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Autistic Pride Day: A Desirable World

6 Jun

One of the saddest, most chilling aspects of reading the words of those who claim autism is solely mercury poisoning is the cheapening of the word ‘autistic’ to reflect illness, negativity, inhuman, uncaring, amorality. To those who would rob my daughter of the identity she has I would like to ask: why? So your children may be ill. Your children may have been misdiagnosed as autistic and your children may be in pain.

None of that gives you the right to denigrate the person that my daughter and thousands of other autistics is/are. Imagine the public outcry if we suddenly decided that a dark skin was a ‘treatable illness’ and that we could ‘reclaim our dark-skinned children’. If your children had dark skin as, for example, a result of being burnt in a fire, then no-one would deny them medical treatment. But would it be right to categorise _all_ dark skinned children in this way? Of course not.

In the article I want to recommend people read, Amanda Baggs details the sort of world she wished she lived in. It sounds like a great place to me. However,

Currently, I can find exactly one printed book which tells me what I know to be true — it is okay, even beautiful, to be autistic. The book is Through the Eyes of Aliens, by Jasmine Lee O’Neill. I carry a copy of this book everywhere, and even sleep with a copy of it. It is the only concrete and lasting object I own that tells me, directly, “It is okay to be you.” Someday, I hope there will be more.

Amanda writes eloquently about dignity and respect. Dignity for the autistic to be autistic without the impediment of a society trying to ‘cure’ him or her and respect for the genuine nature of autism – not as the side effect of a toxic metal overdose but as the unique difference that it represents. Please read Amanda’s piece and remember that it is written by a woman once regarded as ‘low functioning’. If Amanda is low functioning then I can only hope that my daughter stays low functioning for the rest of her life.

Autistic Pride Day: Buffy The Vampire Slayer

4 Jun

Its vitally important when you’re the parent of an autistic child that you utilise methods of learning that are serious and learned.

Megan runs over to me holding up one of what I like to refer to as ‘interactive learning simulations’ and what the rest of the world likes to refer to as ‘XBox games’. This particular XBox game revolves around the empowerment of females and how difference is sometimes a good thing. Oh yeah, and vampires.

“Can you start the dishes?” Calls down my wife from upstairs where she cleaning the bathroom.

“Love to babe but Megan’s brought one of her interactive learning simulations over for me to play.”

“You mean she wants you to play on Buffy the Vampire Slayer.”

“Well, yeah.”

Silence. I take that as a good sign and plug Buffy in (please ignore the innuendo in that). She starts up like the dependable game, er I mean, learning environment, she is and off we go.

Megan only really likes me to interact with (OK, OK, ‘play with’) one bit of the game and thats the first 3 levels. For those of you familiar with Buffy she quips and wisecracks over the second seasons environment. For those of you unfamiliar with the Buffysphere Megan lets me complete the training level and the first 2 real levels and then I must restart.

By my own reckoning I’ve done these three levels approaching 700 times. It would not be egotistical to describe myself as the Yoda of the first three levels of this game. Thats right, not the Obi Wan, not the Skywalker but the frigging Yoda. As one of my son’s favourite TV wrestlers loves to opine – I’m. That. Damn. Good.

The gaming element went out of it months ago – what I do now is time myself. I’m embarrassingly pleased with myself if I beat my best time. Or I go through only taking the Health I started with, or only killing the vamps with my bare hands (tricky but not impossible).

Thing is, Meggy doesn’t care – she simply loves the endless repetition and sameness. She finds it a comfort and a stimulant. She doesn’t really stim whilst I play she simply sits and stares, fascinated – Daddy is the stim whilst he plays.

I pull off a particularly tricky reverse jump/punch and decapitate one of the irritating shambling skeletons and feel nauseatingly pleased with myself. You can guarantee that I’ll try and do that again, only better, next time I go through this bit.

Lots of Doctors and other professionals will tell parents that encouraging stimming (stimming is autistic behaviours that the autistic finds stimulating – usually hand flapping, rocking, singing, walking on tip toes, circling a room etc) is A Bad Thing (and yes, you can hear the caps in their voice when they say it) but I say – bollocks to that – she enjoys it and as far as I can see it does no harm. Lots of autistics say its a calming thing and help them ‘synchronise’ with the sensory input all around them. Sounds pretty good to me.

Uh-oh. I have to fight Spike. Particularly beloved by my wife on the show (Weird. He’s peroxide blond and emaciated. I’m dark haired and what can kindly be described as ‘big boned’.), Spike is Buffy’s arch-nemisis until Season 6 of the show when they become lovers. Spikes quite hard to beat – especially when you’re playing the game on ‘insanely difficult’ – and my aim in this section is to kick the crap out of him without him laying a hand (well, claw) on me. After a particularly sexy prolonged hanging bicycle kick he flees. Chicken.

This signals the end of Megan’s interest in the game. Where most kids might wander off and do something else, Megan simply makes me restart the game from the training level again. She’s the same with all her interactive devices – she likes to watch the BBC ident screen at the end of her Teletubby DVD’s again and again and sits with the DVD remote watching, rewinding, watching, rewinding, watching, rewinding until whatever governs these things is satisfied.

I prefer playing Buffy to watching the BBC ident appearing and fading hundred of times.

And so off Buffy and I go again, she runs towards the edge of a cliff, I press the red ‘A’ key and she jumps the Cliff and grabs the edge of the opposite cliff and runs off towards her final (to Megan) fight with the dead bloke my wife fancies called Spike in 9 mins 26 seconds or less.

Autistic Pride Day: Generalisations Don’t Help

3 Jun

I’ve been very critical on this blog of a book called Evidence of Harm and its author David Kirby. The book claims to offer ‘evidence of harm’ in that American children have been systematically poisoned over the last few decades and ‘made’ autistic.

Aside from the many factual errors in the book and aside from the poor science used to underpin it there are larger issues to do with making assumptions about autism and autistic people that this book doesn’t just use but actually swallows wholesale.

Throughout the book and on the websites that support it, parents are pictured as crusading hero’s and their children as ‘a parents worst nightmare’, ‘stolen’, ‘missing’, part of an ‘epidemic’ and likened to a plague. The book applies this picture to *all* autistics and makes no attempt to differentiate between those that may be mercury poisoned and those autistics who are born that way.

A fellow parent and friend, Kathleen Seidel, wrote an open letter to David Kirby that captured the feelings of those parents who don’t feel that their kids are ‘a parents worst nightmare’ or believe that our kids are poisoned. She addresses the increasing venom and hysteria vocalised by the growing Evidence of Harm readership towards us and asks David Kirby what he intends to do about it. I have linked to this letter recently but this Autistic Pride Day I think it needs repeating. You can find the letter in its original form on neurodiversity.com but with Kathleen’s permission I replicate it below.

— begins —

Dear Mr. Kirby,

I am the mother of two teenagers, one with a diagnosis of Asperger Syndrome. I am writing to you not to debate the mercury-autism causation hypothesis, but to express my concerns about the impact and implications of your efforts to promote your book, Evidence of Harm, and the efforts of members of the Evidence of Harm discussion list on Yahoo! — your ad hoc, grassroots publicity team.

While I appreciate your concerns about thimerosal and the concerns of parents who have legitimate reason to believe that their children have suffered from vaccine reactions, I would like to remind you that there are a great many parents who do not suspect vaccines as a cause of their children’s autistic spectrum condition. I am one of those parents, and I can hardly express to you how offended I am by the aggressive media campaign being pursued by those who seek to hold pharmaceutical companies liable for the fact that their children are autistic, by attempting to persuade the general public (which encompasses voters and potential jurors) that most autistic people are victims of mercury poisoning.

