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Why join an autism research study?

My daughter has an autism spectrum disorder, as well as numerous other medical conditions. Like all parents of kids with special needs, I have spent enormous amounts of time and energy on hospital stays, therapies, and advocacy. That makes me pretty busy. But I've also taken some time to participate in research. Let me tell you why. First and foremost, I want to be aware of the most current therapies so that I can take advantage of them for my child. Secondly, I want to help scientists find out the causes, the most effective therapies, and, if possible, a cure so that other children will be spared something of what we have gone through. Third, research is fascinating.

Other parents agree. One feels it's important to participate in research so that we can bring the expertise we each have about our own children to the table. Another parent with four children on the autism spectrum decided to participate in research partly because "there's a lot of misinformation out there" about the causes of autism and partly because of the government's involvement. The study she chose "will," she said, have a [national] impact on policy decisions related to autism and developmental disorders." Helping to influence national policy is a good thing, and you can do it too as autism research moves full speed ahead.

In 2006, the U.S. Department of Health and Human Services established the Interagency Autism Coordinating Committee, which coordinates research efforts and facilitates information exchange. The Committee developed a Strategic Research Plan in 2009. The 2010 update summarizes what is known and where more research is needed and addresses seven different areas: the signs and symptoms of autism, autism's biological basis, its causes and prevention, treatments and intervention, services, the needs of adolescents and adults, and research resources. Because it includes a budget that may be used by federal agencies and private organizations to plan research, it provides the basis for many funding programs and strongly influences the type of research that is being conducted.

In 2009, the stimulus law made the largest federal government investment in autism research to date. It allocated $80 million for grants to be awarded through the National Institutes of Health. Proposals receiving these awards are expected to jump-start the short-term objectives of the Interagency Autism Coordinating Committee Strategic Plan. That makes the Strategic Plan even more important.

Autism research is also moving to the global stage. The International Society for Autism Research held its annual meeting in May 2010 and it was very well attended. The meeting's 900 sessions covered a wide range of issues and attracted 1700 participants. There were sessions on the possible causes of autism, autism's prevalence, diagnostic challenges, autism's characteristics--including such categories as bio-markers, neurophysiology, child development, self-regulation, self-image, social functioning, communication, sensory processing, anxiety, and medical issues--various types of interventions, and autism's impact on families. Many of the researchers and clinicians who attended base their work on the Interagency Autism Coordinating Committee Strategic Plan and are writing proposals for stimulus fund grants. And some of these projects are currently recruiting participants.

One such study, Early Autism Risk Longitudinal Investigation (EARLI), is a national project with sites in Southeast Pennsylvania, Northeast Maryland and Northern California. It needs mothers of children with autism who are expecting or hoping to have another child. Focused on the time between conception and the child's third birthday, this study is exploring the causes of autism, its biological markers, and risk factors for having another child with autism. For more information, go to

There is also another large, national research project, the Study to Explore Early Development (SEED), being conducted at centers in six states: California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania. The goal of this study is to explore the possible causes of autism and other developmental disabilities. Families who wish to participate must have a child who is between two and five years old. The study needs children whose development is typical, as well as those who have autism or another developmental disability. More information is available at

What happens when you participate in either one of these studies? You fill out questionnaires about your health, your child's development, and your child's daily life, and you visit the appropriate clinic so that the researchers can perform their own assessments. And what do you get out of it? A summary of the assessments, which can be helpful in seeking educational services, some monetary compensation, and a feeling that you are doing something that could dramatically improve the lives of people born with autism or other developmental disabilities. Please consider joining a study. It may be one of the most satisfying things you've ever done. *

Jane Schoenfeld is a member of the Kaiser Permanente Division of Research, Autism Research Program Community Advisory Board. She first got involved in research when her hospitalized daughter helped test a monitoring device which is now widely used. She has written a number of articles for EP and other publications. She has also completed a memoir about raising a child with multiple medical conditions.
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Title Annotation:Autism
Author:Schoenfeld, Jane
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Apr 1, 2011
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