7/31/2009

Our Children's Stories: How to tell the bright spots when nasty people attack

This past week was an interesting and challenging week. It was a week where some "people" decided to see how nasty they could be. And how one individual could take a piece from here and twist it and mock it. This person had a blog of her own under another screen name that she took down this week once it became apparent that my friends and I knew who she was, had been kind and empathetic to her, and yet she'd been a bully.

I was left with the struggle of how do I write about my children when there is that kind of nastiness out there? Especially considering that this nastiness is being done by OTHER parents of children with autism. Not strangers with no commonalities, but parents whose children have the same neurological condition, face many of the same issues. These parents attack other parents with lies, distortions, and sometimes just complete assiness. What the frak is wrong with them? It's one thing to disagree and debate the person's argument, to debate the words, to point out where one disagrees. It's completely different to call names, distort, and lie. That's just being nasty to be nasty.

What to do? Cave into the bullies and go silent? Not a frakking chance of it! I will not be intimidated. I will not be silenced. I'll be damned if these people will keep me from telling the stories about my beautiful children, both their triumphs and their struggles. These people should be ashamed and they will be the ones who face their someday grown children's wondering looks as their words come back to haunt them, as their children see the nastiness, the negativity, how these people treated adults on the spectrum.

My two oldest children watched all of the nastiness unfold this week and tried to figure out how parents could do this to other parents. My children are taught to stand up against bullies. What I do, how I handle this adversity matters beyond the wider scheme of things. It matters to my children. They watch me, they see the names (although only the oldest knows the nastiest), and they see me choose my words, they listen to me as I tell them why I choose to keep writing.

Yes, I could make Detritus private as Powered suggested, or I could do what she did and wipe the blog. Interesting choice for a bully to make. I will not, though. I'll keep writing. I'll keep working for my children.

My friends, allies, partners, and I, we will continue to fight. And when we question it, the wisdom of continuing, we can look to one of our friends, who has had a blog for a great deal longer, who has faced this nastiness for years and yet keeps going, keeps speaking. When it beats us down, we'll share with each other and agree it's hard and it would be easier to just go quiet. And we'll take breaks from the nastiness and then hopefully, because we'll always have each other, we'll stand back up and wade back in. We'll tell our funny, poignant, meaningful stories about our children and we'll fight the nastiness that would silence not only our voices, but the voices of those autistic adults who fight beside us because one day those adults will be our children.

And I will admit to feeling a great deal of personal satisfaction of metaphorically giving the finger to those who tried to silence and intimidate us. Yes, I do believe I will.

7/30/2009

So says Huffington Post and a meander around to whale.to and AoA (Updated 0731)



"This article is
STRICTLY MODERATED
+ moderation explained
All comments on this article are pre-moderated. This means that every comment submitted will be reviewed by a moderator before it is posted to the site. Unfortunately, depending on the volume of comments, it may take time."
I was over at Huff yesterday looking at Amanda Copeland's new post, thanks to Alexander's (A View from the Boundaries) post on it. And I noticed this new triangle and warning before you comment.
Apparently, in the break I've taken from Huff because I was tired of excessive moderation and the continued regurgitation of paranoia and histrionics that the two remaining nemeses keep putting in, Huff put up a new sign and warning: hey, don't bother, we're afraid of people getting their feelings hurt or some such nonsense. If the moderators on Huffington were actually doing their job and following the guidelines rather than being arbitrary about it, well, that would be "okay": you'd get sanitized commentary on an article; it sounds so boring, but it would be evenhanded and done by the guidelines. I'm not sure what is going on at Huffington, but it isn't particularly impressive when it comes to arbitrary censorship based on how lazy the moderator is or whether the moderator philosophically opposed your position. If you want interesting, fly by commenting, you have to stick to the news articles. There it is still fast ball and interesting. It's not usually substantive in discourse, but you can post and it gets on.
Contrary to someone's argument that the woo fighters have disappeared because there is some new study proving thimerosal causes autism (dude hasn't provided the information and wouldn't that have made the news?), we are actually busy doing the things he himself argued people should be doing: many of us are busy trying to build up a facebook group and a forum for parents to gather, get information, and be supportive. It's far more satisfying and potentially more effective than repeatedly showing someone who goes to whale.to for his/her information that they just might not be on the right track regarding the information they're getting.
At this point, though, I figure the minute I see someone use whale.to, I know everything I need to know. It's one of the reasons the editors and regular contributors at Age of Autism have no credibility with me. They write over there, too.
Update. 07/31
Now the Amanda Copeland article is Fully Moderated and it has a flag symbol. Lovely. Sort of like this one quote from Amanda that had me cracking up: "While vaccines, directly given, did not damage my daughter, vaccines have triggered autism in about 90% of the worldwide autism population. http://www.generationrescue.org/evidence-science/05a-autism-and-vaccines.htmhttp://www.rollingstone.com/politics/story/7395411/deadly_immunity"
Unbelievable, really. The whole thing. This woman had her daughter injected with IVIG 18 separate times. Despite no evidence that this was a safe or effective thing to do.
Audrius V. PlioplysIntravenous Immunoglobulin Treatment of Children With AutismJ Child Neurol, February 1998; 13: 79 - 82.
"Given a positive response rate of only 10% in this study, along with the high economic costs of the immunologic evaluations and the intravenous immunoglobulin treatments, the use of intravenous immunoglobulin to treat autistic children should be undertaken only with great caution, and only under formal research protocols."
Did that happen? No.
I get desperation, I get wanting to help your child in anyway possible. But gambling in the way so many of the loyalist AoAers appear to do or want to do blows me away. It's like the folks who want the magic weight loss pill rather than being willing to do the hard work and time investment.
And they are proud of it, proud of their rejection of evidence-based medicine, their rejection of the scientific method. They wear their rejection as a badge of distinction. It's certainly distinct. I suspect that this rejection is not simply confined to their children's medical care, but systemic and global. I further suspect, based on way too much time spent on Huff in a dialogue with several poster children for the "movement" that there is no reasoning with them at all.
So, to add to my list of sites one has to mention for me to know all I needed: Generation Rescue and Rolling Stones. Boy, if you get your autism info from these two entities, well, you might be a ....

7/29/2009

Autism Nostrum: Gastrointernonsense

Autism Nostrum: Gastrointernonsense

I had intended to get to these two studies, but Nostrum beat me to the punch and did such a great job, I don't see how I can top it. Ya'll make sure to give it a read. :-)

Reflecting on neurons, cures, and the imprecision of language

We are our neurons. I’ve said it several times in several places since I began to look at blogs, Huffington Post, and Age of Autism back in March.

Hard to believe that before March of this year I didn’t know about all the blogs or Age of Autism, I know. I knew of some websites and forums because I had done a paper on the culture of autism in 08, but I really didn’t know about much of the internet stuff available out there, nor the huge rift between the parents of children with autism along the lines of vaccines/not vaccines and neurodiversity/antiND, and I am sure there are more, but I haven’t been on any forums that are out there, except WrongPlanet, so I’ve missed a lot of what goes on for actual discussion boards. I think I’ll count myself lucky on that front and stay away from those.

I have argued that we were our neurons and that saying autism was evil was tantamount to saying our children were (based on another’s comments one of the first times I ever commented on a blog), although it became apparent after a few exchanges that we were having some miscommunication problems since English was his second language.

So, yes, I did write that schizophrenia couldn’t be separated from the person (I never wrote it shouldn’t be cured). I wrote on April 10th (and I put on my pissy hat and threw around my teaching psychology --since I was two weeks post hysterectomy, bored, and in pain, I'm not going to be sorry for that bit of pomposity): “ You can't separate autism from the child, or schizophrenia or bipolar from the person. They are neurological disorders and we are our neurons. You called those things evil; I, from my vantage point as a college instructor of psychology, stated that this was tantamount to calling our children evil.” The individual had written these things were evil. We figured out his idea of evil and mine differed tremendously because of the language barrier; we agreed to disagree on some stuff and we parted ways amicably.

On Best’s blog yesterday, someone brought up the schizophrenia/autism/same thing/cure/I’m deranged argument, and I argued that schizophrenia is not the same thing as autism and that I’d cure it in a heartbeat. And I would. Of course, I’ve said I wouldn’t cure autism and people mistake what I mean by that even when I explain what I mean, because cure in different cases to me has different meanings.

