What is Autism?

Looking at different cultures and time periods with today’s nomenclature, we can identify the same neurological differences and traits that form what we now call autism throughout human history. Autism itself is definitely not a new phenomenon, but the way it is defined is in constant evolution.  Researchers have realized, for example, that many people slip between the cracks of traditional tests because of their culture, their gender, their ability level, or their social environment.

For example, Canadian children are generally expected to look people in the eyes as a proof of their attention, but in some families and in several cultures, direct eye contact is considered impolite.  In such circumstances, it would be impossible to use this trait to identify an autistic child.  In a similar way, a very shy young girl may not alarm her parents.  A child who quickly learns to mimic their peers, masking their autistic traits, may also go unnoticed.  In the same vein, it may be assumed that a person who cannot speak doesn’t understand language, and that another, who isn’t capable of controlling their body to accomplish simple tasks, is not willing to.  Even with today’s clear criteria, autism isn’t always easy to diagnose, especially since concomitant conditions, such as intellectual disabilities, anxiety, ADHD, depression, OCD, CPTSD, bipolar disorder, borderline personality disorder, etc often accompany this neurodevelopmental divergence.

The word autism, from the Greek autós, was first coined at by the Swiss psychiatrist Eugen Bleuler, who was working on defining schizophrenia.  The core meaning, “withdrawn within oneself”, inspired the Soviet psychiatrist Grunya Efimovna Sukhareva, when she started writing about six different patients she had seen at a Moscow clinic, all of whom would perfectly fit today’s description of autism.  Sukhareva’s 1925 article is impressive, but was unfortunately overlooked until recently.  It is quite possible that the more famous Hans Asperger read it, but he never credited her when he published in 1944 about the autistic traits that would later bear his name.

Starting in 1938, Austrian-born American psychiatrist Leo Kanner observed and described eleven young patients on the autism spectrum  (eight boys and three girls), about whom he published a study in 1943.  Most of today’s knowledge about autism stems from Kanner’s research.  He was also among the first American psychiatrists to consider child patients as full human beings and to worry about their treatment in institutions.

Over the years, many researchers have worked on identifying factors that may cause autism, and finding ways to prevent or cure it.  The consensus at this point is that autism is a neurodevelopmental condition.  It is not a disease that can be cured.  The potential causes are still poorly understood.  The objective, when helping people on the autism spectrum, should be to treat concomitant issues and to increase their quality of life and happiness.

The DSM (Diagnostic and Statistical Manual of Mental Disorders) is a listing of all currently recognized mental conditions produced by the American Psychiatric Association and used in many different countries, including Canada.  The fifth and most recent edition of the DSM was published in 2013.  Autism is presented as autism spectrum disorder (ASD) and encompasses conditions which previously had their own entries:

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• Asperger’s Syndrome (AS, Asperger’s, Asperger’s Disorder, AD)

• Autistic disorder (AD, autism, classic autism)

• Childhood disintegrative disorder (CDD, Heller’s syndrome, disintegrative psychosis)

• Pervasive developmental disorder – not otherwise specified (PDD-NOS)

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One of the most recent developments in the history of autism is self-advocacy, a movement created to push for a more understanding and inclusive society for the neurodivergent.  Self-advocates are adults from all parts of the spectrum who can express what it means to be autistic from first-hand experience.