Lenny Schafer's Inquisition: A Response

The following is a response to Lenny Schafer's three-part editorial, "Somewhere Over the Spectrum," published in January 2005 in the Schafer Autism Report. The text of the editorial can be found at Part I, Part II, and Part III. Amy Harmon's article, 'Don't Cure Us,' Some Autistics Are Pleading," was published by the New York Times on 12/20/04, and was syndicated by a number of other newspapers.
Mr. Schafer's 17 January 2005 reply follows this letter, as does my 18 January 2005 response and his 19 January 2005 reply.
(relevant to the concept of "autisticism")



15 January 2005

Dear Mr. Shafer,

Your editorials in response to Amy Harmon's recent New York Times article on autistic advocacy consist primarily of attacks on your own generalizations and simplifications, rather than a reasonable consideration of any specific position that any individual has promoted.

The statement, "If one can typically speak, write, sign, etc., even if they have a number of other shared characteristics with autism, they are not autistic," is patently incorrect. While autistic disorder, one of the three pervasive developmental disorders referred to as "autism," is defined diagnostically by an early delay in the onset of language acquisition, that is not the same thing as arrested language development. Indeed, the recent epidemiological studies demonstrate that the vast majority of individuals diagnosed with autistic disorder (NOT including PDD-NOS or Asperger's Disorder) develop fluent spoken language. The California DDS data demonstrate that the vast majority of individuals who currently qualify for services as CDER Status 1 Autism have NO degree of cognitive impairment (i.e., "mental retardation"). Thus, autistic individuals who can speak and who have unimpaired cognition are the norm, not the exception.

The statement, "The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic," is not only egregiously in error of the facts, it demonstrates that your motivation for attempting to disqualify communicative autistics from participating in meaningful dialogue about autism and public policy is that you disagree with the opinions of a few, rather than any concern for the "purity" of diagnostic categories. Would you seek the same kind of "excommunication" if an autistic individual had enough language skills to ask you for a glass of orange juice?

Although you claim to support the interests of those diagnosed with Asperger Syndrome and their families, you seem to regard any mention of autistic individuals with any functional ability, and any mention of AS in the same breath as autism, as constituting a "trivialization" of autism. Witness the commentary following the story about Corey San Chirico in the 11/16/04 SAR; even though the article spoke frankly of both the gifts and difficulties experienced by this young man, and even though it was pointed out in the article that autism affects some more severely than others, you found fault with the author of the article because the portrait was not accompanied by explicit discussion of diagnostic terminology, criteria, and "functioning level," and ended with, "Autism is not 'very annoying', it's damnable." Another example is your comment that followed Jerry Newport's letter published in the 11/10/04 SAR: "So Peek could tell the day of week on the day he was born, and remembers it, big deal. But can either of you tell me the times of day the closest railroad trains pass the restaurant in Tucson, 2001 and who had the baloney sandwich? Harrumph." Perhaps this was meant to be funny, but it struck me as grumpy and resentful.

You have referred to "those who would define Aspergers or autism as little more than an odd-ball minority lifestyle made up of 'geeks' and savants with ticks doing tricks," and "the very real, if not romantic 'culture of autism' in which anyone who taps a pencil can opt themselves in as a member." Who exactly has offered such a definition? No one that I am aware of has offered such definitions or lighthearted self-diagnoses. What is the point in creating opponents where there are none?

One letter writer echoes your words in her complaint about "the scourge of autism dialogue these days — the autism 'imposters' who trivialize the catastrophic nature of what is 'real' autism," and contends that "the language of autism is severely impoverished" because of the lack of a hierarchy of diagnostic categories based on level of impairment. I associate impoverishment with loss and degradation, and would contend that the real threat of impoverishment lies in the attempt to exclude the increasing number of adults who have discovered their autism in adulthood, and adults diagnosed as children but now "too functional" to meet the diagnostic criteria for "Schafer Autism," from sharing their experience and knowledge and opinions with those who could benefit from them most, and from generally promoting their views in the public square. I consider the "scourge of autism dialogue" to include the use of catastrophic, melodramatic verbiage to describe autism; the creation of false dichotomies, whereby advocacy of acceptance of the permanence of autism, and acknowledgement of the benefits it can confer, is equated with denial of its challenges and advocacy of neglect; and the tendency of all too many people to resort to personal attacks (including use of such terms as "imposters" to denigrate people one does not know) rather than engage in civilized dialogue about difficult issues.

