By Robert Schroeder
“You always know it in the back of your mind when you see your child is not developing.”
She knew because her 3 ½ year-old son spoke almost exclusively in one word phrases.
She knew because of her son’s impulsive behaviors.
She knew, but she wasn’t ready to know.
Chicago resident Janet’s* son was diagnosed with autism in the summer of 2012.
“When they tell you, it’s like cramming you with information, and it hits you so hard,” Janet said. “It hit me really hard.”
What she did not know—or anticipate—was the daily uphill climb she faced to access the needed resources for her child. At the time of her son’s diagnosis, Janet’s family was enrolled in public insurance, and every request for resources from public and private organizations ended in rejection, a problem not rectified until she obtained private insurance.
When she enrolled her son in preschool shortly after his diagnosis, she encountered teachers who, no matter how well-intentioned, were simply not prepared to take on the challenge of autism. Janet says her son’s teachers felt he would best succeed in a special education-only class, while Janet felt her son would be more successful in a blended, inclusive classroom. She pushed to keep her son with his general education peers.
Today, her son is enrolled in half-day kindergarten in Chicago’s Little Village neighborhood. In fall 2013, Janet hoped to build a team of teachers and special education experts who work both with her and with her to extend his educational lessons to the home, but she experienced little dedicated outreach from the school. Again, after enrolling her son in a blended, inclusive classroom, Janet was notified by teachers just two weeks after the start of school seeking to move her son to an classroom for students with autism. Once again, she needed a “big fight” to keep her son in an inclusive environment.
Janet has managed to navigate these complex environments thanks to the assistance of the Resource Center for Autism and Developmental Delays, part of the University of Illinois at Chicago College of Education and its Center for Literacy. Thanks to a referral from Illinois Masonic Medical Center, Janet has become a frequent visitor to the Resource Center’s West side location (10 S. Kedzie Ave.) and has molded her own team of advocates for her son. Janet’s son is developing into a talkative, social and playful pre-K student as his fifth birthday approaches in February 2014.
“He goes on break from his therapies, and I’ll implement some of the educational resources I obtained from [the Center] at home, so it’s like he hasn’t even taken a break from learning and development,” Janet said.
One of the skills Janet is working on with her son is his control over impulsive behaviors. Currently, Janet says her son has a tendency to dump items out of a container or run around erratically. Using techniques she learned at the Center, Janet now uses a timer to create set times for activities and passes out “my turn-your turn” cards she obtained from the Center to reinforce a sense of orderliness. She also uses cards that instruct “stand in line” and “wait your turn” to reinforce impulse control skills in her son.
Janet has also leveraged the Center to work directly with school officials in furthering her son’s access to inclusive education. Upon learning of the school’s desire to transfer her son to a classroom for students with autism, Janet reached out to an autism specialist with her local district. The specialist evaluated her son and recommended he remain in the inclusive classroom, and upon Janet’s recommendation the specialist now visits the Center to obtain resources and develop new strategies for working with Janet’s son.
“It was always a complication in trying to help because I felt like I was making things difficult for the teacher,” Janet said. “I was determined to get a different vision for my son.”
The number of children diagnosed with autism is increasing—up to 1 in 88 in 2012 from 1 in 150 in 2007, according to the Center for Disease Control. Diagnoses among Latino children, however, shot up 110 percent over that same time period and 91 percent for African American children. And diagnosis timelines are often later for urban Latino and African American children, with families often lacking access to autism support services.
The Resource Center for Autism and Developmental Delays (RCADD), part of the UIC Center for Literacy at the College of Education, is pushing to ensure all Chicago families, particularly those in underserved communities on the South and West sides, have access to badly-needed services to mitigate the effects of autism in children’s lives. With the opening of a new center on the South side (below) to complement its first center on the West side, RCADD is heeding the longtime cries of community members.
“I always attribute it to the similarity to a food desert, with no healthy food around—the South and West sides are quite frankly autism deserts,” said Joshua Krasne, RCADD assistant director. “There’s a huge need and a huge lack of resources.”
RCADD’s primary target is parents and professionals working with Head Start students with autism and other developmental delays. Head Start classrooms are required by federal law to serve at least ten percent of the population with individualized education programs (IEPs), programs primarly used to guide students with disabilities through the educational system. Krasne says many of the students in Head Start with an IEP are diagnosed with an autism spectrum disorder.
The centers strive to ensure children with autism can succeed in the general student population in schools and are equipped with strategies to successfully navigate the challenges autism brings in day-to-day life. Center workshops provide professional development to parents and professionals on how autism impacts the sensory system, how teachers can best set up a classroom for students with autism and strategies for communication with children who may be non-responsive or feature limited verbal communication.
“Our grand notion is to create a trifecta between school, family and the centers,” Krasne (below, left) said. “That’s our end game: if we can have family and school on board utilizing the centers to create similar resources, that is our intent.”
RCADD staff have worked to create resources that are culturally relevant to the diverse users of the centers’ services. At the West side location, the primary clientele primarily speaks Spanish. At the South side location, the center is meeting a critical need in the African American community. In a field that has largely produced materials geared towards Caucasian children, RCADD has taken a vested interest in creating materials that are not just culturally sensitive but indicative of the communities it serves.
The targeted geographic access offered by the new South side center can literally be a life-changer. Krasne shared a story of a mother seeking custody of her child with autism currently in the foster care system. Initially, RCADD worked with both the case manager and the mother at the West side location, but as a South side resident, the mother struggled to travel to the West side location frequently. With the opening of the new center, the mother has been able to utilize more of the services offered by RCADD. Those services and tutelage were key, the mother said, in aiding her regaining full custody of her child.
* Note: names are changed to protect privacy of those interviewed.