Reflections on the "Hidden Horde" · 2006-03-06 11:00

A mother’s consideration of autism history, politics, prevalence & denial

Birth of a Bad Meme

The term “hidden horde hypothesis” first appeared in a September 2001 letter by Mark Blaxill to the British Medical Journal, in response to a previous letter by Helen Heussler and five colleagues at the University of Nottingham. The Nottingham group had assessed data from a 1970 British cohort study of children’s health and behavioral characteristics, then applied contemporary diagnostic criteria for autism to the subjects of that study. Their analysis led them to posit that the prevalence of autism in the early 1970s might have been significantly underestimated, and that many adults not previously diagnosed with autistic spectrum disorders (ASD) might have qualified for such a diagnosis in childhood if less restrictive criteria had then been in effect.

A businessman, father of an autistic child, and co-founder of the political action group SafeMinds, Mr. Blaxill has devoted considerable energy to promoting the argument that autism is a consequence of vaccine damage; that medical professionals, pharmaceutical companies, the government and complicit apologists have conspired to hide that fact; and that law courts should award compensation for iatrogenic injury to parents of autistic children.

In his letter to the British Medical Journal, Blaxill derided the editors for publishing Heussler’s letter; questioned the integrity of the members of the Nottingham group; suggested that the manner by which they came to their conclusions constituted an “abuse” of research methods; and mockingly characterized their conclusions:

The only thing more perplexing than the contents of this letter was that the BMJ chose to print it… you owe your readers better information than anecdotal musings from a group of interested parties… This potential abuse of such methods would normally not be of great concern, but is critically important today because of a controversial and unsupported current hypothesis… that despite an apparent recent increases in the rate of autism prevalence in many countries, the actual incidence of this devastating disorder has remained constant… Despite the prominence of its proponents, there is no hard evidence to support this hypothesis… In fact, the only studies of any depth that have explored the question have overwhelmingly failed to find the hypothesized “hidden horde” of autistic children from the 1970s, or for that matter, from any other period… [there is] little support for the hidden horde hypothesis. [emphasis added]

Although Blaxill put “hidden horde” in quotes, the phrase appears neither in the letter to which he responded nor in Is there an epidemic of autism?, an article cited as an example of the hypothesis he sought to rebut. Rather, the phrase is a linguistic barb of his own invention, employing menacing imagery of warriors determined to destroy everything in their path.

As evidence supporting his assertion that ASD has never occurred in the adult population in rates comparable to those documented in the contemporary child population, Blaxill offered L. Burd et al’s 1987 study of autism diagnosis in North Dakota, and a 12-year follow-up assessing the methodology used in the original study. The follow-up indicated that only a single autistic child within the age cohort under analysis had not been diagnosed previously, demonstrating consistency in diagnostic practice in that state over a 12-year period. He also cited Lena Nylander and Christopher Gillberg’s survey of psychiatric outpatients as proof of relatively low rates of previously undiagnosed autism.

He then declared that,

For some reason, many scientists and health professionals find the data regarding sharp increases in autism rates to be an uncomfortable finding. A few have developed extravagant and unsupported theories as an expression of their discomfort. These theories deserve sharp critical examination because the simple interpretation of the existing data supports the conclusion that autism has increased quite strongly.

The letter drew to a close with an imperious dismissal of the Nottingham team’s conclusions:

Yet we are now offered “focus groups” as a new research tool. In the business world, we call this technique “mother-in-law” research, so I must confess surprise that the BMJ would dignify such efforts. Good science demands that we face the real data, no matter how inconvenient the implications may be.

Mr. Blaxill’s letter largely consists of disdainful personal attacks on six individuals who expressed their opinions civilly on a subject within the scope of their scientific and professional expertise. Its author implied possession of privileged insight into the motivations of people with whom he was unacquainted; characterized as disingenuous and self-serving those whose interpretation of scientific evidence differed from his own, admittedly simple one; and categorically denied the possibility that a specific category of humanity exists. Such denial supports the arguments of parties involved in private litigation, the existence of which was not acknowledged by the author, nor his close association with various plaintiffs.

