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6/25/10
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Classifica(on of Au(sm Spectrum “Disorder(s)”: History and Implica(ons for Research and
Advocacy Steven Kapp
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Why the fascina(on with au(sm? Pervasive developmental challenges High variability Limited understanding Intervention – especially early? -‐ can help
Rising diagnoses
So, we have “invented knowledge” (Donnellan, 1999)
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Cultural context Capitalism Libertarianism American dream Medical model of health Melting pot? Distrust of establishment Fascination with publicity-‐seeking celebrities Media sensationalism, sound bites Approval-‐seeking politicians
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Medical model ignores strengths
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Independent, original thinking
Honesty
Attention to detail
Intense focus, perseverance
Systematization
Memory
Exceptional, even savant, skills (sometimes)
Local viseo-‐spatial abilities,
perceptional functioning
“Islets” of ability – more like network!
Au(sm is diagnosed by behavior…
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Social communication Repetitive behavior
Social interaction
Behavioral Triad
…but is related to the brain…
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Social cognition Local processing style
Planning and organization
Cognitive Triad
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…and nervous system
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Emotional processing
Motor skills Sensory processing
Neural Triad
Diagnosis ignores neurology… Unusual size of and wiring between brain regions
No clear understanding of effect on behavior Possible clinical uses of neurological research Are brains plastic enough to allow “recovery”?
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Is this true or even desirable?
…and gene(cs Autism is highly (up to 90%) genetic, but… Genetically complex
So may be “autisms”
Implications for research? Better diagnoses, interventions, medication? Prenatal testing?
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We must beware of the history of eugenics when advancing science…
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Au(sm as an educa(onal classifica(on
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• Autism added as a special education label in 1990; fully implemented by 1992
• IDEA criteria differ from DSM • Differs state-‐to-‐state; eligibility criteria unclear • School numbers of autism-‐identified students below clinical numbers
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Au(sm in IDEA Developmental disability adversely affecting:
Verbal, nonverbal communication Social interaction Educational performance
Other associated characteristics Repetitive activities, stereotyped movements Resistance to change in routines or environment Unusual responses to sensory experiences
Generally, but not always, evident before age three Does not apply if an emotional disturbance mainly accounts for educational need
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(Code of Federal Regulations, 2009)
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Schools and students’ development • Socio-‐emotional competence is key to academic competence • What is the role of the school? • Teach “hidden curriculum”? • Facilitate peer engagement at lunch, on playground, after school?
• Teach life and vocational skills? • Prevent and protect students from bullying? • Promote healthy development?
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Rising prevalence, but incidence?
Changed understanding Expanded diagnostic criteria Diagnostic substitution Sharper diagnostic instruments Earlier diagnoses
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May be no autism “epidemic”
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Expanded diagnos(c criteria In DSM: I and II: Broad, continuous, biopsychosocial model III and IV: Symptom-‐based, categorical medical model Problems: Difficult to use; within-‐ and between-‐group differences
5: Reclassified categories, more dimensional? 6?: Genetics, neurology advances…
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Au(sm as a psychosis, and “refrigerator mothers”
“Early infantile autism” introduced in 1943 Cold parenting blamed for autism
Children taken from families into “loving environments” Bettelheim claimed this institutional placement “cured” autistic children
15 Kanner Bettelheim 15
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Au(sm as a symptom of childhood schizophrenia
“Autism” named in 1911 DSM I (1952): Schizophrenic reaction, childhood type
Autism classified as a psychotic reaction in children DSM II (1968): Schizophrenia, childhood type
Autistic, atypical, and withdrawn behavior
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Blaming parents is wrong Now know this is the wrong approach
Research was fraudulent Parents and autistic children form secure attachments Autism is differentiated from schizophrenia
Yet parents still feel blamed By professionals for genetics, own autistic traits By misunderstanding society
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Parental coping is important, however
Families with autistic children and accepting parents have better family and child outcomes
Parents’ anxiety or depression may contribute to children’s behavioral or emotional problems
Overprotective parenting is linked to anxiety in children
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Au(sm as a treatable developmental disorder
Medical and psychological establishment began to view autism as a neurological disorder
ABA-‐based programs have demonstrated autistic children can learn with intensive, structured interventions
19 Rimland Lovaas 19
Au(sm as a spectrum disorder Group of 5 pervasive developmental disorders
“Autism spectrum disorder” (DSM-‐V, May 2013) -‐ a good idea?
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Au(s(c disorder
DSM III (1980): Early infantile autism Restricted criteria, limited to young children DSM III-‐R (1987), IV (1994), and IV-‐R (2000): Autistic disorder
More choices for criteria; no age limit for diagnosis
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“High-‐” and “low-‐func(oning” au(sm Functioning labels are based on IQ testing – a problem:
Autistic people have uneven profiles of intelligence Most tests presume verbal abilities Processing style, sometimes speed, differences General problems: cultural bias, motivation…
Cases in point
Mukhopadhyay
22 22 Tito Mukhopadhyay Sue Rubin Amanda Baggs
PDD-‐NOS: A catch-‐all diagnosis DSM III: Childhood onset pervasive developmental disorder Broad choices for criteria DSM III-‐R: Pervasive developmental disorder – not otherwise specified
Challenges reciprocal social interaction and verbal and nonverbal communication skills
DSM IV, IV-‐R Challenges reciprocal social interaction or verbal and nonverbal communication skills or stereotyped behavior
Atypical autism: late age of onset, atypical or too few symptoms, or all of these
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Asperger’s disorder “Autistic psychopathy” introduced in 1944 Popularized to English-‐speaking world in 1981 Asperger’s paper translated into English in 1991 Officially recognized in 1994
Differentiation from autism critically problematic Essentially based on lack of speech delay
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CDD and ReS’s: Regression rare in au(sm?
