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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
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INTRODUCTION AND A LITTLE BIT ABOUT ME
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A L I T T L E B I T A B O U T M E
Introduction
The Autism Bomb
Loss of speech
&tantrum
s
Environmental
withdrawal
Self-stims
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W H A T 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.
Social interactionCommunication (but no significant clinical delay for AS)Repetitive motions and restricted interests
Anything that interferes with the central nervous system getting the needed information from the environment.
OOPS!!!!!WHAT ABOUT SENSORY INTEGRATION ISSUES?
ASA(2005)
DSMIV-TR (2000)
Miller(2000)
Reframe
•Communication
• Socialization
• RestrictedInterests
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I N N E R A N D O U T E R S E N S E S
Sight
Hearing Tactile
TasteSmell
Vestibular(Inner ear)
Proprioceptive(Muscles &
joints)
S E N S O R Y V I O L A T I O N S
• Fluorescent
lights
• Haircuts
• Bland
foods• Kissing
Dad- Coffee and
beard
• Chirping
birds
• Ticking
clocks
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
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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — Adult
Typical develop- mentTurn over at 8 daysRapid physical and motor develop-ment
Autism bomb hits
Withdrawal from environment
Tantrums
Putnam evaluation of atypical development, strong autistic tendencies & psychotic
Early intervention from parents who refute recommendations for removal from home
Enter Putnam
Condition improves to “neurotic”
The wonderful world of watch motors
Echolalia and return of speech
Eating baby food
Kinder- garten
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 differently
Utopia!
AGE 0 1.5 2.5 4 6 8 10 13 19
E
V
E
N
T
S
Paradigm shift from being advocated for
to advocating for one’s self
Professor of Special Education at Adelphi University
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Bumps
into
people
in li
ne…
Difficulty with hair washing and brushing…
Overly sensitive to
loud noises…
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.
Problems with handwriting…
Picky eater… Always “on the
go”…
Only likes certain types of clothing…
CHARACTERISTICS OF CHILDREN WITH AUTISM SPECTRUM CONDITIONS
Difficulty paying attention…
Clumsy…
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THE AUTISM SPECTRUM
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T H E A U T I S M S P E C T R U MSevere Moderate Light
Increasing Variability of Presentation
Kanner’s PDD-NOS HFA/ASRosenn, 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
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SELF-ADVOCACY FOR PEOPLE WITH AUTISM
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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.
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DEVELOPING A SELF-ADVOCACY PLAN
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MY ADVOCACY PLAN Name ____________________
SCAN: Where is the challenge?
1. Sensory
2. Cognitive
3. Socio-emotional
ADVOCACY:
DISCLOSURE:
Perception of the environment
How we think
Social cues and how we feel
Explaining your needs
Giving the reason why
SCANChallenge
What is causing the difficulty?
ADVOCACYExplaining your needs
…promoting greater understanding and in a way the other can provide assistance
DISCLOSUREThe reason
Partial – Note specific characteristic affecting a situation only
Full –Diagnosis
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MY ADVOCACY PLAN Name ____________________
SCANChallenge
ADVOCACYExplaining your needs
DISCLOSUREThe reason
SensoryFluorescent lights Ask instructor to
change lighting
Partial – I have sensitive eyes
CognitiveRemembering verbal instruction
Request instructor for written instructions
Partial – I remember things better when I write them down
Socio-emotionalDecoding jokes Ask for fellow students
to tell you when they make a joke
Partial – I take things very literally
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INCIDENTAL HIDDEN CURRICULUM RESOURCES
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S U C C E S S W I T H A S P E R G E R’ S
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SUCCESS IN HIGHER EDUCATION FOR PEOPLE ON THE AUTISM SPECTRUM
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DON’T LET THIS HAPPEN…
Paradigm Shift From Being Advocated for to Self-Advocacy
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
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A.S.
Univ
INSTITUTIONAL RESPONSIBILITIESHigh School College
• Provide those deemed in
need of special education a
customized education
according to their needs in
order to level the playing
field.
• Individuals withDisabilities Education Act
• Provide equal access to educational programs, services, facilities & activities
• Provide reasonable accommodations, academic adjustments and/or auxiliary aids & services
• Maintain student confidentiality
• Written policies & procedures (including grievance) in alternative format
• Americans with Disabilities Act/504
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A.S.
