senses & sensibilities

SENSES & SENSIBILITIES

An Inside View on Sensory Issues and Developing Easy to Implement Solutions

Ohio Center for Autism and Low Incidence"

Columbus, OH

November 14, 2012

PRESENTED BY

Stephen Shore, Ed.D. [email protected]

www.AutismAsperger.net!

Sight!

Hearing! Tactile!

Taste!Smell!

Vestibular!(Inner ear)!

Proprioceptive!(Muscles & "

joints)!

Sight!

Hearing! Tactile!

Taste!Smell!

Vestibular!(Inner ear)!

Proprioceptive!(Muscles & "

joints)!

2!

A LITTLE BIT ABOUT ME

3!

A L I T T L E B I T A B O U T M E"Introduction!

The Autism Bomb!

Loss of speech

& tantrums"

Environmental withdrawal"Self-stims"

The Autism Bomb — NOT!

4!

Increasing Variability of Presentation!

Severe Moderate Light!

Kanner’s PDD-NOS HFA/AS!Rosenn, 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 • • • !

• • A u t i s m S p e c t r u m D i s o r d e r • • !

• • A u t i s m S p e c t r u m D i s o r d e r • • !

Global Delay"

T H E A U T I S M S P E C T R U M"

Social Com

munication

Disorder"

Transitioning from the DSM IV to the DSM V!

5!

A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — Adult"

Typical development Turn over at 8 days Rapid 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!

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Helping people with autism lead fulfilling and productive

lives to their greatest potential

Professor of Special Education at Adelphi University Sheltered Workshop for People with Asperger Syndrome 6!

EXPERIENCING SENSORY ISSUES • PROVIDING AN INSIDE VIEW •

S E N S O R Y O V E R L O A D A C T I V I T Y In groups of 5, each person plays a specific role. Start when given the signal "

Person #1: You play the role of a person with autism. Your job is to listen to what Person #5 is reading to you so you can take a test on the material. Try to ignore everyone else.

Person #2: Stand behind the student playing the part of someone with autism. Rub the edge of an index card (or piece of cardboard) against the back of their neck. You do not need to rub hard, but keep doing it over and over.

Person #3: Grab a book (any book will do), lean close to Person #1 and read in a loud voice the entire time.

Person #4: Pat Person #1 on the head and shoulder the entire time. Person #5: Using a normal voice, read a paragraph to Person #1 then ask them

questions about what you read. Do NOT try to drown out the other noises.

Have all the group members take a turn being Person #1. "• !How did it feel to have so much commotion going on?!• !Did it make you want to scream and run away?!• !Was Person #1 able to concentrate on the paragraph being read?!• !What might have helped?!Adcock, B., & Remus, M. (2006). Disabilities awareness activity packet: Activities and resources for teaching students about disabilities. Possibilities, inc, p. 4. Available on February 19, 2011 at http://www.vcu.edu/partnership/C-SAL/downloadables/PDF/DisabilityAwarenessPacket.pdf.!

S E N S O R Y O V E R L O A D A C T I V I T Y

Adcock, B., & Remus, M. (2006). Disabilities awareness activity packet: Activities and resources for teaching students about disabilities. Possibilities, inc, p. 4. Available on February 19, 2011 at http://www.vcu.edu/partnership/C-SAL/downloadables/PDF/DisabilityAwarenessPacket.pdf.!

1. How did it feel to have so much commotion going on?__________________________ __________________________ __________________________ __________________________ __________________________

2. Did it make you want to scream and run away? __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ __________________________

4. What might have helped? __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ __________________________ __________________________

3. Was person #1 able to concentrate? __________________________ __________________________ __________________________ __________________________ __________________________

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SENSORY ISSUES"What are they?"

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"Sensory integration is the neurological process of organizing the information we get from our bodies and from the world around us for use in daily life" (Kranowitz, 1998, p. 42).!

According to Dr. Ayres, "Over 80% of the nervous system is involved in processing or organizing sensory input, and thus the brain is primarily a sensory processing machine" (Kranowitz, 1998, p. 42). The brain modulates this input which in turn guides our activity level. Activity may be mental, physical or emotional.!

SENSORY PROCESSING"Making the World a More Sensorially Friendly Place!

11!

"Sensory integration dysfunction is the inability to process information received through the senses" (Kranowitz, 1998, p. 8).!

