Its exact cause is unknown. There are treatments, but no cure. It affects hundreds of thousands of children — one out of every 150 — and many now consider it a national epidemic.
Autism is mystifying and maddening to the medical community, public health officials and parents because it is not characterized by one single problem. It is a severe developmental disorder that makes children seem cut off from the world around them. They often cannot communicate either verbally or nonverbally. They are unable to handle social situations. Their brains cannot process information in a typical way.
Many autism experts — both professionals and parents — are finding that despite the alarming numbers, there is reason for hope. New research and treatments are allowing more and more children to be rescued from autism’s grasp.
Samia Mohazzabfar of North Seattle remembers the day she realized there was definitely something going on with her 2-year-old son. Of course, she had wondered why Kauvel was not talking, or even making distinct babbling sounds. But the real epiphany came one day with the help of a vacuum cleaner.
Samia was vacuuming, and Kauvel kept yanking the machine’s cord from the wall socket over and over. She scolded him, and he showed absolutely no response — not to the word “no,” not to her tone of voice, not to her facial expression. “That’s when it really hit me that this isn’t just a kid being mischievous, there is really something wrong,” Mohazzabfar says. Kauvel’s hearing was tested, but it was fine. Then he was diagnosed as autistic. “It’s depressing, scary, gut wrenching. I guess you just feel lost,” Mohazzabfar says of her initial reaction to the news.
The first rule in diagnosing an autistic spectrum disorder (ASD) is that each child’s symptoms are as different as the children themselves — hence the term “spectrum,” which refers to a child’s range of abilities. One child may be classified as severely autistic or low functioning; another could be high functioning or diagnosed with Asperger’s Syndrome (autistic behavior minus the language deficiencies). Experts recommend using any label merely as a starting point for strategizing treatment.
The earliest signs of autistic behavior usually relate to a child’s difficulty in communicating. A child may not make eye contact. In fact, when a parent looks a child squarely in the eyes, the child may seem off in a distant world. An infant might be repelled by touch with no desire to cuddle. As they get a bit older, they often express little or no interest in other kids.
Raphael Bernier, Ph.D., a researcher with the University of Washington’s Autism Center, believes the signs of autism manifest as early as 1 to 2 years of age, in the earliest forms of baby communication. “Are they responding to their own name, making eye contact, paying attention to people and faces? The social component is the most important thing, and responding to their name is the earliest foundation of social skills,” says Bernier.
A child’s speech development is another indicator. A young autistic child will not understand a parent’s simple questions or instructions. “Do you want juice?” may elicit no response. As with all of the early detection symptoms, Bernier points out that a child is not autistic if he ignores someone calling his name occasionally. After all, part of a typical toddlerhood is stubbornness. Rather, he says, parents and caregivers need to watch for behavior that is persistent, not just a phase.
Sometimes the earliest signs of autistic spectrum disorders are violent tantrums. Brenne Schario, the executive director of the Washington chapter of Families for Early Autism Treatment (FEAT), says public outbursts are difficult for autistic families, because inevitably the parents receive what she describes as “that stare” from others. “It’s the way people look at you that bothered me the most. That look of ‘Would you control your kid?’ or ‘What’s wrong with him?’”
She remembers that pain well. Two of her three sons were diagnosed autistic, and she says their fits forced her to do her grocery shopping in the middle of the night. She recalls the times she would drive her son Nathan home from preschool along a different route than usual. “He would get violent; he would scream a horrifying scream all the way home.”
Repetitive behavior is common in ASD children. They may listen to the same song over and over. They may eat only one food. Repetitive behavior may flare up when such a child is nervous or their routine has been disrupted. Other early indicators may include a child’s constant spinning or arm flapping. Seizures are a big red flag.
Cathy Deleon, the director of Clinical Services at the Children’s Institute for Learning Differences (CHILD) on Mercer Island, suggests that concerned parents ask for a test called a sensory profile, which is most often administered by an occupational therapist or speech therapist. Another common tool is known as the M-CHAT, the Modified Checklist for Autism in Toddlers.
Pediatricians may begin noticing clues at 18- or 24-month well-child checkups. But, in the event they do not, Deleon urges parents to persist in seeking answers when there is an inkling of concern. “I don’t like to think of a child in terms of where they are on the spectrum, but rather, what’s missing or in the way of him not being able to be a friend, have a meal with a family, those kinds of real-life things.” She says the earlier a child is diagnosed, the sooner the work to help the child can begin.
The impact of autism
The Centers for Disease Control’s (CDC) most recent estimate that one in 150 8-year-olds is somewhere on the autism spectrum has sent schools and other groups scrambling to meet families’ needs. In 2006, the CDC reported that American schools were treating about 225,000 children between the ages of 3 and 21 under the “autism” classification for special-education services. That number is roughly a tenfold increase over just a decade before. Boys are affected four times more often than girls. Part of the alarming uptick may be due to more behaviors and disorders being classified as ASD. But many experts believe there is more to it.
Here is the impact at ground level: In Seattle Public Schools (SPS), with roughly 45,000 students enrolled, 400 have been diagnosed with ASD — that’s a rate of one in every 112.5 students. The district has targeted sites throughout the city with a range of specialists staffed to meet the students’ varying special needs. Michelle Corker-Curry, the district’s associate academic officer, says that services offered range from assistance in general-education classrooms to pullout classrooms for more severe cases, where a handful of children (no more than eight) have two aides and one highly trained certified expert.
Corker-Curry emphasizes the need for cooperation and coordination between the school and the family. “We are incredibly privileged to work with these kids, but it’s for only six hours a day, and then they go home to their family. Consistency and predictability are very beneficial to the child.”
