IAN Research: Pilot Survey Now Open to Adults with ASD
Date First Published: November 6, 2008
There is very little information about the situation of adults with autism spectrum disorders (ASDs) in the United States. The Interactive Autism Network (IAN) Project hopes to change that. We plan to launch a series of online surveys to begin gathering information that will help researchers and advocates answer crucial questions regarding the lives, experiences, and needs of adults with ASDs. We now have the first in this series of surveys ready for you to take and evaluate.
Adults with ASD Ask, ‘What about Us?’
IAN is the largest online autism research project in the United States. When the project launched in April 2007, only families of a child younger than age 18 with an ASD could participate. Immediately, adults with ASD, as well as their parents and advocates, began to contact the project. What about adults on the spectrum?
Soon after, we began to plan how to include adults with ASD in the IAN Project. We studied adult issues and drafted an initial adult-focused online survey that adults on the spectrum helped to review and critique.
We are now pleased to invite adults with ASD to participate in IAN Research (www.IANresearch.org) by answering this first online survey.
The Purpose of the Surveys
IAN’s mission is to accelerate the pace of autism research. Individuals and families affected by autism answer questionnaires over the Internet at
www.IANresearch.org, from the comfort of home. Researchers apply to IAN to use the resulting data, or to find participants for their local studies. The IAN Community (
www.IANcommunity.org), meanwhile, provides evidence-based basic information on ASDs, articles by leading researchers in the field, and reports on IAN’s latest findings.
Information gathered through IAN may help answer crucial questions about adults with ASD: Are adults with ASD satisfied with their lives? What are their living situations like? Are they surviving financially, succeeding in the workplace, content with their relationships? Do they have access to health care? Are they using any treatments, and are these helpful? These are just a few of the questions researchers hope to explore.
Who Can Participate?
People 18 and older living in the United States who have
ever been professionally diagnosed with an ASD can participate in the study. If they are independent adults, they can consent to participate in research for themselves and will receive an “independent adult” version of the survey. If they are under guardianship or otherwise have a legally authorized representative (LAR), then the LAR must consent for them and will receive a LAR version of the survey. When LARs answer the survey, they are encouraged to involve the adult with ASD in completing the survey to the greatest extent possible.
For the purposes of this study, the affected adult must have been professionally diagnosed with one of the following:
- Autism Spectrum Disorder (ASD)
- Autism
- Asperger’s Syndrome
- Autistic Disorder
- Pervasive Developmental Disorder (PDD)
- Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
- Childhood Disintegrative Disorder (CDD)
Remember, the adult must be living in the United States, and must be age 18 or older.
Your Feedback Is Appreciated
This is our first survey for adults, and we welcome your feedback. We will update and improve the survey as time goes on, based in large part on the input of adults with ASD and their parents. We do not plan to promote the survey via the media on a national level until spring 2009. We hope to have an even better survey by then, based on your valuable input.
To share your thoughts, please contact us at researchteam@kennedykrieger.org or (866) 348-3440.
Thank you for the time and energy you take to complete the survey,
and for sharing your feedback.
