Sue Rubin's Experience with Inclusion: 'I Was Seen As A Competent Person'
February 21, 2000 (FEAT Online Newsletter)
Good morning. I have been asked to talk about the experience of being autistic and also the difference in being educated in a regular high school as opposed to the special day classes where I had spent my life until the ninth grade. I will begin with the autistic experience. I am a very autistic person so my experience might be different from that of some of your students, especially those who are called high functioning. I am considered a low functioning person.
Perhaps we should begin with those two definitions of people with autism. People assume those of us who can't speak are retarded. I was thought to be retarded until I was introduced to facilitated communication when I was thirteen. I looked, sounded, and tested like a retarded person. I can certainly understand why I was assumed to be retarded. All my very awkward movements and all my nonsense sounds made me appear retarded. Perhaps I was. I admit that I did not think when I was a child. Voices floated over me when people spoke to me. I heard sounds but not words. It wasn't until I had a communication system that I was able to make sense out of the sounds. I assume killer autism was preventing me from connecting with
the world. Was I retarded? That depends on the definition of mental retardation. We say mental retardation can be diagnosed by testing. Autistic people often test as retarded because of a basically dysfunctional movement system. These results are then verified by assumptions about how a person moves and talks when he is retarded. So when a person asserts that autism and mental retardation occur together, mention this supposedly retarded person who is a college student and say that you don't believe it.
Movement is essential to communication. I am unable to speak because of apraxia, a movement disorder. I can type because the movement of one finger going up and down is much easier than speaking or using sign language. Even this simple movement is awfully hard. I began using facilitated communication in 1991 and needed support at my wrist. After five years of fading support I was able to type without the facilitator touching me. I still need an experienced facilitator to sit next to me, but I can type by myself.
Naturally we look retarded when we have an unplanned movement. I often can't control my body and make jerky weird movements. I know some people with autism are agile but research by Martha Leary and David Hill show movement disturbances are very common in autism. I believe the problem is with purposeful movement. Sadly we cannot even move from one place to another when we want to. We compensate by going where a movement takes us
and actually use our weird movements to get where we want to go. For example, when I want to move from one area on the keyboard to another I will jerk and have my hand land where I want it to. Movements appear as mental retardation when we can't get our bodies to follow directions. Movement disorders make it appear that we don't understand what is being asked or we are being non-compliant. My movement disorder actually disappears when I am emotionally on a high. I still can't speak but I can move around with confidence and dance when I am in a club with lots of young people wading through crowds and music so loud the room vibrates. Lots of movement disturbances are tied to emotions. Actually the dancing experience is the only time emotions helped me. Usually they make purposeful movement more difficult if not impossible. For example, I was unable to walk into the auditorium for the First three years of high school. I was afraid of being in such a large crowded room and so my teacher had to really physically push me in on the count of three.
Movement also means movement in thought For example, when the eye doctor asked me to put my chin on a machine, I put my eye on it because I was still thinking eye. My awful echolalia is also an example of movement of thought. I say a word or sound and am unable to switch it offer change to a different sound. Obsessive compulsive behavior is also an example of a movement problem. I sadly get stuck with certain thoughts and actions. For example, when I say a sound I require someone to respond with a specific answering sound. I have taught the people around me how to respond. I don't rock or make repetitive movements like some people with autism, but that is a wasted example of getting stuck in a movement. So when you hear someone saying a person with autism is clearly retarded because he is not following a direction or he is stuck in movement of thought, say you don't believe it.
The next area I would like to address is our weird sensory systems. Loads of sensory information is distorted when it comes into my brain. I am able to receive sensory information normally sometimes so I can recognize when it is abnormal. My sense of hearing is most problematic for me. Sometimes my sense of hearing is very acute. When an audiologist tested my hearing she said my right ear heard sounds at the extremes other test. She asked if I heard sounds other people don't. I think I do. Sometimes I can hear people, talking in another room. The audiologist said I pass sounds from my right to my left ear because the right one is so sensitive. I am also very sensitive to loud sounds. When we are in a crowded noisy place like London airport I make a loud sound to block out the noise. The surrounding sounds get lower. That is assuming I am in a place where I can yell. If I am in the synagogue and it is noisy I can wade through for quite a while.