!… inefficient neurological processing. "The brain cannot analyze, organize, and connect -- or integrate -- sensory messages" (Kranowitz, 1998, p. 8). !!Not brain damage but rather “indigestion” or a “traffic jam” of the brain (Kranowitz, 1998, p. 50). !!Child may be hyper, hypo, or alternate between the sensitivities at any given time.!


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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"

Taste"Smell"

Vestibular"(Inner ear)!

Proprioceptive"(Muscles &

joints)!

S E N S O R Y V I O L A T I O N S!

• Fluorescen

t lights!

• Haircuts

• Bland food

s • Kiss

ing Dad

- Coffee and

beard

• Chirping b

irds

• 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!

13!

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…

Only likes certain types of clothing…

CHARACTERISTICS OF CHILDREN WITH AUTISM SPECTRUM CONDITIONS

Difficulty paying attention…

Clumsy…

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Making the World a More Sensorially Friendly Place!SENSORY PROCESSING"

15!


Transmission of Sensory Information" • All sensory information (except smell), first enters the brain through the

- Reticular Activating System (RAS) (bundle of nerves atop the brain) stem, including the

- Medulla Oblongata, the - Pons Varulii, and the - Midbrain.

• Here information is sifted and

decisions made whether a response is necessary and which information will be sent higher up (later) for further processing.

Adapted from Berger, D. (2012). Music therapy, sensory integration, and the autistic child. !London: Jessica Kingsley Publishers! 16!


Approximately 75% of

sensory information

is…"

D i s c a r d e d

Adapted from Berger, D. (2012). Music therapy, sensory integration, and the autistic child. !London: Jessica Kingsley Publishers!

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The remaining ~ 25% of information is transmitted from the RAS to the Thalamus and Limbic System."

The Limbic System is a sort of “ring” which includes the Amygdala and Hypothalamus."

If the information represents danger, then…"



Activating the Fear Response!"Hypothalamus"Pituitary!Adrenal!!Axis…"!In preparation for flight or fight survival response!

Adapted from Berger, D. (2012). Music therapy, sensory integration, and the autistic child. !London: Jessica Kingsley Publishers!

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If the information is perceived as not threatening…!!• tagged in the order

received by the hippocampus for additional processing!

!• Working memory!!• Areas of the neo-cortex!!• Permanent memory!



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C A S E S T U D Y

Keith: The Light Switcher!Seemingly at random during class, Keith would often run over to the light switch to turn it off. A frequent visitor of the principal’s office his response was “I don’t like those lights!”!

TASK!You, as a member of Keith’s team, please…

1.  Arrive at a possible explanation of this behavior, and,

2.  what might be done about it?


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Kindergarten

Social & academic difficulties

Discovered making a mess of myself while eating BBQ chicken wings

Loved cats but dogs…

Yikes bikes!

23!

A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 6"

Typical development Turn over at 8 days Rapid 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

AGE !0 !1.5 !2.5 !4 !6 !8 !10 !13 !19!E!

V!

E!

N!

T!

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C A S E S T U D Y

Robert: The Boy Who Threw Up in Gym!Upon entering the gym for physical education Robert would throw up. His aide would state “Throwing up in gym is unacceptable behavior. You need to go to time out.”!

TASK!You, as a member of Robert’s team, please…




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ASSESSMENT OF SENSORY ISSUES

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SENSORY PROFILE BY WINNIE DUNN & CATANNA BROWN!

A.  Taste/Smell Processing!B.  Movement Processing!C.  Visual Processing!D.  Touch Processing!E.  Activity Level!F.  Auditory Processing!

Low Registration

Sensation Seeking

Sensory Sensitivity

Sensation Avoiding


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SENSORY PROFILE BY WINNIE DUNN & CATANNA BROWN!Low Registration • High thresholds + passive self-regulation • Don�t notice what is going on around them,

because brain isn�t activating enough • May be withdrawn or difficult to engage • Need extra sensory input to be able to

participate in school activities

Sensation Seeking • High thresholds + active regulation

• Seekers add movement, touch, sounds, and visual stimuli to every life event to increase sensory input

• May lack caution in play, display excitability, and engage in impulsive behavior

Sensory Sensitivity • Low thresholds + passive self-regulation • Tend to be more hyperactive, distracted,

and easily upset • Have difficulty completing tasks as new

stimuli keep capturing their attention • Frequent disruptions in routine make it

difficult to learn

Sensation Avoiding"• Low thresholds + active self-regulation • Children actively work to reduce input in

order to avoid discomfort • Resistant and unwilling to participate in

activities, especially new ones


28

C A S E S T U D Y

Jeri: The Girl Who Started Fights in Line!While waiting in line, ordered by height, Jeri would often hit other students and be accused of starting fights. Her usual response: “He or she bumped or hit me first!”!

