2/28/2010

A Word that Slips Off Our Tongue Without Thinking: Are Any of us Exempt?

It's a word used in daily discourse without thought. We want to express how backwards, messed up, dumb, hairbrained, or ridiculous something is, and it pops right out. It's too easy. Our youth use it nearly every other sentence, I kid you not. It slips off their tongue, devoid of any awareness that it refers to individuals with intellectual disabilities, that it stigmatizes these individuals, lessens them. And it's  just as easy to understand how they can not get it; they aren't talking about people who are disabled, they're talking about people who do dumb things but shouldn't, not them, not the real people who aren't....well, you know...they weren't even thinking about them. So, what's our problem? It's just a word, you know? No big deal. And when it thoughtlessly slips off our own tongues, too late to call it back, and we cringe because we weren't meaning to say it, we don't mean any harm, well we can either self-justify it or own it. We screwed up. We've got to change. We've got to stop using that word in casual coversation. We've got to stop thinking it's okay to laugh at.

Comedians have made their careers on it, dee-dee-dee. And we've laughed, because we know they're both not talking about those people and talking about those people, you know? And, the truth is, it cuts to a truth. People do stupid things, so it's become a short hand, but it should make your upper lip curl with disgust if you think it through, dwell on it, think of someone you know with a cognitive impairment and how you feel at the thought of someone mocking or ridiculing them, or of someone using them to mock or ridicule someone without an impairment who's been a dumbass.

It's time to look close, deeply at ourselves, our prejudices, and acknowledge that we all have them, that there's a group of folks we disparage. We need to question why. We need to challenge ourselves on our language, and acknowledge our slips and that we all have a ways to go towards accepting others who are different, with different challenges. We need to experience that dissonance, hold ourselves up to examination, and accept that we've got some dark sides that we need to bring out to the light.

I've got two decades worth of experience in parenting a special needs child, and I've watched the language on how we describe them change, watched the shift from mental retardation to intellectual disability as the first term has taken on the same stigma, same onus as the original three terms that we use with every bit the frequency of the "r" word. Watched as worked to find terminology that wouldn't take on such negative overtones, and tried to keep up with the name changes and shifts in perception.

I'm not roundly condemning the people who use the "r" word thoughtlessly; I don't think they are bad, evil people. I'm acknowledging that it's far too easy for any of us, all of us, to thoughtlessly use a word that disparages intellectual disability. And I'm not sure where dumbass fits in there, either, to be honest. I'm really not.

I'm asking for people to think when they hear that word, especially when it slips off their own tongue, or they act in a way that mocks the disabled:  Do you realize what you just did? Did you intend to do that? Do you understand that it demeans a group of people? I'm asking all of us to own it when we do it, to reflect on it, to feel the damage it does, and to work actively to change that, to work towards eradicating that word, and the other three (the two "i" words and and the "m" word) when discussing people, whomever they might be. Let's find a better way to address the less than ideal decisions people make. Let's find another way to talk to people we disagree with. And, maybe, just, maybe, let's examine dumbass, too.

2/27/2010

Grape Hyacinth From Today: New Flowers! Fresh Flowers! Early Spring Flowers!

An Angel Needs Answers About Women: The Women of RFID and Mamma H (and some of their menfolks) lay some on him

Kim:

One of the beauties of friendships is that when one of us gets asked a question, we can do a group huddle and figure out how best to respond. With Mamma H throwing her writing pencil into the ring, we can now offer the perspective of five women, a raisin, the emperor, and a raccoon. It's a powerful thing, certainly, and one that should only be utilized for the really big questions like "What's up with women? Why are they such pains in the asses?"

An internet friend recently asked me some questions at Countering about women, so we're going to do our best to answer, both seriously and with a fair amount of humor because if you can't laugh, whatever is the point?

We'll all chime in where we feel we have something to offer. The raisin and the emperor may even offer a thought. Between the two of them, they've been through a fair share of women, and Thelma tells me she, Mamma H and Louise have been through more men than they've been through Wild Turkey and Boone's Farm, so I imagine they'll have plenty to offer. Whether it's of any help or not or instead drives you directly to the bottle, well, that's another thing entirely.

Questions will be be inset and bolded and the responders will have their name at the beginning so you don't lose track of who the wisdom or bullshit is coming from.

"Some females are all about their feelings and you considering them? What is that mean and how do you do that?"
Kim:

Not all women are the same, but most people in a relationship want to know that their partner cares about them and considers their feelings before doing certain things.

So, many women might be upset if their partner is going to be late and doesn't call or text to let them know ahead of time. Or, they might be upset if you left the house without saying goodbye. Some might not care. You should ask direct questions of your partner. You could try something along the lines of, "I'm not good at figuring out what other people want. I know what I want in certain situations, but I also know that maybe others wouldn't want the same thing. If you tell me what you want, then I will try to remember that."

Thelma: Well now, ain't nothing we like better on a Friday night in Stink Creek than to sit a spell, drink us some and chatter with each other. As of late, what with Mamma H and the raisin chasin us out of the trailer with their runnin around nakkid and such, Louise and I have been spendin us some time at the bingo parlor, listenin to the seniors chat about their relationships. Folks come to Louise from far and wide for love life questions, so she's bound to give you some tips for the boudoir that might make for a distraction, anyways.


Now, we all have feelins and some of us are of the idea that our feelins are more important than the partners. Don't know if ya got that goin on there, Mr. Angel, so I won't reckon it is. I'll reckon ya'll is miscommunicatin and it's frustratin for the two of ya. Wait til ya'll are calm like, in the afterglow, then be right careful, and ask her, "hon, ya know I wanna make ya happy, but ya are like a raccoon with a coin in a river. Can ya give me a glimpse in there of what ya want. Ifn I don't know, how can I give it." Take the coin away first, though, or ya are bound to never get an answer.


Kathleen-I think that is just means that they want to be considered when you make a decision, or choose a course of action. For every action there is a reaction.


They would like to be asked. "How are you?" "What would you like to do?" "Would it upset you if I...?" "What can I do for you?"
"What do you think about this?" They would also like to know what you think.



Louise-Cause darlin, some women want ta be seen as more than a source a glorious release! There's a head between those bosoms and it aint yours!



"What are the rules, procedures and algorithm to do this?"
Kim:


Unfortunately, theory of mind in neurotypical females is also impaired. There are many selfish women out there who refuse to consider the men in their lives and what they might want. There are even country songs for this.

Thelma: Noddin yes, looking like ya care and are interested even if ya ain't go along ways. And ifn she asks ya, "Did you hear me?," just answer, "Yes, dear." and repeat the last line of what she said. Don't sigh neither when you do it or look at her cross-eyed.

Kathleen- Action + reaction =outcome. You must also consider the variables.


variables include likes, dislikes, physical feelings. There are variables to the action besides variables to the reaction. If you hone in on what those variables are, you will have a more predictable outcome. So if your inclination is to say "I would like to go and be by myself for a little bit" you have to look at the variables..has she said she is tired or sad or overworked stressed out, calm..etc. By knowing the variable or root of what her mood is you can frame the question in a more positive way. If she is cranky you could say "Hey, would you mind if I took a little time by myself..or would you like me to do something for you?" You would get a better response than if you didn't acknowledge her state of being. It will give you more control of the outcome.

Louise..sugah, there aint no rhyme or reason ta bein with a woman. Ya aint tha tha first fella ta ask that question, ya won't be tha last. I'll tell ya true, it keeps gals like me workin overtime! Boy howdy! Iffen I had a nickle for every time a gentleman asked me "Miss Louise? What all DO they want?" I'd be a wealthy gal!


Sometimes a fella just wants a soft bosom ta rest there heads and accessories..
Why do some females fight over mundane things like dresses? What is the logic behind this?

Kim -There is no logic behind this, just pure animal emotions. Plus, do you mean physically fight over it or argue about a style? Those are very different things. I have never fought over a dress in order to be able to buy it. For one, I don't care enough. Two, if there aren't seven other dresses/shirts/pants in different colors exactly like it, I don't want it anyway. I wish I were kidding, but I'm really not. I like my clothes to feel the same way, so if I can't get multiple variations on most outfits, then I'm not buying it.

Thelma: I recollect one year Louise and I had drove on up to Lexington to go shoppin for some more of them hot pants she likes to wear. They was on sale and all, and the store was about to bust with women of advanced years and advancing bosoms just a droopin out. There was a fair amount of caterwaulin over some of the more outlandish prints, as I recall. Louise had her eye on a pair of watermelon print hot pants, but so did this little old grandma, right near Mamma H's age, and she was mighty spry with that walker of hers. She came a barellin over for it just as Louise had set her hands on them, the only pair they had left. Shewey, bosoms flailin, hand awavin, and a fair amount of cursin ensued as they haggled out who was gonna go home with them watermelon pants. Well, I waded right in and offered the grandma a sip from my flask of Wild Turkey and a fiver, and Louise went home with them watermelon pants. She even had some teeny tiny spiky heels that a huge plastic wedge a watermelon on the front. She was such a sight!


