Tuesday, December 14, 2010

Aggression in Autism - Solutions through the Guided Participation Relationship

Do you have a child with autism who displays aggression? Are you bruised, stressed and feeling hopeless, after being subjected to years of being the target of your child’s frustration? Do you desperately want to help your child learn to manage his anger so that, when he grows to be a teen or an adult, he can handle his frustration in socially acceptable ways, and you can feel comfortable about your safety and the safety of others?

I remember well my own experience with my son, diagnosed with autistic disorder at age 2, with confirming diagnoses at ages 3 and 4. I had to cut my hair short to curb his tendency to pull my hair. I was pinched, bitten, and head-butted regularly. We had holes in our sheetrock walls from his head banging. He knocked out part of his two front baby teeth banging his face on the tile floor.

I tried to predict what would set him off, and make adjustments accordingly; but this proved impossible. The littlest things would set off a tantrum, aggression and self-injury.

When Matt was five, we found a solution to the aggression and his other core issues: the RDI® program. It was not a quick fix, but over time, we saw results. So I thought I would explain here the basics of the program and how it can improve a person’s ability to regulate emotion and manage anger.

The RDI® program is not what some people think it is. It is not a program that teaches “social skills.” It is not a program that teaches rote cooperation in meaningless tasks. Neither is it meant to place the entire task of “recovering” the child on the parents, a burden that, quite understandably, is overwhelming to many parents.

The core purpose of the RDI® program is to develop what we call the “Guided Participation Relationship” (GPR) between parents and child. If there is one concept that underpins the GPR, it is “trust.” If a child trusts you, the parent, the child will use you as a reference point in resolving any situation he comes upon in life, in which he experiences uncertainty. The child will not only look to you for help to get his needs met (opening a jar, getting a snack, etc.) but will also be interested in your mental perspective in a situation, and use that perspective to shape his OWN mental perspective.

Think of how typical children look to their parents to assess the safety of a new situation, such as being approached by a large dog or a stranger. Based on the parent’s feedback to them (through face, voice and actions) the child experiences the new situation as safe or threatening. The child’s mind is being shaped by what is in his PARENT’S mind. Typical children who have a strong GPR with their parents will also seek out their parents for sharing purposes. Children do this for one central purpose: They are interested in integrating their parent’s mental perspective with their own. They are motivated to improve their mind, to expand their knowledge of the world, by “borrowing” the perspectives of their parents and, later, other adults and peers.

ASD persons usually have difficulty with using others as reference points to resolve uncertainty. Why? Because of a predisposition toward favoring “things” over social feedback, ASD infants do not develop the normal nonverbal back-and-forth social interplay that characterizes typical parent-infant communication. It is this early fluid social “dance” between typically developing children and parents that sets the groundwork for the child’s establishment of the parent as the central reference point for both social reinforcement and for resolving uncertainty. Through continual feedback from the typical child, the parent becomes adept at presenting the child with the amount of challenge that is "just right" for the child in most situations. Parents adjust the level of challenge they present to the child in many ways - such as how the parent communicates with the child (pace, amount of language, type of language, prosody, body position, etc.), in what types of tasks to present to the child, and in how much assistance to give to the child in any task or exchange.

Through the early emotion-based communication exchanges between parents and very young children, the social milestones of social referencing, joint attention, and emotional attunement develop. The child learns how to use the parent as a guide to shape his emotional responses to stimuli – both the types of response and the magnitude of the response. The child also learns to use the parent as a guide to control his emotional responses. He learns how to mitigate outbursts, control his temper, and use socially acceptable means of expressing anger. The process happens gradually, over a period of years. By about age 5, the typical child has a good amount of emotional self-control, thanks to the regulating influence of his parents, whom he learned to use early on to guide him in this process.

