Support for Families with Autistic Spectrum Disorders

Here in Utah County, Utah, we have an unusually high number of children born with an autism spectrum disorder. We all have dreams of perfect children, born to complete our perfect little families. Yet, today one out of every 150 children born in the United States will be diagnosed with an autism spectrum disorder, ranging from PPSD-NOS to Asperger's to high-functioning and full autism. Even with such diagnoses becoming more common, the effect on parents and other family members can be devastating.

Sadly, many children with an autistic disorder are being passed over or ignored by unknowing parents, neighbors, relatives, and others close to these special individuals. Efforts are being made by national organizations such as Autism Speaks and various local organizations to increase awareness of the warning signs of autism so that parents, grandparents, teachers, and others in the community can recognize children who are at risk at a younger age. The earlier that educational programs and other interventions are implemented in the life of a child with an ASD, the better the child's chances of leading a happy and fulfilling life.

I recently chose to participate in a local research project being conducted by the Autism Research Program at the University of Utah. It was as part of this program that my now seven-year-old son was diagnosed with a full, high-functioning autism at the age of four. Our delaying in having him diagnosed has set back his progress, and it is my hope that by helping with the research done regarding autistic disorders and helping to raise awareness, other parents can be spared some of the grief and heartache that I, my husband, and my other children have experienced with my son Toby.

As part of the research we are hoping to determine if a genetic link exists for autistic disorders. Within my own family there seems to be a history of developmental delay disorders. My eldest brother was thought to have autism when he was very young, and it has recently been thought more likely that he has Asperger's. My sister's little boy suffers speech and social delays, though it is not yet determined whether he has an official autistic disorder. Therefore, there does exist within my family a seeming "predisposition" to autism spectrum disorders. The same holds true for many of the families that participated in our group. One family in particular has two sons and one daughter diagnosed with autism.

In addition to trying to establish some initial risk factors for autism, we as parents have also organized local support groups. We have organized groups that meet face to face in group settings once every six months, and we have chat rooms and message boards that are available for registered group members to communicate at any time. Knowing that there are others who are going through the same "trial and error" process that you are, who need a shoulder to cry on sometimes just as much as you do, and who have all the same questions you do about life and the future brings a great sense of comfort. Our goal was to help unite these families so that no one ever has to feel that they are facing their life challenges alone.

At the same time as we began to organize our support groups I was inspired by an HBO special documentary programmed titled, "Autism: The Musical." It featured a parent who started the non-profit organization The Miracle Project. This involved bringing together autistic children of all functioning levels to create and perform a musical and theatrical production. The results of this program truly were miraculous. I have extensive theater background and am very interested in seeing if we could start a similar organization here locally. I believe that autistic children have an infinite amount of talent just waiting to be discovered and shared. Finding a common interest and ability can help these children cross into our world and help us as family members and friends to cross into their world, creating better understanding for everyone. My plans for the future include continuing with the research groups, participating in the support groups, and seeking opportunity and funding for a local "miracle project" of sorts to help the children and families here in Utah.

I have definitely seen the lives of children and parents changed through the efforts that we have made already, and I know that things can become even better when we unite for a common worthy cause. My life has also been enriched by my participation, and I know that my efforts will not end with the close of this project.