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Andrew Wakefield Fights Back

Dr. Andrew Wakefield was almost single-handedly responsible for frightening the public about a possible association between autism and the MMR vaccine. His alarmist recommendations directly led to lower vaccination rates and a resurgence of measles to endemic levels in the UK. The MMR/autism interpretation of his 1998 article in The Lancet was retracted by 10 of his 12 co-authors. The article itself was “fully retracted from the public record” by The Lancet. And now Wakefield has lost his license to practice medicine after the General Medical Council’s exhaustive 2½-year review of his ethical conduct.

His career was in shreds and there was only one way left for him to fight back: to write a book. Callous Disregard: Autism and Vaccines — The Truth Behind a Tragedy has just been published. I tried hard to read it with an open mind and to understand his point of view. He did make some points that I will accept as valid unless they can be refuted by the others involved. Some of what he said and did was apparently misinterpreted and distorted by his critics. But the book did not convince me that he was an ethical, rigorous scientist or that MMR is linked to autism or to bowel disease. In my opinion the book does nothing to scientifically validate his beliefs or to excuse his behavior, but rather boils down to self-serving apologetics and misleading rhetoric. It also undermines his claim that he is a good scientist by showing that he values anecdotal evidence (“listening to the parents”) over experimental evidence.

The preface is by Dr. Peter Fletcher of the UK’s Committee on Safety of Medicines. Some of what he says is demonstrably wrong. He alleges that vaccines have only been “minimally investigated,” that concerns about anaphylaxis have been neglected (Wakefield also stresses the danger of anaphylaxis), and that the mortality rate from MMR vaccines approaches the pre-vaccination mortality rates for measles. These allegations are ridiculous and easy to disprove with a couple of minutes’ Googling. (In an Australian study of 1.7 million school children vaccinated with MMR, there was only one anaphylactic reaction and no deaths. Before the introduction of vaccines, measles used to kill 100 people in the UK every year and MMR vaccine has never been known to kill anyone.) Fletcher also offers his unsupported opinion that the subjects in Wakefield’s study had “a complex new syndrome” whose root cause is “almost certainly vaccines.”

The foreword is by Jenny McCarthy, who offers the tired old “listen to the parents” argument and calls Wakefield “the symbol of someone who stood up for truth.”

Wakefield starts the book with an anecdote about a mother who killed herself and her autistic child: moving, but irrelevant to the questions of whether Wakefield was unethical or whether vaccines cause autism.

Wakefield does not recognize that he has done anything wrong. Instead, he accuses the regulatory authorities of callous disregard of children’s safety; he accuses his accusers of having personal motivations to destroy him and to maintain the vaccine party line at all costs; he accuses Brian Deer, the investigative reporter who exposed him, of getting the facts wrong; he accuses others of not reporting their own conflicts of interest, etc.

He accuses the regulators and the vaccine industry of “ruthless, pragmatic exorcism of dissent” and tries to show that they are effectively anti-vaccine because they have caused the decrease in public confidence that is the greatest threat to the vaccine program. He says if consumers don’t get the answers they want (presumably a guarantee of 100% safety), they should trust their intuition, because

Maternal instinct… has been a steady hand upon the tiller of evolution; we would not be here without it.

These are not the words of a critical-thinking scientist; they sound more like something Jenny McCarthy might say.

Then he claims that the US vaccine court has been compensating for cases of vaccine-caused autism and secretly settling cases out of court. This is not true. The only source he gives for this misinformation is this report from CBS News that distorts the facts, confusing vaccine injury with encephalopathy and mitochondrial disorders with injury from autism. In reality, the vaccine court has evaluated the best test cases lawyers could come up with and has determined that there is no evidence for vaccines causing autism.

He stresses that the paper itself did not claim that MMR caused autism. That’s true. The problem was not the paper itself, but Wakefield’s interpretation of it in his press conference, where he advised against the MMR and recommended single vaccines instead. His comments at that press conference were what led to the public rejection of MMR vaccines and the resurgence of measles in the UK. He devotes a whole chapter to the press conference. He gets bogged down in minutiae about what the dean thought he was going to say and who knew or said what and when. He cannot justify his recommendation of single vaccines instead of the combined MMR, and he doesn’t address the fact that he had filed a patent application for his own single measles vaccine, a clear conflict of interest that he failed to disclose.

He has a whole chapter on the UK government’s delay in rejecting a particular brand of MMR vaccine that had been withdrawn in Canada. That episode says nothing about vaccines and autism and is not justification for Wakefield’s actions.

