Old Ways of Looking at Autism vs. New Ways . . . The New Look at the Needs of Teens and Adults on the Autism Spectrum
Presented by Michael John Carley
Founder, GRASP; School Consultant; Consultant for Disability Inclusive Culture, New York University Author: “Asperger’s From the Inside-Out,” “Unemployed on the Autism Spectrum,” “The Book of Happy, Positive and Confident Sex for Adults on the Autism Spectrum…and Beyond!” & the former Huffington Post column, “Autism Without Fear” PDFs???
Email me at [email protected]
Contact me through www.michaeljohncarley.com
Or Twitter @mjcarley Setup—”The Situation on the Ground”
Brief History of Autism + Myths
Potentially Redundant Charts
Side Issues: Socialization, Families, Schools, Sports, Romance, Sex, Travel, Work,
Closing (Perspective)
Q & A The Situation on the Ground
• The complexity of the Spectrum + DSM-5 The Situation on the Ground
• The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available The Situation on the Ground
• The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians The Situation on the Ground
• The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 54? The Situation on the Ground
• The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 54? • What’s out there for adults? The Situation on the Ground
• The complexity of the Spectrum + DSM-5 • Nowhere near adequate school placements available • A plethora of butcherous clinicians • 1 in 54? • What’s out there for adults? • We have “Problems”
Albert Einstein, Isaac Newton, Henry Cavendish, Thomas Jefferson, Vincent van Gogh, Ludwig van Beethoven, Wolfgang Amadeus Mozart, Emily Dickinson, Ludwig Wittgenstein, Alan Turing, Hans Christian Anderson, Herman Melville, William Butler Yeats, Lewis Carroll, Arthur Conan Doyle, Erik Satie, Bela Bartok, George Orwell, Patricia Highsmith, Andy Warhol, Glenn Gould, Alfred Kinsey, Bertrand Russell, Immanuel Kant, Piet Mondrian, Wassily Kandinsky, Barbara McClintock, Paul Erdös, Nikola Tesla, Sophie Germain, Dian Fossey, Andy Kaufman, Julia Bowman Robinson, Joseph Cornell, Benedict de Spinoza . . . Pr o-Cur e Resear ch Other Peer-Run Or ganizations Gr oups and Blogs
(Very) Pr o-Cur e Vaccine Theory Or ganizations
Regional Par ents’ Or ganizations
Spectrum-Friendly National Resear ch Par ents Or ganizations Or ganizations
Figurative Fights (“The Politics”)
• Language (ex: “Cure,”) Figurative Fights (“The Politics”)
• Language (ex: “Cure,”) • The Vaccine Debate Figurative Fights (“The Politics”)
• Language (ex: “Cure,”) • The Vaccine Debate • Aversives Figurative Fights (“The Politics”)
• Language (ex: “Cure,”) • The Vaccine Debate • Aversives • Research? What kind of research? Figurative Fights (“The Politics”)
• Language (ex: “Cure,”) • The Vaccine Debate • Aversives • Research? What kind of research? • First-ever Congressional Hearings on Autism A Brief History of Autism (or of a stigma) Dr. Leo Kanner—Autism 1943
• Inability to communicate verbally Dr. Leo Kanner—Autism 1943
• Inability to communicate verbally • Preference of objects to people Dr. Leo Kanner—Autism 1943
• Inability to communicate verbally • Preference of objects to people • Disliking of breaks in routine Dr. Leo Kanner—Autism 1943
• Inability to communicate verbally • Preference of objects to people • Disliking of breaks in routine • High intelligence Dr. Hans Asperger— Asperger Syndrome, 1944
• Inability to pick up non-verbal communication Dr. Hans Asperger— Asperger Syndrome, 1944
• Inability to pick up non-verbal communication • Passionate interests Dr. Hans Asperger— Asperger Syndrome, 1944
• Inability to pick up non-verbal communication • Passionate interests • Motor skills deficits Dr. Hans Asperger— Asperger Syndrome, 1944
• Inability to pick up non-verbal communication • Passionate interests • Motor skills deficits • Oddly exhibited use of the spoken word Before the 40’s? Kanner’s work spreads Asperger’s work does not Kanner’s work spreads Asperger’s work does not
Asperger not translated into English until the early 1980’s by Lorna Wing 1960’s-early 1970’s Bruno Bettelheim The Iconography of Autism: Bettelheimian Version
• Suggestion of bad mothering The Iconography of Autism: Bettelheimian Version
• Suggestion of bad mothering • Highly encouraged separation The Iconography of Autism: Bettelheimian Version
• Suggestion of bad mothering • Highly encouraged separation • Logical then to avoid the diagnosis of Autism Late 1970’s and 1980’s “Why do you want to put a label on him?” Anti-Labelism The Iconography of Autism: Anti-Labelist Version
• Intentionally vague description of all diagnoses as “special” The Iconography of Autism: Anti-Labelist Version
• Intentionally vague description of all diagnoses as “special” • By keeping the aura surrounding the individual undefined, no one could prescribe anything harmful to the family The Iconography of Autism: Anti-Labelist Version
• Intentionally vague description of all diagnoses as “special” • By keeping the aura surrounding the individual undefined, no one could prescribe anything harmful to the family • Avoidance of stigma? So did these two eras really contradict each other as much the anti-labelists hoped? • Both prevented individuals from having a say in their care— Denying self-advocacy, if not the concept altogether
