A Suggestion for Dr. Wakefield
September 9, 2007 by Kristina Chew, PhD
Filed under Health
The Autism Research Institute (ARI) and Defeat Autism Now! (DAN) are asking for “notes of support” to be left on their website for Dr. Andrew Wakefield, the British doctor who first reported a link between the MMR vaccine and autism and who seems, in the face of evidence disputing such a link, unable to admit that he was wrong. Dr. Wakefield has been charged with misconduct that he undertook “research between 1996-8 without proper ethical approval” and that he allowed “investigations such as colonoscopies and lumbar punctures to be carried out on children, against the patients’ interests.” In July, he was called before the General Medical Council for a disciplinary hearing.
The ARI’s appeal for messages of support for Dr. Wakefield is not the first online testimonial to the doctor: Nigel Thomas, the brother of two autistic boys in the UK, has also collected many signatures on an online petition. Kevin at Left Brain/Right Brain and Orac at Respectful Insolence have both posted the messages they send to the ARI, who only seems to be (as of this blog posting) publishing messages that are clearly grateful to and in support of Dr. Wakefield as a sort of “brave maverick doctor” and to decry “scapegoating” of him. Kevin and Orac ask how the doctor can continue to stand by his claims of an MMR-vaccine link after Dr. Bustin at the Autism Omnibus trial “showed very convincingly that [his] finding of measles DNA sequences in biopsy specimens from the guts of autistic children is virtually certainly a false positive due to shoddy research technique.”
I too have more of a question for Dr. Wakefield, and for the ARI: Are they not aware how the theories of a link between autism and vaccines, or something in vaccines, has distracted attention from what are truly pressing concerns for autistic persons and their families? These sorts of theories keep the discussion about autism focused excessively on what causes autism, rather than on what an autistic child needs now: The right kind of school situation, understanding from the public and from society which still look askance on the “different” and the not “normal,” and much more. I understand why, from an emotional and even an epistemological point of view, parents wish to know “why is my child autistic.” It is not Dr. Wakefield who is so much in need of support as families who are taking care of and seeking the best for their children every day, and autistic persons themselves, as they make their way in a world that is not made for them.
Perhaps it might be well if Dr. Wakefield wrote a personal message of support back to each person who has written, and petitioned, in support of him. It would be a gesture of good faith.
And I hope Dr. Wakefield can also respond to Kevin and Orac.
I am sick of all this vaccine discussion, it’s indeed a waste of time. I’d much rather be reading articles that suggest educational strategies to help our children develop better. For instance, I’ve followed the path of your link to research on reading patterns in autism, which lead me to other study on hyperlexia, and there’s still so little that they know about it. They still haven’t come up with a more effective approach to improve reading comprehension for ASD kids.
Before I get all Benthamite, I want to note that the pillorying is probably good for public health generally, though as you’ve (I think it was you) pointed out, there are elements of myth involved that won’t be so easily undone among parents who refuse to vaccinate their kids.
Here’s the thing: As someone with formally-undiagnosed Asperger’s — though in writing that I’m dubious of the condition’s existence — anyway. As, er, me, I’m very happy not to attempt to eradicate the conditions that’ve made me myself (though, to be fair, I don’t know what it might’ve been like to be otherwise). But I happen to be pretty cheap. I didn’t require special services in school, unless you count the district’s gifted program, and I even saved the public a few grand by bailing early. Haven’t received any state/fed aid beyond EITC for the low-income single-mom gig.
But there’s been a sharp increase in diagnosis of kids with autism that requires extensive public services — some readers here point out that the services will be necessary through adulthood. So it seems to me there are two choices, or some combination of the two: Either make services for autistic people much less expensive, or try to lower the incidence of autism that’s severe enough to require public help. Which means looking for likely causes. From a societal perspective, the needs of the kids today are important, but they can’t distract from the longer-term picture, either.
