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“It’s more about what the doctor’s special interest is rather than the specialty, because some psychiatrists don’t have a lot of experience with autism, and others do.” (Getty Images)
For any parent, welcoming a new baby home is a time of joy and challenge, lost sleep and new adventures. Your baby will likely grow and thrive, hitting various milestones on cue, just like your pediatrician says. But for some parents, signs that not all is going according to the typical plan can begin showing up about the time your child should be starting to speak, usually between the ages of 18 and 24 months. There are a range of reasons why a child may be delayed in developing speech, but one is autism spectrum disorder.
The National Institutes of Health reports that ASD now stands as the umbrella term for a few related conditions that had previously been separated as different diagnoses. These disorders are autism, Asperger syndrome (which is usually less severe than autism and was sometimes referred to as high-functioning autism) and Pervasive Developmental Disorder – Not Otherwise Specified, or PDD-NOS. The latter was also called atypical autism and usually fell somewhere between Asperger syndrome and autism in terms of severity.
Certain symptoms are common across the entire autism spectrum. “Autism is a behaviorally-defined disorder of impaired communication with behaviors that we call restrictive and repetitive behaviors,” says Dr. Ann M. Neumeyer, medical director of the Lurie Center for Autism at the MassGeneral Hospital for Children in Lexington, Massachusetts. Signs of ASD may include “certain behaviors that are atypical, like hand flapping or excessive adherence to routines or impaired communications,” both verbal and nonverbal, and difficulty conveying meaning through language.
Dr. Eugene Arnold, a psychiatrist and researcher at The Ohio State Wexner Medical Center’s Neurological Institute, says other symptoms may include “impairment of reciprocal social relations,” meaning the child doesn’t respond appropriately to interpersonal interaction. This could show up as an inability to relate to other children and “maybe a delay in speech and communication in general. It may also include not matching up nonverbal communication like nodding or shaking your head for ‘yes’ and ‘no,’ and not waving bye-bye.” Some children with ASD also have sensory abnormalities leading to pain or discomfort in situations that wouldn’t normally elicit such a response in most kids. Many children with autism also display “a rigidity in habits” and an overwhelming need “to have certain routines or rituals,” he says.
If you notice any of these symptoms, start by visiting your pediatrician or family physician. Your pediatrician can screen your child for autism and make a referral to an ASD specialist who may be able to help. You could also “find a center that does autism diagnosis, which might be a developmental pediatrician or a child psychiatrist or a psychologist,” Neumeyer says. Early intervention services may be available free of charge in your community; Neumeyer recommends visiting the resources page on the Autism Speaks website for more information about local services and options.
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The important thing to look for is the area of focus for the provider, Arnold says. “It’s more about what the doctor’s special interest is rather than the specialty, because some psychiatrists don’t have a lot of experience with autism, and others do. Some behavioral and developmental pediatricians may not be interested in autism, and others focus on it. Some neurologists are very interested in autism and they treat it a lot, but others are not. The best thing would be to go to a clinic that specializes in autism and there you would find people who are definitely interested in treating it.”
Neumeyer says when looking for a specialist to help with ASD, you should “ask your pediatrician whom they recommend. Generally speaking, pediatricians have an idea about who’s reliable, who’s honest, who’s a good communicator and who’s respectful.” She says these are all the same traits you’d want in your own doctor, and she emphasizes that a specialist treating ASD needs to be a great listener. “It’s important that the parent and the physician have mutual respect and that the physician can listen to the family, because caring for children who can’t communicate is very difficult.”
As a doctor caring for children with ASD, Neumeyer says, “you have to be very observant and you have to listen very carefully to what the parent is telling you about the child. For example, the child might have difficulty falling asleep because they’re in pain or maybe because they’re anxious, and so you have to listen and watch carefully to learn what the root cause is of the problem.”
When it comes time to see a specialist for ASD, Neumeyer encourages parents to bring any and all documents from previous testing or screening that’s been done by the pediatrician or other health care providers. She also notes that in some cases, the child’s teacher or daycare provider will be the first person to notice that something isn’t quite right, so it may be helpful to ask that person to write up a brief summary of which behaviors have been observed and when they commenced. She also says you should bring records of any hospitalizations the child may have had.
Although no one’s certain what causes ASD, and there’s probably no common cause of all forms of autism spectrum disorders, Arnold says “we know there’s certainly a genetic aspect. But that genetic aspect could be a vulnerability to some kind of environmental stressor,” such as a chemical or a social structure in the child’s life. Diet is also a factor that Arnold and other researchers are looking at carefully to determine whether there is a nutritional trigger for some types of ASD.
Although there’s currently no “cure” for ASD, Arnold says the best treatment to date has been “applied behavioral analyses,” which focuses on positive reinforcement of appropriate behaviors. “It uses social learning theory – what’s reinforced tends to increase and what’s not reinforced tends to decrease” – to teach children with autism which behaviors are considered desirable and which should be eliminated. Because each case of ASD is as unique as the individual who has it, you’ll need a tailored approach to address your child’s specific needs.
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Although an ASD diagnosis can be challenging, the good news is the disorder “does tend to get better with maturation in most cases,” Arnold says. The worst symptoms are usually between the ages of 4 and 5, but after diagnosis and the commencement of treatment, most children do improve. “By the time they’re adults, [many ASD patients] just seem a trifle odd, but don’t really stick out and they’re able to carry out useful jobs and make a living and fit in.” Some companies now specifically recruit people on the spectrum because many excel in computer- or math-based tasks and they often view complex problems differently than people without ASD. “They really can contribute something very useful to society, particularly in our technological age,” Arnold says, noting that the chances of this outcome increase in children who have meaningful speech by the age of 5 or 6 and those with normal or above average intelligence. ASD patients also benefit from early intervention and assistance from specialists who focus on managing this disorder.
