Wampum

I'm curious why whether Dawson is autistic is even an issue.

Because Dawson asserts her being autistic allows her to speak (she claims "advocate") for all individuals with autism, even against the actions of their parents or guardians. It's part and parcel of her insistence that she is an "expert" on the subject. Since she as an "autistic" finds ABA useless, even degrading, then the treatment should be denied to all children with autism.

Because I couldn't afford the $60,000 to send Ben to an ABA school, I got Catherine Maurices book for parents and teachers, based on Lovaas. It gave an outline of ABA (which I couldn't do, not even to make my son look at me) and a profoundly complete structure for teaching language through pictures, as I remember. We went through each lesson and checked it off when Ben "got" it.

I worked 2 hours a day with hundreds of black and white pictures and "showed" Ben how to talk for a year for free. He did always have language (nouns and echolalia...language, not communication, if you know what I mean. Hearing streams of video "scripts" he had somehow encoded to memory that had no relavence meant Ben was only making noise that sounded like communication ...)He did not catch up with his peers, but was able to go to regular kindergarten.

Shame on Michelle for throwing the baby out with the bathwater...but I still love her for her heart. She's damn tuff, and does have a beautiful "voice".

Rose

Rose,

Perhaps you are missing a key point in Dawson's article. She is contending that autistics, given the right circumstances (perhaps merely tolerance and the absence of attempts to make them 'normal') can and do grow up to lead happy and fulfilling lives. The attempts to re-wire their brains and to change their behavior may be more damaging to them than supporting and nurturing them in their different ways.

The analogy that she uses several times is to homosexuality. In the same way as behavorialists are using various techniques to change autistics to be normal, there are some people (particularly in some religious groups, I think) who are trying to change homosexual people to become straight. Maybe you agree with this, I don't know, but it seems to me to be quite wrong. As a hopelessly straight male, the heterosexual impulses are so deeply wired into my brain and psyche. When I am wearing my reading glasses and see someone coming down the street towards me, I stop looking as soon as I can tell that the person is male, and I continue watching if the person is female. It is hard for me to imagine that a homosexual is not just as deeply and intrinsically wired to be who they are. And maybe there are other people whose brains are wired up in some intermediate manner, so they are more susceptible to environmental influences in their gender choices and preferences, but forcing them to be just like me doesn't seem right, proper nor useful.

It is a leap of imagination for me to think the same thing about an autistic, but that is what Dawson is claiming, and I have to at least consider it. And certainly I would find it useful to have a more intrinsic model of learning myself, so that I would be able to see patterns in a lot of things in a more useful, less tedius manner.

Just because certain ways of doing things (i.e. learning and social interaction) have worked for you doesn't mean that this is the only path for everyone. Maybe you are just too close to your own problems and situation to be able to step back and ponder the bigger questions.

--

Phil

More...

Current studies seem to indicate that over 50% of who we are (personality traits, etc) are genetic, wired into our brains from birth, and that less than 10% is due to family environment, and the rest is not known. We are not as pliable as the behaviorialists would have us believe, and we revert more and more to type (genetic) as we grow older.

Behavioralist techniques are based on the false notion of the plasticity of the brain, which is in fact a very liberal and progressive notion. So maybe couching this discussion in political terms is not the best idea (at least in the terms that are used in contemporary America).

The long term success of behavioralist techniques on autistics is highly questionable in my mind.

See Thomas Pinker's book, "The Blank Slate" which discusses these matters in general.

Phil: Current studies? All of them?

Actually, Phil, heritability vs. environment is dependent upon the nature of environment. For example, if your environment kills all of you right away, heritability is a negligible factor, for example. The more different the environments of individuals, the greater a role it plays, the more similar, the less . . . etc.

MB:

Asserting (or better yet documenting) that Dawson isn't autistic would make a good final flourish on a piece that dealt with the issues she raises, point by point, substantively, and with proper documentation, but it is no place to start. As a spearhead argument it seems petty and irrelevant.

She is a charismatic writer and if you wish to combat that you need better control of your tone and tactics.

Kathryn, so what you're saying, is that the content of any argument is irrelevant, as long as it's argued eloquently? Justify genocide? Misogyny? Racism? Just so long as the author uses pretty words and glib arguments?

And Dawson's neurological status is key here, as she's the one who makes it so. She argues that she's an expert because she's autistic - so, a person who undergoes by-pass surgery qualifies them as an expert on cardiology? Someone with mental illness is automatically deemed fit to dispense anti-depressants?

Autism is a debillitating condition, a disease, not a "personality trait". Dawson would deny children with cancer chemotherapy, because, while it might save their lives, it might change them, physiologically, emotionally, behaviorally. She would refuse to allow parents of deaf children the say in whether to seek cochlear implants. She would refuse physical therapy to children paralyzed by accidents, as being non-ambulatory is just something we should accept, not attempt to cure. To do anything else is obviously discriminatory, no?

My children were not born autistic - at least not outwardly. Both developed normally, only regressing into autism when some abnormalacy was "triggered", by vaccines, heavy metals, antibiotics or some combination thereof. I would no more refuse to offer them the best treatment, in this case ABA, than I would simply pray over them if they contracted AIDS.

That is the real crime. And Dawson, by attempting to deny such treatment (and that is EXACTLY what she wants to do and makes no bones about it) is an active participant in medical negligence.

