Day 19: Acceptance is Communication

Today I am not going to write my own thoughts and perspectives on today's topic of communication.

Instead, I am going to allow the voices of the experts to speak for themselves.

These are the voices of autistic adults.

They are the true experts.

We owe it to them to listen.

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Aspergers Square:

“You wonder why it’s so hard to have a conversation with me.  I have no idea what you are saying.  Way before the trouble with dual meanings and taking things literally and the time it takes to process spoken language and the time it takes to formulate a response that will make sense to you, the first barrier is the noise….

More than one person speaking at once or a TV in the background or that terrible sound coming out of the tiny speakers on your phone or iPad can prevent an autistic person from hearing what you are trying to say.  Too many sounds at once can lead to a meltdown.  My brain is not sorting these things the way non-autistic brains do.  I cannot efficiently weed out what you might think of as background noise....

Acceptance is a room (dimly lit) where people talk slowly and make sure everyone has a chance to communicate in whatever way works best.”

Julia:

 “They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)…

I’m articulate.

(So you don’t have to listen.)”

Amy Sequenzia:

“First thing, everybody communicates.

I will say it again: everybody communicates.

If you don’t understand the method, this only means that you don’t understand, not that there is no communication.

Disabled people who have difficulties with expressive language, or who are non-speaking are often thought of as not being able to communicate. This is because the majority is sometimes too lazy to think outside the box. Yes, I said lazy. We also find it hard to understand the majority’s language but we are pushed and forced to learn it, and to act in compliance. Even when we are only a few steps from the majority’s way, it is never good enough. We are consider to be “able to communicate” only if we speak, and act in accordance to, the language the majority chooses to know.

This attitude, seen in parents, teachers and other professionals is one of the things that need to change.

I am a non-speaking Autistic who has learnt how to communicate in a way that the majority is able to understand. It was not easy, it still isn’t. Even after I had shown how much I knew, how much I was learning, despite not being formally taught, even if I no longer cried as a way to let people know that I was trying to convey a message, the default attitude of teachers, doctors and others was still dismissive. The attitude of the groups I mentioned are still dismissive.

I believe this is also true for other disabled people who don’t communicate in what is considered “the normal way”.

The damaging attitudes toward different methods of communication hurt us not only when we want to be heard, but also when we want to participate, be social, or when we want to listen.

Attitudes toward communication reflect the big problem of non-disabled people regarding disabilities: there is too much “awareness” but too little understanding."

Emma Pretzel:

"we say “behavior is communication” a lot. because it’s true, and important.

it is also a vast, vast understatement.

because here’s the thing. communication? it’s behavior. it is, and it will continue to be, no matter how many times the powers that be try to teach us that language is a set of rules, a dictionary, a grammar-work book or a computer program. language is the way we change and move with our world, patterned and pulled through like fabric and thread.

so when we say “behavior is communication” we don’t just mean “when your kid has a meltdown, there’s a reason for it.” we mean “look at how your child moves, and where, and when. how do they move with people? how do they move alone? when are they still? if they sing and speak and pattern-repeat, what part of their environment plays the tune they’re talking to?”

Sometimes we make our patterns in different dimensions than most people–sideways not time-ways. jokes that are funny not because they say a funny thing, but because when you layer the first context you experienced for these words on top of the current context you’re using these words in, the combination of the two is hilarious. scripts that mean feelings, because the origin of the script is a scene full of that feeling. even scripts that mean feelings because the first time you heard them, you were feeling full of a certain feeling. sometimes it’s like we live a life full of songs reminiscent–your breakup ballad, wedding dance music, earliest church hymn…all these are the size and heft of our voices on repeat.

just because someone speaks the words you speak doesn’t mean that their language is like yours–we build our ideas with different materials, in different environments, for different reasons. the next time it seems like we’re going in circles with our mouths or our minds, remember: even as we circle, time is passing. now is different from one moment ago, which was different from two moments ago, and that means every time we do a circle, the circle has changed. maybe only infinitesimally. but truly. and sometimes circles can get wider, or narrower; sometimes it might look from above like we’re tracking the same path, over and over into the ground…but if you climb down onto the ground at our level, you’ll see we’ve been spiraling up to the sky, or carving down into the center of the earth.”

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We need to change our definition of communication so everyone can join the conversation.

We need to find a way to listen.

Day 12: Acceptance is Loud Hands

Ben uses his hands to explore his world.

There is a term in the autism world known as quiet hands. 

If you haven’t heard of it, you can read a heart-wrenching yet eloquent description of it here from someone who experienced it firsthand as a child. 

