The McCarron family and the Leitch family have become close over the last few weeks. We have never met. We have never heard each others voices. We have only seen pictures of each other and communicated by email but in that communication has been a sharing of warmth, emotion and desire to connect such as some people never seem to get in their lives. We have swapped addresses as well as photos and they know should they ever want to come to the UK they have a home here. We know that the reverse is true also.
And yet I wish it wasn’t so. A part of me heartily wishes I’d never spoken with Mike. I’m sure he feels the same. This is because of the circumstances that led to us meeting. The murder of his granddaughter, Katie McCarron. If I could ensure a return to life in the arms of her dad, sister and grandparents by swapping that for the friendship of one of the kindest, bravest families I’ve ever met then I would do it in an heartbeat.
Mike refuses to see Katie portrayed as a burden, or as someone in pain. This is because she wasn’t. He also refuses to let people directly or indirectly attempt to absolve Katie’s killer by making murder the responsibility of an uncaring society. This is because it wasn’t. It was murder.
Recently, Stephen Drake of Not Dead Yet, wrote a press release calling for restraint when reporting these kind of murders – i.e. murders of disabled kids.
Researcher Dick Sobsey has documented an increase in the murders of children by their parents in Canada in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person. More space should be devoted to grieving family members than sympathetic friends of the accused killer.
And yet, yesterday, the Chicago Tribune released a piece of journalism that can be best described as callow.
The piece starts off by portraying members of the mercury/autism connection as the inheritors of the sort of stigma that those who actually were persecuted by Bettlehiem underwent:
It has been nearly 50 years since mothers shouldered the blame for their children’s autism. Yet for many parents, echoes of that painful era remain……
In the 1950s and ’60s, the medical community accepted University of Chicago psychoanalyst Bruno Bettelheim’s assessment that “refrigerator mothers”–those with a supposedly cold, unloving demeanor–brought on their children’s disorder.
Although we now know that autism is a neurological disorder and not the result of bad parenting, the exact cause remains a mystery.
Many parents, however, are convinced they’ve found the answer. And most experts are on the opposing side.
Indeed, few medical battles are more charged than that between parents who believe mercury in their children’s vaccines brought on autism and the medical establishment that has found no evidence to support that claim.
Where the ground really starts to shift is the next association made – that it was this society induced guilt that led poor heroic Karen McCarron into killing her vaccine-injured ‘heavy toll’ inducing daughter.
Some who knew McCarron through her work with an autism support group say the physician blamed herself for allowing her daughter to be vaccinated, and feared that the available remedies wouldn’t make enough of an improvement to her daughter’s quality of life. Others suggest that perhaps working among other doctors skeptical of the vaccine connection created an emotional tug of war for McCarron
I think I know Mike well enough now to be absolutely sure that he and his family would be _outraged_ at these utterly vacuous statements. 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.
On the 22nd of June, Kellie A. Waremburg attempted to kill her four year old daughter. Thankfully she failed. Her daughter has cerebral palsy.
Shortly afterwards, the same barrage of testimonials commenting on how good a mother Waremburg was came out and how difficult it is to parent a child with cerebral palsy:
“She’s always been a good mom. She’s always interacting with her (daughter),” said next-door neighbor Katie Gardiner.
Families face challenges, there’s no question about it. Children have varying degrees of impairment. For some families, there is a minimal impact to families who need to take every aspect of their child’s care – feed them, dress them, toilet them,” said Morgan, who also is the chief of the section of child development within the Department of Pediatrics at University of Illinois College of Medicine at Peoria.
So? So what? Get over it, get on with it. If you can’t, then hand your child over to family members or social services and let someone who doesn’t put themselves first get on with it.
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.
I’ve had two themes running through this blog of late. One is this one – the murder of disabled children. The other one is what’s going on at the Judge Rotenberg Centre where electric skin shock is used to punish autistic and non-autistic students. People who believe in the concept of neurodiversity have been outraged and blogged both of these events continuously and thoroughly.
There is however, one section of people who has remained utterly and totally silent on both issues. The self styled ‘autism community’ who perpetuate the ongoing myth of vaccines causing autism.
Autism Speaks released a short movie about the horrors of having to live life with an autistic child. I’ve seen no movies about the JRC, or investigations into electric shocks for autistic people.
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.
UPDATE: Ginger informs me that she’s temporarily not blogging at all and hadn’t even heard of Katie McCarron. In this light, it doesn’t seem fair to place AiA here.
Injecting Sense? Nothing.
Whilst these people continue their obsession with trying to find some kind of spurious link between vaccines and autism the world continues to turn. Whilst they present themselves to politicians and media outlets as the autism community, the world continues to turn. Whilst they attend single issue conferences, the world continues to turn.
Unless you’re Katie McCarron. Then the world doesn’t turn at all.
Unless you’re Lexus Fuller. Her world is shattered as she must grow up knowing her mum tried to kill her.
Unless you’re a student at the JRC where the world and time must appear to stand still as you are electrocuted for non-compliance.
Left Brain Right Brain 
That Ian, is the first time I’ve heard you cop out of an issue. Sad to see, especially when you are not mentioned in any way whatsoever.