TASK!You, as a member of Jeri’s team, please…




29!

TELESCOPING TO ADULTHOOD

30 SENSORY ISSUES

31!

SENSORY ISSUES & RELATIONSHIPS

• !Dating?!

!• !Hygiene?!

! !• !Intimate Relationships?!32!

SENSORY ISSUES & EMPLOYMENT

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Matching Needs to Possible Employment Positions!

Personal Characteristics !Preferred Job Attributes !Possible Positions!

Deficit in verbal and Few communication Stock shelves nonverbal communication requirements

Challenges in socialization Limited contact with public, Filing, sorting, stapling more solitary job duties paper shredding, after-hours cleaning

Unusual response to Provider of preferred Hanging clothes, sensory stimulation sensory input, ability to avoid washing cars (for those

noxious sensory stimulation enjoying that type of tactile input

Difficulty with change Few changes,stable work Small business,family and transition environment,little staff business, assembly

turnover, same work task line all day

Adapted from Shore, S. & Rastelli, L. (2006). Understanding autism for dummies. New York: Wiley.!


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Matching Needs to Possible Employment Positions!

Adapted from Shore, S. & Rastelli, L. (2006). Understanding autism for dummies. New York: Wiley.!

Personal Characteristics !Preferred Job Attributes !Possible Positions!

Strong visual-motor skills Requires good visual-motor Small-parts assembly, skills manufacturing, printing

Behavior challenges Few antecedents to Situations where challenging behaviors, with behavior doesn’t cause situations where possible dangerous situations; problems don’t endanger avoid factories or jobs others using heavy machinery

Savant skills Responsibilities capitalizing Matching stock on these strengths numbers to packing lists, mathematically oriented positions for those with good math skills


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www.autismasperger.net

Ever have to ask a person who is providing directions when you are lost to “hold on a

minute while I get a pen and paper to write this down”? Recognizing your limitation in memorizing a long string of directions, you asked for and received the accommoda-tion of additional time and the use of a simple assistive device in the form of a pen and paper. Possibly without even realizing it, you have engaged in self-advocacy.

For most people, self-advocacy happens regularly. Anytime you ask for additional time, a change in the environment such as turning

the TV volume up or down, or even no onion on your hamburger, you are advocating for yourself. However, for people with sensory or other needs out of the ordinary, it can be helpful to have a structure or protocol for recognizing a new challenge, to formulate and imple-ment an effective advocacy plan, and then to provide the reason for the plan in the form of a disclosure.

This article examines how a three-step plan or protocol can be employed to engage in successful self-advocacy for those having sen-sory issues. This plan can also be generalized to those having other

needs for modifications to their environment or for greater under-standing.

Self-Advocacy in a RestaurantAs the waitress takes us to our ta-ble, I notice a recessed lighting unit shooting a beam of light like a laser above where my friend and I are about to sit. Before we are seated, I ask the waitress if my friend and I may move to the next table. Paral-lel vertical lines suddenly appear in her brow, indicating her confusion.

I say, “Those lights in the ceil-ing give me a headache – I’ve got sensitive eyes.”

FOCUS ON SELF-ADVOCACY

Effective Self-Advocacy for People with Sensory IssuesBy Stephen M. Shore, EdD

S.I. FOCUS MAGAZINE — SUMMER 201118

©iStockphoto.com

/MightyIsland

The lines in her forehead melt away as she pleasantly escorts us to the neighboring table.

I have just employed a three-step approach to successful self-advo-cacy for a sensory issue of mine – bright lights. Let’s unpack what I did.1. Scanning the environment:

Survey the environment for causes of sensory difficulties and discomfort.

Ideally, this is done prior to or upon entering an environ-ment. Experience tells me that sitting under recessed lighting is very uncomfortable, so I need to form an advocacy plan – fast.

2. Advocacy: Explain the situ-ation in a way that another person can understand and provide support.

This means talking in a calm and rational manner, neither yelling nor having a meltdown, which can happen when the cause of a sensory overload situation is not un-derstood. An additional, yet vital, component is to have alternative solutions to this problem. In this case, moving to another table was a suit-able choice. Other alternatives might include explaining why I would need to wear a baseball cap while eating, or perhaps choosing another restaurant.

