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The Missing Piece in Autism Diagnosis

Ezra Bucur

Staff Writer

Via Natalia Nesterensko

Autism, known officially as Autism Spectrum Disorder or ASD, is a fairly recent research topic. The first person to be formally diagnosed, Donald Gray Triplett, recently passed away at the age of 88. Despite its short existence, the perception of autism rapidly evolved. One prominent example of this would be the condemnation of the “r-slur,” used originally as a diagnostic criteria. Another example, more ingrained within the medical field, would be the “Asperger's syndrome” diagnosis. Up until the publication of the DSM 5, an individual could be diagnosed with it, even if its origins traced back to eugenics carried out by Nazi Germany. Hans Asperger, who this diagnosis was named after, worked for the Nazi government and was responsible for outlining the criteria for Asperger's syndrome. In his mind, those who were considered “intelligent enough” had to be spared from the “child euthanasia” campaigns. As of 2013, Asperger’s is no longer a diagnosable condition and, along with other disorders, is included under the ASD diagnosis.

Nowadays, autistic individuals themselves communicate their grievances and experiences to the general public. This is mainly done online where discussions of autism and representation run rampant. The online community has significantly contributed in raising awareness about topics such as the use of the r-slur, personal experiences with autism, or the dangers of organizations such as Autism Speaks, which portrays autism as a harmful disease. Through the Internet, autistic people can share their experiences in early childhood, traumatic life events, and difficulties fitting in with imposed social norms.

Unfortunately, the existence of this online space, like many others, can also have negative consequences. One such example, which relates not only to autism, but to a generalized popularization of mental health discourse, is disinformation. Since many who engage with mental health content are not professionals, myths surrounding “detecting” mental conditions such as autism or even personality disorders form. The virality of social media causes these falsehoods to spread faster than peer reviewed clinical research. Additionally, bullying campaigns have started to prop up as a result of the growing discussion surrounding neurodivergence. A prominent example is seen in  pages such as “r/fakedisordercringe” on Reddit, where people, often aged between 13 and 16, are mocked for being “fakers.” Ironically, while they mock these teenagers for not getting a professional diagnosis, they are oftentimes not medical professionals either.

Interestingly, through viral trends, videos, and posts, it seems a new archetype of autism was created. This time, rather than emerging from albeit flawed clinical research, it comes from individual testimonies and anecdotes. Whilst neurotypical people, whether medical professionals or not, often struggle with understanding autistic perspectives, letting a neurological condition be defined by current trends is also counter productive. In the mind of psychologists, autism means a young socially awkward white male obsessed with math. Their stereotyping often makes these clinical tests expensive and seemingly inaccessible. Many young people in unapproving families have turned to self diagnosis as a way to explain the way they interact with society. The conclusions drawn from self-diagnosis then spread online, creating a different stereotype surrounding autism. This time, autism means specific stims, “cute” hyperfixations, and an extensive stim toy collection. Instead of being  taken seriously, it is now infantilized in the view of the general public, reinforcing the belief that autism is overexaggerated and simulated by anyone who is not a cold robot.

These two stereotypes conflict with one another, yet explain one another. Since the medical field promotes the exclusionary narrative that neurodivergence is for “genius” little white boys from upper middle-class families, akin to Hans Asperger’s ideas, online movements try to include everyone in the diagnosis, rendering the word devoid of all meaning. The flaws of medical diagnosis become “addressed” with self-diagnosis, rather than changing the clinical perspective and making assessments accessible. Whilst many people who self-diagnose do end up needing professional help for their symptoms, oftentimes not having another person’s expertise can lead to improper solutions for these problems.

Oftentimes, the reaction one gets when announcing they were either diagnosed or are getting a diagnosis is one of uncertainty. You get told you do not “act autistic” enough, or that you are simply malingering as a means to get attention. However, this does not mean that you will be seen as neurotypical, and be shielded from ableist bullying. Not only are autistic people often socially ostracized by their peers, but the mere fact of being referred to as stereotypes implies the lack of knowledge regarding the topic. Destigmatizing the diagnosis of autism, as well as other conditions related to neurodivergence from its exclusionary origins is essential, yet it must also remain consistent enough to meet the actual needs for help and support.. Whilst autistic people have been compelled to listen to neurotypical people their entire lives, redefining the public understanding of these conditions may be the only way to truly include those who are neurodivergent.  



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