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,

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

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.
Assistant Professor
Graduate School of Education California Lutheran University

One response to “Challenging and Changing Perspectives

  1. Maria Taheny

    After reading Ido’s book, I was struck by how similar it was in neurological impact to ALS or Alzheimer’s. I recently read one study which demonstrated through fMRI studies that even people in so-called “permanent vegetative states” would have areas of activation in their brains when instructed verbally to imagine playing tennis or a favorite activity prior to the brain trauma that resulted in their condition. This opened a whole new way of considering the mind-body issue.

    Equally, I was distressed when I read a recent study where a researcher determined people with autism do not have a “Theory of Mind”! They made this assumption PURELY on the fact that they could not communicate! Ridiculous! Unless a researcher has ESP that has been equally proven by research, I’m going to assume intelligence and a mind in every human being I encounter.

    My dissertation (to be completed by mid 2015) is based on how families share their faith with their children with autism. I’m thinking about changing it to examine the so-called Theory of Mind we currently understand about people with autism by using the internet blogs offered by non-verbal autistic individuals who have stated their beliefs. I think this will literally crush the prevailing belief about Theory of Mind and autism.

    I teach a catechism class to autistic children, and the insights they have, along with the passion they have for faith and God stun me daily. I am humbled by what they know, often feeling as though I am teaching to those who should be doing the teaching! I am glad to see another professional say these things out loud!

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