Saturday, January 22, 2011

The Dawn of thinking (ASD and Theory of mind)

Chapter 3 The Cradle of thought

What can RDI do for your Family/Child?

In reading chapter 3, a question was in the forefront. Ok, so we know that children on the spectrum lack Theory of mind. From my 11 years of experience with Autism, both as a parent and a professional, this is undisputed. But before I continue with the question of what RDI does for the child on the spectrum, we need to think about what our own determination of theory of mind is. Do we believe that our children on the spectrum can have that intersubjectivity within their relationships? Do we think this knowledge is crucial when determining what intervention best fits our beliefs? In exploring this belief we determine the direction in which you choose to help your child with Autism. Questions like, how does this help my child with perspective, or how will my child understand inferences compared to black and white thinking?

I wanted to mention here, the complexity of the lack of *sharing another’s state of mind* is evident in both infantile Autism and regressive Autism. This is a core deficit of both forms with different triggers. In many children on the spectrum, regardless of either Diagnoses, a co occurring condition of sensory integration, or inflammation of the gastrointestinal track must also be simultaneously addressed alongside theory of mind. Bio medical treatment and/or brain integration help heal the assault on the brain, but the core deficits must always be addressed in addition to getting the child’s immune system working properly.

This Chapter, and woven throughout the remaining chapters of the book, explains what RDI can do for a child on the spectrum…through the lens of intersubjectivity which leads to theory of mind.

Looking at the *dawn* of thinking...and the definition of primary intersubjectivity .

Primary- Actions and emotional state of a baby up to 9 months old

Inter- Something happening between two people

Subjectivity- Your unique appraisal, thoughts, perceptions, feelings memories and dreams

For a baby about 3-9 months of age, Intersubjectivity is about *us* Think of the games we play with them , peekaboo, etc. Very Simple actions that are centered around both people involved. On the foundational level, 9 month old’s are able to accept the initiation of peekaboo, manage their attention, respond to both attention and lack of attention. These actions are referred to as being able to emotionally regulate with the other person.

In the coming chapters of The Cradle of thought, we will go through all the stages of intersubjectivity. Since the foundational milestones in RDI are based in the ability to share with another’s mind ( being conscience of another’s conscienceness), most children who start RDI start here regardless of the therapies they may have received in the past. This is where families learn about the Guide Apprentice role that we intuitively do with typical children ( we are their guide, and they are our Apprentice to the world as we teach them). With the Diagnoses of Autism, we fall into the role of following them around and reversing what is done with typical children. I should mention here to reach into a child’s world with Autism, we do not have to give up the role of Guide. As we guide our children to regulate with our actions and roles, this forms the ability for joint attention which is crucial to a child as young as 3 months. Think of Peek A boo…without the child being able to share joint attention with the Mother/Father, you can visualize how that would affect the emotional connection. This primary stage is huge as these functions in development lay the groundwork for all future understanding of how we, in our relationships, depend on collaboration and shared perceptions .

Secondary Inter Subjectivity begins from 9 months - 15 months….which I will save for Chapter four “The Cast of thought”.

So let’s take a look at the very basic primary stage that a typical 9 month old has mastered . A few of the mastered milestones of this stage is –

Managing attention

Acceptance of initiation/invitation

Response to initiation failures

Response to initiation successes

Coordination of emotional tone (happy, sad, etc)

Coordination of emotional intensity (a little excited or very excited)

Balance of communication (verbal, non-verbal, etc)

As you look at the mastered milestones, you’ll notice that these milestones are very necessary to have meaningful reciprocal relationships. It is incredible to me that a 7 month old has the foundational skills to begin to understand friendships and meaningful relationships because of their emerging theory of mind, knowing that social interaction are about *us*, Their thoughts begin to move out of instrumental * me* and into the next stage where they want to share experiences.

What I have found as both a parent of 4, 2 diagnosed on the spectrum, who had to help both move out of instrumental mode along with professionally seeing many children who were trained for many skills but their theory of mind was never addressed…is You cannot skip this crucial stage without consequences. Over and over social skills groups try to address the lack of social understanding with our children, and while their attempts are well meaning, their methodology is just another rote way to try and build upon a weak foundation because basic milestones have never been met. A parent will say to me, if only my child could get a friend!! Or they will let me know their biggest challenge is initiating friendships with their peers. Now look back at those primary milestones…This is where the function of learning about friendship begins.

Another common thread that I hear with parents is regression . Again, our children are just like any other child, and they need these basic milestones in place to have a strong build upon. Yes, it must be done in a more deliberate, precise way as they did not get the milestones the first time due to their own triggers that caused Autism. But in no way can they be skipped in hopes that they can be taught how to fake it with scripts, without having the intentionality of wanting to seek out relationships from their intruistic motivation.

