An autism diagnosis sends parents on an anxious search for ways to save their children from closed, mysterious worlds.
They jump at the chance to learn more about scientific breakthroughs, hoping that some day, science will find a way to “fix” their children.
Harvard University scientists propelled those hopes in July with an article published in the journal Science. The study suggests that activating some defective genes in the brain could emulate flipping a light switch and, say, enable communication skills.
The discovery also could reinforce what parents and educators already are doing. Increasingly, they are using repetition and behavioral analysis programs to help children learn such skills as controlling impulses, conversing with classmates or assembling retail displays.
The caveat is that scientists say the genetic defects are unique to each child — a familiar but exhaustive reality for parents who explore highly individual and expensive therapies for their children to apply at home and at school.
Children with autism land on a spectrum, the medical title used to indicate mild to severe symptoms of various developmental disorders. The symptoms range from being unable to use language to communicate to being so high functioning that it’s hard to tell a student has special needs.
Seven-year-old Noah Davis is very high functioning, even participating in gifted programs in Springfield Public School District 186. He has Asperger Syndrome, named after Dr. Hans Asperger and described as a milder form of autism. He remains in general education classrooms, but his parents are seeking a personal aide to help him focus and to free up the classroom teacher.
The parents of Jacob Jankauski, a 12-year-old in Athens, formed their own support team and recruited family friends to obtain training as therapists so they could help Jacob develop his social and motor skills.
And then there’s Ross Brotherton, a 23-year-old who uses his own form of language to communicate. Because he had one of the first autism diagnoses in Taylorville, his parents went from being told they had to put him in an institution to helping teachers create classrooms around his needs each year. Ross now works in the community.
There’s no formula that works for every child on the spectrum. The needs are unique and can be as specific as allowing Jacob Jankauski to jump on a mini trampoline to release energy before returning to class.
But every school district’s policies and responses to special needs also differ. Parents become researchers and advocates, trying to work with school officials to use methods that they believe work best for their children. And they have to do it over and over again every time their children get new teachers, enter new schools or develop new behaviors as they mature into adults.
A growing network of services is connecting parents and experts in regions throughout the state, but limited funds challenge full statewide expansions. At local levels, particularly in downstate Illinois, the ability and willingness to adjust to each new challenge throughout an autistic child’s development also varies as widely as awareness levels everywhere.
Awareness is increasing, but not fast enough. Before 2004, the U.S. Centers for Disease Control and Prevention says autism was believed to occur in up to 5 children per 10,000. Since 2004, the CDC calculates that up to 6 per 1,000 children, or 1 in 166, live with an autism spectrum disorder.
The earlier children are diagnosed, the sooner they can start “interventions” to help them develop physical, social and verbal skills. Yet, much about the disorder is still unknown.
Researchers note that the increasing number of diagnoses reflects a higher level of awareness, but school districts struggle to keep pace.
The Illinois State Board of Education estimates that about 12,000 children diagnosed with autism attended public schools in this state last year, an increase of about 1,000 from a year ago, according to Barbara Sims, principal consultant for the state board. But that doesn’t count the children who participate in special education programs but don’t yet have an autism diagnosis.
More often, teachers are required to attend sessions for some kind of special education training, particularly as more autism students integrate into mainstream classrooms.
“Whereas it used to be special ed teachers didn’t see any children with autism, now every single special ed teacher is going to be working with at least one child with autism,” said Lyn Becker, a special education teacher in Rochester and education advocate in central Illinois. “And statistics show that every regular ed teacher will have a minimum of one child on the spectrum in their classroom. We just have to catch up with that and get these people trained.”
She says in her 20 years of experience, she knows schools aren’t as responsive as they could be. That’s improving, however, she says, and success depends on how parents present information. It also depends on the support systems schools already have in place.
When parents believe a school district can’t satisfy a child’s needs, they often seek help from special education lawyers such as Charles Fox. In state and federal court cases, the Northbrook attorney has concentrated his efforts on special education since 1994. He also is an adjunct instructor at DePaul Law School’s Special Education Advocacy Clinic, which opened this year in Chicago. And he is the father of a son with special needs.
Fox says his clients tend to focus on increasing the one-on-one attention their children get in education programs, especially in the early years after an autism diagnosis. While he says the consensus in autism literature is that children need about 25 hours of one-on-one attention a week to make a real difference, the typical classroom program “doesn’t come anywhere close to 25 hours.” He says so-called early education programs often meet for about half of that time, only some of which is dedicated to one-on-one lessons and evaluations.
When a child with autism enters his or her middle years, Fox says, the family’s focus typically shifts from emphasizing academic skills to life skills, such as taking a shower, cooking a meal or riding a bus.
