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http://www.azcentral.com/arizonarepublic/viewpoints/articles/0406resnik0406autism.html

Genomics offers rare glimmer of hope to autism victims

Apr. 6, 2003 12:00 AM

 



My family's experience with autism now spans a decade. When our son Matthew's condition was diagnosed, physicians and professionals were quick to acknowledge there was no cure for his lifelong communications disorder. Their advice was "love him, accept him and plan to institutionalize him because there is no hope for his future."

This mysterious childhood disorder now affects one in 250 children younger than 10. Many of those whose conditions are diagnosed are incapable of understanding other people's feelings and needs. Frequently, language and intelligence fail to develop, making communication and relationships difficult.

We refused to give up on our son's development, no matter how small the progress. We had to accept that Matthew's intractable disorder would be with us forever and that plans for our family's future would have to change.

But now there's hope.

When Arizona landed the International Genomics Consortium and created the Translational Genomics Research Institute, it was cause for our family to celebrate. Our state assumed a pole position for attracting the highly sought-after biomedical and biotech industries.

It not only brought together economic development interests, but it created a vision for the future shared by leaders from government, business, education, health care and the philanthropic community. It also provided us hope that is now being shared with parents of children with autism across the country.

Last week, the Southwest Autism Research & Resource Center and TGen announced a collaboration that we anticipate will lead to answers and treatments for our nation's leading childhood developmental disorder.

After our recent series of meetings with the bright minds at TGen, I envisioned myself in a place I haven't occupied for more than a decade - life without autism. Still wanting to guard my emotions and not wanting to set myself up for disappointment, I couldn't help but recognize there is hope beyond the myriad therapies we've tenaciously employed and, in many cases, discarded through the years.

There is a course being charted that may someday soon enable us to understand what Matt is feeling, where he hurts and what we can do to make it better.

We hope for breakthroughs that will bring Matthew into our world, that will allow our daughter to live her own life without the burden of someday needing to care for her little brother or having to worry about her own predisposition for having children with autism.



Dr. Dietrich Stephan, director and senior investigator of the TGen Neurogenomics Program, noted that the Human Genome Project has played a major role in providing us "the ability to study how the environment and genome interact to potentially predispose one to autism."

Epidemiological studies suggest a strong genetic component to autism. This is reflected by identical twins sharing the disorder and the fact that it occurs in boys four times more frequently than in girls. Some studies provide support for the prenatal or perinatal origin of autism, as many children display delayed development from birth.

Working together, TGen and SARRC are committed to better understanding the underlying biological reasons for autism, its genetic expression at various developmental stages and how a variety of environmental exposures impact specific genetic markers.



"Families in our state have an opportunity to be a part of cutting-edge research that may not only help prevent this disorder from taking more children hostage to their isolated worlds, but to improving the lives of individuals now affected," said Dr. Raun Melmed, SAARC medical director.

There's nothing more powerful than the passion and hope of families caring for a child with a lifelong disorder. And there's nothing more promising than combining that passion with the talents and dedication of TGen's research scientists.

Living with autism for the past 10 years has taught my family more than we ever thought we needed to learn. But most important, we've learned to never lose sight of our hope because there is a cure out there - we just need to find it.



Denise D. Resnik is president and co-founder of the Phoenix-based Southwest Autism Research and Resource Center and president of Phoenix-based Denise Resnik & Associates. Contact the center at (602) 340-8717 or visit its Web site at www.autismcenter.org.

 

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