Non-Verbal Autism, Identity and Power

Filed Under (Ableism, Communication, Uncategorized) by Estee on 14-05-2013

The Autism Acceptance Project (TAAP) will post a new announcement on its website about its forthcoming work and formation of a new board of directors. TAAP is an organization that is directed by autistic people, and facilitated by non-autistic supporters in order to reflect the concept of inclusion. As a mother to a child who has communication challenges, I am personally invested in autistic rights for the non-verbal populations. TAAP will encourage research and activities to enable the question of who is missing from autistic organizations and how might we reconsider the manner in which we organize in order to equalize power imbalances. For the aphasic community for instance, this is addressed. Yet the manner in which we have constructed (and essentialized) autistic identity remains problematic if we do not consider the broad scope of individual experience. For example, while some people (autistic or not) prefer to be on their own, other people do not wish to be. In autism, we tend to apply broad strokes to describe how an autistic person lives and thinks through labels. There are dangers in suggesting that all autistic people “prefer to be alone” as much as we assume autistic children need to be yanked into a neurotypical social world in order to be valued and included in society. The truth is in there somewhere, but usually between the two extremes. The point is, not every person is the same and we need to account for this in autism as we would for any person.

As part of my doctoral research, which will begin this fall, I will be studying emancipatory research and social organization for our community. With autistic folks, we hope to assist clinicians, therapists, educators, parents, caregivers to support autistic rights as one of our projects.

Allow me to share some extensive quotes from Carole Pound and Alan Hewitt’s Communication Barriers: Building Access and Identity for your consideration. I do hope that many others will engage and invest in research for our non-verbal/ communication-challenged populations:

“…an interesting additional challenge is that if language is the core of what makes us human, and the primary means of exploring new narratives of illness and disability, how do individuals negotiate personhood or the development of changed identities following sudden loss of speech, understanding, reading and writing? How does your own and others’ difficulty with understanding and using words impact on your ability to talk about and question fragile new forming identities with others who are also grappling with a concept at the edge of words? Given these difficulties, how much greater is the risk, as a language-impaired person, that your personal disability narrative will be hijacked by outsider stories constructed by families, professionals, researchers and the media?” p. 165

“Many people explore concepts of disability and identity by being exposed to and engaging with discussion of alternative representations of disability. New stories of disability can challenge internalised stereotypes offering a precious escape route away from the set of ‘tragic stroke victim’ or ‘courageous little fighter’ paths purveyed by mainstream media and disability charities. The means of accessing new narratives is not obvious when academic texts, articles, and website stories are hidden behind a veil of language.” p. 165.

“Meeting, supporting and just ‘being’ together are powerful experiences which, in many respects, transcend words. Meetings between people who share a common communication disability, but who each individually require different levels and types of communication support, are not without challenge. Negotiating communication support from non-language-impaired people, such as relatives, volunteers or health professionals, is an option but one which runs the risk of meetings being dominated and controlled by those who can speak and write. Notwithstanding these challenges, self-help groups remain a rare bastion of power and identity for many people with aphasia.” p. 165.

“Access to a sense of personal and social confidence, to a more certain identity, is for many people a pre-requisite to asserting one’s voice, to feeling you have a possibility and a starting point to interact with power. So language, identity and power become crucially interwoven. Without language, it is very hard to grasp the core of identity, and without language and identity it is virtually impossible to hold and interact with power. How, then, can those who possess intact language and power develop skills, environments and structural supports which acknowledge this imbalance and model more equal power relations?” p. 165

“Those charged with implementing communication access need to think creatively about ways of engaging people, processes, environments and infrastructuers with new communication practices, practices that attend, non-tokenistically, to the diversity of communication.” p. 166.

Some of the ways the authors suggest for assisting and organizing for those with communication disabilities are:

-training for those without communication disability;
– including ‘interpreting’ skills enabling non-communication disabled people to adapt their spoken and written language to make it accessible, and training in monitoring language for clarity and flexibility;
-supporters who offer one-to-one interface between people with and without language impairment. (p.166)

“At Connect, for example, trained communication supporters facilitate inclusion in meetings by going through papers at pre-meetings, supporting the person with aphasia to follow conversational exchange and ask questions, by taking notes on line and by spending time after the meeting to review ideas, concepts and decisions. Communication access training focusing on written documents is a further aspect of developing communication skills, supporting everyone in an organization to reword complex, abstract documents and information into clear and concrete language. Training also supports people to consider format, layout and use of pictures that most readily support communication access. The situation where everyone in the organization, from therapist to receptionist to researchers to finance director, takes responsibility for monitoring and changing their use and presentation of language is a healthy first step towards inclusive communication.” p. 166.

In the autism community, it’s just as important to look to other community’s that share similar challenges, and to read what they have to say. Often in our community, we tend to get locked into autism labels which confine us to consider that autistic people, with “different” behaviour, cannot be capable of understanding language, although we have enough research and personal accounts to seriously challenge that assumption. As researchers engage in ways to “enable” autistic people to communicate, which is important, we also have to consider the ableist dimensions of technology and language training. We have to consider that power comes from those who can communicate, and to rethink our organizations and the way we do and do not provide access. As suggested, communication seems to assure identity and power. In its absence, does it mean that an communication-impaired person is not a person? How accessible is current technology to autistic people? What are the barriers to access which include financial issues, attituidinal issues in AAC provision? What about the way we enable or disable a different way – perhaps we can coin it an autistic way – of information gathering and language construction (or any other kind of construction such as art, the way information is gathered, learned and expressed)? We tend to assume so much about how people should be and it may behoove us to think that neuro-normative ways could very well have its own limitations. Perhaps its time to cross borders.

Reference:

Pound, Carole, Hewitt, Alan. (2004). Communication Barriers: Building Access and Identity in Disabling Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publications.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.