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INDIVIDUALLY-BASED AUTISM INFORMATION: System Reoriented Providership
If you are an individual with Autism or a new family or novice service provider some of the information in our website may be confusing or it may make things about Autism clear in a way it has not been before. If you are a new parent of a person just diagnosed with Autism some of the information in this site may be deeply upsetting, or after a while it may actually make you feel very hopeful and empowered. If you are an experienced service provider some of the information here may feel very disorienting, or it may make you feel solidly oriented in your work for the first time. These two diverse response patterns have been consistently found in what our readers have shared with us about their experience of exploring our information system approach for the first, second and even third time around.
At first we thought we could fix our website so our information never confused, upset or disoriented anyone (for is not that what we are taught about good information and best educational practice?) Yet, the more we pursued those three goals, at the same time we pursued the most use-able knowledge about Autism across the four dimensions of information, the more we found ourselves at a strange circular fork in the road. Really good information about the biological, cognitive, biosocial, and affective impacts of Autism was always intially somewhat confusing, upsetting, or disorienting to anyone new to this world. This is because finding onself in a whole new world is confusing and upsetting and disorienting unless we pretend we are still back home. However, that kind of avoiding reality can be very dangerous. We all need to reorient to new realities and worlds if we are to suvive them and thrive in them.This is how we noticed that the very same information always became very clarifying, empowering, and orienting for people who had been living working and coping with Autism without this kind of a map. It seemed that our individual experiences with Autism causes us to become more ready, able and willing to read reality-based information about Autism. However, the temporal improvement of the use-ableness of dimensional information had one other barrier.
We have also witnessed that there is also a significant resistance to information about significant and atypical developmental losses by those of us with typical most ableness and providership power. We like to stay in our world and to operate out of its old normal ways. We see inclusion as a model that brings The Others into our world and helps them be normal like us. Certainly, the achievement of any individuals fullest developmental potential is important to being able to function. In contrast, it is not at all functionally necessary that any one person go about reaching their potentials in a certain typical or provider prescribed way. The only path that we need to find is a best practice path that is person-focused and family-centered. Sadly, much of the services we have access to may be much more systems-oriented no matter how many new laws or practices we add into the mix. This is why system reorientation to person-focused asssessment, family-centered practice, and community based programs is critical.
Therefore, new parents and novice providers need to have the same information about the individual realities of Autism early on, if we were to avoid any risks of getting lost in misinformation. Such misinformation for individuals could lead us into what is less-than-best-to-worst Autism intervention practices. In addition, we found that in our sharing of the real world experiences of us as individuals within our homes, schools, workplaces, and communities can be transformed by well-established information about Autism. If individual service providers also begin to have access to this it can cause a system-wide reorientation to best practices that began with our individual appreciation of more complete and reality-based Autism knowledge. Systems-reoriention is at the head of that progressive path.
Understanding Autism Webbook. Copyright © 2000-03 by Sharone Lee. ALL RIGHTS RESERVED. All names, concepts, methods, materials, products and publications are protected by trademark and copyright, and no part of this text or this web page may be reproduced or distributed in any manner, for any purpose, including educational purposes, without express written consent from: THRESHOLD • SALEM, OREGON • 503-375-9462 • sharone@understandingautism.org. Portions of "Communication Primer" were published in The Net Journal of the Autism Society of Oregon, with the Author's permission in 1999 and 2002.
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