Here’s the thing – all these groups are representing themselves as ‘the autism community’. Its my opinion that anyone who paints themselves in that light has a certain obligation to represent that community, which is why I didn’t mention you. In other words, if you want the mantle, earn it. This isn’t a case of dictating anyone’s agenda, this is about standing up for what’s right. Another reason I didn’t mention you.
If you seriously believe that bringing the activities of a place like the JRC to the attention of your blogging readership is political correctness then I don’t know what to say to you. Please don’t take that too personally – I wouldn’t know what to say to _anyone_ who thought that.
I don’t believe that bringing the activities of a place like the JRC is political correctness. I do believe that expecting everyone else (people, not organizations or representatives of organizations) to have to say the same thing is political correctness. In no way am I copping out on this issue, and you may note that I specifically did not mention any organizations, but rather talked about individuals.
Kev, I admire your dedication and commitment to autism, and I think that you do a great service for all of us with autistic children, even when we do not necessarily share all of your beliefs. But I think it is going too far to attack individuals for what they have not said. Especially when they have not – to the best of my knowledge, feel free to correct me – stated that they represent the ‘autism community’.
Feel free to go after Autism Speaks (the video pissed me off, as I think my post on it makes clear), or any organization that makes claims to represent the autistic community but is not properly doing so. Not only do I have no issue with that, but in many cases I will probably agree with you, and as I believe my post on the video shows, do the same thing, according to my own viewpoint.
And far from copping out, I specifically am commenting on this because I think your post went too far against individuals. By all means feel free to go after anyone who writes anything that attacks autistics, or demeans them in some way. But for individuals I think it is only fair to wait until they say it or write it first. Interpreting an absence of words in this case is akin to putting words into their mouths by implication, and then calling them on what they haven’t said. And while I am not mentioned, I think that speaking up about this is the right thing to do, which is why I am writing today.
Kevin’s britches are starting to feel tight on him, I believe. I read this community often and I agree with most of the things Kevin says, but I believe in this case you are taking advantage of a situation where a mom killed her child to make judgments about a biomedical movement that I do not support but I still think the jury is out on. I posted an article from the Sunday Times because this remains a very open debate and that’s a lot coming from me because forever I was offended when people said Aspies are anything but O.K. Why do these kids have comas after MMR and why are they finding this stuff in their brains? There were other parents who killed their children, 2 I know of, and why aren’t their stories also mentioned here?
Aspie
“There were other parents who killed their children, 2 I know of, and why aren’t their stories also mentioned here?”
maybe you missed the autism hub memorial
“I posted an article from the Sunday Times because this remains a very open debate…”
If Warren Buffet would have donated his billions to the search of the chupacabra, that’d become a pretty open debate too.
Ian. When one blogs in defense or support of a particular position, one becomes – for better or worse – a vocal proponent of that position.
As it is, Ginger contacted me to say she’s never even heard of Katie McCarron or the JRC and so I added the appropriate update.
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’.
Aspie – Not being a britches kind of guy I’ll pass on the relative close fit of my clothing as you describe it but what I _will_ say is that this post was written in response to an article that created the connection. I responded to that article with my opinion. Your belief that I would in any way ‘take advantage’ of this situation is incorrect and incredibly callous. If you feel there shouldn’t’ve been a link created between the biomed community and Katie’s murder then you need to take it up with the person who created it – you’ll find their contact details in the Chicago Tribune piece I linked to.
The Sunday Times stuff you posted is irrelevant to this thread.
I’ll end by enclosing a favourite quote of the EoH collective:
“The only thing necessary for the triumph of evil is for good men to do nothing.”
I don’t know if I’m a good man. What I do know is that I have no intention of doing nothing.
Kev wrote:
“Ian. When one blogs in defense or support of a particular position, one becomes – for better or worse – a vocal proponent of that position.”
Yes, I agree. The definition of proponent is “One who argues in support of something; an advocate”, which is not the same thing as claiming to represent an entire community of people. I am also a vocal proponent of a position. But I make no claim to represent a community. Most days I can’t even lay claim to representing the views of my household.
When one does claim to represent an entire community of people one is presumably authorized – indeed obliged – to speak on their behalf, i.e. to ‘represent’ them. But expressing a viewpoint as an individual, even consistently (hopefully consistently) is not the same thing. You write from a neurodiversity viewpoint. Should people therefore hold you responsible for everything anyone who also holds a neurodiversity viewpoint chooses to express? What about if someone expresses a POV that some see as offensive? Are you obliged to condemn that POV? Should your silence always be taken as agreement or complicity?
The next time someone speaks out against autism research, will you feel compelled to state a position on exactly what autism research you support and oppose?
Again, to be clear, I’m not saying that you should not point out that organizations that claim to represent the autistic community are silent on issues that affect the community that they claim to represent. Kudos for pointing this out. But I am saying that individuals should not be compelled to speak out on every issue, especially in a contentious atmosphere, as long as they are acting as individuals, and their silence should not automatically be used against them.
As for the stickers, Wade wrote:
“An early surprise at Autism One last week came courtesy of our Virginia friend, Mary. She has apparently decided this blog needs a good publicist, and Mary came to the conference armed with stickers and postcards bearing a new Injecting Sense logo (see above). There’s no reason to worry about such efforts going to my head. The one person who would not wear one of the stickers was my lovely wife.”
