The Problem With The Puzzle People

clipped from hopelessbleakdespair.blogspot.com Unfortunately, one of the issues their father and I have is what's in their best interests and how to treat them. He's one of the anti-vax folks, ready to try the cure-du-jour the minute he reads about it, and thinks that I don't work hard enough to "cure" the younger one (because otherwise he'd be cured already, don'tcha know) He is typical of many of the folks you'll see in the media this month -- stuck at the "devastated" stage of having your child diagnosed with a disability. He is desperate. He refuses to accept his son for who he is, to take joy in what he CAN do, rather than bemoan what he can't do. I understand this. I can sympathize with this. But I cannot condone this eternal wallowing in the general unfairness of life. No one promised you a "normal" child, and having one who doesn't fit the traditional categories of "normal" is also not the worst thing that ever happened to anyone.

From a mom with AS spectrum kids and an ex who's a curebie.

Well, so much for the "Plague" eh?

One of the "one in one hundred and sixty-six" statistic shares her experiences.

Asperger's: My life as an Earthbound alien - CNN.com: "ATLANTA, Georgia (CNN) -- Recently, at 48 years of age, I was diagnosed with Asperger's syndrome. For most of my life, I knew that I was 'other,' not quite like everyone else. I searched for years for answers and found none, until an assignment at work required me to research autism. During that research, I found in the lives of other people with Asperger's threads of similarity that led to the diagnosis. Although having the diagnosis has been cathartic, it does not change the 'otherness.' It only confirms it."

Please note that she is a manager for CNN. Not homeless. Not a burden on society. And certainly, considering her occupation, able to communicate quite well, thank you.

Oh, and her desire for a cure? Nonexistent.

Don't pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for "normalcy."

Like her, I've never wanted to be "the same." I would have loved to have been accepted for myself, rather than being punished and abused for it. I'd have probably ended up in some equivalent position too, so it was poor judgment on the part of educators and parents alike to try and "normalize me." Which they most certainly did, although I was not diagnosed as AS to the best of my knowledge.

What I really wish had happened was an education tailored to my learning style, my intelligence and, of course, all the things I have to actually learn that "normal" people seem to pick up from context. But I'm still pretty happy being me - and frankly, the parts that I'm unhappy about have mostly been the result of other people who could not or would not respond to me as I am.



Image Credit:

Celebrate Neurodiversity by webcarve Get this custom sticker at Zazzle

Pissing on Puzzle Pieces - It's Autism Awareness Time again.

It's April, and that time of year that rubs our noses in all the patronizing, clueless "concern" tends to drive me bugfuck. Some - even most - is well-meaning, but it's driven and influenced by those who view everyone on the spectrum as a "plague victim" who is unsuited for life.

Ah, the "the love that dare not speak it's name" has become loquacious indeed, but the Normalcy Police have not given up on creating fear and loathing of difference.

In this, I reference Autism Hub's "Don't Speak for Me" petition campaign, which is in turn a response to Autisim Speak's odius 2006 anti-autistic propaganda film, "Autism Every Day."

This film was alleged to depict the realities of autism, described by the film's Producer Lauren Thierry as:

"At this point we need to be showing the world what the vast reality truly is. [Lauren says]…that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic – not images of kids setting basketball records or passionately playing the violin."

It later transpired that the film had been 'set up' and that Thierry had purposefully attempted to display the worst possible view to the world:

"Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work."

The film itself contained a segment where one of the mothers interviewed said that:

"I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools."

The mother in question made this statement whilst her autistic daughter was in the room with her. She further added that the only reason she didn't kill her autistic child and herself was the thought of her non-disabled daughter.

Producer Thierry called this section 'gutsy and courageous' and added that:

"If most mothers of autistic children…look hard enough within themselves they will find that they have played out a similar scenario in their minds. If this is not your reality, then God bless you."

The above makes me want to chew nails and spit bullets. But instead, I decided to put my autistic savant nature to work, perseverated a while, and came up with this graphic. It is copyleft, you may grab it and use it as you wish, so long as the copyleft remains intact and the graphic itself is not altered. (You can embed it in a larger graphic, for instance.)

From Autism Awaren...

This year, I'm hoping that the combination of skill, beauty and frankness will help to change a few minds. So stay tuned, as they say - I'm uploading several versions, both to Zazzle, and to the Picassa folder this comes from. What I am encouraging people to do is to use these images to fund-raise. More on that in a separate post.

You see, I simply cannot afford to support all the wonderful sites that do battle with the forces of curebie hatred every day. I personally admire their courage, but I have enough difficulty dealing with ordinary Republicans. Oh, and yes, there is (or at least once was) a linkage between Cure Autism Now and Free Republic. It's kind of the same mindset.

Think on that, then consider the odds in trying reason with them. What you have to do is to apply reason to those they are trying to stampede to their advantage.

