Category Archives: nonverbal autism

Disney Characters No More

Below is a brief memoir I wrote for Edlyn Pena’s new book of short memoirs by autistic typers called Leaders Around Me.

My story is probably similar to many in this book. I was not able to demonstrate my intelligence for many years in spite of extensive therapies of the usual sort, primarily ABA, speech and OT. I have written a great deal in my books and my blog about how awful these years were in so many ways. The issue was not kindliness or earnestness because the many therapists and behaviorists who entered my life were usually chipper and cheerful, like a bunch of Disney characters. It was part of the therapy, to be perfectly honest. They were chipper and cheery while flipping flashcards in repetitive drills that numbed my brain with boredom.

It is recommended in ABA to give 40 hours a week of this stuff. “Touch your nose!” “Touch table!” “Touch apple!” “No, try again!” “High five!” The artificial simplified speech, plus the boredom made me terribly frustrated, but that wasn’t the worst of it. The worst of it was that these drills were a waste of time, effort and emotional energy, not to mention money. I started just before my third birthday and finished when my team refused to believe I could understand and communicate at the age of seven. That is a lot of “Touch your nose!” commands.

The problem was that my earnest educators taught me like I was kind of a thick toddler who didn’t understand words. They were totally wrong in every respect. My disability is not a receptive language problem nor a cognition problem, which all my instruction was designed to fix in tiny increments. Rather, my understanding was excellent and my intelligence I hope is above average. I know you have read this on page after page already. It’s not cognitive. It’s motor. I couldn’t show my intelligence because I was internally trapped by a motor system that had trouble getting messages from my brain. To be drilled endlessly like I described was psychologically harmful, especially during the circus of supervision when I performed my drills like a trained dog.

The big day came when I was seven when my mom learned to trust her own observations and ignore the ABA geniuses who figured “Touch your nose!” was good enough for me. I have written much about how she realized I could communicate in my first book, Ido in Autismland. But let’s just say that her determination and decision to fight on, though the experts thought she was nuts, changed my destiny. My father changed it further by insisting my skills had to be independent. And somehow we found Soma Mukhopadhyay, mom of Tito and inventor of RPM.

To make it clear, the process of learning to motor plan for communication is hard work and requires skilled instruction. Only fools and ideologues believe otherwise. Gradually I learned to type my thoughts independently on a letter board, keyboard or tablet. This means I express my own thoughts and move my own arm without being touched. It does not mean I need to be alone. The presence of a good communication partner helps us to organize our motor systems. It is pretty obvious to those who understand motor system challenges but utterly baffling to experts who deny motor issues and persist in telling people with autism that they don’t understand words.

By middle school I was a full time general education student. I was still autistic but I heard normal lectures and I did the same schoolwork as everyone else, earning excellent grades. I had my aide to go with me and with her help I accessed the general education world. In this way I graduated high school with honors, the first, but not the last, autistic student in my middle and high school to do so. I felt like I was an ambassador showing what is the potential of nonspeaking autistic people.

But I suppose my true impact is in advocacy. I have written two books on autism, contributed to others, blogged, delivered speeches and been featured in the media. My goal is to spread the truth. I wrote Ido in Autismland in middle school and high school. I had to correct the misconceptions about autism, to explain the symptoms, to speak out. And the book has surpassed my dreams. It is used in university classes, sells throughout the world, has inspired others to communicate and has been translated into several other languages.

I recently published my second book, a novel called In Two Worlds. It is a work of fiction based on true life and I hope will reach an audience beyond the autism world. It tells the story of Anthony, a boy with autism who can’t talk or show his intelligence. The reader is invited to experience his two worlds, his inner thoughts and sensory experiences, and his outer world of therapies and frustrating misunderstandings. But it is more than that. Anthony learns to communicate at 16 but his professionals don’t welcome the change with open arms, to put it mildly. The book invites the reader to get into the experience of living in Autismland.

My mission and projects are still unfolding. The future chapters of my advocacy and educational work yet to be determined. Thanks to communication, I will be the one to choose what they will be.

The Autism Experience Challenge

You work with autistic people.
You have an autistic relative.
You are adventurous and into new experiences.

If you fall into any of these groups, my Autism Experience Challenge is for you.
Of course, I specifically invite the participation of the experts of ASHA and other organizations that have so strongly made statements about the inner experiences of nonspeakers, yet have never experienced the state of being nonspeaking themselves. Certainly, to claim to have an understanding into nonspeakers, it helps to walk in their shoes- even if just briefly, to avoid the appearance of presumptuousness.