It sounds to me like it was someone else’s idea. I wouldn’t interpret someone handing out Left Brain/Right Brain stickers at Autreat as anything more than publicizing a blog that they liked and agreed with, unless you publicly chose for it to mean more. Having said that, I’m not a fan of the stickers either, albeit for aesthetic reasons (sorry Wade).
To be clear, I would support the proposition that you are a good man, I’m glad that you’re there as a strong and forceful advocate for autism, and I would consider it a shame if you ever had the intention of doing nothing.
But I think that you are wrong on this one in holding individuals accountable for the absence of commentary. ‘Representative’ organizations, yes. Individuals, no.
The family has said it over and over and over and over and over and over and over and over and over and over!
This was not about autism. This was not about biomed. This was not about ABA, TEACCH, ST, OT, PT, SonRise, respite hours (which, I might add, are abundant and easy to come by in central IL but as Katie didn’t live there it’s a moot point).
It is about a little girl who should be playing with her dolls and running in the grass and hugging and giggling and smiling and learning. It is about a beautiful little girl who I for one would have been honored to know. A wonderful, sweet, loving little girl who had her life stolen far too soon in a cold and calculated act by someone she loved and trusted who had taken the Hypocratic Oath, and turned it into the Hypocrite’s Oath. Cold, calcuated, precise, and planned. The light of the world shines a little less brightly because of the acts of the egg donor (if it wasn’t already clear how I feel about Karen McCarron…)
It took a few days for the reporters to come up with autism everyday and watch this load of crap to see why. Then the TRUTH about KATIE, the PERSON, not the condition came out. So a few weeks later, it must be guilt! Vaccine guilt! That made her do it! Or she was mentally ill or something, she DID make a pathetic suicide “attempt”-tell me that you have an MD and don’t know how to REALLY overdose. Puh-leeze. I knew how for asprin, acetemenophen, and ibuprofin by 5th grade.
No. This is called trying to get a sympathetic jury. They are doing everything they can to make excuses for Karen’s actions. This is unconscionable (word? ah who cares). A little girl is dead because of some unbelievable selfishness and cruelty.
It’s even worse than making Katie’s death a symbol for vaccine/services!/biomed/batshit crazy parents to rally around. And that too is despicable.
I was always taught to respect the dead. That includes dead murdered children, thank you. Her life deserves celebrating and her death deserves mourning. And her memory deserves to be treated as the family (paternal side in this case) sees fit.
Something tells me that isn’t happening. And it’s sad and revolting.
Hi Kevin
You said
“The only thing necessary for the triumph of evil is for good men to do nothing.â€
I don’t know if I’m a good man. What I do know is that I have no intention of doing nothing.
First, I must say that this sentence was born in times where women had other presence. I would say
“The only thing necessary for the triumph of evil is for good men and women to do nothing.â€
I do believe that the majority of people commenting in blogs related to autism seems to me to be good people-and I do not know you enough to say you are/ you are not a good man; you seem to me a good one-, many of them concerned parents about their children´s futures and life qualities, many of them autistics themselves, or researchers in autism or advocates or combined. What I do think is that to be a good person-even an excellent one- does not imply to be right or to have an appropiate way of discussion in a so sensitive issue for many of us. . What I do think is that I do know bloggers/commenters only from their posts or when they have been interested enough to answer from their e-mails and sharing ideas/discussions with me and from their attitudes to those who think different about how they present and defend their ideas, how they respect others , how they use or not sarcasm-sometimes bloody and from personal experience even very hurting-, how they twist or not words, how they manage to present ideas as facts or not in science, how they consider that they are talking with a broken heart parent from the other side of the fence or not-even thinking different-, how they respect autistic children-their own and from other people-teens and adults, how they feel when autistics are mistreated, how they have reacted in words to the Katie Mc Carron´s murder and so on. I know what I do, how I feel and how I have managed all my interactions in the web and in private mails. I also know many of the bloggers/commenters here in the web and how they have expressed to me, even thinking different, even thinking very differently.
Therefore I have never understood why attacks become personal about what is not done/ is done with our children or what is not said or what is thought in biomedical. One aspect is to criticize certain agendas and political ways to obtain points or adepts from certain organizations or to evaluate doctors promoting certain treatments and their credentials or conducts. But I agree with Ian in every of the words of his posts. Another totally different to criticize people by words they do not write.
Where has the productive debate has gone if every attitude is analyzed with mistrust?
It is more and more difficult these times to learn about ASD in the web and is more and more common to become angry or offended or got tired of being mistreated or offended.
There are many things we deal with
1- what is known in science about ASD
2-what is published in science about ASD
3-what is applied in medicine in practice in ASD
4- what each of us think is ASD individually and in general
5- being a parent, our personal experience with ASD in our son/daughter, our fears to do/not to do the right thing. What is the right thing to do indeed FOR SURE in ASD?
6-what sociologically we must face related to ASD
7- what is the truth about ASD individually
8-AND actually an enormous amount of anger and dispise and disconnection in the open weblogs from one “side” to other “side”
Related directly to the Katie Mc Carron murder, I feel an enormous respect by her dad, grandparents, sister and other relatives. Therefore I have tried to be extremely respectful from her memory. I think that they deserve our consideration and they probably will let us know about their thoughts in the trial.
