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Sue Rubin

Pittsburgh Employment Conference August, 2003

Communication, Education, and Employment

 

Good Afternoon.  My name is Sue Rubin and I am a person with autism who

 

uses AAC and also is a college student.  Having a typing person with autism might be a

 

 new experience for you, and I welcome any questions you might have when I finish

 

these words I have prepared in advance.

 

Background to my voice- Facilitated Communication-

 

Before the age of thirteen I was thought to be mentally retarded.  Then I was introduced to Facilitated Communication, which has become my only way of expressing my thoughts.  It is in every sense of the word my voice. Without it, I would not be able to be a functional thinking individual. Without facilitated communication, I would not be able to assert my wants and needs as small as they may be.   Before FC I was only capable of showing my wants and needs by aggressive, unintelligible behavior: I would scream, kick, bite and scratch to let someone know I did not want or like something, but it was up to the individual to figure out what was actually bothering me.  With FC being introduced to me I was able, for the first time, to explain what was actually on my mind, without having to hope that someday people would understand that the reason I was exhibiting ghastly behaviors was not to frighten, but to convey a message. 

Preparing for work as an undergraduate university student-

            The transition from high school to college was definitely a life changing experience.  It was the biggest monumental change to adulthood I have encountered thus far.  Being placed in higher academic course work through high school via Honors and Advanced placement classes helped prepare me for the content and work load a freshman in college would have to face.  There were trials and tribulations that I faced being in an inclusion setting with peers of my own academic capabilities. At first I was not able to sit in the classroom for more than five minutes without exhibiting horrible behaviors.  I was soon able to become more familiar and comfortable with my setting and my awful behavior subsided.  That does not mean that on a bad day or without notice to anyone it would not rear its ugly head.

The eye opening experience of high school-

 This was the first time in my life I was truly challenged and held accountable for the hopes and dreams I wanted to pursue.  I had to prove that though autistic I have been blessed with an amazing mind, one that has the potential to move one day on to graduate school, but the road ahead was not easy.  In high school I was faced with the complexities of sitting in an autistic body, which does not listen to my above average mind.  Fortunately, understanding school staff supported me so I could remain in class.  Homework took three to four hours daily and all day Saturday or Sunday.   This was painstaking and at times terrible, though I persevered with the aid of my mother at my side.  I graduated with a regular diploma with honors and a 3.9 GPA and got 1370 on my SATs.

            The easiest part of the college experience as some may know is getting in.  At first it feels as if the testing and records will eat you alive, but there is no better sense of accomplishment and fright than finally receiving the white envelope that holds the key to your future.  I knew that within that envelope lay many a transition to the future.

Transitioning to college-

            The first thought any college student is faced with is where they will reside while attending school.  Though dorm life is the freedom that every freshman desires I knew early on that it would be unrealistic for my situation.  Since I had much maturing to conquer I knew that having a roommate was out of the question, as well as living in the obnoxious surroundings of other freshmen.  How would I explain my idiosyncratic behaviors such as banging my head against a wall when frustrated, or screaming at the top of my lungs when my body language seems to be relatively normal?   I couldn’t.  Living in the dorms was entirely out of the question.  My parents and I decided instead that I would live off campus in my own home with a roommate.  To shorten a complicated story the roommate didn’t last long, but I have been living in my own home away from my parents ever since beginning college.

Support staff-

            Living on my own has been a great deal of work.  I had to find support staff for not only my academic life, but also my social one as well.  These individuals have become the first true friends I have ever made.  Although they are paid staff, they often spend time with me when they are not being paid.   Being my support staff the individuals first had to believe that I was capable of doing college work and they had to believe that they could support me in an academic environment.

My accommodations-

Due to autism I cannot use a verbal voice.  I was introduced to a technique called Facilitated Communication that enables me to type on a keyboard.  It can take a great deal of time to produce even a paragraph.  I must have the physical reinforcement of my staff by me at all times during class.  Their physical body must be close to mine to alleviate tension that I am feeling.  I now sit through lectures up to two hours; where as when I began school I had a difficult time sitting in a chair for five minutes.  When I first began typing I needed physical support on my hand and gradually faded back to the top of my shoulder.  This took approximately two years to accomplish.  I am now able to type completely independently, without touch, with staff that I have a close connection to. My support staff that accompany me to school must take notes for me as a form of accommodation, as well as situate me in a “sensory friendly “ environment.  Autism is attacked by sensory overload, and my body reacts to the smallest of sensory distractions, such as a car going by an open window.   The sound and the visual stimulation can set me into a frenzy.  My keyboard must be light and portable so I am able to type as quickly as possible in any environment.  I also have difficulty typing independently on a large keyboard.  I use several different devices from a computer keyboard for long papers to small portable keypads I can carry in a purse. 

Reliability-

            I can assure skeptics that I am held accountable for my own academic work, and must do all of the work on my own.  The staff I have has been well trained mainly through their own college experiences to know what work and standards I must adhere to. 

Where I am now-

            My academic road has not been an always-easy one, but it has been a journey well traveled.  I am now a junior, majoring in History celebrating summer break.  My goals are simple; I want to graduate from college.  It may take some time, but it will be well worth the hard work.  I have recently been taking only one class a semester due to the workload upper division classes require.  I am also a national board member of TASH and serve on several committees, which require a lot of work

A liberal education and employment –

            Bringing a background in history to the workplace is not as bizarre as it might seem.  The wonderful information about definitely different people who experienced a life different from ours, gives insight into human nature and an understanding about how individuals can affect history.  I bring this to my work with people with autism.  Right now I have two consulting jobs.  I teach people with autism and other disabilities that they too can learn to communicate like I do using AAC.  I also make suggestions to the speech therapist and other trainers about the best way to teach people since I understand what is preventing them from learning.  My second job is as a research assistant for a professor who is doing a study on the impact of Facilitated Communication on people’s lives.

As a student who can communicate well, I also visit legislators’ offices to advocate for people with disabilities.  Making changes and correcting attitudes of legislators is extremely important.  I am happy to report that in California, both the budget trailer bill, which called for parental co-pay for services from the state; and a standardized purchase of services proposal, which would have been detrimental to people with developmental disabilities, have been deferred this year.

 

At this time, my future plan is to complete my Bachelor’s degree, increase the paying jobs I get as a consultant on communication, add some consulting jobs on behavior of people with autism, and pursue a graduate degree in history.  The thought of not attending classes and continuing to learn awakens in me a feeling of loss.

Thank you.