If you are brave, let’s give it a go.

Step 1

Mark out a period of time- anywhere from 3 hours for a shortened version to 3 days for the fuller experience. You will not be allowed to speak verbally during this time, no matter how much you want to.
You must designate this time to take place when you will be around people. There is no benefit to this exercise if you will be alone the whole time. Your friends and relatives should know what you are doing prior to the exercise so they aren’t worried and can do their part in the challenge.

To be authentically true to the autistic experience I need to deny you alternative means of communication. You cannot gesture, point, write, type or show ideas on your face. To have an authentic experience, people will have to guess your needs and wants. Maybe their guesses will be wrong.
You cannot correct them. You must live with the results of their guesses.

To experience this kind of frustration and loneliness is important. You must eat with people and be physically together with people but you cannot join in their conversation at all.
You are near others, and may lean on them or hug them, but you are not part of the social interaction.

Step 2

Some of you may be ready to quit right here, but for those ready to forge on, let’s make it a bit harder.
You can start this any time by prearrangement.
Ask your friends or relatives to discuss you, your behavior and difficulties, in front of you, as if you don’t understand. They can say whatever they want, whether true or outlandishly wrong, and you can’t correct them. You must stay silent. No gestures or facial responses are permitted to show your feelings.

You should take note of how you feel.

Step 3

Every time you feel upset, maybe, for example, after hearing people discuss your behavior, or you feel excited, or perhaps bored, you must flap your hands, stomp your feet or jump up and down. These responses should begin after approximately five or more hours of just experiencing living in silence.
Tell your friends or relatives to respond each time you flap, stomp or jump with any of the following types of phrases:
All done
Hands down
Hands quiet
or
Quiet hands
No jump
Feet quiet.

Step 4

After a minimum of 6 hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, no more normal speech aimed directly to you.
They may speak normally near you when talking to each other in lively and interesting conversations and you may listen but not participate in any way in those conversations. They may speak about you in normal speech.
But if someone speaks directly to you it must now be in simplified speech and command oriented.
Wash hands
Go car
All done
Turn off

Etc.

No articles or grammar for you! This must continue until the challenge ends.

Step 5 (for the very daring, only)

I can’t induce sensory highs but I can help you simulate overloaded or intoxicated senses. Prior to the challenge, you can make a recording of intermittent noises, such as a leaf blower, a siren, a baby crying, and listen to these through headphones while you walk through a crowded mall or market. The sounds pop up randomly and unexpectedly. Several may occur in succession, or you may have none for many minutes. They can be quite loud. They may be very brief or last for several minutes.

Remember, you still can’t talk, gesture, communicate your ideas, discomfort or feelings. You can cover your ears, flap your hands or jump in public.
I grant you temporary permission.
You will be aware of the stares.

When you get home, stare at a lava lamp or another interesting undulating visual pattern for about ten minutes. Allow yourself to get intoxicated by it.
You may remove the headphones while you do that.

Step 6

Point to letters, very slowly, on a letterboard, keyboard or tablet to communicate your thoughts to someone for your final half hour of the Challenge.

Step 7

Go back to normal and think about your experiences.

In this Autism Experience Challenge I do assume that like me, and so many others with nonspeaking autism, you understand words and that the trap is your motor system.

How long could you tolerate it? Did you have to stop early? What were the hardest aspects? What new insights did you gain?

Step 8

Now for your final challenge:

Imagine your whole life like this.
Imagine never being given a means to communicate.
Imagine experts speaking out, denying your rights and invalidating your potential.
Imagine being talked to like a child.
Imagine breaking through this and then hearing experts say that what you communicate are actually someone else’s thoughts.

I invite my readers to try my Autism Experience Challenge. Let me know how it goes.

Assume Competence

The current debate in autism education is between those who assume competence, have expectations of intelligence, and as a result, frequently discover minds that think behind the autistic mask. The other school of thought is reflected in this statement by ASHA. That is, to assume competence is abusive somehow. I know what presuming incompetence does. It deadens hope and kills expectation. It makes seeing the ability impossible.

No one is claiming everyone is brilliant, just that fewer nonspeakers than the experts believe, are dumb. I prefer to believe that nonspeakers may have intellectual skills not immediately evident for a variety of reasons. See here for some reasons.

Look for intelligence and you discover more. Look for disability and you get stuck in limitations.

