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??


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