Welcome to the Blogosphere, AlphaMale. Buy a cup.

AlphaMale has made an interesting debut into the Blogospere, with a premise and post that's like to get him in a face off with a lot of sistas doing "that thing" with their heads.

There is a growing number of sisters that have purchased into the theatrical theme "Something New" (whereas the ideal mate for a sucessful independent black woman is a white man), which suggest that black men are all uneducated, unsucessful, unloving or sex crazed. Believe it or not, there are websites and blogs galore that support this idea along with the mass media. Personally, I am liberal and feel that a person should be with whomever they choose. But, the reason that these themes suggest getting a man of non-color is almost always justified by the degradation of black men as a whole. I recently read a blog on this site where black men were accused of being the creators of racio-misogyny (the hatred of a race of women). I can say in all honesty that SOME black men are perpetuators of this evil, but the belittling of black woman began long, long before them. I'm not going to go into the history but with very little research you should find supporting evidence like uhh....slavery and jim crow laws.

But being politically incorrect about race allows one to say things that cannot otherwise be said - so stop and consider if there might be something to it. I was moved to comment from my own perspective and with a light touch. But on a more serious note, many of the problems associated with the Black struggle are cultural, and some of those cultural struggles and limitations are part and parcel of Black Culture itself.

On the other hand, speaking from an external perspective, it's a damn rich and valuable culture, commanding more influence over our general national culture than mere numbers would suggest. So when I say there are problems with Black Culture, I'm not saying adopt WASP solutions. Those "solutions" have their own costs and I, personally, don't think they are all that great a trade-off.

Besides, Whiteface is just as offensive and inherently undignified as Backface.

But I see AlphaMale's concerns to be not so much an example of racial perspective, but "in the box" perspective. And I'm a member of a minority who's distinguishing feature is the inability to see boxes.

More to the point, though, there has never been a better time to do business and succeed as a minority anything; the internet makes it possible to detour around racial and cultural chokepoints a nearly automatic process. It's lowered the capital barrier, and it's certainly lowered the research and education barrier.

That is to say, it is now as possible to become truly self-educated as it was in Jefferson's day for someone with access to a library, except that it costs a hell of a lot less to get into the library in the first place.

Let me show you two ways - just off the top of my head - where an urban kid of any color and the ability to hustle can make some decent money, as a path toward building their own urban empire. Seriously.

Cafepress.com and Zazzle.com are two examples of online business opportunities where the only requirements are willingness to work hard and either your own talent or access to talent and inspiration.

My sites are here and here. I'd appreciate your patronage, especially if you become rich and famous. And of course, if you are a musician, you probably know all about Myspace and YouTube as maketing venues. There are probably thousands of other opportunities out there, from online marketing to small-scale import-export.

But I'd advise against dedicating your life to becoming rich. I'd rather advise you to dedicate your life to taking what you have and who you are and using that to make the space around you just a little better. That alone tends to generate capital, not just money, but more importantly, it generates social capital. Now that's a form of capitalism you won't hear much about from most capitalists. Just the really smart ones, like Warren Buffet.

I mean, it should be a shame when you die, don't you think?

1% is not enough, recruit, recruit, recruit!

Autism Diva: Where are these 1 in 166 autistics?:

"Where are these 1 in 166 autistics?
The increasing diagnosis of autism may be being accompanied by a decrease of other diagnoses, and it may be just that more people know what autism looks like now.

The largest part of the increase in autism among the California DDS numbers is in high functioning autistics, though the calamity howlers would have you believe that we have low functioning autistics coming out of our collective pores."

My analysis went in a parallel direction - given we are such a large threat to the status quo, I'd have thought we would be having a more profound effect. As far as I can tell, the only affect we are having is on fund raising efforts - and perhaps some impact on the overuse of mercury in medicine and industry. It probably won't change anything for us, but as Martha would say, "It's a Good Thing."

There are a total of 176,465 clients of all types in the Cal DDS system (cerebral palsy, mental retardation, autism and epilepsy are the main dxs) if you divide the total population of California by the whole case load of the California DDS you get 1 DDS client per 201 Californians.

We still aren't up to 1 in 166 now are we?

If you go to www.oddizm.com you can find links to more analyses of the stats that are badly abused to support a non existent autism epidemic. As usual with medical panics in the US, the media and advocates are in cohoots to create the most sensational story - and suppress the real one.

Evidence of Malice

This is what happens to Autistics who try to communicate their own individual reality - or at least, when it might cause reasonable people to doubt the advisability of subjecting their children to dangerously unproven therapies. This blog would be more honestly titled "Hating Autistics;" I have rarely had the misfortune of encountering such an outright slimy person.

Amanda Baggs Snows CNN (Hating Autism)

My posactive anti-puzzle-piece autism awareness design that states "The Issue is Intolerance" and "Help Find a Clue!" Partial proceeds go to stress relief.

