Cue: Sci-fi theme music.
A male voice speaks as a person who looks remarkably like you appears on screen:
Imagine, if you will, that your body has turned against
you. Perhaps you’ve had a terrible accident, or a strange new virus has
attacked your neurological system. Once you’ve recovered, your body appears to be intact, and, yet, you are different. You want to walk to the kitchen, but
your legs take you to the living room, instead. You're hot and sweaty, but you cannot initiate the movement which will allow you to remove your sweatshirt. You’re thirsty and you want a
drink, but you cannot speak. When you are shown pictures of a drink and a cracker
and asked to point to the one you want, your hand moves to the cracker, even
though you willed it to move to the drink.
And when you are asked to point to your name, which you can still read,
your hand points to someone else’s name, instead. Unable to access the words you are thinking,
doctors and other experts determine that your brain is damaged beyond repair. You
are deemed “intellectually disabled” and forced to attend training classes
where you must point to cards to show that you are capable of learning. All the
time, you know exactly what is going on—you can still read and reason and
think-- but you can’t express your thoughts and abilities. Your body continues
to betray you. It’s like the wiring has gotten scrambled somewhere between your
thoughts and your actions.
You find that if someone holds your elbow and offers gentle
prompting, you can stay on task and control yourself enough to point at
pictures, and perhaps even form letters with a pencil. Your hopes are raised—surely
now someone will recognize that you are still intelligent, and that you are
simply trapped inside your uncooperative body. Maybe you’ll be presented with a
page of letters to spell out some kind of S.O.S. You are relieved to know that,
finally, you’ll be able to express yourself again! You can stop doing all the pointing drills in
which you fail to demonstrate your understanding of numbers, colors, and
letters. You can have genuine human interaction; you can be taught things at
your true intellectual capability!
But—no. The experts don’t believe you were pointing to the
correct answers of your own volition. They think you’ve been given too much support from your aide.
If you are really intelligent, you’ll need to demonstrate for them without
help.
Again, your body won’t obey.
Fine, say the experts. Show us that you can point with one
of us holding your arm, instead. Maybe then we’ll believe you.
Anxiety floods your brain. Your uncooperative limbs are even
more jerky and uncooperative. You are frightened that you’ll lose this chance
to prove yourself, and, in your fear, you are unable to respond.
The verdict? Your intellect is nonexistent. You will
continue doing unsupported pointing drills until you can demonstrate that you
know your name, or the difference between colors, or the answer to one plus
one.
And the aide who offered you gentle support and prompting
will be shamed for planting false hope in the minds of your family. It is clear
that you have no capacity to learn.
Cut to darkness.
Does this sound like the premise for a horror story? Maybe
one of Rod Serling’s Twilight Zone episodes-- it’s frightening enough. But it’s
a scene which is playing out again and again in our own classrooms, and has
been for years. It’s the challenge faced by countless nonverbal autistic people
who are being denied the chance to find communication opportunities because
they are being asked to demonstrate their understanding in ways which do not
work for their condition.
It's akin to the challenge a quadriplegic person would face if he were asked to demonstrate his understanding of a concept-- to prove his intelligence--by raising his hand.
As I work on the revisions of my novel,
Sepia, I continue to
research autism and facilitated communication (see my Dec. 27, 2011 blog entry,
Sepia, Autism, and Facilitated Communication, for
further explanation).
And I was fortunate enough this past week to
come across the blog and book of an autistic teen named Ido Kedar, called
Ido in Autismland.
I've just painted you a scenario which is eerily similar to Ido's struggles as a young, intelligent boy, imprisoned by the neurological misfirings of his autistic (yet otherwise intact) brain. What a nightmare he endured. And what a triumph of the spirit he has achieved.
Earlier this year, I read The Reason I Jump, by Naoki Higashida, a thirteen-year-old boy with
severe autism. His perception and his empathy, his love and his fears of being burdensome to his family--they show a greater depth of emotion and far less ego-centrism than you might credit any thirteen-year-old with, and the story that he includes at the end is achingly beautiful. His work and Ido's certainly challenge the idea that autistic people do not possess "theory of mind" in which we are able to understand what others may be thinking as separate from what we, ourselves, are thinking.