--2005--

KC: "What is wrong with you people? I'm willing to be convinced but not insulted."
KC: "...if you wish to combat that you need better control of your tone and tactics."

EBW: "Fuck off."

KC: "Right busy catching flies with vinegar, those folks at Wampum are!"

--1/1/2005--

KC: "I'm very proud of this piece. And it seems highly relevant now. I think it might help people cut each other a little more slack about their responses..."

--2001--

KC: "Bear with the first reactions, which are almost uniformly flattened in affect, and read on to find out what it was like. Lest we forget."

---

Me: "Do as I say, not as I do." Irony ensues.

MBW, I did not see your changes to the comments before posting; feel free to erase my comment above. I do not wish to escalate beyond your preference.

Thanks for taking this on, MB.

On the various personality tests (e.g., MMPI, CPI) I took growing up, I generally was shown to be "mildly" autistic (if there's such a thing by today's standards). In Ohio back in the 80s I also worked at a camp for the developmentally disabled and was slated to work, after college, at a farm run by and for autistic adults (and some older kids). I've been interested in the subject for a long time.

So the notion of "not curing" autism intrigued me, but it made me uncomfortable. Nothing rational about it. I just didn't like the tone of the NYTimes article, which seemed to condemn families trying to cope with their children's behavior. If somebody can truly function in society without any modification, if they only come across as "eccentric" or even "weird", then I guess maybe it's cool. But when you do have the people who are severely "different", I can't see how anybody could let that continue.

Two examples come to mind:

* Brian, one kid I worked with at camp really (it seems to me) needed behavioral therapy. He would scream out at all hours of the night, "yes, yes, best magazine!" I usually didn't get much sleep during the program anyway, but the week he was there I got even less. Meal time was even more interesting, as he liked to wander into the kitchen and rip open loaves of bread and other destructive stuff.

* Marcus, a teenager I worked with for a long time (he lived at the aforementioned farm, and we did a lot of work with them) was perhaps in the other situation. Incredibly bright, and not just in the savant way, outgoing, and funny. His one glitch was a tic that made him lurch at people in public. When he was focused and doing something with people he knew (e.g., thumb wrestling with me), there was no issue. He just really enjoyed making strangers uncomfortable. Thing is, I really didn't know why he was at the farm given all his other qualities.

Shit, people think I'm odd, but I've leveraged my quirks in my career as a classroom and online instructor. In some cases, it seems to make sense that non-destructive behaviors are re-channeled or something. But when the quality of life for an entire family deteriorates, I would think ABA is appropriate.

Typical media treatment of the issue: make it black and white, good and bad, instead of maybe acknowledging that there are many differences between people, and each might need a different approach.

MB,

I read Kathryn as saying that the argument will be unconvincing and ineffective. I don't think that she is passing judgement on the content of the argument.

--

Phil

Actually, Peatey, I hadn't seen KC's comments over on her own blog, so while I did delete Eric's original colorful "comment" (with his permission, I might add), your addendum really is quite telling.

Why? Well, I'm not even allowed to comment on her blog, let alone attempt to convince her of anything. Since I decide hours ago to merely write off such ignorance, she has to come here to demand we enlighten her.

Sorry, not worth it. I'm done with people who care nothing for children except those which spring from their own loins. Particularly if properly caring for other children might increase their taxes or make them feel "uncomfortable".

MB,

Please erase my most recent comment, if it is possible, because on second reading it is incomprehensible.

--

Phil

MB,

I'll try again...

Kathryn's comments seem to be directed at the form and construction of the argument, not at the pionts that you are trying to make. An argument that is all emotion and unsupported assertions is a very ineffective argument, one that is doomed to be written off and easily disregarded.

It seems that she is trying to say that someone should make a cogent, reasoned, point-by-point case to support your arguments, with evidence and supporting references. A raw outpouring of emotion is not the best argument, cathartic as it may be.

--

Phil

Phil, I agree with you.

I was merely pointing out that KC was stating the same re: irritating posts re: Tsunami, by referencing her graduate work re: 9/11 conversations. Her conclusion was that emotion is naturally tied to the subject matter and that the "party without a dog in the fight" should cut some slack and attempt to learn more.

I found it ironic because KC posted twice about that message to other bloggers between her original post on the NYTimes article and her updated post. I won't go into whether her New Year's wish post is cogent as well.

Something that occurs to me, that others have been saying in roundabout ways but still it seem to be missing/not accounting for, is that autism, like almost any other psychiatric condition/disease, etc., is a spectrum disorder.

That term is most often used in relation to schizophrenia (where I focused most of my studies in psychology/neuroscience), but is critical to autistic disorders as well. You have high-functioners and low-functioners and people everywhere in between.

Different treatments make sense for different people along the spectrum, which is I think what many above are saying. My point is that it's critical both for MB to recognize that Dawson may indeed have an autistic-spectrum disorder, such as Aspergers, and for Dawson to realize that that doesn't mean she has any idea what's good for someone elsewhere on the spectrum.

And as for ABA, it makes me uncomfortable and I don't like to see it, but it may just be necessary. It should be noted, however, that similar treatments are not very effective in schizophrenics.

Does schizophrenia present in small children?

Does schizophrenia present in small children?