My sense of smell is quite normal. I don't believe I smell things more or less than other people. Had I smeared feces or smelled people I met, I would have had a sensory problem. Touch is problematic for me. I am both hyper and hypo- sensitive to touch. My sense of touch becomes very awfully hypo-sensitive when I am sick or upset. Last month I couldn't feel my ear hurting even when it perforated and bled. The doctor said this was not normal. I also couldn't feel pain when I pulled out a handful of hair. Getting some feeling in my body becomes essential so I turn to self abuse. Head banging is my method right now but I am trying to extinguish that because my future lies in my ability to express my intellect. It would be ironic if I caused myself to become mentally retarded because of head banging. I also am hypersensitive to pain. Sometimes I feel pain when I shouldn't For example I hate to brush my teeth. I love nice white teeth but I actually am in pain when my teeth are brushed. Touch can also be calming for me. I love to have a friend or my mother gently stroke my arm. I also feel good when my hands are touching plastic. I often walk around carrying a plastic spoon. I know it is dumb looking but I need the spoon to relax me.
My sense of sight is not normal but it is better than Donna Williams' who sees a face in pieces and said on T.V. that she couldn't differentiate a bird from the bush it was sitting on. I do see pages of books in pieces. I glance at the page because I see it quickly. I then put the pieces together in my mind. I understand all the words and can answer questions about the material on the page, but I don't read each word or go down the page line by line. I don't know how I do this. My sense of sight becomes overloaded in places like libraries and supermarkets. I have forced myself to tolerate both because I need to shop and do research for school, but I still don't like those environments. My vision never shuts off, but I do look away to avoid the emotions attached to looking at people. I need to work on looking at people when they are talking to me.
My sense of taste is normal, but I am fussy about the texture of some foods. I like crispy chips but not crispy vegetables or fruit. I really enjoy good French food and I believe my palate is quite sophisticated. My proprioceptive and vestibular senses are quite a mess. I cannot regulate how fast I am walking, so I often hold onto another person. I know I look retarded but I really need help. I also have poor balance so holding on helps. Basically I have no idea where parts of my body are. I think this might also affect my ability to tell when I'm sick. I can't feel where I feel pain when I do. I just know I feel lousy.
Emotions play a part in the sensory system. Each of my senses works well at times, but emotions prevent them from working sometimes. Basically emotions mess up my sensory systems. I am able to function as well as I do only by controlling my emotions. When they get out of control some sensory systems will fail. They sometimes will fail when I am not dealing with emotions, but I can count on them to fail when I am attacked by emotions. I am really talking about people who are gravely autistic like me. I don't know if people with less autism have these problems.
I would next like to talk about behavior because I am plagued by awful behaviors. I know I am difficult to be around. I enjoy my friends' company but they can't be around me for more than a few hours. The echolalia drives people crazy and I even assault them. I definitely am horrified when this happens. It happens when I am stressed out because I am sick, or because of a bad experience in the community. I also am assaultive when I am upset about school work and a lack of staff I need to be successful or if a friend disappoints me by putting her personal life above my needs. Killer autism destroys my ability to keep friends. When I am assaulting people I love I feel awful but I can't stop. I will abuse myself as an alternative. I actually am getting better. I am now very good at understanding how complicated other people's lives are. I used to just see a person as a care provider for me, but now I can see how a very nice person can have personal issues that interfere with her ability to meet my needs. I am also better able to discuss my anger with my roommate or psychologist so I don't assault my friends. My yelling also upsets people. I yell whenever my equilibrium is disturbed, which is often. If I am relaxed and happy I am fine, but the smallest challenge can cause me to yell. I yell when transitioning thoughts and movements. This is awful - for example, I yell when I'm entering or leaving a room, or when my staff changes.
Behavior cannot be separated from emotions. My emotions prevent me from controlling my behavior. I understand what behavior is appropriate and what behavior is inappropriate, but if an emotion attacks me, I am incapable of doing what I know is right. The openly awful loser behavior then upsets me, so an escalation cycle begins and I am lost in it. You might assume I am talking about anger, but in fact, it can be any emotion. Laughter is thought to show happiness but it can sometimes be a curse. Laughter sometimes comes out of my mouth when I don't Find anything funny and I don't want to laugh. Then the laughter really paints me as an idiot.
