The Virginia Institute of Autism
Guiding Families Out of a "Journey into Aloneness"
(article published in Albemarle Magazine)
by David Clark

For Donna and David Cattell-Gordon, it began as it does for many parents, with a vague suspicion that something wasn't quite right with their child. Two weeks after their son Daniel was born Donna's sister, a doctor, was doing a routine checkup on Daniel's eyes." She gasped." Donna remembers, "and then she saw that I was standing there and said, 'Oh, it's nothing.' He wasn't tracking correctly with his eyes. When she did the test again a short time later he did track correctly. But I'll always remember that because she's not an alarmist."

Days went by and Donna noticed a puzzling lack of recognition with Daniel that she hadn't noticed when her older son Joseph was the same age. "Joseph knew me within a day. He would follow my voice around the room, whereas Daniel wouldn't. He was happy to cuddle with anybody. "Daniel didn’t seem to differentiate between his mother and anyone else. Donna took Daniel to a pediatrician and, like a car that works just for the mechanics, Daniel seemed to have no problem following Donna's voice around the doctor's office. The pediatrician gave her a smile, told her everything was fine and sent her on her way.

David, a social worker who had some knowledge of childhood disorders, was becoming increasingly sure everything wasn't fine. Daniel's motor skills weren't improving, and he seemed to be shutting down to the world around him. Donna, on the other hand, didn't want to believe anything was wrong and the couple began to get in heated arguments. "A lot of families fall apart over any kind of childhood tragedy and autism is one of them. People cope differently with the tragedy. Sometimes these coping styles work well together and sometimes they don't. "Donna and David were bounced between experts at the Kluge Children's Rehabilitation Center and in Washington DC. Finally a consensus was reached. At 20 months of age, Daniel was diagnosed with autism.

The term "autism" was coined in 1943 by Dr. Leo Kanner, a psychiatrist at Johns Hopkins University, to describe a group of children who seemed to have little interest in the outside world and showed marked deficiencies in communication and social skills and various behavioral problems. Early theories to account for the behavior included mental illness and bad parenting - both of which have been proven false. Due to a dearth of funding for research, the cause of autism has remained elusive. Vitamin deficiencies, hormonal imbalances and environmental factors have all been blamed. Studies of families with autism and related disorders have revealed patterns that suggest a genetic link. Recently, scientists have purportedly found at least one gene suspected of playing a role in the disability.

While scientists work to fins a specific cause for autism, other professionals struggle to diagnose the disability. The laborious path to a diagnosis that the Cattell-Gordons traveled is one commonly faced by families with an autistic child due to the complexity of the disorder. Autism manifests itself through a wide variety of behaviors and symptoms. Communication, social interaction, sensory sensitivity and behavior can all be affected. Symptoms range from mild to severe. Two children, both with autism, may act like polar opposites. Some arch their backs and scream when picked up, trying to avoid any contact: others just go limp in their parents' arms. For some children, normal sounds feel like a dentist's drill going through their ears: others don't respond to sound at all. Some children are hurtful to other children; others are relatively affectionate. To confuse matters even more, many of the symptoms of autism resemble those of other disabilities. Children with autism, which occurs in about two births per thousand, have been misdiagnosed with mental retardation, attention deficit disorder, even deafness. It takes professionals with a strong background in autism and related disorders to make a correct diagnosis.

There is another obstacle parents can hit on the road to a diagnosis, one harder to understand than just confusing symptoms. Often a doctor who suspects autism will give parents a less threatening diagnosis in the misguided effort to protect them and their child. This is exactly what happened to the Cattell-Gordons. One of the specialists in Washington initially said Daniel had a "regulatory disorder." When Donna found out the euphemistic nature of the diagnosis, she asked why he hadn't just told her it was autism. He admitted. "Because it discourages the parents so much that they won’t continue to work. "In reality, this well-meaning but misguided practice does more harm than good. It delays intervention, which is more effective the earlier it is done. It also makes the parents feel as though they've been duped. As Donna explains, "I felt so manipulated. At our first support group meeting, which included twenty-four parents, we all agreed we wished someone had just said, 'autism.' Respect us enough to just let us deal with it. Just like you'd say, 'this is cancer.'"

