More non-autism blogs critical of the vaccine-autism story

23 Jul

There is a substantial public relations push to get the vaccines-cause-autism idea in front of the public’s eye. High end, expensive PR firms have been hired, and, let’s face it, they got a big free boost from Jenny McCarthy and Oprah.

The cost to public health is obvious. Declining vaccination rates have already had a big impact in the UK, and the US has also seen a resurgence of measles and other diseases.

But, there is another cost. As noted recently on this blog, Jenny McCarthy has already become the butt of comic strip jokes for her position on vaccines. Many people are likely to not realize that Jenny McCarthy speaks for a minority (loud though they may be) of the autism community. My kid relies on on the public’s perception of “the autism community”. When people like Ms. McCarthy damage that perception, there is a very real cost to my kid, my family.

It isn’t new for bloggers outside of autism to be critical of Jenny McCarthy and others in the vaccines-cause-autism groups. Most notably, Orac has taken Ms. McCarthy to task a number of times in what is one of the most well read medical blogs, “Respectful Insolence“. Likewise, Science Based Medicine has had a number of bloggers take on the pseudoscience and dangerous opinions of the vaccines-cause-autism crowd. But, one could argue that they are medical blogs and, thus, more connected to vaccines, public health and autism than your general blogger.

But, the past week has seen a couple more prominent blogs

Discover Magazine’s Bad Astronomy has come out against the dangerous pseudoscience with Jenny McCarthy: spreading more dangerous misinformation. If the title isn’t clear enough, here’s the first paragraph:

If you haven’t had your quota of shockingly wrong medical advice for the year yet, try watching this video by Dr. Jenny McCarthy, as she manages to squeeze about a metric ton of misinformation into a two-ounce package.

Note: “try watching this video” is a link in the Bad Astronomy blog piece. A link to the video hosted by Generation Rescue. For some reason (bad publicity? Too much bandwidth?) GR has pulled the video from their site.

While I cringe at yet more damage to the public perception of the “autism community”, I applaud Bad Astronomy for taking on Ms. McCarthy. It isn’t Bad Astronomy’s fault if “the community” looks bad. It is squarely at the feet of Jenny McCarthy.

Interestingly, Mr. Kent Heckenlively of the “Age of Autism” blog decided to comment at Bad Astronomy. Even more interesting, Mr. Heckenlively was forced to retreat to his own blog to continue the discussion where his claims wouldn’t be exposed to actual criticism.

But, once again, one could say it is expected that a science blog like Bad Astronomy would take on Jenny McCarthy. The do-vaccines-cause-autism question is a science question after all.

Enter Mother Jones. MJ blogger Sonja Sharp posted, Breaking: Vaccines Still Don’t Cause Autism.

Mother Jones is not a science or medicine based publication. In fact, as Ms. Sharp states:

We love a good conspiracy as much as the next investigative magazine—especially one that involves Big Pharma, the FDA, and the CDC. But as we’ve extensively reported here, the vaccines = autism meme might just be the most damaging medical myth of the decade. Not only is it based on false “science” that’s tearing apart the families of sick children, it’s unintentionally sickening thousands of others.

While the vaccine/autism story isn’t completely new to Mother Jones (for example, see Arthur Allen’s piece, Vaccine Skeptics vs. Your Kids)), Jenny McCarthy et al. should take a big hint when they can’t even get sympathy from MJ.

This blog piece obviously hit a nerve. Take a look at the comments. Second comment: David Kirby. David Kirby is, for better or worse, one of the most read bloggers talking about autism. I can already feel the heat from those who will (with good cause) tell me that David Kirby doesn’t really talk about autism. Point well taken. That said, Mr. Kirby doesn’t even participate in the comments of his own blog. Why suddenly break the tradition with Mother Jones?

I expect Mr. Kirby to actually partake in the discussion beyond his one comment. I may be forced to take a page from Mr. Heckenlively’s book and take the conversation here.

27 Responses to “More non-autism blogs critical of the vaccine-autism story”

  1. passionlessdrone July 24, 2009 at 00:10 #

    Hi Sullivan –

    Many people are likely to not realize that Jenny McCarthy speaks for a minority (loud though they may be) of the autism community. My kid relies on on the public’s perception of “the autism community”. When people like Ms. McCarthy damage that perception, there is a very real cost to my kid, my family.

    When someone says the same thing about, say, Ari Nee’man, there is inevitably a demand that someone produce documentation that the ND community is trying to speak for everyone with autism.

    The frailty of broad categorizations becomes clear once you begin interacting with a range of people that might bear such a label. With all this awareness and cultural recognition we seem to be experiencing, the public is going to be running into enough people with autism out soon enough that they will come to the conclusion that the autism community is comprised of people of all stripes and shades. Some they will agree with, some they don’t.

    – pD

    Also, I don’t seem to be getting any emails despite the checkbox. Has anyone else gotten email notifications to follow ups on any threads?

  2. Sullivan July 24, 2009 at 00:22 #

    pD-

    I am getting email notifications, but I am obviously a different case on this blog.

    you are shown as subscribed to
    Autism research funding: who is paying and how much?
    More non-autism blogs critical of the vaccine-autism story

    Let me know if you get notification of this.

