Eye gaze and Education in Rett Syndrome

1. Eye Gaze and Education
for Girls
with Rett Syndrome
(c) 2012, Kate Ahern, M.S.Ed.
teechkidz@gmail.com
www.teachinglearnerswithmultipleneeds.blogspot.com

3. What is Rett Syndrome?
• occurs primarily in girls
• one in 10,000 to 15,000 girls
• loss of purposeful hand
movements and development of
stereotypic hand movements
(wringing, clasping, hand
mouthing)
• loss of speech
• balance and coordination
issues, decrease or loss of ability
to walk (40% or more loss all
ambulatory ability)
• breathing problems such as
apnea and hyperventilation
• anxiety disorder

4. What is Rett Syndrome?
• scoliosis (80% of girls)
• seizures (60-90% of girls)
• swallowing problems
• gastrointestinal issues
• arrhythmia and other cardiac
issues
• sleep disorders
• tooth grinding
• hypotonia and dystonia
• growth failure
• small hands and feet
• autonomic dysfunction (blue
tinted, cold hands and feet)

5. In her own words:

6. Where do we start with Rett
Syndrome in the Classroom?
Presume Competence!
"The Least Dangerous Assumption":
Because educators lack data on outcomes of educational
interventions with handicapped students, the criterion of the
least dangerous assumption is presented as an interim
standard. The criterion holds that without conclusive data
educational decisions should be based on assumptions which,
if incorrect, for potential will provide the least danger for
independent functioning.
Donnellan, Anne, (1984) "The Criterion of the Least Dangerous Assumption"

8. Myths about Rett Syndrome:
• Rett Syndrome can initially be a regressive disorder, but
it is NOT progressive
• Rett Syndrome is often assumed to cause profound
cognitive impairment, although developmental delays
are often evident it is unclear if they are a result of the
disorder, lack of sensory and educational experiences or
a combination of both

9. I have Rett Syndrome.
You can’t imagine the capabilities it hides.
If tomorrow they found a cure
And I wrote my story.
Which character would you be?
The villain who saw only my limitations
Or the hero who saw me?

10. Apraxia
"The more she means it, the harder it is to do..."
Apraxia is defined as:
A neurological disorder exemplified by the inability to carry out familiar
movements when commanded to do so. Persons with apraxia understand such
commands, and are willing to carry them out, but are physically unable to
perform the task.
-Cleveland Clinic
• in general apraxia affects all movements, although in some cases of Rett
Syndrome deliberate eye gaze is spared, at least to some degree
• requires increased motor planning time from 5-50 seconds, with an average of
11 seconds
• eye gaze may be very effective because girls with Rett Syndrome often have
good eye pointing skills and using eye gaze to communicate needs only one
motor movement, looking, while other methods of communication access
require 2 or more movements (look and point, look and press the switch)

11. Communication
• Without communication
• we cannot establish and maintain
important relationships
• we cannot demonstrate
our learning and abilities
• we cannot speak up when
something is wrong
• we cannot truly be part of our own worlds
• Augmentative and Alternative Communication (AAC)
• Augmentative and alternative communication (AAC) includes all forms of communication (other
than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when
we make facial expressions or gestures, use symbols or pictures, or write.
• People with severe speech or language problems rely on AAC to supplement existing speech or
replace speech that is not functional. Special augmentative aids, such as picture and symbol
communication boards and electronic devices, are available to help people express themselves.
This may increase social interaction, school performance, and feelings of self-worth.
• AAC users should not stop using speech if they are able to do so. The AAC aids and devices are
used to enhance their communication. -ASHA

12. What are our goals?
• interactive communication
• the ability to not only make choices and indicate needs, but
to connect with others
• to build neural connections
• access to the general curriculum
• literacy, numeracy, general knowledge
• to improve quality of life
• to ensure human rights
• individual specific goals
o where it hurts
o when a seizure is coming
o what they enjoy
o "I love you"

13. Communication Bill of Rights
• receive a response to any
• request desired objects, actions, events and
communication, whether or not the
people
responder can fulfill the request
• refuse undesired objects, actions, or events
• have access to AAC (augmentative and
• express personal preferences and feelings
alternative communication) and other AT
• be offered choices and alternatives
(assistive technology) services and devices at
• reject offered choices
all times
• request and receive another person's
• have AAC and other AT devices that function
attention and interaction
properly at all times
• ask for and receive information about
• be in environments that promote one's
changes in routine and environment
communication as a full partner with other
• receive intervention to improve
people, including peers
communication skills
• be spoken to with respect and courtesy
• be spoken to directly and not be spoken for or
talked about in the third person while present
• have clear, meaningful and culturally and
Get a poster of
linguistically appropriate communications
the Communication
Bill of Rights:
http://www.scopevic.org.au/index.php/cms/front
end/resource/id/68
From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for
meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3

14. Communication Bill of Rights

16. Eye Gaze is an Option:
Not THE Answer
• Access methods to
communication need to be
determined by the
TEAM, including the family
• Alternative and Augmentative
Communication requires an
access method choices include:
• Direct touch
• A mouse alternative
• Onscreen or partner assisted
scanning and a way to select