There is a growing body of work by nonverbal autistic people (who have had the kind of support necessary to help them learn to communicate on their own terms) which I believe should be essential reading for all humanity. In the 2011 blog entry I referred to earlier, I mention other nonverbal autistic
people who have managed to break out of their prisons—and there are many more I
haven’t mentioned. Tito Mukhopadyhay, most notably, was taught by his mother,
Soma, to write and type through a system she developed, called the Rapid
Prompting Method. While many experts cast doubt on Soma's work because she supports and prompts her students as they learn to use a letterboard, it was Soma who helped Ido Kedar break free of his prison and
learn to type and communicate. Ido now uses a letterboard and also a
speech-enabled iPad to talk to others without anyone holding his arm, and his views and success challenge all of us to
re-think our assumptions about facilitated communication and autism itself.
Ido’s autism is not cured. And he will be the first to say
that he truly wishes there were a cure for autism, unlike many folks on the
“higher” end of the spectrum who would like to be accepted by the world the way
they are. Ido fights his body daily so that he can stay connected to the world
which so many of us take for granted. But being taught to communicate has
changed his life. He no longer despairs that he will always live as if he’s in
a kind of hell, screaming inside for someone to recognize that his mind is
intact while being drilled on the alphabet and simple preschool concepts. Now he is championing
the cause of other nonverbal autistic people. He is trying to tell us that he
is not an anomaly. He’s just one of the lucky ones, given a chance to
communicate through a method that experts call “controversial”. He’d like others to be given the same chance.
It is time for all of us to reexamine our beliefs about
autism—especially severe autism. While we have learned a great deal about
autism on the higher end of the spectrum from people who have Asperger’s, there is an assumption that those on the
other end of the spectrum are suffering from the same neurological differences
to a higher degree, and that they are also intellectually incapacitated. As Ido
suggests, there exists the possibility that severe autism is a different form
of neurological impairment (with many similiarities to Asperger’s), which means
that the methods which work for some children on the autism spectrum are not
going to work for all kids with autism. The inability of those with severe
autism to function and respond may have nothing whatsoever to do with
lack of intelligence, and everything to do with the approach that’s taken to teach them.
And prompts, both physical and verbal, may be exactly what those on the severe end of the spectrum need in
order to break through their prison walls.
When I began writing Sepia, one of my goals was to honor my
disabled brother. Although he was intellectually disabled and not autistic,
there was much more to him than met the eye. The fortunate few who took the time to get to know him were rewarded by their efforts. Out in public, most people turned away from him. Many would not even help us to get through a doorway when I pushed Bobby in his wheelchair. I believe that too many people
are willing to dismiss others who are “different” as being somehow less human
than others. It is this kind of thinking which I rail against.
Mickey Callahan, one of the main characters in my book, is nonverbal, intelligent, and
autistic. There is so much more to him than he is given credit for. I want my
readers to see people with disabilities differently after meeting Mickey. The power of story, the power of print--it is phenomenally strong.
Reading
Ido’s and Naoki’s writings makes me even more passionate about opening people’s
minds to release their limiting views toward those with disabilities. We need to look past people’s differences and
embrace our common humanity. We need to be willing, always, to look for the potential
in others, and to seek out ways to break down the barriers that divide us. We cannot remain satisfied with the status quo. It is time to push past old assumptions and explore other avenues of learning and communication for those who are at our mercy. Just because drill and point methods may work for some students, we cannot operate as though they will work for all. 'Sink or swim' is an unacceptable
educational philosophy for any student. It is especially repugnant for
students with special needs. We cannot be afraid to explore methods of facilitated communication because there is (heaven forbid) support embedded into the process. What are we afraid of? Success?
Please read a recent article about Ido
here, and view the
embedded video which you’ll find halfway through. Read Ido’s
blog. Check out
his Facebook page. Instead of high fives, high praise is due to this young
warrior who challenges us to help him change the world. Read his book,
Ido in Autismland. He’s already begun to
open my eyes. Will you hear him, and open yours?
