The DSM-5 is the most recent edition of what has been historically a manual documenting mental health issues. The changes in this latest version are significant and have left many parents, therapists, and educators scratching their heads. What do these new diagnoses mean for people on the spectrum?
Many of the previous diagnostic understandings of autism are consolidated in the DSM-5, although it does so at the risk of omitting those with milder forms of the illness.
Autism’s first understanding
The way autism is defined and diagnosed has changed as our knowledge of the illness has progressed. When Leo Kanner, an Austrian-American psychiatrist, originally classified the disease in 1943, it was assumed to be a kind of infantile schizophrenia caused by poor parenting.
Over the following several decades, autism was categorized as a group of developmental disorders (still mistakenly thought to be the product of poor parenting) until ultimately being recognized as a spectrum illness with a wide range of impairments.
The American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) has periodically amended its diagnostic classification of autism spectrum disorder, demonstrating this progression. Because of how Leo Kanner observed that children with autism demonstrated “extreme aloneness” and a “anxiously compulsive yearning for the preservation of sameness,” the second version of the DSM utilized his diagnosis of autism as a severe kind of emotional disorder when it was released in 1952.
Autism was recognized as a mental disorder by the DSM-II, which described it as a kind of infantile schizophrenia characterized by a disconnection from reality. The belief that “pathologically distant parents” were to blame for their child’s emotional disengagement had become so ingrained that psychologists openly linked autism to “refrigerator moms.”
DSM-II to DSM-III transition
The belief that autism is caused by cold and distant parenting had fallen out of favor by the 1970s. More and more study revealed that the disorder’s origins were in brain development, implying a biological involvement.
The third edition of the DSM was released in 1980. It established a new diagnostic for autism, separating it from schizophrenia and referring to it as a “pervasive developmental illness.”
While DSM-II did not address the diagnosis process, instead relying on the clinician’s personal observation and interpretation, DSM-III included three explicit diagnostic criteria for autism:
- A lack of desire to interact with others.
- Communication problems that are severe
- Responses to the environment that are unusual
Autism & PDD-NOS
In 1987, the DSM-III was updated. The criteria for diagnosing autism were dramatically altered as a result of the amendment. It included the diagnosis of pervasive developmental disorder–not otherwise specified (PDD-NOS), which extended the definition of autism by including a milder version of the illness.
The modification also removed a requirement in the original version of DSM-III that all three criteria for diagnosing autism must be present in a child’s first 30 months of life.
The 1987 amendment reflected the growing recognition that autism is a multi-faceted disorder. Instead of using the term “spectrum,” it refers to a range of disorders that might manifest throughout a patient’s life.
Asperger’s Syndrome is a kind of autism.
In addition to the three criteria established in the previous edition, the DSM-III revision included 16 new criteria. In order for a physician to diagnose autism, the APA stipulated that eight of the criteria must be satisfied.
PDD-NOS allowed physicians to include children who did not match all of the criteria for an autistic diagnosis but still need developmental or behavioral help.
The concept of autism as a spectrum of disorders was not established until the DSM-IV was published in 1994. In addition to autism and PDD-NOS, the DSM-IV included “Asperger’s disorder” (commonly known as Asperger syndrome), which was classified as a lesser form of autism. It also introduced childhood disintegrative disorder, which is characterized by significant developmental reversals and regressions.
Rett syndrome, which affects movement and speech, was also added in the DSM-IV (in girls more so than boys).
The Search for an Autism Gene
This diversification of autism in the DSM reflected the research trend at the time, which suggested that the development of autism could be traced back to the genetics of clients, and that each category of autism would eventually be associated with specific problems and treatments tailored to those problems.
With a better knowledge of autism, researchers worked in the 1990s to discover the genes that they thought were involved in the development of autism in the womb. Many studies looked at the human genome in depth, discovering hundreds of so-called “autism genes,” but none that could be linked to autism solely.
With time, it became clear that finding a genetic cause for autism and subsequently developing therapies for the five forms of autism listed in the DSM-IV would be impossible. Researchers and geneticists went back to the drawing board and decided that autism should be reclassified as a diagnosis in and of itself, with a spectrum ranging from moderate to severe.
During this time, there was no consistency in how doctors diagnosed autism, Asperger syndrome, or PDD-NOS in various states (or even within the same state). Parents advocating for a diagnosis, often based on the resources available in their state and the qualifying requirements for those programs, led to an increase in diagnoses, according to some studies.
The DSM-5’s Approach to Autism Diagnosis
With these considerations in mind, the DSM-5 was the first to introduce the term “autism spectrum disorder,” which is defined by “chronic impairment in reciprocal social communication and social interaction” as well as “limited, repetitive patterns of behavior” in early infancy. Each diagnostic group has particular characteristics that doctors must detect in order to give a client a favorable diagnosis.
DSM-5 deleted Asperger syndrome, PDD-NOS, childhood disintegrative disorder, Rett syndrome, and typical autism from its categories, which caused considerable disagreement. It replaced them with social communication disorder, which affects children who simply have linguistic and social deficits but not confined, repetitive behavior patterns.
Controversies in Diagnostics
Many activists were astonished by the severe reclassifications of many autism presentations. Some people are concerned that if diagnoses fade from the DSM, they may lose access to treatments and health insurance.
Clients who recognized themselves as having Asperger syndrome because it was included in the DSM-IV, for example, reported that seeing their symptoms in the handbook helped them identify their issues in ways they couldn’t previously. Not only did this provide them with a reason for their experiences, but it also provided them hope for treatment and symptom control. It was as though they had lost their identity when the diagnostic was removed from DSM-5.
Furthermore, experts debated whether the DSM-5’s stricter diagnostic criteria would make it more difficult for clients with milder symptoms to get the care they need, or whether the stricter criteria would slow the rise in positive diagnoses.
Some of the predictions that those on the more delicate end of the autism spectrum might lose their healthcare have not materialized since the release of DSM-5. However, there is evidence that the stricter definition of autism prevents some groups of individuals (particularly females, the elderly, and those with milder symptoms) from receiving a diagnosis that may help them manage their autistic symptoms.
Janice is a Board Certified Behavior Analyst. She graduated from the University of British Columbia with a Bachelor of Arts in Psychology and Special Education. She also holds a Master of Science in Applied Behaviour Analysis (ABA) from Queen’s University, Belfast. She has worked with and case managed children and youth with autism and other intellectual and/or developmental disabilities in home and residential setting since 2013.