It is a legal and political strategy with several main elements:

§ Promoting popular perception and scientific re-definition of autism as a disease process, and undermining support for other areas of autism research: “Although we all know as parents and advocates that autism is an immune mediated disease, it is important to get that well established in mainstream science and medicine. Moving the paradigm away from chasing the illusive autism gene and silly psychological studies, i.e., scientific masturbation, is of paramount importance.”
(EOH message 1496)

§ Promoting popular perception and scientific re-definition of autism as a phenomenon that is primarily a consequence of thimerosal poisoning, in order to attract new litigants and political supporters: “…once causation is established in vax court or state/federal court, then we will be able to place overwhelming political pressure to amend vica to either extend the paultry 3-year statute of limitations or reopen briefly so that any mercury-injured kid can have access to the process.”
(EOH message 344)

§ Destroying the individual and collective credibility and reputation of scientists, public health professionals and health care practitioners who have supported vaccination initiatives : “Our main job is to destroy the credibility of the vaccine industry and that’s just what EOH has done.”
(EOH message 719)

§ Convincing the public that autism was practically nonexistent until the beginning of widespread vaccination in the mid-twentieth century, and that we are now in the midst of an “autism epidemic” : “…everyone does not even know that there is an autism epidemic and at a practical level, simply establishing that fact remains the most important work we can and must do.”
(EOH message 1761)

§ Denying the very possibility that there exist a significant number of adults whose early developmental pattern resembled that of children currently diagnosed with autistic spectrum conditions, for without that denial there can be no “epidemic.” This is a denial publicly pioneered by Mark Blaxill (http://bmj.bmjjournals.com/cgi/eletters/323/7313/633) that you have repackaged and reasserted in your recent essays in The Huffington Post and British Medical Journal (http://www.huffingtonpost.com, http://bmj.bmjjournals.com/cgi/eletters/330/7500/1154).

§ Using deliberately emotional appeals such as the “Recovered Kids” video to persuade the general public of the “truth” that autistics are poisoned: “the more visual and auditory we can make the message, the more people we can reach and the stronger impact we can have on them.”
(EOH message 2856)

It is a legal strategy undertaken with little regard for the fact that a significant proportion of families have no particular reason to suspect thimerosal poisoning as the cause of a family member’s autism. I have read many online newsgroup posts (including posts to the EOH list) written by parents of autistic children who do not describe witnessing any specific reaction at the time that shots were administered to their children, but who have become convinced of the vaccine hypothesis due to the publicity efforts of vaccine litigants. These parents are now consumed with guilt that their good-faith decision to vaccinate their children might have had damaging consequences, and rage at those individuals whom they presume misled them and inflicted damage upon their children, whether that guilt and rage are warranted or not.

It is also a legal strategy undertaken with little regard for the potential long-term, stigma-perpetuating impact upon those autistic people and their family members who are not inclined to believe that all autistics are poisoned. I have observed numerous instances in which vocal proponents of the autism=poisoning hypothesis have displayed outright contempt for anyone who might have come to their own conclusions about their and their family members’ lives, and I will cite many of these instances in this letter.

For example, here is a comment by Lujene Clark, responding to Kevin Leitch, a British father of an autistic child; she and other EOH list members descended en masse upon Mr. Leitch after a blog entry he had written was mentioned on the list (http://www.kevinleitch.co.uk/wp/?p=146, EOH message 1014):

“…if you remain in denial you don’t have to extend yourself or take responsibility to heal your child because it is so much easier to blame “bad genes” and accept your child’s fate. Or worse, try to get your child to accept his “genetic” fate. That is a COP-OUT. Your child deserves better. Get off your lazy bum and start to heal the biomedical problems of your child!!”

When Mr. Leitch stated that he recognized autistic traits in members of his extended family, Mrs. Clark replied,

“it seems apparent from reading your reply there is a history of serious psychiatric illness in your family. My apologies, I would not have attempted to engage in rational discussion had I known you were affected.”

Now, this is quite a toxic attitude to have towards disability, towards evidence of the genetic transmission of devalued characteristics, and towards parents who think for themselves. Do you share this attitude?

Here is another example:

“I believe that most of the parents who are in denial are that way because they have the same genetic predisposition and are toxic themselves and have “symptoms” which is why they believe it is genetic… they see it in themselves. Also, from what I have personally seen, people who are mercury poisoned are defensive and appear in denial in general.” (EOH message 1337)

Is this an analysis with which you concur?

Not all autistic citizens and their families feel that we need “heroes” who loudly shout that the presence of autism in a family is tantamount to poisoning, and that it renders all that family’s members incapable of rational discourse. Not all of us respond positively to “heroes” like Dr. Rashid Buttar, who invokes the image of an autistic person “flipping burgers” in his sales pitch for DMPS cream, a chelating agent promoted as a cure for autism:

“Our success has been all under the age of nine, nine or under. Now since then, when I presented to Congress I told them that I didn’t think this would be effective for older children because the older children would use it, I didn’t see — they got better, they started talking, but they’re not in my book considered normal. They can read, but they’ll never do much more than flip hamburgers for a living, that type of thing. They won’t reach their full potential. But now I’m finding that actually we have a couple of kids, I have three kids that are over the age of eleven, and they’re all having rapid response — actually they’re all children of doctors — and they’re all seeing very good results.”
(presentation mentioned at EOH message 1003; see the entire presentation at http://www.autismmedia.org/buttar5aq.html)

Such appeals to parental fear and status consciousness – pitting the image of the burger-flipping “abnormal” against the image of the doctors’ children who are making speedy progress to “normality” – demean both distinguishably autistic individuals, and individuals who earn an honest livelihood in low-status jobs. This kind of thinking can only serve to perpetuate stigma. Unfortunately, it is an attitude that pervades the daily discussions on the mailing list established to coordinate independent publicity efforts for your book. These publicity efforts include the upcoming “Evidence of Harm Day” aimed at boosting the book’s sales ranking, by encouraging parents to purchase multiple copies (EOH message 2600).

Indeed, the Evidence of Harm discussion list has evolved into a staging ground for ideological assaults, ad hominem attacks and mob actions against parents who express their doubts publicly about the autism-thimerosal hypothesis. Witness the flurry of outraged comments on Mr. Leitch’s blog, and the May 18 collective descent on the Parents Magazine online forum, where a parent, “dangermama,” had posted a forthright, informed response to another parent’s inquiry about vaccinations (http://www.parents.com/community/boards/ thread.jspa?forumID=78&threadID=277579). That campaign all started with a plea to members of the EOH list: “Dear Gang… If anyone is up to giving this person a online beating please chime in” (EOH message 2547). One EOH list member signed on to Parents as “myboycody,” then made over 70 posts to that board over the following 48 hours (EOH message 2556); another returned to the EOH list, admitting, “I love telling people off its great stress relief” (EOH message 2563).

Is this the kind of publicity campaign you envisioned, the kind of moral support you welcome?

