Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Autism, Identity First Language, and Identity


Amidst the pallette by Donna Williams Ego SYNtonic means “identified as part of self”. Ego DYStonic means “one has these conditions but doesn’t experience them as part of self”. Autism is not the 2D, linear, static collection of relatively homogenous stereotypes that many on both the culturalist and the curist sides proclaim. Autism is actually 3D, non linear, dynamic and is not one condition but a syndrome, an umbrella term, made up of quite different pieces, ‘fruit salad’ that collectively present as the person’s ‘autism. I first wrote about the Fruit Salad Model of Autism in 1995 in Autism, An Inside Out Approach and then expanded on this model in 2005 in The Jumbled Jigsaw.

My autism dances with my personhood… and my personhood must also dance with my autism yet whilst not separable, nor are they interchangeable with each other.

Within a person’s autism fruit salad can be any combination of a diverse range of sensory, sensory perceptual, communication, information processing, health, personality and mental health differences/disorders. Some of these are more likely to be identified as ego SYNtonic – part of selfhood, others are more likely to be ultimately experienced as ego DYStonic – non self, and experienced as disability, impingements or restrictive or even counter to their selfhood.

Most personality disorders are ego SYNtonic, the person identifies self with their personality disorders… ie Obsessive Compulsive Personality Disorder (OCPD, which is not OCD), Avoidant Personality Disorder (AvPD), Dependent Personality Disorder (DPD), Schizoid or Schizotypal personality disorders etc. ELECTIVE Mutism (voluntary as opposed to Selective Mutism which is involuntary), Fixations, Stimming (Self Stimulatory Behaviours, not to be confused with Tourette’s tics) is another example of something usually ego SYNtonic. Personality disorders, fixations and/or ‘stims’ can sometimes work wonderfully for the person, but other times it leaves them struggling to function, be self supportive or leaves them highly vulnerable and overwhelmed. Personality disorders can be tamed into more functional levels but you are not trying to cure anyone of the personality traits they naturally have, just helping them get them into better balance.

Exposure Anxiety, Obessive Compulsive Disorder (OCD, which is not OCPD), often also Tourette’s have phases where they are ego SYNtonic where the person voluntarily lets the EA or OCD dictate their lives, or the tics don’t bother them. But as these anxiety/compulsive disorders become too full blown, too restrictive or overwhelming these usually shift from being ego SYNtonic to being ego DYStonic… no longer experienced as part of self, or constantly swinging between syntonic and dystonic (ie with Exposure Anxiety the ‘battle to join the world’ and the simultaneous ‘battle to keep the world out’) which is confusing to the person, their environment and can be extremely taxing on all levels. Once part of one’s autism ‘fruit salad’ shifts to being ego DYStonic, it is too late to easily turn that condition around. Things like OCD and Exposure Anxiety can be turned around but it is a long haul with the right tools to do so.

Then there’s things like agnosias; faceblindness, meaning deafness, meaning blindness etc, or Selective Mutism, which can be ego syntonic or ego dystonic… take faceblindness… usually ego syntonic… but take Selective Mutism or language processing disorder may be experienced as far more restrictive once the person understands that language DOES have meaning, or where the person with Selective Mutism is a social personality and desperately wants to verbally communicate that their EXPERIENCES of their conditions can shift from ego SYNtonic to ego DYStonic and the person feels trapped with their disability.

Other conditions like Speech Apraxia, which Temple Grandin overcame by age 4, depression, Generalised Anxiety Disorder, Panic Disorder, are usually experienced as ego DYStonic, so the person commonly feels glad to overcome or manage them without feeling any loss of self as a result. And yet a person with autism who has severe Speech Apraxia, depression, GAD and Panic Disorder may present as significantly more ‘severely autistic’ before they overcame or fully managed these parts of their ‘autism’.

We used to be ignorant and think Autism was infantile psychosis, or a form of severe emotional disturbance, or a manifestation of severe mental retardation, and then just as ignorantly we culturally declared it as one singular ‘thing’. But Aspergers SYNDROME and Kanners SYNDROME, which we now just call Autism were syndromes. And syndromes are by definition COLLECTIONS of things that collectively present as the syndrome described with a singular, ‘umbrella term’ – ie autism.

Today we understand each person’s autism is the product of their own combination of very differing ‘fruit salads’. And how each person identifies with or counter identifies against each named or unnamed ‘skill’, ‘talent’, ‘challenge’ or ‘disability’ within that fruit salad differs.

A whole ‘autism fruit salad’ package can be experienced as completely ego syntonic (ie Temple NOW experiences hers largely ego syntonic but only after ridding herself of Speech Apraxia by age 4 and medicating her depression and Panic Disorder). Or it can be largely ego dystonic if the person feels extremely frustrated, disabled by it, or feels it contorts or supresses self expression and self help. Then there’s people who have parts of their autism they experience as ego syntonic and parts they experience as ego dystonic… even Temple experienced being non verbal as ego dystonic, same with her depression… she wanted those parts cured… but her OCPD, solitary/schizoid nature and her idiosyncratic mind she values as ego syntonic, as self. In other words THATS how ignorant and archaic the whole culture/cure debate actually is!

Person first language allows for these shifts. The problem with ‘Identity First’ language is that the person is expected to experience their entire autism ‘fruit salad’ as ego syntonic, and fact is that only some on the autism spectrum will. Even if others find positives their what is ego dystonic does not automatically make these experienced as part of self even if other parts of one’s ‘fruit salad’ are. So it is illogical if not mentally and emotionally controlling and confusing for any pressure group to pressure an entire population into feeling they must naturally all experience their entire autism fruit salad as self, and that if they don’t that they are either misguided or have been brainwashed but curists.

We are entering 2014 and its time we all moved over investing and regurgitating from the outdated, ignorant, archaic, stereotype based 2D, linear meme of ‘the autism spectrum’ and embraced autismS as umbrella terms for 3D clusters of diverse ‘autism fruit salads’, each with different underlying causes, different associated strategies and adaptations, and most importantly different and dynamically shifting patterns of identification and counter identification. It is time we accept the humanity of helping where possible to set people with autism free from whatever parts of their autism they are unable to identify with as self whilst simultaneously helping them to embrace, navigate and modulate those parts of their autism they do identify with as self. But most importantly its time we set people with autism free of the dictatorial near fascist word police, identity police, who step forward to claim that all people must experience their autism, or their autism meme, exactly as they do.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

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