• Author: Kev
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84 Responses to “Indefensible And Unprotested”

1. 
   mike stanton
   June 26th, 2006
   08:00:43

   Well said Kev.
   The NAA site currently has a press release defending Andrew Wakefield where the JRC press release should have been.

2. 
   Ms Clark
   June 26th, 2006
   09:26:35

   The Chicago Tribune owes the real autism community an apology.

3. 
   Stephen Drake
   June 26th, 2006
   13:44:27

   Kevin,

   After reading and rereading this, I don’t think there is anything I can add to your analysis. Thank you.

   Later today, I’ll be emailing my usual folks to alert them to your analysis and the URL for this blog entry.

   You nailed it.
   —Stephen

4. 
   Joseph
   June 26th, 2006
   13:52:09

   It is unbelievable the Chicago Tribune would print that. It is unbelievable Autism Every Day is still up, considering the research of Dick Sobsey. If these people want to blame someone other than the murderer, they should have a look in the mirror.

5. 
   Estee
   June 26th, 2006
   13:58:57

   Powerful and effective post.

   Well done.

6. 
   EriK Nanstiel
   June 26th, 2006
   14:20:57

   Kevin, I was waiting for a post like this from you. You’ve officially hijacked the tragedy of Katie’s murder and turned it into a platform for your anti-biomed activism.

   This is a tragedy we ALL share. Not just the neurodiverse.

   Can’t we just agree that Karen McCarron was suffering from a mental illness exacerbated by stress and leave it at that? She was sick, not evil. And the compassion that some have expressed toward the tragedy of her personal breakdown (and the entire family’s loss) should not be attributed to some devaluing of autistic children. I think everyone grieves Katie’s loss…even if they’re not posting about it on their websites.

   But here you are… using the tragedy as a platform, rather than just acknowledging and grieving with those who were touched by it. If Karen McCarron hadn’t been pursuing biomedical interventions, I don’t think you would be exploiting this murder.

   Oh and another thing: THe electric skin shock. You think the neurodiverse are the only ones pissed off by that? You’re wrong. It’s a horrible way to train any child…worse than any amount of hitting or spanking. And we haven’t been silent on that. There’s been outrage expressed by the heads of several autism orgs in the Yahoo groups…and I happen to know they’ve written letters in opposition of this practice.

7. 
   redaspie
   June 26th, 2006
   14:29:08

   “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.”

   Although I agree with you that the press and groups like Autism Speaks are trying to justify the murder of disabled children, I cannot agree with the above statement. Lack of support for parents bringng up children with disabilities is a major issue here. Indeed some parents have ended up with nervous breakdowns due to the pressure, which incidentally, is the fault of the systematic discrimination levied against both disabled people and their carers by a capitalist society that puts profit before people. The argument that parents who ‘can’t cope’ are just bad parents and that it’s their own fault is the argument of the Norman Tebbits of this world, and is on the same level as Bettelheim’s.

8. 
   Stephen Drake
   June 26th, 2006
   14:49:54

   Erik,

   Kevin hasn’t “turned” this into anything.

   A bunch of Karen McCarron’s friends just used this tragedy to boost their own cause – and to boost sympathy for Karen McCarron.

   I cannot and do not assume “everyone” grieves Katie’s death – or feels much for the family. So far, the ANSWERS “support” group have said nothing about the real, long-term nightmare the rest of the McCarron family faces. The same is true of the Autism Society of Illinois. Their official spokesperson has been one of the worst offenders in terms of using this to promote his own agenda. And they sure haven’t repsected the pleas from the McCarron family to stop exploiting the situation – that goes for both groups of “advocates.”
   —Stephen

9. 
   Joseph
   June 26th, 2006
   15:05:08

   Erik:

   Can’t we just agree that Karen McCarron was suffering from a mental illness exacerbated by stress and leave it at that? She was sick, not evil.

   You could claim that about every murderer out there. Murders don’t occur in a vacuum. Yet it is only the murderers of the disabled who receive sympathy such as that Karen McCarron has received. Why is that?

   I know you hope Kev would shut up about this. But Kev is the parent of an autistic girl, whom he accepts and loves as she is. I’m sure he’s shocked that another autistic girl was murdered. And campaigning against the kind of coverage that makes these murders even more likely is a good thing, but for some strange reason you seem to disagree with that.

10. 
    Kristina
    June 26th, 2006
    15:07:56

    Nice work, Kev. I just put up my response on

    http://www.autismvox.com/we-ne.....the-blame/

11. 
    Rose
    June 26th, 2006
    15:13:25

    Too many parents of autistic kids try to be their “Saviors”. Through all the great and small hype, no one has been cured of autism. You are setting yourself up for frustration.

    I don’t want to be my kid’s savior. I want to be his mom.

    Remember when left-handedness was “sinister”, and epileptics were supposedly in need of exorcism? We are hardly any farther with autism.

