Wednesday, May 28, 2014

You, yes you, need Autistic friends

Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.

So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.

The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I don't mean a mentoring relationship, though those are extremely important and I am a big fan of mentoring (and mentoring your child & being friends with you are not mutually exclusive). I definitely don't mean "translate my child to me" (which is not a friend thing particularly). I mean find local Autistic adults with whom you have common interests and connect as equal human adult people.

There are a whole lot of reasons this is the best thing you can do for your child:

First, and possibly most importantly but mileage varies: your child is noticing things. If you go through a mourning phase, or a difficult adjustment phase, your child will notice and possibly blame himself. Your child may not have the vocabulary for it, but at some point he will figure out that he isn't the son you planned for and dreamed of, and he might blame himself for that. We figure it out when we're a disappointment, even if you do your best to hide that you're having a hard time. Many Autistic children get in our heads, accurately or not, that our parents only tolerate us because they're stuck with us.

Your child needs to see you choosing to be around people whose minds work like his. It's much harder to think your parents hate you and hate your brain when they seek out the company of people who think like you. Seeing the adults who are dearest to you--and like all children, Autistic youth default to loving their parents--seeing them find someone who reminds you of you? That's supremely important. Do not underestimate the effect this can have, just knowing that your parents would choose to be around you even if they weren't "stuck" with you.

Another reason: many disabled children never meet an adult with their disability. You might be surprised, and a bit saddened, at the conclusions we come to. Some folks come to the vague idea that we'll outgrow our disabilities (and when there's no sign of that, we're reminded that we're disappointing, because you can bet we're getting that message from someone in our lives). Or, I have friends who concluded that their disabilities were fatal. That's a recipe for severe anxiety, thinking that you're dying but you feel fine and no one has felt the need to talk to you about your inevitable demise. We need adults like us; this anxiety is completely unnecessary.

Your child also needs role models. She may not be able to fill your shoes, or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in her immediate sphere. But my shoes may fit, or those of another adult Autistic. All children need people in their lives who they can realistically emulate, & Autistic children are no different. I was pretty young when I knew the adult-woman things being modeled for me were just not going to happen ever--and alternatives were never presented. I was surrounded by folks who were similar to each other and not much at all like me. This is stressful. Making your own make is hard, and it's harder when everything you do is wrong (the premise of somewhere between many and most autism therapies, and a message also sent by peers, random strangers in the store, other adults, etc). Once again, anxiety. It's easier to believe you aren't Doing It Wrong when you know happy adults who took similar trails. Knowing options for the future? Seeing unconventional but fulfilling adulthoods? So important.

If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can't speak for everyone) welcome friendly parents, but your child is one of us. It's wonderful but also overwhelming and scary to discover a place where you're "normal" when you've never been, especially all alone. Even good overwhelm is unpleasant when it gets too big. You can make this less of a shock by having Autistic friends. "I'm not alone" doesn't have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn't alone, that there's a whole community that will embrace him because he's one of ours. The gift of growing up with this knowledge? I cannot imagine it having anything but good effects.

Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're good friends. We might provide insight to things about your kid that you never thought of, completely on accident. Your way of looking at the world may accidentally clarify things for us, too. But in my experience, Autistic people are the funniest people on earth, and the most dedicated to making sense and to fixing things that are not right (admittedly, my sample might be skewed, but I also have a very large sample size). That's how the people I hang out with roll. Making friends with us isn't just good for your child. We're good for you, too, and you can be good for us. A true friendship is a mutually beneficial relationship. We have a lot to offer each other.

So breathe, put down the pamphlets about all the different therapies, breathe again, and look in your networks for some Autistic connection. It'll make your life, your child's life, and some local Autistic's life, better.

Wednesday, May 7, 2014

Real People

Some will accuse me of perseverating or refusing to let go (of something that wasn't even exactly atoned for but whatever). I really don't care, because clearly this is something people don't yet understand.

Under. No. Circumstances. Say. Some. People. Aren't. Human. EVER. DO NOT DO THIS.

Others will declare I am being too literal, but the history of these declarations, particularly for Autistic people, demands I be literal.

It's not just the changeling legends of old. It's how they live on in systemic dehumanizsation of Autistics & other disabled folks, a legacy we will never escape without radical changes.

People will say "well I hate people, so be glad you aren't one," but I am so very not being even a little facetious right now. This is not a topic for levity at this moment.

People deciding we aren't human gets us hurt, it gets us killed, it does tremendous emotional damage in addition to physical. It makes self loathing just a little bit easier.

I knew I wasn't a real person by kindergarten. Real people don't need to stand up sit down stand up sit down stand up sit down good girl MnM. Real people's names aren't at the top of a behavior star chart when everyone else is mean and scary and in their personal space (so much for ABC, eh?). Real people are allowed to laugh and to cry.

