Be Careful What You Wish For…Appreciating both the good and the not-so-good that come with autism remediation and puberty

Mom talking to her teenager: So, honey, what’s going on in your life? I never hear about it lately. Teen: Not much. Mom: Well, what classes do you like at school? Teen: The same ones I liked before. Mom: OK…How about your friends? Who are you hanging out with? Teen: Different people. It’s no big deal mom! And so it goes… The onset of puberty is a challenging time for any parent, let alone a parent of a child with autism. The physical changes seem to happen so quickly that we scarcely can keep our kids in clothes and shoes that fit them. Personal hygiene reaches epic importance as little bodies morph into breeding grounds for gnarly odors and skin eruptions. Emotionally, our pubescent kids seem to actually regress at times. The moodiness, the stubbornness, the “attitude,” the eye rolls, even preteen temper tantrums – sometimes we feel like we are dealing with the terrible twos again. What about a child with autism? Because of the child’s neurological makeup, parents can find all these emotional changes magnified tenfold. The period of puberty, then presents unique challenges and opportunities for parental guiding of an ASD child. It is so important, then, to have built a strong relationship base with your ASD child before he reaches the preteen and teen years. As your child is moving through early and middle childhood, the development of a parent-child relationship that is respectful, fosters open communication without forcing it, and encourages the child’s feelings of competence is a wonderful gift you can give both of you. I have been an RDI parent for over seven years now. When Matt was young, I thought a lot about what his preteen and teen years would be like. Would he have friends? Be conversational? Be able to communicate nonverbally like his peers? Feel the normal urge to prefer peers to parents and keep some things private between him and his friends? Over those last seven years, I have seen my son go from a rigid child who had poor self-awareness, spoke mostly in scripts, could not carry on a conversation, had poor “eye contact” and emotional relatedness, to a conversational, talented, warm and engaging young man who thinks often about his future and is able to reflect on his strengths and weaknesses and set goals for himself. Some of the positive changes probably are due to what the scientists call “maturation,” but some of the changes are absolutely due to specific guiding I provided to my son over the years. That guiding focused on me learning how to create frequent opportunities in the course of our everyday lives for my son to be challenged to the “next level;” a learning environment tailored to remediating the core deficits of autism, while enhancing our relationship in the process. Having two older (neuro-typical) children, I already have experienced the turmoil of puberty. With my girls, I viewed the eye rolls, the disrespecting, the need for independence, with frustration. Now that my son is displaying some of those same behaviors…although I reprimand him, I secretly rejoice. Parents of typical kids take for granted the rich repertoire of behaviors, good and bad, that typifies normal preteen and teen development. Parents of children with autism, on the other hand, often appreciate those annoying behaviors that signal normal steps in emotional maturation. Allow me to share a few recent “colorful” examples I’ve witnessed with my son: Example 1: Matt: (Late for field trip) Hurry UP making my sandwich, mom! Me: Hey, don’t give me that attitude! You’re lucky I’m making it for you. Usually you have to make it yourself! (Meanwhile I think to myself: Wow, He has developed an attitude of urgency! Motivation!) Matt: (Gives me disrespecting glance) Me: Whoa! Hold on! Don’t you ever give me that disrespecting look again! You apologize to me or you are not going on that field trip! (Meanwhile I think to myself: Whoa! What perfect age-appropriate facial communication!) Example 2: Matt, to a friend who is over to play: And did you hear what he said??! Me: (Thinking to myself, wow this is a great conversation they are having but he didn’t clarify who he is talking about; maybe I’d better help out.) Hear what WHO said, Matt? Matt: (Giving me an eye-roll look) It’s none of your concern, Mom! *Be careful what you wish for, parents. You might just get it!*

New Summary of the RDI Program

Dr. Gutstein has unveiled a brand new version of the RDI program for autism remediation. It contains a new on-line "platform" and a new "objective" system for both parents and students. We are all very excited about what promises to be an even better program than before! Below is a brief introduction he wrote explaining the basics of the RDI family consultation program. If you would like more information about RDI, contact me (at lbdeang@yahoo.com or on Facebook at Laura Barbuto DeAngelo) or one of the hundreds of other certified consultants worldwide. See the website www.rdiconnect.com for a list of certified consultants.


Introduction to the Family Consultation Program


The first step

The Family Consultation Program is for many families, the first step towards developing their child's ability to function as a mindful decision maker. FCP is a clinical program, specifically designed for those families where powerful obstacles have disrupted the formation of a natural mental guiding process. Parents work with trained RDI Family Consultants. The focus is on constructing essential foundations for mental development by harnessing the immense potential of the family.

Program Premises

Foundations of the adult mind are developed in the first years of life through the "Guiding Relationship". From the middle of the first year of life, hour-by-hour, day-by-day, in every culture on earth, children interact with parents and other important adults in deceptively simple encounters, with a very serious underlying agenda; constructing the architecture of the child’s mind and brain.

