Autism has one image: actor Dustin Hoffman in Rain Man.
The movie character was quirky, talkative, brilliant, and inflexibly married to a daily routine. But his symptoms were not typical for most people with autism. Some are talkative; others do not talk at all. Some are affectionate; others do not like to be touched at all. Some repeat what is said to them; others can go on and on about a topic they find interesting.
According to the Centers for Disease Control and Prevention, symptoms of autism vary widely, but all children who have it experience difficulty communicating with others. “No two people with Autism Spectrum Disorders will have the same symptoms,” the CDC says. “A symptom might be mild in one person and severe in another person.”
And the cause is a myriad of guesses and suspicions because no one knows what makes a child develop autism. Parents, doctors, and researchers are skeptical of food additives and preservatives, the relatively high levels of mercury injected with some vaccines, environmental pollutants and, of course, the role of genetics. Any one or all of the above could be the catalyst for autism. Scientists are trying to find the answer.
In the meantime, the number of children with autism keeps growing with a promise: If you don’t know someone with autism, you will soon.
Within the past decade, the number of diagnosed cases of autism rose from 10 to 15 per every 10,000 children to today’s estimated one in 166. Those are not guesstimates. The CDC got the most recent numbers from a Charleston doctor who researched how many 8-year-olds in South Carolina had autism. They mirror what researchers in other states are finding.
As the numbers increased in the past 10 years, so did research and advancements in therapy. However, when this swell of autistic children ages through its teenage years and into adulthood, the responsibilities of caring for them will remain with the parents, who will eventually enter their senior years and need assistance for themselves.
As of now, the state estimates 3,758 people with disabilities, including autism, live with caregivers at least 55 years old. South Carolina offers placement in group homes, but does not have enough beds available to meet demand. Literally, parents are having to die before their kids get placement. And with the steep increase in diagnosed cases of autism, that predicament is likely to grow to an extent the state is nowhere near accommodating.
Caregiver Phil Blevins calls it a looming “tsunami of families needing services.” He is the founder and executive director of Carolina Autism Supported Living Services (CASLS), a nonprofit corporation that operates group homes in Charleston for autistic children and adults throughout the state.
“It’s just going to be a nightmare,” Blevins says. “It’s not just South Carolina, it’s worldwide.”
The Rain Men
While countries like China are just beginning to address the exploding numbers of diagnosed autism cases, the United States is ahead in that its parents, schools, and doctors already are communicating with each other about therapies and care. That care, however, is still sparse and expensive.
Blevins estimates it costs $150 per day to place an autistic child or adult into a group home. That adds up to about $54,000 per year. That money, which could be less for residents that require few services, helps pay for two people to supervise each house at all times. The state allocates money for CASLS to pay its staff more than minimum wage so it can be somewhat selective in hiring, and it appears to be necessary because of the demanding responsibilities as well as the lengthy checks each employee goes through to get hired: national and state criminal background checks as well as a clean driving record. Everything gets rechecked annually.
CASLS has 60 employees. That’s far more than when they welcomed the first autistic child into a CASLS home in January 2002. And even more than what Blevins and his fellow co-workers at the S.C. Department of Disabilities and Special Needs envisioned when they quit their state jobs to start CASLS.
But it wasn’t a hard decision to make. The need for those group homes — the five already open and the sixth one on the way — has been there for years.
Blevins says that point was clearest to him in 2000 when, as a state employee, he was sent to handle a request for services in Awendaw, about 40 miles north of Charleston. Two grandparents were caring for their 15-year-old granddaughter with autism in a small, rural home.
“If she wanted to go to Wal-Mart in the middle of the night, they had to take her or she would beat them up,” Blevins says.
No beds were available to move the teenager into a group home so Blevins was sent to go over a behavior plan with the grandparents. But he knew that wasn’t what they needed. He received several similar cases in the following months, which ultimately led him to open group homes himself rather than watch more families struggle in situations they were incapable of handling.
Today Blevins gets three to four calls each week from parents trying to get their autistic children into a group home. Usually, he steers the parents to other services they didn’t know existed. It’s really not up to him to offer a bed — if one were open — because the state determines who gets the spaces in group homes as they become available. Troubling for Blevins is that he has started to get more calls from people in dire situations like those grandparents he met in 2000 and once again he can do nothing for them. He literally cannot open new homes fast enough.
