Thursday, January 19, 2012

Will New DSM end the autism epidemic?

Fred Volkmar, director of the child study center at Yale University has made the very strong statement that changes in the new proposed DSM that are due to come out this December will result in the end of the autism epidemic.

The definitions of autism will become far more stringent, making getting a legitimate diagnosis more difficult. At least according to Volkmar and the people he's worked with who compiled the data and have presented it to a conference. This data is as yet unpublished. Autism researcher Catherine Lord has disputed Volkmar's contention, claiming his analysis in part is the result of antiquated data.

I wonder what are the implications of this. Will people requiring various services or who want to get on disability have a harder time doing so? Will the Age of Autism crowd who insists that some changes in the environment (such as vaccines or more exposures to mercury) have their arguments refuted and be proven wrong if Volkmar's insinuations that the so-called epidemic is an artifact are proven correct? Will the neurodiversity movement have a harder time trivializing this condition, claiming it's not so bad and claiming that perhaps as many of 30% of autistics are savants have a harder time making their argument? Will certain extremely high functioning individuals such as Valerie Paradiz or Deena Gassner who present at conferences and make money from autism have a more difficult time doing so? What of Laurent Mottron and Isabelle Souleries' research? Will they still be able to legitimately claim that all autistics have superior skills in certain areas? There are other questions one could ask, but you can get the drift.

Aside from knowing that Michael Carley will be unhappy that he will have to possibly be associated with head bangers and diaper wearers and may no longer be able to fancy himself an incarnation of Bill Gates or Albert Einstein, Gadfly wonders if Volkmar is correct and if this will really change anything.

My first impression is that the answer is no. Nothing will convince Mark Blaxill, Ginger Taylor, Kim Stagliano and others that their kids did not become autistic because of vaccines. This is apparent to me. They will claim that Volkmar is wrong. Neurodiversity will continue to insist that Jamie Gilbert is not disordered but is only differently wired, that if society were to accommodate him, he'd be able to communicate using an assistive device, he wouldn't engage in head banging. His mother would not need to make all of these drastic videos and post them on youtube. They will claim she is a bigot for not accepting her son the way he is. Like other mothers who long for a cure, she only rejects her son and teaches him to hate himself. If Jamie is unhappy about his head banging, inability to speak and compulsion to self-mutilate it is entirely his mother's fault ala Bettelheim. These vicious hatemongers will not change their color.

I was denied disability, based on the fact that I was able to work somewhat in spite of my limitations, My success was punished while others' sloth was rewarded. The use of assistive devices has apparently given the government an excuse to deny disability benefits to people. Any excuse will be used to deny disability regardless of the reported prevalence of autism.

Having met both Deena Gassner and Valerie Paradiz, it is beyond my comprehension how either of these two merit an autism diagnosis. Of course, I may not know everything about their lives. Both of them allege to have been diagnosed by certified clinicians. I must defer to the judgement of the clinicians and realize that individuals who can attain advanced degrees, get married, have children must have impairments that are not obvious to my untrained eye and somehow merit a diagnosis under the current DSM criteria. But what if the DSM changes? Will Gassner and Paradiz lose their respective diagnoses?

I believe the answer to that question can be obtained by looking at another extremely high functioning individual, John Elder Robison. Mr. Robison had written a best selling memoir based on being on the autism spectrum. When neurodiversity complained of no autistics having positions of power in autism speaks, AS used affirmative action and recruited Mr. Robison, someone who hadn't even completed the tenth grade in school, to sit in a room with M.D. and Ph.D. scientists and decide what research they should fund. Robison also gets to decide how tax dollars should be spent.

This is in spite of the fact that Robison has admitted to not being a disabled person by any means (his words). Though I am not completely familiar with the current DSM criteria, I find it hard to believe you don't have to have some sort of disability to qualify for a diagnosis. Yet, I must defer to Robison's psychologist friend who diagnosed him at age 40. Perhaps there is some explanation as to how a nondisabled person can be legitimately diagnosed with this condition according to current DSM criteria. So somehow I don't see changing the criteria would take Robison's diagnosis away.

Is Volkmar correct? Will this end the autism epidemic (alleged or otherwise)? Will this change anything at all. No, I don't think so.

21 comments:

......I'm Anonymous said...

Jonathan, can you get access to Volkmar's study?

jonathan said...