Autism and autistics have been described on the EOH list as:

“government mercury vaccine poisoned kids” (EOH message 97)
“Parent’s Worst Nightmare Syndrome PWNS or Living He**” (EOH message 418)
“an equal opportunity disaster” (EOH message 543)
“walking bio-hazards” (EOH message 1469)

Parents who do not agree with your associates have been variously disparaged on the EOH list as:

“in denial” (EOH message 2234)
“clueless” (EOH message 1024)
“embittered and not entirely rational” (EOH message 153)
negligent (EOH message 2197)
“flat-earth(ers)” (EOH message 2172)
“parents (who) have not yet learned the facts” (EOH message 1771)
“brainwashed” (EOH message 2157)
“blinded by hate” (EOH message 2574)
“just taking the ‘safe,’ mainstream road of thought for not knowing better” (EOH message 2155)
“desperate” (EOH message 2195)
inherently lacking in credibility (EOH message 1331)
“old school” (EOH message 3009, EOH message 3023)
“an ugly, feisty fiend” (EOH message 3179)
“unenlightened” (EOH message 3183)

Researchers and practitioners in the areas of cognitive psychology, neuropsychology, genetics, medicine, public health, and education, have been described on the EOH list as:

“lazy” (EOH message 2133)
“vaccine barbarians” (EOH message 190)
“cheap whores” (EOH message 1888)
motivated only by a paycheck (EOH message 222)
“high-minded Fascist germ freaks” (EOH message 1345)
conducting “silly psychological studies” (EOH message 1496)
researching “‘pie in the sky’ stuff unlikely to yield actionable results” (EOH message 2008)
disseminating “malicious public relations hyperbole” (EOH message 1502)
possessed of “retrograde views” (a specific slur against Harvard researcher Dr. Margaret Bauman) (EOH message 1504)
spiritually inferior (EOH message 155)
“pharmaceutical and medical killers” (EOH message 2705)

Autism organizations such as the National Alliance for Autism Research, Cure Autism Now, and the Autism Society of America, have been characterized on the EOH list as:

“establishment” (EOH message 883)
“secular herdsmen” (EOH message 1894)
“carpet-bagging rackets” (EOH message 1975)
“co-opted” (EOH message 1667)
“autism mafia” (EOH message 1502)
“not representing our children’s interests” (EOH message 2008)
possessed of conflicts of interest (EOH message 1453)

Indeed, all those who might fall into the category of “the book’s antagonists” have been called:

“those motherfuckers” (EOH message 69)

Do you concur with these vilifications against parents, researchers and service providers who disagree with the thimerosal litigants’ hypotheses, and/or whose work is focused on different areas than mercury? Not once have I read a post where you suggest that it might be appropriate to avoid insulting parents of autistic children in connection with publicity efforts for your book. When two different list members ridiculed Dr. Melinda Wharton of the CDC with comments about the Public Health Service uniform she wore during a Congressional hearing (EOH message 2393, EOH message 1295), not once did you or any other EOH list member suggest that it might be inappropriate to stoop to childish, sexist jeering in connection with publicity efforts for your book. When an EOH list member made the statement, “Lenny… if it’s genetics, how did such sharp witted parents have such dull witted offspring?” (EOH message 996), not once did you or any other EOH list member make note of the fact that referring to autistics as “dull witted” is crude and demeaning, or at the very least make it clear that this is not the sort of characterization of autistic people that you would want associated with publicity efforts for your book. When an EOH list member revealed her plan to distribute flyers advertising Evidence of Harm at a recent lecture by Temple Grandin on Long Island, not once did you suggest to her how inappropriate it would be for her to promote your book at an event featuring another author represented by another publisher, without first obtaining permission from the event’s sponsors (EOH message 3009).

You have made many public assertions that you have adopted a neutral stance on the thimerosal issue. However, consideration of the discussion on the EOH list leads me to conclude that the “neutrality” is only for public display and that many of the autism=mercury proponents regard you as their mouthpiece. In response to an EOH list member’s complaint, “Whose side is he on? He needs to stop misleading the public that vaccines are now virtually mercury free” (EOH message 1582), another stated, “Well from what little I know he is on ‘our’ side” (EOH message 1668). Another list member wrote, “Kirby may have written it, but EOH is OUR book” (EOH message 2923). Although you might take issue with these statements, they reveal the impression that you have succeeded in conveying to at least two active members of your support network. This is an impression reinforced by your reference to Atlanta, home of the CDC, as “the belly of the beast” (EOH message 279).

If you were truly objective, why is it that Lyn Redwood, co-founder of Safe Minds, was identified as the contact person for http://www.evidenceofharm.com until just recently? (The WHOIS record changed after I made note of the domain’s contact information on a post to the Health Fraud mailing list, also frequented by a number of your EOH list-mates; although you are now named as contact person, the address remains that of another “mercury mom” who maintains the site.) If you were truly objective, why would you begin the discussion on the EOH list with, “Let’s hope the ‘other side’ chimes in,” rather than, “Let’s hope both sides chime in” (EOH message 26)? If you were truly objective, why would there be so little evidence in your public pronouncements that you ever sought to acquaint yourself with adults with autistic spectrum diagnoses, rather than blithely parroting Mark Blaxill’s “hidden horde hypothesis.” Why would there be so little evidence in your public pronouncements that you have sought to acquaint yourself with parents who have chosen not to pursue biomedical interventions with their offspring, or parents who recognize that autism was indeed “born in their house,” and not inflicted upon the family by a villainous conspiracy? Lenny Schafer has exhorted EOH list members to “keep the focus on the good guys and the bad guys” (EOH message 391). According to this world-view, the “bad guys” are not only the supposed Goliaths of government and the pharmaceutical industry, but also many thousands of autistic people who do not identify themselves as victims of poisoning, and thousands of loving, conscientious parents — parents whose life experience does not include “evidence of harm” by vaccines, who have a different perspective on their lives and on the diagnosis that they or their family members happen to share with others, and whose private medical choices have not included elaborate, expensive, experimental detoxification and nutritional supplementation regimens.

Your many years of work for The Advocate suggests that you are alert to issues affecting the gay community. May I therefore suggest a thought experiment. For one week, every time you read an instance of the word “autism” or “autistic,” replace it with “homosexual,” “gay” or “queer.” I have already done this for you on the bumper sticker that appears below; it is modified from the one that Lenny Schafer recently developed and distributed to participants on the Evidence of Harm mailing list — “My child was poisoned by mercury in vaccines, but everyone calls it Autism,” juxtaposed with an image of a skull and crossbones. I provide this image not because I believe the message it appears to convey, but in order to encourage you to consider how it feels for an autistic person to hear incessant, gruesome, emotionally charged descriptions of autism by non-autistic individuals who regard autism as an unmitigated tragedy, as completely unacceptable, descriptions that insist that an autistic person’s experience of the world is a consequence of poisoning, and whose cognitive and behavioral peculiarities are worthy of utter eradication. Although this may seem far-fetched, like comparing apples to oranges, in fact, homosexuality and autism both constitute forms of social deviance in its strictest definition — that is, deviation from the behavioral patterns of the majority. Homosexuality used to be defined as a “psychiatric disorder” — in fact, Ivar Lovaas, the early developer of behavioral interventions designed to suppress the expression of all autistic behavior, was also a pioneer in the development of reparative therapy, designed to suppress the expression of all homosexual behavior.

I hope that you will consider that when you make public statements about autism, you are presuming to speak about an entire class of people who are autistic for life, not simply the subset of parents and minor children with whom you have become acquainted over the past couple of years. For every parent eager to “recover” their child and “lose the diagnosis,” there are autistic citizens who will always have the diagnosis and will always wear the label, and who are affected by the manner in which that label is bandied about by those who hate what it represents to them. People too often talk about “autism” as if it is something separate from autistic people. It is not. And those autistic people and their families — autistic children, the autistic-spectrum adults whose very existence you have publicly questioned, and families like mine — will still be around, still dealing with the stigma of “contamination” that you have helped to promulgate, long after the royalties dry up and you have sailed off to your next journalistic destination.

Sincerely,

Kathleen Seidel

29 May 2005

–ends–

Autistic Pride Day

2 Jun

This month, on the 18th is something called Autistic Pride Day. It probably won’t make the news, you almost certainly won’t see a large march and you won’t have to put up with hearing z-list celebs talk about their solidarity and respect for the celebrants.

