11/21/2011
HISTORY OF AUTISM
SCOTT STANDIFER
Disability Policy & Studies 11/21/2011 11/21/2011
Assistant Director Region 7 TACE (Technical Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability
Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Assistance & Continuing A HISTORY Education) – Formerly RCEP 7 Supporting State Voc Rehab Agencies in MO, IA, NE, KS OF AUTISM
Dr. Scott Standifer Primary Author, online Adult 1 November 22, 2011 Autism & Employment: a guide for rehabilitation professionals
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HISTORY OF AUTISM 3 HISTORY OF AUTISM
SCOTT STANDIFER AGENDA 11/21/2011 Organizer, Autism Works National Conference Session 1 – Short History March 6 & 7, 2011, St. Louis, MO First Descriptions of Autism Leo Kanner
"Building Better Careers for Adults with Autism" Missouri of University & Studies, Policy Disability Hans Asperger Autism Works Facebook Page Bruno Bettelheim
Second Generation of Autism
National expansion Sibyl Elgar of Walgreens autism Bernie Rimland – Autism Society DAN! employment Eric Schopler – TEACHH Lovaas – ABA Improving Transition Lorna Wing for clients with ASD Disa Panel of employers bilit11/21/2011 A National Conference on Autism & Employmenty Open job counseling Poli session cy & Stu dies, 4 Uni vers ity of
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HISTORY OF AUTISM
AGENDA
Session 1 – Short History, Continued 11/21/2011 11/21/2011 New Advocates Temple Grandin
Autism Network International Missouri of University & Studies, Policy Disability
Autism Speaks Missouri of University & Studies, Policy Disability The Great Wave IRST IDEA Data F CDC Data RSA Data DESCRIPTIONS
6 1943 – mid-1960s
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HISTORY OF AUTISM HISTORY OF AUTISM LEO KANNER LEO KANNER 11/21/2011 11/21/2011 Leo Kanner Leo Kanner 1943 – defined autism Term Autism borrowed from descriptions
"Autistic Disturbances of Affective of schizophrenia Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Contact" Missouri of University & Studies, Policy Disability Called condition "Early Infantile Autism" Running child psychiatric clinic at John's Hopkins University to distinguish it from schizophrenia
Described 11 children with similar Emphasized autism not progressive features
Freudian Theory Kanner's original description Schizophrenia believed caused by Lack of affective contact parents Anxious obsession with sameness in environment & routine Kanner discussed possibility for autism Fascination with objects Noted mothers seemed cold, unemotional Mutism or a "private" language Coined the term "Refrigerator Mother" 7 8 Seemed to have mixed opinion on causes
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HISTORY OF AUTISM HISTORY OF AUTISM HANS ASPERGER HANS ASPERGER 11/21/2011 11/21/2011 Hans Asperger Work overlooked until 1979 Working at University of Vienna's Published in German children's clinic Not convincing explanation Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Missouri of University & Studies, Policy Disability The year after Kanner, described group German established language of of 4 children science
Called the condition "Autistic New Theory Psychopathology" Adam Feinstein, A History of Autism
Features Nazi Influence Language disturbances – delayed language, odd use of Austria under Nazi rule, Nazi's pronouns, tend to lecture/discourse eliminating "defective" people Difficulty in two-way conversations & social signals Asperger used "Nazi-friendly" language in description of children/condition Clumsy movements and gestures, often not matching conversation Outside readers would dismiss as Nazi 9 sympathizer 10 Fixation and skill in one or two topics Often very smart
HISTORY OF AUTISM HISTORY OF AUTISM
BRUNO BETTELHEIM BRUNO BETTELHEIM 11/21/2011 11/21/2011 Director of child psychiatric Survivor of Nazi Concentration clinic at University of Chicago Camp Two schools of thought on impact Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Brought public awareness of autism Missouri of University & Studies, Policy Disability
Series of magazine articles starting in Supporters – empathized with children as 1959 survivors of family horrors
1967 published The Empty Fortress Camps tore down personalities, so he used same techniques to "rebuild" children International best-seller Detractors – re-enacting personal memories Advocate of Freudian Theory with children as victims Strong advocate of refrigerator mother theory Authoritarian approach to
