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AUTISM SELF ADVOCATES: “OUT OF THE BOX”

AUTISM SELF ADVOCATES: “OUT OF THE BOX”. Panel Discussion Autistic Advocates “Out of the Box”. Valerie Paradiz, PhD NASDDDS Mid-Year Meeting Nashville, TN May 8, 2008 www.ValerieParadiz.com. Personal Background. Grassroots Advocacy Mousey Professor Writing as Social Scripting

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AUTISM SELF ADVOCATES: “OUT OF THE BOX”

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  1. AUTISM SELF ADVOCATES: “OUT OF THE BOX”

  2. Panel DiscussionAutistic Advocates “Out of the Box” Valerie Paradiz, PhD NASDDDS Mid-Year Meeting Nashville, TN May 8, 2008 www.ValerieParadiz.com

  3. Personal Background • Grassroots Advocacy • Mousey Professor • Writing as Social Scripting • Elijah’s Cup • The ASPIE School • Consulting & Infrastructure

  4. Employment & Disclosure

  5. At almost 40 years old, I am just now developing sustainable employment options that truly utilize my strengths and talents. It didn’t have to take so long! I went to dozens of VR agencies – state and private – and was turned away because how on earth could I need a job coach if I have a master’s degree? Zosia Zaks

  6. One of the things for my own being is that the MRDD where I to live shares because was not properly dx before age of 22 they cannot serve me and so for me would like “AGE” as a factor for qualifying for services removed but the “NEED” should promote the services of what is needed for that individual regardless of the age.Sondra Williams

  7. It feels raw to acknowledge that which we work so hard to hide, but only by turning ourselves inside out will they start to understand. We are damned if we do and damned if we don't. The more 'successful' we appear, the less support we can obtain even if we are desperate for it. Someday people will learn to value our strengths over what we hide (or cannot). And when that day comes, and we don't have to hide anymore, we can spend that energy achieving. Dena Gassner

  8. Integrated Self Advocacy (ISA)™ • Informs Individuals with ASDs • Values the Autistic Perspective • Teaches Us How to Support the Emerging Advocate • Sensory & Social Awareness • Navigating Disclosure & Employment • Developing Deep and Focused Interests

  9. The Future is Outside the Box

  10. Long Term Plans for People on the Autism Spectrum: Challenges, Opportunities, and Cost Considerations Lars Perner, Ph.D.Assistant Professor of Clinical MarketingDepartment of Marketing, Marshall School of BusinessUniversity of Southern CaliforniaLos Angeles, CA 90089-0443Phone: (213) 740-7127     Cell:  (760) 412-0154perner@marshall.usc.edu   /

  11. Personal Background • The opportunities I have had have helped me “land” in a profession that matches my interests and abilities • Privileged background • Strong family support • Support programs can help others who have not had the same opportunities

  12. Opportunities for People on the Autism Spectrum • Filling unique niches • ”The world only needs a few people who _____.” • The supply of people with these skills may, however, also be limited • Taking advantage of • Special interests • Motivation • Skills • Knowledge • Special talents and abilities

  13. Cost Considerations • Not providing needed support and services may have much higher long term costs than providing these up front • Harvard School of Public Health (May 2006) study: Life span costs of treating a person with autism spectrum conditions (ASC) run as much as $3.5 million (and the size of this population may be increasing) • Some possible costs • Social services • Medical/hospitalization • Criminal justice • Early intervention and treatment may reduce costs by 2/3 • Unique contributions of individuals on the autism spectrum may be missed

  14. Imperatives • Recognizing each individual as unique • “Cookie cutter” solutions will not work for everyone • Matching individual interests and talents with opportunities • Development of methods to identify individual potential • E.g., vocational aptitude tests adapted for people on the autism spectrum • Vicariously learning of what has taken others a long time of trial and error to learn—identification of suitable “models” • Transition planning—initiated early on • Developing unique compensating skills to mitigate challenges

  15. For More Info… http://www.LarsPerner.com (Personal Site) http://www.AspergersSyndrome.org (Autism and Asperger’s Syndrome Information) http://www.ConsumerPsychologist.com (Marketing and Consumer Psychology) http://www.ProfessorsAdvice.com (College Preparation and Survival for People on the Autism Spectrum)

  16. Dena Gassner, MSW

  17. Shame Train When does shaming begin? Where is it reinforced? How does it escalate? What are the consequences?

  18. Invisibility Model; Seeking Normal • Normal is an unachievable goaL • This thinking is creating broken people • Under employment, remediation without new strategies is totally ineffective and cannot lead to success

  19. Haunted by Bias • Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know where to hide the bodies of anyone who ever said, “You’re perfectly healthy; it’s all in your head”.