What I just watched on CNN with Amanda Baggs playing the role of a low functioning autistic was a disgrace. Low functioning autistics can't type anything. They can barely pay attention to anything, nevermind keep up a conversation by typing 120 words a minute. Cute little girls don't usually turn into fat ugly monsters either.

Did anyone else notice the little blond girl who turned into this beastly brunette? That little girl's eye contact with the camera looked normal to me. Perhaps her whole face changed when she was smitten with schizophrenia. Maybe she's not even the same girl.

How come Amanda can focus long enough to type without stopping to twiddle her fingers? One who deals with autism every day knows that expecting a low functioning person to pay attention to any task for long is expecting a lot. This overacting is a dead giveaway that Baggs functions much too well to be considered autistic. Why didn't she space out in the middle of answering a question and go finger twiddling for awhile? Bullshit, this imposter can focus long enough to make her point for CNN without having any autistic "moments".

Autism occurs a spectrum and every autistic manifests differently. This is complicated by a number of other "comorbid" conditions that tend to show up with autism, but are not in themselves autism, and which also occur in other contexts. It's a difficult diagnosis even if you are not a quack, because there are overlaps with many other possible conditions - and all of this is generally determined without the input of the person concerned using diagnostic criteria that can only be described as "maddeningly vague."

I should state for the record that there is, factually, NO credible scientific evidence of a link between mercury toxicity and autism. I have to admit that I was somewhat surprised and skeptical, seeing that mercury is by no means health food, and does have cumulative neurotoxic effects. But Autism is not the damage mercury manifests, and there have been enough studies to make what seemed like an attractive quick fix obvious quackery.

Likewise, Applied Behavior Analysis and other such Skinnerian behaviorist approaches cure nothing. What they do is create a set of conditioned reflexes, which may or may not generalize into understanding of why the behavior is desired. Autistic children are trained in the same way the "white stallions" are trained to caper and dance - they learn that disobedience results in a shock prod to the genitals.

This overcomes their reluctance to do nonsensical things they are uninterested in doing.

Surface compliance is not a cure, nor is obedience evidence of respect. But I think this person is so insecure in his own masculinity that he takes his' son's autism as being willful disrespect for his authority.

As far as I know, the only real cure for disrespect is to be respectable. Alas, I suspect that cure to be outside of John Best's grasp. He's far too attached to his own dysfunctions and personality disorders to either deserve respect or respect anyone with divergent, more useful viewpoints.

tag: cure autism now, neurodiversity, posactive, pro-autistic, aspie, aspergers, AS, autistic spectrum, autistic parenting, chelation therapy, Amanda Baggs, Autism Quackery, xenophobia, bigotry

Great Parenting makes a great difference

While the Refrigerator Mother hypothesis has been discredited as a cause of autism, it was seemingly never addressed as a symptom of a reaction to an autistic child. Bluntly, while "refrigerator parents" do not cause autism, they do cause tremendous disability and damage that persists for a lifetime.

In one critical respect, autistic children are no different than other children; we are keenly aware of our parents and how they feel about us.

For good or ill.

The video here is a record of advocacy from a 9 year old autistic young man who uses a keyboard to do most of his verbal communication. He is identified as "D" here.

He was part of a panel hosted by an autism organization. The audience submitted written questions to all the panel members, some of whom were diagnosed with Asperger's syndrome and some with autistic disorder (Kanner autism, core autism, whatever folks are calling it this week).

D's answers were intriguing, at times puckish and inciting as well as insightful. (Autism Diva is trying to follow in D's charming footsteps and use more erudite and scintillating parlance.) D's answers are recorded here on this video made by D.

We are certainly aware if we are felt to be a cross to bear instead of a treasure and a joy. We are also keenly aware when love is conditional upon behaving as if we were not ourselves, conditional on telling them what they wish to hear rather than what is true and real for us. We especially learn that our perceptions of how others treat us is unwelcome. Wait, perhaps that was just me. But when I came home, crying and bleeding with various injuries - the first thing I was always asked was what I had done to deserve it.

I have no idea what my diagnosis as a child was - my parents were very secretive about that - but I'm sure there were several. Probably one was "childhood schizophrenia," given the era. But I do know that I had my head candled many, many times and the results were always, obviously and clearly, my fault.

This is absurd, of course, and even then I was reasonably well aware that my parents were neither reasonable nor rational on the subject that was me. But the net result was that my parents completely overlooked everything about me that was potentially valuable while focusing intently on all my manifold "flaws," which were always related to being insufficiently like the other children they kept trying to force upon me - at any price.

