When Cynthia had her first son, a chubby little boy named Jacob, she was ecstatic, and deemed him “perfect” in every way. Ten pink, plump little toes, a sweet pink little mouth and the huge, serious brown eyes of a sage.
As Jacob grew, Cynthia noted his progress carefully, comparing his development with his sister’s. She rolled over sooner, but he pulled himself up to a standing position earlier. They both found their feet with their hands around the same time, but Emily began to form words sooner…much, much sooner.
Dr. Jeff Sigafoos (left, seated) and Dr. Mark O’Reilly created and coordinate the only doctoral program in autism and developmental disabilities in Texas.
With a mother’s unerring intuition, Cynthia began to notice several things about her perfect little boy that caused her fear and unease. Although loving, he seemed to be able to do without the company of others for long stretches of time, absorbed in spinning a pot top or the wheels of his Tonka dump truck, alone in the playroom. When he became frustrated, his tantrums seemed to Cynthia to be more severe than those of other children, and he would bite her, in one of his rages, hard enough to draw blood.
During visits to the grocery store, Jacob would wail inconsolably if not allowed to touch the apples, touch the oranges, touch the pears. And long after other children his age had started to build words into phrases, Jacob still had not moved past a dreamy-eyed “dee-dee-dee” and “da-da-da.”
Parents and friends cautioned Cynthia that boys simply learn to speak later and urged her to be stricter, perhaps spank Jacob occasionally and stop being so lax with the discipline. Despite the barrage of advice, Cynthia’s instincts left a sick feeling in the pit of her stomach and conviction that Jacob’s behavior was something beyond his control.
Finally, last year shortly before Jacob’s second birthday, Cynthia heard from a doctor four words that changed her family’s life forever: “Your child is autistic.”
Like tens of thousands of other parents who have heard the same diagnosis, Cynthia doggedly began a quest for information and discovered, to her surprise, glimmers of hope.
As recently as 30 years ago a diagnosis of autism might have meant a lifetime of confinement to an institution and complete resignation on the part of caretakers. Today, however, pioneers like Dr. Jeff Sigafoos and Dr. Mark O’Reilly in the Department of Special Education at The University of Texas at Austin are redefining what it means to be autistic and offering the possibility of greater normalcy to thousands of families.
Some autistic individuals benefit from the use of handheld devices that contain recorded instructions for simple tasks such as washing your hands or making a sandwich.
In the past four years the two professors have started a graduate program with a doctoral concentration in autism and developmental disabilities at The University of Texas at Austin, the only such program in the state and one of a handful nationwide. The instruction that participants in the program receive prepares them to use the most advanced research-based techniques available when addressing autism and is increasing the number of highly qualified leaders in the area of developmental disabilities.
“Although no one knows what causes autism and there is no known cure,” said O’Reilly, “we’ve learned quite a lot about effective interventions since 1943 when the syndrome first was identified. Before that, kids who exhibited the symptoms of autism were called schizophrenic or psychotic, ‘put away’ and there were few or no attempts to teach them.”
Without appropriate intervention or teaching, an autistic child can present a significant challenge to caretakers.
Autism is a collection of behaviors and developmental patterns that cluster together, manifesting itself differently from person to person and with varying levels of severity.
Although autism typically is not diagnosed until a child is between three and six years of age, some experts have noted that about 75 percent of parents already are identifying atypical behavior in their autistic children before two years of age.
Statistics show that autism is three to four times more likely to affect males than females, and about 20 percent of autistic individuals exhibit what’s been termed severe challenging behavior in the form of self-injury or aggression. They may hit, bite, throw things, destroy property or bang their heads against stationary objects. About 50 percent of them, when assessed for cognitive functioning, score in the mentally retarded range, about half do not develop speech and language at all and about 90 percent suffer from significant sleep disturbances.
An autistic child typically does not develop social relations with others and often exhibits no apparent need for affection from parents, refusing to make eye contact and appearing unnaturally withdrawn and aloof. Because of an insistence on sameness and a strict rigidity of behavior patterns, disruptions to routine or surprises can unleash tantrums and aggression.
Many autistic children exhibit either underdeveloped or overdeveloped sensory perception and seem unable to sense joy or pain. This may include an oversensitivity or insensitivity to sounds or sense of touch.
With an early diagnosis and intervention in the form of teaching and therapy, however, an autistic child’s future can alter dramatically.
