autism spectrum disorders: foundations for understanding and service provision in post- secondary...

Autism Spectrum Disorders: Foundations for Understanding and Service Provision in Post-

Secondary EducationLisa King, M.Ed.

Jane Thierfeld Brown Ed.D. (in absentia)

Lorraine Wolf Ph.D. (in absentia)

[email protected]

612-730-1806

March 25, 2010

Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce

mailto:[email protected]


They:• can’t read the entire chapter because it’s “irrelevant”• score 35 on the ACT’s• make poor choices: can’t get off the internet long enough to study • are fluent in four languages (self-taught)• can’t turn in the paper because it’s not perfect• could have written the textbook• don’t learn from mistakes: take 20 credits each semester then crash• find the cure for the common cold• can’t “repair” or change course after acquiring new info• can’t remember to refill or take their meds• have 150 IQ’s• get lost on campus on daily basis

Is this your student?……….


Male Logical Spatially aware Honest Detail Oriented Eye contact issues Thorough Independent Thinker Clumsy Efficient

FocusedLonely or sadAppears rigidDisorganizedSensory aversiveBright, especially in areas of interestDoesn’t see others point of viewUses odd phrases or gestures

The Modal AS Student


Umbrella of Autism Spectrum Disorders is a disability Umbrella of Autism Spectrum Disorders is a disability category of neurological disorders characterized by “severe category of neurological disorders characterized by “severe and pervasive” impairment in several areas of development.and pervasive” impairment in several areas of development.

Significant Impairments in 3 core behavioral features or Significant Impairments in 3 core behavioral features or indicators…indicators…

1.1.Social interaction Social interaction 2.2.Communication Communication 3.3.Restricted repetitive and stereotyped patterns of Restricted repetitive and stereotyped patterns of behaviorbehavior

Wide range of severity in behavioral and learning profilesWide range of severity in behavioral and learning profiles

The borders: Autistic Disorder, Asperger's Disorder, The borders: Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder (CDD), Rett's Disorder, Childhood Disintegrative Disorder (CDD), Rett's Disorder, PDD-Not Otherwise Specified (PDD-NOS), others… PDD-Not Otherwise Specified (PDD-NOS), others…

Autism Spectrum Disorders


Aspergers Syndrome

Normal to (way) above average IQ

Mildest end of spectrum

Best prognosis

No language delay (clinical criteria)

Shadow syndromes range into normal

Einstein, Mozart, Gates?


Autism Goes to College

Increasing numbers on campus

Not like other college students with disabilities

Accommodations typically needed in social and

executive areas vs academic

Support needed in the extra-academic campus

experience

Environment presents barriers


Incidence: The number of children in Minnesota diagnosed with Autism Spectrum Disorders increased 1,291% from 1993 to 2003- Department of Education, 2003

One in 100 is diagnosed with an Autism spectrum or related disorder-Center for Disease Control, July 2009

Popular press (Wired, Time magazines, Amazing Race, etc.)

DSM IV - Asperger’s Syndrome added as new diagnosis in 1994.

Programs/Services: Gersch Academy, College Living Experience, MN Life College, Marshall University, etc.

Strategic Education for Asperger’s Students -Thierfeld Brown and Wolf, 2005University of Minnesota, UCONN, Storres Campus

Statistics

Incidence or Prevalence?


Unique gifts and potential for societal impact

Potential to drain time, energy, resources of

institution

Low incidence high maintenance

Paradigm shift: environment is the barrier

Ready or not, here they come!

Why should we pay attention?


Why Can’t He Get it Together?

Imagine if you processed pieces of the environment in the order they came in and could not organize these bits?

Imagine if you screened out many of the bits because they confused or overwhelmed you?

What if you could not rely on consistency in your sensory environment?

Imagine if you could not fathom how other people do it any differently?

What if everyone is expecting or demanding that you comply with things you don’t understand?


DistractibleUnable to “know” what other’s want from meConcrete – black and whiteHighly knowledgeable about certain topicsExcellent memory for things that were said, seen, heard, from a long time ago – many of wouldn’tRemember (pros and cons)I show little to no care or interest in interest areas of my friends and familyProblems generalizing across settingsRule-boundFrom Leppicello, Mitch. LICSW 2006

What’s it like to think like AS?


Many negative experiences: trauma - big “T” and little “t”

Bullied, teased, ridiculed by peers, siblings, by adults: often coaches and teachers

General sense and feeling of being lost and confused for sometimes decades of their life. Misdiagnosed and mistreated from mental health to education; many professionals

For most young adults on the autism spectrum, depression and anxiety are daily facts of life.

Growing up with AS

Robin McLeod and Mitch Leppicello for U of M, 2005


Remember, depression and anxiety are daily facts of life.

