AUTISM SELF ADVOCATES:

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AUTISM SELF ADVOCATES OUT OF THE BOX
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Panel DiscussionAutistic Advocates Out of the
Box

• Valerie Paradiz, PhD
• NASDDDS Mid-Year Meeting
• Nashville, TN May 8, 2008
• www.ValerieParadiz.com

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Personal Background

• Grassroots Advocacy
• Mousey Professor
• Writing as Social Scripting
• Elijahs Cup
• The ASPIE School
• Consulting Infrastructure

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Employment Disclosure
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At almost 40 years old, I am just now developing
sustainable employment options that truly utilize
my strengths and talents. It didnt 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
masters degree? Zosia Zaks
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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
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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
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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

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The Future is Outside the Box
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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 [phone]     Cell  (760)
  412-0154perner_at_marshall.usc.edu   /

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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

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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

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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

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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
  learnidentification of suitable models
• Transition planninginitiated early on
• Developing unique compensating skills to mitigate
  challenges

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For More Info

• http//www.LarsPerner.com (Personal Site)
• http//www.AspergersSyndrome.org (Autism and
  Aspergers Syndrome Information)
• http//www.ConsumerPsychologist.com (Marketing
  and Consumer Psychology)
• http//www.ProfessorsAdvice.com (College
  Preparation and Survival for People on the Autism
  Spectrum)

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Dena Gassner, MSW
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Shame Train

• When does shaming begin?
• Where is it reinforced?
• How does it escalate?
• What are the consequences?

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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

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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, Youre perfectly
  healthy its all in your head.

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Misdiagnosed with WHAT?

• Externalized
• Expressions
• ADHD/
• Oppositional Defiant Disorder/Conduct Disorder
• Bi-polar Disorder
• Personality Disorder
• OCD/Eating Disorders
• Social Anxiety Disorder

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Misdiagnosed with WHAT?

• Internalized
• Expressions
• Mental Retardation
• Clinical Depression
• Eating Disorders
• Cutting
• Anxiety or Panic Disorder
• Phobias
• Perfectionism
• Separation Anxiety
• PTSD/suicidal issues

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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.

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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

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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

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Why am I here?

• 8000 Hate Crimes occur in the United States each
  year
• 5 million crimes occur each year toward persons
  with physical or cognitive challenges

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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

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• 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

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One possible outcome of isolation

• By now, its 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

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Truths

• Look to outcomes to ascertain the level of need.
• Dont 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
  dont have it all
• No that there is no such thing as high
  functioning only less pitiable.

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The Truths

• 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

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Heres how its 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

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Hows That Working for Ya?

• Underemployment
• Insufficient supports for community living
• Poverty level existences
• Missing intelligence in the workforce
• Pulling from Peter to pay Paul

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Resource Shifting

• Rehab Homeless Domestic Abuse
• Work-place Abuse Social Security
• Community Mental Health Prison
• State Medicaid Medicare

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We are worthy

• Basic Human Rights
• We dont 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

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THANK YOU!

• http//www.ValerieParadiz.com
• perner_at_marshall.usc.edu  http//www.LarsPerner.co
  m http//www.AspergersSyndrome.org
  http//www.ConsumerPsychologist.com
  http//www.ProfessorsAdvice.com
• dgassner_at_fuse.net