“We’re kind of back in the same situation as before, and people are still coming,” Blevins says.
Legislators hope to alleviate some of the strain with more money.
The S.C. General Assembly added another $6 million into the state budget for children with developmental disabilities, which includes autism. The money will help pay for at-home therapy and open 500 new beds in group homes.
Currently, the state has to maintain not one, but two waiting lists to get into group homes, says Craig Stoxen, president and CEO of the S.C. Autism Society. One is where everyone puts down their name and waits their turn. The other is for “critical” situations where, for example, a parent has died. Parents who anticipate their children will need a group home in 15 years have already signed up. It really could take that long, Stoxen says. That’s why many parents believe they have to die first.
“That’s the pervasive thought,” Stoxen says. “The waiting list is over 1,000 people.”
The new state money should help shorten the waiting list for a while. But, like Blevins, Stoxen expects demand for group homes to increase as the surge of children diagnosed with autism moves into adulthood.
“We know it’s coming. We’re not preparing for it,” Stoxen says. “Legislators have been kind throughout, but it’s not enough.”
And the costs for therapy and care aren’t going away, either. Insurance companies often do not cover autism or cover it as a “mental disease or illness,” which means they pay for far fewer treatments than doctors often prescribe. A bill before state legislators this spring would have required insurance companies to cover autism, but state representatives and senators opted instead to replace that bill with a $3 million proposal to use state taxes instead of insurance money to ease the costs of therapy and additional daycare levied upon parents of autistic children.
“There’s no entitlement for adult children,” Stoxen says. “You leave school and get on a waiting list.”
It’s not the waiting for some parents; it’s the not knowing.
“Most parents want to know before they die or are not doing well that their child is transitioned into a new home well and is doing well,” Stoxen says. “The providers do the best job they can, but they’re never going to be Mom and Dad.”
Mom and Dad do their best, too, but the symptoms of autism are so varied that it requires a high level of professional attention. Stoxen predicts that 10 or 20 years from now, scientists will find that developmental problems now classified under autism are really 10 or so distinct illnesses with different causes.
The cause of autism remains a mystery for doctors and researchers to solve. While they work to break the code, physicians continue to see a rise in the number of children with autism.
Dr. Shelly Hollstrum, a developmental pediatrician in Columbia, diagnoses autism in one to two children each week. She works part-time, but that still adds up to about 70 new cases of autism each year.
Hollstrum attributes the nationwide increase in autism diagnosis to two factors: doctors are more aware of the milder symptoms of autism that previously were misdiagnosed, and the actual number of autistic children is rising.
She believes a firm number on how often autism was still incorrectly diagnosed 10 years ago will never be available, but if she had to guess based only on her experience, then she estimates about 10 percent would previously have been misclassified as mentally retarded.
What’s so different about how doctors diagnose autism today compared to 1996? Much of the improved diagnosis can be attributed to education and research about autism.
“We really didn’t understand how important modeling was,” Hollstrum says.
Doctors now watch children for reciprocal behavior. For example, does a child mimic behavior of other children or adults? Children with autism likely would not. And doctors look for signs of “joint attention,” such as making eye contact and having an interest in interacting with others. Again, autistic children likely would not. Doctors also look for clues to how well the child is developing compared to other children of the same age. Toddlers with autism are less likely to point their fingers or to hold pretend tea parties than their peers.
Parents may mistake some symptoms for signs of a “well-behaved” child. Other parents may initially notice there’s a problem when their children are not talking or begin losing language skills. Parents also become suspicious when they see “odd behaviors,” such as repetition or unusual fascinations.
Autism is diagnosed in children usually between 18 and 24 months of age, but the sooner the better. Early therapy sessions can reduce symptoms for the rest of a child’s life.
“It’s better to get them in while the brain is still developing,” Hollstrum says. “Overall, if we’re able to diagnose early, about half the children with autism and an intensity of services, by the time they reach first grade, about half of them are able to participate in a first-grade classroom.”
That’s a huge impact, she says, not just on the child, but also on the parents’ finances and on the state because more children can avoid having to go into institutions later in life.
“I want those symptoms to get less and less so they’re really hard to see,” Hollstrum says.
At the same time, some of autism’s symptoms, such as an intense interest in a specific subject or heightened interpretation of things visually, can be life-long benefits for people like inventors or computer specialists. Such is the case with one neuroradiologist whom Hollstrum says not only exceeds in his career, but also has a wife and children.