Incidentally, Kristina, I think it’s a very good thing that most people aren’t wired like me. It’s one thing to say that “the world isn’t made for me”, which is true. But I don’t think you’d want to live in any America I’m capable of making. That America would be a poorer place, and a harder one to struggle by in. We need people who can get up every day and go to the same job over and over. Who care about the paperwork. Who don’t miss the content of entire meetings because they’re mesmerized by the way people’s mouths move. Who really like contact with others for hours on end. Who are less literal, and who don’t work in short California-or-bust spurts and then collapse for a long time. Who understand that not only do the front and back ends of the factory need to go together, but that there is a factory.
I live well largely because other people manage to put together a very pleasant, tidy, reliable world. Sometimes I can contribute, other times no. And it’s very tough raising my daughter. She appears to be quite social, certainly more social than I was at her age. There’s a whole world of social stuff I don’t really connect with (or notice, apparently), and while I push it every day so she can get some of whatever she might need, my main solution is to hand her off for several hours a day to people who are better at it. This is really not a great thing. As wonderful as she is, as much as I love her, as much fun as we had tonight poring over an anatomical atlas at bedtime and talking about gas exchange in the lungs — if I’d recognized this in myself earlier, I don’t think I’d have had any kids. I don’t think it’s fair to them.
So, you know. If there’s an increasing incidence of people like me or people with even more difficulty getting by…well, yeah, I think we’d best be looking for causes. In isolation, sure, it’s pretty groovy being me. But we don’t look to exist that way.
I’m all right with however anyone is wired—-my husband has ADHD (sometimes severe) and Charlie is Charlie—-some things are very, very hard for them in the same ways, and in ways that I am at ease with. But both have abilities that I simply lack and we stumble through our days and learn from each other, make mistakes, forge on.
Charlie’s teachers definitely do a better job at this point teaching him than I do…..
Amy, you mention that your best solution right now is to “hand your daughter off” but you didn’t sound like you feel too great about that.
Well, that’s my best solution too. My hubby and I are both more or less NT, very social and will talk your ears off. So, we’re often at a loss as to how best give Bobby what he needs, given that he is mostly opposite of how we innately operate. And as Kristina said, our local pre-K teachers are far better at what Bobby needs now than we are (and we were both education majors, but for older kids). And I have to admit, I breathe a sigh of relief most mornings when Bobby leaves on the bus, because he’s big and strong and crashes into everything and everyone and I’m little and tired!
It would be great if services for our kids (NT or not) were more accessible and less expensive, but I’m not holding my breath. Incidentally, I have a certificate in gifted education and I found that the techniques intended to nurture gifted students will *gasp* also work very well with the “average” population. Who would have thunk it? So, I’d also think the same holds true for a lot of the techniques that special ed teachers use could also help NT students with small, specific needs. For example, if as a kid I’d had OT for spacial-relation problems, I might not have been the perennial last picked during Phys Ed. I *still* walk into walls and have fallen badly twice in the last month – yes, I’m very clumsy and don’t know where my body is in space.
I guess it’s the “What’s the underlying issue?” approach that I see in Bobby’s teachers that would also transfer well into the typical classroom. Maybe broadening the application of teaching approaches across all students would help our kids learn, in general??
Anyway, to the point of the original post, while I’d like to know *why* Bobby is how he is (I’m curious), I agree that spending money on educational and related therapeutic strategies targeted at specific goals will get us the most bang for the buck. Like, teaching Bobby to stop when we say STOP so he won’t run into the road…but then that’s a goal for EVERY parent of a 4 year old!
End ramble…
Hi, Melanie. You’re right, I don’t feel great about it, but mostly my concern is that she may feel rejected when I hand her off (not a problem so far) or — more importantly — that there’s a world of social education she’s not getting at home. Again, I do things to compensate, but there are long hours with just her and me, and of course she learns to exist in my world. Which would be great if it bore much relation to how most other people live, but I don’t think it does, really. There’s a continuous social education that other kids get, and for her, it’s not there, and that effect is amplified by the fact that she’s an only child with a single parent. I also have to assure her periodically that when I _______, I don’t mean “You’re doing something wrong,” but if that’s what the signal means in the rest of the world, it’s got to be a confusing thing. Fingers crossed.
