Autism and Culture The Effect on Epidemiology and Diagnosis at Home and Abroad. Roy R. Grinker, Ph.D.

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1 Department of Anthropology The George Washington University Washington D.C. 1 International awareness Knowledge of the characteristics, prevalence and phenotypes of autism spectrum disorders has increased Autism societies exist in more than 100 different countries Scientific research on ASD is underway in Taiwan, India, several Middle Eastern countries, Mexico, Venezuela, and a host of other nations 2 Why the body of research is expected to grow Number of child mental health professionals in non-western countries is rising Recent large-scale collaborations between UNICEF, WHO, the World Bank, and universities have led to improved recognition of ASD in the developing world (Lancet, 2007) 3 The screen versions of these slides have full details of copyright and acknowledgements 1

2 Reductions in child mortality in Bangladesh & Pakistan (deaths to children <5 per 1,000 live births) Source: UNICEF State of the World s Children (1993 & 2003 editions) Bangladesh Pakistan Autism around the world A resolution on World Autism Awareness Day (document A/C.3/62/L.22) would have the Assembly designate 2 April as World Autism Awareness Day, to be observed every year beginning in 2008; It would also encourage Member States t to take measures to raise awareness about children with autism throughout society United Nations, Sixty-second General Assembly Third Committee 34th Meeting (PM) 5 Autism advocacy societies, private and public worldwide (in blue) 6 The screen versions of these slides have full details of copyright and acknowledgements 2

3 7 Autism prevalence around the world ( ) 8 9 The screen versions of these slides have full details of copyright and acknowledgements 3

4 Autism and culture Forthcoming epidemiological studies: Korea (Grinker, Kim, Koh, Leventhal, and Fombonne) Venezuela (Montiel-Nava and Peña) Why study culture? 10 Cultural factors Socioeconomic status/class Rural/urban: rural children received autism diagnosis 5 months later than urban children Race and age of diagnosis i (David Mandell, U.S.A.): Near-poor children received a diagnosis approx. 1 year later than those whose families had an income >100% above poverty level (Mandell, Novak and Zubritsky, 2005) 11 WHO schizophrenia studies First large scale effort to explore the role of social organization and culture in influencing the outcomes of a mental illness People with schizophrenia in developing countries do better over time than those in industrialized countries 12 The screen versions of these slides have full details of copyright and acknowledgements 4

5 Learning from schizophrenia studies: prognosis In Madras, India, individuals with schizophrenia have had surprising success finding spouses We need similar information about ASD to know if certain cultural conditions can help improve social and communication skills 13 Developmental disorders and culture Culture refers to the system of meanings human beings confer upon their world Developmental disorders are products of the interplay between biological, psychological, and cultural phenomena Illness is inextricably related to economics, kinship, religion, and other social factors 14 DSM I (1952) 000-x28 schizophrenic reaction, childhood type Psychotic reactions in children, manifesting primarily autism, will be classified here 15 The screen versions of these slides have full details of copyright and acknowledgements 5

6 DSM II (1968) [autism was not mentioned; the word appears only under the following category] schizophrenia, childhood type the condition may be manifested by autistic,, atypical and withdrawn behavior; failure to develop identity separate from the mother's mental retardation, which should also be diagnosed 16 Adoption of DSM and ICD Standardization of diagnoses Major exception, France: Classification Francaise des Troubles Mentaux de l Enfant et de l Adolescent (CFTMEA) 17 A cross cultural comparison: USA and France Classification Etiology American Psychiatric Association removed autism from psychosis category in 1980 French psychiatrists removed autism from psychosis category in 2004 French health professionals generally retain more restricted concept of autism French health professionals generally view autism as a problem with mother-child relationship Only a few psychiatric centers in France with expertise on autism Guided largely by psychoanalytic thought which holds that autism is a disorder of object relations Treatment Treatment emphasizes play therapy and interactive techniques Clinical trial in Lille, France on controversial packing therapy 18 The screen versions of these slides have full details of copyright and acknowledgements 6

7 Importance of a meaningful diagnostic term Clinicians will not make or record a diagnosis unless the diagnostic term is meaningful and in use In India, clinicians call autism paagol, the Hindi word for madness (Daley, 2003) Navajo Indians tend to classify autism as perpetual childhood (Conners and Donnellan, 1995) In rural South Korea, the term brain disorder is used for children with traumatic brain injury, autism, epilepsy, speech and language disorders, Down syndrome, and other genetic disorders 19 Social changes Birth of child psychiatry (1950s) Deinstitutionalization (1970s) Rise of advocacy (1990s) Disability rights and the IDEA (1991) Decline of psychoanalysis (1990s) 20 Diagnostic net widens Recognition that autism affects all classes and races 21 The screen versions of these slides have full details of copyright and acknowledgements 7

8 22 23 Autism Spectrum Disorders (ASD) Pervasive Developmental Disorders (PDD) PDD = an umbrella category Autism Atypical autism (PDD-NOS) Asperger s Disorder Childhood Disintegrative Disorder Rett syndrome 24 The screen versions of these slides have full details of copyright and acknowledgements 8

