By Jacqueline Grant
Each year in the United States one in every 110 children is diagnosed with autism, or more correctly Autism Spectrum Disorders (ASDs). In Nevada, the Autism Coalition of Nevada estimates there are more than 6,000 Nevada children with ASDs. For many of us without direct association with the disorder, the word autism conjures up a vague set of behaviors gleaned from television or movies. Yet for those families, such as Ryan and Diana Cleveland, who are raising an autistic child, the reality of autism is much more concrete and all consuming.
According to the Centers for Disease Control, ASDs are a “group of developmental disabilities that can cause significant social, communication, and behavioral challenges.” A spectrum disorder means that it affects each person differently and symptoms can range from mild and almost unnoticeable to severe.
It is difficult to know what causes autism, but parents tend to realize something is wrong when they notice their child exhibiting unusual behaviors usually by the age of 3. The Clevelands already had a little girl, Abby, when their son Josh was born and they sensed early on that something was different with Josh’s development. His ability to speak was delayed and he rarely made eye contact with them.
Following surgery to fix a hearing problem, Josh’s doctor recommended that his parents have him evaluated and it was during this time that counselors noticed red flags for possible ASDs. When the diagnosis came, Josh was 2 years old and the Clevelands’ vision for their son’s future changed abruptly. They began researching programs for Josh and eventually, through a strange twist of fate, they found Dr. Pat Ghezzi. “One of my Facebook friends posted an article about autism,” explains Ryan. “The article referenced Dr. Ghezzi and his team at the University of Nevada, Reno.”
Dr. Ghezzi is the director and co-founder of the UNR Early Childhood Autism Program, the first and only such program in Nevada and one of just a few in the world. At the core of the program is Applied Behavior Analysis (ABA). Tutors trained in the methods of ABA work in unison with a young child and the child’s parents to strengthen age-appropriate behaviors and weaken undesirable behaviors. With early, intensive intervention, nearly 50% of children that are diagnosed and treated at a young age go on to live independent, productive lives. With the alternative being the possibility of a lifetime of support, the Clevelands lost no time in meeting with Ghezzi.
Josh, now 4, started the program at UNR in April of 2011 and the Clevelands saw huge behavioral improvements almost immediately. Josh has five tutors who spend a total of 30 hours each week working with him in the comfort and security of his home. “Josh has to learn how to learn,” explains Diana. In just a few months of therapy Josh was already able to make eye contact and ask correctly for what he wanted. Tutors also help the Clevelands learn how to manage and modify their own interaction with their son.
The success of intensive behavioral intervention is closely linked to the number of hours tutors spend with a child, which can be prohibitively expensive. This is where the Sierra Kids Foundation comes in. Each year the non-profit organization hosts the Wild West Shootout to raise funds in support of the Nevada program.
Funds are used to provide scholarships to families who would otherwise be unable to be a part of the program. Over the course of two years the Clevelands received $12,000 to help pay for the 30 hours tutors spent each week with Josh.
For parents dealing with autism, there can be a lot of stress and confusion but programs such as Ghezzi’s give them hope. “I know what it feels like to be desperate,” says Diana, “but God has shown up.” Both parents have an unshakeable belief that even though they would not have chosen this challenge, they are experiencing exactly what is best for them as a family. And what are their hopes for Josh? Ryan responds, “I just want Josh to be the best Josh he can be.”
For the Cleveland,s Dr. Ghezzi’s program and the financial support from the Sierra Kids Foundation are giving Josh exactly that — the chance to be the best Josh he can be.