What I'm sayin is, there ain't no accountin for taste, nor for what a woman will decide she cain't live without. That, and thank the lord we're all different. Ain't gettin me in watermelon pants unless ya wait til I went and met my maker.

Kathleen- I have no idea. It could be because our society has changed. Men are no longer the sole hunters and women aren't just the gatherers. Perhaps it's a form of hunting? Maybe they are bored..or looking for an outlet for anger or frustration?


Louise-Thelma my gal! Now y'all didn't have ta waste your turkey on that droopy bosomed bag a bones! Cue balls in sweat socks is what they was! kind a hynotizin tha way they was swayin back an forth all pendulum like. Well hell, I'da wrapped em round her head till she was lookin like one a them floppy eared bunnies. Hop hop hop! Thats for damn true. Imagine her thinkin she could fill them watermelon pants tha way tha good lord intended them ta be filled. It'd be like puttin a condom on a vienna sausage! Boy howdy! Wheres tha beef?
"When you question it they say you will never understand? Why do they say that?"
Kim: Because they don't understand it.

Thelma: Yup, I agree. Anytime ya get a hysterical female ahollerin you'll never understand, best accept ya won't and go buy her some chocolate. And roses. Also, say ya are plum sorry. And ya won't do it again. Then get the hell out of there until the mood passes her by.

Kathleen-if anyone ever says that to you again say "try me." Sometimes people like to be coaxed...a lot.

Louise-Darlin? Don't say nothin. Just sigh an shake yer head and tell her ya aint good enough for her. Then get tha hell out a there. She'll find herself all lonely and havin feminine needs an such..in time she'll realize it aint always in tha understandin, but in tha doin. Ding dong! bootys a callin!
"Why do some females expect a male to read their minds? Why don't they just state and specifiy what they want?"
Kim: I blame it on Edward, the vampire. Fiction, both in movies, television and books like Twilight make women think that if a man really loves a woman, he will get her, understand her and fulfill her. They think that's real and haven't been sat down and explained that the only way a woman gets what she wants is to be point blank upfront about it. It saves a lot of time and a lot of heartache to just ask and be done with it. Of course, that presumes she will, in fact, know what she wants.

Thelma: Some women are crazier than bedbugs. Than my Louise's beloved Baretta. Than a wolfe howlin at the moon. Of course, I am a big believer in askin for what I want and then takin it. Seems to me it sure beats beatin around the bush. Listen, though, some women cain't help it. They don't mean no harm by it. They ain't never considered how damn silly that sounds. Turn it around on her and ask her how come she don't get you? How come she don't do every little last thing ya been wantin all without ya havin to blink for it. Nah, that'd piss her off, just think it and grin.
Be direct with her, but sweet. Tell her ya care about her and want to make her happy and you could use some input.

Kathleen-I think that it is considered a stigma to state exactly what you want as a woman-that some how it removes femininity. Silly isn't it?


Louise- Now I don't have no problems expressin what I'm feelin an such. So I got me one a them "honk if your horny an whatnot" bumper stickers..lets me know what other folks is thinkin on. Gets damn noisy at times with all the honkin an wavin..but at least I know what folks is feelin. Pretty damn horny! Thats for damn true!
"If their is a way to read their minds how do you do that?"
Kim: If you really know her well, she's been honest about what she wants, when she wants it, how she wants it, then you apply those things to the situation. If you know she doesn't like it when you make a big purchase without asking her thoughts about it, you know that to demonstrate you care, you should let her in on the decision. If you know she likes roses on Valentine's Day, then you should get her roses. It's really that simple. If you have difficulties remembering things, taking notes, making reminders for yourself are okay. You have to use whatever tools you need to so that you can demonstrate you care. You need to be upfront, too, though, in a nonconfrontational way. If you don't understand, ask when you are both calm, prefacing it with the fact that you don't get it and could she please elaborate.

Thelma: Been with my mamma for sixty years and while I gots me a fair idea of when I need to stay the hale away from her so she cain't smack me with the walker, I ain't figured her out yet, and she gave birth to me. Mind-readin is a myth. NTs ain't got no better a theory of mind in most cases than anyone with autism has. Went over and read some of them posts at the forum ya linked to Kim with. Gotta tell ya, they strike me as whiny dumbasses who wanna feel superior. Don't pay em no nevermind and ifn your significant other thinks talking about your personal business like that is okay, tell her if she cared for you, she'd work it out with you, and a head shrinker if ya need some extra input. Ain't no good can come out of that forum. Nosirree.


Mamma H: Gonna say my bit in one spot. The raisin's warmin back up, so I ain't got me lots of time to play the interweavin game.

Here's what I think about relationships. Most the time they are a huge pain in the ass. The rest of the time makes up for that. If you picked yourself the right one, if you both are in it for keeps, then you work through the rough times. You do that by making allowances for the other person. If one person is inflexible, it ain't gonna work.

Most important thing you can do. Both of you. Decide to let go of the bad shit. Don't hold the other in contempt. Looked at that forum thing, too. Big thing I noticed was the contempt the autistic partner was held in and how they all thought they was superior. Those aren't good relationships. They ain't the thickandthin relationships.

Kathleen-what Kim said. Plus figuring out body signals..i.e. rubbing head means headache, rubbing eyes means tired, kicking off shoes and flopping down in chair means she had a busy day..things like that

Louise- givin tha woman what she wants when she wants it! OOOOH I like tha sound a that!


Raisin- Son, if you find yourself a woman, a womanly woman...full of life and zest..like my Hazel..You grasp on and take the ride of your life. I do not pretend to understand what my lovely flower feels or wants at every moment. I love her and respect her and pray to all that is holy that my heart or my little blue pills do not run out. I give and she receives and vice versa. It can be consuming. Alas, that is what happens when you have met your true love. Hazel, my dove, my saucy little giblet..come to me, the night is young, the boudoir awaits, come my cheeky little chicken! Are you ready to be plucked? Let me be your bandy legged rooster..pass me my walker and allow me to strut for you.



Emperor-I must say, that the best advice may come from books. I have found in my experience that the works of Sappho may aid you in your journey.

Another Brush with Spring

While we wait for spring to show up, and my writing partners to conclude their portion of the latest cross-posting between EDHF and CAoA, I offer you this:



2/25/2010

Oh, AoA, you, with the trolls, sheoples, and the whole denying thing.

A fly-by post, if you will, as I head off to bed. I hate to admit it, but I now find the antics of AoA more sadly amusing than anger-stirring. I wrote earlier this week about assessing the state of rationality of one's opponents and adversaries and deciding just how much time and attention they really warranted.

AoA can no longer be taken seriously (not that they ever had much going for them, but whatever cache they had is squandered). In their short three year history, they've become laughable. Today cemented it. Anne Dachel calls Roy Grinker an "autism denialist." Stagliano, never one to stand by in the wings and let someone steal her limelight, had to chime in tonight with a note that McCarthy's portrayal in Time was being covered at HuffPo: "They've just posted about it there and as you can imagine, it will soon be a Trollfest of vaccine injury and treatment deniers."

Let me, on behalf of all those the AoAers love to hate, be the first to say: you've outfonzed the Fonz and continue to jump that shark on a near daily basis.

I could never talk about AoA again and still stand daily as a counter to them, as do the hundreds of autistic bloggers and parent bloggers who choose rationality over emotionalism, science over woo, and acceptance over eradication.**for those who are are overly literal: acceptance of the autistic neurotype over the eradication of the autistic neurotype**

Also a note to Jonathan: you must not have read enough parents who have ACTUALLY written that death is preferable. That they wished their child had died. That would rather risk death than deal with autism. It runs the gamut at AoA (and on the biomed forums), from well-intentioned but loving and misguided parents to munchausen-by-proxy parents who want the attention for themselves and will put their kids through all sorts of the unnecessary and dangerous treatments in order to remain in the limelight, to hystrionic parents who actually state these things. Thank you for visiting.

....


I believe there are many parents who are desperate to help their children live better lives. I'm not referring to those parents. The folks running the show at AoA, the ring-leaders and their top commenters: I believe they love their children every bit as much as I love mine. I believe, however, that they see their children as less than, damaged goods who need to be recovered at all costs, whatever those costs be. Their emphasis is on gaining a child of their own imagination and making rather than in seeing the children they have and helping their actual children achieve their potential. I think these parents don't think about how their actions will be perceived or received by their children, how their actions can psychologically destroy their children.