• Demonization of diagnosis itself
• Both attached negative iconography to words like “autism” and “Asperger’s” The seeds of where we are today began in the 1960’s
• First autobiographical accounts — Donna Williams, Temple Grandin, and Thomas McKean challenged the idea that all autistics were incapable of communication The seeds of where we are today began in the 1960’s
• Clinicians Like Sacks who brought the world’s attention to the beautiful works by autistics The 1990’s
• 1993-Don’t Mourn for Us The 1990’s
• 1993-Don’t Mourn for Us
• 1994-The DSM-IV The 1990’s
• 1993-Don’t Mourn for Us
• 1994-The DSM-IV
• Late 1990’s-More books by people like Liane Holliday-Willey, Jerry Newport, Stephen Shore. Plus, 2nd and 3rd books The 1990’s
• 1993-Don’t Mourn for Us
• 1994-The DSM-IV
• Late 1990’s-More books by people like Liane Holliday-Willey, Jerry Newport, Stephen Shore. Plus, 2nd and 3rd books
• Opinions, not just experiences And they dispelled the notion that one size fit all Myths Since Dispelled
• Passionless Myths Since Dispelled
• Passionless • Humorless Myths Since Dispelled
• Passionless • Humorless • No sexual appetite Myths Since Dispelled
• Passionless • Humorless • No sexual appetite • We’re all great at math Myths Since Dispelled
• Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life Myths Since Dispelled
• Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life • Happiness = ability to communicate Myths Since Dispelled
• Passionless • Humorless • No sexual appetite • We’re all great at math • Bullies are eventually punished by life • Happiness = ability to communicate • 65%-85% boys? For real? Setup: Boys and Girls
• Eye Contact Setup: Boys and Girls
• Eye Contact • Interest in Sports Setup: Boys and Girls
• Eye Contact • Interest in Sports • Submissive Relationships as Adults “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Intense absorption in a topic or field of interest. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Intense Individual is absorption in a obsessed, and is driven further into topic or field of this absorption by interest. anxiety and stress. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Intense Individual is obsessed, and is absorption in a Individual is driven further into passionate. topic or field of this absorption by interest. anxiety and stress. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Professorial, mono-toned manner of speaking. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Professorial, Stilted awkwardness mono-toned that is off-putting to manner of others, often preventing further speaking. steps in a potential relationship. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int. Focused on Professorial, Stilted awkwardness being clear in mono-toned that is off-putting to what is being manner of others, often preventing further said by utilizing a speaking. steps in a potential strength, text. relationship. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Discomfort or inability at small talk. Sees no logic in it. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Discomfort or inability at Off-putting and small talk. Sees impolite. no logic in it. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Discomfort or inability at Off-putting and Gets to the small talk. Sees impolite. point. For many, no logic in it. this is very refreshing. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Problems with imagination— may have played out most noticeably when the individual was a child, as a difficulty with “imaginative play” “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Problems with imagination— Varying degrees of may have played out inability towards most noticeably when the individual was a imagination and child, as a difficulty creative or flexible with “imaginative thinking. play” “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Problems with imagination— Varying degrees of May be may have played out inability towards most noticeably when indications of a imagination and the individual was a great, technical child, as a difficulty creative or flexible with “imaginative thinking. mind. play” “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Problems with non-artistic activities or fields of study “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int. Can be seen as Problems with “goofing off” or non-artistic not focused activities or enough on fields of study serious matters. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int. Can be seen as Problems with May be “goofing off” or non-artistic indications of a not focused activities or great, creative enough on fields of study mind. serious matters. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Says whatever comes into their head, unaware of the potential damage the statement might cause. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Says whatever comes into their head, unaware of The individual is the potential rude. damage the statement might cause. “The New Look”
Critical Instructional/ Characteristic Interpretation Positive Int.