Anonymous: At this point, no, it hasn't been published, but it was only offered, I believe, as a conference presentation in Iceland, once it's published there's a good chance I could get access to it if I were sufficiently motivated via a variety of ways. However, from what I know about this stuff, it will probably be at least a year before it's published in a peer review journal, assuming it's published at all.

Anonymous said...

"I must defer to the judgement of the clinicians and realize that individuals who can attain advanced degrees, get married, have children ..."

Why do you keep pointing to marriage as proof of social success? Not every marriage comes from a romantic relationship.

Some marriages are arranged marriages between people who did not socialize with each other and trusted their extended families instead.

Some marriages are forced marriages between people who did not socialize with each other and at least one of whom failed to escape from her or his extended family.

Some marriages are mail-order marriages between people who found each other on website, exchanged maybe a few emails instead of going on dates, and promise each other sex in exchange for a visa and money.

Meanwhile, why do you keep pointing to children as proof of social success?

In addition to the non-social marriage matches above, some children are conceived outside marriage during loveless sex (during rape, during gays' and lesbians' attempts to pass for heterosexual, etc.).

jonathan said...

What's the percentage of autistics who get married and have children as opposed to the general population? Would Simon Baron-Cohen and Temple Grandin be able to claim that "autism genes" have some sort of benefit because they've stayed in the population if oodles of autistics got married and had children?

......I'm Anonymous said...

To the Fake Anon, obvious teenager:

The scenario's you site are extremely atypical, mostly done by typical people and are statistically insignificant, especially in the US. You're reaching for any straw possible.

JediKnight2 said...

I believe all pervasive developmental disorders except for autism need to be classified as ASDs.

I also believe MRELD, NVLD, SPD and other language-based disorders need to be classified as ASDs, yet speech-language pathologists, neurologists, psychologists and psychiatrists fail to see how the symptoms of patients afflicted with any of these conditions pretty much cause the same triad of impairments that are found in Asperger's and other ASDs.

Anonymous said...

"What's the percentage of autistics who get married and have children as opposed to the general population?"

How much does that percentage correlate to the percentage of autistics who successfully use social skills? Hint: it's not 100%.

There's a comment at http://www.empowher.com/mental-health/content/tips-being-relationship-man-who-has-aspergers-or-autism?page=1

"Anonymous

I know my husband has AS its everything you all said here in a nutshell and other sites too, but one problem ...he takes it to the extreme.
I met him online and my greencard status he's supposed to apply for me is non existant, ( over a year of control and manipulation) he held me prisoner practically and abused me if I had another point of view, since he just doesnt get the evil done to me.
He took the leadership of the man role (he heard from the pastor) to a whole different level ( since he doesnt understand metaphors and takes things literally) The worst is his entire family has this, his father is practically a narcissist. Im a domestic abuse shelter..go figure.....
I need help if I only knew....sigh....
November 12, 2010 - 11:08pm"

Would you call the husband she describes a social success, automatically NT because he mail-ordered her and could get her pregnant, disabled because of his behavior, not disabled and dangerous to others instead of himself instead, more than one of those, or something else?

"The scenario's you site are extremely atypical, mostly done by typical people and are statistically insignificant, especially in the US. You're reaching for any straw possible."

I'm an adult remembering how damn *common* those unsocial marriage scenarios are in some parts in the world even if not in *my* part of the world.

Even in the U.K., forced marriage is so common that the law has specific measures against it instead of counting an occasional case under only other abuse laws:

http://www.guardian.co.uk/uk/2004/feb/22/ukcrime.gender
http://news.bbc.co.uk/2/hi/uk_news/england/8446458.stm
http://news.bbc.co.uk/2/hi/uk_news/8490947.stm
http://news.bbc.co.uk/2/hi/uk_news/england/bradford/8375456.stm

I'm also not self-centered enough to think that only what happens to people just like me only in the U.S. matters.

Meanwhile, if you think that rape and pregnancy from rape are extremely atypical, then either you don't know about or don't care about the fact that sadly rape is not extremely atypical yet.

......I'm Anonymous said...

Sounds like you've diagnosed your husband yourself and are now attempting to justify his behavior with an AS diagnosis. I think the most telling piece of your story is not possible AS, its the religion.

"he held me prisoner practically and abused me if I had another point of view, since he just doesnt get the evil done to me.
He took the leadership of the man role (he heard from the pastor) to a whole different level ( since he doesnt understand metaphors and takes things literally) The worst is his entire family has this, his father is practically a narcissist. Im a domestic abuse shelter..go figure....."