Donna and David found that after the diagnosis they had to face a challenge even more daunting: treating and disorder. No one seemed to have any solid suggestions. They were told to get Daniel into special education classes and speech therapy and to get themselves into a support group. Alison and Bernie Webb, friends of the Cattell-Gordons, with two autistic children of their own, faced the same problem. Says Alison, "I had assumed that once there was a diagnosis there would be experts, there would be doctors, there would be educators for my child. I got none of that." None of the treatments the specialists recommended, which ranged from head massage to vitamin Behavior, had any solid scientific basis and had shown themselves to be anecdotally effective at best.

In the course of their research, Donna and David came across a study done by Ivar Lovaas at UCLA. In the mid-1980s, using a method called applied behavioral analysis (ABA). Lovaas recorded significant improvement in the skills of a group of young children with autism. The study was repeated in 1993, again with measurable improvements for children. When Cattell-Gordons approached area professionals and educators with these findings, they were ignored and discouraged from trying to use the method. They decided to set up a home-based program for Daniel using ABA. After two years with some success, Donna and David realized that their resources weren't enough to make the treatment as effective as they knew it could be. What was needed was a community-based program: a place where training and resources could be shared among families dealing with autism. They went to the Webbs with the idea. Alison remembers, "I said, 'Let's just do it. I'll help you.'" In October 1996, with financial help from a private donation, the Webbs and the Cattell-Gordons opened the Virginia Institute of Autism (VIA).

In one of the eight classrooms at VIA, a woman and a boy are sitting across from each other at a small table. In front of them are three pictures, each of a different food. The woman gets the boy to make eye contact with her. She then points one of the pictures and gives him a simple instruction. "Name food." The boy does. There is praise from the woman. She then takes the picture away and points to the space it just occupied. "Name food." He does and he is given more praise. The woman is Robin Simard, one of the teachers at VIA, and the boy is Harry Webb, Alison's eight-year-old son. Though what he just done seems minor to the outsider, it is a big step for Harry. "He knows different foods but he can't come up with them in his own. To say them he has to be shown a picture," Robin explains. To be able to come up with the food name without the picture shows Harry is improving. Harry is working toward coming up with foods without any prompting at all. Between drills there is a three-minute break, and Harry is allowed to work on a puzzle. Harry returns to the table for the next drill with very little prompting. A seemingly minor event, but one that does not escape Robin. "Transitions between things can be a really big deal. He used to have to complete a task and then move on. He left the puzzle undone without getting upset, which is a big deal for Harry."

Robin Simard has been with VIA since its modest start with just four students in a building on Third Street in Charlottesville. Initially the program was held only in the afternoons and on Saturdays, but within a few months the number of students grew to six and the program was full day. By September of 97 VIA had moved to a bigger building (its present location on Park Street) and enrolled twelve children. Its primary goal of "providing comprehensive, outcome-based education to children with autism" has not changed.

At the center of VIA's educational drive is ABA. The program is based on the belief that most human behaviors are learned. A child has reactions to sensory information. And that child's caregiver lets the child now know which reactions are appropriate through conscious and unconscious rewards (praise) and punishments (disinterest). Autistic children have problems processing their sensory information. They are starting out from a skewed frame of reference - they experience things in a different way. ABA works by breaking down a skill or behavior into its simplest components. Teaching them to the child through the use of repetitive drills and then putting them all back together. Drills range from phonetics to spatial relations. Each drill is highly structured and results are recorded religiously in program notebooks and discuss the child's progress with the parents.

