This is an exciting time in the field of autism research. Due to advances in research techniques and increased funding for autism research, we are discovering new things about the nature and causes of autism, things that should have profound implications for treatment.
For example, we now know that autism is characterized by differences in brain structure and neural “wiring” compared with typical individuals. We know that those differences in brain structure are related to difficulties in information processing for individuals with autism. Such processing challenges affect the individuals’ capacities for specific mental abilities, such as taking in, understanding and responding to novel information, experience sharing, empathizing, appraising, categorizing, and evaluating information and stimuli for appropriate meaning, and thinking flexibly and creatively. We can refer to these abilities as “dynamic thinking” abilities. These are the core issues in autism. These processing difficulties are what cause the distinctive behaviors that characterize autism. The behaviors themselves are not the autism.
Intervention programs aimed at remediating autism need to address the tough questions related to the core information processing issues: 1. Can we design an intervention program that will train the brains of individuals with autism to process information more like typical individuals do? 2. What would such a program look like?
Unfortunately, most of the autism interventions today focus on changing the behaviors to be more socially acceptable, but do not address the core processing challenges. More and more autism professionals are beginning to talk about these processing challenges. This is a good sign. Clearly, they read the same research I do. Nevertheless, the autism professional community still appears to have a focus on producing socially acceptable behaviors. They are not asking the tough questions. They are not asking whether there is a way to remediate the processing challenge that caused the unacceptable behavior in the first place. Without addressing and remediating the core deficit areas, persons with autism have little chance for an independent life in adulthood. They will always be dependent on others.
These are strong statements, I know. Allow me to share an example to illustrate my point.
Recently I attended a lecture by a noted autism expert. I have great respect for this person's competence in his specific area of expertise, which happens to be behavial science. He also seems like a really nice guy. So, any critical comments here are not aimed at the person, merely at the method and the focus.
This speaker recounted a story of how he had been working with an ASD young man to teach him independent living skills. The current skill they were working on was independently shopping – selecting an item, going through the checkout line, and using a credit card to pay for it. As an aside, the speaker told the audience that the young man’s facilitators had decided to give him only a credit card, not a debit card, because they felt that he might inappropriately reveal the PIN of a debit card upon being questioned for it. The speaker commented that the young man had received so much drilling during his life: What’s your name, what’s your address, what’s your phone number, etc., and had gotten so used to automatically answering these questions, they feared that he would inappropriately give out his PIN when asked “What’s the PIN of your debit card?” not realizing the sensitivity of the information.
Bingo, I thought. Here is an example of a core deficit of autism – inability to evaluate and appraise information and circumstances for appropriate meaning. I hope this deficit is being addressed in his intervention plan, I thought.
The speaker showed us a video clip of this young man going through the checkout line. The cashier, by the way, had been prepped on how to scaffold the interaction – a good thing, I thought. I watched the clip and thought, “That seemed to go pretty well. He stood line, swiped his card, paid, and left.” The speaker noted he thought the encounter had been successful other than the fact that it took the young man a long time to swipe his card. I had not noticed this as being an issue because, hey, sometimes it takes me a long time to figure out those God-awful swipe machines myself. The speaker then asked the audience what skill we thought should be addressed next. I thought of a lot of things related to the core deficit areas of autism.
What was the answer? Card swiping fluency. That was it. There was no mention of any other challenges that would be dealt with in the future. Hmm, I thought. Card swiping fluency. A socially meaningful behavior, to be sure. But is teaching fluency in card swiping really that important? Isn’t this something he will pick up on his own as he shops more and more?
The speaker mentioned that he thought teaching this young man card swiping fluency was important because, if he swiped too slow, people behind him in line might get annoyed with him. So, it appeared that the next step in the intervention program would be lots of drilling on proper card swiping technique.
Wait a minute, I thought. How about letting the people in line behind him motivate him to speed up? “Excuse me, we are in a hurry. Can I help you with that?” Or even, “Come on, buddy, move it!” These are the types of social encounters we all have to deal with, every day, after all.
No one taught me how to swipe my card quickly in order to shelter me from the wrath of the customers behind me. When I fumble up my swiping, or when I have a huge grocery order, or when I screw up the self-scan mechanism, which I often do, I have to deal with exasperated sighs. I have to experience the guilt for delaying those folks, or the annoyance at them for having the nerve to rush me. I have to figure out how to respond – to apologize, to placate them, to stand up for myself. I have to experience the consequences of my response. This is dynamic thinking.