And semantically I contradicted my post of April 10th and argued that schizophrenia was not a systemic difference in wiring and that it would be easier/theoretically possible to cure. Of course, that is imprecise. Easier to treat, bring the symptoms under control, but permanently cure, probably not.

So you’ve got a contradiction. Me saying schizophrenia couldn’t be separated from the person and me saying recently it could in that it was not like autism. That pissed people off because autism used to be called childhood onset schizophrenia. They’re not the same and they don’t look the same. Of course, you’ve got people out there thinking that autism and mercury poisoning are identical, so there’s no accounting.

So, which is it; what do I really think? Well, it depends on how I feel about my brother that particular day, I guess. And whether I’m keeping in mind some of the research on schizotypal personalities and the theory that schizophrenia is schizotypal to excess, a problem with neurotransmitters causing the condition. And whether I’m popping off a quick answer to someone who’s irritated me.

My brother’s been a pain in the ass in the past, notsomuch now since his medication eliminates the behaviors and thoughts that made living with him difficult. Neurological disorders can be a pain in the ass for the family members without being a pain or a problem for the individual, even if you personally think it’s destroying his/her life. He doesn’t seem unhappy, and on his meds, he isn’t such a pain in the ass. So: pain in the ass to me; let’s cure it. Not so much a pain in the ass to me and he’s not clamoring for a cure; not so much a drive to look for a cure, but effective treatments. It isn’t perfect and it isn’t consistent across domains, but it is real. As my father says, if it ain’t eating no hay….

Does that make sense? The drive for a “cure” means different things to different people at different times. I often conceive of cure when it is used in relation to autism as the same thing a cure for Down Syndrome has meant: a genetic test while in utero allowing 90% of all identified Down fetuses to be aborted. I’m not for that. Others mean cure by reducing a child to an NT stereotype; wipe all of what autism means out, the good with the bad.

Now, I think this depends on how one conceives of autism.

If you think everything going on with your child that you find difficult and irritating to deal with as the autism, then it means you are creating a distinction between the good parts and saying that’s the child, and the parts you don’t like and saying that’s the autism. And a parent can do this and not have any particular point of view on causation. I think there may be some existential beliefs behind this one. Who wouldn’t, though, agree, that yes, if you could lift the burdens your children bear from their shoulders, you’d all do it. So, in this sense, if you could take the parts of the child that you term autism as being the maladaptive behaviors and remove those maladaptive behaviors from the child, who wouldn’t?

If you conceive of everything that is medically wrong with your child as being the autism and the child has accompanying medical conditions besides autism, I can understand parents desire just to wipe it all out: autism is a scourge to them that has taken their child away from them and is causing the child all sorts of ailments. If you add on top of that the idea that the government, the medical community, and industry intentionally caused this to your child, thereby robbing you of your child the way the child was supposed to be, I think anyone could understand the anger, rage, bitterness, all while thinking that, hey, not the best way to move forward in life. Who wouldn’t be for eliminating, reducing, removing those medical conditions? We can deal with the conspiracy theory stuff separately.

Autism, for some parents, is a horrible thing to deal with. It is their worst nightmare. Well, it is. They should be able to say, here's my story; I just think that some parents go WAY too far in their pity parties and do so at the expense of their child, and then it turns out it these parents aren't even dealing with the most impaired on the spectrum. Some children are profoundly impaired, have accompanying intellectual disabilities, epilepsy, intestinal issues, food allergies and are on the extreme end of the spectrum. These parents are forced with hard decisions to make as their child is so profoundly impacted that they require around the clock care and will always need such care. They deserve empathy, compassion and people getting off their asses to offer real assistance. If they start to use the language that some AoA parents have used regarding their children being “dead” and cancer being better (which should be beyond offensive when the parent then goes on to say the child is “recovered”), then there ought to be a “Gosh, I think you might need a safe outlet and a trained therapist to work this out with because that isn’t right and it sure isn’t healthy” along with the compassion. I get that everyone handles adversity differently and have read people defend some of these folks by saying they are entitled to their feelings. You know what, I disagree with that. It's like to saying to a child abuser, well, you're feelings were valid. Bullshit. Some feelings aren't valid. Aren't acceptable. Ever. And most people would agree with that assessment. We'd just draw the line in different places.

This extreme end of autism isn’t the case for the majority of autism parents, although autism is never easy or it wouldn’t need the diagnosis, would it? But it doesn’t have to be a tragedy or the end of the world. Even when you are faced as a child reaches adulthood with the realization that all the effort that you still haven’t created enough functional life skills for the now grown child to live independently or even assisted, it doesn’t have to be a tragedy. It doesn’t. You work at creating the best life possible for the now adult child of yours.

I’ve stated that I would cure my son in a heartbeat of the cognitive impairment that holds him back. If I could lift that damage out from the stroke (and same for my brother who also had a stroke), I would.

Folks can take that and run with the idea I would do nothing to help my children with their ASDs despite my having written in detail what I believe in and how hard I work with them.

I am lucky; my daughters are so much easier to deal with than their brother was. They have no accompanying cognitive impairment and the little one has progressed so far with traditional therapies and hard work on social skills and appropriate behavior. My son is happy with his life; he toodles off to a center for the disabled each day and comes home at the end of the day having had a life of his own with other individuals with similar difficulties. He’s relatively well protected and so has not suffered the bullying and abuse that many of the children who attend public schools face. I think it’s likely he is as happy as he is because he was spared that gauntlet, a gauntlet of nastiness that is alive and well and dished out by so many autism parents.

I can’t help but think, wow, sometimes, people, it doesn’t have anything to do with autism. Some people are flat out bullies and having autism somewhere in their lives gives them a convenient excuse to let it all hang out, especially when they are protected behind a screen name and relative anonymity.

This brings me back to the idea of a cure. If one could separate out all those things that people “hate” about autism and leave who the person was, the good things, the things about one’s child that one loves, how is this any different from picking traits about a NT person and saying I’d wipe that out about you? I mean, I’d like my husband to rinse the sink out after shaving and pick up his dirty laundry. Can we find a cure for absentmindedness and not caring about the same level of cleanliness?

I think despite people’s best intentions, language remains imprecise because it is a personal construction. Each person brings connotation to the words we use, as well as their built-in biases. If you’ve already decided you hate me and everything I stand for before you’ve even read me, based on hearsay, there isn’t anything I can do about that except to keep explaining who I am and what I stand for, as well as what I stand against.


As a parting thought on autism and maladaptive behaviors: which behaviors do you want to eliminate in your child? Because isn’t that a more workable way to handle it than this cure/not cure mentality? This particular behavior isn’t working, so let’s work on providing a more adaptive behavior to put in its place. At the same time, let’s work on figuring out what was prompting the behavior. All behaviors are engaged in because at some level they are fulfilling a need. Figure out the need and substitute a more suitable behavior to fulfill the need.

Those last two sentences apply nicely to bullying, too, don’t you think?



For a book that deals with the struggles of what a cure would hypothetically mean and an interesting read, I recommend Elizabeth Moon’s The Speed of Dark. Whether individuals feel Moon adequately and accurately conveyed autism or not is not what I find relevant, but the struggle behind the book at a mother’s feelings about autism, cures, and what it means to be a person are. The work also raises societal questions as well relating how society treats the disabled, and how they would potentially treat people who are happy with who they are if there were a cure to “fix” them.


http://en.wikipedia.org/wiki/The_Speed_of_Dark

7/28/2009

A Reminder of Who We Are and What We Are About

Countering and Raising Autism's mission statement:


Join us if you are ready to band together and stand against:

the anger,
the bitterness,
the woo that charlatans try to sell desperate parents,
the idea that vaccines, heavy metal toxicity, lyme disease, herpes, SV-40 and whatever the next nonsense is are the cause of autism.

Join us if you are ready to:

follow the science, wherever the science leads,
accept that autism is a life long developmental disorder and that while not all children will achieve independence, many will make drastic improvements as they age,
support other parents kindly and compassionately,
be tolerant of where others are on their journey of acceptance,
be critical evaluators of both the science and the claims made by those pursuing pseudoscience,
love your children unconditionally while working to improve their social skills, functional life skills, and academic skills.

This new group, Countering AoA: Following the Science/Raising Autism, is a group ready to make a difference.

If you are looking for honest, often blunt, answers and have a truly open mind, then all the above conditions really aren't necessary. You, too, are welcome, if you are truly interested in stepping away from the anger, the bitterness, and the woo.

No comment moderation, no censoring, and no hiding. But also no harassing. Be nice. Breathe and imagine that someone else was saying that to you.