  3. Sullivan July 24, 2009 at 00:42 #

    pD-

    No “community” is a single unit. However, many people don’t think that at first. I have, unfortunately, been subjected to people asking me about Jenny McCarthy when they hear I have a child with autism. She is seen to be speaking for “the community”.

    I have never had anyone ask me about Ari Ne’eman, though. Too bad, that, for three reasons:

    1) I would suggest that there is a major difference between Mr. Ne’eman and Ms. McCarthy–beyond the obvious differences in stance. Mr. Ne’eman is quite respectful and polite. I can’t say the same about Ms. McCarthy.

    2) Here is the mission statement of ASAN:

    The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

    3) Most importantly, he is an autistic. The autism community should be represented by people (note the plural) who are autistic, in this blogger’s humble opinion.

    Even if you disagree with Mr. Ne’eman’s stance, I would say he presents a better image of the autism community than does Ms. McCarthy.

    For whatever it is worth, much of my complaints with Ms. McCarthy do not stem from my status (whatever that may be) as the parent of an autistic. That is, aside from a rude, ignorant woman with dangerous views claiming to represent my kid. Most of my complaint hinges on the “dangerous views” section. I believe that she and her organization endanger public health using misinformation and pseudoscience.

    Knowing what I know about her and her methods, I would have serious complaints about her even if I didn’t have anyone in my family who is autistic.

  4. Club 166 July 24, 2009 at 03:51 #

    Mother Jones can produce some good stuff.

    Let’s not forget that it was they who produced one of the best pieces exposing the Judge Rotenberg Center:

    http://www.motherjones.com/politics/2007/08/school-shock

    Joe

  5. Orac July 24, 2009 at 14:59 #

    Note: “try watching this video” is a link in the Bad Astronomy blog piece. A link to the video hosted by Generation Rescue. For some reason (bad publicity? Too much bandwidth?) GR has pulled the video from their site.

    Fortunately, I downloaded and saved a copy of the video for evidence of the sheer stupidity contained therein. 🙂

  6. MJ July 25, 2009 at 03:32 #

    Sullivan you said “The autism community should be represented by people (note the plural) who are autistic, in this blogger’s humble opinion.”

    I’m not sure of the rational behind this idea and I can see a few large problems with it. The first is that any person with autism who is able to able to represent the community to the general public is able to function far better than the majority of people with autism (I would even go as far to say that they are more “functioning” that the average NT person).

    The second problem is that autism is not a culture or society – it is a medical disorder. Furthermore, there is lack of consistent traits among the members who share a diagnosis of autism. In other disabled communities (i.e. deaf people) there is a commonality to their disability that gives them a shared experience. Autism does not really have that.

    You put these two things together and you get advocates who doesn’t truly represent the interests or needs of the community. In particular they are unable to represent the needs of children with whom they have very little in common.

    “Even if you disagree with Mr. Ne’eman’s stance, I would say he presents a better image of the autism community than does Ms. McCarthy.”

    No, he really doesn’t, for the reasons I mentioned above. Mr Ne’eman certainly is certainly not representative of my daughters nor is the image he presents an accurate representation of them. Given the fact that they have benefited greatly from ABA and biomedical treatments, treatments which Mr. Ne’eman opposes, I would say that he isn’t representing their best interest either.

    Jenny McCarthy, on the other hand, comes from the prescriptive of a parent who is trying to cure their child’s autism and is very representative of an entire class of parents. There are many, many parents out there who would like nothing more than to “cure” their child’s autism, to remove the barriers that are preventing their from reaching their full potential.

    She is doing the best that she can for her child given the information that she has available. And since you do not have access to the same information that she does you can’t really say if she is taking the right approach for her child.

    You may disagree with her positions on the issues but at the end of the day we still have no answers as to what autism is or what causes it. What is she doing however is moving the debate away from the “its all genetic” theories and pushing it more towards looking for the biological basis of autism. It is all well and good to look for common genes or to look at the pretty pictures of fMRIs but this has been going on too long at the expense of other types of research.

    There are many physiological problems that people with autism have that have received very little attention. For example, my daughters are all zinc deficient and two of them have very low levels of cholesterol. Both of these have been documented in people with autism yet neither has received much attention – why is that? Looking into why these conditions occur and what can be done to help them could go a long way to improving the quality of life for the subset of the autism population that is affected.

    That is what Jenny McCarthy is doing for the autism community and that is why she is a better image for the community.

    • Sullivan July 25, 2009 at 15:31 #

      I don’t really follow the logic here:

      Self advocates are not like autisics who can’t self advocate. So, instead, we should look for leadership a non autistic mother of a non autistic child?

      My perspective is this–there is no cure. If you disagree, please find me a doctor who will guarantee his/her method will cure. Whether one is possible and whether one can be created is one question. Whether a cure is ethical is another. The

      On this point, we all agree–it is ethical to treat or cure the physiological problems that are present in some people with autism is. Such treatments should be pursued. Research into such treatments should be pursued where it is lacking.

      But, accept for the moment if you will this premise: it is very likely that many of the children with autism today will grow into autistic adults.

      What is the world that we, as parents, want for them? Do we want the world to be prepared for them? How do we define “prepared”?

