|"I want to talk more than anything in the world. I expect I will." spells out Sydney on her
Letterboard. Sydney Edmond will be 11 years old this month and cannot speak but she
has been taught to communicate with a Letterboard within the last year. Never having
been able to communicate with words before, it turns out she has a lot to say. According
to her mother, whenever they visit a doctor, Sydney spells out, "I want to talk."
According to Lisa, Sydney's mother, Sydney was "cheerful, playful, clever and healthy"
until autism struck after Sydney's DPT/MMR which was administered at 15 months of age
[after which it has been a long, often slow struggle for Sydney to regain some of that
cheerfulness, that playfulness, to find a means of expressing her clear intelligence and
make slow steps toward regaining some semblance of health]. The only unusual symptom
her parents had noticed prior to the 15-month immunization was low muscle tone
(hypotonia). She had a vocabulary of 6 or 7 words which disappeared after the
vaccination, never to return. Sydney was trained to use the Picture Exchange
Communication system (PECS), which she responded well to, but communication was very
basic. According to Lisa, "We managed to ask Sydney what she might want from a
selection of pictures, but never her goals and dreams, her thoughts, her sense of humor . ."
Then on January 16, 2003, Lisa and Sydney's world changed. Lisa viewed a segment on 60
Minutes II about Tito Mukhopadhyay, a young man originally from India, who is severely
autistic and cannot speak. In spite of his inability to communicate verbally, Tito is a gifted
poet and writer, taught how to write by his mother, Soma. Soma has pioneered an
approach of breaking the communication barrier with many children and adults within the
autism spectrum that she calls the Rapid Prompt Method. Tito is not the first autistic
person with the ability to communicate through writing, but Soma's intensive approach
may be amongst the first of its kind to be closely studied and refined with the intent of
creating a methodology to help others. Unlike many educators who try to slow things
down for autistic children, Soma talks constantly and demands rapid responses which she
says prevents the child from being distracted.
Lisa began to emulate Soma's approach, as she had seen on 60 Minutes with Sydney,
obtaining flash cards with letters and numerous materials, including a variety of children's
computer programs to teach letters. Initially, Lisa would ask Sydney to touch or point to
the letter. Lisa at first guided Sydney's hand to the letter and gradually just would touch
her arm, and eventually just her shoulder. Lisa then began building word recognition by
using flash cards of three letter words where you bring the three letters together to make a
picture and the letter that named the picture (such as cat, dog, cow). Lisa would ask
Sydney to point and her pointing became stronger and stronger. During breaks, Lisa
would read constantly to Sydney. Lisa made a Letterboard like the one demonstrated on
60 Minutes and gradually taught Sydney to point to letters on a board to spell a word. A
Letterboard is simply a piece of paper with the letters written on it in black ink. Soma had
used the ABC format when they lived in India:
A B C D E F G H I J K
L M N O P Q R S T U
V W X Y Z . ! ?
0 1 2 3 4 5 6 7 8 9
Here in the U.S. where so many children have access to computers and keyboards, some
parents use what is called the QWERTY format. This is the format used on the computer
and looks like:
1 2 3 4 5 6 7 8 9 0
Q W E R T Y U I O P
A S D F G H K L
Z X C V B N M ! . ?
Lisa had learned from an educational consultant that many children respond better to
light letters on a dark background and so made a new Letterboard with this format; with a
navy blue background, white consonants and yellow vowels and numbers. Sydney
responded well and spelled out that she liked it and told Lisa she could read it more easily.
Eventually Lisa was able to visit the Carousel School in Los Angeles where Soma works to
watch her demonstrate her method so Lisa could fine tune her approach. Soon afterwards,
Soma agreed to do an evaluation of Sydney and became Sydney's teacher. Some worked
with Sydney without touching body, demonstrating that she was capable of communicating
with only minor facilitation. Sydney currently works with Soma once a week for 45
minutes. According to Lisa, Soma varies her approach from child to child, depending on
how she assesses the individual child's sensory issues.
When asked how Soma has helped her, Sydney responded on her Letterboard, "By
showing me some ways to communicate. Soma is my teacher. Mom is my teacher, too.
They are my friends. They are my best buddies! I am so happy and proud!"
Once Lisa built a foundation of letter and word recognition, she established
communication with Sydney by beginning with simple questions requiring a Yes or No
answer to ensure confidence. Next, she began to ask questions requiring only a one word
answer, such as, "What is your favorite color?" and then would chat to make it
conversational. These sessions were always informal, always taking into account Sydney's
level of comfort because Sydney, as is the case for many children with autism, can be
overwhelmed by sensory issues.