Is teaching card swiping fluency going to teach this young man how to handle the unavoidable dynamic elements of the shopping experience? Or is it merely a compensatory strategy which allows him to circumvent the dynamic thinking challenges that all of us must encounter every day? Will this man’s intervention program continue to revolve around mastering so-called “functional skills” at the expense of his learning how to THINK?
In watching the video and hearing the speaker’s narrative, I thought of many core areas of deficit that needed to be addressed with this young man: Perspective taking. Awareness of his environment. Awareness of his level of arousal and physical regulation or dysregulation (he tended to flap his arms). Ability to appraise situations and circumstances for appropriate meaning. Emotional regulation. Experience sharing. All areas that deal with his internal cognitive processes. His THINKING.
To be fair to the presenter, it is possible that these areas are indeed being addressed with this young man. But the presenter made no mention of them. I had the distinct feeling that the speaker considered these deeper challenge areas beyond hope, or at least beyond the scope of his intervention services.
So this young man will become proficient at swiping his card, I have no doubt. Because if you drill a person in a skill enough times, the person will learn the skill. There are reams of behavioral studies in the field of autism to back up this claim. But is this young man really on the path to living an independent life? From my perspective, no.
Autism professionals: listen up. When you think “functional skills,” please don’t think “card swiping fluency.” Think, instead, “ability to think and respond in a flexible manner to enable one to function in our dynamic world in everyday life.” Think remediation. Not compensation.
Dr. Steven Gutstein designed the RDI® Program with this paradigm of remediation in mind. I became certified in RDI® because I, too, share this vision.
If all autism professional shared this mindset of remediation, we would not have to “teach” this young man card swiping fluency. He would figure it out on his own or ask others to help him because he would realize its importance in certain situations. And he would have a debit card because he would know when and when not to divulge his PIN.
Of course remediation is possible. But first, all of us autism professionals need to believe that is it possible. Then we all need to get to work to make it happen. Not just for this young man. For the millions of individuals with autism who will not achieve a true quality of life without it.
Let’s do it.
Thursday, May 6, 2010
Monday, April 19, 2010
Helping Your Child's Communication: Get out of the "Overcompensation Trap"
THE OVERCOMPENSATION TRAP
Many parents of children with autism unknowingly overcompensate for their child's deficits in communication competence. Often parents (and other communication partners), without consciously realizing, do most of the "work" in keeping the social exchange going. The child may initiate communication, but walk away without waiting for a response. The parent will then follow the child around in an attempt to keep the communication going. Or, the child may speak, but not be oriented toward the partner. The parent may then move his body or face toward the child in order to maintain the social connection. Parents who have challenges “getting a response” from their child may frequently prompt the child for language, believing that prompting for a response is the "only way" to have a relationship with their child. Parents may also believe that, given enough prompting, their child will “eventually” learn to have a typical conversation without prompting. Alternatively, parents may continually try to adapt to the child’s interests or agenda in an effort to establish or maintain a social connection.
Parents, think again! In continually adapting to your child or being overly directive with him, you are reinforcing his feeling that other people will do most of the "work" in the communication exchange - either by directing the exchange for him or by adapting to him. You are promoting the idea of a social exchange as a controlled or controlling encounter by one partner or the other. You are in what I call the "overcompensation trap."
GETTING OUT OF THE "TRAP"
There are many things that you, the parent, can do to start getting out of the overcompensation trap and help your child learn to do more of the "work" in communicating. Here are a few:
1. THINK about how much work you vs. the child are doing in initiating communication or keeping the communication going. You may come to the conclusion that you are doing most or all the work. This revelation is empowering in itself. It should lead you to ask: How can I help my child to take on more of the responsibility in the communication exchange?
True social communication, after all, is a balanced exchange, with both partners doing more or less an equal share in keeping the exchange going and adapting to each other's topical agenda and emotional state. In a real-life social situation, each partner is continuously adapting to the mental state and needs of the social partner(s), while being mindful of his own mental state and needs. The social encounter that unfolds represents something completely novel, borne of out of this continuous mutual adaptation. Such mutual adjustment is referred to as social "coregulation." In autism, coregulation often is lacking due to the child's difficulties with adapting to the needs and mental state of the social partner. Thus, the social encounter is often one-sided, and the result is often based on the agenda of the parent only, or the child only, but not both together.
For more reading about coregulation, parents are encouraged to read Alan Fogel's book "Developing Through Relationships," one of the works that inspired the RDI® Program. The book may be purchased through the www.rdiconnect.com website.
