News & Events: Interim President’s Annual Report
Posted July 19, 2010
ASW Annual meeting in Vancouver, WA
April 16, 2010
The mission
The mission of our society has actually been changed. After our annual fall retreat our current board has done some re-tuning. Our mission simply put is: Improving the lives of all affected with Autism Spectrum Disorders in Washington. This also brings our state society in alignment with our national Autism Society, whose mission statement is, “To improve the lives of all affected by Autism.” Our role has been to influence state agencies, such as the Department of Social and Health Services, the Department of Health, as well as the Office of Superintendent of Public Instruction (OSPI). However, our population is aging and ASW is now taking a serious look at the needs of our adult population, since not all agencies listed deal with adults.
Our vision
“The vision of the Autism Society of Washington is to promote lifelong access for individuals with Autism Spectrum disorders to appropriate treatments and interventions. ASW also promotes opportunities for individuals to be fully included, participating members of their communities through support to families, advocacy, public awareness, educations and dissemination of current research related to autism.”
Who we are:
We are an established 501 c 3 nonprofit organization with a Board of Directors currently numbering thirteen. Each member of our society is a 100% vested donor to both our state and national organizations, from many disciplines and various regions of our evergreen state. It is actually in our bylaws to have a minimum of four regions represented, which assists in maintaining diversity.
The majority of our active board are parents of someone on the spectrum; some are dedicated professionals in their field, usually related to Autism, and we are proud to state that we currently have board members who themselves are on the spectrum – which is the best way, I believe, to stay true to our mission and vision. As Dora Rainmaker, self-advocate from the Portland area says, “Nothing about us without us.” (I met Dora at a Seattle Autism summit hosted by the federal government, and by the way, she was the only person at this large four state regional summit on the spectrum.)
What we do:
ASW currently sponsors a yearly conference called the “Best in the Northwest”. This has been ongoing for many years, with past keynote speakers including Temple Grandin, the late Bernard Rimland, Liane Wiley, and Robert & Lynn Koegal.
We annually sponsor an Autism Rally at the rotunda in our capital city Olympia, with close to 200 in attendance this year. Thanks to efforts of our director, we have had a variety of speakers, from David Maier (who likes to refer to himself as a social autistic), Molly Feather, herself the spectrum, and Valerie Brenner, our ASW Vice president who spoke of her son Alex with Aspergers syndrome. Others included: Diana Stadden, who has served on ASW Professional Advisory board and Board of Directors and is also a parent of a young man with Autism; Dawn Sidell, a parent of a child with Autism and past ASW board member; myself, a parent with a child with Pervasive Developmental Disorder (PDD); and others. Twelve speakers in all with varied points of view, but we all made notes to our legislators personally at the end of our talks to advocate for those on the spectrum.
This year ASW was proud to announce our new baby - our new ASW web site was born early last fall and we could not be more proud. Our web team brings their technical expertise and also their vast knowledge of the spectrum to our site. Web team consists of; Agnes Rynkiewicz, Sharon Zima, Manya Vaupel and webmaster Byron Spencer. The website is our portal to most everything, including news and information on the spectrum, artwork by those who live with ASD, quick tips, & ASW forum. Our web team likes to tease me, but they really are trying to encourage some of us to catch on with the times, saying “don’t be afraid of technology” – so our intent with the website was to make it great for Washington State and when we look at our analytics, we even get visitors from Eastern Europe. Our web team went though the painstaking efforts to link with top educators in the field and always keep you just a click away from our national organization, the #1 Autism Society website in the world.
Additionally, our own Washington State society was recently chosen as a recipient of the Department of Health grant for a website with a master calendar of events for the state. This is significant because our Washington State authorities have selected “The Autism Society of Washington” as a trusted resource, and part of our grant is to showcase a master calendar of events for our state. Our director Patty Gee broke the state into DDD regions, which was a brilliant plan. Some state agencies took a while to catch on as to why ASW did this, but we can explain — it has to do with services!!! You might say there is a whole new generation of families and those affected who do not.
Another fine development this year is our list of Key Partners. Currently there are many Autism organizations, even more in other states, so our goal has been to steward some kinmanship between organizations and have cross referral. ASW carefully considered these organizations, keeping in mind their harmony with our mission and vision statement.
Revision of our PAB or Professional Advisory Board document was completed and ASW has increased the terms to three years. This will prevent gaps in coverage while new board members come aboard, since active board members serve two terms. ASW currently has three new PAB board members in the approval process, whom we feel will show more varied expertise and also a wider representation of advisors all over the state – not just on the 1-5 corridor.
