Wednesday, July 23, 2008

"Tolerating" Asperger's Syndrome

Someone left a comment on one of my Michael Savage posts saying "I don't think there is such a thing as ASD, its just a natural variation that is not tolerated by parents who want it easy."

I think they meant to say that they don't think Asperger's is pathological. In other words that it's not a "disease". Of course that would potentially put this person in the same camp as the "Neurodiversity" crowd and John Best won't like that I tell you.

I will tell you this though - Asperger's Syndrome is very real and can be VERY disabling.

No - I've never been able to get The Old Man an "official" diagnosis. From what I can tell, one of the symptoms of Asperger's Syndrome is a reluctance of the patient in many instances to have his or her atypical behavior labeled as being pathological - the result of a disease.

But I think such language as "natural variation that is not tolerated by parents" is language that is too trivializing.

Aspergian behavior is "not tolerated" very well by adult children of those afflicted either.

I'll give you an example. I was an only child but I have two first cousins who I am very close to. One of them got married in Middletown and I got The Old Man to go to that one by arranging for one of the very few people he trusts outside the family to pick him up and take him home after the ceremony because he can't tolerate the "noise" and activity of a wedding reception. A couple of years later my other first cousin got married in Dayton and The Old Man freaked. I mean straight out freaked. If I understood him correctly he was saying that there was no way he could go as far as Dayton out of the mortal fear that he was going to get stranded there. He also was terribly upset that he had gone to the first wedding because now he was afraid he would think he was showing favoritism towards the cousin who got married in Middletown.

Now, I never thought I was going to get married myself, but Mrs. Axinar had other ideas. We planned on getting married in Key West and then having a reception here. Obviously The Old Man would be unable to travel as far as Key West. He can't even go to Dayton any more he's so freaked out by travelling. And of course he couldn't make it to the reception because it would have been too loud for him.

I was really torn by what to do.

The only logical thing I could think to do was to not tell him we were getting married. I figured if I didn't tell him, he'd have no decision to make and it would be physically possible for the circumstances to come about that my Old Man was SO f*cked in the head that he would not show up at his own son's wedding or reception. If he didn't know, he couldn't diss me.

Of course particularly my wife's family started freaking the f*ck out that I wasn't telling my dad. Then the peanut gallery started chiming in that my in-laws might interpret this that not telling my dad would be interpretted by my in-laws that I was "ashamed" of them or something of the sort.

I swear to God I got to the point that I thought of calling the whole thing off.

Pretty much you don't get much more Aspergian than my Dad without needing to be locked the f*ck up for the rest of you life, and you don't get much more neurotypical than my wife and her mother without needing slapped silly on a daily basis and how in the world I could do right by everyone simultaneously I still don't know.

But Asperger's is real - very real. And, in some ways, it's almost WORSE than severe autism. At least with more severe autism people tend to NOTICE that something is wrong. With Asperger's you can be very, very impaired in all sorts of relationships, but because you may be very articulate and have a very high IQ, people tend not to even take you seriously ...

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Monday, July 21, 2008

Michael Savage Says He Was Taken Out of Context

Well, as I tried to explain in the post I tried to leave through Jott, Michael Savage was trying to say that his comments about autism were taken out of context - that he merely meant to say that there's a tremendous amount of overdiagnosis of autism going on.

Uh huh.

Right.

He seems to be saying that autism is being overdiagnosed for the same reasons ADD and ADHD are being overdiagnosed - in order to give the drug companies the opportunity to push their wares on kids as young as 4.

Interesting idea - but I was unaware that the first-line therapy for autism was drugs.

Now, I suppose there may be other lines of business that are improved by diagnosing more and more children with autism.

Actually, at this point, I suppose I need to get educated.

Yes, I'm one of those types quick to label my own father as having a scorching case of Asperger's, and myself with something even milder.

However - fill me in -

If you have a child who has been diagnosed with autism, particularly in the last few years, what symptoms got your child's physician thinking along those lines, and what course of treatment had your child's physician recommended?

For those of you uncomfortable even in leaving an anonymous comment here, please send me an email at axinar@gmail.com.

Related:
Michael Savage defends autism remarks - Newsday.com
Radio host Michael Savage incites protests with autism comments - NY Daily News
Protesters Decry Radio Commentator Michael Savage's Remarks About Autism - Fox News
Apology to Michael Savage - Hating Autism
Savage Stands By His Autism Slam; Invites Parents to Call In And Speak Their Mind. Will You Accept His Invitation? - Lisa Jo Rudy @ About.com

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Sunday, July 20, 2008

About.com Blogger Says "Don't Waste Your Time On Savage"

Whilst reviewing my fellow Google page 1 hits on various "'Michael Savage' +autism" type Google searches, I stumbled across a certain Lisa Jo Rudy who wrote a piece on About.com that basically said, "Don't wast your time on Savage.". She seems to be criticizing the efforts, in particular, of a blogger named Cindy Sue Causey who put together quite a good piece on some of the planned Michael Savage protest events.

Lisa Jo Rudy seems to think that the time and effort people are putting into protesting Michael Savage would be better spent spending time with one's autistic children.

Well ... maybe ...

No, I don't think an UNDUE amount of time need be put into Michael Savage, nor do I think he should be taken off the air.

I do, however, think that, yes, a great deal of attention and scrutiny needs to be brought to this man.

Why?

