Moments after walking through the front door of a tidy Colonial home in Montclair, New Jersey, Debbie McCarthy is ambushed by her adoring fans: 2-1/2-year-old twins, Kevin and Andrew Wallace. As mom Juliet takes Andrew to inspect the box of toys their visitor has brought, McCarthy pulls Kevin up onto her lap, tickles him a little, and nuzzles him a bit. He then joins her in a scrappy round of "Head, Shoulders, Knees, and Toes." If you knew nothing about this scene, you'd figure you were simply watching the world's most energetic aunt playing around with her adorable nephews.
But that's not the case. McCarthy works for the Jeffrey Dworkin Early Intervention Program at Montclair State University, which provides home visits to young children who show evidence of developmental delays. In this case, McCarthy (along with other specialized therapists) spends several hours a week at the Wallace home because both twins have Pervasive Developmental Disorder-Not Otherwise Specified, a diagnosis for those who have some autistic traits but do not meet the criteria for a diagnosis of classic autism.
"I have to say that these boys aren't what you might typically think of when you think of autism. They're beginning to talk. They go to a regular preschool each morning. I have every expectation that they are going to end up doing just fine in life," says McCarthy.
The Wallace twins, in fact, are not so exceptional in today's autism world. That's because autism -- a word that still evokes images of completely withdrawn children rocking in a corner or of Dustin Hoffman's childlike savant in the movie Rain Man -- doesn't mean the same thing today that it once did, says Geraldine Dawson, PhD, director of the University of Washington Autism Center, in Seattle.
"Autism, as we define it now, has a very wide range of symptoms. It can refer to a child with 'classic' or 'full-blown' autism, who is quite severely affected, to a child whose difficulties are so subtle that most people would not be aware he had autism at all," says Dawson.
Also included in the realm of what is now termed Autism Spectrum Disorder, or ASD, are those with Asperger's syndrome, a high-functioning form of ASD that is characterized by obsessive interests and social awkwardness. What children on the autism spectrum have in common is difficulty relating to their world and the potential to improve, sometimes dramatically, if they are diagnosed and treated early in life, says Dawson.
The enormous impact that early intervention can potentially make is partly why the Centers for Disease Control and Prevention (CDC), along with several partner organizations, is waging an ambitious new campaign to raise public awareness of ASD and related developmental disorders.
Another reason for the CDC's multimillion dollar effort: Autism has, quite simply, become too large an issue for anyone to ignore. In recent years, the disorder has made headlines as the rate of diagnosis has increased by about tenfold in this country. Recent research suggests that at least 1 in 250 kids in the United States may now be affected by ASD, according to the Bethesda, Maryland-based Autism Society of America (ASA). (For information about ASD and other resources, log on to autism-society.org.)
Exactly why there has been such a dramatic increase in autism cases has been hotly debated for years. Some believe that, in good part, doctors are gradually getting better at identifying the disorder. In addition, more people are now being classified as having autism due to the disorder's current broader definition.
"These factors may partly explain the rise, but they don't account for everything that is happening," says ASA former president and CEO Rob Beck, noting cases of "classic autism" itself have been on the rise. In California, for example, the number of children with classic autism -- which is often accompanied by mental retardation and/or epilepsy -- has tripled since 1987. "No one yet has a firm explanation for what is happening, but our moral obligation is to help children with autism now," Beck says.
There is one point upon which every autism advocate and expert agree: The earlier in life ASD can be identified and treated, the better. That's because the younger we are, the more adaptable our brains are, explains Beck. In the case of autism, it's believed that intensive therapy early on may encourage the young brain to reroute itself around faulty neural pathways.
While therapies vary widely, the most effective forms aim to actively engage ASD children, teaching them skills that come naturally to most of us -- from making eye contact and playing with others to actually learning how to speak and control their body. In some cases, effective, early intervention could make the difference between a child's eventually being mainstreamed in school or not, says Nancy Wiseman, an ASD mother who founded First Signs, a public awareness campaign and training program that focuses on early detection of ASD and other developmental disorders. (Log on to firstsigns.org for helpful checklists as well as autism resources and links.)
For children diagnosed with milder forms of ASD -- such as Asperger's syndrome -- early intervention can teach them how to relate better to others and potentially lessen their sense of alienation throughout life. Even the most severely affected children, who may never develop the ability to speak, can possibly learn alternate ways of communicating.