What can RDI do for your child and family? The piece of mind knowing that you are affording your child a second chance at milestones that were missed the first time, protecting him against regression, and giving him/her the foundational skills to build meaningful friendships ( just as their peers learned it) as he progresses in his treatment for Autism.  These milestones are needed no matter where your child falls on  the spectrum ( debunking the *rumor* that RDI is just for Aspergers or HFA) as my own 2 children were PDD and Severe Infantile Autism.


Monday, January 17, 2011

Good Morning America, well …maybe not so good!

As I gave out a heavy sigh upon watching Good Morning America today, I decided to interrupt my regularly scheduled Blog ( I will post Chapter 3 on Wednesday!) because of George’s incredible rudeness on national television. I mean I get that he does now agree with Andrew Wakefield ( or he was told not to agree, whichever the case may be)…but I felt like I needed to give him a scolding for being so rude ( after all I do teach my children it is rude to continuously interrupt someone when they are soeaking)
So here are some of my musings of the current events these past few weeks!! Last week was Anderson Cooper, this week, Good Morning America ( and its only Monday!). Of course in between were countless interviews with Doctors, parents, reporters, etc…on both sides of the issue. And that issue is- Do Vaccines cause Autism?
Andrew Wakefield could not have been clearer, along with most people who spoke on the subject from both sides of the issue. The answer is, we don’t know. Even Doctors who claim that there is no connection admit the problem is, we simply don’t know what causes Autism! To me, well, if we don’t know, we cannot rule out anything without intense, non biased studies ( the studies where people are truly looking for the answer and not trying to disprove the other side) Intent is a huge factor within research and can have a huge impact on what is*FOUND* in research! We need studies that are not funded by the interest of the stakeholder!
Controversy always gets me thinking…and I tend to go back to History. I know that one of the quotes in the RDI book is from William James- “First, you know a theory is attacked; then it is admitted to be true, but obvious and insignificant; Finally it is seen to be so important that its adversaries claim that they themselves discovered it”
My own children who were diagnosed with Autism are now just about 14 and 10. I have been around long enough to see the tides turn within all kinds of opinions.
So since this is my blog, I wanted to share some of how I got to where I tend to take my mind when people are talking about something *new* something out of mainstream, and/or something controversial. I will try and keep this as short as possible, so if I miss something it is not because I did not want to talk about it.   I am also in the unique position because I have two children diagnosed on the spectrum, One who was Diagnosed with Regressive Autism, and the other with Infantile Autism. Yes, there is a difference. And I also have two Neuro typical children. This is important because Autism is not triggered by one isolated incident but rather a perfect storm of genetics and/or environmental triggers. I am no doctor but I would think that being able to assess a child’s immune system, along with family history of allergies, etc could go an incredibly long way in making progress with pinpointing how to head off that trigger for each child who would be susceptible to regressive Autism. At the least it would be much more productive then trying to dismiss that Autism and Gastro immune issues co- exist in 70 percent of children with Autism as irrelevant. Remember the quote in the beginning of the blog. Keep in mind that there are doctors on both sides of the issues. A look at history tells us that Mainstream medicine focuses on understanding problems from the perspective of the stakeholders involved and then applying information and other technologies as needed. This serves us well in some cases, and in other cases it is a hindrance to, well…truth. It does this because the stakeholders have A LOT to lose
Since we are talking about Autism, I am going to use the my experience with two interventions the same way I look at what is currently in the news with Andrew Wakefield. I do this because as a parent, I needed to be doing something for my kids. Don’t get me wrong, effective research is vital in understanding Autism, but equally important is understanding effective long term treatment for our kids. After all, they are all going to grow up to be adults so this effects our entire society, not just those of us who have children on the spectrum.
Starting with Behaviorism we know that Dr Lovaas started his work in the early 1960’s. In 1965 there was a published article in LIFE regarding his * new treatment*

My purpose is not to discuss this article in detail, but to merely continue to show the progression of research. Of course one might note that this article had to have drawn some criticism! One group maybe criticizing for not putting these children away and another group criticizing the methodology. Some parents saying how could the *other * parents let this be done to their children, while those parents were grateful that through behaviorism their child’s needs and wants could be voiced.
Backing up to see Dr Lovaas influences, In 1904 Pavlov won the Nobel prize for his work in conditioning. From the early 19th century and the early 20th Century behaviorism gained popularity among many philosophers. Dr Lovaas based some of his work on the studies of Ivan Pavlov and BF Skinner to apply conditioning/Behaviorism to help children with Autism. Before that period work was very limited for Autism/mentally handicapped children, even though behavioral techniques were being used in other fields for managing behaviors like addiction, etc. Let’s face it, after a long day we all reward ourself with a treat, etc. In these instances, we already have the social foundations of reading non verbal cues and perspective.
Dr Lovaas started his work in the 60’s. The article above just documented what he was working on ( 1965) yet it was not until the 70’s that he started actual research, which resulted to his first research paper published in 1987. This is an estimation of about 20 + years of research before the first study was published, and going back further before a connection was made that behaviorism could benefit mentally handicapped children. Ultimately, Dr Lovaas was the pioneer who was able to help parents by giving them the choice to not have to put their children in institutions, which was typical and recommended at the time. Looking back on History, I think it is safe to say that in the years from 1960 through 1987 there were many parents who could of taken advantage of behaviorism to help their children learn rote skills…but it was controversial. The Norm was institutionalization.