Meanwhile, they went to great lengths to sabotage my interests and to interrupt my perseverations; communicating to me that if I was interested, it was therefore inherently valueless. Had a "normal" child shown the same abilities and interests as I, they would have been turning handsprings. Moreover, I showed no tendency whatsoever to engage in "normal" adolescent stupidities, such as drinking, compulsive risk-taking or engaging in pointless athletic mating display contests. (That was my perspective at the time. Now I rather regret missing a small portion of my share of the above; I do wish someone had bothered to explain the point to it all.)

While this gave them much less to worry about in a real sense, my mother at least found a great deal to fuss about in the realms of the unreal and untrue, while managing to overlook almost everything she could have usefully addressed, such as abuse - mental and physical - by schoolmates and teachers that has left me with permanent and surely apparent emotional scars.

I was frequently told that what happened to me was my fault for "not fitting in," the delusion compounded by the assumption that I would have been allowed to fit in under any circumstance. Alas, when a child (or adult) is identified as a legitimate target, nothing that person can do to change their status within that social matrix. They must either escape that matrix, or be destroyed by it.

It is not surprising that adolescents with AS spectrum issues suicide at a rate that has been cited as being as high as thirty percent. It has nothing to do with autism, per se; it has to do with abuse, rejection, humiliation and depression resulting from repeated failures to fit in with the antinomy of being told by everything around them that they would be loved, accepted and valued if they did fit in.

The tragedy is that the autistic mind is adapted to function best apart from and outside of a social dominance hierarchy. So much of the "best advice" is 180 degrees incorrect, starting with the presumpton that a lack of a broad social network is the result of, or the cause of, emotional deficits and damage.

In fact, autistics need a small number of intensely dependable and deep relationships; those outside of that circle will tend to be activity-based relationships rather than emotional ones.

It's a profound difference, one that seems very difficult for Neurotypicals to understand - but it is nonetheless true of AS spectrum people to a broad degree, to the point that it seems fall within the range of "autistic-normal."

I've often wondered what I'd be like had I been raised by sane parents, or, frankly, even wolves.

D's example; a nine-year old boy who is valued for what he is, rather than devalued for what he is not tells me that's all the "cure" that we autistics require.



tag: autism awareness, cure autism now, neurodiversity, posactive, pro-autistic, aspie, aspergers, AS, autistic spectrum, autistic parenting

Amanda Baggs: in My Language

Watch this all the way through - and then realize this is the sort of thing Lennie Schaefer fears so much he'd like to eliminate it entirely, through genetic screening, abortion and if need be, the torture that behaviorist approaches can be.

As for the social issues that autistics to all degrees suffer - I think what we really need to do is cure this:

IWasFelt (14 hours ago)

blah blah blah whatever, retard

(Reply) (Spam)

tag: anti-cure, curebie, autistics.org, common decency, AM Baggs

The Evil Monkey with the bloody burrito should have been a clue...

These are your Vegans
These are your Vegans on Crack.
Any questions?

Pokez in San Diego is notorious for bad service, mildly filthy conditions. a seriously cool vibe and food that ranges from average to exceptional, possibly depending on the medication level of the cooks. Love it or hate it, most people just put up with it, because it's A Cool Place To Be. This apparently makes it worth putting up with rude, possibly stoned wait staff and God knows what in the coffee.



But when a rude, possibly stoned waitress allegedly shook and yelled at an autistic child, his father thought the situation to be very uncool indeed.

UPDATE: Coming from Childfree_Hardcore? This is just for you.

Story found at Ballastexistenz.

Autistic child assaulted while ordering food

"Last night, we went with nolly to Pokez, a Mexican restaurant in downtown San Diego. We had to wait about 15 min. to order, and the waitress seemed stressed. It was David's turn to order... he was slow to make up his mind while ordering, and grumpy. Not yelling or anything himself, just cranky. The waitress took this as directed at her, she suddenly snapped. She grabbed his shoulder, shook him, and leaned over and started mocking him, yelling his words back directly in his ear. He asked her to stop, and she grabbed his shoulder and then started screaming in his ear. Screaming that she had had enough and didn't have to work with this. And then she let go, stood up, told the table that she would not serve anyone at the table, and stalked away. He hadn't touched her beforehand... he wasn't even making eye contact, he had been looking at the menu.

We all looked at each other, in shock. After a pause, I got up and went to the manager, behind the register. I politely explained that I had an autistic son, that sometimes he needed a bit of extra time or patience, and did not read body language well. And that his waitress had abused him and refused to serve our table, and that that was unacceptable. I wanted an apology and a different server. But the manager backed up the waitress. He said that she was right, and that if my son was "going to be too much trouble" then we should not let him order for himself in restaurants. That it was our fault for having a child that needed patience or hesitated while ordering, and so we should have ordered for him. And that our party should leave.

James (his teenaged brother) was sullen and blamed David.... we were silent, mostly not believing that this was happening. Eventually went to another place for dinner.