I'm not an expert like Michael, but IIRC schizophrenia tends to present in teen years as hormones/brain chem start to change.

Phil, just because Kathryn and others find Michelle Dawson's arguments compelling, doesn't actually make them so. It's like arguing with an eloquent supporter of "Intelligent Design" - they have reams of "evidence" to support their claims, but it's not even worth the argument.

I've read volumes on ABA and other treatments for autism, and could easily argue my way out of this paper bag. But the reality is that MY OWN CHILDREN have benefitted massively from years of the therapy, so I really don't need to convince someone who by her own admission has no dogs in this fight.

What I find most stunning in this whole discussion is the entitlement complex some participants seem to have: "Well, I read Dawson, and her arguments are rather compelling, so now it's your turn to convince me she's wrong." No, it's you turn to actually look up some of the data she purportedly provides and do your own freaking homework. My job is to take care of my autistic kids, particularly since so many seem to have no problem with simply whisking away the most promising treatment, due to the whim of a self-proclaimed autistic.

Oh, well. Proof by assertion. It looks like I came to the wrong place for any lucid discussion.

Good by, and good luck.

[hey, don't forget to take your anonymous comment with you.]

Phil, methinks that many blog comments are not the ideal place for any lucid discussion. It's like expecting to have an in-depth dialogue on the Letter-to-the-editor section of the newspaper...

I don't go to Prof. DeLong's blog to have lucid discussion on noise-trader theory with him, and I don't expect Judge Posner to change notes with me on law and economics. Blog comments are just that, comments. RFC does not a discussion make, imho.

Phil - I'm a bit confused. KC argues by assertion, and MB is arguing from her own experience. Granted, andectodalism is not proof in the logical sense, but can't you see that there's some validity in what they've said? Do you not think there's some onus upon you to *disprove* what MB has asserted? Or is your only role to question and have a completely perfect respone sway you?

What the heck, I don't really know why I even bothered to check back here after I said good-bye.

NTodd: As far as I can tell, Kathryn has not made any arguments whatsoever, and I can't even tell if she has taken a side. The closest that she comes to taking a side that I have noticed is to note the (somewhat unusual, IHMO) study/question on provider satisfaction. She has simply pointed out that someone arguing against Dawson should try to come up (by themselves, or by pointing to some other lucid paper) with some cogent arguments.

My take on this is similar to what I posited for KC. I am here more out of curiosity than anything else. Is there anything wrong with that, or is there only room for ABA advocates in this comment section?

As for anecdotal evidence by MB, she seems to me to be too close to the forest to see anything but the trees.

It appears to me that a lot more research is needed, so that the next generation of parents have an easier time. And this research will not take place if positions are so hardened and well defended that proper unemotional discourse cannot take place.

Peatey:

You are right. I was just hoping for a pointer to some lucid counter-arguments to Dawson, so that I could read them and think about them. Maybe not agree with either side, but just think a little bit.

--

Phil

I am here more out of curiosity than anything else. Is there anything wrong with that, or is there only room for ABA advocates in this comment section?

I think I made it clear that I'm not an ABA advocate, while having a certain interest in the matter. Won't speak for MB, but it seems honest, non-flaming discussion is enouraged here. No need to get so defensive that mere (perceived) disagreement drives you off.

I support whatever therapy a parent choses to pursue for their child, whether it's ABA, Floortime, swimming with dolphins, GF/CF, enzymes, etc., as long as it's legal and doesn't physically or psychologically injure the child. However, "advocates" such as Dawson would not offer me the same consideration. They would like to see ABA and other behavioral treatments banned. Heck, I imagine they'd like to see biological interventions outlawed as well, as anything that interferes with the inherent "autisticness" of an individual is to be spurned.

Parents of autistic children have been blamed for their childrens' disease for years. My opponent in my Legislative race did the same, just this spring. Before, it was we didn't love our children enough, didn't bond with them, so they developed "attachment" disorders. Now, people like Dawson and her supporters claim that we're again harming our children, this time by trying to cure them, or at the very least, make their lives better.

What we need is for people to start supporting and stop judging us. Last a day or two in our households, then come back and say you wouldn't try everything in your power to save your child. All we want it the chance to do that, without the kind of sabotage Dawson and other promote.

MB,

Please let me make it clear: I do not blame you for your autistic child(ren), never did, never will. I have read enough articles (and seen TV shows) about what it is like to live with, let alone try and raise autistic children to be extremely sympathetic to your situation. I am quite sure that you are doing the very best that you can for your children, and it is quite likely that I would end up using the same methods as you are if my child was autistic. And I am quite sure that KC feels the same way, based on what few clues she given on her blog.

That said, the view from the trenches is quite different from the view 20,000 feet. Since I have no firsthand experience with any situation similar to yours, I have to look at the situation with a different POV. As someone trained as a scientist (although I have never been one), I am far more interested in looking at the situation from multiple viewpoints, from close and far, from left and right, and looking at it in an analytical sense. If this ends up seeming unsympathetic or overly critical of you, I am sorry, but that is where I am coming from. I find it very stifling if I am forced to look at things from only one position.

