I am a person with autism

Transcription

1 Celebrating the Culture of Autism: Role Models, Real Lives & Relationships By Valerie Paradiz, PhD I am a person with autism Diagnosis at 40 Depression Parent of Elijah Diagnosis at age 3 1

2 Let s back up Elijah as a child Intensive support needs Seizure disorder Sensory challenges Early intervention Shared stims & special interests Family values and culture of autism 2

3 The path to community Unwitting Aspie Personal transition Autism Network International AUTASTICS GRASP NYU Hospital Autism Society meetings Role models 3

4 Elijah s Cup Name that Autie And name that deep interest too! 4

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14 Whose Culture? Andy Kaufmann American Comedian 14

15 Andy Warhol American Visual Artist Albert Einstein German Physicist 15

16 Alexander Graham Bell American Inventor Emily Dickinson American Poet 16

17 Vincent van Gogh Dutch Painter Franz Kafka Czech Writer 17

18 Henry David Thoreau American Philosopher Howard Hughes American Inventor/Engineer 18

19 Glenn Gould Canadian Pianist Jane Austen English Novelist 19

20 Thomas Jefferson American Statesman Ludwig Wittgenstein Austrian Philosopher 20

21 Dan Aykroyd American Comedian H.P. Lovecraft American Sci fi Writer 21

22 Isaac Asimov American Sci fi Writer Isaac Newton English Scientist/Philospher 22

23 Yayoi Kusama Japanese Visual Artist Recognizing Our Shared Cultural Values While all of you were at the cocktail party, we were busy inventing the wheel. Temple Grandin 23

24 The Crux of the Matter Relationships are impacted by our Social communication differences Sensory differences Deep interests The path to community Professional transition ASPIE School NYU Asperger Institute ISA Programs Autistic Global Initiative Autism Speaks Simons Foundation: Spectrum News Capacity building globally 24

25 Self Advocacy and Relationships Self Advocacy Employment Quality of Life Education 25

26 Self Advocacy Self Determination Quality of Life What is Self Advocacy? 26

27 3 Steps of Self Advocacy 1. Self awareness 2. Advocacy plan + disclosure 3. Implementation 27

28 3 Self Advocacy Steps 1. Self Awareness 2. Advocacy plan + disclosure 3. Implementation 3 Indicators of Self Advocacy 1. Self Awareness 2. Competence 3. Autonomy adapted from Ryan and Deci 28

29 1. Self Awareness Knowing that one needs to advocate for something and what it is 2. Competence Having tools to advocate for oneself, such as a script or a sensory support (sunglasses, earplugs) and knowing how to use them 29

30 3. Autonomy Initiating advocacy on one s own behalf, independent of prompts or cues 5 Arenas of Self Advocacy 1. Sensory & environmental 2. Social 3. Disclosure 4. Strengths & interests 5. Civil rights & entitlements 30

31 Effective and ineffective self advocacy 1. Advocating for Sensory Needs Becoming aware of one s own selfregulation and sources of comfort Understanding how to advocate for environmental accommodations Advocating for environmental accommodations in novel situations or settings 31

32 2. Advocating for Social Needs Becoming aware of one's social tendencies, including propensity for withdrawal, overload, shutdown Communicating social preferences and needs Advocating for social accommodations in novel situations or settings 3. Understanding Disclosure Educating others about one's way of being or condition (cross cultural communication) Assessing situations to determine how to disclose (full or partial) Disclosure, particularly as safety or self care 32

33 4. Advocating with Strengths & Interests Identifying one's own strengths and focused interests Using strengths and interests to support one's community, employment, social or learning experiences Strengths and interests as a foundation for relationships 5. Understanding Civil Rights & Entitlements Knowing rights under IDEA, ADA or other relevant legislation Participation in the IEP or adult services meeting Understanding when to assert one's legal or civil rights 33

34 The ISA Curriculum Building Relationships ISA Indicators & Skills Assessment 34

35 Assessment Uses of the ISA Assessment To gather baseline data on self advocacy ability To target IEP, ISP, treatment or other program goals for an individual To measure progress on self advocacy goals To measure outcomes (after completion of the ISA curriculum, a program, etc.) 35

36 Implementing the Assessment 15 survey questions 3 indicators x 5 skill areas = 15 Data collection Self report 1 3 adaptability scale Adaptability Scale 1 3 scale 3 = No Answer (not adaptive) 2 = Answered, but not in context to questions (adaptive) 1 = Answered in context to question (highly adaptive) 36

37 Using the ISA Indicators & Skills Assessment Survey Identifying ISP Goals & Benchmarks Self Awareness Scale 37

38 Competence Scale Autonomy Scale 38

39 ISA Sensory Scan Autism & Sensory Processing Zone of behavioral disorganization Zone of behavioral organization Person with autism Person without autism 78 39

40 ISA Sensory Scan Worksheet Advocacy Scripts 40

41 Advocacy Script Worksheet There exists a direct relationship between sensory needs and the ability to participate in social relationships. 41

42 ISA Social Scan ISA Social Scan Worksheet 42

43 Disclosure Disclosure as a form of cross cultural communication Disclosing something intimate about oneself increases understanding and empathy The information that is shared is tailored depending upon to whom one is disclosing and the level of disclosure Effective Communication Communicate in a way that permits others to hear and to listen Invites others to interact Sets a foundation of understanding 43

44 The ISA Sensory Scan When sensory challenges impede the building of relationships Removing sensory barriers to participation allows active engagement with the social world Sensory experiences can affect understanding of the environment or of the actions of others The ISA Social Scan Social differences act as obstacles to participation in daily life Understanding one s own social differences helps to produce change Social self advocacy educates others as to one s social needs and preferences 44

45 Self Awareness and Effective Communication Keys to Improved Relationships 45