[updates have been posted subsequently... basically, as of Friday evening, I have talked to the local Autism Society, and their attorney several times, have tried twice to file a police report (only could get an "incident report" from the SDPD), and have sent a letter to the local paper (Union-Tribune)]"

I called Pokez myself and asked to speak to the manager. I found that I was, and I asked for their version. The manager (I'm afraid I aspied the name) replied that those present were "being rude" and were ejected for that. She also informed me that the child was "not really autistic" because "Most autistic kids can't speak."

Thank you for all your help, Lennie Schaefer.

However, the only honest way to describe the conversation was "rude and dismissive."

My only other contact was the webmaster for Pokez, who disclaimed any responsibility for pokez, other than hosting the website, but said he'd try to speak to the owner. He did repeat over and over - as if it were a mantra - that if there had been a problem, it should be reported to the police. That didn't make a lot of sense to me at the time, but after seeing multiple alligations that the place is staffed by "crackheads," it begins to make sense. I assured them that it had been He also informed me that Pokez has their own Myspace. I found myself in the strange land of cool kidz who don't give a fuck. (loud music autoplays)

A little too much "attitude," not enough punk ethic if you ask this old punk.

Meanwhile, it's rating on Yelp.com continues to plummet, lawyers keep offering the father of the alleged assault victim representation services and it's turning into the Giant Hairball of Doom. Things should be interesting come Monday.

Asshole vegans pick on suburban NASA employee's kid, because "they don't have to put up with shit." That might just be wishful thinking.

This review, if true, may Reveal All.

Pokez, what a strange place, but sort of a quintessential san diego thing.

First you should know that none of the servers get paid. They work for free. And for tips. Why? I think there are a few reasons. Because working at Pokez is a glamorous job in the mind of young san diego hipsters. And most of the Pokez crew are using drugs (meth, coke, heroin). So that would explain the service.

How the owners get away with this I don't know. Where they find these kids (the staff is continually changing) I don't know. But I would surmise, drugs has something to do with it. And there's always some new naive hipster moving to the environs of downtown san diego.

The food is your basic greasy mexican food. It can be good or bad depending on the cook. Pokez does have a lot of vegetarian options you won't find at other mexican restaurants though.

The atmosphere is kinda like the malt shop on happy days but with a hipster, druggie vibe. And with everyone thinking they are the fonz. I'm always struck by how young the crowd is, and how they seem so out of place in that part of town, like they teleported in from god knows where.

Check it out if you must, its kind of an interesting place.

Bottom line - from all the reviews that came up before this occurred it seems like the story is plausible, and if true could - and should - result in some unpleasant consequences for those involved and those responsible for those involved. And as it happens, people on the spectrum, such as myself, have both a passion for justice and the ability to perseverate until justice takes notice.

And all because a waitress couldn't - you know - actually wait for an autistic child to make a choice.

Karma is a bitch and I love her so.

UPDATE: More here, not so much about the incident per se, as about the ethics of the incident and why it's become such a massive hairball so quickly. I had to get an ethics post out of this somehow.

UPDATE: I got some off the record indications that people connected to this are deeply concerned with what they see as an unfair perception of the business. But I have so far not been contacted in any official, on-the-record way by Pokez management or owners.

UPDATE: The link to the Pokez myspace above has some kind of wierdness - let's try this: http://www.myspace.com/pokezsd

If that gives a 404 error, go to myspace and search for pokezsd and you will find the page; it's still there.

tag: karma, pokez, San Diego, mexican food, vegan, autism, autistic, assault, assholes

Evidence of Nonsense

The term Autism has become a vast catch-all for a wide variety of traits that range from those that are functionally incapacitating to those that mildly affect behavior and social interactions. Nobody knows quite what "autism" is, save that it is obvious that it's probably far more than one thing and that it causes a good deal of fear and confusion among parents who are moving heaven and earth to find treatments and cures.

Which is wonderful of course, but it's also terrible.

ScienceDaily: Ped Med: The autism treatment challenge: "'There are no standards for safety in autism treatments,' said Steven Gutstein, psychologist, autism specialist, researcher, child, marital and family therapist and co-director of The Connections Center for Family and Personal Development and of the Relationship Development Research Institute in Houston.

...

'There's not a single study to see if anyone is harmed by the treatment, be it biomedical or behavioral,' Gutstein said in an interview. 'The assumption is both are better than nothing, and the more the better, but there are no data to confirm that.'"

Hey, I have an idea; how about asking an actually autistic person?

"I am not a puzzle, I am a person."
This shirt design supports Autistics.org, autism awareness and neurodiversity in general.

Now notice the language I used. "Autistic Person," not "Person with Autism." Speaking as an Aspie - diagnosable with Asperger's Syndrome - and speaking from my experiences dealing with actual autistics, such as those at Autistics.org, It's pretty common for folk on the spectrum to think of autism/aspergers/whateverthehellitis as something they are, not something they "suffer from" that could be cured.

