Autism, Part 1: What You Need to Know

All this week on Family Anatomy Dr. Brian and I will be focusing on the experience of Autism. In this first part, I will be focusing on autism’s origins and essential features.

Let me begin with a brief history of the disorder. In 1943, Dr. Leo Kanner of Johns Hopkins Hospital, coined the term “autism”. However, for the next 40 years professionals considered autism to be a childhood form of schizophrenia. Early investigators highlighted a detachment from reality in these children. As a result, the idea that autism was an early form of schizophrenia made sense. However, we now know that autism and schizophrenia are two separate phenomena. Unlike people experiencing schizophrenia, persons with autism have not lost touch with reality, are not delusional, and do not experience hallucinations. Instead, children and adults with autism typically lack the cognitive abilities that allow them to develop age-appropriate social and communication skills.

It is interesting to note that it was not until 1980, and the publication of the 3rd edition of the mental health manual, the DSM, that a separate category called ‘autism” was first utilized. In addition, the diagnosis of “Aspergers”, a form of higher functioning autism, was not in the diagnostic manual until 1994. As such, it is little wonder that these diagnoses have grown in the publics’ consciousness in recent decades and that their prevalence has skyrocketed. Last week the U.S. Center for Disease Control released statistics showing that 1 in 91 children, including 1 in 58 boys, in the U.S. have been diagnosed with autism disorders.

What do we know about the autistic experience? Children and adults experience deficits in social skills, communication skills and behaviour.

Social skills deficits are perhaps the most prominent feature of autism. Although it may not appear this way, people with autism often desire to have social relationships. Unfortunately, their lack of social skills create such a high degree of anxiety that being away from people and “in their own world” can often be preferable. Autism makes it difficult for people to read social cues. They often have difficulty predicting what other people are thinking or feeling. They also have trouble understanding contextual cues such as a person’s body posture, voice tone, or facial expression. As a result, your experience of an autistic person may be that they are not looking you in the eye, or that their facial expression does not match the situation they’re in (i.e., they may be smiling when you are disciplining them), or they do not respond as expected to a hand held out to shake hands, or arms held out to solicit a hug.  People who experience autism are less likely to understand the social cues we take for granted.

Difficulties in communication or language are also seen in autism and this is often due to a developmental disability or what used to be called “mental retardation”. Approximately two thirds of kids diagnosed with autism also have a developmental disability. Kids with Aspergers disorder are typically higher functioning in that their language and intellectual abilities are not delayed. Nevertheless, people with a higher functioning Aspergers disorder have difficulties with pragmatic communication skills. That is, while their vocabulary is as well developed as their peers, they misinterpret what other people say to them because they lack the ability to understand contextual cues. For example, they are likely to take what is said to them literally (i.e., they may leave if someone jokingly says, “Oh, come on now. Get out of here!”). For these same reasons, they will have a hard time understanding sarcasm or irony.

The behavioural difficulties seen in kids and adults with autism are thought to result from the high levels of anxiety they experience when trying to fit into a complex social world that they are not able to handle. In an effort to reduce anxiety, people with autism try to minimize change. Their insistence on sameness means that they may react strongly when routines are changed, adhere strictly to the rules as they know them, and play with toys in a repetitive, predictable manner. They also tend to withdraw from the wider context around them to avoid being overwhelmed. Lastly, they may focus on a tiny part of an object such as the rim on a toy car or develop great knowledge on a specific topic to the exclusion of many other things.

To sum up, we have only begun to understand the experience of autistic people. Generally speaking, it consists of a severe difficulty in the ability to develop social and language skills. High anxiety around their inability to fit in with others socially, then leads to a desire to withdraw from others, an insistence on sameness and a narrow though deep focus on particular interests.

Tell us your experiences with autism. We’d like to hear your story.

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