Beneath the letter’s combative veneer lay a weak rebuttal to the Nottingham researchers’ analysis. In citing the Burd studies to support his contention that few adults’ early development and behavior were consistent with modern criteria for autism, Blaxill appears to have assumed that diagnostic consistency documented in that study would necessarily extend to regions besides the rural and frontier settings that were the specific subject of the study; that such consistency could be extrapolated backwards in time, into decades in which diagnostic criteria for autism were significantly different or nonexistent; and that the introduction of less restrictive criteria in the DSM-IV would have a negligible effect on diagnostic rates. The reference to Nylander and Gillberg’s study included no consideration of the fact that it was not a study of autism prevalence in a total population, but was limited to psychiatric outpatients, and was intended to assess the accuracy of a specific screening questionnaire. Neither was there any consideration of the fact that a sample of psychiatric outpatients cannot be guaranteed to represent the region’s total population of adults who might qualify for an ASD diagnosis, since adults are under no obligation to present themselves at psychiatric clinics. Indeed, Nylander and Gillberg found that seventeen of the nineteen ASD patients had been previously diagnosed with other psychiatric conditions, including schizophrenia, and concluded that ASD has been under-recognized in psychiatric patients — a finding which would tend to support the argument that ASD is likely to be under-recognized in the general population, as well.

The Public Relations Machine

Immediately upon its publication, Blaxill’s letter was announced in Lenny Schafer’s FEAT Daily Newsletter, bearing the tabloidesque headline, Autism Epidemic Naysayers Wholecloth Alternate Hidden Horde Hypothesis. It was then posted to the widely-read Yahoo! newsgroup Autism-Mercury by Sally Bernard, founder of the public relations firm ARC Research, mother of three children, and co-founder and a primary funding source of SafeMinds. Since the 2005 expansion of aggressive public relations and political lobbying efforts by SafeMinds and other organizations promoting vaccine-injury claimants’ agenda, the phrase “hidden horde hypothesis” and variants on the question, “where is the hidden horde of autistic adults?” have been invoked by a number of media campaigners, consultants, and parents persuaded to believe that their children were made autistic by vaccine poisoning.

Mark Blaxill referred to “the hidden horde hypothesis” at his presentation at the May 2005 conference of Autism One, an organization showcasing various health-care providers and manufacturers marketing biomedical and complementary treatments to parents of autistic children, proceeding from the assumption that autism is a consequence of toxicity. The phrase has since been echoed repeatedly by public relations professional David Kirby in promotional appearances for Evidence of Harm, a dramatic narrative reflecting the SafeMinds perspective of autism-as-tort. In a Spring 2005 interview with Autism One Radio published in Medical Veritas — a journal whose editors explicitly allege that government agencies and medical professionals have conspired to suppress reports of adverse vaccine reactions — Kirby stated:

And people who insist or say that there is no epidemic — that it is just better reporting and better diagnostics — I really would like to pose the question to them that Mark Blaxill, from Safe Minds, asks: Where are all those people? Where are the 1 in 166 autistic adults? We can’t find them. So, they have either been institutionalized, or they passed away, or they somehow had a miraculous recovery because they don’t seem to be around. And Mark calls that the “hidden horde” and I think it’s a really good point.

Kirby’s unequivocal assertion that “we can’t find them,” and his suggestion that any person with an ASD diagnosis who survives to adulthood would necessarily be institutionalized, with any other outcome indicating that that person was no longer autistic, indicates his dependence upon his mentors, his unfamiliarity with the disability rights and independent living movements, and his unfamiliarity with the clinical literature of autism. This literature provides numerous case reports of autistics who have achieved a level of social competence sufficient to enable them to function in the world without being immediately identifiable as autistic.

UPI reporter Dan Olmsted commenced publication of his Age of Autism series in early 2005, coincident with the initiation of advance publicity for Evidence of Harm. Although Olmsted was a personal friend of Mark Blaxill for at least a year prior to publication of his first article about autism, he did not disclose this fact to the general public until February 2006, after issuing almost forty articles almost exclusively promoting the perspective of vaccine-injury litigants.

