We have all seen the “Autism Awareness” bumper stickers: the ribbon composed of colorful jigsaw puzzle pieces, symbolizing the diversity and complexity of autism spectrum disorder (ASD) and its need for planned and thoughtful solutions. For many of us, when we see these bumper stickers, we probably think first of children with the disorder, their special education needs, and the tireless struggles of parents to gain support for their children. After all, in most cases it is parents who have placed the bumper sticker on their car.
What many of us probably don’t think of first is the adults who have ASD. Until very recently, despite ASD having been defined as a lifelong condition, no accurate statistics were available on adults with the disorder. However, in 2009, England’s National Health Service conducted the first study of autism in the general adult population and found the prevalence of adults with ASD to be about 1 in 100 persons—roughly the same as the rate among children. Many such adults live in a state of quiet crisis. For example, in another UK report, it was noted that 51% of adults with ASD were unemployed without access to benefits, and at least 1 in 3 experienced “severe mental health difficulties” due to a lack of support. For many affected adults, especially those with high intellectual functioning, ASD remains a “hidden disability.”
Raising awareness about ASD continues to be crucial. Early intervention during childhood has been proven to improve outcomes, with many patients able to increase functioning or even move out of the autism spectrum. But just as important, heightened awareness is helping to reduce the stigma of the disorder and to increase compassion among the public. Support and understanding are especially important for affected individuals as they transition into adulthood and attempt to find work.
Autism spectrum disorders are complex developmental disorders of brain function characterized by impaired social interaction, problems with communication, and unusual or severely limited activities or interests. Symptoms generally first appear before the age of 3. With the recent update in 2013 of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), all forms of autism are now referred to as autism spectrum disorder (ASD). Under the new definition, the diagnosis of ASD includes the formerly distinct categories of autistic disorder, childhood disintegrative disorder, pervasive developmental disorder–not otherwise specified (PPD-NOS), and Asperger syndrome. (In other words, moving forward, higher-functioning patients will no longer be given a diagnosis of “Asperger syndrome,” although for those who have already received this diagnosis, the term will grandfathered-in.)
Cases of ASD appear, on the surface, to be developing at an ever-increasing rate. One in 68 children were diagnosed last year, up from 1 in 88 in 2012—reflecting a 10-fold increase over the past 40 years. According to a report issued late last month, New Jersey now has the highest reported rates of autism nationwide, with 1 in 45 children being diagnosed with ASD. Most notably, this prevalence signifies a 30% increase over the past 2 years alone. Some in the public have expressed alarm that this dramatic rise in prevalence demonstrates a growing “epidemic” of autism, while parents in New Jersey have voiced a further concern that some environmental factor (such as contaminated ground water) specific to that region might be to blame. However, others stress that a rise in prevalence does not automatically point to a true increase in new cases. It is worth noting that New Jersey is 1 of only 4 states with an autism registry that requires reporting by healthcare providers. This would seem to indicate that more rigorous case-counting may at least partially account for the upsurge of ASD diagnoses in that state. In other parts of the United States, a less pronounced but nevertheless escalating rate of ASD may also be explained by a growing ASD awareness and an accompanying greater sensitivity in identifying cases. Disease awareness, as a rule, tends to spread by increments, with annual incremental increases in diagnoses its natural corollary. Then, too, the updating of the DSM-5 and its new umbrella definition of autism to include “milder” conditions along the spectrum, such as Asperger syndrome, may inadvertently help create the illusion of “new cases.” In fact, the names of certain disorders can be seen as simply shifting to new spots, like balls in a magician’s cup trick.
Spurious dramatic increases in disease case rates are nothing new. A similarly disturbing escalation of bipolar disorder rates among adolescents was seen between 1996 and 2004—a 7-fold increase in fewer than 10 years—possibly for related reasons. With the publication of the DMS-4 in 1994, the bipolar disorder spectrum was broadened to include the diagnosis of bipolar II disorder, a less severe form of the illness characterized by episodes of lower-level mania (or, hypomania) that to the casual observer might seem like nothing more than “exuberance” or “youthful energy.” While the mania symptoms would go unnoticed, adolescents with the disorder (25% of whom are as young as 12 years old) would instead often present for the first time with the more obvious symptom of serious depression, in some cases after a suicide attempt. Before the DSM-4, the median time from onset to diagnosis was 6 years. These 6 years represented precious time lost—particularly with lack of treatment carrying such high stakes. The broadened definition of bipolar disorder spectrum has helped to correct a historically under-recognized condition, especially among teens, and in the process has saved lives.
“Overdiagnosis” is of course another offshoot of disease awareness, and some would argue is the reason behind the high ASD prevalence rates. In general, psychiatric disorders, where diagnosis relies so heavily on reported behaviors and on highly subjective symptoms, are certainly more prone to overdiagnosis—especially when disease awareness of the milder cases is heightened—than, say, medical conditions where a simple blood test or tissue biopsy is absolutely confirmatory.
Finally, a true increase in ASD cases cannot be ruled out. Because there is no single known cause for the disorder, it may very well be that an increase in unknown environmental factors such as viral infections or certain toxins (such as mercury) may be triggering the disorder in genetically susceptible toddlers. And when it comes to the much-publicized charge that vaccinations may be the cause of autism: the scientific consensus is that there is no link, but in the court of popular opinion, the jury is still out.
To place ASD in the perspective of other mental health disorders: to date, bipolar disorder and schizophrenia are both, separately, almost twice as prevalent as ASD. It is therefore possible that ASD, while seemingly at “epidemic levels,” is in fact still under-diagnosed.
Each year, on World Autism Day on April 2 and throughout the month of April, Autism Speaks organizes the Light It Up Blue event to build awareness of ASD. The international community “lights blue” landmarks, buildings, sporting venues, etc., to build awareness and support for ASD.