18. More About Access Methods
• Direct selection is choosing a letter, word or symbol by
directly pointing to it with a body part of pointing device
o always the first choice if possible
o tends to be faster and more efficient than indirect
o tends to have a lower cognitive load
• Indirect selection is using scanning or encoding to show
which letter, word or symbol is being choose
o need only one controllable movement to use
o may be the best choice for those with more severe
disabilities
modified from: http://depts.washington.edu/augcomm/02_features/02a_accessmethods.htm

19. What is Eye Pointing?
Eye pointing refers to the way of communicating where the
person uses their eyes to look in the direction of a particular
item or symbol to indicate choice.
What is Eye Gaze Tracking?
Eye tracking is the process of measuring either the point of
gaze ("where we are looking") or the motion of an eye relative
to the head.
These terms are often used interchangeably.

20. Girls with Rett Syndrome are so good at
eye pointing it is one of the diagnostic
criteria!

22. General AAC Research Knowledge
• AAC systems need to be
o engaging
o used for multiple purposes
o personally relevant
• AAC users learn best if receptive language and
expressive language are both addressed
• AAC users need modeling (aided language
stimulation)
• Our goal should be “motivate, model, move out of
the way!”

23. When do we choose eye gaze as an
access method?
Low Tech Eye Pointing
• as an entry way to intentional communication
• as a back up method when a user is too ill, tired or otherwise unable
to use their usual means of communication
• as a back up to high tech eye gaze tracking (please remember that
everyone needs a back up to high tech!)
High Tech Eye Gaze Tracking
• when other direct selection methods (pointing, head stick, head
tracking, joy stick, etc) do not work
• when scanning or encoding is too cumbersome for the user, too
fatiguing or too slow
• severe apraxia requires an access method with limited movement

24. General Alternative and Augmentative
Communication Tips
• language in = language out
• instruct, model, practice, praise
• "close enough is good enough"
• all communication is contextual
• nouns are not enough
• assume intent to teach intent
• teach, don't test
• life needs to be more than a multiple choice quiz
• yes and no are important, but only the beginning
• exploring to learn, learning to explore
• we are all life long learners
• expect communication to get communication
• start with limited distractions and gradually add more
• build in times to just "talk"
• wait!

25. Eye Pointing Strategies
• consistent design between boards/pages
• consistent placement of symbols that
reoccur
• consistent set up across all settings
(school, home)
• increase the space between symbols
• gradually build up to more symbols
• introduce and explain new
objects, symbols or boards
• allow time for the user to just explore (aka
"talk to herself")
• give increased wait time between you
asking or saying something and expecting a
response, up to a minute or two if needed
• Learn together how to make eye gaze
AAC work for you

26. Let's Look at Low Tech!
• looking at an object to make a choice
• looking at things in the environment to communication
• looking back and forth from a person to an object/location
• using picture communication symbols
• teaching "no!"
o once you have "no" you can work on "Do you want juice or
no?" and "Do you think this is pretty or no?"
o this can be followed up with "yes" by modeling, "No. You
do not want juice, so yes you want something else."
• looking at a display of symbols
o consistent symbols, consistent placement
o have a "none of these" or "not on this board" choice
• moving to an eye gaze "book"

27. Multiple Symbol Low Tech Boards
• consistent symbol system
• if working towards a high
• consistent placement of
tech device work on
symbols
holding eye gaze on a
• the larger the board, the
symbol for no more than 2
more symbols you can
seconds to select
have
• if working towards
• in the beginning have large
increased low tech ability
spaces between symbols
only work on looking at the
communication partner
when the message is
finished

28. Tips for Teaching Low Tech
Eye Gaze Communication
• Make multiple copies of eye gaze communication boards with core
vocabulary like, "more", "stop", "like", "want", "look" to
wheelchairs, gait trainers and place in backpacks and purses so they
are always available

29. Tips for Teaching Low Tech
Eye Gaze Communication
• Make multiple copies of eye gaze communication boards with core
vocabulary like, "more", "stop", "like", "want", "look" to
wheelchairs, gait trainers and place in backpacks and purses so they
are always available
• Make contextual eye gaze boards that use core vocabulary for
various places in the house and store in an accessible manner, for
example a laminated bath time board with
"wet", "dry", "cold", "hot, "splash", "in", "out" stored in the
bathroom or story time boards by the book case

30. Tips for Teaching Low Tech
Eye Gaze Communication
• Make multiple copies of eye gaze communication boards with core
vocabulary like, "more", "stop", "like", "want", "look" to
wheelchairs, gait trainers and place in backpacks and purses so they
are always available
• Make contextual eye gaze boards for various places in the house and
store in an accessible manner, for example a laminated bath time
board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in
the bathroom or story time boards by the book case
• label everything in your house (and ask your school to do the
same) with words and symbols, use velcro to attach if possible and
then you can hold up the symbols for, say, TV and DVD to allow
choice making

31. Tips for Teaching Low Tech
Eye Gaze Communication
• Make multiple copies of eye gaze communication boards with core
vocabulary like, "more", "stop", "like", "want", "look" to
wheelchairs, gait trainers and place in backpacks and purses so they
are always available
• Make contextual eye gaze boards for various places in the house and
store in an accessible manner, for example a laminated bath time
board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in
the bathroom or story time boards by the book case
• label everything in your house with words and symbols, use velcro
to attach if possible and then you can hold up the symbols
for, say, TV and DVD to allow choice making
• model eye gaze communication, use the boards yourself!

