D is for Defiant

I was “that child”. My behavior was called defiant, obstinate, naughty, contrary, difficult, spirited, lazy, overly emotional, giving attitude and unaffectionate. There was a whole shelf of books on my Mom’s bookshelf dedicated to my “defiant behaviors” and parenting books with strategies to end my tantrums and meltdowns. My parents even went to parenting classes and truly tried their best to help me. They even often used positive reinforcement and praise, but the negative words just stuck with me, because they were criticisms of who I was. Criticisms of behaviors I had little to no control over. 

I had heard those words so many times. I even grew to take pride in my behavior, my “attitude”. No one could understand me, so I embraced my defiance. Defiance became part of my identity. It helped me to feel “tough” because I felt so weak and out of control because of my impulses. My body and mouth would do and say things and I had little control over my big feelings and emotions. I was so overwhelmed by every thing and every one in my life so I sought out the only control I had. Defiance. It meant that I was finally unbreakable. It gave me a sliver of strength in a confusing and uncontrollable world. 

Identity of self is formed early on by the social interactions we have. When Autistic children have negative or critical interactions based on their “behaviors” and are told that their attempts at communication are wrong, that affects our lifelong identity. 

The behaviors that ABA therapists and other autism professionals love to observe/cure/fix/extinguish? That’s NOT autism. Everyone uses behavior to communicate. 

Let me say that again. Behavior isn’t Autism. 

Behavior is communication, and everyone uses behavior to communicate. Someone who is autistic may use extreme behaviors to communicate because the adults around them aren’t recognizing or understanding a more unique communication method (what then gets labeled as defiant behavior). 
For me, it started out innocent because there were things that I couldn’t/wasn’t able to do. Every time I was told I was defiant, and behaving inappropriately, the more and more I began to view my feelings and emotions as invalid, inappropriate and wrong. I learned to hold my emotions inside, and not share them with others because I was criticized and punished when I expressed them. 

When I was 3 years old, I went from being a good eater to a picky eater. Suddenly, there were only a few foods I could eat due to taste, smell or texture issues. It literally caused pain and hysterical crying meltdowns when simply asked to try a new food. 

At first, my parents tried out what most parents are told to do. So one night they tried to wait me out. I used to eat broccoli as a toddler, so they didn’t understand why suddenly I refused. So I sat at the table. For hours, crying and only able to say “I can’t”. I went to bed hungry that night. The broccoli was placed in the fridge and I woke up the next morning and it was brought back out for me to try. I was still unable to eat the broccoli, and I sat at the table crying that morning until it was time to leave for preschool. My parents never tried that strategy again. And I was defiant. 

When I was 4 years old, I went out shopping with my mom, and I waited for her to shop, and when the buzz of the fluorescent lights grew painful and the store music was too loud I would climb in between the clothes and hide in my little safe circle of colorful softness. My own safe cave. And then my mom, realizing I was gone, would start calling out for me, and it was funny. The pitch of her voice hit this mark where it cracked with panic and for some reason it was hilarious. I couldn’t put myself in her shoes, because I had never lost someone I loved, so the next time we went to the mall it happened again. And again. And it didn’t matter what punishment I was given, what toy that was taken away or how long I was grounded. The next time we went to the store and I got overwhelmed by the people and the lights and the sounds, I would hide in my little clothes cave. And I was defiant. 

At preschool, I couldn’t lay still on my mat during naptime. Every time I moved or whispered to myself I was told to “stop moving, be quiet.” And I couldn’t physically stop myself. I tried so hard. Naptime was 2 hours long every day. It felt like forever. And I was defiant.

In 2nd grade, we were taking a test, and I got distracted by a noise and I looked over. My name was immediately yelled from across the room, and in front of the entire class, it was announced that I was a cheating off of someone else’s paper. I was then told that I was not allowed to move my eyes from my paper. And I was defiant. 

When I was 7 years old, I was expected to be able to clean my own room. I had been taught the skill of cleaning up after myself, so it seemed logical that I should be able to clean my room. I would sit in the pile of my messy room and unsure where to start, I would see a book, and when my mom returned to check on my progress at cleaning, she would find me reading and tell me to “get busy and start cleaning”. So I would put the book on the shelf and next thing I knew she was back, and an hour he gone by and I was just sitting in my messy room reading the next book I had found! And so it went on for hours. And then I was yelled at for wasting the day, for not doing my chores, and punished. And I was defiant. 