Please enjoy this Ted Talk on finding competence by Vaish Sarathy.

Scientists Try to Find Ways to Demonstrate that Nonspeakers with Autism Understand

This podcast is attempting to explain alternative means of testing the intelligence of nonspeaking autistic people. (It is the companion piece to the article I shared from The Atlantic Magazine in my last post). These tests rely on evidence in the brain to show understanding when a person cannot communicate. I’m all for showing intelligence because it’s important to show.
I think teaching communication is helpful too. I mean, I really can show my intelligence if I communicate.
That is going to be my goal each and every time I hear or read something like this, because intelligence remains trapped if a person cannot type their thoughts or express their ideas somehow.

Incidentally, my mom and I were interviewed for this podcast.

Exploring Why Standard IQ Tests Fail People with Nonspeaking Autism

This article, from The Atlantic and also Spectrum Magazine, attempts to demonstrate that nonspeaking people with autism may have more intellectual capacity than standardized testing reveals. Thanks to researchers like Yoram Bonneh, (mentioned in the article) maybe more scientists will see that intellectual capacity.
My mother and I were interviewed for this story, in addition to a podcast that hasn’t been broadcast yet.
The fundamental concept is that not talking does not mean not understanding, despite a bizarre obsession by experts to conflate the two. The challenge for experts is imagination. But let me help.

I’m administering an IQ test to you, but your hands are in baseball mitts, your mouth is taped shut and the room distracts with a laser light show.

Good luck, and if you don’t do well I’ll assume your IQ is 52.

The 3 P’s of Communication Skeptics

Nonspeaking does not mean non-thinking. That’s my mantra. Nonspeaking may be caused by motor issues. That’s my message. Motor issues do not cause stupidity. That’s my point.
Being locked internally because of motor issues is not the same as a language processing problem and should not be treated as such.

There is an overwhelming need for professionals to learn about autism from those who live it and can describe it in words. I am referring to the nonspeaking typer who tries to explain autism from the inside out. There are now quite a few of us, and the number is growing. Our messages are always the same. Intact mind/disobeying body. Smart head/dumb body. Thinking mind/non-thinking motor system. Not speaking is not the same as not thinking.

In the six years since my first book, Ido in Autismland, was published, only one researcher ever contacted me to learn about autism from me. That’s kind of pathetic, if you think about it. I’d like to help guide their research based on my real symptoms to help improve treatments and theories. A fair skeptic and an inquiring scientific thinker might take the time to meet a proficient typer, to ask questions, to learn about their journey to increasing fluency. But they don’t, for some reason.

All this is due to the 3 P’s that preoccupy the skeptics. Proofs, prompts and presumption of competence (or lack thereof).

Proof

In ASHA’s response to my editorial, they say they need testing proof before they can entertain the possibility that RPM might have any validity. This intrigues me for a couple of reasons. There is a need to validate claims and I think we all recognize that, but there is more than a single way to get data. Observational data and longitudinal studies, including film, would be one way. Another would be well-designed studies that factor in the motor and anxiety issues people with autism describe. Without doing so, there is a significant chance of a poorly designed study producing skewed or incorrect results.

Have there been studies and internal reviews in the so-called “evidence-based” autism treatments, such as ABA and speech therapy, as to why a significant number of nonspeaking people struggle to progress using these evidence-based methods? It is too easy an out to say progress doesn’t occur because the person is “low-functioning.” If that’s the case, it doesn’t take ten years of costly treatment to find out. On the other hand, some so-called “failures” of evidence-based treatments go on to become successes, as I did, when the treatment adequately addresses the motor issues impeding performance.

Prompts

In ABA the prompts are constant, duly noted in logbooks. In speech therapy the prompts are constant too. There are prompts in PECS, Adaptive PE, in school, in every moment, in every treatment, every day of an autistic kid’s life.

RPM uses prompts too. No surprise really. The acronym stands for Rapid Prompting Method. But the prompts do not consist of motoring someone. People are moving their own arm independently. The prompts are to look, to scan an array of letters, to reach far enough, to help someone gain skills in motor precision and in hands and eyes synchronizing for the purposes of communication. Beginners get lots of prompts. Fluent people get few, and mostly just type, though someone may say “keep going,” or someone may hold a letter board steady. As skills improve, prompts go down. Why are prompts acceptable in every autism treatment except touching letters for the purposes of communication? It’s illogical. And it’s all due to this issue:

Presumption of Competence

Well, you can either presume I’m incompetent or competent. I prefer the latter.

