Wednesday, June 28, 2006

THE ABSURDITY OF BEING TAKEN TO TASK FOR WHAT ONE DOESN’T SAY

I got a lot of emails in the last couple of days telling me that I was being taken to task by a friend. I use the word “friend” without any touch of irony, as that is what I have considered Kevin Leitch since I started blogging. Despite rather marked differences of opinions on some of the core issues I write about, and even words by either of us that the other would consider lapses of judgment, we have been able to maintain an air of cordiality between us.

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.

ACHAMP? 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.

29 Comments:

Anonymous Common Sense said...

Amen, Wade. As for this:

"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".

I'm afraid THAT Kev is gone. The new Kev has no interest in engaging whatsoever with anyone who doesn't share his own views. I have suggested to him that it would be beneficial for him to make his blog a closed list. This will protect him from the intruders who try to give him another viewpoint. It is quite clear that he doesn't want to see it or hear it.

ps ... I speak only for myself here. Don't take what I say as commentary on what Wade thinks :)

6/29/06, 1:49 PM  
Blogger Randy said...

I've never understood what it is about autism that can turn some people into inflexible fanatics. I don't know if this Kevin fellow is one of those or not, and I know Wade isn't, but I've sure run across quite a few. I suppose that's one reason I don't blog much about autism per se but, rather, blog about my boys.

6/29/06, 4:09 PM  
Blogger Kristina Chew said...

I figured you would respond------keep on posting, writing, questioning, and, yes injecting sense, opinions, thoughts, and more.

6/30/06, 12:22 AM  
Blogger María Luján said...

Wade
Like you, I am not neutral. I am with my son, and I have several ideas to share, with my mind open to fruitful discussion.
I do not believe in a thimerosal and vaccines-autism such as in a causal relation WITHOUT genetic susceptibility present. I think that the problem in autism is very complex, related to individual genetics, and that environment (including heavy metals) can have a general very negative impact in autistic children, from all sources.
Yes, I do think that mercury as thimerosal has been an insult for my autistic child. Yes I do think that the actual compositions and schedule of vaccines can do a lot of harm to autistic children- and others genetically susceptible people-, yes I think that my son was very negatively affected by both. No, I am not antivaccine. I do think that my son was also affected by his particular genetics and what he breathed, he ate and he drunk, he was given as antibiotics, the environmental contamination and by epigenetics and gene-expression. I do no think in a conspiracy. My son´s soul has not been stolen by vaccines or thimerosal. The autism he has does not make my son less human. The autistic he is deserves all my consideration and acceptance and love and also the best medical care, a medical care I have not found in the mainstreamed medicine available.
Why Must I clarify the ideas presented above so many times otherwise I am considered "gullible" or unscientific?
Lately it seems that more and more people are adopting black and white positions- so the SOME extremists from yesterday are shifting to almost ALL today (at least the bloggers in Internet, except few exceptions of moderate ones like you Wade)- so I wonder

How does this situation help autistic people (children, teens and adults)?
How does this situation will change the way mainstreamed medicine (and society) preconcepts about autism (Autism=Hell, Autism=Cancer, therapy=ABA only)?
How does this situation will allow a space of real discussion of what is junk and what is not, what is useful and what is not and what treatments (under biomedical and mainstreamed) are really effective and safe?.
How productive exchange of opinions and science analysis can take place if all we have in the majority of the blogs is distrust, anger and more anger, and close mind in some cases, and this is related to close the heart to others position and this is repeated once and again if you read archives from 4 / 5 /10 /30 months ago, talking in GENERAL for one time? and WORSENING?

How vaccines and thimerosal would be analyzed seriously with the enormous charge of distrust and anger involved? IF there is a real contribution as an insult, not a cause, Who in the mainstreamed circle of scientists studying genetics related to autism is going to begin to study the issue in collaboration with those who propone a contribution?
When an integrative view of what autism is, considering genetics epigenetics gene expression and environmental potential contributions will arise, from the concerted effort of different groups studying the issue analyzing all the possibilities from the non-link and the link in COMBINATION?


How affects this to MY autistic son? I do not know but I am concerned about.

I wonder where learning (real learning from people thinking different and from fruitful discussion) is taking place in the web, about autism?


