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The Politics of Autism

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April is Autism Awareness Month and I have chosen to make folks aware of the complexities and conundrums surrounding its politics, which are replete with divisions, debates, and diatribes fueled by self-advocates, special interests, activists, militants, and conspiracy theorists. The two main camps — though each has its own sub-groups, factions, and radical element — consist of people who view autism as a devastating neurological disorder that must be cured, prevented, and eradicated, and those who see autistic people as having a natural variation of human neurological wiring that must be tolerated, accommodated, and respected.

The main reason why the politics of autism are so polarized is that nobody knows very much about autism, so individual perceptions and experiences, as well as popular conjecture and tendentious groupthink, are often used to bridge the rather wide gaps that modern scientific research has yet to definitively fill. In the province of the politics of autism, partisanship often appears to fall within the realm of constitution, character, and coping skills in dealing with having a child or other family member who is autistic, accepting the fact that some people are autistic, or being autistic in a society that marginalizes autistic people.

Autism is a permanent, life-long disability that presents in a wide variety of manifestations, which are diagnosed along a broad spectrum of dysfunctions and disorders. Typical features of autism are impaired communication and/or social skills, repetitive motions and/or behaviors, and obsession with rituals and/or routines. The cause is unknown and there is no cure. Hypotheses currently competing to become the emerging theory of autism’s origins are; that autism is very likely genetic, that there is a small chance autism could be caused by environmental factors, and that autism may be the result of some as yet unknown serendipitous convocation of nature and nurture.

The only widely accepted, standard treatments for autism consist of modalities that help autistic people to function in society according to their individual abilities. The most common intervention for autistic children is enrollment in an exceptional education program that includes speech and occupational therapy. Medication is usually not prescribed to treat autism itself, but appropriate drug therapy can be helpful to autistic people who suffer from comorbid conditions, such as difficulties with digestion, allergies, or seizures.

Although autism can be very hard for families to confront, and is sometimes difficult for autistic individuals themselves, autistic people of nearly every apparent ability can lead satisfying lives; attend college, earn a living, get married, have children, etc — if they so choose. Some autistics have used their exceptional perspicacity to make innovative contributions to society, and a number are published authors, and/or respected authorities in their individual areas of expertise.

The Autism Rights Movement

The advent of the Internet has made it possible for autistic people to communicate their perspective with one another and the world. Some autistic adults can write very well despite being mute, and they are quite able to effectively, and often rather eloquently, present their case for the recognition of autistics’ rights and societal acceptance of autism. A number of autistic people also express their point of view via Internet video.

The Autism Rights Movement, which was started by autistic adults who feel marginalized by characterizations of autism as a tragedy, a disease, and an epidemic, demands acceptance for neurodiversity, the concept of atypical neurological wiring being a naturally occurring variation of the human condition that should be tolerated and respected like any other form of human diversity. It is for this reason that autistic people usually avoid the word “normal” when describing people with conventional neurological wiring, instead preferring to use the term “neurotypical.”

Many autistic people have articulated that they are very offended by the idea of curing and preventing autism, a notion which a number of them consider tantamount to genocide. They believe a cure for autism would destroy autistic people, and their culture, in a misguided attempt to replace them with different, neurotypical, people. The vast majority of autistic people who can communicate their sentiments via the written or spoken word do not desire a cure, but rather to be afforded opportunities to use their unique skills and perceptions in useful and productive ways.

In addition to challenging descriptions of autism they consider incorrect, and/or insulting, the goals of the movement are to question the ethics and science of new and/or experimental treatments for autism, expose quackery and fraud, persuade autism charities, schools, and other organizations to invite autistic adults to serve on their advisory boards, and appeal to governments for better public education programs for autistic children and improved social services for autistic adults.

The view that autism is not a disorder but simply a different way of being is presently a controversial idea that is strongly criticized by parents who hope to someday see their autistic children become neurotypical, as well as by the individuals and organizations that capitalize on families who are, for better or worse, possessed of such wishes.

The controversy does not originate from the practice of treating severe manifestations of autism — self-injurious behaviors, seizures, allergies, etc — as most people agree that that such problems should be addressed to the best ability of medical science, and that no halfway decent parent would allow a child to suffer sickness or injury if there was proven medication or therapy available to ease that child’s pain.

What causes most of the friction between autistic people and the neurotypical folks they sometimes refer to as “curebies,” is the belief that the non-medical, non-injurious aspects of autism, such as arm flapping, toe-walking, spinning, repetitious behaviors, narrow interests, withdrawal in social situations, etc, should be treated aggressively, sometimes by experimental or scientifically questionable means, in the hope that the autistic child will eventually appear/become neurotypical.

This is also where the neurotypical families of autistic children are divided into those who can accept and cope with the cold facts of autism’s prognosis (and accept and cope with their autistic children as they are, understanding that any extraordinary efforts to change them into neurotypical children could very well cause those autistic children to grow up into autistic adults who blog about neurodiversity and autistics’ rights, or what it’s like to live in a society that frequently treats them like hopeless freaks, or maybe even how terrible it was to endure being the subjects of experimental autism treatments), and those who, for various reasons, cannot.

The Autism Cure Constituency

The pro-cure side of autism’s political spectrum consists of two symbiotic entities; tragic families who need to believe in the hope that their autistic children can be cured, and the people who exploit them, and their autistic children, with questionable science, inspiring yet unverifiable anecdotes, and conspiracy theories.

When a child is diagnosed as autistic, some families go into a state of shock and denial, disparaging doctors and other experts who tell them that autism is incurable, and seeking practitioners who will tell them differently. Such families are usually in mourning for a neurotypical child they believe is “trapped” inside, behind, or under the autism; a conviction which not only keeps them from learning to accept and cope with the autistic children they actually have, but also makes them vulnerable to the specious claims of unscrupulous purveyors, of “alternative” treatments, who purport to have had some measure of success in “recovering” children from autism.

Some families are willing to sacrifice everything, and pay whatever it takes to whoever presents a convincing case for some miracle treatment or cure, which usually involves methodologies the mainstream medical community has either sharply questioned or completely rejected. These unfortunate people periodically become consumed with guilt that they are not doing enough, and/or fear that their child will not progress if they do not completely dedicate themselves to his or her recovery, an endeavor in desperation and futility, which sometimes leads to indebtedness, divorce, alcoholism, and depression.

Today’s medical con artists do not fit the ubiquitous historical image of the 19th century “snake oil salesman,” peddling elixirs out of his horse-drawn wagon. They know that, if they want to make the big money, they will have to appeal to the intellects of sophisticated people who are highly educated. Their literature, which has even fooled a few MDs, contains scientific terminology and selective quotes from valid medical references. Once they convince parents on an intellectual level, it then becomes a simple matter of exuding geniality and confidence while manipulating the family’s wishful thinking, because what these swindlers are ultimately selling is false hope, which can be more addictive than any drug.

The current trend in the pseudoscience of experimental autism treatments administered to live human pediatric subjects is chelation therapy, which has a valid medical use in some cases of heavy metal poisoning (most commonly people exposed to the effects of industrial and laboratory accidents), but is also falsely claimed to be effective against autism, and several other conditions, such as cardiovascular disease, arthritis, multiple sclerosis, psoriasis, and erectile dysfunction.

Chelation practitioners often make the unfounded assertion that autism is caused by lead, mercury, environmental toxins, and/or childhood vaccines that contained thimerosal, a preservative that was discontinued in 2000, mostly due to specious fear mongering that had the effect of frightening parents about having their children vaccinated against dangerous and deadly diseases.

Regardless of the fact that autism is not mercury poisoning (autistic children do not exhibit the peripheral nerve damage or other physical symptoms that are characteristic of mercury poisoning, there is no scientific evidence to support speculation that autism has a toxic cause, and no link between mercury poisoning, thimerosal, and autism has ever been proven with scientific research that withstood the scrutiny of legitimate peer-review) bright and well-read parents nonetheless continue to fall for chelation and give it substantial credit for their autistic children’s developmental progress — despite the fact that, as autistic children mature, they learn new skills and their abilities naturally improve, without any sort of extraordinary intervention.

The “Debate”

Autism cure debates are hotly contested in certain circles of cyberspace where all the families want “what’s best” for their autistic children, which is usually the main point of contention. The flames are ignited when those who think it’s best to embrace their autistic children’s unique neurological wiring try to warn parents who think it would be better to somehow “fix” it, that they are wasting their time, energy, and money on false hopes peddled by quacks.

Firm in their conviction that simply accepting autism as part of their children and their lives would be like giving up on the children they feel they lost to autism (and also inferring that they are being judged as rubes), the pro-cure parents respond, with fervent certitude, using their extensive knowledge of pretentiously written, but seriously flawed, scientific literature about discredited and/or untested hypotheses, and experimental therapies that can only be validated by testimonials, and popular conjecture about some ambiguous relationship between vaccines, toxins, and autism.

When autistics and their neurotypical advocates subsequently attempt to lecture these mostly intelligent and well-educated people in scientific methodology, the difference between hypotheses, scientific studies, clinical trials, emerging theories, and accepted theories, and how correlation and causality are not one and the same concept, the pro-cure families respond with their theories about how the international mainstream medical community, and the governments of several nations, in cahoots with the pharmaceutical industry and various and sundry regulatory agencies of the industrialized world, have conspired to hide the “truth,” in which they have so vainly placed their hope and faith.

Lamentably, these debates are mostly unproductive. Regardless of their religious persuasions, most people naturally put their faith in whatever notions or sentiments lend them reassurance and comfort, irrespective of plausibility. When challenges to their beliefs make people feel uncomfortable, it is a matter of the faith and/or doubt in their hearts and minds, but their vanity usually keeps them from contemplating that possibility, thus the flame wars continue.

Paving the Parkway to Perdition

Parents and families who have survived all of the stages of adaptation and learned accept that their children are autistic, and autistic people — whose firsthand perspective on autism should be considered invaluable to any discussion of the topic — want very much to offer their comfort and guidance to families who are struggling with the challenges of adjusting to the knowledge that their children are autistic. They do not intend to make these families feel guilt or shame about their parenting choices (though that methodology is sometimes employed after appeals to reason and logic inevitably fail).

Because it is ordinarily less difficult to get the attention of an autistic toddler engaged in stimming activities than it is to break through the wall of injudicious and tenacious pride that encircles neurotypical people who have become intoxicated with false hopes, some neurodiversity advocates eventually become frustrated and make insensitive, and even hostile, remarks that offend and agitate the people they are sincerely trying to rescue, in the hope that those people might finally wake up and perhaps try to learn how to communicate with their autistic children instead of trying to force them to talk like a neurotypical.

The genuine intent of autistic and neurotypical people who promote the acceptance of neurodiversity is to help people who appear to be having difficulty dealing with the fact that their children are autistic by attempting to convince them that giving up their fight against their children’s autism is not an act of submission or surrender, but rather a simple matter of choosing one’s battles wisely and carefully. Once families understand and come to terms with autism and the realization that their autistic children will grow up to become autistic adults, their lives become less stressful, they save a lot of time and money, and they learn to enjoy life on the autistic spectrum.

Meanwhile, the folks who refuse to give up on their war against their children’s autism do not see themselves as unable to cope, for they truly believe that they are, indeed coping, by taking the initiative, and being proactive and determined to prevail by any means, even if the struggle entails allowing practitioners of alternative autism treatments to conduct medical experiments upon their autistic children. They are not “evil” people, they are loving parents and families doing what they believe is best for their autistic children because they understand the prejudices that people who are “different” must face, and they want their children to have a chance at blending into neurotypical society so that they can attain the happiness, independence, and success most parents want for their children.

Neurodiversity “converts” are hard to win because people must ultimately recover their own reason and rationality from inside, behind, or under their own anguished pride and prejudice before they see the light for themselves. Conversion is seldom a sudden revelation, for most people must first reflect upon the observations they make while traveling the path they have chosen, and contemplate the repercussion and ramifications of their choices over time, before they will be able to see the inconsistencies in the rubric and rationale of those who misled them.

No Autistics Allowed

There is one issue that both the neurodiversity and curebie crowds can agree upon; they do not care very much for the prominent autism charities that have cropped up over the past few years — though each group has very different reasons for their disapproval.

The majority of well-recognized autism charities dedicated to finding the cause and cure are motivated by the sincere altruism of notable and wealthy people, many of whom have autistic children or grandchildren. They tend to stay on the periphery of the politics of autism, and are generally neutral regarding popular speculation about the cause of autism and the efficacy of experimental treatments. The primary mission of these organizations is, after all, to raise money for research into the “puzzle” of autism, not to make claims of having already solved it.

People who believe that they already know the cause of autism, and how to recover their children from it, object to the way that autism charities refer to autism as a mystery, instead of disseminating literature about mercury, vaccines, and chelation (and lobby to get it covered by health insurance). Some even go so far as to accuse these non-profit organizations of being in on the vast conspiracy to hide this “knowledge.”

Meanwhile, autistic people and their neurotypical advocates do not understand why supposed autism “charities” do not appear to be interested in actually helping autistic people, or asking autistic people and neurodiverse families how they feel about autism and what kind of services and support they might need to cope. Autistic people also resent that autism charities do not invite autistic adults to serve on their advisory boards, for they are disabled and they do want and need benefactors who will fund research into how to best educate autistic children so they can reach their full potential, and how to assist and accommodate autistic adults so they can be productive and welcomed members of society.

Instead of reaching out to autistic people, however, these autism charities put up web sites and televise public service announcements that are extremely offensive to autistic people who cannot comprehend how so-called autism “philanthropists” could promote such patently negative images of autism and autistic people.

It is a fact of the economics of human nature that charitable organizations must first elicit pity before that can solicit money. Autism charities looking to raise funds for research into the cause and cure have produced, among other works, documentary-style films highlighting the worst aspects of autism; with loud, chaotic scenes of autistic children screaming, running around in circles, and throwing tantrums, intercut with shots of mothers tearfully telling the camera how difficult and hopeless their lives are. Indeed, raising autistic children presents many challenges that the parents of neurotypical children could not possibly imagine, but it never has to be anywhere near as awful as it is portrayed in these docu-melodramas.

These short movies may raise a lot of money, but they can be very troubling to watch for parents whose autistic children were only just recently diagnosed. A few parents have reported setbacks in their adjustment and coping processes after having viewed these short films.

Some neurodiversity advocates have asserted that these materials are partly to blame when parents are misled into subjecting their autistic children to questionable autism “treatments,” because these promotional devices depict autistics as “unpersons,” whose caregivers could ostensibly be considered exempt from ethical questions about conducting medical experiments upon live human children. A few autistics have expressed that they view autism fundraising collaterals as hateful “autism-phobic” propaganda that features cruel stereotypes, bigoted mischaracterizations, and the specter of eugenics.

The worst part of all this, for those who wish to help autistic people and their families to cope, rather than making people terrified of autism and autistic people, is that the very large autism charities have celebrity endorsements that get far more media attention and airtime for their pernicious point of view than actual autistic people who frequently articulate that “autism cure charities” do not represent, or speak for, them.

Autism Awareness

April is Autism Awareness Month and I hope that I have made some folks aware that there is a lot more to autism and autistic people than some old Dustin Hoffman movie, and those awful PSAs with the scary statistics (by the way, 1 in 166 is less than 0.5%). There are real people behind those numbers and they do not care for the way autism and autistic people are inaccurately depicted in the media, and how the only autism organizations that are well-known to people outside of the autistic community are charities that don’t appear to be very helpful to autistic people.

The politics of autism will, of course, continue to remain divided as long as con artists and conspiracy theorists can keep long-dead scientific hypotheses alive in the imaginations of families who have experienced great difficulty coming to terms with autism as a part of their lives.

Scientific research into autism is ongoing and new discoveries are being made, especially in the area of genetics. Once more is known about autism, perhaps the lines may be re-drawn, or they could be erased entirely. However, those possibilities currently lie in the distant future. Right now, autism is still a permanent, lifelong disability whose cause is unknown. Some people can deal with that, others cannot; thus the current state of the politics of autism.

(Full Disclosure: The author of the above commentary is a neurodiversity advocate and the neurotypical mother of four children; one diagnosed as autistic, one who is very likely to be diagnosed with Asperger’s Syndrome, and two who are neurotypical.)

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About Margaret Romao Toigo

  • http://whitterer-autism.blog.com mcewen

    A very interesting summary of many of the pertinent issues that face the autism ‘community.’

    I will watch with interest, to see the views of your commentators, to try and achieve a wider perspective myself.

    Best wishes

  • James

    Well done.

  • Ms. Clark

    Not bad for a retired stripper. :-)

    Thank you. I think this is a nice summary of the situation.

  • http://www.glosslip.com Dawn

    That was incredibly comprehensive and as usual, extremely well-written.

    So far, both of my children exhibit what you call neuro-typical behavior, but really, what is that?

    Within their “normal” modes of operation, both of my children exhibit behavior at any given time that I find abnormal, or from my perspective “unacceptable.”

    I worry at times that the extremes in either of them are some sort of defect. But as time progresses, what I think I am seeing are my own neurotic behavior in its most raw and uninhibited form without years of discipline, sometimes punishment and certainly a growing self-awareness to curb these actions.

    In essence, I think my point is how do really know what is or is not normal in a child, when children come in every combination of strangeness in the rainbow and it seems our job is to mold them into some kind of conforming robot?

    I think both of my kids are a little nuts to be honest. But totally awesome!

  • http://www.adventuresinautism.com Ginger Taylor

    I think that the disclaimer should be listed at the top of this article rather than the bottom.

    It is extremely biased Op Ed piece presented as an article.

    Ginger Taylor…
    An “extremist” whose son stopped talking after vaccination and now talks after feeding him “snake oil”

  • http://www.photoninthedarkness.blogspot.com Prometheus

    As a counterpoint to Ginger, I am related to a young lad who also lost his language and regressed into autism following his 15 month vaccinations. He has also “recovered” speech and social interactions, but without the use of “snake oil”, chelation, etc.

    The problem with anecdotes is that they can always be trumped.

    Prometheus

  • http://www.kevinleitch.co.uk/wp Kev Leitch

    I would hope Ginger would pass on her sage advice to the writers at places such as The American Chronicle.

    Thanks for a great read Margaret.

  • GrammaKnows

    No “neurological damage” like from mercury poisoning?

    That explains why my grandson, after 6 months of massage and supplements to repair nerve damage stopped sitting in the open freezer door, scratched his first itch, and decides on his own that he needs a jacket when its cool outside. Before we treated his metal levels and neuropathy, a two inch splinter in his foot didn’t bring a tear and he would insist on undressing and trying to jump in the pool in 40 degree weather.

    My 32 yr old son (Aspergers) told me the only thing he ever wanted was to be “normal”… to be able to go food shopping without tics brought on by fluorescent lights, to remember what he reads when it isn’t in his small realm of “favorites”, to make eye contact with a girl he really cares for, to know how to dress based on the temperature, to be able to eat in a restaurant.

    The flapping and spinning may not be so endearing when you are 65, your child is 45 and there is no one to tie his shoes or a residential facility with room.

    GrammaKnows

  • http://www.landofthefreehomeofthebrave.org/wp/ Margaret Romao Toigo

    Thank you all for commenting — even the criticisms are welcome because one cannot ever hope to attain distinction without a few detractors.

    As for all of your thoughtful questions, I will get to them soon.

  • http://autism-prevention.blogspot.com/ Leslie Feldman

    I want to point out that the extreme reaction to vaccinations that many autistic children experience could be because severe autism and PDD are ultimate autoimmune disorders. People with SLE/Lupus experience severe flares after some vaccinations. I believe that a great deal of sporadic autism is related to advancing paternal age 33 and beyond. Research has found older fathers over and over again in relation to autistic and schizophrenic people. My web site gathers the autism research related to autoimmunity, to paternal age, to possible X-linked older maternal grandfathers, etc. Autism is not one thing. The tiny copy number variations seen in the DNA of some autistic children during inspection by the micro array technolgy in the Cold Spring Harbor Laboratory study, published March 15th in “Science Express” probably also appear in the sperm making cells and some sperm of their fathers. I would urge everyone to learn the truth about the male biological clock: advancing paternal age and human genetic disease/disorders. I also suggest that young men cryobank sperm for any fathering of babies past 32 or 33. These ages are approximate. I would urge that older men not father babies. I do not find that the autism charities are at all interested in informing anyone about the scientific research on paternal age. Even Huntington’s chorea can be produced de novo by an older father.

  • Phil Schwarz

    Margaret,

    This is a beautiful, eloquent article.

    You expose and dissect many foregone conclusions and bits of “conventional wisdom”.

    There’s one, though, that you left unchallenged: “It is a fact of the economics of human nature that charitable organizations must first elicit pity before that can solicit money.”

    I think we should set out to prove that one wrong.

    What if, instead of “Autism Every Day” and “Getting the Word Out”, we had public relations collateral that eloquently illustrated the “make or break” difference that the right kind of help, advocacy, and support can have, in the lives that autistic people lead?

    The difference between lesser and greater autonomy in personal living situation; the difference between unemployment and employment, or between underemployment and valued, enriching work. The difference between childhood educational and developmental outcomes that are dead-ended, and those that open further doors.

    “With your help, they can succeed.”

    That’s not pity. It’s practical, sound investment. And I really do think that it can be effectively marketed to sell.

    — Phil, AS father of an autistic son and a daughter in the broader phenotype, married to their loving and patient nonautistic mom

  • Zaecus

    Excellent article.

    “I would urge that older men not father babies.”

    Leslie, do you still claim that you’re not advocating eugenics, specifically in this case, selective breeding?

    I, personally, would urge teenagers not to father babies, that seeming to be the far more irresponsible situation.

  • http://zenbullets.com/blog/?p=70 planet of the humans

    High Functioning Autism is a super-power, not a disability.

    I make my living as a Programmer, and in my field to be any good, to be able to talk to a machine better than you can a human being, it really helps to have a touch of autism. Many of the best in my field are high functioning autistics.

  • http://skjl389p vsheehan

    What about the kids who do not have an amazing gift that could pay the rent? What about the kids who can not control their emotions and are suffering for that? Where is the amazing gift of neurodiversity in that? This writer speaks of pseudo science on the side of parents wanting better lives for their kids but bases all her points on the pseudo science of neurodiversity. The VA shooter the kid in Sudbury and the kid in California all suffered from an autism spectrum disorder. They went out and killed because of the loneliness caused by the disorder. Where is the gift in that?

  • Lucas McCarty

    Why is it curbies go on about the lonliness and issues *speculated* to be caused by Autism but leave out that which is *definately* caused by the patently hostile enviroments they put around us?

  • http://www.landofthefreehomeofthebrave.org/wp/ Margaret Romao Toigo

    Ms. Taylor, I just checked, and the word “OPINION” appears at the top. If this article was intended as news, it would read, “NEWS” at the top, and there would be no slant.

    Here are some anecdotes for everyone. Of course testimonial “evidence” is not scientific proof, but I really enjoy telling stories about my kids and Dawn did ask about that often fuzzy line between weird, but normal in the clinical sense, and autistic.

    My son never spoke a single English word until he was about 4 1/2 when he walked up to me one day and said, clear as a bell, “Now available on video and DVD.” I almost fainted!

    Now, if I had been giving my son some drug or vitamin, or other treatment/therapy, I may very well have thought that that was what had caused him to suddenly start speaking clearly and articulately — and sometimes even relevantly.

    However, I didn’t do anything whatsoever to try to teach him how to talk, and he hadn’t even started speech therapy at that point. He just started speaking, just like he started playing preschool video games when he was about 3 1/2.

    We didn’t think any 3 1/2 year-old was ready to learn how to use the computer, so we didn’t try to teach him; but he was always lurking around and watching while we taught his older sister, who was 5 at the time.

    Go figure. But, then again, an odd pattern of development – not simply a little off schedule one way or the other — is one of the most common signs of autism.

    My youngest daughter, who is now one month shy of 5 and whom I suspect will be diagnosed with Asperger’s, also started talking in whole sentences, but she was only 1 year old. She didn’t start with single words followed by two word phrases like neurotypical children learning to speak; she spoke in whole sentences — and not “baby-talk,” but with proper pronunciation. “Look, mom, it’s a butterfly!” she said, after having seen a butterfly

    Go figure. And while I’m at that, I will contemplate what might be going on in her head when she spends hours staring off into space or out the window or at some toy or other object.

    Now, neither one of them can use the toilet or get dressed without assistance — and maybe they never will — but I try not to focus on things like that because I know that they’ll learn when they’re ready, if they want to.

    Of course both of them can throw spectacular tantrums, especially when they are forced to do things they don’t want to do or to go places they don’t like to go, but we’ve studied what triggers their meltdowns and avoid those situations whenever it is feasible.

    My son hates theatres, auditoriums, and similar buildings/rooms, so we just don’t take him to those kinds of places. But he loves to go shopping, so we can take him to stores as long as we plan to stay in them for at least an hour (he gets upset if he has to leave something he likes too soon).

    My daughter has a security object in the form of a specific stuffed animal, so we don’t leave home without it. We can take her to the supermarket, but never into a shoe store because she is obsessed with shoes and must be allowed to try on every pair in sight, whether they will fit her or not, or she will start throwing them at people. I learned this lesson the hard way – fortunately, no one was seriously injured.

    Because I accept the fact that autism is a permanent condition and that fighting it, rather than adapting to it, is a waste of time, energy and money, I can take all of this craziness without getting too stressed out.

    Because I have learned to accept my autistic children as they are (what other choice do I have?) I can enjoy, rather than worry about, their quirks and fixations.

  • Paul Awfit

    Your intent and bias are obvious.

    “a small chance for enviornmental” link

    Your need for actually reading and then understanding the relevant studies and issues concerning genetics apparent.

    Kids are being treated and many are improving.

  • http://www.landofthefreehomeofthebrave.org/wp/ Margaret Romao Toigo

    Lucas McCarty asks, “Why is it curebies go on about the lonliness and issues *speculated* to be caused by Autism but leave out that which is *definately* caused by the patently hostile enviroments they put around us?”

    Perhaps that is a question of blame and responsibility. It is easier to simply blame the autism than it is to take responsibility for how one treats autistic people.

    planet of the humans writes, “High Functioning Autism is a super-power, not a disability.”

    Then vsheehan asks, “What about the kids who do not have an amazing gift that could pay the rent?”

    Neurodiversity is not any sort of science, it is a political concept and movement, which aims to, among other intentions, work toward finding a place in society for all autistic people, even those who do not have amazing gifts like planet of the humans.

    Phil Schwarz writes, “What if, instead of ‘Autism Every Day’ and ‘Getting the Word Out,’ we had public relations collateral that eloquently illustrated the ‘make or break’ difference that the right kind of help, advocacy, and support can have, in the lives that autistic people lead?”

    Phil, I think you may have just given me the topic for my next article on autism. What a wonderful idea — that I wish I had thought of first!

    I think I got so into the politics of autism charities that I merely complained about them without offering any ideas for improvement, something which I have criticized others for doing.

    My penance for that offense will be to write an article suggesting ways that autism charities could actually be helpful to autistic people.

    Paul Awfit writes, “Your intent and bias are obvious.”

    Thank you. They were meant to be obvious.

  • http://www.kidstogether.org Colleen Tomko

    Well written! I think you have captured much of what happens in the world with this. As a mom, I create designs to promote acceptance and inclusion of people with disabilities.

  • http://www.wordsaremyworld.com Yvona Fast

    I have a problem with this (quote from article)
    “autistic people of nearly every apparent ability can lead satisfying lives; attend college, earn a living, get married, have children, etc — if they so choose.”

    That depends largely on whether these autistic people can find people who accept them… many can’t. I for one have not been able to maintain employment; i keep being told “you just don’t fit in here.” That is the problem – in order to fit a square peg into a round hole you have to enlarge the hole and society is not willing to enlarge enough to fit me in… especially in the employment sector.
    Yvona Fast
    Author, Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies, Jessica Kingsley Publishers, 2004
    North Country Kitchen: a weekly food and recipe column

  • http://www.loribakes.com Lori Bakes

    I read your article and though I do not agree of course it is an opinion just as I would like to state mine as well as my daughter’s experience.

    By all doctor’s, video and teacher’s accounts she was neurotypical until age 4-3/4 when she got her kindergarten shots all in one day. Then within months she was Dx’d with Major Depression at age 5, Asperger’s age 6, ADD at age 8 and ODD at age 9. She was on mutliple medications, had signs of liver damage, needed multpile modfications in school and classroom support to stay in public school, developed trichtotillomania (pulled her own hair out), obsessed over quad cylcles, had no friends, didn’t care anout how she looked, had trouble knowing the difference between hot and cold, was failing school and in all ways had trouble behaviorally, emotionally, academically and psychologically.

    We tried traditional help for her for 5 years only to see her digress. We did seek alternative therapies at age 10. Now at age 12 she is on the Honor Roll, got voted on the All Star Fast Pitch Team, plays fast pitch (first base or catcher (no easy task!) is making A’s and B’s without classroom supports, is on no psychiatric medications, has many, many friends and is well liked in school, gets invited to parties and sleepovers, doesn’t pull her hair (in fact has a beautiful head of curls!), shows no signs of liver damage and no longer qualifies for the diagnoses of Asperger’s, ODD, ADD or Major Depression. She tells me “My mind is not foggy anymore and I can think now. I am better” This is what she tells me and she asks if I can help the other ASD kids in her room to get better too.
    I promised her I would tell others of her recovery and accomplishments. She was not born Autistic therfore why would I just accept it as I would a genetic disability? I had a NT child for 5 years and then she was gone within a month. If I sat back and accepted her for the “way she was and the way she was meant to be” then I feel she would be an unemployed, violent, bald, unhappy person by the age of 20 because that was the directio she was going. She used to tell me she hated life, her brothers and sisters and me (she even was caught choking my son until he was blue). She now hugs me at least twice a day and plays wonderfully with her siblings. Go figure.

    I am not posting to change anyone’s opinion but rather to say we “curebies” are not always unhappier than the people that accept ASD for what it is because we are seeking the impossible looking for a cure for a “lifelong disability”. Some of us are pretty darn happy we didn’t listen to the naysayers and we are getting our kids back.

    P.S. About the ASD documentaries depicting life with Autism as being too melodramtic for effect and having the mothers cry. I could have been the “star” in those shows. I cried all the time (being slapped, spit on and struck probably qualified me) because life was hard and my daughter was many times mean and uncontrollable leading to a life without friends and family who didn’t want to be around us. So if others didn’t have it that rough or don’t have it that tough everyday consider yourself lucky that you aren’t the right “cast memeber” to play the part.

  • melvin polatnick

    Hi Margaret
    Your article made it very clear about the opposing forces involved in the Autism issue. But nobody wants to talk about the millions of adults who have survived after being labeled with a “character disorder” instead of being rightfully called “autistic”. They grow up and are let out in this cruel world to kill themselves or with luck find themselves a place in the sun. Are chidren the only autistic humans that deserve compassion?

  • Lucas McCarty

    I read your comment Lori and sympathise, but can’t at all understand why you choose apparently with no evidence to blame Autism/Aspergers for the difficulties your daughter had. I’d even call it irresponsible because it’s people like me, not you, that must put up with the consequences of thousands of acedotes like yours.

  • http://www.loribakes.com Lori Bakes

    Lucas-I did not choose to blame Autism/Aspergers for my daughters psychological difficulties. I do not have MD after my name nor am I qualified or permitted by law to treat patients or dispense medications. Remember I am only a “mom” as I was told by the 2 psychiatrists, 3 psychologists, 1 pediatrician, 1 family practice doctor, 7 teachers, 2 principals, 2 guidance counselors, 1 well known psychiatric hospital, multiple therapists and 1 developmental pediatrician that “blamed” autism for her decline in a 5 year period. She even participated in a psychiatric research study for several months and had no change in diagnosis. I claimed she was vaccine damaged and was literally laughed out of offices and told there was no such thing. I was told I must have missed the “signs”.

    So I feel sorry you feel ramifications from people like me but the authority of diagnosis does not lay in my hands alone. I believe it falls in the multitude of other professionals that treated her for Aspergers and claimed she would be disabled all of her life. I feel it was irresponsible for people to tell me to “accept her for who she is” and learn to love her with her differences for the sake of Autism.

  • Lucas McCarty

    I’m not sure exactly what it is you think I said. Medical professionals gave a diagnosis, this does not in anyway saturate information resources with factually-suspicious and demonising trivia about Autistics. It’s not Autism experts filling the internet, legal system and governence with this; it is you and your post repeated over thousands of times in some form or another everywhere all the time. In the Autistic community, there are middle-aged Autistics that hated themselves for decades because they believed based on such carpet-bombed falsehood that Autism is at the root of their every problem. With the prevalence of the internet that began to change as they realised there were others more or less able than them that thought different.

    It’s only when they actually speak to someone who has not had their life coated in putrid garbage about what being Autistic is, the fact that this applies to those any place on the spectrum shoots down the myth often spread by curbies that we only ‘like it’ because we’re ‘high-functioning'(these people haven’t even met us). Look at the UK National Autistic Society website and try to find a single sentence where they scare-monger and compare it to the fear factory organisations across the ocean.

  • A

    You made one sentence a paragraph long. That run-on was painful to try and read.

  • http://www.joyofautism.blogspot.com Estee Klar-Wolfond

    As a mother of an autistic child and founder/exec.director of The Autism Acceptance Project, I thank you for writing this. We have included a link in this month’s TAAProject newsletter.

  • melvin polatnick

    Hello again Margaret
    The best care that can be given to dysfunctional people–is a large enough federal check.That alone would make most of them functional enough to survive.The rest can choose group homes,and then given good care.Lets stop wasting money trying to make a square peg fit into a round hole.With a decent amount of federal dollars in their pockets they can enjoy life as well as Neuro-typical people.The billions of dollars spent on quack cures for the dysfunctional could better be used in the hands of those that need that money to survive.

  • http://king-gravewater.livejournal.com/profile Dean M

    At first I was a bit put off by the use of the word disability. But after reading the whole article, I am glad to see that there are autistic children out there with parents who want real answers rather than running to quack science. The URL I have supplied with this comment is a perfect example of what children raised by parents who want to turn them into something they are not end up like as adults, and should be read by every curebie who thinks they are helping their child by trying to make them what I refer to as (in my best Michael Ironside slur-voice) “normie”.

  • Noetic

    “The view that autism is not a disorder but simply a different way of being is presently a controversial idea that is strongly criticized by parents who hope to someday see their autistic children become neurotypical”

    I think that is perhaps a misperception – sure some parents have that (impossible) wish but many just want their kids to be able to look after themselves as much as possible, to learn how to cope with this world (the same as all parents *should* want their kids to be able to cope and understand) and live a happy, fulfilled life

  • Noetic

    Another thought – I think a lot of the “animosity” between parents and these advocates stems from the fact that they both seem to have massive assumptions over what the other side believes. Sure there are some on each side that do hold these extreme beliefs but the majority are nothing like that.

    For example, disliking the idea of a cure does NOT automatically mean that one is opposed to interventions that help a person cope better and understand better.

    Similarly, referring to autism as a disorder, or wishing that one’s child was not as severely autistic as he or she is, does not mean one looks down on autistic people or thinks they are not really human beings, or that one wishes the child had never been born.

    Living with an autistic child, especially when that child is clearly suffering a lot of distress, anger, anxiety and confusion, is not easy I am sure. Nor is living with autism yourself, but with the right support and interventions it is not the “prison” or “hell” some parents seem to believe it to be.

  • http://king-gravewater.livejournal.com/profile Dean M

    Noetic, the animosity is a direct result of groups like CAN or Autism Speaks refusing to let the voices of people who are autistic be heard. Half the time, when you try to point out to them that not only did we face almost the same difficulties as the children they are trying to pass off as crippled or broken, we generally had it much worse due to complete ignorance, they retreat into negationism.

    In other words, when the autistic try to speak for themselves and the message is not to the curebies’ liking, they attempt to negate us. I have even had one fool try to tell me I was not autistic because I could speak to them. Fortunately, I always carry around copies of certain written things by autism specialists so I can tell negationists to choke on them. But the point is that CAN and Autism Speaks are not giving anyone a voice or helping anyone. They are making life worse for not only everyone on the spectrum, but many families to boot.

  • http://king-gravewater.livejournal.com/profile Dean M

    Lori, if your daughter really is twelve years old, the likelihood that she was diagnosed with Asperger’s Syndrome, especially with such self-injurious behaviour, at age five is not just minimal. It is practically non-existent. It even causes me to wonder whether this daughter you claim is so happily normal now even exists.

    Assuming, however, that she does exist and is everything you say she is, she is just another decade or so away from turning around and asking you why you have lied about her. Real autism experts such as Professor Anthony Attwood or Doctor Isabelle Hénault have told the press on a number of occasions that the biggest issue they have with the autistic adults they often end up speaking with is anger over their parents’ rejection of the fundamental basics of their character. In other words, children like the one you describe grow up to be incredibly angry and aggressive about the people who were supposed to protect them as children not allowing them to be what they really are.

    My parents made that mistake, and are now paying a very heavy price not only monetarily but also in sheer emotional terms as I simply cannot and will not converse with them 95% of the time. My sister, who was vaccinated for polio and other such nasties at the exact same time as me and yet is not autistic in any sense (this is called a hint), is a complete stranger to me because nobody told them how to deal with an autistic son or brother. Please get your finger out of your ear and stop making the same mistakes my family made.

  • http://autisminnb.blogspot.com/ Harold L Doherty

    “but it never has to be anywhere near as awful as it is portrayed in these docu-melodramas.”

    Never is a very big word. The fact is many severely autistic children require treatment for serious self injury. Some will refuse to eat to the point that they risk self starvation. Others must be watched to ensure they do not wander into automobile traffic or otherwise go missing. These are some of the realities for some autisic children that you find offensive.

    You complain about autistic voices not being heard, an old refrain from the neurodiversity camp. In doing so you ignore the voices of autistic persons who in fact are heard such as those who actually join and participate in various autism organizations. In my home province of New Brunswick in Canada I served for several years on the Board of our provincial Autism Society which included an autistic person whose voice was heard and whose organizational abilities kept us on course for several years. This past year that gentleman gave evidence before the Canadian Senate committee exploring autism treatment funding issues, along with several other autistic persons including neurodiversity icon Michelle Dawson. As for the internet autistic voices are heard often. It is time to retire this old hostile myth that autistic voices are not heard isn’t it?

    It would also be helpful when discussing the politics of autism if you refrained from using insulting and offensive terms like “curebie”. I do not subscribe to the vaccine theory because it is unsupported by scientific evidence. But if a cure is found for autism I would seek it for my severely autistic son in a heartbeat. I would not seek to impose it on autistic persons and they are all free to retain their autistic traits. But for my son I would cure him instantly if it could be done.

    All in all there is nothing new in your commentary it is just more neurodiversity hostility disguised as analysis.

    Respectfully

    Conor’s Dad

  • http://king-gravewater.livejournal.com/profile Dean M

    Indeed, Harold, never is a very powerful and devastating word. Perhaps you should try using it on a teenaged autistic boy sometime in some contexts, such as telling him he will never be allowed to talk to members of the opposite sex, hold down a job, eat by his own means, and so forth. That is the kind of way “never” was used with me when I was 13 or so, and it is still a word, especially in its original Latin root, that produces some hideous reactions from me.

    Considering that it took more than a quarter of a decade for my autism to be diagnosed (damn those subtle things, huh?), and then every support service in the local area at the time basically dismissed or refused to listen to my complaints, I think perhaps you ought to ask yourself who is really believing a myth here. I have sat and listened to distraught parents who have been told that their autistic sons will just end up in jail anyway, as well as autistic children who, like myself in those days, can have lies made up about them of the most outrageous kind by the other children and instantly believed by the faculty. Do you have any idea what it is like to have people constantly lie about you, be physically punished for it, and have schoolteachers tell you “anyone would think you were hard done by”? I will give you a hint: I am not the only one who he has had to relocate in order to avoid retribution from. Considering that Autism Speaks and Cure Autism Now, two terrorist organisations that autistic children are kept up at night crying about, are even allowed to exist, perhaps you ought to consider that we are not the ones who started the war.

    Another thing many autistic individuals with traits in common with me find aggravating is being told how to speak. If you don’t like us calling you curebies, tough doo-doo. Considering that this is a variation of neurology that often results in people speaking the plain truth as opposed to dollying it all up in pretty-speak, you should be grateful that my particular catchphrase, hissing the word “normie” in my best Michael Ironside impersonation (think of how one would sound if they wished to rip the flesh off your body while you still live and you’re halfway there), has yet to catch on. What you seem to be missing is that for one thing, your son might not want or need a cure either. What if you cured him tomorrow, then found out the next week that it was not his autism but his environment that was the problem, as every autistic individual has been shouting at people like you from the get-go? You also seem to be missing the fact that if a “cure” were found, individual consent would be ignored. About the only thing the third X-Men film got right was the attempts to force their “cure” upon the mutants.

    I know I do not wish to be “cured” of the ability to write thousands of words in a day. But people like CAN show every indication that they do not care. You will be cured, damn you, if you like it or not. What if the first child you cure tells you “this is what I think of your cure” and blows his brains out on television, as I plan to in such an event? What then, Harold?

    Actually, Margaret’s commentary is very unique in that it tries to adopt the viewpoint that all people are in fact people. When I reflected on the inhuman level of abuse that I suffered until an overload caused me to start beating up the wrong teacher shortly after being diagnosed, I knew I could never take that view. As I said in one comment on a Youtube video, you try to cure me of my autism and I will kill you. I want my autism, warts and all, complete with the massive slash marks in my forearms that resulted from idiots like you not listening.

    Margaret, if I may offer a personal perspective upon these claims of unnecessary hostility on the part of the autistic, I think the phrase “do unto others as they have already done unto you” says it all.

  • Noetic

    Dean M. “Noetic, the animosity is a direct result of groups like CAN or Autism Speaks refusing to let the voices of people who are autistic be heard. Half the time, when you try to point out to them that not only did we face almost the same difficulties as the children they are trying to pass off as crippled or broken, we generally had it much worse due to complete ignorance, they retreat into negationism.”

    That’s what I mean though – not all *parents* are like this, yet you generalise that attitude to the whole group. I have yet to actually read a statement by such a group (as opposed to certain individual bloggers who hate autism) that actually refers to autistics as crippled or broken.

    Exaggerations and generalisations don’t do the credibility of autism advocacy any good – in fact they put them on the same level as many believers in quack science. (Both twist and exaggerate the truth to “prove” their points – I may AGREE more with your point but I still do not see the need for such pointless and hostile overgeneralisations)

  • http://king-gravewater.livejournal.com/profile Dean M

    You ever hear that saying “when you side with someone, you inherit their enemies”? Well, the deafening silence of parents or educators who do not support eugenists like CAN et al makes those people stronger, and is effectively siding with them. If you seriously wish there were no parent groups trying to make us out to be cripples, then I suggest you have a good look at all the curebie videos on YouTube for starters. One second they are telling us our brains have been fried by mercury, the next they are debating us so poorly its even money as to whether they graduated high school. In effect, they try to have it both ways, and its because people like you give them that, they can keep doing this.

    The scary thing is that when I am talking about the abuse and misery inflicted upon autistic children during the years I was an autistic child, I am doing the exact opposite of exaggerating. If anything, in fact, I am so severely understating things its a wonder I do not feel compelled to punch myself. And the same is true for the entire advocacy movement. If we were to take the same approach as the curebies and highlight every little negative of normalism, your television would be flooded daily with the details of child abusers being hauled into court and confessing to crimes the likes of which we thought we’d never hear about again after Nuremberg. If you want to be taken seriously as a moderator, then you had best stop trying to negate the autistic and actually listen. You want us to be warm and cuddly while morons preach genocide in a manner that is patently ridiculous yet gets accepted and protected in mainstream society? Does that not strike you as just a tad off?

  • http://www.autismcrisis.blogspot.com/ Michelle Dawson

    It took more than two years of hard work (2003 to 2005, when I was finally allowed to testify in the previous set of hearings) to have any autistics at all allowed to testify about autism issues in front of that Senate Committee (the one referred to by Mr Doherty). The resistance against this was extreme, and it went on for a long time, and some of it is on the record.

    The need to include autistics in further hearings (which turned out to be the autism hearings Mr Doherty refers to) was eventually stated in the Committee’s previous report. One of my recommendations was that the Committee apologize for their actions, and they came pretty close in that previous report. The only person arguing the inclusion of autistics who is quoted in that previous report is me, though Janet Norman-Bain submitted an outstanding brief asking the Committee to consult with autistics.

    I did not see FEAT, ASC (or its provincial members), et al. arguing for the inclusion of autistics in that previous set of hearings, though they had ample opportunity–and none chose an autistic to represent them. Indeed, in those previous hearings, ASC testified that autism is worse than cancer, because it does not kill us, and we continue horrifingly to live–this from a parent whose autistic son is brilliant and far more accomplished than I.

    In the more recent set of hearings, the autism treatment funding hearings, autistics were deliberately banned from the major hearing in the series, the crucial round table meeting on autism research.

    A list of events and/or organizations in Canada which have banned and/or continue to ban autistics in one way or another: Canadian Institutes of Health Research, Canadian Autism Intevention Research Network (banned from their organization and their conferences), Autism Society Canada, NAAR/Autism Speaks, Office for Disability Issues, Health Canada, Canadian Autism Research Workshop, etc.

    The Autism Research Training program (which encompasses many Canadian autism research groups) did not involve any autistics at all until someone (not an autism society, FEAT group, or Mr Doherty) made some noise, then a few were included, then a few more. And ACT BC refused to include autistics. They had a lot of excuses. Now they have a total of one. That’s better than it was before, but surely they can do better than that. ASBC still refuses to include autistics, though one ASBC board member has (he has written) tried and failed to have autistics included. Ontario’s expert reference group on autism deliberately excludes autistics, and I couldn’t do anything about this (I tried). And so on.

    Then there was Auton, where autistics were excluded by both sides right up to the Supreme Court of Canada, and then both sides (parents and governments) opposed the participation of even one autistic. Now, Mr Doherty will say this never happened, but legal cases are pretty well documented. In fact, I have many relevant documents on my website, just like I’ve posted that previous Senate brief and many other efforts to have autistics included (in the CARW, in ASC, etc).

    It took years (starting well before Mr Doherty’s son was diagnosed) to force ASC to include any autistics at all (even as ASC has done, in a hand-picked supervised powerless ghetto, and as a tiny minority–1 of 15–on the board), and this too was a lot of (documented) work involving several autistics and our allies.

    But bully for Mr Doherty for emitting another unproductive misrepresentation of the very available facts. I’m again reminded of his anti-scientific promotion of the “autism epidemic”, which has the effect of denying the lives and existence of autistics.

  • http://autisminnb.blogspot.com/ Harold L Doherty

    As you know Ms. Dawson you were not the ONLY autistic person to address the Senate Committee. One of the other autistic persons to speak to the Committee was a gentleman named Jason Oldford.

    Mr. Oldford was active for several years on the Board of the Autism Society New Brunswick. He was never excluded because he was autistic (Asperger’s). Quite the contrary he shared his insights with the non-autistic parents on the Board. He also contributed his very considerable organizational abilities to our efforts. But Mr. Oldford did not simply assume that his voice would be rejected he came and spoke to the organization, was welcomed for his contribution, and became, as I said a very important contributor.

  • http://autisminnb.blogspot.com/ Harold L Doherty

    Dean M

    You only discredit yourself by using insults to describe organizations of people trying to help their own children.

    I am not trying to cure YOU Dean. I doubt anyone else is either. Those of us who are parents, seeking to cure our own children, have no desire to cure you. Nor should you have any interest in trying to prevent us from curing our children. Put bluntly it is none of your business. You do not have my son’s interest at heart.

    Despite what many Neurodiversity ideologues keep saying not all autistic persons write internet essays and appear before courts and Senate Committees. Whether you like it or not there are autistic persons with almost non existent communication abilities. There are also some like my son who hurts himself when he breaks windows with his hand or wanders into traffic. I have worked to ensure that an agency in NB continues to provide tertiary care services to autistic children. They work with some of the most challenging problems that SOME autistic children present including such problems as refusing to eat and literally starving themselver or physically injuring themselves.

    You and Ms. Dawson are free to live your live without being cured by anyone. Don’t presume to say that you know what is best for other people’s children – you don’t.

  • http://king-gravewater.livejournal.com/profile Dean M

    Harold, don’t bother. You keep coming here and commenting in search of validation of your negation of the viewpoint of real people on the spectrum such as myself. You will not find it. I still have to wonder exactly what it is that terrifies you so much about the idea of autistic people being allowed to speak for themselves. We tell you our whole world is black because of people like CAN, and you want to tell us it is pink. Between hearing that people actually testified that autism is worse than cancer when I have/had both and listening to you try to tell me nobody wants to force me to be something I am not, let’s just say people who know me in person are not asking me to tone it down. They are wishing people like you would stop throwing gasoline on the fire.

    As I have said repeatedly here and elsewhere, trying to tell me that a cure would not be forced on me if one were to come into existence is like trying to tell Harpo Marx that the Nuremberg Laws really aren’t anything to worry about. You keep rabbiting on about what you want for your son, but what are you going to say when your son is an adult and tells you he wants something else entirely? As I have already said, Professor Attwood’s biggest pervasive theme noticed among today’s autistic adults is anger and frustration at parents who refuse to accept that they are not normies. In another ten to twenty years time, your son is going to find out exactly what you have been wishing upon him and be very upset with you. Are you willing to come back and post apologies to everyone on the spectrum for it even though it might end up being too late? I doubt it.

    And despite what curebies keep trying to tell us, autism is not, never has been, and never will be as utterly disabling as you want us all to believe. Even the lowest-functioning of children change radically when they hit that weird and wonderful climax of change we call adulthood, and there are people who actually bother to sit down and interface with the autistic who are finding there is getting to be progressively less room for your conclusions. It reminds me of an experiment I heard about in the news in which scientists were attempting to establish communication with dolphins. They said they wanted to hear what the dolphins had on their minds, even if it was “leave me alone”. It is patently obvious to me, and to many people reading this article, that you have no such regard for your own son. At some point he is going to ask you to stop curing him, and I do not doubt for a second that your response will drive a wedge between you because of your ignorance of the actual situation. The ability to write, direct, program, or paint is only beyond an autistic individual when you purposefully make it that way instead of helping.

    You see, Harold, you probably will not get this, but after reading your negationist dribble, I feel far more qualified to speak up for children like yours than I feel you are. Unlike you, I have not forgotten what being a child is like, and I will certainly never forget what being an autistic child was like. You are making the exact same mistakes adults around me made when I was a boy, and it is honestly enough to make me wish I could have a film crew follow you 24/7 for when you start “enjoying” the results.

  • http://www.autismcrisis.blogspot.com/ Michelle Dawson

    The report resulting from the previous set of Senate Committee hearings I refer to is here. Maybe Mr Doherty can show me where Jason Oldford is involved (witnesses listed at the end). Mr Doherty might want to read the autism section.

    As I wrote in my previous message, in the current set of hearings, autistics were deliberately banned from the most important meeting of the series.

    Every other example I gave of autistics being banned can be verified. Often, there were many witnesses, as in the CARW, from which Mr Oldford was banned at a time when he was “active on the board” at Autism Society New Brunswick (an ASC member). This means that autistics were banned from the CARW with Mr Oldford’s apparent approval. That is, if Mr Oldford genuinely was in a decision-making position, he was in on ASNB’s ethusiastic approval of not only himself being banned, but of all autistics being banned.

    It’s odd that the Canadian gov’t responded to my concerns not by telling me that ASC and its members fully welcome autistics in their governance, but by writing:

    “ASC is governed by parents and caregivers of people with autism as most individuals with Autism Spectrum Disorder (ASD) are either minors or are people who, due to their disability, are unable to speak for themselves, nor function within the social structure of a typical organization.”

    The director general who wrote this in a letter to me (on behalf of the relevant federal minister) later told me that this information came from ASC.

  • http://www.autismcrisis.blogspot.com/ Michelle Dawson

    Mr Doherty wrote:

    “Despite what many Neurodiversity ideologues keep saying not all autistic persons write internet essays and appear before courts and Senate Committees.”

    Well, I don’t write about neurodiversity, but I see it a lot. I’ve seen a lot of different human brains, their structure and function. Mr Doherty calls this human diversity an ideology, which presumably would disappear if only those misguided and malicious “neurodiversity ideologues” would go away. I would not agree with Mr Doherty in this regard.

    I would also like to know who has said that “all autistic persons write internet essays and appear before courts and Senate Committees” of for that matter, that all non-autistics do this. And how does this have anything to do with what basic human rights a person (autistic or non-autistic) should have, or the standards of science, ethics and advocacy they deserve. Not everyone (self included) can do what Mr Doherty’s totally cool autistic son can do without being taught. Does this mean Mr Doherty’s son should be disregarded, as “too high functioning”–because he has excellent specific skills–to have anything to do with “autism reality”?

    Mr Doherty wrote:

    “You and Ms. Dawson are free to live your live without being cured by anyone.”

    Well, no. I do not want to break this to Mr Doherty, but autistics live the consequences of the public discourse about autism. We live the consequences of “autism advocacy”. We live the consequences of motions, laws, legal and political actions. We also live the consequences of defamation, of accusations from eminent “autism advocates” that we are dangerous frauds and criminals. We also might care about what happens to other people. Yes, I know that is not allowed in Mr Doherty’s world. But I’m afraid I disagree with Mr Doherty here also.

    Mr Doherty wrote,

    “Don’t presume to say that you know what is best for other people’s children – you don’t.”

    I write formally and informally in the areas of science and ethics (both science and ethics are recognized disciplines, like law), as well as about the science and ethics of “autism advocacy”. This work can and should be criticized on its merits, but so far Mr Doherty has not chosen to do this. I’m also aware that Mr Doherty does not accept that autistics deserve recognized standards of science, ethics, and advocacy. And while I’m afraid I disagree with Mr Doherty about this, he is of course free to ignore me. Nobody is trying to cure Mr Doherty.

  • http://king-gravewater.livejournal.com/profile Dean M

    Why bother, Michelle? Curebies like this want to urinate on us and tell us it is raining, then go crying to others when we react in a hostile fashion. The Nazis did the exact same kind of thing in the 1930s, selling their inhuman persecutions of dissenters and fringe groups as a response to some perceived threat. That is the real reason CAN will not allow autistic adults to speak for themselves: seeing what real autistic people have to say ruins the credibility of their “plague of the twenty-first century” message.

    If ever there were people who exemplified the reason why the autistic are imagining breaking away to form a society of their own…

  • Rossco

    The problem that I see is that we all use abstract concepts to define a position that my not apply to what another person or group believes.
    Examples of this are: what is neglect, when is acceptance ok, what ought to be accepted, what is “natural” development as opposed to enhanced development, what is good parenting.
    To confuse issues, putting these concepts into working situations is more problematic. I want the best for my autistic child. I do want to see him happy and secure in life. I do want to put in place strategies to assist him in this way.
    At what point do I become interferring or neglectful? It is a perspective. I think I make pretty good choices and I can live with them
    I try not to be judgemental about this process with others.

    One thing I believe though is that in these tentative stages of increasing public awareness, we do have to be vigilant and all oppose ALL of those that will demonise or dehumanise autistics. The endorsement or ignoring of such acts will only serve to harm my child (and all other autistic children) in future years because the public will base their views on autism based on what is filtered to them.
    If a psychotic autistic person commits murder, why did they do it. Is it because they are autistic (neurologically different) or because they are psychotic (mentally ill)? If you support media who persue it is because of their autism (perhaps in the mistaken believe that any identiofication of autism is good and could be used constructively) you have helped in the demonisation of people like myself and my boy.
    If you attach yourself (even loosely) to any group that supports JRC, you are supporting a centre that dehumanises autistics and any positive publicity that supports their practices.
    I am 36. I was lucky in many ways that autism diagnosis wasn’t around when I was longer. I was 30 until my dianosis was corrected from retardation to HFA. My son though I worry about.
    He will be growing up in a time where the public will “make up their minds” on the autism debate. Menaces, unpredictable psychos, retards, animals…or perhaps people who struggle to meet challenges and changes but have potential to be a success in their own rights, worthy of acceptance and understanding in society….up to all of us.
    We just have to be careful and caring. I am.

  • http://autism-prevention.blogspot.com/ Les

    It seems that not many people know that early childhood schizophrenia as a diagnosis has been removed from the DSM IV and children with this disorder are now called autistics. I believe that psychiatrists and pharmaceuticals leaders, and changed the name of childhood schizophrenia to autism to create confusion. With the tremendous increase in the average paternal age since 1980 childhood schizophrenia was expected to increase significantly. So that is what we see today. The austism charities are run by and for people who know all about this and exist to raise money for useless scientific research that lines the pockets of researchers, research institutions, pharmaceutical companies and psychiatrists etc. It is a scam. The risk factors of advancing paternal age 33 and over, a family history of autoimmune disorders, an older maternal grandfather at the mother’s birth are not announced and genes are collected only for the benefit of genetic research companies.

    People need to wake up and those who are young cryobank their sperm in their mid 20s. Older men past the age of 33 should not father babies unless they have a supreme family history and should adopt instead.

    Paternal age at conception is a robust risk factor for schizophrenia. Possible mechanisms include de novo point mutations or defective epigenetic regulation of paternal genes. The predisposing genetic events appear to occur probabilistically (stochastically) in proportion to advancing paternal age, but might also be induced by toxic exposures, nutritional deficiencies, suboptimal DNA repair enzymes, or other factors that influence the fidelity of genetic information in the constantly replicating male germ line. We propose that de novo genetic alterations in the paternal germ line cause an independent and common variant of schizophrenia.

    Seminal findings
    We initially examined the relationship between paternal age and the risk for schizophrenia because it is well established that paternal age is the major source of de novo mutations in the human population, and most schizophrenia cases have no family history of psychosis. In 2001, we demonstrated a monotonic increase in the risk of schizophrenia as paternal age advanced in the rich database of the Jerusalem Perinatal Cohort. Compared with the offspring of fathers aged 20-24 years, in well-controlled analyses, each decade of paternal age multiplied the risk for schizophrenia by 1.4 (95 percent confidence interval: 1.2-1.7), so that the relative risk (RR) for offspring of fathers aged 45+ was 3.0 (1.6-5.5), with 1/46 of these offspring developing schizophrenia. There were no comparable maternal age effects (Malaspina et al., 2001).

    “It makes sense that the mutations causing these diseases would occur more frequently in older men, and indeed that’s what we saw for Apert syndrome,” says Ethylin Jabs, M.D., director of the Center for Craniofacial Development and Disorders at Johns Hopkins. Science Daily

    Importantly, disorders linked to advancing paternal age begin to increase rapidly at about the same time as maternal risks increase — age 33 to 35. Until now, the only evidence for paternal age effects has come from determining how many children with these diseases are born to fathers of various ages.

  • Zaecus

    “Older men past the age of 33 should not father babies unless they have a supreme family history”

    I have a supreme family history; a wide range of autistic expression from all over the spectrum on both sides of the family.

    I intend to have multiple children and to encourage them to do the same.

    Hopefully, we’ll outnumber those like you eventually, and those of us who think diversity is a good thing and differences add value can get down to sharing the world as equals.

  • Lucas McCarty

    I’ll wait til 33 to get married and like Zaecus above, try to father as many children as possible. Failing that, I become the world’s most prolific sperm donor. Or I could do both. Sounds reasonable.

  • http://king-gravewater.livejournal.com/profile Dean M

    It must be really hard work being that ignorant, Les.

    For one thing, autism and schizophrenia are about as alike as chalk and cheese. Schizophrenia has an onset that generally occurs in the late teens, although obviously the mental illnesses that autism is not do not read textbooks. What the curebie quacks consistently miss when trying to pretend that autism somehow reduces one’s quality of life (as opposed to abuse from parents, teachers, doctors, and so on) is that autism is present from birth, much like dark skin or green eyes.

    I used to wonder why curebies are so afraid of the proliferation of autistic adults who have been diagnosed only very recently. Then it hit me like a bullet. They fear us because our existence, the fact that we have lived to adulthood in spite of terrible abuse and denial of one of our most basic human rights, demonstrates that autism is not as crippling or disabling as they would like their sponsors to believe. If anything, to be perfectly frank, it demonstrates that we are far stronger, far more resilient, dare I even say far more hardcore, than they will ever be. What kind of people would you want running the world of the future? People who have demonstrated they can take more abuse than most people can stand? Or people who cry “waaaah pity me me me, my child is *different*?”. Hell, I am even acquainted with a veteran who has shrapnel in his face, and he happens to be autistic, too.

    (By the way, I hope someone working for the Canadian government can read this, because I used to think of Canada as a progressive, enlightened nation. After hearing about how it treats its autistic citizens, I fear it is in danger of becoming the next Nazi Germany.)

    The renaming argument is really incredibly pathetic when you think about it. It reminds me of the spurious claim one moron I will not glorify by mentioning here made that autism did not exist before 1947 because that is when Leo Kanner first wrote of it. Antoine Lavoisier identified silicon first in 1787. Does that mean silicon, the second most abundant element on our planet, did not exist before 1787? Names might have power, but only so much of it.

  • Nikad

    I assume most of the above posters live in ¨First World¨ countries. I live in Argentina and I´m the mother of a 12 yo aspie. I don´t think my son is disabled ( although I got a disability certificate for him just to be able to get economical help for therapists, schooling, etc ).

    Since this certificate is renewable, I will not renew it after he turns 18. I do not think he is disabled, but the system is perverse and makes it economically difficult to insert an aspie kid in schools, etc.

    If his brain was damaged by a vaccine,etc and there is a cure, I will do what it takes to provide it to him since it is my responsability as a parent to take care of both his mental and physical health, however if his AS is a part of his personality I will not ever want to change him!

    In my opinion, wether a person has a mild or severe disablity and you treat them as disabled, they will grow up weak and fearful. Now the question we should ask ourselves is: What is in reality a disability? Some of the physical ones are obvious, but what about for example the now so fashionable Anxiety Disorder? or Atention Deficit Disorder, Clinical depression, ocd, bipolar disorder, autism, AS. How disabling is depression or anxiety? I have met people who couldn´t keep a job becasue of this, and I have NEVER heard any of them were excluded from panels, associations, politics, etc and treated like alien!

    If the fact that somebody flips his arms, or has a weird tone when talking, or is very straightforward is a VALID reason to exclude his thoughts, feelings, opinions, etc then we as NTs deserve to be insulted and treated like hipocrits!

    I have met MANY NTs that are not autistic and do not like to interact with other people, they only do it if they have to, so what is the difference? If you choose not to be social then it is fine, now if you have trouble socializing then you are a disease???

    What about all the scientific research that concludes that people with autism develop as they grow up? Is it a lie? How do you measure development? Why are so many organizations stigmatizing people that have been labelled?

    I was happy to know what was different with my son, we both felt relieved, we discovered together what was the way to go, how to understand each other, etc, now why am I getting the feeling that the diagnosis is in fact a CURSE?

    Also, each an every person is different, so why put everobody in the same bag? To me, any organization that advocates for the rights of people with autism and has just NTs governing it, is a BIG LIE.

    Maybe the intentions were good, but somehow you missed the point… Now who dares to tell so many adults that are being diagnosed that in fact they cannot think or do anything for themselves? That they cannot raise kids or have families, jobs and carrers when they have already proved they CAN DO IT?

    nikad
    ( Veronica S. )

  • http://rainmanlite.wordpress.com James

    I’m with Dean, at least up to a point. I have Asperger’s Syndrome, was first diagnosed at age seven and recently had my diagnosis confirmed with a battery of tests arranged by the university where I am currently taking a Creative Writing course; whether my AS and a love of reading and writing (which I’m told I’m good enough at to make a fair bit of money out of it) are causally related is a matter for conjecture, but it certainly doesn’t hurt.

    Now, can someone please define the term ‘cure’ for me? If it means giving people with autistic spectrum disorders the means to graduate from high school and eventually college if they so desire, live independently and become productive members of society, Dean seems to have cured himself. I underwent successful treatment that took the form of speech and occupational therapy by an excellent Special Educational Needs programme throughout my education and the less structured but equally efficient tactics of a patient and understanding mother; I even got over my problem with maintaining eye contact, though I’ve never completely mastered my stammer. I am forgetful, socially awkward (though I’m getting better at this) and generally something of a geek, but there are worse things for one’s son to grow into.

