Road Maps Needed



Jimmy 2007 at age 14 weighing 68 lbs



When Jimmy was diagnosed with autism  in 1996,  the incidence was 1 in 10,000 births.  Certainly, autism was a rare occurrence at that time and we believed that Jimmy was an anomaly.  Soon we realized that he wasn't the only child with autism as we saw similar children on the playgrounds and were hearing the word, "autism" more and more frequently from our peer parents. The Center for Disease Control and Prevention reports that in 2011 it is "estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD", (Center for Disease Control and Prevention).  This change is quite remarkable in 15 years. 

When a disease/disorder is rare, it is often difficult to locate trained professionals who can assist families in obtaining the resources that they need, or for that matter, find useful answers to questions.  At the beginning of our journey, I wondered why my questions seemed to be so puzzling to doctors, teachers and family members.  Responses that I often received seemed to make little logical sense or offer relief for Jimmy or our family.  Then it dawned on me, that we were at the beginning of, perhaps, a new disease and that answers were not readily available. It would require a collective effort to find useful answers. All of these well meaning doctors, teachers and professionals just didn't have the information yet to provide us with the needed tools. Basically, there were no road maps to help us find our way….the maps hadn't been surveyed, drawn or published. Much work would need to be done.

Lack of solutions for chronic ear infections, intestinal abnormalities, mouth pain and school issues would not be acceptable for us and many other families around the country. Families needed to seek out professionals that would listen to their stories and help create a plan of action.  The task was often daunting as the observations by parents often differed from what had been historically understood by the mainstream medical and educational communities.

We experienced caring pediatricians that saw our family's needs but didn't know how to guide us. They clearly felt at a loss.  I also saw frustrated doctors and teachers give up, feeling inadequate and unable to help. Parents were discouraged and saddened with the lack of solutions. As the number of kids being diagnosed soared, so often did the frustrations of professionals and families.  This wasn't very helpful for anyone.

In 1999, I went to the University of Minnesota in support of a Minnesota Autism Prevalence study. Minnesota Researchers were concerned at the seemingly growing number of children on the spectrum. We believed that if the prevalence was proven to be higher than originally calculated, governmental agencies and organizations would pay  attention allowing pathways for new  funding, services and future answers. It would also hopefully speed the development of new resources. In 2003, the University of Minnesota in partnership with the State of Minnesota Health Department published the Minnesota surveillance study indicating that autism was present in 1 in 250 children.  As a result of this study and many other similar prevalence studies around the country, new funding and research would begin.

The flood gates opened. The MIND Institute was the idea of a couple of dads in California.  They partnered with UC Davis and the State of California to fund and build a remarkable facility to study and care for families with autism.  Autism Speaks was founded by the grandparents of a child with autism and it offers amongst the largest funding streams for awareness and research in the country. Universities like the U of Minnesota are participating in the LEND grant program.  The LEND grant is a Maternal and Child Health Training grant. This grant places various type of Fellowship recipients with medical professionals and families to understand and learn about diseases/disorders like autism.  Medical School students are learning and developing interests in careers in caring for those with ASD.  Help is on the way.

Families, professionals and organizations around the country have partnered together to build the road map.  With the incidence being as high as it is, most people have a personal connection to autism.   As more is learned, the road becomes clearer. Sometime in our future, we will understand where it is that we need to go and how to identify and treat those with autism.  The map is large and we need to continue to draw the lines.   So, think about becoming an autism cartographer and share your talents.