There are two philosophies guiding much of autism theories and education. In one there is no presumption of competence. Rather, the nonspeaking individual is determined to be low-functioning intellectually and not properly processing human speech, thus requiring simplified lessons and constant drilling. This is the prevailing theory.

In the other, there is a presumption of competence— that is, an intact mind may be buried behind a messed up motor system caused by neurological factors. Therefore, if the person is taught to move properly to point and spell words, that person may learn to express thoughts and potentially get a more normal education. Many, once thought to be hopeless cases, have proven that, like books, they shouldn’t be judged entirely by their cover.

That has been true for me and for many, many others. That is why I wrote my editorial, my blog and books. The professionals who insist they speak for science too often ignore evidence that may intrude on their theories, but facts will out. There are more typers each day, and once someone has a voice, he or she wants to speak out.

Announcing the Launch of my New Book, “In Two Worlds”

I am thrilled to announce the  launch of my new book, a novel called In Two Worlds. It is  currently available on Amazon in paperback form and will be available in Kindle and Smashwords very soon!

In Two Worlds release 071718

Dillan’s Voice

My good friend, Dillan, is now a movie star and a spokesman for autism! He is helping to educate the world to understand the truth about profound autism. Here are his amazing films.

Way to go Dillan!

Words from a College Student with Autism

My good friend, Samuel Capozzi, wrote this fine and informative speech for the all-day conference on nonverbal autism held at California Lutheran University last weekend. I am delighted to share his powerful message.

Samuel gradI once read that “God often uses our deepest pain as the launching pad of our greatest calling.” I believe this is true in my young life. Good morning, my name is Samuel Capozzi, and I’m a freshman at Cal State Channel Islands
in Camarillo. I am also pleased to be on the board of Autism Society, Ventura County. I have a diagnosis of moderate autism, and I’m considered non-speaking and non-writing. I only began typing to communicate about four years ago. A lot has happened in that short span! As a matter of fact, my entire life changed.

My communication breakthrough happened in the middle of high school. At that time, I was unable to expressively communicate all that I was taking in, all that I learned, and all that I hoped to achieve. I was reading Dick and Jane readers and doing double digit addition at 16 years old. This was a dark, dark time for me. After more than sixteen years of silence, I felt like I might never be heard, like I might never be understood, and like I might be treated as a toddler
for the rest of my life. To say that my hope was realized in May of 2012 would be a huge understatement!

I think it’s important to know that I didn’t suddenly learn everything with RPM, I was learning all along. I’m thankful my mom read to me at higher levels and showed me educational videos. I also did a lot of incidental learning. It’s a very hard thing to be deprived of rich, age-level learning experiences—experiences most people take for granted.

Life changed when my faithful parents took me to Austin, Texas to learn RPM—the method I use to communicate. Needless to say, many tears were shed in the Capozzi home upon the realization that not only do I understand what is being said, but that I also have excellent reasoning skills and a keen sense of humor!

I decided to stay an extra year in high school to earn a diploma and to become a college-bound student. With hard work and many sacrifices by my loved ones and me, I did it! My favorite class was Latin, and I enjoyed taking the National Latin Exam. I managed to score Maxima Cum Laude two years in a row. My school challenged the students to “Do Hard Things”, so I did, but not only for myself. You see, I understand that my success is my misunderstood and marginalized peers’ success as well.

My remaining high school years were jam-packed with academics which I thrived on! I was even my Mock Trial team’s journalist. It was a whirlwind of an experience, as I responded unusually quick to learning RPM. My high school counselor and teachers were extremely excited about and supportive of my new found means of communication. This was so important as I ‘spread my wings’ in my new world of communication, conversation, and academics. My Latin teacher
took a real interest in my journey, and this made me feel so supported and encouraged. She even read Ido’s book out loud to her family! Just one teacher can make a big difference.

By God’s grace and pure grit, I graduated with honors and managed to take the SAT. Not only was arranging for the necessary accommodations difficult and time-consuming, but I also sat for the test for over 6 hours! So did my friend, Ido. Nonetheless, I am thankful the College Board was willing to work with us on this because I know it will benefit others who face complex communication challenges in the future, and hopefully some of you here today!

As our understanding of autism evolves and increases, I am optimistic that accessing an appropriate education won’t be as challenging for others who communicate differently.

I was accepted at all three universities that I applied to, including Cal Lutheran, and offered scholarships based on academic merit and community service. In the end, I chose Channel Islands because I believe they were the best prepared for a student like me. Go, Dolphins!