He denies that the lawyer funded the 1998 Lancet study, but admits that the lawyer was already funding a related measles virus study of Wakefield’s at the time. He offers convoluted explanations of how the subjects came to him. He denies that they were sent by the lawyer or that they were litigants at the time of the study. While that may be technically true, Wakefield was already known for his criticism of the MMR vaccine and for his hypotheses about measles virus and bowel disorders, and he readily admits that his reputation led a network of concerned activists to direct patients to him. These were not simply patients who presented to the clinic in the normal course of things. He says he was not required to report this sort of thing as a conflict of interest under the rules in effect at that time, but that the rules subsequently changed. Whether it was a requirement or not, it is something I would have wanted to know when I originally read the study.

He still doesn’t understand what was wrong about paying children to let him draw blood samples at his son’s birthday party. He doesn’t understand why scientists don’t usually use “samples of convenience” like this for a control group, and he doesn’t understand the element of coercion. He doesn’t even have the decency to apologize for making fun of the children in public, joking about them crying, fainting, and vomiting. He just doesn’t get it.

He tries to claim that doing invasive procedures like colonoscopies and lumbar punctures (LPs) on the subjects in his study was not for research but something that should have been done on every autistic child for the child’s clinical benefit. He doesn’t make a convincing case. Certainly the majority of clinicians who evaluate autistic children do not do these studies routinely.

He says that autism must not have existed in 19th century Paris because Charcot did not describe it! He implies that the rise in autism was temporally associated with the introduction of MMR vaccine; but a recent study showed that the prevalence of autism in adults was equal to that in children and did not decrease with age, even in those over 70 who were far too old to have been exposed to any of the modern children’s vaccines.

He says his findings of a new gastrointestinal syndrome related to measles virus and autism have been replicated around the world. They have not. He cites a few papers that seem to support his hypothesis but fails to cite the bulk of data that refutes it. For instance this study showed no association between autism and overall incidence of gastrointestinal symptoms. This one showed no autism/GI connection either. And this study showed strong evidence against association of autism with persistent measles virus RNA in the GI tract or with MMR exposure.

He tries to demolish the GMC’s case against him. If he could do so in a book, one can only wonder why he didn’t present his evidence at the hearing. He goes into excruciating, mind-numbing detail about points that are really peripheral to the central issues.

He dissects a newspaper article by Brian Deer, but most of what he calls “false allegations” amount to trivial nitpicking about wording or interpretation. Some of it is reminiscent of a certain former president’s quibbling about what the meaning of the word “is” is. Deer made many other allegations in his exposés that Wakefield does not mention or attempt to refute, such as the apparent attempt to hide his source of funding (for a different study?) by funneling the lawyer’s payments through a company of Wakefield’s wife. There are many unanswered questions.

Perhaps the most unfortunate chapter in the book is “Poisoning Young Minds,” a prime example of Godwin’s law. He describes how a math question in schools in Nazi Germany used Jews as an example, thereby sowing the seeds of anti-Semitic propaganda into young, fertile Aryan minds. He compares this to a question on a UK biology exam that used Wakefield’s study as an example, asking students whether it was reliable scientific evidence or might have been biased. This takes up a whole chapter!

In his concluding epilogue, he says

In the battle for the hearts and minds of the public, you have already lost… Why? Because the parents are right; their stories are true; their children’s brains are damaged; there is a major, major problem. In the US, increasingly coercive vaccine mandates and fear-mongering campaigns are a measure of your failure — vaccine uptake is not a reflection of public confidence, but of these coercive measures, and without public confidence, you have nothing.

How ludicrous: he is clearly the one who undermined public confidence, not the scientists and agencies that are doing their best to reduce the incidence of preventable diseases and to protect the public from alarmists like him.

In my opinion, the whole book is an embarrassing, tedious, puerile, and ultimately unsuccessful attempt at damage control. Wakefield has been thoroughly discredited in the scientific arena and he is reduced to seeking a second opinion from the public. Perhaps he thinks that the truth can be determined by a popularity contest. Perhaps he thinks the future will look back at him as a persecuted genius like Galileo or Semmelweis. Jenny McCarthy thinks so; I don’t.

Posted in: Book & movie reviews, Vaccines

Leave a Comment (48) ↓

48 thoughts on “Andrew Wakefield Fights Back

  1. Michelle B says:

    More apt a tittle than Wakefield fights back would be:

    Wakefield raises a limp noodle and it breaks in mid-air under the weight of its limpness.

  2. Shelley says:

    Could this be posted as a review of the book for Amazon or elsewhere where it might have greater impact among the uninformed ?? I see that the book gets 4/5 stars on Amazon already.

  3. provaxmom says:

    Please at least tell us that you didn’t actually pay for the book, you borrowed it from the library, right?

