Early Determinants of Autism Study

Frequently Asked Questions

What happens if I move or change my address during the study?
If you move at any time during the study, please contact the Autism Study staff.

Can I get results from the study?
A major goal of this survey is to determine how many members of the Child Health and Development Studies and their children have autism spectrum disorder and other developmental challenges. We hope this survey can help us discover if there is a relationship between exposures during pregnancy and development of autism spectrum disorder and other neurodevelopmental symptoms in two generations.

We will share study results with you through our websites, newsletters and publications in scientific journals. We are happy to provide you with final study reports or reprints of journal articles when they are completed; please request copies from the study director, . As the findings of the study are published, the CHDS and Autism websites will be updated to include summaries of these results.

How can I find out more information?
If you are interested in more information about the history of the CHDS please see the CHDS website. If you are looking for more information about autism and autism research, please see our list of resources here.

How can I talk to a CHDS staff member about my questions regarding the study?
The staff of the Early Determinants of Autism Study will be happy to answer any and all of your questions about the study. Please contact Eileen Johnson or Lauren Zimmermann at 510-649-6390 or send an email to .

What else can I do to become involved in the fight against autism?
There are a lot of ways to become more involved with autism research and advocacy. We've provided a list of organizations that are involved in the fight against autism—including awareness campaigns, influencing policy, engaging in human and environmental research and serving people who have been diagnosed with autism. See our list here.

Early Determinants of Autism Study

Study Participation

What will I be asked to do?
You will be asked to visit a website where you can fill out a survey electronically. You can also fill out a paper version of the survey if you prefer. If you would like a paper copy of the survey, please contact the study staff at 510-649-6390 or .

Tell me more about the survey
The autism study online survey is managed by the Survey Research Group, a Public Health Institute organization. The Survey Research Group uses software that allows for confidential data collection. If you choose to complete the survey online you will be asked to enter your access code, update your contact information, and give consent to participate.

In order to maintain your confidentiality, the health information you provide will be recorded with a numeric ID only. In the recruitment email/letter you will be given an access code that you can use to login to the online survey. The survey will take less than 10 minutes to complete. If you choose to complete the survey by mail you will receive a consent form and a form to update your contact information. Please return the survey and contact forms in the self-addressed, stamped envelopes we provide. Once we receive a response to the survey you will be added to a raffle drawing for one of six $50 Starbucks or Amazon gift cards to be held at the conclusion of the study. The date of the drawing will be January 5, 2015.

I lost my letter. How can I get my access code?
Please contact the study staff at 50-649-6390 or and we will give you your access code over the phone or send it to you in an email.

Early Determinants of Autism Study

What is Autism?

• Mayo Clinic definition of Autism Spectrum Disorder
• Autism Fact Sheet
• TED talk with Associate Professor of Pediatrics and Medicine at Columbia University Wendy Chung: Autism - What We Know (And What We Don't Know Yet)
• What do scientists mean when they talk about 'environmental factors' that cause autism?
• Environmental factors as important as genes in understanding autism

Organizations Involved in the Fight Against Autism

Advocacy

• Association for Science in Autism Treatment
  A group of parents and professionals concerned about the care and treatment of individuals with autism. ASAT is dedicated to disseminating accurate, scientifically valid information about autism and its treatment options.
• Autism Network International
  Autistic-run self-help and advocacy organization that provides a forum for autistic people to share information, peer support, and tips for coping and problem-solving.
• MAAP Services for Autism, Asperger Syndrome, and PDD
  Provides information, advice, and networking to families of more advanced individuals affected by the autism spectrum, including autism, Asperger syndrome, and pervasive developmental disorder. Publishes a quarterly newsletter.
• Autism National Committee
  Works to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.
• Autism Society of America
  Promotes lifelong access and opportunities for persons within the autism spectrum and their families through advocacy, public awareness, education, and research programs.
• Birth Defect Research for Children, Inc.
  Non-profit organization that offers parents and expectant parents information about specific birth defects, their causes and treatments, support group referrals, and parent matching services. Provides information about environmental exposures that may be associated with birth defects. Sponsors the National Birth Defect Registry, a research project that collects data on birth defects and prenatal/lpreconceptual exposures of mothers and fathers.

Research

• Autism Science Foundation
  Provides funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
• Autism Speaks
  Nonprofit organization dedicated to finding the causes, prevention, effective treatment and, ultimately, a cure for autism spectrum disorders. It provides research grants, fellowships and sponsors scientific conferences.
• Autism Research Institute
  Conducts research and disseminates research-based information on the cause, prevention, and treatment of autism and related disorders.
• Escher Family Foundation
  Six years ago Jill Escher and her husband founded a small family fund that first financed school recreational activities for autistic children, and later began to fund research into the causes of autism. The foundation has funded the Early Determinants of Autism study.