Like the puzzle piece that has come to signify autism, parents are trying to piece together lives affected by the disorder. This special report looks at the struggles and the successes behind the crisis through local families’ stories.
‘Hi, I’m Cate."
"Yes, Cate, I know," says Nicole Knepper as she smiles with a sigh. This is the way her vibrant 3-year-old daughter greets her everyday, several times a day. She knows by the time she responds, her daughter may have already retreated back into her own world, a world Knepper is desperately trying to enter—the world of autism.
According to the Centers for Disease Control and Prevention, one in 150 kids like Cate fall somewhere on the autistic spectrum, up from the one in 166 previously reported. It is four times more prevalent in boys.
The number of children with autism in Illinois receiving special education has exploded, from 1,960 to 9,455 in just 10 years, according to the Autism Society of Illinois.
There is no known cause or cure—just a lot of unsubstantiated theories and questions.
Parents with children who have autism say enough with counting the number of people affected. Instead, they say the focus needs to be on answering the who, what and why of autism. And what happens to these kids once they hit adulthood?
Focus too, these parents say, on providing the financial resources to get kids the therapies they need to succeed rather than force frustrated parents to sell their homes, work multiple jobs and shutter retirement plans.
"You think the resources are out there, but even the ones on the books really aren’t," Knepper says. "The media leads you to believe that overnight help is readily available. In reality it can be a long and drawn out process."
The results of Cate’s Early Intervention initial assessment recommended a feeding group to help her with feeding difficulties along with occupational therapy twice a week. But the closest feeding group is in Downers Grove at 9 a.m. on Fridays.
"And as for the occupational therapy twice a week, Early Intervention informed us they did not have an available therapist for Cate and they could not give us a time when they would." The Kneppers were told Cate would have to wait for someone to age out (turn 3). "But Cate can’t wait. She needs therapy right away to gain the full benefit," says Knepper, who hired private therapists until Early Intervention could get her daughter what she needed. "It was very expensive. In just over a month it cost us $2,000. When Early Intervention finally came through with an occupational therapist, they only had an opening for once a week therapy, 40 minutes from our home. This is what we have been asked to settle for."
A case reevaluation in January added the need for additional weekly sessions in developmental therapy and speech therapy along with physical therapy twice a month.
Cate’s story is not unique. She is one of about 24,037 Illinois kids now falling on the spectrum.
According to Christopher Kennedy, legislative director for the Autism Society of Illinois, Illinois is ranked 48—above only Arkansas and Mississippi —in services offered for people with developmental disabilities (2005 State of the States in Developmental Disabilities Report). Kennedy says that is why a $52 million funding bill, Illinois House Bill 2041, has now been introduced to address needs not currently being met. "The funding would serve 3,126 people already waiting for help, allowing them services at home instead of in an institution," says Kennedy. "But that just covers those already on the waiting list, that doesn’t account for the new cases diagnosed since."
The world of autism can be confusing to newcomers. The traits can vary so greatly that there really is no true poster child for the disorder. And, because of the 1987 movie "Rain Man," people associate autism with math and memory whiz Raymond Babbit, who would melt down if he didn’t get his daily dose of "People’s Court."
At least that is what Omaida Figueroa of Chicago thought—until her own son, David, was diagnosed.
David was on target with all gross motor skills but not with any of his language or socialization skills. At age 2, she brought him to Chicago Public Schools to be evaluated for early childhood intervention and even the experts did not recognize that David was autistic. They instead set him up in an early intervention class that did not meet his needs.
Knepper says she didn’t see it coming either. "I had been in the mental health field for 10 years. I have a master’s in professional psychology. I should have known this about my child right way. I ignored the signs." Knepper, now a stay-at-home mom, had been a licensed clinical professional counselor for Therapeutic Day School, a junior high.
"Cate was a happy, easy-going baby, always entertaining herself," Knepper says. "She was affectionate. She could say words, even string a few together." It wasn’t until Knepper started to look closely that she realized there was little eye contact and that the words her daughter was saying were rote phrases. "All of a sudden I realized Cate would talk but never answer a question."
Signs and symptoms
Autistic children lack socialization, communication and language skills to some degree, says Dr. Stanley Greenspan, author of Engaging Autism and renowned expert in the field of autism.
His advice to parents: "Know where your child is in regards to those milestone markers."
Is your baby babbling? Does he make eye contact with you, seek your attention, exchange back and forth smiles? Children with autism have trouble with these skills. They have a tendency to avoid such interaction. They like repetition, whether it is in their play or statements or routine in their environment.
A child with autism may not pretend play, but instead line up or order toys. They sometimes have intense fears about ordinary objects or have difficulty with changes in the environment.
Greenspan says parents can use the DIR approach to help them evaluate their child.
D—Developmental milestones. Is the child meeting all his developmental milestones for emotional, social, intellectual and language?
I—Individual differences. What are the child’s individual differences or biological needs? Do you notice the child avoiding sensory input (sounds, visuals, touching, tastes, smells) or craving it? Children with autism often suffer from Sensory Integration Dysfunction, a physical condition where one’s senses are either over stimulated or under stimulated by their environment.
R—Relationships. How does the child relate to parents, siblings, caregivers, teachers, etc. Which are the relationships the child thrives in and what is special about them?
