Aide à l autonomie et parcours de vie

Transcription

1 13 February 2012 Christine Fountain Columbia University, USA Aide à l autonomie et parcours de vie The Heterogeneity of Autism as a Longitudinal Process Funded by the NIH Pioneer Award. In collabora*on with Peter Bearman, Ka- Yuet Liu, Alix Winter, Keely Cheslack- Postava, Soumya Mazumdar & Kinga Makovi. hhp://

2 In the US Autism has risen dramatically. Autism Prevalence

3 The Understanding Autism Project at Columbia University is trying to understand what is behind this increase. Main Explanations:! Genetics! Diagnostic Change! Individual Risk Factors! Environment

4 Understanding the dynamics of a rare but growing condition requires unique data. Every child born in California, 1992 to Parental characteristics, prenatal conditions & residence at birth. Reconstruction of sibling groups. ~8 million births; 500,000 per year Addresses at birth (jihered)

5 Understanding the dynamics of a rare but growing condition requires unique data. Every child born in California, 1992 to Parental characteristics, prenatal conditions & residence at birth. Reconstruction of sibling groups. ~8 million births; 500,000 per year Probabilistically match to : all persons in California with developmental disorders, Yearly evaluations on diagnostic status and severity. ~ 40,000 autism Addresses at birth (jihered) Au*sm

6 Understanding the dynamics of a rare but growing condition requires unique data. Every child born in California, 1992 to Parental characteristics, prenatal conditions & residence at birth. Reconstruction of sibling groups. ~8 million births; 500,000 per year Probabilistically match to : all persons in California with developmental disorders, Yearly evaluations on diagnostic status and severity. ~ 40,000 autism Embedded in: neighborhoods with sociodemographic characteristics and local pollutant levels. Property values Addresses at birth (jihered) Au*sm

7 Understanding the dynamics of a rare but growing condition requires unique data. Every child born in California, 1992 to Parental characteristics, prenatal conditions & residence at birth. Reconstruction of sibling groups. ~6 million births; 500,000 per year Probabilistically match to : all persons in California with developmental disorders, Yearly evaluations on diagnostic status and severity. ~ 40,000 autism Embedded in: neighborhoods with socio-demographic characteristics and local pollutant levels. Distance to: each other, malls, parks, pediatricians, schools, autism advocacy organizations, etc. Property values Addresses at birth (jihered) Au*sm Malls Local parks Pediatricians Roads Elementary schools Au*sm advocacy organiza*ons

8 Genetics: Genes matter, but heritability has been greatly overestimated. Casewise concordance rates in twins, full, and half siblings 60% 50% 40% 30% 37,7% 47,5% All Same Sex Opposite Sex 20% 10% 0% 18,4% 12,2% 9,7% 7,2% 3,4% 5,9% 1,1% All SS OS All SS OS All SS OS Twins Full Siblings Half Siblings

9 Diagnostic Change: Substitution (for MR) accounts for ¼ of recent cases in CA. California Autism caseload, Unexplained by MR 24% explained Thru the mental retarda*on pathway Source: King & Bearman. (2009). Int. J. Epidemiol.

10 Diagnostic Change: We observe expansion on the high-functioning end of the spectrum. Cohort effects in au*sm diagnosis in California from 1994 to 2005 by child s func*oning at the *me of diagnosis Odds raqo High func*oning Low func*oning Birth cohort

11 Risk Factors: Children born to older parents have higher risk. Increased odds for every additional 2 years of age at birth, by birth cohort. Risk Associated with Two AddiQonal Parental Years 1,05 Maternal Age 1,04 Paternal Age 1,03 1,02 1,01 1 0,99 0,

12 Risk Factors: Very short interpregnancy intervals increase the risk. Odds ra*os for au*sm for second- born singleton full sibling births 4 Odds raqo and 95% CI 2 1 0,5 0, Interpregnancy interval (months)

13 Geographic Environment: Autism cases are not uniformly spread across the population of California Cluster area has 4x the risk of the rest of CA. Source: Mazumdar S, King M, Liu K, Zerubavel N, and Bearman P The spa*al structure of au*sm in California, Health & Place 16:

14 The Social Environment: Probability of autism diagnosis decreases with physical distance from the nearest child with autism

15 Political Environment: Effect of Immigration Policy on Autism Enrollment for Children of Hispanic Immigrants Comparisons between children turning age 3 one year before and ager policy event. Odds RaQo 1,5 1,4 1,3 1,2 1,1 1,0 0,9 0,8 0,7 0,6 0,5 Children of Hispanic immigrants Children of had Hispanic turning immigrants 3 during 187 turning had 3 9/11 had no effect 16% lower odds of au*sm ager than Patriot they Act would has 17% have lower if they odds had of au*sm turned three a year ager than repeal. they would have before. 0,84 Prop 187: AnQ- immigrant legislaqon 1,01 0,83 9/11 Patriot Act

16 The increased prevalence of autism has multiple, interrelated causes.! Pay attention to time and space!! We must consider the social dimensions including political, socioeconomic, institutional, and community factors! alongside the genetic, biological, and environmental causes.

