1. © 2009 Autism Science Foundation, Inc. All Rights Reserved. Vaccines: Communicating with Unsure Parents Alison Singer Autism Science Foundation CDC National Immunization Conference April 21, 2010

2. Traditional Framework for Communicating Science No data support a causal relationship between vaccines and autism. –Here are the studies Vaccines save lives. Therefore your child needs to be vaccinated. No Longer Enough © 2009 Autism Science Foundation, Inc. All Rights Reserved.

3. New 4-step Framework for Communicating Science: Making the CASE for Vaccines C orroborate: Acknowledge the parents’ concern and find some point on which you can agree. This sets the right tone A bout Me: Describe what you have done to build your knowledge base and expertise S cience: Describe what the science says E xplain/Advise: Give advice to patient, based on the science © 2009 Autism Science Foundation, Inc. All Rights Reserved.

4. New 4-step Framework for Communicating Science: Making the CASE for Vaccines C orroborate: Acknowledge the parents’ concern and find some point on which you can agree. This sets the right tone A bout Me: Describe what you have done to build your knowledge base and expertise S cience: Describe what the science says E xplain/Advise: Give advice to patient, based on the science © 2009 Autism Science Foundation, Inc. All Rights Reserved.

5. Welcome to Autism 101 © 2009 Autism Science Foundation, Inc. All Rights Reserved.

6. Autism Spectrum Disorders Autism Spectrum Disorders (ASDs) are a group of developmental disabilities. –Classic Autism –PDD-NOS –Aspergers Syndrome –Rett Syndrome –Childhood Disintegrative Disorder Impairment in 3 domains –Social (interest in people, joint attention, imaginative play) –Communication (language, speech) –Behavior (repetitive behaviors, tantrums, aggression) © 2009 Autism Science Foundation, Inc. All Rights Reserved.

7. What Causes Autism? We don’t know Genetics: Twin Studies Environment –Maternal Rubella –Maternal Thalidomide –Maternal Valproic Acid –Prenatal Maternal Immune Response Developmental trajectory off course –Due to primary social impairments, individuals with autism do not attend to faces in early childhood. –As a result, they fail to develop expertise in people. This is reflected in face processing impairments and atypical brain activity. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

8. High Heritability of Mental Disorders © 2009 Autism Science Foundation, Inc. All Rights Reserved. Insel, 2009

9. What Causes Autism? We don’t know Genetics: Twin Studies Environment –Maternal Rubella –Maternal Thalidomide –Maternal Valproic Acid –Prenatal Maternal Immune Response Developmental trajectory off course –Due to primary social impairments, individuals with autism do not attend to faces in early childhood. –As a result, they fail to develop expertise in people. This is reflected in face processing impairments and atypical brain activity. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

10. Vaccines and Autism MMR –Andrew Wakefield –1998 Lancet –2010 Retracted –12 studies of MMR Thimerosal –Removed from all but flu vax in 1999 –No reduction in autism prevalence –8 studies of thimerosal Too Many Too Soon –Number of Vaccines vs Number of Immunological Components –Drop in the Ocean © 2009 Autism Science Foundation, Inc. All Rights Reserved.

11. Diagnosis Diagnosis by age 3 and earlier Diagnosis is made based on behavior, parent questionaire No medical test, yet Working on biomarkers related to: –head circumference –eye gaze –fmri looking at learning/language areas in the brain –genetic markers (3-15%) Every child with autism is different, but yet share certain similarities © 2009 Autism Science Foundation, Inc. All Rights Reserved.

12. Red Flags for Autism Does not babble or coo by 12 months Does not gesture (point, wave, grasp) by 12 months Does not respond to name by 12 months Does not say single words by 16 months Does not say two-word phases on his or her own by 24 months (not repeating) Has any loss of any language or social skill at any age © 2009 Autism Science Foundation, Inc. All Rights Reserved.

13. Early Intervention Kids can make meaningful gains in skills 30-50% make enough gains to be mainstreamed by kindergarten Early Intervention programs vary by state IDEA: Individuals with Disabilities Education Act –Individualized Educational Program (IEP) –Free and Appropriate Education (FAPE) –Least Restrictive Environment (LRE) © 2009 Autism Science Foundation, Inc. All Rights Reserved.

14. Treatment: Evidence and Anecdote Applied Behavior Analysis Therapy Speech Therapy Occupational Therapy Physical Therapy Social Skills Training Pharmacological interventions (Risperdal, Abilify) Special schools & School-Based Interventions –TEACCH, ABA, Floortime, Intensive Language Instruction © 2009 Autism Science Foundation, Inc. All Rights Reserved.

15. Other Treatments Music Therapy (AIT) Horseback Riding Therapy Special Diet (Gluten and Casein Free) Vitamin Supplements Secretin Injections Anti-fungal agents Chelation Hyberbaric Oxygen Therapy Holding Therapy Marijuana Snake Oil (yes, actual snake oil) © 2009 Autism Science Foundation, Inc. All Rights Reserved.

16. Simultaneous Treatments © 2009 Autism Science Foundation, Inc. All Rights Reserved. Reproduced with permission of Kennedy Krieger Institute, Baltimore, MD

17. Autism Effects the Entire Family Emotional Devastation/Guilt/Anger –Impact on marriage –Impact on siblings –Impact on grandparents –Parental depression –Tremendous parental stress tried to child’s behavior –Try anything attitude –Why did this happen? –Disdain for Medical Professionals who have little to offer © 2009 Autism Science Foundation, Inc. All Rights Reserved.

18. Autism Research © 2009 Autism Science Foundation, Inc. All Rights Reserved. http://iacc.hhs.gov/summary-advances/2009/index.shtml

19. Autism Science Foundation’s Mission Support autism research by providing funding and other support to scientists and organizations conducting, facilitating, publicizing and disseminating high quality autism research. Support families by reinforcing message that no science (over two dozen studies) indicates a causal link between autism and vaccines Founded by parents and scientists, working together © 2009 Autism Science Foundation, Inc. All Rights Reserved.

20. www.autismsciencefoundation.org Blog/Wordpress Facebook Twitter Linked In You Tube (coming soon) © 2009 Autism Science Foundation, Inc. All Rights Reserved.