Donna Williams’ Blog

Ever the arty Autie

First ‘An Autistic’, now ‘A Non-Verbal’ – you’ve got to be joking?

December28

Donna Williams aged 12 I really would have hated to be called “A Non-Verbal”.

I cannot bear the idea of my entire personhood from age 0-11 being whittled down to being “A Non Verbal”. I was echolalic to age 9-11, the unintelligible self entertainment chatter oflogorrhoea was fairly usual for me, then had one sided speech, then litanies and you couldn’t have a conversation with me until my early teens. I hated being introduced as feral, psychotic, disturbed and I hate being referred to clinically like A Non-Verbal —- sorry, a human being, a Donna.

My family never said ‘non verbal’. My mother would always tell people ‘oh she just mutters to herself’, or ‘it doesn’t mean anything’, or ‘she can’t understand you’ or ‘she doesn’t make any sense’ or if I was not speaking (I also would go selectively mute for days, weeks, sometimes months) she would say ‘she’s not speaking’ (as opposed to she can’t speak). I preferred that because I was the SHE not ‘A Non Verbal’.

And by NOT defining me as ‘A Non-Verbal’ I could still imagine myself as one day being a communicator and I could see I was communicating already through songs, through actions, through funny faces, through my body reactions, later through typing, then later through art…. and if we accept that ‘all autistics want to be introduced as An Autistic‘ or now ‘A Non-Verbal’, what comes next, ‘A Non Communicator’?

Someone being non verbal is fine, just ‘A Non Verbal’ in my view is not… I could never justify trying to define the person ENTIRELY AS their disability. In other words I feel I must always acknowledge they may not identify their entire selfhood with being non verbal,… so ‘he’s non verbal’ feels reasonable to me or ‘he’s a type-speaker’ is even better! or ‘he’s a signer’ or ‘he’s an artist’ or ‘he’s still working on communication’ or or or … but I avoid the boxing of people and forcing upon them presumptions they completely identify selfhood by their disabilities.

So what would you call someone who doesn’t have verbal speech? I have worked as an autism consultant with over 1000 people with autism, most of them functionally non verbal, and I have never introduced them or referred to them as non verbal. So it really should only come up when someone is talking to them and is perplexed they don’t answer verbally, in discussing their communication disorders with a speech therapist, or if they are lost in the community. Even then I would say ‘presently non verbal’ because I want to preserve that person’s right to identify as someone who might still develop verbal communication. I have known people in their 30s who never had functional verbal speech then began to speak or type speak. They got that when their families stopped defining them as non-verbal and became curious as to whether in fact there was still the chance they might acquire verbal speech – they began to presume competence, not just as a person, but as a verbal person, even though they’d never yet proven that capability.

You could say he/she has autism or he/she is autie (as in autie as adjective) and if necessary clarify the person doesn’t use verbal speech yet. The doesn’t and the yet means it is still possible they might.

The term ‘verbal’ comes from ‘verb’ meaning ‘word’, and applied to written/typed and spoken language alike. Type speakers are speaking with words all the time. Yet when we refer to those who don’t verbally speak as non-verbal we are denying not only their capacity to ever identify or strive for verbal speech but are also in complete denial of their ability or potentially unaffected and untapped ability to use typed speech.

I know there are adults diagnosed on the spectrum who had functional speech throughout their childhoods but who regressed or quit speech in their teens or adulthood after learning of their diagnosis or being newly diagnosed because they felt having learned speech was ‘not them’, or not a true part of their identification as ‘An Autistic’. For these people speaking may well be harder than typing, emotionally, socially, even cognitively, but also in terms of their identity. They have become invested in the self image of being ‘non verbal’. I’ve met them, and they are numerous among those in the ‘Autistic Pride’ movement.

This is a decision that their natural world was non-verbal and maybe as people with Avoidant Personality Disorder or Dependent Personality Disorder, who tended to Selective Mutism or Schizoid Personality Disorder where it is natural to avoid intimacy it was their natural world. If they chose to return to it this is entirely their choice. Many in this group choose this spend their days on the computer where typed communication is their norm (see ‘geek‘, computer addiction, internet addiction). So its understandable that for them verbal speech can be largely superfluous, not worth the effort and they have counter identified against it, they see verbal speech as ‘ego dystonic’ (counter to self) not ‘ego syntonic’ (part of self).

But such people cannot justifiably extrapolate from that to others who have not had those choices, particularly those who are non-verbal and do not yet have typed communication or reliable gestural signing. Just like with Tourettes, some people see it as part of self, ‘ego syntonic’, others are tormented by their tics and experience them as ‘ego dystonic’ (counter to self). And the same is true with communication disorders. Just because some with Selective Mutism may find that communication disorder to be ‘ego syntonic’ (part of self) doesn’t mean that those with severe speech aphasia, severe Apraxia, logorrhoea or involuntary echolalia, with or without associated secondary Selective Mutism experience their lot the same way. For them being non verbal may well be ‘ego dystonic’ (counter to self) and they would give anything to develop functional verbal speech.

Can anyone seriously tell me that all type speakers who have been functionally non verbal ALL their lives personally identify being non-verbal as part of their selfhood and are choosing to introduce themselves as ‘A Non Verbal’?

Sorry, but I don’t eat Bullshit Sandwiches.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

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