Messages posted by: imsnooper

It is absolutely possible to teach a child with autism joint attention. I taught my son. I never used a formal behavioral program. Using my "mom's instinct" I began with a game which we called "the poking game." All my kids (I have two older NT kids) loved this game. Basically, you try to poke the other person and at the same time avoid being poked. If you get in a poke on the other person without them poking you, you score! This was one of the ways I helped my son learn basic emotional engagement. Later, as he got the hang and was enjoying the game, I taught him how to "distract me" so he could get in a poke. I first distracted him: "Look at the light!" I would point to the light on the other side of the room and look at it. I would wait until he followed my point. And then I would poke him! And I would say, OOh, I tricked you! I poked you when you were looking at the light!" Then I taught him how to distract ME by saying to me "Look at the light." I would not look unless he was gazing at it and pointing to it first. I challenged him by not looking immediately, he had to look back at me FIRST to see if I was looking. This is true joint attention - eye gaze between your face and the common referrent, the light. As soon as all this happened, I looked at the light. Then I scaffolded for him to poke me - OOH, I'm looking at the light, I'm not paying attention to you, etc." When he poked me, I did NOT tell him "good job getting me to look at the light." What I did say was "You rascal! You tricked me! You scored!" Therefore he was reinforced not by pleasing me, but by his own feelings of competence.

This was just the beginning. I worked long and hard with my son in this area and his other core deficit areas, at first by the seat of my pants, and then using Relationship Development Intervention, which has been a godsend.

Oh yes, in addition to teaching joint attention, one can also teach children with autism empathy, theory of mind, flexible thinking, and social and emotional regulation and co-regulation. These are the areas that interventions should focus on, not teaching of discrete skills.

Applied Behavior Analysis seems to be receiving the most positive press of any autism treatment. There is a wealth of research demonstrating that ABA is an effective method of teaching skills and appropriate behaviors while reducing inappropriate behaviors in persons with autism. Parents and ABA providers are organizing and lobbying state and federal government for insurance reform to provide coverage for this expensive intervention. News stories about ABA treatment for autism appear almost daily.

Since there is such a strong outcry in support of ABA, I would like to hear about actual families' experiences with ABA programs. What types of positive changes have you seen in your child? What areas of challenge does you child still have? After several years of intensive ABA, do you feel that your child is on the path to an independent, financially self-sufficient adulthood with meaningful social relationships? Have you revised your long term vision for your child in a more positive manner after the intervention?

Or do you still believe your child will need support in adulthood, despite the intensive, early intervention? If you feel that your ABA program was lacking in any areas, what are those areas? Have you adjusted your long-term expectations for your child downward after not having achieved the outcomes you had hoped for thus far? How has your future vision for your child changed?

My hypothesis, a feeling shared by some researchers, is that ABA is falling short in providing the great majority of children with autism meaningful long-term quality of life outcomes. If so, then we must seriously evaluate the state of autism interventions and begin to promote a "better mousetrap," so to speak. Perhaps the "behavioral" paradigm is not the best way to approach this disorder.

Thanks for the information, RAJ. It appears as though the boundaries between the various levels of "severity" are not clearly defined. The implications for this type of definition are troubling when considering the problem of interventions in this world of scarce resources. Should someone who is rated "severly autistic" automatically be provided more intensive intervention than someone who is rated as less severe, on the assumption that the more severe person has a more ground to cover in "catching up"? Or perhaps decision makers will take the opposite point of view - that the most severely affected people are "lost causes", and the resources should be expended on the less severely affected individuals, on the theory that they are more likely to "make it." And what about educational programs? Will school systems now want to provide intensive programs only to certain severity categories? Surely they will not want to provide services for the bottom category, the "introverted personality" subtype. Yet this subtype legally falls under the ASD category which is protected under IDEA.

Many intriguing questions...

Yes, sorry, Connie, I should have explained more about RDI. There are at least two independent studies underway, one at the University of Sydney and one at the Tavistock Institute in London. Because they are longitudinal and look at long-term outcomes, rather than more short term behavior or skill changes, they obviously take time.

I also did not mention that, since the program worked so well for my son, I went through the certication process myself and am now an RDI Program Certified Consultant. In the RDI program, all consultants are required to keep all the data on our families in a secure on-line system. Progress on all the thousands of families we are working with is tracked and recorded. Videotapes of child progress are all uploaded into the system under the appropriate objective as documentation. So all of us 200+ consultants around the world have documentation of each child's progress in mastery of developmentally sequenced objectives. These objectives, over one thousand of them, are based on typical child development of dynamic intelligence between the ages of 0 and 14 years old. You can think of the objective system essentially as "building a mind, step by step."

