Yes, I’m desperate. I’m desperate to help my son achieve a measure of independence. I’m desperate to prevent my son growing up to be seen as a victim. I’m desperate to see my son grow up with no barriers to hold him back. In other words, I’m a normal parent.
For awhile, I was getting wary of even mentioning the word “cure,” mainly because it seems to mean something different things to different people. I tried to explain my concept of a cure for autism, and hopefully I can use the word again and it can be understood that I am not trying to alter the laws of nature. So, why do we feel it necessary to resort to what some think of as experimental medicine to cure our children?
Ginger, over at Adventures in Autism, has addressed the “why” question in a couple of recent posts. First, in "How Autism Threatens Children's Lives," she passed on a recent news item about a young autistic boy who was found walking down the street in a town to which his family just moved. My immediate reaction was to recall the most terrifying 10 minutes of my life. We were in DisneyWorld not quite two years ago, and my son managed to elope from the stroller without our noticing his absence. The story had a happy ending; between a wonderfully trained staff and a big assist from the most potent child-finding force in the world, the volunteer “mommy brigade,” we soon had our son back in our arms. But at the time, “soon” seemed like an eternity.
My son could not tell anyone who he was, who his parents were, or even that he was lost. A mother who heard us describing our boy to the security staff walked up a hundred yards or so, saw him standing off to the side, and found the nearest employee (oops, sorry Mickey, I mean “cast member”). Had that happened anywhere other than DisneyWorld, would we have had our happy ending?
Ginger’s post drew a comment from Kevin, a blogger from the “other side” with whom I have developed a mutual respect and something of a friendship despite strong differences in opinion. Kev didn’t see how a lost child is related to a parent’s desire to “cure” the child’s autism. Specifically, Kev, the parent of an autistic child questioned the right to make a decision to cure:
… if our daughter came home to us in her teens and said on balance she wanted to be “cured” then I would move heaven and earth to make that happen. What we all do, we do for our kids right? But who are we to make such a drasticaly altering choice as “curing” their autism when they can have no appreciation of the way it would alter the core of who they were as people?
Ginger’s response was nothing short of perfect:
Who are we? We are their parents.
Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold.
We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.
Ginger expanded on the subject with a post entitled "Does Autism Treatment Change Personality," in which she explained:
… I think we have different ideas of what “cure” means. To me it is that he [Ginger’s son, Chandler] would no longer fit the DSM IV criteria. Most specifically, and most importantly, he would be able to accurately size up his environment, act appropriately in his own best interests and advocate for himself.
You see, the point is not trying to keep our children from being lost in a theme park or on the streets of a new city. It’s to keep our children from being lost in the world!
In addressing the usual criticism of seeking a cure -- that we’re robbing our children of that which makes them unique -- Ginger again hit the nail on the head:
The changes we have seen in Chandler have not made him different so much as they have made him ‘more’. We are finding that he has talents we didn’t know he had because now he uses them and even shares them with us.
I certainly recommend reading the entire post.
My wife and I remain committed to using whatever means seem appropriate to help reverse the dysfunctional characteristics we see in our son. That doesn’t mean that we don’t have bad days. But we often have the kind of day that opens our eyes to see the progress our son has made.
The other day I was talking to a good friend of ours who now lives in Texas, having lost the family home in New Orleans to Katrina. It has been a few months since I last saw her son, and I couldn’t believe what I was hearing in the background of the conversation. A six-year old child who just a few short months ago was struggling to put words together, was now stringing multiple sentences together in real conversations. He now shows interest in other people, and most especially, the feelings of other people. What made the difference? His biomedical treatment progressed to the point where chelation was added to the mix, and metals are being removed from his tissues.
That young man and my son have a long way to go before we can say they have reached maximum improvement. But we see improvement that seems to be related to particular changes in protocols. Yes, it would be nice to wait for the science to be all in place so we could know exactly what will work and what won’t. Autism, however, is a complex problem, and learning the solutions will take a long time. It may be that we will never learn one solution, because the impact on each child is so different. Perhaps the exact combination of genetic and environmental factors that leads to autism in each child is different.
We do what we can. As part of a responsible decision-making process, we weigh the potential benefits of any treatment against the known risks. And it doesn’t take much risk to outweigh uncertain benefits. Our friend in Texas put it this way: “I would rather have my wonderful boy the way he was than to put him in harm’s way.”
That statement shows the biggest fallacy in the stereotyped view so many hold of us. They think we’re only concerned with the destruction of our own self-image and our own dreams. Those who think of us in that way can’t see into our hearts. If they could, they would see that our response was, is, and ever shall be about the kids. I believe that those parents who reject biomedical interventions have the same motivations, the same fears, and the same love for their children. Their decisions may be right for their children; I am in no position to judge anyone but me.
Yes, we all do what we can. None of us, regardless of how we view and respond to our children’s ASD, know any other way to raise our kids. We’re parents.