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Behaviors always happen for a reason. The reasons may or may not be obvious to us. They do not simply "just happen" but may be a function of a situation, a communication partner, the message that is being sent, or even a physiological need. Every human being uses behavior to communicate. consider the facial expressions that let you know if a conversational partner is interested or not, the slammed door that expresses a frustration or anger better than any words could have, or the shove out of the way when someone wants to be left alone. Even though most of us can speak and have the ability to understand and solve problems, we often rely heavily on behaviors to express our feelings. Many of the individuals with autism spectrum disorders we support may have limited or no speech to access when they want to communicate messages such as they don't want to be left alone, or are having a rough time. Instead, they "act out" as a way of telling us.
Individuals with autism spectrum disorders or other disabilities are faced with many challenges. One of the challenges they may face are attitudes and misconceptions regarding their behaviors. Often behaviors are looked at as something to be fixed or eliminated rather than a method for expressing feelings or desires. In order to bridge that gap, the first concept to grasp is that behavior is communication and that communication is behavior. It is impossible for anyone to "not communicate." Every human uses behavior to communicate at one time or another. This concept is central to our understanding of how "unacceptable" or "unwanted" behaviors develop and how they function in the communicative repertoire of some individuals. However, before looking at specific behaviors, there is yet another very important concept to understand. This is the concept of labels and how they are perceived. As Herb Lovett (1996) stated in Learning to Listen, "I do not like the idea of people (with disabilities) being identified in ways that are dismissive and rude. We have also taken people's behavior out of their social and personal contexts by labeling them as well. The ways we label behavior simply extend the ways we have been trained to label people." It is true that we use "labels" to name behaviors but unfortunately labels cause us to miss the message the behavior may be communicating.
Parents, teachers and other support staff may dismiss the message of the behavior by saying, "Oh, they're just doing that for attention." In many instances, the term "attention seeking" has become a way of "devaluing the needs of people and not taking them seriously" (Lovett, 1996). There are many questions to ask regarding "attention seeking" such as: Why might someone be seeking attention? Is seeking attention always a bad idea? Most often it is true that when behavior is identified as attention seeking, the next step is a way of ignoring it. Perhaps it would be a better option to consider why attention is desired. Is the only time the individual receives any "meaningful" conversation and attention after they have done something which resembles "misbehavior?" Could the individual be hurt, frightened, or frustrated and wanting to tell someone? Could the individual be lonely and simply want to be noticed?
Young children in school love to receive attention and be noticed. Adults also like to receive attention. It may even be the case that adults may have a conversation on the phone with someone, simply for the sake of communicating with another person. When you have called someone "just to talk," has anyone ever told you "you need to call another time when you have something meaningful to say?" Perhaps "attention-seeking" behaviors are not always wrong.
If behavior is to avoid or excape a person, situation or activity, our response should be "why do they want to avoid this activity." Instead of calling someone "non compliant" we should begin thinking of the possible reasons for the behavior rather than reacting automatically. We seldom consider whether the individual is bored, frustrated, frightened, does not understand, or finds the situation or activity meaningless. Would any of us want to show up for work if it was meaningless and we were paid poorly? Or would we want to attend classes in school where the subject didn't interest us or was boring? could avoidance behavior be the result of other issues such as not thoroughly understanding the situation, not introducing a new person, or not creating an environment that supports the individual's learning style?
It may be important to consider the following questions: What can be changed about or within the activity? What is really necessary for the individual to learn? How are the activities and situations meaningful to the individual's future life? There is much to consider when an individual avoids or escapes. Along with the avoidance behaviors, Lovett discusses aggression. " One of the most common 'difficult behaviors' is aggression.
Most people do not like to be hit, or to live or work where violence is a common occurrence. But labeling a person, or even a behavior, as aggressive in a clinical context has a radically different dynamic from respecting the reasons a person might be legitimately angry in a social context: being bossed about, being sexually frustrated, being insulted, or rejected or any of the dozens of other real and individual reasons anyone might have for being angry. It seems strange and perverse to persist in seeing these reasons strictly in our own terms rather than also in the ways the person who is angry sees them (Lovett 1996)."
Behaviors, sometimes called "self-stimulation behaviors," may also be sensory in nature. Individuals may engage in these behaviors when they are bored, frustrated, stressed, or need to "chill out." Most of us resort to sensory-type behaviors when we are bored, stressed, or frustrated, however, our behaviors are not as obvious. We wiggle in our seats, tape our feet, chew on erasers, hum tunes, bite our nails, or fiddle with jewelry to maintain attention or to calm ourselves when feeling anxious. We may want to be alone if we are stressed or need to have some "space." Often when the individual with disabilities uses "self-stim," we decide that we should extinguish the behavior because it is inappropriate, or makes the individual stand out as very different. Perhaps we feel uncomfortable with the behavior and how it might reflect on us as teachers, parents or other supports. Lovett (1996) said, "By labeling people's behavior we often feel that we have the right to act on how the behavior affects us rather than on what the person doing it might be trying to communicate." If that is the case, maybe we should look more closely at those situations when individuals engage in sensory (self-stim) behaviors and instead of simply telling them to "stop" ask ourselves, "Why?" or "How can I help?" or "Does the person need help?"