As a parent the (wrong) presentation of the issue is to pick between an infectious and potentially life-threatening disease (by do not vaccinate) or the risk of neurodevelopmental problems, autism and in extreme cases, death (by to vaccinate). No parent must be pushed in this position for me. And the presentation of this dicotomy is worrisome for me because it is not true. At an individual level is possible that vaccines can do harm. The main point for me is to detect what children are prone to the risk/negative reaction to avoid the potential of damage not to be pushed in the position of to vaccinate or do not vaccinate per se because this is not a solution; it is a nightmare. This is what I consider important and I wonder who is researching this?. For me it is not to vaccinate at any cost or not to vaccinate at all. It is much more complex. By adopting extreme positions a strong damage is being done to the vaccination program and at least to my autistic child in my personal view, indeed.
Like you, I want answers based on high tech science, no epidemiology or statistics. I want science-based on clinical studies of high quality-, not politics. I want to know about the truth and I refuse to be involved in a “game” where it seems more important to win or to be right- at any cost- than the truth. And like you I consider that autistic deserve and must be respected and considered and heared. However, this does not exclude me from my rights and my duties to give my son the best opportunities for the best life quality he can get under my personal research and responsability, using all the tools available to me with appropiate information.

And your concerns are my concerns.

Things are not simple. And simplification is opening abyss between parents of autistic children thinking different.

I also hope that the situation changes.


Wade, you always have provide me- and others- a space to share safely and constructively a lot of ideas and concerns. I do think you are open minded and individualistic. I do think you are respectful, even non-neutral, like I also am not.

Please keep posting. You are helping me a lot.

Thank you for all.

María Luján

6/30/06, 5:37 AM  
Blogger Doug said...

It's still extraordinary to me how families dealing with autism have so much anger and such a strong pull to be vindicated. A friend recently called me to recommend that I read an article on autism in time or newsweek. The comment accompanying was "The best part is they don't mention a cure."

I have my own beliefs about Autism and why it's now so prevalent but no-one should know or care what those are. I'm certain, though, that the overwhelming majority of people with the diagnosis and the people they touch want the best for themselves and the people they care about. We all do our best in a world without complete answers.

There's no reason to attack someone for thinking thimeresol is responsible or glutein or heredity or that autism can and should be cured or can't and shouldn't. We never know.

6/30/06, 12:27 PM  
Blogger Moi ;) said...

Don't you wish these people knew the meaning of Pot Kettle Black? @@

I fear for my kid, if this is the kind he will have to associate with as he gets older. They will be so narrow minded, they will never accept him.

BTW I posted about Katie McCarron, too. Shows you how much they read "our" blogs, heh.

6/30/06, 2:50 PM  
Blogger ballastexistenz said...

moi: (Stick with this story, there's a point at the end.)

I once gave a talk on human rights to a group of parents of autistic children. It was mainly about preparing children, whatever their level of ability in any particular area, for the world, as well as preparing the world for their children, and how to keep an eye on schools, and what goes on out there, and so forth. Very little of it was actually all that autism-specific, it was stuff that would apply to most kids in contact with the system, and some of it was drawn from stuff that applies to all people in general. I told them that they knew their children best and would unfortunately need to have to use their love for their children to do all these things because the world was going to probably be a hostile place to their children and they needed both themselves and their children to be prepared for it.

One woman, according to my staff, sat through my whole talk rolling her eyes and flipping her hair at me.

Afterwards, she said, "So I take it you don't think that autism is mercury poisoning?"

I had said not a word about the causes of autism in my talk, and I told her so.

She asked me if I was "potty trained". I was stunned. Again, this had nothing to do with the subject of my talk.

She told me that I must be talking about Asperger's. (Note: I can't speak, and don't look anything like the stereotype of Asperger's.) I told her I was talking about human rights issues that affect all people in some cases and all disabled people in others, and that this wasn't confined to one particular label.

She eventually announced, "My son is 9 years old and mentally retarded and autistic."

I didn't know what to say to that. She continued to make hostile (the hostility was largely in the tone), snarky, and undermining remarks, and then stormed out of the room when neither I nor anyone else showed much interest in the topics she was trying to throw into the discussion, and nobody joined her in her hostility. Afterwards, some of the other parents apologized to me and said that she was often a little like that but that they had never seen her so rude or hostile to anyone. I continued giving practical advice in response to their questions, and they asked me to come back another time (I never got the chance unfortunately).

I don't think she was like that because of her belief in mercury as a cause of autism.

I don't think she was like that because she was a parent.

I have a suspicion she was like that, in that particular situation, not only because of something about me, but because she felt like she was outnumbered, and she strongly believed in what it was that she thought, and she was on the defensive.

I have no idea what she is like the rest of the time. I have no idea if she's perpetually hostile, or just hostile when confronted with autistic people with a working communication system that allows them to use some form of English, or just hostile when confronted with someone that she believes disagrees with her, or what.

My point, though, is that a lot of people act like that. Some people act like that more than others. Some people are misinterpreted as acting like that when they are not.