There are no meds for AS,only help to manage other symptoms

Behaviors that resemble symptoms of depression and anxiety may be functioning as sensory regulation strategiesMcLeod, Robin for U of M 2005

Co-Morbid Conditions


Oops, Wrong Planet

Syndrome

Being autistic means that when the person entered this world, no one gave him (or her) “the orientation manual for extraterrestrials!”

Jim Sinclair: http://web.syr.edu/~jisincla/bridging.htm


Neurotypical Disorder (NTD)Is a neurobiological disorder characterized by

preoccupation with social concerns, delusions of superiority, and obsession with conformity.

Impairment in independent social interaction delusional “awareness” of others’ feelings abnormally seeks comfort from others when distressed imitates others mindlessly (waves bye-bye) obsessive rigidity regarding social conformity phobic avoidance of being different

From: http://isnt.autistics.org/


Major Skills Expected from ALL Beginning College StudentsClassroom Preparation:

Study habits/ test taking skillsSelf advocateOrganized

Social Skills: Interact according to social norms Deal with criticism, peer pressure Use telephone and email effectively

Independent Living Skills: Locate help when needed Use leisure time effective Carry out basic tasks: laundry

Budgeting, managing money

Adapted from Technology for Transition: College Planning State University of New York at Buffalo

Theories of cognitive challenge for AS

Executive functioning (The

Conductor in the orchestra)

Frontal lobe functions:– Emotional-Regulation– Inhibition of Impulsive Responding– Planning & Organization– Goal Directed Behavior– Attention– Problem Solving– Working Memory– Shifting Set

Theory of Mind

Central Coherence

http://www.brainfoundation.org.au/images/brain.jpg


“Can he PASS the course?He could have written

the textbook!

But…it doesn’t matter if he can’t get to class!”

Quote from physics professor, U of M


Gaining Admission is NOT

the issue……………

It’s completing a degree !

Wolf, Thierfeld Brown, King Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce

Typical path of new students with AS:

Special Ed is all done No more disability I want to be like everyone else STRESS I am overwhelmed What’s wrong with me Depression, isolation CRASH Cleaning up “the mess” Lost time, money, resources maybe irreparable damage…

Then hopefully……. Maybe I do need support


Domains affected:

SocialCommunication (Language)Behavior

Other Associated Features:

Motor clumsiness

Perceptual difficulties (visual)

Sensory sensitivities

Organizational and planning deficits

Depression/anxiety

Areas of Impact Overlap

Social

Behavioral

Cognitive/Language

Adapted from Bishop, 2001


Assume that you know very little about the person’s experience. You cannot guess what their experience is based on your experiences of similar situations.OCALI

When you have met one person with Aspergers……You have met one person with AS.Stephen Shore


Where we see the impact: Academic Matters

Being overwhelmedUse of the syllabusTime management issuesMulti-tasking issuesGroup workInitiation issuesThe paradox of deadlinesHomeworkTaking notesPerspective takingTutoring and issues associated with it


Essay questions

English courses and courses requiring

papers

Writing papers vs. writing “the obvious”

Peer editing

Writing per assignment vs. a novel

Writing Specific Issues


Where we see the impact:

BehaviorsInterruptions or calling out

Correcting instructor

Out of seat

Sensory integration

Mannerisms or noises

Classmate attitudes or reactions

Meltdowns or outbursts


College personnel will likely face:

Behavior issues: odd, offensive, awkward

Social issues: complaints related to interacting

with others

Emotional issues: anger outbursts, meltdowns

Learning issues: not wanting to do homework,

misunderstood assignments

DS and staffs role: reassure faculty


An Intellectual Map

Most Behaviors serve a purpose

Find the commonalities in the triggers

Target the behavior

Develop:

accommodation plan

scripts to cope

rules to manage behavior


Where we see the impact:

Extra Curricular

Housing and residential life

Social and interpersonal

Navigating the environment

Clubs, joining and involvement


Navigating social interactions

Reading facial expressions

Understanding tone of voice

Teasing versus sarcasm

Understanding casual chit-chat

Ending conversations

Round peg in a square hole


Research FindingsSocial competence is associated with acceptance by peers, positive self concept and successful employment

Social skill impairments are most critical for high functioning students

Once students leave school “situations requiring social competence tend to far outnumber those requiring academic skill”

(Canney & Byrne, 2006)

ASD and Second Life

Texas researchers believe that people who have Asperger's Syndrome may have found a new therapy in an unlikely place: the online virtual world Second Life. As a treatment, professionals take patients through a series of exercises, in groups and individually, designed to help them learn social skills. In the center's new therapy, patients may have a job interview with a "boss" character or learn to ask another avatar out on a date.

http://abcnews.go.com/Technology/OnCall/Story?id=4133184&page=1

http://abcnews.go.com/Technology/OnCall/Story?id=4133184&page=1

STRESS

Typical Stressors at College

• The seat you usually sit in is taken when you get to class.