Remember the language we use is powerful and can set a tone in which people's behaviors and motives are dismissed and demeaned. The important concept is to remember that all behavior is communication. So when an individual "misbehaves," rather than merely reacting and putting the behavior into a disability framework as something to be corrected, we should ask "Why?" "What is being said?" "What do they want?" and "How can I help them get what they want?"
We can begin to reframe our thinking by
forming support teams around individuals who may be challenging. Rather
than focusing on incident reports at meetings, share stories and look for
strengths, preferences, interests, motivators, fears and frustrations.
Rather than discussing the data and behavior incident reports that
everyone already knows, begin to focus on the person's history and
personality in order to get a different perspective for why some behaviors
may be occurring. Share positive information as freely as "negative"
information is shared. Include the indivdual whenever possible to get
their feedback. Build on the strengths instead of creating a curriculum
where each individual goes to school and "majors in their deficits."
Create supportive communities for everyone by listening to the behaviors,
avoiding labels, and asking, "Why?" or "What can I do to help?"
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Have you ever been around high-functioning autistic individuals and thought to yourself, "This isn't bad....what is the big deal...if only my son/daughter could talk like him/her....he doesn't have autism....I forget he has autism....etc. Well...welcome to what is high-functioning autism -- when the individual blends in well-enough not to be completely noticeable as a person with an affliction so that people misunderstand. Because of this the individual with autism doesn't get the compassion, support and understanding for themselves when it their autism is obvious -- like when they are under stress or a major change has occurred. My examples of this approach the number of stars in the sky. I am telling you here that you must never, ever forget that an individual is autistic -- even when he is high-functioning. Because when you do...you forget to make allowances for other things that crop up. People misunderstand, they get hurt and in the end they hurt the individual with autism the most. You see -- people without high-functioning autism are usually well-protected so they don't have to experience "the real world" except in very well-controlled situations. But, people with high-functioning autism are out and about in society without all the protection and adaptations needed.
So....they are given all kinds of labels and comments that are incorrect and unnecessary -- he/she isn't trying...he/she just needs to calm down...I think he/she is just lazy, mentally ill, eccentric, making this up....etc. These individuals need a lot of understanding and the parents don't need to hear all the time that he/she seems normal to you. These parents have been through a lot with him/her and to verbalize that he/she is normal undermines the tremendous job the parents and the individual with autism have done to adapt in this world that doesn't make sense. I have three with high-functioning autism and I can attest to the fact that each one of them have tremendous struggles and live daily with being considered normal one minute, lazy another, making things up, and throwing an unnecessary fit the next. It makes me and my loved ones with autism feel very, very alone when other people don't understand. And, sometimes we need to be understood and compassion given for our situations when maybe it looks easy to the outside world. Teachers, professionals and other parents misunderstand. We walk a fine line between appearing normal to nearly everyone to be openly shocking to people.
So...the next
time you catch yourself thinking that we have it easy because....remember
that we are struggling with autism and more misunderstandings that you can
even imagine.
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Keynote speaker Jerry Newport inspired the audience with his heartwarming presentation and his message of hope. Jerry's presentation mixed personal accounts of what it is like to live with Asperger's and words of hope. He described the theme of autism as "neurological confusion" and "a feeling of being overwhelmed." He compared it to being tossed in the ocean, never knowing when or from where the next wave will come. Before he was diagnosed, he always wondered what the rest of the world saw that he didn't because he had difficulty getting in and out of conversations.
Jerry stated that the hardest thing for him is to have self-esteem. He described an overall feeling of lack of pride in who he is. He warned parents that lots of correcting and many negative messages add up over years, leading to low self-esteem. He noted that part of the problem for people with autism spectrum disorder may be that they look "normal" and are often expected to be "normal." This leads to a tendency to try to remake the person. Jerry's insight on this is "you're only one person, and if you try to be anyone else but that person it's not going to work. You don't have to have autism to understand that." Jerry noted a list of things that he found to be helpful. This included physical activity or exercise. Jerry prefers individual sports and repetitive activities such as running, walking, and rowing, to group sports. Also, Jerry indicated that he needs to receive instructions one at a time. He said it becomes overwhelming when too many things are asked of him at once. He feels expected to handle this effortlessly but can't. He said that he is a visual thinker and does better if instruction is written down. If he receives verbal instruction, he often needs to hear it more than once to understand.