About tools to help NT students with various things — again, I think we’re wandering from the main purpose of the schools. They can’t be everything, can’t do everything, even if you throw out NCLB. If you can make the OT part of gym, then maybe you have something. (Maybe. I’m a pretty good klutz, and did significant spatial-awareness training by teaching aerobics and flying for several years. I still walk into walls. You have to be paying attention, is the thing, and if it isn’t natural, I suspect it’s just not going to happen all the time.)
I suspect gifted ed might do well to import professors who are unusually kind and actually know and love their subjects. The biggest problem I’ve seen in gifted ed is that the teachers, however trained, are not themselves gifted and entrepreneurial, and don’t know how to do that combination of driving exactitude and play that characterizes the sparkiest, deepest learning. I wonder if, in schools with nearby universities, TAG programs could partner with profs across disciplines in writing ed grants that’d earn a 5% release or so for the profs to go teach in the public schools.
Anyway — the point of the research isn’t to find out causes just to satisfy curiosity. The point of the research, if autism must be an endless and growing expense, is to reduce the incidence of autism. Which is fine with me. Finding other ways to reduce the costs of autism is also fine with me.
ARI – the parent corporation of DAN! – has good reason to wish Dr. Wakefield well. After all, they have much to lose if Dr. Wakefield goes under.
They have supported and promoted him for nearly a decade despite a growing mountain of evidence that he wasn’t very ethical in obtaining research subjects and wasn’t very scientific in the way he conducted and published his research.
I note that Dr. Stephen Edelson, new titular head of ARI, has stated – correctly – that Dr. Wakefield’s article in The Lancet has not been retracted. Again, that is technically true, since at least two of the authors still refuse to retract it. Apparently, The Lancet isn’t yet bold enough to retract it without their approval.
That said, the article is all but dead, except as an historical footnote. The research behind it has been exposed as flawed and corrupted by a number of sources. Only those who are ignorant (or truly desperate) would cite it as proof of anything other than the corrosive effects of wanting so badly to be right that the truth is ignored.
Prometheus
Amy, there isn’t a parent on earth who can singlehandedly meet all of her child’s needs. That’s why they say “it takes a village to raise a child.” Recognizing how your child’s needs differ from yours, and finding other people who can help to meet your child’s needs, does not make you a bad parent. To the contrary, it means you are a responsible parent.
Children always differ from their parents in some ways. That’s diversity, and it is generally a good thing. If you had a child who was much more athletic than you, I expect you would “hand her off” to coaches in whatever sports she enjoyed. If, on the other hand, you enjoyed sports but had a daughter who liked frilly girly things, you would take her to dance classes and so forth. Parents make decisions like that all the time. You wouldn’t think of yourself as flawed because you had more or less interest in sports than your child, and you shouldn’t think of yourself as flawed because you’re not as interested in social stuff as your child, either.
And yes, it’s a very good thing that most people aren’t wired identically… no matter what sort of wiring we might be talking about. We need our differences to make life more interesting and to grow and evolve as a society.
Bonnie, I appreciate your attempt to smooth things over there. Rest assured that I don’t see myself as flawed for not being NTishly social. But I do recognize that it’s a liability for my daughter and potentially hurtful to her day-to-day, and that it’s permanent.
I don’t think it’s quite the same as having different interests. All of you who raise autistic children put enormous energy into trying to understand your child and make the environment comfortable, or at least tolerable, for them. They may not react or respond in ways that feel right to you, and you’ve learned to accommodate that. The difference there is that you are the adults in the picture. You’re able to recognize that you need to make accommodations, and you have a core sense of self that supports it. When a young child is the one who has to make the accommodations, there’s no such ground for the child to stand on. There’s no awareness or ability to separate self from situation. And the child needs things from the parent to a degree that parents do not need from children.
