effective advocacy & disclosure a workshop for …...1. strengths & challenges 2. rack em up...

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EFFECTIVE ADVOCACY & DISCLOSUREA workshop for people on the

autism spectrum

Westborough, MA

16 November 2019 — 1315-1445, 1500–1630

PRESENTED BYStephen Shore, Ed.D.

[email protected]

SCANADVOCATEDISCLOSE


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AREAS OF ADVOCACYOverview

What we are doing now to prepare for successful advocacy?

Awareness of Need

Advocacy Effort

Disclosure

Interdependent Living for

Education

Community

Relationships

Residential

Employment

Developing an Advocacy Plan

• Environmental• Cognitive• Social-Emotional

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INDIVIDUAL CONTRASTED WITH GROUP ADVOCACYOverview

Individual Group

Making individual needs known in a way that others can understand and provide support

Making group needs known in a way that others can understand and provide support

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ADVOCACYIndividual or Group?

She is autistic She has autism

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IdentityFirst

PersonFirst

Individual or Group?

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The 4 A’s of Autism

APPRECIATIONACCEPTANCE

AWARENESS

What Actions will you take to climb the stairs of Awareness, Acceptance, and

Appreciation of people with differences in your lives?

ACTION


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A little about me…

WHERE DOES AUTISM COME FROM?

Where oh where did this autism

come from?

Oh where oh where can it be?

With mysteries cut long and eye contact

cut short?

Oh where oh where can be from?

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A L I T T L E A B O U T M EIntroduction

The Autism Bomb

Loss of speech

&tantrums

Environmental withdrawal

Self-stims

The Autism Bomb — NOT

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EXAMINING THE PARAMETERSQuestions to ask regarding possible areas of success

Abilities?

Interests?

Kind of Mind?

Characteristics?

Match to Ad/vocational Possibilities

How does the s/he spend most of their time?

Reframe• Communication

• Socialization

• RestrictedInterests

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Enter Putnam

Condition improves to “neurotic”The wonderful world of watch motors

Echolalia and return of speech

Eating baby food

A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 4

Typical develop-mentTurn over at 8 daysRapid physical and motor develop-ment

Autism bomb hitsWithdrawal from environmentTantrums

Putnam evaluation of atypical development, strong autistic tendencies & psychoticEarly intervention from parents who refute recommendations for removal from home

AGE 0 1.5 2.5 4 6 8 10 13 19E

V

E

N

T

S Self Awareness

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S U C C E S S W I T H A U T I S MSet the Stage for Self-Determination

Condition improves to “neurotic”The wonderful world of watch motors

Self Awareness

Which Sets the Stage for Disclosure…

Acting as the primary casual agent in one's life and making choices and decisions regarding one's quality

of life free from undue external influence or interference

(Wehmeyer, 1994).

Kindergarten

Social & academic difficulties

Discovered making a mess of myself while eating BBQ chicken wings

Loved cats but dogs…

Yikes bikes!

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Enter PutnamCondition improves to “neurotic”The wonderful world of watch motorsEcholalia and return of speechEating baby food

AGE 0 1.5 2.5 4 6 8 10 13 19

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V

E

N

T

S

BB

B

Disclosure & Advocacy

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DISCLOSURE

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C H A L L E N G EWhat

about

the Autism Spectrum (& other NDDs)

makes

it

particularly

challenging

to

disclose?

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D I S C L O S U R E

The issue of disclosure begins…

…As soon as it is known that a person has a difference in their way of being

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LIVING IN TODAY‘S WORLD

REALITY CHECK

Most people are busy with living

Most people are not in the mindset of

accommodating people with differences

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F O U R S T E P S T O D I S C LO S U R ESelf-Determination —> Disclosure —> Self-Advocacy

1. Awareness of strengths and challenges through verbal, pictorial, and other communication.

2. �Rack up� strengths and challenges.

3. Non-judgmental comparison of characteristic with others and potential role models.

4. Present the label summarizing a condition rather then a name for a set of deficits.

Making ones needs known in a way that others can understand and provide support.

