As the fastest growing developmental disability in the United States, autism spectrum disorder currently afflicts one in 68 children and one in 42 boys (according to the most recent Center for Disease Control and Prevention report), with the numbers continuing to climb. Present from early childhood, autism is characterized by difficulty in communicating, learning, and forming relationships with other people. But, despite the growing social and economic impact and awareness campaigns, the how and why of autism still remain a mystery.
An Evolving Epidemic
In line with the national statistics, Susan Varsames, founder of the Holistic Learning Center in White Plains—a resource for families affected by autism and other language, learning, and behavior disorders—says she’s likewise witnessed a steep rise in the number of cases throughout her career in special education. When she was asked by the county to spearhead Westchester’s first Early Intervention Program at the Westchester Center for Educational and Emotional Development in the mid 1980s, there were three known families in Westchester dealing with the disorder. “In those days, the symptoms were very severe,” she recalls. “It was quite rare to see a case of Asperger’s syndrome. When families got the diagnosis, they would mourn the death of the child they thought they would have.” Now, thankfully, new treatments offer greater hope of unlocking a child’s potential.
Researchers are also looking at a range of culprits in their search to find the cause or causes, which, in turn, may lead to a cure. Varsames subscribes to the “total load theory,” which points to the combined effects of overly prescribed antibiotics, as well as possible toxins (such as the preservative thimerosal) in children’s vaccines, and the environment, as a possible cause. While the Institute of Medicine and the Centers for Disease Control and Prevention have concluded that there is no association between vaccines containing thimerosal and autism rates in children, she believes vaccines contribute to an increased toxic load. This, combined with the effects of genetically modified food products, can negatively impact the developing brain, she believes. Varsames also cites premature birth as a risk factor, noting that significant “sensory processing occurs late in pregnancy that helps children create a more mature neurological system.”
Watching and Waiting
With diagnoses on the rise, definitive causes not yet proven, and no known cure, many parents understandably experience anxiety if they see a sign indicating that their child may be that one in 68. No medical detection is currently available, leaving clinicians and parents to rely on behavioral signs to confirm diagnosis. According to the austism advocacy organization Autism Speaks, early diagnosis and intervention offers the best chance for improving academic and social skills, as well as quality of life into adulthood.
However, a new study written by Warren R. Jones and Ami Klin, both of the Marcus Autism Center in Atlanta, and published by the scientific journal Nature shows promise for eye-tracking technology as a means of early detection in infants as young as 2 to 6 months of age. The study showed that children later diagnosed with autism are less likely to make eye contact as infants. During the study, infants were shown videos of women acting as caregivers. The researchers used eye-tracking technology and found the babies who didn’t make eye contact were more likely to develop autism. While these findings may show promise for early intervention, further confirmation is required.
Because behavioral signs can evolve and change in very young children, “it’s quite hard to really know if autism is present until a child is closer to 2 years old,” says Catherine Lord, PhD, director of the Center for Autism and the Developing Brain, a collaborative program between Weill Cornell Medical College, NewYork-Presbyterian Hospital, and Columbia University College of Physicians and Surgeons.
To capitalize on critical intervention time, it’s important to identify a core set of behaviors as quickly as possible (see sidebar). “Seeing any one of these signs should encourage some concern,” says Lord, though she recognizes that interpreting the behavior of toddlers can be challenging. Certain suspicious behaviors may present early on and then resolve on their own, or a child may develop typically until an unexpected setback. “Some kids don’t show all the signs,” she says, “but most don’t show just one.”
“You only receive the [autism] diagnosis with delays in language, socialization, and behavior,” Varsames concurs. “A child may be shy or a slow talker or have poor eye contact or language difficulties. If they have only one of these issues, they might have other problems, but not an autism spectrum disorder.”
The initial step for parents with concerns, Lord says, is to talk to their pediatrician or family doctor.
Then caretakers should request an evaluation from a professional experienced with young children with autism, such as a developmental pediatrician. If the wait for an appointment is long or if there no developmental pediatrician nearby, parents can contact Westchester County’s Early Intervention Program (914-813-5094) to start seeking services.
A good evaluation should serve two purposes. The first is to make a tentative diagnosis to determine what’s wrong. For autism, this should involve gathering information from the parents or caregivers about the child’s everyday functioning, coupled with an observation of the child interacting and playing with a skilled examiner.
The other goal, Lord says, is to “better understand the child as a whole, in terms of strengths and weaknesses, so that the best approach or approaches to therapy and education can be determined. Parents may want a more careful evaluation to figure out what kinds of strategies may work best for them and their child.”
Sheryl and Aaron Irvington.
One Mother’s Story
In 2000, Irvington resident Sheryl Frishman gave birth to twins Aaron and Rebekah. Aaron seemed to be developing normally until “he began to develop odd behaviors at about 13 months,” and seemed to decline in skills, language, and attention.At 18 months, he was evaluated and diagnosed with severe autism. “If I held him down and held his head, he would still try to look away from me, so he was pretty profound,” Frishman recalls. “He had no language, he screamed all the time, he didn’t sleep. It was a very rough time.” Frishman quit her job as a disability attorney to advocate full-time for Aaron, “put him in a serious ABA [Applied Behavior Analysis, which is widely recognized as a safe and effective treatment for autism] program, and got him a lot of support.” This included speech therapy, physical therapy, and occupational therapy, as well as parent training for Frishman and her husband, to help ensure that Aaron got consistent support and help.
Despite the aggressive treatment plan, “we were told that Aaron would not make a lot of progress,” says Frishman. “He didn’t really speak until he was 7 years old.” Today, however, at 14, Aaron is “doing the best he ever has been. He is now speaking in full sentences and he just learned how to read,” says Frishman, who is now an attorney of counsel at Littman Krooks LLP.
“A word of advice to parents,” she says. “There is no ‘imminence’ in this, in that your child develops at his or her own pace. Aaron is the best kid in the world. He will always have his limits, but he has grown beyond my expectations and I’m really proud of him.”
What To Look For
According to Autism Speaks, high-quality early intervention can optimize outcomes for individuals with autism. But first, you have to know what to look for. Below are some examples of typical characteristics and behaviors of children with autism. Contact your pediatrician with any concerns.
Living on the edge
Experiences behavioral extremes: either being “hyper-responsive,” meaning very sensitive to stimuli, crying continuously, and difficult to calm, or “hypo-responsive,” meaning under-reactive to stimuli and seeming aloof and non-communicative.
Does not engage in reciprocity, sharing or imitating of sounds, smiles, or facial expressions with others.
Engages in repetitive hand-flapping, spinning, rocking, bouncing, and head-banging—and other actions which create sensory stimulation (aka “stimming”).
Spinning their wheels, literally
Uses toys in a limited or self-stimulatory fashion, as opposed to playing with them in a “productive” way. These could include incessantly spinning the wheels of a toy car, rather than pretending it’s driving somewhere. Another example would be repeatedly slamming the microwave door and listening for it to beep.
Fleeting eye contact
Does not maintain eye contact
Since eye contact is one of the earliest forms of communication in babies, one of the first indications of a possible communications delay may be a parent or caregiver having difficulty catching a baby’s eye.
Does not point to, show, or bring objects to adults by 12 months.
A loss for words
Has spoken a few words and stops talking completely for more than a month, doesn’t respond to his or her name by 12 months, can’t understand words out of context by 14 months, or has few or no socially directed vocalizations by 12 months.
Wants to be left alone, has become less interested in people, and seeks more time alone during the second year of life.