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

TouchTalker

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.

TouchTalkerLINK

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.


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?

Handwriting gets in the way of educating autistic students

Why Haven’t They Done That Yet?

This is a post I have been waiting to be able to write. I have been thinking about a problem I see in my classroom and I appealed to the scientific literature to find potential solutions. As such, this is going to be a hybrid post wherein I will describe what I am seeing and how it fits the literature, and then I will appeal to my readers to help me with the solution.


The problem of penmanship

Header

When I came into my 3rd-4th grade life skills/small group autism classroom at the beginning of the year, I immediately noticed the sloppy, apparently careless handwriting from my students with autism and ADHD. I attributed it to lack of practice because of the ability of some of my students to escape or minimize work. With time, however, I no longer believe that hypothesis.

We have been working on writing as a primary focus for the whole school year. We started the year by copying a daily schedule off the SMARTBoard and onto an individual sheet for each student, so they would have access to their own copy of our daily schedule. I thought this was a smart idea because it is a precursor skill to copying items into a daily planner for academic assignments so they do not get forgotten. What I learned was that I was forcing my students to do their least preferred task of all, physically writing for >15 min a day to start the day. This resulted in a lot of bad behavior and meltdowns (not tantrums).

In hindsight, I feel really bad for doing this to them. We switched to daily journal prompts requiring only 1-2 sentence answers and I put the schedule on the front board for perpetual visual access. Once the students relaxed and realized they no longer had to copy down a daily schedule any more, they settled into the groove of writing when I asked them to, albeit they did everything they could to minimize the task demands.

Looking at those writing assignments I noticed something, their handwriting was not improving very quickly. That, and the physical act of writing is clearly aversive to all but one of my students, but I think it is because that students could not care less if their handwriting were legible or not. This got me thinking, what if I used computers?


Sample1
Sample2


Computers helped. The kids will actually look forward to writing stories on the computer. They still have significant difficulty with the creativity side of writing and need a lot of prompting, but it is clearly less aversive. Interestingly, I started to get some really interesting and good work out of some of my students. They went from being unable to write to being able to tell their stories!

Now for the science

My science-ing came by accident. I typed “Autistic Writing Sample” into Google and it took me a research paper that quantified poor motor abilities in writing samples (Link). I then went to Google Scholar and typed in “Writing impairments in autism” and clicked until the results made no sense anymore. I struck a few gold nuggets that my friends on twitter were able to send me by email. They involved studies comparing handwriting of ADHD and autism, ADHD alone, autism alone, as well as clarified the role of IQ, perception, and visuomotor integration in writing as pertaining to children and adolescents with autism. Importantly, they showed that the best strategy to ameliorate a lot of these problems is to just write larger (macrographia), a strategy used by a very large number of individual with autism-and very prevalent in my classroom (the examples above from one student show very significant macrographia).

The most important one that motivated me the most was entitled, “The Introduction of Keyboarding to Children With Autism Spectrum Disorders With Handwriting Difficulties: A Help or a Hindrance?” and is located here (I can get you the pdf by email request). This paper suggested my knee-jerk reaction may be right. They found students with autism were more willing to write and had a better perception on writing in particular when allowed to do so on a computer or word processor like an AlphaSmart or Neo. They did not find a “significant” improvement in writing quality, but that may have been due to the low sample size and p-threshold of p<0.01 for significance (they reported a p=0.010 for quality of writing and deemed it nonsignificant). The points the found important provisos are as follows: students need consistent access (not too little access), stigma needs to be reduced, and they need training in typing or else the whole thing is just too difficult.

So what do I propose

I propose the following. I started a GoFundMe campaign to buy Chromebooks, one for each student I have in my class for the end of this year and in coming years. When there are dedicated computers for each student, I will focus writing lessons on the creative process of writing and they will be able to use Google Docs to complete their assignment. This means they physical act of grabbing a pencil and trying to write out their thoughts will no longer impede the creative thinking that underlies creative writing.

To compensate for the relative lack of typing training my students have had, I plan on starting daily typing lessons to assist them in being able to either touch type or hunt and peck with maximal efficiency. Thus making the keyboard an easy way to get one’s thoughts out and on to the screen. In other words, I plan to specifically teach the technology so that the students feel completely comfortable using it on a daily basis to complete schoolwork.

In addition, I will specifically address penmanship/handwriting issues as a separate component of the class using handwriting worksheets (like these) and iPad apps like Wet Dry Try. This will help the students understand how to write each letter correctly as well as giving them the practice they need without having to simultaneously be creative and write with a pencil at the same time. I hope this type of practice will assist the students to automate the mechanics of writing and solidify the sequences of motor movements so they do not require so much concentration as to distract from the writing task at hand and make the whole thing tortuous.


In summary, I want to help my students succeed in school. To do this, they need access to technology on a consistent, reliable basis. This means more than just the 1-2 computers in a classroom or 1 hour per week in a computer lab. I have started a fundraiser so I can afford to place a Chromebook in the hands of each and every one of my students. I honestly believe this will bring their dreams closer to reality, and let some of them access the general education curriculum. Please, please help. Any little bit will make a huge impact. Thanks.