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F O U R S T E P S T O D I S C LO S U R EPlanning for Disclosure

1. Awareness of strengths and challenges__________________________________________________________________________________________________________________________________

2. �Rack up� strengths and challengesStrengths Challenges

________________________________________________________________________________________________________________

________________________________________________________________________________________________________________

3. Nonjudgmental comparison____________________________________________________________________________________________________________________________________________________________

4. Present the label summarizing the condition________________________________________________________________________________________________________________________________________________________________________________________________________________

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Kinder-garten Social & academic difficultiesDiscovered making a mess of myself while eating BBQ chicken wingsLoved cats but dogs…Yikes bikes!

Cracking rocks

Special interests in astronomy and weather

Teacher concerns for reading and math difficulties

AGE 0 1.5 2.5 4 6 8 10 13 19

E

V

E

N

T

S Interests and Strengths

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Disclosure – Telling another one is autistic

José is good friend of yours and you always knew he was a bit different, yet you like him and accept him for who he is – quirks and all. A stellar student, he aces his math tests, and as a trombonist in the band, memorizes his music after a quick glance. However, in gym class, José is complete flop. Even though he does well in bicycle racing and would probably excel in track, José performs poorly in baseball and other team sports. As a result, others have begun bullying José in the locker room, between classes, during recess, and after school. Last week, José told you of his recent Asperger Syndrome diagnosis which explains his skills in math, music, and solitary sports and his challenges in team sports –perhaps due to difficulties in reading nonverbal communication and motor control.You and José both now agree that disclosing the recent Asperger Syndrome diagnosis to the physical education teacher – whom you both trust – is necessary to stop the bullying.

– Help José plan how to tell another he is autistic –

Help José prepare his disclosure of Asperger Syndrome to his physical education teacher using the 4 step disclosure process.

1. Strengths & Challenges2. �Rack em up�3. Nonjudgmental Comparison4. Present the Label

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Meaningful Disclosure

27 year old Ted has been asking why co-workers make fun of him during breaks, sees an occupational therapist weekly, takes an 10 full minutes address an envelope legibly , and to explain his general clumsiness at work. You notice that over the last month Ted’s questions have become more frequent.Additionally, Ted no longer goes to the movies with you – his only friend – and has lost interest in train-spotting downtown, and generally seems listless. Ted’s supervisor indicates he no longer helps his coworker Deb in mathematics in exchange for her assistance in drafting memos. Somehow, Deb has the ability to help Ted organize his thoughts for writing these messages to clients in a way no one else can.As Ted’s friend, you decide to have a conversation with Ted to help him understand what having autism means to him.

—Disclosing what autism means to Ted—

Help Ted’s friend plan his discussion with Ted to help him understand what having autism means to him, emphasizing his characteristics while honoring strengths using the 4 step disclosure process.

1. Strengths & Challenges2. �Rack em up�3. Nonjudgmental Comparison4. Present the Label

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EFFECTIVESELF-ADVOCACY

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SELF-ADVOCACYYou’re Lost… And you ask someone for directions…

“After the 6th light you look for the big tree on the left and take the third right. Then after the second church you see a fire station and go left. After going left you take a right at Tom Street. Drive for 4 blocks and keep bearing right until you see a stream on left which tells you to take a bridge on the right headed towards the water tower. When you pass the water tower take he second left and pull into a parking space in front of International Bicycle Shop and you are there!

Wow!!! Too much to remember! What are you going to do?

1. You suddenly realize there’s way too much information for you to remember2. Hold on a moment! Can you

wait a moment while I get something to take this down?

SCANNED

3. I won’t remember it all! Thanks for waiting…

ADVOCATEDDISCLOSED

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WHAT & WHEN OF EFFECTIVE SELF-ADVOCACY

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.

When the effect of being autistic or having another condition significantly impacts a situation or relationship and there is a need for better mutual understand, it is time to build an advocacy plan.

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ADVOCACY IN GRADE SCHOOL

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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/>

StudentʼsIEP

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

StudentʼsIEP 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

Engaging the StudentLEARNING ADVOCACY THROUGH THE IEP

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INFORMATION ABOUT MENote: This form is not required by IDEA

My Name_________________________Date ____________________________

My disability is…

My strengths are…

I have difficulty with…

I learn best…

I would like to learn about…

Accommodations I need and will use are…

www.cec.sped.org

IEPsA Guide for Student Involvement

Student-Led IEPs

Council forExceptionalChildren

The College of Education& Human Development

UNIVERSITY O F MINNESOTA

Marcy McGaheeChristine MasonTeri WallaceBonnie Jones

MY STRENGTHS AND NEEDSNote: This form is not required by IDEA

My Name_____________ Date ______

Class: __________________________

Teacher _____________________

What I do well?

