Respect your elders, young man.
Always comply with the authorities.
Listen to adults.
Do what you’re told.
Great job following instructions!
You did exactly what I asked! You get a sticker on your chart!
I did just as I was told! Hooray for me!
As a family, we love to laugh about how cute Katie was when she was tiny and refusing to do something. Her typical method of defiance was, well, adorable. Mostly because her preferred way of expressing her displeasure at something was to scrunch her nose, cross her arms across her chest, set her little feet in her tough girl stance and issue a firm, “No!” followed by “No liiiiiike it!”
As cute and clearly harmless as her bluster might have been, it was effective. There was no misunderstanding the message – “Back off, Bucko “cause I’m not buying what you’re selling.”
Brooke’s refusal mechanism was far less reliable. With no other way to communicate displeasure (or fear or discomfort or pain or overwhelm), she screamed.
Brooke’s language development was echolalic, both delayed (often called ‘scripting’) and immediate (known as ‘parroting’). For example, if we asked her if she’d like a drink, she’d ‘answer’ by saying ‘drink.’ With little to no understanding of what was happening, neither Luau nor I recognized that she was not actually responding to our question, but instead just echoing the last word she’d heard.
Encouraged by her non-answer answer, we might offer some options from which she could choose. “Would you like milk, juice, or water?” To which she would respond, “Or water,” and we would dutifully run off to go get her water. When we handed it to her, she would scream.
Perplexed, we would try to figure out what was upsetting her. “Do you want ice in your water, Brooke? A different cup? Is it too cold? Too hot?”
She had no reliable way to say, “I’m not even thirsty, you jackass. And if I were, I’d want milk. Why are we still talking about the damn water?”
She had no way to say, “No. I don’t like it.”
This weekend, I had the honor of attending a meeting of our local chapter of the Autistic Self-advocacy Network (ASAN). I could talk about the meeting for days, but for now, I bring it up because it was there that a young woman with autism (her preferred language for self-description) said, “It is SO important that people with disabilities are taught to say, ‘No’.”
I don’t remember what led to that sentence and I don’t remember what happened afterward. It was one of those seminal moments when the loose threads that have been swimming aimlessly in my brain find one another and I know that I will have no choice but to do the work necessary to sew them together into a coherent quilt.
In that post, she talks about how important it is to learn to say, “No.”
She talks about what happens when our children can’t.
I was raped. I was abused — domestically and otherwise. I was molested. I was taken sexual advantage of. I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies.
Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.
I ached for her. And for my children. For my beautiful ten and twelve year-old girls. I thought about how important it is for me to teach them BOTH that they can and should and MUST be able to say no. It is my job as their mother to ensure that they understand and are able to assert absolute domain over their own bodies, their own rights to self-determination, their own individual wills.
With Katie, that will happen in conversation. With Brooke, it will be more complicated. But in some ways, it will be even more important.
Our children are vulnerable. All are, but ours far, far more than any others. Who better to victimize than people who can’t report their crimes, or who are likely not to be believed or understood when they do? Who better to lure into horror than children who trust by default? Who better to rape than people who were never taught to say no? Who easier to abuse than those who have spent their lives learning to comply with demands, no matter how uncomfortable?
In her 2005 post, The Meaning of Self-Advocacy, Amanda Baggs writes the following.
When one inmate in an institution fights back against the staff in defense of another inmate who is being brutalized, this is self-advocacy. I have only seen this happen once. She was brave and heroic in the genuine senses of the words, and she paid the price for trying to protect me.
When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy. When his initial peaceful methods are ignored in favor of restraining him and violently shoving him into a car so that staff can meet their schedules rather than listen to him, his decision to bite the driver is self-advocacy. I was there in the car with him.
When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy. That was me and too many others I knew.
When inmates of institutions (both traditional and those that masquerade as community), including those who are said to have no communication, devise covert means of maintaining communication and friendship in spite of staff’s attempts to stamp it out, this is self-advocacy.
When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.
Saying no can be a radical act. Respecting no when we hear it should not be. Hearing starts with listening — and with our kids, at least with mine, listening means watching. “No” can be hard to find or understand. But when a human being screams, there’s a reason. Brooke’s scream meant just as much as Katie’s “No like it.” My job wasn’t to just get her to stop screaming, it was to understand WHY she was screaming — and then to give her a better way to say, “No.”
In 2011, I read Kassiane’s post, Advocacy Begins With No, detailing her some of her work with a non-verbal nine-year-old boy.
What’s the first thing little kids tend to learn, to take power over their lives in small ways? The word “no,” right? I wanted C to learn to say no, learn that he could ask for things and get them, learn that he could say he didn’t want to do things and have his wishes respected. A lot of our time was spent playing, with him indicating he wanted or didn’t want things, and me putting into words “No, don’t take your block? Alright!” or something similar when he indicated in any way that he didn’t like what I was about to do, or did like or want something. I wanted to show him that adults could take his wishes into account.
So many of the methods that we use to teach our kids, ABA most saliently, prize and reward compliance. The lessons that our neuro-typical kids learn about pleasing people are magnified a thousand-fold by this systemic insistence on conformity and obedience. By a reward system that demands ‘appropriate’ or ‘expected’ behavior on the outside, regardless of what’s happening on the inside.
And, to be honest, it scares the crap out of me.
Two years ago, I wrote about a nightmare that I’d had about my girl being sexually abused.
I notice a hot tub a short distance away and consider getting in. I walk closer and find a clump of children in the tub. I see my girl, my Brooke, in the tub. She is naked. There is a little boy on top of her. His arms are around her shoulders, wrapping her in a tight hug.
She doesn’t protest. She loves hugs.
He kisses her on the lips, then gets up and moves out of the way.
I watch in slow motion – as this nightmare within a nightmare becomes clearer. There is a line of boys waiting for their turn.
Brooke has no idea what’s happening.
On Friday afternoon, my girl thought she had made two new friends on the school playground. She didn’t understand that they had been alternately teasing her and running away from her.
“You two are my best friends,” she had said, the moment before they finally turned their backs on her, whispered to one another, then turned back again only to roll their eyes at her before running away, leaving her standing alone.
As Luau tried to take her home, she said, “But we can’t leave my two best friends.”
I am woken by a jagged sob. It’s mine. My pillow is soaked with tears.
I am terrified.
Our children need to know that NO is available to them.
That they have the RIGHT to refuse demands.
That THEY control their own bodies.
That NO ONE has the right to hurt them – EVER.
That what THEY want matters.
And above all, that we are listening.
For further reading …