  4. SpaceCadet says:

    You seem to be assuming the purpose of the book was to convince other scientists of the quality of his research. It’s not. It’s to sell to his (exceedingly non-critical) followers and make lots and lots of money. End of story.

  5. “Wakefield starts the book with an anecdote about a mother who killed herself and her autistic child: moving, but irrelevant to the questions of whether Wakefield was unethical or whether vaccines cause autism.”

    Um, What IS his point then? Autism is so bad that murder/suicide is a reasonable solution? Perhaps I shouldn’t comment, because I don’t have a child with a severe disability. I could add that I have met several children with autism that don’t have a severe disability. But there are, I don’t know, millions(?) of parents with children who DO have severe disabilities that do NOT kill their child and themselves.

    If you use this anecdote, the only thing the book should be about is better support for CPS, family and mental health services.

    But I think this blogger says it better than me.

    http://autismparents.net/autism-murder-suicides-ill-take-your-kid-if-thats-what-its-come-to/

  6. Re-reading part of my post…I don’t mean to question that autism can be a severe disability, only to point out that it is not a foregone conclusion.

  7. Oh, I’m sorry, for folks outside the U.S. CPS- Child Protective Services.

  8. Harriet Hall says:

    provaxmom,

    No, I didn’t pay for the book. The publicists e-mailed me and offered me a free review copy! As a columnist for O, The Oprah Magazine, I get a lot of offers like that.

    Shelley,

    I had already thought of posting a shorter review on Amazon, just haven’t gotten around to it yet. Will try to do so today.

  9. David Gorski says:

    Heh. I’m betting that the publicist thought that someone writing for O, The Oprah Magazine would be sympathetic to Wakefield’s cause. You know what? If you can boil it down to such a short column, you should publish a review in O.

  10. David Gorski says:

    Oh, one other thing. My “good buddy” gave the Age of Autism post upon which this chapter was apparently based the Hitler Zombie treatment.

  11. Harriet Hall says:

    David Gorski said “you should publish a review in O.”
    O would not allow me to do that. They exercise tight editorial control: they only let me write about common health myths and they are very picky about which ones. I know better than to even ask.

  12. Chris says:

    This review definitely needs to on Amazon.

  13. aeauooo says:

    If anyone should ever suggest that I read Wakefield’s book my reply will be, “I usually don’t read fiction.”

  14. Harriet Hall says:

    I just submitted a shorter review to Amazon and linked to this post. I got a message that it would take up to 48 hours to appear. There are already a couple of negative comments there.

  15. Doctor Jay says:

    Thank you for the review. In teaching about vaccine controversies I feel the need to read a lot of the anit-vax material. It was going to really kill me to buy a copy (like it did to buy Jenny’s book). After reading this post I will read something for fun instead.

  16. Chris says:

    There is an interesting discussion on the JREF forum started by a veterinarian: Wakefield and the colostrum nostrum

  17. SF Mom and Scientist says:

    Like Stephen Colbert says, he loves “the truth” but hates “facts”.

  18. daedalus2u says:

    I have blogged about what I see as the mechanism behind the antipathy that some people (even parents) feel toward people with autism. I see it as xenophobia triggered by the communication difficulties of autism and mediated through the uncanny valley effect.

    http://daedalus2u.blogspot.com/2010/03/physiology-behind-xenophobia.html

    On a fundamental level the curebies are unable to see their children with autism as fully human. I think this is where the myth of changelings came from, from people who couldn’t recognize their children as human, and as their child, so they made up the rationalization that a non-human fairy child with identical physical appearance was substituted. That rationalization allowed them to act on their feelings of infanticide.

    This is where the “better dead than autistic” feeling comes from. People who express such ideas should be taken at their word and be dealt with very carefully by professionals with the expertise and authority to deal with such things.

    And SF Mom, yes, this is the essence of Steven Colbert’s truthy.

  19. daedalus2u – I’m not exactly sure if this is something specific to autism or if it just seems more prevalent in autism because of it’s high profile these days. I understand that, statistically, children with special needs are more likely to be abused than typical children, by their parents, caretakers or other providers. I don’t know if there has ever been a breakdown by diagnoses. I don’t believe there’s ever been a “cause” found. There are certainly a lot of confounders, the finacial stress and martial stress that special needs can bring on, genetics, behavior issues that may not be dealt with through typical parenting skills, family support systems that may fail with a special need, etc.

    But I completely agree that this situation needs to be dealt with very carefully by a professional with expertise and authority…Very good point.