In his June 2, 2005 article, The Age of Autism: A Glimpse of the Amish, Olmsted interviewed Dick Warner, an independent vendor of water purifiers and “natural health” products who had contacted Olmsted to share his experiences among the Amish. Professing a “strong medical background,” though possessing no medical license in Pennsylvania, Warner claimed to have met “tens of thousands” of Amish, yet had apparently “never seen an autistic Amish child — not one.” Warner stated,

I know what autistic people are like. I have friends who have autistic children.

After citing the traveling salesman’s testimony without further scrutinizing the diagnostic criteria he employed to arrive at his conclusion that there are next to no autistic Amish, Olmsted shoehorned the phrase “hidden horde” into his narrative:

People like Warner make it harder to accept the first argument, that hundreds of autistic Amish are some kind of “hidden horde.”

Expert Witnesses on the Mercury Stump

June 2005 also saw the publication of Robert F. Kennedy, Jr.’s article, Deadly Immunity on Salon.com and in Rolling Stone. Drawing heavily from information provided by Lujene Clark, founder of the political action organization NoMercury, Kennedy painted a shocking picture of bureaucratic heartlessness, conspiracy and cover-up. In Kennedy’s article, University of Kentucky chemistry professor Boyd Haley scoffs:

If the epidemic is truly an artifact of poor diagnosis… then where are all the 20-year-old autistics?

With his assertion to Kennedy that ASD adults are nowhere to be found, Haley seemed to have forgotten his own recent experience of communicating with numerous ASD adults (ranging in age from teens to sixties) in October 2004, after his coinage of the phrase mad child disease to describe autism was publicized and a petition launched in protest. Professor Haley acknowledged these communications in a letter to antivaccinationist Sheri Nakken:

I did not even know of the group of individuals who were autistic as have written to you and me…

One would not know from reading Kennedy’s article the source of Professor Haley’s supposed expertise in the area of autism diagnoses and prevalence. His specialty, chemistry, generally does not encompass the fields of differential diagnosis, epidemiology, psychological evaluation or the history of autism; his record of NIH funding indicates no grants for research in autism, and no grants for any purpose since 2000. Futher, either Professor Haley failed to disclose, or Kennedy failed to report, that he is an expert witness serving plaintiffs in the Omnibus Autism Proceeding. Such a role is usually generously compensated.

In December 2005, the Boston Globe Magazine published The Secret Truth, by Dr. Darshak Sanghavi, assistant professor of pediatric cardiology at the University of Massachusetts Medical School. The article featured an extensive profile of the Hansen family of Framingham, Massachusetts, both of whose sons are autistic. In that article, parents Jared and Marjorie Hansen expressed their belief that their sons’ autism was caused by vaccines, a conclusion from which Dr. Sanghavi respectfully differed. Eventually, Jared Hansen wrote a letter to the Globe reiterating his perspective on the matter. Another letter supporting the Hansens’ assertions about thimerosal was submitted by Richard Deth, a professor of pharmacology at Northeastern University. Professor Deth’s letter was written within hours of an alert issued by the coordinator of the “Mercury Free Vaccines Coalition,” requesting that “each of our experts” provide refutations to Dr. Sanghavi’s arguments.

The Hansens and Professor Deth eventually found a sympathetic ear in Jon Brodkin, a reporter for the Waltham Daily News Tribune. In Brodkin’s article, The Needle and the Damage Done, Professor Deth expounded on thimerosal’s supposedly causal role in autism, then offered his opinion on changing trends in autism prevalence, speculating that the incidence of autism will decline following removal of thimerosal from most vaccines, and asserting that statistics emanating from California’s Department of Disability Services were already bearing this out. He then parroted Mark Blaxill’s question:

This so-called hidden horde, where are they?

Professor Deth offered no answer to the question. He did not qualify his opinions about autism diagnostic trends with the California DDS’s own caveat that their statistics cannot be used to determine autism prevalence. Like Professor Haley, he offered no information about the source of his supposed expertise about autism prevalence — a critical omission in light of the fact that his academic specialty does not encompass the fields of differential diagnosis, epidemiology, psychological evaluation or the history of autism. (Indeed, autism is nowhere mentioned on his Northeastern University biography.) The NIH CRISP database gives no indication that Professor Deth has ever received NIH funding as a principal investigator conducting autism research, and gives no indication that he has received NIH funding as a principal investigator for any research after 1998. One would not know from Brodkin’s article that Professor Deth, like Professor Haley, is an expert witness serving plaintiffs in the Omnibus Autism Proceeding.

