The IAN Community:

A research-focused online library and meeting place welcoming families, researchers, and all those impacted by an Autism Spectrum Disorder.

(All inclusive – for individuals with ASDs, families,

researchers, physicians, educators, therapists,

friends, etc.)

IAN Community

IAN Community Home Page: www.IANcommunity.org

IAN Community

GOAL #1: To engage parents of children with ASDs in order to…

• Increase and maintain participation in IAN Research

• Solicit parent input on research topics of most urgent interest

• Generate feedback from parents on IAN Research and autism research in general

IAN Community

GOAL #2: To provide researchers with…

• A way to communicate the value of their work and findings to families and the larger community

• Research participants who are becoming educated about the research process

• An additional way to learn about families’ needs, experiences, and priorities

• Instructions for How to Apply to Use the IAN Data or Research Registry. (See “For Researchers” on www.IANcommunity.org)

IAN Community

GOAL #3: To help all visitors…

• Understand the value of research• Recognize gaps in our knowledge• Become informed consumers of research• Influence the future direction of research• Keep up with the latest findings, news, and

events

IAN Community

Resources on the IAN Community Site:

• Basic information on ASDs: diagnoses, challenging behaviors, treatments(Over 100 articles and 280 glossary items)

• Articles on diverse research topics by leaders in the field

• Reports on IAN Research findings –information flow back to participants and community

• Discussions focused on research topics –a place for parents and others to make their voices heard

IAN Community

Basic Information on ASDs

IAN Community

Researchers Reaching Families

• Articles on diverse topics by leaders in the field, such as:

• Simon Baron-Cohen – “Very Late Diagnosis of Asperger’s Syndrome”

• Catherine Lord – “Frequently Asked Questions About Autism Diagnoses”

• Beth Malow – “A Good Night’s Sleep: Why is it So Hard to Get?”

IAN will also help researchers using IAN Data or Subject Recruitment to “translate” their findings for a lay audience, making parents and others aware

of their work and its relevance to their own lives.

• Participation in the Discussion Forums

IAN Community

Sharing IAN Research Findings – A Two Way Street

IAN Community

Empowering Families and Others as Participants

IAN Discussion Forums such as:

• “Why I Participated in IAN Research”• “Your Input on Research Topics”• “IAN Research Findings”

IAN Community

Discussion Forum Example

IAN Community

Parents’ Voices

Parents ask Researchers to Find Out More About:

• Meltdowns (i.e. Mood Disorders, Tantrums, Rages) in ASDs• Milk Products, Allergies/Sensitivities, and GFCF Diets• Eczema, Psoriasis, Asthma, Allergies, Autoimmune Issues and

Autism – Connections?• Pregnancy & Birth – any connection to ASDs?

Amnio, Ultrasound, Induced Labor, SSRIs during pregnancy• “High-Functioning” Kids – Earlier Diagnosis and Intervention

Most Popular Forum Ever: • Mothers and Depression – sparked by IAN data

showing that “46% of mothers in IAN Research have been diagnosed with or treated for Depression.”

IAN Community

Discovering www.IANcommunity.org

Since our launch on April 2, 2007:

– 4,900 registered users (and registration is not mandatory!)

– 1.5 million pages viewed

– Average of 800+ visitors per day

– Average visitor stays on the site 11 minutes

– Average visitor views over 20 pages of content

They come, they stay, they read

IAN Community

Action Items for Researchers

To support the IAN Community, we hope you will:

• Write an article in your area of expertiseSee “Guidelines for IAN Authors” in your kit folder!

• Read and participate in the Discussion Forums – they are monitored and moderated.

• Inform affected families who visit your clinic or lab about the IAN Community

• Tell other researchers about the IAN Community

COMMUNITY: Making Connections

• Between Content Items…

Linking articles to research questions to findings to discussions

• Between People…

Linking individuals with ASDs, families, researchers, educators, therapists, physicians, and friends

IAN Community