Autism

I don't see where Kristina has "attacked" parents "generally" for seeking treatment. She refers to someone else's reference to an "autism treatment subculture," and that it exactly what it is...the term does not have to be considered as a negative. There *is* an autism treatment subculture that regards specific, unproven biomedical interventions as preferable to interventions of demonstrable efficacy that require significant input and patience.

I do see where she has justifiably expressed serious concern about using an antiandrogen for "treatment" in the utter absence of data regarding efficacy or safety. Yikes. Is this some secret eugenicist approach to ensuring that autistic males cannot reproduce or something?

I do agree with Dr. Chew that those statements about our children by Dr. Geirs are "short-sighted."  Most scientists do not have children with autism or live day-to-day with autism; therefore, they sometime do say insensitive things and give inaccurate predictions about our children that solely based on their "scientific researches and findings".  Based on the article, it seems to me Dr. Geirs failed to address the comprehensive intervention approaches (biomedical, educational, humanistic...) in helping kids and adults in learning to talk, preparing to work and being a productive citizen in communities.  "To be institutionalized...to be a tremendous strain on our world-leading society" are generalized and "short-sighted" predictions in my humbled opinions. 

Harold is there no cure for you for you are sorely disordered with a social disease, for your dis ease is understandable and yes I do know what you mean, but what you fail to see is the meta narrative behind this, the pressures, the social constrainsts that have essentially forced parents in the North American (and to some extent general Occidental culture) to reify and deify science, to believe that the magic bullet exists and that Hy Brazil (to use the Celts understanding of what lay beyond the Westerm Sea) or Oz as you might call it is the reality and the end point of science.

Well Fritz Lang, an emigre understood dystopia, and you are all the inheritors of that dystopia of mechanistic propulsion into an apocalypse that for you is characterised by the third of the horsemen, but for me by the shining City that Metropolis is not.

Do you even know what I am talking about, Winthrop and all, predicated upon the great schism in England that was our revolution back in the 1640's. America was built in a particular image and nowadays worships the false Gods of Hollywood.

Joe and Jenny if you catch my drift......

Yep that is metaphorical writing (metaphor is greek, as surely as latin creeps into the language of the law)

Tell me truly Harold (I am feeling poetic tonight)

What did they teach you in law school, did you learn nothing of the underlying concepts of law, natural law, philosophy, the social contract, that sort of thing. Or is it all Hammurabi to you?

"Bear in mind, Dr. Chew IS a parent who is "seeking treatment for their child's autism disorder."

She has repeatedly blogged about exactly that.

To claim that she is using "every excuse" to "attack parents" is not only unsupported by anything contained within her above post,  but when the poster making that claim has been challenged to provide a quote, he has always failed, even when the passage under contention has been on the same page as the claim(s).

So Harold, can you provide a quote and show how it links to what you claim?

In addition "evidence based approaches" ARE about deciding "what is best for autistic children and their parents". EBP and EBT is about adopting a rigourous system for analysing and applying research evidence to clinical practice. It is certainly not supposed to compose the entirety of a persons clinical reasoning, as clinical reasoning extends beyond conditional reasoning into ethical, interactive, pragmatic and proceedural reasoning as well.

Like it or not, what is 'right' or 'ethical' is a consideration in therapy, as any health professional will tell you should you ever bother to ask.

"reify and deify science"

Judging from what the Geiers produce and the evaluation of scientific peers as well as judicial evaluation, "science" is not exactly the term that I would apply to their particular endeavors, which smack of the mad scientist with his assistant in the laboratory more than biomedical research. Extend it to that which is similar.

I believe that the correct term is pseudoscience, and may be what is actually deified. (Emily did a bang up job at one time identifying the distinctions.)

As far as the suggestion by the Geier pere that it's either "our way" or straight to the institution; I agree that this is probably what is commonly referred to as a slippery slope argument with a dash of scare tactic thrown in-- still irrelevant to whether what is proposed as a "treatment" has any value at all.