    I don’t see it as mental illness, either, regardless of the APA’s desire for me to do so, any more than a blind person or a deaf person is mentally ill because they deal with life differently. I wish I had the mental clarity of many autistics who post here.

    Thanks for sticking up for the kids.

12. 
    Catherina
    June 26th, 2006
    15:30:54

    Thank you Redaspie, I was about to make that point. I don’t understand or condone or excuse murder, but I do see despair and exhaustion and the need of practical, every day help for parents of children with extraordinary needs.

13. 
    GMAC
    June 26th, 2006
    15:39:12

    Nice post, Kev. It sickens me to see sympathy for murderers of children, regardless of circumstances, but that’s just me.

    Erik,
    As for Karen McCarron being ‘sick’ you get no argument from me. But I still have no sympathy for her. She is a doctor, for crying out loud. She should have gotten help for herself instead of murdering an innocent child. Why did her ‘sickness’ only manifest itself when her daughter arrived back home? As far as I know, mental illness doesn’t just suddenly happen. If she is sick, she’s been sick for a while.
    Infamous child murderers are nearly always ‘sick’ but we don’t see the misguided sympathy that is streaming forth for these latest killers.
    If you are so personally outraged, why is there no reference to the McCarron tragedy on FAIR’s website? If it’s there, it’s buried, because I looked …

14. 
    redaspie
    June 26th, 2006
    15:53:30

    Thanks for your response, Catherine. I have a problem with some of the reactions to this issue here and other websites, which go beyond arguing that the media and some autism orgs have acted in ways that suggest that murdering autistic kids is somehow ‘OK’ (which I agree is happening) and argue more broadly that such crimes are purely an act of wicked individuals. This kind of argument implies a retributionary response to such events, such as calling for tougher prison sentences or the death penalty, rather than campaigning for the vital social change that will be necessary for autistics, the disabled and other marginalised groups to be fully accomodated in society.

15. 
    Kassiane
    June 26th, 2006
    17:45:41

    Erik,

    You owe Kevin AND the McCarron family an apology.

    It was the antivaxers and the people who resent their autistic children who hijacked Katie’s death to use it as a plank in their platform, as Mr McCarron put it. Not 24 hours after her death out came the sympathy and the “we need more services” crap.

    No.

    You do not do that to the memory of a 3 year old. Especially when the only person who had a problem with her was her hypocritical mother.

    What happened to “Do no harm”? She took that oath, and she broke it. She broke it by committing an unspeakable, premeditated MURDER.

    Murderers don’t deserve sympathy. I don’t care if they’re “sick”...I’ve been bipolar for nearly 20 years now and I’ve managed to not kill anyone. If they’re that damn sick there’s a nice medication called Zyprexa that will slap them down on their ass so they can’t hurt anyone.

    And using a murder to justify the services crap, and the stress of having vaccinated a child who happens to be autistic, is despicable.

    You and your ilk disgust me.

16. 
    mike stanton
    June 26th, 2006
    17:49:24

    Erik
    some autism advocacy groups are using Katie’s murder to further their agenda despite the McCarron family making it clear that they do not want this to happen. These groups are aided and abetted by the journalists who give them a platform. Kev is completely justified when he calls them on this.

    Regarding JRC perhaps it would haver more impact if “[the] outrage expressed by the heads of several autism orgs in the Yahoo groups” was expressed a little more publicly, on their websites perhaps. NAA have pulled their press release from their site. There is nothing on Generation Rescue, Safe Minds, Autism Speaks, and most shameful of all, the Autism Society of America. If Wakefield or Kirby went national on this there wopuld be coast to coast headlines. So let us get Beyond the Silence on this one and Let Me Hear Your Voice.

17. 
    mom-nos
    June 26th, 2006
    18:01:18

    Erik,
    Though Karen McCarron may well have been suffering a mental illness, I suspect that her “stress” may have been exacerbated by the messages about life with autism that seem to be increasingly pervasive in our culture – bleak messages of despair and hopelessness, of one painful, fruitless day after another. I wish that messages from other “autism parents” who, like me, have moments of struggle embedded in lifetimes of joy and love and celebration got something close to equal billing. Perhaps if Karen McCarron had been exposed to a different vision of what her life and Katie’s could be, Katie might still be here to enjoy it.

18. 
    EriK Nanstiel
    June 26th, 2006
    18:30:38

    GMAC: “If you are so personally outraged, why is there no reference to the McCarron tragedy on FAIR’s website? If it’s there, it’s buried, because I looked …”

    GMAC, FAIR’s website content is decided by the board of directors. We decided long ago that we would focus on collecting expert testimony on primarily biomedical & political issues concerning the autism community. We simply don’t cover all these tragedies, because so many other websites and organizations do.

    Joseph: “I know you hope Kev would shut up about this. But Kev is the parent of an autistic girl, whom he accepts and loves as she is. I’m sure he’s shocked that another autistic girl was murdered. And campaigning against the kind of coverage that makes these murders even more likely is a good thing, but for some strange reason you seem to disagree with that.”