Postulating that a significant amount of the disruptive behavior autistic individuals exhibit represents a frustrated attempt to communicate, Sigafoos and O’Reilly have been assessing alternative methods of communication and teaching those with autism new ways to “speak.” The theory is that if an autistic child can be taught acceptable methods of communication, much of the challenging behavior will abate and the child can begin to be integrated into family and classroom settings.
Early intervention, such as giving an autistic child alternative ways of communicating, often minimizes the impact of autism.
“I’ve been developing assessment tools to determine the reasons for behaviors such as hitting, screaming and biting,” said O’Reilly, “so that we can translate the results into intervention techniques that are easy for a parent or teacher, for example, to use.
“Our assessment instruments are conceptualizing the challenging behavior as a form of communication, and we want to identify the consequences or rewards an autistic person gains from the behavior. When a child throws things, does he get attention from mom? When he screams and hits, does he get to escape a task he doesn’t want to do? We’re looking at ways of teaching these children more appropriate methods of achieving those desired consequences and teaching caretakers to interpret the child’s signals accurately.”
To help children with no language skills, Sigafoos is using a device that looks like a large handheld TV remote control and is called a voice output communication aid (VOCA). On the top of the device are pictures of common everyday tasks such as making a sandwich or going to bed, and a caretaker can record messages onto the device that match and explain each task. The autistic individual can be taught to press the appropriate button to express a need and communicate it in an acceptable way to the caretaker. In addition to alerting a parent or teacher to a particular desire or need, the user will hear instructions about how to execute the task, perhaps teaching the autistic individual to eventually begin to act independently and complete some of the tasks without help.
“For the past several years my focus has been on trying to develop effective procedures for teaching autistic people how to use the VOCA,” said Sigafoos. “Then I’ve been looking at the ones who have been taught to use it and noting the benefits they experience in improved quality of life.”
In addition to the VOCA, Sigafoos and O’Reilly also are examining video technology as a teaching tool for those with autism. With a grant from the Texas Department of Health and Human Services, the professors are working in collaboration with Autism Treatment Centers of San Antonio and Dallas to teach autistic children basic life skills and ways to function more autonomously.
“We are looking at having icons on a computer monitor that illustrate basic tasks like washing dishes, putting away the dishes, taking out the trash,” said Sigafoos. “These are rudimentary activities that the rest of us take for granted but that autistic individuals have a great deal of trouble with. The autistic person can touch a particular icon and a video will pop up that shows, in detail, how the task is done. In addition to developing the video, we’ve also had to study ways to motivate them to use this assistive technology.”
Kelle Wood, executive director of a west Austin autism therapy center and Ph.D. candidate in Sigafoos and O’Reilly’s program at The University of Texas at Austin, has witnessed repeatedly the improved behavior that most children exhibit after being given an alternative way of communicating. In some children, functional speech actually develops.
Wood and the board certified behavior analysts on her staff focus heavily on language acquisition and on viewing communication as a behavior that can be taught with reinforcement and proper motivation.
“When an autistic child is moving through his environment,” said Wood, “he’s not picking up information incidentally the way that a ‘normal’ child would. The therapist or teacher has to break all of the information out there down for him and teach each thing specifically. At some point, many children will begin to pick up some of these things on their own and be able to operate a little more independently.
“We start by getting a child to request what he wants or needs and place a heavy emphasis on the requesting. We reinforce desirable behavior with things that the child already likes, such as a movie or particular toy or food, and we teach the child sign language as an alternative means of communicating. The signs are then paired with vocalizations and the hope is that we’ll see some speech development begin.”
For Jacob, who began therapy at the center a year ago, the gift of communication has equaled a marked improvement in behavior.
When he first entered the center, Jacob was not responding to simple queries such as “Where’s your mom?” or “What’s your name?” and his repertoire of behaviors consisted primarily of biting, hitting and screaming interspersed with extended bouts of withdrawal.
Almost a year into his therapy and instruction, Jacob is able to tell you his name when asked, smiles at the therapists, makes eye contact and energetically uses sign language to ask for his cup of juice or the colorful plastic fruit he loves to play with. When Cynthia says, “Jacob, put this paper in the trash,” he does so without incident and when he needs his mom’s attention, he says, “Come mama” rather than emitting a wail.
“Although there is no cure right now for this syndrome, these children do have the potential to learn,” said Sigafoos. “We have to give them some means of reaching the outside world and communicating, whether it’s a handheld voice recognition device, sign language, a computer program or a video. They need a voice.”
Photos: Sherre Paris
The names of the mother and child
have been changed for this story.
Special thanks to Kelle Wood, executive director of the
Central Texas Autism Center, for her courtesy and cooperation.