      My method of preparation is to seek out the opinions of autistics. Being autistic isn’t an automatic ticket to having good ideas, just as being a parent isn’t. But we do our kids a great disservice if we parents don’t try to prepare for the future. This is one major lesson I’ve learned from previous generations of autism parents. Many have spent a vast amount of their energies chasing a cure that didn’t materialize. I see it now with the vocal parent/advocates from the past 10 years. I read a lot of complaints that the world isn’t ready for the “tidal wave” of autistic kids about to become adults. What I don’t read is any of them working to actually prepare the world for their kids. I put Jenny McCarthy in that group. Squarely in that group.

      To be frank, I don’t really see leadership from Jenny McCarthy. I see her working effectively as a spokesperson. I see her representing the interests of a minority of autism parents. For her to speak for “the autism community” is a classic case of the tail wagging the dog.

  7. passionlessDrone July 25, 2009 at 17:21 #

    Hi Sullivan –

    What is the world that we, as parents, want for them? Do we want the world to be prepared for them? How do we define “prepared”?

    This is exactly the place at which I part ways with many of the laudable components of an ND mindset. I just don’t see a feasible mechanism by which to “prepare” the world for an adult with the kinds of problems my child has. No matter how difficult a task curing autism might be; “fixing” the world so that he might navigate within it as an adult seems infinitely more complicated, and indeed futile.

    By way of example, years ago my son’s auditory sensory problems were very severe; specifc sounds like a dog barking, sneezing, or an infant crying really sent him downhill fast. In Pre-K he hit often as a result of the child already being crying (the irony being that a smacking didn’t do anything but make the child cry more), previous to that timeframe, pre-K, he punched a crying newborn.

    How could I prepare the world such that he wouldn’t have problems with sound sensitivies that ultimately led to confrontations or indeed, legal problems?

    Once about a year ago, my son was acting irritable. But we had no idea why. Unfortunately, he cannot respond to a question like ‘Are you in pain?’ or ‘Where does it hurt?’ or ‘What’s wrong?’. It turns out, he had an ear infection; we found out when his eardrum ruptured and bunches of yellow goo came out.

    How might I conceivably prepare the world such that problems like this aren’t a fixture of his life?

    Once Luke was sick; a few days later my wife and I came down with it. One of the first and worst manifestations of this illness was a very robust sore throat. Tragically, we’d never given Luke any syrup; we had no idea he had a sore throat.

    And this is where the qualitative and pervasive differences between the challenges facing someone like Air Nee’man and my raising problems for me if people are going to association his message with autism. I don’t believe for one second that if he had an ear infection, it would remain unknown to doctors until his eardrum ruptured. Does he cower in fear and cry if he hears a dog bark in the wrong way? Has he ever suffered from a sore throat, or a headache because he has no means tell anyone that he is experiencing those things?

    Note that I haven’t even bothered to discuss the problem of ignorance.

    I’m all for the notion of having a world where our children can function as adults; I just don’t see a roadmap to that place. Instead, however, if my son can answer questions like ‘Why are you irritated.’, he’ll be able to function in whatever world awaits him.

    To be frank, I don’t really see leadership from Jenny McCarthy. I see her working effectively as a spokesperson. I see her representing the interests of a minority of autism parents.

    Poor leadership for sure; but she is resonating with lots of people. Her ability to accomplish this has nothing to do with her looks or the relative stupidity the people she reaches; but is simply a manifestation filling a vacuum; being the first person to publically speak towards what so many others have experienced.

    Your assertion that her interests are of a minority of parents is without substantiation.

    – pD

  8. MJ July 26, 2009 at 15:52 #

    Sullivan – you said :

    “Self advocates are not like autisics who can’t self advocate. So, instead, we should look for leadership a non autistic mother of a non autistic child?”

    I think we need to start back at the definition of the word “advocate” : “One that argues for a cause; a supporter or defender”. So yes, I really think that is is the parent’s job to advocate for their child and they will do a better job of being an advocate for their child then someone who doesn’t even know them.

    “My perspective is this—there is no cure.”

    Again, we need to take a step back and ask ourselves what exactly is autism? Right now there are a set of behavioral criteria that define what it is – nothing more and nothing less. We do not understand what the biological basis of the condition is, we don’t know what it changes in the body, nor can we even reliably detect the condition.

    So if you don’t know what something is how can you state that there is no cure?

    “What is the world that we, as parents, want for them? Do we want the world to be prepared for them? How do we define “prepared”?”

    As passionlessDrone pointed out preparing the world is going to be an impossible task. For example, one of my daughters has issues with flowers – she fixates on them and thinks that all of the flowers in the world are hers for the picking. This falls under the 3rd part of the autism criteria so this is an “autistic” trait. How is it possible to prepare the world for someone who wants to pick every flower she sees?

    And this is just the most trivial part of her disability, her communication on social skills are comprised as well (hence autism). How can we try and teach every person in the world to accept, tolerate, and understand her?

    Isn’t it better to try and teach her to deal with the world? That goal is attainable and within the reach of the treatments that are available today. I am not saying “cure” because you are correct, today there is no “cure” because we don’t even understand what “it” is. I am saying treat and I am implying changing the underlying behaviors that make up her autism – teaching her to be able to able to function in a “normal” world. I want her to be able to walk past a flower bed and resist the urge to rip out every flower.

    As for seeking out the opinion of other autistics – as I said before autism is very different from person to person and it is highly likely that there are different “forms”.