The phrase or concept of the presumably mythical “hidden horde” has also found a home in the writings of British professionals newly converted to the autism=poisoning hypothesis. In her August 8 article Autism: The Mercury Trail, Margaret Cook stated flatly:

The extraordinary increase in autism among children — one child in 166 now suffers from an autism spectrum disorder — cannot be explained away by better recognition and diagnosis, as claimed by psychiatrists. If it were so, where are all the adults with covert autism?

Although at the end of the article, Cook is described as a “retired consultant haematologist, formerly at St John’s Hospital, Livingston,” such credentials do not suggest any particular expertise in autism epidemiology.

At a presentation at the October 15, 2005 “Treating Autism” conference sponsored by “Action Against Autism, clinical psychologist Ken Aitken stated:

There are few recent studies which have attempted to document the prevalence of ASDs in adult populations. Burd and colleagues in North Dakota estimated 3.26 per 10,000 in those born between 1967 and 1983 (Burd, Fisher & Kerbeshian 1987; Burd, Kerbeshian, Klug & McCulloch 2000). In Sweden, Nylander and Gillberg (2001) found a prevalence rate of 2.7 per 10,000, screening previously undiagnosed adult psychiatric outpatients. These findings do not sit comfortably with a high rate of ‘missed’ adult cases due to changing diagnostic criteria or to improvements in clinician recognition with a steady population incidence rate.

Aitken previously appeared as an expert witness at public hearings called by the Scottish Parliament to investigate the safety of MMR vaccine, has served as an expert witness in MMR vaccine injury cases, and has more recently begun to espouse the idea that autism is a consequence of thimerosal poisoning. Although Aitken cited Mark Blaxill’s references, he did not cite the businessman/activist as the source of the above interpretation of the Burd and Nylander studies.

Continuing Cries of Denial

Crusading parents and parents’ organizations have also taken up the cry of strategic denial. Generation Rescue’s “Rescue Angels” promote the concept that all autism is a misdiagnosis for mercury poisoning; many of these volunteers are plaintiffs in Omnibus Autism Proceeding cases. The “hidden horde” question appears on their website as a rebuttal to the supposed “myth” that better diagnosis can account for a significant proportion of recent increases in autism diagnoses:

If there is no epidemic, then where are all the autistic adults?

“Rescue Angel” Michael Wagnitz offered the “hidden horde question” in a December 2005 interview with a reporter for the Wisconsin State Journal:

So when they say they’re doing a better job of finding them, I say, ‘Then where are all the 30-year-olds and 40-year-olds with autism?’

In a letter written in early 2006, Robert F. Kennedy, Jr. again represented his informants’ conclusions about autism prevalence as if they were his own. Kennedy here appropriates Mark Blaxill’s question, and includes a grotesque visual analogy borrowed from Boyd Haley to heighten its impact:

Missing autism is like missing a train wreck. In any case, if it’s just diagnostic then where are all the 30-year-old autistics? Why is autism mostly confined to children born after 1989?

From one speaker to the next, the age-range of the presumably nonexistent cohort of ASD adults changes. What remains constant is the speaker’s attribution of autism causation to vaccine damage; and, in many cases, either a direct financial interest in the outcome of pending personal injury litigation, or a personal relationship with individuals having such an interest.

Ambiguity in Academia

The suggestion that there are insignificant numbers of adults whose developmental pattern was similar to that of children now diagnosed autistic has percolated beyond the popular sphere into the academic and clinical realm. For example, in December 2005, epidemiologist Dr. Eric Fombonne gave a lecture entitled, Autism: Have Child Immunizations Created an Epidemic? at the UC Davis MIND Institute. After an extensive discussion of epidemiology and the history of autism diagnosis, Dr. Fombonne concluded that there is no “autism epidemic,” and no reason to suspect either the MMR or thimerosal-containing vaccines as a possible cause of autism.