Suddenly there came a major breakthrough, Sydney's first self-initiated statement on the
Letterboard. "My own pizza please," she spelled out when she saw her brother had gotten
his own. Lisa immediately jumped in the car to get her daughter that pizza!
Lisa continues, "Since that time, Sydney has asked for clothes when we're out shopping,
selected her own shoes, named her own kitten and various toys and dolls, requested ballet
lessons and told me exactly how she wanted her hair cut. I can't say which one of us is
more in heaven; probably both of us!"
Today, Sydney points to letter on her Letterboard to spell out what she has to say. Lisa
generally holds it for her or has it on an easel in front of her. At this point, Sydney can
often spell out short answers without any facilitation. However she generally does better if
Lisa's hand is on her shoulder. Soma is able to facilitate Sydney's spelling by merely
touching Sydney on the leg as she sits near her side.
Lisa and Sydney take the Letterboard with them everywhere. Lisa had made up a couple
with handles on them so that the Letterboard can by carried on hand or over the shoulder.
On walks, they chat amongst themselves or with their neighbors. According to Lisa,
"When we go shopping, we are able to ask her if she would like anything or if I've
forgotten anything we needed. In restaurants, she can tell me what she'd like to eat."
Although Sydney's parents are divorced, Sydney takes her Letterboard with her when she
visits her father and is able to use this communication with him. He has also been
supportive and cooperative in this intervention which has been very helpful in getting
Sydney to generalize her skills. Both parents feel it's important that Sydney uses this
method of communication with as many people in her life as possible.
Sydney loves to be read to by her mother. One of her recent favorite books was the Story
of Helen Keller, which Sydney was so taken with and inspired by, she didn't want to stop
reading - they read through this book in a very short time. She is currently enrolled in a
ballet class which she loves, is learning to write independently and has shown strong
abilities in math and science.
Sydney still cannot speak, although she is working on sounding out vowels and consonants,
and still has significant sensory processing issues. As Lisa says, "If she is seeing
something, she is not hearing it and if she is hearing something, she is not seeing it.
Neither can she process tactile information along with visual. This makes fine motor tasks
such as writing and puzzles quite a challenge."
According to experts in autism, it appears as if the inability to store and retrieve sensory
information in asynchronous and connected fashion may be a significant underlying issue
in autism. When a neurotypical person receives information from the outside world,
information from all of the senses simultaneously comes into the brain and are merged
into a single picture. Sensory information relating to a single memory is simultaneously
stored in separate locations in the brain for each sense. When a neurotypical person
retrieves a memory, the sensory information previously stored is recombined as a single
memory when the information is retrieved.
However, with an autistic person, all sensory information does not come in at the same
time and is not stored simultaneously. There is typically a timing delay in hearing or
another sense, causing information obtained about the outside world to be stored in a
disconnected fashion within the brain. The hearing part of a memory may not be linked to
a seeing part and visa versa. This may lead to compartmentalized thinking, difficulty in
generalizing frequently and making connections as the internal architecture of organizing
information as fragmented and disconnected as the information it receives.
According to Sydney herself, when she is receiving her information, "Sight comes before
sound, but I hear better when I don't look. I learn best by listening." When asked how
she remembers information, Sydney responds, " I remember everything but not at the
same time. I remember sounds first and sights last."
Researcher Terry Sejnowski ponders, "How does the brain represent time and how do
signals in different parts of the brain that maybe occur at different moments in time, how
is that information integrated together? We're beginning to appreciate that internal time
in the brain can be used for things like attention. That's to say, your expectation of where
a signal is coming from in space, or through temporal synchrony, the firing of neurons
together at the same time. If these theoretical ideas are true . . . it means that some
diseases like autism may be diseases of timing signals of the brain."
Also worthy of note, although many autistic children have difficulty in processing sound as
language, their ability to process sound as music is unimpaired. Apparently, Sydney loves
music. Lisa often plays music for her. Her favorite is Mozart, however she also enjoys
James Taylor. Sydney has communicated to Soma that she composes and replays music in
her head although she does not sing out loud.
Teaching children with sensory processing difficulties such as Tito and Sydney to
communicate will undoubtedly shed more light on how autistic children think and perceive
their world, leading to better understanding of and improved treatments for autism.
When asked how she felt before, during, and after using Soma's approach, Lisa replied, "I
kept reading about miracles happening here, there and everywhere with other autistic
children which thrilled me no end, but I so wanted a miracle for my own little girl. It was
disheartening." Lisa has one word to sum up her feelings as to how she feels since her
daughter has responded to Soma's approach, "Elated!"
|Story of Sydney Edmond
Determined to Break the Silence
By Sue Bennet, Autism Coach December 2003