NEW JERSEY

Seeing the autism spectrum through the lens of hope

Pamela MacKenzie
@pammackenziemcj
  • New Jersey has the highest rate of autism in the country, but it also has some of the best resources to help families meet the needs of autistic children.
  • Applied behavior analysis and other techniques are proving very effective in teaching children at every range of the spectrum of disorders called autism.
  • When schools and parents work together to develop appropriate strategies to teach students effectively, many children can be mainstreamed in the public education system.
  • Autistic children may have multiple health issues or multiple disabilities. Hospitals such as Children’s Specialized Hospital and school systems such as the Sayreville School District are addressing these multiple needs.

Honey and Emanuel Bermeo knew something was wrong when their daughter, Hannah, then only 2 years old, would wake up when everyone else was asleep.

“She was active and happy when no one was there,” Honey Bermeo said.

Hannah’s twin brother, James, did not show any of her symptoms. And when he would try to play with her, she would focus on a toy instead. Hannah also sometimes grew frustrated and had trouble communicating. It was a very difficult time, Honey Bermeo said, and when Hannah was three, she and her husband began looking for professional assistance.

The Morris County residents found hope and treatment for their daughter at the Bedminster-based Somerset Hills Learning Institute, which treats children diagnosed with Autistic Spectrum Disorder (ADS). The institute uses applied behavior analysis (ABA) developed at the Child Development Institute in Princeton.

Their story is shared with many families in New Jersey. According to Children’s Specialized Hospital, New Jersey has the highest rate of autism in the country, with one of every 45 children diagnosed with ADS.

But Dr. Richard Labbe, superintendent of schools in Sayreville, said parents must be careful in drawing any conclusions from that figure.

“I know many families who have moved to New Jersey from other countries because of the high quality of treatment we have for autism in this state,” he said.

Autism is a spectrum of brain disorders that may involve impairment in vocalizing and/or socializing, as well as repetitive behaviors, according to the national organization Autism Speaks. For many years, there were separate diagnoses for some of the forms of autism, but in 2013, they were all grouped together under the umbrella title Autistic Spectrum Disorder. Previously, there had been several subgroups of diagnoses, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder — not otherwise specified (PDD-NOS) and Asperger syndrome.

“ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art,” says the Autism Speaks website.

Experts agree that the sooner a child is diagnosed with autism, the better the chances for effective treatment, and symptoms become evident between the ages of two and four. There are a growing number of resources available to help parents of autistic children not only cope but actually improve their family’s quality of life with strategies for behavior modification. These resources include hospitals, agencies, private schools or public schools.

Dr. Kevin Brothers, the founder and director of the Somerset Hills Learning Institute, has worked with autistic children using ABA for more than 30 years. The staff reward children for good behavior and teach them in incremental steps, using methods that the children understand. They also coach the parents to be the teachers that their autistic children need.

“Parent’s attention is gold,” Brothers said. “If you give it away for nothing, that’s what you get — nothing. But give a child attention for being good, and you’ll see results. For example, you see the child sitting quietly watching television, and you think, ‘oh, now I can get something done.’ But as soon as the child sees you working and wants your attention, the child will act up because they know that will get you. So instead, you go to the child when they’re doing something good, and you say, ‘I am so proud of you for being quiet and watching television. And if you can do that for another 10 minutes, I’ll come back and we’ll do something special together.’ ”

Honey Bermeo said Hannah resisted going to school at first, but by the second week, she’d be going to the garage, showing that she wanted to go to school. She has continued make progress and is still going to the Somerset Hills Learning Institute at age 14.

Another method the school taught the Bermeos that has worked well with Hannah is storyboarding.

“Hannah would get frustrated when she didn’t know what was going to happen, and she’d act out,” Honey said. “So we began using storyboards so she would know what would happen when we were going to do something. She is much calmer now.”

In fact, Hannah was able to complete her first communion with storyboarding. The technique also has made it possible to go out in public to restaurants and the theaters. And now, she is in an equestrian program.

Autistic children don’t generalize skills well, Brothers said. But when parents and schools can break down activities into small steps and explain each step, they can make progress. This technique also works with vocalization.

“We will never say a child is ‘mute,’ ” Brothers said. “At this school, every child who isn’t speaking when they come here has learned to speak or communicate functionally. They may not be speaking in complete sentences, but they can communicate.”

Early-intervention programs

The Somerset Hills Learning Institute takes children as soon as they are diagnosed, which is usually age 2 or 3, but can be younger. Older children also are admitted, often referred by a public school system. Many other organizations also start with children at 2 or 3 because experience has shown that the sooner the intervention, the more effective it can be.

The Edison-based Lakeview School, run by the Cerebral Palsy Association of Middlesex County New Jersey Institute for Disabilities, educates children with many disabilities. For autistic children ages 2 to 4, it has an eight-week Jump Start program, under the direction of Dr. Barbie Zimmerman Bier, a pediatrician who specializes in this field. The Jump Start program meets twice a week to give the parents a foundation for using ABA and the children a foundation for learning. Pediatrician Dr. Nimisha Shukla of Edison said her twin teenage daughters, Janvi and Neha, have been volunteering in the program as assistants, helping with the scheduling and the data collection.