That’s the type of success children with autism could have with intense therapy, but the services needed to get there are often out of reach.
Parents are spending $50,000 or more per year to pay for the intense therapy prescribed, but Hollstrum says not too many people can afford those services. A high percentage of her patients are on Medicaid. Some state programs, such as the early intervention program Baby Net, provide therapists, but for a relatively short amount of time, Hollstrum says. Autistic children may need up to 25 hours of therapy each week and Baby Net provides only 1 to 2 hours per week. Medicaid may reimburse for 8 to 10 hours.
“We’ve had to be creative,” she says.
Parents who have the time and are able to learn how to do the therapies themselves can help make up for a lack of paid therapy sessions by doing some themselves.
However others, such as single parents or those caring for multiple children, may not have that luxury.
“A lot of parents have difficulties with that for a variety of reasons,” she says, making it harder to get those intense services that autistic children need.
But for those who do get them, Hollstrum sees promising results long-term.
“I expect big improvements,” she says. “There should be a lot fewer kids overall needing to go to institutions.”
That’s for children whose autism is diagnosed today, but thousands of children in South Carolina and more than a million nationwide are already past that window of opportunity where intense therapy would have made great improvements. Those children are heading toward adulthood, some independently, and some still completely dependent upon their parents. Melanie Marquis knows what happens then.
Marquis’s son Ryan recently turned 18 years old. He has autism, is mentally retarded, and diabetic. He cannot work and his health has only worsened since doctors diagnosed his diabetes at the unusually ripe age of 12.
“I can’t leave him ever by himself,” Marquis says. “It seems really a lot to other people, but when you’re used to it you just do it.”
Ryan has qualified for some assistance from the state to pay for personal-care assistants to come to the house. Marquis hired Ryan’s two classroom assistants to fill the job because they know his routine and understand his behavior. If Marquis has to work at the office, then she pays them from her own pocket to babysit. Legally, an adult relative has to be at the home with one of the aides during the time paid by the state. So Marquis sought a flexible job where she could often work from home, and where her employer would understand when Ryan needs her attention.
Marquis is the parent-school partnership coordinator for the S.C. Autism Society. It means she helps parents work with school administrators to get an adequate education for their autistic children.
“Usually they come in because they’re having trouble with the schools or their child’s newly diagnosed,” she says. Most are single parents because the divorce rate among parents of autistic children is 75 to 80 percent, she says.
Fortunately for Ryan, his parents are still married and his father makes good money as an engineer to pay for the therapies and treatments he has needed since doctors at the University of Chicago identified the autism.
“We knew it was a developmental disorder,” Marquis says. “The insurance company looked at it as a mental health issue so they wouldn’t pay for anything.”
The couple paid for college students to come to their home and help Ryan with his therapy. He showed improvement, but then started to lose his language skills and hasn’t gotten them back.
By now, the Marquis have Ryan’s routine down pat. However, they have a problem — their own longevity. They already have put Ryan on the state’s waiting list for a group home because they want him to have time to transition into his new settings before they die. They expect to wait many years. They’re now in their 40s.
At 18, Ryan qualifies for more government services, such as a daycare program and money.
“Now he will get a monthly check for Social Security,” Marquis says. Unlike many adults with autism, Ryan is unable to work.
Parents, schools and governments are trying to figure out how to better prepare children with autism to live more independently as adults.
Until the U.S. government recognized autism in 1991 as a disability covered under federal education law, meaning that public schools had to provide autistic students with an adequate education, children with autism had been spread across a variety of classrooms and institutions. One of those was Erik Drasgow’s classroom at St. Mary’s School for the Deaf in Buffalo, N.Y.
Drasgow’s fascination with linguistics led him to teach deaf students a few years after he graduated college in 1977. He quickly discovered a problem with several students in his class — they weren’t deaf.
“When I opened a bag of chips, they all looked,” Drasgow says.
The students were autistic and, as frequently happens among autistic children, they had not developed language skills. They couldn’t communicate because they were “functionally deaf.” Drasgow saw these students as a mystery he wanted to solve, and so he began studying the illness as he pursued a doctoral degree. He learned effective therapies and the best ways to teach children with autism. Ultimately, he became nationally certified for Applied Behavior Analysis therapy, the most effective method known to teach children with autism.