Keeping this in mind, take a look at the following video- Personally, while I watched this video for the 4th time, I could not help but think of the Mom. Would she of had to stand up against the Norm to keep her baby out of an institution? As parents, we know she could never forget!! It is heartbreaking to even think about!!;photovideo

How different would the conversation be with her doctor if this happened today? Really. Would it really be all that different?? The players may be different but the story is the same.
It took one man( Dr Lovaas, ) over 20 years to even start to put a dent in the fact that our children could learn. No, he did not have all the answers… but he had questions. Questions that he was willing to explore that went against conventional mainstream recommendations.
I could not help but think how we, as a society tend to repeat our mistakes. History repeats itself if we do not learn its lessons.
We know Molly’s Mom was told to put her away. Was she given any other options? Was she told about any *emerging treatments?* Was she educated on all her options?

Fast Forward from that study from Dr. Lovaas in 1987, a few years to the 1990’s.
Dr Gutstein , through his work as a clinical researcher, program developer, therapist and teacher, based his work on helping our children on the spectrum alongside those in the field, but unlike Lovaas, based his work in part with the cognitive revolution which became popular in the second half of the 20th century. As the understanding of the human mind evolved, so did philosophies. He saw the cognitive advances in Therapies and knew that again, they were not being applied to Autism. Did he know for sure that cognitive therapy would benefit children with autism when he started? No...but just as Dr. Lovaas questioned whether those with autism could learn and therefore not have to be institutionalized, Dr. Gutstein questioned whether it was possible to not only teach those with autism basic skills but to use cognitive therapy to improve their theory of mind and raise the bar. Obviously the work of Skinner and Pavlov that behaviorism is based on differs from the theory of cognitive development which is in part based on the work of Piaget and Vygotsky when it came to mindfulness and the ability to obtain theory of mind, The more we learn about the mind, the more we can adjust to what is truly helpful in the long term. Dr Gutstein had questions too …and challenges that Autism effects development and if you address theory of mind, you remediate Autism. Behaviors are merely a byproduct of the lack of intersubjectivity that our kids have. Addressing behaviors are sometimes a necessary compensation, but not a long term solution. This is evidenced by no long term studies concerning the effectiveness of ABA. I also saw it with my own son as after 4 years in ABA still had the core deficits ( Theory of mind)of Autism
I switched to RDI because I agreed more with a cognitive developmental approach to help my own children, ( with behaviorism my children learned instrumental functioning compared to experience sharing of intent), Again, this was a result of my own questioning. Just for the record, questioning can be uncomfortable, as we may need to adjust our thinking when all is said and done.
RDI is considered clinically proven and an effective emerging treatment for Autism. Yet, there is controversy between many behaviorists and Cognitive specialists. Why? Because any new thought threatens the previous way of thinking….and we as parents have to sort through that. It is the same with Doctors who see that more studies need to be done to ensure safe vaccines, compared to those who do not want to acknowledge these needed studies.
As a parent, I had to get educated on what each therapy offers my child and make an informed decision. This process did take time away from my children short term. This is why I appreciated what Andrew Wakefield said on Good Morning America today. When asked what he recommends from George ( and George actually did not interrupt him) Andrew Wakefield’s reply was to read…look at both sides of the argument/options ( there are two sides), Get informed, talk to a sympathetic Pediatrician ( aka open minded)…certainly good advice no matter how you look at it.

It appears to me, this has been the problem all along. We are never really encouraged to do this except from those who know the information will speak for itself. We are *told* to vaccinate and that the risk is small. I have never heard a vaccine company suggest that we become educated on both sides even though there is a risk that my child could die from a vaccine. We are just told it is a small risk. For the thousands of families last year who have lost children to vaccines, I bet they did not feel that their loss was small. Yes, losing a child to a vaccine and losing a child to an illness are equally tragic, BOTH are preventable!!
What is needed in both the case of vaccines and in the choice we should have in the treatment of autism is to realize that we don't need to be adversarial or take sides. Asking questions doesn't have to be a "bad" thing. I asked questions and am educated in both behavioral and cognitive therapy. All throughout history we can see that by continually asking questions and challenging what we know is how advances are made. When we don't continue to ask questions and raise the bar, we are only hurting ourselves....and our children.

Can we *finally* learn something from History??