9 Heather America s Next Top Model contestant; Bravo TV (2007) Where are the adults with autism? Matson, JL et al., 2007; The validity of the autism spectrum disorders-diagnosis for intellectually disabled adults, Res Dev Disabil, November 2 Approximately 50% of intellectually disabled adults have previously undiagnosed ASD (n=307) 27 The screen versions of these slides have full details of copyright and acknowledgements 9

10 Diagnostic net widens (2) Diagnostic substitution (Coo et al., 2007: 51.9% of increase between 1996 and 2004 attributable to special education code switching (British Columbia) Childhood schizophrenia Genetic disorders Newer phenotypes 28 Diagnostic net widens (3) Age of diagnosis Earlier Later 29 Prevalence of autism among children born 1989, Minnesota Prevalence increased with age In the same cohort, prevalence rose every year up until age in 10,000 at age 6 21 in 10,000 at age 9 33 in 10,000 at age The screen versions of these slides have full details of copyright and acknowledgements 10

11 Autism and the IDEA First introduced during the school year After 8 years, increases of several thousand percent in many states National average: 544% Alabama: 1000% Kentucky: 2000% 31 Number of children with autism Served under IDEA, Part B, to , 6-21 years 21 year olds Number of 6-120, ,000 80,000 60,000 40,000 20, (n=49) (n=51) (n=52) (n=52) (n=52) (n=52) (n=52) (n=52) (n=52) (n=52) State DOE reporting of autism eligibility mandated in 1992 Source: U.S. Department of Education, Office of Special Education Programs, Data Analysis System (DANS) 32 Traumatic brain injury and IDEA Traumatic brain injury first introduced during the school year After 8 years, increases of several thousand percent in most states 33 The screen versions of these slides have full details of copyright and acknowledgements 11

12 Distribution of birth dates of regional center eligible persons with autism Fig of enrolled with autism Number o persons w Year of birth (From Changes in the population of persons with autism and pervasive developmental disorders in California s developmental services system; 1987 through 1998 ) 34 Age of persons with autism receiving services in the regional centers in 1995 (California) ersons Number of pe Age 35 Challenges to ASD surveillance Estimates may appear lower in a country with Little awareness Few services Lack of research studies especially of administrative prevalence Estimates may appear higher in a country with Greater awareness among parents, educators, clinicians Access to services Or when the use of autism as a diagnostic term is mandated 36 The screen versions of these slides have full details of copyright and acknowledgements 12

13 Prevalence and access to services Population Population Services Services Same prevalence Low access to services High access to services 37 ADDM network: total prevalence of ASDs per 1,000 Centers for Disease Control and Prevention (CDC); Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002, MMWR SS 2007; 56 (SS-1) 38 Somalis in Minnesota 39 The screen versions of these slides have full details of copyright and acknowledgements 13

14 Minnesota dept. of health, March 2009 After closer scrutiny of the data, it was determined that the statistics cited were not actually estimates of population ASD prevalence - among Somali children compared with non-somali children living in Minneapolis; Instead, they represented program participation rates of a selected group of children between the ages of 3-4, who attended MPS ECSE programs and were eligible to receive ASD special education services; The fact that a child is participating in an ASD early childhood program is an indicator of educational need, but that child may or may not have a medically diagnosed ASD 40 Disease or disability? Ontology Biomedical explanations Toxins Allergies Vaccines Ultrasounds MSG Mercury/Thimerosal 41 Disease or disability? (2) Autism as disease Autism as illness Autism as disability 42 The screen versions of these slides have full details of copyright and acknowledgements 14

15 Korea Chap ae Aechak changae (Reactive attachment disorder) Aejŏng kyŏlpip ( lack of love ) Genes vs. environment Korea has been undergoing dramatic social change 43 Language and diagnosis Samoan children learn certain forms of language much later than one would expect them to, not because they are developmentally delayed but because they are restricted from doing so In developing screening tools, items can be tailored to language impairments in particular languages Pronomial reversal in Korea People on the autism spectrum in Korea don t use language to distinguish social rank 44 Marathon (South Korea) 45 The screen versions of these slides have full details of copyright and acknowledgements 15

16 46 47 Marathon (South Korea) (2) 48 The screen versions of these slides have full details of copyright and acknowledgements 16

17 Milal school (Seoul, South Korea) Compromise: all windows should face the interior 49 India Raising a child is an act of resistance Doctors versus parents People are beginning to think about autism much more positively I heard that the saint, Sri Ramakrishna Paramahansa (b d. 1886), was autistic 50 Autism rights The autism rights movement by Andrew Solomon (Published May 25, 2008 in New York Magazine) A new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability Ari Ne eman eman, Autism Self-Advocacy Network 51 The screen versions of these slides have full details of copyright and acknowledgements 17

18 Neurodiversity We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived; Grieve if you must for your own lost dreams; But don t mourn for us; We are alive; We are real; And we re here waiting for you Jim Sinclair (1993) The screen versions of these slides have full details of copyright and acknowledgements 18