See the links to the right side.

Fun for all and new names to add to my growing list

So, I absolutely need to start a list over on the right of all the names I have been called. Best's blog has singlehandedly netted me the most names yet.

I have to hand it to Best and his minions, to borrow a phrase, they are a hoot and a half. Where to start?

Let's start with JoAnn: "And John posts all sane comments regardless of whether or not he agrees with them, unlike Neurodiversity. And he even sometimes allows insane comments through: that's just how nice he is."

How precisely would you know he posts everything unless you were him?

Let's follow with #7: "Wobbles: You diagree with everyone on this thread. Even if you think you know what's best for our children, I honestly can't understand why you're devoting a significant amount of your time to arguing on here? I've read over this thread and you appear to be quite the bitch, don't you?Why don't you just chill out, get off here and do something nice with your kids?"

First off, I never said I knew what was best for your kids; Best does: chelation. Note we're back to messing with my name and now we've called me a bitch. Okay, so I'm being personally attacked on a thread, but I should ignore it and not respond. Makes complete sense. Almost as much as #7 thinking he knows that all the other anonymouses are actually different people: "I'm your 7th suspected sock puppet and this is the first comment i've made on this thread. I've been commenting on here for years, and I am not John Best."

Throw in a few more: I'm unbalanced, pompous, blah blah, attack attack, crap and God help my students disagree with me. Listen, I don't have a problem if students disagree with me. I could give a shit if you people disagree with me; the problem started with Best and continued with Powered. And the little echo chamber in there of anonymouses with no courage, Best, and Powered continue the game of attacking me. So, don't be stupid enough to think that I find that intimidating enough that I'm going to shut up because someone had the balls to call me a bitch. Ouch. That's so much worse than fat slob and fatty. Really. It wounds me. Cuts me to the quick. I think I'll fall over in a dead faint at the insult of it.


I love these two:
Anonymous said...
"
This woman is an adjunct instructor? Where? God help the students if they disagree with her. She comes across as a VERY unbalanced, angry individual."

Tell you what, I'll ask them tomorrow. Some of my students read my blogs, so I'll ask. Heck, I say readers should vote below in the comments section: Yes, I am a bitch. No, I am not a bitch. Depends, bitch where necessary. Three options, folks. I may have to open a poll. I tell you if the bitch vote one, I'd be so devestated I think I just wouldn't be able to bear it.

And this one is rich, considering Best's threats (see Best's bests here):

Anonymous said...
"PBS-if she contnues to rant on and on about "it's too late dear" one more time you might want to look into a restraining order! I would suggest she stop threatening you."
Tue Jul 28, 04:27:00 PM EDT

I have told Powered I will reveal her other internet identities if she doesn't apologize. Go ahead, try to get a restraining order for that.

Powered apparently felt all reinforced and back in bully/coward mode:

"Kim, My little jab at you about what your child said was directed at YOU, not your child. I was chuckling about the way you handled it. How have I insulted your child? Seriously. As far as you wanting to "out" me? Go ahead. What will it prove?And why on earth would I want to be your friend after all this? Seriously. And actually, no, I am not the other anons on this particular thread, believe it or not."

Really? Your little jab, if it had been directed at me, would have been directed TO me on my blog. And I never said you insulted my child. You involved my child and twisted the post to make it appear I was not in favor of intervention. I'll take this as a no to the apology then? Not going to be holding hands and singing kumbaya?

Note: this has been edited and final paragraph deleted pending further dialogue with Powered.


Now I am a crazed squirrel

"I would tend to believe that if someone was happy and content with their own life they wouldn't have to create an entire blog focusing solely on another blog and would not spend their entire day furiously going through comment after comment like some crazed squirrel. WOW! We have another winner from the ND movement."

https://www.blogger.com/comment.g?blogID=20954432&postID=4757114666459980901&page=1


Anon, awww, it doesn't take my entire day. It took a couple hours. :-) And I am plenty happy with my personal life.

I like the crazed squirrel imagery. So much more original.


Powered, I'm going to go live my happy life, teach my students, and play with my daughters. It's a busy day ahead. Use your time wisely, because once the kids are in bed, it's computer time again.

7/27/2009

Knowing bullshit when you see it. And standing against it.

Just a brief post to bring you this complete bullshit:

"Neurodiversity is an excuse not to help autistic children. Period." -- Powered_by_Starbucks

https://www.blogger.com/comment.g?blogID=20954432&postID=1195986192012834305

Interesting article on the idea of neurodiversity in a special education setting: http://www.newhorizons.org/spneeds/inclusion/information/armstrong.htm

Neurodiversity doesn't mean not helping individuals with special needs, extra challenges or disabilities. It means respecting and valuing them as people. It mean not disparaging, discriminating or abusing them because they have a disability.

It means helping them attain their full potential while respecting their value as human beings and appreciating them for who they are where they are and when they are.

For Powered to co-opt the idea of neurodiversity and twist it to mean the opposite of what it stands for is for her to indicate clearly how she feels about people with disabilities. And it isn't a pretty picture.

More to follow. Should be interesting.

7/23/2009

Human Capacity and a call to action

Updated and revised as of Jul 24

Yesterday, I tried to place a comment at AoA. I think it's important to acknowledge when AoA manages to run an article that isn't hate-filled or chockful of inaccuracies. For a Crosby piece, this one did fairly well at making the case that Asperger Syndrome is a disability and people with the condition should qualify for services and do. He went on to argue against his mythical ND movement, and I argued against that in my comment, but I didn't go into great deal on Crosby's piece. Yesterdays's blog post was just a quick little thing to note that even when I try to post something generally positive and favorable towards AoA over there that they won't put it on, but let hate-spew on, which was never addressed by another commenter. My original blog post is in blue so that readers know what was up yesterday.

Crosby: AoA and another good article:

Jake,
You did a very nice job with this.
I don't think all individuals who support accommodation and acceptance of people on the spectrum who get the label of ND are of the belief that ASDs are not a disability. Just as people with ASDs are on a spectrum of differing levels of functioning, people involved in the autism community are on a spectrum when it concerns how best to serve that community. One can advocate the idea of a neurological difference while not dismissing disability. The point is to increase acceptance, minimize discrimination, and make society more receptive to all individuals, regardless of their level of functioning.


http://www.ageofautism.com/2009/07/why-asperger-syndrome-is-a-legal-disability.html#more

And Roger, proving AoA isn't about to drive traffic to me: they won't post the above, but they'll post this:

"Nuerodiverse is a psyop brought to you by our government and pharma. Anybody who falls for the neurodiverse movement is disabled because they lack judgement and reasoning ability. Honestly, people who cannot function are not some higher form of exisitng or whatever nonsense they spew. I honestly don't listen, it's like saying cancer is a kiss from God. Nuerodiverse only exists on the internet, not real life. Nobody would look at a brain damaged person (sorry Jake) and think it's a good thing. Sad that the argument has become well you're less brain damaged so it's ok. "

AoA, keep proving what you are about. You're doing a good job of proving my point made here:
http://counteringageofautism.blogspot.com/2009/07/why-not-let-it-on-when-im-going-to-put.html.

Keep spreading the hate. Even when you manage to let a good article on.


In the comments section, jypsy provides a good rebuttal to Crosby's inaccuracies regarding ND. While it appears that each "side" of the neurodiversity equation has its extremists, neurodiversity, as I believe I have written previously, is like ASDs, a spectrum.

Neurodiversity.com on its intro page has "honoring the variety of human wiring." For me, to be a supporter of neurodiversity means that I accord all people regardless of their level of impairment, their diagnosis, their issues, a respect and appreciation for their value and worth, for their rights to be treated with dignity and compassion. The failure to see others who are different as inherently equal in value to oneself, is to be anti-neurodiversity. If Crosby, Best, Mitchell, and others can redefine neurodiversity to be this mythical movement in which its followers do nothing for their children to help them achieve their potential and far worse than that, then we can redefine anti-NDs. And I will.

Best wrote on this blog this comment: "The problem with this deranged statement is that autism is unacceptable. It should never be accepted, only cured and eradicated. Actual autistic people are not simply cognitively disabled. They are cognitively blown away. They have no cognitive function that remotely resembles any human capacity."

I let this comment stand because it meets my comment guidelines, which are lenient, with a rule of 5. This, while containing no name-calling or outright personal abuse, meets my criteria for being considered comment 3 of the 5 Best will be allowed. While I will not directly address Best until there is a retraction of his hateful name calling on his blog and here and an apology for the abuse, I will address the comment itself.