Childhood disintegrative disorder (DSM IV, IV-‐R) Apparently normal development,
then loss of skills in 2+ areas
Rett’s disorder (DSM IV, IV-‐R) Loss of specific skills and growth Only known in girls
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Au(sm spectrum disorder?: DSM-‐V
Proposed revision A. Deficits in social communication and interactions (all of the following) 1. Social nonverbal and verbal communication 2. Lack of social reciprocity 3. Peer relationships B. Restricted, repetitive patterns of behavior, interests, activities (2-‐3 symptoms) 1. Stereotyped motor or verbal behaviors, or unusual sensory behaviors 2. Routines 3. Interests C. Symptoms present in early childhood; later social demands may fully reveal them
Proposed autism diagnosis changes anger "Aspies" By LINDSEY TANNER (AP) – Feb 11, 2010
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Associated condi(ons ADHD
Genetic, behavioral overlap with autism spectrum Selective attention, executive functioning challenges core to autism? Self-‐report does not appear to differentiate autism from ADHD
Mental health disabilities (depression, anxiety), caused by Exclusion, victimization Self-‐awareness, social comparisons Biological basis?
Others (Tourette’s, bipolar disorder…)
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Diagnos(c subs(tu(on As autism labels have risen, “mental retardation” and learning
disabilities labels have fallen
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(Dept. of Education; graphs by O’Cameron, 2010)
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Sharper diagnos(c instruments Autism Diagnostic Interview-‐Revised (Rutter et al, 2003) Autism Diagnostic Observation Schedule (Lord et al, 2000) Childhood Autism Rating Scale (Schopler et al, 1980) Aberrant Behavior Checklist (Krug et al, 1979, 1980) Vineland Adaptive Behavior Scales (Sparrow et al, 1984)
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Contested Reali(es Autism as identity Autism as disease
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Combating Autism Act of 2006
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Pro-‐cure movement Views autism as disease to be cured in medical model Separates the autism from the autistic Believes in or aspires toward behavioral “recovery” Alternative biomedical treatments and “cure” Fund-‐ (and fear-‐)raising “awareness” campaigns Organizations often exclude autistic people Predominant focus on children Belief in environmental autism “epidemic” "I am Autism" "Autism Every Day"
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Disability rights movement Social construction of disability Civil rights model – not medical model Full inclusion: “Nothing About Us Without Us” Focus on self-‐determination and self-‐advocacy: building independence, productivity, quality of life
Against personal tragedy narrative
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Neurodiversity movement Autism: natural, continuous with normality Complex, pervasive difference; part of personality
Identity-‐first, non-‐medicalized language Focus on acceptance, against cure and normalization
"Autistics Speak" "No Myths"
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Quality of Life
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Core Domains Indicators
Self-‐Determination Autonomy, Choices, Personal Control, Self-‐Direction, Personal Goals/Values
Social Inclusion Acceptance, Status, Supports, Roles, Work, Community, Volunteer, Residential
Material Well-‐Being Ownership, Security, Food, Shelter, Employment, Socio-‐economic Status
Personal Development Education, Skills, Fulfillment, Competence, Purposeful Activity, Advancement
Emotional Well-‐Being Spirituality, Happiness, Safety, Freedom from Stress, Self-‐Concept, Contentment
Interpersonal Relations Intimacy, Affection, Family, Interactions, Friendships, Support
Rights Privacy, Voting, Access, Due Process, Ownership, Civic Responsibilities
Physical Well-‐Being Health, Nutrition, Recreation, Mobility, Health Care, Leisure, Daily Activities
=
(Shalock, 2000)
Effects of s(gma Autism perceived in moral model (sin)
Autistic behavior elicits anger and victimization Autism perceived in medical model (sickness)
Elicits pity and charity, focus on cure Both challenge mental health and coping
Learned helplessness Pseudoscience
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Moral model Learned helplessness Neurodiversity movement Pro-‐cure movement
Attribution to self for responsibility for solution High Low Attribution to
self for responsibility for problem
High
Low
Human con(nuum The autism spectrum is continuous with normality Social, cognitive profile common, especially in boys Broad Autism Phenotype
Families more likely to have autistic traits Autistic advantage in digital economy?
"It seems that for success in science or art a dash of autism is essential." – Hans Asperger
36 36 Bill Gates 3:25 Temple Grandin Steven Spielberg
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Implica(ons for research Evidence-‐based, compatible with or espousing neurodiversity Accommodations and services
School, work, etc. Speech, physical, occupational therapies
Behavioral interventions Discrete trial training (adult-‐directed) Pivotal response training (child’s interests) Positive behavior support (widespread use) Cognitive behavioral therapy (usually for anxiety – other uses?) Joint attention/symbolic play (child’s lead) Social skills: UCLA PEERS 1:30
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Need to focus on adulthood too Organizational, sensory, psychological, academic, vocational, residential supports
Little attention to this period Research, knowledge Funding, services
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Q & A Questions? (Personal questions welcome) Comments? Suggestions?
For further contact: [email protected]