After the lecture, MIND’s Executive Director Dr. Robert Hendren, posed this question:

I have a question that people have asked, and I’m sure you’ve heard it a million times: Say if we think that the rates of autism are fairly similar or they haven’t changed or that there’s an expanding diagnosis but not necessarily a real change or only a slight change, people say, well, then, what happened to all those people we missed? Why don’t we see them in nursing homes or mental institutions? Where have they gone? We know they wouldn’t get better on their own. They must still be there. Have there been any studies to try and look at people in their fifties to see whether the incidence or prevalence of autism is the same in that group as it might be in another?

In his response, Dr. Fombonne discussed the phenomenon of “diagnostic shift,” by which individuals diagnosed with one or another “childhood disorder” are given a different diagnosis in adulthood. For example, in France (where many clinicians were trained in the psychoanalytic tradition), adults diagnosed with autism in childhood are often identified as suffering from a “psychosis” in adulthood — a practice with which Dr. Fombonne heartily disagreed.

Dr. Hendren may have posed this question to provide Dr. Fombonne an opportunity to articulate his opinion on the subject; or to serve as a voice for others unable to attend the lecture. One can only hope that the head of one of the country’s premier autism research centers would not assume that autistic adults do not exist simply because few cross the threshold of his admittedly child-centered clinic; or that ASD children who have matured and achieved a degree of social competence are somehow “no longer autistic”; or that ASD adults are incapable of living freely in their communities.

Although Dr. Hendren did not speak the phrase “hidden horde” openly, the meme lay right at the center of his question. That meme has traveled a long way since it was first introduced by Mark Blaxill in his letter to the British Medical Journal four and a half years ago.

Challenges of Assessment

It is not exceptionally difficult to study the prevalence of autism in the child population, nor particularly surprising that children’s autism is increasingly being recognized at an early age. Modern parents, doctors and educators tend to pay very close attention to children’s development. Timetables of typical development are often consulted by parents who assiduously track their children’s arrival at various milestones. Children often make regular visits to pediatricians who are increasingly familiar with the characteristics of autism. Children are often sent out of the home at an early age into group day care, preschool and recreational settings where any socialization or behavioral difficulties become readily apparent. Children are dependent upon their parents, and conscientious parents are likely to be motivated to obtain a diagnostic evaluation for a child if they see that the child’s differences are causing problems, especially if a diagnosis is required in order to obtain appropriate educational and health services.

Adult diagnosis presents a very different set of dynamics. Although undiagnosed ASD adults may face problems related to their autism, many may not be motivated to obtain a clinical diagnosis. People on the autistic spectrum tend to value their privacy, and are often not inclined to share personal information. Some have difficulty explaining their thought processes and emotional states to others. Some may have been subjected to professional scrutiny in childhood, and do not welcome further examination. “Odd” folks may not be motivated to submit themselves to psychological examination if they have attained a degree of social and environmental adaptation that enables them to function independently and “pass” for neurotypical, or if their economic means or level of family support enables them to live without state-funded services.

In fact, there are many reasons for adults to avoid seeking a diagnosis; among these are stigma, potential loss of legal rights (including child custody), and the potential for negative treatment from employers, colleagues and others who might learn that a person has been identified with a label erroneously associated with “mental illness.” All too often such a label leads people to assume that the labeled person is inherently violent, or only fit to live in a nursing home or mental institution.

Furthermore, there seem to be few outreach programs or clinics that seek to identify adults with ASD-related problems; few clinicians possess expertise in diagnosing ASD in adults. Nonetheless, opportunities to determine rates of ASD in specific populations of adults do exist. For instance, universities provide accessible pools of subjects already grouped into areas of interest and aptitude — a subject of direct relevance to the study of ASD given existing research that suggests a statistically significant incidence of autism in families of engineers and mathematicians.

The recent census of homeless people in Los Angeles County, California, in which approximately 88,000 were counted, demonstrates that efforts to assess even an elusive population are within the realm of possibility. If they chose to do so, research institutions might seek to identify what proportion of “mentally ill” homeless people might be more accurately diagnosed as autistic. However, there is little public impetus to conduct such a study. With respect to personal impetus, someone who is homeless is more likely to be worried about getting enough food and having a dry place to sleep for the night, than about obtaining a psychiatric diagnosis. Those who are homeless after release from institutions for the mentally ill or developmentally disabled might be reluctant to take any step they fear might result in their return to “the snake pit.”

