Aspies For Freedom

I do worry about where all the research will lead, but the views I'm forming on the whole thing are more complex than most of you advocate.

First, to the extent someone becomes autistic because of adverse environmental reasons, ie things that weren't meant to be, instead of genetics, I could see wanting to reverse the effects.  This type of situation doesn't scream a clear, "this is who I am."  Instead, it's more what the person became because of what was not supposed to be there.  Age would play a factor, of course, and the level of self awareness.

Second, I wonder what someone very severely affected would say about being cured.  Those who gather in places like this are able to speak for themselves and know what they want.  Most of you can become, at minimum, self supporting in roughly the same percentages as the rest of society.  Some of you will use your unique talents to do amazing things.  Who would want to stop or change that?

But what of the Autistic who is so severely affected he will never be able to care for himself?  Who will require assistance with even the most basic needs of living for the rest of his life?  Who cannot communicate in any form and thus cannot share even the smallest wonders of what are in his mind?  If you could change things so that person could be self sustaining, shouldn't you want to?

Every therapy has the chance of being missused.  That has to be acknowledged.   But it doesn't have to be an all or nothing option.  Advocate for effective and positive ethical quidelines.  Make sure they know that most of you are quite happy and doing quite well, thank you.  Advocate for laws that will keep the treatments from being applied where they shouldn't.  And so on.

Anyway, stuff to think about.

I don't know where I would draw the lines, personally.  I don't have the information and expertise for that.  I just know that it most likely will have to be somewhere between the heartache of a parent who knows they will have to care for their child 24 hours a day until the parent dies, and the terror of an young Aspie or Autistic about to lose everything they know of themselves to a destructive treatment.

First look, first few pictures only (I've got two screens open):

I have a lot of trouble with the things they find so devastating.  Rocking and hand flapping - it may be odd, but it's not dangerous.  Why are they making such a big deal of it?  Same with the crunched sitting position.  I'll bet if her shirt were still big enough to pull over her knees, she would have (my son does that).  What is the big deal?  If the people working with her worried less about those things, and focused solely on the important stuff (like learning to use the bathroom), could she be much closer to being self-sustaining?

I guess this is where I want to start tackling the issue.  NT's need to decide what really is important and what is not.  Those pictures place a lot of emphasis on things that are purely cosmetic.  The energy put into trying to get this woman to stop hand flapping - isn't that a waste?  Now, for someone more advanced who has mastered other skills, maybe you move onto that, but for someone who hasn't?

Second half:

Ohhh ...   NOW I see the counter attack.  LOVE the T shirts!  This is fantastic information.  But how many people get this far?  Don't expect the NT community to read past the first few screens.  You see, we like to think we know what we're looking at from the first impressions.  Note my instinct to jump right in with comments only 4 or 5 pictures in ... I almost didn't read the rest.  We know that we may miss out that way, or not get the full picture, but life is busy, got to move on (and, seriously, I do, since I'm goofing off at work at the moment).

Overall:

I don't think we're ready to know where to draw the line, on who to treat and who not to treat.  Children born Autistic today have avenues open to them unheard of 20 years ago.  They are being raised differently, and there is so much more understanding out there.  If I were trying to raise my son 20 years ago, I wouldn't have all this fantastic internet information to help me understand him.  I would only have my instinct.  Would it have been good enough?  I can't say.

My son's school hosts a special county day class for severly affected autistic children.  You can tell they are different, but none of them fit the vision most people still hold for severe autism.  After a function, one mom told me she was totally stunned to discover one of the kids at the table she sat at (with the childs mother) was from the special day class.  The child had spoken with her mother and generally acted just fine.

As the site says, what a different world if we react to what really is instead of what we think is.

Thanks.

I'm still going to claim the gray area on the overall issue, though.  Life is gray to me.  No issue is one size fits all.

Unfortunately, a great many of us are discriminated against because of our appearance and body language.  About the worst people in the universe are the ones who THINK they know when people are lying, nothing any of us says will ever be accepted by such people, and most of them are job interviewers.  In addition, some of us have difficulty changing our appearance, editing hair and clothing styles, and standing in a way that looks and feels natural.  I can never be sure about how I'm walking, I used to be very self-conscious about it and would jog everywhere to hide it.  Unfortunately, you can't jog into a place of business with an application and expect them to do anything other than throw it in the trash.

EDIT:  It's the same with my normal walk, I looke like a slouch; I've been told over and over again how I should change my clothing, my hair, my posture, but no matter what I do to any of it, it does no good.  

It's easy to say Aspies and HFAs don't have any difficulties, but for many, the only hope is to get accepted before one is even seen.  It requires a lot of luck, in my case it was knowing my boss for ten years before I sought employment.  Not everybody is that lucky.

Hello Tunnelblick, All, ici Ilja,

Well, I checked it out & I must say I think it's good & positive enough to link it in my List Autistic Bookmarks. The first 10 pages could be a little misleading, I think it's ment as a parody or metaphore, but after that it's a total different story.

