Without limits: Autism Treatment Program changing lives

By Valeria Nanclares, Psy.D.

valeria nanclares pictureI am a clinical psychologist and I have dedicated my professional career to working with children with developmental disabilities, in particular autism spectrum disorders, and their families. I am originally from Argentina. I came to the United States in the late 90s and in 1999, I was brought on by the Pediatric Developmental Center at Advocate Illinois Masonic Medical Center to develop their autism treatment program.

At the time, the incidence of autism was on the rise, but there were very few resources available for families—in particular, low income families. Families who had financial means were able to secure large amounts of therapy hours for their children, at a cost of $30,000-$50,000 a year, but those without financial means were not able to access services beyond what was being provided at school. School services were, for the most part, inadequate, insufficient and highly inconsistent.

I started my work in autism at a Neurological Research Institute in Buenos Aires that was one of the international sites for genetic studies in autism. I was fortunate to have been trained by the best—being sent all over the world to train in diagnosis and intervention to help expand the autism services at the Research Institute. However, it became apparent very early on that there was an important component missing in every training: the training of the families. Physicians, psychologists, teachers, special education consultants, specialists were being trained, yet the families were nowhere to be found.

Meeting Advocate

When I moved to the US, I was put in contact with Dr. Carol Rolland, who was then the Director of Pediatric Services at the Pediatric Developmental Center at Illinois Masonic. She and I immediately connected and had a similar vision as to what an autism treatment program should look like. We knew that many children were being excluded from receiving therapy due to socio-economic status and that most families did not have tens of thousands of dollars a year to spare for services each year.

Dr. Rolland did not have a position available, but created one in order to make room for me to develop the autism treatment program. Our mission was simple, yet complex at the same time: create a program that is just as clinically effective as the interventions available, but more fiscally responsible, thus expanding access to services. She gave me the gift of time. I had six months to develop a program—six months of which I spent researching and developing my vision of an ideal program. That vision included a strong collaboration with the parents and an integration of evidence-based practices to be able to serve each child uniquely.

Our hypothesis was that if we worked with the systems in place, mainly the family and the school, fewer one on one therapist hours would be needed. If we trained the families to understand all the approaches that the therapist would be using and collaborated regularly with the teacher, parents would be successful carrying over the strategies in the home and community environments and teachers would feel supported and guided, thus reducing the number of therapist hours and therefore the overall cost to families.

Putting it to the test

After developing the model, we studied four children and collected data. We had a small grant from Bank One that allowed us to provide this service at no cost to the families. The results were just amazing. The children were making remarkable gains and the families appeared to be less stressed and able to parent their child in a way they never thought possible. With those results, we went to the Department of Human services and were able to secure additional funding to continue to work with families. Funding continued to grow as the Autism Treatment Program continued to show very positive outcomes for children with autism and their families. The results of the program were published in the International Journal for Public Health in 2010. I am proud to say that today, a program that started with four children, is one of the largest, most comprehensive autism treatment programs in the region.

Children from all over the Chicagoland area have benefited from our services. Countless parents have been trained and feel competent to continue to foster their child’s growth and learning. However, as the State of Illinois has continued to be in financial peril, many social and educational programs have lost their funding. Unfortunately for us, in 2008, all funding for the Program and the Pediatric Developmental Center was cut from the state budget, but our mission was not deterred. We remained committed to providing quality services to all families, regardless of financial means.

Over the years, we have received generous donations to help us continue our mission, as well as partnered with Advocate Charitable Foundation to continue to raise funds for families in need. The Masonic Family Health Foundation has been a tremendous supporter, dedicating the funds of their annual golf event for the past seven years to the Autism Treatment Program. Our mission prevails and we continue to see families from all over the Chicagoland region whose children are in need of evaluations or intervention, regardless of financial status.

I go to work every morning feeling blessed. I am doing the work I love with a remarkable team of professionals, each one contributing to the success and excellence of our program. I have had the honor to work with hundreds of children and their families over the years and am inspired by their strength and determination. We are now expanding the program across the Advocate system, starting with Advocate Children’s Hospital campus in Park Ridge and continuing with Oak Lawn, thus extending access to quality care for hundreds of families.

Timmie’s story

Slide2One patient who is near and dear to my heart is Timmie, a graduate of our program. He started with us at the age of three. His parents had recently received his diagnosis of autism and had been informed that Timmie was significantly mentally handicapped, meaning he would likely never learn to speak or be functional. His parents were devastated and arrived at the PDC feeling quite defeated. I told them that there was no way to know what skills Timmie had or didn’t have, as he was unable to show us at the time.

Because Timmie’s family did not have the money to pay for the programs he needed, they are one of the many families that have benefited from scholarship funds over the years. I asked them to take a leap of faith with us and allow us to work with Timmie and them to improve his functioning. At the time, he was nonverbal, was engaged in some sort of tantrum—screaming, crying, and kicking—most of the day, to the point that his mom described their life as being “prisoners of their own home,” as they were unable to take him anywhere.

TimmieHis parents participated in our parent training, we began to work with Timmie in the home with his parents as active collaborators in the sessions, we worked with his teachers and Timmie began to develop skills. He learned to communicate and his tantrums reduced significantly. Timmie continued through school, starting in a full self-contained autism special education classroom and then moving on to being integrated into some regular education classrooms until he was fully integrated with his typically developing peers in his fourth grade year. He was accepted into Northside College Prep for high school and during his sophomore year was recruited by 66 universities, including NASA, because of his math and science scores. In order to stay close to his family, Timmie has chosen to attend the University of Illinois at Chicago, on a full scholarship.

I couldn’t be more proud of the young man Timmie has become. Not all children will become what he has, but we will never give up. Autism is an enigma and it is up to us to help unlock all their wonderful secrets, no matter what shape they take.

April is National Autism Awareness month! To support the Autism Treatment Program, visit our website.