In situations of autism, in which the child is not predisposed toward favoring social feedback, such as facial communication, the child is not as readily available emotionally to receive parent's social bids. The child does not provide parents with a reliable feedback mechanism to promote continued social exchanges. The ASD child, instead, will often avoid social exchanges, even with parents. His failure to develop this fluid reciprocal social-emotional feedback loop with parents has profound and debiliating effects on his future social and emotional competence. His long-term quality of life is dramatically compromised through the failure of the development of this early parent-child identification relationship. Parents are left unsure of how to communicate and interact with their child in ways that will build his trust in interacting with and learning from others. Often there is a sense of failure and hopelessness.

Autism involves challenges in communication as well as with emotional regulation. The communication challenges are especially pronounced with nonverbal or preverbal children. However, even children with significant communication challenges can improve their emotional regulation and reduce aggressive tendencies through the RDI® program and similar programs that target building the trusting and guiding relationship between parents and child. In the RDI® program, parents are systematically trained in how to interact and communicate with their child, even if their child is nonverbal, in ways that build the GPR, reduce the child’s and parents’ general stress level, and improve the family’s overall quality of life. Often when parents change their own communication style with their child and change their expectations of how the child should respond, there is a positive affect on aggression and emotional regulation. In addition, the RDI® program contains developmental child objectives related to emotional regulation and self-control. The consultant assigns these objectives sequentially for the parents to work on in their lifestyle with their child. In the RDI® Program, parents are also guided in how to be better parents to all their children, ASD or typical.

Parents who have aggressive ASD children would do well to investigate the RDI® Program or a similar program focused on building trusting parent-child relationships. The cost of the program is low, compared with common intensive therapist-delivered programs; the empowerment and peace of mind parents could gain is priceless.

In my family, we have largely overcome the aggression issue. I am no longer my son’s whipping post. I have a child who has developed empathy, kindness, and an interest in what others are thinking. The progress has been gradual over a period of years, and things are not yet perfect, but people who meet my son are impressed with how courteous and well-regulated he is.

There are currently about 250 certified RDI® consultants worldwide who can help you get started in reclaiming your relationship with your ASD child. See www.rdiconnect.com for more information on the RDI® Program.

Friday, August 20, 2010

Your Nonverbal Child with Autism: Rethinking Priorities

Are you the parent of a nonverbal or preverbal child with autism?

If you are, your all-consuming goal might be to get your child to speak. You might think, “If she could only talk. Then our lives would be so much easier. She would be so much less frustrated. She would want to communicate with us. She would be able to control her behaviors because she could express herself. She would really develop socially. If we could only get her to talk, everything else would take care of itself.”

You may have your child in a school program centered on developing her ability to talk. You and the school may work for years so that you can hear even a few words emerge from that precious mouth. And now, finally, you have a child who has a little language. Fantastic, you think! She is speaking! It doesn’t much matter to you that she needs to be prompted to speak most of the time, or that most of what comes out of her mouth is repeating parts of movies. She can talk. The rest will come.
Or maybe the language has not developed…yet. But you are determined to keep trying until it comes. Because you believe that there is no success in autism treatment without developing speech.

Let’s think a minute about our focus, parents. Let’s first distinguish speech from communication. I often think of something Dr. Gutstein shared with us during consultant training. Dr. Gutstein said that parents who come to him often give as their number one goal for their ASD child “Getting him to talk.” Dr. Gutstein then says something like “Wait a minute. Do you mean talk or do you mean communicate? What if your child had plenty of language but only used it for scripting from video tapes, making his immediate needs met, or when he was prompted to imitate. You feel that this child really is indifferent about you most of the time, preferring objects over relationships. You note that he is extremely rigid and lacks resilience. You don’t have the trust, the emotional closeness with him that you know parents have with typical children.”

Parents almost always say that this is not the happy ending that they would envision for their child with language.

Dr. Gutstein continues: “On the other hand, what if the child has no language at all, but is motivated and competent to communicate with you continually in a variety of ways – with his face, gestures, body, in writing – and he communicates not only to make his needs known and met, but he also loves to share his thoughts and experiences with you and is excited to experience your ideas and feelings. You and this child who can’t talk have a great, close relationship. This child trusts you and looks to you regularly for guidance. This child is physically, emotionally and behaviorally regulated. What would you think then?”

When posed with this hypothetical situation, parents invariably say “That would be better!”