  20. WilliamLawrenceUtridge says:

    I understand where the feelings about autistic children come from – I worked with them for nearly two years, though primarily severe cases. They are hard to work with, let alone live with. Self-injury, lack of communication, idiosyncratic approaches to many things – it’s a tough life. I only worked and dealt with young ones (less than 6) and found it frustrating. Working with neurotypical kids at the same time, the difference was astonishing and immediately apparent. For neurotypical kids, I was like a rock star – they loved playing with me. Autistic kids ran the other way, even though I could do all sorts of physical play with them my generally female coworkers couldn’t. It’s not easy, it’s frustrating, and I had the most respect for parents that simply accepted who their kids were and revelled in the joys their children found than the ones who kept trying to “cure” them with bizarre diets and walnut husks.

    It’s not an easy life, and trying to get your kid first to realize what talking is, and second that it actually has use, is difficult. As a worker, I got to leave at the end of the day. I can’t imagine what it would be like to have that 24 hours per day. Any autistic adult who has learned to “live around” neurotypicals probably wouldn’t appreciate the kind of life their parents had to live when they had an increasingly mobile child to deal with, whom you simply couldn’t treat the same way you could their brothers and sisters. ABA, the only treatment proven to work, is probably the most counter-intuitive way of raising a kid that exists, and takes years to see results. And for the kids, I’m sure it’s nothing short of maddening torture.

    Oy, so very much sympathy for everyone involved. Parents, kids, everyone except Andrew Wakefield and anyone else who shills fake cures and false hope.

  21. daedalus2u says:

    Michelle, research has been done and autistic children are bullied more than other special needs children. Bullied more by other children and also bullied more by other adults.

    The bullying is extremely damaging. It really does greatly prevent social development.

  22. WilliamLawrenceUtridge,

    My understanding is that ABA has not been proven. It’s being promoted more than is warranted by the research.

  23. tcw says:

    After reading, I guess I am not surprised he wrote this book–he lost his source of income, his medical license, why not milk the situation? Violating informed consent, making up research, taking kickbacks take less of a conscience to fulfill than writing this stupid book. He’s gotta make money somehow.

  24. daedalus2u – Yes, it does seem that bullying is particularly problematic for kids with autism spectrum disorders (also ADHD, I’ve heard, but I don’t know the stats). Just from a parenting perspective, I’ve read quite a bit about bullying, since my son has a cranio-facial and speech difference he can be the target of curiosity and insensitive questions but also in a few cases, older kids actually sought him out in order to make fun of him, obvious bullying tactics.

    It seems to me from observation, reading and consulting with our cleft team social worker and psychologist, that any child who is different is a target, but unfortunately children with social skills deficits lack the abilities to fend off the attacks and they also can lack the social network that can be protective in this situation (the friends who say leave him/her alone.) This is one of many reasons that social skills and coaching are a big emphasis in autism therapies.

    WilliamLU – I just wanted to emphasis that my criticism of Wakefield’s murder/suicide anecdote was meant in no way to negate the toughness that can come with parenting an autistic child. I think that anecdote should only lead to a discussion of CPS, family and mental health services. Honestly, I think the later is pretty reprehensibly irresponsible.

  25. Shoot, I deleted a section then hit submit.

    The last sentence should read ” I do not think the anecdote should be used to illustrate the difficulty of parenting a child with autism. Honestly, I think that use is reprehensibly irresponsible.”

  26. micheleinmichigan on bullying:
    “[A]ny child who is different is a target, but unfortunately children with social skills deficits lack the abilities to fend off the attacks and they also can lack the social network that can be protective in this situation (the friends who say leave him/her alone.) This is one of many reasons that social skills and coaching are a big emphasis in autism therapies.”

    Autistics think this is nuts. “Neurotypical children routinely seek out autistics to torment. There’s clearly something wrong with autistics. They need to be fixed.”

  27. Alison, Yes, from a broad social perspective it is nuts. In terms of the schools where alot (not all) of the bullying takes place and society, the view should be that bullies need to be fixed (it’s not all NT kids). I think that idea may be coming to the foreground, these days.

    Sadly, when parenting a child, you can not always take the predator’s out of the world. You can work with the school system and talk to the kids and parent, but your success rate is not going to be 100%, particularly since there always seems to be a new supply of bullies. You can only teach them to defend themselves from the predators.

    I am thinking of the situation in term of my experience with my son, I do not feel that he needs to be fixed. But I acknowledge that he has a unique and unfair burden. The fact is, kids are curious, occasionally mildly put off and sometimes mean because of his condition. An effort to change everyone in the world to handle the situation with more grace seems fruitless (although we do educate kids one at a time as best we can.) But, how he handles the situation can make a world of difference for him, so to a certain extent, we coach him and practice how to handle his unique situation. Just as a child with a missing limb might be coached to use a prosthesis or a child who uses a wheelchair will be coached in it’s use.

