Its no secret. I’m firmly of the opinion that Lenny Schafer is a borderline bigot. He recently wrote an open letter to his Evidence of Harm list mates which I repeat below:
I should like to provide a summary to this encirculing (sic) discussion. The autistics condemnation of those who seek a cure for autism rely on two rhetorical devices to do so. First, is their special, cultural and vague definition of autism. The other is a cynical definition of “cure”. The autistic movement indeed condemns parents who do not agree with their creed. They have joined legal efforts to restrict the funding of ABA programs in Canada and often engage the media to attack parents who seek cures for their children.
Let there be no mistaking it, the “don’t cure autism” rhetoric is little more than a vehicle for parent bashing. This is both irrational and unjust. It may not be Stephen Shore’s intent to condemn anyone, but the movement for which he attempts to apologizes for does; it is not so easy to weasel away one’s personal support of such efforts with platitudes about helping people. This is not just about honest differences of opinion; this is about a creed who intends to interfere with the quest of parents to relieve their children from the misery of clinical autism.
Its the same old stuff from Schafer. Clinical autism. Yeah. Parent bashing. Right. He acts out of fear and a closed mind. By contrast, here’s a recent post from Wade Rankin. Its a long post which needs to be read in full but the last two paragraphs spoke to me:
In the biomedical community, we often throw around the word “cure.†When I use that word, I know what I mean and most other people who practice biomedical know what I mean. We are seeking to alleviate the dysfunctional aspects of ASD in our children. We will never alter the genetic makeup of our children, and to the extent genes make them autistic, they will remain autistic. I can live with that. But I believe that one or more environmental insults has acted in concert with my son’s genetic makeup to create stumbling blocks that keep him from using all of this gifts. I cannot believe I am wrong in trying to reduce the effects of those environmental insults.
On the other hand, when I am confronted with the eloquence of Kathleen Seidel or the extraordinary testimony of an adult with autism who wants no “cure,†I have to realize that the issues surrounding ASD are not easily addressed by one-size-fits-all answers. Could the “cure†we seek help other people who reject biomedical interventions? Perhaps, but that’s not a necessary given. More importantly, that’s not my choice to make.
How refreshing. Someone at least prepared to question and look. I know I’ve thought differently of some of the people involved in the Biomedical camp since encountering Wade online. I don’t agree with his use of the word ‘cure’ and I wonder if he were autistic himself whether or not he would see enough of his behaviour as dysfunctional enough to _require_ a cure but I also believe he acts out of a genuine desire to help his children. I genuinely do not know what desires move a man like Lenny Schafer. All I know that reading what he writes is like feeling a cold wind on one’s spine. He’s become the poster boy for intolerance.
The best thing about Wade is that he is obviously a man who understands the power that words carry. Unlike Schafer who uses his words as a blunt weapon, Wade is often reflective to the point of hesitancy when trying to explain his thoughts. Its so refreshing to hear someone from the Biomed camp describe gettingthetruthout.org as ‘extraordinary’. I shudder to think what Schafer would describe that site as and I genuinely have no desire to hear his thoughts on the matter.
The Evidence of Harm maillist recently ‘outed’ Orac. They published his real name, contact info including tel number on EoH. Various hangers on repeated the information on their own sites. Schafer did nothing to prevent this although he recently become apoplectic when Jerry Newport of AutAdvo apparently did the same to him. maybe he thought it was just revenge.
However, a lot of EoH members protested this stupidity and questioned the motives of the EoH attack dogs like Ashleigh Anderson, who did the ‘outing’. A few people left expressing disgust with what the list had become.
EoH maillist is crumbling. I hope when it does crumble that out of the rubble steps a man like Wade to create a group that is capable of thinking instead of blindly lashing out. He is an honourable man with honourable intent. A lot of people on EoH would benefit from a leader less prone to bigotry and more prone to reflection. I sincerely hope they get it.
Left Brain Right Brain 
Wade has a serious and valid point.
I don’t support a “cure” for autism, and I don’t think a biomed cure would even make sense.
But I do support compensating for the weaknesses that autism gives – while simultaneously emphasizing the attendant strengths.
I had to learn to make eye contact – that’s compensating for the fact I lost a bit of primate nature that neurotypicals still have.
My sister can’t talk – so she uses picture squares to get ideas across. That’s compensating for a weakness.
And that is the middle ground that I think both sides can agree on, if they’re willing to seek compromise.