Did you know that, for persons without mental retardation, adult outcomes for verbal persons with autism are not significantly better than for nonverbal persons with autism? It is clear from outcome data that achieving spoken language is not "the answer" to achieving a successful outcome in adulthood - defined as living an independent life, being gainfully employed and financially self-sufficient, and having close relationships.

Even if your nonverbal child never develops spoken language - about 10-20% of persons with autism fall into this category, according to recent research – much can, and should be done to develop your child’s competence as a communicator. And by “communicator,” I don’t mean just a “needs met” communicator who is able to use signs or PECS cards to indicate that he is hungry, thirsty, needs to use the toilet, etc. I mean a true social communicator – a communicator who is interested in sharing his ideas and perspectives with others and is likewise interested in their ideas and perspectives. A person who values people over things.
Here are some steps to get parents started in developing these competencies in their nonverbal children.

1. Use less language with your child! Yes, you heard right. Less language. Seems counterintuitive, right? Shouldn’t you expose the child to as much language as possible to help him build HIS language? Not necessarily.

Parents who are anxious to get language out of their child often drastically over-talk and over-prompt. Over-talking; that is, using too many words and speaking at too fast a pace, puts great stress on the child’s processing capacity. The child is overloaded and tends to shut down or tune out. Moreover, the child often can sense the stress in the communication dynamic from the parents, and assimilates that stressful state, therefore preventing effective learning.

Make sure your language is brief – a few words at a time – and that you give your child plenty of time to process each thought.

Example:

Don’t say: “Jamie, put on your shoes because we need to go to a lot of places today. First we are going to grandma’s, the one with the horse, then to the store, and then we are going to your friend Jessica’s house. Remember Jessica? You went to her house last year. She has a pool.”

Do say: Let’s put on your shoes; we’re going somewhere.
(This may encourage her to say or sign “Where?” Then you could say with a smile “Someone who bakes you cookies and has a horse!” Which might encourage her to say or sign “Grandma?” Then you could nod with a grin, and she may say or sign “Yea!” (or maybe “Boo” or whatever! ).
Less language from you equals greater encouragement for a true conversation!

2. Stop asking your child questions! A regular barrage of questions fired at your child is a pretty effective way to make him shut down. Consider how you would feel if you were subjected to being quizzed all day, every day of your life. Think “constant, high-pressure interview.”

Why do parents ask their kids with autism so many questions? We do it because we are desperate to test their knowledge, to reassure ourselves that they are “learning something,” that we are succeeding in teaching them. We do it because we are desperate to have “some” type of interaction with our child, and quizzing seems to be the only way we can do this.

Questions should be replaced by comments. Or, better yet, with expectant silence as you wait for the child to take action and show his own competence.

Example:

Don’t say: Do you want some chips?
Do say: Nothing. Wait for the child to ask you for chips. If he is not hungry he won’t ask. If he is hungry and grabs them from you, don’t let him! Take them back and have him ask. Never allow grabbing.

Don’t say (when child is crying): “What’s wrong?” Most likely he is not able to communicate what is wrong and your direct question just places additional stress on him.
Do say: “You’re crying. You’re upset. I’ll try to help you feel better.”

Don’t say “Do you want to put your shoes on?” if you want him to put his shoes on. He may say or sign “No” and then what do you do?

Do say “Time to put your shoes on,” “Let’s put your shoes on,” etc.

3. Use your face and your child’s face as the primary mode of communication.
Typical babies learn to be proficient communicators through their faces and the faces of others by the time they are 12-18 months old. This happens before spoken language develops. Competence in facial communication is a critical developmental prerequisite to spoken language. This is the time that babies learn how to share experiences with others, the basis for social communication. Persons with autism who learn to speak but lack the nonverbal foundational skills will not become proficient at social or experience sharing communication. They will be relegated to a life of instrumental or “needs met” communication. Babies who have not yet developed language are amazingly fluent and proficient communicators, not only to make their needs met, but for social, sharing purposes also.

