Stuffed rabbits and teddy bears are scattered around her room. Drawings of stick children, flowers, and sunshine beam from a blackboard.
But Vanessa Jensen, Psy.D., is not a school teacher. The Wright State University School of Professional Psychology graduate is a pediatric psychologist—a good one. Throughout her nearly 20 years at the Cleveland Clinic, her office has been splashdown for patients who fly in from as far away as Egypt, Ireland, and Japan.
Jensen diagnoses and treats children with autism, a neuro-development disorder that can short-circuit communication, cripple social interaction, and result in repetitive behavior such as hand flapping, spinning, and rocking. Milder versions of the disorder result in less obvious, but still interfering, symptoms.
At the Cleveland Clinic, Jensen and fellow Wright State graduate Catherine Gaw, Psy.D., deliver a powerful one-two punch to this disorder, which can financially and emotionally bankrupt families struggling to understand and deal with its mysteries.
Gaw specializes in treating children and teens on the autism spectrum within the higher-functioning range. They have a form of autism called Asperger’s Disorder, characterized by at least an average IQ, normal language development, and an interest in having friends.
“What intrigues me the most is that these are really smart, talented people who have a different way of thinking about things than those of us who do not have Asperger’s Disorder,” Gaw said. “For me, the treatment is not so much about making them ‘normal,’ but helping them speak and understand the social language and cognitions of neurotypicals in order to effectively connect and to not feel isolated in their differentness.”
Both Jensen and Gaw credit Wright State and the School of Professional Psychology (SOPP) with giving them the skills and the in-depth experiences with patients to outdistance many of their peers from other schools as they launched their careers.
“SOPP had this intense program that gave you a nice blend of intensity and breadth and depth,” said Jensen, who graduated from Wright State in 1986. “As a group, we seemed much more experienced, had much more practical knowledge, and were more comfortable with a variety of patients.”
Gaw, president of the Ohio Psychological Association, graduated from the SOPP in 1988. “I felt like we had an amazing education and a lot of hands-on experience at the time,” she said. “This was confirmed by what I read while reviewing psychology intern applications for our internship site.”
Among Jensen’s early patients at the Cleveland Clinic were the children of “VIPs” who hailed from other states and countries, initially coming to the clinic for heart surgery or other treatments. The core “gaggle of families” struggling with autism that Jensen cared for grew, eventually leading to a specialized autism center and autism school at the Cleveland Clinic.
Jensen, who typically has a waiting list of six to 12 months, usually handles specialized cases of children with autism and/or related disorders. They are often those who have been previously diagnosed, have had several different diagnoses, and/or require a more intensive evaluation.
Some of them fly in once a year for their annual check-up. Others are seen more often to address the wide range of problems and challenges in this population.
Twenty-five years ago, the incidence of autism was pegged at about one in 5,000. Today, experts estimate that three to six children out of 1,000 will have autism, according to the National Institute of Neurological Disorders and Stroke.
Jensen said the diagnosis has been expanded to include a spectrum of disorders that also affect highly intelligent, high-functioning individuals. But she also believes there are more cases of autism. More recent estimates suggest that the incidence of autism spectrum disorders is approximately 1 percent of children in the United States.
Autism affects all ethnic and socioeconomic groups. Males are four times more likely to have it than females.
One-year-olds with classic autism often won’t look at or acknowledge a person who comes into a room, nor wave or smile when their name is called. By age two or three, they may be flapping their hands, rocking back and forth, spinning around, flipping papers, and staring at little pieces of things.
Children with Asperger’s Disorder often demonstrate a “social disconnect.” They may respond to a question with a comment about a totally unrelated subject and often don’t engage in conversation by asking questions of their questioner. With “little professor” personalities, they can sometimes spew out rivers of information about dinosaurs or other things that interest them.
“I’ve had patients obsessed with all types of topics, from vacuum cleaners to NFL kickers to port-o-potties,” Jensen said. “One boy knew every brand of port-o-potty that existed.”
Jensen said some children with Asperger’s Disorder have the skills to fit in with their peers, especially if they are intellectually capable students in good schools, have good parenting, and avoid the glare of the spotlight.
But children with Asperger’s Disorder are at risk of depression. Between third and fourth grades, in middle school, and during young adulthood are “times when these kids can really feel alone in the world,” Gaw said.
Gaw was first introduced to children with Asperger’s Disorder when she was a staff psychologist in the children’s unit of the state hospital in Madison, Wisconsin—a time when the profession was just beginning to more clearly identify the cluster of symptoms as a pervasive developmental disorder.
Wobbly stacks of books, journals, and papers give Gaw’s office a scholarly feel. But a Mrs. Potato Head and an array of other play materials provide children a familiar point around which to interact.
Gaw believes the public needs to be better educated about autism to keep people with Asperger’s Disorder from being labeled as intentionally rude, uninterested, defiant, or intrusive.
Gaw said people with autism are like everyone else in that they they have their own unique personalities.
“They are very compassionate, caring people who don’t naturally have the ability to empathically understand other people,” she said. “They have to work really hard to develop the social cognition skills to effectively understand another person’s perspective and engage with them.”
People with autism also sometimes don’t have the social cognition skills necessary to enable them to reach their full potential in the workplace, Gaw said. For example, people with Asperger’s Disorder do not easily comprehend figures of speech and implications of statements. That can mean miscommunication and misunderstanding.
As a result of appearing socially inept and overreactive, they often get stuck in jobs for which they are overqualified, Gaw said. Their areas of specialized intelligence and skills become their hobbies.
“We need to work harder to more effectively engage these individuals in order to allow them to most meaningfully contribute,” she said.
Scientists aren’t certain exactly what causes autism. But according to research, there is a strong genetic component and the environment may play a part. Researchers have identified a number of genes associated with autism, and studies of people with autism have found irregularities in several regions of the brain.