First, "autism is unacceptable."

This is an imprecise statement. The suffering that autism may and does cause for individuals is unacceptable. If the suffering is caused by hate rants like the above, then the suffering is not an inherent feature of autism and lies instead with the people who utter it. The discrimination suffered by people on the spectrum is unacceptable. The lack of acceptance and basic human dignity is unacceptable.

"It should never be accepted, only cured and eradicated."

I think there is much offensive here, but let me start with the idea that autism shouldn't be accepted. What does that mean? Does it mean denial? Best has made clear that he believes all autism to be mercury poisoning. That's it, that's what autism is. I argue mercury poisoning is mercury poisoning and autism is autism, two different things entirely.

Best would have people believe that accepting autism means not working with children on the spectrum to help them achieve their full potential, that it means leaving them as they are and offering no intervention. This is his mythical ND movement.

What about "cured and eradicated"?

To Best, autism/mercury poison should be cured with chelation, and I believe, lupron, as well. Failure to provide this is child abuse to Best. Autism is not mercury poisoning and no "cure" exists, although there are certainly children who do incredibly well as they grow up and see huge improvements in functioning due to intense early intervention and continued supportive therapies. The degree of impairment varies widely and the number of comorbid conditions varies, as well. This impacts the level of improvement some will see over time. Profound intellectual disability does coexist with autism, and improvement may not be significant for some.

So what about eradication? Nasty word, nasty concept, that. What is Best suggesting with the use of this term? That where it can not be cured, it should be eradicated? How? What does he mean by this specifically?

"Actual autistic people are not simply cognitively disabled. They are cognitively blown away. They have no cognitive function that remotely resembles any human capacity."

Okay, going on the assumption based on Best's previous comments here, I believe that he is restricting actual autistic to the most seriously impaired and for which he is blaming mercury poisoning. He does not appear to ascribe to the notion of current accepted definitions of ASDs by the neurological or psychological communities, or even particularly with AoA's positions. So, if you restrict your view to Best's view that it is that small proportion of profoundly autistic and intellectually disabled individuals who are his focus, his comment still remains deeply offensive.

Human capacity? I believe this statement reflects more on Best than it does on the individuals he is referring to. My mother has approximately two decades of working as a nurse at a local assisted living center for the mentally and physically disabled; my husband worked there as direct care staff for over two years. Because the first decade of my mother's work at the ALC was while I was a child, I grew up around the profoundly disabled. Human capacity? Oh, my. That and so much more. A capacity for profound joy, for simple appreciation of human kindness. And Best would say these profoundly disabled individuals have no human capacity?

There is no doubt that there is a sizable proportion of our society who is dismissive and cruel towards those who are disabled. This says far more about them than it does the disabled. We have to stand up to these bullies. We have to say that all people are valuable. We have to teach our children to not only value others, but to stand up to such blatant hateful discrimination when they see it. Abuse occurs when the people who care for the disabled who need 24 hour care are allowed to not see these individuals as human beings who have value. Best and his fellow hatemongers foster this idea that the disabled lack human capacity. They perpetuate this abuse.

This is unacceptable and must be countered wherever and whenever it is seen.

7/22/2009

Restatement of my Position regarding Autism

Lurker and I have been having a nice exchange in one of my blog posts comment section. I'm going to rework one of my responses so that brand new readers inclined to think incorrectly about my positions can have a simple position statement. I thought I'd been fairly clear, but hey, I can add to it for those who have questions.

So, to my previous post, http://counteringageofautism.blogspot.com/2009/07/and-yet-again-i-am-twisted-thank-you.html, readers can add the following:

I believe in OT, PT, speech, sensory integration therapy, play therapy, ABA/cognitive behavioral therapy and other evidence based therapies, although my children have not used all of them. (Or at least, that if done correctly, they may be helpful while having no chance of harm to the child.)

I support parents who choose to use medications to treat symptoms (having been there and done that; it at least has decades of clinical evidence behind it as well as some double-blind studies-- I would not choose it at this time with my children and their particular behaviors), vitamin suppliments (but not megadoses), and specialized diets for children with additional food allergies.

Since I do not believe that autism is heavy metal toxicity, I do not condone chelation. I do not condone lupron. I do not condone HBOT.

Reaching out to adults on the spectrum, to other parents, whatever their beliefs on the cause of autism is the right thing to do. Calling folks on their BS is also the right thing to do. Ideally it can be done tactfully and some consensus or at least an agreement to disagree can be reached. And we can all still gather and sing kumbaya.

Not wanting a cure, at least not in the way you (Lurker) appears to mean, since it appears obvious where your beliefs lie, doesn't mean I don't want my children and other children with autism to receive every effort to help them achieve independence and satisfying, fulfulling lives.

It means that I acknowledge that autism is a neurological condition, not vaccine injury, that is primarily genetic and set by birth (and in many cases caused by in utero trauma) and that the effects of autism in and on the brain are systemic.

So, no, I won't trade a cure for who my children are. We are our neural network. I'll bust my ass to give them the tools they need to do well in this world while working to make this world a safer, softer place for them.

I don't particularly care if that means I get lumped into some fictional movement that exists only in the minds of some truly angry and emotionally disturbed individuals.

I've said what I stand for, and I've been consistent, minus the one typo in a comment where I said I wasn't for therapy (obvious to anyone who read the comment that it was a typo).

That doesn't mean I have the same ideological stance as everyone I talk to and choose to publicly admit to reading and following. After all, I apparently spend a great deal of time reading AoA.

And this particular blog would never have existed if they would have engaged in dialogue. They choose to moderate heavily, in essence, censoring.

Anyone is welcome here at this blog and posts without moderation.

So you tell me who's more inclusive? Who's willing to engage in discourse?


And to respond to Lurker's comment about equality -- "I mean equality in how much mental capability to learn and in amount of ability." -- I'm sorry, but that doesn't exist in neurotypicals. We are all different, born with varying degrees of ability. That kind of equality isn't possible, nor should you want everyone to be evenly matched as you seem to be defining equality. Read "Harrison Bergeron" at http://instruct.westvalley.edu/lafave/hb.html and tell me you'd be for that.

A reply to Roger Kulp

I’m always interested to see comments on my blogs; sometimes unpleasantly surprised, but for the most part I’ve been very fortunate to not encounter nastiness here. That changed this week, but as I’ve blogged about, it tends not to weigh too heavily on my shoulders. I have a quote posted on the back of my front door that my family and I read each day on our way out into what is far too often a mean world: “What the world thinks of you is none of your business,” to which I added, “What do you think of you?”

I hope it eases things for my kids, puts things into perspective, grounds them, and it certainly never hurts me walking into a classroom of often indifferent students to keep that in mind, nor my husband when he walks into the jail each day to do his job as a deputy and corrections officer.

I’ve blogged about Jake Crosby’s backhanded way of bitching about Roger Kulp, then posting something a bit different on AoA a few days later (http://counteringageofautism.blogspot.com/2009/07/interesting-article-by-crosby-at-aoa.html). I read Kulp’s piece at AoA when it came out, and I’ve read some of his comments across the blogosphere. So I was surprised when I saw his comment on my blog, although not particularly the tone, since apparently Kulp would like to align himself with some of the more hostile folks who are all about “cures.”

It would be nice if folks actually read my actual words before deciding they knew who I was and what I stood for. But at this point, I understand that they’re not particularly interested in arguing against what I’ve actually written. It’s far easier to set up a strawman and knock it down.

So, once again, in what is all likelihood a futile attempt at actual dialogue, I will go through Kulp’s post and rebut it.

Roger Kulp said...
“You must be pretty happy,what with Hating Autism, and AOA,driving so much traffic over to your rinky-dink little blog here.It's nice to know,that even though I share pretty much the same condition as a lot of these vaccine damaged kids,the fact that I am a couple of decades older,and my autism was triggered by an infection ,that I can document, seems to give me a little more credibility.”

I fail to see how AoA has driven any traffic to my site since they will not post my responses for the most part. Unless they’ve got a secret society and email each other the best bits of nastiness, I’m going to assume AoA’s personally given me no traffic. Hating Autism, has, however. So, I guess you’d have me thank John for engaging in nasty personal attacks, distortions and outright lies since he’s brought me readers?

Rinky-dink little blog. Okay, cool. You, too, can have a rinky dink blog, Roger. Go for it.
Credibility for what? And to whom? Because I’m going to give people who come to my blog to be hostile and aggressive about zero credibility on anything.