Another indicator of supply rushing to keep up with demand is the increase in private schools that offer even more individualized attention. The new Academy for Precision Learning (APL) in northeast Seattle will teach nine elementary-age students next year. While the school does not want to be known as an autism school (and is in fact offering scholarships for general-ed students), APL was founded by parents of autistic kids who believe in, and can afford to pay for, highly individualized attention.
The private-school attention comes with a price tag similar to some other Seattle-area private schools, with tuition ranging from $21,000 for a midrange ASD student to $36,000 for a pullout situation in which a child has one-on-one attention all day long.
The search for a cause
Herein lies the painful controversy: In TV dramas, bestselling books and recently in courtrooms, not to mention thousands of real-life households, the flashpoint is vaccines.
Are the currently recommended vaccines given to infants — or perhaps one shot in particular — responsible for triggering autism? The experts — and so far all the research — says no. The MMR vaccine, which immunizes children against measles, mumps and rubella, has gotten the most attention in recent years. A decade ago, the culprit was thought to be thimerosal, a preservative in the MMR shot that contains mercury. The theory was that children’s brains were literally being poisoned. But nearly a decade after the removal of thimerosal from all vaccines administered in Washington (other than certain flu shots), autism rates do not seem to be declining.
Experts on both the clinical and research fronts insist that vaccines are not the root problem. The American Academy of Pediatrics reminds parents on its Web site: “Vaccines are one of the most successful medical advances of all time.” But a recent lawsuit involving a 9-year-old Georgia girl brought to the forefront another theory: Vaccines contribute to an inherited mitochondrial disorder, which in turn causes autism. Mitochondria serve as the energy sources for a body’s cells. They have their own genetic material, which, even in typical children, is frequently flawed.
So the question for mainstream science appears to be: Is something preying upon some children’s genetic vulnerability? “There are 90 percent inheritability aspects,” says the UW’s Bernier. “But we also know that genes never act alone….It’s tricky because we have multiple genes involved, plus complicating aspects such as a myriad of environmental factors.”
Dr. Amy Belko of Olympia Pediatrics says that the removal of thimerosal in 1999 eased many parents’ fears, but, “There are still families concerned enough to request staggered vaccination schedules. Other parents are delaying the first MMR shot until the child is 2 years old, roughly when the child is speaking.” Belko says these situations are not ideal because they leave children unprotected in the event of an exposure. When news of this spring’s measles outbreak at a local church camp hit the Olympia newspaper, Belko says a number of families came rushing back to her office to get the vaccine.
For the past 20 years, experts — like Seattle Public Schools’ Corker-Curry — say the most successful ASD treatments have been founded on behavior therapy known as applied behavioral analysis (ABA). In its purest form, ABA is intensive — several years of one-on-one therapy for 25-30 hours a week. Trained professionals and parents work with children, using flashcards and other visual tools to retrain their young brains.
The ABA method has evolved over time, but it and other similar methods closely track a child’s progress in a given skill until fluency is reached. By way of example, therapists define “fluency” as asking a child their name and having them make eye contact and answer right away, not in 45 minutes, a communications delay that is common in autistic children.
Annette Estes, Ph.D., is currently conducting studies at the UW’s Autism Center on the very youngest of children — those between the ages of 12 and 24 months. She’s looking into whether a form of behavior therapy she describes as more “naturalistic” and play oriented benefits children who show early signs of autism. “The brain is very malleable at this age, very open to experience,” says Estes, who also says that early intervention is critical. According to Estes and others, a diagnosis before the age of 3 or 4 is ideal.
At the private school APL, Kauvel Mohazzabfar, now 8 years old, has shown progress in his language skills. At age 2 and half, when he was diagnosed, he was nonverbal. Now he can read at the level of a 5-year-old and do some second-grade academic work. Friends call Kauvel’s improvement miraculous. His mother credits early intervention and the intensive therapy he receives at school for his great progress. “People who haven’t seen him in one or two years are surprised,” she says.
Similarly, FEAT’s Schario, whose son Nathan is now 17, credits applied behavior analysis with saving her child. “The underlying thing is to give parents hope,” says Schario. “When Nathan was diagnosed at 2 years, 11 months, he was expected to be institutionalized. Now he is high functioning and attends a public high school.” Nate is creative, loves history and is most interested in learning video editing to make short films. His mother hopes that in the near future, Washington lawmakers will follow states like Pennsylvania in requiring insurance companies to cover $30,000 worth of ASD therapy for families.
Though there is no cure yet for autism, there are a multitude of possible treatments, and often parents try a variety of things to help their ASD kids. Some believe at least part of the answer lies with diet. Others report success with supplements such as the B vitamins, which some believe aid speech development. There’s also chelation, a highly controversial treatment that removes metals from a child’s bloodstream. Mercer Island mother Nancy Gordon has worked with a doctor to experiment with different biomedical treatments and believes they have been key factors in her son Josh’s progress. She says, “We are doing so many different things for him, it is difficult to know exactly what it is that is working.”
Josh’s occupational therapist at CHILD, Cathy Deleon, says he has skills and strengths that, if developed, will serve him very well as he gets older. His mother says Josh might even join a swim team next spring. A stroke at a time, a step at a time. Either way, it is success stories like these that inspire some parents to see a world of possibilities on the other side of autism.
Hilary Benson is a writer and mother of three sons living in the Seattle area.
UW Autism Center: Look under “What’s New” to find a link to its new DVD, “My Next Steps: A Parent’s Guide to Understanding Autism.”
The Autistic Spectrum: A Parent’s Guide to Understanding and Helping Your Child by Lorna Wing, M.D.
Could It Be Autism? A Parent’s Guide to the First Signs and Next Steps by Nancy D. Wiseman
Louder Than Words by Jenny McCarthy
Emergence: Labeled Autistic by Temple Grandin and Margaret M. Scariano