Change is also difficult for Jerry. He said that structure helps and that it is reassuring to have a schedule. Jerry said that it is very tough when he has too much free time on his hands. Once, he made ten round trips to the shopping mall to purchase ten items, one at a time, because he needed to fill an otherwise unplanned afternoon. He also noted that people with autism spectrum disorder can also become too dependent upon structure (from page 15) and experience great difficulty when this structure changes. He suggested counseling and monitoring because one cannot always make his/her own schedule.
Jerry indicated that he feels connected to animals. He said that he especially identifies with birds because they are "always in a state of readiness to fly at any moment." He said, "no matter how composed or calm I appear, I am always on the verge of feeling it's too much." Jerry said that sensory issues are important. He's found that fragrances, sounds, lights, and even the color of walls can be very distressing. He described being hugged as "like being electrocuted," especially if it comes as a surprise.
Throughout his speech, Jerry injected hope. His message is that we "need to see potential in people with autism" and "lose the fatalistic view." He said "it saddens me that after a certain age there is resignation…no hope - this is how it is." Jerry stressed that "as long as they have a life, they have a chance for a better life," and that we need to accept people with autism as they are.
Jerry acknowledged that there will be difficult days. Days when we will
want to give up. His answer to this was "I don't care how tough your
life is. This is what we've got and the fact that we're alive is a
miracle." He said, "when you feel those hopeless days, just thank God that
you're alive to feel this because you will come back." Jerry admired the
unity and strength in the Autism Society of Wisconsin's organization and
stressed the importance of sharing both the joys and sorrows with the
group. He said "every day the sun is going to come up - some days higher
than others for some - your day will come when the sun comes up for you."
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Jerry Newport, a cab driver with a degree in mathematics, was 40 years old when he saw the movie "Rain Man," starring Dustin Hoffman as an autistic savant.
There is a scene in which a doctor tosses a difficult multiplication problem at Hoffman's character, who gives the 8-figure answer with the speed of a person operating a calculator.
But not as fast as Newport, sitting in a darkened theater - a man who struggled his whole life to communicate, who had succeeded on tests but failed in life, who had twice tried to kill himself.
"I said it before he (Hoffman) said it," Newport recalled Saturday.
Newport was a keynote speaker at the 20th anniversary celebration and statewide conference of the Autism Society of Wisconsin, held for three days at the Park Plaza Paper Valley Hotel in downtown Appleton.
Burdened by a malfunctioning audio-visual system that seemed bent on defeating him, Newport ad libbed and offered a brilliant, emotional performance, moving an audience of 200 [sic 400] people from tears to laughter.
He can still perform amazing calculations inside his head. Give him your birth date, and he can quickly tell you how many days had passed in the 20th century on the day of your birth, and how many have passed since.
After seeing "Rain Man," Newport went to the University of California Los Angeles where he was diagnosed with a form of autism called Asperger's syndrome, less disabling than classic autism but still devastating, especially when not diagnosed.
Like many others with the syndrome, Newport is highly intelligent. But he suffers from neurological disorders that leave him severely sensitive to light and sound and fragrances and any unexpected physical contact from another person.
He asked his mother once why he was rarely hugged as a child.
"Because the minute you were born, you pushed me away," she told him.
He speaks haltingly and does not maintain eye contact. He can do a single task well, but can become paralyzed when required to handle several. As a child playing baseball, he never once caught a fly ball, distracted as he was by counting the daisies in the grass before him.
He now has a good, full-time job, as a financial assistant at UCLA. Once diagnosed, he formed one of the first self-run support groups for people struggling with any form of autism. As hard as it is for him to communicate, his humor and compassion make him a gifted speaker. He was featured on CBS's 60 minutes in 1996, and speaks to groups across the country.
As good as he is, it is still hard for him. He compared himself to a bird, always nervous, always ready to fly away.
"No matter how calm or how composed I seem at the moment, there is always part of me that says, "This is all too much."
As a child, Newport could never get in and out of conversations with the ease of his older brothers. He knew he was different, that just coping was often too much, that he would struggle his whole life to communicate, who had succeeded on tests but failed in life, who had twice tried to kill himself.
"I never knew when the next time would come," he said, "but I knew it would be too much, that I would melt down, and that people would be laughing at me."Opening his talk in Appleton, he spoke of his suicide attempts, which failed.
"Sometimes it's good to [be] incompetent at something," he joked. "It's like the kamikaze pilot who returned from 37 missions, always with a half tank of gas."
His message was one of compassion and hope. He urged others suffering from forms of autism not to give in to despair.
"The most important thing is that you are alive," he said.
Newport spoke of the life span of the universe, and how our own lives can be thought of as lasting only seconds by comparison.
"If you ever think it's all too much, and that you want to end it, why hurry?" he said. "You've only got 15 seconds left."
His greatest sadness was that he was never able to tell his parents how much they meant to him, how much he appreciated all they did for him. He spoke of crying at their gravestones, finally forming the words only after they were gone.