Today, Drasgow is a professor of education at the University of South Carolina often called upon for advice or training on teaching public school children with autism.
“There’s a huge increase,” Drasgow says. “Schools are really struggling to say how they can accommodate them.”
Public schools are seeing not just spikes in the number of students diagnosed with autism, but also in complaints.
“Autism, right now, is the most highly litigated area of special education,” Drasgow says.
Schools are becoming more proactive in providing adequate education for children with autism, he says, rather than waiting for complaints to be filed when they don’t. This increases the demand for teachers who know how to work with autistic students, and Drasgow says the number of people specialized in autism is relatively small.
However, more and more of Drasgow’s students, who will become teachers themselves, are seeking out information about autistic children. The professor received enough interest that he recently taught a class specifically on autism. The lessons should help his aspiring teachers avoid the pitfalls others have stepped in. For example, autistic children have difficulty communicating and particular trouble interpreting non-verbal communication, which means autistic students might not understand what is expected of them in a classroom. Teachers could interpret that as willful disobedience. The first instinct is to try to get a student’s attention by raising their voices or giving disapproving looks, to no avail. By understanding the symptoms of autism, Drasgow says, teachers can better assess the situation and respond productively.
“Kids with autism do have some characteristics that teachers clearly need to be aware of,” Drasgow says. “For example, kids with autism may not be as eager to get adult approval.” And, he says: “When people do not understand autism, they often think that an individual is aloof and stubborn.”
Ideally, children with autism will get the best care available and succeed into adulthood. But for now, the growing number of autistic children heading toward adulthood will likely remain their parents’ responsibility for a long, long time.
“It is a problem for people who are elderly,” says Kathy Newman, community education coordinator for the Autism Division of the S.C. Department of Disabilities and Special Needs. “That is certainly a problem with all disabilities that we are concerned with.”
The department tracks 27,000 people with disabilities in South Carolina. In Richland County, 322 people have caregivers age 55 or older. In Lexington County, it’s 159. Those numbers, combined with autism’s climb to the third most prevalent childhood disability, points to possible problems for parents who dream of a relaxing retirement. For many, it’s not going to happen.
Advancements in autism research, therapy and education put the dream that doctors like Hollstrum have — of autistic adults living independently and creating the world’s new inventions — closer now than it was a decade ago. However, parents and caregivers say a wave of adults with autism is coming and South Carolina isn’t prepared.
Raising an autistic child in S.C.
Photos by Wendy Pagonis
William Rutland lost his speech at age 2, about the same time doctors told his parents he had autism. At age 3, he enrolled in Richland County School District 2. It made him eligible for state assistance with his prescribed at-home therapy. Now 6, William remains a joy and a heartbreak in the Rutland household in Northeast Richland. Although he brings to surface daily acts of kindness and empathy, raising William also brings a daily frustration because it is the only task his parents do halfway. Even with Duncan Rutland’s salary as a chemist and Myra Rutland’s salary as a paralegal, the couple is unable to provide the therapy William needs to function in society. “This is the hardest thing I have had to do,” Duncan Rutland says, reminded of his father’s adage that anything worth doing is worth doing right. The doctor says William needs 35 to 40 hours of at-home therapy each week on top of the eight hours a day he spends at school. “We’ve never come close to 30 hours a week,” his father says. Right now, William is getting 10 to 12 hours of therapy each week. Through the school system, the state’s Medicaid and various programs help to get necessary therapy for children with autism, but it is not enough.
The state Department of Education teaches children with autism from age 3 to 21. However, that therapy often is in smaller doses than doctors prescribe, sometimes as little as one to two hours a week. Parents, not insurance companies, pay for the rest. That often means hiring college students and therapists willing to work for less than what private companies can pay.
“We basically have to train our own therapists,” Duncan Rutland says. “Finding qualified, motivated people who you are willing to entrust your child with for long periods of time is difficult.” To pay for much of that therapy for their youngest son William, the couple has drained 80 percent of a pre-paid college tuition fund the boy’s grandfather purchased for him six years ago when he was born. The dark-haired boy with big blue eyes is considered “high functioning” in the spectrum of autism disorders, but will require therapy for many years. William shows a lot of promise, but his parents do not have the extra $1,200 a month required to pay for all of the therapy doctors say he needs. “It just doesn’t grow on trees well at my house,” his father says.
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