TASH National Conference Dec. 4, 1998

Castigating Assumptions About Low Functioning Autism and Mental Retardation

           

            Good afternoon. My name is Sue Rubin and I have prepared my talk ahead of time because I don’t really talk and my typing is very slow.  After my written presentation I would like you to ask me questions.

 

            Until the age of thirteen, I was a typical low functioning person with autism.  I was so typical, everyone assumed I was also retarded.  I was tested by the psychologist and was graded at the level of a two year old.  I didn’t speak, except for echolalia.  I had a very short attention span, was aggressive and self abusive. 

 

In October of 1991 I was introduced to facilitated communication, and my mind began to wake up.   Progress was slow at first, but after a few months I could type single words with someone pushing my arm back while I typed with one finger.  In a few more months, I was typing paragraphs and going to a regular science class.   When it was time for high school, my parents, school personnel, and I chose Whittier High where I could be fully included.  I graduated after five years with honors and a regular diploma.

 

                        When I began to type fluently my family realized the importance of it and assumed I would go to college.  I too knew I could do it.  We planned my high school courses accordingly.  Old stereotypes were replaced by total rethinking of autism.  Fortunately, the school personnel absolutely agreed.  We all became partners in this new adventure. 

Adjusting to high school was not easy for me or the special ed staff who had to explain bizarre behavior to the regular ed teachers.  With a few exceptions, the regular ed teachers were great and allowed me to work up to my potential, taking several honors and advanced placement classes.

 

When it came time to look at colleges, I decided I had to be at a small school where everyone would get used to me quickly.  Whittier College was the perfect choice.   I was accepted under the same rules as everyone else, and was awarded a John Greenleaf Whittier Scholarship of $38,000 based only on my GPA of 3.98 and SAT scores of 1370.   I attend classes with a facilitator and do all the same work as the other students. 

I still need physical support when I type long assignments, but for short answers, I type by myself with a familiar facilitator near me.  It took me several years of learning to communicate with facilitation to reach the point where I could communicate without any physical support.             

Although I am a part-time student, the college treats me as if I were full time.  Being part time allows me to keep up with the heavy demands of college work, given the slowness of my method of communication.  It also makes staffing easier because not all of my support staff can work with me at school.

Was the psychologist in 1991 testing mental retardation or something else?  Clearly I am not mentally retarded, nor are any of the one hundred students or 90 adults who use facilitated communication in the Whittier area.  They are not all headed for college, but have shown greater intelligence than they were thought to have.  What quite honestly accounts for my success is a mother who was capable of learning how to use facilitated communication.  I was not an easy subject and anyone else would have given up a million times.   Only her perseverance forced me to type and keep focused. 

People with disabilities other than autism also use FC, but I can only talk about my own experience.  I would like to spend the rest of our time together talking about what I see as a confusion between autism and mental retardation.  Let me start with the tests that determined I was retarded.  I admit that I was not able to process directions well or think clearly, but is that mental retardation?  If it is, how could it change so drastically in one year.  When I was retested with facilitated communication after I had been typing several months, I tested at an I.Q. of 130.  In addition, even after my mind became organized and I could think, the tests were measuring my ability to coordinate my awful body with my mind.            

 

            Before I began to type, I did not think.  I know that is not true for many people who now use FC, but I know in my case, I did not think.  Only after I had been typing for a while did I begin to think.  What was amazing was that no one had taught me how to read or spell, but I was able to do both.  I also knew  simple arithmetic.  I believe I picked up this information from the environment and stored it away.  It was only after I started typing that the information was accessible.  In the first year of typing I was still not completely organized.  For instance, whenever I saw a tall person with brown hair who was about the size of my uncle, I thought it was him.

 

            Also, before typing I did not understand what people said to me.  Words only floated around me.  I began to make sense of them after a while.  I now understand everything but still I’m slow to respond.  I know what someone wants me to do, but it takes my body a while to move.  I also have trouble switching what I’m thinking about.  For example, when I went to the eye doctor and he asked me to put my chin on a machine, I was thinking about my eye, and tried to put it on the chin rest.  I heard him say chin, but my body was still thinking eye.   This is confused with not understanding or with non-compliance.

 

            Another behavior that makes people think I am retarded is constant echolalia.  My mouth is moving completely independently from my mind.   I can control echolalia when I am in class because I am cognitively engaged.  When I type, my echolalia disappears somewhat.  Some people might use echolalia appropriately as a means of communication, but I never did.  Since I started typing my spoken language has increased, although it is absolutely not enough  for a conversation.  I wonder what good spoken language would have been without thoughts?