Because he's willing to say the things that certain other very powerful people don't feel comfortable saying.

Michael Savage's comments need to be taken VERY seriously and people need to make it a point to as many people as possible just how wrong Michael Savage is.

Although - I'm beginning to wonder if Michael Savage's rantings might actually have been a backfire of his reading some of the works of John Best.

You see - if I understand this correctly, John Best is convinced beyond a reasonable doubt that, in particular, there are two young ladies in New England who are very vocal on autism issues who are absolutely, 100%, utterly fraudulent. This of course in spite of the fact that at least one of the two young ladies has posted her medical records in more detail than the average Presidential candidate.

But, let's entertain the notion for just a second that these are the two best actresses in North America. That still doesn't account for certain two-year olds I've run into who have tempers so bad they will beat their head bloody on the pavement and, yes, John Best's son, Sam.

In fact, John Best himself left a comment on my blog saying so much as Michael Savage was mistaken ... that there are some "fakes" and some very real cases of autism.

Actually, as psychotic as this suggestion may sound, I'm thinking the only expedient solution to this problem is to try to get John Best and Michael Savage on the phone - or - better yet - get them together in person. They both seem to have a similar view of the world. Perhaps John Best could at least convince Savage that Best's own son is autistic. I'm fairly sure Michael Savage would never doubt Best's ability to be a harsh disciplinarian and to try every draconian "training" method that has ever crossed the imagination of humanity.

Yes ... I'm thinking that might be what we might want to try, as crazy as it sounds.

We need to get John Best booked as a guest on Michael Savage's show ...

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Saturday, July 19, 2008

Michael Savage On Autism


Oh my God - it's as if John Best had gotten a nationally syndicated talk radio show.

Sometimes people wonder why I post stuff like this.

As a matter of fact, sometimes I get frantic emails from people asking why I post stuff like this.

Answer: ALOT of people think this way who make MAJOR business decisions (including hiring decisions) but who make deliberate attempts to keep as low of a profile as possible.

There are a great number of people on this planet who think that every action is very carefully acted out. Perhaps they have good reason to think that way because every action they take and every statement THEY make is very carefully crafted in an attempt to communicate some sort of message.

It's almost as if they're in a stage play 8 - 16 hours/day 4 - 7 days/week. I mean, if you're in a run of Hamlet you do put on period clothing, heavy make-up, and, as DeForest Kelly once said, if you're doing your job right you DO experience some of the thoughts, feelings and motivations of your character.

On talk radio or TV your "character" can have life for four hours or so. For instance, as I've been thinking of doing for quite some time now, although Brian Thomas on the 55KRC morning show sounds like a very nice, professional young man, he just doesn't sound credible. No, I don't think he's secretly a card-carrying member of the ACLU, I don't believe he is personally ANYWHERE as conservative as he tries to sound on his show.

Morton Downey, Jr., God rest his soul, ADMITTED in an interview that the person he portrayed on his WOR show was a character.

But I cannot, for the life of me, figure out how people can possibly stay in character 8+ hours/day 260+ days/year.

However, apparently there are people who can do just that, because when they do see behavior associated with Autism somehow they automatically assume it is some sort of "act" carried out in the attempt to get something they might not otherwise be entitled to.

What of course is absolutely fascinating about some of this criticism is that, yes, okay, bring on the flaming emails, but it is POSSIBLE for a sufficiently motivated 30-year old adult to "fake" being unable to speak, unable to successfully use the facilities on a consistent basis, and unable to cook/clean, etc., in order to avoid having to put up with the b*llsh*t that goes on in pretty much EVERY work place, but how in the WORLD would a TWO-YEAR-OLD who gets so angry and frustrated that he beats his head on the pavement until he bleeds be "faking it"?

I suppose Michael Savage would propose that the two-year-old be beaten senseless until he stops "acting out".

No ... autism is real, people ... and it takes many forms ...

Related:
Savage on autism - Media Matters
Michael Savage Autism Apology! - AutismParents.Net
Michael Savage: Autism is a fraud (yeah right, idiot) - Big Blue Wave
Idiot of the Week: Michael Savage - Blogging Blue
"I hate the Michael Savage Show." - Marcia Mickelson
Radio talkshow host call autism a hoax and fraud - The Chronicles of C.J.
Action Alert :: Talk Radio's Michael Savage Trashes Individuals With Autism.. - Six. Almost Seven..
Savage Successfully Sucks Time, Money and Energy From Autism Community - About.com Autism Blog

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Saturday, June 28, 2008

Quote Of The Day: AnneC On Team Sports

This quote from AnneC's "Existence Is Wonderful" I thought really hit the nail on the head vis a vis the Autistic Spectrum experience with sports:

"I was horrible at sports. Really horrible. I found the 'team dynamic' incomprehensible to begin with, to the point where I often had to be reminded which team I was on."

Yep ... I'd have to say that sums it up pretty well.

Of course what's quite frightening is that SO much of the modern business world is based on sports analogies, it's quite remarkable that, even though those with "high functioning" Autism and Asperger's can be enormously intelligent, that intelligence can't be put to practical use in many professional settings as the neurotypicals pick up cues from people on the Autism Spectrum that are perceived as "unsportsmanlike" or something of the sort.

And perhaps that's why some with autistic traits tend to gravitate more towards collective forms of organization. If you can't tell the teams apart, everyone must be on your side, right?

