Part 9 of Our Award-Winning Series “Our Children’s Health”
When 7-year-old Matthew gets a haircut, one of his parents has to hold his upper body down while the other holds his lower body. He speaks only about five words, and the one he uses here is “No!” The barber has to buzz Matthew’s head, because the process has to go fast. Agitated, Matthew attempts to put his shorn hair back into his head whenever he gets his hands loose. His mother thinks he feels as if his hair is being pulled out of his head. Matthew reacts strongly to sound and touch. He starts to cry as soon as his parents drive the car into the barbershop parking lot, and keeps crying throughout the haircut. But when the shearing is done, he’s fine. He looks in the mirror, plays with his new haircut and admires himself. He’s friendly and happy again, until, of course, there’s a noise or his routine changes. He can spend a day uninterrupted on the Internet or watching Blue’s Clues on TV, and he’s making great progress. While he speaks just a few words—“up,” “juice,” “out,” “pretzels” and “remote”—he reads books out loud and now says “Mommy.”
Oliver, who just turned 5, would cry so hard when he was a baby that he’d stop breathing. It was one of the first signs that something was wrong. After years of intensive therapy, he now runs to his grandpa and hugs him when he visits. Oliver greets his cousin with “Are you ready to rock?” whenever he sees her, because she once said that to him in passing, a year or so ago. He likes only crunchy food and ice cream that is pink. He is obsessed with trains. His mother says that he has microvision and can spot the most miniscule train in a magazine, one that she needs a magnifying glass to see. He lines up all his train videos perfectly on the stairway in his house. He is also a computer whiz. He recently went on the Amtrak website and booked a trip to Santa Fe. Oliver, who operates on overdrive, scampers around his house on tiptoes. He possesses a great sense of humor and a gigantic smile, which creates deep canyons of dimples. Oliver currently repeats everything he hears. He recently began spontaneously telling his mother that he loves her. While he says this at appropriate times, his mother’s not quite sure he knows what he’s saying.
Lorelei, 12, has always been an enigma. Her babbling and speech stopped after her
6-month vaccine, and returned after she was 3. She always “passed” as an average kid to her teachers, falling through the cracks because her testing was always in the “average” range. The fact is, the average score was attained from very high highs and very low lows in developmental testing. Red flags were ignored. Like many girls, she was continuously being misdiagnosed. She doesn’t like to be touched, but craves having her skin brushed with a hairbrush; she has difficulty with pragmatic social speech, and has a hard time making friends. It is impossible for her to remember things or focus her attention. Sometimes she’s on the honor roll, other times she’s failing everything.
At 9, Drew looks like he could be a model. However, his many medications make him a bit chubby. He has a few quirks: He likes to wear as many clothes as he can pile on, and he likes to eat—constantly. He started to speak only several years ago and is now probably at a 6-year-old speech level. He exhibits violent behavior by throwing tantrums, running away from his parents, screaming, thrashing, biting, scratching and kicking, and he once tried to drown himself in a pool.
Carl is 14 and he’s considered a genius. Always has been. His thing is dinosaurs. He might even know more about them than some paleontologists. When he was young he was like a little professor, and he read scientific college academic books. He can’t make eye contact, and does not have any close friends. When he speaks to you, his tone is flat, awkward, often inappropriate, and in your face.
Susan is 6. She has never kissed her parents. She doesn’t speak. She hates being touched. She rocks, flaps her hands and sometimes bangs her head. She is not toilet trained, and sometimes throws her feces. She does not respond to other children. She seems lost in her own world.
These are the children of autism.
And there may be more of them than we thought.
On Feb. 8, the U.S. Centers for Disease Control and Prevention released a stunning report, which stated that the U.S. autism rate in children is about 1 in 150—6.6 per 1,000, up from last year’s study figure of 5.5 in 1,000.
The study, “Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002,” a community report from the Autism and Developmental Disabilities Monitoring (ADDM) Network, was funded by the Centers for Disease Control and Prevention (CDC), part of the U.S. Department of Health and Human Services.
While many autism advocates are thrilled with this validation of what they’ve been claiming for years, they also feel that the study is problematic in many ways. The research was conducted by reviewing medical and school records for 8-year-old children in 14 states, leaving out regions such as New York State that are on the cutting edge of autism diagnostics.
Dr. Marshalyn Yeargin-Allsopp, a neurobiologist and chief of CDC’s autism program, wants to make the study’s parameters very clear: “This is not a nationally representative sample.”
Dr. Maureen Durkin, Ph.D., a University of Wisconsin epidemiologist who led the Wisconsin part of the new CDC report, agrees, saying that the study is not demographically representative of the nation as a whole, but rather only sound for the specific state or county investigated.
