HEALTH-FITNESS

The faces of autism

Susan Spencer Telegram & Gazette Staff
Melissa Lackey plays with her 3-year-old daughter Theresa in their Grafton home. T&G Staff/Rick Cinclair

Teresa Lackey, chubby-cheeked and ponytailed on the cusp of turning 3, enthusiastically bounces a giant ball across her family's Grafton living room.

Jason Paige Jr., a handsome 2½-year-old from Uxbridge, romps masterfully through a toddler obstacle course.

Five-year-old Grayce O'Neill of Grafton dances into the room clutching miniature Disney princess figures in her hand.

All three look like typical youngsters engrossed in play. But the children and their families face potentially lifelong hurdles grappling with autism, a complex developmental disability that can cause significant social, communication and behavioral challenges. 

One in 68 children is diagnosed with autism, according to the U.S. Centers for Disease Control and Prevention. The broad spectrum of the disorder, ranging from mild social impairment to severe deficits with intellectual disability, makes early diagnosis and individualized treatment critically important — and often daunting to parents, health care providers and school systems that are mandated to provide special education services.

"If you've met one person with autism, you've met one person with autism," said Sue Loring, director of Horace Mann Educational Associates' Autism Resource Central in West Boylston, a family support center supported by the state Department of Developmental Services. "It's always been a difficult thing to define. It's like saying a person has cancer."

This three-part series, "Piecing Together the Puzzle," explores the conundrum of autism in young children, the stage at which it is typically diagnosed and intervention becomes an immediate concern. Today's article looks at the diagnosis of autism spectrum disorder and the predominant therapy. On Thursday we focus on the crucial transition at age 3 from early intervention to school-based special education. Next Sunday, we examine what researchers know about causes of autism and promising trends in medical and behavioral research.

Even the diagnostic criteria for autism can be confusing. Prior to 1980, the Diagnostic and Statistical Manual of Mental Disorders, the bible for psychiatric diagnoses, listed autism symptoms under childhood schizophrenia. In 1994 the spectrum widened vastly to include in addition to autistic disorder, diagnoses for Asperger's syndrome, Rett syndrome, childhood disintegrative disorder and the catch-all pervasive developmental disorder — not otherwise specified.

DSM-5, released in 2013, no longer breaks out Asperger's and other disorders. Instead, autism spectrum disorder is one diagnosis with degrees of severity.

"It's much more common than we used to think. Generally, there's social impairment that's very striking," said William H. Ahearn, director of research at New England Center for Children in Southboro, a private nonprofit school and research institute approved by the state to provide autism education.

Besides problems in social interactions and communication, children with autism tend to have restricted, repeated patterns of behavior or interests. A child might flap his or her hands, repeat words over and over or have abnormally intense fixations on certain toys or rituals. He or she might be over- or undersensitive to sensory inputs such as pain, temperature and light.

"First-time parents don't always recognize this," Mr. Ahearn said. "Their behavior in a social environment is a key factor for autism."

Tara L. Paige, a part-time veterinary assistant, wasn't concerned about her son, Jason's, development except for his aggression toward other children at his toddler gym. He was also obsessed with trucks and although he had language skills, he didn't respond to his name.

"Oh, he's just a boy," Ms. Paige said people would tell her. "But it was more than that."

She took him to the doctor at 18 months and asked about discipline. "It didn't sound like normal toddler behavior," Ms. Paige said her pediatrician told her.

Ms. Paige called UMass Memorial Medical Center to schedule an evaluation. Six months later, at age 2, Jason was diagnosed with autism.

The first warning signs for Teresa Lackey, who turned 3 last week, were that she was terrified of other people at the play group she attended and she was flapping her hands. She would cry for 45 minutes when a stranger came in.

" 'She's just a baby,' is what everybody would say," her mother, Melissa, a pharmacy technician, said.

A therapist from early intervention, a state Department of Public Health-supported program for children from birth to age 3 who are at risk for developmental difficulties, was coming to the home to work with Teresa's twin siblings, who were born prematurely 10 months after Teresa. The therapist suggested an evaluation for Teresa and at 21 months, Teresa was found to be severely autistic.