I'd rather be "cured" of opposable thumbs.

And that with full realization of all the downsides that I and those who love me cope with every single day - much to our blended amusement and frustration.

Interestingly - even astonishingly enough, many full autistics, who seem to suffer quite badly from clearly crippling "downsides" feel exactly the same way; our minds are beautiful places to live, and from our perspective, being able to live fully in a neurotypical world exactly as neurotypicals do seems like a "cure" that is far worse than the "disease."

Oh, don't get us wrong - we'd definitely like the hard parts to be easier - but we'd also like you to notice the things we do well without words like "idiot-savant" being thrown about. "Geek" is somehow better, frankly. Not a LOT better, but at least it's an honest word.

Personally, I prefer "eccentric."

UPDATE: Autism Diva has a great long article up that I'd like you to read. I particularly like these two 'graphs, which illustrate her point rather well - and the one I was trying to make. Autism - and so many other things in life - are much more issues of perception than substance.

Autism Diva is reminded of a caller to the Diane Rehm show when Dr. Grinker was on there promoting his book. The caller said something like: "I'm from a large extended family from Tenessee," (maybe he said, Kentucky) "the behaviors I see in my son, that the doctors call "autism" is just how my family is. No one in my family would have sought out a diagnosis in the past because so many in the family are just like this. It's normal for us."

So it sounds like if you come from a family where lots of the kids spin can lids and stop answering to their names at 12 months, everyone just says, "Yup he's a Johnson, awrighty. Wonder if he'll be able to do that calendar trick like cousin Ted." The caller certainly didn't indicate that the family had a habit of mourning the birth of another of these weird kids, and it's safe to assume that some of the members of the family were quite autistic and others were more like normal-ish, like it is in little Hayden's family.

tag: autism, autistics, autistics.org, autism awareness, cafepress, tee-shirts, t-shirts

Give a Clue this Christmas!

My Latest Autism Designs and what they mean.

People who are neurotypical tend to think in boxes. One problem with being on the Autistic Spectrum is that you tend to not think in boxes. As far as I can tell, our thought process is highly relational. We tend to not even SEE the boxes and we don't think in a binary way at all.

A great number of problems come from the inability to understand that different people can have starkly different ways of understanding the world around them.

We tend to assume that people who came up with a functional solution for a problem came to it in the same way; indeed, by way of the same initial perceptions. Autistics and Aspies are as guilty of this as anyone; indeed, it's been studied within the AS population. The reason it's not been studied within the NT population is simple; in the case of NT's, the assumption that another person has a thought process that works like yours does is statistically likely to be correct.

So, when an autistic person makes this unwarranted assumption, it's called "mind blindness" and the autistic is gently handed a clue in the form of "social stories." When an NT does it, it's in the form of an organization called "Cure Autism Now."

If "autistic thought" were not valuable, there would not be such a roster of famous thinkers, such as Einstein and Newton now thought to have been probably autistic to some degree. By the same token, it should be a profound clue that there are courses to teach neurotypicals to "think outside of the box," and almost all higher education is aimed at rooting out simplistic, either-or thinking and to over-ride fear and submission responses when you have to communicate about or defend your work.

The ability to think and function outside of the box is an asset of significant value; recognising that is especially important if you are planning to "do something for autistics." Their ability to function in 'in an appropriate way' is limited, but that does not imply their ability to function, given an appropriate context is as limited as it appears. The trick is to find that context; and in that context they will not have so much difficulty "being appropriate."

There's no area where this insight is more critical than in regards to the parents of autistics themselves.

Make no mistake; autism can be a crippling condition, and it's made worse by being a condition where you absolutely must depend upon others to accommodate your needs and accept limitations that those without the condition cannot easily see or understand. But even the most obviously disabled "autist" is as severely affected by presumptions of how their disability affects them and even more by refusal of others to accept our word for the accommodations we need.

This following paragraph is emblematic of the crippling parental fears that the 800-lb gorilla of the pro-cure movement exploits for funding and validation:

You are never prepared for a child with autism. You will gradually come to believe it, but never fully accept it, get used to it, or get over it. You put away the hopes and dreams you had for that child - the high school graduation, the June wedding. Small victories are cause for celebration - a word mastered, a dry bed, a hug given freely. - FAQs about Autism: Cure Autism Now

Those of us who object to such fear, panic and the pervasive bigotry that exists with in the pro-cure movement - as well as it's seemingly obvious ethical deficits are pretty soundly attacked, with all kinds of terrible motives assigned us. (Theory of Mind, eh?)