2. SLOW DOWN to think and to let your child think. Parents sometimes believe that prompting or maintaining a lot of language is the key to their child's progress. This is not the case if the language is not the result of productive thought or "mindfulness." True social communication involves thinking and responding flexibly within social exchanges which, in most cases, don't involve direct prompts. It is important for parents to build the child's competence in flexible and creative thinking during social exchanges, not merely building proficiency in responding to prompted language or using social scripts. Slowing down the pace of your communication and waiting before you speak or respond to the child's communication will allow you time to think about the encounter, moment to moment, and will allow your child critical time to think and problem solve under your guidance.
3. REQUIRE MORE than just words in the communication exchange. Some parents accept a communication exchange that is solely language based. They may talk at the back of the child's head or accept a communication exchange with a child who is running away, bouncing around the room, or climbing all over the parent. Parents who accept such limited exchanges may feel that their child can never be competent with true social communication, which involves many "channels" of communication used simultaneously. These channels include not only language, but also facial communication, vocal prosody, gestures, body language, personal space, etc.
EXPERIENCE OF AN RDI PARENT
In addition to being an RDI Program Certified Consultant, I am a parent of a child on the autism spectrum. Our family has been involved in an RDI program for about five years. So how do I make sure that I am not falling into the overcompensation trap myself?
I have learned to raise the bar in my mind as to what my son's potential is in communication competence. I have learned to create and spot opportunities for my son to be challenged to be a better communicator. I focus on his thought process through the encounter. And afterwards, I replay the incident in my mind to assess: What did I learn? What did HE learn? Let me give an example of a situation I have encountered in the past with my son:
•Matt begins to talk to me, face to face, and then walks away from me into another room, while continuing to talk.
•I am tempted to follow him to hear what he is saying. I am also tempted to prompt him to come back into the room. But I stop myself. I think about the concept of communicative balance and partners having equal responsibility to maintain interactions and repair breakdowns. I think: Whoa! He is disconnecting from me facially and physically. He is causing a breakdown in our communication exchange. So, I must not overcompensate. I must let him REPAIR this disconnection. I WILL NOT do it for him.
•I realize that there is a Stage 3 RDI® child objective that addresses this very issue. The objective relates to the child’s understanding that communication partners must be both physically and mentally available in the communication exchange in order for the exchange to be effective. This is a mental discovery that a typical child makes by the time he or she is three years old.
•What do I do to scaffold or assist my son in making this discovery? For the moment, I do NOTHING. I just stand there, silently, rooted to the spot. And I wait. I am intending to create a situation of PRODUCTIVE UNCERTAINTY for him, a state of consciousness in which he feels a mental tension and is challenged to respond in a flexible manner, but not obligated to do so.
•Within about twenty seconds, he feels the uncertainty. He realizes that he is talking at the air; his communication partner is no longer within range. The communication exchange has broken down. So he must make a decision. If he wants to repair the communication, he must do the work. He must seek me out.
•He does. He walks back to me. He continues talking. I say nothing. I let him finish. I wait to make sure he is attending me. Then I say "I missed the part where you walked away from me." Again, he experiences productive uncertainty. What should he do? He has to decide. If he wants to repair the communication exchange, he has to figure out what part I missed and repeat it. But he is not forced to. He is free to say "Oh, that's too bad!" and walk away if he wants to! He is free to respond any way he wishes. My only requirement is that he processes and thinks about MY communication to him.
•He chooses to repeat the part of his story I missed, and the conversation continues. I do not praise him for anything he said or did. We just keep talking. (At times I may praise him for his accomplishments. I don’t praise his behavior; rather, I spotlight (emphasize) his competence as a thinker.)
In the above example, I first needed to be mindful about my own thought process and actions, in order to allow my son to make new mental discoveries. I needed to think about the three principles above. I needed to keep myself from falling into the overcompensation trap.
What did my son learn based on my thoughtful responses to his behavior? With the deliberate scaffolding from me, he learned that he can recognize and successfully repair communication breakdowns without being directly prompted to do so. He demonstrated a step toward greater competence as a communicator.