I first have to confess I've only skimmed all of the material, Cramer's comments and MB's comments, but I certainly get the gist. I am really dismayed, both as the parent of a child with autism, AND as a speech-language pathologist, to see this kind of polarization continue. I just find it so disheartening. I've chosen for many reasons not to use ABA with my son. It does upset me that as a parent, ABA is pretty much the only easily available option that is covered by my state's early intervention system and medical assistance. But I would never argue that ABA should NOT be funded; there need to be MORE choices available for parents of children with autism, not fewer. To blindly espouse one treatment modality, no matter which modality that is, seems wrong-headed to me. There are things to be learned from the whole range of approaches, and as someone in these comments pointed out, the fact that autism is a spectrum disorder means that there is no one right way for every given child. The fact is, there really isn't much good research proving or disproving the utility of ANY of the approaches to treatment. That's a fact that researchers in speech-language pathology, psychology and psychiatry are working to remedy. In the meantime, think how much more we as both parents and professionals could accomplish if we focused more on ways to help parents obtain the best services for THEIR child, and stopped being so determined to prove our point.

Ruth - best comment all day:

think how much more we as both parents and professionals could accomplish if we focused more on ways to help parents obtain the best services for THEIR child, and stopped being so determined to prove our point.

Hey, thanks, NTodd!

First off, MB thanks for the welcome the other week!

I am a parent of a "high autistic" child and the husband of a PT who works with autistics (and other disgnoses), and I have seen excesses on both sides. As a disabled person, and the husband of a disabled person, I know that the idea of a "cure" can be somewhat problematic.

On the one hand, it is important to get a child to be able to interact with his or her environment appropriately.

On the other hand, the child should be free to express himself or herself in their special way.

It's a tough line to walk. How do you know which treatments will work, and which will hurt? Would diet restrictions help, or is medication the only route?

When my son was first diagnosed, my first worry was that the therapies and treatments would ruin him. I thought that they would dull his creative shine and flatten the glowing personality we saw hidden behind his autistic behaviors. I dreaded the thought of him on some meds that would make him have some flat affect, walking through life like a zombie.

We got him into an appropriate school, changed his diet, worked on some behavior-modification techniques. I am glad we got him to understand the dangers of streets and cars and broken glass and fire. I am relieved every day that he stays in his head (if that makes sense) when something doesn't go according to his plan. I beam uncontrollably when he initiates contact with a peer or even (gasp!) a stranger his age. Does he still startle people on the subway with his "weird" behavior? Hell yes! And I wouldn't want him any other way. I just want him safe and able to be happy in this world.

It is hard, though, to know immediately what will hurt and what will help. But none of the treatments, even medication, is so dangerous that they aren't worth trying for a short time. So I believe that the therapies and treatments and diets and medications should all be available, but each child should be monitored by all of the adults; teachers, parents, doctors, therapists. If one of these doesn't work, you just stop doing it. There is no need to outlaw anything, just add a dose of common sense.

I keep thinking of Temple Granden and how her childhood was filled with horror because her parents treated her differences as just bad behavior that could be completely removed (through liberal use of a belt, but the method is of lesser importance to the intent in this case). As long as a parent isn't trying to rid their child of every single symptom at the expense of the child, it should be tried.

I'm sorry for the long comment; first time here and wanted to introduce myself at the same time. But when I read the NYTimes article, I thought "good for these kids to be able to grasp those concepts!" Once my son says to me "leave me alone, I am OK the way I am!" and he wasn't just repeating dialogue from some movie or book, I'd hug him till he squeaked and work with him to understand what treatments we do and why we do each and let him choose to continue or end each treatment.

Way to go, MB. Kick some butt. I saw the NYT article when it first came out, but was on vacation out of town and decided to avoid it like the plague. But now that You have opened the can of worms..... ;D heh heh....

The article was stupid to begin with, we parents of autistics and our children are not necessarily looking for a "cure" - we want it to stop from the GET GO, and we want our kids to be able to live the best lives they can. That means teaching them how to act within society, that might mean some rewiring. Whatever it takes. Some of our kids are on the borderline between whether they will or won't be able to live on their own.

Luckily that 10th grader is advanced enough that he can even TALK TO the NY Times. Fast ForWord rewired my son's brain enough so that he CAN have a conversation, instead of 3-word grunts and "EEEHHHHHH". However, I could just see his talking to the NY Times, it would be pretty funny. The reporter would have reversed her story so fast her head would have spun.

Whoever called PDD "autism-lite" is as much of an asshat as one of the commenters stated. From what the school psych has told me, it's a notch below Asperger's on the spectrum, because in the DSM-VI the definition of PDD says that there is early language delay, among other things. Which of course results in kids having language, reading and writing issues in school, no matter what their IQ..... but I digress.

I mean, really. God forbid anyone would want a "CURE" for something as horrible as autism. Yes, it's FRIGGING HORRIBLE. It's horrible that he will never have a normal life. It's horrible that he will have to live in a home someday, probably, after we die. It's horrible that he will never be able to have a girlfriend, a wife, kids, a home and family or a job, or go on vacations, or drive a car, or anything. And HE'S supposedly "autism-lite"!!!! ::::::Smack, smack:::::::

God forbid that we'd want our kids to be able to live on their own. God Frigging Forbid. We need ALL the help we can get, and if that means ABA, or whatever other therapies that work, then we NEED them and we DON'T need ignoramuses kicking our kids in the asses by dissing the therapies publicly. Whatever it takes is what we need. We pull out ALL the stops. And SUPPORT EACH OTHER.