    But to be clear, coaching can only go so far. His complex speech is not reliably understandable to most strangers, so it is outside his range to handle a situation that needs intense verbal communication. In those situation I step in, or expect another adult too.

    So perhaps I went wrong is my orginal post say “social deficit” perhaps a better wording would be “social burden”. What do you think?

  28. Shelley says:

    Re ABA as treatment for Autism spectrum disorders:

    There is such heterogeneity in the presentation and trajectory of these disorders that it is unlikely that any one treatment plan will be effective for all difficulties with all children with autism.

    Nonetheless, behavioural treatments have shown very good effects. For example, see Aman et al (2009), Journal of the American Academy of Child & Adolescent Psychiatry, Vol 48(12), pp 1143-1154.

    This three-site, randomized, clinical trial suggests that meds plus parent training in behavioural management was more effective than meds alone in the reduction of self-harm, tantrums, and aggression.

  29. What do I think? That you’re right, as a parent and from a pragmatic point of view. Autistics just hate it that being bullied is somehow proof that they have social deficits but not that bullies have social deficits. That’s all. Doesn’t mean they don’t have to find ways of coping with bullying by [a subset of] NTs enabled by [a larger subset of] NTs.

    Michelle Dawson in particular makes a hobby of collecting psychological studies that determine that in particular situations autistics are more altruistic/ ethical/ honest/ perceptive and use those findings to come to conclusions about deficits in autistics (not in the selfish/ unethical/ lying/ dense NTs) because NTs are used as a baseline. Using NTs as a baseline for what is good and right means that anything that NTs don’t do well must by definition be bad. If autistics can see a pattern that NTs can’t, then pattern-seeing is proof of a perceptual deficit. And so on.

  30. Shelley,

    ABA is a particular program of intensive behavioural intervention that requires professionals at least 40 hours per week and has been the subject of much parent lobbying to get funding when they believe it to be their child’s “only hope.”

    I haven’t been able to find a free online copy of the online article you cite, but it may not be ABA.

  31. sirhcton says:

    I particularly noted one five star review, by “warriormom,” that began with “You should really READ it before you Disregard” and “I am still waiting for my copy and will share my opinion AFTER I have read it. . . .” I suspect that there will be a spate of Wakefield’s supporters offering five star reviews and their usual comments, with only a trickle of lesser ones.

  32. cedge20 says:

    @ WilliamLawrenceUtridgeon, thanks for your thoughtful and insightful, sympathetic response. I am the mother of a son with autism, high functioning. I’ve run afoul of parents with kids with more severe autism, and some parents of kids like my own. I’ve found that parents of kids with severe autism insist their parenting experience is unlike that of any other parent of a kid with a disability (i.e., harder), and other parents of kids with high-functioning still looking for a magic pill or diet to make them normal. My own son just doesn’t want me to “out” him.

  33. WilliamLawrenceUtridge says:

    There’s a fair amount of research showing that that ABA can help with autism, though I’ll admit that the issue is not absolutely closed. I invoke wikipedia!

    http://en.wikipedia.org/wiki/Applied_behavior_analysis#Efficacy_in_autism

    ABA isn’t a “cure” though – you can’t make someone neurotypical with ABA. The whole point is to teach skills that come normally and quickly to neurotypical using a sustained, systematic, tracked, reinforcement-based approach. It’s not easy, it’s not a quick-fix, and it’s hard to do well, but can be effective. The biggest limiting factor is finding effective reinforcement such that the kid wants to pay attention and increase the frequency of specific behaviours. It’s tremendously artificial initially, but aims to eventually builds towards real-world skills that “trap” the behaviour. Things like forcing children to ask for things, to make them realize asking for things (i.e. interacting with others rather than trying to do everything themselves) can actually be useful.

    The biggest problem I found while working with families was many treated the ABA as if it were a “cure” that could be administered 40 hours per week. It’s not. It’s an entire approach, that requires the parents to be part of the program. It’s not 40 hours per week. It’s 40 hours of specific, disciplined teaching, with parents essentially practising the skills with their child during the remaining waking hours. It’s gruelling, requires a total rethink of how to interact, is incredibly difficult, but is effective in teaching a child to communicate, reduce painful or injurious behaviour (to themselves or others), increase interaction in general. But without parents actively adopting the same protocols, which is very hard to grasp conceptually and actually implement, it tends to fail.

    That’s both my experience and the summary of the research I’ve seen. Unlike a lot of the walnut-husks-candida-mercury-and-testosterone treatments, it actually has empirical support. Not easy, not perfect, not 100% effective, probably not effective in all cases and brutally expensive, but it does work.