There seems to be little motivation on the part of many research institutions to study autistic spectrum adults. On the other hand, there is significant motivation to study and serve the child population; this is a consequence of psychological and market factors. Kind-hearted, altruistic adults instinctively seek to nurture vulnerable children. Understandable and legitimate sympathy flows to families who face the challenge of raising disabled children, and that sympathy often translates into popular support for the goal of eliminating those challenges entirely. Political and fundraising appeals featuring disabled children successfully leverage emotional impact into donations. Researchers are likely to gravitate towards work for which they can obtain financial support. Supply responds to demand.

Far less compassion is forthcoming for disabled adults. Individuals and institutions dedicated to seeking cures for disabilities that first manifest in childhood often give short shrift to the daily needs of adults for whom those disabilities are a permanent part of life. To many, disabled adults are seen as undesirable social burdens, symbolizing failure, invoking fear, and representing a sad reminder that “there is yet work to be done.” Indeed, the inaugural edition of the Autism Society of America’s Getting the Word Out website exploited such imagery for fundraising purposes with the doom-laden pronouncement:

Even more devastating is one day, that child living with autism, will grow up to be an adult living with autism.

Although many ASD adults might be identified among the parents of diagnosed children, many clinicians are reluctant to broach the possibility that a parent might also fall somewhere on the autistic spectrum, reasonably anticipating that the parent might be disturbed or offended by the suggestion. Reports of recent studies showing a high prevalence of “psychiatric disorders” among parents of autistic children have been defensively interpreted by some parents as revivals of the argument that autism is caused by parental deficiency. Similar reactions have also greeted announcements of new findings in the field of genetics; many people have a deep-seated resistance to acknowledging the possibility that socially-devalued and troublesome characteristics might be genetically transmitted. Clinicians recognize this, and some are likely to avoid “making waves” if wave-making is not necessary to further a child’s well-being. This might be less of a problem if there were greater popular acceptance of cognitive and emotional diversity, and of the fact that a significant proportion of humanity experiences difficulties resulting from conditions and behavioral patterns formally classified as pathologies.

It is unlikely that the incidence of ASD in the adult population will ever be verified in a manner that allows its declaration as uncontestable scientific fact. However, the evidence for a stable incidence of autism over time is very strong. Clinical reports by early researchers such as Leo Kanner, Hans Asperger, Leon Eisenberg, and others indicate a significant incidence of ASD traits among the parents of children diagnosed autistic over the first thirty years of that diagnostic category’s existence. It is reasonable to assume that the parents described by these researchers would have been born between 1910 and 1935 — before the pharmaceutical use of thimerosal, and before the identification of autism as a distinct diagnostic category. It is also reasonable to suggest that these parents would have represented a subset of the population of individuals with ASD traits – i.e., those who reproduced. In their discussions of the history of psychiatry, Leo Kanner, George Vaillant and Darold Treffert have all called attention to terminology used by 19th and early 20th century pioneers in child development (such as J. Langdon Down and John Haslam) to describe ASD traits in their patients.

The testimony of those who have recognized their own autistic developmental pattern and persistent cognitive traits should be given considerable weight in any consideration of the incidence of autism in adults. Such testimony is abundantly available, both in print format and on the Internet. Indeed, the Internet has revolutionized the capacity of adults with difficulties in socialization and communication to forge relationships and convey their ideas and experiences to the world.

There is little risk and great potential benefit to be derived from acknowledging the likelihood that as many adults as children could be diagnosed with autistic spectrum conditions if they so desired. It is no more speculative and far more compassionate to entertain such a reasonable notion than it is to categorically deny its possibility. There is no harm done to autistic children by acknowledgement of the existence of adults on the autistic spectrum. Such acknowledgment should not jeopardize the search for justice of families who have evidence that their children have been injured by vaccines.

However, it is unjust and mean-spirited for anyone to employ legal and political strategies to further unverifiable claims of widespread vaccine injury that entail contemptuous denial of the existence or legitimacy of mature individuals whose life challenges are similar to those that autistic children and their families currently face. Such denial oppresses ASD adults who seek to communicate their experiences, needs, opinions and concerns, and if allowed to persist, will work to the detriment of everyone on the autistic spectrum.