Says whatever comes into their head, unaware of The individual is The individual is the potential rude. honest. damage the statement might cause. Socialization:
Do We Really Want To? Socialization:
Different Learning Styles
Visual Learner? Non-Visual Learner? Socialization:
Different Learning Styles
All autism? Special Ed? Inclusion? Mainstream? Socialization:
Common Connections Families
• Master’s Degrees in Neuroscience Families
• Master’s Degrees in Neuroscience • Stigma of the aforementioned history Families
• Master’s Degrees in Neuroscience • Stigma of the aforementioned history • They don’t get a break from one another — Accumulated frustrations Families
• Master’s Degrees in Neuroscience • Stigma of the aforementioned history • They don’t get a break from one another — Accumulated frustrations • Genetic nature Parents should…
• Plan 15 years ahead, not 5 Parents should…
•Plan 15 years ahead, not 5 •“Adapt or die” Parents should…
•Plan 15 years ahead, not 5 •“Adapt or die” •Work it with your head, not your heart (Bedouin example) Independent Living Snapshots
• Only 1 in 5 adults with ASD has ever lived independently
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Independent Living Snapshots
• Only 1 in 5 adults with ASD has ever lived independently • 49% of adults with ASD live in the home of a relative
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Independent Living Snapshots
• Only 1 in 5 adults with ASD has ever lived independently • 49% of adults with ASD live in the home of a relative
Living breakdown: —Parent/relative 49% —Group home 27% —Independent 10% —Institution 8% —Other 5%
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Independent Living Snapshots
• Only 1 in 5 adults with ASD has ever lived independently • 49% of adults with ASD live in the home of a relative
Living breakdown: —Parent/relative 49% —Group home 27% —Independent 10% —Institution 8% —Other 5%
43% of adults with ASD choose their daily schedule (i.e. when they wake up, go to sleep…) and only 40% choose what to spend their own money on
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Independent Living Snapshots-2
74% have never participated in a self-advocacy meeting or event. Only 15% have and the other 11% don’t have the opportunity.
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Independent Living Snapshots-2
74% have never participated in a self-advocacy meeting or event. Only 15% have and the other 11% don’t have the opportunity.
Most common mode of transit is:
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Independent Living Snapshots-2
74% have never participated in a self-advocacy meeting or event. Only 15% have and the other 11% don’t have the opportunity.
Most common mode of transit is: —Rides from family and friends 62% —Rides from staff in a staff vehicle 37% —Walks, drives, or bikes self 30% —Public transit 21%
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Schools
• “No Recess!” (from Barry) Schools
• “No Recess!” (from Barry) • Mental Health for one end Schools
• “No Recess!” (from Barry) • Mental Health for one end • Community Involvement for the other. For example… Schools
• “No Recess!” (from Barry) • Mental Health for one end • Community Involvement for the other. For example... • Jack at the Mall Schools
• “No Recess!” (from Barry) • Mental Health for one end • Community Involvement for the other. For example... • Jack at the Mall • Understanding a Student’s Perspective and Experience, Rather Than Simply Try to Manage Behavior. Schools
• “No Recess!” (from Barry) • Mental Health for one end • Community Involvement for the other. For example... • Jack at the Mall • Understanding a Student’s Perspective and Experience, Rather Than Simply Try to Manage Behavior. • Every behavior is a story trying to be told Schools
• “No Recess!” (from Barry) • Mental Health for one end • Community Involvement for the other. For example... • Jack at the Mall • Understanding a Student’s Perspective and Experience, Rather Than Simply Try to Manage Behavior. • Every behavior is a story trying to be told • Trust and love School Snapshots • In high school, only 58% had a transition plan by the required age
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University School Snapshots • In high school, only 58% had a transition plan by the required age
Right after high school…
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University School Snapshots • In high school, only 58% had a transition plan by the required age
Right after high school… • Only 76% of adults with ASD socialized
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University School Snapshots • In high school, only 58% had a transition plan by the required age
Right after high school… • Only 76% of adults with ASD socialized • Only 37% received VR services, and
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University School Snapshots • In high school, only 58% had a transition plan by the required age
Right after high school… • Only 76% of adults with ASD socialized • Only 37% received VR services, and • Only 68% had any community participation
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University School Snapshots • In high school, only 58% had a transition plan by the required age
Right after high school… • Only 76% of adults with ASD socialized • Only 37% received VR services, and • Only 68% had any community participation • 36% enter colleges or tech schools after high school (70% of these attended 2-year colleges)
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University School Snapshots • In high school, only 58% had a transition plan by the required age
Right after high school… • Only 76% of adults with ASD socialized • Only 37% received VR services, and • Only 68% had any community participation • 36% enter colleges or tech schools after high school (70% of these attended 2-year colleges) • 37% of adults with ASD had no work or education to go in to