    Joseph, I am the parent of an autistic girl, too. I was pained to hear of Katie’s murder…especially since I was familiar with Karen after having had phone conversations with her (prior) and traded a few emails. I am shocked beyond belief. She never appeared to be someone who resented her child, as some folks consider us parents who are trying to cure their children. I am convinced she was mentally ill and majorly stressed. Let’s face it. Some autistic children are so troubled by issues like irritable bowels, etc. and are very uncomfortable…so they act out and cause their parents stress. I’m no stranger to this. Add this stress to someone who is mentally or emotionally unbalanced and you can get a disaster.

    I hate the sin, but not the sinner. That’s the christian in me, not the biomed activist.

    I don’t think that when the media covers the challenges parents face with caring for their autistic children creates a greater likelihood for these kinds of murders. I think that’s ridiculous. There is still a great ignorance, at large, about what autism is and how it affects families. And there’s a great need for services that isn’t being met. I’m not blaming lack of services for Katie’s death, no. Just saying that it’s not a sin for a parent to admit to the press that caring for their kids can be tough…both emotionally and financially.

    There’s an impression I get from many of you that biomed parents don’t love their children as they are. Ridiculous. I love my child whether she recovers or not. But OUT OF LOVE, I do my best to give her the best future possible. And if that means healing her bowels, removing toxic metals and supplementing nutrient deficiencies…well, by golly, what could be wrong with that?

    [edited Lupron sales pitch]

19. 
    Kev
    June 26th, 2006
    18:34:35

    I’m saddened by your response Erik.

    As I said at the top of this post, the McCarron’s and the Leitch’s have become close over the last few weeks. There is no way I would attempt to usurp Katie’s memory. Megan has become an ‘adopted’ granddaughter to Mike and Gail – a fact that we take pride and joy in. Insulting the memory of Katie would be akin to insulting my own children.

    You state that there was an outcry regarding JRC and the murder of Katie McCarron from your friends. Where? I see nothing. Should I look forward to a public campaign from FAIR Media? Or will you be too busy filming the Geier’s?

    You state that it is better to realise Katie’s mum was mentally ill and leave it at that. I don’t believe she was mentally ill. I believe she had bought into a pack of false promises and when they didn’t turn out to her satisfaction she broke her daughter the way a petulant child breaks a toy she’s had enough of.

    Catherinea (and others) – most certainly there is a distinct lack of services for parents of disabled kids. That is criminal and needs to be addressed. However, that fact should never be used to even hint that it is ‘understandable’ to murder one’s kids. It is also not the issue. As Stephen rightly states – this is a child murder. The fact that this child was autistic should not be used to ‘educate’ or ‘highlight’ anything. There should be no positives sought in the aftermath of the murder of a child.

20. 
    ebohlman
    June 26th, 2006
    19:13:37

    Part of the reason that high-profile “advocacy” groups aren’t saying a lot about the JRC may be that Matthew Israel has a reputation for litigiousness.

21. 
    mike stanton
    June 26th, 2006
    19:35:38

    Erik
    would these results be before and after the research protocol has completed in an IRB approved, double blind placebo controlled study using ADOS to assess the children and ADI-R for the parents, along with reliability ratings for a selection of the interviews carried out by independent trained observers?

    Sorry, forget about the IRB. It was only set up after the study and packed with Geiers and cronies. And the study failed to mention that the children were getting Lupron. Double blind? How could it be if your insurance companies are paying the full whack?

    In other words there are no results apart from the testimony of people who trust the Geiers and are prepared to lie to their insurance companies to get on the protocol.

    You better hurry over to Neurodiversity.com and check out episode three of Serious Misrepresentations.

22. 
    Kev
    June 26th, 2006
    20:31:03

    “We simply don’t cover all these tragedies, because so many other websites and organizations do.”

    Really? Who? Where? When?

    “I am convinced she was mentally ill and majorly stressed. Let’s face it. Some autistic children are so troubled by issues like irritable bowels, etc. and are very uncomfortable…so they act out and cause their parents stress. I’m no stranger to this. Add this stress to someone who is mentally or emotionally unbalanced and you can get a disaster.”

    Yeah, its those damn irritable bowels. Your conjecture on Katie’s killers state of mind id just that – conjecture. And in reality it alters nothing.

    “I don’t think that when the media covers the challenges parents face with caring for their autistic children creates a greater likelihood for these kinds of murders. I think that’s ridiculous.”

    And yet the study referenced above proves you wrong.

    “There is still a great ignorance, at large, about what autism is and how it affects families. And there’s a great need for services that isn’t being met. I’m not blaming lack of services for Katie’s death, no. Just saying that it’s not a sin for a parent to admit to the press that caring for their kids can be tough…both emotionally and financially.”

    Of course its not – but the association with that debate with this debate is wrong. It creates the misleading impression that these kind of things are ‘understandable’.

    “There’s an impression I get from many of you that biomed parents don’t love their children as they are. Ridiculous. I love my child whether she recovers or not.”