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Tuesday, April 15, 2008

Amanda Baggs = "Vegetative State"??

Now, when you have a Google Alert set up for "Amanda Baggs", admittedly you're taking your life in your own hands, but this one cracked me up:

There's a presumably very small "mainstream media" outlet by the name of The Tullahoma News (TN) that has a staff writer by the name of Gina Gallutia who was apparently assigned a story about Education majors at the Motlow State Community being introduced to a 10-year-old with autism as part of their training to be teachers.

Of course as autism is increasingly prevalent DESPITE the removal of mercury preservatives from most vaccines, having some formal autism training for future teachers is not a bad idea at all.

However, I'm thinking Ms. Gallutia needs some autism training herself.

She writes of Temple Grandin, "For instance Temple Grandin has learned to deal with the devastation of living with autism and has progressed through the education system and is now a professor. She describes autism as constantly flipping through a visual file."

"Devastation."

Well, sounds like John Best must have gotten to Ms. Gallutia too. And I'm pretty sure she's trying to describe how Temple Grandin speaks of "thinking in pictures" rather than words.

The beaut of this article is this one though - "Or Amanda Baggs, who is seemingly in a vegetative state, uses a typing device and has gone through college."

Now, it's a foregone conclusion that there's a great many descriptions, many of which are not necessarily complimentary, that have been applied to Amanda Baggs, but I'm thinking "vegetative state" is not one of them.

Maybe she's thinking of some of the staring episodes Amanda has described having from time to time?

Other than that, however, I can't recall one video, blog entry, or Usenet posting that would imply anything other than the fact that she is largely in constant motion 24/7/365.

Oh, yes ... unfortunately there's no email address or other obvious way to contact Gina Gallutia, but I'm thinking we need to take HER on a little adventure of "Autism 101 Featuring Amanda Baggs" ... :)

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Monday, April 7, 2008

Autism-Vaccine Quote Of The Day

From the annals of Amanda Baggs' #1 Fan:

We have a comment from someone using the name "Rachel" who poses the query, "I just have a question - I am being sincere - since you obviously know more about this than me. My son is 5 and is autistic. He was adopted and never recieved ANY immunizations as an infant. Are you saying that he can not have autism? Then what is wrong with him?"

Boy ... now that's a GOOD question, isn't it?

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Friday, April 4, 2008

Autism-Vaccine / Neurodiversity War Getting UGLY

Well I knew this was coming.

It looks like one of the sets of parents of an autistic child who are CONVINCED that mercury-derivative vaccine preservatives are responsible for their child's condition are now SUING Kathleen Seidel of Neurodiversity for having described a suit filed by the autism parents against pharmaceutical companies as "a hydra-headed quest for revenge, for compensation, and for judicial validation of autism causation theories roundly rejected by the greater scientific community."

(4/5/08 Correction: Kathleen Seidel is not herself being sued, but rather is being subpoenaed as part of another case.)

Sounds like a Constitutionally protected opinion to ME.

Although it sounds like what's going on here is that the "Mercury Crowd" is trying to find out if Neurodiversity is being bankrolled by the government and/or the pharmaceutical industry.

On the one hand I think it's absolutely ridiculous the lengths people will go to in an attempt to discredit a BLOG.

On the other hand, maybe it would be for the best to air some of this stuff in open court in the light of day.

If anyone involved took an HONEST look at all the available evidence, one just MIGHT find out that the ACTIVE ingredients of these vaccines might IN SOME CASES contribute to autism symptoms.

Or they may not.

Seems like everyone involved on both sides has such an axe to grind and are so clearly emotionally and cognitively impaired we may never know the truth about what's going on.

Oh, and *I* have been DISSED AGAIN.

In the Kathleen Seidel subpoena in Sykes v. Bayer, down at the bottom of the second page there is a request that Kathleen Seidel produce any communications between Neurodiversity.com and a MASSIVE collection of of Autism and Asperger's related organizations and web sites including Aspies for Freedom, Autistics.org, Ballastexitenz (Amanda Baggs), Hyperlexia, and Neurotypicals Are Weird, but there is not ONE mention of Axinar's.

I'm insulted!

Oh, that's right ... I'm willing to entertain both sides of the story on just about anything so that makes me not even worth being even MENTIONED in a federal case ... :)

Related:
Vaccine-Litigant Thuggery: Subpoenaed For Blogging - Popehat
Kathleen Seidel Slapped With Unconstitutional, Illegal, Barred by the Journalist’s Privilege, and Needlessly Invasive Subpoena - I Speak of Dreams
More legal thuggery, this time against Neurodiversity.com - Respectful Insolence (Science Blogs)
You gotta fight for your right to blog - Clotted Cognition
Vaccine lawyer subpoenas Kathleen Seidel - Overlawyered
Blogger Troubles - SLAPP - Left in Alabama
Kathleen Slapped-Blogs Slap Back - Club 166
How to Treat a Bully - One Dad's Opinion
Bloggers As Targets - Legal Schnauzer
Implication by Association? - ASD :: Commentary on Autism, Disability, and the World
What a Web of actional links we can weave - The Nashua Telegraph
Cyber-Slapp - The Wall Street Journal
Blogger Kathleen Seidel Fights Subpoena Seeking Information About Vaccine Litigation - PBS MediaShift Idea Lab

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The Neurodiversity Wars

At some point after In My Language started making the rounds in the blogosphere, I put up a Google Alert for "Amanda Baggs". Usually after a TV or magazine appearance, there will be a flood of blogs and board messages that say something to the effect, "I just saw the most amazing video."

