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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