When someone is on "your side," it is very easy to not see how it can look from another "side". I am sure that if several other people with her particular slant on things had been in the room, at least some of them might have seen her as sticking up for her principles, rather than needlessly haranguing an autistic woman about things the autistic woman was not talking about to begin with, and rather than in fact being incredibly rude and invasive. But whatever the composition of the room, people seemed to agree that she was being inexplicably hostile and nasty.

People who act like this, some or all of the time, as well as people who are misinterpreted as acting like this, some or all of the time, are contained in all communities, with all viewpoints. (Even supposedly "neutral" viewpoints, there's such a thing as militant neutrality as well I have noticed.) There is nothing specific to neurodiversity, any more than there is something specific to mercury-theory people, that causes this kind of thing, when it's actually happening. It is a mistake to tar everyone with a particular belief system with the same brush, and make broad sweeping statements about the character of everyone with a particular belief system on the basis of your perceptions of a few.

It's really tempting to say "See the lengths these people will go to," but I think that "these people" at some point includes everyone, and it's more important to look at the actions and beliefs themselves. People will be rude, narrow-minded, nasty, under-handed, vindictive, or whatever, on all sides of any debate, including the "middle", and in all communities, including ones that pride themselves on their openness. I think it's just part of human nature.

I recently read something by an autistic person who said he started avoiding anti-cure beliefs because he met a few people who believed those things, and he perceived those particular people as snobbish. That would be like, me saying that I was discounting the mercury hypothesis because I met a woman who practically screamed at me about it. I've evaluated it and happen to disagree with it, but it's not because of the people who believe in it, it's because of the evidence. I would likewise hope that our perspective is agreed or disagreed with on what principles it holds, and our community evaluated on what it is, rather than on whether or not some people act (or appear to act) like people in communities everywhere.

6/30/06, 4:52 PM  
Blogger María Luján said...

Hi Amanda

You said
People will be rude, narrow-minded, nasty, under-handed, vindictive, or whatever, on all sides of any debate, including the "middle", and in all communities, including ones that pride themselves on their openness. I think it's just part of human nature.
and I agree with you. But I also think that the effort- if it is necessary-to avoid all these behaviors- and the angry and rantness- and to construct a different place of discussion-where learning is possible- based on tolerance, reflexion, calm and true hearing is worth and important and valuable and needed. For me is a must...even if it is difficult sometimes. To respect the human being you have in front of you, autistic or not, is for me extremely important. and I ask the best I can for the same for me. I think in empathy and understanding when I exchange opinions. All of us can feel angry or depressed- and there are a lot of different reasons for this- but I do think that the only place to construct fruitful discussion/exchange of opinions is from the openness to learning and the true respect by the emotions, life experiences and intellect of all people.

Sincerely
María Luján

6/30/06, 5:53 PM  
Blogger Ian Parker said...

Wade, a great and necessary post.

Ballastexistenz - I'm absolutely overwhelmed by your eloquence. Wow!

6/30/06, 5:56 PM  
Blogger María Luján said...

and Ballastexistenz...
I want to acknowledge you for your blog. I consider that I have learned a lot from you.
Thank you also for your balanced post here.
María Luján

6/30/06, 6:08 PM  
Blogger Joseph said...

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.

That's where it becomes clear that you don't understand the autism rights movement. Many in the movement reach the realization that autism is a disability. The question is what to do about it and how it should be constructed. Should it be described as a devastation and a catastrophe for humanity? You could ask that same question about deafness or blindness, for example, and how blind and deaf people might feel about that. Should quakery be allowed to meddle in it? Should parents go around claiming they know about causes and cures when in fact no such things are known about (except for some well-defined sub-conditions)?

6/30/06, 6:38 PM  
Blogger Joseph said...

Ballastexistenz - I'm absolutely overwhelmed by your eloquence. Wow!

I also admire her insights. And she probably agrees they are part of her being autistic, not something that happens in spite of it.

