 
by Bethany Broadwell
She was the featured subject in an Academy Award-nominated documentary and she has addressed hundreds of people in live presentations to convey how it is she manages to lead her life with autism. For someone who finds communication particularly challenging, Sue Rubin absolutely has a story to share.
Diagnosed when she was 4 years old, Rubin explained she has “low-functioning” autism which affects every aspect of her life. She said until she was 13, people believed her to be severely mentally retarded.
Her mother, Rita, described how Sue, as a child, primarily used behaviors, such as yelling, biting or head banging, to express herself. Her verbal language was limited: “She used her spoken language when she wanted something – like ‘hungry’ or ‘juice’ or ‘cheese.’ She didn’t answer questions.”
When Sue became a teenager, her school psychologist and speech therapist introduced her to facilitated communication, a process by which another person through touch or encouragement supports typing. This approach is believed to help because it gives people with autism the direction they need to stay focused and make their wishes known.
 According to Sue, her life completely changed as a result of this communication method.
School staff and her family all started learning about FC at the same time. The Facilitated Communication Institute at Syracuse University and Anne Donnellan at the University of Wisconsin-Madison helped them learn about the method.
“We were so amazed at the little bits and pieces we got from Sue in the first few weeks, then her progress through phrases, sentences, paragraphs, whole essays, and the ability to answer all sorts of questions, that we were always excited by her progress and looking forward to what she could do next,” Rita explained. “There were challenges like how to do algebra using FC, but these were problem solving challenges, not emotional ones.”
At that time, Sue’s attention span was only a matter of seconds.
The Rubins credited their support network in Whittier, California, for empowering Sue to be as engaged as possible in appropriate activities. She was included in regular academic classes and graduated with a regular diploma. She was even able to take the S.A.T.
“We have also always included her in family activities even when it was very difficult.” Rita added, “We’ve all learned not to let challenges defeat us. We deal with problems, and move on.”
Members of her family have advocated for Sue and for others with autism by serving on the boards of several disability organizations. Sue, meanwhile, has learned to be a self-advocate. She feels an obligation to advocate for people with disabilities who haven’t had the opportunities she has had.
Today, at age 30, Sue is attending Whittier College in Whittier, Calif., and majoring in history, with an emphasis on Latin American history. The only pieces of assistive technology she uses are a Lightwriter and a Franklin Organizer to communicate. A facilitator goes to school with her to take notes and to support her with the completion of her assignments.
Sue carries one or two classes at a time because her typing continues to be slow and it is still challenging for her to sit through two-hour lectures. She expects that she can graduate in about five years. Then, she said she hopes to become a freelance journalist, writing for a newspaper.
“At the moment, I am very anxious to finish college,” Sue said. “I feel like the oldest person on campus and can no longer relate to 18- and 19-year-old freshmen.”
For fun, she has plenty of interests: “I like to go to parties with friends and love eating out. I love clothes and shopping. I also love traveling with friends and family.”
Her mom described, “Sue has an amazingly supportive group of friends. I hope these people remain her friends throughout her lifetime and that she makes new friends who will become old friends. I believe this is even more important than any success she might have in her career.”
Sue is mobile without assistance, but she has poor balance and poor motor planning that leads to her falling often and needing to hold onto someone when she walks. She has 24-hour support, because she requires help answering the phone, placing calls in an emergency and completing daily living tasks.
Rita’s ultimate hope for her daughter is simple: “My hope is that she never becomes complacent, but continues to advocate for those who don’t have a voice.”
Sue echoed that suggestion for others: “My advice for other young women with disabilities is to become as independent as possible. Follow your dreams and always, always speak your mind.”
Sue Rubin’s homepage
Autism Society of America
CNN presents Autism is a World
Autism Speaks
The Facilitated Communication Institute of Syracuse University
TASH (Sue Rubin serves on the organization’s executive board.) |