However, there was one exception - an individual who INSISTED that Amanda wasn't autistic at all and was pretty much faking.

At first I didn't pay any attention to this individual as he was so crass and rude that he frequently gets thrown off of web sites.

However, after a while it eventually started to hit me that, yes, having had a bit of experience myself with hyperfunctioning neurotypicals, the issues he was bringing up WERE in need of some additional explanation.

Sanjay Gupta mentioned this in Finding Amanda and apparently the issue was addressed as far back as February, 2007 by the Managing Editor of CNN Medical News, Tim Langmaid who said, "We spoke with her health care providers and reported what they told us. Also, Amanda shared her medical records with us from various providers diagnosing her as autistic. We are not in the business of diagnosing people's medical conditions. But, as in all of our stories, we conducted our own independent investigation, spoke with expert sources and reached informed conclusions."

Amanda herself addressed the issue in a comment to a recent post on her blog. So yes, I'm thinking at this point is that the reasonable consensus is, yes, these questions are legitimate to ask, but, at least per current usage of the word, Amanda Baggs is a person with autism.

However, I'm discovering the issue goes quite beyond Amanda and her #1 Fan.

As I suspected, other, far less rude individuals are posing similar questions.

A gentleman from New Brunswick, Canada named Harold L. Doherty stumbled across an article about a young man named Alexander Plank, founder of Wrongplanet.net, who is a card-carrying Asperger's case and apparently doesn't want to be "cured".

Mr. Doherty responded in his blog by saying "Alex Plank doesn't speak for my son."

Now, from the Alex Plank article it's not real clear exactly WHY he has been diagnosed with Asperger's, but my guess he may be suffering from "bright kid syndrome". Yes, very often somewhere around that 130 - 140 IQ line, as more and more brain is taken up by extraordinary skills like memory and computers, "ordinary" capabilities like socialization start dropping off.

From what I've read, I think Harold Doherty has a very legitmate right to ask the question whether or not the merely geeky and the severely disabled like his son should be considered to have manifestations of the same disorder.

However, in his piece, Mr. Doherty actually goes on to produce an example of how, if you insist on thinking of Asperger's as a completely distinct disorder, hopelessly intertwined these two conditions are.

"Occasionally he bites himself and he has put his hands through windows and smashed holes in walls."

Uh, dude ... The Old Man passed the bar on the first try. *I* have an internationally recognized blog and, unlike either Amanda OR her #1 Fan, can pick up the telephone and order pizza and/or lobby state and federal legislators - sometimes in the same phone call. We've both pretty successfully mastered this using the restroom bit that seems to cause everyone so much stress. HOWEVER, we have BOTH made fast work of windows and walls in moments of frustration and have found all sorts of other troublesome ways to self-injure. It comes with the M.O.

I'm not entirely sure the Neurodiversity crowd really intends to say that NO treatment should be worked on. As a matter of fact, it's arguable that the staff accoutrements of say, Amanda Baggs and Sue Rubin ARE a form of treatment.

I think what they're saying though is that you HAVE to tone down some of the acrimony here, people.

I know you come by it honestly. Some of you have several very unfortunately neurotypical tendencies and I KNOW your severely autistic kids push your buttons in the same way as neurotypicals who are deliberately trying to make you upset. Believe me - I've noticed this effect in Mrs. Axinar ... :)

But, yes, the chelation business sounds a little scary and the "clicker" training business sounds downright dehumanizing. It sounds like something you would do with a dog or a horse [[ahem]].

Perhaps some sort of truce would be in order on the issue at hand. Despite our often excellent writing skills, even we mega-high functioning types have judgement impairments at times. Yes, we can negotiate traffic and drive all the way to Oprah, but we don't often see an issue completely clearly, and, yes, within the limits of the law, we should ultimately respect the wishes of parents who want to try to aggressively correct their own children's autistic behavior.

But also the parents of autistic children need to respect the rights of autistic and Aspergian adults to choose their own course of care and recognize that sometimes things just don't come out the way we intended ...

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Wednesday, April 2, 2008

Autism Caused By Measles Organism?

There's a great article running on CNN about a 13-year-old autistic girl named Michelle Cedillo that seems to be painting the picture, as I have been beginning to suspect, that it is not the MERCURY derivatives in the vaccines, but quite possibly the MEASLES ORGANISM ITSELF that is causing neurological damage in some susceptible individuals.

In fact, I got The Old Man on the phone and it turns out that HE had the measles TWICE as a kid but HIS BROTHER ONLY HAD THE MEASLES ONCE. My uncle never had the "German Measles". The Old Man has a FLAMING set of Asperger's symtoms, but my uncle is almost completely normal.

Very, very interesting ...

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Friday, March 28, 2008

Amanda Baggs - Big Pharma Advocate?

Well, JUST when - I suppose out of sheer boredom more than anything else - a person is getting ready to say, "You know, I still think this guy is nuts, but I can see how someone might ask some of these questions upon first being exposed to this material," that person goes and displays to the world that, in addition to being unbelievably rude, his cheese is teetering ominously over the edge of the cracker.