    Find me one statement from me that bears that out. Just one. Its quite clear you love your child but loving ones child is not an instant absolvement of wrong doing.

23. 
    EriK Nanstiel
    June 26th, 2006
    20:33:43

    Kev: “You state that it is better to realise Katie’s mum was mentally ill and leave it at that. I don’t believe she was mentally ill. I believe she had bought into a pack of false promises and when they didn’t turn out to her satisfaction she broke her daughter the way a petulant child breaks a toy she’s had enough of.”

    That is the most callous and ignorant thing I have ever heard you say, Kevin. You’re saying a perfectly rational human being can be programmed to kill because of the promises of biomedical intervention? Are you absolutely insane???

    That implies that someone like myself is capable of killing my daughter in a fit of rage if I don’t like the progress she’s making. Wow. I wouldn’t have thought you were capable of that line of thought, until now.

    She was mentally ill, and sent over the edge from stress. Saying what you did could also equate to homosexuals. A straight man could in your view become a homosexual simply because he’s subjected to a lot of gay porn and pride parades! Or too much exercise with Richard Simmons. Rubbish.

    Your view assumes she didn’t love her daughter. It assumes that biomed parents don’t love their children and could turn on them at any time… that mental illness isn’t a factor and doesn’t matter.

    Wow. I truly have been wasting my time on this blog.

24. 
    Kev
    June 26th, 2006
    20:54:59

    “That is the most callous and ignorant thing I have ever heard you say, Kevin. You’re saying a perfectly rational human being can be programmed to kill because of the promises of biomedical intervention? Are you absolutely insane???”

    Programmed? No. I’m saying that for some people, the ‘promise’ of such quackery overwhelms reality.

    “That implies that someone like myself is capable of killing my daughter in a fit of rage if I don’t like the progress she’s making. Wow. I wouldn’t have thought you were capable of that line of thought, until now.”

    What Katie’s mum did was no fit of rage. It was a cool, calm murder. A few days after Katie’s murder, the following comment appeared on ABFH’s blog from Generation Rescue Rescue Angel and your friend John Best:

    “If he dies young [referring to his son], I will rejoice for him that he has excaped the nightmare that was his life.”

    That’s the cheapness of life according to a Rescue Angel Erik. You need to take a long hard look at the sort of attitudes your Christian attitude is absolving.

    “She was mentally ill, and sent over the edge from stress. “

    Rubbish. She killed her daughter at her parents house, drove her back to her house, carried her body up the stairs to bed past her family, came back down, drove off to get some ice-cream as an excuse to dump the plastic bag she’d smothered Katie with, returned home and then claimed Katie had died of natural causes. Thats not mental illness Erik, that’s a cold, calculated act.

    You should also know that for the past 20 months, Karen McCarron had had very little to do with her daughter as she was cared for by her dad and her grandmother. How much stress can she possibly have accumulated in the short span of time she was reunited with her daughter?

    “Saying what you did could also equate to homosexuals. A straight man could in your view become a homosexual simply because he’s subjected to a lot of gay porn and pride parades!”

    You’ll have to explain that one to me Erik. I have no idea what you’re talking about.

    “Your view assumes she didn’t love her daughter.”

    No.

    “It assumes that biomed parents don’t love their children and could turn on them at any time… “

    No.

    “that mental illness isn’t a factor and doesn’t matter.”

    That’s true.

    Its clear to me that you’ve not read anything written by Mike McCarron, Katie’s grandpa, about Katie’s murder. I really think you should.

    Mike speaks here, here, here, here and in several places on this blog.

    Mike’s opinions on what his own granddaughter was like and how she dies are a lot more authentic than yours Erik. Try and show a bit of compassion for the dead child here’.

25. 
    redaspie
    June 26th, 2006
    21:23:37

    “...most certainly there is a distinct lack of services for parents of disabled kids. That is criminal and needs to be addressed. However, that fact should never be used to even hint that it is ‘understandable’ to murder one’s kids. It is also not the issue. As Stephen rightly states – this is a child murder. The fact that this child was autistic should not be used to ‘educate’ or ‘highlight’ anything.”

    I simply do not agree. To argue this is to argue that we should simply deny objective reality because it is inconvenient. It is simply a fact that the continued denial of support to carers of disabled children, when added to the systematic discrimination prevalant throughout society, and the dehumanising ideologies pushed by Autism Speaks and others, makes the murders of disabled children much more likely. It is essential that this is highlighted. Yes there may be a risk of ths making such murders more ‘acceptable’, but on the other hand the institution of the services that disabled children and their parents need and deserve could cause such things to cease to occur altogether.

26. 
    Stephen Drake
    June 26th, 2006
    21:59:34

    “It is simply a fact that the continued denial of support to carers of disabled children, when added to the systematic discrimination prevalant throughout society, and the dehumanising ideologies pushed by Autism Speaks and others, makes the murders of disabled children much more likely. It is essential that this is highlighted. Yes there may be a risk of ths making such murders more ‘acceptable’, but on the other hand the institution of the services that disabled children and their parents need and deserve could cause such things to cease to occur altogether.”

