how to ally

A Wrench In The Works

You’ll see a lot of posts about the “symptoms” of autism that make people uncomfortable, such as visible stimming, alleged lack of empathy (which is, in reality, flatly untrue in most cases) and social awkwardness. However, there’s almost nothing out there about another access need of ours that can really throw a wrench into the proverbial works: a strong need for constant routine.

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The Destructiveness of Fear

So. Boycott Autism Speaks is sponsoring a flash blog with the theme of “Love, not Fear.” It got me thinking.

I was trying to come up with something snappy to say – something intelligent and witty, something quotable. But in the end, I kept coming back to the same thing: that we all, allistic and autistic, neurotypical and not, need to adopt this as a mantra, for a happier world.

Fear breeds divisiveness. From both ends of neurology.

Neurotypical people fear for us – good parents and allies fear society’s ignorance and cruelty. But some neurotypicals also fear us. I’ve seen it firsthand. Coworkers and potential friends and distant family members would view me like a bomb. How do I talk to her? Is she going to start screaming over something? What if she snaps and hurts me? Why does she flap her hands like that? She’s not normal.

It’s hurtful, and it’s dehumanizing to hear out loud. To hear fear in someone’s voice when you’ve done nothing to deserve it except be born and live your life. I hear fear in Suzanne Wright’s appalling words when she talks about autism like an epidemic – but it’s not fear for us. It’s fear of us. And I console myself with how empty her life must be – how much fuller and brighter it would be if she chose to love who we are instead of fear what we could be.

There is another side of the coin, though. Some autistics definitely fear some neurotypicals. Even when their neurotypicality is the only thing that connects them to the monsters of childhood, of young adulthood.

Some of our fears are absolutely justified. Some allistics – some fellow students, some coworkers, some caregivers, some parents – will abuse us, or “snap” and harm us. And be lionized, martyred and cast like Joan of Arc being saved from the stake in a disgusting display not seen when it’s a neurotypical child suffering.

But others – others do good. Some fellow students stand up for us. Some coworkers love to work with us. Some caregivers want the best for us. Some parents will fight to the death for us. It’s sometimes hard for me to remember that, with all that we see in the news, in internet comments, in our own families.

But I try to love, and not fear.

I want neurotypicals to love, and not fear.

The biggest myth I encounter as an autistic is that we are not capable of emotion or empathy. If you put aside your terror and your sadness, you might see that we are capable of great love. And in this day and age, we have to be fearless to give it.

I urge anyone reading – be as fearless as we are. Don’t be afraid of what we deal with or how we think. Love the person we can become.

Taking Turns

This morning, I read a Think Progress post about two parents in Iowa defending their hellspawn from accusations of bullying an autistic kid, saying Levi Null “brought it on himself.” I say hellspawn because sorry, you’re a special kind of hellspawn if you think bullying’s fun, okay or acceptable at any time. Period. Bullying implies picking on the weak – fighting implies equal strength.

Think Progress, who usually is a lot better about their sources than this, cited Autism $peaks to comment on Null’s “involuntary movements and difficulties socializing”. Now, for once, that’s true – Autism $peaks has said something accurate about an autistic person. According to the article,  Null has Asperger’s and ADHD – technically an incorrect term, given that “Asperger’s syndrome” is no longer in the DSM-V (which is a post all its own, let me tell you), and autistics, or “Aspies” as we used to be called, do often have involuntary movements, and we definitely have difficulties socializing (I can speak for that last part personally). 

However. In one of the comment threads, an autistic person commented that Autism $peaks was a bad choice to cite, because it does not speak for a lot of autistic people, and that a lot of the time, autism is only a disability because neurotypicals make it so – that is, that since NTs are the majority, any minority way of thinking is seen as “inferior” or “disabled” by many – not all. There were agreements, and then came the neurotypical avalanche. 

One commenter told the autistic “Do you have an autistic child? If not then stfu.”

Another commenter told the autistic that ” Being different is one thing but suffering from severe mental or physical handicaps doesn’t change no matter how pretty you talk about it.”

The ignorance upsets me so much. It really does. Because here is an autistic person just trying to chime into a discussion on something that in theory, all civilized people can agree on – that bullying is wrong, that bullying someone who is allegedly disabled is worse – and they get shouted down. Ignored. Verbally abused. 

We are the be-all, end-all of autism knowledge, because we are autistic and you are not.

I can’t repeat it enough. We are the be-all, end-all of autism knowledge, because we are autistic and you are not.

I’m not suggesting that parents or caregivers or neurotypical allies have nothing to offer. But I am suggesting that in a debate about autism, how about we listen to the people who have it before we parrot our own views? How about we let people who have the most intimate experience of something tell you how it really is, and how best to accept and understand it, instead of pathologizing it? 

That leads to a greater point – something I’ve used with my Jewish friends, something I’ve begun to use with my fat friends, my friends of color, anyone who could be said to be part of a minority group. My excellent roommate (ER) put it like this when we were talking about queer people* – an ally is someone who speaks up for you when you are not in the room. 

When she is not there and people are making jokes about non-straight sexualities, I as an ally can speak up against homophobia, biphobia, trans*phobia, et cetera. Not because I want a cookie, but because it’s the right thing to do. But when someone who is actually queer is in the room, able to speak for themselves, I shut up. Because I’m not queer, and because my experience will never exactly mirror that of someone who is.

When ER hears people making jokes or saying negative things about people on the autism spectrum, or Jewish people, she can and does speak up and say that it isn’t acceptable. But when I’m in the room, she lets me handle it, because she is neither autistic nor Jewish. And she knows that I am. So I should have the last word. 

It’s a lesson I’ve tried to take to heart. I do my best not to “whitesplain” things to people of color**. I do my best not to “able-splain” things to people who are not able-bodied. I can be a good ally to a person of color, but as soon as they’re in the proverbial room, it’s my turn to sit down and shut up. 

In the case of the Think Progress article, though, I am part of the group being denigrated. So if you’ll excuse me, I will not sit down, and I will not shut up. It’s not my turn.

 

* A term she uses for herself, therefore in this context I feel it appropriate to use. 

** Though sometimes I don’t realize when I’m “whitesplaining”, because hi, I has an autistic, I no has good context clues. That’s another post entirely.