Comments


  1. I must be one of the hidden horde. I was odd and unsocial as a child, but in the 1960’s we were graded on academics (where I excelled) and not on our social skills. I had little social life until college at an engineering school, where I met my engineer husband. We have 3 kids, 2 on the spectrum. If you want to see the hidden horde, walk around the math, physics and engineering departments of any good university. My engineer brother only recently revealed he is face blind. For 50 years he has hidden this disability-the rest of the 1 in 166 are doing the same.
    Thank you again for your intelligent, rational writing!

    — Ruth    2006-03-06 12:52    #

  2. Excellent Kathleen. Thank you.

    — Dad Of Cameron    2006-03-06 17:02    #

  3. I always marvel at how you marshal together all these threads and tie up the loose ends. You’ve proven our case over and over, yet the mercury fanatics just deny everything. I’m a near 60 yr old member of the hidden horde.

    — Clay    2006-03-06 17:19    #

  4. The quality of your writing always takes my breath away.

    — Kathleen Fasanella    2006-03-06 17:47    #

  5. Echoing Kathleen Fasanella, may I add,

    “A thing of beauty is a joy forever.” (Keats)

    This essay a beautiful thing.

    Thank you very much.

    — Ms Clark    2006-03-06 17:58    #

  6. I used to be a part of that 1:166, but to paraphrase Mae West – I drifted.

    if you really want to see the future hidden hordes – head to the ARI website and peruse the ‘cured’ specimens. They’re no more cured than I am. Where is it written in stone that one cannot learn to do some kind of facsimile of the social dance at least enough to get by. I like people – they’re a totally fascinating kind of animal – strange and not terribly logical most of the time but fascinating. Our kind aren’t all that wonderful all the time either. Just take a look at John Best Jr. Almost definite that he’s spectrum but does anyone want to own up to it?

    — Alyric    2006-03-06 21:04    #

  7. applause

    I stand in awe. This kind of essay goes above and beyond average blogging.

    — Bartholomew Cubbins    2006-03-06 21:05    #

  8. Sign me up for the ‘Hidden Horde’, then.

    I’m 23 years old by 2 days, diagnosed at 19, obviously LD in SOME way since, basically, birth. I spent my entire school career under one diagnosis after another and being tested for everything you can imagine (including mercury/heavy metal poisoning…I was clean, for the record) but never actually given a diagnosis that both fit and stuck until the DSM was changed to include ‘high functioning’ sorts and Asperger’s cases…

    — El Juno    2006-03-06 21:27    #

  9. Sheer Beauty.

    — HJ    2006-03-06 21:28    #

  10. Thanks so much for your blog and website. I’m extremely grateful for you and the other bloggers for putting so much work into this area of advocacy.

    Nana ( aunt to one of the “hidden horde”)

    — Nana    2006-03-06 22:19    #

  11. In word? WOW!

    — notmercury    2006-03-06 22:27    #

  12. I wish this were required reading in all psych 1 courses at all colleges and universities.

    — Ms Clark    2006-03-07 03:15    #

  13. Thank you for that.

    Ken Aitken was at an autism and Health Conference about a month after the ‘Treating Autism’ conference. No mention of those figures. Perhaps that’s because there were a number of autistic adults in the audience; an autistic adult (in his 30s I think) talking about his experience of getting a diagnosis about two years ago; a woman talking about caring for her adult daughter with autism.

    I’m currently begging one of my friends (aged 22) to look into an autism diagnosis. She functions, she works, but she collapses at the end of the day. How many more people like that are there out there – to all intents and purposes invisible.

    — MW    2006-03-07 03:53    #

  14. The fact that large numbers of people are being forced to live “in hiding” because of our society’s extreme bigotry against autistics is disgraceful.

    Even Bill Gates, the world’s richest man, doesn’t dare to “come out” as an autistic man because there is so much prejudice.

    Thank you, Kathleen, for being so steadfast in standing up for the truth.

    — Bonnie Ventura    2006-03-07 19:15    #

  15. My wife (29) and I (32) both count in the “hidden horde” ... both high-IQ socially crippled ASpies, both with a physics BS, math minor.