Such pleas for increased diagnostic stratification also suggest an underlying desire to prevail in a public contest of "Who's more disabled?" "Who deserves more attention?" "Who suffers most?" "Who is both able and willing to tell the most impressive horror story about their autistic child?" Every family has its challenges and every family is unique. Every family has a different attitude towards disability. It is only destructive and divisive to make assumptions about anyone's experience based on a diagnostic label, or on the extent of a parent's willingness to portray their parenting experience in the most devastating terms. As Dena Gassner said in her letter published in the 11/11/04 SAR, "There is no such thing as a 'mild' version of autism... We must quit building walls where there are none." You seem to be intent on building a wall based on your own stereotypes of what constitutes impairment. It is a stereotype that may be based upon your personal experience, and it may be shared by others, but is a stereotype nonetheless.

You have recommended, "if someone claims to have autism for purposes of making some political statement, ask them to prove it." Would you consider asking someone who claims to be a parent of an autistic person for similar documentation? Undoubtedly, few would take kindly to a challenge for a DNA sample, complete sexual history, adoption documents, divorce and custody papers, or arrest record, so that the legitimacy of their claim to parenthood could be determined, and so as to rule out the possibility that they might actually be imposters, or adulterers, or kidnappers, or child abusers. It would be a grossly offensive demand — no less offensive than your demand for access to the private records of autistic individuals.

You ask, "Can we afford to allow the interests of our autistic children and everyone else 'on the spectrum' to be pushed out of the public eye and displaced by a handful of imposters crying a contrived victimhood?" and a letter-writer contends that "our story needs to be told also." The supposed threat to the visibility of the concerns of those whose family members are greatly challenged, or who are convinced that autism must be eradicated altogether, is imaginary. Over the past decade, thousands of articles on autism have been published in newspapers and journals all over the world. They have focused on such subjects as autism research, the increase in number of people with autistic spectrum diagnoses, education, experimental therapies, the vaccine causation hypothesis, the impact of autism on families, community living options, and profiles of individuals with autism spectrum diagnoses. In a great many articles, the perspective of autistic individuals themselves goes completely unreported. Such was the case with the recent New York Times piece, "For Siblings of the Autistic, a Burdened Youth". Exclusion of the autistic perspective is far more the rule than the exception in autism reporting. There is no need for panic at the possibility that the voices of autistic adults or adolescents who have managed to develop communicative skills and maintain their self-esteem, or of parents who do not regard their children's autism as a catastrophe, will drown out any others — and that includes parents of severely disabled children, researchers, educators, medical professionals, alternative health care practitioners, personal injury and special education lawyers, conspiracy theorists, and others who participate in public discourse about autism.

You contend that, "It is because of the misrepresentations of this small disgruntled group and their intervention in the Canadian courts, in part, that an untold number of children with undeniable autism will no longer receive the benefits of behavioral therapy to help them achieve basic independent living skills, at the least." There were thirteen interveners in the Auton case; Michelle Dawson was the only autistic intervener. Ms. Dawson acted independently, opposing the government and the government interveners as well as the parents. Ms. Dawson stated clearly in her application that it is a violation of the Charter rights of autistic Canadians to fail to provide what they require, but in the Auton case, because only one perspective was represented - that autism is disastrous, autistics are horrible, and all autistics are doomed without Lovaas-style ABA - there was no evidentiary foundation for the Court to direct the government to do anything. The Attorneys General of every Canadian province argued against the plaintiffs' demand that one specific educational regimen be legally defined as "medically necessary" for autistic individuals; they argued against the plaintiffs' attempt to persuade the Court to override provincial budgetary decisions; and they argued against the plaintiffs' contention that the government of British Columbia had discriminated against their children. It is nonsense to suggest that the Canadian Supreme Court relied entirely on Ms. Dawson's testimony to make its decision.

It is also incorrect to suggest that loving parents of autistic children would unanimously support the legal position of the plaintiffs in the Auton case. ABA is only one of a number of educational options for autistic children, and with the exception of one nearly 20-year old empirically flawed study by Lovaas himself, there is scant scientific evidence to support ABA therapy for autism over any other intervention. Furthermore, any educational decision is as much a consequence of a parent's value system as it is a response to the needs of the individual child. Should the Canadian Supreme Court have determined this one specific regimen to be "medically necessary," Canadian parents could be held legally at fault for making alternative choices for their autistic children's education, either by the government, or by hostile family members or divorcing spouses. Furthermore, a decision in favor of the plaintiffs would very likely lead to provincial bankruptcy. There is also no guarantee that all parents would be emotionally sympathetic to the plaintiffs, whose publicity tactics have been deplorable. For example, Sabrina Freeman's statement to a reporter for the Victoria Times Colonist that "the decision will directly result in B.C. children going into foster care probably in the next six months because the parents are not going to be able to live with a child not in a treatment program" was a blatant attempt at emotional manipulation. I am hardly impressed by disappointed litigants unwilling to consider the viability of more than a single, exorbitantly expensive approach to educating their children, who publicly threaten to turn over those children to the foster care system when their demands are not met.