Being scared is a common feeling for me. I am often afraid of losing control which then makes losing control happen. Fear always accompanies me. I can not control my body and am always afraid of what I may do or say. I often run away instead of sitting down. I mask this by running to the bathroom even though I don't really have to go there. I can usually get where I want to go on the second or third try. I am also afraid of what might come out of my mouth. When I am visiting someone I often say "go home" even if I don't want to leave. Having an opportunity to type a message helps this. Although my reactions to emotions are inappropriate I can identify which ones they are. I am able to understand what emotions other people are experiencing too. In fact, I am so good at knowing how another person feels, that I get sucked up in their, emotions. I am actually experiencing their feelings. I think this is why an awful cycle begins when a staff person gets upset with my behavior. We feed off each other and escalate the emotional level.
People assume because my face doesn't show emotions that I am not experiencing them. This is not true. I am much better at smiling and laughing appropriately now. My mom used to know I was smiling by looking at my eyes, now I can move my mouth and smile or laugh. This laughing is totally different from the out of control laughter. Illness shows in my eyes and my mom and staff can tell when I am sick by looking in them. My concrete face still doesn't show sadness or anger. Lots of times I wish people could see how I feel. I hate when I am left out of conversations because I can't give the body language people need to communicate. Typing is o.k., but it can't take the place of body language.
This brings us to the last area I would like to address - communication. I understand that all people with PDD have communication problems, but the combination of lack of speech and body language is devastating for people like me. It is the reason people see us as retarded. Even if we had the same movement, sensory, and behavior problems but could talk, people would say we were autistic but not retarded. The label of retardation affects our school programs when we are children and our living and working situations when we are adults. I took the SATs with minimal support and got 1370. This, with my 3.98 GPA, enabled me to be accepted to Whittier College. How many other people with autism are assumed to be retarded when they are not? I presently work for WAPADH, an agency that supports people with developmental disabilities, and have found that most of the consumers there are not retarded. They suffer the same awful problems I do. I am pleased to have been able to tell you what it is like to be autistic. I hope when you go back to work with warring professionals, each with his own idea of what it is like to be autistic, you will remember what we spoke of today.
Now I would like to talk about my experiences in school. Whittier has always been progressive so even when I was in special day classes I spent a part of each day with non-disabled peers. However, I was not in those classes with any expectations that I was learning and I had no
responsibility other than keeping my behavior in check. I was actually learning but my mind was so disorganized that the information was all a mess inside. I didn't even know what I knew. In the special day class I spent a lot of time lost in my autistic world. I responded to the behavior modification plans and worked on my I.E.P. goals in an autistic way. Believe me, I was absolutely not thinking or doing anything because it made sense or because I really wanted to. Whatever progress I made was just a measure of my ability to comply. It had nothing to do with me, who I was, or what I thought.
When I entered a regular high school in the ninth grade everything changed. I was expected to learn what was being taught. Now I was a member of a class, not a visitor. I was seen as a competent person and actually tried to act that way. My behavior was still a problem, but I desperately wanted to stay in the classroom and fought with my autism so I could. After a while I had to fight less and less. I slowly became accustomed to being in class and could actually relax. All my wasted awful behaviors masked a maladaptive emotional system. Once I was comfortable with myself and my environment the behaviors decreased significantly.
The goal of getting a regular diploma was mostly what kept me in classes. I lost behaviors as I came closer my goal. By my sophomore year when it became apparent that I could go to college, I was determined to control my behaviors in class so I could get the grades I needed for college. My determination paid of as nasty behaviors melted away. I don't want you to think that the behaviors disappeared entirely. In fact, even in college classes I sometimes have to leave the room, but now I can tell if I am going to explode and I tell my facilitator to take me out before it happens.
I believe I am less autistic than I used to be because of my educational experiences. I am still non-verbal and still lob in behaviors, and still have apraxia to the n th degree, and still am experiencing sensory differences, but now my mind is working. I now know who I am, and understand the world around me as well as is possible in this day and age. Without having been in regular classes, I don't believe this could have happened.