parent survey--last chance!

[Guest guest]

Parent Survey: Questions About Your Child's Diagnosis Process

Hello! My name is Zeiger and as many of you know, I am the mother

of a child with autism. Like many of you, I have concerns about the way our

children are evaluated, diagnosed, and treated by the medical community,

especially pediatricians, who see children most often. And like you, my

interest in autism diagnosis and treatment extends beyond concern for only my

child. As an advocate for all children with autistic spectrum disorders, I am

particularly interested in finding ways to improve the methods we currently use

for screening, evaluating, and diagnosing.

I am also a doctoral student in Clinical Psychology at the Indiana University of

Pennsylvania and have decided to focus my dissertation project on examining the

screening and diagnosis barriers for pediatricians. As a preliminary step, I am

conducting a survey of parents of children with autism and pervasive

developmental disorder (PDD) to find out about their experiences with the

screening, evaluation, and diagnosis of their children. I am asking for your

assistance because your collective experience will help to identify barriers to

early diagnosis and assist future children in getting diagnosed earlier. If you

are interested in taking part in this study, please read the Cover Letter below

and follow the directions for completing the survey. Thank you in advance for

your participation.

Cover Letter

Please consider participating in this autism screening and diagnosis research

study. The following information is provided in order to help you make an

informed decision whether or not to participate. If you have any questions

please do not hesitate to ask. You are being asked to participate because you

are a parent or guardian of a child with autism and you subscribe to

<mailto: >.

The purpose of this study is to investigate the role of pediatricians in the

identification of autism in young children. Participation in this study will

require approximately 10 minutes of your time. You will be asked to respond to

13 questions relating to how your child was diagnosed with autism and describing

the role of your pediatrician in the screening, evaluation, and diagnostic

process. If you have more than one child with an autism or PDD diagnosis, please

answer the questions only for the first child you had diagnosed.

There are no known risks or discomforts associated with this research. Your

participation in this study is voluntary. You are free to decide not to

participate in this study. Your completion of the survey questions indicates

your consent to participate in this project. This survey is designed so that

participants will remain anonymous. If you choose to participate, no personally

identifying information will accompany your online response data. Your responses

will be considered only in combination with those from other participants. Once

you send responses online, the data will be aggregated with those of other

participants and will not be able to be retrieved. The information obtained in

the study may be published in scientific journals or presented at scientific

meetings, but your identity will be protected because the data are collected in

an anonymous format.

The results of this study will be made available to all members of this list,

whether they were participants in the study or not, in the spring of 2005.

If you have any questions, please contact the Project Director listed below.

Project Director: Zeiger, M. A.

Position: 3rd-year doctoral student

Campus Address: 222 Uhler Hall

Indiana University of Pennsylvania

Indiana, PA 15705

E-mail: victoria@...

Phone: 724/357-4529

Faculty Sponsor: Krys Kaniasty, Ph.D.

E-mail: kaniasty@...

Phone: 724/357-5999

This project has been approved by the Indiana University of Pennsylvania

Institutional Review Board for the Protection of Human Subjects (Phone:

724/357-7730).

To access the survey, please go to the following address:

http://www.mgleason007.com/autism<http://www.mgleason007.com/autism>

This link will take you to a secure website where you can anonymously complete

the survey online. Survey data will be collected until Monday, November 29,

2004.

Thank you for taking the time to complete this survey. As a parent of a child

with autism myself, I understand how valuable your time is.