Guest Blog: Autism Awareness and Technology at the UN
Darlene Hanson is a speech pathologist and a dedicated member of Special Children’s League of Whittier, an auxiliary group of UCPLA. Darlene recently had the unique opportunity to visit the United Nations on the occasion of World Autism Awareness Day to share her expertise and demonstrate the many ways technology can foster full inclusion.
I am Darlene Hanson and am just finishing my 2-year term as co-vice president of Ways and Means for the Special Children’s League of Whittier. SCL-W has been a part of my life for over 30 years. Nine years ago, I became a member!
I am a speech pathologist who started my career in the public schools working with kids with the most significant needs. I knew I wanted to work in special education when I was 13 years old. I had a childhood friend who lived with Down Syndrome. She didn’t have a lot of speech but I don’t think I ever really noticed. Then at 13, I took my first series of sign language classes – I was going to teach the hearing impaired.
In high school the vocational counselor set me up to volunteer at the Speech and Language Development Center in Buena Park. When it was time to look for colleges, my mentors directed me to Chapman University and to the profession of Speech and Language because I knew I wanted to do what they were doing.
Ten years ago, I started working for a local nonprofit, REACH, as the Director of Communication Services. I was on their board prior to my employment. Both our public schools and REACH are benefactors of the funds we raise in the SCL-W.
When my youngest child graduated high school, Thadine Haner, a mother of one of her long-time classmates and also a friend, asked me if I would like to join the SCL, especially now that I had some “free time”. I already knew first hand of the important and great work the SCL was doing in our community – so, I signed up. I have been active in this group since then.
Individuals with special needs who often have the most significant needs have special “resource needs” as well; and public schools and nonprofits, unfortunately, are terribly underfunded. In my work, I spend much of my time thinking about technology and communication, and the access to everyday things. The gift of technology and materials to our programs has had an amazing impact on the lives of those who have very specialized needs. This support is also uplifting to the staff, in that they know we are here to help. The SCL of Whittier has always provided that extra something for the children and adults in our community.
April 2nd was World Autism Awareness Day at the United Nations. In the United States, we recognize that day and the entire month of April as Autism Awareness Month. This year the topic at the UN was Assistive Technology. I was asked by the committee to join a panel and discuss the importance and needs of individuals who use assistive technology, in regards to the need for access and training. This experience was a great honor.
Our way of understanding how autism affects a person’s life is changing. We have long believed that autism is a “behavioral disorder”; new research and work is expanding our understanding to include ‘neurological differences’. These differences are often in the area of movement. When a person’s ability to move their body, thoughts and emotions is impacted, it can affect how they access the use of technology. For people with autism, technology has been a great resource, providing opportunities to engage with others in a way that is easier for them. However, because of the complex neurological differences and the effect on communication, many children and adults still need training and support to engage with others when using the technology.
I do hope that my participation in this panel was able to spark an interest in others to learn more about how the “whole person” is impacted by autism, and to remember that participation in one’s life and communication are basic human rights. If we are not supporting individuals to learn to communicate and participate in their lives, then we are deciding who gets to be a part of this community.
I see so many children and adults who do not have speech and do not have an alternate way to communicate. Their lives and the lives of their families are greatly impacted by this challenge. When a person has the ability to learn to communicate, we must support that course of action and listen to what they have to say.
I would like to leave you with an example of the power-of-communication. This week I met with a young woman, 22 years old. She had been working with a professional for 7 years in the late 90’s and in 2008 that service stopped. At that time, she was able to type to communicate her thoughts, and use line drawings for preprogrammed communication.
When this service ended, her life became that of only using preprogrammed systems, which she does well. However, she’s only been able to talk about what her staff have thought she would want to say, and her system is simple, if compared to my own life.
This week we met. She was able to use her preprogrammed system, and the keyboard. Using the keyboard allowed her to say what she wanted. As she was leaving, she grabbed my arm and her iPad – she wanted to say more. She typed, “please help me to communicate better I don’t ever want to be silent again.” This is why I do what I do, and this is why our work with the Special Children’s League is so important. Please continue your good work, and continue to learn more about those we support.