“Clearly you have no idea what it is like to fight one doctor after another,year after year,trying to have your medical problems taken seriously.To have one doctor after another tell you ‘We can't figure out what's going on here with (Fill in name of medical problem.),but we do know you have autism.Autism is a mental illness,so you are probably making up a phony disease to get attention.That's what people with mental illnesses do.’”

Since you don’t know me, you have no idea of my experiences with health problems nor with my difficulties with getting appropriate medical intervention. And it’s none of your business.
If you got a bum deal with a doctor, you should have kept moving on until you found the medical care you needed. It’s why you fire doctors who are incompetent. And move on. I’ve learned how to do that. You can too.

“No matter how sick you get,no matter what happens ,this is what you get from doctors.This is what is worse than cancer.”

Yup, not what these mothers were saying at all, Roger, and even the way you’re spinning it, it’s bull and offensive.

“Do you have any idea what it's like,to have a childhood diagnosis of autism,recover somewhat ,and then get an acute infection,and as an adult, and regress to a nonverbal,headbanging, wall smashing,shit smearing autistic ? It's not so much the vaccines,although with what I have learned about Merthiolate,and Pink Disease, I am not so sure,as the stress to the immune system.”

Obviously not. However, whatever your childhood or adult experiences, it doesn’t give you or anyone else the right to be a cyber bully.

“Just ask Dr.Martha Herbert or Dr.Tim Buie.You know,a couple of "anti vaxer" "DAN! quacks" who just happen to head departments at Massachusetts General Hospital.”

Ask them what? What it’s like to get the diagnosis or the mercury/autism theory? Did I call them anti-vaxer DAN! quacks? Didn’t mention them. Although I’ll be happy to dig into them and let you know what I think.

“I think Autistic Bitch from Hell has the right idea,even though that's not what she meant.http://i42.photobucket.com/albums/e310/autisticbfh/curethis.jpgA**holes are a perfect metaphor for what needs to be cured. (Yes I have read the post where she says. ‘They can't even take a crap without finding some sort of behavioral symptom in their crapping routine.’”

I have not read this person, so I have no idea what point you are trying to make.

“If you'll notice bowel disease,is one of the common features of Rett Syndrome,Mitochondrial Disease,and whatever other diseases involve autism.They almost all have bowel disease as a feature.Bowel disease,that like any other medical condition makes autism symptoms worse,in a sort of negative symbiosis.Do you have any idea what it's like to have to go to the ER as a child,and have to have your backed up bowels cleaned out like Rotor Rooter ?Do you have any idea what it's like to spend most of a day,or a week,with acute out of control diarrhea,and go to a doctor and have them say ‘Well that's just because you have autism.’”

What’s your point? You seem to be ranting at me because I’ve taken the position that parents who talk about their experience with their children and their experiences with autism in such negative, inflammatory, and offensive terms are not doing their children any favors. And that they need help.

You’ve used your entire comment as one giant strawman to make it appear I am unempathetic to your personal situation, which makes no sense.

“How many of you eloped as children ? You know wandering in a state sort of like a cross between sleepwalking and senile dementia,and coming around hours later,with no idea where you are or what you were doing.Just another part of "The Joy of Autism".”

Again, I am not autistic, and I am not getting into my personal medical history with you in some sort of odd oneupsmanship. Nor am I arguing that autism is a joy.
I’ve made my positions on autism clear. Either read them and argue them, or well, keep engaging in the strawmen if it makes you feel better.

“How many you have been arrested while eloping,as an adult?Arrested,in part,because,you were in a nonverbal state,and couldn't explain what you were doing?”

I’m not sure what word you really mean to use instead of eloping, but I get the sense of what you are trying to say. Again, not sure of your point.

“I can't wait for the day when those of us who have this "autistic like"inflammatory/immune,and metabolic syndrome get our own diagnosis,like those lucky mitochondrial people did a couple of years ago.Then we can leave you neuroinsanity types to revel in your precious autism unopposed.”

Now see, this just exposes you as a John Best Jr reader. I have commented on neurodiversity but I have not identified with either that "movement", nor what I have decided to call Best’s mythical movement.

Neurodiversity is an idea. Not a movement. See Gonzo’s excellent post on the subject. And I am fully supportive of making sure society doesn’t discriminate against adults like you, Roger, who are on the spectrum, even if you are rather unpleasant to deal with. I am fully supportive adults on the spectrum receiving all possible support, intervention, and medical care, oh, wow, again like you Roger, so that you can get the medical help you need.

As a closing argument, I would offer that you have spent the entire rant arguing to a fictional creation in your mind since it bears no resemblance to my positions. You are welcome to post here again, though, even if it has nothing to do with the topic at hand.

7/20/2009

For Pity's Sake. Are they all this bad?

"This is the reason I would say that sometimes I would rather my son have cancer than autism:
If my son had cancer then the doctors would know what to do. MY job would then be to sit by him and love him and chat with him at his bedside and while the experts do THEIR job. In autism, my job is to be the doctor, find the answers to help him, and hope maybe one day he'll chat with me. Autism moms dream of a day that they can walk into a doctor's office and the doctor knows just what to do. What a miracle that would be. We have a HUGE weight on our shoulders. Cancer is of course AWFUL, but what if your kid had cancer and the docs just threw their hands up and said, see ya!?"
So says yet another commenter who just doesn't get it. http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html

So, basically, it's all about YOU. You'd rather your kid had cancer because it would be easier on YOU. Your kid would be suffering, go through some rather gruesome treatments to cure the cancer, might die. But YOU're good with that because the doctor would be in charge. Right.

So much wrong at AoA. So much. Wrong.

And yet again I am twisted. Thank you for noticing

"Kim Wombles is a particularly twisted individual. I certainly hope she is not an assistant teacher to kids with autism. She would be just the kind of weirdo that some district would assign to a child and she would then try to brainwash the ignorant parent into thinking autism was just beautiful," so said anonymous at Best's orgy of hate.

Yes, I am particularly twisted.

Instead of getting upset when anonymous commenters, AoA attack people, or people on Huff say tacky things about me, I tend to either not care or laugh, rub my hands with glee and get busy with rebuttals. But I don't get my feelings hurt.

I can take constructive criticism, reasoned debated, being told I'm wrong and why. I'm good with that and happy to have that. Those of you who have read me for awhile know I thrive on good exchanges. It doesn't even have to be logical; I had some of my best fun with some really illogical, unhappy people at Huff. They talked to me, and I talked back. It was good because it was interesting. I was disappointed when one of them had to go too far in his offensiveness and refuse to back off of it. I'd still be talking to him now if he would have owned that.

The "people" commenting anonymously over at the latest name-calling miserable retch's blog obviously aren't interested in an exchange of ideas, but in tearing down others to make themselves feel better. That's fine. It makes it obvious that they are miserable people not worth the personal response.

It's okay to call names when names are deserved and reasons follow to explain the name-calling; I've done that and I'll do it again. And not feel a bit sorry for it. My blog is unmoderated because I feel it important to follow my convictions. Censorship of ideas is not okay. So, if you want to come on here and offer reasons as to why I deserve invective, then you are free to do so. But you own your words. Otherwise, anonymous merely allows you the temporary borrowing of someone else's balls for the occassion.


Now, in case it's not clear from my lengthy and numerous posts on autism:

I am the mother of three on the spectrum.

I consider my children to be beautiful, interesting, fascinating individuals in their own rights. I love them and consider them to be my joys. I would lay down my life for them. They do not need to be cured. I celebrate who they are. As a good parent does, I help them with skills they need to develop, but I love them regardless of their ability to make eye contact, to sit still, to go with the flow, to write, to become independent. I love them completely and unconditionally.

It has not been easy to raise these wonderfully challenging little people and I do not pretend it has. I do not minimize the challenges, nor the pain involved in knowing a child will not have the life you'd hoped for.

I think bitterness, rage, and the ugliness too often displayed by the mercury brigade are choices each individual makes every single day and every single moment of their lives.

It's their problem. The shame of it is that this spills over onto their children, their families, their communities, and innocent bystanders.

And so, I'll point it out where I see it. I'll note it for the record.

And I'll be proud that some folks in that bitterly raging ugliness don't like what I'm doing.

If they lack the courage of their convictions to engage in dialogue with me, then I'll file them appropriately.

