April is Autism Awareness month. In recent years, the percent of infants diagnosed with autism spectrum syndrome continues to increase nationwide, primarily among baby boys. The advocates for those with the disability point out that in the last decade the medical community has learned a great deal about how best to treat and teach those with autism.
In order to better understand the changing landscape in this field, the Oregon Developmental Disability Coalition has organized a series of “Advocacy Days,” held at the state capital, to share their concerns and problems with elected officials. These public forums focus on one aspect of the autism paradigm during each of the seven days. These continue through June.
Coastal residents impacted by autism have seen their support services drift away over the past few years. One of the local families affected by this diminution of services is the Kawahara family.
Casey Kawahara, who has autism, and his mother Kelly traveled to Salem on March 20 to speak with elected officials from across the state about their concerns at one of these advocacy forums.
The Kawaharas are members of a support group that is based in Eugene that organized the trip to Salem.
“We belong to a group called, ‘Surfing Through the Waves of the Uniquely Gifted,’ which is funded and supported by a group called ARC Families Connected, and they gave us a flyer that had a list of dates and subjects that were going to be discussed up at the state capital,” Kelly said. “One of the topics was about services and the availability of services here on the coast for people with special needs. We used to have services and, somehow, nobody knows how it happened, the money got shifted around and we were the area that lost those services.”
Casey, who is 20 years old, graduated from Siuslaw high School in 2014. He is an engaging young man that is quick to smile and once comfortable, will share his opinions and feelings with others. Casey is interested in trains and videos and is looking forward to his 21st birthday, when he can do something that he has always looked forward to.
“We are definitely going to the Beachcomber,” Kelly said. “He has always wanted to go in there and he finally gets to do it. I think Casey will have a beer, something he has always wanted to try.”
The Kawaharas had the opportunity to participate in a number of discussions with legislators in Salem and were able to speak directly to representatives about the current situation on the coast.
“We met with Sen. Arnie Roblan and Sen. James Manning in a small hearing room. Casey read a speech that he and I had worked on together about the situation. It was very interesting because in that small group, the senators were more relaxed and they were able to share some of their personal family history.”
One of the most touching interactions of the trip occurred during a discussion with Manning, when the senator shared the fact that he has a 50-year-old brother who has autism.
This openness helped to ease any tension the Kawaharas felt about giving their speech. It also connected the two with the legislators.
Casey and Kelly both felt the meeting and the speech, which was entitled, “Even If Your Voice Shakes, Let Your Voice Be Heard,” went well. They were also pleased to be able to share some of their problems accessing counseling and job training in Florence that are available in larger cities.
“There are excellent opportunities in Eugene and along the I-5 corridor, but I’m afraid to pay for that,” Kelly said. “They took opportunities from areas like the coast.
“We used to have job coaches and job developers in Florence. These are two different positions that we used to have for supporting Casey and other young people. They helped them to get jobs and to contribute and learn, but now they are only available in Eugene.”
Individuals with autism can exhibit a wide array of symptoms. This has led to a rethinking of the way these symptoms can be understood and treated.
“I think that it helps to have that broader definition, because a child can be developing differently at different times and with symptoms that may change over time,” Kelly said.
When asked what she most wanted to share with the community about her experiences raising Casey, Kelly said,
“If you are the parent of a young child and you have even an inkling, don’t stop. If you think that something is a little bit different with your child, don’t ever stop asking for help,” she said.