ASO News

Oregon Commission on Autism Spectrum Disorder

In fall 2009, Governor Kulongoski created the Oregon Commission on Autism Spectrum Disorder (OCASD) with the help of Senator Chris Edwards. The mission for the Oregon Commission on Autism Spectrum Disorder is to develop appropriate, collaborative and timely supports and services across the lifespan. This mission is accomplished by the creation and implementation of a long term strategic plan that increases coordination, promotes best available practice, makes efficient use of resources, and both directly engages with, and better responds to the needs of, people on the spectrum and their families.

“My hope for the future is that every individual with ASD and their family has an array of services available to them that meets their needs”, says Marilyn Gense, Chair of the OCASD.

The Commission has created a number of sub committees in order to accomplish their mission. There are nearly 100 individuals working on the commission. The membership consists of parents, self advocates, educators, medical providers, service agencies, and others all working together to design a plan for services and supports to meet the needs of each individual and family. The OCASD values input and ideas from anyone connected to autism as we work to understand the issues and concerns. The subcommittees are as follows:

• Community Services for Adults
• Community Services for Children and Families
• Educational Endorsement and Competency Based Assessment
• Interageny Transition
• Healthcare Services
• Redesign of ASD Education Services
• Screening, Indentification, Assessment

OCASD invites parent input. The meetings are public and you can find the meeting calendar on their website.

The 7th Annual Autism Walk-a-thon was a rousing success!

For everyone who participated, as a walker, volunteer, the t-shirt artist, committee member, we thank you for sharing Autism Awareness Month with us during the largest autism event in Oregon: The Autism Walk-a-thon sponsored by ASO. Over 4,000 people participated and we raised $30,000. The money raised is already going to work for children to attend the Autistic Children’s Activity Program (ACAP) and the Mt. Hood Kiwanis Camp. Additionally, much work is underway for the October 29th Wrightslaw Conference.

Here are some photos of the 2009 Walk.

Better Business Bureau features Autism Society of America, ASO’s parent organization

On April 14th USA Today featured a Better Business Bureau full-page ad that lists charities that have the organization's accredited seal. Only one autism charity was listed and we are proud to announce it was the Autism Society of America, ASO’s parent organization. The Better Business Bureau seal assures donors that the charities meet the 20 rigorous BBB Wise Giving Alliance standards. ASA was founded in 1965 by Dr. Bernard Rimland and is the leading grassroots autism organization in the U.S. ASO has been the Oregon state chapter of ASA since 1981 and we continue to build on our relationship with ASA. ASO’s Executive Director, Genevieve Athens, serves on several ASA chapter leader committees. Visit ASA website.

ASO elects Jonathan Chase and Barbara Avila to its Board of Directors

ASO is very happy to announce the appointment of Jonathan Chase and Barbara Avila as new ASO Board Members. Jonathan is a 25 year old man with Aspergers Syndrome. Jonathan is a talented bass player and recently starred in the film “On the Spectrum”. Jonathan received the diagnosis of Aspergers Syndrome at the age of 14 and his personal experience has turned him into a strong advocate. Jonathan, now 25 years old, advocates strongly for his teenage brother who has Aspergers Syndrome.

Barbara Avila has been working with children with ASD for over 20 years. She has her own private practice as a RDI specialist (Relationship Development Intervention). Barb has been a long time volunteer for ASO, working in many capacities for ASO. She has been present at ASO’s booth at several conferences and seminars, including the MegaConference in Bend in May, 2008. She has been on the Autism Walk-a-thon Committee since ASO launched the event in 2003. She will be the Autism Walk-a-thon co-chair for the April 2009 walk.

Over 2,000 people attended this year's Autism Walk-a-thon and ASO raised $32,000!

Thank you Oregon! Due to your participation and enthusiasm, the 6th annual Autism Walk-a-thon was a tremendous success. Over 2,000 people attended and ASO raised $32,000! ASO has already awarded summer camp scholarships to children with autism to attend the Autistic Children’s Activity Program (ACAP), Oral Hull and the Kindtree Retreat. Additionally, you will be hearing soon about the 3 city seminar series we are doing on Puberty and how Puberty impacts a person living with Autism Spectrum Disorder. And the Grandparents Breakfast support group is in the planning stages so please continue to check back here for details.

Your support at the walk is making all this happen and we thank you for attending!

We appreciate your participation and join us again next year on Sunday, April 19th at Oaks Park!