Real people are allowed opinions, even unpopular ones. Real people's socks & underwear aren't scrutinized daily to make sure they aren't inside out. Real people don't have everything they love leveraged to make them perform.

And then I was declared a good facsimile of a real person-but that was no better. Real people are allowed bad days; facsimiles are not. Real people can have quirks and odd habits. Real people can say "no".

Even today the changeling & demonic possession myths live on: real people aren't almost drowned in exorcisms (the first murder of an Autistic I followed closely? The boy was suffocated by a minister kneeling on his chest 'casting out demons'. That makes the holy water drowning look tame). Real people aren't scared within an inch of their lives to "bring you back to me". There are lines one does not cross when dealing with real people, lines that are trampled over when it's just us.

Because we aren't real people, & don't even get the rights of them when we pretend our damnedest.

This is the history--and the present--you dredge up for our community when you say someone, anyone, "isn't human". It's a history where people start from that assumption & where anything is justified to change that. And nonpeople are always scrutinized so closely we're never going to meet the moving standard.

It isn't funny, it isn't cute, and it isn't acceptable. Think, really think, before you write.

Monday, May 5, 2014

The Feels Double Standard

Frequently (yes frequently. Not occasionally or sometimes or once in a while. Frequently) a parent or family member of a disabled person will say something really ableist and flagrantly made of red flags. Like, oh, "I wish my disabled child had died at birth".

For what should be obvious reasons, this tends to upset--or even trigger--disabled people. And then...the double standard sets in.

Abled people want us to understand this mother's tragedy, this brother's difficulty. They think we should stop confusing a parent who has said to mass media outlets "I wish my child had died" with our own parents. Patterns don't exist, don't you feel her pain? They insist it isn't saying anything about us (cultural context, like patterns, don't exist), we are nothing at all like that brave person's relative.

And then when we call bullshit on these silencing tactics and dismissiveness? Two thing happen, usually at once:

1. We are accused of being "irrational" or "too emotional" or "unable to view this objectively" or "too angry" or "projecting or any of 10,000 ways they have of saying "ummm I don't want to listen to you so I won't."

2. Invariably, able people, often but not exclusively mothers (who may or may not have disabled children), declare themselves triggered by those meaniehead disabled people, who have no empathy and make them feel unsafe.

Let's explore how we got here. Usually, the first thing a disabled person does in these situations is express that these storeies are triggering, and/or point ouut that uncritical reporting actively makes the world less safe for  us.

...The reaction to that, I already described: people demand that we understand the family's tragedy. Think of someone besides your self they say. Gosh, not all parents are like yours. Empathy. Shoes. Not like that child.

In other words, we say we're triggered by people wanting us to not exist, by saying they wish people like us were dead or they hate them or their disabled family member ruined their life, and abled people demand we understand that we're objectively wrong to feel that way.

That would make you angry too.

And then responding is irrational and triggering...except our triggers five minutes ago didn't matter. Oh but do theirs ever matter. Stop being so mean, gosh, how dare you cause someone to feel bad by calling out their flagrant bigotry.

"Being told I am expressing bigotry" is not a more legitimate trigger than "being systemically dehumanized and expected to accept that people want you dead".

Unless, of course, person A is abled and person B is disabled. Cuz in that situation, only the real person has real emotions, deserves real respect, or is at all even capable of being triggered.

Yes, this is how it works in most spaces. This isn't how it should work, it is predicated on lies and bullshit and people abusing their privilege, but it is how things function right now. Abled people? This is something you need to step up and change. You very conveniently have it set up so that we can't, because if we do we're the biggest asshats on the planet just for saying maybe an able person is wrong.

If you're truly dedicated to non bigotry, you should probably reflect on that. And start fixing it.

Sunday, May 4, 2014

Guest Post: Life is Hard

This is a guest post by Myria, who does not have her own blog but may borrow mine at any time.

My daughter is going into kindergarten next year and I'm scared. I know that if you are a parent you can probably relate, regardless of your child's diagnosis. Specifically, to give a small sample -

I am worried because my daughter does not yet have a way to communicate everything she needs to say. I am worried that her sleep issues will keep her out of school, that seizure activity will be mistaken for purposeful misbehavior, that purposeful misbehavior will be mistaken for seizure activity, that she will become overwhelmed and not be able to participate. I am worried about her being objectified as either the sweet little disabled girl or the problem child. I am worried that her intelligence and competence will be dismissed if she can't jump through the school's academic hoops.

