Ontario Adult Autism Research and Support Network - OAARSN

What is Autism?

Autism is a complex and still mysterious condition, despite a great deal of research since 1990. There is no single cause and no simple cure and people who live with Autism may have unique clusters of symptoms. 

A puzzle has been widely used as an image of Autism. Early advocacy and support groups often used it in their logo, perhaps with a missing piece. But a puzzle is apt only in the abstract sense that Autism is intriguing to others, not to the people who live with it. Only recently have we learned from articulate adults on the Autism spectrum that they feel insulted by being equated with a puzzle or by the suggestion that they are missing a vital piece. 

For many years, Autism was diagnosed on the basis of behaviours that were observed to be different from those of normal children, and psychiatrists and psychologists were responsible for diagnosis and treatment. Now Autism is considered more as a biological and neurodevelopmental disorder, though various specialist insights are needed to understand its complexities. 

The condition we call Autism was identified separately in 1943 by two Austrian-born psychiatrists, Leo Kanner in Baltimore and Hans Asperger in Vienna. Because the children they treated seemed indifferent to other people, the term Autism was used, from the Greek autos for self. Kanner had the greater influence in North America where the form of Autism he described became known as classic Autism or Kanner’s syndrome. Asperger’s work was little known in the English-speaking world until the 1990s, when the term Asperger’s Syndrome began to be applied to milder forms of Autism in people whose communication abilities were less affected. 

Research reported in the 1990s helped us to understand that Autism, in its full-blown form, involves a triad of impairments–in social interaction, communication and the use of language, and limited imagination as reflected in restricted, repetitive and stereotyped patterns of behaviour and activities. People who combine all three impairments to a marked degree were said to have the classic form of Autism, also termed Autistic Disorder. But larger numbers of people may have only some of the traits of Autism. The idea of a spectrum or continuum of autistic disorders (ASD) included persons who have some if not all the symptoms of Autism, sometimes in combination with other disabilities. 

In 2013, a new Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was published, in which most forms of Autism (including Asperger’s) are folded into “Autism Spectrum Disorder” (ASD). The criteria for diagnosis were changed from those in DSM-4 (1994) and its revised version (2000). It is thought that about one fifth of the people being diagnosed with some form of Autism up to 2012 would not qualify for ASD from 2013 with the new criteria. But that still means that at least one in every 100 people is on the Autism spectrum, with prevalence as high as one in 55 in some countries.

Although the DSM is the authority for diagnosis of Autism, the condition is now recognized primarily as neurodevelopmental, in its severe forms affecting more than social interaction, communication and language, and restricted patterns of behaviour. 

A pervasive explanation of Autism as a whole-body accumulation of symptoms was proposed by the pediatric neurologist Martha Herbert: “Genes and environment interact in the fetus or young child, changing cellular function all over the body, which then affects tissue and metabolism in many vulnerable organs. The interaction of this collection of troubles leads to altered sensory processing and impaired coordination in the brain. A brain with such problems produces the abnormal behaviors that we call Autism.” (Quoted by Jill Neimark, Discovery Magazine April 2007; Martha Herbert, The Autism Revolution: whole-body strategies for making life all it can be, Harvard Medical School, 2012.) Whole-body strategies have been known to reverse Autism in some children when started early. Adults can be helped to cope with pain and agitation when specific symptoms are eased. But adults with the full range of whole-body symptoms continue to live with severe Autism and have complex, high needs.

People with severe Autism may combine core symptoms with other difficulties in unique combinations of their behavioural, biological, environmental, gastrointestinal, sensory and social-communicative systems. Other symptoms may include hypersensitivities and reactions to any or all sensory stimuli, inability to speak or other difficulties with language, intolerance of various foods and drugs, sleep disorders, seizures, low muscle tone, movement differences, unusual fears, and obsessions with routines and order. The presence and severity of these symptoms vary in individuals. Those most severely affected may express their pain and frustration in behaviours that can hurt themselves and others. Some may be diagnosed with other neurological disorders as well—including Epilepsy or Catatonia–or mental health disorders such as Depression, Bipolar Disorder, Anxiety, Obsessive-Compulsive Disorder, Disruptive Behavior Disorder, Conduct Disorder, Tourette’s Disorder and Schizophrenia.