Autism Walk-a-thon, Portland, draws more than 800 poeple

The 5^th annual Autism Walk-a-thon held at Oaks Park in Sellwood, drew more than 800 people and raised over $19,000 for ASO!  ASO wants to thank everyone who participated in this event to make it so successful!  Already, ASO has approved 7 sponsorships for children on the spectrum to attend the Oral Hull overnight camp in Sandy and to attend 6 weeks of the excellent Autistic Children’s Activity Program (ACAP). Proceeds from the walk will support Portland’s Girl Power Group and help to offset the cost of a fall conference on housing.  Check out these fun photos from the 2007 walk.  See you next year!

Courtesy of Ponytail Photography Mayor Tom Potter with former Governor Barbara Roberts and her son Mike Sanders

Genevieve Athens, Director of ASO, with Miss Oregon, Donilee McGinnis

T-shirt artist, Trevor Peck with his family. Trevor is a 15 year old student at Scappoose High School

2007 t-shirt art by Trevor Peck

ASO posts a $23,000 profit from the 2006 Autism Walk-a-thon!

ASO had a very successful Autism Walk-a-thon this April, with a profit exceeding $23,000. Over 750 showed up for the walk this year on the first beautiful day of 2006. ASO celebrated its 25th anniversary by recognizing the founding members and Mayor Tom Potter gave ASO a proclamation declaring April, 2006 as Autism Awareness Month in Portland.

Some of the things which ASO used the profit for were:

• Paid for the total transportation cost for the summer program sponsored by ACAP (Autistic Children's Activity Program)
• Paid for 2 summer camp scholarships for children to attend the Oral Hull program, run by the Kiwanis Club
• Hosted the fall 2006 conference for families dealing with severe autism challenges

Thank you Portland!

ASO responds to recent incident between Portland Police & a 15 year old boy with autism

By now, many of you have heard about the December incident in which a 15 year old severely autistic boy was tasered by the Portland Police Department. While everyone from both camps regrets that this happened, we are all in agreement that education needs to continue from both the emergency’s responder’s perspective and the parent/caregiver perspective.

Dennis Debbaudt, www.autismriskmanagement.com, came to Portland in January and gave a talk with an officer from the Portland Police Department on how to keep our children with ASD safe. Here are some tips. ASO suggests you copy these tips and hang up on your refrigerator or somewhere noticeable in your house.

Proactive Safety Tips:

1. Fill out the 911 form on the resources section of our website website and submit to your local 911 dispatch service. If you do not have access to a computer, call the ASO office and we will send you the information. Call (503)636-1676.
2. Secure your house with appropriate locks.
3. Check out the MANY tracking devices on-line or in the phone book. Here are some helpful websites: ????
4. Get a medical ID bracelet for your child. Emergency responders are trained to look for things like this. If not a medical ID bracelet than some other type of bracelet or necklace might work.
5. If appropriate, talk to your child about getting lost, stranger danger and who they need to go to if they get lost. Talk to them about 911 and show them how to use to phone to call 911.
6. Take them to the police station and introduce them to police officers and show them a police car. Tell them that these are the people who will help you in the event they wander from home. Do the same for your neighborhood fire station.
7. Teach your children how to swim. Many public swimming pools will give disabled people a discount on swimming lessons.
8. Get to know the police officers patrolling your neighborhood and community. Invite them to your home to meet you and your child.
9. Tell your neighbors about your particular situation. You might need to call on their help sometime.

Safety Tips if your child should wander from home or get lost:

1. Call 911 IMMEDIATELY. Remember that emergency responders have much more outreach than you do. They are there to help you.
2. If you do have information about your child’s disability on file in the 911 system, tell the 911 operator about this. Otherwise, provide information about your child’s disability WHEN YOU FIRST TALK TO THE 911 OPERATOR.
3. If you have supplied your child with a medical ID bracelet or any other type of identification, be sure to let 911 know about this.
4. Alert your neighbors about your missing child. They may have seen him and can give emergency responders valuable information.

ASO TRAIN PORTLAND POLICE ON AUTISM

Sergeant Kris Wagner of the Portland Police Department approached Genevieve Athens after this year's presentation given by Dennis Debbaudt. She was interested in having autism as part of the required in-service training for Portland police officers. Of course, ASO thought this would be very beneficial and, after some months, signed a contract with the police department to be a part of their 35 week in-service program. The first presentation was given in mid September and will continue weekly until May, 2006.

ASO has incorporated into the presentation Dennis Debbaudt's award winning 20 minute video called "Roll Call". The presentation discusses how to recognize autism and how to respond to the autistic individual appropriately for the safety of the police officer and the autistic person. A total of 900 police officers, all the way up to the Portland Chief of Police, will be taking the in-service training on autism.