Get this - if I understand this fool's last posting correctly, he seems to actually be saying that Amanda Baggs is merely "playing the part" of an autistic person in order to - get this - promote the agenda of the pharmaceutical companies.

WHAT????

I suppose the thinking goes something like this if you can call it thinking - he seems to be saying that the pharmaceutical companies put Amanda Baggs up to the task of promoting a viewpoint that autism is perfectly okay and people should stop trying to find a cause or cure, and, in so doing, promote the notion that vaccines are perfectly okay.

Oh, yes, Amanda's #1 Fan has lost it. Utterly.

I'm beginning to suspect Amanda's #1 Fan is autisic himself.

Talk about narrow interests.

Aside from a few brief mentions about horses, it seems this fool's entire life is consumed with the notion that his son's severe autism was caused by mercury derivative preservatives in vaccines and that Amanda Baggs is single-handedly attempting to cause deliberate harm to his son by advocating that his son NOT be treated like a horse.

[[Light bulb turns on over the Axinar's head]]

AHAH!

Although I haven't found anything to indicate his level of involvement with horses, it's possible that Amanda's #1 Fan TRAINS horses and might very well figure that such techniques might be effective on autistic humans.

Actually, the more I read of his spew, the more I REALLY begin to believe he is autistic himself and that his own parents brutalized him until he thought he wasn't. Unlike Captain Picard, he finally DID see five lights.

Now he's conditioned to think that ANY sort of autistic symptoms are right up there with demonic possession or something of the sort.

The government (and Amanda Baggs apparently by his thinking) have pretty much PUT A CURSE on his son and he seems to be on a quest to exorcise this curse.

And of course he's super-paranoid - even thinks Google is out to get him when there's not a shred of verifiable evidence that they have done anything against him at all.

You know, at the end of the day, I feel sorrier for him than I do for Amanda. Yes, not being able to consistently negotiate the ladies' room is one of the biggest indignities a human being can be made to suffer through, but I cannot imagine what it would be like for one's ENTIRE life down to the last second to be consumed with such intractable hatred ...

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Thursday, March 27, 2008

UK Woman With Asperger's Has Baby Seized By State

Oh here's one that ought to make your blood boil - apparently in the UK having Asperger's can be grounds for having your baby snatched by the government.

The story is that a 21-year-old woman with Asperger's Syndrome had her baby taken from her IMMEDIATELY after giving birth because, if I understand this correctly, the government agencies there believed she was at risk of getting post-natal depression, and that there would be a distinct chance she would neglect her baby.

Now, I have never been able to quite figure out if my own mother is on the autism spectrum. She certainly has "malfunctioning" social skills, but she has usually be diagnosed as having Borderline Personality Disorder.

However, I can certainly say my mother has a great many things in common with people with Asperger's. She's very intelligent. She MARRIED someone with an evident flaming case of Asperger's. She's quite outgoing but she is absolutely vacuously clueless about the effect that she has on people. She has a VICIOUS temper and she analyses the hell out of everything.

Now, tying this in with the UK story - yes - someone with such tendencies CAN get a nasty case of post-partum psychosis. My mother had a beut of a case - as I understand it, trying to assasinate the poor little Axinar with straight pins and then proceeding into a 48-hour screaming session. I'd presume this classifies as "neglect".

However, are such dangers justification for snatching someone's kid?

I don't think so.

Are they justification for providing such a person with extra support?

Oh, absolutely.

But heaven forbid we should do such things.

Such things make too much SENSE ...

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Sunday, March 23, 2008

"I Don't Want To Be This Way But I Am"

Not meaning to give the "chelation" crowd any more ammunition, but I did stumble across something that REALLY caught my attention.

CNN in their continued interest in autism stumbled across a 13-year-old girl who I presume most people would consider having been authentically autistic since age 2 or so. They are running a video showing how she is beginning to generate quite complex writing with the help of specially equipped computers.

She is shedding some light on some of the physical "tics" - because, for instance, she sometimes feels like her skin is on fire.

But - and this almost knocked me out the chair - she wrote, "I don't want to be this way but I am."

Oh wow.

Yes ... looks like some people with autism would like to be ... well ... less autistic.

Others, however, do not ... and will fight you tooth and nail to be allowed to be themselves.

I don't think I fault either group.

It's a little like when we get to talking about end-of-life issues. Once someone has expressed a clear preference one way or the other on their wishes vis a vis "heroic measures", they should be honored. If someone has clearly expressed they want to be a "full code" you should throw the works at them until they either come back or don't. And, similarly, once someone has clearly expressed that they want to be a "no code" you shoud ... well ... you should put them down if that is their preference, but clearly that's another topic.

Each has his or her own preferences and that should be respected ...

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Saturday, March 22, 2008

"Quirk" vs. "Disorder"

Occasionally one's Google Alerts for "Amanda Baggs" turn up something BESIDES raving lunatics.

For instance, there's a young lady who calls herself Susan E. who I believe is talking about her son Isaac who, if I'm making this out correctly, has been diagnosed with high-functioning autism.

She writes of some of her son's "quirks" and writes, "And so we are back to the eternal question of what is 'quirkiness' (lovable eccentricity) versus 'disorder' (off-putting)."

Which of course goes back to my observation of autism being a condition with two "victims" - the "patient" and the "observer".

What fascinates me about this is that it seems people have entirely different reactions to other dissabilities.