Yes but those who follow what the "enlightened ones" would rightfully censure as "pseudoscience" do in there own internal belief systems, believe that it is "proper science" in other words the credibility that is claimed by the Geiers et al, depends upon the popular conception of the aloof and disinterested scientist whose values are totally objective..

Let us remember people tend as a rule not to act on facts but upon beliefs about what they judge to be facts.

Kristina, it is interesting that the city inhabited by Superman is called Metropolis is it not.

The dark knight of course inhabits Gotham, which is a real place in Nottinghamshire, whence three wise men of that town set out to discover the new world by sailing in a sieve.

I think the Geiers are certainly sailing in a sieve.

For a somewhat different take on this Chicago Tribune article, see http://www.ageofautism.com/2009/05/olmsted-on-autism-welcome-to-illinois.html

Emily said, "There *is* an autism treatment subculture that regards specific, unproven biomedical interventions as preferable to interventions of demonstrable efficacy that require significant input and patience." 

Interventions of demonstrable efficacy include ABA, floor time, special education, speech therapy, and occupational therapy.  Parents engaged in biomedical treatments for autism do also engage in educational and therapeutic treatments.  It is not an "either or".  But many parents report that their kids did not benefit much from ABA etc. until they also began other treatments such as diet and supplements.

Unfortunately, mainstream medicine does not provide much in the way of medical treatments for autism, except for drugs such as Risperdal and Prozac, which are of limited benefit and may have serious side effects.  In October 2002, a Risperdal warning letter was sent to Canadian doctors and pharmacists after reports that 37 Risperdal stroke or stroke-like events like blood clots and hemorrhages occurred, including 16 Risperdal deaths.  Prozac has not been thoroughly studied in children.  There have been reports of suicides among children taking Prozac.

Parents who take their kids with serious gastrointestinal issues to gastroenterologists are often given the brush-off i.e. "Your child has autism -- it's genetic -- nothing I can do -- and/or it's psychological -- constipation caused by whitholding poop to control his/her environment."  I have heard this from parents, and also when I heard Dr. Margaret Bauman speak.  She is a renowned and very experienced autism specialist -- not part of DAN! and not persuaded that vaccines cause autism.  But she said that when a patient has behavioral issues she sends them off to Dr. Timothy Buie, gastroenterologist -- and the behavioral issues often get much better with proper treatment of gastro issues.  She said that it has been very difficult to find any other gastroenterologists who properly treat her patients with autism.

So, Emily, what are these great "interventions of demonstrable efficacy" you mentioned?  Are you talking about education etc.?  Or anything medical?  If medical, where in the mainstream can we find effective medical treatments?

When it comes to medical treatments for immune, digestive, and biochemical/nutritional disorders, parents are often looking outside the mainstream because mainstream medicine doesn't provide much.  And with trial and error many parents and people with autism are finding helpful treatments in the alternative arena.  See http://www.autism.com/treatable/form34qr.htm

I do not have knowledge nor expertise to evaluate Lupron treatment, but I do find it odd that biomedical treatments receive such scrutiny while prescription drugs seem to have a free pass.

P.S.  And I am not faulting people who use prescription drugs.  These are difficult medical decisions.  Responsible doctors use the smallest doses and monitor carefully.  We all do what we have to do to get by.  My son does not have issues to cause us choose Risperdal, but I'm not judging other parents' decisions.

But I am saying that prescription drugs do have risks which must be weighed with benefits, just like chelation has risks and, if done, must be done responsibly by a competent knowledgeable doctor.

Today's Chicago Tribune describes the "troubling record" of Dr. Eisenstein.



http://www.chicagotribune.com/news/local/chi-autism-doctor-eisenstein-may22,0,3826791.story?page=1

I can think of a legit use for Lupron in autistic kids.  It is sometimes used, if a patient seeks treatment young enough, in gender identity disorders.  The reasoning stems from the same line of thought as treating kids with precocious puberty: you block the hormones and delay puberty, but in this case, sometimes artificially long past a 'normal' onset while the patient (in therapy!) works out their gender identity and how they want to deal with it.