Kev,
When you say “borderline bigot”, are you referring to the psychological disorder (Borderline Personality Disorder) or to “being on the border”? If the latter, which side of the border do you think Lenny is on? I know what side I think he’s on.
To me, Lenny stepped over the border when he decided to become the arbiter of who was autistic and who was not. He conveniently changes that judgement, too. When he’s counting up the “autism epidemic” (or, even worse, the “autism tsunami” – really tacky, that), he counts everyone who has the label. When he’s deciding who gets to speak for the autistic community, he shuts the door on any who can talk – unless, of course, they agree with him.
As an aside, I really hope that the EoH group doesn’t fold – I like the way it keeps the lunacy de jour of the autism-mercury fringe out where I can see it. Always useful to know which way the the loons are heading – lets me “head them off at the pass”.
Prometheus
How dare autistics presume to think or say that they don’t want to be just like everyone else! That’s very uppity of them. Who do they think they are, the equals of normal people?!
Sheesh.
Hi Kev,
I hope you’re right about EoH crumbling, and that it falls squarely on ol’ Lenny’s shoulders. You’re right, Wade Rankin is a good man, but he has to first step out of the rubble of New Orleans. Just checked his blog again, nothing new, so I guess he’s too busy for it.
I want to know what David Kirby thinks about his little fan club. If EoHam 🙂 crumbles, the chief loonies will just go back to posting on autism-mercury and chelating4kids2. The cool thing aobut autism-mercury is that it’s open for anyone to see.
I wonder how many will show up for their rally in October.
“national force”? They don’t even have enough power as parents of autistic kids to get the Autism Society of America to back chelation or even say much about it. They are a minority obviously.
I apologize in advance for the length of this comment.
Despite being flattered by your kind words, my first reaction upon reading this post was “Oh #*&% !!!†In the words of William Tecumseh Sherman, a yankee who knew his limitations: “If nominated, I will not run. If elected, I will not serve.â€
There is no need to replace the EOH list. It serves many functions in the biomedical community, including the discussion of what protocols work with particular problems. It’s one way of forming a collective wisdom. And sometimes it may veer quite far from wisdom. I must admit that I do not regularly read many postings on EOH because I simply do not have the time. That job belongs to my wife (who really doesn’t have the time for it either, but she manages somehow).
The members of the EOH list and the “members†of the biomedical community — like the “members†of the neurodiversity community — are not a monolithic entity. Subscribers to the list will come and go, and some will get pissed off at others. I do not doubt that other groups will spring up; indeed, other groups already exist. The groups that already are, and the groups that are to be, will likewise help to form a collective wisdom, and occasionally they will veer far from wisdom.
It is neither my place nor purpose to defend Lenny Schafer, but I frankly don’t find anything bigoted in the language you quoted. His language may be more pointed than I would use, but then again I have not been vilified in as many quarters as Lenny has. I have been involved in the internet autism debates for too short a period to know the complete story, but I have seen a harshness in tone not just by Lenny but also by people on the other side of the debate who criticize him. I haven’t traced the history of the feud back far enough to know who “started it,†and I really don’t particularly care. The fact is I find very little of what Lenny says to be nearly as offensive as the “borderline†crack Prometheus makes in his comment above.
I can’t claim to know Lenny very well. Indeed, I can probably say that I know you better, Kev, than I know Lenny. The closest Lenny and I have had to a conversation was a very limited exchange of emails in the last couple of weeks. But I do occasionally read the Schafer Autism Report he distributes, and have found it to be a useful resource. I have never seen anything to make me believe that Lenny Schafer is a bigot by any definition of the word. And I have certainly never seen anything that leads me to believe that his motivations are anything other than completely honorable (or honourable as you spell it on your side of the pond).
Your criticism of the particular excerpt from one of Lenny’s posts underlines the point I recently made that the difference in our views owes as much to semantics as it does to substance. When Lenny discusses a “cure†or relieving children from “clinical autism,†he is not saying anything markedly different than my reference to alleviating dysfunctional aspects of ASD. Virtually all of us were informed of our children’s ASD by doctors who described the condition in a manner consistent with the disease model with which they were comfortable. Medical science defines autism in terms of dysfunction. Therefore, to speak of “clinical autism†is not incorrect if one accepts the traditional way of defining ASD.
