autism parents

Fight or Flight

Recently, the brilliant Neurodivergent K published a blog post about hate, and about how autism “awareness” that abounds this time of year is just a cloak for bigotry. It’s a solid piece of writing that pulls no punches, and make no mistake, I agree with them – there is a solid chunk of the allistic populace that hates us. Yes, yes, #notallNTs, but enough. They may not hate all autistic people, but they hate us – the mouthy ones, the “high functioning,” the ones who preach acceptance and break it to parents that we will not call them allies or give them good-parent cookies solely because they bought some blue light bulbs and give money to a charity that actively calls for our neurotype’s eradication.

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Apparently I Actually Have To Say This

I just received a comment from someone calling himself Jerry, who defended Nicholas Richett’s father – the person who murdered Nicholas. He told me several intimate details of Nicholas’s life, many of which I have absolutely no business knowing about, and stated that “[t]here are no homes that will take an autistic child with Nickys degree of autism.” How do you know, sir? And if you’re so concerned, why didn’t you?

He also said that “If you have a strong opinion of what happened to Nicky don’t run your mouth adopt an extremely autistic child.”

[Image description: A stone cross planted in the ground, surrounded by light green plants and grass. Another grave marker is in the back left of the photo, almost totally overgrown by weeds, possibly kudzu.]

[Image description: A stone cross planted in the ground, surrounded by light green plants and grass. Another grave marker is in the back left of the photo, almost totally overgrown by weeds, possibly kudzu.]

(1) You bet your ass I have a “strong opinion” of “what happened to Nicky.” Namely that he had the right to live regardless of what his father thought. I have sympathy for people suffering from depression and anxiety; I truly feel for those who are tormented by so much fear and sadness. That does not give them the right to take someone else’s life. Nothing does. If you can’t understand that, I despair of you as a human being.

(2) Nicholas Richett was in his twenties when he was murdered. That’s not a child; that’s a man. Don’t infantilize us.

(3) Michigan as a state has an absolutely appalling record on the human rights of disabled people. It spawned the woman for whom expletives are too mild. It has bought into the push for medical marijuana to curb autistic “behaviors” (which is not inherently a bad thing, but the insistence on curing behaviors rather than finding out why behaviors happen is infuriating). It has almost no protocols regarding restraint and seclusion of students, which is barbaric. Multiple stories exist about autistic kids being all but pushed out of the school system due to ignorance and unwillingness to accommodate, even though it is mandated by law that they do so.

(4) I now have a “strong opinion” of you, Jerry; first, that you don’t do your research – I’m autistic too, sweetheart – and second, that you have a problem with someone speaking up for a murder victim.

Think about that for a second.

To my audience at large, I’m really hoping I don’t have to say this, but I will anyway: If you are going to comment defending a murderer or attempted murderer of an autistic person, do not waste your time. You will be deleted, and I will rip you a new one for your bigotry. 

We are not burdens. We are not tragedies. We are not collateral damage in someone’s depression. We have the right to live regardless of how scared you are that we’re going to be ~burdens.~ Respect our autonomy and agency. We are people, just like you. If you can’t do that, I don’t want to be in the same zip code as you. I’m astonished I got through this with as little profanity as I managed, because the sheer stubbornness these people display in seeing autistics as less than human is both infuriating and terrifying.

Supermarkets: The Final Frontier

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.

The vegetable aisle of a supermarket, with green bins holding vegetables which include eggplants, tomatoes, cucumbers and other unidentified vegetables.

The vegetable aisle of a supermarket, with green bins holding vegetables which include eggplants, tomatoes, cucumbers and other unidentified vegetables.

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.

“My child won’t succeed!” (“Autism Moms”, Part II)

Dear Autism Parent,

You so often make a point that you’re “just worrying about your child’s future” when you come down on the side of negativity. My child is nonverbal, you say. Autism Speaks is just forecasting what their future probably will be like. I have special worries.

No.

Every good parent worries about their child’s future, but it’s important to realize what that future could be. Whether their child is neurotypical or not – that’s simply being a good parent. And when you make it about you, when you think about your worries, you are casting blame on your child for being autistic. That isn’t being a good parent at all. Sorry.