Regarding Jim Sinclair's statement that Wade dismisses, I think a more thorough analysis is necessary. Wade basically says that autism is a disability and that wanting to have a child overcome the disability is not a wrong-headed thing to want. I don't see much of a problem with this, but it does have to do with causes and which parts of one's anatomy are affected. If, say, a child had a hearing impairment that could be overcome with an implant, I imagine most people would choose the implant. (There's probably an argument about whether adult deaf poeple would). But suppose the disability involves the fact that someone does not have eyes - certainly something totally incurable. In that case, it would make no sense to spend much time and effort trying to cure the disabled individual. More to the point, if someone has Fragile-X or Rett syndrome, there's really not much you can do about curing a gene. And phenotypically autism is like Fragile-X and Rett's, so it will not be surprising if it has analogous causes. And if it does, all of the advocacy about cures and such is not only useless, but also detrimental to the interests of autistics. A second aspect of autism that separates it from other disabilities is the fact that it's a brain difference. So it has a profound impact on the personality and way of being of an individual. Because of this, the question of cure becomes an ethical dilemma. To cure someone implies a personality alteration. Imagine that there was a technological way to alter the personality of a child to match our wishes and dreams. Would that technology be ethical? (In a more detailed message I could even argue that the difference between 'alterning personality' and 'curing autism' is nothing but a subjective construction). And the way you can usually tell if something like this is really an ethical problem is to ask the potentially affected individuals. Autistics have said that being cured would be akin to having an alien force power our bodies. Ethically, there's no justification for ignoring what autistics have said on this matter.

6/30/06, 7:22 PM  
Blogger María Luján said...

Hi Joseph
I do not consider AUTISM in one only level. For me it has many, different for each autistic child, teen and adult
a-genetics, this is called autism
b-transcriptomics, proteomics and metabolic individual presentation related to interactions with environmental and xenobiotics and other potential “insults” and “stressors”, this is also called autism
c-behavioral presentation of ASD, this is also called autism
d-familiar environment and attitude to ASD
e-sociological environment

Therefore following a) my son is autistic and following b) c) and e) he has autism. Item e) affects all the d ) and interpretation of c) . Item d) is extremely important in all the ways that love, acceptation, nurturing and caring is important in the development of emotional human life: parenting.And is in this dicotomy that the controversy is based. If only is a) and e) are acepted as the origin of the ASD diagnosed under the DSMIV and the emphasis is done on d) therefore you have the ideas of neurodiversity.If only is b) and c) the autistic persons are considered as sick NT people to be cured because the autistic person=autism. And the premise is that the NT person is trapped in a sick body.
However, a human being is much more than a list of fields to be studied in the ASD. I consider extremely important the spiritual, emotional, intellectual and cognitive aspects in autism, that for me are strongly affected by the familiar environment and the personal circunstances related to treatments and educational resources available.

The problem I see is how AUTISM as a WHOLE and the AUTISTIC PERSON are confused , differently but commonly.
If you equal AUTISM with the AUTISTIC PERSON and consider that they are one, the possibilities of the extremes are open

Extreme 1-AUTISM is BAD, and therefore the AUTISTIC PERSON is in BAD condition and you must remove it of any thinkable way, because it is like CANCER. In this sense this approach is based on what AUTISM presents as challenges to the autistic person and to the parents.

Extreme 2-AUTISM is GOOD and therefore the AUTISTIC PERSON is GOOD as it is. In this sense the approach is based on the view of the AUTISTIC PERSON first, that deserves,as each human being , respect and consideration. Extrapolation to AUTISM is done to consider then AUTISM a way of being.

I do not consider AUTISM a gift, but my AUTISTIC CHILD a gift. I do not consider to celebrate AUTISM but I celebrate his existence or in other words the CHILD he is, autistic or not. I enjoy life with my autistic son, even when I can not find enjoy in autism, because for me they are different things, being my autistic son a pletora of aspects to respect and being the Autism defined by very limited tools of diagnosis, and ONLY behaviorally. In fact ASD can be a misdiagnosis in many cases, because of the actual lack of biochemical markers accepted as biomarkers for ASD. The same behavior can have 5-10 unknown number of potential causes.

In my personal approach I combine the best of both; it is not an OR, is an AND under certain constraints. My son is autistic, he was born he is and he will be, because of his genetics. My son has autism, that is, all the results of the interaction of his genetics with the environmental insults (xenobiotics of any source , viruses and bacterian infections) that generates a lot of imbalances in his biochemistry and metabolic systems and this in combination produces some (how many?) behavioral symptoms that are used to diagnose autism under the DSMIV. I can heal/ treat the autism he has but I will not change the autistic he is. I can heal/treat the results of genetics (partially or not, I do not know) and environment but I will not change his genetics, I will only allow it to express the better way or correct problems with its expression that produces him disconfort or pain. Therefore I embraced from a) to e) with no problems and I do not see controversy at all. I hope he will be the best autistic he can be.