NEXT STEPS FOR PARENTS
Any parent can do what I do. However, for most, it takes effort to learn to recognize and make use of learning opportunities throughout daily life with your child. In many cases parents need to “retrain” their brains to stop thinking about task completion and behaviors as end goals and to think instead about the child’s mental processes. This is where RDI® Program certified consultants come in. RDI® consultants guide parents in the process of retraining their brains so that they can be effective guides to their child’s cognitive development. RDI® consultants help parents become aware of the areas in which they may be overcompensating for their child's communication deficits. Consultants train parents in the level of support or scaffolding that provides optimal learning opportunities for their child. Consultants also train parents in ways to frame or structure guided learning situations so as to minimize distractions and maximize the chance for new mental processes to develop. Finally, consultants teach parents how to identify and "spotlight" key learning moments so that the new mental discovery and feeling of competence will be captured in the child's memory.
My son is quite a competent communicator now (although he has not always been!) and needs minimal framing, scaffolding and spotlighting. Most children, however, would need higher levels of support for optimal learning. RDI® consultants customize parent training to account for the level of support the child needs at any point in time for successful cognitive development.
Parents do not have to be stuck in the overcompensation trap any longer! Changing the approach to the way you interact with your child can make all the difference in his or her mental development and long-term outcome. If you would like to be empowered to make such a difference for your child, contact an RDI® Program Certified Consultant for more information about The RDI® Program for autism remediation. See www.rdiconnect.com for list of consultants by area. Long-distance consulting is also available for families in areas with no local consultant.
Many parents of children with autism unknowingly overcompensate for their child's deficits in communication competence. Often parents (and other communication partners), without consciously realizing, do most of the "work" in keeping the social exchange going. The child may initiate communication, but walk away without waiting for a response. The parent will then follow the child around in an attempt to keep the communication going. Or, the child may speak, but not be oriented toward the partner. The parent may then move his body or face toward the child in order to maintain the social connection. Parents who have challenges “getting a response” from their child may frequently prompt the child for language, believing that prompting for a response is the "only way" to have a relationship with their child. Parents may also believe that, given enough prompting, their child will “eventually” learn to have a typical conversation without prompting. Alternatively, parents may continually try to adapt to the child’s interests or agenda in an effort to establish or maintain a social connection.
Parents, think again! In continually adapting to your child or being overly directive with him, you are reinforcing his feeling that other people will do most of the "work" in the communication exchange - either by directing the exchange for him or by adapting to him. You are promoting the idea of a social exchange as a controlled or controlling encounter by one partner or the other. You are in what I call the "overcompensation trap."
GETTING OUT OF THE "TRAP"
There are many things that you, the parent, can do to start getting out of the overcompensation trap and help your child learn to do more of the "work" in communicating. Here are a few:
1. THINK about how much work you vs. the child are doing in initiating communication or keeping the communication going. You may come to the conclusion that you are doing most or all the work. This revelation is empowering in itself. It should lead you to ask: How can I help my child to take on more of the responsibility in the communication exchange?
True social communication, after all, is a balanced exchange, with both partners doing more or less an equal share in keeping the exchange going and adapting to each other's topical agenda and emotional state. In a real-life social situation, each partner is continuously adapting to the mental state and needs of the social partner(s), while being mindful of his own mental state and needs. The social encounter that unfolds represents something completely novel, borne of out of this continuous mutual adaptation. Such mutual adjustment is referred to as social "coregulation." In autism, coregulation often is lacking due to the child's difficulties with adapting to the needs and mental state of the social partner. Thus, the social encounter is often one-sided, and the result is often based on the agenda of the parent only, or the child only, but not both together.
For more reading about coregulation, parents are encouraged to read Alan Fogel's book "Developing Through Relationships," one of the works that inspired the RDI® Program. The book may be purchased through the www.rdiconnect.com website.
2. SLOW DOWN to think and to let your child think. Parents sometimes believe that prompting or maintaining a lot of language is the key to their child's progress. This is not the case if the language is not the result of productive thought or "mindfulness." True social communication involves thinking and responding flexibly within social exchanges which, in most cases, don't involve direct prompts. It is important for parents to build the child's competence in flexible and creative thinking during social exchanges, not merely building proficiency in responding to prompted language or using social scripts. Slowing down the pace of your communication and waiting before you speak or respond to the child's communication will allow you time to think about the encounter, moment to moment, and will allow your child critical time to think and problem solve under your guidance.
3. REQUIRE MORE than just words in the communication exchange. Some parents accept a communication exchange that is solely language based. They may talk at the back of the child's head or accept a communication exchange with a child who is running away, bouncing around the room, or climbing all over the parent. Parents who accept such limited exchanges may feel that their child can never be competent with true social communication, which involves many "channels" of communication used simultaneously. These channels include not only language, but also facial communication, vocal prosody, gestures, body language, personal space, etc.
