Turning disadvantages into advantages

A Personal Aside

I have been thinking about communication in autism quite a lot lately (see my Go Fund Me project). I think we often sell people with autism short with regards to their communication and we often do not give them the credit for wanting to communicate with the rest of us. The point I’ll be making is that they do want to communicate, often emphatically, but that their communication might be in a different form than we are used to and we need to work harder at trying to communicate with people with autism.

I also have been thinking about how important it is that we teach children with autism how to type as well as providing speech services and OT for handwriting skills. Being able to type opened life up for my brother like nothing else would have been able to.

To explain my thought process for all of this and how these two disparate thoughts connect, I will go through the story of my late autistic twin brother’s struggles and resounding successes with communication. Hopefully you will also get to know Kyle a little bit better by the end of this post.

So how does a nonverbal autistic child communicate?

I wonder about this question because Kyle and I were partners in crime. And my parents are not sure exactly whose idea most of the nonsense actually was! I threw Cheerios on the green and gold shag carpet in the living room and Kyle stomped them good! Somehow Kyle and I got him put into the wood burning fireplace in the living room and I was smearing him with soot when mom caught us. I also went out to the garden and picked some green watermelons, “accidentally” dropped them to open them, and Kyle and I sat outside at a table with spoons and munched away. How did we coordinate this? I think at some point my mom learned that both Kyle and me giggling probably meant we were up to no good.

That gets to my question: How was Kyle communicating with me? How did we come up with these super-fun plans? I still don’t have an answer.

I remember Kyle learning communication skills at CBTU (now the Carmen B. Pingree School for Children with Autism in Salt Lake City) using a felt board, sign language, and verbal speech presented simultaneously. I never truly saw Kyle connect with the felt board. He seemed more interested in words and books/magazines he saw around him. This was important and we should have recognized it earlier. Kyle gave us early signs he loved the written word. When he was being tested to enter CBTU, he was rewarded for good behavior with access to magazines. He would flip through and it was clearly rewarding. When he was told to give the book back, he flipped faster and faster. When it was taken away, he latched on the cheeks of the teacher with true anger. He wanted to see those words. At the time we did not understand how deep Kyle’s connection with words really was.

While Kyle was at CBTU, I distinctly remember picking up little snippets of sign language to help talk to Kyle. I would steal glances at my mother’s sign language books to see if I could learn it. Kyle never really seemed to connect with sign language though. I think it was because it was just plain easier for him to grab my hand and show me what he wanted rather than to try to make me understand through sign language. Kyle also never had patience for people trying to make him say things “right” to get what he wanted or felt he needed. He would just want to get straight to the point. All the way to the end, Kyle did use sign language when it was faster than typing. He asked for someone to help him get a drink or to use the bathroom using sign language. He would say a very lazy “yes” or “no” because it was easier than shaking his head (interesting trivia, when Kyle was mad at me you could hear the snap of his fingers when telling me NO from the next room). In hindsight, it had to be extremely frustrating for Kyle those early years having to try to communicate with us in his wordless world. We just were not understanding him the way he needed us to.

My family literally gave Kyle the gift of speech

When Kyle was 5 years old (this was 1986 for those keeping track) my family took it upon themselves to purchase Kyle what he desperately needed, a machine to let him “talk” to us. They bought him a Touch Talker. It weighed a ton and was super clunky, but it immediately changed his life. I vaguely remember that there was a function for pre-canned phrases (Minspeak) that could be selected based on the pictures on the keyboard. I also remember Kyle didn’t like that very much. He seemed to have either more or more interesting things to say than those programmed phrases would convey. One day when he was 5, the Touch Talker was left on spelling mode and Kyle typed “Iwanttogooutsideplease”. My mom took the initiative to teach him that there are spaces between words. He never turned it back to the Minspeak functions, ever. Never. He just wrote. The words just started to come out. He was only 5! He had only used the Minspeak function for slightly under 3 weeks. He loved words too much. So he started spelling and we (read: mom and dad) nurtured it. He loved typing so much he wore out the keyboard overlays multiple times. In the end, he didn’t need them. He knew where the letters were.