The clinical definition of autism may be too narrow. But defining autism as a genetic fact of life, as many in the neurodiversity community seem to believe, is too limiting in the opposite direction. I am not really competent to say that ASD can never be solely genetic, but the relatively recent rise in autism rates — a trend that even the United States CDC seems to begrudgingly admit — cannot be blamed on genetics. As I have said, biomedical intervention will do nothing to change my son’s genetic makeup, including the predisposition he has to ASD. But I do expect that the intervention will alleviate the dysfunction that medical science uses to define his autism. Autism is a complex issue, and to say that biomedical intervention is never appropriate is as foolish as saying that biomedical intervention should be mandatory. But that’s just me.
I also think it’s a little unfair to blame Lenny Schafer, as moderator of the EOH list, for the outing of Orac. I am not sure it’s his function to censor contributions by the various members. That being said, I share your concerns over the manner in which Orac’s personal information was posted. Although it’s fair to say that Orac and I will never be the presidents of each other’s fan club, I never like to see a situation arise in which the possibility of harassment is invited. I hope you feel the same about Jerry Newport’s actions.
Of course, Orac’s identity was not exactly a state secret. Ilena Rose had been posting his name in various places for quite some time, and from there it’s pretty easy to get the rest of the information. I was aware of Orac’s identity long before I started my blog, at a time when he and I often engaged in dialogs on the Huffington Post. I never saw any reason to use his name publicly then and I don’t now.
Again, I apologize for the length of this comment, but I was not very comfortable being presented as the anti-Scafer. Although our styles may differ and we do not agree on everything, I did not want there to be an impression that I have anything but respect for Lenny, just as I have nothing but respect for you, Kev.
P.S.: Clay, thanks for the compliment, which is greatly appreciated. The quotes Kev gives are from a post I put up last night, so I’m back at it.
Fair enough Wade – I’m not trying to cast you in a role exactly more compare your style of asking first to Schafers style of attacking first. Its certainly not up to me to suggest who (if anyone) should replace Schafer as the titular head of any Biomed group except in so far as I feel that there are directions that you can provide that would benefit both camps as oppose to someone who has made it clear that he neither understands autism as it is defined in the DSM and elsewhere and has no real inclination to accept any reality based definition of autistics and has scant respect for either definition.
You make part of my point, Kev. The DSM defines autism as a series of dysfunctions. It seems tom that there are two different reality-based definitions that add to the DSM criteria: one that deemphasizes the dysfunctions, and another that observes additional dysfunctions that seem too prevalent to be mere comorbidities. But it’s not the definitional difference that divides us; it’s the debate over cause and options.
I believe that the majority of the present epidemic (another bone of contention between the two camps) results from environmental insults, including the adverse effects of thimerosal-containing (and to a lesser extent, live-virus) vaccines. Science still has a long way to go before that hypothesis is either fully proven or refuted. In the meantime, we practice biomedical interventions because, at least anecdotally, the dysfunction improves.
That being said, I believe in human dignity and the right to self-determination. But I must admit that it is sometime difficult to balance that political/social/moral belief against the belief that more people could “alleviate†themselves or their children from dysfunction. Perhaps Lenny could show more moderation in his language, but that problem extends to both sides of the debate. One person left a long comment on my blog, that included the following statement:
“I understand the concept of being respectful, I just can’t maintain it in the face of absolute falsehoods stated by people who don’t know what they are talking about. It’s so aggravating.â€
Those of us in the biomedical community hold an idea with a rational basis, drawn from scientific observation that may be disputed but certainly exists. To say we “don’t know what we are talking about,†no matter how politely it is stated, can be inflammatory. Calling someone a bigot, no matter how politely it is stated, can be inflammatory.
Mr Schafer has referred to autistic people as “festering”, (or, in the alternative, “imposters”) and to those who disagree with his views as “autism holocaust deniers”. There are too many examples to list and I don’t want to spend a lot of time thinking about Mr Schafer.
Mr Schafer has, in the recent past, published and distributed a report with the purpose of vilifying and defaming me, and in which I am called a malingerer and fraud with a personality disorder. Etc. Mr Schafer refused to publish my polite response, which you can read here http://autistics.org/library/dawson-response.html . He also sent me some brutally abusive mail (he is very creative). Though in fairness I’ve gotten worse mail than that, just not so articulately denigrating.
The Schafer Autism Report described above was also responded to here http://www.autistics.us/library/time.html . And none of this had to do with mercury, but with Mr Schafer’s view of autism and autistic people.