There's a reason the saying "The road to hell is paved with good intentions." Parents do all manner of abusive, neglectful things to their children in the name of good intentions. It's an entirely inadequate excuse. "But I meant well!" Emotionalism rather than rationalism. Rationalization rather than objective assessment of the situation. Self-justification so that they can escape cogntive dissonance.

2/24/2010

Diversity and Inclusion: How Society Fails Us All, How We Fail Ourselves

Leave aside for the moment your immediate foray into divisions, into the ideas of a neurodiversity movement. Leave aside for a moment the split into camps of curing and not curing, the false dichotomies that permeate the online autism community.

I know I have readers who, quite frankly, read me to get their mad on, to get primed, to keep an eye on what that neurodiverse blogger is up to. So, I'm asking you to let all those divisions, that pissiness go for a second. And for those who read me to see what nugget of nonsense I can pull up at AoA, let's forget them for a moment, too. They're saying the same old thing again, nothing new there, nothing of interest to report. Blah.

Let's focus, all of us, those on my "side" and those against it, on kids, on schools, on disabled kids and their place in the school system. Let's pretend that curebies and NDs don't exist to snipe at each other. Let's pretend that we actually put kids first, because it turns out there are a whole bunch of folks on facebook doing just that. And we actually stretch the gamut from thinking vaccines cause autism and autism ought to be cured to the other extreme of vaccines don't and autism ought to be accomodated. Even more fundamentally profound is that we're all getting along as we advocate for children who have been physically restrained, harmed, and arrested for resisting that restraint. Oh my gods, can you believe that? We're working together to help kids and other parents. We're not worrying about the ideology. We're also crossing political and religious divides. Wow.

Does it mean we agree on all the other things? No, and we could probably argue about those things except we're focused on shit that matters tremendously to ALL of us. The school system is failing all of our children, from the neurotypical to the severely disabled. And it's failing our children because society collectively is failing our children.

How many disabled children are physically restrained by the very people we entrust to care for and educate them? If it happens in the public school system, picture the potential abuses, the actual abuses that unfortunately do happen in institutions. There are good people in all these places and they are working hard to do good jobs, and they should be recognized, but even good people do bad things, make bad decisions, make flat out dumbass decisions. And there are folks working with the disabled who have no business anywhere near the vulnerable.

Let me ask you, readers who stretch across all ideologies, all religions, all politics, what exactly are the big autism organizations doing to make sure that physical restraints are not used on the disabled? What is Autism Speaks doing to advocate for the disabled? For their treatment? For their protection?

What is SafeMinds? TACA? Generation Rescue? The forums many of you read and post at, what level of focus does the safety of our children in the school system play?

It isn't just disabled children who are at risk for adults making poor decisions regarding their care. How many stories have we heard of school systems gone amok and law enforcement departments foolishly handcuffing and arresting students for bringing motrin, for doodling on a desk?

It isn't just the schools that have folks making dumbass decisions, though, A parent decides to teach her child a lesson when he forgets to pack his lunch into his bag and tells the teacher to let him go without lunch; the principal makes the appropriate decision and feeds the child and the parent blows a gasket. Withholding food as a teaching tool is not acceptable.

By falling into woo, by failing to critically examine the potential consequences of our actions with our children, with other people's children, we fail our children, ourselves, and society. And it's so damn easy to fall for all manner of woo.

Raising kids and teaching them is often a serious pain in the ass and a cramp to one's style. Let's not pretend it's not. And we often want to do the least amount of work possible; it's human nature. Well, the least amount isn't enough. And it's time we admitted that as a society.

You want the school system to value your children, treat them with respect, make the schools safe places for them, then it really doesn't serve you well to go out bitching about what hell autism is for you as a parent and think those teachers and aides aren't going to think the same thing. You wanna view your kids as damaged goods to be recovered at all costs, treat them as objects, what the hell do you think is going to happen in the schools?

We don't fund our schools adequately. We don't train our teachers sufficiently. The training for classroom management is almost nonexistent. Most teachers have no training in learning disabilities. They get one developmental psychology course. As I prepare to teach lifespan this summer, I have to tell you, I can get a lot of information out to the future nurses and teachers who will take me, but I can not adequately arm them. They both need classes in behavioral management, as well. A class period in general psychology on classical and operant conditioning and another on social cognitive learning is woefully inadequate for knowing how to manage a classroom of kids, many of whom will have behvarioral issues, some of whom will have disabilities, and others who are frikking kids and being asked to sit for hours in desks doing rote work for which no application, no use, is taught.

We are failing our kids. And it isn't because we lack dedicated, loving professionals. Many of us are blessed to have wonderful instructors for our children, but they've got 20 plus kids, deadlines, curriculum objectives to meet, shitloads of papers to grade, and a woeful lack of assistance to make it all happen. And inclusion comes with a price. It is laudable, it is desirable and it should be. I want it to be. But I want it with the proper supports, so that what students see is not another autistic child being restrained, or acting out and being met with a lack of understanding and an escalation of behaviors.

We are failing ourselves when we do not demand more of ourselves as advocates for our children. And when we do not demand better resources for our school system, lower staff-to-student ratios, mandatory special education classes for all instructors as part of their licensing requirements.

We fail society when we do not move heaven and earth to make this world a better place for all of our children, for ourselves.

And yet, I take hope. I take hope in the fact that my girlies are in a wonderful school that sees them as people first. I don't take it for granted, though. I take hope in the banding together of disparate members of the online autism community who decided to focus on things that matter right now, and their willingness to fight for the underdogs.

I take hope because, while yes, there are people out there with less than admirable intentions, there are so many who are willing to do more, to work harder, to make a difference, and we're finding each other. I take hope because as we do so, we build on the respect for infinite diversity, we work towards inclusion, and we change ourselves and society in the process.

"Uncharted Territory of Autism"

Clay Adams has an excellent post at Comet's Corner today, linked through the title of this post. I hope you'll take the time to click over and read it.

2/23/2010

Discordant Chords in the Autism Community: Do We all Have Our Big Girl Panties On?

Sings my littlest garden girlie, "Good is better than evil! Good is better than evil!" She's got her counting bears lined up on the floor beside my chair, all 40 plus (it was a set of 50 but some have gone missing). She's got them whispering "Evil, pass on" down the line of them now. It's an operatic play she's engaged in, one of her favorite activities. So far, at six, she's not had to deal with the harsh realities of the world; when she plays by herself on the edge of a group, she's happily engaged and has no sense of being excluded. She still doesn't approach kids, but she'll play if a child comes up to her. Again, she's not feeling excluded, has no awareness of aloneness or separateness nor any sense that this is an undesirable state. She is happy playing by herself.

My bigger garden girlie is more aware, happy to play by herself, but wanting to join in as well. Figuring out how to approach, what to do, how to navigate that incredibly complicated girl world is rough, as we women can all attest, no matter whether we are neurotypical or on the spectrum. I suspect she'll follow my path; she's already begun to do so: gravitate towards boys who are easier to approach and adults who were inherently more interesting.

Either way, they both have to put their big girl panties on each and every day, and navigate this world with all its traps, pitfalls, and potentials. It's a heady, often frightening experience, and I empathize with each and every step they take. It's my job to arm them with the tools to stand up for themselves, advocate for themselves,  and figure out how to get what they want from life. Yes, they have issues, issues that make navigating this social environment more difficult for them than for those for whom social surfing is a breeze in comparison. However, I believe that armed with the tools for rational thinking and problem solving, it is possible to manipulate one's way around those issues successfully. It doesn't mean they'll be recovered; it doesn't mean they'll look, fit or blend in with neurotypical females. I'm supposedly NT, and I never fit. I preferred adults and books, and I found my niche. They, too, will find theirs.

We need to work harder as parents to all children to help them find their niches, where they will thrive rather than trying to make them fit in some yuppy mold. We need to teach them to rationally evaluate social situations, give them guidelines on what behaviors by others constitute true friendship, what is manipulative behavior, what is hurtful behavior. We need to teach them how to identify bullying behavior and what behavior by others is a legitimate criticism. We need to innoculate them so that they can stand up to bullies and say no, when to remove themselves from a situation when the bullying continues, how to navigate around the people in their lives who will take a dislike to them for whatever reason.

We need to arm them with the emotional strength to handle peer rejection and to accept that just as they may not like every person they meet, they will run into people who do not like them. And when they take their place, as adults in the community, and engage in activism on their own behalf and the behalf of others, to take accountability for their actions, to own their words, to recognize that just as one gives criticism, one is sure to receive it, and to be willing to consider that one can be mistaken and be able to own and correct those mistakes. In other words, we need to help our daughters learn how to put their big girl panties on each and every day (the same of course can be said for our sons and their underoos).