Autistic Pride Day is a day that adult autistics chose to commemorate the fact of their autism and the fact that they were proud to be autistic. It should not be confused with Autism Awareness which is a campaign set up and managed mostly by parents and carers of autistics to highlight what they see as the tragic blight of autism.

Autistics today face an incredible amount of generalisation and pejoratives. I’ve heard other parents of autistics describe their own children as – ‘disappearing down a black hole’, ‘stolen’, ‘missing’, ‘a parents worst nightmare’ and their own family situations described in terms reflecting grief and tragedy.

Once upon a time, homosexuality was considered an illness. In fact it wasn’t until 1973 that the American Psychiatric Association (APA) removed homosexuality from its official listing of mental illnesses in its Diagnostic and Statistical Manual of Psychiatric Disorders.

1973. Just over 30 years ago. It seems incredible that people really did think that a persons sexual preference was symptomatic of an illness, but they did. Up until that point, gay Americans were subjected to pejoratives and mind-sets very similar to those that autistics face now. The ‘deviance from normality’ was too much for most families so a lot of gays stayed quiet or grew estranged from their families. Autistic people don’t even have the option of staying quiet. Their ‘deviance from the norm’ leads them to ‘stim’ (flap hands, rock, sing to themselves and a massive variety of other ‘deviant’ behaviours). Its obvious to everyone when an autistic is autistic.

The Black man, it was repeatedly claimed, was uniquely fitted for bondage by his primitive psychological organization. For him, mental health was contentment with his subservient lot, while protest was an infallible symptom of derangement. Thus a well-known physician of the ante-bellum South, Dr. Samuel Cartwright of Louisiana, had a psychiatric explanation for runaway slaves. He diagnosed their malady as drapetomania, literally the flight-from-home-madness, ‘as much a disease of the mind as any other species of mental alienation.’ Another ailment peculiar to Black people was dysaethesia Aethiopica, sometimes called rascality by overseers, but actually due to ‘ insensibility of nerves’ and ‘hebetude of mind’, explained Dr. Cartwright. Whereas psychologically normal Negroes were faithful and happy –go-lucky, the mentally afflicted ones ‘pay no attention to the rights of property…slight their work…raise disturbances with their overseers.

Scientific racism.

The shocking quote above, demonstrates how people one believed that black people were considered ill. How a Doctor could believe that a person desiring freedom could be construed as an illness is bizarre. But it happened.

Benjamin Rush, MD (1746 – ­1813), signer of the Declaration of Independence, Dean of the Medical School at the University of Pennsylvania and the “Father of American Psychiatry, “described Negroes as suffering from an affliction called Negritude, which was thought to be a mild form of leprosy. The only cure for the disorder was to become white.

Vanessa Jackson.

If such a hypothesis was even suggested today, the author would be quite rightly hounded out of the medical profession. Its utterly ridiculous. But it happened.

Autistics today face similar situations, similar ill-informed judgments and similar results. A lot of autistics say that growing up they felt forced to try and bury their autism as much as possible to avoid the judgment of family and peers. Would we find a gay teen having to do this acceptable today? Whats the consensus of opinion on Micheal Jacksons continuing quest to make himself white?

In the days leading up to Autistic Pride day, I’m going to try and write something every day about why I feel this is such an important event for Megan and for our whole family. I’m also going to try and link to articles that offer some insight into what its like to be on the receiving end of prejudice. The first article is written by Amanda Baggs and describes how the mainstream autism advocacy movement (by which I mean medics and parents mostly) are participating in the belittling of autistics.

As to what we’ll be doing on Autistic Pride Day, we’re not sure. My wife’s due to give birth to our new baby sometime this month so it may be on or around this very day. But if it isn’t, then we’ll be passing it quietly with Megan. Doing things that she likes to do. We’ll also be thinking of all the autistic adults and children we know and wishing them well and hoping that equality for them comes sooner than it did for gay people or black people.

Autism Myths

26 Apr

Hopefully I’ve shown over the last few posts in the advocacy section that there is a lot of misinformation generated by those who wish to debunk the idea that autistics can self-advocate.

Recently a new site has sprung up that seeks once and for all to debunk the idea of self advocacy for autistics – indeed, they claim that the advocacy movement are frauds. Here’s their opening statement:

In stark contrast to the widely recognized medical opinion that autism is a debilitating neurological disease, a small, (yet noisy!) group of individuals in Canada and elsewhere has become very vocal and active in the autism public policy debates and struggles. They have become forceful advocates for the bizarre fringe notion that autism is a misunderstood “culture” rather than what science knows it to be – a very serious disease of the brain.

They back this up with a quote from their arch-nemesis, Michelle Dawson talking about autistics:

We are not a plague. We are people who have a culture: a large published literature, art, music, architecture, design, technology, science, and engineering.

Anyone seen it yet?

Michelle Dawson quite categorically says that ‘We are people who have a culture’ whereas what this site claims is that the autism advocacy movement says is that autism is a culture as oppose to a medical condition.

This very basic error lies at the heart of the misinformation peddled at this site. All through it, they make claims which are pretty much all based on their premise that the advocacy movement claim autism IS a culture. Lets be clear – they do not. None of the big websites reflecting the advocacy movement claim anything of the sort. That doesn’t stop this site though – they have misinformation to peddle and the go to it with glee:

The “autism is a culture” fringe has repeatedly sent messages to those who support autism treatment suggesting that autism treatment is symptomatic of intolerance and cruelty. Nothing could be further from the truth, yet their messages have become increasingly accusatory and offensive. Many have complained of being harassed by frequent intimidating messages from this group. They have even made public personal attacks against individual parents accusing them of being “liars.” While some consider this fringe group as truly being from another planet, others have requested that a website be created to help people unfamiliar with autism issues put them in their proper context and perspective.

Although we live in a free society where everyone, including frauds, have the right to express themselves, every opinion expressed in public, especially if presented as a fact, should be subjected to critical analysis. The misguided and misleading arguments of the “autism is a culture” fringe are most deserving of such analysis.

See what I mean – they’re wilfully building a very large strawman. Its easy to prove something when your opponent has never claimed otherwise – the argument this website puts forward is like a creationist saying that because monkey’s don’t give birth to humans evolution is false. But hey, don’t take my word for it – here’s three of the biggest advocay websites on the planet (the Yahoo one requires registration). Have a good nose around. If you can come up with a sizeable concerted group on these sites claiming that autism is a culture then I’ll concede the argument immediately.

Before I go on, you may want to have a look at this website I’m referring to. Go have a good read and bear in mind what I’ve said about who’s claiming what about culture.

Back already? OK. In the quote above, the authoress of this site says that:

messages have become increasingly accusatory and offensive. Many have complained of being harassed by frequent intimidating messages from this group. They have even made public personal attacks against individual parents accusing them of being “liars.”

Firstly, this is an easy thing to claim and should be very easy to back up – so where are all these harassed, intimidated people? They certainly don’t seem to be present on that website. Of course the bit that made me laugh out loud was the bit that said people had been accused of being liars. This on a site peddling a basic lie – that autism is being advocated as a culture. Maybe if you don’t want to be accused of being a liar you should um….stop lying?

Moving on through the site, I note the ‘Professional Opinion’ section. I click it and lo and behold – its a section about Lenny Schafer! My joy is practically unconfined!

The authoritative Schafer Autism Report is a regular internet periodical that has a circulation of approximately 20,000.

Mr Schafer must be in heaven – at last someone thinks he’s an authority! He’s not. He’s one man with an opinion. His high circulation isn’t solely made up of his supporters (I’m signed up for example) and thus his claim of authority (and authority on what exactly?) is suspect to say the least.

Actually, its not really about Schafer its more about ABA. And again, its full of assumptions and misdirection.

Firstly, not all in the advocacy movement oppose ABA. A lot oppose the Lovass style of ABA and with good reason but a lot of people in the advocacy movement are receptive to the idea of ABA in its more progressive and less abusive modern form. No mention of that seems to be made on this site and nor was it made in the articles Schafer solicited to back up his view. Again, if you disbelieve me, go browse the sites I list above. You’ll find contributions from ABA practitioners in several places.

Secondly, the attacks listed in this page are all centred on Michelle Dawson. Thats fine, she’s eminently capable of fighting her corner but Schafer (and this site) made the schoolboy error of associating everything Michelle says as being ‘the law’ for the advocacy movement. Let me assure you that she herself doesn’t feel this way. Lots of people in the advocacy movement disagree with Michelle on lots of points. Attacking her is in no way equal to attacking autism advocacy and its pretty silly to think it is.

And now we come to the very epicentre of bullshit – the centre of this site: Myths & Facts about Autism.

When I first read this page I must admit I started to snigger somewhat childishly. Its at this point that i realised how very desperate the pro-cure autism crowd had become. Its basically one giant strawman. A lot of the stuff on this page has never been claimed by the advocacy movement as a whole. Lets go through them.

They say:

MYTH: Autism is a Culture: Autism is a culture, unlike cancer which is a disease.

FACT: Autism is a Disease, not a Culture: Despite the arguments of people who have adopted autism as their affliction, autism is the most serious childhood neurological condition a child can be diagnosed with. There is clear consensus on this point.

I say: The advocacy movement has never claimed that autism is a culture. Never. Your facts aren’t wrong, they were simply never disputed. Why are you arguing with yourself?

They say:

MYTH: Autistics are Victims of Intolerance: Past intolerance toward homosexuals, blacks and women from the political and academic community indicate that our society is doing the same thing to people with autism, not accepting their ethnicity, gender or sexual orientation.

FACT: People with Autism are Victims of Ignorance and Political Correctness: The existence of political intolerance of other groups in history is irrelevant to the plight of autistic children who are denied treatment by people who do not understand the consequences of not providing treatment. Chemically lobotomizing people with autism by giving them drugs to control symptoms or strapping them to wheel-chairs so they can live in the community is unethical, yet is the misguided, politically correct alternative to ABA treatment.

Autistics and the advocacy movement have never denied that autistics need help. In fact in several papers at autistics.org the authors make a clear point of requesting it. Some people may be against some forms of treatment but ascribing a unified set of beliefs to a whole subset of people is inaccurate – wilfully so. If you have MD’s who’ve suggested your only alternative is ‘chemical lobotomisation’ or ‘strapping them to wheelchairs’ then I strongly suggest a second opinion. As it is, I don’t believe for a moment you included those alternates for any other reason than to provoke emotional reactions. Again, its simply untrue to suggest these are the only alternatives to ABA. And don’t forget that the advocacy movement is not against ABA, they are against some implementations of ABA having either witnessed or received abuse thought its use.

They say:

MYTH: Parents Can’t Accept Their Children’s Autism: This is all about parents making their children conform to neurotypical people because these parents can’t come to terms with the fact that their children are different.

FACT: Parents Love their Children, Not Their Disorder: It is as absurd a notion for a parent to love the child’s autism as it is for a parent to love the child’s cancer. Autism is not part of the child, it is the disorder with which the child is afflicted.

Simply wrong. Autism is part of the child. My daughter is autistic, she doesn’t have autism. However, thats my opinion. Neither of us can be proven right. But consider this – your childs autism permeates everything that they see, hear, touch, think, dream, experience etc. It can’t be removed (which is what makes comparisons to cancer so facile) and it can’t be completely negated. Knowing all that, how can you realistically think that the way your child functions is anything other than autistic? And if so, how can you hate that? Lets not forget that homosexuality was once classed as a medical condition requiring treatment.

(The next few are about ABA specifically and I think (hope!) readers are getting why these points are unnecessary for me to cover again).

They say:

MYTH: Autistic People Need Understanding, not Treatment: Autistic people without treatment would do fine if we were just more understanding. The majority of people with autism would end up living fine lives independently if we would only understand them and change the world to accommodate them.

FACT: People with Autism Need Treatment: Those closest to their children with autism, and the medical community, understand that treatment is the only hope for children to live independently. The concept that “understanding” will cure all is cruel since understanding will not help a person suffering with autism learn to communicate, stop self-injury (among other deficits and excesses characteristic to autism). In addition, there are many self-stimulatory behaviors, such as self-mutilation and masturbation, which will not be accepted in public and will cause people with autism to end up in incarcerated, or as life-long wards of the state, in large or small institutions. Changing community standards to accommodate these sometimes dangerous behaviours is a pipe dream.

I say: The autism advocacy movement has never said that autistics don’t require treatment. Go have a look on autistics.org and you will find articles detailing the sort of help autistics themselves say they need. Its really very easy to check these things – why do you continue to argue cases that no-one in the autism advocacy movement is? What the autism advocacy movement is opposed to is the idea of a cure. Treatments are both necessary and vital. No one claims otherwise.

They say:

MYTH: Autistic people are uniquely qualified to study and understand autism: Only people with autism can understand what it’s like to have autism; therefore, they are uniquely qualified to study autism and decide how all people with autism should be treated.

FACT: Academic Researchers are Qualified to Study Autism: Researchers study disease. A person need not have cancer in order to study cancer and develop a treatment or cure. Having a disease does not qualify one to be researcher or expert for that disease. It qualifies one to be studied by researchers.

I say: That assertion is entirely illogical. Firstly, autistics are the only people who can understand what its like to have autism. Thats simple common sense. Logically then this means they are indeed uniquely qualified to study autism. The advocacy movement has no strong unified position on whether they should decide on treatments. If they do, I’ve never heard it expressed. Thirdly, lots of autistics are also academics. The two thing aren’t mutually exclusive.

They say:

MYTH: People With Autism Are Eloquent Self-Advocates: The eloquent spokespeople who claim autism is a culture are not, in fact, autistic with evidence from an independent medical examination.

FACT: Autism is Characterized by Serious Communication Deficits: One of the characteristics of autism is a marked difficulty to communicate. These self-proclaimed autistics would not be diagnosed with autism by any independent medical examiner based solely on their eloquence and critical thinking capabilities.

I say: Again, simply untrue. Its very easy to claim these things as facts but not so easy to back them up and is entire supposition on your part. One of the characteristics of autism is indeed a marked difficulty in communication. But not an impossibility. A sudden ability to communicate is not indicative of a miracle cure or other sudden lack of autism. if it was every child who uses PECS would lose their diagnosis immediately. Once again, its lazy, facile thinking thats not backed up by anyone with any pretension at a medical background as far as I can see.

In fact, there have been numerous instances of world leading researchers such as Simon Baron-Cohen (Professor of Developmental Psychopathology and Director of the Autism Research Centre at Cambridge University. Fellow of Trinity College, Cambridge), Tony Attwood (Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey, and Ph.D. from the University of London) etc communicating messages of support to the autism advocacy movement. Surely if they believed that communication entirely cancelled out autism their messages of support would be messages of denouncement?

They say:

MYTH: Adults with Autism Need to Protect Autistic Children: Adult self-proclaimed autistics have the right to make decisions for autistic children rather than their parents (their legal guardians).

FACT: Parents are Their Children’s Rightful Guardians: In western constitutional democracies, the judicial system gives parents the legal guardianship of their children, disabled or typically developing. The belief is that parents are most motivated to look out for their off springs’ best interests and have the legal right to provide care and medical treatments.

More Strawmen (what a shame I’m not planning a remake of The Wizard of Oz). Whilst its true to say that adult autistics do feel a responsibility to the younger members of their community, the advocacy movement that I know does not think that parents should be removed from the decision making process in any way. They seek to educate, not confiscate.

Overall, I’m left with an overwhelming feeling that the pro-cure camp are getting increasingly desperate. Just about every statement on that site is incorrect either factually or by omission. Its in fact so bad that I started to wonder if it was indeed misinformation as I originally thought – maybe it was just simple ignorance? I’m still undecided but I hope that if you’ve found this site (I doubt I’ll get a link back somehow!) that your eyes are open to the dangers of such wilful misleading of people in such a shabby, grubby and underhand way.

Surfing The Autism Tsunami

23 Apr

In a truly fascinating post, Autism Diva provides primary evidence for how seriously the pro-cure autism movements statistics should be taken.

Its a favourite ploy of the pro-cure crowd to whip up hysteria about the growing incidence of autism with fullsome phrases like ‘autism epidemic’ and ‘autism tsunami’ (this last was coined just after the events of Boxing Day 2004 in a tasteful, respectful way to make a point!) being bandied about. Rick Rollens, a former Secretary of the California Senate and Dad to an autistic son coined this lovely turn of phrase. Rollens says the percentage of newly enrolled autistics who are from age 3 to 5 is, 82%.

“a staggering tidal wave of young children”…an “autism tsunami”

Leaving aside the tasteless phraseology (of course, it will come as no surprise that this little beauty was in – you guessed it – a Schafer Autism Report, that purveyor of misinformation and factual ambiguity), is he right? Is California caught up in a huge increase in autism cases? Well, Autism Diva gets it stright from the horses mouth: Rollens gets his figures from California DDS and claims the system is a very accurate way of measuring autism epidemiology in California.

So Autism Diva emailed a statistician who works for California DDS and got this response (truncated):

Although the source of information for many reports on autism for California is the Department of Developmental Services (DDS)’ “Quarterly Client Characteristics Report”, the numbers reported by DDS are often misunderstood and misrepresented by others. Except for Table 2 of the Report, only persons with a Client Development Evaluation Report (CDER) on file who have “active” status in the DDS system are counted in the report tables. So, numbers reported do not represent all persons with developmental disabilities in the State of California. The numbers can not be used to report the incidence of autism, for example.

Which torpedos Rollens arguement very neatly. It also illustrates just how much trust you should put in statistics when quoted by people such as Rollens or Schafer.

Autism Diva: Exposing The Truth

20 Apr

I just found this relatively new blog run by Autism Diva and its one of the best resources I’ve found so far on the statistics that the parental North American ‘cure’ movement love to trumpet. Autism Diva, takes the alarmist stats, unspins them and shows them for what they are – manipulated data used in dubious ways.

So far, Autism Diva has lifted the lid on the so-called autism epidemic and has recently set her sights on a previous target of mine, Generation Rescue.

My only complaint about her site is that I can’t find an RSS feed for it! The content is brilliant and the logic inescapable.

Lenny Schafer Part III: Desperation?

14 Apr

Mr Schafer’s continuing campaign to drive a wedge between classic (Kanners) autism and Aspergers Syndrome continues apace. However, those of us who are afficionado’s of Mr Schafers note an increasing use of modified language coupled with more disingenuous ploys. In his latest report he says (and remember the overall goal here is discrediting the link between AS and Kanners autism):

Presently, anyone with a mental disorder can label themselves as “autistic”, presumably to avoid whatever stigma attached to their actual particular diagnosis. Who is to know otherwise who is really autistic? The differential diagnoses in these areas can be quite difficult for the experts (let alone for any amateur.)

Which is all very true but why is he saying it? I could call myself an elephant if I wish but it doesn’t make me one. The ‘who is to know who is really autistic’ line is patently a dig at the autistics who have challenged Mr Schafer but who have refused to publish their private medical diagnosis’ on the internet for his personal approval. Yes, anyone can call themselves autistic and I’ve no doubt that some who claim autism aren’t really autistic, just as some who claim some kind of expert knowledge on diagnostic criteria are also patently inexpert, but really there are bad apples everywhere in every social setting. Attempting to write off an entire section of society as part of a group of decievers is as facile as it is incorrect.

We are starting to witness ugly sociopath and sometimes violent behavior from people who claim to be “autistic”. They display behaviors that have little similarity to any disorder on the spectrum, Asperger’s or autism. The immediate source of concern from myself and other parents over the proper use of spectrum labels is our witnessingn of some of these self-diagnosed “autistics” banding together for political advocacy.

Sounds scary huh? Well, maybe it would if it was representative. First Mr Schafer rolls out his patented ‘Remote Diagnostic’ machine and decides everyone is sociopathic. He then immediately links that very emotive, intimidating and wrongly used word with a group of people who, at worst, disagree with him. I’m in no doubt that Mr Schafer has been on the recieving end of some threats and abuse by some people – some of whom may be autistic, some of whom may not – but the point is this: Mr Schafer is blatantly and quite shamefully attempting to make political gain out of this by associating this almost certainly tiny idiotic minority with the larger advocacy movement. He also interestingly makes a blanket statement regarding how ‘other parents’ are concerned. Well, I’m not. I think the autistics (and yes, Mr Schafer, they are, by every criteria you care to nuzzle at, autistic) have the spectrum labels pretty much spot on – as do every important autism researcher on the planet. The only people who don’t are the CAN/GR/MMR/Epidemic apologists who refute scientific evidence with their own increasingly irrelevant and error-strewn theories.

The thrust of their advocacy is to redefine autism as not being a disability, but rather a lifestyle that society should learn to accommodate and not treat or “fix”. They have already had some success at this in the media, to our horror.

A lifestyle? Deary me, Mr Schafer, if I were a lesser man I would feel myself getting quite annoyed at your patronising, wilfully ignorant stance. I’ve never spoken to any autistics either in person or online who have tried to promote their autism as a lifestyle choice. Yes, they promote acceptance – do you ever wonder why it is that you do not? Yes, they also turn away in horror at the idea of a cure. They are autistic, they are who they are and you want to find a way to stop them being who they are. I find it bewlidering that you can’t see that people would be upset by that – your attitude smacks of those who used to treat Emily Pankhursts supporters as insane and commit them.

I’m personally glad to witness the success they’ve had as it mirrors my own beliefs that society should be more tolerant and accepting of difference (the drive to eradicate what we don’t understand immediately is something I’d imagned long dead in the West’s colonial past) and I think your gross and I suspect deliberate misrepresentation of autism as a lifestyle choice and your further association of those who disagree with you as purveyors of that choice is arrogant, misrepresentative…and a little bit desperate.

No one had problems with anyone on the spectrum calling themselves “autistic” before these exploiters started to take advantage of our loose usage of the term. This is what is behind our fears. Their efforts to make everyone and themselves feel better about autism by redefining it innocuous will come at the expense of everyone on the spectrum

Yet again, more misrepresentation – I’ve never heard any autistic speak of autism as innocuous. A simple look at sites such as autistics.org reveal people who suffer greatly with some of their comorbid conditions or whos autism has led them through struggles that would reduce Mr Schafer to well, maybe appreciate their view a little more? Yet, they refuse to be defined by their struggles and wish to be proud of who they are. They don’t wish to make other autistics feel better by redefining it as innocuous, they wish to make other autistics feel better by standing up and being heard in the face of what is becoming an increasingly desperate and deliberate demonisation and belittling by people who know they are losing the argument.

Lenny Schafer Part II: A Masterclass In Misinformation

29 Mar

You have to hand it to Mr Schafer. As a dealer in misinformation and alarmist tactics he’s second to none. Oh sure, he occassionaly lapses into a more open view of what he really thinks of people with autism:

those who would define Aspergers or autism as little more than an odd-ball minority lifestyle made up of ‘geeks’ and savants with ticks doing tricks……the very real, if not romantic ‘culture of autism’ in which anyone who taps a pencil can opt themselves in as a member.

But most of the time he’s actually very good at how he spins his misinformation. If Alistair Campbell or Karl Rove ever need a stand in, I’d be happy to write Mr Schafer a glowing recommendation. Here’s part of a response he wrote to a woman asking for his ideas on who has the final say on how autism as a spectrum disorder is classified:

There are eight established Asperger’s care and advocacy groups on the east coast with good community reputations who refer to themselves as autism organizations, despite clinical Asperger’s being different from clinical autism. Why would such groups seem to go out of their way to confuse the public so? By referring to Asperger’s as autism, it helps paint Asperger’s as a serious disorder, which is understandable. But it also trivializes autism, making it appear to be less serious than it is. Those self-described autistic people who demand that autism not be cured or treated highlight the threat this blurring presents to people who really have autism.

Wow! Now, concentrate hard here because there’s so much spin and misinformation going on here that its easy to miss the true genius of Mr Schafers abilities in misinformation. Lets take them one by one.

First, the biggie – “despite clinical Asperger’s being different from clinical autism”. Lets just stand back and admire that for awhile. Until recently, Mr Schafer hasn’t used the word ‘clinical’ in his reports at all. His line has been that Aspergers is not autism – end of story. Obviously the constant chip chip chipping away from autistic advocacy groups has rendered Mr Schafer more ammenable to using more appropriate language. However, through the clever use of this phrase he makes it appear that he’s maintaining the exact same position – well done Sir!

Unfortunately there are serious flaws with even this statement. First of all, Mr Schafer is not to the best of my knowledge, a diagnostician except of the armchair variety and hence any interpretation of diagnostic criteria on his part should be viewed with at best, healthy scepticism. Secondly and more substantively, a lot of properly accredited and qualified autism researchers and clinicians are very unhappy with the recent change in the diagnostic criteria that leads Mr Schafer to be able to make his statement at all.

The diagnostic criteria in the DSM, which provide a differentiation between autism and Asperger’s syndrome, have been examined by several research studies over the last five years. There has been some criticism from clinicians and research that the criteria do not identify the disorder Hans Asperger originally described. The four cases he described in his original paper would be diagnosed, according to DSM criteria, as having autism not Asperger’s syndrome. (Miller and Ozonoff 1997). If one was to use the DSM criteria, Asperger’s syndrome would be a very rare condition.

Dr Tony Attwood

Which is to say, that yes, Mr Schafer is correct, there is a difference between clinical autism and clinical Aspergers but that it only exists through the reclassification of Aspergers into something that was not described by the man who first classified Aspergers Syndrome. A disengenuous solution ingeniously expoited by the ever-ready Mr Schafer. After all, as he himself says:

Some experts have problems with these definitions, and who is to say they’re wrong. It’s just the only standard out there for defining the labels. The fuzzier the labels are, the more room there is for mischief.

You cheeky scamp Mr Schafer! Next you’ll be telling us that Aspergers and autism don’t fall under the exact same set of Pervasive Development Disorders or Autisitc (note that word!) Spectrum Disorders however I suspect that seeing as, at bottom, both Kanners autism and Aspergers syndrome actually do depend on the same set of basic differences you’ll be scuppered. Bad luck.

Next up is Mr Schafers statement that:

By referring to Asperger’s as autism, it helps paint Asperger’s as a serious disorder, which is understandable. But it also trivializes autism, making it appear to be less serious than it is…

Mr Schafer cleverly omits telling us who exactly would be ‘trivialised’ by this painting of Aspergers as a serious disorder. Mainly as one suspects not many people would be. The truth, as experienced by numerous people on both flavours of the spectrum, is that both are pretty serious. It does make one wonder why Mr Schafer is quite so determined to seperate Aspergers and autism, despite medical data stretching back decades that quite baldly and repeatedly states they are linked. I personally have to come to the conclusion that he is growing ever more concerned at the growing amount of people within the actual autistic movement (i.e. autistics and their parents) who challenge his misinformation and spin in growing numbers and with growing confidence to share the truth – if he can seperate the two then he can dismiss the Aspergers autistics as irrelvant to his push for a cure. It must be deeply irritating that there simply is no evidence to support his position of seperation.

Next, Mr Schafer goes over his position once more:

Those self-described autistic people who demand that autism not be cured or treated highlight the threat this blurring presents to people who really have autism.

Ahh, a masterstroke: using the traditional scare tactic and doubling the scare factor by making it an unfounded, unsubstantiated and medically incorrect statement! Truly in the annals of spin and misdirection Mr Schafer is a magician. ‘Self-described’ people indeed – genius! Or it would be if these autistics actually were ‘self-described’. Unfortunately the evidence is, at best, out on this issue and very very likely to indicate the exact opposite. Far from being ‘self-described’ these people are actually merely circumspect with their private medical data. Ironically, the only person who seems to make a habit of off-the-cuff diagnosis is (drum roll…) Mr Schafer. In fact, he’s so good he can even make off-the-cuff diagnosis of people over the internet! Surely I can’t be the only one simply amazed that diagnosticians are not clamouring at Mr Schafers door to learn the secrets of his (no doubt patented) Automatic Autism Judger.

Sadly Mr Schafer’s spin cannot stand up to the rigorous process of ‘checking for oneself’. Upon undertaking this process one discovers that (gasp!) no autistics claim to not want any treatment (or at least the ones I’ve spoken to anyway). They do ask that society treats them with enough respect that they are not labelled as part of a ‘disease’ or ‘ticks with tricks’ or ‘an odd-ball minority lifestyle made up of ‘geeks’ and savants’ or that they can reach a position where people respect them for their difference instead of trying to cure the incurable. But treatment? Oh yes, autistics ask for that. They are fully aware of when they need help and under what circumstances our role as supportive parents can make life easier.

Mr Schafer is also a staunch opponent of the opinion that the rise in autism rates can be attributed to better detection and diagnostic criteria. He says:

It was the new criteria for autism defined in the DSM IV that was the impetuous for the charges of the autism epidemic being
an illusory artifact of different diagnosing. In other words, this argues that there has always been an autism rate of 1 to 166 and only now because of the new definitions it appears to be a big increase. This is ridiculous because it would mean that there are still hidden hoards of autistic people from before the new definitions still walking around un-or-misdiagnosed.

You have to admire the tone, the authority it all sounds so commanding doesn’t it? It almost sounds like he knows what he’s talking about. Almost. Mr Schafers view that its ‘ridiculous’ to assign the autism ‘epidemic’ to better diagnostics is addressed by medical experts – people who actually do know what they’re talking about and who are also experts in the field of early detection of ASD:

However, the signs of Asperger’s syndrome in very young children may be more subtle and easily camouflaged at home and school. On reflection, parents (especially mothers) and teachers have often been concerned about some aspects of the child’s cognitive development, in particular their social reasoning, but their concerns may have been intuitive, and difficult to describe to clinicians. It is not until the child is expected to show more advanced cognitive abilities that formal assessments indicate significant
delay

Dr Tony Attwood

So, when Mr Schafer, a non-entity in the field of medical diagnosis, calls the idea of ‘hidden hordes’ of people walking around ‘ridiculous’, a world renowned expert on ASD and diagnostic criteria says that its not only very likely its actually a feature of the very type of autism Mr Schafer is so intent on denying. Not irony exactly but still a bit pithy.

So whilst we have to admire Mr Schafers increasing attempts at spinning the data we have to deduct marks for the ease of refutation.