While autism can be really hard to deal with both for the autistic person and for their family, it doesn’t mean that they’re sentenced to never progress – only that they probably won’t succeed to the highest levels in a neurotypical sphere. We have to make our own, and we need help and acceptance to do it, not pity. Does that make sense?

For better or worse, your child is autistic – and many parents (I don’t know if you are among them or not) try to separate their child from the autism. As if it’s just hiding a perfect normal kid underneath. Of course it’s true that autistic people don’t communicate the same way that allistic or neurotypical people do. But the thing is … so what? What are you (general you) going to do? The choices are to keep trying to expect a child to magically become able to speak or communicate and/or think like a neurotypical, or to accept that they are different and try to find a different way of communicating. Young kids can’t understand that reality, but parents can. Adult autistics can. People who know better can accept an autistic person’s way of communicating – AAC, sign language, typing, whatever. I know a woman who recently posted a photo of a letterboard tattoo* she got so her son could communicate with her no matter where they are. All behavior is communication – if your child is nonverbal but might grunt at you from time to time, or bang his head, that’s communication. It just (obviously) might take more help to decode. But it’s autistic behavior, not neurotypical behavior, because your child is not neurotypical. There is no point in feeling frustrated because your child can’t talk – I’m pretty darn sure they can communicate another way, and you can find it, with the right help and hope.

I accept that you might want to cure your son or daughter, and really, that’s your prerogative. But right now, in real life, you have an autistic child, and I am autistic, and a cure isn’t going to happen anytime soon. I accept that you might want to cure your child because being autistic in this society is hard, and you might think it’s easier to “cure” them than to make society show us respect – but I think the reverse is more true. I really do. It’s of course totally understandable that parents want the best for their children – but when “the best” is to be “normal”, we have to accept that that isn’t going to happen. We have to toss that paradigm out the window and do the best we can with the one we have. There is no cure right now, and I don’t believe there will be one in my lifetime. The avenues they are pursuing right now are not helpful, they are harmful – ABA “normalizing” therapy. Chelation. “Quiet hands.” All of these are designed to shove square pegs into round holes. Why not make round holes instead?

Suzanne Wright, meanwhile, is blind to that possibility that we are in a different paradigm – she doesn’t even understand that there’s a whole different playing field for autistics. She measures us by NT standards, finds us failing, and immediately jumps to the conclusion that we are useless, or tragic. Good for nothing but pain. She has no idea that there even is another playing field that’s just as good and well kept.

You can either dwell on the negativity of having a cure that may never come, or you can accept that this is your child. I know personally what I would rather do.

I still get the impression, rightly or wrongly, that you still wish your child was ‘normal’. Of course, I can’t tell you what to think or feel. But what I can tell you is that there’s no separating the autism from the child. And just because they’re autistic or I am or Amy Sequenzia or Carly Fleischmann or any of the other non-speaking activists I’ve come across does not mean they’ll never going to amount to anything. Only that they may not measure up in neurotypical eyes. And you can take that fact and let it eat you, or you can help them be the very best autistic person they can be.

Sometimes I get confused and mixed up about my own place in the autistic movement, I have to say. I don’t want us to ever be “separate but equal”; we are not X-Men, we are not freaks. But we also have an identity as autistics that deserves respect – most of all, especially from, people like parents. Your child may succeed without the power of neurotypical speech, but they’re a lot less likely to succeed in life without love or even respect from the parents who are supposed to love them.

I am greater than Suzanne Wright believes I can be. And I assure you, so is your child. Accept them for who they are, and believe it.

* Image from the Autism Women’s Network Facebook group; will be removed if the poster asks.

A letter to an “autism mom”

Parts of this letter were written as a response to a blog post which was posted by a mother of an autistic child in which she stated that Suzanne Wright (cofounder of Autism Speaks)’s vicious article of Nov. 11* “didn’t offend her”. I replied, but I wanted this to find a wider audience. There are still some “autism parents” and other neurotypicals who do not comprehend why Autism Speaks is so offensive to many spectrumites; I can only hope that the more we write, the more people will understand. -cc

Dear Autism Parent,

I am going to try to respond in a civil way, even though I find your opinions very hurtful.