It would also behoove us as parents to teach our children that once they've ascertained someone as being not quite rational, they are better served by no longer engaging that person in dialogue. Unless they personally like the feel of pissing in the wind, as that's what it amounts to. Whether the need to address said person's actions or words is necessary is up for grabs. How big is the audience the person is reaching? How dangerous is the rhetoric? If the person with the inaccurate ideas is reaching a limited audience, then identifying the person and moving along is all that's needed. Continuing to pay that person any attention only inflates his or her readership and provides an audience that would not otherwise be there. I am well aware it can be irresistible, like rubbernecking. If on the other hand, the reach is greater, the woo dangerous, well, then it seems clear that this should be actively combated.

For additional perspectives on parenting, take the time to read Kathleen's post Myths Motherhood and "More Than" and Jeanette's High Expectations.

2/22/2010

Another Autistic Child Restrained, Resists, and Facing Charges

There's another child, this time out of Nevada, Missouri, who is six years old, who was restrained by a teacher, bit said teacher, and is now facing felony assault charges. You can keep up to date, obtain addresses and phone numbers to reach out to get media exposure for Dallas at the Dallas Obanion Facebook Page. Also see this new blog on Dallas.

Bandwagon: The Obligatory Wakefield Speaks Post

Yesterday, AoA finally broke the post-Wakefield resignation/firing/removal/tail-between-his-legs slink off silence. ScienceMom and Catherina's Justthevax blog was the first one I read covering AoA's coverage. Autism Nostrum writes about it beautifully and boldly. I love the "Age of Woo"! Orac covers it well.

With three capable blogposts on the subject, what's left to say? :-)

Okay, let's see. So Wakefield, according to Dan "I wouldn't know facts any better than Wakefield knows ethic if they bit me in the butt" Olmstead writes that Wakefield is moving into "a new phase of leadership in the autism community." Oy. First things first. I have always had an extreme distate for how they misrepresent the autism community as being squarely behind Wakefield. With over 1.5 million autistic people in the US alone, do you really think the autism community is squarely behind Wakefield other than to better aim their collective kicks towards his ass?

A fringe group of desperate parents turned sycophantic cult-following we're-not-worthies lap up Wakefield's nonsense as if it were manna from heaven. Just read the comments at AoA if you don't think that's an accurate rendering of the state of comments. These people are delusional. Couple the Wakefield's-so-dreamy-crowd with the rant yesterday by our favorite whine-fest mess and those accompanying wacky and threatening (planes, anyone?) comments and you've got a clear case for there not being much of a case left for the AoA crowd being anything other than akin to 9-11 Truthers, holocaust denying flat-earthers. In other words, they have spent their credibility.

 Wow. One cup of coffee and I really don't pull very many punches, do I? You want an even better let-me-tell-you-how-I-really-feel post? Go read Autism Nostrum! :-)

2/21/2010

Guest Post by Superdave: lack of familiarity with scientific wording

Age of Autism's latest

This is only one of many times I have seen the AoA take wording which is scientifically conservative, or only there to placate the very people at the Age of Autism, and make it sound like the CDC (or whomever they are talking about) is unsure about the certainity of Autism and vaccine research. This is just another example of the he "Only a theory " tactic used by creationists against evolution, though slightly more nuanced. It is simply impossible to rule out anything 100% and this statement reflects that.


In this case the CDC mentions on it's website

"There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth."

All that is admitted to by this statement is that the very vocal anti vaccine crowd has caused enough of a panic to keep to this research area alive. It states nothing about the certainty of the conclusions or even the nature of the risks that are being considered. Vaccines are only being implied as the impetus for this research.

Public Perceptions, The Misuse of Words, and "Acutely Autistic"

In an article on DNAinfo dated February 9, covering the murder of Jude Mirra by his mother Gigi Jordan, the reporter writes that Jude was "acutely autistic." That struck me as an odd phrasing, much like Handley's butchering (and other contributors over there at that bastion of hope and light), of the English language. The article itself leads readers unfamiliar with autism down the path of what can only be considered the poor-me parent syndrome. I get that people are intensely selfish and self-motivated, but the tendency for some individuals to make their children and their children's neurology all about the parent and what it costs the parent often amazes me. And when it is isn't the individual parent herself, it's others speaking about the parent. The reporter quotes a doctor, Marcus Conant, from California who had known Jordan for many years:
“The tragedy is that it consumes the mother, they become absolutely devoted to trying to find a relief for their child. She went to Duke, clinics across San Diego, consulted with every expert in the United States, her experience would outstrip everyone in New York. Trying to find some hope and found the hopelessness that everyone else faces,” he added.
If he were talking specifically about this one woman, that would be one thing, but he's generalizing out to all mothers of autistic children; it's just that Jordan's efforts were herculean, or more sysyphian, than the rest. And instead of being blamed for the child's condition as Bettelheim helped promulgate, we have here the mother recast from the cold, refrigerator mom to the desperate, heroic mom. Jordan's act of murder is recast as an act of extreme desperation, concern for what would happen to her son after she was gone, and yet short of the woman's attempted suicide, there's no reason to believe that precipitated the murder/attempted suicide.

Of course, Stagliano weighs in, explaining that parents are left with "a lack of a safety net." That's certainly not the case with a woman who is as well-to-do as Jordan, though. Stagliano ultimately decries the act of murder, noting that she "just can’t come up with any wiggle room for killing your child.” Plenty of wiggle room for the desperate jump down the woo-hole and experimenting on one's children in the need to cure or recover one's autistic children who was poisoned by vaccines or the toxic overload from the mother's pregnancy, though.

AoA could add that to their banner: we're for potentially deadly experimenting and all the colonscopies you can get but we draw the line at murder. That's no way to recover a child, and besides, it ruins the whole martyr look.

I know, snarky, but I blame it on only one cup of coffee.

Back to the idea that one can be acutely autistic, though, and the slipping of the English language by people too lazy to make sure that words mean what they think they do (ala Handley and "atomic stupidity" or that writer some months back with the sense of omenous cleansing).

Acute, as defined by The Free Dictionary, means:
1. Having a sharp point or tip.
Nope, acutely autistic doesn't work that way.


2. Keenly perceptive or discerning: "a raw, chilling and psychologically acute novel of human passions reduced to their deadliest essence" (Literary Guild Magazine). See Synonyms at sharp.
Maybe, but that's not how the reporter in the article about Jude and some parents are using it. I will note that if we were using it to denote those individuals on the spectrum who have a keen eye for details, that wouldn't have the connotation that the press and certan parents are trying to express.
3. Reacting readily to stimuli or impressions; sensitive: His hearing was unusually acute.
Again, if the press were talking about a tendency to find the world or aspects of it sensorily overwhelming, or that some autistics can see or hear more acutely, that'd be okay, but these parents and the members of the press using it see autism is total gloom and doom, either a death sentence or a path to martyrdom.
4. Of great importance or consequence; crucial: an acute lack of research funds.
Okay, yes, that would make sense as well, if the person using "acutely autistic" were indeed saying that the child's (or adult's) autism were of significant consequence. We'd all agree that it is of consequence. It still doesn't really work, though, as it's being used.
5. Extremely sharp or severe; intense: acute pain; acute relief.
There we go. Severe. That makes sense. A person can be severely autistic. We can safely assume that's what the person meant, even if we'd argue that it's a hell of a lot clearer to just say that Jude was severely disabled.
6. Medicine

a. Having a rapid onset and following a short but severe course: acute disease.
No. Even the curebies don't think it's a short disease that resolves on its own.
b. Afflicted by a disease exhibiting a rapid onset followed by a short, severe course: acute patients.
Same thing applies here. They certainly think it has an acute onset because of poisoning by vaccines (although how it would be acute when you think the mercury in you caused it in utero, I don't know).
It's also safe to say that the last two don't apply, either:
7. Music High in pitch; shrill.
8. Geometry Having an acute angle: an acute triangle."
Other than this reporter, are there cases where "acutely autistic" is used? ZReportage has a story entitled "Acutely Autistic - but Always Loved." I didn't see but may have missed where the use of term "acutely autistic" was used in the story itself. As for the story, it's well worth reading. Completely erases the first article. Of course, Kirby and AoA capitalize on this story and use it to push the "tidal wave" of autistic children coming of age.

On a side note, I did find a journal article from 1980, "Acute onset of autistic features following brain damage in a ten-year-old," in which the child is described as the "sixth child of dull parents in a disorganized family." Oh my.

As a last stray thought that some readers may find amusing and help you let go of wondering why I fixated on the use of "acutely" just days after Handley's use of "atomic" (with a reminder that I do teach college English), you'll be amused to know that Stagliano's use of the OSR#1 on her children's breakfast appears on the LA Times keyword toxic cleanup page.