Both of those women should shut their mouths and be thrilled that SOMETHING is working for somebody (or bodies). I also got Catherine Maurice's book way back when, but have not had to use it much with my son who, much like Ms. Cramer's son, doesn't have the same issues that kids who might need ABA tend to have. Then again, my son doesn't bite or scratch people. :*

Just because ABA kicks structure and rote up about ten notches doesn't mean it's a bad thing. I know a lot of **NT** kids who could benefit from some ABA, lol. Of course, I wouldn't expect Ms. Dawson to get that, gee, not if she's autistic. She wouldn't "get" the social implications. @@

Pissed Off Moi
(who is not intending to start a war, lol)

What we need is for people to start supporting and stop judging us. Last a day or two in our households, then come back and say you wouldn't try everything in your power to save your child.

AMEN!

We had a similar discussion with my parents. My son came out of the womb autistic. My parents were of the mind that some "discipline" would set him straight. On his three-month birthday, we celebrated by going out, leaving our son with the Parents.

We came home and all was silent. I snuck into my son's room and found him passed out in a pool of sweat and tears, shivering in his crib without any blankets. My mother responded to my (more politely worded) 'WTF happened here?' with "he was being fussy so we put him to bed. He threw his blankets out, so we took them from him to show him that it's not right to throw things. He finally went to sleep and everything is fine now."

We didn't let them babysit until after they promised that they wouldn't try anything like that kind of "discipline" again. That meant they lost about 3 years with Greg, which is too bad for them, but was necessary.

If only they had supported us from the beginning, instead of assuming that we were bad (lazy/appeasing/weak) parents.

If only Dawson worked hard on banning stuff like McDonald's or junk TV instead of helpful therapies, then all of those good intentions would make some changes for the better!

I was fortunate that my parents, despite their reservations about "spoiling" my boys (both of whom are on the spectrum and both of whom were high need infants) were totally willing to follow my lead. My ex-mother-in-law, on the other hand, would have done exactly as joshowitz described. She always wondered why we never asked her to babysit; that is exactly why.

Moi - Here, here. What amazed me is that the person writing the article didn't get the disconnect between someone on one end of the spectrum being able to explain themselves to a reporter, and someone on the other end needing to be spoken for by a guardian.

Quirky personality traits are great and all, but at base, all sane parents everywhere want their children to be able to take care of themselves someday. Anything that prevents someone from being able to take care of themselves on reaching maturity is a condition that is properly a matter of concern, and any parent is right to want to give their children the tools to overcome that. ...

...The problem with people on the Asperger's end of the spectrum is that a) empathy is usually an acquired trait, and b) their life experiences with caregivers can predispose them to distrust anyone who wants to 'help.'

When a person with Aspergers is undiagnosed, young life can seem like a perpetual circle of adults asking some version of 'what the **** is wrong with you?' Without an obvious disability, particularly when the child seems good at a few things, even parents and teachers may join the chorus of voices insisting on some inherent worthlessness, or general hopelessness.

The parents of a child whom they know to need extra help act differently than parents who believe their child to be just the laziest, stubbornest, most oblivious sumbitch ever born into the family. And a child in the latter situation is likely to grow up believing they were born bad and are a terrible disappointment to everyone, whether that's true or not.

And the practically inevitable miserable school years, where teachers join in wondering if you're congenitally lazy and kids have a hard time deciding whether you should be bullied or outcast, don't help to rectify the resulting mindset towards the rest of the world.

It's an incredible relief for someone on the lighter end of the spectrum who grew up undiagnosed to find out what's been happening to them all their lives. But if someone is capable of taking care of themselves out in the big room, then they need to either support or get out of the way of efforts to help others approach that level of functioning.

Anyway, that was pretty much my take on it after first reading the article.

Natasha, I love your post, I am posting that link on my bloggg...

I am sure the people posting on that blog have no clue about education, and that ABA techniques are used throughout school for children on AND OFF the spectrum. But then again, I guess since people who don't agree aren't allowed to post, they'll never learn that unless they read it here. ;) Of course the more severe would need more severe instruction. Is that a big DUH or what? Not that I'd expect a 15 yo Aspie to understand that but NT adults who blog in public and those writing papers to be published certainly should.

It bugs me is that a lot of these people think ABA is The Punishment Therapy. That is NOT what it is about. I have NEVER punished my son for things that were done while I was trying to get him to do things using ABA or any other methods. Teachers who punish like that are Not Good Teachers. Take it from someone with 25 years of teaching experience. (Teaching is teaching, doesn't matter what the subject, it's the methods...)

As a matter of fact, I rarely have to punish my kid for anything at all (the occasional fib and that's about it, and he sucks at lying lol). He's well-behaved both in the house and out, in school, in public, you name it. The teachers are gaga over him. My son, like most children, wants to please everyone. He also would like to be perfect, but knows he can't be. ;)

What is funny is that everyone assumes he is a "musical genius" - if that is just because he's autistic, or because we parents are also musicians, I don't know. Being a musician, I know he is not a "musical genius." He's good at his music because he practices every day (maybe a half hour max, he's 12, what do ya want?! LOL). He's good in school because he works his ass off, he does his homework, and he studies. He's not on 5 sports teams. He's not running around on the damn street.