EXPERIENCE OF AN RDI PARENT
In addition to being an RDI Program Certified Consultant, I am a parent of a child on the autism spectrum. Our family has been involved in an RDI program for about five years. So how do I make sure that I am not falling into the overcompensation trap myself?
I have learned to raise the bar in my mind as to what my son's potential is in communication competence. I have learned to create and spot opportunities for my son to be challenged to be a better communicator. I focus on his thought process through the encounter. And afterwards, I replay the incident in my mind to assess: What did I learn? What did HE learn? Let me give an example of a situation I have encountered in the past with my son:
•Matt begins to talk to me, face to face, and then walks away from me into another room, while continuing to talk.
•I am tempted to follow him to hear what he is saying. I am also tempted to prompt him to come back into the room. But I stop myself. I think about the concept of communicative balance and partners having equal responsibility to maintain interactions and repair breakdowns. I think: Whoa! He is disconnecting from me facially and physically. He is causing a breakdown in our communication exchange. So, I must not overcompensate. I must let him REPAIR this disconnection. I WILL NOT do it for him.
•I realize that there is a Stage 3 RDI® child objective that addresses this very issue. The objective relates to the child’s understanding that communication partners must be both physically and mentally available in the communication exchange in order for the exchange to be effective. This is a mental discovery that a typical child makes by the time he or she is three years old.
•What do I do to scaffold or assist my son in making this discovery? For the moment, I do NOTHING. I just stand there, silently, rooted to the spot. And I wait. I am intending to create a situation of PRODUCTIVE UNCERTAINTY for him, a state of consciousness in which he feels a mental tension and is challenged to respond in a flexible manner, but not obligated to do so.
•Within about twenty seconds, he feels the uncertainty. He realizes that he is talking at the air; his communication partner is no longer within range. The communication exchange has broken down. So he must make a decision. If he wants to repair the communication, he must do the work. He must seek me out.
•He does. He walks back to me. He continues talking. I say nothing. I let him finish. I wait to make sure he is attending me. Then I say "I missed the part where you walked away from me." Again, he experiences productive uncertainty. What should he do? He has to decide. If he wants to repair the communication exchange, he has to figure out what part I missed and repeat it. But he is not forced to. He is free to say "Oh, that's too bad!" and walk away if he wants to! He is free to respond any way he wishes. My only requirement is that he processes and thinks about MY communication to him.
•He chooses to repeat the part of his story I missed, and the conversation continues. I do not praise him for anything he said or did. We just keep talking. (At times I may praise him for his accomplishments. I don’t praise his behavior; rather, I spotlight (emphasize) his competence as a thinker.)
In the above example, I first needed to be mindful about my own thought process and actions, in order to allow my son to make new mental discoveries. I needed to think about the three principles above. I needed to keep myself from falling into the overcompensation trap.
What did my son learn based on my thoughtful responses to his behavior? With the deliberate scaffolding from me, he learned that he can recognize and successfully repair communication breakdowns without being directly prompted to do so. He demonstrated a step toward greater competence as a communicator.
NEXT STEPS FOR PARENTS
Any parent can do what I do. However, for most, it takes effort to learn to recognize and make use of learning opportunities throughout daily life with your child. In many cases parents need to “retrain” their brains to stop thinking about task completion and behaviors as end goals and to think instead about the child’s mental processes. This is where RDI® Program certified consultants come in. RDI® consultants guide parents in the process of retraining their brains so that they can be effective guides to their child’s cognitive development. RDI® consultants help parents become aware of the areas in which they may be overcompensating for their child's communication deficits. Consultants train parents in the level of support or scaffolding that provides optimal learning opportunities for their child. Consultants also train parents in ways to frame or structure guided learning situations so as to minimize distractions and maximize the chance for new mental processes to develop. Finally, consultants teach parents how to identify and "spotlight" key learning moments so that the new mental discovery and feeling of competence will be captured in the child's memory.
My son is quite a competent communicator now (although he has not always been!) and needs minimal framing, scaffolding and spotlighting. Most children, however, would need higher levels of support for optimal learning. RDI® consultants customize parent training to account for the level of support the child needs at any point in time for successful cognitive development.
Parents do not have to be stuck in the overcompensation trap any longer! Changing the approach to the way you interact with your child can make all the difference in his or her mental development and long-term outcome. If you would like to be empowered to make such a difference for your child, contact an RDI® Program Certified Consultant for more information about The RDI® Program for autism remediation. See www.rdiconnect.com for list of consultants by area. Long-distance consulting is also available for families in areas with no local consultant.