As children transition into their adult years, he says, parents should help them look for employment, especially jobs that channel their interests and energy to something they like. Self-employment also can allow people with autism to determine their own hours or to work from home.
The Illinois State Board of Education intends for public school districts to teach all children in the least restrictive environments as possible. Most children with any type of disability have individual education plans that address their strengths and weaknesses. Those plans also define classroom modifications for each student.
Students such as Noah Davis in Springfield are considered high-functioning and don’t always have those individual education plans. He remains in the general education classrooms with some protections under federal law regarding discrimination based on disabilities.
His parents, Mike and Jennie Davis of Springfield, continuously combat the assumption that their son is so high functioning that he doesn’t need special services. “He still has a lot of issues that people just don’t see,” his mother says.
He has obsessions of sorts, such as needing to be first in line, avoiding certain smells and requiring that all of his animal toys and drawings have four legs — all of which must be flat to the ground — and straight tails. Anything out of order can trigger a tantrum. Yet, he’s extremely verbal and almost overly social. His characteristics sometimes demand a lot of attention from the classroom teachers.
So Jennie Davis is seeking a personal assistant for her son, but she says he can’t receive a personal aide without the individual education plan that calls for an assistant. There’s also a question about whether he will be included in gifted programming, as she hopes.
While there is no specific path to determine what’s best for each student, the district tries to work with parents, says Leuwania Baker, managing principal of student support who oversees special education services for District 186.
“We know that [parents] are also the children’s first teachers,” she says. “Do we listen? Certainly we listen. They’re part of that team, and that team is putting together the individual educational plan.”
The teams rely on research to find new ways to adjust and accommodate.
“We continue to learn new things all the time, and that’s still happening, especially in the area of autism,” Baker says. “[The autism] label is so broad. There are just so many different pieces that may or may not apply to individual students.”
Other students who have individual education plans can benefit from flexibility in the classroom.
Jacob Jankauski has a mild form of autism. He eagerly tells others, “I’ll be a teenager next year,” and he often repeats phrases that he practiced during therapy sessions.
“I did a good job,” he says, and, “I’ll work some reading and language at junior high next year. And my mom will drive me to school next year. And my mom will drop me off next year.”
He used to not speak at all. That started to change when his parents, Ed and Karen Jankauski, built an entire support network of trained therapists. Jacob now speaks so much that they recently joked about having to bite their tongues not to ask him to be quiet during a long car ride. He also looks in people’s eyes when he talks to them.
While his father says therapy completely changed Jacob’s life, they had to dip into his college savings to pay for it. They also hired an education advocate, costing up to $75 an hour, to ensure Jacob’s classroom activities complement the work he does at home.
Becker, who trained Jacob’s three therapists, says school officials are more likely to listen and to implement families’ proposals when they can provide documentation to show that what they’re doing at home actually works.
The problem, however, is that schools often lack funding and resources to get the type of training that teachers need, inhibiting consistency, she says.
“I think there’s a real attempt to have some type of continuity, but I will say it’s probably a downfall. And that’s a communication problem. It takes time and effort and energy for different teams to get together and communicate, and that time is just not available. It’s crucial to the development of these children, but it’s very hard to do.”
State officials recognize that some school districts are more malleable than others.
“There are discrepancies with regards to the services that are available across the state,” says Elizabeth Hanselman, assistant superintendent for special education and support services for the State Board of Education. “To say as a state that we’ve regulated X, Y and Z for every program, there’s a lot of local control.”
Hanselman says Illinois is one of six states receiving a five-year federal grant to establish regional teams designed to improve continuity. They provide training, technical assistance and coaching to educators across the state.
During the past decade, Illinois also has participated in a national alliance called the Autism Training and Technical Assistance Project. Ten years ago, the state received about $60,000 in federal funds for the project. The grant amount jumped to $724,000 this fiscal year.
But federal funding still can’t meet the demand. Sims says that although the program trained 472 teams between 1998 and 2004, that doesn’t come close to helping all of the nearly 4,000 public schools across the state.
“To be honest, we couldn’t even keep up with the growth and identification.”
Training alone also doesn’t solve the problem. The minute teachers return from training sessions and a child has an unexplainable meltdown in the classroom, the teachers often revert to a past practice, even if it’s the wrong approach, Sims says.
“Research shows us that you can train people for as long as you want to. You can’t change what they do with kids unless you provide ongoing support and coaching for them.”
So in 2005, the state took a new approach and entered into a partnership with Illinois State University in Normal to offer free online training for anyone, as well as a graduate level course for people working on their master’s degrees in special education. Various districts throughout the state offer follow-up courses, and staff from the Illinois Autism Training and Technical Assistance Project work monthly with each local team.
