Adam is learning to become an independent typist so quickly now. While it makes me proud and happy for him because he wants to be independent (he has written so many times), it is really important to know that independence, for all of us, is an illusion.
First, Adam has been typing since he has been around 4-5 years old. Most teachers and therapists aren’t all familiar with how support can enable a non-speaking person to type (and possibly become independent). While we began early, we didn’t obtain the commitment from teachers who would not learn how to support him, in my view, because they didn’t understand the meaning of support.
When a person has many motor planning issues associated with their movement and speech, it can be very difficult to feel grounded enough to type. The purpose of support is to enable the body and the mind to ground (if you will allow me a metaphor). A support person also offers the emotional security in a task that is so challenging when the body and mind coordinate many different stimuli and tasks. We take for granted how we multitask, and how our bodies coordinate speech and bodily movements effortlessly. For Adam, he has expressed numerous times how he has required help.
The important addition in Adam’s life has been the support we had been looking for all these years; this means daily use of typing in all settings, almost all of the time. Adam now has access and support every day. As such, he has moved so swiftly in his ability and language expression that we are all confident that he is moving to more consistent independence.
However, I want to caution everyone here, for the emotional support of others may be needed, as well as patient and gracious listeners. Just because Adam can often type without physical support does not mean that he might now need another person nearby giving him the confidence he needs. Also, while the level of support may fade, some people may always require some level of support throughout their lifetime. In my own research, I’ve found that a generous and encouraging co-presence – of love and a presumption that Adam is intelligent and curious, has encouraged him. He has been very frustrated for how he has been treated over the years as a boy who hasn’t understood what is being said, and is eager to learn even though his day-to-day life may be challenging.
While the iPad has markedly changed the reception of Adam by others – providing Adam’s voice and enabling friendships and school work through text-to-speech technology (we use Proloquo2go) – technology is not a panacea. Too often, we make the grave mistake of thinking that if we push our children hard enough, they will learn how to speak or type, etc. “Just as long as he can communicate” thinking will not erase the experience of being autistic. Our modern notions of independence are skewed by a market-economy that demands that we, as parents, produce the most efficient workers. This is also proving to be a big issue as our autistic children turn 21.
The ABA movement, when it was nascent here in Canada in the 1990’s-present, presented itself as an early-intervention treatment to recover the autistic child. The idea that earlier (and quicker) is better, fuels parental desperation and fosters an inauspicious environment for learning. These therapies also promised parents that remediation was a passage to full inclusion in our society; that the only way to participate and contribute was to be cured of autism. Many a rights-based/legal argument constellates around the notion that to be remediated is a right; to be cured is a right in order to assure this passage to normality. All of these notions are based on a modern concept of an abstract citizen as it was formed by way of the Social Contract. In this, none of us are citizens precisely because none of us can pull our own way; we are all dependent upon one another for every cycle of the market, and for the function of our daily lives. Every rich man or woman has an army of support that enables him/her to earn that living – or production; as such one can deduce that all participants of production should be “owners.” It’s about who has the power over that capital, of course, that is called into question and is part of the discourse regarding social support.
What would it mean to think of autistic contribution and the desire to be autistic? Adding to this, can we think outside the box of productivity as we currently conceive it in modern economic terms? We have seen autistic contribution proved many times, in speaking and non-speaking ways, and perhaps it is this aspect, as having to prove oneself as normal (as possible), that troubles me. I want to call into question about how we all markate and market autistic contribution.
My interests are on how society expects autistic people to speak in “normal” ways as a passage to citizenship. As displayed in the film, Wretches & Jabberers, for instance, even when autistic people achieve communication, they are not considered full citizens; they are not included into schools or considered for employment. Here too we must acknowledge that in our society, there will be some bodies who have more material needs than others (Erevelles, 2011). How does the notion of achieving one’s “fair” or “equal” share leave out many people with significant disabilities? And what are we doing (positively and negatively) in terms of elimination of those bodies in the name of “equal” distribution?
Our questioning about autism and technology should be not just how it can make autistic people independent, but how we can change our views towards autistic people; and the right to support and education past the age of 21. Education is another system that supports economic output, of course, and needs to be reconsidered. Certainly we also know that for all of us, time-plus-experience enables knowledge. We need to provide education past that hurried (and hallowed) age of 21 and to grapple with the very troubling issues that confront us within our current system. All of these considerations may help us rethink our systems of support.
Just because we have new enabling technology doesn’t necessarily mean we accept autism. There are many contributions we all make to one another that are not counted as capital; that exist (and are valuable) outside the ledger. The ledger, after all, is a mere frame. We know there is always something left outside of it, and in this case, I am referring to a class of marginalized autistic individuals who are not considered equal because of economic potential. We need to think first about accepting autism while we consider how to educate and support autistic people with technology.
Nirmala Erevelles, 2011. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. Palgrave MacMillan.