Autism Spectrum Disorder (ASD) continues to remain a mystery for doctors and parents. The condition, which is one of the fastest-growing developmental disorders in the U.S. – affecting 1 in 40 children – is marked by a range of atypical social and communication skills and ritualistic, repetitive behaviors. It is often diagnosed in the preschool years, and if caught early, there’s a lot parents can do. Here’s all you need to know about an early autism diagnosis.
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 campaign to raise public awareness of ASD.
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 40 kids in the United States may now be affected by ASD, according to a December 2018 report from the American Academy of Pediatrics.
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. "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.
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.
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.
No big smiles or other warm, joyful expressions by 6 months or later
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, babbling, or social skills at any age