By Marina Zhang The Epoch Times
As autism diagnosis criteria have expanded over the years, experts worry that the lines between being autistic and normal are becoming blurred.Despite autism’s prevalence and public attention, it remains largely a puzzle. This series will bring the pieces together—what it is, what causes the condition, and what could relieve or even cure it.
When Adir has a meltdown, the 275-pound teenager becomes a danger to himself and everyone around him. He can’t speak, can’t work, and may never live independently. Meanwhile, adults not facing the same problems as Adir are taking online quizzes and self-diagnosing their conditions.
Autism was once a condition associated with disruptive and noncommunicative children who were destined to live out these problems as adults.
Yet 50 years after the diagnosis was first introduced, autism experts have felt the need to create a new label to remind the public of how profoundly disabling it can be.
The commission—led by Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles—recommended introducing the term “profound autism” for individuals who will never be able to live independently, require 24-hour support, are minimally verbal, and have an IQ below 50.
Two Different Realities
Between 2000 and 2016, nonprofound autism cases in 8-year-olds increased to 14 per 1,000 children—a 250 percent jump, while profound autism increased by 70 percent, according to CDC data. (We will explore the increase in profound autism later in the series.)
Though everyone within the spectrum is put under the autism label, the only thing the official diagnostic manual allows for as a way of differentiation is by assigning them a level, which indicates how much support they need.
There are three levels of support. Level 1 describes someone with minimal support needs, while level 3 describes someone with maximal support needs. Level 2 lies in the middle.
Between these levels can be a world of difference. Someone who is level 1 autistic may even be mistaken for not being on the spectrum.
Courtney Snailum is a level 1 autism self-advocate. She is independent but needs to create a script for herself when she’s socializing. Much of her socialization is spent on controlling her facial expressions, rather than enjoying the interaction itself. She is rigid with her routines and reacts disproportionately to changes in plans.
Adir, at level 3, whose case was cited in the Lancet commission, had behavioral problems as a child and grew up as an adult with the same disabilities. His aggressive outbursts have caused him to be dismissed from jobs, and his parents are now planning to place him in residential care.
Snailum is of the opinion that there should be a way to clearly differentiate autistic people who can self-advocate for themselves, compared to those who cannot.
How Did the Spectrum Expand?
Before 1987, the primary autism diagnostic label that was available was “infantile autism,” meaning children who had clear autistic manifestations within 30 months of age, who were intellectually disabled or had limited speech.
The 1994 introduction of DSM-4 added the label of Asperger’s disorder that could be given to children who showed signs of autism disorder but didn’t have a language or cognitive disability.
The label was relatively desirable as it allowed children to get support without the stigmatism of being intellectually disabled. For the first time, recipients of a mental health diagnosis saw their “label” as appealing and a marker of their identity rather than a deficiency.
The label of Asperger’s disorder, therefore, became quickly popular—to the point of losing some credibility.
Additionally, children who should otherwise have been diagnosed as autistic were given the label of Asperger’s or another diagnosis known as pervasive developmental disorder or PDD, as the latter two labels were less stigmatizing, Lord said.
Disagreements over the diagnosis and the intentional avoidance of certain labels were mostly resolved with the introduction of DSM-5 in 2013, which combined all three labels under one condition: autism spectrum disorder.
A Blurred Line
When Asperger’s, PDD, and autistic disorder were combined into autism spectrum disorder in the DSM-5, it led to a new issue: the line between being autistic and normal was blurred.
“Almost everything that autistic people do, ordinary people do sometimes as well—but with less frequency, more variability, and greater ability to control it in certain situations,” Lord said, noting that repeating words or phrases can be a symptom of autism, yet ordinary people may also display them. “People start seeing things as pathological that aren’t.”
Emerging studies suggest that some children may have been overdiagnosed.
The diagnostic criteria are subjective, according to pediatrician Dr. Randall Phelps. Therefore, whether a child is autistic depends on the clinician’s interpretation. For example, one criterion for autism is communication deficits, which include interpreting abstract ideas literally.
Most young children struggle with abstract thinking, but if an inexperienced clinician does not know that abstract thinking tends to develop during adolescence, they may interpret the child’s lack of understanding as a sign of autism.
To be considered an experienced clinician, they would need exposure to around five to 10 people who are within the same age range and language level range, who do and do not have autism, Lord said.
“You could be somebody who had a ton of experience with very verbal autistic people, but you’re not used to nonverbal autistic people.”
Outside of clinical diagnosis, there is also a growing group of adults who identify as being on the spectrum after doing online tests and finding that they display some autistic symptoms.
Limited Resources
Diagnostic expansions have created competition for limited resources.
A diagnosis unlocks access to a wide range of treatment and therapy resources. Many children who are not autistic could still benefit from these services, such as speech therapy and accommodations at school, such as personalized education programs and extra time for exams.
For adults, it can bring workplace accommodations. These advantages have encouraged more people to seek out testing and diagnosis.
Profoundly autistic people cannot advocate for themselves. “They have got to be represented generally by their parents or other people who are providing care for them,” Lord said.
Is There a Harm in Diagnosis?
The question of there being harm in diagnosis was raised by neurologist and neurophysiologist Dr. Suzanne O’Sullivan in her book “The Age of Diagnosis.” She wrote that people who are only mildly affected by autism may have less to gain and more to lose from receiving a diagnosis.
She raised the concern of “diagnostic creep,” which occurs when diagnostic criteria broaden to include more people, particularly those with milder symptoms.
For children in this group, an autism diagnosis carries the risk of making them feel less motivated and in control of their own lives—because they may internalize the idea that they have a developmental disorder.
However, Olivia Hops, an autism self-advocate who was diagnosed as an adult, told The Epoch Times that her diagnosis gave her more compassion and grace toward herself.
Before she was diagnosed, she often felt frustrated for not being able to outgrow having meltdowns or needing days to recover after socializing. Learning that those tendencies stemmed from being autistic gave her relief.
At the same time, she reflected that her life might have been very different had she been diagnosed earlier. She may not have pursued certain challenges—such as working with major sports leagues or starting her own business—if she had seen her diagnosis as a barrier.