You have stated that, "The 'Don't-Cure-Our-Autism' advocates argue that if a child is having 'hellacious' behavior, it is only because parents and the rest of the world have failed correctly to respond to the child's autism." Now who said this, and where? Although the author of the letter who used the term "hellacious" did express sympathy for the perspective of autistic individuals who take issue with the idea of "curing autism," at no time did she suggest that all challenging behavior is due to incorrect parental responses. This is entirely your fiction, an expression of contempt for her sympathy with autistic self-advocates, rather than a reasonable analysis of either her letter, or of anyone's specific statement. It is a transparent attempt to create a mythical monster.

You have stated that "the anti-cure advocates have no guidelines for what is appropriate parenting and what is not. Also, they are unable to produce actual examples of parents who are both doing it right and who are doing it wrong." To the contrary, Frank Klein has written a number of remarkable essays on these subjects (at http://home.att.net/~ascaris1/), including one entitled, "Thanks, Mom: What My Mother Did Right". Jane Meyerding, who was quoted in Amy Harmon's recent New York Times article, has edited over fifty of her posts to newsgroups — many of them offering advice and accounts of her life experience to parents — and makes them freely available online at http://mjane.zolaweb.com/snippets.html. Patricia Clark, Recording Secretary of the ASA's Greater Georgia Chapter, is an active poster to autism lists, and frequently offers constructive advice to parents, including sharing her own experiences with loss of skills and communication, with parenting children on and off the spectrum, and with the benefits of a gluten- and casein-free diet. Her website is at http://www.autistics.cc/. Phil Schwarz, Vice-President of the Asperger's Association of New England (http://www.aane.org), has participated in many public discussions about educating children on the autistic spectrum, speaking from his own childhood experiences, and from his experience as the parent of an autistic son who has benefited from specific behavioral techniques; see his essay on this last subject, "Another Parent's Take on ABA and its 'Defense'" (http://www.autistics.org/library/anotherparent.html). These are just a few examples.

Generalizations about "the anti-cure advocates" don't hold up when you actually take the time to consider what people really have to say. Such generalizations are not only inaccurate; they could have the long-term effect of perpetuating a climate of contempt towards anyone who might be able to express the least bit of self-acceptance towards his or her autism.

You contend that, "Parents who are struggling to get their Asperger's child support services find it less than helpful when others, like the Don't-Cure-Us bunch spread the word that autism ain't so bad anyway and demand 'don't treat us or cure us!'" This has not been my experience. My conviction that society must learn to accept the reality and permanence of cognitive diversity has not interfered in any way with obtaining needed services and accommodations from the local school district, or obtaining health care services. Furthermore, I know of no one who has ever promoted the position that autistic children should be deprived of an education, or deprived of relief from suffering.

Your statement, "There is no reason why a win-win solution can not emerge from this for everyone in the autism community; that truly no one be left behind," is both laughable and disingenuous considering that it follows on the heels of such a hostile misrepresentation of the positions of many different individuals, and such an aggressive attempt to disqualify so many people from public discourse about autism — to put them in a no-win situation. Indeed, by promoting the silencing of those with whom you disagree, you promote the disenfranchisement of many parents of autistic children — parents who are themselves on the autistic spectrum. Many parents have recognized their autistic traits, often in the course of seeking a diagnosis for their child; some have sought their own diagnosis. The genetic component of autism is a living experience for many families. Genetic research has been fruitful in that it has documented this reality, and it has documented the fact that the genetic underpinnings of autism are extraordinarily complex, and not necessarily easily subject to genetic "curation."

You have written, "I believe, as do others, that it is their autistic-like deficits, the lack of the ability to empathize, that prevents them from seeing what's truly in the hearts of most cure and treatment-loving parents," and "Given their apparent lack of diagnosis documentation, the misanthropic attitude and behavior of those in this group appears to be more like Borderline Personality Disorder, which is a differential diagnosis to Aspergers." Too conveniently, your mythical monster is not autistic enough to qualify for a diagnosis of "Schafer autism," but autistic enough to be held at fault for his or her presumed autistic characteristics. Regrettably, Kit Weintraub, Dr. James Mulick, and others have also stooped to making generalizations about, armchair diagnoses of, and personal attacks on individuals with whom they disagree; in fact, Ms. Weintraub's and Dr. Mulick's previous assaults on Michelle Dawson were featured in a special edition of your newsletter. Such responses translate to little more than, "I'm right, you're wrong, and you're a liar and sick, too." In Dr. Mulick's case, it could even be argued that such statements constitute a breach of professional ethics.