“So as they get farther and farther away from this training and they hit situations they’re not sure how to deal with, we have our coaches available to work with them to help work out solutions,” Sims says.
Even more intensive support is available from the?Illinois Autism Training and Technical Assistance Project’s Focus Family Support program, but limited staffing prevents it from serving more than 40 to 45 families a year, according to Sims. About 120 families are on a waiting list.
Families meet with experts and talk about everything, including the way having a child with autism affects their marriages. Then the families select a support team, usually involving neighbors, other family members, community providers and school officials. They all endure intense training that can last as long as a year, finishing when they produce a plan for how to support the child in school, in the community and at home.
“We have found that the success rate is way higher when the family is making the calls,” Sims says.
This time, state funding can’t keep up with the demand. The State Board of Education requested $450,000 this fiscal year to wipe out the waiting list, but funding lingers at about $100,000.
Until the program can hire more full-time employees, Sims says it uses other state services to supplement the guidance parents already receive.
“That isn’t a perfect solution, I’ll grant you, but it’s what we have right now.”
In the meantime, a network of state services for families affected by autism continues to expand, offering various resources for parents as they make their way along the mysterious autism spectrum.
There’s still hope
Greg and Marla Brotherton of Taylorville navigated uncharted waters when their son Ross was one of the first children diagnosed with autism in the area.
That was 23 years ago, when they didn’t know what autism meant and were shocked when doctors told them to start looking into institutions. Only one year prior, Ross had been saying, “Mama” and “Daddy” and wanted to sit in their laps for them to read books.
“We tried just about everything, especially at first,” Greg Brotherton says. “I heard one time that some boy swam with the dolphins, and that made him better. We didn’t quite go that far, but we tried a lot of things.”
The family worked with local schools to build each new classroom around Ross’ needs.
Now Ross works in a local health clinic, assembling parts of a plastic spool and attending training to build his social skills.
Although the Brothertons say they couldn’t be happier with the way the community has adapted to their needs, Lyn Becker, an education advocate with 20 years of experience in special education, says the state often falls behind in assisting adults.
“When it comes to kids and young adults leaving high school and moving into the workforce, it’s really sad. There are very few supports out there.”
One program designed to help young adults transition into life after school is an autism-specific institute for children of all ages, the Hope Institute for Children and Families in Springfield. The campus includes residential facilities where students can live while attending school.
The private institute opened more than 50 years ago and accepts children who can’t succeed in their local public schools because they need a “critical mass of services,” says Mark Schmidt, chief communications officer for the institute.
“We take the toughest cases.”
About 70 percent of the students have an autism disorder.
The school uses fluorescent light bulbs that are less likely to overload hyperactive senses. Each classroom has its own playground. The halls are color-coded to help students navigate the building — yellow walls, for instance, lead to the school buses. Signs with arrows and pictures tell them which way to go to play basketball in the gym.
“It’s all about flexibility,” Schmidt says.
Some students need residential care for the rest of their lives. Others can eventually return to their home school districts.
All can attend Hope up to age 22.
“For those children, it is preparing them for life after Hope. That might be life at a group home. It might be life living with family members and holding down a job in a community. And we place a lot of emphasis on assessing the needs and the potential of each child.”
Occupational therapy prepares them for potential employment.
They grow plants in a greenhouse on campus and sell the products at a local farmer’s market. Job coaches teach them routine tasks such as operating a machine or putting pegs in holes. They work their way up to stocking shelves at a grocery store, working a cash register or serving meals at a restaurant.
They also practice cooking, eating dinner at the table and making the bed or doing the laundry.
The key from age 14 and beyond is to be as independent as possible, says Cliff Hathaway, principal of the Hope School Therapeutic Learning Center. “We lay the foundation here,” he says, and help students take step by step into adulthood.
The institute has come a long way from being financially strapped and programmatically adrift five years ago, according to Schmidt. By next year, the institute expects to achieve all of its goals of opening a one-stop shop for medical services, expanding existing facilities, opening an autism school in Chicago and creating an autism network.
The network started with a state-sponsored project created by the General Assembly in 2003. Money trickles down from the Illinois Department of Human Services, filters through the Hope Institute and disperses among a variety of community providers belonging to the Autism Program.
Known as TAP and headquartered in Springfield, the network includes 12 centers throughout the state and connects doctors, educators, counselors and families.
The catch is that the program enters into the state “budget battle” every year, but Schmidt says the community partners that make the decisions don’t reinvent the wheel. They use the state grants to work with universities and other organizations so they can establish more regional centers across the state.
The ultimate goal is to find ways to help students reach their highest potential, recognizing that each child on the spectrum is unique.
Illinois Issues, September 2008