Friday, April 2, 2010
What Referencing Looks Like
Here is a video of my kids coloring eggs. You'll notice the excellent referencing by my ASD son and the coordinated singing with his sister, in a song she initiated.
Tuesday, March 30, 2010
Aspergers Remediation Story From South Africa
An RDI mom friend of mine sent me this story about a young man with Aspergers Syndrome in South Africa. The article recounts his story and mentions that his mother believes that RDI has been critical to his progress toward independence.
Sunday, March 28, 2010
Thursday, February 11, 2010
Control in autism: Part One - The need for control
Control is a big issue in autism. It is so big, that I will say that the need for control is central to the condition of autism itself.
In posting on the subject of control in autism, I have three main goals. The first is to educate parents on how and why their child with autism controls. The second is to make parents aware of their own role in their child's need for control. The third is to give parents ideas of how to help their child overcome his or her need for control through altering the parent-child relationship dynamic.
Control in autism often relates to the way persons with autism interact with the social world. For example, persons with autism may have an insistence on their own "agenda" and a corresponding resistence to adapting to the agendas or schedules of others; may use others (in particular parents) as "tools" to meet their own needs; and/or may restrict or manipulate conversation topics to their own obsessive areas of interest.
But not all persons with autism display these obvious methods of control. For some persons with autism, control comes in the form of social isolation or indifference, manipulating objects in the physical environment, and/or moving or manipulating their physical body (or some aspect of it, such as voice) in ways that provide them with a greater sense of control.
Why the great need for control in autism? To examine this question, it is worth reviewing the research behind the need for control in typical human beings, then applying what we know about the neurology of autism and the dynamics of relationships.
All people have a deep need for a sense of control. When we don't feel "in control" we experience a feeling of tension from the discord between what we perceive as our equilibrium state and the evidence we have that we are "out" of our equilibrium state. Changingminds.org contains an excellent piece on the need for control in humans. The piece breaks down our need for control into the following components:
-An evolutionary need; being in control of our environment would more likely result in our survival (This need is related to our biochemical "fight or flight" response when we perceive a threat to our safety)
-A sense of certainty
-Completion of outstanding things, so we don't have to worry about them.
-Being able to predict what will happen
-That people (including ourselves) and things are consistent
I want to focus on two items in the above list: "A sense of certainty" and "That people and things are consistent." Having "a sense of certainty" requires that we be able to make sense of the world. We must be able to take in, assess, synthesize, organize, categorize, prioritize, and draw conclusions about every "input" that we experience - physically, through the senses, and mentally. In order to have a sense "That people and things are consistent" we must have an ability recognize patterns in the world around us amid constant variation, understand "sameness" within differences.
If we cannot make sense of the inputs to our nervous systems, if we cannot organize and structure information about our world in a meaningful, cohesive way, if we can't recognize the central patterns within our ever-changing environment, we are left with overwhelming feelings of "uncertainty." Such is the experience of autism.
Neurologically, what causes these deficits in autism? The research literature is converging on an understanding of autism as a disorder of information processing. Twenty years ago, Nancy Minshew and her colleagues at the University of Pittsburg first proposed the "underconnectivity" hypothesis of autism. This hypothesis continues to be supported in more current studies, so much so that it is now one of the accepted central theories of autism. The hypothesis proposes that autism is a disorder of higher level information processing characterized by insufficient long-range neural connectivity between and among major brain centers and an overabundance of "local" neural connectivity within brain centers. The lack of sufficient connectivity between different brain centers is related to the difficulties we see in persons with autism making sense of their world.
In order to synthesize, categorize, organize, and prioritize information from the environment, brain centers with different purposes must work together. For example, the prefrontal cortex and the limbic systems must work together in order to process information from the physical environment in an emotionally meaningful way. If these two areas do not work together properly, physical or sensory information could be interpreted in bizarre, confusing or threatening ways. One would have a difficult time drawing from past experience to help make sense of our current experience. One would be left with a sense of "uncertainty." One would feel a great need to extert some type of control, to relieve the tension due to this perception of uncertainty.