Therefore , genetically what is diagnosed as ASD under the DSM IV has the participation of between 5 to 100 genes. But this is not ASD in an individual level.
Genetics in ASD affects brain structure and , in a non completely understood form yet, gene expression , transcriptomics and metabolomics, having consequences in enzymes, cofactors and key systems in the body. Beyond the structural consequences, the physiological consequences need stressors/triggers to produce an imbalance enough important to surpasse the regulation networks in the body. You need the triggers for the medical conditions that are reported- scientifically and anecdotically- to be presented in many children with ASD, that are different for each individual condition.
Ethics has been mentioned and I find it unfair in terms of consider that parents doing biomedical are applying unethical rules. I will not change my son´s brain structure and genetics ;I will heal/ treat the biochemical imbalances I can detect/ heal with non-aggressive tools available to improve his life quality.
Is it ethics that my son was left with no test because “it was all the autism”… and I found a LOT of different medical biochemical parameters awfully imbalanced when I knew what to search?
Is it ethics that my son had certain symptoms ( the same as a NT child can have ) and he was not tested because “ it is the autism”?? and I found medical conditions closely related to the symptoms following known scientific publications in high level, high impact index journals??
Is it ethics if I left unattended these symptoms, even with a lot of properly conducted tests?
Is it ethics to consider that the parents observations means nothing? Specially if there are parallel changes in biochemical parameters with behavioral/sensorial/emotional/cognitive improvements?-although I accept that correlation is not causation when the coincidence is 100 % ….There is no justification for ignoring what clinical findings can involve for the life quality/health of my son.
Is it ethics that I am accused of unscientific….even if I can backup every of the tests and treatments in my son with biblography obtained from pubmed and related to related areas of nutrition, virology, immunology,gastroenterology, etc?
I respect that autistic adults have their own view of the world and ask for consideration. My point is why am I questioned because I am doing responsible and informed decisions; many times without interests about the why, who, where , when and based on what I introduced myself in biomedical and it is assumed that the only ethical and scientific position is from autistic adults ? I respect them,I learned about ASD from them but I have the right to chose the best for my son under my personal research because we do not know a lot about ASD.

Sincerely

María Luján

6/30/06, 9:36 PM  
Blogger Ian Parker said...

María Luján - Wow again

I can only wish that I could write that good an explanation and justification for my beliefs (so many of which are similar to yours).

Thanks for a great comment and explanation!

7/1/06, 12:14 AM  
Blogger ballastexistenz said...

With regard to loving a child and hating autism, one thing I said in an interview for the same radio show (but that didn't make it onto the air) was that there's no such thing as autism, and that this is probably what has a lot of people confused.

What there is, is a kind of person that is autistic, and this goes deeper than personality or culture. Just as there is a kind of person that is male or female, instead of an abstract concept of "maleness" or "femaleness" that each person "has". "Autism" is an abstraction, not a thing.

However, that abstraction allows people to believe that it's a thing, that can be separated from the person, rather than a word used to describe a certain aspect of the person.

And so, yes, if you hate the autism, you're hating a fundamental aspect of a person (this goes for if you're a parent, if you're autistic, whatever). That doesn't change based on whether or not it's considered polite or even downright shocking by your standards to "define people's relationship to one another for them".

It's only the existence of the abstraction of language, I think, that allows people to convolute reality into things like "There's a thing called autism and it's not really part of the person."

7/1/06, 7:15 AM  
Blogger Joseph said...

I do not consider AUTISM in one only level. For me it has many, different for each autistic child, teen and adult
a-genetics, this is called autism
b-transcriptomics, proteomics and metabolic individual presentation related to interactions with environmental and xenobiotics and other potential “insults” and “stressors”, this is also called autism
c-behavioral presentation of ASD, this is also called autism
d-familiar environment and attitude to ASD
e-sociological environment


The thing is, there's very little in terms of "insults" and "stressors" that could be said to be conclussively linked to autism. There's a well-documented correlation with perinatal complications, for example, but (1) this could be due to a genetic predisposition as well, and (2) what are you going to do about it?

What you're talking about is stressors you hope you can reverse. Correct? What if they cannot be reversed?

Also, you could easily believe the above about Rett Syndrome or Fragile-X. Why wouldn't you?

But as I said, I think the debate does depend on causes and whether it's really possible to deal with those causes. But the fact is that, despite 15% or so of autistics being able to lose a diagnosis over time, autism is not curable. And constantly obsessing about curing it, and constructing it as a devastation, does more harm than good. The other problem is all the quacks trying to make a buck out of the explosion in autism diagnoses.

7/1/06, 7:32 AM  
Blogger María Luján said...

Hi Joseph
I will repeat your comments and will commment about

"The thing is, there's very little in terms of "insults" and "stressors" that could be said to be conclussively linked to autism."

It all depends on the individual for me. What is stressor for one child can be not for another child. Beyond the diagnosis, the point for me is trustable , adequate and scientific testing in trustable adequate and scientific-based labs.

