What Autism Is And What Autism Is Not

What is Autism? Actually, I am reluctant to provide a solid definition of what autism is. Science and the Internet are abuzz with so many extremely vague and very different definitions.

I’m not about to deliver the one and ultimately correct definition of autism. It is my intention to take a stand: if you have to define what autism is, then you should do it in a way that respects autistic people and takes them as they are.

I personally have come to the conclusion that it is not so important what autism is and whether autism is – but that is a path that everyone must walk for themselves.

What Autism Is Not What Autism Is
Autism is not a disease. Autism is a way of being, a state of spirit, a disposition.
Autism is not due to psychological illness. Autistic people are just so. Today, this suchness is mostly explained by the brain of people with autism being different from the non-autistic, so autism would be an “alternative brain design”, an unusual neurological “wiring”, a different kind of perception processing. From this perspective, the concept of “ancestral neurological diversity”: no two brains are alike and autism is a part of that diversity.
People on the autism spectrum are not all the same. Non-autistic people are different and individual, why should autistic people all be the same? Autism is a wide spectrum of different abilities, lifestyles, beliefs, etc. Some think that autistic people are different from non-autistic people, because they follow less the social peer pressure, which requires a certain adaptation.
Asperger’s syndrome and autism are not clearly distinguished. All the people who have a diagnosis on the autism spectrum (early childhood autism, Asperger’s syndrome, high functioning Autism, atypical autism…) are too diverse, and that makes it impossible to divide autism into two (or three or four) categories. This is an arbitrary criterion, e.g. the number of points on an IQ test. A person with 80 IQ points is considered to be “high-functioning”, one with 79 points as “low-functioning”. Or in language: a child who speaks at two years of age gets Asperger’s syndrome diagnosis, and one that begins to speak at three years gets an early childhood autism diagnosis. But what relevance do these criteria have? Today autism is usually considered a seamless continuum, and maybe the different categories will be replaced by a diagnosis of “Autism spectrum” in a few years in the diagnostic manual.
Autism is not a consequence of any kind of education (keyword “Refrigerator mothers”). Autism is not the result of emotional neglect, emotional stress, abuse or trauma. The theory that autism was caused by cold, unemotional mothers emerged in the 1950s, when by default the blame for this has been pushed to mothers, if their children were not so, as society wished them. Today we know better: you can educate a non-autistic child as well as you want, it will never be autistic ;-)
Autism is not uncommon. Recent studies calculate more than one percent of the people to be on the autism spectrum.
Autism affects not only children. Autistic children will not suddenly disappear when they are 18. Autistic children become autistic adults.
There is no “normal” person in an “autistic envelope”. Autism is not separable from the personality of autistic people. Autism colors every perception. Autism affects how someone thinks, feels, sees, responds and interacts. To wish Autism would disappear means to wish the person were someone else.
Autism is not “curable”. Autism is not “curable”, because:

  1. Autism is not a “disease”.
  2. Even if autism were a disease, there would be no procedure to make autism “go away”, at least for some time.
  3. Even if this were possible, most people on the autism spectrum would not want to be “cured”, because autism is an inherent part of their personality and to “cure” their autism would mean the extinction of their personality.
Autism is not a tragedy. Autism is often viewed negatively, especially in autistics who do not use spoken language. Maybe it is because they are unable to express themselves. However, there are many who began to speak at six or even only twelve years of age and have clear memories of the time when they did not speak; and they see this time often in a neutral to positive light.Although people on the autism spectrum live in this society, in principle, in a hostile environment and autism is constantly pathologized, many of them view autism positively. Many autistics like to be autistic and would not want to be “cured”. One may be autistic and happy.
Autism is not a new phenomenon. The first detailed description of a child that we would describe today as autistic, was written in 1799 by Jean Itard ( “The Wild Boy of Aveyron”).
Autism does not mean not being able to speak. Most people on the autism spectrum use, at least now and then, spoken language; some speak very, very much. Children who are diagnosed with Asperger’s begin to speak at the usual age. Others begin to speak at three, others only twelve, and still others never speak, but communicate through images, sign language or the computer.
If an autistic person learns to speak, that does not mean that it is no longer autistic. Although at times it is sold as a miracle cure, many autistics begin at some point to speak without therapy. That does not necessarily mean that they will become normal people at some point – but using spoken language is already good enough.
Autism is not apparent. Autistic people look like other people. You would probably not tell an autistic person from a non-autistic if you were to meet one.
Autism is not a mental disability. There are many very intelligent autistic people. Even non-speaking people on the autism spectrum are often intelligent.
Autism does not mean giftedness. Presumably, the intelligence distribution on the autism spectrum is the same as for non-autistic people: some learn very quickly and others take a little longer. Everyone has his or her individual talents and weaknesses.
Autists do not necessarily have a special talent like Rainman (savants). Savants are people who have an extremely unusual talent, eg enormous memory performance. This is very rare. A few autistic people have unusual abilities so that they are called savants. Many others are not. There are also non-autistic savants, even if there seems to be an above average number of them on the autism spectrum. Many people on the autism spectrum have outstanding abilities, but they are less spectacular.
Autism does not involve a general rejection of social contacts. Many autistic people want to feel free to contact others, but do not know what could be a socially appropriate method of contact. Other autistic people do not want any contact with other people. Like all people, autistics also want to be able to choose, with whom they spend their time, when and how, and when they should rather be alone.
Autism does not mean “unteachable”. Autistic people learn. But they learn differently from other people, and the schools are geared to non-autistic people. Autistic people who need or would need often a customized learning environment in order to realize their potential. Nonetheless, most children and young people on the autism spectrum in mainstream schools and are often not labeled as such.
Autism does not mean autistics can not lead an independent life. Some people on the autism spectrum need a lot of support from others, others live entirely without “special” support.
One should also bear in mind: everyone needs some form of support from other people. None of us lives as Robinson Crusoe. It is important that even people who need assistance of any kind, can live self-determined.
Autism does not mean having no feelings. Autistic people have feelings for other people, even if one doesn’t neccessarily notice them. There are also many people on the autism spectrum who have satisfied friendships, partnerships and families – really with feeling.
Autism does not mean to have no imagination. Some people on the autism spectrum have a vibrant, creative and unique imagination, others are completely unimaginative. Like other people as well. The stereotype that autistics have no imagination, came up because they concluded that autistics find it difficult to imagine social situations and to estimate what might happen next.
Not all people on the autism spectrum think in pictures. While some people on the autism spectrum have very strong visual thinking ( many fine artists , but also engineers do so), there are others that do not. Others, such as Donna Williams, are acoustically oriented, that is, to words and music.
Not all people on the autism spectrum like numbers and math. There are autistic people who are great mathematicians. Richard Borcherds, a professor at the University of Berkeley and winner of the Fields Medal is one of them. But there are also many people on the autism spectrum who do not like math at all and have great difficulty with it in school.

So what is autism?

Autism as a construct

Autism can also be regarded as a construct. That does not necessarily mean that autism does not exist, but it does mean that autism is a cultural concept. In other cultures you call the people, which we call autistic, otherwise – or they are not sorted into a separate category.

Autism as a cultural construct means to be aware that it is our culture which makes a particular behavior a problem. And only in such a culture, there are autistics. And In this culture, they are disadvantaged and often need “special” support.

One Response to What Autism Is And What Autism Is Not

  1. Excellent article, puts a guiding light on the path and is certainly a step towards a more definitive answer ….. I totally agree that autism is not curable, it is not a disease and many people with autism including the famous Temple Grandin manifestly do not want to be “cured”, they would cease to be themselves ….

    Symptoms improve with a multimodal and comprehensive intervention, providing the opportunity for people with autism to function successfully in different walks of life. But they will always have autism as a unique stamp of their personality!! It’s not a cure we want, we want to accept them as they are and help them acquire skills that impact their quality of life without losing its beautiful essence.

    A hug!

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