What’s in a word? Part 1

I am interested in words, for a while a lot of my photographic work utilised text.  I find its form, shape and meaning all very interesting.  It is because of this interest that I decided to go on a hunt, a hunt for “AUT”.

Autsim is a word we have come to know well but not understand.  Its effect on our lives has been total in its dominance.  It is a word that has the power to mean everything and yet describe nothing.

Upon hearing this word many parents start to panic.  Thoughts of rocking, monosyllabic adults alone in rooms enter their thoughts or of Rainman (by the way he was not autistic, that he was, is a common misconception) style brilliance and savant like behaviour.

Neither of these describe the full spectrum of this condition, most people lie somewhere in between.  It is a spectrum as there are so many shades and variants within it.  There are low functioning, moderates, high functioning, and PDD-NOS. Each with their own unique set of issues and difficulties.

So what of the term “autism”?

Well as many of you will probably know, it comes from the Greek “autos” meaning self and ism meaning, in this context, pertaining to a particular “characteristic or behaviour” (www.freedictionary.com) .  Although the word is derived from Greek it was not the Greeks who first coined the term autism.  No, that did not happen until 1911 when the Swiss psychiatrist Eugen Bleuler first used it to describe a particular disturbance in Schizophrenia:

an extreme withdrawal of oneself from the

fabric of social life, but not excluding

oneself (http://www.pediatricservices.com/prof/prof-26.htm).

In 1943 and 1944 respectively,  Leo Kanner and Hans Asperger both separately published works. Kanner conducted a case study of 11 children who seemed to share a number of common characteristics that he suggested formed a “unique ‘syndrome’ not heretofore reported.” The article, “Autistic disturbances of affective contact,”  characterized the children as possessing, from birth, what he called an “extreme autistic aloneness.”   Asperger published “Autistic psychopathy in childhood.” The article demonstrated a case study of several children whom he described as examples of “a particularly interesting and highly recognizable type of child.”

“Both Kanner and Asperger believed that the children suffered from a fundamental disturbance that gave rise to highly characteristic problems” (http://www.pediatricservices.com/prof/prof-26.htm).  Both of them also chose the word autism to explain the chronic aloneness they felt.  The common feature of this disturbance was that the children seemed unable to entertain normal relationships with people (ibid).  Kanner’s study landed up being the work most quoted and Asperger’s work became largely ignored (maybe due to it being written in German during World War two) and then assumed to be written about a completely separate type of child, hence the use of the term Aspergers to describe a child with high functioning autism like qualities.

We of course now know that autism is a spectrum disorder and that Aspergers is most likely a part of the same disorder.  In fact last year it was discussed getting rid of the distinction altogether by the powers that be and just having Autism Spectrum Disorder.

In 1944, American Bruno Bettelheim directed the Chicago-based Ortho-genic School for children with emotional problems and through his “research” he decided that essentially it was the parent of the autistic child’s fault and that they did not engage with the child, show love or in extreme cases, even want the child to exist (http://en.wikipedia.org/wiki/Bruno_Bettelheim).  Of course his work had been largely discredited now and let’s be honest, many of us autism parents probably mollycoddle our “special” kids rather than the opposite, but I am not convinced that these damaging views were not passed down through the generations and still pervade in public consciousness today.  Who among us have not felt the pang of self-hate for our children’s problems, or felt the eyes of other parents burning into the backs of our heads as our children meltdown in front of them.  We have the residual from the 50s and 60s belief in “refrigerator mothers”, which was a direct result from Bettelheim’s belief that it is an unloving mother’s fault her child did not engage in the “typical” way.

There have been numerous studies surrounding autism since the latter part of the twentieth century and some red herrings have shown their face too.  Who could forget the furore caused when Dr Andrew Wakefield massaged the results of his research to show a link between autism and the MMR jab (http://www.kairos2.com/MMR-Autism-link.htm), indeed we are still paying for this now with the latest meningitis outbreak in Swansea threatening a nationwide epidemic.  But the truth remains that they still don’t really know what causes it or whether it can be curable.

The thing is, autism is not just the bad stuff, yes it causes anxiety, stress and pain but it also brings joy and hilarity.  The important thing is how you deal with it


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