A great deal of the work on the support groups that accept AS persons as contributors - something of a rarity - is to get non-AS people to accept that our "inability to cultivate friendships" is not a crippling condition to us. Once we have our one or two friends - friends as geeky and weird as us, generally speaking, we are done. My personal limit is two, and what NT's call "friendships," I now interpret as "Acquaintances." Yes, of course that has profound effects in terms of my ability to sustain a social network, and that has cost me many opportunities; indeed even jobs. I try and work things so that one of my two has the social skills I lack and the willingness to use them on my behalf.


Unfortunately, there is a lot of very bad advice out there and some very bizarre ideas as to what will be helpful to people such as I, who are on the spectrum and who are nonetheless potentially articulate and intelligent beings. Mostly this revolves around the idea that a bad job of conforming to the expectations of others is superior to a good job of being me. Here's Lennie Schafer on the topic of "fake autistics" like me.

(What about "high functioning autism" and how does that fit in? Simply put, it doesn't fit in anywhere. High functioning autism is not clinically defined and is not in the DSM-IV, and for good reason. High functioning autism is an oxymoron. If one meets the criteria for a diagnosis of autism, by definition one cannot be high-functioning. It would be as silly as the term sharp-eyed blindness.) (1)

So why would a handful of people, amongst a few others, who apparently are for the most part Aspergers, if anything, want to identify themselves autistic? Perhaps because autism is a profound disability and Aspergers is a disorder that is mostly not. Autism thus carries more moral weight than Aspergers and therefore has more moral clout for self-esteem building political and social agendas. "We autistics don't want to be cured" carries much more punch than "We Aspergers don't want to be cured", especially given the reality that there is no movement anywhere that seeks to "cure" those with Aspergers into being anything else.(2)

Aspergers-labeled alone, they would be ignored by the press and would be denied the juicy sense of empowerment that would come with a high-profile "oppressed minority" movement article like the one in the liberal New York Times. (3) (4)

The New York Times reporter failed to do a journalist's most basic homework. She failed to check the credentials of those doing the complaining, despite my urging. Anyone can call themselves autistic and write cranky letters to the editor. So how does someone determine if a person is truly autistic,or is an autism imposter with Aspergers? Ask to see their diagnosis. If someone claims to have autism for purposes of making some political statement, ask them to prove it. In any of the correspondence I have had with the autism "imposters", not one has ever supplied such documentation. (5) Of course, it is highly unlikely to ever see it. The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic.(6) Apparently more than one big city newspaper has failed to see through this deception, so eager are they to get an unusual victim story into print. Can we afford to allow the interests of our autistic children and everyone else "on the spectrum" to be pushed out of the public eye and displaced by a handful of imposters crying a contrived victimhood? Who speaks for autism? Not this bunch.

Note that he, and those like him don't like being quoted, even under "fair use" constraints.

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Of course, if I committed so many foolish rhetorical errors in public, I'd prefer not to be used as a hideous example either.

1. Argument from Authority. Of course, the process of determining what goes into the DSM-IV is pure and objective science .
2. Aspergers is, in fact an autistic spectrum disorder and has quite a range of effects. As a step-parent of a diagnosed Aspie, I'm very aware of the fact that there are very significant issues involved. They are not so inconvenient to US, as parents. They are going to affect HIM quite significantly unless we find some adaptive strategies that work for him.
3. As opposed to the entirely legitimate empowerment that comes from suffering the hideous, horrendous burden that is Autism.
4. Of course, it's a liberal thing to be concerned about the civil rights of children being abused and neglected for the sake of the convenience and social comfort of their conservative parents. This is the root host for "Autism, A Debilitating Disease, not a Culture," a page that links to both Free Republic and Free Dominion, while telling Canadians they a vaccilating, unpatriotic fools for not joining the "Coalition of the Willing." Snark aside, the fact that this site, is associated with Authoritarian Right Wingers explains a lot about the entire, very authoritarian "curebie" movement.
5. For myself, I want to see Lennie's MENSA results, his HIV status and full financials proving he's not unduly profiting from his activism before I deign to speak with him. I suspect he's unworthy of my attention, but if he proves otherwise, I will of course listen.
   
6. Factually untrue.

Unpuzzled is my most militant anti-curebie design, with the slogan, "help find a clue."

I know, it's rude and confrontational, but I've found that sometimes you need to swat people with a clue-by-four in order to startle them enough so they actually listen.

Those "seeking a cure" tend to ignore everything from those of us who ARE on the spectrum because it doesn't fit into to their mindsets, just as they reject "inappropriate" responses to communications from their autie and aspie children.

This is especially true of issues about communication style, reasonable accommodation and most importantly, the concept that a difference need not be AS disabling as it seems from an "NT" perspective. And, speaking as someone who's gone round and round on this at various times and under various circumstances, those who most boldly wave the "puzzle ribbon" seem at times to be making a point of their puzzlement, and their inability to understand to be the issue of auties and aspies.