    But if could give the parent of a child with autism only one piece of advice, it would be this: You must deal with your child as they are, not how you would wish them to be. They’ll never really be ‘normal’, whatever the hell that is, so all you can do is help them learn to work with ans compensate for it, and even make their autism work to their advantage.

  • Ms. Missy Link

    Not tring to convert anyone but here is a story of what can go wrong in the journey to med the symtoms of autism.

  • earthmonkey

    Sometimes people tell me I’m too high-functioning to speak on autistic rights because I am diagnosed Asperger’s and so didn’t have a speech dely. They see my national writing award, my grasp of calculus by age 10 and of abstract algebra, number theory, and topology by age 16 (self-taught entirely from books, as my parents can barely do basic algebra), and people tell me I have no right to speak for so-called lower functioning people.

    Let me describe my experience with someone I know who does not match this profile of a gifted autistic. When she was in fifth grade, she could not figure out how to ask her teacher for a pencil when hers was lost. She spent her time in classrooms staring off into space, participating in the schoolwork maybe 10% of the time if that, from elementary through eighth grade. Teachers would approach her, wave hands in front of her eyes, call her name, even shout it, would threaten disciplinary action, but she still would not respond to them. She always ate alone in the cafeteria, staring off into space as the kids around her made fun of her as she rocked back and forth and never said a word the whole day through. At home, her mother was at a loss. She had to plead with her daughter for hours on end to do her homework, but she would spend those hours creating absolute havoc in the house, always fighting with her siblings, refusing to be touched, self-injuring by hitting her head. She wasn’t fully toilet trained until age 11.

    This girl was me. And while most autistics aren’t math prodigies (how many non-autistics are math prodigies?), that doesn’t mean there isn’t chance for significant growth and potential. While it is impossible to make a post-mortem (did I spell correctly) diagnosis, you might have read about speculation that Einstein had Asperger’s. But Einstein didn’t speak until he was four. The diagnosis, if on the autism spectrum, would have been Kanner’s “classic” autism.

    I have some friends now, but I didn’t until I started attending this school, which is an art school for high-school aged students, and the students are very accepting of other people’s differences, which is the only reason I believe that my stimming, perseverating, meltdowny ways are accepted as another part of who I am, and I am happy for one of the few times in my life.

    When it is a day that talking hurts, I write down my messages of communication to my friends via an alphasmart the school provided me. It is far quicker than writing by hand, which takes me forever (my elementary school teachers loved my handwriting, but it took me forever to write and left my hands very sore to write even one simple sentence (such as “The dog chased the cat.”)) While some of my friends like to hug me at times, they know to ask permission. One thing about physical contact is that even when I’d be okay with it, if I am not aware ahead of time that it is going to occur, then it will leave me jumping away, shouting.

    One thing that should be noted is that I never underwent any sort of therapy, either by drugs or counseling. What I see is that if this sort of natural development can occur for a teenager autistic is that for people who would need more help, I see a positive program of therapy do wonders for improving the adaptive abilities of children (did I mention that whenever my mother moved the furniture around for no reason other than to change how things looked that I would have tantrums? In retrospect, we should have combined a) her moving the furniture around less often, as in only when necessary, and b) teaching me that it’s not the end of the world when things change, possibly by drawing a rudimentary map of what it looked like before and what it’s going to look like after).

    While I am staunchly opposed to the finding of a “cure,” I write this understanding that 1) very few autistics are child prodigies (just as very few neurotypicals are), 2) many therapies CAN help people adapt to the neurotypical world and still retain their autistic identity (i.e. you can teach a child to speak – or otherwise communicate – and he or she is still just as autistic) 3) that chelation and related techniques of trying to help children CAN kill and cause other side effects (while there aren’t many deaths in association with chelation – I only remember reading about one or two – autism is not life-threatening, and quality of life can be greatly improved for autistics, even those without speech and those who are considered mentally retarded, by therapy such as occupational therapy and another I’m forgetting the name of – it’s not ABA, that’s more the stimulus-response, stimulus-response type of stuff I have seen damage the functionality and self-image of many autistics (often, so much effort is spent trying to train neurotypical behaviors that the child has difficulty accomodating his or her autistic behaviors to the outside world, and the study which actually compared the ABA-trained kids to a control group showed no statistically meaningful difference between the two groups – and I understand statistics, I took a statistics course at college in the summer between tenth and eleventh grade, one year ago.

    I’ve been depressed very often since I was young, due to the awful way that my sister and my peers abused me verbally and physically. When I was in seventh grade I was assaulted each day, knocked unconscious more than a few times, sustained injuries that landed me in an ambulance during the school day, which we were completely unable to afford, and when I reported all this, my counselor told me that I had to expect such treatment since I didn’t look or act “normal” (referring to my rocking, the fact that I spent all day writing mathematical proofs instead of doing worksheets that simply reiterated the lecture – I understand if it’s useful for other students who need more help to remember to do it, but why penalize me when I ace the tests without even showing up for class? – and how I stayed at the library instead of trying to socialize with my peers, 90% of whom either actively assaulted me or stood back and watched with grins) and this was how she justified not punishing them. i told her I didn’t ask to be well-liked, I didn’t even ask her to prevent the kids from making fun of me, which would be impossible to control. I just asked that she uphold her legal duty to provide a safe learning environment, and when i finally was pressing to get the police involved after she refused to act on an attempted rape, she managed to convince me that it would be pointless to put me and my family through all that, especially since no one would believe an autistic girl crying rape anyway. What did I know? This was exactly the same runaround I’d faced ever since I’d been going to school when the boys would attack me in kindergarten, why should I think the police and the law would be any different? I stayed at that school a whole year after that, and while I managed (just barely, as I had to appeal to the same counselor) to get transferred out of a science class with the boy who’d done all that to me just months earlier before the summer break, I couldn’t get out of history with him, and history class was the class where they show the sexual harrassment videos. I wanted to die, and he kept giving me these dirty looks, just like the ones he gave when the year before he’d said: “Justice has been served – to US!”

    While this may seem like an extreme case, it is all too common. It may be more thickly veiled than “well, you’re different, so you’re not entitled to safety”, It happens in many different ways. Sometimes, the counselor says, “the kid is exaggerating things” or “Being bullied helps build character” – maybe the person who says the latter is thinking back to being teased, and most certainly not to being beaten daily, usually so unfairly as five against one, certainly not to being unable to go out in the city without running into some of those bullies, or even without leaving home, some of the bullied who lived in the same mobile home complex vandalized the family car.

    Oh, and another comment: the reason autism was frequently diagnosed as childhood schizophrenia in this century is that some of the earlier schizophrenia (formerly known as dementia praecox, or “precocious dementia”, as it was viewed as the dementia that occurs in old age, except that it occured at a younger age, usually between 15 – 25 for maled but with somewhat later average onset for females) studies used the word autism (which, of course, is from latin) to describe specific negative symptoms of schizophrenia. Later, when Kanner did his studies of “classic” autism, he applied the same word, autism, but under a different context. Later on, in this century, this caused confusion between autism and schizophrenia. Since schizophrenia is extremely rarely occuring in childhood, and since autism is always in childhood (among the other stages of life, such as adolescence and adulthood), then this in combination with the confusion of terminology led to the inaccurate diagnosis of childhood schizophrenia. It is not that children with childhood schizophrenia are now called autistics instead (there are in fact children who are schizophrenic, and this is early-onset schizophrenia), but it is that autistics were mislabeled as having childhood schizophrenia and now are recognized as being autistic.

    Please, Les, consult psychology (or history thereof) texts prior to claiming that autism really is childhood schizophrenia renamed. Perhaps you should learn from us autistics and perseverate before you (try to) elucidate. (I did.)

  • http://none NBBFan1

    Autism is not alway’s severe; the different types of autism – moderate autism/PDD-NOS (Miled), Severe Autism (Classic Autism), and Aspergers Syndrome.

    Do to the scientific studies 30-years-ago, some people still think it’s life long.

    Through “Early Childhood Intervention” programs kids could gain self-care and social skills where as with severe autism that is unlikely.

    there’s multiple of them such as –
    Applied Behavior Analysis (ABA), Sunshine and more.

    But they will alway’s be on a autistic spectrum.
    Most of which get Aspergers Syndrome (AS) (High Functioning Autism).

  • Supefreak

    It should be noted that even though there is substantial proven evidence of special diets ,vitamins, as as as treatments for gastrointestinal treatments she believes in absolutely none of it.
    She is laughed at often on the autism boards for her stubborn view that autism SHOULD NOT BE TREATED and she should be placed in jail for neglecting her children for the same. There are proven remedies for even complete recovery of autism yet she will not even discuss or want to believe thousands have recovered through other means. Traditional medicine DOES NOT have any treatment for autism even though even ABA and speech therapy are proven. She even opposes those. In other words she would rather her children and yours to never reach their potential.
    Go over the autismspeaks and look at her post. Look at how much time she spends arguing EVERYONE on any treastment for autism.
    Very sad person.

  • http://autismspeaksnetwork.ning.com/profile/MargaretRomaoToigo Margaret Romao Toigo

    Supefreak, I have never asserted that autism should not be treated, only that it should not be treated with quackery.

    There really is no such thing as “alternative medicine” — that’s just an euphemism for quackery.

  • Evan

    i have autism and i overcame my autism but not completely and drinking and smoking could cause me to loose my progress