• You have to look for a different parking spot every day. • They are out of the foods you eat when you get to the dining

hall. • The professor has left a note on the classroom door

explaining that class will be held in an alternative building today.

• You are called upon in class to discuss a reading with a student next to you.

• The class you are taking is a summer school class but your college calendar only shows the dates for fall and spring semester.

• The bookstore does not have the book you need when you arrive to purchase it.

• Your C.A. tells you there have been complaints about your hygiene.

copyright Wolf, Thierfeld Brown, Bork 2009Wolf, Thierfeld Brown, King, Bork, 2008 CollegeAutismSpectrum.com Do Not Reproduce

Stress & Higher EducationIncrease academic demandAway from home in new environmentSleep & eating changesIdentity crises Changed family dynamicFinancial burdensSocial changesNew people, ideas, expectationsAlcohol & drugsSexual identityPrepare for postgraduate life, career uncertain

Adapted from NIMH 1997


Lack of clarity Lack of clarity

Being misunderstood Being misunderstood

Social situationsSocial situations

Confusion/chaosConfusion/chaos

Unstructured timeUnstructured time

Having to rushHaving to rush

Change/noveltyChange/novelty

Having things not go the Having things not go the

way you wantedway you wanted

NEW + Change = STRESS!!!

The Incredible 5 Point Scale

Social narrative that teaches a student about :

• How to manage Stress

• Determine appropriate social Behaviors

** See A 5 is Against the Law


Author: Kari Dunn Buron

Kari Dunn Buron’s books


Sensory Integration Dysfunction

Lights

Music

General dorm or noise

Fire alarms

Touch

Behaviors/causes/misinterpretation

Sensory Area

Calming Activities

Alerting Activities

Tactile Wear soft clothing like sweat pants.Squeeze resistive puttyWear ankle weights or weighted vest

Handle fidget itemsHold something coldWash face with cool clothLight touch to the palm of the hand

Proprioceptive Push heavy objectPush a heavy cartCarry boxesVacuum the floor

Deliver office mail, papers.ExercisePick up trash in hall ways

Vestibular Rock in a rocking chair

Gustatory Chew, suck on a pen top, necklace, hard candy.Suck liquids through a straw.Drink warm liquids

Eat crunchy foods-pretzels, ice, carrots, celery, apple.Eat chewy food-licorice, taffy, gum.Keep water bottle with cold water on desk

Olfactory Write with a scented pen or marker.Smell potpourri, scented candle.

Use scented lotion or soapSpray a citrus room deodorizer

Auditory Listen to quiet music with slow, even beat.Listen to soft singing or humming.Work in a quiet environment Use headphones to block noise.

Prepare in advance for loud, strange noises (startle).Listen to music with varied pitch, loudness or uneven beat.Speak in animated high and low voice.

Visual Work in dim light or with no lights.Work at distraction free desk.Work in natural light.

Work in bright light.Use colored paper.Use highlighter.

Adapted from Simple Strategies That Work! p. 18-19. www.asperger.net

http://www.asperger.net/

Behavior Cause (mis)Interpretation

Head on desk Sensory overload Rude, sleeping

Mimics or recites back Time to process Not taking speaker seriously

Great expressive skills Compensates for receptive skills

Overestimation of functioning

Odd speaking habits Pragmatic Language deficits

Inappropriate

May not respond to facial expressions, tone

Difficulty with non-verbals

Leads to miscues in assignments

Does not recognize you

Limited facial recognition

Aloof, rude

May not shift topic on cue

Does not automatically catch on

Self-absorbed, uninterested


HYPER or HYPO

Too Much or too Little?

Sensory issue/ possible strategies

Think in terms of “replacing” rather than

“extinguishing”for inappropriate behaviors

Examples: Chewing gum vs. constant nose-blowing Carpet swatch under desk vs. picking at skin Doodling on paper vs. head down during

lecture Sprig of rosemary vs. smelling armpit


Lose the counselor hat “how do you feel?”

Develop rapport first: find the “hook”

Use visuals: maps, write things down

Use formulas: “if….then…..”

Dry humor, wit

Remember: PTSD ( hx of little “t’s” through life)

Consider mentors

Use “rules”

Advice for Support Staff:


Like father, like sonGreat memory for all that’s gone wrong (hx of little “t’s”)

Unreasonable requests

To parents, “services” = “program”

Helicopter…?

Time on front end = insuranceWrite things down

Clarify roles

Have agendas for meetings

Use same strategies you use for student

Working with the family


Transition issues: The newness of your campusSize and Culture

Navigating campus

Unfamiliar terms: “Registrar’s Office and Bursar’s Office

Campus expectations: students managing their own business as adults

Schedules different from what the students are accustomed to having

Syllabus: importance and use of to manage one’s time


The importance of building Trust

Get into the world of student : Find the

hook!