See point above about how many friends and relationships an autie or aspie needs in an emotional sense. We do not absolutely require a relationship with the biological parental units. It's a nice thing to have, but we cannot and some quantity of will not be as easily coerced by family emotional ties as neurotypicals can be. This is not just because we have a "faulty" connection between emotions and reasoning. Our reasoning is not emotional, and our emotional responses seem to be quite different - across the board. Put two aspies in the same room and they will communicate quite well indeed - but their body language, topic choices and intuitive negotiations of "status" will be starkly different - and one of the greatest differences is the relative lack of huge tooth-bearing grins with full eye-contact.

To an aspie, to most sensible primates and all cats I've ever met, bare teeth and a full-on gaze is, at the very least, a statement of territorial or situational dominance, inviting a ritual contest of wills to determine who will be in charge and who will submit. Your typical aspie doesn't wish to play that game, having no need or real desire to join your pack, so if you do see them bare their teeth - it's probably in the context of a genuine, non-ritualized warning that Bad Things Will Suddenly Occur If You Do Not Go Away NOW.

What part of "Agggh! [flap flap flap] [throw object] LEAVE ME ALONE" is unclear to you people?

The "Unsmily" design honors the "aspie smile," a neutral expression that essentially means "hailing frequencies open." That look of slightly blank attention is a sign that an aspie or autistic is willing to let you talk at them for a while. Indeed, oft-times we are listening so hard that we are not thinking about what we will say next.

No pointless social noises please! Talk about something that is both objectively important and something within the realm of my interest and ability to have an opinion on. Make a full statement, then shut up and let me talk at YOU for a while. Then it's your turn.

Appalling, isn't it?

Well, that is the way aspies and auties communicate best - asynchronously. The full give and take of an NT conversation is difficult for us, and those of us that can manage it are doing it because we realize that style of communication is important to our NT friends all out of proportion to anything actually communicated. Mostly we grunt and make what experience has taught us to be socially appropriate noises at the expected times.

We are quite unlikely to put up with attempts to get us to conform to your expectations of what people like you should be. We are not 'like you,' and while we do very clearly appreciate that you have social advantages we do not, and we all understand that any parent would wish their child to have every possible advantage - we also know that many of those "advantages" come with a price. Some of those prices are ones we cannot pay - and for many of us, compromising who we are or being less than honest about what we know to be true is a price we will not pay - no matter how politically incorrect it may be to point out that the emperor has no clue.

Squd Rosenburg Has a Request.

Help Leelo's Local Friends

Leelo's Store Sticker (Rectangular)

Leelo's special ed department/occupational therapy department (i.e., special needs motor work) has no money to buy the kind of equipment they'd like; the kind that would really make a difference not only for autistic kids like Leelo but for all the kids in our city who rely on school district--i.e., public--support for their sensory and occupational therapy needs. Specifically the department would like to buy a scooter ramp as it will perform about fifty different functions in one compact space.

I said that I'd help. I said that if I invoked the power of the blogosphere, and got enough people to skip a latte or two (or five), there would be no way we couldn't raise enough money to get those kids their ramp.

So, feel like doing some good during this upcoming holiday season? I am trying to raise $757.90, which includes the ramp's purchase price and shipping. If we can raise the money by 12/20/06, it will be a lovely holiday gift for the special ed department. In fact you can even print out this page and tell your friends that you made a donation in their name instead of getting them a cluttery, tangible gift. A skipped latte's $2.50 is more than welcome.

Straight donations are great, of course, but I am also selling handmade Leelo coloring books at $20 each. The books feature the bold lines and simple rhymes that Leelo and his friends enjoy, plus scenes that will make any parent--but especially parents of autistic children--chuckle (or sigh) in recognition. All proceeds will go towards the ramp.

If you want a coloring book, go to the donation page, and click on the "contribute" button. You'll be redirected to PayPal. Put "coloring book" in your PayPal subject line, and don't forget to include your shipping address.

You can also help by ordering Leelo shirts and gear. A $10 donation is part of their purchase price. You can get Leelo gear at GoodStorm (t-shirts only) or CafePress (t-shirts, stickers, mugs).

I will add a further $10 donation from my own pocket if you send a picture featuring your Leelo gear to me at aba_help AT yahoo D0T com.

Here is the scooter ramp's description:

"This ramp incorporates a climbing feature with the addition of bilateral hand rails in addition to the rope attachment for hand-over-hand climbing. The ramp can be adjusted to 2 different inclines. Both ends of the ramp are beveled where the ramp meets the base and floor to give a smooth ride. Assembly consists of 4 wooden pieces held together with wing knobs. No tools ever needed. Easily disassembled and compactly stored."

Again, our deadline is 12/20/06. Leelo and his friends say Thank You! And please feel free to spread the word.