Go to any orthodox religious community in the world and you'll find the same situation in regards to how relationships are between husband and wife based on their "religious teachings".

This has nothing to do with autism.

Anonymous said...

BTW, speaking of low marriage rates for autistics supposedly being a problem...

...the more a society believes that it is a problem, the more convenient it is for pro-forced-marriage people. Pro-forced-marriage people can point to the marriages they force as a "solution" to the "problem" of people not wanting to marry other people with whom they don't get along socially.

IRL, the more able we are to avoid sex and marriage with people who don't turn us on, the better off we are. That's a great thing, no matter how much people who can't or won't turn anyone on want to get laid themselves!

Nicole Gamble said...

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Jake Crosby said...

"Nothing will convince Mark Blaxill, Ginger Taylor, Kim Stagliano and others that their kids did not become autistic because of vaccines."

Since when was science about convincing people, Jonathan?

......I'm Anonymous said...

"Since when was science about convincing people, Jonathan?"

I think its along the lines of "no amount of science" will convince those who've already convinced themselves. Some people still believe the earth is flat and some still believe we never went to the moon. No amount of science can penetrate "religious-like" thinking.

Ginger Taylor said...

Anon,

Problem for me is that none of the studies that are used to show that vaccines don't cause autism can be applied to my son's case.

He regressed after his 18 month vaccines. None of them contained mercury and he never got the MMR. The ONLY epi study that I know that might apply to his case is the Stoneybrook Hep B study that found that boys had at 3x higher rate of autism when getting the triple dose series of Hg Hep B shots. The first Hep B my son recieved was Hg (and he reacted very badly to it) so that sort of applies, but the rest of the "science" that people want to throw at me, not only is my son represented in the exclusion criteria, they are covering topics that don't apply in his case.

What does apply is the VICP table description of DTaP encephalopathy.

And as far as redefining autism, the fact that it can be redefined at the whim of the medical establishment just goes to prove the point that it is an antiquated term. It is so abused it is practically meaningless at this point. I am kinda with the "stop calling it autism" crowd. It is autoimmune, and mitochondrial and genetic and toxic and lots of other things... but this 70 year old term, at least in medicine, seems to have outlived its usefulness.

Personally, I could not care less if my son lost his "label" tomorrow, he still will need a one on one at school for his own safety no matter what they call what it is they have. But there are a lot of people out there who are about to get screwed.

This change is not to support people, it is to save money and cover asses.

And no... changing the definition of what they call what my son has won't do anything to change my opinion of how he got what he has.

Ginger Taylor said...

Also... just a nit pick...

Blaxill says he does not know if vaccines caused his daughter's autism.

Anonymous said...

"This has nothing to do with autism."

Nothing to do with a learning disability for learning social skills...

...except being an opportunity for people to get married and have children without knowing social skills in the first place.

Of course getting married in those situations doesn't prove one has autism. It *also* doesn't rule autism *out*.

......I'm Anonymous said...

Ginger,

As a fellow parent, may I offer my thoughts for my own particular situation. I started fighting these little vaccine issues and spent a lot of time arguing back and forth with others about my position vs. their position. I found it to be a waste of time and directly consumed the energy I had for other things more important in my son's life such as: my full attention to him as a person and as a child needing me as a parent to be happy and helpful to him; dealing with IEP's, speaking at local school board meetings when they wanted to cut back services; planning for his long term goals; find learning opportunities etc.

Too many parents are simply playing politics, wasting time and energy, imho, over these little back and forth wars on both sides. For me, I found new energy and determination to change things I could and forgetting about changing things I can't. Its our choice to remain bitter and angry or move forward and make the world a better place in our local community. Less anger and less hatred and more positive local action.

Foresam said...

Jonathan, I just want to point out to you that Kim Stagliano and Ginger Taylor are members of Neurodiversity. These two vicious liars do not represent any children with autism. Both of them are double-agents, as is Blaxill.

jonathan said...

Foresam: If you don't believe that I'm a double agent and a member of neurodiversity, then I'm glad.

Foresam said...

Jonathan, Those two lowlife women think the liars from Neuroinsanity are disabled people, LOL.

Anonymous said...

http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html

Anonymous said...

Hi Jonathan
this seems to be the Australian way to end epidemics in mental health
http://naturalsociety.com/australian-bill-allows-for-sterilizations-without-parental-consent-at-any-age/