I disagree a lot with Mr Rankin’s presentation of the nature and diagnosis and prevalence of autism, but I don’t know where to start. There is such a thing as accurate diagnosis, and we do know quite a bit about how autistic brains work. I see no sign that those attempting to treat whatever they decide is “dysfunctional” in autism are interested in what autism is, in how autistic brains work, in how autistics perceive and learn in ways which non-autistics are not so good at. This is true both in the “biomed” camp and in the ABA camp (these camps overlap a lot), both of which procede as if cognition doesn’t exist.
To see the kind of role knowledge of cognition (versus knowledge of mercury poisoning, or ABA) can play in helping autistics, see this informal article by a world-class cognitive scientist who has an autistic son http://www.ls.wisc.edu/L&STODAYv9no2/L&STODAYv9n2p4.pdf
And even if you have no interest in cognition, this article shows that parental reactions to getting a known-to-be very difficult diagnosis for their child vary widely, a phenomenon that should maybe be studied.
But it’s not the definitional difference that divides us; it’s the debate over cause and options.
True, thats not the difference that divides _us_ but its one of the (many) differences that divide myself and others from Schafer. He seeks to create a type of autism I’ll call autism-bullshit as oppose to a category of autism that is based on observation of developmental issues I’ll call autism-official. However, whatever way you cut it there’s only one way to get a diagnosis of autism – and thats from autism-official.
I can’t speak for what others have left in your blog comments and I can’t tell you you’re wrong for doing what you honestly believe is right.
On the point of ‘alleviation’. I can understand how someone who believes their child is mercury poisoned would want to chelate their kids in order to help with the physical illness. But that isn’t autism. I can’t think of a way that chelation can help with autism. Seriously. I’m not being facetious, I really can’t.
I’d also agree that calling people like Schafer bigots is inflammatory. I don’t have a problem with inflammatory when its accurate. As Michelle points out, he’s frequently abusive regarding adult autistics and I strongly suspect he’s the sender of some colourful emails I’ve had (certain spelling errors lead me to believe that) and he equates those of us who don’t believe in the autism epidemic with neo-nazi facist thugs, irrispective of the fact that, as in all other areas of the whole debate, the validated peer reviewed science is on our side.
I missed out in my last comment about you asking me about the things Jerry Newport said. They’re reprehensible. I don’t know Jerry Newport other than via AutAdvo and AspiesForFreedom but I was shocked when I was told what he’d written. I sincerely hope he regrets and withdraws those comments.
I, too, have seen the “crumbling” of the EOHarm list in recent days. (c’mon, banning Wendy Fournier for suggesting the list has strayed from its stated purpose?) And like Prometheus, I hope it stays in some form, as it does provide valuable insight into the thought process of those who oppose thimerosal – and I would argue, oppose vaccination as well.
I’ve tended to say neutral on the whole “cure” debate with regards to autism, because frankly, I’m not sure I’m qualified to say whether autism is something that should or could be cured or not. My concern is with the foregone conclusion of many on the biomedical side that are convinced – despite a lack of science to that point – that their child’s autism was caused by mercury poisoning, that the mercury in vaccines was the major culprit, and that the drug companies should pay for their child’s suffering.
The reality is that we don’t know, with any degree of certainty, what causes autism. We don’t know if it can be cured. Wade may be right that we can mitigate some of the medical conditions that may be directly (or indirectly) associated with autism through biomedical treatments, but there’s no body of peer-reviewed science that proves that to be the case. There seems to be a tacit acceptance of a lack of peer-reviewed science on one side. Yet the volumes of scientific evidence illustrating the safety and effiacy of vaccines is dismissed as being “bought off”, “conflicted”, or “fatally flawed”.
That is the part that’s frustrating for me, because I think all that does is convince people (especially those who might be fence-sitters) that you scientific proof doesn’t matter. That the “establishment” can spend millions of dollars on studies, that they can go through all of these rigorous processes that take years, but the reality is that all of that work is no better than a handful of people making scientific claims of questionable validity and then not providing any hard proof to back it up.
And once science doesn’t matter, then all bets are off. Medicine and medical interventions become not a matter of what makes the best scientific sense, but rather a matter of who can convince people that their product works better. That’s fine – at some level – for potato chips and soda and maybe even a car. It’s unacceptable when it comes to issues related to health.
Is that a bit of a slippery slope fallacy? Perhaps. But I’d much rather see both sides (much more the biomedical side) resort less to public relations efforts and legal activities and more to actually proving their case where it really should matter. In the court of science. Skip the rallies, and start doing the trials and studies that will make these treatments and theories a reality.