In third through 5th grade I was told constantly to “stop talking in class”. I often would bite my tongue (literally) to try to stop my voice. To this day, I have teeth marks ingrained in my tongue from those 3 years spent “biting my tongue”. At recess, I was given sentences to copy and for 3 straight years I don’t remember getting more than 5 minutes of recess per day because I was so slow writing 150 sentences. I will not talk in class. I will not talk in class. I will not talk in class. I remember my fingers cramping. My mom never knew why I cried every morning on the way to school. I was defiant. 

I was an only child, so if something got broken or damaged there was only me to blame. When I was 10 years old, my parents found a stain on the carpet and asked me what I did. I told them honestly that I didn’t cause the stain. “But who did then?” So I was put in time out in the corner by the front door until I confessed. I stared at that doorknob for hours and counted the individual carpet fibers to pass the time. Every time my parents came to check in and see if I was ready to confess, I would cry and tell them the truth. Over and over again. The truth was not enough. And I was defiant. 

As the day grew to a close and the daylight slowly disappeared my parents continued to ask me if I was ready to confess. I could not confess to something I did not do. Once it was dark and my parents turned on the lights in the house, they looked again at that carpet stain. It was gone. It had just been a shadow. Their remorse was intense and they apologized profusely. 

But that day has lived vivid in my mind from that day forward. I became defiant. And defiant meant to me that I was now a harbinger of truth and that I could never be swayed again from telling my truth. 

Defiance that day became the sword I would forever after be willing to die on. 

I then knew my strength. Truth and justice was strong. And unweilding. If I felt like I was justified in my actions, I could outlast any punishment, I could smile through any spanking and never show any sign of weakness. 

It hurt, because I felt so alone. I had become outwardly stone faced, but still scared and weak inside. All I wanted was to feel loved and valued for who I was. But I couldn’t share. I couldn’t be me. Because I had become the word that was used to describe my “behavior”. My body was shamed for moving, my mouth was shamed for talking, and my meltdowns were shamed for being childish. All of my methods of communication were invalidated and so I began to stop expressing my emotions. 

So I studiously began to control my movements, and at school I could hold it all in and behave. It felt like I was constantly on the edge of exploding. My body felt tighter and tighter as my muscles clenched seeking control. Just so I could stop being criticized. Stop being punished. Stop Being outwardly. All of my being; my heart my soul turned inward. I had no outlet, no safe space out in public. 

The feeling of tightness would increase and by the time I got home from school, I would be so exhausted from keeping it all together, I would meltdown and cry or scream. All the hateful words I thought and felt all day trying to not be defiant. They would come pouring out of me. “I hate you! I hate you! I hate you!!!” Every day my mom had to endure these words. She took it personally. But although it was said to her, It wasn’t the truth. I didn’t hate my mom. I loved her very much. 

But I had so many feelings and needs and wants and desires that I couldn’t express, that I couldn’t hold it in. My mom was the one person who I felt the most safe with, and the rush of emotions always came out as hateful, defiant behavior. Then with the release of emotions came the sadness and tears. Because my hateful words cut deep. And I felt shame that I couldn’t stop those words from coming out when I was disregulated or upset.

I felt such huge shame for not being the loving, affectionate person I wanted to be. My body and my mouth didn’t do or say the truth in my heart. Such a juxtaposition was impossible to reconcile as a child and young teen and it just hurt.

I became a docile and incredibly awkward teenager. I felt so uncomfortable in my own skin, and although I would still have meltdowns at home, I became more “typical” in my behavior publicly. No one knew the struggle of life at home. 

But Defiance as my identity also pushed me forward. It fueled my passions. I loved classical music and piano but due to my severe ADHD, I struggled to focus enough to spend the time needed to become a skilled pianist. But I was defiant.

Piano teachers told me that beginning piano lessons at 11 years old was too late. I defied them and practiced more hours. At 16 years old, when the admission officer at the college I wanted to attend, told me that my SAT scores weren’t high enough to get into a four year college, I defied them all and put all my hidden feelings and emotions into the music I played.

I had no other outlet for my intense and misunderstood feelings, so I played. All the other scholarship applicants had 10 years of piano lessons and training. I had 5. One of the teachers laughed at me and said that I could audition, but “don’t get your hopes up.”

