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INDIVIDUALLY-BASED AUTISM INFORMATION: Community-Based Program Design

"WHY is community-based program design part of individually-based information and practice?"
How any one individual has a developmental-loss condition and how we may find ourselves in a certain situation in our homes, schools, workplaces and communities will connect our individual experience to our biosocial conditions, identity, status and powers.These connections between the individual as person and the community as a collective system cannot be divided. Unfortunately these two realities are often pitted against each other, as if we can choose to be just an individual, or only a member of our collective groups. Every society, every community is constituted of both of these spheres of being. The inner and outer realities of each person and the inner and outer realities of each community exist and are equally important and relevant. Western/first world society is outwardly more individualist. Yet, at the heart of this system are great collective problems and potentials. Eastern/second and third world societies have been outwardly more collectivist. Yet, at the heart of that system are great indiviudal problems and potentials, as well. Threshold does not engage in these realities through political debate. People with Autism are mostly excluded from such politcal processes. At worst, we are included in ways that do not always work out in our best interests. We are more interested here in a biosocial view of these issues and the reality that the Autism community has people within it. We need individualized interventions that are negotiated and developed from a collective pool of best Autism practices, rather than from practices that are designed for people without Autism. This is what we mean by community-based program design, and why it is central to individualized planning.

Each individual with and without Autism needs to have a program that honors our individual and community realities. We also need those programs to be built from well-established models of best practice that have been proven to help people with or without Autism within and across our own developmental spectrums. This means that we cannot construct authentically inclusives spaces by treating anyone as if everyone is the same as us. For example, we need to respond to our universal (not special) needs for clear air and water, healthy food, safe shelter, affordable health care, accessible public services, comfortable sensory environments, adequate community mobility, positive home-school-recreational-vocational settings, stable job placements with fair pay for work done, response-able support for our lost and gained capacities over our life times, mutually understandable communication systems, humane social relations, and inclusion in open and negotiable spaces that are well-matched to our individual conditions and collective situtations. Systems with the power to determine and provide services may need to work and adjust to meet these universal needs through more fully adaptive strategies to become authentically inclusive. If we do not then we are creating only an "Illusion of Inclusion" that is designed to keep typical people more comfortable and better served while relieving our conscience about being overtly exclusive. This is not a just path.

There is no need to fear the inclusion of best Autism practices within the larger service world. They always serve to improve everyone's lifes by offering complementary person-centered (for adults who are able to self-determine choices best practices for ourselves) or person-focused assessment (for children and adults that may need guardian-determined choices), life span family-centered planning, and community-based programs. All these can co-exist within authentically inclusive spaces that include all other communities. This approach is all about transparency of power-systems, encouraging manage-able change, and making equitable progress. We can easily embed these values into all the best practices we currently have at hand. We just have to advocate for systems reorientation to our shared developmentall needs, and to have our needs met in relation to our diverse biosocial realities. This is what we mean by community-based Autism program design.

This approach allows for the construction of best Autism practice programs within and outside of best practice programs for people without Autism, as we may each and all need them to be built and maintained. Having time and space together and apart with people who are the same as ourselves and different from ourselves is just a human need and tendancy that is best served in an open and appreciate fashion that allows for effective, ethical, equitable, and emapthic consideration of each person and group. The most exciting thing is that this approach is both economically more affordable, and most authentically inclusive. It allows us to the realize the best of individualist and collective realities and values in ways that honor each person and every cultural and functional group.

The text above includes excerpt from ABLETIQUETTE A Guide to the Able Diverse Universe For the Well-Intended Provider, by Sharone Lee. This is a college level text for diversity engagement work (2001). 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.