If you’ve managed to find your way to this blog, chances are pretty good that you’re already aware of autism. In our house, we’re more aware of autism than we really want to be. But one is supposed to observe these events, so I thought I would list a few things about autism of which I am aware.
• I am aware that ⎯ despite what anyone may say to the contrary ⎯ we are in the midst of an epidemic of diagnosed autism.
Does that mean that the actual number of autistics has risen sharply? There is no way to answer that question. A convincing argument may be made for that to be true. On the other hand, it may well be that, from a quantitative standpoint, the number of autistics has remained stable. If that is the case, though, then it seems apparent that the severity of the clinical manifestations by which autism is diagnosed is greater in more individuals than before. In either case, there has to be a reason.
• I am aware that, at least for my family, autism is not a “living hell.” Neither is it a bed of roses.
I try not to blog too much about my son, and what we do for him. I can tell you this. We love our little boy for who he is, and we accept him unconditionally. We do not, however, accept what has been done to him.
Yes, there are many things we can’t do as a family because of l’il Rank’s autism. But we still manage to find joy in one another. I often say that a child’s autism bestows a special gift upon the parents; we get to celebrate little milestones and victories each day that other parents take for granted ⎯ that I took for granted with my other children. Being the father of an autistic child has made me a better parent to all my children.
That being said, autism presents challenges to development and to life itself. There is nothing easy about it, and the strain of dealing with it places a strain on family life. The irony of becoming a better parent to all my children is that there is less opportunity to be that better parent except with regard to the autistic child.
We are painfully aware that not all autistic children develop to become independent adults. Therefore, we fell it incumbent upon us to do whatever we can to see to it that our little boy will be just fine after we’re gone.
• I am aware that there is an unresolved controversy about the role of vaccines as a causal factor in the development of autism.
Some see the vaccine question as being two separate controversies: the role of thimerosal, and the role of live-virus vaccines (primarily the MMR). In all likelihood ⎯ and this seems to be the direction in which the research is heading given the likely involvement of the immune system ⎯ either or both can play a role. Anecdotally, problems with both metal toxicity and immune function are apparent in many autistic children, and treating those problems often results in alleviation of the clinical manifestations of autism.
All that being said, most of us who believe that vaccines played a role in our children’s autism also believe that neither thimerosal nor any live viruses would have caused the damage but for some genetic predisposition.
Are vaccines the only toxic exposure that can cause autism in a genetically predisposed individual? There is no reason to assume that the damage to the immune system caused by vaccines could not also be caused by other environmental insults. Exposure to lead, for example, could possibly be involved. Eating mercury-laden fish is often cited as a source of danger. If damage to the immune system is the key, then it stands to reason that there may be any number of possible insults that could cause problems. But the temporal connection between the rise in diagnoses of autism and additions to the vaccine schedule in the United States cannot be ignored, and thimerosal stands as a very likely culprit.
• I am aware that, for many autistic children, autism is treatable. Of course, the protocols that might be successful with one child will not necessarily work with another. The clinical picture is different for every autistic individual. Moreover, choosing an appropriate intervention implies not just looking at the causal factors in a particular case, but also weighing the known risks against potential benefits.
Okay, I said autism is “treatable.” Does that mean autism is “curable?” That depends on how we define “autism” and how we define “cure.”
If one defines “autism” as a genetic state of being, separate and apart from the clinical manifestations, then it cannot be denied that all of the protocols that could ever be devised are ineffective. On the other hand, if one defines “autism” based on a clinical picture consisting of various behaviors and/or dysfunctions, then anecdotal evidence suggests that successful treatment is possible.
“Curing” is a different question. Again, no known intervention can “cure” a person of his/her genetic predisposition for autism. Functionality, from both educational and social standpoints, is simply too fluid a concept to draw bright-line distinctions. As parents of autistic children, we struggle to find better words: alleviation, easing, healing, etc. Some of that struggle is tied up in the moral debate about the ethics of “curing” autism. Perhaps a better semantic construct could be found, but there is something so convenient about the word “cure” that I still tend to use it, but always keeping in mind the limitations of how far any intervention may take us and also how easily the word can be misunderstood.
The goal for my son is simply put. I want him to be able to function independently in a world he understands and in a world that understands him. I want him to appreciate all of the nuances of interpersonal interaction and of an idiomatic culture. I want every door of opportunity to be open to him.
Some of that requires making society more aware of autism and everything it entails. And some of that requires being aware of what my wife and I can do to help our son handle the challenges of autism.