A child with autism finds his place in community

As an infant, John Rubens hit all the expected growth milestones parents use to chart development. There was little indication early on that he could
have a genetic disorder that impairs language and social development.

But when it came time for the communication piece of John’s development to unfold – it just didn’t happen.

“We definitely noticed a delay in speech,” said John’s mother, Kathleen Rubens. “And he wouldn’t look at us for any length of time. When we called his name, he didn’t respond. It seemed like he wasn’t hearing or understanding us.”

The way John played with toys also was different than how Kathleen’s two older children had played at the same age.

“He was very focused on parts of toys, like the wheels of the car. He wasn’t interested in the whole car or moving the car around on a pretend street.”

John Rubens was 2 1/2 years old when he was diagnosed with autism.

Today, like most 7 year olds, John can ride a bike and tell time. This year he played T-ball for the first time. His path to these skills may have been more circuitous and hard-fought than other kids, but learn he does.

Mills-Peninsula speech and language pathologist Mark Hutton started working with John when he was 3 years old. One of the first goals was to develop his use of language and expand his vocabulary.

“We worked on forming sentences, answering questions and conversational turn-taking,” Hutton says.

How to sustain attention on a single task and transitioning between tasks were also part of John’s early treatment.

The earlier treatment intervention starts, the better, according to Mills-Peninsula neuropsychologist Leslie Hall, Ph.D.

“A lot can be done for children with autism. The skills that it impairs can be taught, depending on the severity of the disorder,” she said.

Behavioral training and speech therapy help a child develop social skills, language and how to read other people’s emotions. Behavioral treatments include a lot of repetition, reinforcement and modeling of desired behaviors. Occupational and physical therapy can counteract poorly developed motor skills and aid in body awareness.

John receives speech and occupational therapy at Mills Health Center, and he also works with a behavioral therapist from a private practice.

The therapies try to fit to the way people with autistic disorders process information, Dr. Hall says.

“They have the cognitive capacity to learn, but it has to be in the modality that fits the way their brain works,” she says.

As Kathleen Rubens describes it, “it is as if the superhighways of the autistic brain are jammed. People with autism can only go the back roads, which can handle only a limited amount of data.”

This way of processing information means that John learns a new skill, such as changing his shirt, by breaking it down into a series of simple steps.

A whole spectrum of disorders
According to Dr. Hall, if a child has autism disorder, parentsvtypically notice something is amiss in their child’s social development by age two.

“It may be they notice their baby doesn’t make good eye contact or like to be held. Or in some cases, the baby is developing normally then seems to regress,” she said. “The social piece is missing.”

Because autism is a spectrum disorder – meaning that it refers to a group of disorders ranging in severity – different children can have widely diverging symptoms.

In addition to classic autism, other disorders in the autism spectrum include Asperger syndrome, Childhood Disintegrative Disorder and Rett syndrome.

Sometimes the cues indicating a developmental difficulty such as autism can be hard to pick up, and other times there is more obvious impairment.

Rather than just one isolated behavior, autism typically is identified by three hallmarks, Dr. Hall says. Noticeable social impairment, impairments in communication (which may include delay or lack of development of verbal and non-verbal communication) and restricted interest, in which a child is prone to be hyper-focused on specific objects or parts of objects, such as John Rubens’ early fascination with the wheels of his toy car.

But an autistic disorder may be more difficult to recognize in a case where a child has normal language skills, but shows restricted interests. That child might be on the spectrum, Dr. Hall says.

“If parents have concerns, they should talk with their pediatrician first,” Dr. Hall says. “Your doctor can run through a check list to decide if further assessment is needed.”

If a pediatrician does refer a child for further screening, a neuropsychologist will thoroughly review the child’s developmental and medical history, interview parents and take into account information provided by teachers and speech therapists.

“Then we do cognitive testing to look at intellectual functioning, language functioning and other cognitive functioning such as problem solving,” Dr. Hall says.

Building the future, one skill at a time
Today, John continues to work with speech therapist Mark Hutton to develop conversation skills, such as waiting for the other person to respond, giving appropriate responses and asking questions.

“These skills can be very difficult for some people with autism,” Hutton says.

John has had numerous successes during treatment, according to Hutton, and just recently showed a small triumph resulting from an accumulation of therapies.

“He started giving really good eye contact and initiating conversation,” Hutton said. “John’s becoming a player in the community role.”

With more of these victories to come, John’s future looks bright. In the fall he plans to attend a regular second grade class with an aide.

“After much therapy focused on behaviors and motor skills, autistic kids can become adults who function very well, live independently and hold jobs,” Dr. Hall said.

“Our final goal is to have John function optimally at school, with friends and in the community,” Hutton says.

Kathleen said her son’s come a long way in recent months. “We’ve seen an amazing amount of growth in John’s development – his ability to communicate, to learn at school, to socialize and to just have fun,” she said.