He spoke to the parents in the audience who try so hard to help their autistic children and who often don't receive signals of love in return.
"You need
to know you are the most important resources your children have," Newport
said. "You also need to know that no child is so needy that you have to
give up everything for that child."
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What parts of the brain are affected by autism, and how do they cause the behaviors? Eminent autism researcher Eric Courschene, Ph.D., explained what has been discovered so far through tissue and imaging studies in his keynote address to the 1999 ASW Conference. He stated that 95% of the people with autism autopsied have had abnormalities of the cerebellum. No other biological anomaly has that degree of frequency in people with autism. The number of autistic brains studied so far is only 40, so parents are being asked to donate tissue from their family members with autism after death through ASA's Autism Tissue Program, 1(800)333-0999, or http://www.autism-society.org
It used to be thought that the cerebellum controlled only motor functions, but it is now known that it does much more. The cerebellum is tightly packed with neurons, and has more neurons than the rest of the brain put together. It sends and receives messages from every area of the brain, and, along with the frontal cortex, is heavily involved in memory. Animal studies have confirmed that the cerebellum is involved in attention to novelty, self-stimulation, and social, emotional, and fear responses. The cerebellum also modulates the way you respond to sensory information and pain. Animal studies have shown that damage to the cerebellum results in less interest in and frequency of social contacts, and less fearfulness in situations where the animal should have been fearful.
The cerebellum is involved in sensory discrimination, attention, working memory, long-term memory, paired-associate memory, learning new skills, speech, complex problem-solving, concept formation, sequencing, and mental spatial exploration and imagery. All of these are affected in people with autism. A Minnesota study of neurologically typical people confirmed that the cerebellum is involved in the shifting of attention. The cerebellum also helps you to make predictions; it prepares the right part of the brain before it is needed. So if this mechanism is defective, you would miss a lot of information.
What is different about the cerebellums of individuals with autism? The whole posterior cerebellum is small, and the cerebellar vermis is reduced by 10-15%. According to a study by Ritvo, there is a 40-50% loss of Purkinje cells in individuals with autism. The inferior olive sends "climbing fibers" to the Purkinje cells, capturing them for specific cerebellar functions, such as motor functioning, speech, attention, etc. In neurologically typical people, there are plenty of Purkinje cells to allow the cells to specialize for these different functions. But in individuals with autism there are far fewer Purkinje cells, so each cell may have lots of climbing fibers for several different functions. Since each Purkinje cell may receive conflicting messages about what it should be doing at any time, the individual may experience difficulty performing the kinds of activities controlled by these cells. These abnormalities start very early in development, before birth.
Dr. Courschene suspects that in infants with autism, motor development grabs many of the smaller number of Purkinje cells available, reducing the number of neurons available for language and attention. This may be interruptible by early intervention that emphasizes the teaching of language. He cautions parents not to overemphasize the teaching of motor skills too early, because that might grab even more Purkinje cells that are needed for language learning and attention.
The loss of Purkinje cells, which modulate excitation of the brain, causes other brain abnormalities. Over excitement of the brain caused by the loss of Purkinje cells may cause overgrowth in other areas of the brain. Studies have shown that the frontal lobes of the cerebral cortex are larger in individuals with autism. Autopsy and imaging studies have confirmed that the more abnormalities in the cerebellum, the larger the frontal lobes are, although a causal relationship has not yet been proven. The overgrowth of the frontal lobes starts at some point between birth and age two, and continues until about age five or six. Dr. Courschene feels that these brain changes are genetic in origin, and not caused by a virus. But the fact that some of these changes take place after birth suggests the opportunity for intervention in the process.
The limbic system is another area of the brain in which abnormalities have been found in individuals with autism. Dr. Bauman found increased cell packing density in the limbic systems of people with autism. Anatomic abnormalities were found in autopsies of six people. Courschene and Smith, in MRI studies of the limbic system, found the dentate gyrus to be significantly smaller in people with autism. The dentate gyrus is strongly involved in memory. The dentate gyrus acquires new neurons throughout our lives. An enriched learning environment may increase the number of neurons, while stress may decrease the number. Dr. Courschene believes that stress related to information processing and sensory processing may cause a reduction in the number of dentate neurons in people with autism. The reduced dentate may be responsible for some individuals with autism having super memories without context He feels that stress reduction techniques and effective learning methods may spur the development of dentate neurons. In his imaging studies, he noted that between the ages of two and five, the dentate grows twice as fast in children with autism. This may be tied to the diagnosis and treatment of these children.
It is clear from this
summary that exciting developments are coming from research that will help
parents and professionals to devise more effective treatments for
individuals with autism. But in order for the pace of research to
accelerate, more brain tissue is needed. Please consider donating the
brain of your family member with autism after death, so that puzzle can be
solved.
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