    I don’t even know where to begin with this. What you present as “simply a fact” isn’t at all. There’s never been a tie-in between crappy services and the murders of disabled people by parents, caregivers, etc. It’s not even an issue in the case of Katie McCarron’s death. The family had resources and they were using them – and happy to do so, with one notable exception.

    There’s been a lot of this kind of coverage in Canada, especially after the highly-publicized murder of Tracy Latimer by her father. None of the sympathy extended to the “plight” of families resulted in an increase in services. It has resulted in a much higher acceptance of the murder of children with disabilities. After the ten-year sentence given to Robert Latimer, prosecutors have seemed reluctant to court public outrage, so they’ve been going very easy on parents who kill disabled kids.

    One “important” policy discussion has resulted in Canada, though: the promotion of a “compassionate homicide” statute that would lower the penalties for the murders of old, ill and disabled people murdered by family members for “non-malicious” reasons.

27. 
    Kev
    June 26th, 2006
    22:05:50

    “Yes there may be a risk of ths making such murders more ‘acceptable’, but on the other hand the institution of the services that disabled children and their parents need and deserve could cause such things to cease to occur altogether.”

    There’s documented, tangible risk of making these kind of murders acceptable. If you want to compare that established finding to the ‘maybe’ that associating murder with lack of services ‘might’ result in better services then I have to tell you that I think that’s a very dangerous moral judgement and the life of a child is not a currency I’m prepared to barter in.

28. 
    Amanda
    June 26th, 2006
    22:19:56

    Exactly. I agree with Stephen’s press release, also, having read the research as well, that claiming the “lack of service” thing is the context here is BS. It isn’t backed up by the research, it isn’t backed up by what happens in reality. In reality, there’s a far far broader context that all these “Oh you people must be totally ignoring that we live in a society and claiming these acts are purely individual and purely evil blah blah blah” people are not seeing. You’re saying the reverse of reality, you’re claiming to be “looking at the context” while totally not looking at the real world in which this kind of coverage inevitably results in not more services, but more murders, and more acceptance of such murders. But if we say that, we must be viewing things as individuals independent of society. Yeah… right.

29. 
    Joseph
    June 26th, 2006
    22:29:58

    It is simply a fact that the continued denial of support to carers of disabled children, when added to the systematic discrimination prevalant throughout society, and the dehumanising ideologies pushed by Autism Speaks and others, makes the murders of disabled children much more likely.

    I agree with the last part, but not the first. If the bit about ‘denial’ of services (not sure ‘denial’ is the right word) is true, then parents of disabled children in the third world would be killing (and complaining about) their kids all the time. I’m not aware this is the case – and I know what I’m talking about FWIW. This devaluing of people who are different is really just a phenomenon of modernity.

30. 
    MAría Luján Ferreira
    June 27th, 2006
    00:19:54

    Hi Kevin

    Wade blogged about Katie Mc Carron’s murder.
    Please look at
    Monday, May 22, 2006
    A PLEA FOR RESTRAINT
    in Wade´s blog.

    María Luján

31. 
    McGuffin
    June 27th, 2006
    01:45:23

    Erik: You appear to be a lost soul. So, please, stop trying to take other people with you on your dark ride into quackdom. It’s quite clear the Geier’s have their errand boy firmly in place. STOP and THINK about what you are doing, Erik, and who you are influencing. There are certain things none of us can ever take back. AND PLEASE … take your daughter to a pediatric endo for a second opinion!

32. 
    Valerie Brew-Parrish
    June 27th, 2006
    01:49:01

    Disabledocide is alive and well in Illinois and the world. Kevin obviously understands that blaming the innocent victims is wrong. My family is appalled at the lack of sympathy over the killing of Katie McCarron. Her physician mother really didn’t raise her. Katie was with her devoted father and paternal grandparents for 20 months out of state receiving services. The Autism Society of IL and ANSWERS support group are exploiting Katie’s murder for their own platforms. Lack of services and horrors of raising a child with a disability is their hackneyed mantra. These groups are putting other children with disabilities at risk. Let us not forget little 11 month old Daniel Cullen who inadvertantly pulled out his trach. Now the Dallas Hospital wants to end his misery and his Mom was given two weeks to find a facility to take him. In Dec. 2005, five year old Dylan Walborn was deliberately starved to death because he had Cerebral Palsy. It took the little guy 24 days to die and the Denver newspaper chronicled every facet of his death. In stead of giving sympathy to parents and know-it-all bioethicists that murder kids with disabilities, society should take every precaution and measure to protect, love, and accept all of us with disabilities.

33. 
    McGuffin
    June 27th, 2006
    01:49:44

    Maria Lujan: As far as Wade’s blog post, it came across to me as self-serving and passive-aggressive .

34. 
    b. sharp
    June 27th, 2006
    01:58:26

    This devaluing of people who are different is really just a phenomenon of modernity.