My daughter is not autistic, by the way. She has Patau Syndrome, which means she has an extra chunk of the thirteenth chromosome, but many of her challenges are shared by people with disabilities unrelated to hers - me, for example. I am autistic and she is not. We have some strengths and difficulties that are different, and some that are the same.
I took my worry about next year and did something productive with it - I went to an IEP training for parents of children with various disabilities. Going into a roomful of parents was daunting, both because it was a room full of people I didn't know and because as parents, we can and do get away with a tremendous amount of ableism. At this training though, I was pleasantly surprised. The atmosphere was positive and encouraging. I learned a lot of useful information that will help me with my daughter's IEP team. The speaker was fluent in presuming competence and so were the other parents.

Except for two.

They talked about how difficult life was with their son and how no matter how hard it is, you just got to accept that the child you dreamed about never existed, and you got to be the best parent you can be to this child no matter how hard it is life is so hard we're so disappointed we're soldiering on...
I've heard this before, of course I have. It's everywhere. When my daughter was newly diagnosed and her doctors would not speculate about her life expectancy (at four months old, she had already beat the odds they would have given her at birth), I was isolated in my terror, haunted by images of tiny coffins every time her breath faltered. I went online seeking connection and support, reading along on forums for parents of disabled children. Guess what I found? Autism parents. My mother was great, and for myself I had stuck to the autistic forums, feeling no need to go into the parent spaces, so I had almost no previous exposure to autism parents. I was shocked and wounded and struck with a deep anger. I clearly remember (can't forget) posts I read during that time.

"How can I feel connected to a child I can't hug?"
"How can I love a child who won't look me in the eye?"

 "It's like she's not even human sometimes."

How dare they. I was counting my baby's breaths and the seconds between them and how dare they. I was like the child they said wasn't human while I silently pleaded with all the universe that my baby's seizure would stop, that this wouldn't be the last day. Everything that has ever been used to hurt me, to discard my humanity, to shut me up so others could use me as they pleased, I read on those forums in posts written by parents. They couldn't love their children who were like me and I just wanted my baby to live.

I am disabled. My child is disabled. These are separate facts that cannot be separated in my person.
And back to the present day -

I am like the child that so disappointed the parents at that meeting. I sat there and didn't say anything because (like their child, like mine) sometimes I can't, and because a crowd of parents is not a safe place. And then all of the other parents, all of them, and the speaker too, gently turned the conversation around until it was at a place that affirmed the dignity of this child while addressing the parents' concerns. During the course of the conversation, the negative parents slowly adapted their language and affect to match the rest of the parents. Did it stick? Who knows, but it gave them a chance to see another way.
Support is important - but if your support network is poisonous, go elsewhere. If there is nowhere else in person, find people online who support you without dehumanizing your child. They are out there, I promise. 

1 Corinthians 15:33: Do not be misled: "bad company corrupts good character."

Myria lives in the Pacific Northwest where she attempts to keep her socks dry. She is autistic and lives in a neurodiverse household (including two cats who live with Siameseness)

Using a Privileged Voice Responsibly


If you are an allistic person, trying to be an ally to autistics, there are things that you don't do.

First and formost:


Do not say things about Neurodiversity, the movement, that are flagrantly untrue. Four hundred of us will say "um that is wrong" and yet people will say Well This One Able Mom Said and they'll listen to you.

If you are our ally, you do not "if you don't X you aren't human".

You do not. You do not. You do not. Learn some history, learn the changeling myths of the past--so many were about us, and so many of us got killed.

Learn some recent history. It's May and already a dozen disabled people were killed, the stories that were told not even saying our names. Instead they were about our 'loving' killers.

We aren't human. That is the cultural meme. Do not spread that. Do not wave your privilege around to reinforce the most harmful of cultural memes. Use it to destroy them or you are not doing good.

To use your privilege voice for good, that's what you have to do. You have to tear them down. Guess what? People aren't going to always like you, when you use your privileged voice for someone other than themselves.

If you only lend us your privileged voice when things are all fuzzy lovey warm for you, then some other privileged asshat comes by and doesn't like it and you completely dump us in the dirt, you're not helping.

Indeed, that is less than helping. Because you tricked us. You trick us into thinking that maybe our words will be listened to when they come out of a privileged mouth and then you say "oh well actually it's ok to say fuck autism, if you don't you aren't human" and you're back to completely untrustworthy.

Use your words responsibly. And do not make alliances you have no intention of keeping. If your motivation is love and hugs, be up front about it. If you want everyone to like you, you're shit out of luck. Allies need to earn trust, and other privileged people don't like being told they're wrong by a real person.

When I tell them they're wrong they make shit up (you believed some of it!) and they make excuses for not listening, but if you're a human they have to at least take it under advisement. Selfish people don't like that.

But it is so much easier to backpedal and throw us under the bus you dragged us out from under, isn't it? That makes you not an ally. That makes you using us for popularity.

I wasn't your project in high school and I am not your project now either. If you want to be popular, make a kitty blog. If you want to do what is right, prepare for some blowback.