You might say that your own children are in a similar situation. This is true. However, the “painful social behavior” that they might experience from you is likely to be helpful in the sense that this is how the rest of the world works, too, and can help them get along. The same is not true of what my daughter gets from me. What she learns as social standard from me is not likely to be helpful; on the contrary.
For instance, you’ve here said something meant to be reassuring, a hearty and inclusive pat on the back. I am at great pains to show you why what you’ve said is kindly meant but wrong. Which is the more helpful social skill?
In general people don’t end up in therapy saying, “My mother never did gymnastics with me.” But they do go in talking about parents’ ASish behavior, the socially odd world they lived in, and a sense that their parents were rebuffing. My takeaway from that is that something in it’s hurtful.
(I don’t mind a bit handing her over to ballet and gymnastics people, and I don’t think she suffers from my inability to do handsprings. Social behavior is something more pervasive.)
Similarly, while I appreciate the “it takes all kinds” sentiment, you really would not want a society with a heavy concentration of people like me. You’d be much dismayed by the lack of reliability, services, money. Again, I like my mode just fine — for me. It’s not great for a society, though, and if it’s on some steep rise, then I think we should find out why. You wouldn’t want a country run by artists, either.
…you’ve here said something meant to be reassuring, a hearty and inclusive pat on the back. I am at great pains to show you why what you’ve said is kindly meant but wrong. Which is the more helpful social skill?
Depends on the circumstances, I’d say. If you’re on a sinking ship, and all the nice social people are busily reassuring one another that nothing is wrong, that’s not particularly helpful.
I should mention that I am autistic. My husband and daughter are very social, whereas my son takes after me and spends much of his time on the computer. Both kids seem to be well adjusted, and I don’t expect that either of them will end up in therapy.
It’s true that when parents raise their children in a minority culture, whether we’re talking about autistic families or any other culturally distinct group, the children are likely to have a harder time learning the ways of the majority. However, assimilation works both ways, and minority groups also contribute to the richness of the mainstream culture.
As for whether autism is on a steep rise, I think it’s more likely that we have had an increase in diagnosis but not in actual prevalence.
I am an Aspie from a family of Aspies.
You all live in a world influenced by us and do not even know it.
My father was on the team of military cryptologists who hooked an electronic ‘enigma machine’ to a satellite (in the 60’s) that makes infinite code-still used by the US, Great Britain and Australia.
My uncle (dad’s brother) has art hanging in the Met and currently has a corporate contract for art design for a large chain restaurant. He is almost 70 years old.
My other uncle is a genetic engineer for oranges. Every time you buy an orange you are eating a product an Aspie helped design.
Tesla, Turing, Einstein, and Beethoven are suspected Aspies.
Steven Spielberg, Keanu Reeves, and Dan Akroyd are all confirmed Aspies, and we probably have Bill Gates too.
Lots of NT people have a hard time with employment, time management, and parenting. I do not think that taking Asperger’s away from some people would leave them with the same problems just different excuses.
I am an auctioneer. I have an assistant to keep me on track with things I am weak at. That is why my boss hired her for me. It is called delegating.
Best Wishes,
~Sarah
Kristina
We don’t need to know what causes autism you say?
Of course we do. Only by knowing the cause can we stop others becoming autistic.
It is certain that the cause is toxic and this toxin will be one that can invade the brain and destroy the nerves.
We have the ideal candidate in thiomerosal and simply we need to remove this from infants.
This we have not done and doctors have been giving mercury containing vaccines without realising.
Also we now have the spectre of merury containing flu vaccines for children.
All this obfuscates the harm of mercury and in some states it is illegal to use these vaccines.
Mercury will not be the only culprit and mercury will not just cause autism but a spectrum of illness.
The chemical companies cannot pay the bill for this and so we have open warfare and information and disinformation.
We do not even know in this secret war who is on which side.