    Not entirely, I’m afraid. If I am not mistaken, it wasn’t unusual for people some ancient cultures to abandon disabled babies in woods, or even outright killing. In some cultures you were considered obligated to end your life if you went blind, or obtained some other type of disability. It wasn’t exactly better for everyone back then.

35. 
    David N. Andrews BA-status, PgCertSpEd (pending)
    June 27th, 2006
    02:07:10

    ebohlman: “Part of the reason that high-profile “advocacy” groups aren’t saying a lot about the JRC may be that Matthew Israel has a reputation for litigiousness.”

    Yes, and his having friends in high places (and no, I don’t mean any sort of god…. no god that I could call a god would wish to befriend that soul-less piece of shite).

36. 
    I'm a fan, gimme a sticker
    June 27th, 2006
    02:09:31

    Wade’s blog, you can’t be serious. You’re talking about the arrogant windbag who calls for more research, who calls for understanding and civility, and who calls for restraint. Yet, the funny thing is that he’s pretty much exhibited none of those things himself. I love people who hide their true nature in an effort to plus up blog numbers and to cull adoring sticker-wearing fans.

    You’re not wearing one of his stickers right now, are you? I hear there’s a ton left over from Autism 1, in fact the Geiers have a whole roll of them in their Lupron bathroom. John Best Jr. uses rolls of them to TP the houses of those who he thinks should get electric shock therapy.

    Great stuff. Great people. Great advice. Yeah!

37. 
    Call me Piper
    June 27th, 2006
    02:50:38

    So long as Erik Nanstiel is injecting his little girl with Lupron, so long as he actively encourages other parents to do the same (and he is doing that on autism lists currently as well with the evil Geier videos with their tales of mythical “testosterone sheets”) he has no moral authority, no right to speak about ethics or religion from some imagined superiority.

    You need to clean up your act, Erik. You need to stop injecting your daughter with toxic drugs before she is permanently harmed, if she hasn’t been already. You need to take her to a pediatric endocrinologist and get a good evaluation. You need to stop lying to your insurance company and telling them that she has precocious puberty. You need to take down the lying Geier videos and stop shilling for the vulture boys.

38. 
    redaspie
    June 27th, 2006
    11:24:15

    I really don’t have time to get into a protracted debate about this, as I simply lack time. I’ll just make a few general points; the idea being put about that there is no connection between the lack of support given to carers and the murders of disabled children by their carers simply defies common sense – never mind ‘research’. And I’m sure that if I had the time I could find some research which demonstrates such a link. In fact I have a friend who might know – more on this later. But the idea that in a sitution where parents are placed under the pressure that they are – having to care for a disabled child and meet all their needs frequently long after the majority of children would have achieved a level of independence, with the expectation of having to continue to do so for the rest of your life with next to no outside support, to face constant barriers at every turn including denial of access to education ( something like a quarter of all autistic kids are excluded from the school system in the UK) – that there are not going to be some who finally snap is just ridiculous. The recent well-documented case of the woman who jumped off the bridge with her son is one example of this.

    Speaking of research, I’d love to get a hold of Dick Sobsey’s research in question rather than just reading assertions about it in a Not Dead Yet press release I’d be very grateful. Not that I believe that one research project can conclusively prove anything on its own.

39. 
    Kev
    June 27th, 2006
    12:13:49

    “the idea being put about that there is no connection between the lack of support given to carers and the murders of disabled children by their carers simply defies common sense”

    You’re not reading what we’re writing. There may well be a link. But by contrast, there definitely seems to be a link between negative press and murder.

    The issue is not the link itself. The issue is that its being made in such a way at such a time. They way these articles are phrased is one which would lead people to believe that its ‘acceptable’ or ‘understandable’ to murder kids.

    This murder needs to be portrayed as what it is – a murder. Anything else smacks of finding excuses.

40. 
    Mike McCarron
    June 27th, 2006
    13:44:52

    Kevin,

    To say our families are “close” is an understatement, we are “one”. When I first met you and Megan I saw pure and uncut Love. Our families continue to share our love. In Meg we have another grand-daughter, that makes us wonderfully happy. One day we will hug.

    I also see from the messages above that you enjoy the lively art of conversation. I am very proud of you; sound logic and firm belief are very rare commodities these days.

    Most of the debate is about different plans of treatment or processes for improvement and yes, there are spirited disagreements. However, the vast majority of people who visit your site seem to put the child’s welfare before all else.

    But 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.

41. 
    redaspie
    June 27th, 2006
    14:01:44

    Kev, I don’t think people are reading what I’m writing. 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. The link exists and should be pointed out. I am not suggesting that there is no link between sympathetic portrayals of parents who kill their disabled children and an increased likelihood of similar murders occuring. Nor am I suggesting that, for instance, lack of respite care leads directly to parents killing their children. People are seeing such basic issues as separate from wider issues of discrimination against disabled kids and their parents, when they are in fact the same thing and really shouldn’t be divided up in the way people are doing.