Nobody has the right to use Katie Mc Carron murder for personal or advocacy- of any kind- purposes for me.
Her family can be reading every of our words. Honoring them with our support and respect. We must honour Katie McCarron memory.
Even when I have been sometimes very mistreated by people of both “sidesâ€, I try to think about this, always:
Not only other parent can read my words, also sisters and brothers of autistic children/teens and grandparents. Even autistics, children, teen and adults, can read my words. All deserve my consideration because My parents,my husband, my NT daughter and my autistic son-perhaps not now but in the future- could read my words…
Many many times, the same arguments are applied to one side or the other with some strategic changes of words, because many defenders of extreme positions use the same basic words and arguments. For rant, anger and improductive and hurting exchange of opinions, the only difference between them are the excuses (“they started it†is the most I hear).
Generalization is doing a lot of harm here. Both extreme sides generalize, talking about science, people and ideas.
Neither of them represents me.
It seems that the idea is “you are with us or against us†and if you do not choose you are left in a limbo and any mistrust or dark intention is allowed to be suspected.
Sorry, I am , like Ian, with my son.
Aspie
Honestly, I consider Kev a very strong and forceful advocate parent and I share many of his critics to many aspects of biomedical. I think he is very passionate about his commitment to his fatherhood and to his autistic daughter and I respect profoundly by this, even when I think different in a lot of things. I do not think he is trying to do what you say Aspie, but Kev, I think you are not right in attacking Wade.I appreciate Wade Rankin a lot, sharing many of his ideas and concerns and I do not understand why in advance there is always present the mistrust or the idea of some dark intentions when you say/ do not say something, especially when Wade has demonstrated many times his moderation and his blog is a demonstration of it.
I have been severely misunderstood many times by some biomedical critics I tried to do my best to explain… and unfortunately the reactions sometimes are still aggresive for free.
I wonder if anytime in the future all of us that want to do something- but not of any way but properly- can have more places where productive exchange of ideas , even about difficult and extremely important topics like this, can take place. For now, these places are being more and more reduced in number.
Sincerely
MarÃa Luján
OK, so it’s a little late, but as for the woman who jumped from the bridge in England. She was a carrier of Fragile X, certainly, if she was the natural mother of a boy with Fragile X, as is claimed. Her decision to kill herself might have more to do with unnecessary shame over being “defective” herself and for producing a “defective child.” She didn’t mention a lack of services in her suicide note, did she?
I gave birth to one of those seriously disabled children, the kind that usually live with their parents forever… my ASD child still lives with me and xe is 25 years old. There have been great stresses, but one thing I know, that if it gets that bad there’s usually some way to make it better. People can get very depressed and lose touch with reality, but most folks would rather do anything than see their own child dead. And really, really, depressed and desperate parents take themselves out with their child… not good, but at least there is some kind of gross logic there.
Keviin is totally right, the discussion of services needs to be entirely divorced from the discussion of supposed stress supposedly leading to murder. As for the phenomenon of copycat crimes, it is widely recognized that ill-conceived discussions in the press of teen suicide lead to more teen suicide. Not that suicide is the exact same thing as the murder of a child, but it’s logical to assume that if a parent sees community support *for a parent/murderer* s/he might think the same support would be offered to him/herself.
The need for services for adult autistics is totally impacted by the epidemic-parents who insist that autism is rare among adults. (OK, that’s a little tangential).
Autism Diva hasn’t blogged the JRC mess, but has commented on other blogs about it. Autism Diva doesn’t get recognition for “speaking for the autisim community” at large and doesn’t try to put herself in that position. ASA has known for a long time about the JRC and has at least prevented Matthew Israel from promoting his torture-land at ASA conferences, but they haven’t said much about the use of aversives in autism, they haven’t pubicly condemned JRC, as far as I know. They should be offering professional advice on why it’s wrong to send young people there.
What’s happening at JRC is huge. It’s not a little thing. All the autism organizations in the US should have something to say about it, and not just now, but a year or two ago, or more.
The problem with the mercury parents is that usually the only thing they can say will have the word, “mercury” or the words, “heavy metal toxic” included. The most we would expect from DAN! and the mercury parent bloggers, Lenny, GR etc, is: “This wouldn’t be happening if those kids had been chelated properly, or if they had never been vaccinated.” Anything else is off-topic and doesn’t contribute to their winning their omnibus vaccine lawsuit -their big (hidden) focus. It was surprise to me that NAA wrote anything about the JRC, but you can see that they didn’t do much with it. They are busy attacking the CDC right now, for it’s imaginary crimes.
ASA isn’t going to be making a statement about the value of autistic lives, not so long as they present autism as a horror and burden on gettingthewordout.org .
Ian said: “But I am saying that individuals should not be compelled to speak out on every issue, especially in a contentious atmosphere, as long as they are acting as individuals, and their silence should not automatically be used against them”.
Here’s a bit of the conclusion from Wade’s post “We shall not be moved”:
As a whole, we are people of good will. Nevertheless, we cannot and will not forget what has happened to our children. Yes, there are a lot of us out here, and we’re not going away any time soon.
