Dr. Bill (wmbolman@gmail.com)
BLOG (weblog) #1
WHY DID I START THIS BLOG? One of the things that bothers me the most about the autism spectrum community (Autism, PDD, Asperger's and various neurodevelopmental conditions with autistic symptom) in Hawaii is that we have a very low sense of togetherness - it’s the result of the way that autism affects us – there are infants, toddlers, preschoolers, school-age, junior-middle-senior high youth, young adults. There are different symptoms (social unawareness, sensory differences, stimming, obsessions, anxiety, tantrums, odd interests, sleep problems), different professionals and different ideas about what causes autism spectrum disorders (ASD) and how they should be treated. So it’s no surprise if we often feel isolated, stressed and powerless.
WE NEED TO CHANGE THIS. Otherwise we have no political or community awareness as we deal with state services (DOE, DOH, DSSH) and community organizations. We pride ourselves on Ohana, “It takes many hands to pull in the nets”, but we are so caught up in our own problems and those of the few families we know who have similar issues, that we don’t have time and forget about the larger, outside the family ‘system issues’ that need group cohesion and social pressure to change. Examples are we have no office, no staff, no money, etc. except for the heroic work of the Autism Society of Hawaii, Naomi Grossman, Evelyn Akamine, and others.
SO, since we do not have an office or staff or other mechanism to get us together, I’m hoping we can make this “Autismspectrumhawaii.blogspot.com” into a virtual office. There are a lot of smart people among us who have ideas about what needs doing and (perhaps) how to do it. There are so many things to do that it looks a bit overwhelming, but we’ve got no choice. As a single example of why we need to do this, if we take the current CDC estimate of ASD = 1 in 150 and multiply this by the number of children & youth 0-18 in the last census, we get an ASD figure of 1,500. That means there are a huge number of people out there who may need information/support/etc.
I do not know at this time what will the best way to organize this blog, so we will have to adapt as we go along. I’m going to ask various professionals and parents I know to add their own comments, people like Jessie Mitchell, Sheila Kaimuloa and Dr. Peg Murphy-Hazzard. It will be important to identify professionals who like and are skilled at working with ASD issues. For example, I’ve heard that the number of Board Certified Behavior Analysts has increased greatly from less than a dozen to over 2 dozen! There are a number of service providers, groups like Alakai na Keiki, CARE, TIFFE and the day program providers for youth as they leave high school and go into a community that is not well prepared for them.
I don’t think we will be able to do much that involves money at this time, given the international and local recession, but we could certainly get our act(s) together for when the recession lifts and we know what is needed.
But above all it would be good to hear from everybody so we get a growing information base to build on. Therefore, please start sending in your ideas, comments, critiques, gripes, whatever and we’ll all work together at creating an Autism Spectrum community. Dr. Bill
