I am overjoyed that I have my voice. That I can tell you what I want for breakfast. That I can share my knowledge and opinions. That I can make plans and bring fun to others. That I can tell those close to me that I love them.
I was not always this lucky.
For 25 years I could not communicate any of these things. I have never been able to speak to communicate. I tried really hard but was never successful in doing so despite many years of speech therapy. I also tried a primitive PECS system a long time ago, like when I was about 7 years old. I loved flipping the laminated cards and was able to make a few sentences 4 or 5 words long. My Dad worked with me on our first computer when I was about 8 years old. Learning to keyboard was really a big step but he must have thought I was not able to do it on my own because he had to provide support at the elbow for me to be accurate. In school, speech therapists also tried to teach me to use a talker, a speech output device with words and icons on a keyboard. They abandoned their efforts after 6 weeks because they did not recognize I was making slow progress.
I have apraxia and autism and it is extremely challenging to make my body do what I want. I have difficulty doing simple things like washing the dishes and then putting them in the dishwasher even though I can easily remember all the steps involved. I have a hard time making my hands do things, and 2 handed activities are very challenging. I have been working with a personal trainer and an occupational therapist, and the activities they have me do are helping me exercise more control over my body.
Apraxia also makes it impossible to use my voice to communicate my ideas, opinions, and needs, hold a conversation, and advocate for myself. Robust communication is what enables all of us to live fully as social beings. But for 25 years I had no means of doing so. I was depressed, withdrawn, and prone to anxiety and emotional outbursts. I felt that I was trapped in silence forever.
But the absence of speech is not the same thing as being unable to think.
I started three years ago to work with a new speech therapist who read me an essay about T-shirts. Then she asked me questions about the content and encouraged me to respond by spelling my answers, letter by letter, on a stencil alphabet board using a pencil as a pointer. It was very hard work to control my body in this way, but I was able to spell 8 – 10 words that day. I knew then that my chains of silence were unlocked once and for all time.
Now I like to use a laminated paper alphabet board to communicate and still need to use a Communication Regulation Partner to help me regulate my emotions, focus my attention, and read aloud what I write. I need this person, who does not touch me, to hold the letterboard steady and not move it, unless my attention wanders. If so, they are trained to remove the board until I am ready to continue.
It has taken me over a thousand hours of practice to achieve the level of motor control to use my right index finger to point quickly and with precision to letters on the laminate alphabet board so that I can communicate fluently. Now I am starting to use an iPad app with a keyboard and text to speech to say what I want. It also has word prediction keys which speeds up my typing. It is much harder to be accurate because the keys are smaller and much closer together. I am excited by the hope of being able to communicate more independently.
In school, I was not able to work on academic subjects like math, science, history or English because my teachers did not think I was smart. I was tested by a psychologist and my IQ was 39, so no one worked hard to teach me. I hope you can understand how frustrated and despondent I was. I was not given an appropriate education.
There are many students in public schools like me. Thirty percent of people with autism do not use speech to communicate. Only a small portion of them use AAC (Augmentative and Alternative Communication) devices at all, and only very few use it to communicate robustly. Most use it only for expressing wants and needs and simple preprogrammed phrases and not for the full range of spontaneous human expression. Very few are in mainstream classes. There is an entire generation of nonspeaking students who are trapped in silence, unable to realize their full potential.
Schools are failing them miserably. Anyone who looks at the data on outcomes of nonspeakers in schools acknowledges that the results are not what educators, parents and students want. Schools must stop blaming nonspeakers and their apraxia for poor outcomes. Using IQ testing, which requires an oral-motor or eye-hand coordination response, to evaluate students with apraxia is wrong. Its use shunts students to a future that is far below their ability. Students should be in mainstream classes for a substantial part of the school day.
In ways that have not yet been tried, nonspeaking students need intensive instruction in methods of communication including AAC devices as well as letterboards and keyboards. Progress may be slow for some students with more severe apraxia but all have the intelligence to succeed. Recognize that many will need an assistant (such as a Communication Relationship Partner) as mandated by federal law and defined as an Assistive Technology Service (https://www.ssa.gov/OP_Home/rulings/PDF/USCODE-2011-20-USC-1400.pdf) to help them self-regulate and for emotional support. Major efforts for these students must include not only intensive coaching of motor control which is focussed on communication, but also include work with occupational and speech therapists and specially qualified personal trainers to ameliorate the mind-body disconnect. It may take 1 -3 years for them to become fluent communicators. Other students may have less severe eye-hand coordination issues. They may even be already using computers or tablets to play games or do internet searches but have never been coached to use these skills to communicate robustly. These students may take much less time to become fluent communicators. Schools must invest the time, trained staff and resources to assist all of these students so that they can become more productive citizens.
To those who say that I am exceptional, I say that there are thousands of other nonspeakers who, despite the opposition of the American Speech and Hearing Association, have learned to use letterboards and keyboards to communicate, often requiring a disability related communication assistant to succeed. Some no longer need such assistants. Some are successfully attending college and some have already graduated and are pursuing graduate education. I personally find it strange that professionals in higher education have more readily accepted the use of letterboards and keyboards by nonspeakers than elementary and high school staff.
To those who say that there is no published scientific evidence of the efficacy of these pedagogic methods, I say do not close your eyes and mind. The published scientific research that does exist has amply documented the poor results of current efforts by schools to train nonspeakers to communicate robustly. To learn what can work, come spend a few hours in conversation with me or one of my fellow nonspeakers or go online and watch videos of people like me who use these techniques to communicate. This website’s homepage has an example video: https://growingkidstherapy.com/.
To those who say that we do not know enough to try this, I say get started with students and do research at the same time. Physicians taking care of COVID-19 patients tried everything they thought might work while collecting data and comparing notes.
To those who say that students who cannot follow simple instructions or imitate another person’s actions could not possibly consistently point to letters on a piece of paper to express themselves, I say you need to have a deeper understanding of apraxia.
To those who say that “Now is not the time”, I say my fellow nonspeakers will work hard to become communicators. Give them hope!
To those who say it is really the Communication Relationship Partner who is guiding the person spelling to select individual letters, I say that I am insulted by the implication that I am not smart enough to have independent thoughts, coordinated enough to point to individual letters, or determined enough to persist.
School district staff have low expectations for nonspeakers. Efforts to teach communication skills are not respecting individual preferences and abilities. Students should be taught to communicate in multiple ways including letterboards, keyboards, and tablet based programs such as Proloquo2go, Dynavox, and others, to see what works best for each person. Parents must be trained so that the selected communication method is used consistently throughout the day and week. Just as parents help kids with homework, they need to work on the foundational skill of communication.
Schools must take chances in order to innovate. Teachers and speech therapists must admit that their current ideas and methods are not producing the desired outcomes of robust communication, contribution to society, and the ability to live with their talents fulfilled. For the time being, we must all be humble enough to acknowledge that autism remains a puzzle. We must work together so that schools are a beacon of hope for nonspeakers and their families.