Uncertainty, like autism itself, can be conceptualized in a "spectrum" way. One's perceived level of uncertainty can be high, low, or in-between. If the level of uncertainty is (too) high, the situation is perceived as threatening. If, on the other hand, the level of uncertainty is (too) low, one might feel, bored, unmotivated, "in a rut". There is too much "certainty." If the level of uncertainty is at the "right" level, the situation is perceived as exciting, interesting. The uncertainty then is "productive." We all need a balance between "certainty" and "productive uncertainty" in our lives. At times we also must cope with and appropriately resolve "unproductive" uncertainty. But autism renders persons in states of "unproductive uncertainty" quite often. For persons with autism, the frequent perception of threat from the environment results in tension, anxiety and a need for control.
In Part Two, I will discuss the parent's and caregiver's role in the need for control in autism.
In posting on the subject of control in autism, I have three main goals. The first is to educate parents on how and why their child with autism controls. The second is to make parents aware of their own role in their child's need for control. The third is to give parents ideas of how to help their child overcome his or her need for control through altering the parent-child relationship dynamic.
Control in autism often relates to the way persons with autism interact with the social world. For example, persons with autism may have an insistence on their own "agenda" and a corresponding resistence to adapting to the agendas or schedules of others; may use others (in particular parents) as "tools" to meet their own needs; and/or may restrict or manipulate conversation topics to their own obsessive areas of interest.
But not all persons with autism display these obvious methods of control. For some persons with autism, control comes in the form of social isolation or indifference, manipulating objects in the physical environment, and/or moving or manipulating their physical body (or some aspect of it, such as voice) in ways that provide them with a greater sense of control.
Why the great need for control in autism? To examine this question, it is worth reviewing the research behind the need for control in typical human beings, then applying what we know about the neurology of autism and the dynamics of relationships.
All people have a deep need for a sense of control. When we don't feel "in control" we experience a feeling of tension from the discord between what we perceive as our equilibrium state and the evidence we have that we are "out" of our equilibrium state. Changingminds.org contains an excellent piece on the need for control in humans. The piece breaks down our need for control into the following components:
-An evolutionary need; being in control of our environment would more likely result in our survival (This need is related to our biochemical "fight or flight" response when we perceive a threat to our safety)
-A sense of certainty
-Completion of outstanding things, so we don't have to worry about them.
-Being able to predict what will happen
-That people (including ourselves) and things are consistent
I want to focus on two items in the above list: "A sense of certainty" and "That people and things are consistent." Having "a sense of certainty" requires that we be able to make sense of the world. We must be able to take in, assess, synthesize, organize, categorize, prioritize, and draw conclusions about every "input" that we experience - physically, through the senses, and mentally. In order to have a sense "That people and things are consistent" we must have an ability recognize patterns in the world around us amid constant variation, understand "sameness" within differences.
If we cannot make sense of the inputs to our nervous systems, if we cannot organize and structure information about our world in a meaningful, cohesive way, if we can't recognize the central patterns within our ever-changing environment, we are left with overwhelming feelings of "uncertainty." Such is the experience of autism.
Neurologically, what causes these deficits in autism? The research literature is converging on an understanding of autism as a disorder of information processing. Twenty years ago, Nancy Minshew and her colleagues at the University of Pittsburg first proposed the "underconnectivity" hypothesis of autism. This hypothesis continues to be supported in more current studies, so much so that it is now one of the accepted central theories of autism. The hypothesis proposes that autism is a disorder of higher level information processing characterized by insufficient long-range neural connectivity between and among major brain centers and an overabundance of "local" neural connectivity within brain centers. The lack of sufficient connectivity between different brain centers is related to the difficulties we see in persons with autism making sense of their world.
In order to synthesize, categorize, organize, and prioritize information from the environment, brain centers with different purposes must work together. For example, the prefrontal cortex and the limbic systems must work together in order to process information from the physical environment in an emotionally meaningful way. If these two areas do not work together properly, physical or sensory information could be interpreted in bizarre, confusing or threatening ways. One would have a difficult time drawing from past experience to help make sense of our current experience. One would be left with a sense of "uncertainty." One would feel a great need to extert some type of control, to relieve the tension due to this perception of uncertainty.
Uncertainty, like autism itself, can be conceptualized in a "spectrum" way. One's perceived level of uncertainty can be high, low, or in-between. If the level of uncertainty is (too) high, the situation is perceived as threatening. If, on the other hand, the level of uncertainty is (too) low, one might feel, bored, unmotivated, "in a rut". There is too much "certainty." If the level of uncertainty is at the "right" level, the situation is perceived as exciting, interesting. The uncertainty then is "productive." We all need a balance between "certainty" and "productive uncertainty" in our lives. At times we also must cope with and appropriately resolve "unproductive" uncertainty. But autism renders persons in states of "unproductive uncertainty" quite often. For persons with autism, the frequent perception of threat from the environment results in tension, anxiety and a need for control.