Here’s another example from the conclusion of Wade’s post “Rolling Snowballs With Friends”:
“We’re not going away until we find the truth that shall free our children of the obstacles caused by autism. We’re not going away until we find out why our leaders decided it was a good idea to inject poison into our children. There is much that still divides us, but we’re not going away until we reach a consensus.”
Do you view those as individualistic? Or perhaps a little more towards speaking on behalf of a particular group?
That being asked, I don’t disagree with you entirely, or Maria either, you both make very good points and express the desire for fairness, objectivity, and individualism. To you, this situation may be a shade of grey. While you likely see Wade as somewhere in the middle, I think some of his recent posts are staking claim to representation farther to an extreme in support of, and implied representation of a pretty well-defined minority group with an aggressive, and not scientifically supported agenda. This presents a dilemma to many. If Wade is anti-mercury and I am not, does that make me pro-mercury? Nope, that’s a black and white fallacy. But we’re talking about human rights to dignity and respect, and perhaps that’s an area where shades of grey can only offer shades of dignity and respect – that’s not good enough for anyone in my opinion.
“…we’re talking about human rights to dignity and respect”
There is too much anger in this discussion at the moment and IMO no consensus will be reached here.
Catherina,
I’m not sure why you potentially see the topic of human rights as anger, it was intended as food for thought – which is why I used the word “perhaps” which you didn’t include. I’ve had a couple of constructive conversations at Wade’s blog with Ian, and I think he’d agree. While we don’t see eye to eye, we’ve been able to make suggestions to each other that make each other think.
DoC, I wasn’t talking about you, I had Kassiane’s remark in mind (refering to Katie’s mother as “egg donor”) when I wrote about anger.
I feel quite strongly about human rights, I am fully with you on that. Human rights are inseperable from a human, no matter how unneurotypical that human may be – OR (and that is the thing impossible to discuss in this thread IMO) how gruesome that human’s deeds have been.
Ok Catherina,
I guess I could have misunderstood you quoting me and not Kassiane, I can be literal that way.
Redaspie:
I argued simply that it is legitimate and indeed a good idea for campaigners to point out that the pressure many carers of disabled children face will inevitably lead to murders of this nature.
It’s much better to argue and show that the pressure on carers is a largely self-imposed construction. This is evidenced by the differences in how some parents of autistics see their autistic children vs. how parents of Rett girls see their kids, as Autism Diva pointed out. It’s also evidenced by the fact that when most of the spectrum wasn’t diagnosed just a generation ago, we had our problems, yes, but it wasn’t like it is now.
Ian makes a good point about individuals. (I haven’t blogged about the JRC just yet, and I don’t believe I’m knowledgeable about the subject). But it is true that the self-styled “autism community” as a whole, except perhaps for Lenny Schafer, was largely quiet about this. In fairness, Ian did blog about Katie on her memorial day even though he’s not a member of the Hub. Wade did write a post, a “neutral” post if you will.
Hi DoC
I think that to ask for fairness does not imply necesarily to agree totally/ partially. I have asked for fair treatment to Camille/Joseph in occasions when she/he was attacked whereas exchanging ideas with me and we do not think even similar, as you know. I can have slight -very – differences with Wade or Ian but as Ian said
(Ian , please allow me to cite you, talking about us: Wade, him and me)
While I’m sure the three of us do not agree on everything, I doubt that any of us see the need for full agreement, and can respect the views of others even if we do not follow them ourselves.
and this is the point.
For me, I can make it even extensive the idea as much as it is possible to someone who thinks completely different, IF the basic rules of civil exchange of opinions are met. In my personal opinion, when these basic rules are not met, I prefer not to exchange opinions with certain individuals because of this. At this point, we know each other in styles, ideas and behaviors in the web and with private mails to chose with who, when and where to debate.
You said
This presents a dilemma to many. If Wade is anti-mercury and I am not, does that make me pro-mercury? Nope, that’s a black and white fallacy.
Not necessarily. What I do not understand is why my personal ethics ( or the someone else´s ) must be questioned because I present , the most respectful form possible- my ideas about ASD, that are strongly related to all the aspects I mentioned above in my former post.
For me there is no dilemma; each of us is a voice because our personal experience with autism is different. Depending on our style and position, our ideas can be requested for clarification but simplification is not possible.
Why if I am commenting about personal experience- extremely negative about xenobiotics in my son- I automatically am anti mercury and anti vax? Why the request for more research in management of xenobiotics in the autistic biochemistry is considered in advance a move favoring the mercury= autism movement?
All of us try to maintain the discussion general because we try to maintain private the medical information about our children. It happened to me that my personal experience with my (and from other families of my knowledge) son has never been reported in open science or discussed in blogs. When I have proposed to clarify, only very few people has been interested to know WHY I think the way I do. It has been more easy to think, sometimes, perhaps that I am gullible and one of “them”. I am an adult therefore obviously I accept that someone can be not interested why I think the way I do. But is this fair to me or to my son when the same people consider me of awful forms because I am doing biomedical, even when they do not know why, under the advice of who, where and based on what?