For instance, Amanda Baggs' #1 Fan and his followers, given an entire menu of issues associated with some of their severely autistic children, seem to bring up one first that they have some concern over who will change their children's diapers once they're gone.

Well, would not they face a similar dilemma if they, God forbid, had a child paralysed in an auto accident or something of the sort? Might they not face such a challenge with somewhat more grace than their current situation that has their child afflicted with a condition that just happens to induce [[gasp]] socially unacceptable behavior?

A four-year-old with high functioning actism is practically a blank slate. Is he going to do "quirky" things for the rest of his days? Quite possibly. But keep in mind that one of those "quirky" things he might do is leave voice mail messages on his middle-aged SON'S voice mail prattling on about running short on paper towels when he's already stockpiled about 50 rolls.

High-functioning autism and Asperger's is like a box of chocolates ...

Well ... you know the rest ...

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Thursday, March 20, 2008

Neurodiversity

In my continuing pursuit of notions of "opposites" in the autism arena, of course, somewhat at random, we start with Amanda Baggs as ostensibly the "most" autistic person currently getting substantive press coverage, and then move to a somewhat vocal band of individuals who are mad as hell at her.

Now, although I'm still collecting information on this topic, if I'm reading this correctly, the detractors of Amanda Baggs have a name for THEIR enemy - the "neurodiversity" movement.

There is a reasonable amount of blog traffic on this topic, but I think the clearest explanation is on a post on Autism's Gadfly that says, "Proponents of neurodiversity cling to the ... notion that autistics need acceptance and not cure and that if society would only change to accommodate autistics, autism would not be a problem."

Actually I'd have to say this should not be all that outrageous of a statement.

After all, autism is a condition with (at least) TWO victims - the person suffering the autism symptoms, and the person WATCHING the autism symptoms.

Take Amanda's #1 Fan for instance. Now, this may be an unfair statement, but somehow I'm wonder if SOMETHING ELSE caused precisely the same symptoms in his son - say a freak traffic accident or something of the sort - although still facing many challenges, somehow I'm thinking Amanda's #1 Fan would just "deal with it" better.

Instead we get rants that make ME look like Miss Congeniality.

Yes, autism makes the OBSERVER of the autistic person ANGRY whereas numerous other disabilities don't - or at least not to the same extent.

Cases in point - upon warning my n'erdowell cousin-in-law that Asperger's runs in our family big time, he took on a somewhat aggressive stance and said, "Look ... if it happens, we'll take the necessary actions ..."

When my wife and my aunt come into contact with my Old Man they sometimes get downright frantic.

A trained representative of Hamilton County's Adult Protective Services, however, when exposed to my dad hardly blinked.

So, yes, I'd have to say I do have some agreement with the neurodiversity movement.

Certain research into the condition should be continued. Over on another site someone was telling me that there is thinking that autism may be related to immunity issues.

Well, isn't THAT a co-incidence?

Do you think [[gasp]], it could be the ACTIVE INGREDIENTS in the vaccines that are contributing to autism?

However, at the end of the day, particularly with the adults, yes, the rest of us are going to HAVE to deal with it. Ultimately it is OUR problem - just the same that it is OUR problem if we can't deal with gays or Jews or even Joy Rolland ... :)

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On The Pursuit Of The "Opposite" Of Autism

As I've mentioned in the last few entries, a question formed in my mind recently - what is the "opposite" of autism?

If I'm picking up the lingo correctly from the autism community, the word they generally use is "neurotypical", but I'm pretty sure this is a euphamism for "normal" or "average", because of course these words in common usage are usually loaded with the connotation of "good" and "proper" and the like.

But I'm pretty sure that "neurotypical" on the true spectrum of behavior marks merely the mid-point - a set of behaviors that is neither particularly autistic, nor particularly anti-autistic.

Now where would one begin the pursuit of an anti-autistic? Well, one might try to think of someone who is hyper-social, very flexible to change, an impeccable dresser and NEVER gets angry EVER.

Of course there are numerous individuals that come to mind, but I got to thinking of another angle.

In the on-line world at least, it's arguable that the title for the highest-profile formally diagnosed autistic has passed from Temple Grandin to Amanda Baggs. Now, although obviously I am not completely up to speed on all the background in this community, one thing that strikes me as a fascinating difference is that Amanda Baggs has quite a throng of detractors, whereas I don't think Temple Grandin has any to speak of.

So might Amanda Baggs' detractors be the elusive anti-autistics?

Well, maybe, but almost immediately they themselves start to exhibit traits often associated with autistics.

The ostensible leader of the group, so far as I can figure out, has a severely autistic son and, per my analysis of the original "refrigerator mother" articles, someone with an autistic child is suspect not necessarily of bad parenting techniques but of HAVING AUTISM GENES HIMSELF.

And oh brother does this one put me in mind of some people I've crashed into in "high-functioning" support groups - getting thrown off message boards, going into death battles with Wikipedia and a whole list of other behavior that would likely get him shocked silly for a couple of days in a number of "behavior modification" programs.

And what has triggered this behavior? Believe it or not, if I understand it correctly, what I think he percieves in his own mind as a miscarriage of justice - that for some motive I don't even think I could invent in a bad sci-fi novel, Amanda Baggs and other members of the neurodiversity movement are conspiring to encourage government officials to keep autistic children in diapers for the rest of their days.