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University
Sports
• Obvious physical benefit + motor skills Sports
• Obvious physical benefit + motor skills • Arena where certain emotions are appropriate (and where it is safe to apply them) Sports
• Obvious physical benefit + motor skills • Arena where certain emotions are appropriate (and where it is safe to apply them) • Notions of competition Sports
• Obvious physical benefit + motor skills • Arena where certain emotions are appropriate (and where it is safe to apply them) • Notions of competition • Hayley Wickenheiser and the school in Houston Sports
• Obvious physical benefit + motor skills • Arena where certain emotions are appropriate (and where it is safe to apply them) • Notions of competition • Hayley Wickenheiser and the school in Houston • Confidence Sports
• Obvious physical benefit + motor skills • Arena where certain emotions are appropriate (and where it is safe to apply them) • Notions of competition • Hayley Wickenheiser and the school in Houston • Confidence • No slight to the arts intended! Romance
• Romance vs. Communication (Non-verbal communication vs. text) Romance
• Romance vs. Communication (Non-verbal communication vs. text) • Dating: Get rid of the scripts! Libraries, turtle migrations… Romance
• Romance vs. Communication (Non-verbal communication vs. text) • Dating: Get rid of the scripts! Libraries, turtle migrations… • “The 36 Questions” Romance
• Romance vs. Communication (Non-verbal communication vs. text) • Dating: Get rid of the scripts! Libraries, turtle migrations… • “The 36 Questions” • Massage (take a class) Romance
• Romance vs. Communication (Non-verbal communication vs. text) • Dating: Get rid of the scripts! Libraries, turtle migrations… • “The 36 Questions” • Massage (take a class) • Kissing (there is no class for that) Sex
• Friendships first? Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation • Sexual pluralism Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation • Sexual pluralism • Porn: Cons (fantasy, context) and pros (abstinence prevention, visual teacher) Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation • Sexual pluralism • Porn: Cons (fantasy, context) and pros (abstinence prevention, visual teacher) • SOR Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation • Sexual pluralism • Porn: Cons (fantasy, context) and pros (abstinence prevention, visual teacher) • SOR • “Whipped it out” Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation • Sexual pluralism • Porn: Cons (fantasy, context) and pros (abstinence prevention, visual teacher) • SOR • “Whipped it out” • LGBTQ and different relationship structures Sex
• Friendships first? • Bodies vs. minds. Someone has to teach them to… • Watch the curriculums...censorship—especially in the autism world…reframing the conversation • Sexual pluralism • Porn: Cons (fantasy, context) and pros (abstinence prevention, visual teacher) • SOR • “Whipped it out” • LGBTQ and different relationship structures • It’s mean… Travel
• Scope of travel for a spectrum person (the more exotic . . .) Travel
• Scope of travel for a spectrum person (the more exotic . . .) • Functional levels mean nothing herein Travel
• Scope of travel for a spectrum person (the more exotic . . .) • Functional levels mean nothing herein • The clean slate Travel
• Scope of travel for a spectrum person (the more exotic . . .) • Functional levels mean nothing herein • The clean slate • Independence (though perhaps not independent skills). Trying without reprecussions Travel
• Scope of travel for a spectrum person (the more exotic . . .) • Functional levels mean nothing herein • The clean slate • Independence (though perhaps not independent skills). Trying without reprecussions • Confidence The “Work Spectrum” The “Work Spectrum”
The Arts & University Life The “Work Spectrum”
The Arts & The military University Life The “Work Spectrum” The 9-5 office job
The Arts & The military University Life Employment Snapshots • Mailrooms, sheltered workshops…
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Employment Snapshots • Mailrooms, sheltered workshops…
• Only 14% of adults held a paying job in the community
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Employment Snapshots • Mailrooms, sheltered workshops…
• Only 14% of adults held a paying job in the community
• Only 50% of unemployed adults said that they would like to have a job
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Employment Snapshots • Mailrooms, sheltered workshops…
• Only 14% of adults held a paying job in the community
• Only 50% of unemployed adults said that they would like to have a job
• Avg. amount spent on autism VR user $17,211 (Avg. amount spent on non-autism VR user $17,779)
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University Employment Snapshots
PCT of where adults with ASD worked:
—Office and admin support 22% —Food prep/serving 16% —Grounds, cleaning, maintenance 11% —Sales 11% —Transportation or moving 9% —Production 9% —Other 23%
National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | Drexel University The New Frontiers in Personnel Agencies
• Specialisterne
• Aspiritech
• Ultra Testing
• Nonpareil Institute
• ASTEP/Integrate But . . .
• A handful of programs serving…100 per year? But . . .
• A handful of programs serving…100 per year?
• Working age is 21-65 But . . .
• A handful of programs serving…100 per year?
• Working age is 21-65
• 75-85% unemployment number But . . .
• A handful of programs serving…100 per year?
• Working age is 21-65
• 75-85% unemployment number
• A nation of 319 million But . . .
• A handful of programs serving…100 per year?
• Working age is 21-65
• 75-85% unemployment number
• A nation of 319 million
• Prevalence rate is 1 in 54 But . . .
