Photo: My son and I making funny faces for the webcam. When he was little, he would sit at the computer and take hundreds of pictures making different faces and doing things with his hands. He loved to sit with me and do the same!
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.
The school claimed that since my Son could not communicate what he needed with words, they just let him sit there crying, wailing or screaming… and ignored him until he fell asleep from exhaustion. This all bewildered me, because when I was at home with my Son, I never felt at a loss to understand what he was trying to communicate to me. I always grasped what he needed, whether it was through his body language, facial expression, a particular type of cry, hand gestures, emotive sounds, or a combination of sounds that he made, blended together with words that he did know. All of these things served well to communicate his needs to me. I never felt the need to force him to say exact words. In many cases, he had his own words for things, and I knew what those words meant.
Today, he does speak. Eight years have passed, and all of those people who were up in arms about his delayed speech and speech impediment can bite their tongues, quite frankly. I never forced him to speak as others might have demanded of him. I refused to allow him to be in a preschool situation that in my opinion, was borderline abusive and neglectful (I’m looking at you, Montessori school!). I eventually found another preschool for him, and he didn’t step one foot into it until I had spoken in depth with the owner and the teachers. They were wonderful, willing, and eager to be a safe place for him. And they were. I observed him there, many days… happily moving from activity to activity, with the comfort of his bunny under his arm, able to take naps as long as he needed, getting the help he needed with his food and other tasks. No longer under pressure or traumatized by his environment, he was happy. He started to say more words and interact more. Eventually, he no longer felt that he needed his bunny every day.
I realize that my story is just that- MY story, and my Son’s experience. But I feel that he’s a perfect example of a child who could have ended up being forced to endure the trauma of compliance-based therapy to force him to speak as people’s demanding expectations do to so many others. My Son eventually did begin to speak, but it was entirely on his own terms, his own timetable- nothing to do with what was “expected” at a specific age. I was used to him being “behind”, as he was a preemie, born almost two months early. He didn’t do anything that he was “supposed” to do at the specific age doctors have listed in their ledgers. He didn’t lift his head, roll over, crawl, or walk when he was “supposed” to, but he eventually did. And it never bothered me, or worried me that he wasn’t doing those things when other babies were. I always felt that since he was born so early, that those things didn’t apply to him. There is so much pressure for new babies and young children to meet these developmental milestones and to “be normal” that I feel like it makes it that much more difficult for new mothers to enjoy time with their babies. They’re always watching, waiting, comparing and worrying!
Your Autistic child might not speak using verbal words today, but they are already speaking to you in so many different ways… you just have to open your eyes to all of the possibilities, and remove the onus of expectations and normalcy from your vocabulary. Enjoy your child. Love your child. Allow your child to grow at their own pace, stop demanding, expecting, comparing and stacking them against others. Without that pressure, and without demanding expectations, you never know what is possible. Your child may eventually speak with words. Your child may eventually speak using other assistances. But your child is already communicating with you, and by opening yourself up to alternative modes of communication, you’ll be learning and connecting with them.
On the day of my Son’s graduation from Kindergarten, they had an awards ceremony. I sat in the circle with my boy, watching the teacher read off awards, worried that he’d be upset if he didn’t get one. She read them off: best handwriting, perfect attendance, best artist, best reader, best behavior, best best best best best… and my Son’s name was never called. She called his name last, and his award… I think it was the best award of all, for she recognized in him what so many other teachers at his previous school couldn’t. His award was for “INDOMITABLE SPIRIT”.
Photo: my boy on his first day of Kindergarten, with his little squirrel stuffed animal (comfort item that was agreed he could carry to school), and carrying a new black and red backpack almost as big as him!