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The IAN Adult with ASD Questionnaire: Striving to Better Serve the Growing Adult ASD Community

Interactive Autism Network at Kennedy Krieger Institute
Date Published: 
February 6, 2017

There are now more adults diagnosed with autism spectrum disorder (ASD) than ever, yet there is little research on the needs, priorities, and experiences of adults. To better serve adults with ASD and their families, it is critical to understand the experiences and burdens that both independent and dependent adults with ASD face. Do adults with ASD experience discrimination? Do they have adequate access to healthcare? How do they describe their overall quality of life and day-to-day needs?

From 2008 to 2012, IAN Research families completed IAN Adult with ASD Questionnaires and we learned a lot from you (see, for example, our journal article that discusses the findings). The new IAN Adult with ASD Questionnaires build on the foundation of the original questionnaires, address gaps in knowledge, and focus on areas that adults and their families felt were of the highest concern.

Who is Eligible to Participate in the Adult with ASD Questionnaire?

IAN is doing our part to better understand the variety of issues that affect adults with ASD by going straight to the source: you!

If you are an adult with ASD, or are the legal guardian of a dependent adult with ASD, please take a moment to complete IAN's new Adult with ASD Questionnaire (Principal Investigator: Dr. Paul H. Lipkin; JHM-IRB NA_00002750). There are two versions of the Adult with ASD Questionnaire: the Independent Adult with ASD version for independent adults with ASD to complete about themselves and the  Dependent Adult with ASD for legal guardians to complete about their dependent adult with ASD.You should be able to complete the questionnaire in less than 20 minutes.

IAN participants who completed the original IAN Adult with ASD Questionnaires (from 2008-2012) are welcome to complete the new, expanded version.

How do I Complete the Survey?

Current IAN Research participants may log into their IAN Research account at https://www.ianresearch.org/ to find the Adult with ASD Questionnaire (either self-report or proxy-report) listed under their name, or the name of their dependent adult, in the IAN Research Family Profile.

Not yet enrolled in IAN Research? Please visit https://www.ianresearch.org/ to join IAN and be eligible to complete the questionnaire. Once you have joined IAN, the Adult with ASD Questionnaire (either self-report or guardian-report) will appear under your name or the name of your dependent adult in your IAN Research Family Profile.

Our Sincere Thanks

Thank you to all who participate in IAN Research! Sharing your thoughts and experiences with us helps to advance ASD research and improve resources for individuals with ASD and their families.

IAN Research will be holding a “thank you” drawing for twenty $25 Amazon.com e-gift codes (or your choice of an Amazon.com gift of comparable value) for everybody who completes the Adult with ASD Questionnaire by the end of April.

Need Assistance?

IAN's Research Manager, Dr. Alison Marvin, can be reached at 443-923-4143, 866-348-3440 (toll free), or researchteam@IANproject.org

Interactive Autism Network (IAN) Research Project at Kennedy Krieger Institute (Johns Hopkins Medicine IRB #: NA_00002750). Principal Investigator: Dr. Paul H. Lipkin.

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