Anectdotally, a lot of the aspie women I've known have identified as lesbian or bisexual and not necessarily feminine, internally--I think of myself as about half male and half female, but I'm chromosomally female (as far as I'm aware) and okay with my body, so no transitions for me.  There is also a lot of anectdotal stuff on the web from transgendered people, especially ftm (female to male, which would seem to support a 'male brain' hypothesis of autism, which I think is sort of bunk?) being diagnosed with HFA or Asperger's as kids.

Strangely, I don't think gender identity is what the Geiers were talking about...

The point is that mainstream scientists like Simon Baron Cohen are not guiltless at all.

There off hand comments about there own research, indeed the whole press relations that bigs up anything from Cambridge, leads directly to the kind of abuse that is carried out in the name of science, because it lends credibility to it.

What did that old WW2 poster say "careless talk costs lives"

It does indeed proffessors Baron Cohen, and Rutter.

Rutter, you are one of the worst because you deny reality as much as the Geiers do, you fail to see the artefacts, the whole stream of social construction in you pathetic line of research which you consider noble but I consider to be corrupt, venial, self seeking and above all not even accurate.

Anecdotal evidence is often evidence of false logic at work.

I am category A and I exhibit trait Y

I observe trait Y in a number of people who are also category A

Therefore trait Y must be causally correlated to category A.

It is more probable that it is the dictates of psychology and perception, that cause a primed response toward seeing trait Y amongst ones peers. This is the kind of bad science that our opponents do, when they say such things as "there were no autistics before vaccines"

That last comment was intended as a reply to the Phil Schwarz/Patience st James exchange BTW.

Well in the world of may and mights, the Geiers and there allies take comfort.

I just think that we all can be as faulty as our adversaries when it comes to prefering a particular hunch.

I am probably as guilty as any for clouding my own judgement with more personal observations from what is immediate to me.

The difference is, that in my estimation of the various theries I am accepting of the limits of my own observational and deductive powers.

We all should be, because we cannot make deductions from observations that have yet to be made, and those are only the known unknowns as Rumsfeld put it. We cannot even imagine what the unknown unknowns are to even design experiments around them.

Make no mistake, I consider the Geiers and Wakefield as the lowest of the low when it comes to having a commercial interest in there findings that is sufficiecnt to corrupt any sense of humanity in them, nonetheless I do not hold the likes of Simon Baron Cohen, and Mike Rutter any less irresponsible in there dogged pursual of the extreme male fallacy which leads to all of this. It is indeed the one saving grace of Tony Atwood (despite the legitimate criticism of hisown murky associations) that he allows for the social construction and artificial nature of any thery predicated on the notion that because the majority of people diagnosed on the autistic spectrum are male, this establishes a fact, which it does not until one unravels all the associated problems of clinical and educational practice and social norms that have to be eliminated before one can make any definate judgement.

I stand by my comments.  Laurentius Rex's comment is not worth a detailed response. It is just more insult laced posturing from a person  who continually attacks parents seeking to cure their child's autistic disorder.

The reference by Ms Chew to a treatment sub-culture was not intended by her as a compliment.  It is simply more pandering to the Neurodiversity anti-cure "subculture", an ideology that routinely condemns parents seeking to cure their own children of a neurological disorder.

As for those who assert that Ms Chew seeks to cure her own child's autism disorder you don't read much of what she writes lately.  She may have tried biomed earlier but she writes disapprovingly of such efforts now. Even ABA, she constantly references the use of ABA as an educational tool, not a cure. See the article 10 autism controversies by Kristina Chew and Dora Raymaker on this same site where the co-authors express disapproval of the medical model of autism and attempts to cure. Not in particular the statement in para #2:

"Recovery from autism is neither possible, nor desirable."

http://autism.change.org/blog/view/10_autism_controversies


" 2. Recovery from autism.

