© 2009 Autism Science Foundation, Inc. All Rights Reserved. Supporting Immunizing Clinicians: Talking to Parents Alison Singer Autism Science Foundation.

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© 2009 Autism Science Foundation, Inc. All Rights Reserved. Supporting Immunizing Clinicians: Talking to Parents Alison Singer Autism Science Foundation National Immunization Conference March 28, 2011

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.

What is autism? © 2009 Autism Science Foundation, Inc. All Rights Reserved. social language behavior

What exactly is Autism? Sleep Disturbances Anxiety ADHD Symptoms Asperger’s Syndrome Depression Self-injurious Behavior Compulsive & Repetitive Behavior Sensory Integration Difficulties Cognitive Impairment Aggression Social Anxiety Epilepsy Severe Functional Impairment Eric London 09

What has happened since last NIC? Lancet retracts Andrew Wakefield’s original paper Andrew Wakefield stripped of his medical license Andrew Wakefield’s original report deemed “an elaborate fraud” More studies fail to show link Kids getting vaccine preventable diseases Vaccine Court denies all claims in the Autism Omnibus Hearings –“This case is not a close case. The overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories”. –Plaintiffs were “misled by physicians who are guilty, in my view, of gross medical misjudgment” –“To conclude that Colten's condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll's White Queen and be able to believe six impossible things before breakfast.” © 2009 Autism Science Foundation, Inc. All Rights Reserved.

And yet…. 18% of Americans say vaccines cause autism 30% of Americans aren’t sure Harris Interactive/Healthday Poll, Jan © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Autism Speaks Dr. Geri Dawson, Autism Speaks: “There may be a subset of children who are genetically susceptible to autism as a result of vaccines” –What subset? –Everyone thinks their child is in the subset –Puts children directly in harms way © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Oprah’s last year

Dr. Oz Picks Up the Slack © 2009 Autism Science Foundation, Inc. All Rights Reserved. “Fine to delay the schedule” “ We don’t know for sure” “Two sides to this story”

Dr. Oz or American Idol? © 2009 Autism Science Foundation, Inc. All Rights Reserved.

Newspaper Coverage © 2009 Autism Science Foundation, Inc. All Rights Reserved. “You’d expect better from a playmate!” “We’re not all public menaces”

CASE Framework for Communicating Science: C orroborate: Acknowledge the parents’ concern and find some point on which you can agree. Set the tone for a respectful, successful talk. 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 your advice to patient, based on the science © 2009 Autism Science Foundation, Inc. All Rights Reserved.

I heard on tv that vaccines cause autism C orroborate: There’s certainly been a lot of coverage on television about vaccines and autism so I can understand why you have questions A bout Me: I always want to make sure I’m up to date on the latest information so that I can do what’s best for my patients, so I’ve researched this thoroughly. In fact, I just returned from a professional conference… S cience:The scientific evidence does not support a causal link. The CDC, the AAP, the NIH, the IOM (etc) all reviewed the data and all reached the same conclusion. Dozens of studies have been done. None show a link. In fact, the latest autism science indicates… E xplain/Advise: Vaccines are critical to maintaining health and wellbeing. They prevent diseases that cause real harm. Choosing not to vaccinate does not protect children for autism, but does leave them open to diseases. My children are fully vaccinated. © 2009 Autism Science Foundation, Inc. All Rights Reserved.

CASE Framework for Communicating Science: 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.

Talk To Families About Autism Research! 15% of autism attributable to specific genetic causes –Genetically-defined autisms Imaging Studies and Genetics converging on neural synapses –“Synaptopathy” –Formation and Function Synaptic Protein Discoveries Leads to Novel Therapeutics –Animal Models of Autism –Clinical Trials in Humans for Fragile X Diagnosis at Age 2 months is “sticky” © 2009 Autism Science Foundation, Inc. All Rights Reserved.

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.

Autism Research © 2009 Autism Science Foundation, Inc. All Rights Reserved.

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.

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