Now, just like Barack Obama recently had to attempt to clarify his relationship with his former pastor, Jeremiah Wright, and, yes, Jeremiah Wright's mouth, would someone from the neurodiversity movement care to step forward and make some sort of formal "Potty Policy" statement to clarify this issue?

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Monday, March 17, 2008

Have Hyperfunctioning Neuromediocrity - Will Travel

Someone under the handle "abfh" left and interesting comment that said they knew someone who really hated emails - that thought that his coworkers were "too lazy to walk down the hall to have a conversation."

This got me to thinking about the frequent neurotypical need for in-person interaction in order to conduct business.

It reminds me of a comment that I once heard - "If I could travel I could make twice as much as I'm making now."

Generally speaking, in any given group of professionals, those who travel the most are the highest paid.

Why should this be the case?

Well, I suppose the easiest explanation is that it's generally considered the case that the "mirror neurons" in people with autism spectrum disorders are somehow impaired. Much like a blind person sometimes developing much more perceptive hearing, people on the autism spectrum often develop very strong abilities in OTHER forms of communication - 100+ words/minute typing abilities, etc.

But in the neurotypical I get the idea that certain things aren't "real" to them unless they're presented in person. And they don't seem to be sometimes all that much interested in the technical aspects of whatever is being presented to them. They seem much more interested in how the person presenting the material "projects".

Neurotypicals get obsessed with the STRANGEST things - as the creator of the Dilbert comic strip has often pointed out, certainly it can be the case that some management positions are only available to people with a certain style of hair. I've also observed that there can develop an almost obsessive concern with clothing, and particularly SHOES with these people.

Now, you really can't get around true in-person contact to do REALLY big deals with neurotypicals, but, perhaps, for some applications, people with autism spectrum disorders could make use of technology developed for the hearing impaired.

Now the hearing impaired have this really neat service that's just been developed in the last couple of years where the hearing person talks over the phone to an interpreter who translates to and from sign language via a webcam type interface.

PERHAPS we ought to give it a shot one of these days that a person with an autistic spectrum disorder (and I know just the person to try this :) ), would communicate via keyboard with a trained neurotypical person who would send a web-cam image to the intended recipient ADDING all the "appropriate" body language, etc. Yes, there would be some danger of the neurotypical interpreter injecting some of their own information, but, there is certainly a similar danger with sign language interpretation. Plus the notion of course that all translations are commentaries.

Such a set-up just MIGHT allow a great many people to be productive among the neurotypicals who aren't currently ...

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Sunday, March 16, 2008

The Challenges Of The High-Functioning

There's a really great piece running on Asperger Square 8 about some of the difficulties people with the label "high functioning" run into.

Bev, the author of this blog, puts a fitting name to the Notlikemychild (NLMC) phenomenon. This is the theme that I have been picking up from the writings parents with severely autistic children that somehow someone who does not have the SEVERE self-injury symptoms somehow doesn't fit in the same "class" with their children. She makes an excellent point, however, that less severely autistic individuals may very well have a history of suicide attempts and substance abuse and that these should count every bit as much as someone who beats themselves bloddy with their own fists.

Then she brings up an area that I am somewhat fascinated with - that some would see hoarding and not paying bills as "laziness" rather than as symptoms of an underlying condition.

The next section has me thinking even more that I myself may be a part of this spectrum. She speaks of unemployment and underemployment being common among the high-functioning and specifically having difficulty relating to co-workers and mininterpretting business culture.

Yep - I'd have to say these are pretty good points.

Although how to accomodate Asperger's and high-functioning autism in most professionals settings has been something that has escaped me for a number of years.

I used to think that some of the "social mechanisms" in a work environment were somehow just an extension of what's sometimes thought of as "common politeness". After a great deal more thought, however, I've come to the conclusion that there are some deep discrepencies between very basic assumptions about work between the neurotypical and the high functioning.

I think some of it may be due to the very high levels of intelligence often present in the high functioning. The high functioning very often get lured by family members into doing "tricks" - complex math problems and/or memorizing whole poems in foreign languages by age 4 - and then the high functioning get lulled into this notion that such abilities have some practical monetary value.

Nope - your average workplace environment is all about appearance. Are your shoes shined? Do you have on clothing of an "inappropriate" color or design?

I'm still not 100% sure why the neurotypicals react so strongly to clothing issues? Is it actually a leftover autistic trait that someone showing up without the proper "uniform" is "disrupting a routine" in some way? Perhaps.

But, overall, good point - yes, someone capable of writing thousands of Internet messages and producing YouTube videos DOES have different abilities than someone who can't communicate complex ideas even with technological assistance, but does that detract at all from the fact that both are disabled to the point of needing extra assistance?

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Hyperfunctioning Neurotypicals

Very often people speak of the "autism spectrum".

The general notion is that both a little girl so intensely autistic that she nearly beats herself to death and someone, by some views, merely intensely eccentric suffer from different manifestations of the same condition.

Sometimes this is expressed as a line that extends from "low-functioning" to "high-functioning", with - if I understand it correctly - the lowest functioning being those utterly incapable of meaningful communication with speech, signing, or computers, and the higher functioning being individuals who can speak but would be utterly incapable of knowing what to do if a smoke alarm went off.

Now, suppose we extend this line. Suppose we extend this line through the "hopelessly average" - the ones called "neurotypical". Of course here we find people who CAN speak, CAN order food at McDonald's, CAN make eye contact, CAN make small talk, but - if you want to think about it this way - actually start to pick up some "deficits" - the inability to precisely remember long lists, for instance.

Now, suppose we extend this line even FURTHER. Of course this is a little difficult to get a handle on because, when contemplating autism issues one might speculate that if one has conquered the issues of Activities of Daily Living AND employment that one has "gotten to the finish line", but, just as one person can be hyperglycemic and another can be hypoglycemic, I'm wondering if one actually can go too far "the other way" on traits associated with autism.

Believe it or not, there is a group of people that come to mind.

What I'm thinking of course is that as we contemplate, say, one just starting to slip from "neurotypical" to "autistic" (and, unlike certain people, I DO believe this can happen in adolescence or adulthood), usually the first thing that starts to break down are issues associated with employability.

In other words a person can be PERFECTLY capable of driving a car, paying taxes, ordering food from a restaurant, making a speech in front of hundreds or thousands of people and yet be UTTERLY incapable of understanding or coping with the BIZARRELY complex set of relationships that go on particularly in a white-collar environment.

That being the case, in our quest for what might be the "opposite" of someone with low-functioning autism, we are possibly led not to the hopelessly average neurotypical, but rather a HYPERFUNCTIONING neurotypical - someone who does exceedingly well at the very first thing someone with an autism spectrum disorder would have trouble with - work issues.

Now who would be a candidate hyperfunctioning neurotypical? Well, of course someone who is exceedingly good at forming complex social relationships and good at making sickening amounts of money. Many sales managers come to mind as well, of course, as President Bush.

Now I got to thinking what's remarkable about these individuals is that they actually start to pick up some traits ordinarily associated with autism - communication issues for instance. They tend NOT to be terribly eloquent. They certainly have SEVERE issues working with the written language.

And yet somehow they are absolute masters of non-verbal communication. Somehow through a skillful combination of clothing and projectile vomiting, in their own choppy use of the English language, reactionary tripe that would make Hitler blush, they are able to pursuade anywhere from several hundred to several million people to give them hundreds of thousands to MILLIONS of dollars.

So perhaps, although the communication issue is generally the thing that "catches someone's attention" about autism, that may not it's most important trait at all.

Perhaps, at the end of the day, it is primarily an anxiety disorder that is just so intense that it causes communication issues ...

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Friday, March 14, 2008

On The Axinar's (And The Axinar's Old Man's) Verbal Abilities

Well, we do have quite a fascinating little comment discussion going on surrounding the topic of how some people with autism spectrum disorders can SING perfectly fine, but, if I'm catching the lingo correctly, can't facilitate any other meaningful communication through speech.

Now this in and of itself is a topic worthy of some discussion.

For instance, a Torah reading in a traditional synagogue is canted, or sung. In fact, recordings of this canting can be played here.

And, yes, these are memorized verses, but one can arguably say useful information is being related in this way. In fact, whole cultures have been based upon this information.

Now, it's common knowledge that people with various forms of autism and Asperger's have trouble with small talk - eye contact, picking up body language, etc. However, the topic at hand is how someone might come to abandon speech altogether for the purposes of carrying out, as The Old Man's case worker explained the phrase to me, Activities of Daily Living.

So, I tried to figure out what many would consider a "simple" situation where one would use ordinary speech to obtain something related to Activities of Daily Living - for instance, oh, making an order at Mickey D's

Now, a new contributor, AnneC, painted the picture that she might very well start to place the order if she had been able to figure it out before approaching the counter, but if anything went wrong at all (what she wanted being out of stock, etc.), things just might come to a crashing halt.

Oh I certainly recognize this behavior from The Old Man. If something even trivial goes wrong an entire mission can get aborted. I remember once when my grandmother was in the hospital or something of the sort he abandoned a whole cart full of groceries because he brought the wrong check book or something of the sort. I think by that time I was in college and had a credit card with a $500 limit or something like that and was able to save the day. I think he had plastic on him too, but of course the whole concept of adapting to changing circumstances escaped him.

I do suffer from a touch of this myself. In the MickeyD's scenario, if they were out of the thing that I wanted I might very well have to step back out of the line and think for a second how I wanted to proceed next. There have certainly been thousands of times that a phone call hasn't gone the way that I wanted and it may be many minutes, hours, or even days before I have been able to work out a "Plan B" in my head and call the person back.

But probably the most fascinating comment comes from Amanda herself - "speech is that stuff that generally comes out totally unrelated to what I'm thinking when it comes out at all."

Oh that's REALLY beginning to sound like me.

Particularly the last few years people have stopped me in mid-sentence over and over and over again and told me I was not making any sense whatsoever.

Of course, as many of you have noticed, quite often my TYPING doesn't make much more sense.

AnneC also mentions that she thought eventually e-mail would replace the telephone because, to her anyway, typing was much easier and more straightforward than talking. Interestingly enough, there are certain areas of business that were almost exclusively conducted on the telephone that now go on almost exclusively in email. I'm pretty sure it's not because any of the participants are on the autism spectrum. Quite frankly I think it's because of the ring and voice mail time. Pretty much, if you type fast enough, there's no "wait time" while trying to "push" a message via email. Between the ring and the "greeting", you can be looking at an investment of a couple of minutes or more on each phone call.

In any event, yes, what started out as someone questioning an autism diagnosis has gotten me thinking even more strongly I have a touch of it MYSELF ...

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