    The majority of publicly vocal “autistics” is mostly made up of socially awkward teenagers who have decided to make having autism their identity. This group has nothing to teach us.

    There are also adults who have made autism their identity – these people have nothing to teach us either. You are a person first and foremost not a disability. You don’t see people with other mental disorders making that their identity – how many people do you think are out there calling themselves “depressives”? So if you want to make a condition like autism a core part of your identity then great, that is your right, but you certainly don’t have anything to add to the discussion.

    This leaves a few people who do have autism and do speak publicly about it – these people we should listen to and respect their opinion.

    But, at the end of the day, it is still the job of the parent to be the primary advocate for their child.

  9. Luna_the_cat July 27, 2009 at 17:36 #

    MJ, you said, of Jenny McCarthy:

    She is doing the best that she can for her child given the information that she has available. And since you do not have access to the same information that she does you can’t really say if she is taking the right approach for her child.

    …But this is wrong. She is not. She has chosen what she is going to believe on the basis of emotional preference, not reason, and has steadfastly ignored all the massive amounts of evidence presented to her by multiple people that what she believes is not based on reality. In “sticking to her guns” the way she has, she has ignored, dismissed and denigrated *real* expertise in preference to outright quackery and ignorance, and ignored all the evidence that this is what she is doing. And furthermore — and what is worse, in my opinion — is that she has subjected her son, who has no voice in this or control over it, to countless quack treatments which may actually do him real and genuine harm (those “special diets” which McCarthy is so fond of can weaken bones, and chelation can damage neurons itself, as well as put children in danger of fatal heart attacks).

    She can be considered to have “done her best” only if you think all opinions, informed and uninformed, educated and uneducated, based on evidence and evidence-free, are all equal. THEY ARE NOT.

    And interestingly, the real medical community IS making progress in unravelling the biology of the disorder. 16 different genes have been identified as being linked to autism, and both their function and their interactions are in the process of being mapped (as in http://www.abdn.ac.uk/mediareleases/release.php?id=1870). There is significant progress every year, now, even though the truth of it is that this is a huge and complex jigsaw puzzle with no easy answers.

    This kind of investigation isn’t as fast or as miraculous as people would like, but on the other hand, it is based on actual evidence, the physical mechanisms are now within the range of investigation, and it offers hope for real tharapies in the future. But the pseudoscience which McCarthy prefers actually sucks funding and time *away* from that.

    It’s a disservice to everyone — her own son included. And it doesn’t help anyone either that she claims to have “cured” her son (why doesn’t he speak for himself, then?) but that she could make his autism reappear if she withdrew him from his special diet (not much of a cure, then), or that the quacks she likes to hang out with consider autistics “broken”, at minimum “damaged” or at worst even “soulless”.

    In short, she banks everything on the emotional appeal of being a “warrior mom”, but there is nothing which truly recommends her as a model.

  10. Luna_the_cat July 27, 2009 at 19:12 #

    I would add, to

    There are also adults who have made autism their identity – these people have nothing to teach us either.

    …Actually, that’s just abit rubbish, too.

    Yes, there are a number of adults who make autism their identity. There are a number of adults who make their ethnicity their identity. There are a number of adults who make their sexual orientation their identity. There are a number of adults who make their deafness their identity. Does that mean none of them have a “legitimate” voice from which the rest of the world could learn?

    Bollocks.

    There are also a lot of adults who resent being pigeonholed into a single label. And they are legitimate voices. But so are the first type. They are members of that community, therefore by definition they have legitimate voices about it. And if you weren’t so blithely dismissive, you might find you had things to learn from them, too.

  11. Sullivan July 27, 2009 at 19:59 #

    “Self advocates are not like autisics who can’t self advocate.”

    And to be clear–that is a rephrase of your logic. In my opinion, autistic self-advocates are like other autistics in one very important way. They are autistic.

    I think we need to start back at the definition of the word “advocate” : “One that argues for a cause; a supporter or defender”. So yes, I really think that is is the parent’s job to advocate for their child and they will do a better job of being an advocate for their child then someone who doesn’t even know them.

    First, I am not stating that parents give up their roles. No advocate has responsibility for your or my child. But when it comes to advocacy,

    But, again, you are now stuck in a logical trap. Does Jenny McCarthy know your child? She’s never met mine. She doesn’t even know my kid’s name. How can she advocate for autistics?

    Jenny McCarthy is a non autistic mother of a non autistic child. Why exactly in your argument above should she be advocating for anything having to do with autism?

    Besides being inconsistent on the “is Jenny McCarthy a good advocate for the autism community” question, you are now stuck in the position that no one can advocate for your child except you.

    As for seeking out the opinion of other autistics – as I said before autism is very different from person to person and it is highly likely that there are different “forms”.

    Why do people always act like this is a new idea? The concept that autism has multiple eitiologies goes back at least 40 years.

    So if you don’t know what something is how can you state that there is no cure?

    You appear to be mistaking “there is no cure” for “there can be no cure”. At present, there is no cure.

    How is it possible to prepare the world for someone who wants to pick every flower she sees?

    By teaching the world to respect neurological differences.

    Here is one method of advocacy: “People with autism are terribly damaged. Because of this, some people pick every flower they see. Without a cure, they will continue to be damaged like this.”

    Here is another method of advocacy: “People with autism deserve understanding and respect. Some people pick every flower that they see. This isn’t a choice for that person, and society should learn to accommodate and respect people with this difference/disability.”