About Casanova: I corresponded last year a bit with him via the online Awares conference, & he stroke me as a reasonable scientist who's goal is to help people with Autism. He even told me on one of my comments about microcolums that in his environment some of his non-Autistic co-scientists had those microcolums.

I guess he's maybe is one-sided or mis-interpreted by the interviewer, but You never know with NT's, thus I keep my eyes open in case he goes the wrong way.

Ilja
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Hello All, ici Ilja,

Well, I think this discussion drifts on some wrong assumptions. Therefore I putted my correspondence with Dr. Manuel Casanova from the Awares Conference 2005 on my website. It's unedited, from my first reaction after his paper about minicolums came online. I can't send anyone directly to the Awares Conference Archive because login is required.

I have left his paper out, besides it's very long it could be copyrighted & all posters seem to know where it's about.

I will also try to invite Dr. Manuel Casanova to respond on the commotion invoked by this newsarticle.

Dr. Manuel Casanova versus Ilja on Awares

Ilja.
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Hello Sophist, All, ici Ilja:

I added the ftp-link with the copy of this research paper in pdf-format under the copy of my correspondence with him (in my previous reply). It's pretty technical IMO & 25 pages long.

Have fun with it, I'll be busy trying to invite him to explain it here himself.

Ilja
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Hi,

Thank you for inviting me to participate in this forum.  I should probably start by saying that I was misquoted in the TV interview.  The object of the same was to publicize a recent finding to appear in a neuropathological journal.  The interviewer diverted the focus of our conversation in thinking that it was more interesting that I was helping fund a therapeutic trial.  Otherwise I never said that I was getting ready to wipe out autism.  The attribution should go to th reporter. I never said most of the statements in that release, they came from the publicist who was there with me.  

We presently have close to 100 patients institutionalized within our state hospital who fulfill criteria for the diagnosis of autism.  Some have been there for a few years, others for a few decades.  They do suffer from seizures, mental retardation and other comorbid conditions (e.g., tuberous sclerosis).  Otherwise we follow over 200 autistic patients in clinic who are looking for help for varius reasons.  Some are incapacitated by heightened sensory perception, they get confused, overwhelmed, even delirious.  My intent is to help only those in need... not to change a way a person thinks or who he/she is.

I have written a paper in paymans terms about our research.  I will gladly send it as an attachment to anybody who emails me (m0casa02@louisville.edu).  I would certainly enjoy any criticisms of the same.  Otherwise our latest publication can be obtained via free online access via pubmed and the proposed intervention can be  downloaded from our FTP site:    ftp://fornix.louisville.edu/pub/05research-plan.pdf

Let me know if I can be of any additional help in clarifying my statements :grin:

Best regards,

Manuel

Dr. Casanova, I greatly appreciate your coming to post and thank you for your insights and time.  As a parent of a Aspie child, I still have a lot to learn, and but I've come to appreciate the discussion on what autism and aspergers are, and the consideration of who and what might or should be treated.  I see a lot of unrealistic parents out there, and what I feel are questionable experts promising to help them, but I also see a lot of people who are trying very hard to do the right thing.  The right thing isn't always clear, and no one here holds the handle on it any more than anyone else.  The dialogue, though, is a fantastic place to start.  Thank you VERY MUCH for being part of it.

Debbie

PS - This can be a tough forum.  Don't take it personally.  Just use the information you will gleam from that wisely.

Hi,

Thank you for your thoughtful response  My initial training was in Neurology.  Shortly before finishing my residency training I realized that I wanted to do research and decided on pursuing further training in Neuropathology.  I practiced Neuropathology within two medical examiner settings and several different hospitals before spending 5 years at the NIMH in a Psychiatry Research Unit.  This background may explain my emphasis in postmortem studies. In this regard I have examined the specificity of our findings against possible confound of comorbid conditions often found in patients with autism.  We have studied Down’s syndrome as a confound for mental retardation.  We have also studied several other conditions that manifest autistic-like behaviors, e.g., tuberous sclerosis, rubella babies, and Rett syndrome.  The only condition that was similar in terms of our minicolumnar findings in autism was our Asperger cases.  In this regard the pathology was less pronounced and markedly improved with aging.  All of these findings were published in refereed journals or book chapters.

Our initial findings was that minicolumns (a basic unit of information processing) were smaller and more numerous in patients with autism.  Minicolumnar shrinkage was not equally distributed but rather affected the periphery of the minicolumn.  Minicolumns are constructed like conductor wires where information flows through the core and is kept there by insulation.  It seems that in our patients this inhibitory surround was at fault thus allowing for a stimulus to diffuse and kindle adjacent minicolumns.  The end result was an amplification event, a hyper excitable cortex, and the presence of seizures.  The finding explains many events that patient may pursue in order to desensitize themselves, to look for coherence.  Correcting this amplification targets cortical hyper excitability, NOT the way a person thinks.  However, many people believe that certain behavioral abnormalities may be the end result of this amplification event. As an example, for some patients looking at a face is like looking directly at the sun. It conveys too much information.  This may impede socialization.  

No, I am not afraid of giving up any secrets to a proposed therapy.  I have made the details about the same available through an ftp server to anybody who would like to read more about the same (ftp://fornix.louisville.edu/pub/05research-plan.pdf)
My only regret is that the document is a little bit technical.  However, I am open to criticisms.  

The proposed therapy is based on the fact that the inhibitory surround of the minicolumn (adeptly called a “shower curtain” of inhibition) is comprised of many fibers that run perpendicular to the surface of the cortex.  There is a principle of magnetic induction of electricity that says that by flipping a magnetic field, electricity will be induced in a conductor at 90 degrees to the same.  I think that by applying this principle (using a machine called transcranial magnetic stimulation or TMS) we can selectively increase the inhibitory fibers at the periphery of the minicolumn.  The technique is quite safe, has been tested in children, and has very little in terms of side effects.  You can read more about the same from the FTP site previously mentioned.

One of my daughters suffers from alopecia universalis and a polyendocrinopathy.  She was diagnosed at three years of age.  What bothers her most has been lack of hair.  This may explain many of the links and information that I have posted in my personal web page (http://136.165.150.3/people/casanova/index.html).  A long time ago I decided to take a militant approach against the condition, including the creation of an outreach program for children and a FAQ that would document everything that was known about the condition in layman’s terms.  I do understand and empathize with the plight of parents and their children.  I do not take things personally.  I welcome criticisms because it signifies that people are thinking, acting, and taking an informed stance regarding something that occupies an important part in their lives.  I only try to provide information and clarify misconceptions attributed to my person

Best regards,

Manuel

Hello Manuel, All, ici Ilja,

Wow! Glad to have You here & even registered as a member, & I even didn't start to write the email to invite You! I suspect Bonnie or Amy did... |-)
I knew You bin misinterpreted.

Just finished yesterday the pdf proposal. I like the idea of transcranial magnetic stimulation (TMS) & repetitive transcranial magnetic stimulation (rTMS). I think I can explain a little bit how it works to Sophist who stated specific questions about this technique, in common English as far as I'm able as a Dutchmen. ;-)

It looks & sounds a bit like science-fiction, if anyone ever seen an episode of StarTrek & watched the shipdoctor at work, You know sometimes i.e. a "epidermal regenerator" or "cortex stimulator" is used to "heal wounds".  You can also picture it like an ultra-sound echoscopic apparatus used on pregnant women, with the only difference the TMS uses magnetic field pulses to stimulate particular brainwaves.

I found a picture of the Magstim 200, the 220 is not listed, on the manufacturer's website, this is how it looks:

Any critics? Yeah, my impatience, it takes almost 4 years to complete this experiment before it's sure it can be beneficial for Autists, however it's already in use on other neurological disorders like depression, obsessive-compulsive disorder & schizophrenia.

Sophist: If You have trouble reading pdf files, it's possible to zoom in up to 6400% if You want.

Manuel, great to have you here so You can speak for Yourself.

Ilja.
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Hello Manuel, All, ici Ilja,

First: ThanX You took the time to hang out with us & clear some things up.

I would have write a lot more if I could, but I injured my wrist about a week ago. When I try to type with my good hand I automatically used my injured hand & everytime almost past out in pain. It's a little better now.

Otherwise I would have liked to respond on the brain circuitry & adaptation sooner. I've seen a docu once about people with severe epilepsy that had surgery to split their corpus callosum to prevent seizures. Without the connection between right & left hemispere they turned out to be able to write & draw with their left hand better then before using their dominant right hand.

About Einstein's brain: I've seen a docu about that on National Geograpic or Discovery a few years ago. I will look up what's still on line. Remarkable was that his brain didn't have a certain 'canyon' in the right hemispere, as far as I recall, I don't know the neurological correct name.

Note to Dogface: I understand Your concerns, but You could have tryed to read the whole thread before replying... ;-)

Ilja.
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   ^ ( Means: The Vulcan handgreet 'Live Long & Prosper' & it's very funny to use in real life: People who try to mimic it almost always have a difficult time performing this greet conscious, however they use the same gesture fetching a bottle & pour a drink, it's only logic... LOL )

ThanX! for the update, timstassen!

I'm living in The Netherlands, otherwise I had voluntered to try this!

Ilja. _\\//

I don't understand why people care about typos.  And I used to be a grammar nazi, too, until I saw the light of Jemima and became a descriptivist

Sorry, I didn't mean to call you a grammar nazi, I just find the concept funny.

Last I heard, Dr. Casanova was not discouraging parents from vaccinating their children.  

The title of the thread is a bit off.  Dr. Casanova is not as evil as the title of the thread makes him appear.