2/20/2010

David Brown's Latest at Evil Possum

David Brown has a new post on his Evil Possum page entitled The "Hairy Biped" Attacks!: Handley vs. Reality.

2/19/2010

And Now For Something Completely Off Topic

Every year (or more), a cat moves into our garden. The friendly cats move into our house a week, a month, or a year or two after becoming the garden cat. This winter's cat was Aphrodite. While we tried to integrate her into the house, she has a prediliction and downright fondness for peeing on things instead of in the litter box (unless she's in the utility room, where she will only use the litter box). So, much as I have fallen in love with her, we've accepted she can't be a completely indoor cat, so she is outside on days it is warm enough and inside on days and nights, comfortably ensconsed in the large utility room.

Today was a rather lovely day, so she was still outside on the porch (she has a house out there) when we heard a racket. Upon opening the door, figuring she was climbing the screen to get in, we found her engaged in an enounter with an opossum who had taken up residence in her house. Aphrodite is now in her warm bed in the utility room and the possum is in her house.

Listen, God sent me a chicken one year that roosted on our porch and wanted to come inside. I drew the line there, gave her to a friend who keeps chickens. I absolutely draw the line at possums.



I'm serious. Doesn't matter if it's litter trained, either. It is NOT coming in. Neither is the skunk that's decided to live under one of our sheds. I have boundaries. I do.

A New Autism Study and the Question of "atomic stupidity"

A new study out of the University of California on the "Emergence of Early Behavioral Signs of Autism" is getting attention from science-based bloggers and the AoA crowd. This study found that "behavioral signs of autism are not present at birth, as once suggested by Kanner, but emerge over time through a process of diminishment of key social communication behaviors." I don't know what the need to throw Kanner in there was all about, nor why it's relevant what someone first describing the condition nearly seventy years ago has any relevance on what we know today about the condition. Our conceptions of autism have adapted and expanded over time. To hold to Kanner would be like holding to only what Darwin theorized. Science moves forward; we tip our hats back at the past, we note it, we appreciate it, but we don't hang our hat on it.

Novella wrote about this study at Science-Based Medicine and Handley immediately jumped in to rebut it.
Handley accuses Novella of  "atomic stupidity," and if there's one thing Handley knows well, it's all varieties of "stupidity," right? Unfortunately, knowing it, more in the biblical sense than in being able to recognize it, leads to Handley's latest bit of it at AoA. Why deal with the Wakefield and Krigsman fall-out when you can deflect it onto Novella and Orac? I think we can all rest assured that Orac is not beloved by the AoA personages. Novella, though, only rarely makes it on the radar with Handley, who likes to pretend he's never heard of him each time he mentions him.

Before moving back to the study and links to bloggers who capably discuss this study, I'd like to focus on Handley and the idea that Novella has engaged in "atomic stupidity."

I don't think Handley's using atomic right in any sense of the word, even if we can connote what he means from the context. Atomic is variously defined as:

"Indivisible; cannot be split up."  Define That
"–adjective


1.of, pertaining to, resulting from, or using atoms, atomic energy, or atomic bombs: an atomic explosion.

2.propelled or driven by atomic energy: an atomic submarine.

3.Chemistry. existing as free, uncombined atoms.

4.extremely minute." Dictionary.com

What does Handley think it means? I don't think he meant tiny, do you?  I assume he means collosal, tremendous, enormous stupidity. Stupidity that is mind boggling. Stupidity that is awe-inspiring in its power. What was this overwhelming, overpreening stupidity? Novella wrote: “Many children are diagnosed between the age of 2 and 3, during the height of the childhood vaccine schedule… The true onset of autism in most ASD children likely began a year or two prior to the vaccines that are blamed as the cause” (taken from AoA for simplicity). Oh my. Seriously, that's Handley's nitpick and the start of an article in which he claims it's the first time he's read Novella's blog. Even though he wrote a blog on April 22, 2009, about Novella?

For an  in depth look at the study itself, Novella, despite Handley's allegation of "atomic stupidity," recently wrote on it. After Handley attacked, Novella rebutted and refined his statement, noting that he could have been more precise. Today, Orac weighed in. Emily ably discusses the study, as well. All three of these individuals (discarding Handley) and so many of the commenters at Orac's and Novella's blogs took on this topic in an informative, often entertaining, and interesting way. So well in fact that I won't reinvent the wheel when the topic has been dealt with as well as it has. I will, though, share my comment left at Orac's:

It isn' that autism is a condition which develops over time; that's a semantic problem. Autism is a condition that becomes apparent over time. These two sentences are vastly different in meaning. Autism appears to be a neurological difference set by birth that as developmental milestones are not met or gradually become delayed compared to the child's cohort, the condition becomes manifest and diagnosable.


Memory is faulty at best and denial ain't just a river in Egypt. Having three on the spectrum, I can relate anecdotally that you can know the signs, know what to look for, admit your child has issues and still not be willing to call it autism until left with no choice.

So, there's my nitpick. The other is with the whole idea that autism is a disease. In a strict medical sense, yes, it does meet the criteria, but since the public does not use the same operationalized definition of disease, and because of the negative connotation it has, neurological difference is much more accurate and less pejorative.

A succinct working definition of autism, then, would be this: autism is a neurological difference that is set in place by birth which becomes apparent as early as six months to a year in many cases. And no one associated with the mainstream field of autism research or clinical practice would quibble or be surprised by this working definition.

2/18/2010

Self-Justifying: Wakefield Goes, but the Cult Follows

AoA has yet to post on Wakefield or Krigsman's apparent departure, but plenty of AoA and fervent Wakefield supporters are speaking out on forums and facebook pages. The fall-out is still unfolding, but we can expect a few things: Wakefield, like a cat (sorry, cats), will emerge on his feet. His core believers will not abandon him. They will, in fact, celebrate him, his hero status, and his fall as martyrdom to the cause. They will become more entrenched than ever before, hard as that is to believe.

The powers that be at AoA, though, now, that's interesting. I predict they will go where they see the money is. They quit actively supporting or mentioning the Geiers last year. I think that this will be the case with Wakefield; he will quietly fade away from their official rhetoric, although they will allow commenters to lionize him.

Wakefield Removed From Thoughtful House Research Staff

Orac,  LBRB, and Justthevax  have covered the apparent resignation/removal of Wakfield from Thoughtful House. Thoughtful House's staff page no longer features Wakefield on it. Even the FAQ page has Wakefield removed. Brian Deer notes on his website that Wakefield was fired. Thoughtful House has not posted a public press release on its website, though. And AoA is quiet on the matter, nary a peep, finding it far more important for Handley to chew on Novella and pretend he'd never read Novella before writing his present article. Except he's badmouthed Novella before.

Personally, Wakefield's departure from TH, while a welcome development, does not answer the questions regarding TH's practices themselves. TH bills itself as a non-profit:  "We are a non-profit organization that provides medical and educational support for children affected by childhood developmental disorders (CDDs). The focus of Thoughtful House is to provide the best, most up-to-date treatment for patients and to conduct medical and educational research in order to ensure continuing improvements in the quality of treatment available to all."

Having looked through their tax reports, looked at their costs for clients, I'm having a hard time reconciling the clinic itself and its billables, some of which are at around 500 dollars an hour and seeing where these billables are included in the non-profit. Also, TH's payments to staff as reported on the tax forms are woefully inadequate to cover that area as well. I have to conclude that TH appears to be a nonprofit with a for-profit medical clinic within it that does not in itself have tax exempt status.

There are too many things not transparent at TH. And the fact that the board members aren't listed on the site, either, is interesting. Instead you have just this message: "Our Board has a track record of discovery, innovation, integrity and dedication in seeking to address what is possibly the most important and far-reaching healthcare problem that confronts society today." Were the board members listed before (they are on the tax forms) and removed to prevent easy ability to locate, contact, and complain?

What is really going on at Thoughtful House and why weren't parents asking this all along?

2/17/2010

Countering: Hah, this works, too!


See, sometimes you just need a break from gloom, doom, and folks who insist in being mired in negativity. In this way, as well, we can as a community counter the sourpusses of AoA.

Have pictures of a past spring? Play along, and add them as a post to your blog.

Have a moment to shout out to a parent or autistic person who you think deserves a high five for a positive attitude or a scrappy attitude? Add it to the picture!


I have so many folks that it seems like a slight to not note them all. So, if you haven't seen my blog list, scroll down and find it. If they're on there, I think they have something awesome to offer.

But a special shout out has to go to the first two bloggers I ever read and who play an important role in my life:

Kathleen at Autism Herd.


And a hearty I hope spring soon blooms where you are to all my internet friends.