My parents bought Kyle that first Touch Talker while he was at CBTU. He then got a replacement that was not quite so heavy in 3rd grade. This was nice. In 7th grade, Kyle got a laptop, with the thought that he could both talk and do school work with it simultaneously. Kyle was not impressed. He was not able to simply turn it on and immediately start talking. He had to sit and wait, so my family invested in a LINK for Kyle. Now this was lightning fast and light as a feather. This one was Kyle’s favorite and the one he stuck with until he passed away. He got an “upgrade” of his LINK in senior year of high school, but again, it would not turn on fast enough. When Kyle wanted to talk, he wanted to talk, immediately. So he went back to LINK. Even though by this time the “e” was completely worn out and the delete button was dead. It was his voice and he clung to it until the end.

I honestly believe Kyle learning how to type literally changed his life. It allowed him to connect with words. It let him spell. It let him talk to us using his words. It was the pivotal moment in his life that changed it for the better. Even as a little kid I remember Kyle’s hands moving ever quicker along the keyboard as he expressed his thoughts. And even better, Kyle now had a voice. To this day when I think of Kyle I actually hear his humming (much to my chagrin), but his voice is from his LINK and Touch Talker. They were part of him.

Kyle’s communication

My wife said something interesting to me this morning. Upon reflection, she never really noticed that Kyle was nonverbal. This is not a stretch to believe because I have a very quiet father. If there is no reason to talk, then he doesn’t talk. Kyle was the same way. As my mom said this afternoon “[Kyle was] not a man of a lot of words until he wanted something, then he would explode with words and wants.” This is a great description of Kyle. He just went about doing his thing, but if he ever had anything to say, he would make sure you heard it. I remember getting bopped many times by Kyle when I was not paying attention or tried to wander away before he told me everything he had on his mind.

In hindsight, there were times that I forgot Kyle was using a computer to speak for him. I remembered when I realized I had to go into the living room to “hear” Kyle talk to me. If it was really important, he walked out and dragged us in to the living room so he could tell us what he wanted-and he made sure we listened. We always had his touch talker or LINK sitting in the living room. We grew up with a Touch Talker on the end table by the couch. After Kyle got the LINK as an upgrade, it lived on the piano in the living room, and later a table that replaced the piano. One of the coolest features of Kyle’s communication was that he almost talked faster than the rest of us. That is because he typed so fast. His LINK was able to keep talking at a normal speech cadence as he let his thoughts out, it was remarkable.

The most amazing thing about Kyle being able to type at normal speech cadence, was that he only typed using four (occasionally 6) fingers, his two index and two thumbs and when he needed speed he used his two middle fingers. He was completely self-taught and was able to type 130 words per minute (no errors). He also reflexively understood how to spell words. Even medical transcription was not beyond him. He just knew how to spell. He always had.

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The more broad thoughts I’ve had lately is how researchers, school districts, teachers, and aides cling to fixed expectations for how people with autism should be “managed”, educated, and in general behave. I’ve always wondered how the CBTU evidence-based methods of using a felt board, sign language, and verbal speech presented simultaneously may have actually delayed speech and communication commonly seen in children growing up in a bilingual household. Kyle, from a very young age, was clearly telling us how to communicate with him, but it seemed like everyone around was focused with a fixed mindset of what’s expected, what’s normal, what has to be, until my parents thought outside the box and purchased Kyle a Touch Talker. This reminds me of the Star Trek, The Next Generation episode, “Loud as a Whisper” where the theme was learning how to turn a disadvantage (Riva who is unable to communicate) into an advantage (Riva is forced to teach sign language to two warring tribes and as a result everyone will hopefully learn to work together). Kyle was teaching us what he needed, we weren’t always willing to learn.

In my experience, individuals are often too quick to presume what is always in the best interest for children with autism. They’re quick to judgement. However, judging a child with special needs doesn’t define who the child is, it defines the person doling out judgement. It would have been all too easy to presume Kyle was stupid, because he didn’t speak. But anyone who made that perverse presumption was dead wrong, as many school teachers found out when they tried to accuse Kyle of cheating in school by letting the aides complete his work. Throughout his life, people tended to talk “at” Kyle and did not so much engage in communication “with” Kyle. As I’ve blogged before, I’ve been guilty of having wrong presumptions about Kyle. Because I’ve made these errors in the past, I’m more sensitive to not allowing my initial impressions or the rumor-mill gossip about a student cloud their true personality. Labels like, “this child can’t talk, he/she must be stupid” only gets in the way of genuine communication. Children with autism are often being very explicit about what they need, much like Kyle was. They are communicating; are we willing to grow and learn from them? Are we really listening?