Think about ways to substitute facial communication for the verbal communication you would normally use. Start small, like using a head nod or shake rather than a yes or no. Look into your child’s eyes and smile often. Think about all the facial expressions you can use to convey to your child the feelings inside you. It is said that the eyes are the pathway to the soul. There is no better way to develop an emotional connection with your child than to develop a strong foundation in facial communication.

4. Share your own thoughts, feelings, ideas and perspectives often with your child. Get in the habit of “thinking aloud” and purposefully sharing those thoughts with your child. Your child will feel respected and included in your life. There should be no quid pro quo involved – you should not require anything of your child other than his attention to what you are communicating. This means you are NOT looking for a response or a behavior. Silence is fine as long as you sense he is attending or listening. You will need to be mindful of the pace of your communication to ensure that you are not overloading his processing capacity.
Examples:

What a beautiful sunset. (Pause, smile). I’m so glad you’re watching it with me. (Pause, smile.)
OOO, this traffic! I’m so frustrated!
Hmm, I wonder what I’ll cook for dinner tonight. (Pause). I know, chicken. (Pause). I know everyone likes that.

If you consistently adopt the above strategies, your child will be more motivated to communicate with you, and you likely will enjoy communicating with your child more. And you may start to see more language as a bonus, even though that is not the goal!
Enjoy the experience with your precious child. Your relationship is more important than words!

Tuesday, August 17, 2010

Limit setting with ASD: Finding the Right Balance

Persons with autism have as a core deficit a limited capacity for what we call “dynamic thinking” – that is, processing and adapting to situations involving change or uncertainty. Many of my discussions with parents concern how to challenge their child to new, more flexible ways of thinking – remediating this core deficit of autism. Keeping in mind the child’s tendencies toward rigid thinking, rapid emotional dysregulation when challenged, and limited resilience, parents must balance challenge with appropriate compensations in order to arrive at the “right” level of challenge to remediate the primary deficit. In RDI® lingo we call this “right” level “productive uncertainty.”

Persons not familiar with RDI® sometimes have a perception that remediation through the RDI® program must involve specific “RDI® activities.” This is not the case. Perhaps surprisingly, the most ordinary of situations from everyday life with the child can be transformed into dynamic thinking opportunities with a bit of mindful parenting.

Imagine this scenario, for example:

You are in McDonald’s with your ten-year child with autism. Every time he goes to McDonald’s he always wants the same thing, a cheeseburger Happy Meal with a PLAIN cheeseburger and chocolate milk. He is obsessed with Plain Cheeseburger Happy Meals. He would eat them 24-7 if he could.

(How many of you have such a child, or a child with a similar obsession?)

Since you believe in picking your battles, when you happen to be at Mickey D’s, you usually let him get what he wants. You also are keenly aware that he does not like to be babied and wants to do as much as possible, independently, without your help. He has made this known to you in no uncertain terms.

“OK, you can tell her what you want,” you say.

He asks for a cheeseburger Happy Meal with chocolate milk. He did a fine job ordering, you think. The food comes, you both sit at a table, and he immediately asks to play in the Play Place. You say, after you finish all your food. He says OK. So far, great, you think.

Then he opens the burger. Oops. It has ketchup. Onions. Pickles. And, horror of horrors, mustard.

He had forgotten to say “plain.”

“It’s not plain! I can’t eat this! I’m going to get another one!” He is visibly upset. He starts to head back toward the counter.

Decision point for you.

Many things flash through your mind in an instant: He is hurting. Struggling. This is too much variation for him. Too unexpected. He can’t handle it. It hurts me to see him like this. What would a good parent do with a typical child who acted like this? What would a bad parent do with a typical child who acted like this? What would Dr. John Rosemond say? How much mental challenge is “enough” for him? How much is “too much?” Is “too much” permanently damaging? And why am I obsessing over making a decision about a lousy cheeseburger? Who cares, anyway? It’s only a buck! Is giving in this one time going to make a difference in the long run?

In an instant, with less-than-perfect information and a lot of faith, you make your decision.

“No. You are not.” You say it slowly, calmly, firmly.