Since attending CI, I love learning, walking the halls of a university, and obtaining higher education. As I understand it, I am CI’s first non-speaking, non-writing student. I simply can’t say enough about Disability Resource Programs at CI. I am truly embraced, and my presence is celebrated on campus. It’s a nice change! What inspires me most is my professors’ delighted
responses and even shocked responses when they hear my cogent answers and read my strong essays. I hope to pioneer a path for other students who communicate differently that may come after me. Knowing this helps me forge on when I become overwhelmed!

Life with autism is challenging and difficult in ways most of you could never understand. So, my efforts in high school and now that I’m in college are hopefully not only for my benefit but also for the benefit of my peers and society as a whole.

Autism is now a big part of our society with the prevalence at 1 in 68 births. With what we know, now is the time to re-think autism and give it a new face. Yes, life with autism has caused some of my deepest pain; however, living victoriously with autism is also my greatest calling. I am profoundly grateful to have meaningful communication, and I hope that I have helped some of
you to better understand its importance for everyone.

Challenging and Changing Perspectives

By Edlyn Pena, guest blogger
As a researcher who studies ways to support the access and success of students with autism in higher education and a mom to a handsome six-year old son who uses an iPad to communicate, I aim to help Ido advance his message to educators, professionals, and caregivers. My objective here is to provide context and encourage you to learn more about approaches that enable nonverbal individuals to spell and type to communicate. I’ve received criticism for endorsing approaches like Rapid Prompting Method (RPM) because they are not evidence-based. There is still much speculation in the autism community about the legitimacy of RPM and other approaches that teach pointing to letters and typing. Research on these methods are lacking. I understand that professionals will continue to question these methods until they are rigorously studied and published in peer reviewed journals. I am the first to believe in well-designed research studies. As an academic, I also believe in being open to new possibilities, ideas, and presuming competence in individuals on the spectrum. Without this openness, I would have never exposed my own son, Diego, to RPM. He would not be where he is today with regard to sharing how autism affects him daily (e.g. “Paying attention is tiring”) and to articulating unusual ideas (e.g. “Eight elephants play in a new kind of ecosystem”). I would not know the level of depth of thought and curiosity hidden in his mind. Diego’s voice is now being heard.

Ido is a pioneer in advancing our knowledge about autism and people with complex communication challenges. Ido’s book, Ido in Autismland, is by far the most powerful book I have read about autism. Other authors write compelling books about autism, prompting us to think about those on the autism spectrum. But Ido is different. He is extraordinary because he changes the way we think about autism. He disrupts our misguided notions that lack of speech equates to lack of intelligence; that students with autism are impoverished of expressing or recognizing emotions; and that all students who are non-verbal belong in special day classes without the opportunity for inclusion. Contrary to many of the messages the world receives on a daily basis about people with autism, Ido’s book tells us that the minds of people with autism are as complex, creative, and intelligent as yours and mine.

On a personal level, reading Ido’s book was transformative and allowed my relationship with my son to turn a corner. I now talk to Diego like I would any other smart and capable 6-year-old. I make efforts to talk to Diego, not about him, when he’s in the room. Ido, Diego, and children like them are nonverbal, affected by autism, and brilliant. By typing to communicate, they blow us away with their complex insights, imaginative ideas, and witty humor.

If you are a professional in the autism field, I invite you to think outside of the box about what “conventional wisdom” on autism tells us. Without doubt, this takes courage. It means acknowledging that we do not know everything about autism. You might learn, as I did, that our perceptions about the capabilities of non-verbal individuals are wrong. Rather than dismiss RPM or other approaches to support typing, I encourage you to educate yourself about the approaches. Interact with individuals who have learned to type. Read Ido’s book or watch videos of children and teenagers who point to letter boards or type independently. For example,

https://www.youtube.com/watch?v=Wvn7kYJyOFM

And, of course, Ido has posted great video clips of him typing on this website. For example,

https://www.youtube.com/watch?v=ZLtQWXdDCFo

From one professional to another and from one parent to another, I urge you to take a chance to learn more before dismissing approaches to support our children who otherwise have limited means to communicate. We have the power to make real change by enabling the individuals we care for and serve to communicate in rich and meaningful ways.

-Edlyn Vallejo Peña, Ph.D.

www.EdlynPena.com
Assistant Professor
Graduate School of Education California Lutheran University