    I don’t have a problem deciding which world I would like to try for. Even if I was actively seeking a cure, I would still be promoting greater accommodation and respect.

    Besides, if the argument is “it is impossible to change society”, show me how it is possible to cure autism? Once again, you are applying one standard to shoot down the idea of giving respect and accommodation, and another to support the search for a cure.

    The majority of publicly vocal “autistics” is mostly made up of socially awkward teenagers who have decided to make having autism their identity. This group has nothing to teach us.

    Nice stereotyping there. I sincerely wish that someday you understand the numerous mistakes you made in that one sentence.

    You don’t see people with other mental disorders making that their identity – how many people do you think are out there calling themselves “depressives”

    I guess you never heard of the Society for the Blind? The American Society for Deaf Children?

    But, at the end of the day, it is still the job of the parent to be the primary advocate for their child.

    Absolutely. But, this parent would like to prepare for the day when his child is an adult. This parent would like to learn from those who are like my child, not like myself.

  12. Sullivan July 27, 2009 at 20:04 #

    Luna_the_cat,

    thanks for what you had to say. You reminded me of an old post of Kev’s:

    From Jerry Kartzinel’s forward for one of Jenny McCarthy’s books:
    https://leftbrainrightbrain.co.uk/?p=663

    “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one. It relegates every other “normal” thing to utter insignificance.”

    For the life of me, I can’t see how Dr. Kartzinel could write that.

  13. Sullivan July 27, 2009 at 20:13 #

    No matter how difficult a task curing autism might be; “fixing” the world so that he might navigate within it as an adult seems infinitely more complicated, and indeed futile.

    My grandparents would have likely said the same thing about fixing American society to accept non-whites. They were wrong.

    By way of example, years ago my son’s auditory sensory problems were very severe; specifc sounds like a dog barking, sneezing, or an infant crying really sent him downhill fast.

    This is something that should be addressed if at all possible, in my opinion. Do you have knowledge that someone like Mr. Ne’eman would say “do nothing” about this? Or are you just assuming?

  14. Sullivan July 27, 2009 at 20:21 #

    Your assertion that her interests are of a minority of parents is without substantiation.

    It is. But, it is defensible.

    Most people with autism are adults. Unless you can give me a reliable study to promote the “epidemic”, we have to assume that the prevalence is at least somewhat flat. I see very little in the way of parents of adults with autism in these discussions.

    Second, the loose definition of “autism” that is used is a substitute for all ASD’s. As this discussion, heck your own posts show, most people pushing the cure agenda are not parents of children whose children have PDD-NOS or Asperger Syndrome. Those categories are the majority of ASD’s. Surveys of parents doing alternative medical treatments on their children show that it is applied much less often to PDD-NOS or AS children.

    Tell me, how many DAN! doctors are there? Surely not enough to cover even the majority of children with autism.

  15. Luna_the_cat July 27, 2009 at 20:40 #

    How could Dr. Kartzinel say that?

    My guess is that he is like Andrew Moulden: he tries to play up the parents’ horror and frustration about the situation as much as possible, so as to encourage the desperation which pushes people to turn to the expensive quackery on offer for a “miracle cure.”

    The ethics are pretty much as nonexistant as the perception that autistic kids are still fully human.

  16. passionlessDrone July 27, 2009 at 23:00 #

    Hi Sullivan –

    My grandparents would have likely said the same thing about fixing American society to accept non-whites.

    This is a common false analogy thrown up in these discussions; most of the challenges our children face aren’t solvable by modification of cultural norms; at least the ones I’m worried about aren’t. What cultural norm do I change so that when my son has a headache, he gets treatment for it, as opposed to suffer needlessly? How can I fix American society such that it is OK for my son to verbally stim in a library? [Assuming I can fix American society such that he can be taught to understand the concept of putting letters together into words, and the concept of putting words together into sentences.]

    Non whites can read, drive a car, tell someone they have an earache, understand that it is inappropriate to hit other children, cook a meal, hold a job, visit the library without disturbing the other patrons, or thousands of other things that some of our children can’t. That’s the other big difference that makes the comparison faulty; the problems associated to non whites weren’t real, the problems associated with autism are real (again, at least the ones I’m worried about).

    This is something that should be addressed if at all possible, in my opinion. Do you have knowledge that someone like Mr. Ne’eman would say “do nothing” about this? Or are you just assuming?

    Whether or not he would say to do nothing about it is irrelevant towards where I believe the problem lies. Funny enough, in a strange way, we are shooting towards a similar goal; greater understanding of autism. The view displayed by Mr. Ne’eman doesn’t have anything to do with my experience, and I’m not confident that the public at large has the attention span nor willpower to discriminate between the vast, vast functional differences between Mr. Ne’eman and my son.

    If Mr. Ne’eman becomes the face of autism, the general public certainly won’t think ‘autism’ when they see my son, because the two aren’t anything alike. This is going to affect how he is viewed, and ultimately, treated. For example, I can think of no better argument against insurance for things like ABA than Ari Ne’eman being the representative of autism. You and I understand the nuances of the spectrum, but very few outside our (growing) community do; and things like legislation aren’t built around nuance.