    We constantly discuss how to handle various social situations and we back each other up in public gatherings … when one is talking, the other crowd-watches and signals the speaker when its time to shut up, etc.

    We are both emotion-blind as compared to face-blind but we have both learned to mask / hide our unusualness (mostly).

    Nearly everyone expects females especially to be nonstop fountains of emotion, so she is bombarded with people asking her if she feels unwell.

    We had never heard about Aspergers until 10 or 11 months ago … but everything we read from ASpies and about it describes our existence for the last 3 decades. We are both unusually well read and I had never come across anything sufficiently descriptve about AS for me to recognize myself in until I actively went looking for info about autism. Note also that all four of our parents strongly disagree about our condition and do not believe in any of that psych $#!+, like the existence of AS.

    — Mark Wood    2006-03-08 15:19    #

  16. WOW! I just found your site and I’m overwhelmed! My son was diagnosed at age 4 and I joined the local autism society chapter. I quit after about 10 months b/c there was no room for my view – there’s nothing wrong with my son. He is simply different. I also have an aunt that I have no doubt is Aspie. She’s always been “eccentric” and tends to obsess. But there is no incentive for her to get a diagnosis – she likes her life the way it is and is in her 50s. The hidden number are definitely there!

    — MRBmom    2006-03-09 10:00    #

  17. On my last visit home, it really hit me how like my father my middle daughter is. For 52 years my mom did most of the talking, now that she is gone there is so much silence. So here is one 86 yr-old who is probably on the spectrum. My grandma was probably OCD, but since her obsesion was cleaning, it was seen as a virtue. I think only 1 brother and 1 sister in my family are completely normal, my mom was likely ADHD. Growing up everyone commented on how studious we were, and how we spent so much time with our parents. This was seen as a good thing, not as poor social interaction. Lots of my weird but bright relatives lived on their own 100 acres, so no one bothered about their odd behavior. I think the rise in autism awareness is related to urbanization and the sending of children out of the home before age 6. Temple Granidin has commented that many bright autistics are being kept out of gifted programs that they would have been placed in before the Aspie catagory existed.

    — Ruth    2006-03-10 09:35    #

  18. This is a lovely piece of work. Thank you. I just wanted to add one additional point. In diagnosing an adult with full spectrum autism, it is necessary to show that the characteristics of autism appeared before the age of 3. Many adults would no longer have parents who could attest to this qualification, and so could not be diagnosed.

    — Jennifer    2006-03-10 16:37    #

  19. It is sad to see so much parading of ignorance. This is not a simple subject everyone can quickly become expert at. Sure Bill Gates is a bit aspy. But he is certainly not classic autistic. Ditto all those married people. Full-blown autistics do not get married, period. They would be screaming and tantruming and handflapping all the time. And too dumb to have a job or hold a conversation. No, these people (!)writing(!) here are not the hidden horde.

    Yes there is a lot of poor work on all sides of this debate. But that doesnt make the opposite view correct.

    The bottom line is three facts.

    1 – All the epidem data shows an (apparent) increase.
    2 – Rimland (40 years experience) and Lisa Blakemore-Brown (30 years) testify like others that they have personally observed this increase in behaviours.
    3- The deniers of increase have zero facts to counter these two facts. All they have is an endless stream of excuses for denial.

    I rest my case.

    — RobinP    2006-05-19 19:10    #

  20. “Full-blown autistics do not get married, period. They would be screaming and tantruming and handflapping all the time. And too dumb to have a job or hold a conversation.”

    Good Lord—what inaccurate stereotypes, and what malice towards autistics!

    — Kathleen Seidel    2006-05-24 08:54    #

  21. “The deniers of increase have zero facts to counter these two facts.”

    Oh really? You are hereby invited to rebutt the following posts:

    Autism Missed Often, Even Today

    No Autism Epidemic: Summary of the Numerical Evidence

    CDDS Data 101

    I rest my case.

    — Joseph    2006-05-24 11:49    #

  22. “And too dumb to have a job or hold a conversation.”

    Forgive me, but what an idiot. Not only is the statement pure bigotry, but factually disproven by Dr. Mottron’s recent research. Autistics apparently have more of certain types of abilities the more autistic they are.

    — Joseph    2006-05-24 12:28    #