Sunday, April 12, 2015

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.

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