One in 150! This elevated rate doesn’t come as a surprise to parents of autistic children, autism advocates and many health professionals, who have, for years, been claiming a higher incidence than reported in the original study; in fact, they believe the rate is even higher than that revealed by these new findings, and is actually closer to the study’s New Jersey number: 1 in 94. But one in 150 is still a terribly disturbing number.
Evelyn Ain is the publisher of Spectrum, a Hicksville-based national magazine about autism and other developmental disabilities, who also writes an occasional column on autism for the Press. She is also Matthew’s mother, and is not impressed with the study, which she calls “too little, too late.” Not mincing words, she calls it “a line of crap.”
AN UNDISCOVERED WORLD
Autism is the fastest-growing, serious developmental disability in the country. It is usually not diagnosed until after age 3, although early intervention is now the key thrust of advocacy groups, and children are being diagnosed years earlier. Many Asperger’s children, especially girls, are not diagnosed properly until their teens.
According to Autism Speaks, an advocacy organization for autism, more children will be diagnosed with autism this year than with AIDS, diabetes and pediatric cancer combined.
It is important to remember that autism is a spectrum of disorders. Just because a child doesn’t have “classic” stereotypical symptoms, like muteness or hand flapping, it doesn’t mean he or she is not on the spectrum.
“No two autistic children are alike,” warns Ain.
Autism spectrum disorders are lifelong neurobiological developmental disabilities. The behaviors might run from mild to extreme, but there are several consistently associated with autism, and they fall into three basic categories: interpersonal relationships; speech problems; and repetitive, ritualistic behavior.
Behaviors may differ widely among such children: For instance, autistic children might be nonverbal, or they might be extremely talkative. They might have trouble relating to others, but sometimes they can be very social. They might have an aversion to affection, or they might smother a parent in kisses. They might not play pretend games, or they can get lost in imaginary play. Some might have terrible tantrums, while others are docile.
Some symptoms, though, are common among children with ASDs: They often avoid eye contact, have difficulty comprehending other people’s emotions, and have strong sensory reactions and might not like being touched, or being in a room with loud sounds. Even family and friends gently singing “Happy Birthday” can send them into a hands-over-ears panic. Despite common belief, they might be very interested in human contact, but may not know how to interact appropriately. They might repeat or echo words and exhibit repetitive actions. When they want an object, they might not point to it or won’t look in the direction someone else is pointing. They often have difficulty with change in routine, lose skills they once had, and find an interest that becomes obsessive. Children on the autism spectrum crave self-stimulation (“stimming”) such as rocking, hand-flapping, making unusual noises, repeating words and toe-walking. It is also believed that gastrointestinal problems are connected to autism.
In its “First Signs” public awareness campaign of 2004, the CDC provided warning signs:
• No big smiles or other warm, joyful expressions by 6 months or thereafter
• No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months or thereafter
• No babbling by 12 months
• No back-and-forth gestures, such as pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No two-word meaningful phrases (without imitating or repeating) by 24 months
• Any loss of speech or babbling or social skills at any age
Again, it is important to note that these are just potential warning signs. A child can exhibit all of these behaviors or one—or completely opposite ones, as in the case of early high-level speech for kids with Asperger’s syndrome. It’s a spectrum—your child could have a completely unique set of symptoms.
Newly diagnosed children include a broader definition of the autism spectrum, including those who are higher functioning, or have milder symptoms or PDD-NOS (pervasive developmental disorder, not otherwise specified), which has become a catch-all for hard-to-diagnose, atypical children like Lorelei.
PDD-NOS is one of the five disorders on the PDD spectrum, which also include classic autism, Asperger’s syndrome and two severe genetic developmental disorders, childhood disintegrative disorder and Rett’s disorder.
For many years, autistic children were stereotyped as having Susan’s symptoms, perceived as rocking, silent head bangers. Now, there are children who are diagnosed as being on the autism spectrum (and a wide spectrum it is) who would appear “normal” to most outsiders.
It could be said that no other disorder has grown so fast in awareness as autism. It is a commonly held view that parents of autistic children sometimes know more about the disorder than their doctors. And those parents began to spread the news, take control of their children’s educational needs and raise money for research into the possible cause factors: genetic, environmental and vaccines.
Robert Krakow, of Lake Success, is a former member of the National Autism Association board of directors and a civil and criminal lawyer who specializes in vaccine injury litigation. He points out that the states covered in the CDC study that had the highest incidences of ASDs, such as New Jersey, were the states with the highest childhood vaccination rates. Dr. Sydney Pettygrove, Ph.D., an epidemiologist and
co-investigator on the Arizona study, suggests that maybe parents with autistic children moved to states like New Jersey for better services. CDC’s Yeargin-Allsopp says the higher rate can be explained because New Jersey has “more information in their records.”