"There's a well-documented correlation with perinatal complications, for example, but (1) this could be due to a genetic predisposition as well, and (2) what are you going to do about it?
What you're talking about is stressors you hope you can reverse. Correct? "

What I can detect/treat/heal for me is the consequence at an individual level of the interaction of genetics in terms of polymorphisms ( changes in one base in a portion of a gene for example) or several of them with environment , considering the tools available - all of them.

"What if they cannot be reversed?"

The point is that at an individual level you can find medical conditions whose available treatments can not be safe for children or under familiar decission can not be considered like appropiate.
I will accept ( and I do) that some medical conditions ( which? how? why?) can not be reversed, but I will not consider in advance that there is nothing to detect/ treat/ heal.

"Also, you could easily believe the above about Rett Syndrome or Fragile-X. Why wouldn't you?"

No, I do not because in this cases there is a completely known genetic problem , that can be detected and correlationated with the consequences- through not known yet mechanisms- at all the levels I mentioned at a complete/partial zone of a chromosome.
About Fragile X
A person with fragile X syndrome has a mutation in the FMR1 (fragile X mental retardation 1) gene in the DNA that makes up the X chromosome. That mutation causes the cell to methylate a regulatory region of the FMR1 gene. The methylation turns off the FMR1 gene. Since the gene is turned off, the person doesn't make FMRP. That lack of a specific protein triggers fragile X syndrome. The FMR1 gene is located in the DNA on the X chromosome. The specific location is given as Xq27.3. That means it is on the X chromosome (X), it is on the long arm (q) and it is at the far end (27.3).
You can find here
http://www.nfxf.org/html/fmr1.htm
the overall explanation about the location of the mutation that sets in motion fragile X syndrome, that is near the beginning of the FMR1 gene. In this location, there is normally a series of about 30 repeats of CGG. In individuals with the premutation, there are from 55-200 of these repeats. Persons with the full mutation have more than 200 of the CGG repeats.

In the case of Rett, this is the explanation I found
MECP2 (methyl CpG binding protein 2 (Rett syndrome)) is a gene that provides instructions for making the protein MeCP2 that appears to be essential for the normal function of nerve cells. The protein seems to be particularly important for mature nerve cells, where it is present in high levels. The MeCP2 protein is likely involved in turning off (or "silencing") several other genes. This prevents the genes from making proteins when they are not needed. The MeCP2 protein binds to DNA at regions called CpG islands, which frequently occur near the beginning of a gene. The MeCP2 protein then interacts with other proteins to form a complex that turns off the gene. Researchers have not yet determined which genes are targeted by the MeCP2 protein, but such genes are probably important for the normal function of the central nervous system.

The MECP2 gene is located on the long (q) arm of the X chromosome at position 28, from base pair 152,808,110 to base pair 152,878,611.

Therefore in the cases you mentioned we are talking about thousands of basepairs that can be affected ( or altered) totally or partially- and in a big number. The overall effects in the total biochemistry are not elucidated yet.
But I consider also that if medical conditions can be detected/treated/ healed in these conditiions (Rett or Fragile X) that improves the life quality, it is worth the testing. In these conditions, you will not change the underlying genetics, but will improve the life quality, such as in the case of ASD at an individual level. Decissions about what to do after is prerogative of the parents in consultation with the doctors.

You say

"I think the debate does depend on causes and whether it's really possible to deal with those causes."
Not for me. The debate is related in my personal view about
1-how to improve life quality with the scientific information available.
2-what are the interrelation of genetics and environment in terms of impact in susceptible children

"But the fact is that, despite 15% or so of autistics being able to lose a diagnosis over time, autism is not curable."

If you are talking about aSD under DSMIV, such as is considered in mainstreamed medicine, a person who does not fit the criteria, lost the diagnosis. The main point is the attitude . In the same way that it was not a hopeless diagnosis when my son was diagnosed, the lost of fit in the DSMIV criteria does not imply a "cure", given the limited nature of the criteria used to diagnose for me.

"And constantly obsessing about curing it, and constructing it as a devastation, does more harm than good."

Yes I understand your point, but another attitude is possible than the extremes and I have tried to present you the alternative.

"The other problem is all the quacks trying to make a buck out of the explosion in autism diagnoses."

and I agree that parents must be very open to detect who is who in the world of autism treatments.
Sincerely

MAría Luján

7/1/06, 10:09 AM  
Blogger María Luján said...

Hi ballastexistanz

You say
And so, yes, if you hate the autism, you're hating a fundamental aspect of a person (this goes for if you're a parent, if you're autistic, whatever). That doesn't change based on whether or not it's considered polite or even downright shocking by your standards to "define people's relationship to one another for them".