And to those other bloggers who give me my material, I offer the sincerest wish that spring will bloom for each of you, that anger will lessen, that depressions will lift, that clarity of mind will come your way, that you will each find the simple beauty in a single moment, that you will hold it to you and cherish it so that it nourishes you through the cold wintery times-- it seems to me Steinbeck had something with the whole "this is the winter of our discontent" thing. You've been there long enough.

2/16/2010

Fear and Loathing: And it All Implodes in an Orgy of Hate (Except that it Doesn't, really, and Doesn't Have To).

This just in: AoA writes the same stuff this week. Somehow Wakefield is a prisoner who manages to dig his way through shit to escape the whole pharma/industrial complex, leading the rest of the merry band of maligned people into the light. I could go on with the excrement one-liners, but I know someone who's way more into that than I am. Perhaps he'll wander by and offer some.

In other news, Mitchell and others still really hate neurodiversity. Rinse, repeat.

Still others are pissed about the new DSM-V guidelines. Others are happy. Some are meh.

And many autistic bloggers denounce those autistic individuals who think their autism flavor is an "endowment." Good for them. Autism is a diverse spectrum, and if you're not stuck being bitter about where life landed you (either as a parent to someone on the spectrum or an adult coming to terms with a diagnosis), well, it's a whole lot easier to read the research (in all its varieties, some of it good, some of it god-awful, some of it eye-bleeding, no-shit obvious, and some of it scary in how the researchers got it through an IRB) and separate the wheat from the chaff. Oh, and to ignore all the personally irrelevant junk, too.

Just a reminder, one that people tend to forget for some reason, people on the spectrum are PEOPLE. They hold lots of things in common with folks with different neurotypies: some of them are assholes. Never hurts to remember that fact. Even more of them, though, are regular, mostly well-intentioned people doing their best to get through the day (and by regular I mean the commonality that most people share, regardless of issues). And some are truly spectacularly graceful people who rise above, who excel at grace and compassion. We should try to avoid the first category, accept our likely status in the middle, and aim for the latter: grace and compassion.

Bright spots: There are some lovely people doing some really good work out there and they aren't hard to find.

Several disability (and disability rights) bloggers followed Dave Hingsburger's call to write about love and sex. They made for interesting, sweet, and refreshingly candid readings on the intersection between love and sex, as well as loss, the absence of sex or romantic partners, the want of, and more.

Zakh Price's due process hearing went well; he'll get "compensatory educational services." One thing down, more to go.

Several grassroots organizations led through facebook and other websites are working to change the world, change the legislation, change public perceptions. And all this in spite of the divisions of the autistic community. In fact, the Zakh Price and Gomey cases showed conclusively that where people's emphasis is on helping those in need that ideology is irrelevant. Parents who stretched their own spectrum from biomed and anti-vaccination to evidence-based and vaccinating bonded together to work for Zakh and Gomey. The extremist edges of those camps stayed on the sidelines letting their ideology guide their actions. That's okay, though. There are plenty of folks for whom making a positive difference outweighs the need to rightfight. And if that isn't a thing of wonder (see Thelma's Wonder Workin Power on RFID), then what is?

Feel free to chime in with your positive and uplifting thoughts. What wonders have you seen recently in the autism community that disprove the idea that fear and loathing dominate (and that some things and the individuals who espouse those views are working themselves right into irrelevancy)?

2/13/2010

A Guest Post: Animal models and Autism by Superdave

Superdave is a PhD student in biomedical engineering and holds a BS and MS in the field. He likes to play guitar read and write blogs in his free time. He became interested in the Autism issue after realizing that dangerous childhood diseases were making a comeback in the US and Europe.



...

In the Age of Autism blog, JB Handley repeatedly referenced a now withdrawn study by Hewitson et al. in Neurotoxicology which looked at vaccinated VS unvaccinated monkeys. This study has been analyzed by this blog and by Orac and I think it goes without saying that it was pretty bad. While there were numerous inconsistencies with this publication the question it raised for me for was, how appropriate is a monkey study in the first place? This question is important because monkeys are some of the most expensive, difficult to use and controversial animals to use in research. If using a different animal model is effective or if using animals to model autism in the first place does not work very well, then a study which uses monkeys in the way described in Hewitson et al. is unethical at best and useless at worst.


It is worth pointing out here that the term animal model can mean slightly different things based on the concept of the experiment. An animal can be bred to be strongly genetically disposed to a certain condition or disease. This is often done through genetic manipulation of the animal which causes a particular gene to be suppressed. For example, people with mutation in the Nlgn4 gene have autistic behavior, and mice bred such that this gene is turned off also display autistic behavior. This animal is referred to as a “knockout”. It is useful for study because it gives you an animal which you can be fairly certain has or will develop a particular condition. Using this animal, therapies can then be tested. Another way one can refer to an animal model is in an experiment where a healthy animal, commonly referred to as a “wild-type” (meaning not genetically altered) is exposed to some experimental process to observe the outcome. The Hewitson study performed this sort of test.

In a search of recent publications to see what sort of model was preferred in current research, it is pretty clear that rat or mouse models are the most common. Llaneza et al reports in Physiology and Behavior , “Robust, easily replicable assays have been developed to quantify social behaviors relevant to ASD (Autistic Spectrum Disorder) in mouse models”. This means that for a researcher trying to evaluate whether an experimental condition has treated or caused ASD, there are tools which exist to clearly verify the outcomes of such experiments. Llaneza also reports on several methods which can be used to create mouse models for ASD, mainly through the creation of knockout species which results in mice that have ASD symptoms. So it appears there are robust tools for performing many ASD experiments using mice, but what about other animals? Llaneza does not comment on the use of primates or any other species for this purpose (Llaneza et al. ).

Primate models however, do exist. Machado and Bachevalier discuss the use of macaque monkeys for the purposes of studying human developmental disorders (Machado, Bachevalier 2003). Their analysis is complex and far too detailed for the purposes of this entry but it is a fascinating glimpse at the development of a species similar to humans. Of relevance to us is a discussion of the best developmental stages for testing, where best here means stages in which there is rapid development. The first of such stages is the two week period of the infamous monkey paper. However this period does not contain the kind of social developments that are characteristic of autism. These behaviors are described as reflexive behaviors, motor and grasp, and aversion to staring; only the last one can be considered even closely related to a social development. By the very next week these animals begin to exhibit social vocalizations, the very kind of thing one might thing is a good test for autistic behaviors, but by this time in Wakefield’s study, the animals were dead. Also of note is that these developments in the macaque are related to the growth of the amygdyla, a structure in the brain related to emotional and social behavior. However, in the human infant, these structures are more developed by birth than in the macaque. Still, the conclusions of Machado and Bachevalier state that the macaque can provide an excellent model for examining social development disorders (Machado, Bachevalier 2003).



Amaral , Bauman and Schumann summarize and discuss the results of various studies in which primates were used to study autism (Amaral, Bauman & Mills Schumann 2003). In this study, the amygdyla was surgically impaired and the behavior of the primates was observed. They conclude the amygdyla is not likely to play a large role in the social implications of autism but rather plays more of a role in mediating feelings of fear. However this finding is not relevant to the discussions here, but rather the methodology. These studies discussed evaluated the results of their animals at 2 months and 6 months of age. Given the discussion of macaque develop by Machado and Bachevalier, this makes sense, as by that time macaque monkeys should have obtained clear social milestones. Again, this is much longer than the time the monkeys were evaluated by Wakefield and his colleagues at thoughtful house.



For the sake of comparison, I read another study concerning autism and rhesus monkeys. This one was particularly odd me to me but that’s aside from the point. It is titled “Stereotypies and hyperactivity in rhesus monkeys exposed to IgG from mothers of children with autism”, by Martin et al. which comes from the M.I.N.D institute at UC Davis (Martin et al. 2008). This study used a total of 15 monkeys, 4 injected with immunoglobulin from mothers of children with Autism, 4 injected with immunoglobulin from mothers of children without autism, and 5 were not injected with anything. The animals were injected prenatally and followed after birth for an entire year. I can’t really comment on the overall design because behavioral studies are really not my thing but at very least they followed the monkeys for a much longer period of time and allowed them access to their mothers, which is important for sociological development (Machado, Bachevalier 2003). However, they also used a small amount of monkeys for this test, which means gleaning a lot of meaning is difficult. The conclusions of the paper were, as taken from the abstract

“Rhesus monkeys gestationally exposed to IgG class antibodies from mothers of children with ASD consistently demonstrated increased whole-body stereotypies across multiple testing paradigms. These monkeys were also hyperactive compared to controls. Treatment with IgG purified from mothers of typically developing children did not induce stereotypical or hyperactive behaviors. These findings support the potential for an autoimmune etiology in a subgroup of patients with neurodevelopmental disorders. This research raises the prospect of prenatal evaluation for neurodevelopmental risk factors and the potential for preventative therapeutics (Martin et al. 2008).”