Some children are born with vulnerabilities that in early development serve as a “tipping point,” preventing them from developing foundations needed to participate in and benefit from the Guiding Relationship. The congenital problems of these children disrupt early parent-child communication, preventing even the most competent parent from providing the thousands of hours of safe, productive guidance needed to foster their child's dynamic development.

The Family Consultation Program seeks to provide a second opportunity for parents and children to develop this essential relationship. We have distilled the typically intuitive process into its central elements. Dr. Gutstein has spent over twenty years studying the intuitive guiding process as it is conducted over the entire world. He has systematically "de-constructed" the process - breaking it apart into its central components, so that any parent can learn to be an effective guide. He has developed a variety of methods to create optimal practice and learning environments that slow and amplify information so that children can experience trust in their guides and in themselves.


The Process

The program involves both parents and child learning new ways of thinking and perceiving in a carefully guided and personalized program. An individual plan is developed, focusing on first reducing those bio psycho social obstacles preventing apprenticeship from developing and then providing the tools needed for successful parent-child guiding engagements to occur.

Consultants train parents to provide a safe, but constantly varying framework. Children learn to use parents as a safe reference point for engaging with and mastering new mental challenges. Children learn to "upgrade" their personal understanding and competence through observing, sharing and comparing with the more expert mind of the parent. Parents learn to construct personalized modifications and remove obstacles, to provide an optimal learning environment.

Parents learn to add small pieces of uncertainty to predictable frameworks. Challenge is paired with success through self regulation balanced by just enough parental support. Parents make sure to capture critical episodes as "experience memories" and build a repository of similar memories in gradually more complex environments.


Conclusion

Until the RDI Family Consultation Program was initiated in 2001, the disruption, or failure of the natural Guiding Relationship meant that opportunities for dynamic mental and neural development were irrevocably lost. The program has provided a second chance for thousands of families worldwide to resume the critical functions that are the universal basis of family life and success in the 21st century world.

-Dr. Steven Gutstein

Pending Legislation in CT!

Dear Families,

I just learned last night that the public hearing for Senate Bill 974, An Act Concerning Health Insurance Coverage for Alternative Therapies for Autism, will be held tomorrow, Thursday, Feb. 24, 2011 at 1:00 p.m. in the Legislative Office Building in Hartford, CT, room 2C. This is a hearing before the Insurance and Real Estate Committee, which has agreed to raise the bill at the request of Linda Schofield. We are so grateful to Linda for her support.

As we received virtually no notice of the hearing, we are asking to have the hearing delayed; but according to Linda this doesn't seem likely. So for now assume that the hearing will go on as planned. Please scroll down this list to see the hearing information near the bottom on the right:

http://advocacy.ccm-ct.org/Resources.ashx?id=ab32f77f-7cb8-4956-8001-9b4a01c2c0c5

This is a bill that would provide insurance coverage for evidence-based developmental/relationship-based interventions such as RDI, DIR/floortime (Greenspan model) and the SCERTS model, among others. We believe that parents should have choices of covered interventions that fit their and their child's preferences and needs; the experts agree that, with autism therapy, one size does not fit all!

There will be a lot of interest in the topic of whether there is sufficient evidence basis for these various therapies; so if you have any helpful information along these lines, please feel free to share it in your testimony. Also, there will be a lot of interest in the cost-effectiveness of these therapies; so again, feel free to include information on that in your testimony.

If at all possible on this short notice, please attend the hearing if you can, and provide oral testimony (maximum of three minutes). You will need to supply written copies of your testimony also (35 copies). You will need to be there at 11:00 for the sign in.

If you cannot make the hearing, you may submit written testimony (no maximum length) by noon tomorrow. You may e-mail your testimony to the following individual, who will make the necessary copies for you and get your testimony to the committee for the hearing.

Robert Labanara rlabanara@ccm-ct.org

Please include the following information with your testimony:

Your name and contact information - address, phone, e-mail
Number and title of the bill: Senate Bill 974, Health Insurance Coverage For Alternative Therapies For Autism: Mandate
Your position (e.g. I support SB 974)
(He did not mention date, but I think you should definitely put the date of submission).

There is no minimum or maximum length requirement although he advised to keep it on the short side since the committee has a lot of written testimony to go through. He suggested bullet points as a good format.

Please spread the word as quickly as possible to other parents and professionals who may want to attend the hearing and/or submit testimony.

Also, Kim Kiernan will be coordinating most of the communication regarding this bill going forward. If you do not want to be on Kim's e-mail list of contacts for this information, please e-mail her at k2.kiernan@gmail.com and reequest to be removed from the list.

Here is the current version of the bill, which is an expanded version of the current behavioral mandate:

http://www.cga.ct.gov/2011/TOB/S/2011SB-00974-R00-SB.htm

Please help us in this effort! It is so important for our children and families to have affordable choices in autism therapy.

Laura

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.

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!

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.

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.