What if you took everything you thought you knew about nonverbal autism and threw it out the window? What if, instead of presuming an intellectual disability, you presume competence? What if you changed your mindset to presume that people with autism are smart and can learn anything; that they see and hear the world around them and absorb information like sponges? What would that look like?
It would look like us. Our family. Right now.
It has been some time since I posted to this blog. As many of you can relate, life just got in the way and writing about it seemed like the last thing I wanted to do. Peter is now almost 15 years old. As Peter got older and taller, his behavior became even more unpredictable and difficult. His frustration kept building, and we felt helpless. We thought we had done all that we could for him and envisioned a somewhat bleak future for him.
Until…
Jump back in time a couple of months. Out of the blue, I got a Facebook message from a friend from church containing the following message:
Hi, Laura. I just saw a very interesting video on FB about a communication breakthrough for a teenage boy with autism. The 13-minute post was by Jason Hague. I was wondering if you have ever heard of him? He tells the story of breakthroughs recently made by his son, Jack. I was touched by Jack’s story, an dhis dad suggested a couple of links for more info. He also recommended viewing the documentary SPELLERSTHEMOVIE.com/. You may already be familiar with this approach, but I wanted to pass it along just in case. Hugs!
Not having ever heard of any of this, I clicked on the link she sent and watched the video. I was moved, but I was still unsure as to the method of communication the video discussed. I followed links to a website called SPELLERS.com and began to delve in. I did some reading and some research, then watched the documentary. I was astounded. Here was a record of a number of teens and young adults, all non-speakers like Peter, who learned to communicate through spelling on letter boards.
A few weeks went by, and I read on the website about SPELLERS Immersion Week, a week-long training for parents and caregivers to learn the skills needed to lead their child through this communication journey. It was to take place in Tampa in March. I can’t explain this, but I felt compelled to pursue this. I knew from my research that this method has not yet been proven by scientific method, and that there is some controversy and push-back from the professional community.
Still, something told me this was something we needed to try. Other than the financial risk, there was nothing to lose, right? After discussing it with my husband, we decided to bite the bullet and throw ourselves into Immersion Week in Tampa. We had low, low expectations. I’m ashamed to admit this. Having been disappointed so many times, it’s hard to have hope. Hope is difficult. So we went to Tampa, all the while thinking, “What if Peter is the first child in this program who can’t spell at all?”
Fast forward: Immersion Week is over and we are back at home. My husband and I are almost numb, trying to process everything. Our outlook has changed. Our perspectives have changed. Our thought processes have changed. WE have changed.
Because this: Peter CAN spell. Boy, can he spell! I’m talking “CARNIVORE, HONEY BADGER, SNOWBOARD, MILKSHAKE, OCEAN.” More importantly, though, we learned that he is full of knowledge and smarter than we could ever have imagined! All these years he has been absorbing information like a sponge, from every situation and every environment. He knows about history, geography, and science. He knows about politics. He knows about culture. When he answered the question “What does a pescatarian eat?” by spelling FISH, we about fell out of our chairs! He spelled out the capitals of California (SACRAMENTO) and Illinois (SPRINGFIELD). He knew the names of presidents (including the current one). He blew us away when he was asked “Name a person in history who was famous for having a dream,” and he spelled MARTIN LUTHER KING, JR.
It was incredible watching this doorway being opened for Peter. If we were not there as witnesses, we would not believe it. Because all this time – nearly 15 years! – we have been told that, developmentally, Peter is at the level of a 7-year-old. Physicians and therapists and teachers have always told us that he has an intellectual disability.
Now we know better, and I want the world to know. Peter is NOT intellectually disabled. He has a motor planning disability. It’s called APRAXIA. It’s a disconnect between the cognitive part of the brain and the part of the brain in charge of motor planning (speech and movement). His intellect is solid, but his body prevents him from being able to “prove” his intelligence by standard testing means. Since every kind of testing measurement requires a degree of motor movement (speaking, signing, pointing, filling in bubbles, etc.), these children with apraxia perform poorly simply because they are not able to complete the motor steps needed to answer questions.
Wrap your head around this: which is the safest option? (1) To assume that a person with autism has an intellectual disability and then limit his/her opportunities; OR (2) to presume that a person with autism is competent and then allow him/her access to age-appropriate learning opportunities? The least dangerous assumption is #2. Presume Competence. Also think about this: among the thousands of clients who have gone on this Spellers journey, not ONE of them has been unable to spell.
Life looks different for our family now. We speak to Peter as if he were a neurotypical 15-year-old. We have vowed to play educational podcasts in the car and watch science and newscasts on TV. We will read age-appropriate books to him. And we will continue to practice the Spellers Method. It’s going to take time and patience and lots of practice. If we stick with it, I am certain that Peter will one day be fully “open” and able to answer any question we ask him with spelling. He WILL be able to tell us what he thinks about his life.
We only hope to someday see him spell, “Thanks, Mom and Dad, for giving me this chance. Thanks for believing in me. I was locked away inside myself. Now I am free. Now you know me.”
Perfectly Peter 