17 What happens to children with autism after diagnosis?! Autism is a lifelong condition.! Symptom trajectories unfold over time, showing: Significant heterogeneity in the long-term outcomes of children with autism Heterogeneity in developmental pathways! Goals: Assemble trajectories of three symptom dimensions for children with autism Find the most typical trajectories for children with autism Understand the correlates of trajectories

18 Trajectories are constructed from annual DDS evaluations.! Each child is evaluated by the DDS annually.! Combined scores from the 5 items that measure social interaction and the 3 items that measure communication into two indices of social and communication functioning! Assembled annual scores into longitudinal sequences for 6,975 children ages 2-14 with 4 evaluations! Group-Based Latent Trajectory Modeling finds patterns in the population of trajectories. Hypothetical symptom sequence: Communication Social

19 Six Typical Communication Trajectories Functioning Age High (12.7%) Bloomers (7.5%) Med-High (25.8%) Medium (24.5%) Low-Med (18.4%) Low (11.1%)

20 Six Typical Social Trajectories Functioning Age High (7.0%) Bloomers (10.7%) Med-High (19.6%) Medium (29.7%) Low-Med (24.5%) Low (8.4%)

21 Six Typical Repetitive Behavior Trajectories 5 Never (21.4%) Functioning Improving (8.1%) Declining (7.1%) When Stressed (28.0%) Daily (27.6%) Age Usually (7.8%)

22 Social and Communication Trajectories are associated.but not perfectly. Low Low-Med Medium Bloomers Med-High High 1% 4% 1% 4% 3% 2% 9% 5% 18% 16% 18% 9% 24% Social Group 42% 29% 42% 6% 38% 24% 33% 29% 15% 33% 35% 17% 33% 15% 29% 22% 20% 12% 6% 2% 1% 4% 1% Low Low-Med Medium Bloomers Med-High High Communication Group

23 Communication: How do Bloomers differ from other children with autism? Mom College Grad Low-Functioning High-Functioning Mom < High School Mom Non-Hisp White Mom Foreign-Born Intellectual Disability Male

24 Social: How do Bloomers differ from other children with autism? Low-Functioning High-Functioning Mom Non-Hisp White Mom Foreign-Born Intellectual Disability Male

25 Children with autism follow diverse developmental paths.! Most children improve over time, albeit at different paces and ages.! Improvement on social and communication dimensions can occur independently.! We find a subset of children who bloom. Bloomers are of relatively high SES and are likely to be native-born non-hispanic whites without ID.! More research needed to understand if modifiable risk factors or treatments predict blooming

26 Articles from which this talk was drawn: Cheslack-Postava, Keely, Kayuet Liu, and Peter S. Bearman Closely Spaced Pregnancies Are Associated With Increased Odds of Autism in California Sibling Births. Pediatrics Fountain, Christine, Alix S. Winter & Peter Bearman Six Developmental Trajectories Characterize Children with Autism. Forthcoming at Pediatrics. Fountain, Christine, and Peter S. Bearman Risk as Social Context: Immigration Policy and Autism in California. Sociological Forum 26. Fountain, Christine, Marissa D King, and Peter S Bearman Age of diagnosis for autism: individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health. Keyes, Katherine M., Ezra Susser, Keely Cheslack-Postava, Christine Fountain, Ka-Yuet Liu & Peter S. Bearman Cohort effects explain the increase in autism diagnosis among children born from 1992 to 2003 in California. Forthcoming at International Journal of Epidemiology. King, Marissa D, and Peter S Bearman Diagnostic change and the increased prevalence of autism. Int. J. Epidemiol. 38: King, Marissa D, Christine Fountain, Diana Dakhlallah, and Peter S Bearman Estimated Autism Risk and Older Reproductive Age. Am J Public Health 99: Liu, Ka-Yuet, Noam Zerubavel, and Peter S. Bearman Social Demographic Change and Autism. Demography 47: Liu, Ka-Yuet, Marissa D King, and Peter S Bearman Social Influence and the Autism Epidemic. American Journal of Sociology 115: Mazumdar, Soumya, Marissa D King, Ka-Yuet Liu, Noam Zerubavel, and Peter S Bearman The spatial structure of autism in California, Health & Place 16: