THE ABSURDITY OF BEING TAKEN TO TASK FOR WHAT ONE DOESN’T SAY
In the last few months, Kev and I have not really communicated. That is probably a sign of the decline in the level of discourse in the on-line world of autism that we have both moved away from the center. I make no apologies for expressing my opinions honestly, and I certainly don’t expect Kev to apologize for doing likewise. Nevertheless, I think Kev crossed a line with a recent post, entitled Indefensible And Unprotested.
The point of Kev’s post is that some of us, including organizations and individuals, have not spoken out enough on the killing of Katie McCarron and the use of extreme aversives at the Judge Rotenberg Center.
I certainly understand the anger over the senseless and apparently criminal killing of an innocent child. In the only post I felt it necessary to write about the McCarron tragedy, I tried to make it clear that in the absence of evidence that Karen McCarron was unable to understand the moral consequences of her act ⎯ not just that she thought that killing her daughter might be in some way justifiable, but that she had a complete lack of understanding that killing is wrong ⎯ I would consider this to be murder. And I expressed concern that there would be a use of this unspeakable act to further agendas:
A child is dead because she was unable to defend herself from the one person she should have been able to trust more than anyone. She cannot defend herself from being used by any of us to further our various causes.
Those words were sparked by the announcement that the Autism Hub bloggers were going to devote a day of posts to Katie McCarron’s memory, but they were also intended to be a plea to those on all sides of any of the issues that divide us. I have to say that many of the Hub posts were quite respectful and moving; others veered into agendas. Those that used the death to make a point were not alone, though, as many in the press and in various corners of the web tried to connect this senseless act to a “lack of services.” That, as Katie’s grandfather, Mike McCarron, has pointed out in several places, is rubbish. Equally wrong, though, are efforts to use this death to make any other unrelated point. In his post, Kev states:
. . . To besmirch the memory of Katie McCarron by trying to empathise with her murdering mother and to try and absolve her and by implication blame the mainstream medical community is appalling.
In fact, the reverse is almost certainly true ⎯ the utter hopelessness that groups such as Autism Speaks like to foment are much more likely to have led to any depression Katie’s murderer might’ve had. And if she felt that vaccines caused her daughters autism then she long ago crossed the line into quackery. In this case, fatal quackery. There is still absolutely zero evidence that vaccines cause autism. Anyone ⎯ and I mean anyone who has had a hand in perpetuating that myth bears some responsibility for the murder of Katie McCarron.
. . .
I want to clue these killer parents and those parents and groups who ‘understand’ killer parents into something: Your child is not your property. You have no rights over them. You have an obligation to parent them, love them, feed them, clothe them, teach them and let them be who they are. When you have a child, you put yourself last. If your career suffers ⎯ that’s not their fault. If you can’t go out as much as you used to ⎯ that’s not their fault. If money is a problem ⎯ that’s not their fault. Stop transferring your unhappiness about the way your life has changed into excuses for killing, or understanding the killers of, children.
As Kev well knows, and anyone else who has bothered to actually read what I write should know, I happen to believe that vaccines played a causative role in my son’s autism, and I believe very strongly that I am doing the right thing in trying to reverse the effects of toxins that have triggered that condition. But I agree that my child is not property. I have no right over him, although I do have the right and obligation to make decisions on his behalf. I carry out my obligation to parent him, to love him, to feed and clothe him, and to teach him. He is who he is, and any recovery we may achieve from autism will not change that. And he will remain who he is ⎯ a loved and nurtured son ⎯ in the unlikely event his recovery ceases tomorrow. I put my son’s needs ahead of mine. My career has suffered; I don’t go out very much; money is a problem; and I have never blamed my son for a moment. That’s not what this is about, and it’s wrong to imply that it is.
Mr. McCarron left a comment on Kev’s blog that reads in part:
. . . Katie was murdered. Her situation is not about bio-meds vs. ABA, she was not given the opportunity to have any of those work or not work. People can talk all they wish about the stress of being a care giver. Katie’s care givers were my son and my wife along with a number of other people in North Carolina, they cherish every moment they had with her.
No little child should be murdered! That can’t be rationalized, excused or glossed over in any way. People speak of the “toll of autism”; I speak of the “toll of murder”. There will be a trial; the court will hear the truth.
In his grief and out of the purest of love, Katie’s grandfather is speaking the absolute truth. I cannot conceive of any possible justification for this beautiful child being killed. And to imply that everyone who thinks vaccines helped trigger their child’s autism is to blame for an evil act is just plain wrong.
I’m still unsure if Kev is mad because I didn’t single out for criticism the people who wrongfully use a child’s death to further some vague agenda about lack of services unrelated to an unspeakable act, or if he is really mad that I preemptively asked that no agendas be furthered.
With regard to the Rotenberg Center affair, Kev said this:
The NAA who regularly (and falsely) denounce good science and promote bad released a damp squib of an online petition and then fell totally silent on the issue.
Safe Minds? Nothing.
These, don’t forget, are the people who call themselves the autism community. Seems to me like they care about one issue and one issue only.
And how about the anti-mercury bloggers? The grass-roots ‘autism community’.
Adventures in Autism? Nothing.
Injecting Sense? Nothing.
Okay, let’s start with the National Autism Association. Although I can’t say for sure who spoke out first, I read the NAA press release before I saw Kev write anything about the situation. Here’s what the “damp squib” said:
“We can’t allow this to continue,” says Wendy Fournier, President of the National Autism Association. “There has to be a better way of addressing behaviors associated with severe autism and related disorders.”
The national group says regulations need to be in place to prevent aversive therapies. “We’re interested in talking to facilities such as the Rotenberg Center, and are willing to help in any way we can to replace these cruel therapies with something less aversive,” says NAA Executive Director Rita Shreffler. “These children simply cannot be subjected to these methods, and finding a better way should be the priority of these types of treatment centers.”
Maybe Kev doesn’t think the NAA used strong enough language, but I think they made it quite clear that there is no place for cruel aversives to be used in any autism facility.
As for SafeMinds and A-CHAMP, those organizations have a narrower purpose and are right to focus on their mission as organizations. That is not to say that individuals affiliated with those organizations do not hold the same views as were expressed by the NAA or by Kev.
I might add that most of the commentary I have seen on the EoH list has been quite adamant that the methods used at Rotenberg were unacceptable. I know Kev monitors the list, as he is never shy about mining comments he finds offensive to post for the world to see. Yet he now is creating the impression that all anti-mercury/biomedical parents must think aversives are just fine and dandy. (I don’t know that this is his intention, but it is surely what the tome conveys.)
As for me, I must first point out that the fact I did not find it necessary to state support for an obvious conclusion (i.e., torture is bad) does not indicate I hold a contrary opinion. But since it apparently must be said for me to maintain any kind of status as a blogger, yes, I am disgusted by the reports of what passes for “treatment” at the Rotenberg Center. I likewise think the Nazi movement was (and is) evil, that Idi Amin was not so nice a person, and that things are somewhat hairy in the Middle East these days. I didn’t think I needed to say any of those things, but apparently there are litmus tests to worry about. As Ian Parker pointed out in his comments to Kev’s blog, this attack is odd in that it isn’t based on what anyone has said, but based on what isn’t being said.
For some reason, Kev ⎯ whose site gets more visitors in an hour than a get in a day ⎯ thinks I hold myself out as representing “the autism community.” I’m part of an autism community, but I have never held out my opinions as being anything but my own evolving views. Why would Kev think otherwise? The answer is nothing short of mind boggling. When a fellow blogger tried to point out that nobody was trying to represent themselves as being a community spokesperson, here was Kev’s response as it related to me:
I recently read a blog posts of Wade’s where he described how ‘Injecting Sense’ stickers were being handed out at Autism One. I don’t know how much more one could do to promote onesself as a community venture than hand out what are to all intents and purposes ‘membership badges’.
I’m not sure how well the phrase will translate to the Queen’s English where Kev lives, but down in my neck of the woods, the appropriate response to such absurdity is “Say What?!?!?” For those who may have missed the explanation, a friend showed up at Autism One with a handful of cute little stickers with a blog logo on them. A few friends wore them in good humor, but we didn’t go around handing them out to one and all; we didn’t even have that many (although I still have a couple if you want me to send you one Kev). It was not intended to promote the blog as a “community venture.” Hell, if we had tried to hand them out en masse, I fear what we would have heard a lot of would have been, “Badges? We don’t need no stinking badges!”
That being said, a comment at Kev’s blog by “Dad of Cameron” correctly points out that I have used the first-person plural in a context in which I speak of commonly-held beliefs in the anti-mercury and biomedical sub-communities. I think that’s a fair comment in that I occasionally refer to broad opinions that define us as a sub-community (and please note that I am intentionally using the “sub” prefix; no group can claim it is the autism community). That does not mean I speak for all who fall into those sub-communities or that everyone agrees on all particulars. And it certainly does not obligate me to comment on every single issue.
No, I have never had ambitions of being the arbiter of community standards or setting a community agenda. But it strikes me that someone who is taking others to task for not expressing the “correct” views is trying to set the agenda and the standards for opinions. That is not the Kev I thought I knew, the Kev who relished a good debate and who was able to acknowledge he did not have all the answers. But that is the Kev who wrote that most recent post.
And Kev is not alone. I, and others as well, have found ourselves to be increasingly under attack in various quarters. After I left a comment (and to be sure, it was a very pointed comment) on another blog, someone noted that it was a very aggressive comment for someone who tried to project an air of balance. My immediate response was that balance is highly overrated. By my nature, my upbringing, and especially my training, I am inclined to see both sides of an argument, but that does not mean my opinions are neutral.
My inclinations have led me in the past to seek a dialog in the hope of focusing on what we all have in common. If we can define those commonalities, we are far more likely to listen to each other on the issues on which we disagree. Kev, among many, was active in that dialog, and for a while the discussion was productive. For some reason, however, some feel that my willingness to explore the possible commonalities we have was an effort on my part to hide the fact that I am anti-mercury, that I am pro-biomedical, that I am a “curebie.” Those people seem to feel that it has only been recently that my “true feelings” on these subjects have emerged. Whoever thinks that needs to go back and read some of my earliest posts. I have never hidden my views, which have evolved but have never been neutral.
That I recognize autism to be a broader problem than mere mercury poisoning does not mean that I have not always believed thimerosal to be the single greatest contributor to the autism epidemic. That I generally avoid most discussions of specific methods of treatments does not mean that I do not believe many such treatments have a place in the biomedical world. But discussions of specifics do little to advance the policy discussions to which I am most drawn. Autism is a unique condition to every autistic individual. There are no one-size-fits-all responses.
That dialog has fallen apart, in large part to the deaths of innocent children: first Abubakar Tariq Nadama and now Katie McCarron. The other factor leading to the widening rift was the Autism Speaks video (about which like so many other issues, you will find a great diversity of opinion within the anti-mercury/biomedical sub-community). If there is a central theme to the growing discord, however, it may be summed up in perceptions about one word: acceptance.
Although I would not ascribe this opinion to all who embrace the ideals of the neurodiversity or autistic pride movements, many seem to feel that parents turn to biomedical interventions because they can’t accept their children. That view was recently expressed in an NPR report on the autistic pride movement, in which Jim Sinclair stated:
“What the rest of the world needs to know about autism is that it’s not something that can be separated out from the person, it’s part of the person. And so you cannot meaningfully say I love my child but I hate the autism.
“That’s like saying I love my child, but I hate that she’s a girl and I’d like her to be a boy instead. So when you’re saying all of these things about how terrible it is that you’ve lost a child and how much your child is a disappointment to you, and how much that you wish you had a different kind of child, we’re hearing that. And what we're hearing is that you don’t want us and you want someone else instead.”
Again my response is “Say What?!?!?” (Truth be told, I had another two-word phrase in mind, but prudence dictates a milder response.) Nobody ⎯ and I mean nobody ⎯ has either the right or the ability to define my relationship with my children.
I accept my son and love him for who he is, and I would accept and love him if I had no belief that his autism could be cured/healed/mediated/reversed, etc. I have never been embarrassed to be seen with him or be identified as his father. I learned long ago that children ⎯ autistic and neurotypical alike ⎯ will follow their own path in life, so it is best not to have your own plans for their future.
I accept another truth though. Autism can be (not always is, but can be) a disability. It can stand in the way of an individual using all of the gifts with which he or she has been endowed. If that is the case, it is no crime to attempt eliminating the disabling aspects of autism.
I don’t buy into any crap about the hopelessness of autism. As the NAA puts it: “One thing’s for sure, autism is not a hopeless diagnosis.”
I hope that in the near future a meaningful and respectful dialog can resume.