April is Autism Awareness Month, established in the 1970s by the Autism Society to “highlight the growing need for concern and awareness about autism.” Unfortunately, that need continues to outpace expectation: reports of autism have exploded over the past twenty years, leading some to believe that doctors are overdiagnosing Autism Spectrum Disorder on a large scale. In the interest of spreading awareness about common factors that lead to the misdiagnosis of Autism Spectrum Disorder (ASD), we spoke with Dr. Enrico Gnaulati, clinical psychologist and author of the recent book Back to Normal: Why Ordinary Childhood Behavior Is Mistaken for ADHD, Bipolar Disorder, and Autism Spectrum Disorder.
Q: Why do you think Autism Spectrum Disorder (ASD) is overdiagnosed? Where’s the evidence?
Dr. Gnaulati: The latest statistics out of the famed Centers for Disease Control and Prevention reveal that 1 in 68 children are now affected by autism. That’s a 30 percent increase in just two years. In 2002, 1 in 150 children were given the diagnosis and, in 1991, 1 in 500. The spike in diagnosis is mostly accounted for by “mild” cases of autism, where the afflicted child has acquired decent communication skills and has average, or above, intelligence. Many of these milder cases go on to shed the disorder—upwards of 30 percent, according to a University of North Carolina, Chapel Hill study, making one wonder if the diagnosis really applied in the first place. Remember, ASD is generally considered to be a life-long, disabling neuropsychiatric condition that a child does not shed as childhood progresses. Consequently, with a sizable percentage of children supposedly shedding the diagnosis in the course of childhood, we have to start questioning the validity of the diagnosis in many cases.
Q: If a questionable diagnosis of ASD gets a kid some services he or she needs, even if the diagnosis just loosely applies, or is arrived at according to a more conservative standard, why is that a bad thing?
Dr. Gnaulati: What the average parent does not understand is that a diagnosis of ASD is a severe diagnosis that teachers, outside professionals, and the lay public still very much view as a serious, disabling condition. Applying a diagnosis of ASD can immediately classify your child in the mind of others as “impaired,” or “severely limited” which can then impact how they perceive and interact with your child. Others may then expect less from your child, or “talk down” to him or her, which your child then might internalize as a “self-fulfilling prophecy” where he or she then think him or herself as less capable or limited.
When a diagnosis of ASD really applies a child’s limitations need to be accepted, worked with, and worked around. This is the most realistic and humane course of action. But, when a diagnosis does not really apply it can have untoward effects on a child where he or she might then create false self-limitations.
A child may have a cluster of speech and language, fine- or gross-motor delays, social and emotional difficulties which get lumped together as a case of mild ASD. That child may actually need services to address these developmental problems. However, separate, milder diagnoses can be used such as a Mixed Receptive-Expressive Language Disorder, a Communication Disorder Not Otherwise Specified, and a Developmental Coordination Disorder, and an Adjustment Disorder.
Parents are often unaware of how a severe diagnosis like ASD can follow a child and have unfavorable effects as that child enters adulthood, such as being denied, or having to pay more for, disability and life insurance, be prevented from pursuing certain careers in law enforcement and the military, or be denied a trucking or pilot’s license in many states, as well as a host of other restrictions.
If an ASD diagnosis applies it can be effective in getting a child much needed services and lead to a child’s limitations being accepted and worked with in humane, realistic ways. If, on the other hand, the diagnosis does not really apply your child may face false life limitations and restrictions.
Q: In your experience, what childhood phenomena are most likely to be confused with mild cases of Autism Spectrum Disorder?
Dr. Gnaulati: That’s actually a more complicated question than it seems! Sometimes it’s as simple as a “perfect storm” of everyday circumstances that make a child look autistic-like. I have had cases where a child is being raised by non-English speaking nannies, who anticipated that child’s every need, thinking that to love that child is too do everything for him or her, like feed and dress and baby-talk to him or her beyond an age where it is appropriate. These same children did not attend pre-school and, as such, missed out on the rich array of social and emotional learning that entails. Then when they entered kindergarten sirens went off and teachers and school personnel went straight to assuming the children were autistic because they seemed to lack basic communicative and social skills.
Otherwise, delayed language development, a proneness to tantruming, fussy eating, a preference for isolated play with objects, being “slow-to-warm,” or introverted by temperament, are, in my experience, the most common aspects of children that get confused with a mild case of autism.
Also, in our “politically-correct” ways of trying to be gender neutral we may overlook how boys develop differently than girls, on average, setting many boys up for a false diagnosis of mild ASD. Girls learn to point as a communicative gesture earlier than boys, are more empathic, acquire language sooner, and engage in social play to a greater extent than boys. It is not until around age five that the average boy catches up with the average girl in these areas. Without a firm knowledge of this professionals can falsely diagnose boys who are slow-to-mature in these areas.
Q: Is there any advice you can give parents who are thinking of getting their children assessed to help them prevent a false diagnosis from occurring?
Dr. Gnaulati: If signs of autism are clear—minimal or no language; extreme withdrawnness; limited eye contact; very infrequent shared emotional reaction; frequent disinterest in playing with peers; bizarre self-stimulatory behavior such as swirling around in a chair or staring endlessly at a ceiling fan; tantruming often when fixed routines are not adhered to—the earlier an assessment is conducted and services implemented the better. However, when the signs of autism are vague, mild, or unclear, parents need to be aware that the conditions surrounding a typical autism assessment can contribute to a struggling child appearing more autistic-like.
For instance, Dr. Stanley Greenspan, the inventor of the highly-effective Floortime approach to treating autistic children, conducted a study several years ago of 200 autism assessment programs around the country, many of which were located in prestigious medical centers. He discovered that only 10 percent emphasized the need to observe a child along with a parent or guardian for more than ten minutes as they spontaneously interacted together. He, himself, tended to observe a child playing with a parent for forty-five minutes or more, waiting for choice points to enter the interaction to engage a child directly to see of he or she was capable of more eye contact, elaborate verbalizations, or shared emotional reactions. Dr. Greenspan believed that these conditions of safety and sensitive interaction were essential in order to obtain an accurate reading of a child’s true verbal and social skills.
So, it is extremely important that parents insist that the person doing the assessment allow a parent to be in the room for an extended period of time to put the child at ease so that the assessment is being conducted with a child when they are at their best, emotionally speaking, and not unduly stressed. Young children vary in their ability to part from a parent and be in the presence of a stranger without being unduly stressed. You want to make sure that a stressed child, who is also possibly slow-to-mature, does not then get a false diagnosis.
Enrico Gnaulati Ph.D., is a clinical psychologist based in Pasadena, California. His work has been featured on Al Jazeera America, KPCC Los Angeles, The Atlantic, and Salon. He is the author of Back to Normal: Why Ordinary Childhood Behavior Is Mistaken for ADHD, Bipolar Disorder, and Autism Spectrum Disorder.