Understanding autism spectrum disorder

A day spent at St. John of God Community Services provides a glimpse into the breadth and diversity of the autism spectrum.

The first stop on a tour is the agency’s inclusive pre-school and daycare program, Here We Grow. The program uses a ratio of about 30 to 70 of children with special needs to typical children. Of the 25 children in the program this year, eight have an autism spectrum disorder.

Located in Westville Grove, the nonprofit, non-sectarian agency providing educational, therapeutic and vocational programs for people with disabilities, community childcare, inclusive preschool, and grant-funded job services for people with barriers to employment.

In one of the preschool classrooms, children are absorbed in story time. Kristi Koger, a special education teacher with the program, points out the children in the circle with a diagnosis on the spectrum. They are totally indistinguishable from the other children.

One of the boys Koger has identified consistently shoots his hand into the air to answer the teacher’s every question. Koger whispers that the 4-year-old reads at a second grade level. High academic ability is often associated with the upper end of the autism spectrum.

When the class moves into small group activities, another student enters the classroom, returning from a one-on-one therapy session with a personal aide.

This student’s needs are more noticeable. He finishes with the activity before the other children and begins to panic, crying and rolling to the floor. Koger takes the child in her arms and holds him, putting therapeutic pressure on his small body, asking him, “What do you need?” He soon calms and goes with the aide to read a story while the rest of the students finish the activity. The whole episode is over within minutes.

The child’s academic capacity is so great, Koger explains, that he finishes activities twice as quickly as the other students. But when he’s left with nothing to do, he’ll have an episode like the one we’ve just witnessed.

“He was looking for some deep pressure to ground him and calm him,” Koger says. “We learn to recognize the signs of stress in the child and tailor to their needs.”

Parents of children with an autism spectrum disorder can choose between this inclusive preschool environment or a preschool designed specifically for children on the spectrum at St. John of God’s Archbishop Damiano School.

The children in this preschool classroom are mostly non-verbal, another common feature of an autism diagnosis. All have made significant improvements since the beginning of the year, their teacher says.

“The vast majority of children on the spectrum are mildly impacted and would benefit from being in class with their peers,” said the school’s assistant principal Dr. Greg Zink. “After two or three years of early intervention in our preschool, these children are usually able to reintegrate into typical kindergarten in their district.”

Few of the children with special needs in the school’s elementary through high school have an autism spectrum disorder. Many with the diagnosis are integrated into mainstream schools, unless they fall on the severe end of the spectrum and need the additional support of a special school.

Licensed clinical social worker, Mickey Steinitz, has been a school counselor at St. Joseph Pro-Cathedral elementary school in Camden for 14 years through Catholic Charities’ School-Based Family Support Program. During that time she’s worked with many children on the autism spectrum in the typical school setting.

“There are lots of anxiety-based behaviors,” Steinitz said. “A lot of working with them is helping them learn to deal with that anxiety and calm themselves. Giving them routine and structure helps reduce the anxiety.”

Steinitz helps teachers who have children on the spectrum in their classrooms to understand their behaviors and gives them classroom strategies that recognize their unique needs and capitalize on their strengths.

“More than anything it’s a social impairment,” Steinitz said. “In district schools, it usually presents as a kid who’s different, a child who’s very competent academically, but has trouble socially. He may lack a sense of humor, or be withdrawn, or act out in inappropriate ways.”

Autism only began to be defined as a biological disorder of brain development in the 1970s. Asperger’s Syndrome was incorporated under the Autism umbrella in the 1990s (Autism Speaks, Inc).

As recently as 2013, the definition expanded to include all subcategories of autism. The disorder is now called Autism Spectrum Disorder because of the wide range of severity within the diagnosis.

All diagnoses are based on two criteria established by the American Psychiatric Association: social communication impairments, and restricted and/or repetitive patterns of behavior. Where an individual falls along the spectrum is determined by his or her severity in these two categories.

“There’s sometimes a hyper-sensitivity to surroundings. To some kids on the spectrum everything seems loud, or they have trouble with bright lights, or they don’t like the way some things feel,” Steinitz said.

“A lot of times kids will have one thing that they’re stuck on — dinosaurs or automobiles, anything. They find an area of interest, they read everything about it, they can tell you amazing facts and figures about it, and it’s really hard to get them to move on from that.”

The tour through St. John of God’s autism-related services ends at the Fulfillment Center, a program for adults with special needs that offers job training and work opportunities.

Few of the adults served by this program are on the autism spectrum. But the ones who are have a more severe diagnosis.

The workshop, where adults engage in contracted work activities like packaging products or shredding documents, can be a noisy place. Specifically with individuals on the spectrum in mind, the program transformed a former break room into a sanctuary for individuals with a sensitivity to sensory input.

The room is dark until, turning a corner, you enter a space full of gently pulsating lights. Colored light fixtures — a floor lamp with long green tentacles, an electricity lamp glowing purple, a spinning ball with pinpoints of colored light — provide visual sensory input. The noise from the workshop outside is cut off and those who take breaks there have access to radios that provide controlled sound.

One of the adults in the program who has an autism spectrum disorder is rocking herself, humming loudly, and listening to her radio in the sensory room. She inspired the room and retreats here often.

More adult programs specific to autism are needed in the state of New Jersey, Dr. Zink says. Early intervention can be beneficial for children diagnosed at a young age. The Autism Society estimates that the cost of lifelong care can be reduced by two thirds with early diagnosis and intervention.

But for adults with a severe autism spectrum disorder, extensive therapy is needed, and programs designed for adults with autism spectrum disorders are few.

The benefits of the increased understanding of autism seem obvious in the integrated preschool classroom. Earlier in the morning, one child re-entered the classroom after a one-on-one therapy session. She is non-verbal and requires an aide at all times.

But for this child, early intervention began at age 3. She is now in her second year of the program, and Koger remarks with pride that she started playing with the other children this year.

After she enters the classroom, Koger picks her up, holding her on her hip, and spins in a circle. The sensory input, she explains later, helps the child facilitate the transition from one activity to the next.

Although the child doesn’t say anything, the broad smile — on both faces — speaks volumes.

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The highest autism rate in the country

Rates of autism spectrum disorder occurrence have increased every year since 2000, with New Jersey consistently reporting a rate higher than the national average (Autism New Jersey). Prevalence of autism in U.S. children increased by 119.4 percent from 2000 to 2010 (Autism Society).

New Jersey currently has the highest autism rate in the country. According to a 2014 report by the Centers for Disease Control (CDC), one in every 45 children in New Jersey has an autism spectrum disorder, compared to a national rate of one in every 68 children.

“No single factor can explain why more children are being identified with [Autism Spectrum Disorders], although a combination of genetic and environmental factors play a role. In addition, some of the increase in the rates … may be due to: changes in the diagnosis and treatment, greater awareness, and better record keeping,” according to the website of Autism New Jersey, a statewide network of parents and professionals dealing with autism.