Dr. Karina Poirier reports how ASD has gone from being rare to affecting 1 in 66 children in just a few decades. She asks ‘What does the new definition mean?’
Child psychologist Leo Kanner formally defined autism in 1943. Over the decades since then, our understanding of what autism is—and how it affects individuals, especially children—has evolved and expanded as clinicians have come to better understand brain structure and social development.
We now know that autism is a developmental disorder that begins in the womb and interferes with the development of certain mental structures. One of these structures regulates Executive Function (that is, a higher mental function that controls social problem solving). Another structure encourages Theory of Mind, our ability to empathize with others, based on the understanding that other people have their own thoughts and beliefs that are separate and different from our own. In combination with limited, repetitive behavior, these deficits can make it extremely challenging for a child to interact with others. Such impairments cripple social development, a process that feeds on itself because it worsens the child’s isolation.
By the early 1990s, our increased understanding of autism had resulted in more accurate, earlier diagnoses. While this led to more effective treatment options, it also contributed to an alarming increase in autism cases. With the publication of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (a.k.a. DSM-IV) in 1994, five distinct disorders were gathered under the umbrella of Autism Spectrum Disorder. Autistic Disorder (AD), or classic autism, characterized by impaired social skills, communication issues, and repetitive behavior.
- Asperger’s Disorder, a mild form of autism in which the individual can communicate well, but might restrictive, repetitive, and fixated behaviors (i.e., talking about the same topic nearly everyday)
- Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), defined mostly by impaired socials skills and odd interests that often make communication difficult.
- Childhood Disintegrative Disorder (CDD), a sudden loss of all social skills at age two, followed by language impairment and repetitive behavior.
- Rett’s Disorder, an erosion of social and cognitive skills beginning at age seven that take the child back to an 18-month old developmental level. It is often associated with increased clumsiness and a slowing in the growth and development of the head.
At the time of the publication of the DSM-IV (1994), some cases of autism were also considered curable, though they might leave behind mild, residual behaviors.
Rethinking the Definition
By the 2010s, it had become clear that the DSM-IV’s definition of autism wasn’t precise enough. The publication of DSM-V in 2013 tightened that definition. Rett’s Disorder and Childhood Disintegrative Disorder were redefined as separate syndromes, while the rest were collapsed into one diagnosis: Autism Spectrum Disorder (ASD). The new diagnosis focuses on restrictive, repetitive behaviors and social/communication deficits. Language delays are no longer accepted as part of the autism definition. This more accurately reflects the presentation of symptoms, progress of the disorder, and response to treatment that scientific evidence and observation have revealed.
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While this change in definition shakes up the diagnostic criteria, the intention is to better clarify the true nature of autism and stabilize the diagnosis. As currently defined, autism is more clearly a developmental disorder present from birth that manifests along a spectrum from very mild to severe. The new diagnosis also narrows its scope. The aim is not to leave children with Rett’s and CDD out in the cold—they will still be treated, of course; however, their treatment may take different directions than the treatment of people with ASD as we come to better understand all three disorders and what they require of us.
Another change is that we can no longer consider autism curable. The DSM-V plainly states that ASD is a lifelong disorder that begins in childhood and has no cure. The symptoms must still present early in life, particularly after social demands exceed the child’s limitations. Learned strategies may mask ASD symptoms later in life, but the effects still linger. Can we treat autism successfully? Of course, we can. That has been demonstrated repeatedly, with many high-functioning people with ASD making significant contributions to society after an intense therapeutic intervention.
Clinicians can now more precisely diagnose an autistic child by using criteria that indicate the level of severity. This allows them to focus on treatment plans unique to the individual, rather than those tailored to the formerly accepted diagnoses.
How does this affect you? It comes down to this: we must reassess every child who was diagnosed as autistic before the DSM-V was published. We can no longer treat children with Rett’s and CDD disorders as autistic. This will most likely result in fewer autism diagnoses as we properly categorize those disorders. It should also result in more specific treatment plans for autistic children and, ideally, more targeted research efforts.
We will no longer artificially separate children with Asperger’s, PDD, and AD. In some practices, this may result in new treatment and intervention protocols. In others, where the clinician has already tailored treatment to the child’s specific symptoms, little will change.
And even though the discipline as a whole no longer considers ASD curable, the goal of treatment remains the same. We’ll continue striving to help children with autism grow beyond their diagnoses, to live fulfilling, productive lives as the bright and beautiful individuals they are.