I have met some incredible people through blogging and am enriched by the experience. And humbled to know that I am not alone, not the only one willing to stand up against woo, against hate, against discrimination and ugliness against members of the autism community.

So I might not say to parents autism is beautiful, but I'd absolutely say their child is beautiful, valuable, and loved.

Countering AoA Obradovic article

Over the weekend, a number of bloggers added their voices in solidarity against the worst of what Julie Obradovic wrote on AoA (http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html#comments).

Here is a list of folks who wrote on this.


Michele at http://www.adayinthelifemij.com/2009/07/get-over-yourself-parent-autism-is-not.html

Autism Nostrum at: http://autismnostrum.blogspot.com/2009/07/queen-for-day.html

Alexander at: http://aspieperspective.blogspot.com/2009/07/of-mothers-and-mothers.html

Louise at: http://evendumbasseshavefeelings.blogspot.com/2009/07/thelma-may-have-lost-her-glasses-but.html

Thelma at: http://evendumbasseshavefeelings.blogspot.com/2009/07/age-of-fools-wont-play-with-thelma.html; http://evendumbasseshavefeelings.blogspot.com/2009/07/what-devil-is-ages-problem-lotta-fools.html

Angela's blog: http://lovethosekids.blog.ca/2009/07/20/guess-i-hit-a-nerve-6557039/;

http://lovethosekids.blog.ca/2009/07/19/julie-responds-6547095/;
http://lovethosekids.blog.ca/2009/07/18/twyla-6541506/;
http://lovethosekids.blog.ca/2009/07/18/to-julie-obradovic-about-autism-perception-a-bump-in-the-road-6540601/


Gonzo's: http://gonzogalore.blogspot.com/2009/07/insane-parent-syndrome.html

Jeanette's: http://survivingmotherhood-mom26children.blogspot.com/2009/07/roller-coaster-ride.html

Kathleen's: http://autismherd.blogspot.com/2009/07/scared-lost-and-confoundedbut-finding.html

And of course, my posts below.

If ya'll run across any I've missed, please place them in the comments section. :-)

7/19/2009

Questions and Ponderings Over Mercury, Autism, AoA, and Hubris

Give Age of Autism some credit: they offer a lot of choices for parents to blame their child's autism on and a lot of opportunity to vent their vitriol, both about their children's situation and anyone who strays into AoA, looks around, goes Holy crap, these people are off, and then attempts to post on there. AoA must have a quota on the amount of dissent they'll allow on, just enough to give the rabid loyalists someone to feed on. This time up it was Angela's turn. She's handled herself well on her blog, since of course AoA is too cowardly to let her rebuttals on.

I've said plenty about Obradovic's latests pieces over the last month, and I almost feel like I'm ganging up on her, since I'm focusing on her again, but I keep coming back to this latest piece and how it conflicts with her previous postings.

And I keep thinking that AoA doesn't care what you think caused the autism so long as it's something that's been done to your child, whatever component you think in vaccines, whatever vaccine, lyme diseases, SV-40, no questions asked. It makes no sense. For some it's the DTaP or the previous DPT, for others it's the MMR, for still others it's mercury poisoning from the thimerosal in vaccines. Obradovic herself insists that mercury poisoning is autism; that the symptoms are identical, and parents who personally believe it was a vaccine with no thimerosal in it at all that caused their child's autism nod their heads in agreement and high five each other, yup, that's it. You go, Julie.


Obradovic writes elsewhere on AoA: "Julie Obradovic is the mom of a recovered child." (http://www.ageofautism.com/2008/09/an-autism-moms) So, I'm trying really hard to understand where she's coming from on the newest piece. Why such fierce rage at everyone who isn't her and doesn't have her lousy lot in life, to include parents whose children have cancer? (And yes, I am well aware of my tendency to perseverate on some topics). What the hell kind of medicine are you giving a "recovered" child if her autism is gone and she is well: "I think about the 86 weekends I have gotten up in the middle of the night on Friday, Saturday and Sunday just to give her medicine, and the 14 more I have to go." (http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html)

I don't get it. I don't get how on September 15, 2008, Eve was a "recovered child" but come this week, Julie's just a contributing editor. Is that because her rant would have looked beyond ridiculous if the tag line at the end was: "Julie Obradovic is the mom of a recovered child."

I also don't get several things in her letter to Offit from September. (http://www.ageofautism.com/2008/09/an-autism-moms)

1. Where are you getting your "With 1 in 20 families now being affected by Autism, and thousands of those families recovering their children as we did" information? How exactly, even with your 1 in 67 boys number, is that 1 in 20 families? And thousands recovered? Where is your evidence of that, other than testimonials and availability heuristic clouding your judgment?

2. "These people know that I am a rational, logical, courageous, highly educated, intelligent mother who pulled her own child out of the depths of Autism." See, not getting this contrasted with your latest post, nor the tooting of your own horn. I'm pretty sure if you're saying you're courageous, well, you might want to add a few other descriptors, as well. Like narcissistic. You know? Because your latest rant is a whole lot more about what YOU've suffered, what YOU feel, how autism has affected YOU and not about Eve, and about how YOU haven't been given the attention, resources, empathy, sympathy YOU deserved. Except in the September post, I guess you were putting on your game face, right?

3. "Despite the terrible odds against us, we got her. My daughter no longer qualifies as having Autism. " From September. "[E]ven though Eve is technically recovered from Autism, she is like what Jenny describes when she says, “You can recover from getting hit by a bus, but you may never be the same.” Only Eve wasn’t hit by a bus; she was hit by a Mac truck." From July. And boy are you bitter about the money and the extra work you're having to do to send her to special therapy. I don't get it. I don't get the bitter. I don't get the resentment. And I don't get the change from the glowing she's recovered to the well, not really.

4. I do see that the martyr complex goes back awhile, though. "Instead of critics thanking me for preventing one more person from being dependent on the state for the rest of her life, thus saving them thousands of tax dollars in lifetime care, I am portrayed as an irresponsible parent who just couldn’t accept that she is genetically flawed." (September post) Maybe you aren't being thanked because there is no good evidence that thimerosal causes autism and you're trying to convince parents that vaccinations are bad things that steal your child away: "She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now." (July post). I don't get if this is an inherent element of your personality, or if this threw you for such an emotional rollercoaster that you are still reeling and really need some intervention on your own behalf.

There's more I don't get about Julie, but frankly, she's taken up too much room in my brain this weekend. Too much energy.

And there's another person to take a look at on AoA, responding to Julie:

"I’ve often heard that it must be one of the hardest things imaginable, to outlive your child. But I’ve often felt that it must be a thousand times worse to have to watch your child disappear into autism. At least when your child dies, although I suppose it is something that you never really forget or recover from, at least I think it must get somewhat easier over time."

Yet another parent saying parents of dead kids have it easier than parents of children with autism. You suppose? Frak me if this doesn't top Julie for offensive.

Why not let it on? When I'm going to put it here if you don't?

AoA censors dumb things. Apparently the moderators are those kids, you know? You know the ones, the power-hungry ones who decided who was cool and who wasn't? The ones who let you know you weren't part of the group, you were the enemy.

Unless they wanted someone to beat up on, and then they'd let you hang around the fringes until the beating was over.

That's AoA in a nutshell. Bullies. Swaggering, raging, testosterone-filled (oops, sorry, lupron-dosed) bullies who have decided on their own version of reality, of what autism is and who gets to play on their playground. They've decided their "science" is the real science, that big pharma is out to get you (unless it's providing the chelators and lupron, right?), that autism is vaccine damaged heavy metal toxicity, or if you're one of their extremists, a combo of lyme disease, SV-40, and vaccine damaged mercury overload. Oh, and that vaccines aren't any good anyway and the diseases weren't that bad in the first place (Craig, I know that's not everybody and it's not you).

Seriously, bug up your ass, it's what I'll be. So, don't put my comments on, since it gives me more fodder and proves more each day just what kind of outfit you are. But note, dear readers, that your post gets on here, automatically, no moderation. You're free to engage in debate, hopefully civilized, but not necessarily. You're free here to be who you are and say what you believe. I might disagree with you, I'll certainly tell you why, but I'll still view you as a human being at the end of the day, one with feelings, and one who's taken the time to talk to me, so someone I'll care about and wish well. That's a damn sight more than you'll get at AoA. And if you don't believe me, then go look at the few posts that weren't ringing endorsements for Julie's rant. And look at how the writers are villified for not toeing the party line.