Treatment required pulling children out of care of children with family situation "causing" the autism autism
Profiles 4 cases of "cured" children Offensive to many in autism community, then Refrigerator mother theory may be self and now reflection 11 12
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HISTORY OF AUTISM CHANGE OF HABIT MOVIE 11/21/2011
1969 Elvis Presley Movie 11/21/2011 Elvis is a doctor Mary Tyler Moore is a nun Missouri of University & Studies, Policy Disability SECOND Missouri of University & Studies, Policy Disability Elvis cures a young girl of autism by GENERATION hugging her and saying he loves her 14 mid-1960s – mid-1980s
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HISTORY OF AUTISM HISTORY OF AUTISM
SYBIL ELGAR BERNIE RIMLAND 11/21/2011 11/21/2011 National Society for Autistic San Diego-based psychologist Children (UK) - 1962 with son diagnosed with autism Parent group in London in 1958 Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Promote awareness & services for children Appalled by Bettelheim
Sybil Elgar 1964 – published Infantile Autism: Montessori trained The Syndrome and Its Implications 1962 - began school for First major assault on Bettelheim children with autism in her 1965 – Co-founded National Society basement for Autistic Children (now the Part of Autistic Society Autism Society of America) 1965 - Formal school opened on Florence Road in West London
Foundation of education 15 16 intervention movement in autism
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HISTORY OF AUTISM HISTORY OF AUTISM
BERNIE RIMLAND ERIC SCHOPLER
11/21/2011 Appalled by Bettelheim's theories and 11/21/2011 In 1980s became focused on techniques biological treatments for autism 1964 - Dissertation proving children had 1995 – Founded Defeat Autism Missouri of University & Studies, Policy Disability Missouri of University & Studies, Policy Disability Now! (DAN) neurological differences Part of Rimland's Autism Research Follow-up studies - parents no different Institute (ARI) from other parents Medical researchers investigating "alternative" therapies Spoke at first national convention of
Special Diets (allergies) NAS in England Chelation (extraction of heavy metals) Visited Sybil Elgar's School Supplements Suggest autism may be a host of Moved to U of North Carolina disorders with common outcomes, not Began including parents as research one disorder assistants 17 18 Early proponent of vaccine theory
HISTORY OF AUTISM HISTORY OF AUTISM ERIC SCHOPLER IVAR LOVAAS 11/21/2011 11/21/2011 1972 founded TEACCH Research with children at UCLA, early 1960s Treatment and Education of Autistic Applied Behaviorist (Skinner) techniques to and Communication related autism Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability handicapped CHildren Missouri of University & Studies, Policy Disability System of both rewards and punishments Elaborated much of Sybil Elgar's Punishments drawn from techniques of mental approach, but in a research setting institutions A major force in autism 1965 Life Magazine photo essay, "Screams, education Slaps, & Love" captured darker side of techniques
TEACCH Approach TEACCH Lovaas later developed milder . Understand impact of autism on each person techniques . Focus on strengths Harsh ones were "best we had" . Address understanding and perception, not behavior. . Communicate "why" . Structure environmental supports, particularly visual 19 20 supports, address sensory issues . Involve family members
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HISTORY OF AUTISM HISTORY OF AUTISM IVAR LOVAAS LORNA WING 11/21/2011 11/21/2011 Adapted Applied Behavior Co-founder of National Autistic Analysis to autism treatment Society, mother of child with autism Called ABA, Lovaas Technique, or Researcher at Maudsley Hospital in Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Missouri of University & Studies, Policy Disability Intensive Behavioral Intervention London in 1960s & 1970s
A major feature of autism 1970s - Set out to validate Kanner's intervention description by surveying children with disabilities in Camberwell Differences from TEACCH Used three core features for ABA focused on behavior, not cognition functional definition ABA focused on achieving "normalcy" and replacing problem behaviors with acceptable ones Found Kanner accurate for some, but not broad Lovaas Technique VERY time intensive enough for others
