Shore Stephen

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AUTISM AND SEXUALITY Exploding Myths, Uncovering Facts, and Helping People with Autism Autism One Conference Chicago, IL Presented by Stephen M. Shore www.AutismAsperger.net

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Introduction

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WHO AM I? Introduction – The Past The Autism Bomb

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W H A T I S A U T I S M ? A complex developmental disability that typically appears during the first three years of life. Autism Spectrum Disorder results from a neurological condition that affects the functioning of the brain. Social interaction Communication (but no significant clinical delay for AS) Repetitive motions and restricted interests Anything that interferes with the central nervous system getting the needed information from the environment. ASA (2005) DSM IV-TR (2000) Miller (2000) Reframe • Communication • Socialization • Restricted Interests

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

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Bumps into people in line… Difficulty with hair washing and brushing… Overly sensitive to loud noises… Adapted from Myles, Cook, Miller, Rinner & Robbins. (2000). Asperger Syndrome and sensory issues : Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing. P. 5. Problems with handwriting… Picky eater… Always “on the go”… Only likes certain types of clothing… CHARACTERISTICS OF CHILDREN WITH AUTISM SPECTRUM CONDITIONS Difficulty paying attention… Clumsy…

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

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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 13 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 Interests, Relationships & Community

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S P E C I A L I N T E R E S T S An interest of such great intensity that it interferes with daily functioning1. 1. Attwood, A. (1998). Aspergers Syndrome. London: Jessica Kingsley Publishers. 2. Shore, S. (2001). Beyond the wall: Personal experiences with autism and Asperger Syndrome. Shawnee Mission, KS: Autism Asperger Publishing Company. S O M E S P E C I A L I N T E R E S T S2 airplanes astronomy bicycles earthquakes medicine chemistry mechanics electricity electronics computers hardware tools psychology music rocks geology geography locks cats dinosaurs watches shiatsu yoga autism

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Disclosure

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S U C C E S S W I T H A U T I S M Self-Determination —> Disclosure —> Self-Advocacy 1. Make the child aware of their strengths and challenges through verbal, pictorial, and other communication. 2. “Rack up” strengths and challenges. 3. Non-judgementally compare characteristic with other role models. 4. Present the label summarizing a condition rather then a name for a set of deficits. 5. Making ones needs known in a way that others can understand and comply; hopefully in a proactive manner.

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THE HIDDEN CURRICULUM Practical Solutions for Understanding Unstated Rules in Social Situations Brenda Myles Melissa Trautman Ronda Schelvan Autism Asperger Publishing Company

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H O L D T H E D O O R P L E A S E ? Laura Jekel, 12/2000

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THE HIDDEN CURRICULUM - COMMUNITY Bob Sam Sam arrives after Bob. What two rules did he break? Peter Gerhardt (personal communication, April 2004) http://www.esoterically.net/log/archives/2003_01.html

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Relationships

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TYPES OF RELATIONSHIPS

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R E L A T I O N S H I P S (Cont.) Listening is the most important skill for friendship and romance. Good hygiene is probably the second most important skill. Close friends talk with each other about life experiences. Close friends can “agree to disagree.” The most important part of “boyfriend” or “girlfriend” is “friend.” Showing interest in another person is a terrific way to flirt. Being “revved up” can get in the way of friendship and romance. Friendship, Romance, and all that “Other Stuff” - Teresa Bolick, Ph. D. Before you talk about sex you need to talk about closeness

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R E L A T I O N S H I P S (Cont.) Never touch a friend unless he or she says it’s all right. If you feel uncomfortable about someone’s actions (or your own), tell a trusted adult. LAST BUT NOT LEAST, “Stop” means “Stop” and “No” means “No.” Friendship, Romance, and all that “Other Stuff” - Teresa Bolick, Ph. D. Those with autism are people too… Perhaps just more so.

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R E L A T I O N S H I P S (Cont.) How? Sex is a normal yet a very private act and is clean. • Discuss in a developmentally appropriate manner - Find the balance between not too much and not too little • Make sure you understand the question(s) being asked • Explain in a matter of fact manner Talking About Sex - Jerry Newport

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A CLOSER LOOK AT MY PLACEMENT ON THE AUTISM SPECTRUM — 19 + College More friends Dating Others really do think differently Utopia! Paradigm shift from being advocated for to advocating for one’s self

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Self-Advocacy

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S E L F - A D V O C A C Y D E F I N E D Self-advocacy involves knowing when and how to approach others in order to negotiate desired goals, and in order to build better mutual understanding, fulfillment, and productivity. Successful self-advocacy often involves an amount of disclosure about oneself that carries some degree of risk, in order to reach a subsequent goal of better mutual understanding.

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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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Self-Initiated Individual Education Plan (Cont.) Who must we get on board? • Student - Student’s Guide to the IEP - Helping Students Develop Their IEP www.nichcy.org • Parents • Special Education Teacher • Regular Education Teacher(s) • Administrators • Others

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S U C C E S S W I T H A U T I S M Six Stages to Self-Advocacy 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. Adapted from Sibley, K. “Help me help myself.” in Stephen Shore (ed.). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 80.

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S U C C E S S W I T H A U T I S M Self-Initiated Individual Education Plan Shore, S. “The IEP for developing skills in self-advocacy and disclosure.” in Stephen Shore (ed.). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 35. To my IEP Team, I like the way Mr. Dowd teaches math. He makes it fun and easy for me. Mrs. Sugarmans’ English class is very difficult. I don’t understand when she diagrams sentences on the board and the scratching of the student pencils during writing time makes it very hard for me to concentrate. Truly yours, Joey

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S U C C E S S W I T H A U T I S M Six Stages to Self-Advocacy Adapted from Sibley, K. “Help me help myself.” in Stephen Shore (ed.). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 80. 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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Self-Initiated Individual Education Plan (Cont.) 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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Self-Initiated Individual Education Plan (Cont.) Adapted from Shore (Ed). (2004). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company. P. 92. Recreation and Leisure Home/Independent Living Community Involvement/Volunteer Work Postsecondary Education/Training

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Education in Adulthood

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M A J O R K E Y——>S U P P O R T Family Friends School Other M a k i n g C o l l e g e R i g h t Interconnection is Vital

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SOME STEPS FOR A SUCCESSFUL COLLEGE EXPERIENCE

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M a k i n g C o l l e g e R i g h t (Cont.) REALITY CHECK (Lorraine Wolf) Colleges are in the business of education College are not rehabilitative institutions

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L O O K I N G T O T H E F U T U R E Self-Determination —> Disclosure —> Self-Advocacy 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. Poor executive function. Regularly meet with professor (perhaps once a week) to keep on target with lengthy assignments.