Bug's doing well has absolutely nothing to do with his autism. It has to do with the way he is taught both here and at school, it has to do with the people who teach him, and it has to do with his therapists. All of these people have some knowledge of ABA and they do use it.

It also has to do with the way he is raised. He has a MAJORLY strong will. If Bug were to exert his will, he would be playing video games from the time he got home until the time he went to bed, and even then he would go to bed at midnight, like a lot of kids his age. That's no surprise. But the way I look at it, if he is to stand ANY chance of survival in the world, he lives by MY rules as long as he lives in this house.

I tell him that HIS "job" is school, he is a kid. He disobeys, the video games are yanked for a weekend. He likes rules, anyway. Plus he learns to make smart choices that way. ;) LOL Hence I don't have to punish him! :D My friends can't get over how I have to police him. It's a little less now as he's gotten older, but the kid needs Structure. And ABA is all about that, in a major way.

BTW if Bug were NT, the girls would be gaga over him, too, LOL. Click on Bugmusic! and see for yourself. ;) It's not a "musical genius" performance (Blue Xmas?!) - I just put it up there for the relatives and friends to see over the holidays, lol. He was on QVC on Christmas Eve and Christmas Day, playing with a local Youth Orchestra - he got to be seen all over the world!

And he has no idea what that means.....

Moi ;)

Weirdest thing, I just tried to post, and it went Poof!

I'll give it a few minutes then try to repost. Weird...

FYI, Michelle Dawson responds on KC's blog here: http://www.kathryncramer.com/m2/newarchives/2005/01/a_response_to_m.html#c2866

Michelle Dawon's current response was nothing new: "All you parents are hurting my feelings by saying autism in a disease or a disorder". Tough. I'm sure if she develops cancer, she'll merely think of the tumor as a natural part of her physiology and thus would never attempt to have it removed.

My children were poisoned by "unnatural" substances, which caused them grave neurological damage. Yes, their brains were "damaged". That doesn't mean they're damaged, anymore than if they had an arm or leg amputated. In the case of the latter, I would do my best to make life easier by providing them with what they need to function better, whether it be a wheelchair or prosthetics. ABA and other treatments are no different. They don't make our children any more "whole", they give them the tools with which to function, in this case, language and other forms of communication.

Dawson did not deny her desire to have these tools banned from use by families and educators of autistic children and adults. In fact, she made it even more clear that is her intent.

I got pissed. I posted over there, short and sweet, actually lol. Let's see if she "allows" it - if not, I'll post my comment Here.

I wonder what problem she has with children functioning in the world? Someone should ask her that.

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I suppose now the question is whether you can handle the justified anger of an autistic person at some of your and Kit Weintraub's assertions and the direct consequences of assertions like yours for many of us:

http://www.autistics.org/library/ambweintraub.html

Kit Weintraub's repeated assertions about autistic self-advocates seem to be borne out of the fact that she is not arguing from the truth, but from the need for us to be different from and always and at all stages doing "better" than her children at all costs (rather than simply differing with her on what we consider ethical -- and believe me we're neither advocating neglect nor accusing her of being a refrigerator mother, despite the fact that those would be much easier to argue against, and we do have many parents on our side). Unfortunately the truth doesn't bear out what she says about us, so she has most recently accused us of flat-out lying because of fictions she believes about what "everyone knows" about how autistic people's skills work.

Why not simply recognize it as a difference in ethics, not just a divide between two supposedly totally different subclasses of autistic people? (I have been put on both sides of that divide by others, and refuse to acknowledge either side as reality.)

For reference, people's medical records are private and I fully understand someone not putting theirs out there (would most parents put their child's medical records out for strangers to see?), but I was interviewed for the NYT article by Amy Harmon and I have shown her my diagnostic papers (which read "autistic disorder #299.00") so that she can in fact answer that she has seen them.

AB: Sorry, but it doesn't work the way you claim. Here is the diagnostic criteria (from the DSM-IV):

299.00 Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors, such as eye-to- eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level

(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication, as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c) stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals

(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)

(d) persistent precoccupation with parts of objects

It is this diagnosis, not the questions of PoAs which determine whether or not you qualify for in-home support services.

I do have one concern regarding the article you pointed us to; it states the name of the in-home support worker as Debra Kahrs. However, a quick googling of Ms. Kahrs indicates that she claims to be an autistic and highly involved in the autistics.org web community. As such, it would be hard to argue that she might be an unbiased informant.

As for my children's medical records and diagnoses, they are open for the world to see, if that's what it takes for them, and other children, to get the appropriate treatment needed. I would expect the same of anyone using their diagnosis to try and prevent our children from receiving appropriate treatment as well.

One of the things that troubles me in all this, is the feeling that adult autistics are looking to achieve their agenda of acceptance on the backs of our children: If the ranks of autistics grow, then society and the government might be forced to address these issues. If, however, we find ways to recover our children, then we might all somehow forget all the adults who might be past the point of recovery, or don't want to be "cured", just accepted. I fully support the desire for true civil rights for individuals with all neurological disabilities (and if you cannot live without assistance as an adult, then it _is_ a disability), but my children are not cannon fodder for your causes.

AB - Pardon my typing, I had carpal surgery this a.m. & sm using mt left hand alone!