Increase awareness of strengths before

addressing deficits

Link skills to the students goals

Use of assigned readings: AquaMarine

Blue #5


Generate options for dealing with stressful situations (emphasize options and effective)

Encourage a willingness to ask for help

(“The smartest people ask for help”)

Increase the skill of identifying who can be helpful in different situations


Tools for the student

Provide student with DS “handbook” Maps Contact info: profs, T.A.s, DS, health

center, writing center, etc. Campus spending account Grade tracking forms Calendar (time management) Organization training

Ann Palmer, parent of AS, TEAACH


Lose the counselor hat “how do you

feel?”

Develop rapport first: find the “hook”

Use visuals: maps, write things down

Use formulas: “if….then…..”

Dry humor, wit

Remember: PTSD ( hx of little “t’s”

through life)

Consider mentors

Advice for Support Staff:


An Intellectual Map

Most Behaviors serve a purpose

Find the commonalities in the

triggers

Target the behavior

Develop:

accommodation plan

scripts to cope

rules to manage behavior


Developing Scripts

Learning to be a good advocate

Teaching negotiating strategies

Working with others for problem

solving

Employment on campus?

Working with peers

Members of the opposite sex

Getting started in organizations


SCRI PTS for solving problemsClassroom Problems

THE SITUATION OR ISSUE: STEP ONE:Identify problem

STEP TWO:Determine Solutions

STEP THREE:Who can help

My lab partner does not show upand I have to do the lab alone.

Anxiety and distraction due tounexpected change in routine.

1. Ask to leave class for a fewminutes to calm down2. Use relaxation techniques3. Talk to TA or professor todetermine options4. Join another group

1. Myself / Self-help2. Professor or TA

College Autism Spectrum 3/09


In theory…

• Academic difficulties in AS directly related to deficits in integration, executive dysfunction, and self-regulation

• If we understand why, we can figure out when and how to best accommodate


Support for Student

Help make the unfamiliar more familiar

Pictures

Maps

Repeated visits

Familiar routines in new places


Clear Behavioral Requirements

Behavioral standards & expectations must be

explicit

Student & family need to understand because

this is different from high school

Standards are not subject to accommodation

Make sure student understands the rules and

the consequences for breaking them

Written communication!


Good Night!

Do 5-10 minutes of cleaning (start in bathroom)Lock doorsTake medicationFill pill case. If you need refill, put in palm pilotPut socks in washerHang clothes if dryer is fullCheck Palm for tomorrow's scheduleBrush teethDo you need to use the bathroom?Put glasses on the bathroom counterGo to bed! Zzzzz.... http://www.thiswayoflife.org


Organization: have a clear beginning and end

Predictability, Structure, and Routine can never be under-estimated

Visual Supports are helpful, regardless of how many times one is verbally given the message or asked a question

Importance of Structure


Learning to use a Schedule

Clocks or Timers Clocks or Timers can help with can help with waiting ….if events waiting ….if events occur at a occur at a predictable timepredictable time


Resource Notebook

Financial information: spending account, bank account numbers, bank location and phone number, etc.

Employer information: rules, breaks information

Important contacts: job coach, instructors, mentor, etc.

Social options- list of free time activities, club and organization information, info on upcoming social events

Medical info: doctor’s contacts, meds, dosage


Developing Scripts

Learning to be a good advocate

Teaching negotiating strategies

Working with faculty for problem

solving

Employment on campus?

Working with peers

Members of the opposite sex

Getting started in organizations


Policies and Procedures

Know and use the student conduct code

Create rules sheet

Create social/ res life reminders

BE SPECIFIC and concrete

Scripts: Fire Drills, lock downs


When working with students with AS, remember:

Consistency, Structure and Predictability

Honor who they are; prioritize challenges based

on impact on life/job or course

Use special interests or fascinations whenever

possible; find their “hook”

Visuals remain constant, words do not

What’s obvious to you is not to AS, explain

Adapted from Dorothy Lucci, MGH/YouthCare, 05.


When working with students with AS, remember:

If you have met one person with AS, you have met one person with AS

Be clear and direct in communication: say what you mean; mean what you say

Provide big picture and details: why are we doing what we are doing

Don’t assume what’s in your head is in theirs: check it out

Adapted from Dorothy Lucci, MGH/YouthCare, 05.


Questions and Comments

Thank you for coming.Lisa King, M.Ed.

Higher Education and Autism Spectrum Disorders, Inc.612-730-1806

[email protected]

www.CollegewAutismSpectrum.com

mailto:[email protected]

autism spectrum disorders: foundations for understanding and service provision in post- secondary...

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