• A handful of programs serving…100 per year?
• Working age is 21-65
• 75-85% unemployment number
• A nation of 319 million
• Prevalence rate is 1 in 54
• = over 2.6 million needing to be served Ouch. Large companies… Large companies have entire departments dedicated to preserving civil rights, inclusive practices, and equality on their jobsites. They are called “Diversity & Inclusion” departments. How did we once (or how do we still) define “Diversity & Inclusion” (D&I)?
• Gender How did we once (or how do we still) define “Diversity & Inclusion” (D&I)?
• Gender • Race How did we once (or how do we still) define “Diversity & Inclusion” (D&I)?
• Gender • Race • Religion How did we once (or how do we still) define “Diversity & Inclusion” (D&I)?
• Gender • Race • Religion • Sexual Orientation How did we once (or how do we still) define “Diversity & Inclusion” (D&I)?
• Gender • Race • Religion • Sexual Orientation • Disabilities How did we once (or how do we still) define “Diversity & Inclusion” (D&I)?
• Gender • Race • Religion • Sexual Orientation • Disabilities • Veteran Status With one exception, the unifying principle is legal compliance And in practice? (My guesswork only) How many are focused on…
• Gender 95% And in practice? (My guesswork only) How many are focused on…
• Gender 95% • Race 98% And in practice? (My guesswork only) How many are focused on…
• Gender 95% • Race 98% • Religion 70% (predominantly Christian) And in practice? (My guesswork only) How many are focused on…
• Gender 95% • Race 98% • Religion 70% (predominantly Christian) • Sexual Orientation 45% (but growing) And in practice? (My guesswork only) How many are focused on…
• Gender 95% • Race 98% • Religion 70% (predominantly Christian) • Sexual Orientation 45% (but growing) • Disabilities (10%) And in practice? (My guesswork only) How many are focused on…
• Gender 95% • Race 98% • Religion 70% (predominantly Christian) • Sexual Orientation 45% (but growing) • Disabilities (10%) • Veteran Status (8%) Employee Resource Groups (ERG) Harvard Business Review How did we define Disability?
Slide developed with Marcia Scheiner and ASTEP. How did we define Disability? Visible Disabilities:
Slide developed with Marcia Scheiner and ASTEP. How did we define Disability? Visible Disabilities:
•Physical – mobility limitations…
•Sensory – hearing, vision…
Slide developed with Marcia Scheiner and ASTEP. How did we define Disability? Visible Disabilities:
•Physical – mobility limitations…
•Sensory – hearing, vision…
Non-Apparent Disabilities:
Slide developed with Marcia Scheiner and ASTEP. How did we define Disability? Visible Disabilities:
•Physical – mobility limitations…
•Sensory – hearing, vision…
Non-Apparent Disabilities:
•Mental health – depression, anxiety…
•Physical health – diabetes, epilepsy…
•Learning – dyslexia, ADD…
•Developmental – autism spectrum disorders…
Slide developed with Marcia Scheiner and ASTEP. How now? How now?
Access How now?
Access
Non-Apparent Disabilities How now?
Access
Non-Apparent Disabilities
Health Possible signs of a Non-Apparently Disabled (NAD) worker • Trouble paying attention • Asking to have information repeated regularly • Difficulty following directions; confused • Sudden mood changes • Anxiety • Sensory issues • Extreme fatigue • Persistent lateness
Slide developed with Marcia Scheiner and ASTEP. Possible strengths of a NAD worker • Accuracy and attention to detail • High level of technical ability • Good concentration on routines and procedures • Memory for facts and figures • Logical approach to tasks • Honesty • Loyalty
183 Slide developed with Marcia Scheiner and ASTEP. In 2010, 411 Fortune 5000 employers were asked about employees with disabilities. A third perceive employees with disabilities to be more dedicated and less likely to leave the job. Dedication Turnover
35% MORE 33% LESS 62% SAME 58% SAME
3% LESS 9% MORE
Slide developed with Marcia Scheiner and ASTEP. Source: “The Employment of Americans with Disabilities” survey sponsored by the Kessler Foundation & NOD, October 2010 Silicon Valley Anyone? And why is there fear of non-apparent disabilities?