Suggested a "continuum", later "autism spectrum" Similarities with TEACCH 21 22 In practice, both draw from the other when developing "Triad" features became part of DSM criteria in 1987 specific interventions– whatever works
HISTORY OF AUTISM LORNA WING 11/21/2011
1981 – Published paper 11/21/2011 introducing Hans' Asperger's
work to English-speaking world Missouri of University & Studies, Policy Disability
Coined term Asperger Syndrome Missouri of University & Studies, Policy Disability Asperger added to DSM in 1994 NEW
Asperger Syndrome Qualitative impairment in social interaction Stereotyped and restricted patterns of behavior, ADVOCATES activities and interests No delay in cognitive development or language Intense preoccupation with a narrow subject, one- 24 sided verbosity, and physical clumsiness are typical mid-1980s – today
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HISTORY OF AUTISM HISTORY OF AUTISM NEW ADVOCATES TEMPLE GRANDIN
Mid 1980s, ASA Co-founder Ruth 11/21/2011 Grew up in New Hampshire in 1960s 11/21/2011 Sullivan on the way to ASA Received something like Lovaas conference in Chicago technique
Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Attended college, earning PhD in Missouri of University & Studies, Policy Disability Met Temple Grandin Animal Science Asked to present at next ASA Teaches at Colorado State Univ. conference Designs livestock facilities
After ASA conference, became speaker
Published first book in 1986
Featured in Oliver Sacks' book in 1995 25 26 2010 HBO Biographical Movie
HISTORY OF AUTISM HISTORY OF AUTISM
NEW ADVOCATES AUTISM NETWORK INTERNATIONAL 11/21/2011 11/21/2011 1989- Movie Rain Man Late 1980s, people with autism attending autism conferences Sympathetic view as a way to meet each other Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Based on real Not autism friendly environments individuals 3 adults with autism - Jim Sinclair, Individualistic Donna Williams, Kathy Lissner - met in communication issues were well St. Louis for 3-day visit depicted Sinclair – "I had met someone who came from the same planet as me" Some false impressions Started Autism Network International 1992 – first newsletter Sinclair promoted on internet
27 1993 - "Don't Mourn For Us" (Sinclair), directly 28 challenging the "autism as tragedy“ image 1994 – list serve for people with autism
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HISTORY OF AUTISM HISTORY OF AUTISM AUTISM NETWORK INTERNATIONAL AUTISM NETWORK INTERNATIONAL
11/21/2011 1996 – Autreat- conference FOR people 11/21/2011 Beginning of autism self advocacy with autism and peer mentoring 2005 – Autscape in UK
Two new concepts: Missouri of University & Studies, Policy Disability Missouri of University & Studies, Policy Disability Multiple self-advocacy groups & Neurodiversity – differences in brain websites today function are part of normal human diversity, not something to be cured
Neurotypical – good-natured term for people who do not have autism
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HISTORY OF AUTISM HISTORY OF AUTISM AUTISM SPEAKS CONFLICT AMONG NEW ADVOCATES 11/21/2011 Bob & Suzanne Wright founded in 11/21/2011 Autism Speaks & Neurodiversity 2005 Movement Grandson diagnosed with autism Often hostile to each other Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Bob former Vice Chair of GE Autism Speaks emphasizes cures/treatments and often portrays autism Sponsors autism research as a "tragedy" in publicity / fund raising campaign Strong focus on causes and biomedical cure Neurodiversity movement feels people with autism should be respected & supported for Conducts awareness and outreach who they are, not viewed as tragedies to be activities aimed at the public and fixed governments
Within 3 years had merged/absorbed three other 31 32 advocacy groups
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HISTORY OF AUTISM THE GREAT WAVE 11/21/2011
11/21/2011 1975 - Education For All Handicapped Children Act (EHA) Beginning of Special Education Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability
Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Did not list specific qualifying disabilities THE GREAT Autism diagnosis still in limbo, medically 1990 - Individuals with Disabilities Education Act (IDEA) WAVE Update of EHA and revisions Now listed 9 specific disabilities, including autism
33 U.S. Dept of Ed began late-1990s – today collecting incidence data for each disability No previous hard data on 34 autism in U.S.