  34. WilliamLawrenceUtridge says:

    @cedge20

    ABA shouldn’t be (and can’t be) about making a kid “normal” (for one thing, what is normal? There’s no definition I know of). ABA should be about helping a kid be able to effectively interact with the world. It’s essentially training them in skills that tend to come naturally to others; Manners 010 (the 91 steps before Manners 101). I’m guessing the parents you ran into are more desperate because their kids are more difficult – high-functioning kids are definitely a lot easier to work with than the more severely affected. I never worked with other types of disabilities, so I can’t say who has it harder. Autism can be helped with ABA (so can other developmental disabilities) and it can possibly help them reach a higher level of functioning that doesn’t exist with say, Down’s Syndrome. Part of the problem might be that they have seen some kids, mildly and severely autistic, who were helped – which gives hope, the poison of accepting what can’t be changed. If your kid can talk, learn, interact with others, then it’s all about what makes him/her happy. If he/she can’t talk, it’s about some form of effective communication.

    In my experience (worst three words ever) a significant factor is how well the parents buy-into and adopt the ABA protocols. The more they do, the better the results. But of course, there are many confounds – the kid’s potential, neurodevelopmental arc, even the other treatments implemented (if you give a kid something that interferes with gut function and they end up having painful gas all day, that’ll pretty much destroy their concentration and focus). That’s experience though, not research, and can’t be trusted and can possibly simply be blaming the victims. Plus, ABA is brutal – one way of upping the effectiveness would be keeping the kid hungry all day, making food more rewarding. But no-one, no-one ever suggested this. It’s a tough life.

  35. DevoutCatalyst says:

    > and brutally expensive

    Yes it is. And we will be comforted to know that the long term care of untreated adults is brutally expensive and measured in decades. ABA is an investment, in addition to being the right thing to do.

    > ABA isn’t a “cure” though – you can’t make someone neurotypical with ABA.

    Ok, but watching the videos of Lovaas early clients, when they had grown into young adults — where you are asked, which young person is from the treatment group, which one never had a diagnosis of autism — you really can’t tell the difference, can you? Some of these kids make tremendous strides.

  36. DevoutCatalyst on ABA: “Some of these kids make tremendous strides.”

    So do some kids not treated with ABA.

  37. WilliamLawrenceUtridge says:

    @Alison Cummings and DevoutCatalyst

    I agree with pretty much everything you both said. ABA is a tool that takes a lot of money, experience, and the right therapist to do it right. By making autistic kids realize there is merit to paying attention to people, sounds and words, some can become essentially indistinguishable in regular conversation. Lovaas’ technique has been demonstrated via controlled trials. It’s not perfect or a panacea:

    http://www.ncbi.nlm.nih.gov/pubmed/19015734

    While this review suggests that Lovaas may improve some core symptoms of ASD compared to special education, these findings are based on pooling of a few, methodologically weak studies with few participants and relatively short-term follow-up. As no definitive behavioural or developmental intervention improves all symptoms for all individuals with ASD, it is recommended that clinical management be guided by individual needs and availability of resources.

    I’d agree with that. But no matter what, it’s a damned sight better than “biomedical” treatment, avoiding vaccination, or facilitated communication because it doesn’t aim at a “cure”, it aims at better functioning. It’s behaviourism; it’ll work, if you have an actual powerful reinforcer. ABA applies a developmental model and systematic set of goals, which can be a strength if you’re going for “normal”.

  38. You may not be going for “normal.”

    In one study, the more language-impaired children were less “autistic” than the high-intelligence, non-language-impaired children. A hypothesis might be that the fragmentation of abilities often seen in autism means that autistic children may be able to use language or socialize appropriately but not both. This study was small but the findings are not inconsistent with findings of other research.

    See http://autismcrisis.blogspot.com/2010/02/what-is-severe-autism.html for discussion.

    “But no matter what, it’s a damned sight better than “biomedical” treatment, avoiding vaccination, or facilitated communication because it doesn’t aim at a “cure”, it aims at better functioning. It’s behaviourism; it’ll work, if you have an actual powerful reinforcer.”

    These aren’t the only options. There are other educational approaches that can be used with autistic children.

  39. WilliamLU- I think you make an excellent point about the “right therapist”. The application of a particular theraputic method just can’t be standardized to the same extent that a medication or even a surgical procedure can be (although a surgical procedure may vary according to the skills of the surgeon.)