In Part Two, I will discuss the parent's and caregiver's role in the need for control in autism.
Wednesday, February 3, 2010
Bullying
Today I read an article on bullying that, judging by the comments under the article, upset some people. The article implied that individuals who are bullied sometimes bear part of the blame for being bullied. Many of the commenters felt that this perspective was unfair, they felt that bullied children are innocent victims and the fault lies with the bullier.
Children with autism are often at the receiving end of bullying. I have heard that the more severely affected children are left alone; it is the "higher functioning" children who suffer most. Well-meaning parents and professionals work hard to minimize bullying of children with autism, educating other children and staff about the disorder, counseling children about inclusion and acceptance of differences, emphasizing kindness. So far, so good. But what's the missing link here? The bullied child himself.
Allow me to share my perspective on this topic as it relates to autism. My son is one of those individuals on the "higher end" of the spectrum. He has been bullied. He also has been a bully. He would not consider it bullying. He would consider it "making people do what they are supposed to be doing to follow the rules." Controlling. Annoying. Bossing. I could excuse his bullying because of his disorder. But I don't believe there is any excuse for bullying, period. Autism nonwithstanding.
Relationships and social interactions are dynamic. Do something that I perceive as annoying, even slightly, and that changes the way I treat you. If I even observe you treating others in a way I perceive as annoying, bullying, controlling, etc., that changes the social dynamic between us. Our perception is our reality.
We had an incident in school in which my son came home and told me some boys had bullied him in school. From his story, he was standing innocently in the lunch line when a boy in front of him told him he was going to stick his head down the toilet. I asked him if he thought he had done anything to provoke the boy and my son said "no." I contacted the school and had the social worker talk to all the boys, on the assumption that my son's behavior also had played a part in the incident, while not by any means excusing the behavior of the other boy. Sure enough, when my son came home from school after the meeting with the social worker, he now remembered that he had been bossing some kids in line right before the boy's comment. The boy had reacted out of frustration at my son's bossing of the other kids. It was not clear whether my son has been less-than-truthful with me before, or whether he had honestly forgotten his part in the incident. At any rate, all parties apologized to each other, and hopefully we can put that one behind us.
My role after that incident was to help my son slowly understand his role in the relationship dynamics that sometimes end up in bullying. We did talk about it, and the conversation ended by him saying "I think I need some lessons in how not to be controlling of people." Yeah, Matt. Great idea!
Children with autism are often at the receiving end of bullying. I have heard that the more severely affected children are left alone; it is the "higher functioning" children who suffer most. Well-meaning parents and professionals work hard to minimize bullying of children with autism, educating other children and staff about the disorder, counseling children about inclusion and acceptance of differences, emphasizing kindness. So far, so good. But what's the missing link here? The bullied child himself.
Allow me to share my perspective on this topic as it relates to autism. My son is one of those individuals on the "higher end" of the spectrum. He has been bullied. He also has been a bully. He would not consider it bullying. He would consider it "making people do what they are supposed to be doing to follow the rules." Controlling. Annoying. Bossing. I could excuse his bullying because of his disorder. But I don't believe there is any excuse for bullying, period. Autism nonwithstanding.
Relationships and social interactions are dynamic. Do something that I perceive as annoying, even slightly, and that changes the way I treat you. If I even observe you treating others in a way I perceive as annoying, bullying, controlling, etc., that changes the social dynamic between us. Our perception is our reality.
We had an incident in school in which my son came home and told me some boys had bullied him in school. From his story, he was standing innocently in the lunch line when a boy in front of him told him he was going to stick his head down the toilet. I asked him if he thought he had done anything to provoke the boy and my son said "no." I contacted the school and had the social worker talk to all the boys, on the assumption that my son's behavior also had played a part in the incident, while not by any means excusing the behavior of the other boy. Sure enough, when my son came home from school after the meeting with the social worker, he now remembered that he had been bossing some kids in line right before the boy's comment. The boy had reacted out of frustration at my son's bossing of the other kids. It was not clear whether my son has been less-than-truthful with me before, or whether he had honestly forgotten his part in the incident. At any rate, all parties apologized to each other, and hopefully we can put that one behind us.
My role after that incident was to help my son slowly understand his role in the relationship dynamics that sometimes end up in bullying. We did talk about it, and the conversation ended by him saying "I think I need some lessons in how not to be controlling of people." Yeah, Matt. Great idea!
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