You say
But we’re talking about human rights to dignity and respect, and perhaps that’s an area where shades of grey can only offer shades of dignity and respect – that’s not good enough for anyone in my opinion.
We must separate individual thinking in the whole ASD from individual statement about specific points. The fact that many non-link defenders think that vaccines have nothing to do with ASD does not imply negative ethics considerations of my son´s dignity from them. To extrapolate ethic implications from specific statements-or the lack of them- is not fair for them such as is not fair to my son if I do not consider the clinical findings I have and I do not do all I can to help him to become healthy. To extrapolate ethic implication about words are not written is not right for me.
Doc The use of “We” is very general. Each of us chose the “we” you feel you fit. For me I have not found one “we” to belong to with total agreement. I remember a post from Kev (“Enough”) with the use of “We”. I can not feel represented by that “We” – even when I shared certain criticism and ideas- because of my personal circunstances and position in ASD -such as I can not feel represented by the “We” from the Hg poisoning= autism from GR.
But I am not going to question ethics in Kevin for that. He has right to present in his blog his ideas under his personal view. I can mentioning about what I share or not but I have no right to question his motives- and I don’t- because I try to understand/respect as much as I can the position of other people, especially parents of autistic children and especially if they think different, even very different than me. What I am saying is that a blogger like Wade deserves the same consideration.
What I ask for is the same consideration I give to others.
The situation I faced was not information-nothing- from mainstreamed medicine in practice about biomedical treatment, information about what NOT to do from non-link defenders (and some very useful about what to do educationally) and mainstreamed research, and some trustable information about what to search from the link proponents and some rational information about further actions.
Where is the trustable, complete and serious-based on serious science- information about what TO DO with the available information? This is a question that today each parent and each family must find in loneless and under personal research doing finally the most responsible decission that can, finding a doctor/many doctors helping and educational resources with the information available to the family. I have found useful (and also non-useful) information in web/ conferences /books /published research in serious journals about autism from mainstreamed and non-mainstreamed sources and researchers. Again, the field of the greys in different degrees, as it seems to me is a lot of things in Autism, except in the request for dignity, respect, tolerance, safe approaches, safe medicine and reflexion.
For these things there are no greys but only in calm reflexion you can reach an understanding because we are all very emotional charged and susceptible about, all our personal experiences are different, we are all talking about the most precious in the world we have: our children, and many of us have strong personal positions at this point about a lot of medical, scientific, pshycological, sociological, emotional and cognitive aspects in ASD.
MarÃa Luján
Since my name has come up in a few comments…
Stickers in the weeds – If you’re who I think you are, hi, we meet again, I always like reading your thoughts when we cross paths.
You wrote:
“Sticker Wade has time and time again called on either the whole or a certain sector of society to either complete some action he desires or to stop some action or behavior he dislikes. Standing on your soapbox and calling on society to do something immediately transforms that individual into a statesman (gender not implied). We should also keep in mind the context of his statements, that is, the man has purposefully hid his total support of the autism-mercury connection/conspiracy only to slowly leak it out over a period of almost a year.â€
I’m not sure I agree that calling on society to do something transforms one’s comments from representing an individual to representing a group. I’m also not sure that I agree that Wade a) believes that all autism = mercury, or b) has hid his beliefs on this. My take on his writing is that he believes that thimerosal is a significant cause of autism, but I think he stated that he does not believe that it is the only cause. I started reading his blog in September 2005, and if I recall correctly, I knew where he stood at that time.
You wrote:
â€Now here comes the kicker: Wade is a big boy and has taken pains to use his blog to attack individuals (a pathetic diatribe against AutismDiva comes to mind).â€
To be clear, I have no issue with individuals discussing, questioning and/or challenging the written or stated views of other individuals. What I believe is going too far is judging individuals on what they have not written. If someone blogs or comments something then it is fair game for discussion. I would hope that we can all attempt to maintain a standard of respect when discussing, questioning and challenging the views of others, especially when we disagree with them, but we all have an opinion on how well that standard is being maintained by both ourselves and others. Wade and AutismDiva obviously have had an ongoing conflict. I’m not sure that the conflict serves either party’s interests.
In summary, I’m not defending Wade or Ginger’s viewpoints per se in my comments, which are a separate issue. I’m arguing the principle that their words are fair game but the absence of their words is not. If one believes that they should express an opinion on a topic then one is free to either e-mail them or leave a comment on their blogs asking for an opinion, at which point it is up to them to reply as they see fit.
As for Mr Handley, he is free to stop by my blog and comment on what I blogged about his ‘kidnapped souls’ statement and demonstrate the type of person that he is. I have no affiliation with him whatsoever, and will feel free to respond appropriately. I would also use the opportunity to attempt to convey to him the correct spelling of ‘cuckoo’, a word that he has misspelled on occasion.
DoC
While the ‘anger’ comment has now been clarified, you wrote:
â€I’ve had a couple of constructive conversations at Wade’s blog with Ian, and I think he’d agree. While we don’t see eye to eye, we’ve been able to make suggestions to each other that make each other think.â€
Agreed.
On Wade’s ‘We shall not be moved†and “Rolling Snowballs With Friends†posts, I interpreted the ‘we’ as rhetorical flourish rather than as speaking on behalf of a particular group. I could be wrong though. Given that Wade has blogged these words, it is fair game for you to ask him.
