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.