3. Disclosure: Provide a reason that modification to the envi-ronment or greater understand-ing is needed.

Disclosures may be partial or full. A partial disclosure focuses only on the particular aspect of the sensory issue

causing the challenge. In this case I did a partial disclosure, because I mentioned only my visual sensitivity. In contrast, a full disclosure would have entailed mentioning my being on the autism spectrum. Often a full disclosure is not neces-sary or even advisable.

Success in the above example was predicated on both my understand-ing of my sensory needs as well as understanding and applying the “mechanics” of engaging the three-step process outlined above.

The chart below (Figure 1) can be helpful in planning self-advocacy efforts.

Self-Advocacy at SchoolEducating people about how their sensory issues affect them and

supporting them as they navigate the process of successful self-advo-cacy may be necessary. Fortunately, there is a tool and process already in place for educating students and youth in effective self-advocacy skills – their Individual Education Plan (IEP). The Individuals with Disabilities Education Act (IDEA) strongly recommends this inclusive process for all school-aged children and mandates it for students of transition age.

Involving students who are ver-bal and self-aware poses less of a challenge to educators than includ-ing students with more significant challenges. The key is to seek ways to involve each student as an equal partner – as appropriate to the student’s ability – with all the other team members. IEP meetings provide important opportunities


Figure 1

MY ADVOCACY PLAN

Name

SCAN ADVOCACY DISCLOSURESurvey environment and determine what is causing the difficulty.

Explain your needs in a way the other person can understand and provide support.

Indicate the reason:

specific aspect(s)

full diagnosis or condition

Sitting under recessed lighting above the table in the restaurant makes me feel as if I am looking into a spotlight.

Ask the waitress if we can move to a table that is not under recessed lighting.

indicating I have sensitive eyes and sitting under recessed lighting units give me a headache.

19 S.I. FOCUS MAGAZINE — SUMMER 2011

for students to hear the language of advocacy and participate in the everyday negotiations for obtaining appropriate accommodations for their sensory and other needs.

Three Examples of Students at Different Levels

The first is a young, preverbal, hyperactive child with significant challenges, who perhaps has never yet sat still in a chair for a full minute. Rather than expecting him to remain in the IEP meeting for its full length, perhaps this student could just stay long enough to greet a couple of team members he is most familiar with.

Even this brief a stay has two main benefits. IEP team members who are not familiar with the child get a reminder of who he is. For example, the psychologist in charge of assessing students with spe-

cial needs of an entire school or district gets a quick refresher

matching the child’s face to his as-sessment materials. The child also benefits as he begins to realize that he has input into regular meetings about his own educational plan.

The second example is a child with some communication skills who may be able to express verbal-ly, through an assistive communica-tion tool or sign language, some challenges faced in class. Perhaps writing or dictating a letter to an

IEP team is possible (Figure 2).Yet a third child may be able to

analyze what accommodations she needs and take the lead of some or all of the IEP meeting – under the watchful eye of the IEP team leader. Through involvement in their education plans, each one of these students gains valuable skills in self-advocacy that can be employed later in adult life, such as at work. (See Figure 3 for helpful resources.)


Figure 2

of student pencils during that time makes it very hard for me to concentrate.

Sammie

Adapted from Shore, S. (2004). “Using the IEP to Build Skills in Self-Advocacy and Disclosure.” In Ask and tell: Self-advocacy and disclosure for people on the autism spectrum, p. 80.

Figure 3

Helpful Resources for Familiarizing Students with Their Own IEP

1. Student-Led IEPs: A Guide for Student Involve-ment,(2001). An excellent tool for helping teachers and others supporting students with disabilities

Available from the Council for Exceptional Chil-dren www.cec.sped.org

2. Helping Students Develop Their IEPs: Technical Assistance Guide, -

3. A Student’s Guide to the IEP: Technical Assis-tance Guide,

4. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, edited by Shore (2004). A volume of six chapters – all written by persons on the autism spectrum – on how to edu-cate those with autism on effective self-advocacy skills.


Self-Advocacy in the WorkplaceA young man with autism, George is a proud recent high school graduate with honors for his high grades. As a sort of capstone to his success in school, George’s supervi-sor decides to reward him for his years of excellent performance by moving him out of the distraction of an open office into a private workspace.

“Congratulations!” his supervi-sor exclaims as he walks George to his new office space. “Now you will have the peace and quiet of your own office!”

