Success in Choosing Higher
Education… and Staying there
For People on the Autism Spectrum
Massachusetts Institute of Technology
Cambridge, MA
May 16-20, 2009
Stephen M. Shore, Ed. D.
www.autismasperger.net
1
INTRODUCTION AND
A LITTLE BIT ABOUT ME
2
A LITTLE BIT ABOUT ME
Introduction
The Autism Bomb
Loss of
speech
&
tantrums
Self-stims
Environmental
withdrawal
3
W H A T
ASA
(2005)
I S
A U T I S M ?
A complex developmental disability that typically
appears during the first three years of life. Autism
Spectrum Disorder results from a neurological
condition that affects the functioning of the brain.
Reframe
DSM
IV-TR
(2000)
Miller
(2000)
Social interaction
• Communication
Communication (but no significant clinical delay
• Socialization
for AS)
Repetitive motions and restricted•interests
Restricted
Interests
Anything that interferes with the central nervous
system getting the needed information from the
environment.
OOPS!!!!!
WHAT ABOUT SENSORY INTEGRATION ISSUES?
4
INNER AND OUTER SENSES
S E N S O R Y
V I O L A T I O N S
Sight
Hearing Vestibular
Tactile
(Inner ear)
Proprioceptive
(Muscles &
joints)
Smell
Taste
Vestibular:
Hypo —> Spinning/Hyper —> Gravitational Insecurity
Proprioceptive: Deep pressure, Under mattresses, Weighted blankets
Love airplanes but they mess w/Vest & Prop senses
Brave little kids
5
A CLOSER LOOK AT MY
PLACEMENT ON THE AUTISM SPECTRUM — Adult
AGE
E
V
E
N
T
S
0
1.5
2.5
4
6
8
10
13
19
Typical
development
Turn over at
8 days
Rapid
physical and
motor
development
Autism
bomb hits
Withdrawal
from
environment
Tantrums
Putnam
evaluation
of atypical
developme
nt, strong
autistic
tendencies
& psychotic
Early
intervention
from
parents who
refute
recommend
ations for
removal
from home
Enter
Putnam
Condition
improves to
“neurotic”
The
wonderful
world of
watch
motors
Echolalia
and return
of speech
Eating
baby food
Kindergarten
Social &
academic
difficulties
Discovered
making a
mess of
myself
while eating
BBQ
chicken
wings
Loved cats
but dogs…
Yikes bikes!
Cracking
rocks
Special
interests in
astronomy
and weather
Teacher
concerns for
reading and
math
difficulties
Concern
about
dropping the
letter “e.”
My friend
says “he
feels like a
pizza” and I
argue with
him that he
does not
look like a
pizza and
probably
does not
feel like one
either
Middle and
high school
Finally
getting it
together but
still often in
left field
Discovering
the band
room
Time to
focus more
on people
and not their
bicycles
College
More
friends
Dating
Others
really
do
think
differen
tly
Utopia!
Paradigm shift from
being advocated for
to advocating for one’s self
Professor of Special Education at Adelphi University
6
CHARACTERISTICS OF CHILDREN
WITH AUTISM SPECTRUM CONDITIONS
Overly sensitive
to loud noises…
Difficulty with hair
washing and brushing…
Only likes certain types
of clothing…
Adapted from Myles, Cook, Miller, Rinner & Robbins. (2000). Asperger Syndrome and sensory issues :
Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing. P. 5.
7
THE AUTISM SPECTRUM
8
THE AUTISM SPECTRUM
Severe
Moderate
Light
Increasing Variability of Presentation
Kanner’s
PDD-NOS
HFA/AS
Rosenn, D. (1997). “Rosenn wedge”. From Aspergers: What we have learned in the ‘90s conference in Westboro, MA. Used with permission
T w i c e
E x c e p t i o n a l i t y
9
SELF-ADVOCACY FOR
PEOPLE WITH AUTISM
10
S E L F-A D V O C A C Y
D E F I N E D
Self-advocacy involves knowing
when and how to approach others in order to
negotiate desired goals, and in order to
build better mutual understanding, fulfillment,
and productivity.
