What is the purpose of this study?

The ADS is an extension of a longitudinal study of children with autism and children with developmental delay without autism. Children in the ADS study have previously participated in the project at ages 3-4, 6, and 9 years of age. For the current phase of the project, children and their parents will visit the UW between 13-15 years of age. The goal of the original study (the Early Development Study) was to identify early behavioral and neuropsychological aspects of autism. The new phase of this study will examine factors associated with the development of associated psychological symptoms and seizures in young adolescents with autism.

How can I participate? What are the criteria?

Your family can participate if:

• Your child is now age 13-15 and previously participated in The Early Development Study at ages 3-4, 6, and/or 9

What does participation in the study mean?

Participation in the study begins with a phone call to provide you with additional details about the ADS, and to determine whether your family is interested in becoming involved in the current phase of the project. If you do indicate interest in participating, a research assistant will work with you to plan a phone call with a clinician and a visit to the UW Autism Center. In addition, a packet containing questionnaires will be sent to you.

What is the time commitment for participation in the study?

If you choose to participate in this study, you will be asked to complete a number of questionnaires, respond to a number of questions over the phone, and participate in a visit at the UW Autism Center. The questionnaires will take approximately 2 hours to complete, the phone call lasts approximately 1 hour, and we will ask that you schedule 1.5 hours for your visit to the UW Autism Center.

What will my family get out of the study?

By participating in the current phase of the ASD project, families will receive a written report documenting their child’s development and progress since the previous time-point. The written evaluations can also be used for educational purposes. In addition, experienced clinicians will be available to help answer questions regarding issues that arise during adolescence within the context of autism and developmental delay. Families will also receive reimbursement for parking and compensation ($35) for their time.

What are the risks to participating in this study and what safeguards are in place to minimize any risks?

This study is approved by a human subjects committee at the University of Washington and all efforts are made to minimize any potential risks. There are no known psychological or physical risks associated with any of the procedures. Clinicians working with families in the ADS have extensive experience and expertise in working with families with children with autism and will be available to answer questions and provide additional referrals if necessary.

Who are the investigators involved in this project?

The members of the research team involved in this project are:
Annette Estes, Ph.D.
Bryan King, M.D.
Karen Burner, B.S.
Lauren Elder, B.S.
Vanessa Hus, M.S.
Erin Kipple, B.A.
Vanessa Rivera, B.A.
Lindsey Sterling, M.S.

Whom should I contact to get involved?

To learn more about any of our studies, please contact our Project Scheduler at our toll-free number: 1-800-994-9701

University of Washington
Adolescent Development Study
Box 357920, Seattle, WA 98195
phone: 1-800-994-9701
email: ddrinfo@u.washington.edu

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