    And as I’ve already said I have not seen anything apart from people’s assertions to support the idea that simply highlighting the issue, in and of itself, directly leads to more children dying. I think that it is an entirely speculative proposition and not a basis on which to forbid campaigners from even mentioning that the pressure carers are under makes the murder of disabled kids under their care more likely.

42. 
    Kev
    June 27th, 2006
    14:02:25

    Thank you Mike. ‘close’ is indeed an understatement.

43. 
    Catherina
    June 27th, 2006
    14:31:12

    I totally agree Red Aspie! One of the moms in my son’s classroom has an older child who is severely brain damaged and the hoops through which she has to jump to get the most basic help, especially now that her child turned 16 and is officially an “adult” are just ridiculous. I don’t know how she managed to stay sane over the years and certainly, from what she tells me of other parents with older children with similar 24/7 needs, there are enough who break one way or another.

    This does not justify murder, this also does not mean that these parents love their children any less, but they do need more support than they are getting.

44. 
    Kev
    June 27th, 2006
    14:48:14

    The issue of support is unquestionable. Parenting someone with special needs is difficult. I’m not ever going to say its not as I’m someone who does it myself. More support is needed.

    However as Mike – Katie’s grandpa – says:

    “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”

    Katie’s murderer was not Katie’s primary care giver. Her ‘stress’ is in my opinion an entire fabrication. To try and associate Katie’s murder with stress suffered as a result of parenting kids with special needs is distasteful, inaccurate and morally questionable.

45. 
    Catherina
    June 27th, 2006
    15:12:04

    Ah, this is something I forgot earlier. Now, I must say, I know very little about Katie, her family, her mother and what the reasons were that Katie and her dad went to live somewhere else.

    It may be that Katie’s mother really felt relief when the day to day care of Katie was taken off her hands.

    Or maybe not.

    Maybe it was exactly that what drove her over the edge and estranged her enough from her child to be able to murder her! How can you (per default) assume that being separated from your child does NOT cause suffering in a mother?

    Again, I am not trying to excuse or justify what she has done, I am not saying that any parent who is under stress and does not get enough help in the care for his/her high need child should get a carte blanche to murder the child. But I still think discussions about care and support structures for children with special needs is very, very urgent, so that parents don’t fall for the “healing” crowd and manage to adopt the “if it ain’t broken, don’t fix it” attitude.

46. 
    Kev
    June 27th, 2006
    15:28:24

    I appreciate the ideas behind your questions Catherina and I agree there’s an urgent need to discuss services (or the lack thereof) I just think that attaching that debate to this debate is not the right thing to do.

    Its kind of (to me) like saying ‘discuss poor services with us or we may kill our kids!’ . Its a debate that has merit on its own.

47. 
    Catherina
    June 27th, 2006
    15:50:48

    Ok, I understand that! And I understand that Katie’s death should not be used one way or another.

48. 
    Joe McCarron
    June 27th, 2006
    18:24:40

    I want to say that I am learning allot from reading this blog and the different links and opinions. Amanda, I loved reading through your website.

    I won’t speak to all the issues as I don’t have all the answers. (Although I am getting a much better sense of things as I read more.) Moreover, I am limitting what I say publicly until after the trial.
    However there is something I do know, and feel compelled to say.

    Eric Said:

    “Can’t we just agree that Karen McCarron was suffering from a mental illness exacerbated by stress and leave it at that? She was sick, not evil.”

    Eric
    I’m sorry I can’t agree to that. I want you to think about these questions:
    Why do you want us to agree to this? Are you convinced you know this based on a few phone calls and e-mails with Karen? If you know you don’t have enough information, why then do you want that agreement?

    Before this, I did not want to believe that people could be evil. I still don’t “want” to believe it. Nevertheless, Katie’s murder has caused reality to come pounding on the door so loudly I can’t ignore it. Try as I might, I now know too much to go back to that way of thinking. Being a Christian does not require you to pretend evil does not exist.

    “Mental illness” did not cause Karen to murder Katie. I think its important that you and others know this.

    As to Karen’s motives, I won’t speak to that until the trial.

    -Katie’s Uncle Joe

49. 
    Aspie
    June 27th, 2006
    20:13:45

    wrong thread ‘aspie’.

    Kev.

50. 
    Ian Parker
    June 27th, 2006
    20:56:09

    Kev wrote:

    “Adventures in Autism? Nothing

    Injecting Sense? Nothing”

    /sarcasm

    Oops, apologies Kev, I must have missed the recent e-mails providing me with the required subject posting list for my blog. I’ve been having e-mail space issues recently, so maybe that’s why they didn’t arrive. Perhaps you could re-send?

    I did post on the murder of Katie McCarron and ‘Autism Every Day’, and even managed to tie the thoughts together in an overall summation of views in which I expressed that “I do not believe that there is anything wrong with autistic thought per se, and I am not seeking to cure my daughter of this type of thought.” But I guess I missed the mandatory post requirement on the Judge Rotenberg Centre.