As for human rights to dignity and respect, I agree (if I interpret you correctly) that they are black and white, and partial respect and partial dignity are not good enough. Did I suggest differently?
Joseph – Thank You
MarÃa Luján – I rarely comment on your comments because we tend to agree so much. Thank You.
I understand that when Wade started blogging (I wasn’t around) he gave the impression that he was neutral, just trying to see all sides of the issue. Well, the name of the blog should’ve given away his views. Time has made clear where he’s always stood. I think that’s what Stickers in the weeds means.
Here’s a link to Wade’s first post. It doesn’t sound too neutral to me. His second post talks about respect and civility (the lack thereof in the autism debates).
The subtext of the “Injecting Sense” blog has always been clear — that of someone who ‘believes’ that vaccinations cause autism. The author, himself, could not have been more clear in the summation of his ‘Snowballs’ blog post:
“We’re not going away until we find the truth that shall free our children of the obstacles caused by autism. We’re not going away until we find out why our leaders decided it was a good idea to inject poison into our children.”
McGuffin gets points for actually reading what I wrote and understanding.
Joseph (and anyone else who may really care),
I have never claimed to be neutral, only open-minded and interested in what others may say.
“It’s much better to argue and show that the pressure on carers is a largely self-imposed construction. This is evidenced by the differences in how some parents of autistics see their autistic children vs. how parents of Rett girls see their kids, as Autism Diva pointed out. It’s also evidenced by the fact that when most of the spectrum wasn’t diagnosed just a generation ago, we had our problems, yes, but it wasn’t like it is now.”
Oh for heaven’s sake, this is classic ‘blame the victim’ stuff! So the reason carers experience all these problems is because they’ve got a bad attitude. They should just ‘pull their socks up’. I suppose you think that the poor have only themselves to blame also?
Oh for heaven’s sake, this is classic ‘blame the victim’ stuff! So the reason carers experience all these problems is because they’ve got a bad attitude. They should just ‘pull their socks up’.
I don’t see how that could be turned into ‘everyone has only themselves to blame’. I’m arguing a social constructionism point of view. In the third world, there are likely just as many autistic kids as in the first world; except they aren’t diagnosed. The fact that they don’t have a diagnosis, a formal diagnosis of any kind, or a different diagnosis, probably has a significant impact on how parents feel about their kids. People in the third world face economic hardships but I hardly think they constantly whine about lack of special education services. What society thinks of autism is a cultural construction. The ‘despair’ and ‘devastation’ caused by autism is totally culturally constructed. Clearly, not all parents with autistic children complain about lack of services or are ‘devastated’ as much, regardless of the ‘severity’ of the child’s condition.
I suppose you think that the poor have only themselves to blame also?
And evidently, you’re not familiar with my views.
Stuck wrote:
“the point is that blogging is arrogant. If you’re going to splay either yourself, someone else, or an issue open for all to inspect (why, b/c you’re just the guy/gal to do it) then you’re going to get hit with pot shots.”
I can see that blogging may sometimes be arrogant. For some it may also be a desire to be a part of a larger community of those who share similar ideas or interests. One of the write-ups I’ve read on it recently is that it is probably more akin to therapy, albeit with people not always recognizing that it is a ‘permanent’ and very visible therapy.
Is there arrogance in the autism debates? Definitely, in at least some cases, and on all sides. Sometimes though people get involved because the issues they see being discussed are important to them, and they’d like to influence the debate rather than sit quietly by and let others drive the public view of issues that they care about in ways that they oppose.
Yes, one should expect to get hit with pot shots. Anyone with an internet connection who can type can make a comment, and there’s no manners firewall. Having said that, comments are public too, and I think most readers can judge for themselves the character of both bloggers and commenters and weigh the relative value of their words accordingly. I can think of some who feel that they have something important to say, but because they have proven themselves to be total assholes, their words are automatically devalued and/or discounted. What’s the point in that?
Am I arrogant? Maybe. But if I am, I can assure you I get a humbling every Tuesday morning when my sitemeter report arrives in my inbox.
Diva wrote:
“Anything else is off-topic and doesn’t contribute to their winning their omnibus vaccine lawsuit -their big (hidden) focus.”
Diva, can you prove this?
Curious George
Sticker wrote:
“Can you imagine how many less people would have heard about Katie if it weren’t for arrogant bloggers? It’s not always a bad thing.”
Agreed
“Ian, your words are sweet music, as always”
Thank you
/Ian blushing/
My symapthies go to Katie and her father and all the innocents who lost Katie. That said, it seems a little tricky to attack people who didn’t write about it. There remain a lot of people with autism and family members still under strain and worried for the future. I wouldn’t criticize them for seeking the best future for their own and each other in spite of other tragedies.
Popped in through the ABFH’s link to your blog…
Really brilliant post and analysis. Thanks for writing it.
