasp of some of the joys autism can bring, and will never lift a finger to try.

Point Three. Autism $peaks. Really, we’re still having this discussion? I think the fact that Autism Speaks openly listed the Judge Rotenberg Center (WARNING: Extremely graphic & triggering footage!) as an affiliated entity should tell you everything you need to know. When the UN Special Rapporteur on Torture tells you that what you are doing is torture, it needs to stop. And it hasn’t. And Autism Speaks is still their partner. Please let that sink in: if you support Autism Speaks, you are supporting an organization that condones torture of disabled people. Please think about that.

Point Four. My tone in all of this. Ah, tone policing. When you can’t win an argument, so you resort to attacking the way the other person is making their points. This is another form of silencing that happens a lot, and it’s something that happened to me recently. Multiple people accused me of being “angry” and “rude”, some even going so far as to say I wasn’t able to control myself “because of my autism”, or that I “needed help.” Now, there is nothing wrong with getting help for anger issues if you need it, of course, but to say something like that because your feelings are hurt makes you the lowest form of scum.

Let me set you up a scenario. Imagine that a characteristic of yours was somehow not the norm. White skin. Brown hair. Being Christian. Being noticeably skinny. A birth mark in the shape of a crescent moon. Whatever.

Imagine that you were asked about this characteristic a lot. That the questions and comments were almost identical, every day. “Are you sure you’re Christian? You don’t look Christian.” “My friend’s sister is white, and you aren’t like her at all.” “Surely you can gain some weight if you just try, right?” “That birth mark must make your life so hard.”

Imagine that along with the well-meaning people who just want to learn (but you have to educate), that you get out and out hatred or pity. “Poor Christians. I wish there was a cure for that!” “Well, she can’t really be white, she talks too much.” “You are so selfish, I can’t believe you don’t want a cure for birth marks!” “What about the people who can’t do things because they’re brunette? Think about them!”

Imagine that you try to engage in a civil discourse with people about why their questions and comments are inappropriate. Most of them will get defensive. Accuse you of being “politically correct.” Accuse you of not wanting help, of spurning allies for your cause. But if you dare to utter a single uncivil word, they will call you a loose cannon. They will say “Well, I was going to listen to you, but you’re being childish, so I won’t (never mind how much sense you might be making, they just want you to sugarcoat it for them!).” They will accuse you of being a spokesperson for your entire group. “It just proves, Christians are unstable.”

And imagine this happens almost every time you get on the internet and dare to have an opinion.

And you want me to be nice?

No.

I will not “be nice” if you are not nice to me.

I will not allow you to speak for autistics, who are all capable of speaking for themselves.

I will not allow you to invalidate my feelings or my struggles just because you think I can “pass”.

I will not allow you to tell me what to think and how to act.

but I’m so tired of fighting.

I shouldn’t have to fight this hard to be a person.

but I do.

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3 comments

  1. One of the few neurotypicals (sadly – I wish there were more). My son is 7 and “not autistic enough”. Luckily we haven’t run into that kind of thing – yet – but your words give me the courage to speak UP for him (not speak for him) and model advocacy until he’s ready to take it on himself. I’m sorry so many people don’t listen. I hope more will. (And I loved “bouncing F…” 😉

    1. This post is probably angrier than it ought to be, but it’s the only way to get it all out. Some NTs are just wonderful – and yes, speaking UP for your child is what a parent should do, absolutely! But some … sigh. When someone has the audacity to tell me that I “don’t know what I’m saying because of my autism”, that’s such a staggering level of hate and ignorance that I just feel powerless. And yet, if I roll over, then they win. “Illegitimi non carborundum” should be the autistic motto.

      1. I really hate that too – the irony of it makes my brain buzz, or as I like to say, if I roll my eyes any harder, I’ll sprain my eyeballs! It’s perfectly fine to be angry when you have a good reason to. I think it’s only a problem if you get stuck in it. And you’re not 🙂

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