    I realize a common argument to this is the inverse, that having the most severe children as illustrations of autism can also be damaging to some folks; and I’ll acknoledge that to some extent. But degree of disability does make a difference (to me).

    Ultimately, if you’ve got the capacity to send out mass emails regarding your upcoming trip to the White House concerning legisltative progress; that tells me that you’ve mastered hundreds of subtle abstract concepts and can communicate them well. Compared to someone who lives with a sore throat for the lack of ability to demonstrate the need for assistance, I just cannot work up much sympathy for the idea that somehow the very real represetnation of the other end of the spectrum is that damaging. Ari is gonna do just fine. As for children like my son, I have no such confidence.

    – pD

    (no emails 😦 )

    • Sullivan July 28, 2009 at 02:06 #

      There is much in your post I would take issue with, but I’ll concentrate on this one statement:

      “Ari is gonna do just fine”

      The phrase “you just proved my point” is much abused in internet discussions. However, if this were a discussion of whether a cure for autism is needed, you would have just proven the point that a cure for autism is not needed. If Ari is going to do just fine (I wonder how you know that, btw), then one need not cure autism.

      A pretty smart autistic (who is, yes, disabled) once posed the following question to me. I paraphrase. If autism parents were given a choice of two pills. One would cure their child of autism, leaving behind all other conditions, including intellectual disability. The other would cure all the other conditions and leave behind the autism. Which pill would parents chose?

      Now, as to who should represent the autism community (the discussion I was concentrating upon). First, there are a diversity of opinions and a diversity of experiences. Why should there be a single “face” of autism?

      Much more important is who should be included as those faces. At the risk of sounding insincere, I would posit that you would make a better face to the cure movement than Jenny McCarthy. OK, I suspect you aren’t getting invited onto Oprah’s couch anytime soon. But, you tend to discuss based on science and your own experience. You don’t use (in my recollection) terms that are demeaning.

      There is no reason for the autism “community” to pretend to be a single entity with one set of values and goals. At the same time, there is no need for people like Jenny McCarthy and Jerry Kartzinel to trample the rights and dignity of the very people they presume to advocate for.

  17. MJ July 28, 2009 at 01:27 #

    Luna_the_cat you said :

    “…But this is wrong. She is not. She has chosen what she is going to believe on the basis of emotional preference, not reason, and has steadfastly ignored all the massive amounts of evidence presented to her by multiple people that what she believes is not based on reality”

    This statement is simply not true. Presumably you do not have access to her son’s medical records nor where you there for appointments with his doctors. So you cannot be basing your statements on facts – the only source of information you have is public statements that have been made. The best you can say is that you don’t believe that she is acting on good information.

    “those “special diets” which McCarthy is so fond of can weaken bones”

    That statement is false, the study which found the possible relation did not say if the people on the diet had calcium supplements to replace some of the missing calcium nor did not have enough power to detect if the lower bone mass was related to the diet or to another factor (ie poor absortion of nutrients). If you have another source for that statement besides the one study, please provide it.

    “and chelation can damage neurons itself”

    Never heard that one before, source?

    “as well as put children in danger of fatal heart attacks”

    Please provide a reference for how chelation, when properly administered, can cause fatal heart attacks.

    “that she could make his autism reappear if she withdrew him from his special diet (not much of a cure, then)”

    Do you know what celiacs disease is and how it is treated?

    “Yes, there are a number of adults who make autism their identity. There are a number of adults who make their ethnicity their identity. There are a number of adults who make their sexual orientation their identity. There are a number of adults who make their deafness their identity.”

    Not one of these is a mental disorder. Name one mental disorder where you think it is appropriate and healthy for the disorder to become part of your identity.

  18. MJ July 28, 2009 at 02:27 #

    Sullivan you said –

    “But, again, you are now stuck in a logical trap. Does Jenny McCarthy know your child? She’s never met mine. She doesn’t even know my kid’s name. How can she advocate for autistics?”

    She certainly doesn’t know my children either – that is the reason that I reserve the right to speak on their behalf. Also, if you go back and look at my exact words I did not call her an advocate for autism as a whole nor was in my intention to do so. I said that she was a better image than Mr. Ne’eman because, in my opinion, she is more representative of a wider segment of the autism world AND she is pushing research in what I feel is a good direction.

    Mr. Ne’eman on the other hand does not believe that autism is a disorder, which is absurd on its face.

    “Jenny McCarthy is a non autistic mother of a non autistic child. Why exactly in your argument above should she be advocating for anything having to do with autism?”

    Her child has/had in the past/has on some days and doesn’t on other days (pick your favorite tense) autism. She talks about her experiences with said autism and how she tries to help her child. Therefore she is a parent advocating for a child who is/was/might have been effected with autism.

    “Besides being inconsistent on the “is Jenny McCarthy a good advocate for the autism community” question”

    See above.

    “you are now stuck in the position that no one can advocate for your child except you.”

    Given the way that you wrote that statement, yes, it is true. Other people can advocate for people with autism in general if they want (and I reserve the right to disagree with them) but not one else can or should speak for them directly.

    Given the differences between any two people with autism and the differences it their disability it is hard for any one person to advocate for any size group in the autism world.

    “By teaching the world to respect neurological differences.”

    First, autism is a disorder, not a difference. If you want to use a different meaning that the accepted definition of word use a different word.