What helps me do my best?

What do I need to do even better?


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N I C H C Y

TECHNICAL ASSISTANCE GUIDE

Helping StudentsDevelop Their IEPs

Partial Table of Contents• Laying the Foundation• Introductory Work with Students• Introducing the IEP• Writing the IEP• Getting Ready for the IEP Meeting• During the IEP Meeting• After the Meeting

www.nichcy.org

N I C H C Y

AStudent’s Guide

to the IEP

Partial Table of Contents• What is an IEP? • How do I develop my IEP? • What to do before the IEP meeting • Writing the IEP • Getting ready for the IEP meeting• Participating in the IEP meeting • After the IEP meeting


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SIX STAGES TO SELF-ADVOCACYAdapted from

Sibley, K. “Help m

e help myself.”in Stephen Shore (ed.). Ask

and tell: Self-advocacy and disclosure for people on the autism spectrum

.Shaw

nee Mission, KS: Autism

Asperger Publishing Com

pany.P. 35.

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SIX STAGES TO SELF-ADVOCACY

Adapted from Sibley, K. “H

elp me help m

yself.”in Stephen Shore (ed.). Ask and tell: Self-advocacy and disclosure for people on the autism

spectrum.

Shawnee M

ission, KS: Autism Asperger Publishing C

ompany.P. 35.

1. Planning and Modeling: After involvement with the planning for their own self-advocacy, the person observes the partner engage in the act of advocating.

2. Facilitation and Confidence Building: Facilitator serves as a guide for the self-advocacy process and remains ready to step in as needed.

3. Partnering and Letter Writing: Equal sharing of advocacy responsibilities. Advocate takes the lead as facilitator offers strong guidance, moral support while the person does most of the advocating. Letter writing.

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SIX STAGES TO SELF-ADVOCACY

Adapted from Sibley, K. “H

elp me help m

yself.”in Stephen Shore (ed.). Ask and tell: Self-advocacy and disclosure for people on the autism

spectrum.

Shawnee M

ission, KS: Autism Asperger Publishing C

ompany.P. 35.

4. Moral Support: Partner continues to assist with the preparation. The advocate does most of the talking with the partner nearby to assist if needed.

5. Taking the Lead: The advocate leads the entire process with assistance from the facilitator but only under the self-advocate’s direction.

6. Independent Self-Advocacy: The advocate undertakes all the preparation, presentation, and evaluation in a completely independent manner.

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Brenda the Hitter – Case Study

While waiting in line ordered by height Brenda, who is in 8th grade, often hits other students and be accused of starting fights. Her usual response: “He or she bumped or hit me first!”

—What do we do now… and teach her to advocate later—

Three-Step Process for Self-AdvocacyBuild the foundation ——> Awareness1. Scan Sensory issues2. Advocacy plan Inform another of

one’s needs in a way they can provide support

3. Disclosure The reason why

Choose one of the six stages of self advocacy…1. Planning and modeling2. Facilitation and confidence

building3. Partnering and letter writing4. Moral support5. Taking the lead6. Independent self-advocacy

1. Arrive at a possible explanation of this behavior, and, 2. what might be done about it in class?FIRST

SECOND







Cracking rocksSpecial interests in astronomy and weatherTeacher 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 schoolFinally getting it together but still often in left fieldDiscovering the band roomTime to focus more on people and not their bicycles

AGE 0 1.5 2.5 4 6 8 10 13 19

E

V

E

N

T

S

Interests, Relationships &

Community

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ADVOCACY IN LAW ENFORCEMENT

What could have been done differently?

35Was there successful advocacy here?


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MY ADVOCACY PLAN Name ____________________SCAN: Where is the challenge?

