The Interactive Autism Network (IAN) was launched by the Kennedy Krieger Institute in 2006 as the first online research community for autism families in the United States. IAN's role is to connect autism families with research studies seeking participants, while building the largest community-sourced autism research dataset in the country. For families willing to contribute to research, IAN is the front door. For families navigating research-driven clinical decisions, IAN's published findings are a useful source.

What IAN actually does

IAN serves three functions. First, it recruits families into autism research studies — both Kennedy Krieger studies and studies conducted at other research institutions partnered with IAN. Families can sign up, complete an enrollment questionnaire, and be matched with studies that fit their family's situation. Second, IAN publishes plain-language summaries of autism research findings for the general public. Third, IAN itself conducts research using the data families have contributed, producing publications that have appeared in major peer-reviewed journals.

Programs worth knowing

  • The IAN Research Database — community-sourced autism family data that researchers use (with appropriate IRB oversight) to answer questions that would otherwise require studies of unaffordable size.
  • Study matching — families enrolled with IAN receive periodic emails about studies they may qualify for. Participation is always optional.
  • IAN Community website — articles, research summaries, and discussion forums for autism families.
  • Published research — IAN papers covering everything from co-occurring conditions to access disparities to outcome variables.

When to engage with IAN

When a family wants to contribute to autism research without joining a long-term study individually. When parents are interested in understanding research findings and want a source that translates academic publications into plain language. When a family is seeking research-based answers to specific questions (e.g., "what does the data say about co-occurring conditions in autistic adolescents?").

The caveats from the autistic-adult community

IAN, like most autism research infrastructure, was built with parents as the primary participants and research target. The autistic-adult community has critiqued the broader autism research landscape for centering parent-reported data rather than autistic-adult-reported experience. IAN has been responsive to this critique over time — adult autistic participants are now welcome and visible in IAN data, and IAN-affiliated research has increasingly engaged autistic-adult voices — but the legacy framing of the platform still emphasizes parent-as-respondent.

How IAN fits

For families interested in research participation, IAN is the largest U.S. front door. For autistic adults specifically, the SPARK research initiative (autism research via Simons Foundation) and the AASPIRE community-based participatory research network are alternative entry points that emphasize adult and self-reported data more centrally. Pair IAN with these for a fuller landscape.

Find them: kennedykrieger.org, search for "Interactive Autism Network." Read a few research summaries before deciding whether to enroll your family.

Source briefs (internal): webearish-audit-2026-05.md

Disclaimer: educational content from autistic adults and the autism family community. Not medical or legal advice. Consult a qualified professional for medical and legal decisions specific to your situation.