It is bad enough that autistic children have to endure bullying and name-calling; it is bad enough that they are so often short-changed by other people's assumptions about who they are and what they're capable of, based solely on a diagnostic label. It is even worse that the same treatment should be standard modus operandi for people who claim to support the interests of autistic citizens. All autistic children who survive to adulthood will continue to be at risk should this kind of abusive behavior come to be regarded as acceptable. When an autistic individual holds an opinion with which one disagrees, and remains unpersuaded to change that opinion, why should this be automatically attributable to lack of empathy on the part of the autistic person, rather than the possibility that the other party might not have successfully argued their point, or that the other party might be wrong? I have witnessed many very empathetic interactions in online discussion groups such as AutAdvo between autistic members and parents who seek advice. Those interactions are most successful when parents are willing to communicate with the other participants as peers, rather than succumb to the temptation to adopt a parental posture, to solicit personal information about others at the same time that they withhold information about themselves, or to assume that their judgement is inherently superior simply because they do not carry a diagnostic label.

We all have our deficits, and I have known plenty of neurologically typical people who have a long way to go in the empathy department. Many chronically hostile, combative, verbally abusive individuals will never receive the official diagnosis for which they might easily qualify because they are convinced that there is nothing wrong with them, they either do not perceive or do not care about the harm that they inflict upon other people, and they do not seek help. Whether or not you have a diagnostic label of your own, you epitomize the lack of empathy that you criticize. To concoct a phrase like "pin the label on the dorky" to discuss autism diagnostic categories is extraordinarily insensitive, as insensitive as your propagation of such expressions as "mad child disease" and "tsunami" to describe autism.

I hope that all parents who have even the slightest optimism that our autistic-spectrum offspring might some day be able to communicate and take part in decision-making pertaining to their own lives, will be as alarmed as I am at the thought that "Schafer's Inquisition" might someday descend upon them should an opinion fall from their son's or daughter's lips that some parent finds unpalatable, or an experience be shared that some parent finds unbelievable. As Phil Schwarz, Vice-President of the Asperger's Association of New England, has written:

"As someone who is both a parent of an autistic child and an AS adult himself, and speaking to fellow parents of autistic children: I don't think it's very good strategy to disparage and dismiss "Aspies" and autistic self-advocacy as irrelevant to your concerns. The truth is — whether Kit Weintraub and Lenny Schafer like it or not — that if your kids' outcomes are good, they are going to grow up to be like *us*, and you will sooner or later find yourselves on *our* side of the social and economic issues we are trying to gain traction for, because your kids are going to have those exact same issues. The autistic kids of today are, if all goes well for them, the self-advocates of the next decade."

I dearly hope that the contemptuous attitude that you have espoused does not continue to proliferate. Your "war on autism" has every appearance of a war on any autistic person who does not conform to your stereotypes, or with whom you happen to disagree.

Sincerely,

Kathleen Seidel
Mother of two, one diagnosed AS
Aunt of many, two diagnosed AS




Mr. Schafer's Reply

17 January 2005

Hello,

Thank you for your thoughtful letter. Unfortunately it is too long to publish, amongst other limitations.

Autism is a disability, no less. I plan to continue pressing the point for the sake of my son and others like him so that they may be humanely treated and hopefully cured of that which disables them regardless of the label that is affixed to it, nothing more. I would surrender a limb to make it so, if such an exchange were possible. Would one risk surrendering theirs to stand in the way? I think not.

Lenny




My response:

18 January 2005

Dear Mr. Schafer,

Thank you for your reply. It is unfortunate that you have offered no substantive response to any of the issues which I raised in my letter, and are unwilling to publish it in part, as you did Ms. Weintraub's lengthy letter to Amy Harmon, Dr. Laidler's reply, and others. Alternately, you could link to http://www.neurodiversity.com/inquisition.html, which contains the full text.

You might explain:

who benefits from your promulgation of inaccurate definitions of autism;
who benefits from your suggestion that autistic citizens who have succeeded in developing communication skills should not be entitled to respectful consideration of their experiences and opinions about autism in general, as well as to advocate for their own needs;
who benefits from your creation and propagation of sensationalistic and demeaning language to describe autism and autistic people;
who benefits from your personal attacks, overt disdain laced with overt suspicions of malingering, unwarranted accusations of dishonesty, and demands for personal information;
and who benefits from from your disregard of the perspective of those who do not adhere to your views, and from your inaccurate, bigoted generalizations about people you do not know, including many thousands of children on the autistic spectrum, and their parents both on and off the spectrum.

I fail to see how "humane treatment" can be promoted by such inhumane means. How can you with a straight face think that you are bringing "anything autism" to your readers when you are so decidedly biased against, disparaging of, and openly hostile to people whose interests you claim to champion?

Sincerely,

Kathleen Seidel



Mr. Schafer's Reply

19 January 2005

The grass is green,
The sky is blue,
And autism is a disability.
Don't blame me; I found them that way.

If one is not disabled, one is not autistic, and one should butt out.

Lenny




and now, from one of our readers...




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