• Disclosure
• Accommodations
• ADA
Slide developed with Marcia Scheiner and ASTEP. ADA and Non-Apparent Disabilities
– Must be qualified for the job
Slide developed with Marcia Scheiner and ASTEP. ADA and Non-Apparent Disabilities
– Must be qualified for the job – Must be able to perform the essential functions of a job with or without a reasonable accommodation
Slide developed with Marcia Scheiner and ASTEP. ADA and Non-Apparent Disabilities
– Must be qualified for the job – Must be able to perform the essential functions of a job with or without a reasonable accommodation – Must disclose the disability to receive accommodations
Slide developed with Marcia Scheiner and ASTEP. ADA and Non-Apparent Disabilities
– Must be qualified for the job – Must be able to perform the essential functions of a job with or without a reasonable accommodation – Must disclose the disability to receive accommodations – Accommodations must be reasonable and not present an undue hardship
Slide developed with Marcia Scheiner and ASTEP. ADA and Non-Apparent Disabilities
– Must be qualified for the job – Must be able to perform the essential functions of a job with or without a reasonable accommodation – Must disclose the disability to receive accommodations – Accommodations must be reasonable and not present an undue hardship – Not IDEA
Slide developed with Marcia Scheiner and ASTEP. Crisis = Opportunity
75-85% Unemployment rate So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence
• They don’t get commended for nobly “trying” So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence
• They don’t get commended for nobly “trying”
• Top-down initiative So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence
• They don’t get commended for nobly “trying”
• Top-down initiative
• Love of leadership? Ha! So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence
• They don’t get commended for nobly “trying”
• Top-down initiative
• Love of leadership? Ha!
• They Don’t Have to So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence
• They don’t get commended for nobly “trying”
• Top-down initiative
• Love of leadership? Ha!
• They Don’t Have to
• Our salesmanship in the past… So why aren’t large businesses HIRING?
• Lack of Training (strengths, challenges, accommodations…etc.)—Confidence
• They don’t get commended for nobly “trying”
• Top-down initiative
• Love of leadership? Ha!
• They Don’t Have to
• Our salesmanship in the past…
• The elephant in the tub… “professionalism” Challenges on our end: “Getting”
•Job skills training •VR programs not addressing the social •Keywords •Innovative materials? Baloney. Be boring!!! •Interviews! But seriously… •Networking—Who hires strangers? •The LinkedIn generation •Like campus recruitment…all social. Retention Three Types of Non-Apparently Disabled Employee Three Types of Non-Apparently Disabled Employee
• Undiagnosed
Slide developed with Marcia Scheiner and ASTEP. Three Types of Non-Apparently Disabled Employee
• Undiagnosed • Diagnosed and undisclosed
Slide developed with Marcia Scheiner and ASTEP. Three Types of Non-Apparently Disabled Employee
• Undiagnosed • Diagnosed and undisclosed • Diagnosed and disclosed
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
▪ It’s still too close to the “Don’t ask, don’t tell” days
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
▪ It’s still too close to the “Don’t ask, don’t tell” days
▪ They don’t know the warning signs (that someone might have a non-apparent disability)
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
▪ It’s still too close to the “Don’t ask, don’t tell” days
▪ They don’t know the warning signs (that someone might have a non-apparent disability)
▪ And when they do, they legally cannot suggest a condition exists
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
▪ It’s still too close to the “Don’t ask, don’t tell” days
▪ They don’t know the warning signs (that someone might have a non-apparent disability)
▪ And when they do, they legally cannot suggest a condition exists
▪ They’re not certain of what accommodations they can maneuver (cost, co-worker resentment…etc.)
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
▪ It’s still too close to the “Don’t ask, don’t tell” days
▪ They don’t know the warning signs (that someone might have a non-apparent disability)
▪ And when they do, they legally cannot suggest a condition exists
▪ They’re not certain of what accommodations they can maneuver (cost, co-worker resentment…etc.)
▪ Can’t successfully tap into increasing D&I numbers because they can’t earn the employee trust needed for disclosure
Slide developed with Marcia Scheiner and ASTEP. So why aren’t businesses RETAINING us?
▪ It’s still too close to the “Don’t ask, don’t tell” days
▪ They don’t know the warning signs (that someone might have a non-apparent disability)
▪ And when they do, they legally cannot suggest a condition exists
▪ They’re not certain of what accommodations they can maneuver (cost, co-worker resentment…etc.)
▪ Can’t successfully tap into increasing D&I numbers because they can’t earn the employee trust needed for disclosure
▪ Fear of what to do when an employee discloses
Slide developed with Marcia Scheiner and ASTEP. Why should businesses want us to disclose?
•The cost of accommodation is so much lower than typically feared– employers estimate that workplace accommodations cost on average less than $500 for an employee with a disability
Slide developed with Marcia Scheiner and ASTEP. Why should businesses want us to disclose?
•The cost of accommodation is so much lower than typically feared– employers estimate that workplace accommodations cost on average less than $500 for an employee with a disability
•The ability to discuss solutions with them
Slide developed with Marcia Scheiner and ASTEP. Why should businesses want us to disclose?
•The cost of accommodation is so much lower than typically feared– employers estimate that workplace accommodations cost on average less than $500 for an employee with a disability
•The ability to discuss solutions with them
•Every study indicates that companies that are more diverse have been proven to outperform their peers
Slide developed with Marcia Scheiner and ASTEP. What would help convince one of us to disclose?