Dr Verstraeten is the genius who brought the mercury and the proof of harm to our notice.
He now works for the vaccine industry and has been neutralised at no risk to himself.
Two studies have shown that when the vaccines are not taken in the first two years of life there is almost no risk of autism.
In the debunking of O’Leary and his undergraduates we forget all the other evidence of harm.
Before 1968 or so we had little autism and those cases we know often turned out to be lead a close relative of mercury.
We also had no SIDS.
This is another manifestation of using brain destroying chemicals. Take out the signal to the heart and lung and what happens?
Why do we see full toxic chemical analysis at SIDS without any analysis of brain destroying chemicals?
Analysis is not full but partial like most other analyses in this fiasco.
John Fryer M Sc B Sc Advanced Analytical Chemist
Bonnie, when they’re at home, your children have two parents, one of whom is not autistic. Which is great. My daughter doesn’t have another parent at home who can mitigate, nor is she likely to. (wrt Sarah, there’s no one here to delegate to. I’m it.)
I’m not especially concerned with my daughter’s contributing to the richness of majority culture, which I think is too much to ask a young child to carry anyway, especially if that burden is painful or harmful to her. I’m concerned, for instance, with her attempting to connect with me in a way that’s normal and good, and meeting with rejections she hasn’t earned and which I’m not even aware of.
When I was involved in my ex’s care, I used to watch the “growing up with a parent’s mental illness makes kids more caring and thoughtful people” talk in the social-work world, and came to think it was criminally cruel. There was a scene in a recent Cymbalta ad — a grandmother wrapped in depression at the sink, the grandson quiet, watching her anxiously, and puzzled. There’s a leaden sense of very slow dread, and the little boy was trapped in it. It was, I thought, painfully accurate. It isn’t good for anyone to live in an environment like that, let alone children. (If you need convincing, there’s a good deal of documentation now, and some large longitudinal studies.) Nevertheless, when it came to the question of “should people with serious mental illnesses raise children?” the primary consideration in the mental-healthcare worlds I toured was not the effects on children, but the benefits of having children to the parents, and the parents’ rights, the right of the mentally ill to be “whole people”. I think this is unfortunate, and not very far off from having another child so you can harvest its blood or organs for an ill sibling, and make the sibling whole.
I don’t see autism/AS as mental illness, but if there’s a good chance that the effects on children will be profound and negative, then I’d say “Skip it. Don’t put people through pain like that.” I can see, btw, that this is going to devolve into another “odds” discussion, where people indignantly reply that you can’t tell ahead of time what will happen, and I say of course not, but you have reason and odds to work with, and they can actually work pretty well.
Sarah, no one here is disputing that people with AS contribute to society. I’m talking specifically aboutthe effect on society of maintaining a large (large currently undefined) group of people who, on balance moneywise, take. If you want an illustration of that, you have only to look at the Social Security problems ahead. We already have a serious problem in progress with a very large group of people who are going to be retired for 20 years or so on average, drawing income and benefits. I’m sorry to reduce it to that, but even social tapestries have to be paid for.
I have to pay taxes to support people who are NT but for various reasons are living in low income housing and having many children at a young age with men who are criminals. They carry AIDS and spend most of their life in prison.
There are many more of these people than there are of Autistics who make up less than 1% of the US population.
The reason that the AS population is undefined is because many of us are educated and employed. We do not require social services. Since we do not need government help there is no need to track us. I would declined to be tracked.
What is being done about the vast number of people in inner cities who sell drugs, make babies, and kill each other for fun and profit all the while collecting food stamps and public health benefits?
You know the ones with the fancy hair and long manicured nails driving an SUV and complaining about the line at the free clinic.
That is my tax dollar too. They out number me. They take from the system more than all Americans with disabilities combined.
Best Wishes,
~Sarah
Amy, there is no factual basis whatsoever for your assertion that autistics “on balance moneywise, take.”