And as for the cause, theories range dramatically: Experts such as Dr. Jeff Bradstreet, founder of the International Child Development Resource Center in Florida, say it’s medical; organizations like LI-based Grassroots Environmental Education blame environmental factors; and others, like Patty Romanowski Bashe, M.S. Ed., an expert on Asperger syndrome and co-author of The OASIS Guide to Asperger Syndrome, say it’s mainly genetically based.
Autism, as prevalent as it is, is still the subject of many debates. There are even some experts, like Dr. Bradstreet, who don’t even think autism is a single disorder, but rather “autisms.” Perhaps autism is just a cluster of disorders such as sensory integration disorder (SID), obsessive-compulsive disorder (OCD), auditory processing disorder (APD), attention deficit hyperactivity disorder (AD/HD), etc.
While most professionals use the DSM-IV-TR (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) as a diagnostic guide, a growing number of parents of autistic children and experts in the field say the DSM’s criteria is immaterial.
“The DSM is totally irrelevant,” says Krakow. “It’s a classifications system that doesn’t work.” The ever-changing criteria in the DSM were determined by committee, as a guide, a way to rule out disorders. But that’s not good enough for advocates like Krakow.
“You can come up with a different definition at any point,” he says. “Look at what they did with homosexuality. Their criteria just suddenly changed.”
Part of the diagnostic mystery is that there are no medical tests for autism. A diagnosis comes from empirical evidence such as clinical observations and family interviews. A developmental history is taken, speech and language are evaluated, psychological testing is given and diagnostic tests for autism are performed.
But if you have any concerns about your child’s development, experts advise, get them help as early as possible.
THE STUDY
With so many children afflicted with ASDs, activists like Krakow can feel vindicated by the CDC’s new study, considering that they thought of the CDC as one of their most resistant adversaries.
“By 2111, it is believed that the number of children diagnosed with autism spectrum disorders will be 1 in 7,” declares Spectrum magazine’s Ain.
“This was not a fully accurate study,” she argues. “Where’s California, Texas, Florida and New York? They couldn’t count those states because it would have brought the number to 1 in 90, or worse. It would have been too shocking.”
Dr. Durkin says those states weren’t included because “[they] had different methods of autism surveillance,” but she believes that the rates for those states were “similar” to the CDC’s results.
Dr. Yeargin-Allsopp says that sites were chosen in a “competitive process, by a review panel.”
There’s good reason to believe that these current revised numbers don’t accurately reflect the actual high incidence of autism. Foremost, the studies were conducted in 2000 and 2002—years prior to the burst of awareness that has significantly raised autism spectrum diagnoses. In fact, it was in 2004 that the CDC’s “Autism A.L.A.R.M.” report was sent out to all pediatricians. There was a big push then toward spreading the word through its “Learn the Signs. Act Early” and “First Signs” public education efforts. So it is easy to imagine how exponentially high the rise of autism grew after the current CDC study’s completion.
Yeargin-Allsopp does have encouraging news: CDC researchers have already collected data for 2004 and are starting to collect data for 2006.
“We’re moving forward,” she says.
“It’s about time someone finally did a broader, literal ‘head count,’” says Bashe, of this study. But, she warns, check carefully how a study gathers its statistics.
“Remember, when you’re looking at school records or other official counts [as they did in the CDC study], you’re seeing only the children whose parents, doctors or teachers referred them for evaluation,” she explains. “Then from that group, you’re certainly ‘losing’ some kids, because either their parents didn’t want the diagnosis, evaluators are reluctant to give a diagnosis at a certain age and want to ‘wait and see,’ or parents refused to have them placed in appropriate, nonmainstream school settings. Even if a child has a diagnosis, not every school district special education committee will classify them under autism; they might choose a classification like Other Health Impaired (OHI) or something else.”
Durkin agrees, claiming that the Wisconsin numbers might be higher for just the reasons Bashe states.
“We were not able to review educational records [in Wisconsin],” Durkin says. “In previous research in Atlanta, 40 percent of the autism cases were identified only through educational records.”
Because some areas had different types of records available than others, Yeargin-Allsopp admits, “It was like comparing apples to apples and apples to oranges,” in some cases.
“We believe it is possible that the rates are, in fact, higher,” says Dr. Ellen Giarelli, a co-investigator of the Pennsylvania study. “This belief is based on not being able to review the records of all children in the study area who were eligible for such a review.”
Even according to the CDC, the numbers of children receiving services for autism can’t be accurately calculated, because some children receive services for a specific need, like speech therapy, and do not have an official autism classification.
Whether the rate is 1 in 150, 1 in 90 or 1 in 7, this increase in the number of children with autism is still a serious situation that needs to be addressed. And for a disorder found in such a large part of our vulnerable population, it is surprising that there is such disagreement as to its etiology, and whether the numbers are growing, or just a result of refined methods of diagnosis.