• Trainings for managers and colleagues, thus convincing us that our differing behaviors and histories will not be used against us
Slide developed with Marcia Scheiner and ASTEP. What would help convince one of us to disclose?
•Trainings for managers and colleagues, thus convincing us that our differing behaviors and histories will not be used against us •Supervisors/ colleague/ HR staff demonstrating an understanding of—maybe even a respect for—our condition
Slide developed with Marcia Scheiner and ASTEP. What would help convince one of us to disclose?
•Trainings for managers and colleagues, thus convincing us that our differing behaviors and histories will not be used against us •Supervisors/ colleague/ HR staff demonstrating an understanding of—maybe even a respect for—our condition •Seeing other elements of D&I accommodated, valued, and respected
Slide developed with Marcia Scheiner and ASTEP. The secret to businesses addressing 90% of the challenges…
Slide developed with Marcia Scheiner and ASTEP. The secret to businesses addressing 90% of the challenges…
Slide developed with Marcia Scheiner and ASTEP. The secret to businesses addressing 90% of the challenges…
• Communicate
Slide developed with Marcia Scheiner and ASTEP. The secret to businesses addressing 90% of the challenges…
• Communicate • Communicate
Slide developed with Marcia Scheiner and ASTEP. The secret to businesses addressing 90% of the challenges…
• Communicate • Communicate • Communicate
Slide developed with Marcia Scheiner and ASTEP. Challenges on our end: “Keeping”
• The Hidden Curriculum Challenges on our end: “Keeping”
• The Hidden Curriculum • Executive Functioning Challenges on our end: “Keeping”
• The Hidden Curriculum • Executive Functioning • Sensory Challenges on our end: “Keeping”
• The Hidden Curriculum • Executive Functioning • Sensory • Inability or discomfort towards Disclosure The Hidden Curriculum…
Understanding unstated rules in social situations that make us fit in.
•Information that most people learn without having to be taught •“Non-Verbal Communication” such as gesture, or tone •Unwritten rules that most people understand •Knowing what other people might be thinking
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for the Hidden Curriculum…
•Clear communication – write it down
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for the Hidden Curriculum…
•Clear communication – write it down •Detailed job descriptions
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for the Hidden Curriculum…
•Clear communication – write it down •Detailed job descriptions •Limited use of idioms
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for the Hidden Curriculum…
•Clear communication – write it down •Detailed job descriptions •Limited use of idioms •Mentoring
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for the Hidden Curriculum…
•Clear communication – write it down •Detailed job descriptions •Limited use of idioms •Mentoring •Rules help (and the importance of how they’re delivered)
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for the Hidden Curriculum…
•Clear communication – write it down •Detailed job descriptions •Limited use of idioms •Mentoring •Rules help (and the importance of how they’re delivered) •Structured work environment
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning…
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning… Mental processes that allow us to plan, organize, strategize, and pay attention to and remember details.
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning… Mental processes that allow us to plan, organize, strategize, and pay attention to and remember details.
Includes:
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning… Mental processes that allow us to plan, organize, strategize, and pay attention to and remember details.
Includes: – Organizational skills – Time management – Multi-tasking – Transitions – Prioritization – Focus – Emotional Regulation
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning… Mental processes that allow us to plan, organize, strategize, and pay attention to and remember details.
Includes: – Organizational skills – Time management – Multi-tasking – Transitions – Prioritization – Focus – Emotional Regulation
•Can be seen as short-term memory challenges
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning… Mental processes that allow us to plan, organize, strategize, and pay attention to and remember details.
Includes: – Organizational skills – Time management – Multi-tasking – Transitions – Prioritization – Focus – Emotional Regulation
•Can be seen as short-term memory challenges •Not prevalent in all spectrum individuals
Slide developed with Marcia Scheiner and ASTEP. Executive Functioning…
Mental processes that allow us to plan, organize, strategize, and pay attention to and remember details.