    Second, the flowers is just one example out of what is likely a field of thousands. Should society tolerate every possible obsession that is out there? Is the new rule going to be that anyone can engage in any behavior they want to because they might have autism? And how do we separate people with autism who can’t help it from someone who just doesn’t want to act within the normal rules?

    Third, the approach I take is explain that she has autism and this is part of what it means – sometimes she really wants to pick the flowers. AND I actively try to teach her that is is not acceptable to pick every flower she sees. If I see that she is starting to become overloaded I remove her from the situation (if at all possible) or distract her and help her to focus on something else.

    I don’t think I have a right to demand that society add a new rule that my child is allowed to pick any flower she wants nor will it be healthy for her in the long run if she thinks she has the right to do so.

    “Besides, if the argument is “it is impossible to change society”, show me how it is possible to cure autism? Once again, you are applying one standard to shoot down the idea of giving respect and accommodation, and another to support the search for a cure.”

    I don’t really see the inconsistency here. One thing can be accomplished via science, which has a highly structured system that is designed for tackling problems like this while the other is changing the collective minds of billions of people. Which do you want to try to do?

    As to how it is possible to cure autism, I really don’t know and I wish I did. There are certainly things that that help but nothing that I see that can “cure”.

    “Nice stereotyping there. I sincerely wish that someday you understand the numerous mistakes you made in that one sentence.”

    I am basing my statements on my own observations and readings, and I stand by my opinion. The majority, in terms of numbers, that I have run across fit into this category. For example –

    http://autismjabberwocky.blogspot.com/2009/06/neurodiversity-stop-hate.html

    is a classic example. Or look at opinions on this thread –

    http://www.wrongplanet.net/postt103654.html

    The DAN protocol equals “eugenic”? Really? Ignore the subject matter and read how the majority of the responses are phrased and see if you don’t get the impression that most of the responses are juvenile.

    In terms of pure numbers, these are the majority of the type of people who are out there putting the public face to autism.

    I don’t make a habit of listening to any juveniles for advice on complex medical issues or how to raise children with specical needs, do you? Especially if they have latched onto something like autism and decided it is a good thing.

    “I guess you never heard of the Society for the Blind? The American Society for Deaf Children?”

    Do you consider blindness and deafness to be mental disorders?

    “As this discussion, heck your own posts show, most people pushing the cure agenda are not parents of children whose children have PDD-NOS or Asperger Syndrome. Those categories are the majority of ASD’s. Surveys of parents doing alternative medical treatments on their children show that it is applied much less often to PDD-NOS or AS children.”

    Hmm, I have not seen this before, do you have a reference to the surveys you mention, I would be interested in looking at them.

    • Sullivan July 28, 2009 at 18:04 #

      There is much to respond to in your comment, MJ.

      First, autism is a disorder, not a difference. If you want to use a different meaning that the accepted definition of word use a different word.

      You don’t understand the word “difference”, or you are using a nonstandard version of the word yourself. Even within your own logical framework you seem to be arguing that there is no “difference” to someone with a “disorder”.

      I am basing my statements on my own observations and readings, and I stand by my opinion.

      With that, I wish you well.

  19. passionlessDrone July 28, 2009 at 02:34 #

    Hi Sullivan –

    But it is defensible.

    Heh. It is also very vulnerable to simple logical tests. For example, let us assume that you are correct, and autism incidence has always been flat. This means that for every Jenny McCarthy, who is the parent of a child; there are ten or a dozen or more parents of adults out there; parents who feel the opposite of Ms. McCarthy. And yet, for some reason, they seem invisible during all of this discussion; you say so yourself:

    I see very little in the way of parents of adults with autism in these discussions.

    Are you unconcerned with this paradox?

    It these parents are randomly distributed throughout society, and we have no reason to think they wouldn’t be, how come there aren’t ten people with agents as good as Jenny’s, who have gotten their client on Oprah to talk about neurodiversity? There should be no shortage of model good looking, vapid actresses that can shed a tear telling the flip side of the story and sell some ghost written books.

    Second, the loose definition of “autism” that is used is a substitute for all ASD’s. As this discussion, heck your own posts show, most people pushing the cure agenda are not parents of children whose children have PDD-NOS or Asperger Syndrome. Those categories are the majority of ASD’s. Surveys of parents doing alternative medical treatments on their children show that it is applied much less often to PDD-NOS or AS children.

    I’m sensing shifting goalposts here, but I would tend to agree with your assertion that most people who advocate for a cure are parents of children on the more severe end of the spectrum. In fact, I argued this rather laboriously above.

    If Jenny came out and said, my message is for autism only, and not for PDD-NOS, or Aspergers, I doubt your concern over her message would be diluted.

    But in any case, so what? If we are talking public perception here there is only one thing; autism. They don’t have time for PDD-NOS/Aspergers or whatever. I’d also tend to believe that CAM are more frequently applied to autism as opposed to PDD-NOS, but only on a common sense basis. Do you have a link for any such survey that breaks down ASDs by this categorization as applied to CAM usage?

    Tell me, how many DAN! doctors are there? Surely not enough to cover even the majority of children with autism.

    You may not realize this, but most DAN doctors have waiting lists several months long for an initial appointment, some are over a year. In my son’s special education class there are five children with autism; at least three have either seen a DAN or have done some type of biomedical intervention. I don’t know the parents of another, so we can put him as a no. Regardless, your assertion that in order to agree with Jenny you have to see a DAN is also unsubstantiated.