Your child stops in his tracks. He looks at you, incredulous. He can’t believe what he has heard.

“Why not?”

“It’s what you ordered. It’s paid for. I am not paying for another burger.”

“But it has onions. And pickles!”

Another decision point. This time you decide to accommodate – OK, compensate - a bit. You take the burger, scrape off the onions and pickle and give it back to him.

“Now it doesn’t.”

Doubtfully, he looks at you. He looks at the burger. He hesitates. He thinks. He takes a bite. He takes another. And another. Soon about half the burger is gone. Success, you think.

Then he hits the mustard.

“Ewww! Mustard! I’m gagging!” He actually gags.

Another decision point for you. Has he had enough?

You decide. You take the roll. You attempt to scrape off the mustard. You almost succeed. You hand him back the burger. “Here you go. Mustard gone.”

“No it’s not! It’s still there!”

Decision point. You weaken a bit. Another compensation. You pull the mustardy roll part off. You give him back the burger with the bit of roll remaining that is mustard-free.

“Now the mustard IS all gone.”

“I’m still not eating it. I can see where the onions were!”

Decision point.

“Well, that’s your decision. I guess we’ll go, then.”

“No! I want to go on the Play Scape!”

“But we had a deal, remember?”

“But my burger is not right!!!”

“Well, I’m sorry about that. Sometimes in life you have to accept things that are not quite right. You have to adapt.”

“OOOOO!!!!! YOU ARE MAKING ME SO MAD!!! HOW DARE YOU!!!! Etc. etc. angry tirade.

“OK, so let’s go then. I expect you to control yourself here in the restaurant. I know that you can.”

Out you walk with a child on the verge of a tantrum.

In the car he unleashes a choice stream of threats at you, including promising to give you a time out, having a squirrel bite you, have the police come take you to jail (but only for 20 minutes) and other creative punishments for your audacity and horrible parenting.

“Hmmm.” You say. “I think this must be what happens to you in school when you feel like you are forced to be too flexible. You feel like you need to punish everyone. Now I understand.”

He stops. “Yes.” He says. “This is what happens.”

“Well, let’s think about what you did just now. You ate most of your burger that was not the way you expected. You did it OK. And you didn’t have a tantrum. That was great!”

“But I didn’t like it! It was really hard!”

“Yes it was. But you did it. And next time it will be easier.”

You drive in silence for a while. In time, his anger diffuses. He starts talking about different things. It’s over.

Later that evening, you decide to approach the subject again. You want to drive your point home. Spotlight his success.

“So, are we friends?”

“Huh?” He has forgotton the tiff already!

“After you being so mad at me about the cheeseburger. Are we friends again?”

(Slight whiney tone) Yeah, I guess so….but I really didn’t like that!

“Do you know why I didn’t let you get a new burger?”

“Because you wanted to save money?”

“Well, yes, but there was a more important reason.”

“To help me be more flexible?”

“Right.”

Silence.

"And you were. You did it."

That, my fellow parents, is a little slice of life from our RDI® lifestyle.

Thursday, May 6, 2010

Autism Remediation: Moving Beyond “Socially Meaningful” Behaviors

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.

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.

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.

video

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.

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.

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!

Tuesday, February 2, 2010

Welcome to my blog!

I have been thinking about blogging for a long time, and now I have finally gone and taken the plunge! I don't consider myself a great writer, but I feel that I have a lot to offer parents and caregivers struggling with the challenges of autism. From my experiences as a parent of a child with autism - both the successes and the failures along the way - and also from my experiences working with many wonderful families affected by autism, I hope to help readers realize the same special and wonderful relationship with their child as I now have with my child with autism. I hope that this blog provides insights to help parents become "mindful" in their interactions with their child. I hope in reading my entries that parents will begin to think about themselves and their child's abilities and challenges in new ways. And I hope by sharing my story, both as a parent and as a guide to other parents, that I will help to spread awareness and appreciation of the amazing program of autism remediation that has changed my son's life and the life of our family, Relationship Development Intervention - RDI(R).

I look forward to sharing my journey with all of you!