The Autism Society Event and Education Recordings Archive

Although each person with autism is an individual, some of us share the experience of abysmal behavior. As a person who has a history of aggressive and self-abusive behavior I would like to let people know how I was able to learn how to control my behavior so I could attend regular classes and eventually become a successful college student. I did this by using Facilitated Communication to engage an intellect buried beneath my autism. Although each person with autism is an individual, we share some traits that result in a common diagnosis. One of those traits that many of us experience is abysmal behavior. As a person who has a history of aggressive and self-abusive behavior I would like to let people know how I was able to actually learn how to control my behavior so I could attend regular classes and eventually become a successful college student. I did not accomplish this by repeated trials, but by engaging an intellect buried beneath my autism. This experience is not unique to me. I see the changes in children and adults with autism sometimes even on the same day they are introduced to a method of communication that works for them. This communication system that has been so successful with low functioning people like me is called facilitated communication. Today I will talk about how it affected my behavior.

When I was in elementary and middle school I was notorious in Whittier for being such a difficult student. I really don't remember anything before I started using facilitated communication, but I have my old IEP's and psychological evaluations to haunt me. In 1982 when I was four, the psychologist described me as moderately retarded and recommended “If Susan's behavioral excesses of biting and tantruming increase in frequency, a behavioral assessment is encouraged”. In 1988 when I was ten and my cognitive development was at the 2 year 11 month level, the psychologist noted problem behaviors; scratching arms, forehead, yelling/screaming up to 10 times a day, pinching, and scratching others up to 6 times per week, biting adults, tantruming, leaving the house, stripping, and dangerous car behavior – unbuckling seat belt, climbing over the seat, grabbing the driver, touching the controls. At an evaluation two years later, when I was twelve and scored a mental age of 2 years 6 months on the Leiter and 1 year 4 months on the Developmental Test of Visual Motor Integration, my behaviors were the same except for the addition of operant vomiting.

I was introduced to Facilitated Communication in October 1991, when I was thirteen. On the psychological evaluation done in late February, four months later, the psychologist wrote,” Extreme frustration may lead to yelling, grabbing others, head banging, or other self directed behaviors but these outbursts are infrequent and easily controlled. The most effective strategies for dealing with behaviors at this point involve determining how much control Susie has over the behavior, providing feedback to her as to how she looks or sounds, and asking her, when she is able to respond, ‘What's wrong?'… A communicative approach to problem behaviors is the most effective strategy”. On the Peabody Picture vocabulary test I scored 133 with an age equivalent of 26 years 4 months.

Actually when I began to type my behaviors were still pretty bad. When I started Whittier high school I was only included for three classes because I was such a mess. Whenever I got scared I very sadly banged my head and attacked my special ed teachers who were supporting me in regular classes. I had to be removed from class numerous times. As I got more comfortable with high school I was able to add more classes. And as I got better at controlling myself I was able to type about what was causing the behavior. Sometimes it was something specific that could be fixed and sometimes it was just being overwhelmed emotionally. Typing allowed me to become an advocate for myself. I really needed competent facilitators and aides who understood how important it was for me to get to class on time and have good notes so I could study for tests.

Typing also allowed me to meet regularly with the educational psychologist so I could tell her what was bothering me. The psychologist was aware of my awful behavior in the past and was anxious to help me. Actually she now lives across the street from me and still is there as a friend to help me.

While I was in high school typing allowed me to write my own social stories and participate in my own behavior plans. Even after I graduated and started college and moved into my own home, I still had behaviors and needed to tell my support staff how they could help me. In 1998 I wrote a list of “things that help me remain in control: I need staff to keep me busy all the time. (structure) I need staff to be bitchy. (firm, concise, set limits) I need staff to keep my obsessions under control. (freebies and limit setting) I need staff to monitor my food so I stay on my diet and don't get fat. I need a safe place to bang my head so I don't hurt myself or break the walls (stimulus control) I need staff to know how to physically control me if I am losing my ability to control myself (emergency procedures) I need things to lose if I lose control. (response cost) I need things to earn but be careful that I don't behave badly just to punish myself and prove to myself that I am unworthy of living with non autistic people (sabotaging a reinforcement program). () Parenthesis by the psychologist.

As I spent more and more time engaged in academics and typing almost whole days I found myself better able to control my behavior. I really believe that my brain has been rewired and the autistic part that was responsible for all that awful behavior is now subservient to the awesome intellectual part that enables me to stop a behavior when I feel it coming. I am also not such an emotional mess. I am able to cope with changes and new situations much better.

Typing allows me to be a college student. Without typing I couldn't have graduated from high school with honors or taken the SAT test. When I am in class now, I am relaxed and quite comfortable participating in class discussions and relating to other students. My professors all enjoy having me in class and want me to take their other classes.

Typing also enables me to have real friends, which also helps my behavior. I am happy when I am out with friends and behaviors just don't happen. This has been a long process and I couldn't have done it without extraordinary people in my life – my teachers, school psychologist, speech therapist, and my parents who loved me even when I was impossible to love. I know my story is unusual and is shared only by a handful of people in this country, but that is not because I am unusual. It is because other people with severe behavior problems have not been given a method of communication and the support needed to make the most of it.

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