    Does this mean I only get a 67%? Are we being graded on a curve? Can I get part marks for linking the two views in the third post I cited? I’m used to being in the 98th to 99th percentile (and yes I know the difference between percent and percentile), so as you can imagine, this recent failure is a crushing disappointment to me. Perhaps I can take a make-up exam to boost my marks?

    Just to be a snitch though (maybe I can lower others’ marks to raise my percentile standing), there are a few others who, as far as I can tell, also did not post on the JRC in their blogs:

    29 Marbles
    Autism Diva
    DoC – Autism Street
    Not Mercury
    Zilari – processing in parts
    Estee – Joy of Autism
    Bartholomew Cubbins

    Maybe we could all do a Saturday morning detention? Perhaps like The Breakfast Club? Can I be Emilio? (I usually get the Anthony Michael Hall role – no red hair though – and would like to try something different.)

    /

    For the record, I don’t know anything about the JRC, except what I have read on your blog. I do not support the use of electric shock or any aversives on autistic children or adults or any other children or adults. I sincerely believe that all of the others listed, plus Wade and Ginger, share these same views. (In Ginger’s case I’d measure the life expectancy of anyone using aversives on her son in seconds.) If I were to blog on this I have nothing more than that to say. Given limited time, I prefer to write about things that (I think) I have a clue about, rather than follow someone else’s agenda to be politically (autistically?) correct.

    I have no issue with judging people on their freely expressed words. But judging people on what they haven’t said, especially in the highly charged community of those connected through autism, is starting to get a bit Orwellian.

51. 
    Kev
    June 27th, 2006
    21:28:02

    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.

52. 
    Ian Parker
    June 27th, 2006
    22:17:13

    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.

53. 
    Aspie
    June 27th, 2006
    22:25:24

    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

54. 
    Bartholomew Cubbins
    June 27th, 2006
    23:08:44

    “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.

55. 
    Kev
    June 27th, 2006
    23:16:28

    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.

56. 
    Ian Parker
    June 28th, 2006
    00:56:00

    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.

57. 
    Kassiane
    June 28th, 2006
    01:09:43

    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.

58. 
    MAría Luján Ferreira
    June 28th, 2006
    01:37:16

    Hi Kevin
    You said
    “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.

    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.”

    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 “sides”, 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
    María Luján

59. 
    Ms Clark
    June 28th, 2006
    05:44:31

    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 .

60. 
    Dad Of Cameron
    June 28th, 2006
    07:01:41

    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.

61. 
    Catherina
    June 28th, 2006
    13:33:18

    “...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.

62. 
    Dad Of Cameron
    June 28th, 2006
    16:13:55

    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.

63. 
    Catherina
    June 28th, 2006
    17:23:41

    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.

64. 
    Dad Of Cameron
    June 28th, 2006
    17:58:30

    Ok Catherina,
    I guess I could have misunderstood you quoting me and not Kassiane, I can be literal that way.

65. 
    Joseph
    June 28th, 2006
    19:52:30

    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.

66. 
    Joseph
    June 28th, 2006
    20:10:08

    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.

67. 
    MAría Luján Ferreira
    June 28th, 2006
    22:15:42

    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.

    María Luján

68. 
    Ian Parker
    June 28th, 2006
    23:33:18

    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.”

    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:

    ”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).”

    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:

    ”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.”

    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

    María Luján – I rarely comment on your comments because we tend to agree so much. Thank You.

69. 
    Joseph
    June 29th, 2006
    00:05:53

    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.

70. 
    Ian Parker
    June 29th, 2006
    00:17:36

    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).

71. 
    McGuffin
    June 29th, 2006
    00:26:43

    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.”

72. 
    Wade Rankin
    June 29th, 2006
    01:51:17

    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.

73. 
    redaspie
    June 29th, 2006
    13:57:22

    “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?

74. 
    Joseph
    June 29th, 2006
    18:16:26

    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.

75. 
    Ian Parker
    June 29th, 2006
    20:31:37

    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.

76. 
    Curious George
    June 29th, 2006
    22:04:19

    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

77. 
    Ian Parker
    June 29th, 2006
    23:42:59

    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/

78. 
    Doug
    June 30th, 2006
    17:33:12

    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.

79. 
    Attila the Mom
    July 2nd, 2006
    17:51:08

    Popped in through the ABFH’s link to your blog…

    Really brilliant post and analysis. Thanks for writing it.

80. 
    redaspie
    July 3rd, 2006
    00:47:34

    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?

81. 
    Ian Parker
    July 3rd, 2006
    18:03:49

    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?

82. 
    Joseph
    July 4th, 2006
    05:10:36

    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.

83. 
    Prometheus
    July 5th, 2006
    23:45:59

    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.

84. 
    brown
    July 25th, 2006
    11:07:32

    Too many parents of autistic kids try to be their “Saviors”. Through all the great and small hype, no one has been cured of autism. You are setting yourself up for frustration.

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