    My son has worked with 6 speech therapists for articulation and language. They have generally been using very similar methods, but personality, tone and sensitivity of timing and communication abilities have all been different. It’s clear that his participation level and improvement level have varied depending upon the therapist. This is not just a matter of a competent therapist, I think there is also personalities that just work better together. I think this effect is particularly strong in pediatric (and maybe geriatric) therapy.

    This is not to say that you can’t use science to find effective therapeutic methods, but I do believe that it is not as cut and dry as the evidence for a drug or similar.

  40. Alison Cummins

    “You may not be going for “normal.”

    In one study, the more language-impaired children were less “autistic” than the high-intelligence, non-language-impaired children. A hypothesis might be that the fragmentation of abilities often seen in autism means that autistic children may be able to use language or socialize appropriately but not both. This study was small but the findings are not inconsistent with findings of other research.

    See http://autismcrisis.blogspot.com/2010/02/what-is-severe-autism.html for discussion.”

    Here is what I got from the article. Of the 25, 10 year old children in the study, 16 tested to be in normal language range, 10 tested to be language impaired. On the “Social Reciprocity Scale,” SRS, the children WITH language impairment tested higher than children without. The author of the article (not the author of the study, which had a different intent) believe if one bases autism severity on SRS scores, one might conclude that the 10 language impaired children have less severe autism.

    Two points – Firstly, The author of the article is using data gathered with a different intent “magnetoencephalography to compare auditory evoked responses in autistics and nonautistics” I would guess this could be to test of autism carries a higher risk of auditory processing disorder. (Ear’s work, brain doesn’t proccess as well.)

    Auditory process disorders can be associated with speech disorders, so firstly I’d like to see the results of the study…do the children with language impairment have a higher incident of auditory processing disorder?

    Regarding the hypothesis that autism children can either develop better language skills or better social skills, not both. I guess one can not say unless the idea is studied much further. I personally would feel there are other good explanations (that would also need study). 1) Children typically develop strengths to compensate for weakness, so, the language impaired children may have developed stronger social reciprocity to compensate for their language deficits. 2) The two sub-groups have different neurological dysfunctions that have been incorrectly grouped under one umbrella “autism”.

    One reason there is such a strong push for early intervention in speech and language is due to the possibility that the ages 0-3 (or slightly older) are critical periods for neurological development of language skills.* So the precautinary principle suggests, if there is a high risk that a child not exposed to language early in life may develop a decreased language ability, then we should do what we can to maintain a normal level of language exposure and participation.

    Also, this appears to be a time when neural reorganization capabilities are higher. So one might reasonably assume that this would be a better time to push the limits of a hypothetical language/social interaction balance than later in life.

    *http://en.wikipedia.org/wiki/Critical_period

  41. Wow, my post is fraught with poor punctuation and typos. Sorry all.

  42. Note: tried to read the study that the autism crisis article was based on, but it exceed my science vocabulary comprehension abilities. :)

    http://www.ncbi.nlm.nih.gov/pubmed/20063319

  43. Given that language is so important, why choose ABA and not other language and communication-based interventions? ABA is not the only one. PACT, for instance, is a communication intervention that parents and children are very happy with, though it does not make children “less autistic.” One of the most interesting things about PACT appears to be the quality of this study, which (I hear but cannot support) is superior to many autism-intervention studies. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)60587-9/abstract

    If early intervention is so essential, how does it happen that very autistic people who never received ABA are able to actively participate in society?

    I am extremely ignorant about this area, so the only point I feel at all comfortable making is that the statement that “ABA is the only treatment proven to work” is not uncontroversial. There are other plausible interventions with research support and multiple possible interpretations of “work.” And the popular emphasis given to early, intensive ABA as being the only possible hope for an autistic child doesn’t seem to be be justified by existing research. It may be in some cases, but we don’t know that yet.

    I am not saying that nothing about ABA is good or proven effective for anything. Just that the claims for it often seem to overstate the research.

  44. eskrav says:

    I don’t think that ‘moving’ is an appropriate description for an exploitative account of a child’s murder.

  45. woofighter says:

    Dr. Hall’s review is now up on Amazon.com. If more of us click “helpful” on this review, it will be seen by more Amazon.com users. The first comment to her review has already pulled out the “shill” ad hom.

  46. Chris says:

    Then there is the Gish Gallop list of studies. It includes a paper that Wakefield was a listed contributor (twice, 2 and 18). Plus papers from non-reviewed journals like Medical Hypothesis and Autism Insights.

  47. FreeSpeaker says:

    When I first saw the title to Wakefield’s book, Callous Disregard, I knew it was autobiographical, since it is the single, most ironic literary title since Gutenberg came home from the patent office. I wrote about it at my blog, WakefieldWatch.