Intervening early can also put the skids on a truly vicious cycle that develops between ASD children and those around them. "In general, the less responsive a child is -- the less he coos, smiles, makes eye contact -- the less of this stuff he tends to get back from parents and others," says Rebecca Landa, PhD, director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, in Baltimore.
The result may be that the child then spends more time focusing just on himself, paying attention to things that won't help him relate to others around him. "A key part of early intervention is teaching parents how to elicit responses and get the best out of their baby," says Landa.
For decades, it was thought that ASD couldn't be diagnosed and treated until a child was about 3. Today, that's considered late in the game. New screening tools are able in many cases to identify children at risk at 18 months of age and even younger.
That said, it's important to recognize that ASD presents itself in many ways, at many different points. And parents are often the first to sense trouble -- even if they can't put their finger on what it might be. Baltimore mom Laura Maguire says she knew just weeks after she brought her newborn daughter home from the hospital that something wasn't right. "Charlotte screamed uncontrollably, as if she was in terrible pain. At first we thought it was colic, but it never went away," says Maguire.
For First Signs-founder Wiseman, it was as if her daughter slowly began to slip away as she neared her first birthday. "Sarah stopped babbling and making eye contact. She retreated into her own world and just never started speaking," she says.
Both of these families voice a complaint shared by many parents of children with ASD: Their pediatrician not only failed to identify ASD's warning signs, but they also minimized or dismissed their concerns. "I kept talking about the fact that Sarah was not speaking. She didn't seem to respond to her name, either. But the doctor would say, 'Oh, she's just a little late. She'll grow out of it,'" says Wiseman, who believes her doctor had the best of intentions but was not adequately educated about developmental delays and their warning signs.
Well-baby visits, says Wiseman, are also a difficult time for a doctor to check a child's development because appointments are often rushed and children don't generally behave as they typically might at home or somewhere else that is comfortable and familiar.
This is why parents should be vigilant about having their concerns addressed. "Don't wait until the end of the visit when the doctor's starting to walk out the door. Tell him or her right up front what you want to talk about and come with examples -- 'My baby doesn't look me in the eye and doesn't seem to notice when I walk in the room.' 'My 18-month-old isn't interested in games like peekaboo,' or 'She's missed the following developmental milestones,'" says Wiseman.
If your pediatrician dismisses your concerns or advises a wait-and-see approach, take action, says Wiseman, no matter how much you want to believe his or her comforting words. "If the pediatrician refuses to have her screened, find another pediatrician or locate a specialist, such as a developmental pediatrician or pediatric neurologist," Wiseman says.
Parents of children under 3 can also schedule an appointment at the state-funded Early Intervention center in their area, which will provide a free developmental assessment and references to specialists qualified to make a formal diagnosis. Whatever you do, don't let sleeping dogs lie if your concerns haven't been satisfactorily addressed. "We've seen time and time again that parents know their kids best, and when they suspect that something isn't right, their instincts are usually accurate," says Dawson.
Whether you've fought for an assessment or are stunned by a physician's unexpected observation, hearing that your child might have a developmental disorder -- much less some form of autism -- can rock you to the core. "When I heard the word 'autism,' alarm bells went off in my head. My husband and I grieved for the loss of the successful child we had always imagined," says Maguire, whose daughter currently attends a special preschool but may eventually be mainstreamed.
True, there is no cure for autism yet, and it does mean that life may take a different direction. Some children who are severely challenged will remain severely challenged, no matter how early they are treated. Financial hardship is another concern because not all treatments for ASD are covered by insurance or provided by the state. But in diagnosis and treatment, there also comes empowerment and hope.
"You have to remember that your child is the same child the day after you receive the news as he was the day before. A diagnosis of ASD is actually the key that opens the door to all sorts of interventions and techniques that will help him live a fulfilling and productive life," says 43-year-old Stephen Shore, who was diagnosed with autism as a young child and given intensive therapy. Shore has gone on to marry and attend grad school.
Watching the Wallace twins -- two children who weren't speaking and were hesitant to interact with non-family members when their therapist began working with them four months earlier -- is convincing enough. "I know that not all children do this well," says mom Juliet, who is still somewhat hesitant about saying that her boys are on the autism spectrum. "Ultimately, though, I guess I don't care what you call it. Getting my boys help has made a difference."
The following signs may indicate a child is at risk for atypical development and is in need of an evaluation, according to First Signs, a group promoting early diagnosis of developmental disorders.
Peg Rosen, a mother of two, is a writer in Montclair, New Jersey.
Originally published in American Baby magazine, January 2005.
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