Joseph: I am not familiar with social construction theory so I’m not going to argue with you there. However, the phrase ‘self-imposed construction’ that you used implies to my mind that you believe that parents simply ‘construct’ the problems they face bringing up an autistic child in the context of a society that offers no support. In other words that the issues concerning lack of support for parents are really all in their own heads. Your sneering comment about parents ‘whining’ about lack of special ed servics (they’re not needed then in your view I take it?) really suggests to me you are the type who takes the view that it is up to the individual to just deal with their situation.
But, as you say yourself, I am not generally acquainted with your views. Maybe you’d like to explain yourself so that I can understand where you’re coming from?
I’d be interested in reading Joseph’s reply too (I may not always agree with Joseph but his comments are often interesting and informative reads).
Having said that, given that posts about Katie are not necessarily the best place to discuss views on services, perhaps someone might suggest or provide an alternate venue and provide a link?
I’ll just answer here – I suppose that’s not a problem. You’ll note that I said it’s a ‘largely self-imposed’ construction. Certainly, a kid who tantrums constantly can be problematic and you can’t expect parents to stoically just be unphased by that. Remember, I’m a parent too, the parent of a kid who melts down with some frequency at that, so I can’t be criticized for not knowing what it’s like. What I mean by ‘largely self-imposed’ and ‘whining’ can be observed in the Autism Every Day video. Others have commented on this too. Some parents believe that they ‘must’ do certain things and complain about these things they impose on themselves; such as spending the equivalent of a Harvard education, expensive therapies, rooms full of toys, and so on. The ‘reality’ that says they ‘must’ do these things is a cultural construction. To put it in perspective I like to bring up the third world (something I know a little about). In the third world it wouldn’t even occur to parents to spend the equivalent of a Harvard education because a kid ‘needs’ it. No one would even suggest it, so it’s not an issue. Special education doesn’t really exist in many places, so people don’t even demand it. It’s really because these things are part of the culture that they are expected and demanded. And much of the reason why they are expected and demanded is that autism is culturally constructed as an expensive devastation, a tsunami and so on. Autism is not constructed this way in the third world – in fact, it’s not really constructed at all. So I’m not saying individuals are at fault, and it’s not a really a matter of finding fault, even though we tend to do that (including myself). It’s mostly an issue of how something is cultural constructed, badly or otherwise — and I’ve said that advocacy consists of trying to reconstruct things.
With a different perspective, parents might instead be thankful of how fortunate they are to live in a place where autism is identified and the government provides special education services.
An analogy might be someone who complains about the insufficiency of unemployment payments, whereas in the third world unemployment is the norm, and there are never any payments for being unemployed – they would never be expected or demanded. That’s not to say that it wouldn’t be an improvement for unemployment payments to exist in the third world. What I’m saying is that the cultural influence on perception is significant, and can sometimes result in unfortunate outcomes.
Better late than never, so the saying goes. Let me brush the burs from my trousers and lay on with my two pence worth.
One aspect of this tragedy that seems to recur with monotonous regularity is the cry for “more services”. While I cannot disagree that better support from the community – which includes, I must add, family and friends – can be a tremendous help when raising a disabled child (ask me how I know this), bringing it up in this context begs a question:
Why don’t people with less support kill their disabled children?
I have traveled to many “disadvantaged” parts of the world and I have seen a lot of people who are living lives of want and deprivation beyond the imaginings of most people in the US, UK and Europe. Yet, despite their poverty, these people do not routinely murder their disabled children.
But, to hear the people using this poor girl’s murder as a platform to call for more social services, one might wonder how it is that any disabled child in the so-called “third world” is allowed to live.
To be sure, let us provide the services that these families need – we who live in countries that are wealthy beyond the imaginations of those living in Afghanistan, Bangladesh and Somalia. But let us not use a lack of services (real or perceived) as an excuse for premeditated murder.
As to the question of stress and mental disorders, there are also many people under stress and – believe it or not – even people with mental disorders (including depression) who manage to not kill their disabled children. I suspect that these people might even represent the majority. I would argue (perhaps unsuccessfully) that anyone who murders their own child is “mentally ill”, but that is a diagnosis – not an excuse.
So, let us not mingle the understandable – if somewhat misguided – curiosity to understand why this woman chose to murder her own daughter with a repugnant attempt to find an excuse for her crime. We may never know the “why”, but we can surely know that there was no excuse for it.
Moving on to those “accessories before the fact” who promote the concept of autism as a hopeless morass, a “life worse than death”, and/or “a parent’s worst nightmare” – I find their denigration of an entire group of people, sight unseen, repugnant in the extreme. You may have found your own personal Hell, but please don’t feel the need to drag others down with you.
When you exaggerate (or “selectively emphasize”, if you will) the negative aspects of autism, you create an environment of hopelessness for parents and family members that is not necessary. Take my word for it – the parents don’t need your help to see autism (or any other disability) as a personal disaster.
What they could use is a little help and perspective from parents who have faced the same thing and gotten past the hopelessness. But that wouldn’t help your “cause” much, would it? Hopeless people are easy to prod into anger, and anger is what the autism demagogues need to generate their power. I spit on you and your damned “causes” that feed on fear and anger. You did not kill this girl, but your hands are not as clean as you pretend they are.
Prometheus.
Too many parents of autistic kids try to be their “Saviorsâ€. Through all the great and small hype, no one has been cured of autism. You are setting yourself up for frustration.