It's only the existence of the abstraction of language, I think, that allows people to convolute reality into things like "There's a thing called autism and it's not really part of the person."

I do not share this point- but also really would not use the word "hate" in my case. Autism is a label given by a very limited diagnosis tool IMHO and the science say that there are many levels you can study THIS Autism and I agree with this- although I consider that -such as I pointed out above - a human being is much more than a label. Because the diagnosis is given based on behaviors and absence of certain skills (language for example) I wonder
how do we know if the behaviors are not resulting from the intrinsic of the person but resulting (some of them? how many and how?) from the interaction of the genetics with the environment- and the resulting medical problem?
Why many of the behaviors associated to ASD disappear under certain treatments (not behavioral) with parallel improvements in certain biochemical parameters? If they were intrinsic to the person, there were no way to change, such as there are no ways to change the DNA today.
What is the role of the triggers I proposed above in the imbalances at a systemic view that can produce "autistic" traits?
I do not exclude the importance of genetics (as polymorphisms) in some aspects of the personality, cognition, etc of the human being the autistic person is- because at a systemic view small changes have an exponential impact because of a domino effect- and neurotransmitters balance is important in many aspects of mood for example . I do not exclude the incredible importance of love, support and acceptance in the development of an autistic person. What I am trying to say is that not all what is considered "autistic" under the DSMIV is necesarily genetically intrinsic to the autistic person but the result of the interaction of the genetics with the environment.
I think that when you say
However, that abstraction allows people to believe that it's a thing, that can be separated from the person, rather than a word used to describe a certain aspect of the person.
you are considering how many people think that autism can be "adquired" for a NT child, such as a disease-like an infection viral or bacterian- can be adquired . AM I understanding well?


María Luján

7/1/06, 2:00 PM  
Blogger Joseph said...

"Also, you could easily believe the above about Rett Syndrome or Fragile-X. Why wouldn't you?"

No, I do not because in this cases there is a completely known genetic problem , that can be detected and correlationated with the consequences- through not known yet mechanisms- at all the levels I mentioned at a complete/partial zone of a chromosome.


Let me take just this point. If you consider the labwork that is done on autistic kids, I propose that similarly anomalous results will be obtained when testing Rett and Fragile-X kids. There's some evidence of this. (And you can ask Kassiane about some of the things she's had to deal with, including heavy metal toxicity). So a parent could very well have a kid with a condition similar to these two, and get into a false-hope situation regarding causes and cures.

And I should note there are some known causes of autism which are seldom tested for, e.g. a PTEN mutation.

7/1/06, 5:36 PM  
Blogger Joseph said...

What I am trying to say is that not all what is considered "autistic" under the DSMIV is necesarily genetically intrinsic to the autistic person but the result of the interaction of the genetics with the environment.

I agree with María to some extent on this. Autism is not a description of a physical reality. It is simply a concept that describes a set of subjectively observed behaviors. However, since it is a medical diagnosis, most people assume it must be a manifestation of a well-defined physical entity, with a well-defined cause. Reality is already more complex than this, if you consider that many causes of autism are already known (and all the ones that have been established so far are genetic). The physical causes not always result in what we call "autism", so we cannot say that the physical realities and "autism" are the same thing. The way I explain it is to think about "short stature", how it's defined, and its causes. You will see that it fits very well as an anology.

That's just one aspect of autism as a cultural construct. That is, does it really exist in nature or is it simply a classification of a subjective observation?

7/1/06, 5:55 PM  
Blogger María Luján said...

Hi Joseph
You say
So a parent could very well have a kid with a condition similar to these two, and get into a false-hope situation regarding causes and cures.

I agree with you that no false expectations must be presented in terms of cures and causes. But this is different to improve the life quality detecting/ treating/healing medical conditions that with the science/labs available are possible to detect/treat/heal with, many times, knowledgeable and open minded doctors. The attitude in this sense, not only from whom provide the information, but also from us-parents- in terms of expectations and avoidance of this kind of dicotomies, thinking with the focus in causes /cures, is extremely important for me in the way I particularly see my son-and personally I am far away of this position.

And I should note there are some known causes of autism which are seldom tested for, e.g. a PTEN mutation.
Yes, also some especific other genetic conditions are not tested.

María Luján

7/1/06, 7:39 PM  
Blogger ballastexistenz said...

Nothing I said changes at all in meaning based on whether or not a person's being autistic was caused by genetics or environmental factors, or both. Once a person is autistic, that's a kind of person, and a way of perceiving the world, and a part of a person, not an abstract thing a person can have.