How great it is to have my own office, away from that noisy open office where it was so hard to concentrate. I’ll have to write a thank you letter to my boss after I get home tonight, George thinks to himself.

A conscientious worker, George thanks his supervisor, flips on the lights, boots up his computer and gets to work right away analyz-ing the spreadsheet containing the company’s accounts. After a few minutes, a startled George suddenly sits bolt upright in his chair but does not realize why. By the morning break George has

been startled 10 times, has a head-ache and is feeling very jumpy – but soldiers on through. Departing at 5:00 p.m., George wonders why he didn’t complete his days’ work but attributes that to adjusting to his new workspace. Transitioning to new things was always a challenge for George in a school. So that must be it, he thinks to himself.

While having dinner at home on paper plates and using plastic silverware (noise from stoneware plates and metal utensils used to drive George into meltdowns as a child), George flashes back to when his 3rd grade teacher used to slam shut a sticky window in his class-room, causing him to scream due to his overactive startle response and hypersensitive hearing. The memory continues to the IEP meet-ing where George’s teacher asked him why he kept screaming in class.

George’s teacher did not believe George’s

explanation that the slamming window hurt his ears and made him cry but was willing to have someone

from building maintenance sand down and put soap on part of the window so that it closed easily and quietly. George’s teacher was (hap-pily) flabbergasted that George no longer screamed in class.

Yanking himself back to the present, George suddenly realizes that the door of the office across the hall from his has to be slammed shut to lock properly. Excited at this realization, George arrives at work early to inspect the door, finding that part of it needs to be shaved down to fit well into the doorjamb – just like that window in 3rd grade. Remembering what was done to the window, George is ready to create his advocacy plan.

Unlike most people who may be initially surprised by the slamming door and can habituate to this situ-ation, George’s hyper-alert sensory system does not allow for that luxury. As a result, he is startled anew dozens of times a day – to his eventual exhaustion. Unlike the res-taurant example, where it was pos-sible to anticipate the sensory issue, George must be in the situation to recognize the need for ef-fective self-advocacy.

Employing the


21 S.I. FOCUS MAGAZINE — SUMMER 2011

three-step plan of scanning the environment, advocating in a way his supervisor can understand, and finally disclosing why he needs this accommodation will enable George to be much calmer in his office and to continue working successfully.

Using the Advocacy Plan Work-sheet, George’s plan could look like this (Figure 4).

George’s experience during his IEP team meeting, when he told his teacher that closing a sticky win-dow caused him to scream, allows him to generalize this situation to the work environment.

When Self-Advocacy is AppropriateAt certain times, a question arises as to whether self-advocacy is

necessary. Self-advocacy becomes an option when the effect of hav-ing a sensory issue significantly impacts a situation or a relation-ship and there is a need for bet-ter mutual understanding. With self-advocacy comes a measure of disclosure of why the need for accommodation or greater under-standing is needed.

For example, when teaching a course in statistical analysis, there is usually no reason for me to advocate for any special needs or disclose that I am on the autism spectrum. However, sometimes I may mention that I am very bad at remembering faces and that it would be helpful if students re-in-troduce themselves when outside of class. In this case I have advocated

for a need and provided the reason as a partial disclosure based on how my being on the autism spectrum relates to this class.

On the other hand, when teach-ing courses in autism and special education, it makes more sense to provide a complete disclosure, since my having autism does significantly affect my relationship with my students.

SummaryWe’ve looked at a couple of ex-amples of how using a three-step process can be helpful in develop-ing a successful self-advocacy plan for people with sensory issues and other conditions. Also, involving students in their own IEPs as ap-propriate to their abilities can be a powerful way to teach self-advoca-cy. Additionally, it is important to understand when self-advocacy is appropriate. Finally, knowing how to create and implement a success-ful self-advocacy plan is just one key to unlocking the door towards leading a more comfortable, pro-ductive and meaningful life.


Figure 4

MY ADVOCACY PLAN

Name

SCAN ADVOCACY DISCLOSURE

Survey environment and determine what is causing the difficulty.

Explain your needs in a way the other person can understand and provide support.

Indicate the reason:

specific aspect(s)

diagnosis or condition

Slamming of sticky

office is causing an excessive startle response.

Ask supervisor if something can be done about this difficult-to-close door. Suggest sanding down the part sticking against the

indicating I am easily startled by unexpected noises.

George


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