Most area children with autism don't get the benefit of this type of intense intervention. They are placed in public school special education classes. However, lumping these kids with children with a variety of other disabilities makes the prospects of significant gains unlikely. Furthermore, no empirical data is kept too objectively determine whether autistic kids actually improve in the school environment. The parents at VIA are quick to point out that there are good people working at schools, but they just don't have the training to deal effectively with autism. As David Cattell-Gordon explains, "In the school system, they have a view that autistic children will not succeed. There is a view that their behavior needs to be managed rather than developed. The resources for the kind of intense, aggressive focus that is needed for autistic children just isn't there. "VIA is the only school of its kind in the state, and many area counties have begun to see it as a valuable asset and are working in cooperation with the Institute to get autistic children more help. Albemarle County now sends four children to VIA for four hours a day, and Nelson County sends one child full time. Some counties, including Roanoke and Craig, had VIA send a representative to help set up a program. Tom Nash, head of special education in Albemarle County, says, "Our relationship with VIA has developed over time and we value VIA's involvement with the kids."

Some in the community are still not convinced VIA's approach is the right one. Many people, including educators and specialists in the field, believe that to keep a child in a room with just one teacher, separate from other children, is unkind: that they may need to be educated in a more social setting. Thus they push to get the kids into preschools. Donna remembers Daniel's preschool experience as less than successful. "Everyone we talked to urged us to get him into school. At home, Daniel was able to communicate with a language board. He would point to letter to spell out words. Within two days of going to preschool Daniel lost all interest in trying to communicate using the board. He would hold it and try, but it wasn't working so he just dropped the board. That wasn't a good sign to me. He wasn't learning in this environment."

Parents at VIA are convinced its program works. Nancy has been driving her 4.5-year-old son Trevor from Rappahannock County to VIA since last December. Trevor was constantly flapping his hands, banging his head and biting people and would have tantrums that lasted an hour. With the work of VIA, he no longer bangs his head or bites and his play is much more social. According to his mother, "What this program did was recognize how many facets of behavior had to be barraged. He had to be taught how to hug, how to kiss … It all has to be broken down into little pieces."

"The improvements are not just a matter of parents seeing what they want to see. The meticulously recorded data kept on every child provides the empirical muscle to back up the claims." Erica Drescher, director of VIA, explains, "One of the misconceptions is that VIA is only interested in isolating children. Our goal is to mainstream the kids if possible. It is, as we see it, a temporary thing. We're doing this so that kids can be in other classroom settings. The goal, the hope is that these kids aren't with us for the duration. "Three VIA students will be in a regular school setting within a year.

While autism inflicts great hardship on the child, it is at least as hard if not harder on the family of that child. Supporting family lies dealing with autism is another job VIA has taken on. "We get calls every single day from parents needing help," Alison admits. The help ranges from providing a research library families can use to helping groups in other areas get their own programs going.

As important as these services are, it seems that the most important thing VIA does for families is provide emotional support. A study in England determined that depression was far more common in parents of autistic children than in the parents of any other childhood disability, including Down syndrome. As Donna describes it, autism is a "journey into aloneness" that both child and parent take. "Your child is becoming solitary due to some disorder you don't understand. They are choosing not to be with you. As you follow them, trying to make them be with you, you lose your community. People in stores look at you because they think you can't control your child. They don't understand because your child looks perfectly normal and then does something bizarre. You can't go to someone else's house because your child may be the one who has to open every single door, every single bottle in the bathroom. You can't go out so you're slowly restricted and you become more alone.

"What VIA has done for me and, I think, other people, it’s become a kind of church in a way. It brings people together with hope. We're strengthened by it and we learn from each other. So that lost community, which is the great loss, comes back to us here and that has been a tremendous gift."

With the lack of educational resources in the state for children with autism, the opening of VIA is a godsend for them and for their families. The move to the larger building was made in the belief that they wouldn't have to worry about room for students for a while. The program was immediately full again with more students on a waiting list. Since its opening, VIA's reputation had grown rapidly. Alison attributes this to filling a need. "Parents are desperate to get help. Whole families relocate to get help." A Seattle family is currently looking to move to Charlottesville so their child can get the help they believe VIA can deliver. This doesn't surprise Donna. "I remember Alison calling me right after the school opened, and she said, 'I woke up and I was happy.' It's that moment of recognizing we've found a place where our children can learn. The kids can grow and be positive, in a good place. And the parents can too."