[Editor’s Note: Yesterday we talked about how behavioral health treatments for autism will be now be covered on the individual market under health reform. This article illustrates the importance of these programs to one family in Pittsburgh. The family’s name has been changed to protect their privacy.]
It was time for Justin Bass to move from the infant room to the toddler room. But his daycare providers didn’t think he was ready. For one thing, he was still eating baby food, and insisted on being spoon-fed.
There were other causes for concern. He had trouble tolerating change. When his mom, Margaret, would pick him up from daycare after her workday as a software engineer, she might need to stop at the store on their way home. But as soon as she took a different turn, Justin would throw a fit and scream.
And though he used to say short words like any 18-month-old, now it was rare to even hear him say “Dada.”
By the time he was two, he was hardly talking at all,” says Mrs. Bass.
She called the pediatrician’s office, but they initially dismissed her concerns, saying, “He’s just a late talker. His brother [two years older] talks for him.”
Mrs. Bass knew there was more to it than that. She kept calling the office until she got the ear of a sympathetic pediatrician, who referred her to the Alliance for Infants and Toddlers and the Children’s Institute. Justin was evaluated by the Alliance, where they matched him with occupational and speech therapy. Mrs. Bass also took him to the Children’s Institute, where they in turn referred her to the child development unit at Children’s Hospital.
Diagnosis: Autism spectrum
The word “autism” hit Mrs. Bass like a punch. She tried to absorb what the Children’s Hospital doctor was saying as he explained that Justin was on the high-functioning end of the range of the autism spectrum disorders, or ASD, which include autistic disorder, Asperger’s disorder syndrome, and pervasive developmental disorder, not otherwise specified (PDD-NOS). Justin was diagnosed with PDD-NOS. It’s less severe than autism, but includes some of the same symptoms, such as poor communication, socialization, or behavioral skills.
ASD is more common in children than diabetes, affecting an estimated 1 in 150 kids. The condition is four times more likely to affect boys than girls.
Autism affects not only the child, but the entire family,” says Dr. Martin Lubetsky, who directs the Center for Autism and Developmental Disorders at Western Psychiatric Institute and Clinic of UPMC Presbyterian Shadyside. “At our center, collaboration with families is an essential component of treatment.”
Margaret Bass was in shock after leaving the doctor’s office. She called her husband, Tom, to tell him, and he came home from work right away.
You walk out of there not knowing what just came at you, and you have no clear direction on which way to go,” she says. But Mrs. Bass forced herself to switch to a practical mindset: “OK, how do we fix this? To sit and cry about it is not going to change anything.”
For the next few months, Justin’s parents searched for answers and assistance wherever they could. They found one therapist, but she left about a year ago. Mrs. Bass calls the departure “a blessing in disguise,” because then she came across the Early Intensive Behavioral Intervention Program at Dr. Lubetsky’s center. “[Their program] was much more structured, and the staff was much better trained,” she says.
Intervention: Tasks and rewards
Peter Alfieri, a behavioral specialist consultant at Western Psychiatric, stacks Legos and asks Justin to do the same. He gets it right and proudly exclaims, “The SAME!”
He beams; Mr. Alfieri and therapist Antonella Curigliano (whom Justin calls “Miss Cinderella”) praise him effusively. Justin turns spontaneously to a visitor to give a high-five. The exercise is repeated several times and Ms. Curigliano records the results: Justin has successfully matched almost all of the patterns.
Therapists accomplish teaching tasks such as stacking blocks, following directions, and identifying colors using discrete trail training, a form of applied behavioral analysis, or ABA.
ABA takes tasks and breaks them down into very short simple pieces. As the child learns, you reward him or her and work up to the next task,” says Dr. Lubetsky.
Ms. Curigliano comes to the Bass home to work with Justin two evenings a week. Another therapist works with Justin at his daycare every morning.
Mr. Alfieri designs the treatment programs that the therapists provide, and checks in twice a month to evaluate progress. Also, the therapists meet quarterly for a review with the parents and a psychologist.
A good working relationship between parents and therapists is key. “Everybody has to be on board with what we’re doing,” says Ms. Curigliano.
Every child is different
One important facet of autism is the profound individuality of the disorder. Dr. Lubetsky explains, “If you’ve seen one child with autism, you’ve only seen one child with autism.”
Diagnosis can only take you so far,” he adds. “Then it is critical to begin interventions to meet the needs of the child.”
Individuals with ASD have different levels of functioning, and it is impossible to place every child into one category,” says Ms. Burkley. “Our … program is designed to serve young children of all levels of functioning while providing an intense level of behavior support that allows them to achieve their individual potentials.”
The key is identifying ASD early.
Early intervention [takes advantage of the] flexibility as the brain is developing,” Dr. Lubetsky says. “Early identification, early intensive treatment, and family involvement will increase the child’s chances of success.”
Where he needs to be
Justin hasn’t always been cooperative with his therapy. “At first, it was like pulling teeth,” says Mr. Alfieri. Justin had problems sharing and trying new things, and he would occasionally act out. For example, if Mr. Alfieri asked Justin to bring him a toy car, Justin would refuse, throw the car across the room, and then run away.
But over time and with patient coaching, Justin has learned to share, follow directions, and communicate better.
Now they continue to work on those areas, as well as language skills like verb tenses and comprehension. The goal is to get Justin to start sentences with phrases like “I need,” “I want,” or “It’s a.”
Says Mr. Alfieri of Justin, “He’s doing very, very well.”
Being able to have [skilled staff members] at the daycare to work with Justin on his social skills has done wonders,” says Mrs. Bass. He now invites other children to play with him. His sunny personality is obvious to anyone who spends time with him.
Myself, his therapists, and the teachers agree that he’s right where he needs to be,” says Mrs. Bass.
The benefits of Justin’s treatment have extended to the rest of his life as well. Now Justin goes to gym class without any support and loves it, says his mom. Far from the solitary, inflexible personality he had as a toddler, he now eagerly is open to new experiences and people.
Recently, he’s enjoyed a visit to Dave and Buster’s — a place that can be overstimulating even to an adult. He’s even gone snowboarding.
Justin’s parents and therapists all think that with the progress he has been making, he is on track to enter kindergarten without the help of an aide — in other words, be “included.”