Teresa and Jason received early intervention services at home from Criterion Child Enrichment, a state-licensed provider with offices in Worcester County. But the critical piece of their autism treatment has been the 28 or more hours a week of home sessions with an Applied Behavior Analysis therapist from the New England Center for Children.

ABA, considered by many to be the gold standard for autism therapy in children, is an intensive, one-on-one approach that breaks behavior down into its components and works with each child to reinforce the necessary skills. The skills are then built upon in broader settings. At the same time, ABA works to reduce behaviors that get in the way of learning. Data on each child's progress are continually recorded and analyzed.

"One reason ABA is such an effective tool is we observe behavior," Mr. Ahearn said. "We watch and determine when they will, when they won't have problem behavior."

Research conducted at the New England Center for Children found that children who received between 20 and 30 hours a week of ABA starting before age 2 performed remarkably well a year later. Senior Program Director Rebecca P.F. MacDonald said that in a follow-up study of children who started ABA at age 1, 91 percent were within range of their typical peers in terms of social and cognitive skills, play, language and fewer interfering behaviors. 

"A lot of those kids have done really, really well when started at 1," Ms. MacDonald said. There were improvements, but more variability among children who started intensive ABA at age 2.

Ms. MacDonald said she's received letters from parents of children who started ABA before they were 2 and now are in regular elementary school classrooms, doing sports and activities.

"It's like an educational pharmaceutical," said New England Center for Children CEO and founder Vincent Strully Jr. "You've got to get it in the right dose every day. It becomes educational medicine."

Ms. Lackey said the 28 or more hours a week of ABA Teresa has received has not only enabled her to acquire skills but maintain skills she's acquired. She said, "She's gone from being a completely nonverbal child to being able to communicate, so far on a limited basis, but if you look at her data, it's phenomenal. The jump is phenomenal."

"They're trying to work with him on control issues," Ms. Paige said about Jason's ABA therapist who comes to their home for 28 hours a week. "I couldn't even tell you where we would have been without ABA."

She added that while Jason didn't have cognitive delays, his behavior made it difficult for him to learn. "It's really tough to do the ABCs and stuff, but now that NECC is in the picture, he's learning it," she said. "I've seen extreme improvements with everything else."

Amy O'Neill said Grayce, who is entering kindergarten, never had ABA services. She received early intervention because she was born with a cleft palate. Ms. O'Neill picked up on the autism symptoms because she recognized them from three of her four older children, who also have autism.

"She only got in integrated preschool (at age 3) because of speech and she wasn't talking," Ms. O'Neill said. "She didn't have a diagnosis then.... In a month and a half I had a pile of results from UMass."

Ms. O'Neill said she requested a meeting with the special education team at Grafton School Department, but was given nothing for autism therapy.

Grafton Special Education Administrator Arnold Lundwall said children coming to preschool at age 3 from early intervention programs are evaluated and the team determines what services the school will provide. "If a child needs it, you get it," he said.

Therein lies a big problem: Children younger than age 3 who are diagnosed with autism are eligible for extensive services, including ABA, based on a licensed developmental specialist's evaluation. But as of the third birthday, the child's development and education become the province of the local school district.

"There's a blurred line between the medical issue and education because this is where education is really health care," said Jacob Lackey, Teresa's father and a network engineer. "The problem I see with the situation is, you can have a health care practitioner say the child needs this and the teacher overrules it."

Next: Transition to school.

Contact Susan Spencer at susan.spencer@telegram.com. Follow her on Twitter @SusanSpencerTG

•Autism spectrum disorders occur in about one of every 68 children and about five times more often in boys — one in 42 boys and one in 189 girls

•A family that has a biologically related relative with an autism spectrum disorder is much more likely to have a child with an autism spectrum disorder than a family without this history.

•Autism is a developmental disorder thought by scientists to have a genetic origin and there are some known environmental contributors to the disorder.

•Over 2 million Americans affected by ASDs.

•Fastest-growing developmental disability

•Growth comparison during the 1990s

- U.S. population increase: 13%

- Disabilities increase: 16%

- Autism increase: 172%

Sources: Centers for Disease Control and Prevention; U.S. Department of Education; Autism Society of America; New England Center for Children

Autism facts