Includes: – Organizational skills – Time management – Multi-tasking – Transitions – Prioritization – Focus
– Emotional Regulation
•Can be seen as short-term memory challenges •Not prevalent in all spectrum individuals
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Emotional Regulation
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Emotional Regulation
“We can’t hear you, we can’t learn”
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
•Clear communication – write it down
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
•Clear communication – write it down •Detailed job descriptions
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
•Clear communication – write it down •Detailed job descriptions •Flexible work hours
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
•Clear communication – write it down •Detailed job descriptions •Flexible work hours •Mentoring
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
•Clear communication – write it down •Detailed job descriptions •Flexible work hours •Mentoring •Structured work environment incl. breaks
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
•Clear communication – write it down •Detailed job descriptions •Flexible work hours •Mentoring •Structured work environment incl. breaks •Solutions revolve around going slow, employees taking notes, and supervisors providing written instructions
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
Slide developed with Marcia Scheiner and ASTEP. Management Strategies for Executive Functioning
Assume trauma
Slide developed with Marcia Scheiner and ASTEP. Sensory…
• Sight • Sounds • Touch • Smell • Taste Possible Accommodations for Sensory Challenges
• Lighting adjustments
Slide developed with Marcia Scheiner and ASTEP. Possible Accommodations for Sensory Challenges
• Lighting adjustments • Other workspace adjustments
Slide developed with Marcia Scheiner and ASTEP. Possible Accommodations for Sensory Challenges
• Lighting adjustments • Other workspace adjustments • Noise cancelling technology
Slide developed with Marcia Scheiner and ASTEP. Possible Accommodations for Sensory Challenges
• Lighting adjustments • Other workspace adjustments • Noise cancelling technology • Flexible work hours
Slide developed with Marcia Scheiner and ASTEP. Possible Accommodations for Sensory Challenges
• Lighting adjustments • Other workspace adjustments • Noise cancelling technology • Flexible work hours • Telecommute
Slide developed with Marcia Scheiner and ASTEP. How do we define non-apparent disabilities? How do we define non-apparent disabilities?
Culture by culture How do we define non-apparent disabilities?
Culture by culture
Many hidden disabilities are defined by differing behaviors, but what is a “differing behavior” can vary wildly How do we define non-apparent disabilities?
Culture by culture
Many hidden disabilities are defined by differing behaviors, but what is a “differing behavior” can vary wildly
The importance placed on socialization can also differ from culture to culture Benevolence? Or Kicking the Tires with…
•Barclays •PriceWaterhouseCooper •Thomson Reuters •TIAA-Cref •LinkedIn •Accenture •Nike …and others. Majorities and Minorities What Is Disclosure? What Is Disclosure?
• Telling someone that you have Autism or AS What Is Disclosure?
• Telling someone that you have Autism or AS • Why? What Is Disclosure?
• Telling someone that you have Autism or AS • Why? • How? On the job? In writing What Is Disclosure?
• Telling someone that you have Autism or AS • Why? • How? On the job? In writing • How? With family, email address books What Is Disclosure?
• Telling someone that you have Autism or AS • Why? • How? On the job? In writing • How? With family, email address books • When? There are signs, but no rules.
Disclosure is situation-dependent Will these large businesses be the entities that save us? Meanwhile…(if unemployed)
• The woman from the Philippines Meanwhile…(if unemployed)
• The woman from the Philippines • Forgiveness vs the cowboy culture Meanwhile…(if unemployed)
• The woman from the Philippines • Forgiveness vs the cowboy culture • Learn a trade! Meanwhile…(if unemployed)
•The woman from the Philippines •Forgiveness vs the cowboy culture •Learn a trade! •“Lesser work” – Minimum wage, volunteer Meanwhile…(if unemployed)
•The woman from the Philippines •Forgiveness vs the cowboy culture •Learn a trade! •“Lesser work” – Minimum wage, volunteer •Small biz (REAL growth), non-profit… Meanwhile…(if unemployed)
•The woman from the Philippines •Forgiveness vs the cowboy culture •Learn a trade! •“Lesser work” – Minimum wage, volunteer •Small biz (REAL growth), non-profit… •Exercise, meditate, eat well, sleep well… No Diagnosis is “the Bad Guy” No Diagnosis is “the Bad Guy”
• Anxiety No Diagnosis is “the Bad Guy”
• Anxiety • Anger No Diagnosis is “the Bad Guy”
• Anxiety • Anger • Depression No Diagnosis is “the Bad Guy”
• Anxiety • Anger • Depression • And for us? Distrust Closing Items Confidence “I know what’s going on with you, you’ve just got too many wires…” “No, doctor. My problem is that the wires aren’t insulated well enough.”
--- A 5-year old boy with AS “Failure” Starting as early as possible...
Opportunities to practice independence
and to fail The biggest obstacle . . . …is that no one wants to please more than us. …is that no one wants to please more than us.
And “wants to please,” will always be “can’t handle rejection” to some people. Two Wonderful Words: Two Wonderful Words:
1. “So” Two Wonderful Words:
1. “So” 2. “what” Perspective Our Makeup
• Gender • Race • Economic Background • Sexual Orientation • Neurological Makeup • Quality of Supports • Culture
Perspective
“Security is a superstition. It does not exist in nature. Life is either a daring adventure, or nothing.” Perspective
“Security is a superstition. It does not exist in nature. Life is either a daring adventure, or nothing.”
—Helen Keller Perspective
—Freud Perspective
If you really want someone to change, then you have to change.
—Freud Thank you for listening!!!