Changes in our communities generally fit into one of two categories. I call these categories top-down changes and bottom-up changes. The top-down changes are those that are initiated by government or other large organizations. The bottom-up changes are the ones initiated by individuals that grow one person at a time. While it seems that the top-down changes are the ones that have the most strength behind them, it’s the bottoms-up changes that make a difference. This is just as true in autism communities as in any others.
The biggest problem with top-down changes is that they are put forward by organizations that have grown so large that they lose their own ability to change. Because the organizations can’t truly change, they have limited ability to influence change. The No Child Left Behind act is a perfect example. Improving education is a worthy goal and doing so by using measurements and assigning accountability is a strategy with a lot of merit. Hand this task to the Federal Government, who puts mandates on State Governments to make sure that local governments meet the Federal Government requirements and you’ve got a recipe for meaningless change. Well intenioned, but pretty much meaningless.
The bottom-up changes are the ones that are generally unobserved as they get started. They’re not very visible because there’s only a few people involved. The changes happen over time, due to the strength of an individual’s commitment, their leadership, and others recognizing that the change is worthwhile.
There’s a organization in my state that excels at driving change from the bottom-up. The group, the Autism Spectrum Resource Center, is not affiliated with any national or regional organization. It had it’s beginnings as a local support group for families with autistic children. A small, but dedicated and energetic, group decided to reach higher and make an impact beyond their local area. They gave themselves a state-wide focus and went to work. They engaged the support of professionals with state-wide, national, and international recognition. They developed workshops covering a wide range of topics. They compiled lists of resources throughout the state and published a 300 page resource guide. They hold an annual resource fair to connect individuals, families, and professionals. They are at the center of an effort to pass legislation so that Connecticut will no longer be one of two or three states that does not provide services to autistic adults who need them.
The Connecticut Chapter of the ASA has become more visibly active in Connecticut over the past year or two. While this may appear to be an example of a top-down change, looking closely shows that this visibility is due to a few people that are very motivated to drive change. The fact that they are affiliated with a national organization has not kept them from making change, one workshop, one support group, one email, and one phone call at a time. It’s just as much bottom-up change as the ASRC.
We need to remember that we can drive these types of changes. We may only influence a small number of people, but the impact will be more significant and longer lasting than the changes put forth by large far-away organizations.