Jensen believes it will eventually be determined that autism is a neuro-genetic disorder. She said there is no conclusive evidence at this time that autism is caused by something in the environment, in vaccinations, or in food.
One theory on why there are more diagnosed autism cases is that babies with genetic or developmental anomalies who may have died in the past are surviving because of improved pre-natal care.
Another theory, Jensen said, is that high-functioning autistic children weren’t diagnosed in the past, but now that they are adults, some of their children are. Also, she said, some people are having children later in life, which has been shown to increase the risk of having a child with autism.
“I think it’s all of the above,” she said.
Researchers in the Department of Pharmacology and Toxicology at Wright State’s Boonshoft School of Medicine have a track record in studies of autism. The work of Mariana Morris, Ph.D., and David Cool, Ph.D., has focused on the role of the so-called “love hormone”—oxytocin—in autism using human and animal models.
Jensen said early diagnosis is critical in successfully treating children in the autistic spectrum. The child’s pediatrician is usually in the best position to recognize early signs and refer for formal diagnosis.
“Kids with autism tend to develop habits very quickly. If they begin self-stimulatory behaviors—the rocking or spinning—the more they do it, the more they are likely to do it,” Jensen said. “Without early intervention, by age eight you’ve still got new things to teach and a lot of bad habits to undo.”
The Academy of Pediatrics recommends that children be screened for autism beginning at nine months. Jensen said about half of the children who have autism can be diagnosed by 15 to 18 months of age. At two years old, 75 percent can be diagnosed, and by age three, most can be diagnosed.
There is no known cure for autism. Treatment or intervention involves teaching autistic children a range of specific skills through behavioral and cognitive behavioral interventions.
Behavioral skills, such as making eye contact, are taught so the children can behave more appropriately for their ages. They are also taught social cognition skills, such as understanding that their actions cause others to form opinions about them that may not match their intent. Social cognition skills enable people with autism to more easily understand the world around them and conform to conventional expectations at school and in the workplace.
“Behavioral treatment initially teaches them in a very drill-like, repetitive way and then gradually shapes behavior to be more functional,” Jensen said. “It’s very labor intensive.”
Such intervention can involve a team of specialists spending up to 40 hours a week over three years with a child at an annual cost of as much as $70,000. Many insurances don’t cover autism treatment.
Research shows that with such intervention, up to 50 percent of those children can function much like typical kids by age eight, Jensen said. Without it, fewer than 1 percent would get there. And it’s much more difficult, but clearly not impossible, to make progress after around age eight, she said.
Interventions in social cognition skills can begin being taught effectively at preschool ages. The intention is to broaden the child’s perspective from that of literal and goal-driven to that of cognitive flexibility and the enjoyment of companionship within the activities.
People with autism are also starting to use new technologies to develop social skills and venture out of their isolation.
“iPods, robots, and virtual-reality avatars are engaging, predictable, non-threatening, and forgiving,” said Katharina Boser, Ph.D., co-chair of Innovative Tech for Autism, an initiative of the advocacy group Autism Speaks. “These technologies help children with autism build communication skills in a low-risk environment.”
In Xenia, Ohio, workers at Greene Inc.—which is affiliated with the Greene County Board of Developmental Disabilities and provides vocational and habilitation services—have created several rooms designed to help people with autism make progress in life skills and reduce behavior problems.
The Cloud Nine room, for example, features soft colorful lighting, soothing music, an underwater video display, and twinkling, starlike ceiling lights. The Snoezelen room— with its luminescent liquid-filled columns of blue and green bubbles and its ropy tangles of glowing orange and yellow plastic—is designed to soothe and calm by controlled stimulation.
“The interaction in the autism rooms encourages each individual to increase his or her independence,” said Molly McCullough, who is among a handful of Wright State graduates who work at the facility.
Jeanne Turner, adult day services manager, said the autistic clients have made great strides since the rooms were opened in November and that more rooms are planned because of demand.
The public’s understanding of autism is important as autistic children grow into adulthood and increasingly interact with the outside world.
Autism expert Dennis Debbaudt crosses the country giving training seminars to police departments to help officers identify and safely interact with autistic people and avoid misunderstandings that could result in unwarranted use of force.
“You could make a misjudgment and think that they’re high or drunk or having a mental-health episode, none of which would be true,” said Debbaudt, who has authored a book on autism, more than 30 reports, and produced training videos.
Debbaudt said requests for such training are on the rise. He urges officers to make sure their communications to an autistic person are clear and simple, to avoid the use of slang or body language that could be misunderstood, and to minimize noise from sirens or two-way radios that could trigger a fight-or-flight response.
When parents learn that their child has autism, it can be emotionally traumatic, especially in cases of severe autism. Visions of their children leading normal, conventional lives can begin to evaporate.
“There’s a loss,” Jensen said. “You’re now being told that odds are, many of the things you dreamed of for your child are not going to happen. There’s a grieving for what you thought you’d have.”
Some parents wonder if they are to blame, if they did something wrong during pregnancy, for example. Jensen assures them it was nothing they did. And she said there are many support groups, county programs, professionals, and other systems in place to help parents not feel alone.
Jensen said there are also an increasing number of psychiatric medicines that help the symptoms of autism, especially in cases of aggressive behavior or hyperactivity.
“They have made a tremendous difference in the lives of a lot of the kids I see, especially the more severely impaired,” she said.
Gaw said she reassures parents that people with autism can be very successful and productive, have rewarding careers, raise families, and be healthy and happy.
“There isn’t anything hopeless about it.”
An Ocean of Love: One Family’s Triumphs and Tribulations with Autism
A family with three autistic children shares their story of heartbreak, strength, and joy.