Educating Josh

Three-year old Josh Aguilar couldn’t meet his mother’s gaze and didn’t respond when his name was called. He turned away from other children and shrank from affection. He would scream, hide and sometimes even hit his own face. At times, he shrieked for no apparent reason. Words he had learned earlier were lost to him and those he retained were fragments: “wa” and “yum.”

Before the boy turned two, Josh’s pediatrician told his parents that he was OK. “Boys develop later than girls,” was his assessment, said Josh’s mother, Sandy Aguilar. “Just be patient and he’ll be fine.”

But just before he turned three, Josh was diagnosed with autism. The public-school system provided special education while he attended pre-school, but at age four he was still in diapers and clearly getting worse. The school district’s program wasn’t working, which created a painful dilemma for Rocklin residents Sandy and Jorge Aguilar.

Analytical and tenacious, the Aguilars dug into autism research and soon became better informed on the early indications of the disorder than many physicians. A neurodevelopmental disability that results from a disorder of the central nervous system, autism results in delays or a complete failure of one’s ability to interact with others, use language skills and engage in symbolic and imaginary play. Autism doesn’t seem to attract as much attention from the medical community as it deserves, and many pediatricians and family physicians know little about treating it, according to local autism experts.

Earlier this year, the Centers for Disease Control and Prevention reported that autism, in one degree or another, is found in about one of every 150 8-year-old children in the United States. From 1992 to 2003, reported cases rose an astounding 805 percent in children ages three to 22. Experts still are debating whether the rise is due to environmental factors, childhood immunizations, diet or simply a greater number of reported cases due to greater public awareness.

Luckily for the Aguilars, they have found a working solution. Their research led them to Applied Behavior Analysis. Unluckily, their local school district no longer supports the use of ABA for Josh.

ABA became highly recognized as effective treatment for young autistic children largely through the efforts of Dr. Ivar Lovaas, a professor at UCLA and founder of the Lovaas Institute for Early Intervention.

Lovaas’ program relies on intensive one-on-one intervention in which an instructor works with the autistic child to break skills down into smaller steps and to introduce opportunities to learn and practice those steps in a variety of environments. The process typically involves 35 to 40 hours of intensive instruction each week. The child’s behavior is constantly monitored and modified, and the parents provide continued reinforcement at home after hours. Intensity and consistency are critical.

ABA is endorsed by the Medical Investigation of Neurodevelopmental Disorders (MIND) Institute, a UC Davis research organization, and Families for Early Autism Treatment (FEAT), a national support group of friends, parents and grandparents of autistic children.

The Aguilars, whose daughter Kristi also was diagnosed with autism, have worked tirelessly with practitioners of ABA. A three-minute video they’ve made of the children’s progress at six-month intervals offers touching proof of extraordinary improvement. Josh now runs to answer the door when the doorbell rings and greets people with, “Hi, what’s your name?” He attends a kindergarten with other kids his age and plays ball and Frisbee at recess, yelling “Good job” to the other children. Instead of shrinking from affection, he says, “I love you, Mom and Dad.”

Kristi, whose learning curve has accelerated even more markedly than her brother’s, due to earlier diagnosis and intervention, is in pre-school and also is responding well to ABA.

ABA instructors typically work with children in their rooms at home and at times there are as many as four ABA practitioners per child. With Kristi’s diagnosis, the Aguilars realized they needed more space. They built a special home classroom with windows overlooking the backyard, and added school-sized chairs and tables. A large, colorful calendar—a teaching tool—hangs on the wall. There are eraser boards, a play kitchen and even an American flag for practicing the Pledge of Allegiance. A balance beam and small trampoline are used for gross motor skills. The kids’ colorful artwork is everywhere, and they fill the room with laughter.

But the Aguilars fear their childrens’ progress is threatened. Some months ago, the Aguilars were informed by the Rocklin Unified School District, which has been working hand-in-hand with their ABA provider, that it will no longer do so. It intends to terminate the agreement it reached with the Aguilars and suspend its funding of ABA.

The school district had agreed to be responsible for 37.5 percent of the costs of ABA when the kids were pre-kindergarten, 50 percent when they were in kindergarten and 75 percent from first through 12th grade.

Instead, the district now wants to use its own combination of services while the children are in school. “The change would mean that Josh and Kristi would be exposed to two different teaching approaches, one during the day and another in the evening,” said Sandy.

The Augilars have collected research showing that autistics suffer from the introduction of different learning methods. They feel that the school system’s approach failed before, and that ABA has shown remarkable results.

“And it’s difficult to understand the district’s position, since at least one other school in the same immediate area employs the ABA method, as does Elk Grove,” said Sandy. “In the Central Valley, it’s the accepted approach for most schools.”

A Rocklin Unified School District official indicated that she couldn’t comment on the Aguilar case, specifically, but Betty DiRegolo, director of special education, pointed out that the District has formal programs designed to meet the individual needs of each child with a learning disability. There’s one for pre-school children and one to accommodate children in kindergarten through third grade. “A special education plan is created for each child, since each case is different,” said DiRegolo. “Autistic issues range over a broad spectrum of behavior, and each case offers different challenges. We have special classrooms and one teacher for every two children. Each child is offered individual instruction in language, social, play and academic skills. Wherever possible, children are given regular classroom time, as well.”

Federal law guarantees “free, appropriate public education” for all students with disabilities, but interpretation of “appropriateness” is left up to school districts, and it’s tricky.

The law also ensures due-process hearings for parents and students who want to challenge school-district decisions. After mediation failed, the Aguilars entered into a formal trial procedure and were allowed to present evidence and arguments before a hearing officer. They have yet to file briefs, but their point is clear: The progress achieved by their children through the ABA program will be threatened if the change is made. The school system has insisted it won’t.

The hearing officer plans to make his decision in late May.