Early diagnosis is key
Because David was unable to communicate, he was mislabeled as borderline mentally retarded with severe behavior and speech problems. After proper diagnosis, intervention and a lot of one-on-one time, they realized David knew as much as his peers, Figueroa says. But, he was falling quickly behind because he had difficulty communicating.
"While some autistic kids are severely retarded, some are at normal, above normal or are even at genius level intelligence," says Sue Rusco, vice president of Clinical Services for Easter Seals Dupage and Fox Valley Region. Rusco says that autistic kids are often thought to have lower intelligence because they can’t communicate what they know. Added challenges from sensory issues further separate the child.
But with proper diagnosis comes proper therapies and a host of helpful tools. For David, picture cards that enabled him to communicate wants and thoughts worked well. Figueroa says that once David was able to communicate with them a lot of his frustrations and tantrums disappeared.
It’s autism, now what?
Learning your child is autistic can be devastating but it isn’t the end of the world. "You go through all sorts of emotions," says Eric Smith of Grayslake, the father of two autistic sons, Evan, 14, and Dylan, 12. "You start to think selfish thoughts like he won’t ever be star of the football team, he won’t ever fall in love and give me grandchildren."
The guilt sets in. "You start to question yourself," says Knepper. "Is it something I did? Is it that hot dog I had in my third trimester?"
Then real fears set in and you realize you have to change your priorities, Smith says. "You begin to worry about everything. What is life going to be like for them when they grow up? What will happen when we are gone? Who will take care of my child?"
Almost all parents touched by autism learn they will have to become their child’s advocate. To do this, they must become experts.
There are many therapies out there depending on the child’s individual needs. The pediatrician is your first stop. From there you may be referred to an occupational therapist or speech therapist, or both. Together you will become a team of "coaches" for your child. Pay attention to what your child’s therapists do so that you can repeat it throughout the week.
Greenspan says that success for a child with autism rests heavily on parents. In some cases, early intervention and parental involvement can prevent or minimize the full onset of autism.
"But don’t wait," warns Greenspan, "there are things you can do even before you get the formal diagnosis." Greenspan says a lot of time can be lost waiting for evaluations and referrals, and with a young child, months can make difference.
"If you have a child that is staring at a red ball and not interacting with you, you can do one of two things. You can remove the red ball and the child will stop staring at it. However, this will not get the child to interact with you. But if you take that red ball and work with it instead of against it, draw the child’s attention to your face by pulling the ball to it, maybe bounce the ball on your head or nose. Eventually, the child will lose interest in the ball and find interest in you," Greenspan says.
Rhonda Brunett of Carol Stream says her 14-year-old son Jordan has autism, but you’d never know it. "As a toddler, Jordan had difficulty socializing." At play dates, there was very little interaction between Jordan and the other kids and they usually ended early in a meltdown. But Brunett continued to bring him. One day it just clicked, she says. He was playing with the other kids and made it through the whole play date without being removed. "Never give up or put limitations on your child. You can try and fail 5,000 times, but it might be that 5,000th time that works."
Brunett has since authored From Autism to All-Star and joined with special education experts to form the Autism Connection (www.autism2allstar.com), a speaking group that provides workshops and educational talks on autism.
Know the system
"Be a ‘know all’," says Kimberly Maddox of the Autism Society of Illinois. "If you don’t, and you go into a situation [evaluations, Individual Education Program meetings, etc.] it can be traumatic." Maddox says parents need to know what, by law, their child has coming to them. And they should never take no for an answer.
"Underneath every no is a yes—you just have to find it. If you are not getting anywhere with the person you are speaking to ask to talk to someone higher up."
Be careful who you trust, because not everyone will put your child’s needs first. "Parents need to know as much as they can about their child’s rights. A lot of schools will tell you only what they want you to know," says Laura Rhyner, leadership development associate for Designs for Change in Chicago. "When that happens, parents come to us."
There is a lot of information available, but stay with names you can trust. The Autism Society of Illinois (www.autismillinois.org), Easter Seals (www.easterseals.com) and Autism Speaks are the biggies for overall coverage. And don’t underestimate other parents, says Maddox. True experts are made by experience, so join support groups or find other ways to connect.
This is a lifetime disorder, one filled with uncertainty about the children’s future.
"As much as I’ve done all this work for the past 20 years, this isn’t anything compared to the next 20," says Northbrook mom Ellen Bronfeld, whose son Noah has autism. "As we say as a parent with a kid with a disability, we can’t die or we have to pray that we live one day longer."
• Parents can find a complete listing of milestone markers and signs of autism at www.autismspeaks.org.
• Understanding what help your child is entitled to can be confusing. Parents can find answers at www.designsforchange.org or www.ddillinois.gov.
• Autism Society of Illinois is having its third annual Lobby Day on May 16. Hundreds of kids and adults with autism and other developmental disabilities, along with parents, grandparents and friends, are expected to join together at the state capitol in Springfield. Together the organization hopes to gain support for better services and policies. To participate call (888) 691-1270 or go online at www.autismillinois.org.
• Easter Seals Metropolitan Chicago is building a $28 million Therapeutic School and Center for Autism Research in the Illinois Medical District. The Therapeutic School and Center for Autism Research, an 87,000-square-foot custom designed facility, will provide services for kids through adulthood, including an Early Childhood Wing, Computer and Language Center and a multi-sensory room.
Jean Dunning is a mom of four who covers the South and Southwest suburbs of Chicago for Chicago Parent.