Kit: Don't you question the fact that these people are highly verbal and intelligent, many of them successfully employed and in relationships, yet many of them claim not to be fully toilet-trained? Lack of self-help skills and self-injurious behaviors are usually associated with people who are lower functioning who are unable to express their wants and needs. These are the facts. I question strongly as to whether these people are being truthful.

AB: Kit Weintraub's repeated assertions about autistic self-advocates seem to be borne out of the fact that she is not arguing from the truth, but from the need for us to be different from and always and at all stages doing "better" than her children at all costs (rather than simply differing with her on what we consider ethical -- and believe me we're neither advocating neglect nor accusing her of being a refrigerator mother, despite the fact that those would be much easier to argue against, and we do have many parents on our side). Unfortunately the truth doesn't bear out what she says about us, so she has most recently accused us of flat-out lying because of fictions she believes about what "everyone knows" about how autistic people's skills work.

This is an example of exactly what I am talking about. Generalization. Assuming. Putting your own experiences ahead of other people, and trying to force the issue that "yours" (or Kit's, as the case may be) is the "right" way. You are as guilty of it as Kit is. Surprise, surprise, none of you are right, and that includes Ms. Dawson.

Autism is different from person to person as hair color, and it should be treated as such. Therapies should be given to the INDIVIDUAL as per what is APPROPRIATE and what WORKS. Not to the person for whom it is NOT appropriate. For too simple of an example, it is like getting glasses; you would not give a farsighted person the glasses for a nearsighted person, or glasses for someone who had macular degeneration, etc. Autism therapies are the same way. Including ABA.

Perhaps you are pissed or jealous because you did not receive appropriate services throughout your life, while others are receiving those services, and perhaps not. Should I assume that, because of your attitude, tone of voice, or chip on your shoulder? (I am not sure which it is, but it sure as hell sounds like it is one of those.) In any case, you are assuming (as Ms. Dawson did) that autistics can all actually advocate for themselves. Shall I start ROFL now? Or would that offend you, too???

I echo MB on this: As for my children's medical records and diagnoses, they are open for the world to see, if that's what it takes for them, and other children, to get the appropriate treatment needed. I would expect the same of anyone using their diagnosis to try and prevent our children from receiving appropriate treatment as well. I also would hope that my son's experiences might help someone else in their attaining services they need.

I also agree with MB on this: I fully support the desire for true civil rights for individuals with all neurological disabilities (and if you cannot live without assistance as an adult, then it _is_ a disability), but my children are not cannon fodder for your causes.

While I empathize with your frustration at Kit's assumptions.... (i.e. You're going to have to deflect anyone who questions my right to be out in public, which is something that happens fairly often if I go out alone, and you might want to gripe for me at people who talk to me in slow measured baby-talk. You might need to translate things back and forth between my often-unusual communication style and other people's, and read me things when I'm too overloaded to be able to read. You're also going to need to deflect anyone who tries to interfere if I have a meltdown, and you're going to have to put up with rude comments towards me and possibly towards you. - I think you should excuse her. You see, while you have all the issues you mention, you are extremely verbal in your writing. My child is not this way. Neither is MB's. MANY autistic children are not verbal. In print, you present yourself as an NT might. In print, and in person, many of our kids present themselves as...what? 4th graders? 1st graders? If that??? At least you can open your mouth (or your computer) and speak up for yourself. My kid will NEVER be able to do that and he is NOT alone.

And what when these children are grown up and we parents are gone? Do they deserve to live in a cardboard box? Will they be forced to because your "advocacy" convinces the government that nothing is "wrong" with them? Or do they deserve to be able to get services based on their issues?

My son will have no one to care for him when we are gone, and he will need someone. If that's what he would get with people who would ASSUME as advocates for him, then he sure as hell doesn't need that kind of advocacy. That's not advocacy, that's just bullshit.

A couple brief comments:

1. Debra Kahrs is not autistic, has never claimed to be autistic, has edited one interview for me, and participated in a workshop on institutionalization along with me as an *NT* who has been institutionalized so that we could discuss the similarities in experience. She is not highly involved in the autistics.org web community, she barely knows how to use an email account as far as I know, let alone become involved in an online community. The only list we're on together isn't a self-advocacy list and is entirely through my email account so it's simpler that way, and she never posts.

2. Anyone reading what I wrote above and thinking I advocate autistic people *not* getting services has their head somewhere I don't even want to think about.

3. Yes, everyone is individuals, but people can still talk about ethics, I thought.

4. I spent a good deal of my life with no viable means of communication and resent the idea that all people in that situation should have the decisions made based on the assumptions of people who've never experienced that state of being. I mean if you're arguing entirely based on who's autistic and who isn't in these things, I'm the one with that experience of lacking communication, and I'm the one who knows what it's like to have other people who have never been where you're at making a ton of wrong decisions while claiming all they're doing is helping.

5. Please refrain from attributing annoyance at being basically always right on the edge of survival to anything even remotely unjustifiable.