Autism is a lifelong disability that is most likely genetic in origin. Nonetheless, claims that children have been "cured" from autism and have lost their diagnosis have been reported and are often given excessive attention in the media. But focusing on recovery distracts from attending to the needs of autistic individuals in the here and now. Parents may put all their energy and resources into so-called "cures" for autism, instead of focusing on the individual in front of them, and on the educational needs of that individual. Recovery from autism is neither possible, nor desirable.

Kristina writes more on this controversy in Once Upon a Time, I Tried to Recover My Son From Autism.

3. Support vs. cure.

The idea of "cure" is tied to the medical model of disability which holds that a person with a disability is "sick" and needs to be "cured;" some internal flaw has "caused" the disability. This is the perspective still taken by popular culture and many autism organizations.

In contrast, the socio-ecological model of disability holds that there are problems instead in the relationship between the disabled individual and their environment; disability is "caused" by a poor person-to-environment match. This perspective rejects the idea of "cure" as nonsensical (and in some ways offensive) as it does not view disability as a flaw that resides solely within an individual. Instead, this perspective asks, what needs to be done to bring the individual and their environment into better alignment? Sometimes that answer is better accommodations and environmental support. Other times that answer some sort of therapy or other form of self-improvement. The social or socio-ecological model is the perspective taken by the general disability advocacy community and many autism rights activists and self-advocates. Socio-ecological perspectives on disability favor the ideas of acceptance, education, and support as keys to a happy, healthy life.

"As for those who assert that Ms Chew seeks to cure her own child's autism disorder you don't read much of what she writes lately"

This was not what was asserted, Harold.

'Treatment' and 'cure' are not synonyms, Harold. One can 'treat' without 'cure'. Just ask someone with say, asthma, diabeties, arthritis or indeed, many of the common conditions that affect many of us.

Asserting that Dr Chew is anti-treatment because she has opposed the concepts used to defend the hunt for a 'cure', is not an arguement that is either supported by her words or her real-world actions. She has expressly stated the complete and exact opposite of the views you implicitly ascribe to her, Harold, including several places in the quote you use as 'evidence'.

Your misreading and mis-representation of your quote is neither appreciated nor does it reflect well on you, Harold.

There are many frames of reference one can use when developing or implementing treatments, Harold, someone was does actual real-world work in autism therapies (Like "King"
Larry for instance) would be more than happy to explain to you the difference between, say, the compensatory/adaptive FoF or the learning/educational FoF.

They will be more than happy to explain to you the difference between, say, cognitive approaches and biomechanical approaches.

They will also be more than happy to point out that 'treatment' without 'cure' is absolutely non-contentious in many other conditions, such as stroke, dementia, asthma, diabeties, arthritis and the like.

To assert that 'anti-the-values-and-norms-typically-expressed-in-support-of-a-cure' is 'anti-treatment' is not a arguement that can be supported, as it is not a dichotomy of 'cure' or 'do-nothing'.

This binary thinking of yours does you no favours, Harold.

Harold - we 'treat' the vaccine-injury.  The vaccine injury will never go away.  Hence, it cannot be cured.  
I think what you may have intended to say is Ms. Chew only treats her son using prescription drugs and other treatments sanctioned by big pharma.  She also asserts that vaccines do not cause autism.  And, she somewhat ridicules 'detoxification.'  But, I bear her no ill will - my son responded dramatically from GFCF and he has continued to respond to bio-med.  Had he not responded and had his symptoms continued to get worse, I don't know what my opinions would be.  Its fair to say they would be different, though, just as Ms. Chew's opinions differ from mine now.
I'm not sure what 'recovery is neither possible nor desirable" means, to her, though.  And, I think it would be interesting to get a group of parents, their autistic (recovered and otherwise) children, and their old home videos of the children together for an evening of movie watching to be followed by a debate about whether 'recovery' is possible or desirable.  

Is Lupron the drug used for children who have very, very high testosterone levels?  Isn't testosterone a synergistic toxin with mercury?  
What is the explanation of the disproportionate number of male autistics??