1. Sensory2. Cognitive3. Socio-emotional

ADVOCACY:DISCLOSURE:

Perception of the environmentHow we thinkSocial cues and how we feelExplaining your needsGiving 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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Helping Dot Advocate for Herself - Case Study

Having just been moved from barely tolerable distraction of a shared office space to a cubicle of her own, 18-year old Dot is very proud of her new �digs.� However she quickly realizes the productive work will be impossible for her due to her fluorescent light sensitivity. Her supervisor, while impressed with her work, does not know that Dot has Asperger Syndrome; and with it a sensitivity to fluorescent lights. As Dot’s friend you realize that it is time for her develop an advocacy plan.

—Developing an Advocacy Plan—

Please help Dot work through and develop a three-step advocacy plan.

1. SCAN –––––––> Find the challenge• Sensory Perception of environment• Cognitive Thinking style• Socio-Emotional Social cues & how we feel

1. ADVOCACY ––> Explain your needs Mutual understanding/trust2. DISCLOSURE -> The reason why Partial or full

Clarity of communication

What is causing the challenge?

Explain needs Enable others to provide support

• Sensory• Cognitive• Socio-emotional

Full PartialThe diagnosis or just the aspect causing concern

Noting when challenging situations are encountered

The House of Self-Advocacy

DisclosureBetter Mutual Understanding & Trust

SELF-AWARENESS

Scanning the Environment

Developing & Implementing an Advocacy Plan

Fulfilling and Productive Life

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Disclosure – Telling another one has autism

The best teller in the bank, George never uses a calculator and has cashed out to the penny for the past 15 months. He is also the first to help others having difficulties balancing their books, much to his coworkers’ gratitude – especially to Jane who is the bank’s star person to go to when there is a customer dispute.However George has dozens of notes stuck chaotically all over teller window and workspace. Conversations with his supervisor about an orderly workspace result in George indicating the necessity of these notes for remembering complicated bank procedures. Given his great efficiency and good nature, the branch supervisor leaves George to his work, albeit mystified. A manager from corporate headquarters is coming next week. As a result, the supervisor has asked George to make an appointment with him to discuss the necessity of a clean, organized work space. Until now, George has never felt a need to disclose having autism to anyone. Given the recent turn of events, George now realizes perhaps this time has come.

—Help George plan how to tell another he has autism—

Help George… 1. understand his needs using

the 4 stages of self-disclosure, and,

2. The 3 step model for self-advocacy.

Self-Disclosure Process Self-Advocacy1. Strengths & challenges, 1. Scanning2. �rack em up�, 2. Advocacy3. nonjudgmental comparison, 3. Disclosure4. present the label, a. full

and…, or…5. develop an advocacy plan b. partial

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Cracking rocksSpecial interests in astronomy and weatherTeacher 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 schoolFinally getting it together but still often in left fieldDiscovering the band roomTime to focus more on people and not their bicycles

CollegeMore friendsDatingOthers really do think differentlyUtopia!

AGE 0 1.5 2.5 4 6 8 10 13 19E

V

E

N

T

S

Professor of Special Education at Adelphi UniversitySheltered Workshop for People with Asperger Syndrome

S U C C E S S W I T H A U T I S MA CLOSER LOOK AT MY

PLACEMENT ON THE AUTISM SPECTRUM — ADULT

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ADVOCACY IN COLLEGE

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Self-Initiated Individual Education Plan (Cont.)

Accommodation MenuNote: This form is not required by IDEA

Student: __Somebody___________ Date: ___10/28/19_____________

Teacher: __Anybody____________ IEP Manger: __Everybody_______Effectiveness Effectiveness

Used? (1-5) Accommodation Used? (1-5) AccommodationPlacementPreferential

seatingSmall group

AssignmentsReduced paper/

pencil tasksExtended time

SensoryLightingHat with visorStanding at desk

OtherOutline with due dates for assignments

√

√

4

5

√

√

2

5

Adapted from McGahee et al. (2001). Student-led IEPs: A guide for student involvement. Arlington, VA: Council for Exceptional Children in Shore (Ed). (2004) Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 91.

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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, 2020

Challenge Cause Suggested Accommodation

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TURNING AWAY FROM CLOSED DOORS TO OPEN ONESDefining Success

If you are productive and fulfilled with your life you are probably successful



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www.autismasperger.net

effective advocacy & disclosure a workshop for …...1. strengths & challenges 2. rack em up...

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