    – pD

  20. Sullivan July 28, 2009 at 03:20 #

    Heh. It is also very vulnerable to simple logical tests

    Why suddenly apply simple logical tests to issues on autism? It’s a nice change!

    Are you unconcerned with this paradox?

    It always pains a writer to note that people don’t read what we write. I have written multiple posts about the issues of adults. I have written multiple posts noting that there are almost certainly a VERY large group of adults with autism who are mislabled.

    But, hey, it fits the “epidemic” model to ignore the adults. It fits the political aims of the “epidemic” promoters to avoid spending research money on finding the adults with autism.

    It is one of the areas where groups like “Jenny McCarthy’s autism organization” are shooting us in the foot.

    Unless you believe that adults with autism can be served with the same supports as people with other disabilities, you really should be calling for identifying and studying adults with autism.

    So, are *you* concerned about the

    I know that many DAN! doctors claim long waiting lists. Funny, my experience is quite the opposite. The local DAN! docs here don’t seem to be so impacted. The “famous” ones, that’s another story.

    For what it is worth, I know of families who are following DAN! like protocols (thankfully avoiding the chelation nonsense) who are very critical of Jenny McCarthy. So, I wouldn’t assert that. I used it as a rough measure.

  21. daedalus2u July 28, 2009 at 16:54 #

    MJ, the citation for chelation causing cognitive defects.

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17384765

    I am not aware of any data that “properly administered chelation” does cause heart attacks. But “properly administered chelation” is only given following verified heavy metal poisoning. That means following a real blood or urine test that shows actual pathologically high heavy metals. The fake provocation tests that DD and the chelating quacks use are insufficient evidence for “properly administered chelation”.

    The boy who was killed by being chelated with EDTA didn’t have elevated heavy metals, so he did not receive “properly administered chelation”. In his case, “properly administered chelation” would have been no chelation.

    • Sullivan July 28, 2009 at 17:59 #

      daedalus2u,

      thanks for finding the citation.

      Much of what I read about chelation from alternative medical practitions is far from “properly administered”. I would suggest people talk to an actual medical toxicologist sometime. Or, read papers on case reports of people with actual mercury poisoning. The regimen’s given bear little resemblance to those applied to autistic kids.

  22. passionlessDrone July 28, 2009 at 17:35 #

    Hi Sullivan –

    There is much in your post I would take issue with, but I’ll concentrate on this one statement:

    Well, come back if you’d like. I appreciate criticisms and find them useful to honing my arguments.

    The phrase “you just proved my point” is much abused in internet discussions. However, if this were a discussion of whether a cure for autism is needed, you would have just proven the point that a cure for autism is not needed. If Ari is going to do just fine (I wonder how you know that, btw), then one need not cure autism.

    But Ari doesn’t have autism, he has Aspergers. Earlier you seemed to have concern over lumping these two together. (?) Previously I believe you mentioned your insurance company denied your speech or OT because developmental disabilities were outright denied; if instead, they said that autism doesn’t need treatment because Ari Ne’eman can talk fine, I doubt you would have found that any more palatable.

    As far as ‘how I know this’, I’m using a relative scale to make judgements; with someone able understand the concepts behind a trip to the white house and communicately electronically on the meaning of such a trip on one end of the scale, and someone who doesn’t understand that three is a larger number than one on the other end of the scale. The determiniation as to which person is going to do ‘just fine’ in relation to the other seems pretty simple to me.

    A pretty smart autistic (who is, yes, disabled) once posed the following question to me. I paraphrase. If autism parents were given a choice of two pills. One would cure their child of autism, leaving behind all other conditions, including intellectual disability. The other would cure all the other conditions and leave behind the autism. Which pill would parents chose?

    This gets tricky, as it relies on my idea of what autism ‘is’ versus someone elses. All I can do is qualify my feeelings this to the best of my ability.

    Anyways, I’d take away the autism and leave the rest. Why? Because it is the severe problems with communication, the heart of autism (to me), that is causing so many of the problems I worry about. Without foundational building blocks of communication, understanding abstract concepts like how to read, responding to a question like ‘are you in pain’, or the idea that red means stop and green means go are very difficult, if not impossible to achieve. And it is a lack of this understanding of the abstract that is so problematic in my experiences. If my son could understand and initiate communication, so many of his other problems would dissipate.

    Your friend who posed this question to you obviously has mastered many of the abstract concepts that seem beyond the reach of my son, and other children I have known. He or she also seems to have a very well developed ability to communicate, by one means or another. If I could give my child a pill that would get him even to this point, I’d fire away and never think twice.

    First, there are a diversity of opinions and a diversity of experiences. Why should there be a single “face” of autism?

    Unfortunately, we run into what should be, versus what is and the driving factor the publics ability to discriminate. For pretty much two decades the single face of autism was Rainman; not because it was accurate, but because the public has lots of stuff to do and concentrating on other peoples problems is relatively low on their list. I’m agree with you in spirit, but the reality of getting there seems problematic for me.

    – pD

    ps – now occassionally getting emails without a body but a subject line of left brain / right brain.

  23. パズドラさ October 16, 2013 at 08:42 #

    トリーバーチ 店舗 銀座

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