 Since our son was first diagnosed with autism in 1996, we have watched the incidence rate for autism jump from 1 in 2,500 children to 1 in 110 children. And we kept asking ourselves, "Is anyone paying attention to these statistics?"
But the truth is, these aren't statistics. These are young children, and their families whose lives have been altered by the effects of autism. And, whose opportunities and quality of life could be severely limited without the right programs, treatments and services.
The good news is that children with autism can learn and improve, sometimes significantly, with the right interventions. And, the earlier a child is diagnosed and begins treatment the better the chances for improvement and the long-range outcome for that child.
But funding for effective programs and treatments has not kept up with the explosive demand. Many families are seeing improvements in their children with autism through what is considered "alternative treatments." While some of these treatments have shown promise, historically most of the initial assessments, trial data and outcomes were never captured and made available so that useful information could be obtained from these parent-funded treatments. Promising treatments need to be studied so that autism treatment and autism research can be advanced.
Historically, autism treatment has required that parents investigate, assess, finance and advocate for the various treatment modalities for their children. This is a test of their physical, emotional, financial and intellectual resources. And we believe this places undue burden on parents, who are already providing all the fundamental care of raising a special needs child (care that requires consistency, behavioral management, and all the trials of feeding clothing, putting to bed, etc.) as well as care for and raise siblings, earn a living and provide for a healthy, happy home environment. A lot of parents are unable to pay for treatments that could help their child. The stress, heartache and financial burden of autism can be overwhelming for families.
In December 2003, we started NFAR in order to raise funds to help children with autism. As parents, we wanted to see effective treatments, resources and opportunities made available for ALL children with autism. And not just in their early life, but appropriate programs that would help them reach their potential throughout their teen years and into adulthood.
Through our fundraising efforts such as the annual San Diego Race for Autism, we are funding outreach, pilot treatment projects educational programs and transitional studies. NFAR is working to optimize the learning environment for children with autism during school time hours. And, we are providing funds for programs that serve the underserved communities in San Diego.
Today, our son with autism is continuing to make progress. He has plans for his future, and we want to give him those opportunities.
Children with autism deserve a future starting today.
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Juan and Sharon Leon
NFAR Co-founders