  48. Calli Arcale says:

    Maternal instinct… has been a steady hand upon the tiller of evolution; we would not be here without it.

    Wakefield said *that*??? Okay, I believe he said that, as it’s perfectly in line with the story he’s been selling, but it’s ridiculous. Maternal instinct has been a steady hand? Sounds like he’s trying to take us back to the Victorian era, when it was believed that men and women moved in separate spheres, coming together only as neccesary for the perpetuation of the next generation, and the greatest evidence offered for why women should be chained to the household was their obvious superiority at the role: they had “maternal instinct”.

    Maternal instinct is largely a myth. Mothers bond to their children, just as fathers do, but the rest is just born out of neccesity — which they do say is the mother of invention, and in this case, it’s the mother of what we call “maternal instinct”.

    That said, there are some parental instincts out there, and it is instructive to see how evolution has shaped them. Parents (in species with parental care) will fiercely defend their offspring. In some cases, they will improve the odds by killing off unrelated young. (Several bird species have been observed doing this.) The males of several species of fish are devoted fathers, at least until the fry are old enough to feed themselves. And then there is what they do with the unfit. Many species practice retroactive birth control — hamsters, for instance, will eat their newborn pups if they do not feel there are enough resources for them. This is good for the species, but pretty tragic for the pups. Many will also kill or at least ostracize disabled young, and in some species, this is taken to the extreme such that many offspring will be born but only one will survive to adulthood, the result being that the parents only expend effort on the fittest offspring. So the maternal instinct provided us by evolution is not neccesarily kind or loving.

    If we adopt the sort of maternal instinct which has been on the tiller of evolution, we would be killing our autistic children. I do not think that Wakefield has chosen this metaphor especially well, but considering how he treats them, perhaps it is more apt than he wants us to realize. After all, the whole of the anti-vax/autism recovery movement seems to feel that autistics are not worthwhile people unless there is the hope of recovering them. Maternal instinct, if we go back to the way that plays out in nature, would have them dead, but Wakefield and his ilk offer another path: the child can be saved, so the child is not autistic anymore, if only you follow them. Once you have adopted this mindset, it is impossible to think of questioning it, because only a monster wouldn’t want their child saved if it is the only way to make them worthwhile. Accepting their disability would be like letting one eaglet eat its crippled sibling.

    Mind you, if you think about that in light of his opening anecdote (about the mother of an autistic child who resolved her issues with a murder-suicide), perhaps it isn’t an ill-chosen metaphor at all. Perhaps he really does think the maternal instinct is to either cure the child or kill it. Yet those who read it will think “oh, he is so kind to mothers to say such a wonderful thing about them.”

    I’m a mother, and I don’t want him saying that sort of horrible thing about me. I want my father’s paternal instinct to get some recognition (’bout time!) and I want it understood that evolution doesn’t make us nice. It makes us live. Anything beyond that is gravy.

    micheleinmichigan:

    Alison, Yes, from a broad social perspective it is nuts. In terms of the schools where alot (not all) of the bullying takes place and society, the view should be that bullies need to be fixed (it’s not all NT kids). I think that idea may be coming to the foreground, these days.

    There’s been a lot of focus on anti-bullying measures aimed specifically at the bullies, but they have been largely ineffective. I was intrigued when I read about schools starting to take a completely different tack by realizing that there aren’t just two parties here, the bullies and the victims. There is a third party, and it is the biggest and most powerful party of all: the onlookers. We’ve all known that since the tragic tale of Kitty Genovese (raped and murdered while dozens of people looked on, none of whom called 911, decades ago), and yet we’ve largely failed to apply that knowledge, beyond a sort of collective guilt that we allow things to happen, and a strong discomfort with the possible solutions to the problem. (We don’t want to all become vigilantes.)

    Bullies can operate in privacy, but that’s not what usually happens. Usually there are witnesses, and these witnesses almost never report it, much less speak up at the time. Friends will usually defend someone from bullying, but even strangers will feel discomfort when they witness bullying; they could defend the person as well, and it doesn’t have to involve anything physical. Most bullying starts small, with namecalling. If passers-by spoke up at this stage, it might break the cycle before it becomes dangerous to intervene. Yet few speak up. Some schools are starting to reach out to bystanders, to give them guidance what to do if they witness something like this, becuase most of the time, the reason people don’t get involved isn’t that they don’t care. It’s that they are trapped in indecision, unsure of what to do, and then the opportunity has passed.

    We’ll have to wait and see if it’s any more effective than all the other things that have been tried. It can’t be any worse than the “empowerment” and “esteem building” stuff from the 80s and 90s that backfired spectacularly, producing children incapable of dealing with failure.

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