COMMUNICATION IS MORE THAN WORDS

Português

Today’s author is Cristiana Giulia Calderan Bell. She was diagnosed as Austistic when she was 41 and she also has a son in the spectrum. Bell’s blog is called Sonnolenta… A Neurodivergent Journey and you can find todays story in it’s original version here.

This is an interesting piece because it goes a little bit against the idea of early intervention. In fact, one of the most important messages that Autistic adults have been trying to convey is that there isn’t as much of an intellectual deficit, even in the so-called more severe cases of autism, as it was thought. The main issue is a difficult connection between what the brain wants to do and how the body responds, besides the sensory integration issues, of course.

Consequently, according with these adults, It is necessary to rethink the way Early Intervention has been thought and executed. And also, rethink the school practices in general.

Also, check out the beautiful pictures all over her blog!

 

Communication is more than words. It’s feelings, movement, emotion and so much more…

Cristiana Bell

Words have not been forthcoming to me lately. Verbally spoken words, in particular.  I feel stuck in between days, as scattered as the leaves blowing past my window. I feel overwhelmed about writing, because so much is at stake. My words have to make a difference. Collectively, our voices at some point have to be heard.

We (every single Autistic adult I know) want so much to be understood and seen as valuable voices of experience and advice for parents of Autistic children. We don’t want the next generation of Autistic people to grow up as so many of us did (or didn’t) whether we were diagnosed (or misdiagnosed) or not. We want better. We know we deserved better, but there’s no use crying over spilt milk, so we passionately endeavor to reach out to the adults currently parenting Autistic children. But the sad part of this is that most of these parents want nothing to do with us. They say we are not like their children. They insult us with ableist comments. Some make threats. Their words are cruel, and they hurt. They say, “the fact that you are even capable of typing means that you are not at all like my child. My child will never speak, My child will never type. My child will never (insert anything here- they truly believe their child will never do anything)”.

I watched a video today, that one of my Autistic friends had shared on Facebook. It was a video of a young Autistic girl being forced to try to say “Momma” via compliance-based therapy (aka ABA). It horrified me. I read the comments on the youtube video, and it was all about people praising the Mother for her vigilant efforts. But all I saw was a frightened and tormented little girl, who was in pain… upset. Every single thing about her body language, expressions, and verbalizations was saying, “please stop, this is scaring me, it’s hurting my ears, I want it to stop!”. The entire time, Mother and another voice off camera are trying to force her to sound out the beginning of the word “Momma”, loudly and repetitively saying “MMMM MMMM MOMMA MMMM MMMM MMMM” over and over and over again, while essentially teasing the little girl with a piece of candy. They were touching her face, and arms, and forcing her to be in close physical contact when she clearly didn’t want to be touched. As I watched it, I felt like these adults thought she was purposefully not saying it, as at once point, one of them said, “You can’t give in to her”… as if her not saying the verbal sound they wanted was done on purpose. Another part of me became angry. I couldn’t believe a Mother could be so selfish as to put their daughter through this simply for the satisfaction of hearing the word “Momma”. Yet another part of me was irate that a parent would put their child on the internet like this, violating their privacy and exposing their most vulnerable moments. And still another part of me felt broken hearted for this little girl, and for all Autistic children like her, who are being traumatized with compliance therapies.

Not being able to verbally speak doesn’t mean that a child is not communicating. This little girl was completely and effectively communicating her feelings in the video. To me, her communication was so obvious that I felt enveloped by her pain and fear. I simply can’t understand how a parent could not see that- and believe me, that’s truly ironic given that I am Autistic and “we Autistics” are supposedly not able to pick up on cues such as body language and anything that isn’t obvious or literal.

Let me tell you about my Son. He didn’t speak “intelligible” words until he was four. By “intelligible” I am referring to “words that people other than myself could understand”. He made all sorts of sounds, but very few words. Regardless of this, what he was “saying” was always clear to me. I had no trouble understanding and communicating with my Son, but other people apparently did. At the time, I couldn’t understand why people thought there was such an issue with him having supposed delayed speech, or a speech impediment, or his being developmentally behind other children in his preschool class being an issue. I was (at my Mother’s behest) sending him to a Montessori school, and according to their teaching methods, it was all about each child’s individual abilities and allowing them to progress at their own pace. Imagine my shock when they told me that my child was a disruption to the flow of the classroom. That his need for long naps, help with his lunch, or help other things throughout the day were a “disruption” to them. That his needing a comfort item (a blue bunny he always carried) was a “disruption” that was not allowed. I found out that they had been confiscating his bunny each morning after I dropped him off. This of course resulted in his having a complete meltdown every morning, and being then exhausted and understandably cranky for the rest of the day. He would need a longer nap than they allowed, and this was “disruptive”.

You know what? I finally got tired of what people were telling me about my child. I got tired of a school that preached one thing, and then did the exact opposite. I wasn’t going to stand there and listen to people that wanted me to put my child into all sorts of programs for speech when I could understand him perfectly well. One morning after dropping him off, I didn’t go to work. I turned around, parked my car, went into the school and found my Son, sitting in the middle of the classroom floor, sobbing, rocking back and forth, bright red from crying, his little face and clothes soaked with tears. I picked him up, I got his bag, I demanded his comfort item, Mr. Bunny, be given to me immediately. We walked out of that school and never went back.

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