Sunday, December 2, 2012

Fighting for Our Children

This week, the U.S. House Oversight and Government Reform Committee held meetings in which members of Congress questioned representatives from the National Institutes of Health and the Centers for Disease Control as well as autism advocates regarding the recent significant increase in autism. Fifty years ago, the U.S. autism rate was 1 in 10, 000 children; under the current epidemic, 1 in 88 children in the U.S. has autism. A controversial topic discussed was the potential role of vaccines, which the NIH and CDC insist has no link to the increase in autism rates. However, their research studies that often focus upon genetics have not proven helpful in dealing with the rise in autism or in helping those already diagnosed with autism.
By contrast, autism advocates emphasized the need for environmental research, treatment, and services, especially for adults with autism, who have limited resources currently available to them. During the hearings, the need for parental input, which is often ignored by scientists, was emphasized since parents have direct experience with autism. Rep. Paul Gosar of Arizona commented on the valuable knowledge parents of children with autism have, stating, “We should be focusing on the family. They’re telling you what’s going on.”

In watching video clips from the hearings on C-SPAN’s website, I was impressed with many of the members of Congress who showed great compassion for the families touched by autism and frustration with the government agencies who are failing to serve these children. Despite the millions of dollars spent on research, a definitive cause for autism appears to be nowhere in sight, and they appear to be no closer to discovering a cure. Furthermore, services for children and adults with autism cannot keep pace with the rapid rise of newly diagnosed cases. I watched as parents and autism advocates in the audience nodded their heads in agreement as to what needs to be done to help and shake their heads or roll their eyes in frustration as representatives from the NIH and CDC failed to give any useful information. These government agencies need to know that parents of children are not going away quietly, and with dramatically increasing autism rates, there are going to be even more parents demanding answers and help for children and adults with autism.

One of these autism parent-advocates, Lorri Shealy Unumb, appeared on the stage of the NASCAR Sprint Cup Awards on Friday evening with her son Ryan, who has autism. After her son was diagnosed, she discovered that insurance companies would often not pay for services for children with autism. Using her legal expertise as an attorney, she drafted a bill for the South Carolina legislature regarding insurance reform so that children with autism would be covered. Known as “Ryan’s Law,” this bill has been enacted in 31 states to help families with autism get insurance coverage for their children’s treatment. In addition, seeing the need for appropriate education for children with autism, she established the Autism Academy of South Carolina. As a fellow autism mom, I was delighted that NASCAR recognized Lorri Shealy Unumb’s outstanding efforts to help families dealing with autism by honoring her with the Betty Jane France Humanitarian Award. 

If there is any doubt about parents’ commitment to their children with autism, one only need to observe the efforts they expend to help their children get better. This week I had the opportunity to meet three autism parents whose devotion to their children was apparent in our conversations via e-mail, phone, or Facebook. The first, Julie Tracy, had left a comment on my blog telling me about her son, who is about Alex’s age, and the nonprofit organization her family has established to help adults with autism, the Julie and Michael Tracy Family Foundation. According to their mission statement from their website, “The JULIE + MICHAEL TRACY FAMILY FOUNDATION is dedicated to improving the quality of life and independent outcomes for adults with autism, advancing psychiatric research and expanding public awareness and understanding of this rapidly expanding demographic.” In addition, they are planning a residential setting for adults with autism that will allow them to develop independence and skills needed to be successful. Through our e-mails, I learned that Julie’s son, like Alex, had to be hospitalized for psychiatric treatment, and their experience made them realize the need for appropriate services for adults with autism, leading them to develop the foundation to provide necessary supports not currently available. Her devotion not only to her son but also to others like him motivates her to accomplish a noble goal to help adults with autism who cannot help themselves.

Besides my e-mail conversations with Julie, I had a phone call from an autism dad this week who told me about his two adult sons with autism; he and his wife have dedicated themselves to making life better for these two young men. Despite all our efforts and interventions, both of our families have struggled with our sons’ aggression. He and I discussed the various medications our sons have been prescribed to help them function better. Although neither of us works in the medical field, we discussed the medications, their classifications, generic names, and side effects as though we were pharmacists.  As autism parents, we have learned to navigate the medical field, learning the lingo along the way. During our phone conversation I was impressed with his fierce devotion to his sons and his optimistic attitude about making their lives better. Also, by connecting with him and Julie Tracy, I felt comforted that other parents had been through experiences similar to those Ed and I have had with Alex.

Another autism parent connection I made this week was with an autism mom through one of my Facebook groups. After finding out that her child has sensitivities to glutens, she decided to implement the gluten-free diet and wanted suggestions as to what her child could eat on this very restrictive diet. Since Alex has been on the gluten-free diet for many years, I was able to make some suggestions about gluten-free foods and substitutions. As she and I e-mailed back and forth several times, her strong motivation to help her child was evident, and I was pleased to be able to help get her started on the gluten-free diet. Throughout this week, I have been reminded that the only way the autism tide is going to turn is through the tireless efforts of parents who will not give up until their children get the help they so desperately need. Moreover, by working together, parents can share information, insights, and support so that we can accomplish our ultimate goal: helping our children to reach their full potential.

"I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20

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