Two-Year Anniversary: IAN Launches Adult with ASD Surveys
Date First Published: April 2, 2009
Date Updated: November 19, 2009
On the occasion of the Interactive Autism Network’s second anniversary, we are pleased to announce the launch of the IAN Adult with ASD Questionnaire.
IAN, the nation’s largest online autism research project, began enrolling children with autism spectrum disorders (ASDs) in April of 2007. Right away, adults with ASD, contacted the project to ask: "What about adults? There is so much we have to say! When can we participate?" Parents and guardians of adults were equally insistent that the voices of adults and their families be heard.
In response, we immediately began to develop online adult questionnaires. We first looked at what was known so far about adults with ASD in the United States, which is very limited. We also looked at similar surveys that had been conducted in the U.K. We next brought in adults on the spectrum, and parents of adults on the spectrum, for their input and feedback. In November of 2008, we launched a pilot survey, garnered additional feedback from those who took it, and continued to meet with members of the community to further hone the survey. On April 2, 2009 – two years to the day after our initial IAN launch – the adult surveys "2.0" are ready!
The Purpose of the Surveys
IAN’s mission is to accelerate the pace of autism research, as well as to supply advocates and policy makers with the data they need to fight for change. Individuals and families affected by autism answer questionnaires over the Internet at IAN Research, from the comfort of home. Researchers apply to IAN to use the resulting data, or to find participants for their local studies. Preliminary research findings are shared via Research Reports on the IAN Community website, and key statistics, by state and for the entire U.S., are generated and shared with the public on IAN StateStats.
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? Are they coping with any medical or mental health issues, and do they have access to health care? 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.
What about parents, siblings, or other supporters of independent adults, that is, adults who are not under guardianship? They can explain the project; help the adult with ASD register for the project; and make clear what each question is about to the same degree they might assist with any other web-based task, such as online banking or an online purchase. The decision to participate, however, remains with the adult with ASD. If a person with ASD who is not under guardianship says "I don't want to do this," then no is the answer.
For the purposes of this study, the affected adult must have been professionally diagnosed with one of the following:
- Autism Spectrum Disorder (ASD)
- Asperger’s Syndrome
- Autistic Disorder
- Pervasive Developmental Disorder (PDD)
- Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
- Childhood Disintegrative Disorder (CDD)
We hope all our readers, and especially adults with ASD and their parents, grandparents, siblings, and friends, will spread the word about this important survey. It is past time there was more information about the situation of adults with ASD in the United States.
Our Thanks to All Who Helped
We would like to convey our thanks to all the adults with ASD, and the parents of adults with ASD, who volunteered their time and shared their insights in order to improve the survey, whether by e-mail, via comments made while taking the online pilot survey, or through face-to-face meetings with our staff. A special thanks to the adults with ASD who provided their input through the Towson University Center for Adults with ASD. Thank you!
If you have any questions about the Adult with ASD surveys, or comments or feedback about the surveys, please contact us.
To register and begin the surveys, visit IAN Research.
To take a look at what questions to expect on the survey, see our IAN Research Questions.