  20. Misdiagnosed with WHAT? Externalized Expressions: • ADHD/ • Oppositional Defiant Disorder/Conduct Disorder • Bi-polar Disorder • Personality Disorder • OCD/Eating Disorders • Social Anxiety Disorder

  21. Misdiagnosed with WHAT? Internalized Expressions: • Mental Retardation • Clinical Depression • Eating Disorders • Cutting • Anxiety or Panic Disorder • Phobias • Perfectionism • Separation Anxiety • PTSD/suicidal issues

  22. Co-existing issues • 32% of all children with severe autism use prescription psychotropic medications as compared to 87% of those who are “high functioning”. (Myles/Andreon) • Most adults with “HFA” are often not identified at all, or are not considered “disabled” until they develop mental illness.

  23. PTSD: Schraldi • Abuse of a sexual nature... physical abuse (beating... battering, choking, ...forcing to eat/drink, threatening with weapon); emotional; isolation, threats to leave, intimidation, degrading names, minimizing or denying abuse, taking away power/control, neglect, assault, battery, witnessing abuse, witnessing parents’ fear reactions”

  24. Gender Bias • Anecdotally, 4-1 is inaccurate; 2-1 is more likely • Women present differently • Historical connection to medical failures with women • Prominence of abuse and naiveté

  25. Why am I here? • 8000 Hate Crimes occur in the United States each year • 5 millioncrimes occur each year toward persons with physical or cognitive challenges

  26. Why am I here? • 80 %of all women with cognitive challenges experience at least one sexual assault in their lifetime • 49%experience 10 or more incidents of sexual abuse in their lifetime

  27. “2/3ds of the 41 school shooters involved in attacks since 1974 …felt bullied and persecuted. • …attackers described being bullied in terms that suggest that these experiences approached torment” • Heinrich; 2003

  28. One possible outcome of isolation • By now, it’s over. If you are reading this, my mission is complete… You who have ridiculed me, who have chosen not to accept me, who have treated me like I am not worth their time are dead. They are F..ING DEAD… • Surely you will try to blame it on the clothes I wear, the music I listen to, or the way I choose to present myself, but no. Do not hide behind my choices. You need to face the fact that this comes as a result of YOUR CHOICES. Parents and teachers, you f..ed up. You have taught these kids not to accept what is different. YOU ARE IN THE WRONG. I have taken their lives and my own- but it was your doing. Teachers, parents • LET THIS MASSACRE BE ON YOUR SHOULDERS UNTIL THE DAY YOU DIE.” • Eric Harris; reprinted in • School Violence compiled by Bryan Grapes

  29. Truths • Look to outcomes to ascertain the level of need. • Don’t look ‘inside yourself’ since pity or the lack thereof is a reflection of you, not us. * • Be patient with people who communicate with clarity, honesty and rawness that may disgust, offend or create disease in you. Look to the truth beneath. • Know that no one standing here would be perceived as “successful” under neurotypical standards. We don’t “have it all” • No that there is no such thing as “high functioning”; only less pitiable.

  30. Failure to invest a small amount into this population is absurd. In home support for personal organization and childcare Supported employment w/ self-employment models Streamlined and specially designed accommodation are needed just to access services Adequate but specialized supports for academics and life skills are critical for post-secondary options Wrap around support like above, financial aid, lighter schedules will increase employment outcomes Workplace and school coaching to support disclosure and tolerance Meaningful access to the community for social and recreational inclusion The Truths

  31. Here’s how it’s NOT working for us • Limited validation • No adaptations • Autism as something separate from self • Unable to name it • Unable to own it • Unable to integrate Unable to ask for support in a meaningful way • Unable to create appropriate boundaries

  32. “How’s That Working for Ya?” • Underemployment • Insufficient supports for community living • Poverty level existences • Missing intelligence in the workforce • Pulling from Peter to pay Paul

  33. Resource Shifting • Rehab * Homeless * Domestic Abuse • Work-place Abuse * Social Security • Community Mental Health * Prison • State Medicaid * Medicare

  34. We are worthy • Basic Human Rights • We don’t want pity, we want action • Without stigma and ensuing societal shaming through deficit rather than strength based models, we can and do achieve • We are dedicated and consistent employees when appropriately supported • We can and are tax paying citizens • We are disabled and cannot do this alone • High functioning is an illusion • It is not a mystery for us, or adequately trained personnel

  35. THANK YOU! • http://www.ValerieParadiz.com • perner@marshall.usc.edu http://www.LarsPerner.comhttp://www.AspergersSyndrome.orghttp://www.ConsumerPsychologist.comhttp://www.ProfessorsAdvice.com • dgassner@fuse.net

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