“For some of us, this research study confirms what we already know,” says Krakow. “The shockingly high numbers are going up in ways that indicate that the rate is truly rising, despite the fact that there is great debate on the theory that this is merely better detection, diagnosis and awareness.
“For five years I tried to tell everyone the numbers were wrong,” says Krakow. “We think the numbers, however shocking they are now, are even higher. We’ve always believed it was an epidemic. It started in the ’80s, rapidly increased in the ’90s, and the CDC always tried to shade it. They have not done careful ascertainments.”
Dr. Pettygrove stops short at calling this an epidemic, because an epidemic occurs, he says, when “a condition is significantly higher [than] what you would expect based on previous experience.”
“The problem I see here,” says Pettygrove, “is our ‘previous experience.’ We don’t have data collected in the same, rigorous way for earlier times.” But this CDC study, Pettygrove’s colleague Chris Cunniff says, can provide that “baseline.”
“This is the baseline,” says Yeargin-Allsopp of the study. And that’s good news.
To many autism activists, it is an epidemic. In our area, Krakow, Ain and other experts believe, our local stats are similar to the CDC’s New Jersey study, which claims one in 94, and one in 60 boys.
But even that is surrounded by controversy. Girls are often misdiagnosed, or underdiagnosed, when it comes to neurobiological and behavioral disorders. In fact, girls who suffer from PDD-NOS, Asperger’s and other high-functioning or atypical autism, are often at risk for falling through the cracks.
Pennsylvania co-investigator Giarelli says that the CDC and other organizations are presently investigating “why more boys than girls are diagnosed with ASD.”
WHAT’S NEXT?
Now that the staggering numbers have been released by the CDC, what needs to be done?
Durkin says that the report should have a positive effect.
“I think it will contribute to a national consensus that autism is not an extremely rare condition,” she says, “and that pediatric and educational services need to be enhanced to meet the demand.”
Bashe, who has a 15-year-old son who has Asperger’s, says, “Treat autism as the real, serious, lifelong neurological disorder that it is.
“Pressure school districts to put evidence-based treatment plans and real experts on autism in classrooms and really help these kids to achieve their potential. I am a big fan of ABA [Applied Behavior Analysis] for everyone [Bashe utilizes ABA in early intervention teaching]; there’s room for other approaches as well, but the bedrock foundation must be behavioral. It’s the only approach based on an application of scientific principles of human behavior. Focus on funding on helping children and families deal with the problems they have today.”
“The most shocking aspect of this report,” says Peter Pierri, executive director of Smithtown-based Developmental Disabilities Institute (DDI), “is that the CDC’s analysis also found that delays in diagnosis were all too common—an average of at least a year and a half from the time parents first reported odd speech problems or other social deficits to the time of evaluation and diagnosis. It is frightening that many parents are waiting so long to have their children evaluated.”
While everyone agrees that early diagnosis and intervention are crucial, parents and activists like Ain are very concerned about the future.
“The number in this CDC study is very, very, very bad news,” she says. How are we going to take care of these children? Something has to happen in a major way. Where is the Department of Education? Where is the White House? Where’s our president? The U.S. is ‘helping’ the world, but they’re not helping our kids. We’re talking at least 1 in 150. These children are falling through the cracks, minute by minute. We can’t afford our [autistic] children now. What is going to happen when they are 21? It is going to be one big nightmare.”
“Get to work!” advises Bashe, who believes that getting the child into the proper educational setting is key. “But I mean get to work with the teachers who know what they are doing. Demand results, not just placement. Know that we can all do so much better.
There are many concerns facing families affected by autism. The biggest one currently is what happens when these 1 in 150 children start aging out of their school programs. What happens to them when they become adults?”
The recently passed Combating Autism Act of 2006 might help that, with its $900 million in funding. But Dan Roland, development director of DDI, says it’s where that money is spent that’s important. “Money for research is great, but more money needs to be apportioned for building capacity and programs.”
As autistic children start aging out of school, parents are revisiting their wills and looking into living trusts, to secure their children’s future when they become adults—but now, they need the right programs.
Robert Budd, chief administrative officer of Family Residences and Essential Enterprises, Inc. (FREE), a 30-year-old agency serving “differently-abled” adults in 100 sites on Long Island, has been optimistically waiting for funding for an Asperger’s program for two years.
“I hope this [CDC] study highlights the vast need we’ve been experiencing as a provider of services to [the autistic community],” says Budd. “Anytime facts can substantiate what people in the field are experiencing, it is very powerful. It is a very good step in the right direction.”
Dr. Yeargin-Allsopp is also optimistic about the study, saying that it will lead to “early identification and services for large numbers of children and their families.”
It better be…for Matthew, Oliver, Lorelei, Drew, Carl and Susan and the counted and uncounted children like them.