This study seems a little weak to me, but the point is that they seemed to be more careful in their evaluation of the monkeys used than in the Hewitson study. Also note in the Hewitson study, they cite a reference which indicates taking the monkeys away from their parents was correct, which seems to contradict the reference I found. Hewitson’s reference however is from 1992 while mine is from 2003.

So what are the final conclusions of this analysis? The use of primates for behavioral studies certainly has advantages. They are more similar to human physiologically and socially and would seem to be a better fit for a study involved with a neurological disorder. However there are several caveats. For one, it’s simply easier to do a large sample size study with mice or rats because they are smaller, have a shorter life cycle, and easier to care for. We know that there exist useful models that are well established for this purpose. It also does not seem to me that the protocol for using monkeys in these sorts of studies are as well established or standardized. If you are going to use monkeys, it should be for an experiment that needs monkeys. So in conclusion I would say that yes, it can be appropriate to use monkeys for research involving autism, but that these studies must be carefully designed to take advantage of the usefulness of primates. The study that Hewitson performed seems like it would have been better served to have used mice or rats instead, especially since they only observed the monkeys for a short amount of time. Lastly, I think it is worth pointing out that even though these models may work very well, they are not studies using human and no animal model, primate or rodent can ever do as a good a job.



Amaral, D.G., Bauman, M.D. & Mills Schumann, C. 2003, "Review The amygdala and autism: implications from non-human primate studies", Genes, Brain & Behavior, vol. 2, no. 5, pp. 295-302.

Llaneza, D.C., DeLuke, S.V., Batista, M., Crawley, J.N., Christodulu, K.V. & Frye, C.A. "Communication, interventions, and scientific advances in autism: A commentary", Physiology & Behavior, vol. In Press, Corrected Proof.

Machado, C.J. & Bachevalier, J. 2003, "Non-human primate models of childhood psychopathology: the promise and the limitations ", Journal of child psychology and psychiatry, and allied disciplines, vol. 44, no. 1, pp. 64-87.

Martin, L.A., Ashwood, P., Braunschweig, D., Cabanlit, M., Van de Water, J. & Amaral, D.G. 2008, "Stereotypies and hyperactivity in rhesus monkeys exposed to IgG from mothers of children with autism ", Brain, behavior, and immunity, vol. 22, no. 6, pp. 806-816.

Keep Sensationalizing Autistic People That Way, AoA, and Yeah, The Dumbasses You're Trying to Scare Will

You know, I could do an in depth post, compare crime rates in the general population to the autistic population, to the disabled population in general, and we know that we'd find that autistic people are far more likely to be victims of crime than perpetrators (because I have read the research; I'm just too lazy to track it down right now). Age of Autism's illustrious managing editor just has to ask today: "Is every criminal who seems odd or remote going to be called 'autistic.'" and "Will 'Autistic' Become Synonymous with 'Dangerous?'"

Oh, for God's sake. Listen, when all you do is trumpet the insane, wacked out ideas that autistic kids are poisoned kids who have been stolen away by big pharma and must be recovered at all costs, that the wacko docs who experiment unethically and potentially illegally on them are frakking heroes, that autism is so bad that moms and dads kill their autistic kids, and worse yet, if they don't, their autistic kid will kill them, what the hell kind of message do you think you are sending? I mean, really? Tell me, why don't you?

Age of Autism promotes a vile picture of just about everyone but themselves, they, the ever-valliant martyrs willing to do anything to recover their lost children who vanished in every way except physically after being vaccinated by the evil pediatricians. And anyone who stands in their way is in the big government/pharmaceutical collusion to render an entire generation of children autistic.

And somebody explain to me why three of the most prominent male commenters on there have damn near identical stories? And no one over there can clue in on this? Of course they can't. They can't stand a second of cognitive dissonance.

Keep it up, AoA. Keep casting autism as a fate worse than death. More than a few of your children will "recover" sufficiently to read your words some day.

West Texas Snow: Here Thursday, Gone Friday

2/12/2010

Because The Monkeys Tell Me So

Monkeys are all the rage these days. Handley practically foams at the mouth over them. Somebody, please, show him the damn monkeys already. It's not just monkeys that are the rage, though. Shifting goal posts are as well. Wakefield, lionized by the anti-vaxing parents for showing them that it was the measles in their children's leaky guts (ack) causing all their problems, now is all about the HepB in the monkeys showing it's that HepB vax at birth that does it. So, while some anti-vaxing parents still scream about the measles, Wakefield, and his study showing the parents are right, other prominent (really loud) anti-vaxers stridently proclaim Wakefield did no such thing. It was a case series, damnitalltohell! And it was about the gastro issues! He never linked autism to the MMR, no he didn't! All while touting the monkeys and the HepB. Okay.

Folks on the outside looking in at this gyrations would assume that these tortuous leaps bypassing logic  must be incredibly hard to do, but I doubt the folks twisting in the wind are even aware of how they twist, turn, contort.

So, monkeys are everywhere now and proof positive that it's the mercury in the HepB shot given at day one to blame for autism. That's okay, though, because thank the heavens, there is a cure! Clay detox baths! Woohoo! But don't worry when it doens't work immediately. I mean, Jenny didn't give up, did she? She kept plugging away!

What is with the monkeys? And the number 14? Mike Adams thinks there are 14 monkeys. The nutter person recommending clay baths to cure autism thinks it's 14 monkeys. Jenny McCarthy and Jim Carrey (who no way wrote that press release, really?) think it's 14 monkeys, and Age of Autism apparently agrees with them since they ran it and ran it with the title of "A Statement from Jenny McCarthy & Jim Carrey: Andrew Wakefield, Scientific Censorship, and Fourteen Monkeys":

"We urge the media to take a close look at the first phase of the monkey study discussed above and to start asking a very simple question: What was the final outcome of the 14 primates that were vaccinated using the U.S. vaccine schedule and how did that compare to the unvaccinated controls?"

Hewitson et al. (2009), though, had 20 monkeys. 13 of them they gave HepB at day 1, 7 they didn't. Not 14 monkeys. And it's irrelevant.

Why, you ask, is this whole 13 monkeys, 14 monkeys irrelevant? Well, see, here's where it gets really interesting. If you want to read this study, you go here: the 14 studies site by Handley. Thoughtful House has a press release on how it was published online in September 2009. I went to the journal itself, though, straight to Neurotoxicology to look for the article since it's getting all this attention from the anti-vaxers as proof that it is proof of mercury causing autism. Guess what? It isn't there! Don't believe me? It's been withdrawn.




You think that Thoughful House has a press release up on this? Nope. Age of Autism? Nope. Generation Rescue? Nope.

In fact, it almost looks like they were all trying to divert attention from the fact that this piece was withdrawn. Guess there will be no part two to the study, huh?

Oh, but if you wanted to quote the withdrawn from press UNPUBLISHED study, here's how it would  be sited, according to the copy released at 14 Studies:

Hewitson L, et al. Delayed acquisition of neonatal reflexes in newborn primates receiving a
thimerosal-containing Hepatitis B vaccine: Influence of gestational age and birth weight, Neurotoxicology (2009), doi:10.1016/j.neuro.2009.09.008

2/11/2010

Because it is snowy

Olly Olly Oxytocin Spray

Oxytocin spray is another "treatment" in an already dizzying array of potential alt med treatments for autism (and for making you a more successful salesman). While Autism Diva was writing about it back in 2006, it hadn't really disseminated the autism biomed forums and boards. That appears to be changing. There are various suppliers of oxytocin spray, and some homeopathic versions (so, as long as it's truly homeopathic, we can all relax since a nice water shot up the nose ain't gonna hurt you; it might sting if it has no saline, though).

The side effects of oxytocin can be severe, noted Autism Diva (no need to reinvent the wheel):
"For example, when a patient with obsessive-compulsive disorder used it for 4 weeks, the patient showed clear improvement of that disorder. However, the patient also developed severe memory disturbances (oxytocin apparently helps mothers forget the pain of childbirth), psychotic symptoms, and marked changes in blood sodium levels, which may have masked the obsessive-compulsive symptoms."

James Ottar Grundvig wrote about oxytocin as an autism treatment recently, interviewing Dr. Hollander for the piece. According to Dr. Hollander, oxytocin:

"It stimulates social memories, reinforces reward. My research into Oxytocin came from translational research: the study of Oxytocin in animals and how it might be applied or translated to humans."