For those who are not aware, before we tackle the child objectives, we train and coach the parents through a series of "parent objectives." These parent objectives are staged, and cover theory, readiness for remediation (issues such as family stress, limit setting, short and long term goals for the child, moving past the state of autism-related crisis, examining possible conflicting interventions, time and schedule management, and other areas), and, most importantly, how to be a guide for your child in dynamic intelligence, covering areas of communication style, framing, proper scaffolding, creating the right amount of challenge to foster dynamic learning (known as "productive uncertainty" or Vygotsky's "Zone of proximal development").

People often ask me about the similarities between Floortime/DIR and RDI. To answer, one can think of a continuum of teaching styles, with ABA on one end and Floortime/DIR on the other end. The ABA teaching style generally can be described as directive teacher, passive learner, in that the teacher provides a directive, and the learner must respond to that directive with a particular behavior. The teacher looks for compliance, or "instructional control." On the other end of the continuum is Floortime/DIR, which is a child-led model. The teacher or parent follows the child's lead and tries to enter his world.

RDI can be thought of as in the middle of the continuum. The teaching style used is "guided participation," writtenn about extensively by Barbara Rogoff ("Apprenticeship in Thinking") and others. This teaching style is used because it is the style that parents use to parent typical children, and have for thousands of years in all cultures throughout the world. Guided participation involves a guide (initially the parent) and an apprentice (the child). The guide provides the apprentice increasingly complex cognitive challenge as he participates alongside the guide in "culturally meaningful" activities. Parents who guide typical children instinctively know what this optimal level of challenge is. Parents of ASD children, because of the lack of meaningful feedback from the child, have difficulty with challenging the child at the right level. The "apprentice" is an active learner who trusts the guide to help him resolve the uncertainties he is confronted with. The central mission of RDI is to build between the parent and the child this critical, central guide/apprentice relationship between the parent and the child. Once this relationship is formed and solidified, the child is in the position to be an active learner, who is motivated and competent to use others as reference points for further learning.

RDI is all about shaping the mind to handle the challenges and complexities of the real world, in the long term. Hence we talk about long-term quality of life perhaps more than any other intervention. It is troubling to me that everyone seems to be "riding the ABA wave" lately. ABA, despite all the research showing effectiveness at building skills and controlling behaviors, still comes up short when one examines the research on long-term quality of life outcomes. At best, it appears 15-20% of those with early intensive behavioral therapy will achieve "best outcomes" (Dr. Deborah Fein's latest study). To me, these are not good odds! I am concerned that many parents will assume that lots of hours of expensive ABA will "fix" their child and will be crushed when it does not happen. In my RDI practice, I have seen such parents.

As a sidebar, I was looking over the hundreds of abstracts from the recent IMFAR meeting. I noticed one researcher had noted that there are no interventions to his knowledge that address flexible thinking, a core deficit area in autism. So he and his people at I believe UCLA were going to come up with one. His current research was polling teachers and students about how serious an issue they thought this was and what they thought should be done about it. I smiled to myself as I thought "someone should tell these folks about RDI. Flexible thinking is what it's all about! No need to re-invent the wheel. The intervention is already here."

One last note: Dr. Gutstein is relying heavily on the underconnectivity theory of austism introduced by Nancy Minshew of University of Pittsburg and Marcel Just and team of Carnegie Mellon. I have been following their most recent research and it appears that this theory is gaining credibility among the general research community. I always play devil's advocate, trying my best to poke holes in the theory and practices behind RDI and the concept of core deficit remediation. But as research continues to emerge, Dr. Gutstein's theories continue to be corroborated and strengthened.

Well, now aren't you sorry that you started me on this thread?

Laura

We had much better luck with RDI than we did with ABA, regarding social competence (note that I say "competence" rather than "skills" - they are not the same). With his school-based, 30 hour per week ABA program, my son learned academic skills, gained language, and learned some social "rules" (a.k.a. skills). He did not develop joint attention, the desire or ability to share experiences with others or receive their shared experiences, socially "co-regulate," take another's perspective, problem solve flexibly, have a conversation, communicate nonverbally and in a "broadband" way (integrating different channels of communication - language eye gaze, gestures, etc.) and regulate socially and emotionally. He has gained competence in all these areas through our RDI program. The ABA program actually made him more rigid. Whoever said that ABA builds "new pathways" in the brain was misguided, at least in the case of our son. Based on his increasing problem behaviors while involved with the ABA program, the ABA actually exacerbated the lack of interconnectivity and lack of flexible communication among brain centers. So, yes, there were new pathways, I'm sure, but they were just more of the same - "bad" pathways. Perhaps his ABA program was not a "good ABA program" as some might claim. However, our town's public school autism program is considered the "gold standard" in our state. Now, after 4 years of RDI, people can't believe he has an autism diagnosis. We no longer have the rigid behaviors, horrible tantrums, aggression, self-injury, etc. we used to have during the ABA era. If anyone wants to contact me off list with any questions about our experience, my e-mail is lbdeang@yahoo.com