Neha prepares charts for the individual participants and plotting their data, so parents can see their progress. She also engages with the children as an assistant to the professional staff. She said each child has an individual professional therapist, but in addition to the one-on-one sessions, the children have time together to sing songs, play games and dance around. Using the ABA methods of rewarding for positive behavior, the therapists teach the children to learn important lessons. Rewards might be an opportunity to blow bubbles, a chance to play with a stuffed toy or sometimes a snack.

“The children are very hesitant at the beginning, but later, they do much better,” Neha said.

While the children are in therapy, the parents have informative sessions of their own with doctors and other professionals. The charts that Janvi prepares help the parents to understand what the children are going through, Janvi said. She also said the psychologists work with the parents to foster independence and to show them that their children aren’t stupid.

In addition to charting data about the children’s sessions, Janvi helps to create schedules for the children. Creating a regularized schedule of activities gives the children a sense of structure that helps them integrate the world around them.

The Shuklas said that the Jump Start program is an opportunity to expose the children to different therapies and see what works best for each one. It also helps the parents to see they have a lot of support and they aren’t alone.

“All eight sets of parents meet in the same group. It becomes a support group, it helps a lot,” Dr. Shukla said.

The Shukla twins and their friends organized a concert of Indian music and dance last year that raised thousands of dollars for the Jump Start program, and they hope to do the same in 2016. In the meantime, the girls and their friends perform for civic groups and other venues to raise awareness about autism. For more information about their program, email artspeaksforautism@gmail.com.

Children’s Specialized Hospital, with locations throughout New Jersey, has one of the largest offerings of support and resources for parents and autistic children. Its website, http://www.childrens-specialized.org/Programs-Services/Outpatient-Programs/Autism/Real-Life-Tips.aspx, has 26 video tips to help parents and siblings work effectively with autistic children, everything from diagnosis to taking a vacation.

Dr. Roseann Pagano Pizzi, supervisor of Psychology and ABA Services at Children's Specialized Hospital, Mountainside, has been working with autistic patients for a dozen-plus years. She said the hospital also is committed to early diagnosis and that many autistic children have multiple challenges, including developmental delays in motor coordination and/or speech. While she might work with speech therapy, a developmental physician at the hospital will oversee comprehensive care related to other health issues.

Pizzi said the hospital’s therapy strategies are very family-centered. Her goal is to give families strategies to implement at home.

“Not one size fits all,” she said, but they work to understand what motivates the child and what will encourage him or her to do a preferred behavior by offering rewards such as stickers, or time on an iPad. The staff use pictures and social stories to teach children how to behave in a new situation, similar to storyboarding.

“The pictures have words. They read like a manual. They can be created for any activity,” Pizzi said.

Mainstreaming autistic children

The Somerset Hills Learning Institute receives referrals from public school systems within an hour’s drive of the school. Brothers said about a third of the students learn enough to return back to their public school, most at their grade level or a year behind, and most do not need further special education or support. About 20 percent of those who return to their home school system do need some specialized education, but not at the intensity of services they had before they came to Somerset Hills Learning Institute.

Labbe, superintendent of Sayreville schools, said his school district offers an abundance of services, and that most of its autistic students are in its multiple disabilities program because of their special needs. As the parent of a special needs child himself, he strongly prefers to keep special needs children within the school system as much as possible.

“If we know we can’t provide the services a student needs, we will send that child out of district, but I’m always reluctant to do that. I want the special-needs children to grow up with typically developing peers, to make friends with them. That’s why in our multiple disabilities program, we try to have the special-needs children spend at least 20 percent of their time with typically developing peers,” Labbe said.

Labbe added his school district uses ABA techniques in tandem with verbal techniques developed at Rutgers University, and the combined methodologies work well together.

The Arleth Elementary School in the Parlin section of Sayreville recently had an Autism Fair that showcased its autism program.

About 35 to 40 percent of the Sayreville school district’s instructional budget in goes to special needs education, Labbe estimated, but he stressed this is money well spent.

“Our goal is to proved education so that these children can be self-sufficient, self-determining and independent in this integrated society,” Labbe said.

Brothers agrees that investing in specialized education when autistic children are young will give them the tools they need to succeed in society later. The Somerset Hills Learning Institute website states, “Over the first 10 years of Somerset Hills Learning Institute’s operation, taxpayers paid $9.7 million of the $13 million it cost to deliver our services. By graduating students back to their public schools, we have saved New Jersey taxpayers more than five times their investment — over $50 million.”

Staff Writer Pamela MacKenzie: 908-243-6616; pmackenzie@gannettnj.com.

Resources and contact information

Somerset Hills Learning Institute, Bedminster, 908-719-6400, http://www.somerset-hills.org/

Lakewood School, Edison, 732-549-5580, http://www.cpamc.org/lakeview.htm

Children’s Specialized Hospital has campuses throughout New Jersey. For physicians and clinicians, call 888-CHILDREN. For information about their extensive services related to autism, including a splash page to 26 videos with helpful tips for parents and families with autistic children, go to http://www.childrens-specialized.org/Programs-Services/Outpatient-Programs/Autism/Real-Life-Tips.aspx