Friday, February 17, 2012
Autism Recovery : A Two Step Process
I think the reason the process is so frustrating is that we don't understand what autism is and what biological form it takes in the body. We don't really know why a given therapy works when it works nor do we know why it doesn't work when it doesn't. There all sorts of theories about why something might or might not work, but when it comes down to it, there is little, if any, hard data about any autism treatment that can be used to pick the appropriate therapies for a specific child.
Or in other words, treating autism is a lot like playing pin the tail on the donkey, except you can't be sure that you are actually holding the tail and the donkey might be located on a different continent.
I have been constantly reminded of this simple, yet maddening facet of autism over the past couple of weeks. You see, twin A has been having something of a developmental spurt over the past several weeks. She has started spontaneously doing things that neither her nor her twin have ever done before. We have seen protodeclarative pointing, spontaneous sharing of interests, and spontaneous comments about the surroundings (i.e. a TACT).
But perhaps best of all, she spontaneously used those three little words that every parent is dying to hear from their child. She walked up to my wife, gave her a hug, and said "I love you".
So while I don't want to appear unmoved or ungrateful for the progress, the question remains. Why is twin A making this progress now when she hasn't been able to do any of these things in the past? And why hasn't her identical twin started doing the same things yet?
I think I know the answer but let's first dispense with the typical explanation. The typical rationale that is trotted out to explain spontaneous improvements like these is that they are just part of the normal maturation process. As children with autism get older, they will eventually acquire the skills that did not develop properly when they were younger.
But, while this might happen in some children with autism and has happened with my children in some of their skill areas, it has never happened before involving their ability to use language. Their lack of ability to use language makes up what could be considered the core of their autism and they have never made spontaneous progress in the use of language. Ever.
It literally took them years of hard work before they could understand any spoken language. And it took even more years of hard work before they could talk at all. And then even more years more before they could use more than one word at a time. Even today, they still have an extremely hard time when they try to talk and an even harder time when they try to use more than one word at once. They have had some success with alternative communication methods but they are extremely limited even with these alternative methods.
Or, to put it bluntly, the idea that the core disability of their autism suddenly and rapidly started disappearing because of some magical maturation process just doesn't hold water.
So, are you ready to hear my theory about why twin A has made this progress?
The answer is simple, we started her on a new supplement that is supposed to be an antioxidant, anti-inflammatory, anti-fungal, and pro- very yellow pee. This magical powder can also cure cancer, turn the moon into yellow cheese, and make everything you touch turn into gold. Or maybe that last bit was supposed to be: make a lot of money for the company that sells the supplement.
But seriously, I am actually crediting twin A's recent progress to an over the counter supplement. Now you might ask how I can do this with a straight face and without any double blind (or really any) studies to prove that my claims are true. After all, parents are supposedly very easy to confuse and are willing to accept any possible correlation as causal simply because the two things happen at the same time.
Well, I have my reasons and here they are:
First, while we have tried many things in the past with little or no effect, we have also tried a few things that have made a large difference as well. The most notable examples here for the twins are the GFCF diet and zinc supplements.
Second, identical twins - or at least our identical twins - tend to stay very close when it comes to abilities or lack of abilities. They do get a little ahead of each other at times but the other one almost always starts to catch up within a month or so.
It was well over a month and twin B did not start showing any of the same progress. That is until we started her on the same supplement. She has not yet caught up to her sister and the distance is still growing but she has also started showing similar progress after we started the supplement.
Third, for the past three years, twin A has lagged her sister during the winter months. She has historically struggled with some sort of seasonal depression. Now maybe our steps to mitigate the seasonal depression caused some of the progress but that is a topic for another time. The short answer is that nothing that we did for that should cause an increase in language.
Fourth, in case you can't tell from other things I have written, I am something of a skeptic when it comes to the science and treatment of autism. I don't accept anything without some sort of proof or evidence supporting it.
But, in this case, this new supplement was the only thing that has changed in the past six months and we aren't the only ones noticing the changes in twin A. Several different therapists as well as her teachers in school have independently commented on her recent progress. So we aren't imagining the progress.
So, after reading the above, you might be wondering if I have finally lost it and whether I am really suggesting that a simple powder that you buy over the counter can magically make minimally verbal children start talking.
Well, the short answer to that question is both a no and a yes.
There is no magical powder that can teach a non-verbal child to talk. You can't package up the knowledge of the English language into some powder and spoon it into a child.
But, and this is really the entire point of this post, recovering from autism is never going to be a single step process because recovering from autism involves more than just treating behaviors. Recovering from autism is about mitigating behaviors but it is also about attempting to treat the underlying biological problems that lead to the behaviors.
You cannot effectively treat the behaviors of autism without also attempting to address the underlying causes. Or maybe I should say that differently because you can make some progress without going after the underlying cause. How about this: treatments for autism are going to be the most effective when you can target both the underlying cause in addition to the visible behavior.
So while I don't really believe that some new magical supplement gave twin A the ability to communicate better, I do believe that the supplement managed to partially correct one or more of her biological imbalances that are caused by or related to her autism.
Beyond that, she is simply expressing abilities that she has learned over the years of therapy or maybe showing off new abilities that she has been able to learn recently because she is no longer blocked from learning them.
But whatever the source of her improvement, we will take it.