The Autism Experience Challenge To Experience the Non-Verbal World Ido Kedar
I have been typing to communicate since I was seven years old and teaching about autism since I was 12. My first book about autism, my memoir, Ido in Autismland, was published ten years ago, when I was only 15. It has reached many people.
My second book, In Two Worlds, the first novel written by a person with nonspeaking autism, followed in 2018. In both my books I sought to shed light on the inner world of autism, to explain the true nature of my disability and to effect changes in people’s lives. Yet, no matter how many more autistic typers there are, no matter how many more books and articles there are written by autistic typers, no matter how much new research is shedding new insight on autism and literacy, the system remains largely unchanged.
Many special education teachers don’t look at their nonspeaking autistic students in their classrooms with any expectation or understanding. None teach typing to communicate, nor even offer the option. It is equivalent to teaching a class of deaf students, turning your back so they can’t see your face and never offering them sign language to communicate.
The denial of the opportunity to communicate by letters to autistic kids must be rethought.
After all, the many autistic typers today were all once like the child unable to communicate, unable to progress beyond his apraxia in speech therapy or show his intelligence consistently because of his body’s unruly movements. It was only thanks to their parents, who after everything else they tried had failed, pursued at last an approach to communication that many of the experts who advised them had dismissed which finally created the chance to break the isolation, to enable them to connect to their children as people, thought to thought.
For many people without an expressive communication disability, it is nearly impossible to imagine what living without communication is like.
After all, speaking, gestures, facial expressions and even writing come easy to them. But for a person with nonspeaking autism -- a motor disability -- none of those do. So many motor movements that occur without thought to others are incredibly hard to many autistic people and take years of practice. Typing thoughts with one finger can be an extraordinarily difficult motor skill taking time, practice and a skilled instructor. It is not copying. It is developing the ability to type out a thought and is a motor skill that improves with time and practice. I am able to hold my own keyboard while I type but this is a skill that has developed over time. I did not start out able to do so. In my empathy exercise, the Autism Experience Challenge, I have endeavored to give people who live with and work with autistic people a short taste of what is for many: a lifelong experience of isolation and being misunderstood. I hope you will take the time to try it out and see if it impacts your understanding of autism.
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.
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.
Every time you feel upset -- for example maybe, 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:
Hands quiet or Quiet hands
After a minimum of six hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, they cannot have 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 you may 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.
Because I can’t induce sensory highs, I can help you simulate overloaded or intoxicated senses for Step 5. Prior to the challenge, you should 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 should 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 or 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.
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.
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?
Now for your final challenge:
Imagine your whole life with no Step 6.
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.
There is a huge need to rethink how autistic children are taught in schools. Granted, there is a shortage of qualified communication instructors, but with time, experience and training, more qualified instructors will come and more and more autistics will be communicating.
Communication changes us, empowers us and liberates us.
Ido Kedar, 25, is the author of two books. His memoir, Ido in Autismland; Climbing Out of Autism’s Silent Prison, was published when he was 15 years old and has been translated into five languages. His groundbreaking novel, In Two Worlds, takes the reader into the head and heart of a nonspeaking autistic boy, Anthony. Ido has been a tireless advocate, blogger (www.idoinautismland. com), and public educator.