From Clinical to Cultural or not

This very attitude hurts. It hurts the very people society is supposed to serve and it hurts the evolution of the very fabric of society which exists to expand and contribute. It marginalises people, rather than bringing everyone together in celebration of partnerships and interrelationships – makes for dependence rather than interdependence and worst of all keeps the autistic community reliant and fearful of the very structures in society that are supposed to aide and protect.

Autism or Autistic/Autist? Community, Culture, sub human group (akin to racial, LGBTQ, and other marginalised or minority groups)? And, why language is so important.

In researching the word, the ism, the noun, adjective – ultimately the ‘label’ one can find nothing positive or relative to this group of human beings, of which me and my family are a part and of whom hundreds, if not well into the thousands I/we have met in the physical realm. It is as if the label, the word, has been kept into an isolation of ideology to define us, rather than allowing us to define ourselves as a collective whole. 

[If one researches isms, for example in the English language, this is the relationship to aut-ism you will find – in searching for the meaning of the root causation/correlation of the word autism: – representing a philosophical, political or moral doctrine or a belief system. In selecting terms for the list, I have deliberately avoided any word which apply ism to a personal name, so that Marxism doesn’t count although it is otherwise an ideal candidate for the list. I also excluded isms which do not refer to a specific belief system, such as impressionism (an artistic movement) or alcoholism (a disease). Despite these omissions, enough remain to leave an ism in every pot, including beliefs about proper government, God, and the nature of existence itself. Of the terms on the list that are of a religious nature, most are Christian, which is not unexpected, but I’m open to adding isms from other world religions. © 1996-2014 Stephen Chrisomalis ]

So, if someone who happens to not know anything about the word label and who came across an individual or a group of within society, what might be the first thing that ‘someone’ does? Go on the internet, look up the noun and the adjective to find out the dictionary meaning and historical meaning of the two words. I just did that. Not because I want to know about me and my family in the realm of the language of the words autism and autistic – rather, what has changed since the past twenty-five years since Donna Williams came forward with her ground breaking books ‘Nobody Nowhere‘, ‘Somebody Somewhere‘ and ‘Like Color to the Blind‘?

In my search I specifically wanted to look up the words to see if they continue to be predominantly related to the myths and negative propaganda developed by behaviourists and other clinical stake holders. And, what I found was more of the same and nothing to demonstrate or illustrate the emergence and expansion of the ‘physical beings’ of the community itself. Even the word Autist has fallen into the pot of what would be perceived as negative associations and directly linked right back to psychiatry and the words autism and autistic. Nowhere are there clues relative to the actual culture as being an autistic culture. 

In looking up Autist - I came across this at the top of the search engine - more derogative associations:

Autist

The singular form of autistic. Usually in reference to those who play sandbox games such as minecraft other than actual autistic peoples.

Billy from down the street is an autist

#downie #retard #autism #autistic #plebeian #faggot

In looking up social cultural related aspects of our community I found more circular looping relating back to the ism and the negative propaganda about how we need “support services and therapies, and how autism affects how we define personhood.” Then I came across a website that shared information leaning toward the Autistic Culture/Community as potentially a group of people self identified. Referring to ‘different types of communities‘ and ‘friction between the different autistic communities‘.

In my conclusion of what limited research time I have, I realised nothing has changed on the surface, but MUCH has changed in the physical reality of the Naturally Autistic ANCA world and outreach to the world over the past two plus decades. Meaning, that whilst we advance our platform to support the autistic community to find a legitimate and inclusive place in society, many would rather not see this occur. This was definitely underscored in my investigative research, albeit I had hoped to read ‘shifting trends’ away from the archaic forms adopted in effort to understand one group of human beings and to learn directly from this group. 

The reason which led me to do some research and investigating rather than following social media take on autism and autistic people, culture, community – I wanted to know what are the stakeholders doing behind the scenes and how is our culture being influenced in all realms of society – had that changed since the 20th century and before or not? In fact, my discovery suggests that noting has changed, rather there is an intermingling and tangling of ‘suggestive rhetoric‘. The what I hoped to achieve (re: learning from this group of autistic human beings) further demonstrated a ‘stake holder’ attitude to me and further substantiated why the urgency to continue to grow, unite and expand the global autistic community with all its unique offering to society as a culture and not as a political football with individual organisations vying for funding dollars to maintain their own existence and mandate. 

This very attitude hurts. It hurts the very people society is supposed to serve and it hurts the evolution of the very fabric of society which exists to expand and contribute. It marginalises people, rather than bringing everyone together in celebration of partnerships and interrelationships – makes for dependence rather than interdependence and worst of all keeps the autistic community reliant and fearful of the very structures in society that are supposed to aide and protect. 

Listen in to my weekly broadcast with radio show host Kelly Green on Living with autism: 60 year journey to find out more about why we do what do at the ANCA World Autism Festival and the decades of life experience which led us on this path.

Copyright Leonora Gregory-Collura. All rights reserved, November 17, 2016

References: 

ism –

NOUN

  1. a distinctive practice, system, or philosophy, typically a political ideology or an artistic movement:
    “of all the isms, fascism is the most repressive”

autism –

NOUN

  1. a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
autistic –
Related forms:
autist, noun
autistic [aw-tis-tik] (Show IPA), adjective
autistically, adverb
unautistic, adjective
when researching the word autistic – the search refers one right back to autism
noun

1.

Psychiatry. a pervasive developmental disorder of children,characterized by impaired communication, excessive rigidity, andemotional detachment: now considered one of theautism spectrum disorders.

2.

a tendency to view life in terms of one’s own needs and desires.
Origin of autism

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Author: ANCA

Autistic adult - supporting autistic people and their families for 21 years with Naturally Autistic ANCA