Independence and Supports

I am not interested, in this particular post, in explaining why assistance technology and supported daily lives do not detract from independence, or why independence is not necessarily a goal, or why I focus on autonomy and self-determination instead.  That’s for another, more philosophical post.  In this post I want to talk about the boys I work with, and their prospects, and how this challenges some stereotypes, reinforces others, and fits in with the social model.  I also want to highlight one very important, very salient fact:

Abilities are never stagnant.

I illustrate this based on the experience of three boys I’ve worked with, all with—at the very least—Kanner’s Autism/Classic Autism/Moderate–Severe Autism.

These three boys will be identified as Griffin, Peter, and Daniel.  A brief summary: Griffin is verbal, intellectually disabled, and probably the closest to Kranner’s original patients.  He has severe issues with adaptivity, some savant abilities, and is very much a teenage boy.  Peter is nonverbal but capable of using several speech-output devices—Dynavox, Tango, etc.  He enjoys communicating, although he has trouble understanding how conversations work and how to compose full sentences, as well as how to ask questions.  He is learning these skills slowly but surely.  He is very smart, doing eight-grade science with his peers, particularly enjoying punnet squares and taxidermy.  He also has some pretty major behavioral issues which interfere with mainstreaming, or really any academic or social challenge.  Daniel is the youngest, and is minimally verbal due to a sort of apraxia of speech.  He also uses a device with great success, and is also learning the art of full sentences, questions, and conversations.  He has a great many secondary issues, such as PTSD, behavioral manifestations, and who knows what else—it is very hard to help him with psychiatric issues when he can’t tell you how he’s thinking.  Despite this, he is very smart, hyperlexic, and, like Peter, very social and affectionate.

When I first encountered these boys a year ago, I was much less optimistic about their futures.  They struck me as rigid, compromised individuals who screamed all the time and were beyond much assistance.  But, like many surface impressions of any autistic individual, these impressions and predictions proved to be completely baseless.

I have watched these boys mature, grow, develop, and learn, slowly but surely, for over a year.  Some may consider their advances minuscule and insignificant; I see them as extraordinary and, if not transformative, important.  Both Peter and Daniel have become comfortable and functional on their devices to the point where we can finally start tutoring in conversation, asking questions, composing sentences—essentially, in generating original content.  Both Peter and Daniel have begun to regulate their behaviors. Griffin has begun to initiate conversation.  These seem like small things in and of themselves, perhaps, but they represent quantum cognitive leaps and lay the foundation for a whole new array of vital skills.  They indicate that abilities are not stagnant, progress is possible, the solution is not to despair but to educate, support, encourage.

And so I have reconsidered what their futures might look like.

For all three, I am not naive.  Various forms of support and assistant technology will continue to be essential, and will probably play an even bigger role than they do currently.  But here I think of Amelia, a young woman—also autistic and intellectually disabled—I know, who requires a wide variety of visual supports in her day-to-day life.  Her house—like mine currently does—will someday abound with charts delineating various steps in basic routines such as washing dishes and getting snacks.  But as long as she has this chart to remind her of the proper sequence of steps and break everything down, she can function autonomously.

I see a similar future for the boys.  There are various devices they can access which store lists upon lists of such routines, and for Peter and Daniel in particular, accessing these devices should be even more effortless and functional than using their AACs.  Griffin, for his part, loves technology and already uses something similar.  These devices, in a way, take on the role of a paraprofessional’s coaching or long lists of routines plastered everywhere, but they require an element of choice and do-it-yourself that is not seen in these other options.  They don’t just encourage, but require autonomy and self-determination.

And so I see a future for the boys in which family members and staff play a role, but the communication of wants and needs, self determination, and autonomy are preserved, valued, and given precedent.  In other words, I see a life analogous to the life of someone with, for example, CP or MD.  There is support, and the support is perhaps more explicit, physical than the sort a TAB person receives.  But there are worse things.  The point is, not one of these boys will need full-time care, or institutionalization, whereas twenty years ago that would have been the norm.  The point is, abilities do not stagnate.  The point is, education, accessibility, and support go a long way.

These boys are not going to be “supercrips.”  They will not be able to fit into the conformationist model of disability—the one which insists that “anything you can do, I can do better” or “I’m just like you!”  But there is another part of the much-maligned social model which addresses issues of social justice and human rights.  And neither of those factors is out of their reach, out of anybodies reach.  And if you don’t see that, if you don’t see that autonomy and self-determination and social justice are human rights and not mutually exclusive with being disabled, that even the disabled can lead fulfilling, just, self-directed lives, then I really don’t know what to say to you other than open your ears and listen.  Do some basic research.

Julia Bascom’s Independence and Supports appears here with her permission.  She currently blogs at flashback dream sequence.

on 06/21/10 in Autism, featured | No Comments | Read More

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