32. Tips for Teaching Low Tech
Eye Gaze Communication
• Make multiple copies of eye gaze communication boards with core
vocabulary like, "more", "stop", "like", "want", "look" to
wheelchairs, gait trainers and place in backpacks and purses so they
are always available
• Make contextual eye gaze boards for various places in the house and
store in an accessible manner, for example a laminated bath time
board with "wet", "dry", "cold", "hot, "splash", "in", "out" stored in
the bathroom or story time boards by the book case
• label everything in your house with words and symbols, use velcro
to attach if possible and then you can hold up the symbols
for, say, TV and DVD to allow choice making
• model eye gaze communication, use the boards yourself!
• allow time for exploration and "talking to yourself"

33. Low Tech Learning: Eye Gaze Style
• use highly engaging tasks
with a clear beginning and
end
• use the same vocabulary
and set up each time you
do the task
• allow not only for task
completion but
comments, questions and
continuation/cessation in
communication materials
• any activity can be
adapted for
communication - with
some effort and creativity

35. High Tech Eye Gaze AAC
• generally costs $8500 for the • most health insurances will
device, $9000-10000 for the cover a communication device
Eye Gaze connection, $700 - if it is required for health and
800 for each mounting system safety reasons
• plus the case, extra keyboards • private funding/grants are
and mice for programmers sometimes available
and other accessories • please note if a school
• IDEA requires that a school purchases a device it then
district supply a device if it is belongs to the school - they
needed for educational have no obligation to let it go
progress home and may keep it if the
child moves or graduates

36. How Does It Work?
• one or two cameras are • the user looks at a point on
built into the eye gaze unit the screen and that is
• one or more LEDs (which where the cursor goes or
are cleared for safety by • the user looks at a "cell" or
the FDA) shine a nearly square on the screen and it
imperceptible light on the is highlighted
eyes • the user selects or "clicks"
• the camera "sees" the by dwelling eye gaze still in
reflection of the light off one place for a set
the pupils time, activating a switch or
• an algorithm turns the blinking
information from the • basically you look to
camera into "mouse" choose and dwell, press a
movement switch or blink to select

37. Communication = Connection
Use your device to:
• play games

39. Communication = Connection
Use your device to:
• play games
• tell stories

40. Communication = Connection
Use your device to:
• play games
• tell stories
• share photos

41. Communication = Connection
Use your device to:
• play games
• tell stories
• share photos
• send txt messages and
email

42. Communication = Connection
Use your device to:
• play games
• tell stories
• share photos
• send txt messages and
emails
• make calls
• use Skype

43. Communication = Choices
• what to say
• who to talk to
• where to go
• when to do things
• how to get your message
across

44. Communication = Control
• play your music (as loud as
you want!)

45. Communication = Control
• play your music (as loud as
you want!)
• watch videos

46. Communication = Control
• play your music (as loud as
you want!)
• watch videos
• control the TV and DVD
player and anything that
uses an IR remote control

48. It's OK to...
• consider and trial high • to acknowledge requests
tech before "mastering" but not honor them
low tech • to ask people to use her
• add more vocabulary than device and model
others might expect communication
• insist your student have
access to her "voice" all
day, every day
• to ask others to wait while
she formulates and
conveys a message

49. Works Cited
Adapting Creatively http://adaptingcreatively.blogspot.com
Alea Technologies (2009), "GMU Presentation. What is eye gaze? What do you need to know?" Alea Technologies
Website. Downloaded from www.aleatechnologies.com on April 3, 2011.S
Cogain http://www.cogain.org/
Donnellan, Anne, (1984) "The Criterion of the Least Dangerous Assumption" Behavioral Disorders, v9 n2 p141-50 Feb 1984 (print
copy not available).
Gallagher, Rose-Marie (2010)," Eye Gaze Communication Review - A Guest Post", downloaded from
www.teachinglearnerswithmultipleneeds.blogspot.com on March 3, 2011
Jorgensen, Carol (2005) "The Least Dangerous Assumption: A Challenge to Create a New Paradigm" Disability Solution Vol 6 issue
3 Fall 2005 downloaded from www.disabilitysolutions.org/newsletters/files/six/6-3.pdf on on June 30 2010.
Rossetti, Zach and Tashie, Carol (2002) "Outing the prejudice: Making the least dangerous assumption." The Communicator:
Newsletter of the Autism National Committee, 2002. downloaded from inclusivelife.files.wordpress.com/2007/09/least-
dangerous-assumption.pdf on June 30 2010.
SET BC (April, 2003) AAC A Way of Thinking http://www.setbc.org/Download/LearningCentre/Communication/aac_gd.pdf on
April 8, 2011
Simplfied Technology http://www.lburkhart.com/
Tots and Tech http://tnt.asu.edu/