Univ
T R A N S I T I O NHigh School College
• 5-6 hours/day of classes
• 1-2 hrs/day HW
• Frequent quizzes, non-cumulative tests
• Teaching content from textbooks
• 25-20 students/classroom
• One building
• 4-5 classes each 3-4 hours/wk
• 2 hrs/day/class hour HW
• 2-3 cumulative exams/semester
• Research, primary sources
• 10-300 students
• Entire campus
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A.S.
Univ
T R A N S I T I O NCommuter?
• Supervision & monitoring
• Existing support services
• Smoother transition
• Reduce stress
• Less worry?
• Less financial risk
• Dependency issues
• Stigma, self-esteem
• Commuting details (drive, mass transit)
• Limit testing
• Socially isolated
• Less challenging?
PROs CONs
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A.S.
Univ
T R A N S I T I O NResidential?
• Size matters and smaller is not automatically better
• Investigate housing options carefully
• Disclosure issues
• To meddle or not to meddle
• Know thy roommate
Pointers
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A.S.
Univ
T R A N S I T I O NTools
• Start now
• Work on self-advocacy & life skills
• Listen, support & assist
• Remember who’s the boss now
• Call/visit/question everywhere
• Documentation & policies
• Transition/orientation programs
• Build a team
• Start now!!!
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Self-Initiated Individual Education Plan (Cont.)
Who must we get on board?
• Student- Student’s Guide to the IEP- Helping Students Develop Their IEP
www.nichcy.org
• Parents
• Special Education Teacher
• Regular Education Teacher(s)
• Administrators
• OthersA Guide to the Individualized Education Program. Office of Special Education Programs. 16 June 2002. <http://www.ed.gov/offices/OSERS/OSEP/Products/IEP_Guide/>
Student’sIEP
TEAM
Student(as appropriate)
RegularEducationTeacher(s)
SpecialEducationTeacher(s)or Provider
Others withKnowledge or
SpecialExpertiseabout the
Child
TransitionServices Agency
Represen-tative(s)
Parents
A Person WhoCan Interpret
EvaluationResults
School SystemRepresentative
Student’sIEP Team
RegularEducationTeacher(s)
SpecialEducationTeacher(s)or Provider
Others withKnowledge or
SpecialExpertiseabout the
Child
TransitionServices Agency
Represen-tative(s)
Parents
A Person WhoCan Interpret
EvaluationResults
School SystemRepresentative
Studentas
appropriateto theirability
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A.S.Univ
M A J O R K E Y——>S U P P O R TFamily
FriendsSchool
Other
M a k i n g C o l l e g e R i g h t
Interconnection is Vital
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SOME STEPS FOR A SUCCESSFUL COLLEGE EXPERIENCE
Coursework • Part time? • Full time?• Accommodations?
Living
• Dorm? • Home?- Single?
Organization • Aides- Carbon-based- Silicon-based
Social• Friends
- Parties- Appropriateness
A.SUniv
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A.S.
Univ
Looking For The Right College (Cont.)
Preparation
• Documentation…
- Appropriate
- Recent
- Suggestions for reasonable accommodation
Issues to consider
• Is assistance needed with…
- Academic Accommodations
- Independent Living Skills
Questions that need answering
• Where is the office of student support?
- What is needed to obtain accommodations?
- Are they friendly?
- Do they know what AS is?
- Knowledgeable?
- Willing to learn?
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M a k i n g C o l l e g e R i g h t (Cont.)
A C C O M M O D A T I O N S W O R K S H E E T
Visually over stimulating, gets lost in all the words.
1. Only one question per page.
2. Two sheets of paper to cover distracting verbiage.
Perception of 60Hz cycling due to visual sensitivity
Explore alternate lighting, sit next to window, wear baseball cap in class.
Taking tests with multiple questions per page.Unable to concentrate under fluorescent lights.Scheduling long term assignments.
Poor executive function.
Regularly meet with professor (perhaps once a week) to keep on target with lengthy assignments.
Name: Any Student School: Any State College
Counselor: Unnamed Somebody Date: August 15, 2009
Challenge Cause Suggested Accommodation
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A.S.
Univ
M a k i n g C o l l e g e R i g h t (Cont.)
REALITY CHECK(Lorraine Wolf)
Colleges are in the business of education
College are not rehabilitative institutions
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W H A T M I G H T B E L I K E T O H A V E A D I S A B I L I T Y I N A C O L L E G E
C L A S S R O O M ?
Let us find out...
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D I S A B I L I T Y I N T H E C L A S S R O O M
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.
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D I S A B I L I T Y I N T H E C L A S S R O O M
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.
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IN CLOSING…
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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
It’s all in the
journey
You are exactly where you need to
be right now
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www.autismasperger.net