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IAN's First Anniversary: Project Links Families and Researchers to Accelerate Autism Research
The Interactive Autism Network (IAN), a project collecting information online from families of children with autism spectrum disorders (ASD) throughout the U.S., was launched in April 2007. Now celebrating its first anniversary, IAN has had a notable impact on autism research. More than 22,000 individuals in families affected by autism have registered to participate, and more than 70 autism research studies are using IAN data or recruitment services to support their efforts.
IAN's First Year Milestones

As an online network that links parents to researchers, the IAN Project (www.ianproject.org) is accelerating autism research in two important ways. First, parents – the people who know the most about their child – provide valuable data to researchers via the internet without having to leave their home or office. Second, children on the autism spectrum are matched with local and national research studies for which they qualify – a major help to researchers struggling to find participants for their studies.

To date, more than 22,000 individuals – including 8,000 children with ASDs, their parents, and siblings – have joined IAN Research, creating the largest collection of autism data in the world. Families from all 50 states are represented, as well as the District of Columbia, American Samoa, Northern Mariana Islands, Guam, Marshall Islands, and Palau. More than 70 autism research studies at respected institutions across the country, such as the National Institute of Mental Health and Harvard Medical School, are utilizing IAN data or recruitment services.

The project also features the IAN Community website, a welcoming library of evidence-based information which includes an active research-focused discussion forum and reports on the latest findings. IAN Community is open to all impacted by autism, whether or not they are participants in IAN Research. Thus far, nearly 5.5 million pages of content on IAN Community have been viewed by readers in 128 countries.

“By facilitating opportunities for parents of children with autism and researchers to connect, the IAN Project has taken a lead role in fostering dialogue and mutual understanding among the many stakeholders in the autism community,” said Dr. Paul Law, Director of the IAN Project. “It has ultimately created an invaluable opportunity to change the face of research as we know it.”

From data collected thus far, the IAN project has provided significant insights, including:

Autism Treatments : IAN families are using over 300 different autism treatments. The average number of simultaneous treatments that children with ASD receive is five, although more than half receive four or fewer. About 5% of children receive no treatment at all, while others receive dozens. Less than 35% of treatments are covered by insurance. (See Figure 1.)

Figure 1.

Gap Between Parents' First Concern and ASD Diagnosis: Parents were asked when they first worried about their child's development, and how long after that it took to get a diagnosis. Based on the data, it is evident that families endure at least a year and a half of uncertainty between their first worry and their child's diagnosis. Families of children with Asperger's syndrome face the longest period of uncertainty. (See Table 1)

Table 1. Average Gap Between Parent's Concern and Child's Diagnosis


Average Age of First Concern
Average Age of Diagnosis
Average Gap Between Concern and Diagnosis
Autism
(n=2007)
1.5 years

3.1 years
1.6 years

PDD-NOS
(n=978)
1.7 years
3.7 years
2.0 years

Asperger's Syndrome
(n=694)
2.5 years
6.7 years
4.2 years


Maternal Depression: 47% of mothers enrolled, with at least one child on the autism spectrum, report having been diagnosed with or treated for depression. (See Figure 2) In the general U.S. population, only 16.6% are faced with clinical depression in their lifetime.[i] What accounts for this difference? Future research will help answer this question.

Figure 2. Mothers of Children with ASD Participating in IAN: Depression
number of treatments
What's Next for IAN

The IAN project has only begun to achieve its potential, and will be launching several new initiatives over the coming year.

The IAN project has only begun to achieve its potential, and will be launching several new initiatives over the coming year.

Adults with ASD: When IAN first launched, only families with an affected child under the age of 18 could register. There was an immediate request from adults with ASD and their families to participate. In response, the first Adult with ASD questionnaire, designed with input from researchers and adults with ASD alike, will be deployed in 2008. One section of the questionnaire will itself be a research priority survey giving adults with ASD input on the focus of future adult questionnaires.

Parental Depression Questionnaire: This in-depth survey will explore parental depression in families with children on the spectrum. In keeping with IAN's mission to include families in the planning aspects of the scientific process, this research topic was developed with the assistance of both parents and researchers.

Vaccination Survey: In response to community feedback, IAN will launch a vaccination survey looking at the immunization practices of families of older children with autism to discover whether or not they deviated from standard immunization schedules with their younger children. The community's vaccination knowledge, beliefs, and practices will be explored.

Professional Online Community for Researchers: Later this year, the project will launch IAN Exchange, an online professional community for researchers and associates. Researchers will be able to connect with their colleagues from around the world and from disparate specialties and perspectives to accelerate autism research, develop best practices and guidelines, and promote research competencies.

“We are just now beginning to scratch the surface of the complex issues associated with autism,” said Dr. Gary Goldstein, President and CEO of Kennedy Krieger Institute. “Although we have made some strides, much more work remains to be done. By informing and educating even more families and researchers across the country about the IAN Project, we can continue to organize and mobilize the autism community's research efforts.”

For additional information:

Please Note: Findings Reported Herein Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted over the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.

We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact researchteam@IANproject.org.

[1] Kessler, R.C., Berglund, P., Demler, O., Jin, R., Merikangas, K.R., & Walters, E.E. (2005). Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the national comorbidity survey replication. Archives of General Psychiatry, 62(6), 593-602.
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