Quiet hands is something taught during Applied Behavior Analysis (ABA), one of the most popular therapies for autistic children.  

I won't spend a lot of time describing ABA in this post.  Suffice it to say that it is a behaviorist therapy model where children are positively reinforced when they perform certainly socially acceptable behaviors, like raising their hand on command.  The goal of ABA is to reduce certain "problem" behaviors so that the autistic child appears indistinguishable from his peers.  

Many parents swear by ABA and the progress that their child makes in the therapy.  Many parents even tout that their child has been cured of autism because of ABA.  However, the progress that the child appears to be making comes with a steep price.  

 As Sparrow, another eloquent autistic blogger describes, “But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.”  You can read the article in its entirety here- 

Ben does not take part in ABA therapy, but let me offer this disclaimer.  

Please understand that I do believe that therapy is important.  Ben receives speech, language, and occupational therapy that have been extremely beneficial to him.  He has also participated in social skills "friends" groups.

I know that many of you may have a child that is involved in ABA therapy.  I have even heard that not all ABA therapies are the same.  Some call themselves ABA therapy for insurance purposes but do not practice techniques like this.  I just ask that, for your child's sake, you observe and evaluate carefully.  Read the articles that I've linked above in their entirety and watch for the warning signs the bloggers mention.

I also believe that there are harmful behaviors that need to be reduced and eliminated, especially when the child is causing injury to himself and others.  Hand flapping is neither harmful nor injurious to anyone.

During ABA therapy, children learn the phrase “quiet hands” when they are very young.  When the child hears the words “quiet hands”, they are to stop their hand flapping and drop their hands by their sides.  If the child doesn’t comply, then the adult will intervene and physically still the hands.

I have to wonder why the adult feels the need to eliminate hand flapping.

Is it because the adult feels uncomfortable with the flapping because it doesn’t appear to be “normal” behavior?  If so, what is normal anyway?

Is it because the adult is afraid that the flapping detracts from learning?  If that’s the case, research actually suggests that certain stimming behaviors actually increase focus and concentration, and if they are eliminated, then the person has even more difficulty completing the task at hand.  On a side note, there is also research that shows that eye contact can be overstimulating, and, for some, making eye contact actually makes it harder to listen and pay attention.  Our eyes are not our ears.

Is it because the adult believes that the hand flap serves no purpose, and should therefore be eliminated? 

Ben’s stimming behaviors and hand flaps actually serve several purposes.  First, it is a way for him to express emotions.  Sometimes stimming is soothing, such as when he rhythmically rocks himself to sleep.  When he is filled with joy, his excitement overflows into his hands and they flap rapidly.  He uses his hands to explore his world when he runs his finger along the edge of a wall or strokes the soft surface of a blanket.  Other times he might stim to help him focus in school, such as when he taps his pencil while he's thinking.  Quieting his hands means taking away one of his senses.  Some equate this to duct taping the mouth of a neurtypical (non-autistic) person or taking sign language away from a deaf person.  Obviously in a school setting, Ben's stimming should't become a distraction to his classmate's learning.  However,  I remember from my teaching days that while these types of student behaviors would drive me crazy, the other children wouldn't even notice most of the time.  Should we take away a helpful coping technique just because the grown ups are bothered?

Is it because the adults need to be in control?  There are many reasons why I am opposed to forcing compliance on a child.

ABA therapy “works” because children learn that they will be rewarded for doing what adults want them to do and they will be punished when they say no.   It seems innocuous enough.  The adult places his hands over the child’s to reinforce “quiet hands”.   But when this happens time and time again in therapy, in many different contexts, these children learn that they must comply with what adults say- no matter what.  I believe this sends the wrong message.  Children learn an implied message that the adult never intended.  They learn that they are not in charge of their own bodies, because, one way or another, the adult will get his way.

Too many autistic children have grown into adults and have become victims of abuse because they have learned that adults can have their way with them, because their bodies are not their own. 

As Sparrow goes on to explain,  “You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?”

This is why I encourage Ben to make his own choices.  If he chooses to disobey an adult, there will be consequences, but it will be his choice.  He will always know that his body belongs to him and that he is in control of decisions made about it.  I want to teach him to think for himself.

I don’t care if Ben’s hand flapping makes him look different than his peers.  They already know he is different and, thank goodness, they like hanging out with him anyway.  We are all different in some way.  Different doesn’t mean wrong.

I want my son to grow into an independent, capable, successful adult who is in control of the decisions that he makes. 

I want him to have a strong sense of self-worth.

I want him to know that there is nothing wrong with the person who he is.  There is no need to fundamentally alter the person he is inside. 

This is why I celebrate loud hands.