 

            I have a deficit in my thinking and I don’t know if it is common in autism or is just unique to me.  When I remember events, I can’t tell if they really happened or I imagined them.  I can actually picture events in my mind and I am sure they are real until someone points out that they couldn’t have happened.  Awash in  embarrassment, I realize that I imagined the event.  I even worry about imagined events that I think really happened.  Waking nightmares may be a good description.  Lasting problems can result from this.  The problem with my memory does not affect my schoolwork.  I learn what is in my books, what the professor says, and what everyone says in class.   I admit I still have problems with assignments.  I need someone to write them down for me because I cannot recall them.  Assume my forgetting assignments is much worse than normal people’s forgetting.   

 

            My verbal and physical tics also make me appear retarded.  I sometimes suddenly make a noise and everyone stares or I suddenly hit myself in the head.  I don’t plan these things.  They just happen. 

 

            My failure to modulate or express emotions appropriately also makes me appear retarded.  When someone comes to see me and I am happy, I sometimes run through the house or else I go to my room.  I am happy, but the emotions overwhelm me.  I also yell, which is totally inappropriate.  I admit that I punish people with my behavior if I am mad at them.  I know this is immature and I am beginning to be able to tell people through typing when I am mad.  I know I must give up this way of controlling people, but it sure works well.

 

            Very often aggression and self abusive behavior are associated with low functioning autism.  I certainly am a perpetrator of both, but they have nothing to do with mental retardation.  Often they are triggered by specific events, but sometimes they just happen.  Maybe it is some kind of chemical imbalance.  So if you are looking for an antecedent and plan on giving a consequence, that might be unfair.   A negative consequence will change the behavior, but it will just be replaced by a different awful behavior.  I actually asked for lost privileges to help control my behavior, but always understood that they were only band-aids and would be good for a short time.  However, during a crisis, they would help.  Now I am better about recognizing when I am going to lose it.  My ability to address anger and frustrations helps tremendously, and my staff are very aware of behavior that is leading up to a crisis, so they can use distractors and calming activities to avoid an explosion.

 

            Appearances also contribute to the assumption of retardation.  Many people with autism look quite normal, but some of us look goofy.  We are also not well coordinated so we move inelegantly.   We are trying to get our bodies where we want them to go, but our bodies have minds of their own.  

 

            I knowingly contribute to my looking retarded by carrying around a plastic spoon or bag of buttons.  I even take a spoon to my college classes.  I need a familiar and really comforting object to keep me calm.  I’ve tried more appropriate things, but for now spoons are necessary. Only an autistic person would understand the reason for me carrying them around.

 

            I think we low functioning people share some things with high functioning autistic people, like obsessive compulsive behavior and abnormal reactions  to information coming in through the senses.  My obsessions change with time, but I am always obsessed with something.  It drives me crazy but I can’t stop.  Quite a few autistic people are taking medication to help with this, but it doesn’t seem to work for me.

 

             My sense of hearing is acute, but not as bad as it used to be.  I can now tolerate background noise and only loud noises bother me.  My sense of touch always drives me crazy.  I hate any kind of grooming activity and am a slave to a gentle tickle on my arm.  I can’t stand shoving things in my mouth, or having someone messing with my head, but a light tickle on my arm is very relaxing for me.  My sense of smell seems about normal but some smells really bother me, like the smell in an old house or the smell of dirty feet in an old hotel.    Watching water is really relaxing for me, but not as compulsive as it used it be.  I am now able to walk past water fountains.  Supermarkets, bookstores, and libraries are very upsetting because of all the colors and stuff.  I have to use the library at school and can force myself to do it.

 

            Another stereotype of people with autism is that we lack a theory of mind,  the ability to imagine how another person is thinking, what his perspective is, what he is feeling – empathy.   This is totally wrong.  The ability to see something from another perspective is something I have been developing since I started typing.  I used to think in terms of black and white, but now I see all shades of gray.  I actually enjoy looking at problems from various perspectives.  As for understanding another person’s emotions, I frequently overly react to the feelings of others and often get sucked up in their emotions to such a degree that I can’t function.  Imagination is also supposed to be lacking in people with autism, but this is untrue too.  I spend far too much time imagining fantasies about things I would like to happen.  Imagination and the ability to understand and use figurative speech, another supposed deficit, can be seen in the beautiful poetry many people are writing using facilitated communication.  And then there is the ability to read body language.  I know my face remains stone-like, and it seems that I am not reacting to body language, but rest assured I am aware of every little movement and posture and understand exactly what they are saying.

 

            I understand what I just told you is very different from what you have been taught about low functioning autism.  I am aware of all of the controversy around facilitated communication.  I also understand how difficult it is to admit a mistake, but I am pleading with you today to rethink assumptions about autism and mental retardation and join with me and other disability rights advocates in supporting opportunities for and the right to communicate, so we may escape the prison of our minds and bodies.

 

            I would now like to entertain questions.  Please feel free to ask me whatever you like.