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GLB/SB/W Autism Society of America

Fall 2002

Behavior Ė Some Practical Strategies

Sue Rubin



I would like to thank the autism society for including Johnny and me in this conference. Experts are well adapted for observing behavior and arriving at conclusions based on their own experiences and based on neurotypical bodies.We people with autism are able to explain behavior based on our experiences as people with autism and based on non neurotypical bodies.I am especially thankful to the autism society for inviting me, a non-verbal person with autism. I am aware of the controversy about non-verbal people with autism also being mentally retarded.Quite the contrary.As a group we are actually quite intelligent once we are able to communicate.It may appear we are retarded because of awful behavior combined with the communication problem.I believe that quite a bit of our inability to learn what we should be learning is due to behaviors getting in the way of our ability to focus.The young children I see at the WAPADH Facilitated Communication monthly workshops are frightened by their inability to control themselves.They want to type and are successful for short amounts of time.They will become more relaxed and able to concentrate better as they spend more time at the keyboard.This was certainly my experience.


When I was a young child I too was unable to control my behaviors.I was always reading and was storing information in my mind, but it was all wasted because I couldnít access it or quite honestly, I wasnít aware really that information was in my head.


I remember awful behavior like biting people, wanting to hurt people, hurting myself by scratching until I bled, hitting my head against a wall or car window, kicking the dentist and hair dresser, nasty yelling when quite able to control it, and really quite ghastly awful echolalia when I could have stopped.


Basically quite often the behaviors were in response to sensory issues.For example, the abuse I gave the wonderful and wacky English woman who was amazingly able to cut my hair when I was a child, and the abuse I gave Dr. Sanchez, my dentist.Each time I went to see him, I bit and kicked him.This went on for almost twenty years, believe it or not.I am happy to report that I am a wonderful and non-violent patient now and I also can sit through a hair cut and curling iron session.I am able to tolerate these things now because I can intellectually overcome the autistic desire to attack anyone who hurts me.Killer autism actually causes such touching to be painful.Nasty dental work always hurts even non-autistic people, but I believe it hurts us more.Hair cutting actually hurts even though hair is dead.I feel pain in the hair that should have no feeling.I tolerate the pain because it is not too bad, but is more annoying than painful.


The problem I used to have with biting and hurting people was due to autism taking over during a rage and not being able to stop the rage.Rages were caused by awful omnipresent bad neurological events happening in my brain.Sometimes they could be set off by specific events like when person was being mean to me.Other times they were caused when quite willfully I wanted to get my way.Sometimes they funneled way out of control like a tornado.A small cause was the center of the tornado, and all the destruction whirled around that center.Sometimes awash in autism, I didnít even know what the cause was.The only thing that would stop the rage was someone holding me around my waist from the back. Even when the really awful rage stopped, it was a while until I was calm.When I felt rages coming everyone who was working with me knew how to deescalate my behavior before it was too late.They talked quietly and stroked my arm lightly.Rita was able to prevent rages by anticipating what was fueling the behavior and making changes before the explosion occurred.


Behavior modification plans were also very helpful.I needed wonderful rewards and loss of privileges to keep behaviors under control.This might sound silly to you, but I really needed an outside intervention to cancel the autistic impulse to do something awful.


The most difficult behavior I was able to overcome was head banging.I was a wonderful head-banger for several years.I banged my head and face against any hard surface I could find.One day, nasty comments about a friend were made while we were driving.I was very upset and banged my head on the car window.The sensation was very satisfying.I didnít feel pain and was very much relieved emotionally by the contact of my head on the window.Head banging became my method of stress relief.I was getting a lot of attention, which I always liked.The head banging actually got out of control and I was not able to control when I wanted to do it.Episodes could be decreased by behavior modification plans such as taking away my spoons I like to carry.Really, the cure for head banging didnít revolve around traditional behavior plans, but rather finally occurred when I came to realize that the damage I could be doing to myself could be horrible and permanent.I had understood for years that the damage would be horrible and permanent, but I actually couldnít stop myself.The ability to control the behavior was something that took years of fighting the autistic compulsion to hurt myself. I believe I was successful because of my typing each time an episode occurred.I was able to switch from the autistic blind rage to the intellectual part of my mind. Eventually the intellectual part was able to subdue the autistic part.The helmet was always sadly worse for me.I realize that the helmet was intended to protect my head, but it acted like a cue to hit my head.†††††


The only behavior issues I have now are all related to obsessive- compulsive behaviors.I love spoons, buttons, and putting silverware in glasses filled with water.I am really trying to control my compulsive behaviors and try to picture myself as a relaxed adult who doesnít have to do these things.



Sadly Rita wants me to pay for the coffee pot and glasses of hers that I broke with spoons.Really, this will not stop me.The loss of money is meaningless to me.The loss of a spoon would have much more of an impact on my behavior.Money is part of my intellectual world, but spoons are part of my autistic world.


Behavior is a very difficult subject to write about because we autistic people have so many problems due to our autism.We have sensory issues that result in behaviors, wacky behaviors due to ideas about wanting to feel important, getting in trouble just to have people pay attention to us, and of course, all of the obsessive-compulsive behaviors.We also have purely neurological wiring problems that look like behaviors.An example of this is when we canít move our bodies when we want to.We either look too retarded to understand a request or we look like we are exhibiting oppositional behavior. Of course we also exhibit behaviors when we are sick.Right now I have an ear infection and would like to head bang to relieve the pain.The head banging actually removes ear pain and doesnít hurt me.Really nasty autistic behaviors, like the time I messed up my beautiful hair by pulling out a huge handful, did not hurt at all.I am resisting really wonderful head banging because I was able to tell Rita we have to see a doctor NOW.We non-verbal people with autism absolutely must have a method of communication so we can tell you what the function and reason for the behavior is.


I hope this has been helpful to you. Although autistic people share many things, we are individuals and my experience may not be the same as anotherís.We can only enable autistic people to recognize that they can advocate for themselves and participate in the process of learning how to control their behaviors.


If you have questions for me, I will be happy to answer them now.


Sue Rubin