In 2003, Hollander et al. published a study in Neuropsychopharmacology which looked at autistic individuals and whether IV oxytocin would reduce repetitive behaviors. Their sample size was 21 individuals. According to Hollander et al., each "subject served as their own control" (p. 195). On the day of the 4 hour infusion, no change in repetitive behaviors was found in either the placebo or the oxytocin groups, although over time, the oxytocin group saw a statistically significant reduction in the behaviors they examined. These behaviors were defined as "need to know, repeating, ordering, need to tell/ask, self-injury, and touching" ( p. 195). The authors note that there was no significant differences at p<0.05, but there were at p<0.10.

With this small a sample size and how far out they had to go to find significant differences, it'd be a real stretch for me to be willing to hook one of my children up to a four hour infusion of oxytocin. Fortunately, that doesn't appear to be what the biomed parents are doing, though. 

At least some of them are pissing their money away on Oxytocin Accelerator, the homeopathic version which will just waste 20 dollars of their hard-earned money a month.  No harm no foul there.

What about additional research? Is there a potential role of oxytocin in emotion recognition? Baron-Cohen and fellow researchers are putting together a study to examine whether nasal oxytocin spray will help with emotion recognition:

"As far as is known there are no side-effects of the oxytocin inhalation method, which has been used safely by our collaborators in Z├╝rich in typical individuals. We are interested to confirm if oxytocin affects social skills (especially empathy) positively and we also wish to test if oxytocin has any negative impact on areas of strength in autism (such as attention to detail). This study is still being considered for ethical approval as a nasal spray oxytocin method is not licenced for use in the UK. As with all treatments or interventions for autism, it is important that there are careful evaluations of their benefits and of any unwanted side-effects so that parents and clinicians can make informed choices about their use. Such evidence is collated on a central website at www.researchautism.net."




So, we don't know if this works, we don't know yet if it's safe. Why would you use your child as an experiment?

2/10/2010

A Week for Chuckles: Why You Can Overdo a Refrain

Handley, no doubt, as he typed what he thought was a clever, impassioned piece about umm, monkeys? (Oh and how Wakefield is the king of them), got louder as he yeah boy'd the computer screen until at the end he was standing, spittle dotting the computer screen, as he fist pumped the air. He forgot, I'm sure, that there would be readers who would inevitably compare this mental image of Handley to that of Tom Cruise, of couch-jumping, pchychiatric-medication denouncing fame. I think Cruise just rose in my estimation, to be honest.

12 times including the title. Wow. Indeed, one could argue, show me the guy behind the curtain, the great and powerful Oz. :-)

Wakefield, monkeys, and Handley. One of these doesn't belong. Can you guess? That'd be the monkeys.

2/08/2010

Another Moment for Hilarity

Real life demands preclude any long blogging or digging, so you'll have to settle for these nuggets:


"Dr. Jason...please listen to Dr. Wakefield set the record straight. He is a worldclass researcher. It takes significant courage to withstand the criticism slung his way over the last decade."  --Shelley Reynolds



"Wakefield was framed just as we thought!" --Moffie!

"It is not the aim of Autism Politico to engineer autistics – who are already social rejects- into first rate boors. Merely to provide them with one possible means to raise themselves in the estimation of others." --Autism Politico (while not funny, the sheer testicular fortitude of the "sophisticated" editors who have such hate for autistic people has to be good for a snort of disbelief)

2/04/2010

A Brief Pause for Hilarity

"So far the only thing proven to cause autism is vaccines." -- so speaks Dugmaze.
"I think we're worth studying." -- Stagliano.



You may now resume your daily affairs.

Blathering Nonsense and an Epic Fail: Age of Autism

Yesterday, AoA was busy. Boy, between Stagliano's piece on Huff, which I broke down here on Countering, and her appearance on CNN (thank you, Orac, for dissecting that so eloquently that I feel no need to subject myself to repeated viewings), she must be feeling pretty puffed up as she works at rewriting the AoA history. Sure, that "case series" may have been used since 1998 by the anti-vaxers as proof that vaccines are to blame, but since  Stagliano has always been of the belief that it was thimerosal in vaccines that caused the autism in her two oldest and Stagliano's personal toxic mercury overload inherited by the third unvaccinated daughter, it's no big deal to support Wakefield's helping the GI problems while backing away from the idea that it was ever an MMR-vaccine link. Easy for her, anyway. Not so easy for her buds who still think its the MMR, still call Wakefield's "case series" a study that linked the MMR with autism. Ah well, maybe they don't discuss that stuff when they get together, since they all pretty much hate vaccines equally. Stagliano especially loves to go on and on about Gardisil over at AoA, even though they've never implicated that vaccine in autism. But, sure, AoA is the daily autism epidemic newspaper. Sure it is.

Today, things remain busy for the Wakefield cult. Olmsted has a piece up on AoA that has absolutely no substance to it at all, just a lot of hot air and the opportunity for the folks over there to bitch about how the global governmental-industrial conspiracy has skewered a saint, an innocent man, a great man, a man who just  wants to help, dammit!

Wandering the comments section of Age of Autism is often a surreal experience that is not for the faint of heart.

"AoA is the most reliable source of autism news on the internet!"

The AoAers are up in arms, trying to back away from the whole study thing, and yet from Jan 28th on their site:

"Was the 1998 Lancet article based on a research study or a case study?

The Lancet article was based on a case study. Case studies do not have control groups."

And here they refer to this as a link between GI issues and autism:
"The verdict comes less than a month after an article in the journal Pediatrics1 urged further study of a link between gastrointestinal disturbances and autism originally pointed out by Dr. Wakefield in 1998."

What about this concerning Wakefield and studies?

"The GMC will no doubt be helped by a press that barely understands the debate and has never read any of the dozens of studies published by Dr. Wakefield in many different respected medical journals."

Not enough?

"Dr. Wakefield’s article suggested a possible but yet unproven connection between bowel disease and the MMR vaccine. His article focused on a case study of 12 children with neuropsychiatric disorders and bowel disease. At a press conference highlighting the release of his article, Dr. Wakefield suggested breaking up the Measles, Mumps and Rubella (MMR) vaccine into three separate injections for safety reasons."

More, perhaps?

"Also like Galileo, Wakefield didn’t originate the idea that vaccines might play a role in autism, but has become the most prominent developer of the idea."

Yeah, they can slip-slide on this and try to draw emphasis away from the MMR/autism thing and argue that his focus is on GI issues in kids with autism and healing them, but everything quoted so far is from this YEAR.

"Dr Andrew Wakefield, the gastroenterologist who in 1998 raised the possibility of a link between autism, bowel disease and the MMR jab, will learn whether he has been found guilty of ethical breaches in research methods."  --Sally Beck

John Stone:

"1) The persistence of measles of virus in the gut (the most controversial part of Wakefield’s hypothesis) is an established reality


2) The epidemiological evidence base for the safety of MMR vaccine (and particularly in relation to autism) is non-existent

3) Autism incidence has spun out of control despite denials"

Anne Dachel's pretty damn sure it was a study:

"It makes no sense for Lauer to imply that if it weren’t for Wakefield ’s study, we wouldn’t be having his debate. Wakefield did the study because the question was being raised."
How about some more?

"Lead author Dr. Andrew Wakefield reported on 12 children who had developed autism and bowel disease following MMR vaccination."

Eventually, I have the feeling I'm going to get tired of providing examples before I run out of them:

"Clearly in writing up the paper, especially because the cases were self-referred, the authors had to mention the fact that a number of parents had told Dr Wakefield that the onset of first gastrointestinal problems that were followed by ASD like developments had coincided with their child having received the MMR vaccination "

Wakefield, in his nazi-linking post at AoA, hems and haws and is careful to say that his case series just reported what parents said. It's the parents' fault on the linking of the two. Never mind that he argued he found the measles virus in their intestines. Wakefield writes:

"That vaccines may do so is acknowledged (by, among others, autism expert Professor Sir Michael Rutter ) and is not actually the debate at hand; the real questions are, which children and how many? The base of the tsunami that is the autism epidemic – one sustained hitherto, by competing arguments for the rising number of diagnoses and those invested in non-environmental causes – is no longer able to support its top."
 
Walker writes:
 
"After work over the next decade, Dr Wakefield came increasingly to the latter conclusion, and was convinced that it was the vaccine measles strain, in combination with the strains of mumps and rubella, that was responsible for the gastrointestinal condition and, in this relatively small subset of children, also for the regressive autism from which many of them suffered."

I have not provided examples of all the posts involving Wakefield and the idea that the MMR is to blame for autism, and I'm only back to May 2009.

Age of Autism has been squarely behind the idea and promulgated the idea that Wakefield linked the MMR to autism. They cannot rewrite their own history to anyone but themselves. And it's doubtful that all of their followers will accept a rewrite of something in which their identities as autism warriors of vaccine-damaged children is put at risk. That's okay, though, because we should keep in mind that Wakefield has made the leap to the Hep-B vaccine as complicit in autism causation.