The reason why I respond with such anger when people agree with Suzanne Wright, and why people like Shannon des Roches Rosa represent how most of us (adult autistics) really feel about this is because at its core, A$ is dehumanizing all of us. Me, your child, the most verbal and non verbal extremes, anyone and everyone. And some parents are outraged, as I think they should be. The way Autism $peaks talks about autistic people (children and adults)  is the way that someone talks about a plant – no, a couch. They don’t speak to autistics or about autistics like they’re human. And don’t we all deserve to be treated like humans? Every one of us?

When Suzanne Wright uses phrases like “lost”, “missing” and the like, it is negating everything any autistic has ever done in terms of making strides to fit into “normal” society (which may or may not be a good goal anyway). If your child learned to use a letterboard? Big deal, he’s not holding a “normal” conversation. I got over my telephone phobia? Big deal, if I don’t learn to love it like “normal” people do. Everything is predicated on her and A$’ idea of “normalcy”. And the rules of the game are accordingly rigged.

I can drive, type and usually hold a coherent conversation? [sarcasm] I clearly must not be “autistic enough” to understand [/sarcasm] – never mind that there are days I go completely nonverbal, that there are times when my routine being thrown off by something as small as putting the cat-box in a new place reduces me to a huge meltdown. By contrast, someone like the child of another blogger I follow – nonverbal, requiring 1:1 support, well. [sarcasm] Clearly they’re “too autistic” to ever have an opinion or to communicate in a valid way [/sarcasm] (speaking is not the only way to communicate!). By the logic of people like Suzanne Wright, autistics will never have a say in their own destiny, regardless of what end of the spectrum they are on. I certainly can’t speak for you, obviously, but I can’t play that game. Wright’s rules are rigged against me and those like me from the start, like I said. So why play?

This is why it’s so hurtful to see parents who allegedly love their children (I say allegedly only because I do not know you personally) fall victim to this woman. By choosing to buy into what this woman is saying, parents are saying that they wish they had a different child; that they are suffering because their child is autistic and not normal. That they want the “autism” gone, that they want the “perfect child” underneath. There IS no perfect child underneath. Some parents I’ve read about can’t even say the word “autism” – they say IT or ‘his disability’ or something else equally vague and irritating. It’s not like Beetlejuice – saying “autism” three times won’t make your life explode or your marriage destruct.

I’m not a parent, and I know you may very well tell me to go away, that I’m not “really” autistic, that I’m “not like your child” so I can’t possibly understand what you go through. You’re right; I don’t. Because I was diagnosed later in life, but I also have a mother who shrugged and said “I’m glad you know now” when I told her I was autistic. I have a mother who understands that I need help with some things, but doesn’t blame me for the source of her money troubles or any of the issues my mother may have. When my mother was sad, I knew it, even as a six or seven year old kid. Do you want your child to know you’re sad because of them? Because even if they can’t tell you “Mommy, I wish you were happy”? They know.

Imagine being told that you are a burden and you make your parents’ lives harder.

Imagine that, if nothing else.

Even if you ignore everything I’ve said so far, even if you persist in being blind, wake up to one thing: supporting Autism Speaks is supporting someone who hates us. And no, that isn’t hyperbole. Suzanne Wright sees your child as a tragedy. Autistic adults and allied activists prefer to see your child as someone who can rise above the box that society – and perhaps, their parents -have put them in. What do you prefer?

Suggested reading:

http://wearelikeyourchild.blogspot.com/ – A collection of autistic writers detailing how yes, we are all like your child.

http://www.autreat.com/dont_mourn.html – “Don’t Mourn for Us”, by Jim Sinclair, an autistic activist who works with parents.

http://nonspeakingautisticspeaking.blogspot.com/ – The writings of Amy Sequenzia, a “profoundly disabled” (by your measure) autistic activist who is nonverbal and epileptic.

* I steadfastly refuse to link to Autism $peaks. Google it; it’ll be up there.