Evaluations that have been turned in so far rates the class as being very useful information and helpful for officers in the line of duty. In fact, word of the presentation is getting around and ASO has now received a phone call from the Lake Oswego police department to offer a similar, albeit shorter, training session in November. Perhaps the word will spread in other parts of Oregon and we will see other counties require their police officers get trained on autism.

Girl Power Support Group starts in Portland

Photo right: Karen Gaffney, first person with Downs Syndrome to swim across the English Channel, speaks at the Girl Power Group

The Portland Chapter of the Autism Society of Oregon is starting a social club just for girls, ages 10 and older.

The intent of the Girl Power Group is to help girls with anydisability develop their social skills in a fun, friendly environment. This is what we will work on:

• assist with social language development
• help with turn taking
• facilitate more interactive play rather than parallel play
• develop better understanding of body language
• have fun!

Becky Zeien will facilitate the group. Becky is a certified speech language pathologist with a masters degree from Portland State University. Becky currently works in two elementary schools, Pleasant Valley & Butler Creek, in the Centennial School District as a speech-language pathologist for grades Kindergarten through 6th grade.

WHEN: The 3rd Saturday of the month
TIME: 1:00-2:30 p.m.
WHERE: Moreland Presbyterian Church, 1814 SE Bybee St., Portland, 97202
COST: $5 recommended donation to help cover the cost of snacks

To register, please call the Autism Society of Oregon office at (503) 636-1676.

ASO volunteer wins Miss Oregon Title

Donilee McGinnis recently won the Miss Oregon title and will compete in the Miss America Contest in Las Vegas in January 2007! Donilee has a teenage brother with autism and Autism Awareness is her platform for the Miss America Contest.

At the pageant, Donilee also received the prestigious Community Service Award for the most outstanding volunteer. Genevieve Athens wrote a letter of recommendation in support of all the hours Donilee has volunteered for the Portland Chapter of ASO. Donilee has served on the Autism Walk-a-thon committee for three years, helped give the training presentation to the Portland Police Department, served on the Sibling Panel last fall, has worked countless registration tables and display tables for ASO and has come through for many “direct mailing parties.” Her dedication to ASO and the autism community is felt by many and we wish her the best of luck in Las Vegas.

Krispy Kreme, who is a sponsor of the Miss Oregon program, is hosting a fund raising event benefiting ASO on September 21st at the Beaverton Krispy Kreme, 5:00-8:00 p.m. For more information, contact Krispy Kreme employee Deanna Durante at (503)380-6206.

LENDING LIBRARY AT YOUR DISPOSAL

ASO frequently receives books on autism from various publishers who send out promotional copies of newly published books. The few people who frequent the ASO office certainly enjoy looking at them but we thought it would be a better plan to get these books out there in the hands of more people.

So we recently partnered with the Northwest Autism Foundation's (NWAF) lending library program. NWAF already has an extensive library on autism books that they lend out to parents, professionals and many students who are doing research. In September, ASO populated NWAF's library with 10 books from our office. We will continue to do so and coordinate book purchases to ensure the lending library has books that will benefit you and provide topical information. See a list of current books.

So if you're in need of a particular book on autism to read during the long winter days, please contact NWAF in Oregon City at (503) 557-2111.

ASO will continue to make book donations to public libraries throughout the state.

CD-ROM: "I Just Received the Diagnosis, What Do I Do Tomorrow?"

The Autism Society of Oregon is distributing a copy of the video titled "My Child Was Just Diagnosed with Autism. What Do I Do Tomorrow?" Six autism network parents from Oregon sat down for an hour and discussed what advice they would give to parents of newly diagnosed children. Dr. Steve Edelson produced this video.

The video is stored on a CD-ROM and can be played only on a PC computer. No special software is needed to run the software.

This CD-ROM video is available to ASO members and non-members living in Oregon for no charge. For non-members not living in Oregon, the cost is $15 per CD (send check or money order to: Autism Society of Oregon, P.O. Box 396, Marylhurst, OR 97036).

Oregon families can order a copy of the CD by sending an email to info@oregonautism.com and requesting the video.

DVDs from the Severe Autism Challenges Workshop

For a limited period of time, ASO is making available to parents the DVD's of the 3 speakers who presented at the Severe Autism Challenges Conference.Speakers are:

• Dr. John Green, M.D., whose patients are exclusively children on the autism spectrum. Dr. Green is practicing a variety of biomedical interventions to help these children
• Lisa Lieberman who is a Licensed Clinical Social Worker and is herself the parent of a 19 year old adult with autism
• Gail Wylie who is a behavioral consultant from Edmonton, Canada, the author of several books and highly regarded in her field