Successful self-advocacy often involves an amount of
disclosure about oneself that carries some degree of risk,
in order to reach a subsequent goal of better mutual
understanding.
11
DEVELOPING A
SELF-ADVOCACY PLAN
12
MY ADVOCACY PLAN
Name ____________________
SCAN: Where is the challenge?
Perception of the environment
1. Sensory
How we think
2. Cognitive
Social cues and how we feel
3. Socio-emotional
ADVOCACY:
DISCLOSURE:
Explaining your needs
Giving the reason why
SCAN
ADVOCACY
DISCLOSURE
Challenge
Explaining your needs
The reason
What is causing the
difficulty?
…promoting greater
understanding and in a
way the other can
provide assistance
Partial – Note specific
characteristic
affecting a
situation only
Full
– Diagnosis
13
MY ADVOCACY PLAN
Name ____________________
SCAN
ADVOCACY
DISCLOSURE
Challenge
Explaining your needs
The reason
Sensory
Fluorescent lights
Cognitive
Remembering verbal
instruction
Socio-emotional
Decoding jokes
Ask instructor to
change lighting
Request instructor for
written instructions
Ask for fellow students
to tell you when they
make a joke
Partial – I have
sensitive eyes
Partial – I remember
things better when I
write them down
Partial – I take things
very literally
14
INCIDENTAL HIDDEN CURRICULUM RESOURCES
15
S U C C E S S
W I T H
A S P E R G E R’ S
16
SUCCESS IN HIGHER EDUCATION
FOR PEOPLE ON THE
AUTISM SPECTRUM
17
DON’T LET THIS HAPPEN…
Special Education is ALL DONE!!
I want to be just like EVERYONE ELSE
OOPS!!!!!!
Well…
Maybe I DO need to find the Office of Student
Support
Paradigm Shift From
Being Advocated for to Self-Advocacy
18
INSTITUTIONAL RESPONSIBILITIES
High School
College
• Provide those deemed in
need of special education a
customized education
according to their needs in
order to level the playing
field.
• Provide equal access to educational
programs, services, facilities & activities
• Individuals with
Disabilities
Education
Act
• Americans with
Disabilities
Act/504
A.S.
• Provide reasonable accommodations,
academic adjustments and/or auxiliary
aids & services
Univ
• Maintain student confidentiality
• Written policies & procedures (including
grievance) in alternative format
19
T
R
A
N
High School
S
I
T
I
O
N
College
• 5-6 hours/day of classes
• 4-5 classes each 3-4 hours/wk
• 1-2 hrs/day HW
• 2 hrs/day/class hour HW
• Frequent quizzes, noncumulative tests
• 2-3 cumulative exams/semester
• Teaching content from
textbooks
• Research, primary sources
• 25-20 students/classroom
• 10-300 students
• One building
• Entire campus
A.S.
Univ
20
T
R
A
N
S
I
T
I
O
N
Commuter?
PROs
• Supervision & monitoring
CONs
• Dependency issues
• Existing support services
A.S.
• Stigma, self-esteem
• Smoother transition
• Commuting details (drive,
Univ
mass transit)
• Reduce stress
• Limit testing
• Less worry?
• Socially isolated
• Less financial risk
• Less challenging?
21
T
R
A
N
S
I
T
I
O
N
Residential?
Pointers
• Size matters and smaller is not automatically better
A.S.
• Investigate housing options carefully
• Disclosure issues
Univ
• To meddle or not to meddle
• Know thy roommate
22
T
R
A
N
S
I
T
I
O
N
Tools
• Start now
• Work on self-advocacy & life skills
• Listen, support & assist
• Remember who’s the boss now
A.S.
Univ
• Call/visit/question everywhere
• Documentation & policies
• Transition/orientation programs
• Build a team
• Start now!!!