HISTORY OF AUTISM HISTORY OF AUTISM
THE GREAT WAVE THE GREAT WAVE 11/21/2011 11/21/2011 Early 2000, media attention to dramatic rise in Autism The rise has continued, now tracking 15 years prevalence in the United States among children 6 to 21 From US Dept. of Education data years of age, 1993 – 2003 22,000 – 330,000 Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability From US Dept. of Education data – 22,000 to 140,000 Missouri of University & Studies, Policy Disability 1500% increase over 15 years Approximately 650% increase (some sources say 800% +)
Chart from Laidler, J. R.: Pediatrics 2005 Children with ASD, age 6‐21 Children with ASD, age 6‐21
150,000 350,000
100,000 300,000 250,000 50,000 200,000 0 '94 '95 '96 '97 '98 '99 '00 '01 '02 '03 150,000
100,000
50,000 35 36 0 '94'95'96'97'98'99'00'01'02'03'04'05'06'07'08'09
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HISTORY OF AUTISM HISTORY OF AUTISM
THE GREAT WAVE THE GREAT WAVE
Or maybe not 11/21/2011 CDC Data – 2002 - on 11/21/2011
Increases in autism matched by Measuring prevalence in 8 year old children
decreases in other categories Missouri of University & Studies, Policy Disability 2002: 6.6 children with Autism per 1,000 on Missouri of University & Studies, Policy Disability Diagnostic Substitution average Shattuck, P. 2006 (1 in 151 children)
drawn from 14 states/sites
Ranged from 3.3 to 10.6 Anomalies in the data suggest features of the school system and reporting system have a big impact on figures
Laidler, J. R. 2005
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HISTORY OF AUTISM HISTORY OF AUTISM
THE GREAT WAVE HISTORY OF AUTISM – THE GREAT WAVE 11/21/2011 CDC Data – 2002 - on 11/21/2011 Prevalence Debate – is increase "real"?
Measuring prevalence in 8 year old children Prevalence of diagnosis versus "actual" prevalence Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Disability Policy & Studies, University of Missouri of University & Studies, Policy Disability Changes in diagnostic criteria 2002: 6.6 children with Autism per 1,000 on average Increased awareness among public and medical (1 in 151 children) community drawn from 14 states/sites For its tracking, CDC is accepting "diagnoses" from Ranged from 3.3 to 10.6 school staff in addition to medical professionals
Significant variation between states in CDC data 2006: 9 per 1,000 on average (1 in 111 children)
drawn from 11 states/sites
Ranged from 4.2 to 12.1
Missouri among the highest
Some sites showed a decrease over this period 39 40
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HISTORY OF AUTISM THE GREAT WAVE IDEA & RSA DATA COMPARISON 11/21/2011 Unpublished Data from Rehabilitation IDEA Data 1994 - 1999 RSA Data 2003 -2008 Services Administration
Original IDEA chart was
Nationally, the number of people with Autism applying for Missouri of University & Studies, Policy Disability vocational rehabilitation services increased 300% from 1994 – 2009. Enlarging IDEA 2003 to 2008 data to compare similar time scales – the curves are very Increase due similar entirely to
transition 70,000
students 60,000
50,000 2003 is ten 40,000 years after the 30,000 beginning of 20,000 Dept of Ed IDEA 10,000 0 data '94 '95 '96 '97 '98 '99 41
HISTORY OF AUTISM
IDEA & RSA DATA COMPARISON HISTORY OF AUTISM – THE GREAT WAVE 11/21/2011 IDEA Data 1994 - 2009 RSA Data 2003 -2008
350,000 Missouri of University & Studies, Policy Disability
300,000
250,000
200,000
150,000
100,000
50,000
0 '94 '95 '96 '97 '98 '99 '00 '01 '02 '03 '04 '05 '06 '07 '08 '09 Ultimately, it does not matter
Comparing to the 15-year IDEA data, there is Definite, dramatic increase in the number of young reason to think RSA numbers will continue to people defined as having autism who will need adult services climb 44
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