This post does have a serious point. Mr Schafer has made his position clear. He will do anything to further his aims. This includes deliberate attempts to mould the facts to meet his version of the truth and misrepresenting an entire group of people. Speaking as the parent of an autistic child diagnosed with severe classic Kanners autism I say for the record that I neither trust him nor appreciate his attempts at wilful misleading of parents. If he had any decency he’d at least retract or admit to the inaccuracies in his beliefs. I doubt he will though and more parents will join the queue to rid the world of their children.

All quotes from Mr Schafer found on Yahoo Groups.

Autism, Misinformation and Lenny Schafer

3 Feb

You may or may not have heard of Lenny Schafer. He runs the Schafer Autism Report – an email digest which collects news stories related to ASD’s and comments on them. He’s staunchly pro-cure.

At the moment, he’s the darling of a wide range of parents who have autistic children who also believe they want a cure for their children.

This puts him firmly in opposition to groups such as autisitics.org who are a group of people on the spectrum who do not wish to be cured. They claim that a cure is tantamount to ‘killing’ them in terms of who they are. An ASD is so deeply part of who they are that they claim to remove or attempt to remove it is effectively removing their individuality. They do not see an ASD as an illness to be cured, more a (different) reality to be experienced.

These two groups are in frequent collision with each other. The group at autistics.org say that for parents to wish to cure their children is a basic denial of their childrens human rights to be who they are. The group vocally represented by Lenny Schafer say that to deny their children the possibility of a cure (should one ever exist) denies them the right to participate fully in life.

Both views, on the face of it, have some merit. They’re both definitely born out of a desire to do the best thing for autistic people. However, look past the surface legitimacy of the Schafer led group and you see a loose conglomeration of alarmists using very questionable tactics.

The first tactic the Schafer group uses is to say that as parents they are the only ones allowed to speak for their childrern. This is true up to a point. I certainly feel that as my daughters advocates, my wife and I are best placed to say what is best for Megan. However, lets not forget that Megan (or any autistic person) is not ill. What they have is part of them in the same way that I am right handed and dark-haired. In terms of speaking for my daughter on issues to do with autistics life experiences, the group at autistics.org are vastly better placed then me to represent her. Why? Because they, like her, are on the autistic spectrum.

One of the most obvious things about any child is that they grow up. They grow up and develop a sense of who they are and like any person affiliate themselves to particular viewpoints and opinions (politics, football teams, human rights etc). As they do this who are we to decide that who they are is something we as non-autistics are entitled to cure? I’ve spoken to a lot of autistics both in person and online and I can honestly say I have never met any who wish to be ‘cured’. The wish for a cure seems to be the sole province of non-autistics.

This brings me neatly on to the second tactic, Schafer et al employ. They claim that those at austics.org and the other groups associated with them are comprised of individuals who aren’t actually autistic. This claim rests of on two points. Firstly, they say that some people within these groups are not on the spectrum whatsoever. To prove this they ask to see the official diagnosis of the group members. As far as I know, no one from the group opposing a cure has provided details of their diagnosis and why the hell should they? A persons medical diagnosis is their own private business. It speaks volumes about the depths that Schafers group is prepared to sink to if they consider that publishing one’s private medical business or forwarding it to anyone else is an acceptable rebuttal. Secondly, they claim that of those people at the autistics.org group who are on the spectrum, most of them are high functioning and/or Aspergers. Why is this an important distinction? Well because they back up this by claiming that those who are high functioning cannot possibly empathise with those who have a more severe form of autism (note how they seem to feel that they as non-autisitics they can empathise with their childrens autism). Schafer himself has undertaken a bizarre campaign to actually remove Aspergers Syndrome from the ‘list’ of syndromes that the phrase ASD covers. Do any leading theorists in the field of ASD believe Schafers claims that Aspergers is not an ASD?

Professor Simon Baron Cohen (Professor of Developmental Psychopathology and Director of the Autism Research Centre at Cambridge University. Fellow of Trinity College, Cambridge) certainly doesn’t seem to feel this. In a letter to Aspies For Freedom Professor Baron Cohen states:

As you may know, I was one of the first to write in the scientific literature that autism and asperger syndrome could be viewed not as a disability but as a difference. That was some 5 years ago.

What about Dr Tony Attwood (Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey, and Ph.D. from the University of London). He says:

Dr Hans Asperger, an Austrian paediatrician, originally described Asperger’s Syndrome in 1944. The syndrome has more recently been classified as an autistic spectrum disorder.

Also in a letter to the afore mentioed Aspies For Freedom, Dr Attwood states:

Thank you for your message and I share your concern with regard to the zealous way in which some people would want to cure autism. I think by doing this we would lose one of the essential aspects of the human condition.

So thats two very big-hitters in the scientific community who patently disagree with Schafers opinion that Aspergers Syndrome is not an ASD. They also have clear reservations about a cure. Schafer, I might say, has zero medical training to the best of my knowledge. Not that this stops him from making frequent medical diagnosis’. This formed part of a recent response to a letter to The Schafer Report from Lenny Schafer himself:

Given their (the group at autistics.org one assumes) apparent lack of diagnosis documentation, the misanthropic attitude and behavior of those in this group appears to be more like Borderline Personality Disorder, which is a
differential diagnosis to Aspergers.

I repeat again, unlike the expert researchers quoted, Lenny Schafer to the best of my knowledge has no medical training. He also claims that because the people at autistics.org are capable of communication this means they are not autistic. Baron-Cohens and Attwoods total lack of indication of the same reasoning in their communication with Aspies For Freedom tends to indicate otherwise.

Once more for the record – Lenny Schafer, to the best of my knowledge has no medical training.

Lorna Wing, possibly the biggest hitter of them all in the field of ASD research presents an excellent overview of the issues in identifying Aspergers as related to autism. She states:

In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger’s clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.

In other words, Aspergers Syndrome is a useful label to give to those not on the spectrum to help them differentiate between the needs of someone with Aspergers and someone with classic (Kanners) autism. No one, despite the best efforts of Scahfer to muddy the waters here, is claiming that Aspergers and classical autism are the very same thing. What the group at autistics.org are claiming (with the full suppoprt of Baron-Cohen, Attwood and Wing it seems) is that they are based on the same triad of differences that constitute an ASD.

The third tactic that the Schafer group utilises is basic fear-mongering. They claim that the group at autistics.org say that no one should help autistic children. This is a lie. They say that the group at autistics.org say that no autistic child should recieve therapy. This is also a lie. What they do say is that there are certain types of therapy which are bordering (and in some cases crossing the line) into abuse (see examples of Lovaas abuse. Please note however that this form of ‘treatment’ is on the decline). Moreso, what they do say is that they need help, that all autistics need help and that this, despite the best efforts of Schafer and his ilk to obscure the fact, is not the same as wanting or needing a cure. A cure removes the autism completely. Interventions into specific situations (comorbidity is the ‘official’ word here) that are aligned to the autism are vital. Below is a quote from an autisitic friend who sums it up perfectly:

I don’t want to be cured. I want a world that understands and I would want help that is effective in helping a child.

Schafer and his suppporters are incapable of seeing this particular shade of grey. To them everything is black or white.

I have to wonder at the mentality of someone who would perpetuate such misleading information and claim to be fighting the good fight (Schafer claims that fighting for a cure for autism is the ‘most noble cause there is’). I can feel pity for Schafer and I know that in his heart of hearts he feels he is doing what is best for his kids but even more I feel pity for his kids should a cure ever come into being. He would administer such a thing in a heartbeat, never thinking that his child, as mine, could be treated for their comorbid conditions and grow up to live a fulfilling life and still be autistic.

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