23
Self-Initiated Individual Education Plan (Cont.)
Who must we get on board?
Student
Student’s
(as
appropriate)
IEP Team
Special
Education
Teacher(s)
or Provider
A Person Who
Can Interpret
Evaluation
Results
Regular
Education
Teacher(s)
Student
Student’s
as
IEP
appropriate
to
their
TEAM
ability
Others with
Knowledge or
Special
Expertise
about the
Child
School System
Representative
Transition
Services Agency
Representative(s)
Parents
A Guide to the Individualized Education Program.
Office of Special Education Programs. 16 June 2002.
<http://www.ed.gov/offices/OSERS/OSEP/Products/IE
P_Guide/>
• Student
- Student’s Guide to the IEP
- Helping Students Develop Their IEP
www.nichcy.org
• Parents
• Special Education Teacher
• Regular Education Teacher(s)
• Administrators
• Others
24
Making College Right
A.S.
Univ
M A J O R K E Y——>S U P P O R T
Family
Interconnection is Vital
Friends
School
Other
25
SOME STEPS FOR A SUCCESSFUL COLLEGE EXPERIENCE
A.S
Univ
•
•
•
•
-
Aides
-
•
Friends
Dorm?
- Single?
Parties
Appropriateness
Carbon-based
Silicon-based
•
Home?
Part time?
• Full time?
Accommodations?
26
Looking For The Right College (Cont.)
Preparation
Questions that need answering
• Documentation…
• Where is the office of student
support?
- Appropriate
- Recent
- Suggestions for reasonable
accommodation
Issues to consider
• Is assistance needed with…
- Academic Accommodations
- Independent Living Skills
A.S.
- What is needed to obtain
accommodations?
Univ
- Are they friendly?
- Do they know what AS is?
- Knowledgeable?
- Willing to learn?
27
M a k i n g C o l l e g e R i g h t (Cont.)
ACCOMMODATIONS
WORKSHEET
Name:
Any Student
School:
Any State College
Counselor:
Unnamed Somebody
Date:
August 15, 2009
Challenge
Cause
Suggested Accommodation
Taking tests with
multiple questions
per page.
Visually over
1.
stimulating, gets
2.
lost in all the words.
Only one question per page.
Two sheets of paper to cover
distracting verbiage.
Unable to
concentrate under
fluorescent lights.
Perception of 60Hz
cycling due to visual
sensitivity
Explore alternate lighting, sit
next to window, wear baseball cap
in class.
Scheduling long
term assignments.
Poor executive
function.
Regularly meet with professor
(perhaps once a week) to keep on
target with lengthy assignments.
28
M a k i n g C o l l e g e R i g h t (Cont.)
REALITY CHECK
(Lorraine Wolf)
A.S.
Colleges are in the business
of
education
Univ
College are not rehabilitative institutions
29
WHAT MIGHT BE
LIKE TO HAVE
A DISABILITY
IN A COLLEGE
CLASSROOM?
Let us find out...
30
DISABILITY
IN
THE
CLASSROOM
Now… Let’s tell a story in a round-robin fashion
Instructions:
All you need to do is relate your sentence to the
previous person’s sentence.
Adapted from: Lavoie, R. (1989). Understanding Learning Disabilities: How
difficult can this be? (Videotape) Greenwich, CT: Peter Rosen Productions.
31
DISABILITY
IN
THE
CLASSROOM
Now… Let’s tell a story in a round-robin fashion again
EXCEPT
•
This time… no words can contain the letter “n”
-
No “n” at the beginning, middle, or end
Adapted from: Lavoie, R. (1989). Understanding Learning Disabilities: How
difficult can this be? (Videotape) Greenwich, CT: Peter Rosen Productions.
32
IN CLOSING…
33
S U C C E S S
W I T H A S P E R G E R’ S
Definition
If you are productive and fulfilled with
your life you are probably successful
34
www.autismasperger.net
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