And I went to that piano audition and was told that I had more “feeling” and “expression” than they expected from a student who had only played for 5 years. I not only got the full piano scholarship. I got double the amount of money they usually offer. And that scholarship earned me entrance to the four year college I wanted to attend. 

So I reclaimed that word that had negatively impacted and defined me as a child. Yes, I was defiant. And defiantly awesome. And I began to slowly learn how to accept myself and my unique way of experiencing my world in a positive way. 

As an adult, I do currently have the skills to hold down a job, have a conversation with other adults and children, and I don’t have stims that are distracting to others when I’m out in public. 

But Autism doesn’t end once you learn some social skills, extinguish behaviors and you can “pass” as normal to other Neurotypical adults. 

They haven’t seen me during a full blown meltdown tantrum. It’s seriously not pretty when an 35 year old adult tantrums like a two year old. 

They don’t know that I can only wear a limited selection of clothes because of my sensory aversiveness to textures, tags and seams. 

They don’t see my daily struggle with executive functioning skills and that I can’t get my credit score up because I can’t figure out how to consistently pay all bills on time. 

They haven’t experienced the autistic inertia that often stops my body from doing an activity I desperately want to do mentally but my body just won’t move or when it moves it feels like tires going through mud two feet deep. 

They don’t know that my writing skills are in the 95th percentile for adults with a Masters degree……but my reading comprehension skills are STILL only at the second grade level. 

They don’t see that I have ADHD which makes focus and concentration a huge task.

They can’t feel that I have synesthesia and sensory processing disorder and that my senses assault me non-stop with irritation and pain.   

They can’t hear or see how my auditory processing disorder makes every conversation extremely exhausting and all the extraneous noises in my environment painful to my ears.

For parents and teachers and professionals working with Autistic children:

As children, we just don’t always have the words ready at hand to convey our wants needs and desires, and so we do the best we can in each moment. And sometimes our communication is through actions and movement and aggression and is not pretty. 
But it is the best we can do in each moment.
I share all of this to parents and all those who work with autistic children because your responses to us matter, and your acceptance and love for us, it matters. More than we can express through spoken word or action.  

Please understand that autistic children don’t go out of their way to scratch or bite or hit you. This only happens if we feel like there is nothing else available in that moment to make it clear to you what we need. 

And sometimes our bodies just don’t cooperate. Sometimes we get upset and our bodies move or impulsively react before we have a chance to stop ourselves. 

If you as the adult don’t listen and validate those feelings, then emotions become bottled up. Which is then seen and experienced as explosive behaviors.

Its devastating emotionally to be punished for a “behavior” that you don’t have physical control over. 

Having communication negatively viewed as “defiant behavior” causes more emotional damage, PTSD and trauma than neurotypical people can possibly comprehend. 
Because we are just like you. We are human. We want to be loved. We need our physical needs met and we want things and stuff just like every other human. 
We are only defiant when you label our behavior. Accept our behavior as communication and strive to listen and help us process our emotions. It is overwhelming and hard for us, and we may shut down or meltdown. Strive for understanding, acceptance and love above all.  

Don’t walk, Take a seat.

Walk in my shoes?! I could never ask you to go through something so horrifically untoward.

My daily struggle to physically get my body to move every moment of every day, what you do so thoughtlessly.

The mental struggle to get my thoughts to stop spinning long enough to communicate and then watch them spin again knowing I didn’t express myself effectively and convey even the gist of who I am to you.

The time I spend bound to my bed because I am so overwhelmed with anxiety and so exhausted from talking to you yesterday, the day before and the day before that.

The feeling of digging my nails into my body. To rip the skin off my body just to find some brief relief from being me.

Toxic, Chronic

Panic, Manic

Crazy, Lazy

Those words you call me

Hell, moment by moment

I don’t understand

Understand?

Until, I find

Relief, knowing it’s not just me.

It is

Just Me.

Me. Myself.

Not I, say you.

Turn down the music

It’s Loud? let me turn it up more, say you.

Your hugs they are too tight

Come here, give your uncle a hug, say you.

Why are you staring?

Why don’t you look at me, say you.

I need more space

You’re too sensitive, say you.

You’re not

autistic

enough

too high functioning.

I function?

What a beautiful dream

Once upon a…

Yes I, yes I

All the chaos

All the drama

All I need?

To be allowed to be me.

Tell me it’s all ok.

Can anyone

simply

tell me it’s all ok