So, my response to Teresa Conrick, AoA's resident attack person:

@Teresa,
So what's Angela's agenda then? And why exactly would offering words of comfort to someone who believes differently about the etiology of autism automatically register to you as not genuine?
Are you that one dimensional? Really?

I'm not painting all posters over there with the same brush. I recognize that many readers don't share AoA's views, nor the views of their regular commenters. And there's a couple regulars, like Benedetta and Craig who I have empathy and respect for, even where and when I disagree with them. They are always welcome at Countering's Facebook group and Raising Autism. Anyone who wants to be in a supportive, accepting environment and focus on making life easier for oneself and one's family while actively seeking the best way to help one's child live a fulfilling and emotionally satisfying life, whether that ends up being an independent existence or not, is welcome.

If you're still stuck on the woo path, but want some help coping, you're welcome at our different groups.

AoA can knock back our hands stretched out to them, that's fine. They can call it fake, that's fine. We know that our offers are genuine, that our hearts ache for other's pain, and that hugs, virtual and real, can go a long way in soothing the hurt. We care because we are there, we have walked the path, we walk it now, and we know that it is not an easy journey. It does not need to be a bitter one. A jealous one. An ugly one, no matter how difficult the journey. It can still be a joyful one. Even when feces is being smeared. When meltdowns occur. When a child rages and lashes out. It can still be a journey worth the taking. When the "recovery" never happens and you have to accept that autism is around for the long haul, it can still be a joyful journey.

I've been on this path for nearly twenty years, and my boy, my bright sunny boy, will be by my side until I step off the path and into eternity. And it can be a joyful one despite the hurt, despite the setbacks, despite all of the obstacles set on our path, if we choose it to be. It is in each of our hands to make our lives have the meaning, the tone, we want it to have. Regardless of the circumstances. And it isn't a pollyanna view, it doesn't sugarcoat the hard realities we face.

So, if you're tired of AoA's anger, frustration, rage, bitterness, vitriol, I don't care why you think your child has autism if you want to focus on tomorrow and making the world a better place for our children and ourselves. You are welcome to join me on this journey. To make a joyful noise that celebrates the life we have while working to make our futures better.


Cue Kathleen on the guitar. Ladies, tambourines and drums. And a healthy, hearty round of kumbaya.

Oh yeah, humor is required. The darker, the odder, the better.

7/18/2009

When Life hands you lemons, have a meltdown and tell parents of children with cancer they are lucky

http://www.ageofautism.com/2009/07/autism-perception-a-bump-in-the-road.html

In "Autism Perception: "A Bump in the Road?", Julie Obradovic completely lets it hang out. I'll be the first to agree that people don't see many of the difficulties parents with children of autism have because a great deal of it occurs behind closed doors. And we don't tend to talk about it in great detail as it happens to friends who can't relate, and we do that for many reasons. But this post by Obradovic offers such raw, visceral, oozing pain, rage, and disappointment that it belies her contention that she is happier than she's been in years. If this is representative of her daily mental state, she needs to find someone qualified to help her through this, because this is ugly business.

I've got a busy weekend ahead of me, and plenty of points I'd like to make on this piece and the general love-fest and high-fiving that went on over at AoA on this bit but it will probably be Monday before I can do what I want on this piece, so I'm opening it up for the readers to comment, to pick pieces of Obradovic's post or the commenters to dissect, as I am sure that it didn't run 100% positive over there on the comments section.

Help me out on this one, as rereading her piece over and over in order to do it a fair shake makes my heart hurt.

I'll start with one note: really? Cancer kids? Jealous of them because they have insurance (sweetheart, 40 million plus Americans have none)? So much wrong here.


So much wrong here. It proves Connie's point. In spades.


Update

Julie responded to Angela's post at AoA with a long post I won't rehash here, except to point out this paragraph:

"This is the kind of stuff I can't stand, frankly. I don't care if YOU think Autism isn't worse than cancer or getting hit by a Mac truck. For ME, it was. And I'm allowed to feel that way, and it doesn't make me a bad mom, or an ungrateful mom, or anything else. It makes me human."


But, Julie, it doesn't say much good about your character. So, if it's not representative of it, fix it. Because it may be human, but it isn't proportional, it is incredibly insensitive to those who have lost their child to cancer, and it doesn't help convince a reader that these are feelings you keep buried, especially on the heels of this paragraph from the day before:

"She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now. I want that Eve back!"

You are making the choices, each and every day, about how you will feel about this, about how you will deal with your life, your family, your challenges. And you are teaching your daughter and others with autism how they should feel about themselves. You write, "I think about all of the people who have been able to benefit from my knowledge and our experience." And then follow on the heels of that with your rage and jealousy over people who will benefit from your knowledge? And folks on AoA applaud you. I'm guessing you don't keep this vitriol nearly as well bottled as you think you do.

I don't particularly care if you consider me one of "the stupid people in this world who have nothing better to do than bother parents trying to help their children and wonder what the hell their problem is and for crying out loud just go the hell away and mind your own business." You put it out there on the internet to be read. You deal with fallout of your words.

What on God's green earth have you been giving your child three nights a week for the last 86 weekends that you have to do for another 14? And don't cry to leave you the hell alone about it when you put it out there.


@Twyla,
And my son who had a stroke, potentially as a result of the combination of medications he was on and an underlying blood clotting disorder, isn't going to be the person he would have otherwise been. So, in addition to having autism, he has additional cognitive impairment from the stroke. But I'm not calling him dead.
Nor am I saying it's worse than cancer. Maybe Julie's all happiness and light and this post misrepresents her, but based on her response to Angela, it's clear she doesn't feel it does. And, yes, it may be human, but it doesn't make it particularly sensitive to folks who've dealt with cancer or lost a child.
No high horses are necessary here, @Thanks Julia. You appear to be doing just fine on your own.

Update 2.0 12:28 am July 19


When you want a truly nasty post, you can always count on Teresa Conrick to take it up to a 10. If Teresa doesn't like what you have to say, you can count on her to research up on you and then attempt to demolish you, safe in the comforting knowledge that AoA won't let your rebuttals on.

Here she attacks Angela (Sirenity) who wrote a nice letter offering comfort, well, that no one there seemed to see it as such, since Angela pointed out that cancer was worse than autism and Julie was rather, ahem, negative. Any deviation from the standard vaccines caused autism routine and you are immediately the enemy.

"What a bunch of bullshit you posted. Here is your real motivation, not for Julie, Eve, or my daughter. Go off and spout your fake "caring" elsewhere"

And then implies it's somehow because Angela has several arenas to post at while making available evidence that vaccines are not responsible for autism.

You know, AoA, you're really shining as a bastion of reason, rationality, and calm tranquility. Oh wait, my bad, you're not. You're excelling at vitriol, though. At victimizing and marginalizing your children. At making martyrs of yourselves. At making it abundantly clear that your agenda is NOT to help parents cope adaptively, to appreciate their children for who they are where they are, to promote the view of autism as a horrible disease process in which the children are seriously sick from heavy metal toxicity and if you only do god knows what three times a week for 100 weekends. What the hell?

Autism is NOT heavy metal toxicity. Heavy metal toxicity is heavy metal toxicity.

Okay, AoA explain why my reasonable posts don't get on, but Teresa's hatemongering does.

7/15/2009

Objective reality and Confirmation bias

Confirmation bias may work on both sides of the vaccine/autism "controversy", but sometimes, as you wade through the posts at AoA, you come across one that, to be charitable, leaves one laughing at the complete and thorough absurdity of it. Leave aside Kent's nastiness yesterday with the pigs bit, but he always signs off his posts so nicely. All the best, my plump arse. The comments by most of the AoA loyalists are typically hostile and arrogant. Kim S herself was in her element, showing that if you don't toe her line you're the enemy. Even Craig, whom I have a great deal of respect for, couldn't help getting aggressive. Craig, I'd remind you of group polarization and recommend you spend sometime over at the Countering Facebook group or Raising Autism; we'll offer support without demolishing other people who disagree with our perspective.