The taxes and charitable contributions from Bill Gates and other successful autistics are far greater than the cost of services for every autistic person in America who needs them.
BTW, my father, a successful small business owner, is autistic. I’m not aware of any “profound and negative” effects from being part of his family, nor do I feel that my mother “mitigated” any such effects.
The parent-hating, narcissistic whiners on Judy Singer’s website are not representative of people with autistic parents in general. I’m sure they had plenty of other reasons to gripe about their parents before the Asperger’s diagnosis existed; it just gave them another convenient excuse.
I am thinking that this discussion is itself a sign of how increased awareness about autism has led to an increase in diagnosis and to recognizing autistic adults. My relatives who are on the spectrum and who work in a certain part of California have certainly made their contributions to the economy.
I was just thinking some actual numbers would be good.
Sarah, there is an almighty struggle going on to rid the population of addictions, various antisocial behaviors, plain old-fashioned laziness, illiteracies, and many of the other things that keep people on the dole. So your comparison breaks down there.
The “group of people” I was referring to, by the way, is the group that requires extensive services, like 1:1 school aides and multiple therapies. I don’t think it makes sense to lump all autistic/AS people together for this; nobody’s worried about the Gateses of the world, or even about people like me, who will probably come out more or less a wash. You might think of the net-consumer group as an autistic subgroup.
If net-consumer groups are growing relative to population, that’s not a good thing. If we understand what causes autism, then maybe we can manipulate things so that a child who might be seriously disabled comes out, well, more like me instead. Or not. But what you don’t want is for a group of net consumers to grow, and if the media reports are to be believed (which is why actual numbers would be nice), this one is growing — and how significant a problem that is depends, again, on the numbers. But one step in stopping it may be to find out what causes autism.
Bonnie, if your mother wasn’t autistic, then she mitigated by existing, and by demonstrating what the non-autistic world sounds like. Keep in mind, too, that if both you and your father are autistic, his environment and behavior might have been just dandy for you. If you had been more NT, that might not have been the case, particularly if he’d been raising you alone.
Amy, I think you noted this some posts back, but (if I may ask) what is your occupation? As that is a prviate matter, possibly, please don’t feel you have to answer.
OK, I’ll agree that in a two-parent family, each parent mitigates the other’s weaknesses. I tend to be too easygoing as a parent, both because that’s how I was raised and because I don’t notice some details by reason of being autistic (my husband just pointed out to me last night that our daughter hasn’t been bringing her book bag home from school this week, which probably means she’s slacking off in her studies). My husband, on the other hand, tends to micromanage the kids, which is how he was raised (when I met him in college, his mother was calling him every night to make sure he was doing his homework) and I mitigate that by pointing out when I think he’s going too far in that direction.
Here’s a link to a paper by Dr. Eric Fombonne, an epidemiologist who has studied the increase in the number of autistic children who are receiving extensive services:
http://www.uoguelph.ca/oaar/fombonne-prevalence.html
Such children were more likely to have other labels in the past. Fombonne points out that “during 1987 to 1994, diagnostic substitution occurred; thus, while the prevalence of autism increased from 5.8 to 14.9 per 10,000, the prevalence for mental retardation decreased from 28.8 to 19.5 per 10,000. These trends then cancel each other.”
I see it as a very good thing that these children are now being provided with the services they need to learn effectively and to be integrated into society, rather than being written off and warehoused as they would have been in past generations. Even though the services are expensive, this is a social investment that is likely to pay for itself in the long term as these children grow up and become productive workers.
Kristina, I don’t mind telling (and did a few posts back), but I’m more curious now about your curiosity.
Why the interest?
Bonnie, that’s a good point — if the increase is partly due to shuffling diagnoses, but the cost of services is the same, it’s not as serious a problem.
I’ve written about the “social investment” rhetoric elsewhere, but to recap I don’t think it’s persuasive, because it misunderstands what investment is and how it works.
amy, just curious about where you’re coming from! thanks for all your thought-provoking comments.