Our chapters, now beginning to be lovingly referred to as our “affiliates”, are really at the heart of ASW and who we are. They are the faces and families of parent support in 13 areas. Family support and meetings in person has always been the cornerstone to this Autism Society. This year our director has helped three new affiliates come aboard with ASW:
1) Port Angeles
2) King County
3) Wenatchee
All affiliates counted, we now total 13.
Current examples of what affiliates can do: Yakima has an annual autism awareness night with the Yakima Bears in the summer, with close to 2,400 in attendance; Tri-Cities holds a holiday celebration party for families and their kids, with 100 in attendance this year, and they have movies for families and their children teens enjoyment; Spokane is in their second year of hosting adults with Asperger Syndrome social group, which had been followed a long time in cyber space, and after consistently offering meetings, often with double-digit attendance.
I was most struck when I recently attended a King County meeting. After discovering our website, an elderly couple drove from Snohomish to attend the King County meeting. They recently learned their daughter (now in her 40’s) has Asperger Syndrome. There was no name for this when she was young, and she was not even allowed to participate in education, since she was considered a special needs student. A librarian took it upon herself to let this young child just hang out. You see, this young girl could read and read well, and her family knew she showed no evidence of low IQ. Only now is this family putting together the pieces of their daughter’s syndrome, and are assessing how they as an aging couple can assist their daughter.
Where we are going:
You hopefully have filled out our needs assessment survey. This was formulated and designed with our current board input and time. It had 22 questions asking what does ASW does best, and what could we improve on. This assessment survey is being used by the board to analyze and apply strategic planning. Like a business, ASW needs this information in order to co-exist in the competitive world of non-profits. You see, ASW is only here to serve our members, so we should not set our own agenda. We exist to represent our members’ needs and bring forth the voices of families and those living with Autism Spectrum disorders. We must uphold the options policy of our national organization and not exploit those we care for and love on the spectrum. Almost all conferences held by ASW, by the way, do have a person on the spectrum speak, as we encourage folks on the spectrum to speak for themselves. Autism is becoming big business and a mainstream topic, but I hope not at the risk of actually causing more insult for those living with ASD. Our society is sensitive to this.
This 2010 year we must say goodbye to our director Patty Gee, our fearless leader, who has simply kept us going, handling all of our business phone calls, paperwork, membership dues, lists, and dealing with national ongoing, etc… Above all, Patty has been the board’s friend. As she has taught me sometimes, ASW is not wrong, we’re just ahead. This is where ASW I believe will continue to go ahead. I will miss Patty’s gracious smile, and many of us here today have been involved with Autism in some shape or form for a long time: She has been involved with this for half a century!! Patty will remain on the board as past president and have a position as a voting member of the executive board, and ASW will be looking for a new director and searching for assistance with our office duties. Where are we going, well frankly, we’re going to need funding. Money is necessary to keep our organization as a “go-to resource” for us all, to keep the phones operational, and to fund the indirect services ASW provides. Indirectly and directly, we enhance lives and families affected by Autism spectrum disorders. Sometimes this foundation work and chapter/affiliate enhancement is not seen by the outsiders or business communities as a worthwhile investment, but I can tell you, although going to a local affiliate meeting may not make for a sweet news story, it’s meaningful, it’s personal, and it’s real. ASW seriously discusses Aspergers syndrome, for example. What will happen to Aspergers syndrome with the new DSM 5 criteria – will it get lost? Will this syndrome be forgotten?
Indirectly, we affect people’s lives - directly. Some established affiliates have groups within groups at their local county, such as an adult Aspergers group and HFA meeting, a teen group, 6-yr. olds, under mentoring, plus environmental awareness…. These models of groups within a group could be brought to all 13 affiliates, if our members so desire. However, volunteer hours and stable funding is required. Please help us move into this brave and competitive world as an advocate to be seen and heard, and improve the lives of all affected by Autism spectrum disorders. Let us help you, and we ask in turn for you to help us in this collaborative effort. Your time and volunteerism is also very welcome. This grassroots organization needs to continue its growth, and we are your vehicle. The current statistics of 1:110 demand our voice and action to become louder. Your membership and donation money stays in this Washington – something that is often overlooked when people donate for Autism. We are Autism – we are the Spectrum – let’s keep it that way.
Thank you,
Kristy Wessel, Interim President
ASW Autism Society of Washington
www.autismsocietyofwa.org
ASW Board of Directors