One of the crasser pieces was this (and there were so many, but there's only so much I'll wade through in a day and I've hit my quota):

"Your personal bias seems to be putting the words "bunk" and "fraudulent" here. What studies could you possibly be referring to for each of these people? Stick with methods, facts, data, and conclusions. As much as you do NOT want vaccines or aspects of the environment to be a big player in autism diagnoses, it does not give you the right to insinuate fraud in an attempt to deny and hoodwink real facts and good science.
That would be a serious error and would put a permanent question mark on your ability to be objective, rational and honest."
http://www.ageofautism.com/2009/07/wrestling-with-pigs.html#comments

This response is in objection to another poster's contention that invoking studies by the Geiers, Wakefield, and Blaxill (who's not a scientist) did not constitute evidence (these studies have been debunked in mainstream science). For this particular poster, it's fairly restrained. It's still, ahem, in my personal bias, representative of her personal bias that autism is vaccine induced mercury damage. This commenter seems to have a visceral hatred for anyone who suggests her perspective is incorrect. Hell, you don't even have to argue with her or talk about vaccines at all. Just talk about autism in general as a neurological condition. That's enough to get her foaming.

I gave AoA props for a nice piece over the weekend and for the commenters being generally supportive. Well, they got the niceness out of their system.

Don't worry, AoA, whenever I meet someone who wants to know what AoA is all about, this one thread is all I need to show them. It says absolutely everything about what ya'll are all about.

Side note: Craig, I know you have some righteous anger, and I respect that, but seriously, don't you think there are places that would be a better fit than AoA? Please, we'd like it if you and your wife would come to Raising Autism or to the Countering facebook group.

7/13/2009

Interesting article by Crosby at AoA

http://www.ageofautism.com/2009/07/who-is-truly-disabled.html#comments


Jake Crosby has an article today over at AoA titled "Autism, Asperger's: Who is Truly Disabled?" Last week, AoA ran a letter by a man with autism and multiple health problems. Apparently some of what was said by Kulp irritated Crosby, leading him to comment over at Jonathan Mitchell's blog post on the Kulp letter (http://autismgadfly.blogspot.com/2009/07/roger-kulp-published-on-age-of-autism.html):

"Aren't you offended by it? He says we are not truly disabled!!!" Crosby then followed this post with a response to Jonathan's comment back to him with the longer:

"Jonathan, I had a speech delay, too, not as severe as yours, but it was clinically significant. My pediatrician referred me to speech and language specialists. I have the original report from my hospital saying I have a speech/language delay. I wrote about it in my letter to Newsweek that both you and Mr. Kulp are aware of. Yet, I later received an Aspergers diagnosis. You were also in special ed. for around the same number of years I was. I also assumed you had Aspergers not just because of my own circumstances but because that is what the reporter said during your NPR interview. I am sorry if I have spoken incorrectly about your diagnosis, though the latter reason for my assumption was due to what I heard on NPR, making that the radio's fault, not mine. Whether or not you have been re-diagnosed with Aspergers like I was is not for me to judge, though evidently you have not. I am empathetic to Mr. Kulp for his horrific condition, but his offending a subset of people with autism on AoA is not excused by that. Nothing is. This has happened on several occasions now. AoA is so desperate for anti-ND autistics it will even go so far as to allow comments and posts from someone who puts others down. That is not excusable either. While I tend to agree with you about people like Ari Ne'eman probably not suffering from autism as badly as we have, I really feel that is missing the big picture. The real problem with Neurodiversity isn't that its governed by people who maybe higher functioning than us, let alone those who cannot speak for themselves. The problem is that it is run by minority afflicted with autism attempting to impose its views and agenda on EVERYONE with autism, kind of like how the Bolsheviks took over Russia after the Tsar abdicated. Putting down everyone with Aspergers just because the majority of autistic NDs have Aspergers is prejudiced, mentalist, and wrong."


Kulp's piece is here: http://www.ageofautism.com/2009/07/a-refrigerator-mother-adult-with-autism-speaks-out.html. Apparently, this is what gets Crosby all upset: "For far too long nondisabled (Yes I'll say it people with Aspergers are NOT truly disabled.) neurodiversity types have been the only voice of autistic adults out there."

So, Crosby vented, stewed, and wrote his new piece for AoA, which meanders a bit and instead of confronting Kulp head on with his above beef, Crosby puts out that it's all the fault of neurodiversity movement who are trying to speak for everyone (I have not seen that, but maybe I don't have an axe to grind with this -- I think adults on the spectrum who have healthy self-images and are arguing that they are valuable individuals in their own right is a good thing).

Then there's the jockeying for who is more disabled. If you are on the spectrum and you want a cure, then you are more disabled than those who are in the neurodiversity movement who want supports, accommodations, treatments, and acceptance. It's the oneupsman game. I'm more screwed up than you, so I better represent what everyone on the spectrum is and wants.

Listen, trying to argue you're more disabled isn't about adaptive coping, accepting oneself, loving oneself and working to be the best person you can be. It's about whining, getting attention, and living in misery.

Seeing yourself as disabled is a choice. You could see yourself as having challenges, having issues, having some limitations. Completely different can of worms there.

My Bobby isn't going to achieve Independence, isn't going to hold a job out there in the wider world, may not marry (but maybe!), but I'll be double-damned before I ever allow himself to identify as disabled. He is a happy young man who realizes he has a few more challenges than many, but also knows that there are others with greater challenges. He focuses on what he can do, how he can help others at the day center he attends, and on being the best him he can be.

Attitude means everything. And changes everything, even if it changes none of the actual circumstances.

7/12/2009

Giving 'em props when they deserve it: AoA runs a nice post

http://www.ageofautism.com/2009/07/no-more-playdates-.html#more

Cecily Ruttenberg writes a lovely post about making friends with women and building community and the benefit of friendships and interaction for her son outside of the school.

It's a nice post. Her son still eats alone at school, though, and there's plenty I think could be done about that. Surely he's not the only one with autism or special needs there? Why not find a buddy that way? That way no one is eating alone. Involve a teacher or two to work actively to foster a supportive environment, one in which children are explicitly told that if they see another child sitting alone to include them. Incentivize the behavior by providing random acts of kindness awards.

Again, there is plenty to be done to make school a welcoming place for all children. It takes a sense of community and the active commitment of principal, teachers, and parents, but things can be done to make schools function better for all kids.


As for AoA, it's nice to see a piece where folks can build on a positive sense of community rather than community based on an exclusionary process (if you don't believe our woo we'll bash you typical nonsense).

It's nice to see a piece that focuses on the child and not on conspiracy nonsense or on selling one of your advertiser's products. Maybe you run more of these positive, community building pieces and less of the crazy or outright woo stuff, and we'll all be able to sit around and sing kumbaya together. And I'll be kind enough to ignore the chelation the author mentioned, especially since it sounds like she walked away from that. Sometimes we put a toe on the woo path. Sometimes we go a great deal farther. What matters is whether we discover it was woo and back off the trail or if we stay on it despite evidence to the contrary.

7/10/2009

Rubs me Wrong

"Catch a rare glimpse of life as seen and experienced by a person on the autism spectrum. "

---From a Unique Perspective: Judy Endow Shares Her Experiences as an Individual on the Spectrum Through Her Book Paper Words: Discovering and Living with My Autism --- in an email I received from the Autism Asperger Publishing Company.

First off, my beef isn't with the work itself, the author, or the publishing house. It's with this one sentence used to promote the work. Are you kidding me? Where exactly is it rare to get a glimpse of what life is like from adults on the spectrum? Have they not seen the hundreds of blogs by adults on the spectrum? And what, are they now rare and exotic creatures who are hidden away and untouchable and unreachable?

This really rubs me wrong. Not a necessary sentence at all.

Her story is valuable whether it is rare or not. And it's not rare.

aapc@asperger.net is the publishing house's email. Tell 'em you don't appreciate the wording. That sentence is unnecessary.


Here's the email itself:


"From a Unique Perspective: Judy Endow Shares Her Experiences as an Individual on the Spectrum Through Her Book Paper Words: Discovering and Living with My Autism

Paper Words: Discovering and Living with My Autism by Judy Endow, MSW
Catch a rare glimpse of life as seen and experienced by a person on the autism spectrum. In this intensely personal book, readers are swept up into a fast-paced journey of how Judy Endow noticed her differences early on, how she eventually discovered her autism, and how she embraces life autistically.
From her troubled teenage years in a state institution where her coping behaviors were interpreted as defiant and oppositional, to her years in a Christian community, where once again her behaviors were misunderstood, to a brief marriage and the birth of her three sons, Judy has emerged as a strong voice on the autism spectrum.
Beyond presenting a fascinating journey of resilience, courage, hard work, and sheer will power,
Paper Words shows visually on the printed page how Judy, a highly visual thinker, translates her thoughts into words."


And you can let me know if you think I'm nitpicking on this one in the comments. :-)