effective advocacy & disclosure a workshop for …...1. strengths & challenges 2. rack em up...
TRANSCRIPT
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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.
SCANADVOCATEDISCLOSE
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
Individual or Group?
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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
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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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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 6
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
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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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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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 8
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
Enter PutnamCondition improves to “neurotic”The wonderful world of watch motorsEcholalia and return of speechEating baby food
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
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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?
Engaging the StudentLEARNING ADVOCACY THROUGH THE IEP
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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
Engaging the StudentLEARNING ADVOCACY THROUGH THE IEP
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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
A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 13
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
Enter PutnamCondition improves to “neurotic”The wonderful world of watch motorsEcholalia and return of speechEating baby food
Kinder-garten Social & academic difficultiesDiscovered making a mess of myself while eating BBQ chicken wingsLoved cats but dogs…Yikes bikes!
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
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Interests, Relationships &
Community
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ADVOCACY IN LAW ENFORCEMENT
What could have been done differently?
35Was there successful advocacy here?
ADVOCACY IN LAW ENFORCEMENT
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ADVOCACY IN LAW ENFORCEMENT
Individual or Group?
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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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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
Enter PutnamCondition improves to “neurotic”The wonderful world of watch motorsEcholalia and return of speechEating baby food
Kinder-garten Social & academic difficultiesDiscovered making a mess of myself while eating BBQ chicken wingsLoved cats but dogs…Yikes bikes!
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
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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