7/1/06, 10:06 PM  
Anonymous Mary Webster said...

Wade,

During the past few days I’ve visited a few of the links you included in this post. The fact that 26 stickers (yes, 9 per page; 3 pages – I cut through one by mistake and tossed it) could invoke such distain is either incredibly amusing or sadly pathetic. As I am solely responsible for designing them, I feel it’s time I addressed my intent in creating the much-talked-about stickers.

Considering the inevitable sea of attendees at the Autism One conference, I thought it might be helpful if you had a means by which you could readily identify a few regular Injecting Sense readers. One of the luxuries of blogging is it allows you to interact with many people you wouldn’t otherwise have the opportunity to meet. One of the disadvantages, of course, is that you could pass someone on the street with whom you’ve had extensive discussions and not realize it.

I also hoped my simple gesture would be a way to thank you for encouraging respectful debate. (I’ve met few people with whom I feel as comfortable discussing my opinions – even when we disagree - than I do with you, Wade.) I wanted you to know how much I appreciate the time you spend and the effort you make towards that end. As I’m a lousy knitter and you are not likely to need a “nice” scarf which would almost certainly be too small and resemble something made by an eight-year-old, it seemed best to stay in familiar territory with the gift. It was a gift, after all – nothing more, nothing less.

I’d also like to take just a moment more to speak to your intent in mentioning my gift on your blog. I may be mistaken, but when I read your remarks about the stickers in your earlier post, I interpreted them to be a public “thank you” from one friend to another – nothing more, nothing less.

And, Wade, you’re welcome,
Mary

7/2/06, 9:26 AM  
Blogger María Luján said...

Hi ballastexistanz
You say
Once a person is autistic, that's a kind of person, and a way of perceiving the world, and a part of a person, not an abstract thing a person can have.

But I have had always several questions about. Let´s go to imagine that not only a different genetics but also a different biochemistry and physiology and brain structure and many other differences can be found between autistics and non-autistics. Depending on individuality, environment can have different impact.
Many times, ASD involves a lot of sensorial issues, GI issues, neurological issues- in terms of neurotransmitters for example- and behavioral issues and it is not known -for sure- how the behaviors are affected by all the physical facts.
Therefore I wonder
What if the sensorial issues can be detected/treated/healed?
What if the GI issues can be detected/treated/healed? and so on.
The child/teen/adult , for me, will not change his/her genetics but how do we know that his/her behaviors and many others aspects of his /her life, including mood can not be affected positively in terms of confort and easiness of daily life- not "normalcy" in terms of being the best autistic he/she can be?
For me , the only way to know is to test and , after having positive results, to treat with the best tools available under our (my husband and I) most responsible and informed decision possible.

María Luján

7/2/06, 9:51 AM  
Blogger Wade Rankin said...

Thanks to everyone for a good, spirited, and civil discussion of the issues underlying this post. I may have more to say about this in the future.

I also want to thank mary for posting a comment. She has been a good friend, and neither of us should have to spend time explaining the whole "sticker thing." Mary used the phrase, "incredibly amusing or sadly pathetic." I tried to treat this non-issue as the former, but I am starting to feel it is the latter due to the fixation some people (and I'm not really talking about Kev here, but more about some folks that have left comments at his blog and in other places). I have tried to incorporate the design into my blog template, but I'm afraid I'm not that good at web design and I really don't have the time to learn any time soon. In the meantime, I will be using the sticker design as the avatar for the blog in place of the picture of Capt. Percival I have been using. The point is not to create a "community" identity, but simply to give the blog an identity beyond that of a Cairn Terrier (albeit a highly intelligent and beloved Cairn Terrier). And Mary's design does that quite nicely.

7/2/06, 11:53 AM  
Blogger Ian Parker said...

Just a couple of thoughts.

First, as I've checked back on this thread I've been tempted to respond to a couple of comments, but then I read down and see María Luján's comments, and I can't say what she has said any better. So instead, I'll just say, "I'm with her" (pointing in María Luján's direction).

A second thought is related to Mary Webster's comment. As a friend of mine at work says, "No good deed goes unpunished." In this case, too true.

7/2/06, 4:41 PM  
Anonymous Mary Webster said...

"No good deed goes unpunished."

Hi Ian,

In that case, I'll consider myself in good company.

Thank you,
Mary

P.S. Your daughter is lovely.

7/2/06, 11:09 PM  
Blogger Ian Parker said...

This comment has been removed by a blog administrator.

7/3/06, 11:13 AM  
Blogger Ian Parker said...

Thanks Mary. I agree on both points, considering myself in good company too.

7/3/06, 11:20 AM  

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