6. Yes, I qualify for in-home support services based on an autism diagnosis where I live. Many people don't because people use other assessment tools in order to deny services to autistic people and other people for that matter. I know a good deal about how services are and aren't provided across the country, I know a number of people whose lives are at risk every day because of lacking those services, and yes I will advocate for them to be recognized as just as autistic as anyone else. I don't understand why such advocacy would be considered a threat, it's much more of a threat when people say that people who can communicate some of the time (however fluently) have all kinds of other abilities we don't, because it's people like *that* who deny us needed services, not people like us who not only advocate for services but advocate for *appropriate* services that are (despite your conceptions of us) tailored to the individual a lot more completely than the system allows for at the moment. Just because we happen to question some of the way things are done to autistic people doesn't mean we're generalizing or stupid, and if you actually look at that "autistics.org web community" you'll *find* ABA proponents there because we're still hashing out exactly where the ethical issues lie in that regard. (We do know that some things, such as the cattle prod stuff, are never acceptable, and other things, which force us to act against our nature in ways that are *detrimental* to our functioning -- whether we can talk or not or whatever -- are also not acceptable. If you look at what we're actually saying, we're not just saying "No, don't help your kids," or no parent would dream of supporting us, and many do, including for instance Morton Gernsbacher who is also quite a reknowned autism researcher.)

7. Self-advocacy isn't just verbal skills. Self-advocacy is standing up for yourself. Dave Hingsburger has written extensively on the self-advocacy capabilities of people diagnosed as having 'profound multiple disabilities with mental retardation'. I know an autistic woman who teacher self-advocacy skills to autistic children, including autistic children who are assumed to have no communication. We're not ignoring the whole 'spectrum' here no matter what other people claim about us. (And I do think a lot of the misunderstanding on these issues comes from the fact that we've been *painted* as this narrow band of the autistic spectrum who doesn't care about anyone but ourselves and wants to take everyone's services away from them and leave autistics stagnating, and that's simply not true if you read us closely.)

8. As far as 'objectivity' goes, the only people you'll *get* who know me very well are Debra Kahrs, Laura Tisoncik, Joel Smith, my parents, and Jon Bennett who works for my supported living program. Do you expect an autistic person to have a wide circle of friends? You'll have to make do with the people who actually know me. (I do shudder to think that my parents could just as well have joined your end of things and said these things about me in the past and I'd have been just as defenseless because parents simply seem to have more credibility around autism than we do for some unknown reason.)

9. I do get in-home support services, supported living, and so forth, in fact I'm authorized for a good deal more than I get, the problem is actually getting the staff to come out for the required number of hours. Which is why I suggested that many of the folks who make it so hard for people who can communicate in some manner that's recognized by most people (I don't believe in 'non-communicative' people because I've met too many people with that label who communicate, never met one who didn't) could come out and get themselves hired. If any of you are in the Central Coast area of California, take the nospam thing out of my email address and email me, I was serious.

I am not sure who you are answering with whichever number, so I will just make a few comments.

2. Anyone reading what I wrote above and thinking I advocate autistic people *not* getting services has their head somewhere I don't even want to think about.

Then you don't agree with Ms. Dawson in re: ABA not being a justifiable service for autistics? That's partly what this thread is about....

Re: Standing up for yourself.....Unfortunately, standing up for yourself is only possible if you even get that someone is doing something against you to begin with. Which, of course, many autistics with poor social skills can't see. Including my kid.

You talk about autistics.org as if they all think like you. They don't. You are WAY more open minded than the majority of what I've read on there. No one's equating your being on the edge with anything justifiable, I didn't entirely support what Kit said, either. Yet your "annoyance" (hardly what I'd call it) comes off like you have all the answers just because you are autistic.

MY point is, NO ONE has all the right answers. Yet too many people ASSUME they do. Especially on that website. I am not in agreement with your opinion of it. And I am NOT in agreement with Ms. Dawson and her opinions, either, which are what really started this whole thread.

"A couple brief comments:
...
9. I do get ..."

Whew, glad to know I'm not the only one who practices "a couple brief comments!" :)

Just linked on this post from Moi's website. Joshkowitz, you nailed it.

The one thing no one has mentioned here is genetics; a specific gene was identified.

Also, this link provides insight on a new approach by Wakefield, focusing on viral "gut" issues.

My daughter is PDD, my son is not. Yet my son has lymphonodular hyperplasia of his ileum, commonly found in 85% of children on the spectrum (see Dr. Wakefield) and he is being treated as if it is Crohn's disease. Tell ME there is no genetic link(!)

There is more than just "being different" and "not fitting in". There is alot of research which suggests a biological cause(s) for the autism spectrum. The Autism Info link offers alot of technical information, for those interested.

All that aside, I'm a believer in ABA, although I am against restraints and adversives of any kind, and had that specifically put in my child's IEP (no "cupping of the face", either.) She also gets verbal behavior and socialization education, although paid out-of-pocket. And is GFCF. And just recently started Methyl B12 shots with a DAN! doctor, who, by the way, treats every child INDIVIDUALLY. I brought up chelation; his response? "You daughter is too high-functioning; it may be warranted further down the road, but not right now." AMEN. A dr who treats EACH PATIENT as an INDIVIDUAL.

What may have worked/not worked for Michelle Dawson, does NOT give her the right to say it is wrong for everyone. She made way too many generalizations in her article. Wonder what Temple Granden would think of Michelle labeling her as such: "Autism is incompatible with achievement, intelligence, physical and psychological integrity, dignity, autonomy, and learning: either you are autistic or you have access to these possibilities. Either the autistic gets ABA, and comes to resemble a non-autistic, or the autistic is doomed."